bellgirl

I actually saw a show on POTS on "Mystery Diagnosis" after being diagnosed, that is;...it was good. There are some books about it, and I know someone is trying to have a movie made, too. I do post things on occasion on my FB page. My ENT did a thesis on Autonomic Vertigo, and he is the one who sent me to the Autonomic Disorder Doctor and a Neurologist. I'm wondering if somehow we could get the doctor's to have a symposium about it for the medical community, as well. That would be very helpful.

Increased fluids and circulation helps all our symptoms. Wish my bladder could tolerate more...I have bladder spasms, if I drink too much. Maybe that is why I felt so good when I was pregnant years ago?! Hadn't thought of that before. Thanks for all the brainstorming. I love this site

I have had a metallic taste in my mouth before, and trouble swallowing, numbness at times, but more nerve pain, tingling and heaviness than numbness. I believe all of these things can be related to dysautonomia (POTS). You definitely need a good neurologist, who knows something about dysautonomia. I'm not a doctor, but I thought anything over 30 bpm on a tilt table diagnosed you with POTS. You also need a doctor who specializes in Autonomic Disorders.

I take Magnesium, B Complex, frequently, and Flax seed oil every day. I was put on Flax seed for my dry eyes, years ago, and found it helped with blood flow (I bleed easily), which is good since strokes tend to run in my family. Increased blood flow helps with a lot of things, including circulation to the brain; I also know the flax cushions your joints, is good for digestion, and softens your skin and hair, so there are many benefits. I talked with my neurologist about the magnesium lowering your blood pressure, and he said it wasn't enough to cause concern, but maybe those who have low blood pressure problems or OI should be aware of this, too. I am amazed at all the things I had been doing even before being diagnosed, but that was definitely my nursing knowledge, listening to my body, and answered prayers, when I was sick without an accurate diagnosis for so many years!

I have tinnitus, ear ringing, all the time. It is annoying. I have had the pulsatile type only a few times. Since I have been on medications for my tachycardia, and blood pressure, it has helped with the head pressure, neck pain and pulsatile tinnitus.

I know that hyperflexia can be a part of dyautonomia. My reflexes have always been hyper, and now more so on the left side, including tremulousness. I finally have a neurologist that listens to me. I had an MRI and MRA done. My dad had a cerebral aneurysm, so since I had stroke like symptoms after a virus 13 years ago with a binocular defect in my left eye, I have had many MRI's with contrast to check for these things. Initially, I thought I had MS, because of all the weird neurological symptoms, tingling, heaviness, tightness, shock nerve pain, warmth in different areas, but after the last MRI with no lesions, they ruled that out, but I find it interesting that my eye is still misaligned enough to affect my vision, I've had ear surgery because of a malfunctioning eustachian tube, vertigo and dizziness, and excessive tearing, droopy eye lids, etc., yet no particular reason for any of these things, except my new diagnosis of dysautonomia. I was also tested for Meniere's at the ENT and hearing loss, and there was nothing significant, so I am grateful for that. If I were you, I would find a doctor, who you can trust to share anything. I had to do a lot of searching before I finally found doctors who would listen to me, admit they don't know everything, and are interested in me, my illness, and are even willing to learn a few things, too...hang in there.

I have Mitral Valve Prolapse, too, and all the symptoms you are describing. I sometimes have palpatations, and of course, tachycardia. It used to wake me up in the middle of the night with chest pains, sweating, weakness, and shortness of breath. I am on clonazepam at night, and it is helping. I am also on a beta blocker, a long acting one, Bystolic, which has helped with the tachycardia. I have sleep apnea (on Cpap machine at night to help me breathe), and asthma on occasion, too, and yes, it is scary, but the good thing is that we don't have any more chance of having a heart attack than the average person, so knowing this is a relief, and I also just take slow steady breaths, pray, and rest a lot.

I agree with Issie...it could be sleep apnea. I have it, too, and it is more common than one would think with patients with dysautonomia. My autonomic disorder's doctor told me that 30% of us have it. I also have a Cpap machine, and it helps so much with this problem. Getting a good nights sleep improves your quality of life. Getting a sleep study is important, if you have these symptoms, so you will get better sleep, and feel better during the day, too.

I was diagnosed with high blood pressure about 11 years before my dysautonomia diagnosis, and was on several meds for that. I also have a mitral valve prolapse. Actually, there are quite a few people that have mitral valve prolapses, and don't have our symptoms, but if they say it is at 65%, that means your blood is backwashing from your ventricle to your atria 35%. Backwashing is a normal occurence for us, and we have no more chance of having a heart attack than the average person, believe it or not, according to the literature, but of course it is what causes our blood pressure and heart rates to be all over the map!! Sounds like you have a wonderful doctor, and once they get you on the proper medications, you will be amazed the difference it makes. Don't worry about crying even in front of the doctor. After being home bound, it is a relief to finally be getting answers!! I know all about it. My neurologist saw me cry; it can be overwhelming at times. I was diagnosed with 3 things in 3 weeks! I am much better, but still have some bad days...you'll get through this...I promise; and we'll be here to support you, too!!

Definitely have to keep our sense of humor...thanks

I've been told that 30% of those with dysautonomia have sleep apnea, so when I was diagnosed, my doctor sent me to get a sleep study, and sure enough, I had it. I had many episodes, where I would wake up gasping. My husband had to poke me on several occasions, so I would start breathing again, when I was sleeping on my back, especially. I slept like this for too many years and was exhausted. I had two nights of sleep studies, and on the first night, I had 91 arousals during my test, 64 hypopneas and 15 apneas. My O2 concentrations where pretty good, actually, and most people with this disorder have Obstructive Apnea instead of Central Sleep Apnea, except those with Multiple Systems Atrophy, which is progressive. I now sleep with a Cpap (Continuous Positive Airway Pressure) machine, and I am finally getting the sleep I need. My heart palpatations would constantly wake me up in the middle of the night, because of my Mitral Valve Prolapse. I would become tachycardic in a supine position, too. Now I'm on a beta blocker, and that doesn't happen as often as it used to, and I am finally getting my much needed sleep. I am on clonazepam, as well. That also relaxes me to rest easy:o)

I've had nausea, and bowel cramping in the last few years, before being diagnosed. It seemed to get worse when I had major vertigo and dizziness. I finally went to a GI doctor, because of persistent pain in my left side, and he did a colonoscopy (about the same time I was diagnosed with Dyautonomia/Mitral Valve Prolapse/Sleep Apnea). They only found a small polyp, so I was glad of that, but I notice that when I'm not eating properly, it gets worse. Small frequent meals helps me, balanced diet, fluids frequently throughout the day, (not too much all at once), and yogurt with active cultures helps the bowel keep the bacteria it needs. I try to stay away from caffeine and sugar, because that seems to add to my problem. I love nuts, too, but if I eat too many, I suffer the consequences. I can go from one extreme to the other, from constipation to diarrhea. I have lost 10 pounds in the last few years. I take urogesic blue for bladder spasms (another problem that I have), and this can work for other cramping in the bowel, as well. I would rather not take any more medication that I have to, so my symptoms have to be severe for me to take anything for this. I try to be as active as I can, and try to make it to the gym twice a week. When I was really dizzy, I couldn't do this, but now with medication for increased heart rate, I can. I'll be honest, I have to push myself to go, but it is worth it, and I can usually go twice a week to use the elliptical machine. I hope this helps:o)