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.

Sorry for your suffering Joann. I too am searching for answers. I agree with Hope that maybe the metoprolol isn't right for you if it's making you feel that ill after you take it. How much is the dosage? Does it lower your blood pressure any? I took a calcium channel blocker once, verapamil and it made me feel awful. I asked the doctor to take me off of it. Make sure you inform your doctor and maybe he or she can put you on something else that will work for you. A lot of us have sensitivity to different medications, so don't give up yet. Gentle hugs,

Thanks for your feedback, jangle. I know when they did the last MRI in Sept 2011, they were looking specifically for MS lesions. Not sure of the radiologist or my neuro's familiarity with MSA or the hot cross bun sign. I had a close friend that had an episode at home, her doc did an MRI, said it was normal. She decided to change doctors, new doctor looked at MRI and found that she had a mild stroke. My dysautonomia doctor has mentioned Vanderbilt as a possibility. It may be time to actually make the call. We all suffer in different ways. I try to just take it one minute at a time, because I never know what's lurking around the corner. All we can do is live our lives and try to enjoy as much time as possible.

Hi everyone. I recently joined and have been lurking for several months. I have tried to contribute whenever I can to help others, but I still am not sure where I fit in. My husband, who is the most wonderful and supportive man I have ever known, suggested I write in to see if anyone could help us decide where to go next. I have been sick for several years now, gradually progressing to my current state of disability. The first symptoms were vertigo and acting out my dreams, which began about 2007. I would cry and scream out in the middle of the night and my hubby would have to wake me up from these violently vivid dreams. I was on no medications when this started and have never taken any illegal drugs and never been a heavy drinker. Slowly, I started to get fatigued, where I would have trouble walking to get the mail. I also began feeling lightheaded when I would stand up. Then, I started having constipation, with bleeding and intermittent bouts of diarrhea(sorry for the TMI). I was diagnosed with fissures, gastritis and IBS. FYI, I have a history of PTSD, including childhood abuse which went on for years, witnessing several deaths(as a police officer and one car accident) and then in April 2010, I was in a minor boat explosion on a friend's boat. I received the "blow" of the explosion. Immediately, I started having migraine headaches. The migraines worsened in June so I went to the doctor who tried numerous meds, none of which stopped the headaches. I had MRI/CT scan which came out mostly normal. I went to a new doctor who diagnosed me with Fibromyalgia and put me on Cymbalta. The headaches got worse and I started tingling, losing my balance when I was trying to exercise, light walking and aquatic therapy. I could barely get out of the pool at times. My neuro, in February 2011, noticed the loss of balance, tremors and leaning when he evaluated me. The pain in my shoulders and neck was often intolerable and I had a couple of episodes of bowel incontinence(TMI again). I started to worry about MS and neuro did MRI of my head, neck and lower spine, which came back normal. In February of 2012, the dizziness, vertigo and high blood pressure started. I was extremely exhausted all the time and the REM Sleep Disorder Behavior was happening more frequently. At night I was close to passing out and when I would take my bp it was 60/40 at times. My doctor suspected POTS and dysautonomia and referred me to a cardiologist. He did EKG (normal), Echo (confirmed mild MVP), 24 hr halter(confirmed low bp at night, high bp during day)and chem stress test(normal). He was concerned about hypertension, it was 180/110, but he was afraid to treat it because of the nocturnal drops. This continued for several months. He finally tried on Midodrine at night, and after several changes to the dose and times taken, it never raised bp so it was discontinued. In March, April of 2012, my digestive issues started. I began to get full easily and was severely bloated and nauseous. If I ate too much, I would vomit. My hubby and I went on a gluten free, juicing, whole foods diet and I got sicker. I couldn't hold anything down and lost 15 lbs from July to August. I went back to gastroenterologist who has done several tests: barium swallow X ray (reflux), gastric emptying (normal), endoscopy/sigmoidoscopy (dilation of esophagus, fissures, internal hemorrhoids). During this time, I still cannot eat anything, I choke on my own breath and liquids, whatever I do eat and my pills feel stuck in my throat and my diet consists of Glucerna shakes, toasts, applesauce and a few other small amounts of food, which make me extremely nauseous and vomit. Over the last several months, I have noticed that my drops in orthostatic blood pressure have been more frequent and severe. My systolic blood pressure will drop 25-30+ mmHg upon standing within three minutes and it usually stays low for 15 minutes or so. My diastolic will sometimes from 10-15 points. My heartrate always is 30+ upon standing. I am being seen at a dysautonomia clinic here in Birmingham and my doctor is wonderful. We are treating the POTS with beta blocker(metapropol) and since it was further dropping my lying bp, she added 0.1 mg of Florinef. All of this has so far helped my hypertension, and has lowered my heartrate to 55-60 when lying down, but I still have the POTS and othostatic hypotension and all the symptoms. In addition, my balance has gotten worse and I have fallen several times. I also have started to drop things as soon as I pick them up. I'm very clumsy, my blurry vision has worsened and my body temperature flunctuates wildly (94-99.5). My hands and feet are freezing cold. I have severe lower back pain, coat hanger pain and stiffness. Sometimes my posture is stooped and I shuffle when I walk. I am terribly sorry for the length of all of this, but I could go on and on I have so many problems. Several things have been ruled out: celiac, Lyme disease, Addison's and other endocrine issues, pheochromocytoma, cardiac issues, paraneoplastic, Myasthenia Gravis, several autoimmune causes. I guess my worry is that I have some sort of autonomic failure. No one in my family has dysautonomia that I know of, but I do have family history of Parkinson's and dementia. I am only 42 years of age and the doctors are having a hard time believing it is Parkinson's, MSA, PAF or Lewy Body Dementia, although I feel it is a scary possiblity. If there is anyone that can help guide me in the right direction, I would truly appreciate any assistance. Thanks again so much for taking your time to read my story.

I also have this happen. My temperature on my really bad days can go as low as 94 degrees and up to 99.0 degrees. It flunctuates pretty wildly on these days. When it is really low, I swear I feel like I am dying and look a greyish color. I have frequent fevers too and then end up with fever blisters on my mouth, above my mouth and outside of my noser. My normal temperature is lower than most at 97.3. I told my neurologist about these flunctuations and he didn't know really what to say about it. Just part of the mystery of dysautonomia I guess.

I have been having cold extremities for a couple of years now. Always had cold hands at times, but my husband would touch my leg in the middle of the night under tons of covers and it would be frozen. I'm not sure what kinds of dysautonomia I have, but I have severe OH, POTS, with many other problems.

Friedbrain (I love that name, I should have been more creative, but my brain is too fried to do it - Lol), I did have a barium swallow xray but the doctor did not focus on my esophagus only my stomach due to my vomiting. And they did not give me varying solutions with different levels of thickness. I had a hard time swallowing the solution, but the doctor just told me to "swallow faster," whatever that meant. I could only swallow how I was doing it. Maybe he should have recognized there was a problem, huh? I am also sure that I have neurological problems as well. I started down this path several years ago with horrible bouts of vertigo and then came the REM Sleep Behavior Disorder issues. I started acting out my dreams, talking, crying, and jerking all over the place. This has gotten progressively worse over the years and all of the research points to Parkinson's, Multiple System Atrophy and Lewy Body Dementia. I have mentioned this to all of my doctors and they seem to not know what to say. My doctor for my Dysautonomia did acknowledge that if I keep progressing despite the medications she has me on, she will start to get concerned. So far, the medications haven't helped. Toprol XL lowered my bp too fast and now I can't get a standing bp most of the time. Klonopin which is supposed to treat the REM Sleep Disorder hasn't stopped it. I just think it's more than a coincidence that I have had all of these issues, plus dysautonomia with OH, what seems to be gastroparesis (am full after one Glucerna shake now), and now issues with swallowing, choking, and falling down. Sorry to be so longwinded, just wanted to see if these were some of the issues that you are experiencing, too. I've been trying not to panic over this, but it's hard when you just feel like you are on a downward spiral. Thanks for listening (or reading). Take care,

I would definitely want to ask him about why you would have the lymphoid follicles, but test negative for h pylori. That seems strange to me. The stretching did not help with the dysphasia unfortunately. I still choke on nothing, just breathing I choke sometimes. Maybe one day we will get some answers that will help us all.

Hi Libby, I also had one normal gastric emptying test. In fact, our experience sounds the same, except for the hair. Sorry about that. Since then my doctor has went on to do an upper endoscopy and sigmoidoscopy, all of which were negative for cancer, eosophillia and H. Pylori. He even stretched my esophagus because I was having choking and swallowing issues. I think he has me diagnosed with IBS-C, reflux and dysaphagia NOS. I just had another appoinment with him last week and he changed a medication. He had me on Linzess which is for chronic constipation. It caused (pardon my TMI) severe diarrhea and incontinence, which was horrible. He seems to think that if he can get that part of my system working, it will help with the nausea, vomiting and bloating. My Dysautonomia doctor thinks that I do have gastroparesis but sometimes the test comes out normal. I truly believe I have gastroparesis also, because I have only been able to maintain a diet of Glucerna shakes, pudding, toast, and very little baby food, since this started last summer. If I try to eat outside of these, then I end up severely nauseous and vomiting. I've lost 20 lbs and can't afford to lose anymore. The symptoms have progressively gotten worse even though I have been sticking to my Glucerna diet. Maybe someone else on the forum can give us some guidance as to what we can do. It's really frustrating to know that something is not right and to keep coming up "normal." Take care.

Sending positive energy your way for good results!!

Thanks so much badhbt and AllAboutPeace. It's so nice to have found this group and site. And to know that I'm not alone.