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Hi Nikigrl,
I am so happy to hear you are finally getting answers!
The good news is that Postural Tachycardia syndrome also know as POTS is treatable and not life threatening.. POTS is not in anyway thought to progress to cardiac disease. I have researched POTS for my own interest and have learned a few things I thought I might share with you. I will try and explain Pots to you as best as I can.
The Autonomic Nervous System as you know is the so called "master" of organ function throughout our bodies, what this means is it involves control of our heart rate, blood pressure, body temperature, breathing, and even our digestive system. When we have a condition called POTS it's just our bodies inability to make necessary adjustments to counteract gravity from a laying to standing position. Which in turn causes all the symptoms you have been experiencing... Anything from the most common Rapid heart rate ~ more than 30 beats per minute from laying down to standing position, or a heartbeat greater than 120 beats per minute after 10 minutes of standing, dizziness, nausea, fatigue, Hypertension (high Blood Pressure), symptoms of "ANXIETY"... That being said, now you ask what causes pots?
Pots can be caused from anything as minor as viral and bacterial infections, inflammation, Chronic fatigue syndrome, it can be genetically inherited, as well as diabetes, and peripheral nerve damage, among other conditions.
Okay so how is pots treated, Well they say adding a high salt diet as well as lots and lots of fluid intake, I am guessing water, or gatarade, selective serotonin re uptake inhibitors also know as SSRI's, beta blockers, as well as drugs commonly known as Fludrocortisone and many others... So what I am saying to you is that there are "TREATMENTS" out there for this condition..
I am sure you Doctor's will find the one that is right for you. I think at this point you should be finding some peace of mind that you actually have a diagnosis and this diagnosis is very treatable. There are allot of people who have this disorder, and who are living normal lives. I feel the anxiety you are creating, is in-fact causing your symptoms to intensify.. You need to learn to relax and realize that you are not dying.. And once you are convinced of that you will see you anxiety level will drop, and you will start to feel allot better in this department. Your condition already causes inappropriate sinus tachycardia and on top of worrying all the time that you are dying this creates more tachycardia and other anxiety symptoms as well. So now you are dealing with two disorders!!! I am sure if your doctor thought you were in any danger of dying he or she would have had you in the office minutes after reading your test results.. You have to stop obsessing about death, I know that is hard I do it myself, and that's how I know first hand how it can actually destroy your quality of life, worrying all the time.. As we all know we are here on borrowed time anyway, we are all going to die someday that is just the reality of life, but obsessing about it day in and day out is not good for our mental as well as physical state of mind... The healthiest people die everyday in car accidents for example, that was their destiny, there is no good reasons for this and seems unfair, but we have only little control over what our "destiny" is going to be. So try as hard as you can to retrain your mind and stop obsessing over the fact that you are near death. You are young and hopefully have a lifetime of good health ahead of you. Focus on excepting what you have, research the best possible treatment, and try to live a normal healthy life to the fullest. Don't let life pass you by in fear.. I have spent years of fear and loss of quality of life from this, and at times that fear creeps up on me, but I have to keep reminding myself that I will over come whatever comes my way as best as I can, because I refuse to die or think I am dying at such a young age.. Try niki I know it's hard but you have come this far and haven't died yet! That's a positive thought..
Keep me posted and remember I am here to listen and give advice if you need it.. Your never alone when it comes to these thoughts.
Any thoughts Just let me know I am always here I hope this has helped ease your mind some... boxerlover:angel:
Hi Nikigrl,
Beta blockers help treat anxiety disorders, panic disorders, social disorders as well as trembling, palpitations, rapid breathing, sweating, Lightheadedness, and rapid pulse, by slowing down the nervous system. I myself was prescribed toprol XL but after taking it I was soooo sluggish.. I felt like sleeping all the time, which is totally normal until your body adjusts to the medication, I did notice the heart rate change, I usually run a fast heart rate 90's and over 100, and on the beta blocker my heart rate was in the 60's. BIG difference. I felt very very relaxed, and calm.. beta blockers also blocks the harmful effects of stress hormone on your heart.
I had a baby so I was stopping all medication treatment until after birth. You said you started taking them and saw a difference in you heart rate this is a good thing. I can't stress to you enough to stop researching all the negative things related to POTS. You are going to make yourself sick and drive yourself into a depression.. I am going to tell you a little something about myself.. I was diagnosed 8 years ago with Lyme Disease. I spent 1 1/2 years in my PJ's laying in bed thinking I was dying.. I was only 25 years old at the time.. I watched the world go by through a window on a rocking chair curled up in a blanket.. I was so weak I couldn't stand without the help of a parent or friend. I couldn't go to the bathroom by myself, I couldn't brush my hair put on clothes because I was so sick, I had to have my parents feed me, brush my hair, help me in the shower that's how bad I was... At the time If I read all the horrible things and terrible outcomes that other people had with Lyme disease I swear I would have died of depression alone! Instead I researched all the positive things, all the good success in recovery stories, all the best treatments etc.. and I told myself I was not going to give up I was going to recover..The mind is a powerful thing, I have mentioned this so many times you can actually make yourself believe that you are dying of a serious illness just by your thinking..
I know you say you have been diagnosed with pots and just because "other people" have had no success doesn't mean that you are not going to have success.. People die of Lyme disease, If I only focused on that my recovery would have been that much longer.
I think you should try to distract your mind as much as possible, read a book not on illness either, take a nice relaxing bath, try to catch up on sleep to refresh your thinking, watch a good movie... something other than the thinking process of death.. You will see that your anxiety end of this will be that much less by distracting the negative thoughts.. I know you are only 23 and want to be out with your friends having fun. Think of all the things your going to "promises yourself you are going to do when you get better.. Think positive things to look forward to not the horrible symptoms that you are feeling.. You may be surprised that some of your symptoms may disappear.. If your friends don't understand and help you through this rough time then they weren't a friend from the start.. A real friend would come over pop popcorn and rent a good movie for yous to watch and take you mind off things, surround you around POSITIVE thoughts.. That's a real friend. I am saying this because I know in previous post you mention losing you Boyfriend throughout all this.... You know something I married the man that stuck by me through my illness with Lyme, because I knew he stood by me through a horrible 1 1/2 battle with Lyme and he never gave up on me.. and you know what if he could stand by me through that he'd stand by me through anything, besides for the fact it only made me love him more to see him care so much about me.. That's what you want in a relationship nikigrl not someone who doesn't understand or only thinks of himself...
Yes you were told you have Pots but some of what you are feeling is also anxiety related.. Anxiety can cause you throat to feel closed, anxiety can cause you to feel fatigued.. Until the words come out of your Doctor's mouth that you are never going to get better and there is no hope for you, Not a second till then should you be thinking you are dying!!!! You mentioned your wisdom teeth are they removed? I am not sure the relationship between pots and wisdom teeth but I guess anything is possible.. Have you been tested for chronic fatigue syndrome? I had this second to the Lyme and I had allot of flu like symptoms... It's something you may want to mention to your Doctor. I think an appointment with your regular GP for blood test should be made again.. Rule out Lyme, rule out anemia and other things that can be contributing to how you feel, so you can put your fears to rest!!!
I had to be tested several times before the Lyme even showed up in my blood... I never had a rash, never seen a tick I just got sick.. If I didn't get re~tested I would have never know.. But don't go researching every illness you may or may not have until you know for sure.. believe me this not a good thought process to have... I think if you start changing your way of thinking you may surprise yourself. I know I should live my life to my own words of advice and I myself need reassurance at times as well, but most people who suffer from some kind of anxiety disorder do need that reassurance.. And that is why I am here for you.. Until you tell me the doctor's said you are going to die, I am only going to constantly reassure you that you are going to be okay.. When you are feeling down or depressed think of me and I will help you to remember that you nikgrl are going to be just fine.. And you will see when this over you will be only that much stronger as a person from the inside!!! You have to learn to just accept what your diagnosis is going to be, give the medication time to work and stop battling with your own thoughts.. You can actually create more problems then good. I hope this helps you and remember it's okay to feel sad and it's okay to be frustrated but don't drown yourself in that depression.. acknowledge how you feel from your emotional end and not so much the physical. Acknowledge and accept what the Doctors are telling you instead of the constant questioning of their diagnosis.. I always say exceptance is the first step to recovery!
Any thoughts I am here Boxerlover:angel:





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