? For People Who Re-Flare

[Relax86]

I seemed to have a resurge of all my symptoms. I was about 90-95% better from the flare of 2012, when driving home about 2 weeks ago I had a severe dysautonimic episode or storm. I treated it like it might be a single episode but soon thereafter most of my symptoms came back - low BP, elevated HR, digestion intolerance, lightheadedness, unable to exert myself. I used hydrocortisone to help control symptoms but I only use 2.5mg at 8am and 1pm; some midodrine, salt, water.

Strangely my symptoms made a weird turn on Thursday night which was my 2 week anniversary: I have a normal HR, which is low for me...around 70, my BP is normal to lower, I am extremely pre-syncope (meaning I totally will faint if I don't sit) weird responses to food, weird food cravings, nausea if I don't seem to feed this monster, calf and arch cramping and sometimes my thumbs, blood pooling in my hands (I don't pool in my feet because I'm an right amputee, and left side is rock solid muscle).

So nausea, cramping, slight headache, orthostatic intolerance is my new dysautonomia. Has anyone ever reflared in a totally different way?? And question is ~ I don't know how to treat this new monster. I knew how to deal with the old. I so far have added advil (helpful) sipping a little gatorade (helpful). I need a replacement b/c I don't like the sugar or citrus. I'm not sure about the midodrine - it keeps me from fainting, helps the pooling a lot, but if my pressure is 102/69ish...I'm not sure if that's low enough to take it. Called my cardio and he said dose as I would like and those numbers are low enough for a fainter.

Thoughs???

[E Soskis]

Hum....I have noticed that when I flare, it may be a different body system that is involved - I think it depends upon which nerve pathway is messing up. Some flares I have symptoms of a low-grade flu-like syndrome. Some flares I have head, neck, back pain. Other times, I have increased brain fog, visual disturbances, and trouble with balance. So, I'm thinking that the symptoms I experience are based upon whatever part of the nervous system is going whacky at the time. Dysautonomia in and of itself produces some common, every day symptoms but, a flare-up may cause them to worsen beyond the ordinary.....

As far a midodrine goes, I take it based upon how I feel - I never check my BP - I just know when I feel light-headed, weak, and extremely fatigued, my blood pressure is dropping or has dropped and I need midodrine. I wouldn't think a systolic BP of 102 is too "high" for midodrine - it just depends upon how you feel at that level. I know patients that have kidney failure and live with extremely high blood pressure - when their pressure is at what is considered a "normal" level, they are symptomatic and pre-syncopal just like we are when our BP is frightfully low......it's all in perspective and how you feel.......

[looneymom]

My son takes midodrine and I do monitor his blood pressure daily because our cardiologist wants his weekly readings. My son is 13 and the cardiologist wants to see his blood pressure at least at 110/70. My son cannot function without midodrine. Could your flare possible have to do with warmer weather? Have you spent more time outside? Just wondering if your electrolyte balance could have been up set by the heat or even a stomach virus?

[Relax86]

I really could stop checking my BP because it doesn't seem to correlate to how I'm feeling. Usually my hands will fill up and I'll feel ear pain, lightheadedness - these should be my clues to using midrodine. So thanks - E - for the reminder; and even my cardiologist said as much. As far as the warmer weather, I haven't spent any time outside. The day the flare occurred I was having a great day, week and month. Totally unexpected - calling myself 95% better. I'm just a little floored. There was no food, noise, light, smells, stress, lifting.....yada, yada. The only change I made was adding a little cardio (15 to 25 mins on the Treadmill)...and I had only used my Treadmill about 5 or 6 times and tolerated it great!! I guess I'm confused as to why I've had so many fainting episodes, pre-syncope and such strong lightheadedness in absence of bad vitals. My HR has been better than ever since Thursday night. And I just don't know how to do this dysautonomia...I thought I had figured out the other and had come to terms with it. And thank you for the comments

[Joann]

Sorry you are going through this. I remember when I posted asking if anyone had gotten better, you had said you were almost all better.

I hope it is just a temporary thing. Hope you can get a doctor to see you. Maybe it was the cardio, maybe too much too soon?

I am also in a bad time right now, its been almost two months and I am like you I can't figure out what to do. Mine actually seems like it is more than POTS related, but getting doctors to move is so frustrating. Went to CC last week and was told to give her two weeks to review all my old tests. Which means in two weeks she will tell me what we might do next, which will mean waiting while they set up those tests! In the meantime I am trying not to go further downhill, but this has a minds of it's own.

[looneymom]

When my son first went to MAYO, they told us to start with one minute of walking or riding a stationary bike per day. Back in October of last year, the longest he was able to ride a stationary bike was 15 minutes. When he pressed to go up to 16 minutes, his fatigue increased and other POTS symptoms became worse. My son would bike Monday and Tuesday, rest Wednesday, ride Thursday and Friday, rest Saturday and Sunday. I'm wondering if you over did it. Sometimes just the slightest changes will cause problems with OI/POTS. It's pretty frustrating to get to a level of functioning and then start going downhill again. I would encourage you to exercise at level that might be less than before but would allow you to build up slowly to the level you were before.

[Relax86]

I guess I'm questioning why I had to push to add the Treadmill when I was 95% better. When I was in elementary school gym class I had poor cardio function compared to the other kids. It followed me into adulthood so I traded cardio for weight training. After the 18months I've been thru it seems ridiculous to have such a severe set back from a few sessions on a treadmill. Thanks for all your thoughts/support

I had new blood work Thursday (in the heart of my symptoms) from the autoimmune Doc....all normal except Complement C3 was low (previously was even lower Jan 2013) - so something is going on in my system for my immunity to be in a little fight. All my anemia numbers squeaked into low end of normal even though I take 2 iron pills/day.

Something is destroying my much needed RBC's and preventing them from carrying oxygen to my important parts!! Just putting together the puzzle; and again, thanks for all of your thoughts.

[blueskies]

I get better or worse pots in periods of days or hours. I don't get 'flares' as such now although looking back, long before diagnosis, I can see when I did have pots flares and then very well times, not perfect health but good enough, in between. I think menopause pushed me into current state.

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