angelloz

Draven..I call mine the jelly legs too. It comes and goes for me.

I became sensitive when this illness began. I was not sensitive before that time. I don't understand why and it has not been explained to me. Not only sensitive but different responses. For example:  benedryl used to make me very sleepy..later it didn't at all. For migraine I could tolerate morphine..now it tanks my BP. I would not even notice taking a vitamin etc...now at times I feel so strange I would wish I had never taken it. I am very scared of medications now :(.

I run around 97...When I run 98.6 or so it feels as though I have a fever and usually have others things going on. Doctors never believe that Normal is probably a fever and infection or something for me.

Welcome,  we learn so much from each other. Hope Mestinon works well for you!

Hello,

Sorry to learn of your situation but many can relate. I have been to the Mayo in Rochester but not Vanderbilt. I had some good tests done at the Mayo and the doctors took their time and listened but I believe from what I have read that Vandy is better for autonomic problems. I have the weight issue too with losing with flares and barely maintaining when better. Also, have the medication sensitivity you speak of. It makes trial and error very scary.  I know others will chime in..you have found the right place!

Hello,

Glad you have at least gotten a diagnosis. I haven't had much luck with medications as well. 

More later but wanted to welcome you!

Thank you and right back at you!

My body pain is not gone but so much better when I lie down.  Shoulder, jaw and head stay about the same but the back pain and overall body pain decreases. I suspect I have a connective tissue problem but haven't addressed this yet. I have been diagnosed with MCAD but antihistamines make me feel worse. I am very sensitive to medications. At the Mayo Clinic it showed some SFN. Do you know if the pain from SFN is progressive? I am getting more pain as time goes on ..yet there is a day here or there when it is very slight. So many mysteries. I hope you are having a great day. Happy Holiday in advance :).

Amazing journey...thank you so much for sharing. In truth, I have been thinking about giving up on the quest but I will try once again. You are a very strong person. You are helping many have hope!

My head pressure was very orthostatic at the beginning....most noticeable when standing..better sitting, even less when lying down.  Doctors said it would hurt worse if it was a CFS leak, but recently I have read that may not be true. Also, that the orthostatic part can change over time..which mine has so I am rethinking the CFS thing. One doctor said that it was caused by my reduced blood volume which does make sense. It is so much easier to tolerate than my migraines that I sort of ignore it most of the time. I hope you get some answers and some help soon. All the testing can be stressful in and of itself.

Hello and welcome!

Could you call to wherever you are having the autonomic testing done and explain about the VT and the doctors recommendation? They should be able to advise you on your situation. As for the testing, with autonomic issues it can depend on the day or even moment for some. Head pressure was a big one for me at the beginning, along with a long list of other things. All the best!

Therussianmoose, I was not checked for that mutation. I will absolutely look into it.  Thank you for the tip!

I too have elevated tryptase levels but my bone marrow biopsy was negative. I have not been able to tolerate H1 and H2  blockers as nearly all medications make me feel worse. I even tried a compounding pharmacy to take out ingredients that might cause issues. Still wondering if I should recheck as it was several years ago. I wasn't sedated but didn't find it too bad actually. Good luck with everything!!

You can get through this!  I understand about wanting answers and care right away. Yep, always a week end or holiday..... I do know for myself, the worry makes symptoms worse, well maybe I am saying that incorrectly. I don't want it to sound like your symptoms are being caused by the worry in any way, just that worry makes it more difficult to cope with what is going on. I think lots of things can bring about a downturn. Waking up hot, plenty of urinating...all very familiar. Hang in there until you can consult with your doctor. But never feel badly about going to the ER. Sometimes just a round of IV fluids can help.

I would check in with your GP about the beta blocker. When I am doing worse they tend to drop my BP.

Sending positive thoughts your way!

I have had some relapses...it is terrible...you feel like you have come so far. I have so far always gotten better again and in a much shorter length of time. Mornings were always my worst ..and after backsliding it seems like mornings are the first thing to go south. Hang in there...make sure you are doing lots of fluids etc...sometimes when we feel better we forget those things.

I have had episodes of pretty severe blood pooling....deep red hands , but this is usually at its worst for a day or two then less severe. I feel pretty terrible all over when this happens. Has your doctor viewed this when it is bad? How do you feel otherwise?

Same delayed reaction here. Hot weather or very cold weather increases this reaction a great deal.

Heat can cause this in patients with autonomic dysfunction. I must be careful with how hot my bath water is. Always check with your doctor with new symptoms.

Bigskyfam...Wow, recently had the same thing happen. Went for my cardio visit. Took the lying, sitting standing...all looked good. He actually said, " I don't think you have autonomic dysfunction anymore.  Then the next day after being up for about half an hour went south fast. BP was 70's over 50's. Had to stay in bed most of the day drinking liquids feet up etc... WhenI discussed how sometimes at home when I feel scary bad my systolic  and diastolic are very close together, he said my BP monitor must be off. I explained how when my husband would test it, or my daughter their numbers were normal...talking to a wall  ;(.

When I was at my worst..totally wired, no sleep etc... I even felt uncomfortable sitting..wanted to be up and moving but that made things worse. I found if I forced myself to sit still get a back rub from a family member etc..it helps tamp it down. I still have this to a degree but has improved over time starting at about year four.

I loved reading your thoughts about the forum. Thank you for putting pen to paper and sharing!

So sorry that you are having such a difficult time figuring this all out. I also empathize when doctors say that isn't possible when you know it is happening to you! I have had the bad episodes like I am slipping away, also breathing issues with that but not the muscle tensing. Wish I had more to add...going to doctors when you have other responsibilities is so difficult but don't give up on finding some help for this.

I have not , but occasionally when I have a question about two medications I will call and ask the pharmacist.  Can usually get a faster answer but they may suggest you check with your doctor anyway.

I am a long time migraine sufferer and would recommend joining Migraine Again..migraineagain.com  There is plenty of information and support. Recently I received news of the yearly migraine summit and was able to watch the speakers online.

All the best. Mine are severe and I am always on the lookout for new treatments.