Kate2011

Interesting question, but it may not be completely accurate just because I don't know too many people in their 70s who participate in forums... I'll be interested to see how it goes.

Hey everyone, I was curious if anyone else has cut out gluten in an attempt to help control symptoms. I read somewhere that most patients with dysautonomia are sensitive to gluten so I tried cutting it out and to be honest I'm feeling a lot better. I have more energy and my nausea is a lot more manageable...meaning I still get nauseous a lot but I have times when I feel normal and healthy too! This is going to sound really odd but I actually seem to be feeling warmer...I'm not sure if that makes sense but it's how I'm feeling! Is anyone else on a gluten free diet experiencing similar relief? Kate

See we actually tried steroids to bring me down from an allergy once and though I'm not allergic I have really bad reactions to steroids. I get incredible mood swings, laughing hysterically one minute, sobbing the next. I even hit a classmate when I went to get my homework from math class. It was completely insane. I'm hoping there are other options because I'm really not able to function when I'm on steroids.

I always associated this with my midodrine (I have no idea if that's actually what causes it but I feel like it started around the same time). It's weird though, especially the more lucid dreams. I find myself having more problems waking up when I have these dreams too, it seems harder to wake up before the dream finishes. (I hope that makes sense.)

I have low temp too. (It's so weird to suddenly be able to relate to people by the way, this forum is great!) I run at about 97 or so most days. The last time I had a fever along with my flu I had Swine Flu and it spiked to 104. Normally a fever for me is about 99. I hardly ever break 100.

Hmm that's all very interesting. Ya I'm not exactly sure. See my allergies have been consistent, I had my first allergy at 18 months and they haven't really stopped since then. Maybe it's not related since I didn't have all the other symptoms back then. Oh, and this is random but does anyone know if dysautonomia is something you are born with that then worsens or something that develops? I ask because I'm kind of been "odd" my whole life (digestive issues, allergies, urticaria, double vision, even occasional fainting) but it didn't get really debilitating until I was about 16.

Oh! Haha I just realized there was a page two! Sorry guys I thought my answer hadn't been posting! I can't believe I've been posting and reposting! Ridiculous! Oh and hi to all the Kates! Dizzy and Katybug your information is really helpful because I wasn't really sure what to expect. I've had worse tests done though so it put my mind at ease actually!

It's a nerve study test. I don't know too much else about it though. My doctor ordered it because of the tingly, numb sensations in my extremities. I think it's interesting to hear that you experienced an increase since taking Midodrine though, because now that I think about it mine's also worsened since starting Midodrine.

I use medhelp.com to track my symptoms. They have a disautonomia tracker as well as a sleep tracker. It's not a perfect tracker, some of my medications are missing on the treatment section, but overall it's a good tool they even have stockings and diet change options. This is the dysautonomia link, you can get to the others from this page as well, they have quite a few other trackers. http://www.medhelp.org/user_trackers/gallery/dysautonomia

I too can tell when I'm having a flare up. I typically end up sleeping (like not able to get out of bed at all) for easily 16 or more hours. I get a lot more lightheaded (walking is difficult and showering is nearly impossible), I get very emotional and anxious, I tend to be more antisocial because I feel so awful (I almost get a little mean to others), my double vision worsens (to the point where my glasses don't help) and I get too nauseous to even eat. On good days I may be nauseated, a little lightheaded, and need my glasses, but my mood is always stable and I'm able to use my recumbent bicycle and work part time. Also, I tend to sleep about 8 to 10 hours. It basically is some of my normal symptoms magnified by like a thousand with added mood swings.

Ya, definitely do what your body feels like. It did take me about a month to get used to it though, just fyi. :-) Either way, good luck!!! Kate

I have a bunch of random dysautonomia symptoms. My digestive system is absolutely useless, I have IBS and acid-reflux (I'm still getting more gastro tests though so I could be diagnosed with something else in that area, but hopefully that's it). I'm lightheaded and nauseous most of the time. I have a lot of fatigue, I sleep about 9 or 10 hours a day when I can. Orthostatic Intolerance, with a tendency towards passing out. Diplopia (double vision). Raynaud's (sp?). Cold Urticaria (my doc thinks that's related...it's an allergy to cold (no I'm not kidding they diagnosed me with an ice cube). A diagnosed "weak immune system", but no autoimmune disorders (although I'm not sure if that is related to dysautonomia). A pretty constant elevated pulse rate. And varying degrees of low BP (my lowest was 60/40, normally it's about 88/?). I haven't been diagnosed with a specific kind of dysautonomia yet, and I'm still having tests run and treatments administered. Oh and all the allergies of course if that's part of it, I'm new to the world of dysautonomia (I was only diagnosed 9 months ago). Also, I left steroids off the list of allergies because they're just a sensitivity but it's severe enough that I avoid those like the plague as well. I'm just greatful that my symptoms aren't as bad as some of those I've seen on this site. Currently I'm on Midodrine 3x daily, Dexilant, and Amitiza. I'm also on a gluten-free diet and a kind of dysautonomia meal plan (small meals 6 times daily, no alcohol, caffeine, protein with each meal, increased salt intake). I wear compression stockings and have an abdominal binder I'm not too fond of. I try do leg presses and ride a recumbent bike as often as I can too. Gotta admit I miss running though. :-/

What length are you wearing? I wear my full-length most often and they seem to do wonders (the only time I feel significant improvement is when the compression is on my stomach and thighs. For a while I too felt kind of tingly-ish when I wore my stockings and even a bit light headed. And my toes still turn pinkish red. When I spoke to my doctor he told me that those are all good symptoms (but still, talk to your own doctor as mine may have been kind of different than yours). Anyway he said that the tingling in my legs and the pinkness in my toes are actually from increased circulation and that that's how most people normally feel. Also I learned that my lightheaded-ness was actually from increased blood in my head. :-) So for me all the symptoms were good and after time I got used to it (well sort of... for me my body just started to associate those feelings with how good I feel when I'm wearing my stockings.) So basically, now I don't mind the feelings, I've gotten used to them and they kind of make me feel better! Like the stockings are working correctly. But please, please, talk to a doctor about it! Everyone's body is different and I don't want you ignoring important signs from your body without speaking to a professional and really looking at everything closely. Kate

Frugalmama: I'm on midodrine too and have noticed an increase as well. s-pot: I don't know too much about the test itself as I've never had it, but from what my doctor tells me it's a nerve study test they do when you have cold, numb, tingly, or "sleepy limbs" frequently. It's supposed to test the nerves in your extremities if I understand it properly.

I wish I knew exactly what it is. All my Doctor told me was that it's a nerve study test that they give people when they experience numbness, tingling, or loss of sensation in extremities. Hope that explains it at least a little bit.

I loved your story. I wish people understood this problem more too. I live at my parents home (I'm 22 and after a couple horrible years at college I had to move back home to get real treatment and diagnosis -got my degree though so that's a plus!) and my Dad is notorious for underestimating what it's like. His advice is always the same... you should go for a run (I used to run before I got sick) or "well, if you had a job you'd have to be up and moving so why don't you get something done. My Mom tries but doesn't really get it either. I wish I had your positivity all the time!

Dizzysillyak what doctor do you see and where exactly is she? You say you live near Orlando so I figured I'd ask. :-)

Me too. Crossing legs, resting my head on my hand for too long, resting an arm on a table at an odd angle, etc. It happens to me all the time. I'm going to get an EMG NCV in a few months which should hopefully reveal something behind it all.

I've never take Cipro because after I took Levaquin I went into anaphylaxis. If you have a history of drug allergies I would definitely start slow and make sure you aren't alone when you start taking it. Good luck.

Quick question. Sorry to derail the post for a minute. By eye focus problems do you mean double vision? I have Diplopia (sp?) and I've never known if thats a typical Dysautonomia issue.

Oldest of 2 and my symptoms began at about 16 or so, although looking back I can see indications my entire life. Eveything escalated further when I was about 20 or 21.

Good luck with everything! I'm sure they'll work with you so that you can schedule a few things at a time. Like I said they're excellent at working with patients. I like mine all at once because it take some travel time off my schedule (I can't drive long distances with the way my condition is at the moment...I always have to stop for naps (no joke) so the less I'm driving the better. And I'm only 2 and a half hours away! I can't imagine being 7!

Hey again. I'm wondering if anyone has any experience with naturopathic medicine. I've heard that food sensitivities can make symptoms worse and I've starting looking into naturopathic physicians but I have no experience. Does anyone see a naturopath? Do they normally have experience with Dysautonomia patients? Also, does anyone know of any naturopaths in central florida that they trust? I've located one in Orlando but I'd love to have someones recommendation before going in blind!

I have all three but I find that the waist high help the most. Knee high are pretty much useless in my opinion, and thigh high help but they are hard to keep up and don't help me nearly as much as the waist high. My doctor told me that more and more research is coming back recommending either waist high stockings or abdominal binders because they compress your mid section. Apparently there is a large blood vessel around there that can be affected. I'm not sure which it is though, I can't remember.

wow ya I haven't been evaluated for mast cell disorders. I think it's probably a good thing to ask about though. I am really getting nervous you know? I'm 22 and the list seems to keep growing and growing.