Relax86

If it was me - my guess would be unrelated.

I am the same. I can't even tolerate resting my hands across my abdomen. I am immediately nauseous by any abdominal pressure. I can't tolerate when the hairdresser puts the cape even close to tight around my neck. A tight sock or shoes tied too tight hurt immediately. I am very strange and also learning to be ok with my strange body

Would be thinking a short stay in-patient rehab would help so you could be safely monitored and gain strength. Good luck.

I'm 100% sure that I couldn't have gotten better without it. I also am under the impression that I used a management dose - for me meaning I only gave my body what it was unable to make/produce. I always took a little less than my gut was telling me I needed. I rested when I had to rest and tried to move when I could. I could have never added any cardio - what so ever as my BP's were too low therefore my HR was to high. But I started with seated weight training to pull me out. Low weights and low reps. Built the reps from there and made routine attempted progressions. I saved my walking and cardio for attempts at community tolerance - grocery store etc. Sometimes I would only make it to my husband's truck and for the ride nothing more. At any rate - I know if I pushed cardio at the time I was feeling most ill I just would have dropped over.

I was in decent physical condition when I got POTS. I also had classic - I mean right out of the textbook - adrenal fatigue symptoms. I could barely get out of bed to pee. If I could be sitting up at the kitchen table for about 30 minutes by 230pm when the kids came home from school I considered the day a success. By 5ish I did feel a little normal as was able to function for a bit. I would cry when it was time to go to bed b/c I knew I was waking up to start the nightmare again. I know in my heart of hearts I was unable to begin to function without hydrocortisone. It really helped my symptoms and my situation to be able to put life back together. Later I added a short period of midrodine which also did it's job. I can work, and exercise now. I still do not feel like me. I am making an attempt after my next menstrual cycle to wean down another dose of HC (currently taking 5mg 2x/day). When I tried to exercise too early (such as March/April) I paid dearly for those low level attempts. I do feel that slow steady attempt did contribute to my improvement but the intensity was very very low. I think my message is that each one of us has to find our center and solution to the best our bodies will allow us. I am so grateful and feel so lucky to be recovering. On the days that I get p*ssed that I'm still not me I try and remember all the folks who are truly bedridden and still searching for their answer.

Super congrats. I no longer consider myself orthostatic intolerant at this time as well. My BP is close to normal, and therefore HR most days stays close to normal. I still have occasional ear pain, face pain and R handed vessels will pop out along with some lightheadedness - mostly at night. But I believe with fingers crossed that I am coming out of an 8 month flare. Congrats to you lemons for the grace of improvement. And to all the other POTS/Dysauto folks that fight each day with baby or big steps for our successes. It's such a battle.

Always like to hear successes... thanks for posting

@ChristyD - if this was my child I would not quit seeing Doc's until I heard every possible answer to all these POTs questions. Good luck to you both. T

Welcome...This forum helped to make me well. Well in the sense of functioning but not quite feeling like me. Well in the sense of knowing I'm sick and not crazy, well in the sense that of knowing I'm just sick and not dying. I have yet to really find the medical direction that I need - mostly due to being in SJersey and having no autonomic specialists near me. I do have a family doc who diagnosed me with POTs. He's a great guy and it's nice to have someone to believe me, but he has limited treatment and testing experience. My biggest education came from the people here. My own personal opinion - which could totally be wrong - is that there are some folks here who have been eval'd, tested and treated by the best but still do not feel well, or function well. Symptoms still seem to do what they're going to do regardless of the highest level of medical care for some POTs people. And symptoms also seem to change from day to day for a lot of folks including me. I guess for me I'm not sure the best autonomic Dr will make me any better than just trying to educate myself. I learned a lot from how these people manage themselves and never use it in place of seeking sound medical advise. So far I've learned way more on this forum than I have from most of my specialists. Good luck to you and your medical path. This forum is a great start for feeling mentally safe and supported in an autonomic nightmare.

Hippy chic ~ I was bedridden for just a short period. And yes I faint but haven't since Feb. I have pre-sycope...but I can tell when it's happening and either drink or sit or both. It still shocks and scares me. The more I move the better the outcome, meaning it doesn't feel good when I'm pushing thru some symptoms but my outcome is that symptoms are reducing overall. Most of the light and noise sensitivity has diminished (not totally gone) and noticeable only on days I feel more flared. The smell is my biggest sensitivity. I believe it can get better....I have to believe. Good luck all.

I had ACTH test which my mean endo said was normal. My symptoms started out being very adrenal. I used hydrocortisone and couldn't have gotten better without it. I am trying a new endo soon....I believe there is a disconnect in my pit-adrenal system. My adrenals may make cortisone but nothing is telling them to - I'm sure. I also have breast milk letdowns and can express milk. I'm 44 and not pregnant - so this seems more than a little off to me. I currently take 5mg 2x/day and would love to increase the dose - as I feel much better on cortisone than off but both my cardio and family doc are begging me to wean. I just can't let go of the 1 drug that seems to get me thru my days. I can't breathe without it.

I think I'm the only nerd that doesn't know if she's pooling. My newest symptom is right hand much greater than left veins that pop out and are very blue. They itch and burn a little and make my hand feel numb. Happens mostly at night when I get in bed to relax. Not sure if that's pooling. Keep googling pic's of pooling and can't really find pic's that look like me. I do know that at times I feel like there's not enough blood in my brain and if you look at my right hand it seems to be there.

Sound and smell for me. Not touch. Smell is the worst. Could never tolerate Macy's perfume floor (yes the entire floor which meant pocket books and shoes), the dog food isle, or laundry detergent. I can smell anyone's gas dryer, my sense of smell is uncanny and annoying. Can't take my daughters' Abecrombie and Fitch lotion or most of their music - music only when I'm feeling flared. In the beginning I had a bad startle reflex that dissipated with both time and using cortisone.

I've been posting about my recent change from low BP to a more normal BP. Recently it's generally running 116/68. It drops here and there - so I don't believe it's stable there. I lightened up on my salt intake since the BP wasn't low and I'm generally feeling worse. I have more R ear pain, more R neck spasm {never knew if it was nerve (vagal??) or my carotid (I now think it's my carotid)} pain now into my upper R jaw, perception of facial weakness and R arm weakness. Also the vessels in my hand turn very blue and pop out - usually at night when I get into bed to rest. Who knows. I may think about giving fludro another try. I took it twice back in January and felt terrible. But my body might be more accepting now - unsure. I have 2 docs that just say to give things a try. It's hard to medicate yourself when you don't know exactly what you're doing and also usually respond poorly to meds. Any thoughts would be considered. Anyway McBlonde ~ I found myself hoping for my low BP's just because that's what I know. It's ridiculous I know but symptoms that keep us guessing are very frustrating. Makes it nearly impossible to find recovery. Good luck

I finally succumbed to try Midodrine after prolonged low BP's and dysauto/POTs symptoms since Jan. Water, salt, gatorade would barely help my daytime lows.... but never helped my sleeping lows. Would wake up 85/42 and feel terrible. Day one on Midodrine was fantastic - great for energy, much less lightheadedness, no brain fog (which isn't really a major symptom of mine). If anything it did make me a little hyper but I think I was just so happy and upbeat from having dragging BP for so long. I did have the tingly itchy side effect which lessoned within about 2 weeks. I took 5mg but quickly realized that 2.5mg at 8am and 2pm worked perfect. I never nap so that wouldn't be an issue for me. Also my supine BP is really low but I still wouldn't test it while on the drug. Life was pretty good until one day I took the afternoon dose after a lunch of chinese food and I felt my BP spike. Had my boss at work take it and it was 118/86ish (if I remember correctly). The rest of the weekend I ran 140/90 which is just crazy numbers for me. Since then my BP has been around 116/68ish. So that doesn't seem low enough to take midodrine anymore. Which is a shame because I like the way I felt on it. I finally succumbed to medicating a symptom and the symptom changed on me - like everything changes with the autonomic symptoms we all have. I always thought my POTs would greatly improve if I could get my BP up...it's pretty normal now and I still don't feel normal. Actually without the midodrine I have more tachy and more adrenaline surges. Usually worse at night. Anyway, I would recommend giving midodrine a try. For me the 2.5mg was more than enough. Good luck.

Congrats!!!! Really good news. I needed to hear it today.

My symptoms were always worse in the morning - would level out in the afternoon and nearly feel normal at night. Low dose hydrocortisone helped me level out my mornings. Symptoms have recently switched to waking up feeling decent, mid day better, night time tachy, R neck tightness, breathing diff, adrenaline rush post dinner and t/o the night including while I sleep. Current dosing of cortisone is 5mg around 8a and 5 at 8p. Not sure if I should play around with the times. My doc's give me no advise - just say do what seems to work. Recently went off midodrine as morning BP not so low. Have no new plan. May re-try fludro....who knows.

When I have a flare I often feel like my head is missing a ligament to my neck. If I go up the stairs (which I can barely do) I feel my head snap back onto my body - like it's floating. Who knows. I have no idea why I have the flaky symptoms I have. My neck has always had crepitus and I could always crack it at will. Sometimes alleviates a few symptoms, most times just improves headache.

When in the height of my flare light and noise were very difficult - would get tachy, internal tremors, light-headed, shooting head pain. Had to turn down the brightness on Iphone, computer, and mute TV. Couldn't even hear my daughter's music at all or their voices if arguing. Also smells were intense....had to ask entire house to stop using Bath and Body works, I couldn't tolerate my own shampoo smell, and the girls Abecrombie/Fitch just put me right in bed. Once flare decreased I began to tolerate noise and light in small doses...smells still a problem. Smells were always an issue before POTS but maybe a little symptom that was a precursor. I haven't lit a candle since December. I miss my old life.

Midodrine worked for me to increase my BP and boost my energy a bit. I had less tachy periods I think b/c my BP was stable. One day I took my usual dose right after lunch (chinese) and my BP went too high. From that day on my pressure has seemed to be close to normal however I am still left with some lingering dysautonomia symptoms. Overall better for taking the midodrine. Actually, I miss that might BP was consistently low - it was something that I could actually count on. How's that for weird.

Right ear pain has always been one of my symptoms. When it gets bad it follows a track down my neck. Then all of my other dysauto symptoms kick in. I have mentioned the ear pain to every specialist and even went to a great local ENT. All dismiss my ear pain. The ENT said my ear and hearing were find so not his problem.

Last Friday I had a crazy interaction with midodrine and chinese food. Had been tolerating the drug very well with very few side effects. It helped my BP but most of the other dysauto symptoms were still there. Right after a small lunch of chinese (which I usually get steamed but this time picked something with brown sauce on it). I took my afternoon dose and 15 minutes later felt my BP jump. I felt my blood rushing thru my vein, my BP was 118/89 and I'm usually 90/60. Later in the day it was 140/90 as my BP usually rises in the evening. I have not needed the midodrine since. My pressure has been running 110/60 in the morning and normal by afternoon and evening. I've had one of my better weeks after this episode. As usual with POTs/dysaut I have no clue what this means. Attempting to go with the flow.

Absolutely. I try and do my workouts usually Tues/Thurs mornings and by 4ish I feel like I'm descending in an airplane way too quickly. Popping in my head, lightheadedness, increased HR, diff breathing, R ear pain which runs down the front/side of my neck (always right).

I'm another one that feels normal with alcohol. Our symptoms are similar. But at some point (aka Jan 2012) the water, gatorade and alcohol stopped keeping me upright and I crashed. Currently on 5mg 2x/day cortisone. 2.5mg 2x/day midodrine. Midodrine was a big help to increase my BP and keep me alert but didn't really make my nervy feelings go away. Although yesterday I had chinese f/b my usual dose of midodrine in which I felt a terrible surge lasted several hours. BP was 118/86 which is very high for me. Went to bed with stabbing headache on left side of my head. Glad I woke up, headache less. BP was 122/78 today. So didn't take the midodrine. I'm a little off topic but I was intending to say we share some symptoms. The other part of my post is to confirm just how rapidly things change....and when you think you have one thing stabilized - POTS keeps you guessing. Good luck.

3 since 2004. this one has been the worst. hopefully with the next I'll be much better informed. i wasn't ready for this flare at all.