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Addison's Disease Message Board


Addison's Disease Board Index


I went into the hospital on the 9th for the metryopone test and I ended up in the hospital for 11 days. I ended up being ambulanced to the Mayo Clinic on day 8 and was diagnosed with POTS 3 days later. I guess only .185% of the US Population get it and I am now going to be a Mayo Case Study! I was told that this often get mistakening diagnoised as Addison's. The prednisone seemed to be helping because the medication they give me for this is in the same family.

So, something for all of you to look into as well. I was lucky. I was told that I was at 1 of 2 places in the world that would have been able to diagnose it. My dr is the dr that put the condition together! So at least I am in good hands. I just wish that I had more info.

Here is what happened this past week and a half...

Wed, the 9th I walked into our local hospital to have that final test for Addison's. I checked myself in at 7 p.m. At that time I had a splitting headache, but that was it. At midnight, the nurse came in bringing me 10 almond size pills that I had to swallow in order for them to draw blood at 8 am. At pill 4 it was getting nearly impossible to swallow anymore, but I continued forth anyway...NOT A GOOD DECISION. 45 minutes after downing all 10 pills I started to feel really sick. I called in the nurse to tell her that I wasn't going to make it. 3 minutes later I didn't even make it to the bathroom to throw up. I made it as far as the trash can, where I sat and threw up and threw up and threw up...It honestly felt as if someone poured gasoline down my throat and lit it on fire. I just about passed out on the floor of the room, but the nurse was FINALLY nice enough to get me back to my bed. This is where EVERYTHING starts to go BAD.

I was finally able to get some sleep but when I woke up in the morning my headache was at a 10, I was nauseated, had incredible stomache pains, and was awfully dizzy. So they started treating and medicating. It turned out that I ended up having an inflamed pancreas and something else.

With my headache being so bad, they decided to do ANOTHER nerve block at the base of my head. TALK ABOUT PAINFUL!!!!! 11 days later it STILL hurts - and BTW didn't do a whole lot of good. Here is one bad thing. They also gave me some medications to help with the pain, which ended up slowing my respirations down to 3 per minute!! My DH tells me the crash team was called in and they watched over me for quite a while. I had an AWESOME male nurse, who later told me how close I was to being 6 feet under. Unfortunately, this happened 2 more times while there. I couldn't get out of bed, sit up , ANYTHING! At about day 7, I was finally able to get out of bed to take about 6 steps to the bathroom, but ONLY with 3 people hanging onto me. I just wasn't getting any better and my dizzy spells were getting WAY WORSE.

Oh, the good news at this point, the medication that I puked up did get into my system and the blood draw was good - NO ADDISON'S!!! But then...what was it? They started REALLY monitoring my blood pressure and my heartrate. So they would take them both lying, sitting and then standing. It turns out that my blood pressure was all over the place everytime they did this but the major thing was that when I went from sitting to standing, my heartrate goes from 90 to about 130!!!! And no one knew why.

So, here we are at Tues. night a week later still feeling awful. My male nurse pulled my DH aside and told him to get me out of there because the doctors had no clue and they were guessing at that point. The next morning, they performed the same tests with the same results. At that point my DH asked at what point do we look to go to somewhere else for answers. Right then and there the Dr. said, "I think we are at that point and I will write the papers right now to trasfer you to Mayo Clinic." My male nurse was there in FULL support and said that he was going to get everything ready and that I needed to be taken by ambulance - it was an hour and a half ride. So they got everything ready and the ambulance guys showed up to get me. They gave me a little pain mediation for my head for the ride.

Well...it was an interesting ride. I fell asleep right away and the next I knew I was getting a sternum rub from the ambulance guy because i was not responding AT ALL. BTW - it still hurts. Funny thing though, as much as it hurt, all I could muster was to open one eye. He said, "I need the other one open too!" So I tried, but then I had to shut them both again. Then I got yelled at. Needless to say, I tried REAL HARD to stay awake to answer his questions.

We finally made it to Mayo, got checked in and they got me up to my room. I told them that I had to go to the bathroom. The bathroom was right at the entrance to the room so the ambulance guys stopped the bed there, dropped it and got me to sit up. Then they they flanked me, asked me if I was ready to get up, I said yes. So I went to stand...I passed out. All I remember then was hearing...."Lisa...Lisa...Can you hear me? That was a valiant effort, but I think it is the bed pan for you!” LOL! So, I get in bed and meet my young buck doc, who looked liked he was 18, with braces all decked out in Harvard blues. (He ended up being great BTW). So Wed was a day of talking with TONS of doctors.

Thursday I spent all day doing tests. I had more Addison’s tests because my adrenal function was still abnormal, I had an MRI, an autonomic response test and a tilt table test, plus TONS of blood work. Talk about a day from hell. The autonomic response test was unbelievably PAINFUL! They ran electric current along my left side from hand to toe for more than 3 minutes straight. When they turned it on I swore someone had set my skin on fire. Even the testing crew came running because I was screaming. She was yelling, “It’s wet! It’s wet! You only have to last for 3 more minutes!”

Then came the tilt table test. They strapped me to a table and stood me upright, where they constantly were monitoring my blood pressure, heart rate, and a bunch of other stuff. I had to stand there for 10 minutes or pass out first. Nice, eh? As they started the test, doctors started walking in. And as the test progressed more came and went. There I stood in total agony and there they were whispering to each other, exchanging papers, checking out the computer screens. As soon as they stood me up my heart started to race and I got majorly dizzy. At about 8 minutes I thought I was going to make it. I felt like I had my breathing under control and I was actually standing okay without the dizzies. Then the nurse said “Two minutes left.” Ten seconds later, my legs fell from underneath me, my heart started to beat uncontrollably (I think it was in the high 130s at this point) and I was just about to lose it when they tilted me back. I just broke down at that point and the nurse was there trying to reassure me that I was going to be okay and they had gotten all the information they needed.

So Friday I waited for the docs. They came in and told me that I have a VERY RARE condition called Postural Orthostatic Tachycardia Syndrome (POTS). .185% of the people get this! I guess I have to say that I was very lucky because Mayo and my doctor would have been one of only 2 places in the world that would have figured this out. My dr. is the dr. that put this condition together! So at least I know I am in good hands. I was told how rare I was and that they were going to be doing Mayo Case Study. I feel so lucky! The young doc also told me to watch out because once all the neuro geeks there hear about me they are ALL going to want to get their hands on me. LOL.

Anyway...This all basically means that my body cannot handle any change of position well. That even means something as small as turning can send my body into a nasty spell. My blood pressure is fluctuating, but the major problem is the heart rate. Going from lying to sitting can send my heart up to the 130-140s easily. My body then produces too much adrenaline, which then causes a drop in blood pressure, which then could cause me to pass out. There are TONS of underlying issues with all of this. Unfortunately, there is no cure, no real treatment plan. It is all a hit or miss. I am supposed to eat as much salt as I can get my hands on. Drink at least a liter of Gatorade a day. I am supposed to stay away from things that are going to be next to impossible for me to be away from (i.e., sugar and carbs) One thing I have read that can help is getting a pacemaker! Imagine that at 32!

At this point, I cannot walk more than 40 feet, if even that and I cannot stand for more then 1 minute before I feel like I am going to collapse. I cannot turn my head without getting EXTREMELY dizzy and my headache is KILLING me. I honestly am not sure how I am going to live like this. If it doesn’t get any better then it is right now, I am not sure what I am going to do. This is NOT living at this point. I can barely make it to the bathroom and to bed by myself. I can’t do ANYTHING with the boys. Even having them sit with me is hard because I am SO UNCOMFORTABLE. I feel so guilty that I can’t do anything for them. I can’t even be around them playing because the loud noise is too much for my head! And get this...I am supposed to be back to work on Thurs! At least the dr had orders that I could fluctuate my hours for the 1st week to see how things were.

The medication they have me on is NOT working AT ALL at this point. So I am already getting VERY CONCERNED. Tomorrow, I have to go and talk with physical therapy to try to get into a overall conditioning program since my whole body has been totally devastated at this point. I lost 11 lbs. this past week and a half. My muscles and everything are totally gone from sitting in that damn hospital bed.

I hope you all find out some answers too!
~Lisa
Hi Lisa,

I, too, was watching for your next posting...hoping everything had gone okay with your testing. It sounds like you've had one heck of a couple weeks, but if there's anything positive to come of it, you now have a diagnosis! It sounds like a horrible thing to experience on a daily, hourly, minute-by-minute basis, but it also sounds as though you are going to have a lot of medical support and interest seeing as you are so unique! I'm sure they are going to want their "case study" to have a positive ending!

I hope you start to gain some strength back and that every day gets a little better for you. Thanks for letting us all know your experience!

HB
Lisa,

Thank God you are okay! What a horrible experience. I never imagined something so terrible would happen. I have been worried that you haven't posted but thought it was for a good reason (that you got your diagnosis and had already felt so much better yu didn't have time to post!)

It is painfully ironic that such terrible things had to happen to put you in the hands of those who could figure it out. Now it makes so much sense that your primary symptom was dizzyness. No matter how we all think we get it-there is always another angle to examine things from. No wonder some doctors can't figure it out sometimes!

I am happy for you that you have answers but want you to be able to feel better. What were the results of the adrenal testing they did at Mayo (what tests did they run?) Did they measure aldosterone and renin? I am just curious because they sure found answers. (That tilt-table sounded particularly fabulous ; ) )

Let us know what is going on as you feel up to it. I want to learn more about your diagnosis.
Please take careful care of yourself. You've been through alot!!

Sadie
tcnj_mom -

I am not exactly sure what the next step is. Neither do they. They have put me on some meds they are hoping will help, which haven't yet. It is all a total hit or miss. I have been told it is all about learning to live with it - nice, eh? Unfortunately, this testing stuff has REALLY made it bad. To the point of making it to the bathroom alone is hard. I need to start a physical therapy program and try to get my body to learn to function in some form without crashing on me. All I can say is, it is really hard to know the difference between a heart attack and the chest pains associated with this. I have even read that some people end oup passing out, ER teams think the patient is in cardiac trouble, which in this case in not truly true. People end up getting pacemakers put in. Which as awful as that is totally helps and basically ends this problem, just starts the pacemaker problem then. So if this doesn't get any better maybe that is an option. But I can't imagine that at 32!


sadie-mae -

When I got to Mayo, they reran the cortisol test and the cosytropin tests. Both came back low, but they feel that my adrenal function is there. Today is my last day on prednisone!!!!! I gained SO MUCH WEIGHT on that stuff - but I lost 1/2 of it in the hospital! 11 lbs gone, just like that! Now I am on beta blockers. The prednisone seemed like it was working becasue it was in the same class of medications used to treat POTS. I am just concerned that what they have me on now isn't working...I may have to request to go back on the prednisone since it was working.


All I can say is that I wish I would have gone to Mayo a LONG TIME ago! I live only 90 minutes away, but I had just had enough of doctors. I guess it was just all meant to happen, unfortunately. Now it is time to try to figure out how I am I going to live with this.

I hope all of you find some answers. Hopefully, not in the same manner I did. I would not ever suggest that metrypone test to anyone! Just don't do it! Good luck to all of you. I will still check in to see if anyone has any questions!

~Lisa
Lisa ~ My brother is hospitalized with the same exact scenario as you, in fact this happened to him 2 years ago & they worked him up for almost 2 months and diagnosed him with POTS. They put him on beta blockers too...started with lopressor and switched to topranol. He was pretty much okay on the meds but in the evening would get the bad headaches and would have to lay down. However....the other day he started with the unncontrollable tremors and a severe headache and cannot sit or standup without severe dizziness or passing out. He is back in the hospital since yesterday and being worked up for a condition called Phenochromocytoma ( a tumor on the adrenal gland). They ran the tests and have put him on Catapress and Libiterol. They feel he may have a problem with his Autonomic nervous system which is basically what POTS is considered.

I would appreciate any info you can share with me in regard to your treatment since it sounds so similar to what my brother is going through.
I hope that they find a way to get you back to a good quality of life....if it is any help once the meds were regulated my brother did well until 3 days ago. I will search to see where exactly the Mayo clinic is...I believe it's in Ohio if I'm not mistaken. good luck & I look forward to your future posts....Goody :wave:
I am going to the main Mayo Clinic in Rochester, MN. At this point I am not sure if the beta blockers are doing TONS of good. It has slowed my heartrate when I stand up. That is staying pretty steady. However, when I am up and walking around I can only stand about 50-100 feet before the pressure in my head and chest are terrible and then I start to get dizzy. It was so bad last night that I had to lay my head on the counter and cou;dn't even pick it up to look at anything. My husband almost had to carry me up the stairs to go to bed! Ia m not sure what has triggered this latest episode. I am going back to Mayo on Monday for additional tests and hopefully some additional/change of medication.

I am also dealing with a possible irritated vein in my left wrist, which may be a blood clot.

When it rains it pours because on Sunday I also found a lump in my right breast which I am going in for a mammogram and ultrasound tomorrow.

Then it is back to the internal medicine doctor to try to convince him to allow me to go back to work, but maybe in a wheelchair just so I can work safely and don't have to try walking around to do my job. I am also going to ask him to inject my shoulder/neck with some novacaine and lidocaine mix, just to try to relax stuff so I am not getting such bad headaches.

Nice life right now, eh? It is reallu taking it's toll on my oldest child as well. We are talking with a social worker tomorrow at his school, he is starting to get anxiety and a little depression over all this.

Anyway...What are they doing for him in the hospital at this point? All I am doing is on beta-blockers and going to physical therapy in hopes of getting myself back upright and doing it safely. I hope things work out for him. Keep me updated.

~Lisa
Lisa ~ Thanks so much for sharing your progress with me. Right now my the latest is that my brother is responding to the meds...Catapress & Labetalol to the extent of it allowing him to sit up in bed and alleviates the headache somewhat. The endocrinologist is suppose to meet with him sometime today once all the urine, blood, and CAT scan results are back to let him know whether or not his adrenal gland is involved. So it's a waiting game.....

How are you feeling??? Did you have your mammo??? And what meds are you on???? I surely hope they start kicking in so that you can get back to some quality of life. And how are your headaches??? I thought you were still at the Mayo Clinic by your post but I see that you are home. Please know that you are in Goody's prayers and I will keep you posted as to my brother's progress and look forward to keeping up with yours....Goody :wave:
Lisa ~ Haven't heard from you in a while....I hope that means that you have been busy getting back on your two feet and that things are going better for you. :angel:

Goody got some good news...my brother is finally able to walk after being on the meds for 48 hours. However, the doctor will be in to speak with him sometime today about having a pacemaker inserted within the next few days. Apparently he is on Catapress, a betablocker, as well as Lobiferol, and anti-seizure to control the tremors and they seem to be doing well in terms of getting him to ambulate without passing out. However, his pulse has gone down to the 20's while sleeping so that's why he'll need the pacemaker. The doctors seem to think that he can stay on the lower doses of the meds but the pacemaker will also allow for adjustments in the future if need be.

So...I guess that's pretty good news. :D Lisa, please post here with an update...for you have been in Goody's thoughts & prayers.....Goody :angel:
Hey Goody -

I am still alive - I have just had a long week. I had a followup appointment at Mayo on Monday, where I feel that I really didn't too many more answers. Basically they told me that yes, all of my symptoms (chest pain, pressure in my head, lightheadedness, diiziness, tremors, coldness, nausea, etc.) are all from POTS. He said that it definitely tells me that is what it is. He said though that until I was able to get back to some basic level of health, that these symptoms would continue as they are. It is funny that in your last post you mentioned that your brother felt like his heart was stopping. I just mentioned that to my doc too. I said that when I am asleep, I wake myself up because I feel like I have stopped breathing and it scares the death out of me. He asked my husband if he ever has seen me stop breathing, he said no, but he also hasn't been awake or there when I have felt this happen. I am concerned that it too may be from my BP and heartrate being too low. My blood pressure has been aroun 92/61 (which is definitely low for me) and my heartrate (when walking) is in the low 50s, so I can't imagine what it is when I am actually asleep. I know that my husband woek me up on the way to Mayo, I was napping, because he couldn't see my chest raising and lowering and he couldn't find a pulse.

Somehow I am supposed to do physical activity and "work" through the chest pain and the head pressure. I walked to the pharmacy and back at Target the other day and I SWEAR that I was having a heart attack. I know I wasn't but how I am supposed to handle going to physical therapy? I tlkaed with them, they don't know what to do and are afraid to have me there because something bad might happen. I have to talk with them tomorrow to discuss a "plan of attack" My doc wants me to get a treadmill and walk at least 5 minutes a day on it. Which at this point is WAY TOO much at a time. But he said that I need that to not lose any more of the muscle that I do have.

The doc says that he feels that the beta blockers are working. Which I do think that they are in some fashion. When I get up, the dizziness is not there instantly. However, after 2 minutes of standing, the chest pain and head pressure start, then the lightheadedness, then the dizzies and then the extreme nausea. Then I start to feel real faint. They did an e test on Monday, which I am waiting for the results of. They think that I am producing too much adrenaline. I am not sure if they are going to add meds depending on what those results are or not. But the doc is sure that is what is happening.

He also has me now wearing waist compression high panty hose 20-30 compression rate. He is trying to keep the blood in my chest and head versus my legs and feet. Also, I need to start on the pedialyte (not Gatorade) and eatting TONS more salt, which is very though for me since I do not care for the stuff.

Other than that, he basically told me that this is going to be a long battle, but he expects things to get better. I am just afraid that if they don't he won't admit it, and it will be to something I am not doing right. I hate living like this already.

Today I went to Walmart just to buy diapers for my son and I was so ill when I left there it was awful. I just sat in my car because I couldn't stand to start driving.

They are basically telling me at this point, this is what you have and you are just going to have to learn to live with it, and do it safely. Then having Addison's on top of all this is not good either. Also, for the RSD, I talked with my chiropractor today about doing trigger point injections for my shoulder/neck. Every 3 days he thinks they should be done. I talked about this with my internal med doc last week and he said, just let me know when. Also during this time I also hope to do the Lidocaine infusion as well. Hopefully between the 2 I will get some relief and then the chiro can get in there and do some work to loosen the muscles that need some relaxation.

Tomorrow I am heading to my ortho to have her take a look at my arm. It will have been a full year now since my surgery and it still is awful. So it will be interesting to see what she has to say, especially about the Lidocaine infusion. My mayo doc also thinks that I should go back and see a rehab doc there since he works on a lot of RSD cases. My work comp didn't take his diagnosis before, so I can't imagine that they would send me back. He said that I have Thoracic Outlet Syndrome also. Which they tests did show. I found out on Monday that I have it in BOTH arms too! Great, eh?

I should be an interesting next few weeks. Hopefully I will find some relief and get some more answers about all this. I still feel awully lost and that none of the docs really know what to do about it all. My Mayo doc says that he is more worried about me mentally than physically, imagine that? I do feel like I am going to crazy at some point, since getting no real answers is not the greatest feeling.

Well, i hope your brother starts to feel better. As afraid as I would be to have that done, I wish someone would at least maybe say that is an option versus having to live with all this crap. I can only take this for so long. Do is he on any of the meds he was on before the pacemaker? Are they thinking he will get rid of all the meds? Did they say what his chances of being back to normal are with that in? You will have to keep me updated on how his symptoms are doing.

I hope life gets better for him. This crap really sucks. It is also taking a toll on my family, as I am sure it has on yours. My 6 and 2 year olds can't really deal with this anymore.

Keep in touch. I will let you know if my ortho has anything interesting to say, or if I hear back from Mayo about my test results.

Have a great night - tell your brother to stay strong!

~Lisa
Lisa,
I know I keep asking this (I am sorry) but have they tested your standing and laying down renin and aldosterone levels? Are your electrolytes always normal on bloodwork? Are you on florinef as well as the beta blockers?

Are you on full replacement steroids for the Addison's yet?

I read your posts and my heart goes out to you. I can tell you are confused and not entirely sure of what they are telling you. That is why I am asking. I am sure all of these things have been done, but just in case-it is all a part of Addison's treatment required for most. I want you to be able to maximize your Addy treatment to be able to battle the POTS.

Please take care of yourself,
Sadie
[QUOTE=mngirl]

I should be an interesting next few weeks. Hopefully I will find some relief and get some more answers about all this. I still feel awully lost and that none of the docs really know what to do about it all. My Mayo doc says that he is more worried about me mentally than physically, imagine that? I do feel like I am going to crazy at some point, since getting no real answers is not the greatest feeling.

Well, i hope your brother starts to feel better. As afraid as I would be to have that done, I wish someone would at least maybe say that is an option versus having to live with all this crap. I can only take this for so long. Do is he on any of the meds he was on before the pacemaker? Are they thinking he will get rid of all the meds? Did they say what his chances of being back to normal are with that in? You will have to keep me updated on how his symptoms are doing.

I hope life gets better for him. This crap really sucks. It is also taking a toll on my family, as I am sure it has on yours. My 6 and 2 year olds can't really deal with this anymore.

Keep in touch. I will let you know if my ortho has anything interesting to say, or if I hear back from Mayo about my test results.

Have a great night - tell your brother to stay strong!

~Lisa[/QUOTE]

Thanks, Lisa, for your update. Geeeez, I really wish there was something I could do for you. Doesn't seem fair that you have to live this way. The more you tell me about your situation the more it sounds like my brothers :eek:

Prior to all this my brother was on lopressor and then switched to Topranol XR. Then things got worse to the point of his hospitalization.....the tremors were uncontrollable and the headache & inablility to walk without passing out. The started him on the Catapress (betablocker) & Lobiferol (antiseizure/for tremors) prior to the pacemaker. Now that the pacemaker is in place they can safely adjust the meds wirhout his pulse decreasing to dangerous levels while sleeping. Sounds like by what you describe in your post you may be going through the same thing.

Lisa, my brother has been told that he will pretty much be on these meds for the rest of his life. Seems the best that the docs can explain is that somewhere in his nervous system there is falulty wiring that causes this. He just seem relieved that they have found some meds to get him back to somewhat a normal life. I guess my family is use to these sort of things......somehow God has equipped us with extra serenity powers needed to have the courage to accept the things we just can't change and to make the best of it. But, Lisa, that doesn't mean sitting back and knowing that something can be done to make your life better...in your case I say do not accept that you physically have to live like this....I think your doctor should definitely be looking into ways of getting you to function better & I say if he remains closeminded to this then go find another doctor. My brother's condition was BAD.....unable to walk at all and he is convinced that this weekend he will be out shopping for his son's Communion outfit!!!!

You and your family are in my prayers. I will continue to check in here and offer you support and let you know of my brother's progress. I hope to hear some good news from you soon.....Goody :wave:
[QUOTE=heartlandguy]You certainly have loads of serenity, my friend. :angel: If having serenity comes the problems that you accept so easily, I should count my blessings that I have poorly-developed serenity.

With the pacemaker in and his condition stabilizing, does your brother think he won't have to go to the specialist in Maryland?[/QUOTE]

Good morning, Heartland :wave: You are such a dear friend to offer me your support & praise each step of the way. Thanks for that ;)

It looks as if the specialist in Maryland was a last resort. Open Brain Surgery usually is. And so, since the meds seem to be doing their job that's the form of treatment. The same with my back...surgery will always be a last resort because even after having it there are no guarantees that anything will be any better and possibly even end up worse than beforehand. So I guess time will tell.

Yes...there is alot of serenity and the meds I am on make it even feel more apparent :D Thanks for your friendship.....Goody :wave:
Oh Goody...I was hoping to hear some good news about him...I am also on medication because I too have an inflammation with the lining of my heart, due to the severe tachycardia I have been having. They put me in Bextra to help. I will say that it has a little bit, but then again I haven't been up walking very far. When I go about 1/2 a block, then the MAJOR chest pain starts. According to my doc, that should get better as I start to get back to some normal stage.

I called to start physical therapy yesterday at my old place and she asked me "What are the chances of you passing out on us?" I told her that I didn't know. She said that they discussed it and they would rather that I do my physical therapy at the hospital in case something happens, they can do something about it right there. So, Monday I start PT there. It should be interesting.

I have also started taking Cymbalta for the pain that I am having for my head/shoulder and elbow and I am not sure if my reaction is to the new drug or the POTS and Addison's. I had MAJOR dizziness, nausea, itchy skin, like a sinking chest feeling, MAJOR tremor (so bad I couldn't sleep) and I sweated so bad I soaked my clothes and the bed. I am still really sweating even now.

I went to my arm doc on Thursday too and guess where they are sending me (I am now a year out from my surgery)...To a pshycologist. I have 6 hour and a half abppointments. She is hoping that he can help with stress management, pain management and relaxation techniques. I told her all that was also happening outside my arm and she definitley thinks this is a good idea. She told me that she is surprised that I am not in a deep depression at this point, because many of her patients in the situation are. I have been trying tot stay positive so I don't go loony, but I am sure that it only last so long. They said if this doesn't help that they will refer me to a pain management clinic to try some alternative types of pain management (whether that be some type of pain implant, etc.)

Anway...I hope your brother starts to feel better. Keep me posted...

~Lisa
Hey, Lisa......I think it's great your seeing a psychologist, I can imagine how all this must be taking it's toll on you. I feel so bad that you have to feel the pain and as dibilitated as you do...but I do think it's a good idea to be monitored closely with the PT in a hospital setting just in case. Hopefully the meds will start kicking in. sounds like perhaps you may need to have increased levels and the pacemaker as well. Perhaps that is something you may wish to discuss with your doctor.

Just received a call from my SIL.....both my brother's lower lungs have collapsed.....they have him walking around and using an incentive spirometer in which he has to take deep breathes to try to reinflate those lungs. I am worried....at least there is no chest tube in, then I would be really worried but my biggest worry is him catching one of those superbugs that they can't treat that lurks these hospitals. They intend to do a repeat echo to check the amount of fluid on his heart...if it hasn't improved they will use a needle to aspirate it out tomorrow....eeeek my poor brother. My mother is beside herself & I am spending my time to try to alleviate her fears which is difficult because I share the same fears myself. Please keep him in your prayer as I already have you in mine.....Goody :angel:
[QUOTE=heartlandguy]What do you mean by "these hospitals", Goody?[/QUOTE]

Heartland ~ I didn't mean to infer any particular hospital but hospitals in general. It has been found to be of great concern, that as well as they clean a hospital, there are virulent strains of bacteria that form that have formed a resisitence to most broad spectrum antibiotic treatments. In other words....the faster you can get yourself out of a hospitilization the better off you will be. When I went in for my colon surgery, Tom was given specific instructions on exactly what he needed to do in order to get me out of there ASAP. My fear was staying there any longer than I absolutely had to in fear that I would catch one of these superbugs they're talking about. Bacteria are creating new strains of themselves that are highly resistent to conventional treatments......quite scarey, huh????

Anyway....this is my fear for my brother and I was very open with my sister in law on exactly what she needed to do with him in order to get him out of there.....Goody
Heartland ~ Please do Goody a big favor & double up on those prayers. I almost would like to cancel my trip after just speaking to my brother....he sounds just awful and I am in tears at having to go so far away without knowing what's going on with him. My SIL said that he is not doing his breathing exercises as I instructed and that they doubled his morphine for the pain. The increased pain sounds like he must have more fluid buildup on the heart...I'm just so scared. My SIL says that she expects that they will have to surgically remove fluid from his heart next week with a needle. I told my brother that I wanted to cancel my trip & he was insistent that I don't or he would never forgive me. I promised him to wake up every morning with the sun & offer up a prayer for him....but my heart is heavy because I'm afraid something may happen to him while I am away. I really have a heavy heart at this moment....and I can almost feel his pain. I feel better just knowing that you will keep him in your prayers.......Goody
Just checked my email and it seems that there is a slight improvement in the pericarditis my brother has but not what they had hoped. They are putting him on prednisone hoping that it will resolve some.....if not by next week they intend on moving one of the internal leads of the pacemaker which they feel has caused irritation to the heart....they want to leave that as a last resort. My brother is fed up with the pain and limitations this is putting on his life.

Heartland....thanks for the prayers....I can feel them all the way in Cancun.....between my brother and my back feeling good. :D There´s some overcast so I am treating myself to some cybertime while Tom is out trying to catch a sailfish :eek: I will join him next time.....he´s checking it out to see if I can take the rockiness of the boat out at sea....We´re having a great time...youngest daughter won the limbo contest last night :bouncing: Wish I could say I could do the same ;) .....Goody :wave:
Thanks, Heartland.....wow a plumber and a man of many talents ;) I gather the custom vanity has arrived......Mrs. H must be smiling just waiting for it to be installed!!!

Yes....so far everything has worked out for a terrific vacation. Thank goodness my brother is holding his own....knowing I can check my email is of great comfort. I finished a book and am halfway through another (no not Ellis, my friend :nono: ) and as I was relaxing I got a pleasant aroma of a wonderful pipe......are you sure you´re not here in Cancun??? I know.....you did mention that you gave it up a while back but I couldn´t help thinking about you.....I even shouted out "Heartland???" but I only got a funny look from the people around me. :D

Tonite is karaoke night & Goody is thinking of belting out a tune. What should it be???? My 13 year old will probABLY TAKE THE STAGE AND WIN ANOTHER T-SHIRT :bouncing: And she won´t share the stage with me, that´s for sure. Who knows....maybe I´ll win a t-shirt :jester:

Making some friends here as I relax....one couple is on their honeymoon and we´ve been drinking some tequila together....medicinal purposes ;)

Well, good luck with the pet project......and don´t install the piping backwards....we want the hot coming out of the right faucet ;) Okay....I know you already have a wife to direct you.....hehehehehehe :D :D .....Goody :wave:
No big news on my brother.....hopefully the prednisone is doing it´s job.

Heartland....you´re sense of humor is always intact.....of course I meant the left and believe it or not I am use to the meds now...feel as if they don´t even affect me in a bad way anymore...must be the vacation and relaxing effects :bouncing:

Tom caught a 89 inch sailfish and 4 ft barracuda :D :D He´s a happy man to say the least.

Goody chickened out on the karaoke....turned out the first singer was rather professional and no matter how good I may think I am I couldn´t hold a candle to him.....my daughter wasn´t intimidated & held her own. ;) But I have been listening to "Wind Beneath my Wings" on my K´s ipod that she prerecorded for me along with some caribbean tunes. I did win at BINGO last night....a bottle of tequilla for Goody & a T-shirt for Tom :jester: Goody won the biggest prize....not bad for this lucky gal :D

Well....the time is winding down....it goes too fast but it was just what I needed. Missing you and all here......Goody :wave:
[QUOTE=goody2shuz]Just checked my email....my brother is back in the hospital....they plan on removing one of the leads of the pacemaker that is irritating his heart to a different location I believe tomorrow. Will keep you posted.[/QUOTE]I'm assuming this is less serious than when they installed the pacemaker... right? Is this process considered something major or is it fine-tuning as he improves? :confused:

[quote]Mrs. H must be jumping for joy[/quote]Life has been very pleasant the last few days... :p

[quote]K. is making friends with alot of the Mexican males :eek: She´s determined to have a guy in every country ;) What´s a mother to do :cool:[/quote]I'd expect nothing less from the daughter of an "Ivory Girl". :D Be glad the younger daughter isn't doing the same thing and making you ask for doubles during happy hour. :jester: Maybe "Home, Sweet Home" rings a bell? :rolleyes: Sip slowly....................
[QUOTE=heartlandguy]I'm assuming this is less serious than when they installed the pacemaker... right? Is this process considered something major or is it fine-tuning as he improves? :confused:[/QUOTE] Pretty much a fine tuning....they feel they punctured the lining of his heart with the insertion of the lead and that is why it must be moved. He goes in midday tomorrow....just wish he would feel better is all.



[QUOTE=heartlandguy]I'd expect nothing less from the daughter of an "Ivory Girl". :D Be glad the younger daughter isn't doing the same thing and making you ask for doubles during happy hour. :jester: Maybe "Home, Sweet Home" rings a bell? :rolleyes: Sip slowly....................[/QUOTE] Tom & joined in on a "How to make a cocktail class".....I drank 5 samples and almost sank to the bottom of the pool :eek: Was great fun....K. & her sister are the activity director´s assistants....they should be getting paid but the workers here only make $100 a week so they are donating their services ;) ( the workers are cute and that is benefit enough ;) ) Meeting alot of northeasterners and Canadians.....and Tom is saying next time we must come for a month.....it is nice :D :D But Goody does miss home....aka Dorothy...."there´s no place like home"

Will know more about my brother on Thursday......Goody :wave:
Hey Heartland :wave: I appreciate your asking for an update on my brother. Of course he is the first person I called when I got home (besides my mom of course) He is doing okay but did sound out of breath on the phone. He says that he feels a tremendous amount of pressure in his chest upon standing & is trying to get himself off the morphine for pain. He expressed his depressed state of having to be incapacitated for over a month now and I told him that I certainly understood that more than he thought since I have been going through something similar and told him that things would get better eventually and that for now he had to focus on keeping the stress levels down and working with the doctors in adjusting the meds in order to get him to a good quality of living. He's alot like his sister in terms of having difficulty being dependent on others and wanting to be active in life.....even more than me. So you can only imagine how difficult this must be for him. He's the one who plans on putting on that extension. He wants it done yesterday.

My mom answered the phone crying...she said that it was a really scarey week, at the communion she said she was afraid he wouldn't make it through the week the way he looked & then he came down with a raging fever.....my SIL avoided telling me the entire truth so as not to ruin my vacation but my mom said that the day before my return he took a turn for the better once they resituated the intermal lead of the pacemaker on his heart. So......for now things look okay.....I only hope he continues to improve.

Thanks for your continued prayers and concern. As usual you're a terrific friend who continues to hold my hand through the dark moments....thanks for that.....Goody
Heartland ~ Spoke to my brother this afternion after playing phine tag most of yesterday. He is doing much better...off the pain meds and steroids and will start back to work half days next week. He says that he is back to activities of daily living and is doing well but experiencing some pressure in his chest that the doctor says will resolve in time. He sees the doctor tomorrow for a followup. He is putting the extension on hold until the fall & is planning on putting in a hottub and some decking and doing some interior renovations that can be done over the summer. He is planning a trip to Long Island for Father's Day.....he takes the family camoing everyyear not too far from our summerhome & we will get together as we do each year. We go to the Riverhead raceway to watch the car races....and always end up having a blast. So....we will get to see each other soon, thank God. I really miss my brothers alot.....I use to see this one often when he drove once a month to get his daughter but now he's been flying her since she is almost 13. And with the gas prices it actually ends up being cheaper.

So.....it looks like things are looking up in terms of everyone's health lately. Goody couldn't be happier. Thanks for your prayers......Goody :wave:
[QUOTE=heartlandguy]That is really good news about your brother compared to your last report. I know that really makes your day brighter. :)

I've noticed that praying for each other seems more effective than praying for one's self. Have you ever heard any thoughts on that?[/QUOTE]

The only thoughts would be my own....I think when we pray for others it's less selfish & giving of ourselves almost like a "communion of saints" working for God's purpose....which all goes to the Golden rule of loving others as we would like to be loved. Taking care of our brothers is a service to God so in serving God we are better able to serve one another. I gues that's how i see it, and like you, I do notice that praying for one another is more effective than for ourselves because sometimes when we pray for ourselves we may be asking for something that is not necessary but when we pray for others we are better able to pray for what is really needed. Like when I pray for you I pray for God to give me the words of wisdom to say what you need to hear at the given time. Thus I am praying for both of us...Goody :angel:
Heartland ~ I just wanted to let you know that thanks to you & your prayers my mom & I received the best Mother's Day ever. :bouncing: While celebrating Cinco de Mayo with our friends last night, my brother called sounding happier & with much relief stating...."This is the first day that I finally can say that I am feeling like myself again!!!" :D Goody celebrated with a double shot Margarita :jester: It was the best news I coud have heard & knew that it would be an especially Happy Mother's Day for my mom.

Today was great.....the girls made me breakfast (we all slept in) & I got my favorite of Honey bunches of Oats with fresh Blueberries. We watched "Stella" together as well as another girley movie called, "Follow the Stars Home". And then Goody got her surf & turf meal for having been jipped last Mother' day in preparation for my surgery and I was in awe of the 2lb lobster that Tom had picked out just for me :bouncing: It was great. Got 3 new books to read and some bulbs to plant at the summerhouse.....it was just a fabulous day.

Well.....just wanted to give you the good news and thank you for being part of it. (((((HUGS)))))........Goody :wave:
[QUOTE=heartlandguy]Goody, I really enjoyed your reply. Even though I am quite far removed from your brother, you have always made me feel like I know him. It makes me very happy to think that my prayers may have helped in some way. I imagine a chorus of prayers from your many friends and family are what made the difference so I’ll accept your thanks for all of us. Please update us periodically with his condition so we know that he is continuing to improve. [/QUOTE] Yes....you seem to have the honor of knowing my family extended & all.....Goody just can't hide the fact that family is important to me and so you are bound to be pulled into the midst of it!!! I will certainly keep you updated and I expect it to be good news for a while. ;)

[QUOTE=Heartland]I saw from several of your posts that you must have had a wonderful Mother’s Day. With your girls watching movies with you and passing the tissues, it must have been quite a sight. I believe you told Genster before how much you love lobster so the two pounder must have been heaven. I hope the beef for the surf and turf was from Nebraska… you deserve the very best!

We had a great day, too. Mother’s Day is the perfect day for good news. Thanks for sharing yours. [/QUOTE] Yes....it was quite the Mother's Day :D Seemed to make up for some not so great ones ;) Would've been nicer spending it with my mom but I've learned how to share her with my brothers.....she was down in Charlotte with my other brother for my nieces Communion. We couldn't go because K. had an important college test to take.

Funny story about Lobsters....MBF who always gave me advice on dating, told me when Tom first took me out for a nice dinner to a seafood place...."Make sure you never order lobster....it's not only expensive but messy and if you really want to keep a guy you never order lobster!!!!" :nono: And for the longest time I didn't....in fact I think I didn't until after we were married :jester: I shared that story with Tom and he comically said....."She was absolutely right, because if I ever saw you eat a lobster the way that you do I might just have run the other way!!!!" But then again....he does know that I am better than one of our four fab women who sucks every bit of juice out of the legs and leaves nothing but the carcass :D She even eats the green digestive gunk :eek: Not, Goody, I know where to stop :jester: When I was pregnant with K. we went down to the Florida keys and Tom speared me a lobster while snorkeling & cooked it up for me....so although I was lacking in lobster in our dating years, Goody has never gone too long without her lobster :) ........Goody :wave:

PS ~ Do I sense that you have some good news to share as well?????
Okay....spoke to my brother who continues to do well. He has been out boating over the weekend and took my SIL out to brunch & dinner for Mother's Day. So.....it sounds as if finally things are much better & he is approaching more normality in his life. Thank God :angel:


Well....I guess that's the latest....again thanks for your continued support & prayers......Goody :wave:


PS ~ Have I mentioned to you lately what a wonderful friend you are????
Hi my name is Jen, i'm 30 yrs old and was just diagnosed with POTS this past monday.I'm married with a 3 yr old son. I was admitted in to a local hospital for testing after months of being very sick. It had started last november with uncontrolled nausea, vomitting then got worse with lightheadedness and dizziness to the point i was on my hands and knees crawling. I started getting severe headaches but took them as migraines because i have had them for years. It got to the point i could not function on a daily basis anymore and still can't. I eat salt out of the palm of my hand because the craving is so bad for it.

About 8 weeks ago my BP dropped in the dr's office to 62/40. My normal is 90/60. Was still coherent to my and my dr's surprise. LOL..Went once by ambulance to the local ER but they were clueless because of the dizziness said i had inner ear inflammation (We won't go there). I started getting severe low back pain and abdomen pain which lead me to getting admitted to a regional hospital last week.

I am fortunate to have a wonderful family dr that believed i wasn't nuts and thought i had addison's disease and wanted further testing. I saw GI had abdominal US done and an Endo..BP hit the floor he wouldnt tell me how low but i'm sure the crash cart was out..because i "surprised" him. I woke to a BP of 64/42 and HR of 99. That was when he believed it was addison's also.

Called Endo in and they still stim test because my cortisol was through the floor. that came back low normal..which my family dr still thinks its addison's..wants further testing.

They sent in a group of cardiologist that i asked for specifically because of getting severe chest pain into my ears and back thought i was having a heart attack. They did the table tilt test on monday i was fortunate did not pass out thank goodness, but my HR did go above 130 within mins of being tilted. Had to stand there 30 mins feeling dizzy, nauseated and sweating like a pig.

My cardiologist is a god sent explained that i have a rare disease called POTS that he maybe diagnosis every 2-3 yrs and has never diagnosised it in a woman of child bearing age. I don't know if that should make me feel priviledged or not..lol since he has been a cardiologist for over 40 yrs.

He has started me on Midodrine and Florinef, Reglan and Protonix..didn't want betablockers because of my bp. In the process of getting Jobst pressure stockings. The medication has worked somewhat.I have my good moments and my really bad holding the wall or crawling moments praying to get to the bathroom moments.

I have a full time job at a veterinary hospital that i stand all day..was stupid enough the day after coming home from the hospital to go back (wed) for a meeting and thursday (half day) paid dearly thursday and fri and now today.

My memory is worth nothing lately..but i guess lack of oxygen to your brain can do this. At least now i'm not crazy and i'm not alone.

My husband and i are taking it one day at a time right now not sure about working looking for other employment probably or might have to go on disability if it gets no better,i'm at a loss right now. I'm frustrated and starting to get depressed.

Lisa i hope you hav been getting some good days and Goody i hope your brother is doing better.

Jen
Jen....I am so sorry to hear all that you are going through. I truly understand how frustrating it must be in seeing my brother go through the same exact thing. Although they originally diagnosed him with POTS, this second time they have splained to him that he has a defect in his sympathetic nervous system...sort of like a miswiring in which there is a break in the connection of the part that controls his blood pressure and heartrate. He still feels that pressure in his chest and not 100% but with the meds he is back to work on a part time basis and is slowly increasing his hours as he is able to. He is on Catapress and an antiseizure med for the tremors which thank goodness allow him to function. For a while there he was worried that this may not happen. It did take time for the meds to help out so please give the meds a chance to do their thing. I really hope that they come up with a treatment that will restore you to a somewhat normal life that doesn't leave you feeling so debilitated. I know that must be so difficult being young and having a small child. Please know that you are in Goody's prayers that things will improve quickly for you. And know that I am here if you need to talk at anytime or if you have any questions.

((((HUGS))))).......Goody :wave:
Jen & Lisa ~ How are you doing???? I have been thinking about the two of you and hoping that there is some improvements and that the meds are starting to kick in. Jen, I definitely think you should get yourself to a good teaching hospital that can treat your condition. Don't stop until you find a doctor who will find the best treatment & one that you will respond to.

Heartland & all ~ Thanks for inquiring about my brother. Thank goodness he is functioning enough to work....he is going in half days...still feeling the pressure in his chest and generally tired with some headaches but most of which is under control. I am hoping that Jen & Lisa will get the same type of response. There is nothing like the feeling of not being able to do the things you so want to do and having to rely on others and the side effects of the meds is sometimes just as bad as the condition itself. But thank God, my brother is feeling more himself. I'm praying that it will be the same for everyone here soon.

((((HUGS))))) and prayers to all ~ Goody :wave:
I am actually afraid to even say it...things are actually going VERY well. My dr. put me on a few new meds last week and they are doing wonders!

I started taking Midodrine for my bad dizziness that I was having after I was up and walking around for 4-5 minutes. I have been taking the meds only in the morning (normally you take it 3 times a day, but not less than 4 hours before bedtime, since it could cause your blood pressure to shoot up by just going to bed!). It is working, but I can start to tell that is wearing off in the early evening. So today we add a dose in the early afternoon. I am hoping that that totally helps. I have had VERY few dizzy spells at all and have had no issue with being up and around - it has been GREAT!!!!!

Then I was getting AWFUL chest pains, having trouble breathing. I was taking Bextra (which was recalled, but was working great) but then couldn't get anymore, so we switched to Celebrex but that I had an allergic reaction to and it put me in the ER (I couldn't breathe and my throat started to close), so the final option was Mobic. After day 2 - no chest pain, no trouble breathing! The only bad side effect is a burning scalp - which I can put up with since it is only really bad about an hour after taking it and it lasts for a few hours. So today we also upped that to include an evening dose, since I am starting to feel a little bit creeping in in the evening.

I am also having Lidocaine treatments for my right elbow and my head. They also have been going well...no problems during treatment (which I was having TONS before - I started to even have kidney problems). But it has completly taken care of the burning behind my arm and I have noticed that it also has started working on the majorly painful spot within the inside of my elbow. The only problem is that once we stop treatment the pain comes back. So I think that we are going to talk about an infusion pump that will constantly pump in Lidocaine! Maybe that will completely make it go away. Right now I am going in twice a week for 2-6 a piece to get pumped full of Lidocaine. The only bad thing is that it is not working AT ALL for my head. I am still getting major headaches and the muscles in my neck are totally cramping constantly. I am not sure what to do about that anymore. They are telling me that they think Botox injections would work, but my insurance refuses to pay for it. And I cannot afford a $1000 per treatment. So I am not sure what to do about my head.

Here is the only bad part, last night my 2 year old son threw a toy at me and broke my nose (this will be the 3rd time it has broke in 5 years!). My older son broke it when he was 9 months old (he had a temper tantrum and threw his head forward and crushed my nose). Then my 2 year old broke it when he as 1 - he also was having a tantrum. Then last night. My 2 year old did't like something my husband said, so he threw the toy - and it smacked me right between the eyes and POP!, pain and I couldn't see. Then came the purple under the eyes and the bridge of my nose started to swell. This morning it was really red and the spots under my eyes were bruised - but at least make-up helped to cover it up. Unfortunately, my daily dosage of methadone was doing NOTHING this morning and it got worse while trying to work at my computer. My eyes were straining too hard. So when I talked with my doc I asked if I could take anything on top of the methadone. So he told me that I could add toradol on top of that. At least that has taken the edge off the pain. It still hurts to the touch, but at least it is not the throbbing pain I have had all day.

So...things are finally go well. The only thing is that things are taking a while to heal. I have tons of IV sites from the past month or so that are refusing to heal and go away. I am very concerned about my nose not fixing itself. I am guess that this is due to the Addison's. I have upped my daily dosage a little to try to help.

Also, the past 2 months I have started to get lumps in my breasts. The 1sy one I found got me into the doc right away. They checked it out and said that it was just a cyst. Well, now I have found another on the other side, and it is MUCH bigger. I asked my internal med doc (not my family doc who I went to for the 1st one and whom I am supposed to see this next month just as a followup) about it all. And he said that the Nadolol that I have been taking can tend to cause these type of things. I have never had anything like this in all my 32 years and then I get 2 within 2 months? I am just concerned that this new one is something. So, I will see when I go in for my follow-up, even though my internal med doc thinks it is nothing.

So...Things seem to be shaping up...I hate to even say that for things may just start to fall apart and I will end up back at the beginning.

Thanks for checking in on me. I am still alive. I have started a new business, so I have been awfully busy getting that going. I finally have a littel energy to think about something else :)

Amazing what a few drugs can do, eh?

I hope everyone has a good evening! I will update soon!

~Lisa
Wow...Jen, you have had some time of it. I agree that the meds do take some time to take effect. I would definitely try what they perscribe for at least 2 weeks to a month and make adjustments from there. My brother is finding that a betablocker for the blood pressure (catapres) and an antiseizure med for the tremors and headaches is working well. I would try that combo for a while....it did take him a good 3 weeks to feel better at least in terms of having some type of normalcy in his life again. And that was after almost a month in the hospital trying to figure things out and then back in for complications. Please know that there is a light at the end of the tunnel but that you are going to have to find the right doctors to get you there. Don't stop until you find one. My sister in law is a very take charge person, thank God, and she wouldn't stop until they got to the bottom of it. She told the doctors that my brother was still young 43, and couldn't live like that. And they listened. You & your husband need to do the same until you find a treatment that is going to work. You are so young, Jen, and shouldn't settle for anything less than a life that you can somewhat have normalcy. Please remember that. Give these meds a chance.....and yes, they shouldn't be taking you off them so quickly......some you need to be weaned off of. The doctor's you should be seeing are a good cardiologist and neurologist. They should work as a team. Find one or the other that you trust & have them call in the other that you need to follow you as well. That's what I would advise after you try this regimen for a few weeks. If you are not any better you need to go out & insist that they do something to get to the bottom of this. I honestly think you have a sympathetetic nervous system defect.....something rare like my brother that needs a good patient open minded doctor to treat. Don't let these doctor's intimidate you into accepting this quality of living...there is something they can do to make it better & you shouldn't stop until you find the doctor who will make it happen. In the meantime...please know that you are in my thoughts & prayers & that I am here to listen. (((((HUGS))))) ~ Goody :wave:
I know that I shouldn't have made any "Things are going great" posts the other day...because don't you know it, Wednesday things started heading backwards. I had a Lidocaine infusion on Tuesday, which went just fine...but then on Wednesday I started to get an awful, awful headache...things slowly just started to get worse.

On Thursday, I went in and had my new lump checked, which he said was a little big, PLUS he found another! (that night I even found another one!) He said that he thinks that it is just another cyst, but to watch it. If it increases in size AT ALL, I need to get my butt in and have another mammogram and ultrasound. If it doesn't change, but is still there in 3 mo (for a follow-up exam), then they are going to do the tests too. Hopefully it goes away. My concern is that the new one I found is up in the armpit area - which I hadn't checked before and neither did the doc. I am just going to watch it and see what happens.

Anyway...I go to another dr appt for my arm Thurs afternoon...the good thing is that I get to up my hours from 6 to 7 a day at work, the bad things is that my headache was getting so bad I could hardly hold my head up, my eye was watering AND I was to the point of throwing up. Then the dizzy spells came back FULL FORCE! I tried some additional pain meds for my headache - didn't help at all.

Friday the dizzy spells were awful. I almost fell in the parking lot and almost fell down the stairs at work. My headache was still awful. I had to go to another infusion on Friday...My doc came in to talk with me since I was telling the nurse how bad the past few days had been. He is just at a loss at this point. I am literally seeing him 3 times a week right now because of all of this. We thought we finally had the right mix of meds because I was feeling so good. My arm is going well, but everything else just seemed to take a turn for the worse. We were talking about the headaches...he felt the back of my neck and back, he couldn't believe how rock hard it was. So, after my infusion he wanted me come to his office for some trigger point injections. We think that going back to the chiropractor is a good thing , so I think that I am heading back there next week. As for the dizzy spells, he wanted to see how this weekend went before we decided anything. Oh...and it sounds like I could have to have the infusions 2 times a week for the next 6 months to a year! He is hoping that they may end sooner, but since I was sick one week and the pain came back immensely, he doesn't think it will any sooner. At least the infusions ARE helping though...one thing down.

I had my infusions - everything went well, although I slept through half of it. After the infusion I went to his office for the injections. Well. while sitting there I just about ended up on the floor - luckily I caught myself on the chair before that happened. He came in and asked how I was feeling since the infusion. I told him about the major spell I just had. He said, "I could have picked you up if I had too"...So I got up on the table to have him do the injections. He came and sat behind me on the edge. He stuck the first one in and MAN did it HURT (it normally only stings at first and quickly goes away). Then he was going to do the next one and I told him and I needed to move over on the table or else I was going to pass out and end up on the floor yet again. He grabbed me and told me he had a hold of me, that he wouldn't let me fall off. LOL. Then he injected me 3 more times. After the last one I couldn't breathe..I told him no more. He was going to do one in my neck to try to calm the muscles down, but there was no way I was going to handle it. But we decided to stop taking the Lamictal. One drug off my schedule. The last time I tried stopping it, the headaches were way worse. So, we'll see what happens here.

So, today (Saturday) the dizzy spells have been VERY BAD. I am having a lot of issues standing up and walking too far. I almost passed out about 10 times in the store today. I am having a little hard time seeing out of my right eye, and the pressure in the back of my head is incredible. I am having these weird breathing feelings again too.

I just don't get it!!! I have done NOTHING different to set this off like this...I am going back in for another infusion on Tues and we are going to talk about how the weekend went. This just makes NO SENSE!!!!

I think that I am going to go crazy...Just when you think you are getting ahead, you go two steps backwards. I has just been the feeling the best I had in 2 years...I thought FINALLY...argghhh!!!!


Jen -
Try to keep your head up. As you can see, just because they think that they know what you have, doesn't mean that they can even fix it. I hope that you can find someone though that will listen to you. Please keep posting here and maybe we can help you find some answers.

Goody2Shuz-
How is your brother doing? I keep thinking of him each time I am talking with my docs about all this crap. I hope he is getting better.

Anyway...I hope you all have a good weekend and enjoy the holiday!

I'll update next week and let you know what we have decided to do.!

Lisa
Well i can honestly say i have now passed out for the first time in my life. I had a really bad day Tuesday and was sleeping on the couch (thought for a short nap) which ended up being 3 hours! When i woke i took time to sit up then stand up and i didn't feel "right" wham bam everything went black and when i opened my eyes i was on the couch again..thank goodness soft landing. From there just got worse vomitting (my husband is probably getting jealous of the toilet since i spend more intimate time with it lately). The dizzy spells were horrible just kept me in bed or would of been on my hands and knees crawling to get where i wanted to go.

My husband and i were trying for a second child when all this came to a hed, so went to my GYN yesterday for some information and input, Well, well he strictly forbid pregnancy right now (no duh!) until he gets more info and we get a better handle (i hope) on this.

Today is a new day having dizzy spells already and waiting to see the ENDO, hopefully soon going to call again. The medication has its good moments and its not so good moments that it helps, wears off fast.

As far as my job my boss is very understanding right now. I have a very physically demanding job so i was told i can't go back to work until this medicine starts working all the way or i get better.

Lisa hang in there they may have to up your dose of medicine the midodrine and floricef do help but your body adjust quickly to them and they start to wear off. At least for me thats what i'm finding.

Goody i'm so glad your brother is back to work, thats great i wish him well

You are both in my thoughts and prayers...

Jen
I ended up back at the dr today...I just can't handle the dizzy spells anymore. He gave me a good shot of cortisol to see if I needed an additional stress dose. He wants to put me in the hospital, but I said that if I don't have to be there I don't want to be.

So, we are lowering my Nadolol dose to 10mg in the am and 10 mg in the pm - then we are going back to the Midodrine (we stopped it for a week). If things are not better tomorrow I think that I will end up in the hospital this weekend. I had another infusion today too...then started to get majorly dizzy and an AWFUL headache. He gave me Toradol to help with the headache.

For now I am home...for how long who knows. I just don't get how I can have almost 2 weeks of no dizzy spells and doing great, then WHAM a total 180 and back to incredibly awful.

We talked today too about going on some anti-depressants...but not until next week since we are screwing around with my other meds through the weekend. I will try anything if it will help at this point. We also talked about trying a nocatine (sp?) patch as well - that is supposed to help with dizziness I guess - some vascular constrictor properties I guess. Who knows....

Anyway....

Jen -
I hope you are feeling better and can get some answers soon!

~Lisa
I am so sorry to hear that you girls are having such a bad time of things this week. Please know that I continue to hold you in my thoughts & prayers.

Lisa ~ Seems that only a week ago things were going so great for you. Perhaps it's only a matter of them adjusting the meds a little bit...it must be so frustrating feeling almost back to normal and then WHAM almost landing on your face while walking. Ireally feel for you and hope that things get better again for you. How are you feeling since the cortisol injection??? I wouldn't worry about going on the antidepressants. sometimes when you have to deal with a chronic condition and it's affect on your life you really need the antidepressants to help you through. I was on Wellbutrin years ago for a chronic back problem and it helped....you won't be on it forever but it'll help you deal mentally and emotionally with the limitations and changes that your physical limitations are putting on you. And it's a good idea to wait a little bit until you adjust to the other meds.

Jen ~ Sorry to hear about your setback as well. I know this all must be so scarey for you and I hope that soon things will get better. I think your GYN is right about holding off on a second baby for now....with the meds you are on and the physical stresses your body is already enduring it wouldn't be in your best interest to put the added physical changes your body would incur with a pregnancy. The time will come for baby #2 and you will know when that time is best for both you and your baby. For now you just focus on the mommy being healthy.

Thanks for asking about my brother. He continues to do well although he states that he does not feel normal. The meds allow him to function and unfortunately stress seems to worsten things with this type of condition which you girls probably have noticed. And in life it is almost impossible to remove all stress as much as we try to. ;) He still experiences the chest pressure, headaches, and tremors but the meds seem to keep it under control and tolerable. He just told me about how thye check his pacemaker every few weeks over the phone. He places something on his wrist & connects it to the phone and a computer reads the information to determine whether the settings are within range. It's amazing how things are done :D

Well.....I am hoping to hear some good news from you two next time you post. Meanwhile know that you both are in my prayers....Goody :wave:
Well girls i'm almost at my wits end..the headaches are back full force..nothing seems to help i usually let it runs its coarse, which usually a day and overnight..starts with a bad dizzy spell. I have had blurred vision and loss of vision now at times. Cognitive skills have been having issues, can't say what i'm thinking or words come out slurred or not pronounced right. When i walk feel like i'm drunk most of the time with out the luxury of alcohol to get me there..lol Still waking up 2-3 times a night to go to the bathroom. Last week started with severe cramping in my legs nothing seems to help gets worse at night, endo not sure if that is a side affect from the florinef or not. Dizzy spells are still out of control woke me up 3 times out of sleep with them, get them sitting ,laying or standing and walking. Went to a neurologist was useless he gave me no answers and kicked me back to my family doc. Going to see another neuro and see what he says. Just confused about the cognitive and vision issues...not sure if it is POTS related or something else. My endo thought possibly the starts of MS which my MRI showed 2 small white spots the radiologist thought were secondary to demylating disease such as MS, gliosis or blood vessel ischemia. But no one wants to address that possiblity and says they are nothing and passes the buck to someone else, with no answers. Gotten to the point hard to do daily living , i can't shower standing the whole time have to sit 2-3 times, then dry off and sit , then get dressed and sit some more then brush my hair maybe if i'm not to exausted. I have been sleeping 80% of the day. I'm so angry and frustrated right now its unbelievable. My endo thinks i should maybe go up to Columbia University they are doing research on POTS and see what they say. My son doesn't understand i don't feel well at the age of 3 he wants his mommy to be chasing him around and having fun like we use to and i can't, it tears my heart up cuz i just want to be normal again and get some answers.MY dear , loving husband what can i say he truely is a gift from god...i think he is about to beat up some drs though..heehe if we don't get more answers soon. Cuz this isn't living, haven't driven in 2 months and will be almost 2 months since i have been at work, i'm sure they will not hold me job much longer and not sure if i can ever do it again anyway.

Lisa- i hope all is well with you and the medicine is working for you, i'm praying that it helps and you are doing well with all this unlike me. You are in my prayers

Goody-i hope your brother is still progressing well and not having any serious problems. Hopefully he is returning to a normal life for himself.

Jen :confused:
Oh, Jen....I am so sorry to hear how things are going lately for you. I can only imagine how this is taking it's toll on you. Thank God you have a husband who supports you so well. I feel for you being a mother myself with a disability since before my children were even born and yet it doesn't even impact my life as this condition seems to have on yours. I know that this all must weigh heavily on you in terms of your limitations....please most of all do not allow it to depress you....if you feel this way speak to your doctors..there was a time that I had to go on Wellbutrin, it is a mild antidepressant that alot of women are on for menopausal symptoms and it may help until you get to the bottom of all of this. I think it is a great idea to go to Columbia and get a total workup until the find the treatment that will give you back your life. Keep on seeking out medical expertise until you find out a way to help restore your ability to function on a daily basis.

As for my brother, I spoke to him yesterday and was amazed at how well he sounds. The meds seem to be helping him, he is back to fishing & boating which he loves and he is coming for a visit to celebrate Father's Day and have a mini reunion with most of my family minus my other brother. He arrives late tonite and I am looking so much forward to seeing him since I haven't since he had been hospitalized. I haven't seen him since January when we made a trip to Las Vegas together. And I really miss him. When I was talking to him last night he must have told me he loved me at least 3-4 times.....something that isn't usual for him. I told my husband that it must be the meds.....and perhaps I should give him a few doses. ;) But it was wonderful to hear the life back in him through his voice that I haven't heard in so long. :bouncing: I know that when you have experienced something like what you and my brother have, where your life has been so drastically changed and all of a sudden you can do the things that many of us take for granted again, you can't help but be happy. I am praying that you & all here will be able to experience such happiness soon.

Please continue to keep us posted and know that each & every day that you are in my thoughts & prayers....Goody
Well just wanted to update you on what has been going on.Got good news and bad news. I went to see another neurologist (my old boss). He felt on my first exam that i did have neuro issues going on unlike the other neurologist. He felt it was demyelating disease. He did a BEAR test which checks your brain wave function which came back abnormal for 2 of the my brain wave functions. He did an SEP of my lower extremeties (which is basicallly like put a tens unit on your nerve and seeing how long it takes to get to your brain) that also came back very abnormal. He then did a VEP (visual envoked potential) which came back very abnormal (you stare at a black box in a center of a tv screen and white and black checkered pattern of boxes flash around it, you have to concentrate on the center box), which came back abnormal and showed even with my glasses on i was having vision problems.Then he read my MRI report about the "two areas of white matter", fortunately i had gotten him the films and when he looked at them he called my husband and i up to look at them with him, which i knew wasn't good from my medical backround i had seen 5 areas there actually was 6 areas very fresh and specific areas of demyelination present. Which blew him away how the drs could of missed this and with my clinical signs to boot. He started me on Solu-medrol (nice strong steroid) which i have to give myself via iv once a day over a period of 3 days by bolus. Just finished that this morning and removed my iv, what a great learning experience. Just call me Nurse Jen. lol He is also starting me on Avonex injections which i have to give myself one injection every saturday evening for at least a year. So no baby for at least a year, very disappointed about that. He is hoping there is no permenant damage yet and we have caught it early enough and the Avonex will stop the progression or slow it down. He said my prognosis is good but nothing is a guarantee in life and only time will tell. If it does help and stop it then it most like we have caught it early enough if it does not or i relapse then i have MS. His PA told me he does not like to label it as MS but that is probably most likely what we are dealing with. It was probably in a bad exasterbation period when it triggered the POTS which has gotten better. My BP is alot more stable still get a tachy HR at times and chest pain. At least we know what caused it and now how to treat it. I start the Avonex this sat evening never gave my self an injection let alone intra-muscular , my husband volunteered if i chicken out. Told i should be fine besides he can pay me back for being so cranky over the last 9 months..lol not going to let that happen. Well only time will tell what is going to happen but i will definetly keep you updated on my progress.I'm trying not to let my diagnosis get me depressed and trying to stay very optimistic through this all.

I hope everything is going well with you both and have a wonderful 4th of July weekend and a safe one. You are both continually in my prayers.

Jen :)
Lisa,
I know I haven't been a part of this discussion for a long time but wanted to just say that I am very sorry you are still not feeling well.

Your vision loss is of great concern. Has anyone ever performed an MRI of your PITUITARY (not just your brain) to see if you have a mass pushing on your optic chiasm, the area where your optic nerves cross at the base of your brain? There are certain types of pituitary tumors that can cause your symptoms, including vision issues. This is not a part of being dizzy, Lisa. You have to see an ophthalmoloigst and pronto to be certain you do not end up with permanent damage. Regular docs often don't know much about vision.

I know I have asked this before but you have never answered...Have you had your aldosterone levels checked? And..are you on florinef as well as the other medications?

I know one person with POTS and she has said countless times that with all of the medications she is on, the one thing that helps the most is taking lots of salt with her diet.

I really hope that you can find some relief soon. Please take care of yourself,
Sadie
Hi Jen & Lisa :wave: Wow you guys have been busy and what I love about you two is that even though everything has turned your worlds upside down you still have great attitudes and look at things in a positive light which I truly believes makes a big difference in how things work out.


Jen....what is the latest??? Are the doctors still leaning towards MS??? I hope they caught it early enough that it won't cause you too much pain and debilitate you too badly. I think at least when they find out exactly what it is that we're up against and the treatment for it, even though it is something that we weren't prepared for, it makes it so much better to accept rather than living with the unknown and pulling at straws as to how to treat it. It looks as if you may have your life back, one that you can manage and overcome the obstacles that come before you. With your wonderful sense of humor and outlook on life...there is no doubt in my mind that you will be okay. So we have to wait another year for a baby....we'll be here to celebrate that good news with you when that time comes.

Lisa ~ I pray that they come up with a diagnosis and treatment plan that works for you as well. Do not worry about your 6 year old, so long as he knows that you are okay and that he is helping out and supporting you he will understand. Your family will celebrate, as will we, once they find the right treatment that has you feeling better as well. We will continue to pray for you until that time comes.

My brother is doing quite well.....I saw him Father's Day (well barely) he was so busy towing 10 kids on a banana boat with his jetboat.....everytime he came back in there were more kids lined up to go out!!! I had fun just watching him have fun after all that he has been through. I am sure that you guys will be back to living you lives again too. ;)

((((HUGS))))) & prayers ~ Goody :angel:
Sadie -

I am not on florinef...those levels when checked were okay. I did talk with my dr today about the vision stuff...when I went in I had such a pain behind my right eye it was AWFUL. We had to turn out the lights throughout my infusion treatment. My doc came in to check on me and we talked about everything plus the pain I was having. Unfortunately, it was also causing total blurriness out of my right eye, I couldn't focus on ANYTHING. I told him that I know if I went back to the eye dr that my prescription would be completely different my vision has changed so much. He asked when the last time I was to the eye dr was, I told him April, which is when I just got new glasses. He said my vision should not change like that that fast and that if it were headache related it would be gone when the headache was gone, but it is not. He told me that he is VERY concerned about it. He is calling the opthomologist tomorrow to get me in this week if possible. I told him too that I felt as if I was going to totally lose my vision this past weekend. He didn;t like the sound of that either. So, I am seeing him again on Friday. We are playing with some of my other meds to try to settle the dizzys. We are cutting back on the Nadolol and if that helps a little, then he is going to place me on some meds along the line of Ritalin. It should be an interesting week. I am a little concerned about this vision stuff though, I know something isn't right. I just really couldn't handle any bad news right now.

So please keep your fingers crossed...I'll update when I can.

Goody - I am so glad your brother sounds like he is doing well!

~Lisa
Well here is the latest news on me..it has been confirmed i do have MS. We are hoping we have caught it in the early stages. I did get 3 iv bolus treatments of Solumedrol (nice steroid) which i infused myself at home. Just call me nurse Jen..lol.My husband was wonder if i was going to turn into ms. universal muscle bulging lol. I have also started on injections of Avonex which is one of the top intraferon beta 1a for the treatment of MS,which my husband so loving injects into my thigh every sat. Oh did i get sick from the first dose of that. My poor husband was ready to rush me to the hospital..i calmed him down and said let it take its course the phamplet and the dr said i would get flu like symptoms..man they weren't kidding that was an understatement. My vision is getting worse and still have the nasty dizzy spells and being off balance. Went to a pain management specialist monday,who was nice enough to clear up the fact that i do have MS in a very upfront and honest way..lol I have had such severe pain in my low back, legs and feet its been horrible. It has made it hard to even walk or sleep. They gave me darvocet and flexiril before i saw the pain management dr. that did nothing. I had an MRI of my lumbar spine done, which showed a herniated disc and mild spondylosis.He told me my pain is do to the MS and he strongly feels i have something wrong with my autonamic nervous system, some type of abnormality and wanted me to have a cortisol stress test done. he thinks the pain is a combination of those two things. He feels it has nothing to do with the herniation because of the severe cramping i get in my toes, feet and other muscles in my legs, which can start with my feet and go up my legs, also get numb areas and severe tingling. He started me on nortriptyline for the pain not doing to much at this point but will increase the dose next week. He also gave me amantadine for the severe fatigue. Don't care for that much makes me very anxious and gives me the shakes, makes my head feel weird, so we are going to pass on that, besides makes me even more tachy then normal lol like i need that. He told me everything will take time to work and hopefully there is no permanat damage done. We just pray that the Avonex stops the progression, or at least slows it down. But the drs think that the MS triggered the POTS which is slowly staightening out my bp usually 90/56 HR is still 90-140 give or take lol. Not running any marathons yet but maybe in a few months. The heat has really made things worse i go out mostly in the evening when it cools off ,if i go out during the day i need shade or get some serious headaches and just feel really bad. The headaches did start to get better but are slowly getting worse again. Who knows i try not to dwell on it and take it as it comes.

I hope you are doing well Lisa you may want to try the florinef it does help also with your BP thats why the dr had me on it and the midodrine together.

Goody i'm so happy for your brother he sounds like he is doing well, i'd love to be on that banana boat get tugged around sounds like alot of fun...lol

Jen
Jen & Lisa ~ It's been rather quiet here, just thought I would check in and also give you a little update.

Jen ~ I hope that the meds they started yo on for MS are continuing to give you some relief. Please give us an update so we know how you are doing.

Lisa ~ You sounded quite miserable last time you posted. How is your BP doing without the evening Naldalol??? I was hoping that somehow you would adjust and it would improve things.

Well Goody has an update as well....my brother's chest pain has returned and his doctor thinks that he may be rejecting the pacemaker and starting with an infection again. He is back on the prednisone and will see the surgeon sometime this week/early next week. I just found out that his diagnosis is Autonomic Failure and very rare. He was beating around the bush when I asked him exactly what his diagnosis was and it doesn't sound good. Apparently it will be a case of juggling around meds in order to allow his blood pressure & pulse to function somewhat normally. It's difficult to even understand how this happened....but it only gets worse with stress and my brother's life is full of it. He's on a third marriage, has 6 kids, 2 ex wives and lives his life with visitation schedules I couldn't even manage. His newest wife is wonderful in terms of being supportive but it's almost as if his body is reacting to the craziness in his life. My 16 year old daughter is staying the summer with him as a mother's helper which I hope is taking some of the stress off of him. From my sister in laws reports she is of great help to them and manages the kids well allowing my brother and SIL some time to relax and go out on their own to recuperate from daily activities. I do find some comfort in knowing that my daughter is in a way reducing some of the stress.
I guess I will know more next week about what comes next.

I hope to hear some updates from everyone else as well. Please know that you are in my thoughts & prayers ~ Goody :wave:





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