lgtaylor100

You've got me thinking about a brain MRI I had back in December. Everything was normal but it indicated some ischemic changes probably age related. Now I'm thinking what if they weren't age related and what if they have some bearing on my current condition? I'm not even sure who I would ask since the neurologists I have seen weren't very good.

1. Fatigue/ Exhaustion/ feels like I haven't slept at all even though I have 2. Tachycardia 3. Dry eyes; weird pulsing in eyes 4. Pain and heavy feeling in back of head and neck 5. Brain fog and feeling like things are never in focus Lynne

I don't know what it means either but it has been my experience that whenever a study comes back with something being mild doctors tend to ignore it and say it is normal.

After reading the post on viruses and other illnesses that may have caused POTS I thought it would be interesting to find out about others like me who developed POTS spontaneously. If so, what has been the course of your illness? What were your first symptoms ? Has your illness progressed or stayed the same. Mine developed a little over a year ago. Initially I thought it was a sleep disorder because I was tired all the time but was not sleeping well. Over the course of a few months the tachycardia started and eventually the neck and back pain, head pain, chest discomfort,etc. It has waxed and waned over the past year but I have not had an entire day when I felt well since September, 2010. Lynne

NowWhat - Beautifully said.

I agree. Even my own family; mother and daughter do not understand. They say things like "well it's not serious" or "it's not life threatening". Sometimes they expect me to participate in events when I really can't. The other day when I went to the swim club with my daughter and grandson she said maybe you could bring him here by yourself sometime. While I feel somewhat comfortable going with her because she's the one caring for the three year old and I can sit down if I need to or lie on chaise, I certainly don't feel comfortable taking care of him at the pool.Very frustrating. I try to explain but feel I am not succeeding.

Has anyone been an inpatient at Vanderbilt and participated in their research studies. From reading their website I understand that there is an inpatient stay of 11-14 days. If you have participated has it been helpful? It sounds as if they do not diagnose other symptoms that may not have to do with dysautonomia. Has anyone found a facility where they diagnose other symptoms as well. Perhaps Mayo?

Lately I've noticed that my exhaustion is getting worse. I don't know if it is because I am trying to do more things and it is backfiring. I describe my exhaustion as the feeling you get when you are on a flight all night, haven't slept and it is now the next night. This feeling usually comes on after any activity. Yesterday I ventured out to the swim club with my daughter and grandchild. I stayed in the pool for about a half hour which actually felt good because of the cold water and about an hour later had the kind of exhaustion that I just described. It is really starting to scare me. Up to recently I felt better most evenings but now I am just exhausted and usually fall asleep at about eight o'clock. I have also noticed that I am more tachy and that my morning resting hr is in the 90s. I don't know what my standing heart rate is because my machine gives me an error message when I stand. I am not sure if the fatigue that others describe on this forum is like what I experience. Any thoughts or suggestions. Lynne

Does anyone know if EDS can show up later in life. I am hypermobile. Doctors are surprised that i can touch my toes at age 62. A rheumatologist recently found great interest in looking at my knuckles although he didn''t say anything.My skin is mottled and often red and my eyes and mouth are very dry. Doctors are not sure if it is Sjogren's because most of the blood work is negatative except for a positive ANA. With everything that I've read and know about EDS most of the time it is diagnosed in childhood or adolescence or in a young adult. Still looking for reasons that are causing my dysautonomia. What do you think? I do feel horrible in the morning and do have neck issues (some cervical stenosis).

My husband helps with the daily chores and once a month I have help come in to do the heavy stuff. On my good days I do some laundry, load the dishwasher and cook a little. My husband does most of the cooking and all of the supermarket shopping since I get really dizzy in the supermarket. It's just the two of us now; the kids are grown so there is not that much to do. I like your idea Sue1234 of decluttering 10 minutes at a time.

Good for you Naomi. I recently went to a rheumatologist to explore auto immune causes of dysautonomia and he said that dysautonomia is sometimes idiopathic. I don't think that's true. I think there is always a cause so good for you for getting your doctor on board.

I have a better appetite in the evening? Does anyone else experience this? Late at night I am really hungry and I guess that is why I am gaining weight now. Up until 6 p.m. or so I have no appetite.

Me, too. It's a shame that there is really no specialty in diagnostics.

I had the same issue with appetite for six months and lost about twenty pounds. Then my weight was stable for about six months and now I am gaining. I guess it can go either way with dysautonomia.

My blood pressure is also normal and I do take midodrine. I take 2.5 mgs in the am and again around 2 p.m. It has not raised my blood pressure significantly (about 5 points systolic and diastolic). It does help me to stay upright a little better. It is not a significant difference but it helps somewhat.

I take midodrine (2.5) twice a day. I do notice that it increased my ability to stay upright. I get that feeling that I have to immediately lie down less often on the midodrine. I don't seem to have any side effects from it but do not take it later than 2 p.m. I take the small dosage because my blood pressure is normal to borderline high while sitting (130/80). I have not found that the midodrine increases my blood pressure.

Since developing dysautonomia about a year ago and being diagnosed in February I have been to many types of doctors. I have gone to two internists, a cardiologist, an electrophysiologist, two autonomic specialists, a gastro, a rheumy, a dermatologist, two infectious disease doctor and two neurologists. I noticed that many of you have gone to an endocrinologist. My TSH, T3 and T4 are all within normal range but I do have a 9mm nodule ( to small yet (according to my primary) to investigate. I have not had testing on the endocrine glands. What has been your experience with endocrinologists. Has one helped for dysautonomia?

Thanks Sallysbloom My problem is chronic so I guess that is why he prescribed the antibiotic. He said it would help my rosacea as well. I remember taking tetracycline to clear up acne when I was an adolescent.

Does anyone take Doxycycline. It has been prescribed by an opthamologist for me for blepharitis and dry eyes. I have been taking it for two days and it may have increased my fatigue but it is hard to tell because my symptoms are so variable from day to day.

Mine goes up and down also. When it is in the 60s and 70s though sometimes I feel as if it was still racing. Does anyone else experience this?

I get them too. I don't know what they mean.

Sometimes when I lie down for a long time I feel lightheaded as well. I've chalked it up to my own anxiety about lying there and not doing anything. I still tend to blame myself for my illness at times. I sometimes think that if I only tried to do more I'd be better. I know that is irrational and I am working on changing that belief.

Todd - Once it was determined that it was a mitochondrial disorder that caused your dysautonomia, what was the treatment plan and how are you doing now?

Thanks so much Sue. I wasn't depressed either before I became ill but the boredom is causing depression. Like you, I am also anxious, particularly now since the outcome seems so uncertain. I also don't attend events to please other people but sometimes really want to go for myself and many times find that I can't. That is what I am having difficulty accepting.

I really don't have many food intolerances( that I know about) except for pineapple and onions. I have tested negative for celiac but am considering a gluten free diet anyway because I heard that generally many people just feel better that way. Is there anyone else out there with out known sensitivities who feels better on a gluten free diet?