smiles

I used to have what I called Kidney or bladder flushing, where I would have to pee 5 plus times in an hour. It was not at night though. It would happen randomly. I do pee more, or feel the urgency during a flare up or an autonomic seizure. Smiles

That would be great. More people need to know about dysautonomia. Smiles

Kristen's husband, It's me again. Swallow syncope is sometimes caused by over stimulation of the vagus nerve. The vagus nerve goes around and near the heart, GI tract, and is one of the longest nerves from the brain. The process of swallowing and eating and digesting can cause this nerve to over react and cause all these bizarre symptoms. Treatment (if no pace maker is needed) is to try meds that calm the vagus nerve. I wish you the best of luck. I hope her docs can unravel all her symptoms and get each diagnosis separated. It can be a grueling process. Tell her I can relate to her. She is not the only one. Smiles

Wow! First of all I can relate to the issue of the docs not knowing what all is going on for years. That is sooooo very frustrating. You sound like a wonderfully supportive spouse. That is so important to Kristen. My husband also has stuck with me thru everyting. Keep up the good work. I also have had serious issues with convulsive activity during syncopal episodes. Convulsive syncope is not very common so sometimes hard to diagnose and treat. I know that from personal experience. Over the years they have tried numerous meds on me. I have finally found something that helps prevent my convulsive activity. I take GABA now. You can get it at a health food store. It is a neurotrasmitter and an amino acid. I helps calm the crazy messages that cause seizure like problems. It takes 1ooo-1500 mgs. a day. I started gradually and worked up to the 950 mgs. I take now. My convulsive activities would sometimes take IV meds at the hosp. to get them stopped. It was horrible. I noted one other thing that you said that was similar to my situation. I have deglutition syncope (swallow syncope). My doc says there are only 30-50 people in the US that have it. I may pass out after putting a bite of food in my mouth and only chewing a few times or I may be almost done with a meal and pass out. Other times it happens with in 10 min. of eating. My swallow syncope sometimes ended in abnormal, uncontrollable sounds or babbling, rolling eyes, jerking muscles, sometimes muscle contractions... It is hard for docs sometimes to separate out different types of dysautonomic conditions when they seem so all rolled up into one. The passing out while eating very well may be swallow syncope. I have not yet heard of anyone else on this or the NDRF forum (National Dysautonomia Research Foundation) having this condition. I am the only one to my knowledge. It is very difficult to treat. I am stable now but have flare ups of it if I get an infection, hormonal changes, med changes, or other physical stressors. As far as Mayo Clinic, I got denied to go because they didn't think they could help me. My doc made the referral several years ago before we knew what all was going on with me. I wish you and your wife the best. Let me know if I can be of further help. Smiles

I sit in the tub to bathe and do my hair. We have a removable shower head that reaches down to the tub. I wouldn't dare try standing in the shower to do my hair. I also have long hair--but thin. I only put a little water in the tub, do my thing and rinse off with the shower head. It is the best of both worlds. Another thing that helps if I'm more symptomatic after bathing is to lay on the bed and plug the blow dryer in beside the bed. I hang my head over the edge of the bed to blow dry it. It takes less orthostatic energy. I do alot of the things I can do around the house sitting or laying too. Folding clothes, computer, washilng dishes, kitchen things... Smiles

I have adrenergic POTS in which my BP isn't always low but sometimes is higher. I also have the same type of near syncope episodes where I loose muscle control, go limp, can still hear but not respond. I look like I've passed out. I have some central nervous system involvement with my dys. Smiles

it took 1 1/2 yrs for me to get my initial diagnosis. Then it took another year to get the rest of my auronomic disorders dx.

Yes, I take GABA regularly. My autonomic cardio oked me taking it. I have taken it for several months now. I take 3oo mg./day. Mine also has Taurine, Inositol, and some B vitamins in it. It does not make me sleepy but it does lessen the severity of my autonomic seizure type activity. That helps me alot. I am very pleased with how it has helped me. I have not had any blood tests for it or anything like that. I have read that it can help epilepsy. Although mine is not epilepsy. it is none the less just as debilitating. I am happy to be on something natural-- An amino acid and neurotransmitter. I am also still on my lorazapam daily to prevent convulsive activity. I think I need both or maybe I should try increasing my GABA. I started out taking 1 tab/day and now I take 3. Smiles

Yes, I think there is some reason that fluids seem to go right thru some of us. I am like that too. I am on IV fluids daily and still sometimes can get dehydrated. Fluid volume seems to be a big deal in treatment of many types of dysautonomia. Smiles

I will have to try this. 'We got a trampoline for our boys for xmas. I could sit on it and bounce gentlly. I may have to try 3 minutes and work my way up. I am willing to try anything to help!

I have had seizure type activity since the beginning of my dysautonomia. I do not have true epilepsy. I have multiple forms of autonomic dysfunction. All my convulsive actives are usually due to an autonomic flare up caused by infection, hormone changes, kidney/bladder flushing, eating, having a BM..... I am aware of what is happening to me but can not stop it. Like your daughter, I have minimal ways of responding. It has been very frustrating and misunderstood. I have recently found that an amino acid/neurotransmitter called GABA (found in the health food store and approved by my doc) has helped tremendously in minimizing the amount and severity of my episodes. I am also on ativan, robinul, salt tabs, and IV fluid to help them. and lots of other meds for other things. Smiles

fasinating! I have hyperadrenergic pots as dxed at Vanderbilt, in TN. Never heard of these other divisions of pots but it seems to make sense.

I got the flu shot 2 years ago and had no problems. I got it this year and ended up in the hospital, dehydrated, and in full flare up. Sent home and same symptoms a week later. haven't got back to my old regular dysautonomic self yet. Docs say it was that my body responded to the small invasion of a foreign substance (flu shot) and it freaked out.

I have an electric w/c and love it. I have succumb to using a potty chair in my bedroom as needed. It really does help me. I also use a rolling walker with seat and basket. I keep a bag always hanging on my w/c too.

I have that problem too but mine goes way beyond that at times. It may start like that while I am eating or talking. Then sometimes it spreads to the rest of my body. If it continues (or if I don't lay down immediately and cease all activity-including talking) I end up completely limp. I can still hear though. When it happens when I am eating it is called swallow syncope. It is a rare condition--less than 50 people in the U.S. It is caused from a hyper sensitive vagal response. Smiles p.s. It's not the mumps.

I haven't found many people who suffer from this. I also have this problem but it is delayed usually long enough to get off the toilet. I put my head down between my knees sometimes. I also have problems where swallowing will set off symptoms. Just recently I am having problems when I pee too. Bummer for me. Can't eat, pee, poop, or talk too much or I'll go limp and loose my ability to talk. Bummer!! Smiles

I realize that most of you do not have swallow syncope (going limp or passing out when you eat or drink--unrelated to quantity or type of food or liquid ingested). My doc said there was a small recent study done that showed that Detrol LA helped to block the vagus nerve and therefore helps some people with swallow syncope so it was worth a try. I started on the lowest dose--2 mgs. and have not had swallow syncope since (in 2 weeks)!!!!!! I am ecstatic!! 3 hurrays for my doc! Maybe it can help some of you with similar problems. If it helps just one of you it is worth me posting this. Eating again Smiles ps feels so good to be able to eat and drink and not be hungry alot.

I know exactly what you are talking about. I get burst like feelings in my head occasionally. I have convulsions from NCS that usually start with weakness, heaviness in legs, slurred speech, going limp or almost limp, being unable to speak. Then the facial twitching comes, then the rest of my body starts twitching. It's not the normal seizure/convulsion and my EEG and MRIs are neg. Mine are from NCS, autonomic dysreflexia, my periods (i'm premenopausal), infection, or an autonomic flare up. Drs. can't explain it. It's rare. It is real. I'm on seizure meds--3 of them. I know the burst feeling in my head is real cuz it goes with my jerking body. Sometimes it is a precursor to a convulsion and then happens at the same time as a jerk. Maybe your body is not going into full convulsions and you just feel those beginning symptoms. If that is it, thank God you don't have to deal w/ convulsions. My BP goes up before a convulsion too. Another possibility is over stimulation. When I am recuperating from a flare up my brain is ultra sensitive to sights and sounds and movements... and will get pain in my forehead from trying to do something I haven't done in months. That could also be described as a burst sensation. Hope that helps. Smiles

Get a load of this one! My cardiologist just put me on 500 mgs. of Naproxen twice a day because is has recently been shown to have salt retaining properties. It is supposed to help my body retain fluids and thus keep my BP more stable. Ever heard of that one?! Smiles

Just in the last few months i went back to my endo for hormone testing again cuz of worsening symptoms around periods (was skipping periods by then, am in premenopause). I was getting horribly weak to the point I couldn't get out of bed and then had convulsions at the end of my period. Doc said as I was entering menopause my estrogen was dropping and causing all these symptoms of my ANS flaring up. I was already on bioidentical estrogen, progesterone and testosterone that I can not live with out--serioulsly! Labs showed low estrogen. He put me on a triestrogen cream to rub on my inner arms daily and then double it at the beginning of my period and for a few days afterward. I works like a charm. Well, not that good. But it sure does help me a lot. My cardio is pleased too! I still take my other hormones too. The sharp drop in estrogen, which is what brings on our periods, is the same thing that was throwing of my ANS. Hope this helps. It was a life saver for me and my family. Smiles

I've taken Effexor and Klonopin for over a year. Both helped alot. Effexor gave me more energy and helped some with circulation. It also balanced the brain chemicals that were beginning to get out of whack. They have recently switched me from Klonopin to Ativan for my convulsions and am ok on that too.

Toprol to lower HR, Florinef to raise blood volume, salt tabs to keep fluids in my body, 4 bio-identical hormones to level premenopausal flare ups. I'm on many others they are trying to manage my symptoms with but these 4 are my life savers. We're still hunting another magic pill. Smiles

I have a manual reclining W/C that my family pushes me in if I go out anywhere. I'd love to have something automatic that I could control myself. Anyone have one or know where to look for one. They aren't too common. I can sit up but not long enough to make it thru a whole church service or longer than is necessary to go anywhere of significance. I don't want to be stuck at home as much as I am. I'm small so I want something not too big. I need something that has potential to lay all the way down flat, not just a 45 tilt. I know that's asking alot but I figured if anyone would know, my forum friends would know. Where specifically do I look? I don't have Medicare yet but my insurance should cover 80%. From Smiles, who really would like more independence.

Well sunny Sunfish, God Bless you! You are a wealth of info! I am so much better informed now. Thank you for your time to explain all of this. So this means that you take nothing at all by mouth; is that correct? Do you miss eating or is that a dumb question? Are there other options to treat swallow syncope that you know of? I've heard it's a very rare condition. Some people end up with pace makers. I'm wearing a heart, event monitor for a month to rule out the necessity of a pace maker. Thanks again Sunny Sunfish, from your friend Smiling Smiles

What exactly is transcutaneous GI pacing? I've learned a lot just reading all your posts, but what exactly is GI pacing?