It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board


Lupus Board Index
Board Index > Lupus | 0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z


I hadn't been checking my thread because I hadn't any replies for a while. I was happily surprised to see several replies. I discussed the idea of the mitral valve prolapse syndrome as the cause of my autonomic nervous system disorder with my doctor, but he was reluctant to even accept MVP syndrome as a true disorder. I happily handed him the information I had printed out on the subject. The treatment that was recommended from the article I read suggested things that everyone should probably follow such as drinking plenty of fluids, avoiding sweets, and exercising, so he realized that despite his skepticism, it was sound advice. He gave me specific instructions on the extent of exercise, and warned me not to over- exert myself. He wanted to increase my beta blocker, but thought again when he saw my low blood pressure readings.

Just like you Laurie, I have both high blood pressure spikes and low dips, which, as I understand it, is classic for this autonomic nervous system disorder, dysautomia. I am happy to say that my high spikes are occurring much less frequently, but I am now having more low dips.

To answer your question, I do not know for certain that the spikes are a result of adrenaline, and I obviously cannot prove it one way or the other unless someone takes a blood sample at the time it is occurring. However, when I am "zapped" as I call it, I wake shaky and am super-charged with energy just as if I had been given a shot of adrenaline. We all know how it feels to get an adrenaline rush. In the beginning, when I was first having the most severe symptoms, I began having a hypersensitive startle reflex to noises. I would get scared very easily with the least provocation resulting in my heart pounding, just like it would be if someone snuck up behind you and scared you. Then, when these adrenaline- like surges would occur, my heart would pound, etc. just like that, but on a grander scale. This is the best way I can explain it. When I get zapped, my blood pressure spikes and I usually can't go back to sleep for a while, if at all. Luckily, lately, my zaps are occurring less frequently and seem to occur around 4- 6 am, so when it happens, I just get up (and usually clean up the house, using all that extra energy). Usually, I am hyper for most of the morning and have found that exercising seems to help (maybe using up some of the adrenaline, or whatever hormone that acts like adrenaline.)
I don't have all the answers, and neither does my doctor, but he is working with me to get better. Although I continue to wake during the night, I have been able to sleep for 2-3 hours at a time and am falling back to sleep more quickly each time. In an effort to sleep better, I have made it a rule not to take my blood pressure at night unless I can't go back to sleep. Sometimes, my blood pressure is up (usually not any higher than 150 or 140/ 90), sometimes not. But, the higher spikes (160's) seem to occur with the adrenaline- like surges.
I continue with hot flash- like symptoms and have better days when I have less flashes. My face and neck get bright red and I get really warm, then sweat. This is almost always preceded by a feeling of not feeling good and even some nausea. Everything seems to set off the flashes, such as getting near something warm like the dishwasher or the stove, or exercising, sometimes nothing at all. Interestingly, my blood pressure usually goes low after the flash. I'm not having the chilling/ shivering I used to have, but the weather is getting warmer.
I am still sensitive to loud noises, but it is better some days. I am driving now, and have been taking short trips taking the boys to their sporting events, etc. I went to the grocery store with my husband today for the first time in months and tolerated it just fine. I made the mistake of going to the mall with my husband to get clothes for the boys. Every one of the clothes shops had loud hard rock music blaring and I had to leave and find a quiet place. Lights are still brighter than usual, and found I was better able to work on taxes, read, and look at the computer when the lights were dimmed. I still had to take frequent breaks and sleeping better definitely helped from one day to the next. I actually had to quit reading for awhile, and stay off the computer.
I remember having problems with this years ago when I was sleep deprived, so this may be related to that. My eyes and nose are dry. I do have Sjogren's (sp?) syndrome, but don't know if this is the cause. I have had to apply eye drops and nasal saline gel frequently. I read somewhere that this is related to this ANS disorder.
My anxiety went away when I stopped the Atenolol and then came back to a lesser degree. It may be related to the sleep deprivation or side effects of the Bystolic, although my doctor refuses to believe the Bystolic is the cause. Could be related to menopausal symptoms if that is what I am having. I will see a psychiatrist tomorrow for the anxiety, mild depression, and occasional obsessive tendencies, although they are much better since I have been sleeping better. Really don't want to add more medicine to the mix if I don't have to. I have only had to take a micro dose (1/4 of .5mg) of Xanax a couple of times this week, which helped.
I can't imagine working and having this, but you obviously didn't react to the beta blockers like I did. It is good that you have an understanding boss.
I have been adding new foods that I can tolerate to my list every day, and I do avoid bread, but tolerate flour tortillas and crackers. What foods have tyramine in them? My doctor disagrees with me that sugar stimulates the adrenal glands, and I have started consuming sugar- containing foods and drinks in small amounts and always with a protein, even fructose, for example, eating peanut butter with a banana. I continue to take Prilosec for my stomach, and taking much less antacids.
Were you ill with a viral infection prior to this? Do you have the hot flashes and sweating? I have been avoiding salt, but now that my blood pressure is going low (my last bp was 108/ 73) I am wondering if I should include some more salt in my diet.
At this point, I am just winging it. I will try reading more about the MVP syndrome and maybe post on the heart disorder board as goldyfm suggests, hoping for another piece to the puzzle. I am thankful everyday that I seem to be improving, with two steps forward and one step back. I will look forward to hearing your progress, and now that I know someone is reading this, I will check in frequently. As always, long-winded,
Nan





All times are GMT -7. The time now is 07:06 PM.





© 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!