angelloz

Ramakentesh..can you explain that statement a bit more?? Is this the same response as getting a migraine after falling back asleep in the morning??

Hello, Sorry you are having such a difficult time. I haven't had this in awhile but I would have a similar problem..just as my body would finally relax I would experience a JOLT. I did not have chest pain at that time..just other times. It felt like my body couldn't take over the things it does automatically when you fall asleep...breathing etc..,so it would jolt me so I could consciously do so. I know that sounds odd but even during the day I felt like I had lost the ability to breathe automatically. Falling asleep is much better now, 6 years in. It seems the body has to almost relearn so many things. Hang in there and keep bugging the doctors!!!

I had nitro on my first TT as well. Passed out almost instantly and felt awful for a few days after. My next 2 tilt tables did not use nitro. One doctor told me that some people have a profound reaction to it so they don't use it. Different philosophies I suppose. The Mayo did not use it on me anyway.

Welcome and many hugs! We learn so much from each other!

I haven't had this but hope you figure it out. I remember in the past reading that non pigmented spots could be a sign of hypothyroid.

Even more perplexing is that sometimes it can make me feel better for a week span or so and I think ah ha!!! Then I will feel drained and weak after exercise and have to spend days recovering. Sigh....

Wow! Very interesting. I do not know of anyone else near to me that has pots but your reactions to medications mirror my own. I was diagnosed with mast cell disorder but like you antihistamines made me much worse, in fact causing a few trips to the ER. The Mayo diagnosed autonomic dysfunction and tested one auto-immune type but that was negative. I have low blood volume so drink all day long. That does help some. I also have SFN and reduced sweating. A mystery for you all to be sure! Many people think it all started for them with a virus so who know??? Good luck and welcome aboard!

One more thing to add...a couple of times during a bad episode I was breathing but had the sensation that it wasn't doing any good. It felt like my body was craving and needing air but the air I was breathing wasn't getting into my body correctly...a very awful feeling.

When you talk to the doctor try to talk about symptoms as specifically as possible, when you seem vague I think they sometimes brush it off. I know how weird and indescribable this illness can make one feel.

I would describe my breathing a bit differently. I feel like I can breath deep enough , especially if I concentrate , but it takes a lot of effort. It feel like I have to do all the work and it is not happening automatically with ease. At times I do get the feeling that I can only pull in a shallow breathe.

Timely topic as my sleep issues have been getting worse again. I also have severe migraines so I read that melatonin is good for migraine and sleep. Took a half of a 3mg tab last night. Wide awake worse than normal and feel jittery and generally terrible...crossing that off my list. As always everyone is different and it may help some. Just my experience. Hang in there!!!

Concentration can make me feel anxious, unwell, and sometimes a spacey feeling. Worse when I am not feeling well to begin with.

At the beginning I always felt nervous in the morning then horrible late afternoon. Now 6 years later, late afternoon is my best time. I have definitely seen patterns over the years. I go through days when I feel fluish one day better the next. I think what you describe is pretty common. Good luck!

Hoping things go slow and steady and you get home soon.

I have wanted to try Kefir but haven't due to severe migraines with many triggers...anyone out there with migraines try this???

At the beginning of my illness this was happening quite a bit. I had always been a 8 hour a night sleeper and I could go for 2-3 days it seemed and not even feel tired!! This is what helped me. I found that if before laying down, I just stopped moving around, it helped. My husband would rub my back and I would try to relax. I would still only fall asleep for an hour or two at the most. If I moved around I would be WIDE AWAKE again!! It took a long time but going on my 6th year of this illness, I can sleep for longer stretches most nights. Sometimes a small amount of caffeine makes me sleepy too!. I also would take a small amount of flexeril, a muscle relaxer. Things like melitonin made me feel terrible and still no sleep. Also, remind yourself that resting is good too! It takes away some of the stress of trying to fall asleep. . Listening to the radio or book on tape with earbuds helped . NO MUSIC!!!! I would sometimes realize I had missed chapters of the book without even knowing I had slept at all. I think this problem is common with many of us.

I don't think it is anxiety in my case as it comes with a specific physical occurrence...like after a trickle of water goes down the wrong way and I cough. When it closes I get very anxious :).

I do have an epi pen but this doesn't seem like a swelling of the throat. It happens instantly and seems to almost totally close off..relaxing my body is what helps. I have never used my epi pen to date. Seems like a muscle issue almost.

I understand this feeling! You want answers and the information that testing may bring...but when it makes you feel worse you think , "Why did I put my body through that?". I think it took me a couple of weeks after the tilt to start feeling the way I was.

Wow!! Thank you for your reply..I really thought I was the only one. Yes, exactly...when I take a sip and it goes the wrong way it happens after I cough. I too get the pressure or tight feeling in my throat. I will try the arm trick. Thank you again!

I have one issue i can not even get doctors to understand let along explain. Sometimes when I get that tickle in my throat, from whatever, after the first big cough my throat will close. The first time it happened I couldn't breathe back in. Very SCARY. I learned to relax my body and can slowly take in a breath again. If I can keep from coughing my throat relaxes more quickly. It is like my throat over reacts. Sometimes crying will cause it too but less suddenly. Any ideas??????

This was one of my early symptoms and I still get this. At times more often than others. I too get the night time spells, often after turning over, waking up , positional change. I don't get as blazing hot as in the beginning but it still happens. I too can get cool after a bit..maybe from the clamminess?? I think small dose aspirin helped me ( mast cell issue ) ?? But I have stopped due to easy bruising.

I have never tried it but that is really interesting. I have had some of that same type of cycle with supplements. Not as great of results as you experienced but similar. For example, I started to take vitamin D to help with headaches. Felt much better overall for several days then actually started to feel worse than before. I think for me small amounts of things, maybe even taken every other day, works better and I am not certain why.

I get the aching flu feeling without the temperature quite a bit, more so than weakness although that at times too. Hydration helps me the most. Don't have much advice but know that you are not alone.

I hope things are going well!! Wishing you all the best!