Susanhs

Congrats Katybug!! How long did it take you for the whole process. I was just given my initial denial. The attorney has appealed, so now it's wait and see for a hearing date. Congrats again. It's nice to hear some good news!

Hi auntwinnie. I was where you are now for three years and finally I had a TTT and they diagnosed POTS with orthostatic hypotension. My doctor says I have a form of severe Dysautonomia. The TTT should confirm the POTS but make sure you tell the doctor all of your symptoms. I still haven't figured out the cause, although we've ruled out a lot. Hope you are able to find your cause and that it is treatable. Everybody on this website is wonderful and informative. Please keep us updated on your condition. Gentle hugs,

Sorry everybody for not responding sooner. I have been suffering with headaches, dizziness and all the other good stuff the past couple of days. Angela, I have never heard about the connection between high vitamin B levels and cancer. Was the doctor able to tell you about why all your levels were so high? I have not had my B6 or B12 checked for awhile. I should mention this to the doctor just to see if my stopping the multivitamin actually returned my B 6 back to normal. Agreeky, I think your doctor has to specifically order the tests. My neuro suspected low B6 levels so when it was high he didn't know what to say except stop the vitamins immediately. My GI did several biopsies and more extensive blood tests for celiac, eosophilia, H Pylori and cancers. Everything was normal, of course. One day, maybe we'll figure this all out. Thanks for all the feedback. I really appreciate your taking your time to try to help me. Now, if I can just get my neuro's nurse to call me back

Agreeky, I have true floaters but I have visual disturbances with my migraines sometimes, like flashing lights and bright halos. I have started with depth perception issues too. The tunnel vision usually does occur at night but it's when my blood pressure dips. I don't drive at night or that much during the day anymore because of the dizziness, fatigue and my peripheral vision is so bad. Maybe another eye doc will be more helpful to you. My eye problems have gotten gradually worse over the last couple of years.

I totally can relate to the tunnel vision. Just had my eye exam and my vision is 20/20, although extremely blurry. Did the eye doctor do a field vision test on you? I assume doc checked your optic nerve and blood vessels in your eyes. My optic nerve and vessels are fine, but my field vision test was poor. I also have many floaters in my eyes but the doctors always blow it off like it's nothing. Hope you have better luck with this new doctor. Can't wait to hear what he has to say. Take care of yourself and gentle hugs,

Chaos & Agreeky, sorry about not posting sooner; I just noticed there was a second page, duh! Chaos- I too have felt for awhile it's neurolgical. My neuro sent some blood work to Mayo. They were able to rule out stiff person syndrome, Lambert Eaton, Myasthenia Gravis and autoimmune neuropathy, as well as some paraneoplastic syndromes. I do have a lot of those same symptoms though. Glad she was able to get a diagnosis finally. Agreeky, I have also seen a connection between women with MSA and PTSD. Please let me know how your appointment goes with your neuro. My primary care doctor feels there is a definite link between my dysautonomia and the PTSD. Good luck in June. Hope you can find some answers and relief. It's not right being that young and being sick. Gentle hugs to you both.

Chaos, I did some research on the kindling theory and whiplash syndrome and it was extremely mind opening. I do believe that I have delayed onset PTSD (from childhood abuse-was abused by uncle for many years and was around him for another 10 years before I finally told anyone). I dealt with the abuse by disassociation and academic/school activities. Then, with the additional traumas, they kind of piled onto it. My doctor has been thorough in checking for "obvious" things. So, he has ruled out ME/CFS, Hep C. I don't recall any virus before the symptoms started. I never used to get sick, that's the irony of it all. Since the onset, I have had so many colds, flus, infections, allergic reactions(minor). Anna - seeing a geneticist is a good idea. I may talk to my neuro about this whenever I hear from him (left him a message last week). I really want him to send me to a Movement Disorder Specialist, who may know a little about Atypical presentations of Parkinson's, dementia, MS or MSA. Unfortunately, I have been thoroughly checked out for Lyme and all tests were normal. At least if it were Lyme, I could try the treatment protocol and hopefully have gotten some relief. There was another couple of incidents that I forget about but the vertigo still began before either one occurred. One time I hit my head hard on a steel beam in our garage. I would say I didn't pass out, but I was "stunned". The other was a stupid drinking episode in New Orleans with my husband. We were going to have a drink or two then go to bed (we are not partiers). However, the people next to us were doing vodka shots and invited us to join them. I don't know how many I ended up having. I never do shots of any kind. I don't know how we made it to the hotel, but I remember waking up with my husband dousing me with water and there was this bright light behind him. The next morning I was still vomiting and when I went to the bathroom there was blood on the walls from where I had thrown up so much I was bleeding. I couldn't even look in the mirror my eyes were crossed. I couldn't eat anything and stayed in bed all weekend sick. My husband says now he should have called 911. He had never seen me like this. I get so embarrassed when I tell this story. It was really stupid. So, I'm sure I had alcohol poisoning. I also went to the eye doctor for my yearly check up. The blurriness has gotten worse and last year I had a slightly abnormal field vision test. This year, he said that my test was poor. He says there must be a neurological cause to this. He mentioned my reaction time to seeing the spots in the periphery and even the center spot was very slow, so that is why he suspects that it is neurological. I definitely react to things slowly, run into walls, drop things and now I'm leaning when I walk. Sorry to add to the mix. It's hard for me to remember things. By the way, Social Security Disability denied me so now my attorney is appealing. The attorney thinks it's because my level of education is so high that I could find something to do ( I have MSW and JD, practiced law for about 7 years before I couldn't do it anymore). I guess they don't care about the liability I would be in giving anyone legal advice!! Thanks everyone again for all of the support. It helps to know that I am not alone in this. Take care and gentle hugs to everyone!

Aimes, Yes, I have been checked for vitamins, including B12, B6,potassium, etc. The only thing off was my B6 was high. None of the doctors could explain why this was happening. After thoroughly researching the internet, I found that you can only get high B6 if you take a lot of B6 for a long period of time. I was only taking a multivitamin with a small amount of B6, so there was really no good explanation for it. The only thing I can figure out, and it's just a guess, is that something was happening during my digestive process and it was not breaking down the B6. Oh the wonderful mysteries of Dysautonomia!! Thanks for the suggestion and I will keep it in mind when I do more bloodwork I may go ahead and ask for another thorough testing of all of these levels. I'll keep you updated! Take care and gentle hugs!

Joann and Alex, Thanks so much for your kind words. I don't always have a great attitude. There are days when I just want to crawl in a hole. But I realize it could be a lot worse. Hopefully we can all find the answers we need to find relief one day. Thanks for the support. It means a lot. Take care of yourselves.

Chaos, thanks so much for the suggestion of post whiplash. I have read a little into this. My neuro seems to think that both of my incidents were not significant enough to cause these symptoms of Dysautonomia. In the car accident, I did not have any impact, it was severe emotional trauma as I almost got in between another car hitting the back of a pickup truck. I felt extremely guilty because I had slid on black ice and went off the road into a ditch. The pickup truck stopped to help me and as I was walking up to them another car came speeding off the black ice and hit them. That person was killed. This occurred in 1998. My symptoms started in 2006 or so with the vertigo and REM Sleep Behavior disorder. Then the explosion was in 2010. My other symptoms have gradually onset over the last 3 years. I will look up "kindling theory" and see if I can make any sense of it with what all has happened to me. I definitely don't think all the stress has been helpful, that's for sure!! Thanks again and take care of yourself.

Yes, unfortunately you need thorough documentation in order to have a case. Do you have insurance under your parents? It seems that maybe you should get a good primary care doctor who can refer you to the right doctors. It may take some time to build a case, but maybe the docs can determine the cause of your illness and treat you for it. Who knows? Maybe it is something that is curable. You're so young, just don't give up on yourself. Take care.

Hire an attorney to appeal that specializes in SSI/SSDI and there will be no upfront costs or fees. If an attorney wants anything up front, find someone else. The attorneys who work in disability get paid when they win your case.

Psalm 23, I totally can relate to what you were saying about being jealous watching others it. My hubby can eat anything and he feels bad about it. Sometimes when we go to a restaurant, I get emotional realizing I can't eat normal food. I have had to leave the table to go to the restroom to cry my eyeballs out. And then the waiters make you feel bad when you just order mashed potatoes and water. I actually had a waiter offer to buy me a salad to go with my potato soup once. He was really worried that my husband didn't want me to eat. When he saw I only had a few bites of my soup, he just got quiet.

Kris4444, I'm so glad that your scan at least showed the GP. Mine did not, but I know when I stick to the diet I do much better, which means no vomiting. I still have bloating and nausea after only a few sips of Glucerna and water. When I first started getting sick, I put on about 7 or 8 lbs, then I rapidly lost 20 lbs. My constipation has been severe, having to use enemas. My GI put me on Linzess in December, it started working about 2 weeks into taking it, but then I started having (sorry for TMI) severe diarrhea and incontinence. Tried every other day and every third day, but same issues after a couple of weeks. If you have problems with the Linzess, ask your doctor about Amitza. So far, I have only been taking 8 mcg, lowest dose, but it has helped some. I'm afraid to increase it, but I noticed constipation is getting worse again so I may try bumping it up to 16. Hope you find some relief.

I have nausea with vomiting throughout the day everyday. It is very difficult to stay hydrated because of early satiety, too. I mix my Glucerna with a little water as I drink it (this is my main source of nutrition for past several months). Just try to do the best you can. Some people have suggested Gatorade or PowerAde. You may want to try sipping on that throughout the day. Hope you feel better.