angelloz

Hello, So sorry you are dealing with the horrible headaches. Even with autonomic dysfunction, which at times is quite scary, my migraines are my worst quality of life issue. My migraines also started in my early 30's and progressed to nearly constant neck and shoulder pain which sometimes becomes severe, ER , migraines. Like you I wonder, chicken or the egg. I can really relate to your questions. I am considering seeing an orthopedic doctor to rule out or in a shoulder issue. X-rays show no issues. I am going to bring up a standing MRI with my new neuro in January. I will let you know if I figure anything out. Please update us if you can shed light on this issue. All the best!

Keep reading information about POTS and autonomic dysfunction. Many actually do better without medication. I became very sensitive to any medication. Moderate exercise helps some depending on your current level of activity. If you suspect any type of mast cell involvement you could try some OTC antihistamines, providing you have taken them before. Google Dr. Afrin and MCAD to check into that.

I too do better with standing and walking at home...probably knowing I can lie down suddenly if I need to. Staying hydrated and eating salty foods helps me but I have low blood volume. Have you done the poor man's tilt table test.??? Take your pulse rate lying down for at least 10 minutes. Then 1 minute after standing, then 5 minutes after standing. I wish you all the best. I'm sure others will have some thoughts to add. Ask any additional questions that you may have.

Check with your doctor or pharmacist, many of us are sensitive to medications.

Due to migraines I barely eat any variety at all. Rice, potatoes, cooked vegetables, oatmeal with cooked blueberries. A bit of cottage cheese and chicken, that's it.

Had my endoscopy this morning. They took three biopsies and I wont' hear back for a few days. It mentions gastritis on the report. Mine came on rather quickly. Although I may have had a few very mild instances in the past. Does anyone out there have experience with this condition? Right now it is painful and I am rather miserable. Eating is not going well.

My list of symptoms is long as well. You are the first person that mentioned, "feel like you're walking on a slant." This was an odd and early symptom for me. It did resolve in time with no specific treatment. I still deal with plenty but that seemed to fade away. Let us know what you learn from your visit. It is always so interesting to learn and compare. Good Luck!

That all sounds FANTASTIC!!!!!!!! All the best on your upcoming surgery!

Greetings. Strangely what you describe happened to me at the beginning of mt autonomic issues. It went on for months with little sleep and no good nights between. Also, I did not feel especially tired during the day which was really odd. I too have low BP. Like you, the usual Benadryl did nothing. My situation has improved over time. The only thing that helped me a bit was relaxing way before bed time. Not much moving around or activity. I occasionally will still wake to that, scared for no reason feeling. Hope it settles down quickly for you.

What is this testing? I have not heard of it?

Me too! Thin blood as well even though I don't take blood thinners or use nsaids. I am checking with hematology to find out why.

I am very sensitive to smells as well....not as bad scent wise as a filling.

I have done this with other medications accidentally, I have actually called poison control and explained. They have great information on what is too much and might be harmful, what will probably be fine, half life of drugs , what to watch for etc... It put my mine at ease.

Mine has varied between 9 and 17...still exploring this as well.

I have vision issues as well. I have had them for many years and so far not really worse. My pupils are really tiny and don't respond the way they used to. My husband says sometimes they are different sizes but not when I have looked at them. Things often seem very bright to me. Sometimes I seem to have to sort of force my eyes open when outside. I also have gotten what I call dim vision at times. Blurry on a few occasions due to dry eye issues. I do believe things will get better for you with time. Some of it is you adjusting, but I think also over time the body learns to sort of compensate for some of the autonomic changes. I think everyone here understands the fear, but have hope. Not only can time improve things but studies to help and breakthroughs can happen any time.

I think you would be correct in contacting the best of the best such as CC , Mayo, John Hopkins etc and find one that will take your case and prepare for all phases. Hope one of those will contact you with a solid plan. All the best!

Wow organic gatorade!!! Where ?? How???:)

So sorry to hear this. Did the doctor have any idea why you didn't get any sort of sensation to warn you? At least your EKG was good etc...

Hydration is important and helps me when I fly. Also, I think snacks. It helps if it is not an early morning flight for me. It gives me a chance to hydrate and prepare my body. I think that length of a flight will be fine.

I had this very mildly at the beginning of my autonomic disorder. Everything seemed slightly off. Certain stores and locations were worse than others. I was not quite fully there. Overtime it has reseeded.

I have had this at times...have woken up to blurry vision too. The vision issue was due to dry eye. I have drops that help. The hearing I believe is due to blood volume, fluid issues or blood flow as you stated. I have trouble sleeping elevated as well...keep sliding down.

I think I need more clotting not less :).

So for the past 6 months or so, whenever I have blood drawn I am asked if I am on blood thinners. The answer is no. I had to have a tooth extracted and ended up horribly black and blue with severe swelling. Took awhile to stop bleeding. The oral surgeon suggested I see a hematologist but they won't see me without some type of diagnosis or referral. My GP checked clotting factor which was in normal range on the low side. I do take ginger for migraines and also use a lot of olive oil due to migraine triggers. Could this alone cause such an issue. Can't stand having more or worse migraines than I currently have. Took a half ibuprofen yesterday and had stomach pain and nausea so won't try that again. Any thoughts team :). Thanks in advance.

My issues began in 2010. I had a tetanus vaccine, was going through menopause, ended up having a gall bladder removal which I think was unnecessary and made things worse. Perhaps a combination of all these things???? I had a weight loss of 30 lbs ...and I was just a normal weight before. I think this may be part of my sensitivities to medications. I also always have elevated tryptase levels but things I have tried for mast cell issues don't seem to help. I wish I had some answers for you. I keep searching.

You are not alone...yesterday in fact I was outside in the yard, feeling pretty good, then suddenly nausea, stomach pain, low BP and pulse pressure thinking what do I do? By afternoon I was better but still crummy. Today average but some numb spots on my legs and tingling. Sigh.... minute by minute. Hope you go back to a more consistent pattern.