New Questions

[Nela]

So... I thought I would ask you guys since I have had some episodes lately and I wonder if any of these could be associated with Dysautonomia.

- Hives from the cold???? I had noticed this some years ago. Sometimes when it's pretty cold, I would break out in nasty hives. I would only get them where I got pretty cold so face, hands, feet, and thighs. It happened last week and it caught me by surprise. I reacted really badly too. It was maybe -10C or so so not very very cold but after about 10-15 mins being outside, my hands got quite cold and before I knew it, they were burning really badly so I came inside only to notice that I had nasty hives. I dipped my hands in lukewarm water and that didn't do too much. I took an antihistamine and they went away shortly after it kicked in. It was not at all pleasant though. The thing is, I had been having hives on the back of my thighs when coming inside from outdoors for days as well. The only thing I could think of is the cold causing it as the area was really cold. I could feel it. It's not constant though so I don't understand? I heard of people reacting like that to cold but they would do an ice cube test and react. I tried it but didn't react?

- I don't remember if I asked, nor the answer but if you have POTS can you go on rides? I was told I have dysautonomia but not specifically what kind but I can imagine that rides would be a problem for people with POTS?

- Can someone please explain this to me again? I have highs and lows. Everything just seems to go out of whack randomly. I've been known to have hypothermia for no reason at all. Low blood sugar levels. Low Blood pressure. Then sometimes, I have high everything. Lol. So is this just a general malfunction? What kind of dysautonomia causes that?

- Frequent urination. Now, this is completely new for me... I have never had a problem before. I used to go to the bathroom about twice a day, 3 max. It used to amaze my mother that I could drink so much and never need the bathroom. In fact, that was one thing that had docs worried because they assumed it was related to diabetes since it is so common in my family. However... I can't stop!!! It drives me absolutely mad!!! It's not constant either. It just comes and goes and has been doing so for about a year now. There's no burning or anything and considering that it comes and goes, I don't think it's an infection. I've also been on antibiotics but that doesn't seem to have changed anything. It happens a lot after eating mostly. I'm going to the bathroom about 3 times a night now as well though. It really drives me up the wall. Any ideas?

- I had sinusitis/bronchitis/throat ulcer in November. The thing is, ever since, we cannot get my asthma under control. I am going to see the specialist this week but I was curious about it having affected my body's response to things. Is it possible that my body is overreacting to everything all of a sudden because of the bug i caught?

I still don't understand any of this Thanks for your patience!

[Sarah4444]

Nela, have you looked into the mast cell stuff? People with MCAD report things like frequent urination, sinus infections, hives (I think it's called Cold Urticaria when it's caused by low temps). Take a look at www.tmsforacure.org or one of the mast cell forums and see if it helps you make any sense of your symptoms. I belong to the Canadian Mastocytosis Society and find their forum well organized and easy to use. MCAD is also connected to hyper POTS, which would explain your highs and lows - if you'd like a link to the article about this, let me know. The main author's name is C. Shibao I think.

[sandymbme]

Just about any ride (as in amusement park rides) would be a bad idea. One of the major symptoms of POTS is an inability of the body to compensate for gravity when one is changing position. We are MUCH more prone to syncope (fainting) episodes with rapid positional changes.

As for the rest of your issues, they could be POTS-y stuff, it's hard to tell sometimes which came first, the chicken or the egg. Just be sure to bring up any new symptoms with your doc. Good Luck!

Sandy

[hilbiligrl]

Hello Nela ~

I have never had hives, but that doesn't mean it isn't dysautonomia related. I did want to mention that have highs and lows out of nowhere, nothing is every constant... and well, that's about the only 'constant' thing about this disease in me. I had to comment on the urination: I have had this problem for YEARS. Uh-mah-gosh is it horrible! It comes in spells but seems to be one of my more frequent symptoms, as it seems to be present about 80-90% of the time for no apparent trigger that i can find. And, i can only manage about 1 or 2 glasses of fluid a day. I am never thirsty and my stomach turns at the thought of drinking anything. So, I will drink very little and urinate a huge amount, more than what i take in. Today, I got up at 8:30 am... and it is 5:35 pm right now eastern standard time and i have marked on my calandar for today every time I have urinated. So far it's been 24 times. 80% of the time, it's quiet a bit.... very little is it a small amount. If I up the intake of fluids, it's even worse.

This is one of my worst symptoms and some days im soooo tired from this and so nerve wracked by it that i just sit and cry. I have told this to docs for years, yet they just say 'that's odd'. I am not on meds for this yet, but i cant wait to try them.

I hate that you have to go through these things, because it is easily torturous, but know that you aren't alone.

God bless....

hilbiligrl

[Nela]

To be honest, I can't seem to make much sense out of anything I have been reading. It's especially hard because I really have no idea WHAT I have other than being told 'dysautonomia'. Lol. I do often experience vertigo when getting up but maybe most people get that as well when getting up too quickly. I don't know. One thing I do know, is I have not had any issues with rides other than sometimes my heart racing. I have the beta-blocker for that and even if my heart races some after a ride, it hasn't been bad enough to make me sick. Because of this, I figure I do not have POTS? On the other hand, I am a lot more prone to fainting when I get those 'bad days'. In general, I do well but when the episodes hit me, it's a whole different story.

The mast cell stuff, really isn't something I actually comprehend. I'm really not understanding how you would differentiate simple allergies from this? I've always had allergies and they run in my family so I really am used to them. The only difference is that I was told they would ease up but they've been getting worse instead. Aside from being able to say that I recognize way too many of those symptoms, I really cannot say more than that. That's the problem with the nervous system glitching that way though. It just seems that anything that can go wrong will. With dysautonomia, the symptoms you get are so general and widespread that it's hard to pinpoint and say 'this is what I have'. It took my doctors so long to figure things out, so I am not expecting to figure it all out myself. A lot of the articles use medical terms and I just don't want to misinterpret and over analyze things either. It's frustrating though, because I would really like to understand more so I can manage better.

Hilbiligrl, awww I'm sorry to hear you experience it too. It's quite a frustrating thing. I too just want to cry sometimes. It really gets on my nerves, especially when I am trying to sleep. Lol. It just comes and goes. I've been wondering if maybe there isn't some stress coming into play as well which would in turn, exaccerbate the dysautonomia and making this appear.

I don't know... I can't make sense of anything... Grrr.

Thanks guys!

[gertie]

Nela, I don't get hives from the cold but I do stay cold a lot.

I have Interstitial Cystitis so I know about urinary frequency. When I was at my worst I had to go to the bathroom every 15 min, it was a nightmare. Foods are a trigger. You might want to check out "ic-network.com". I believe there is a list of safe foods to eat on their website. Are you on any medication for your asthma? That could also be a trigger.

I can't stand on a ladder without getting dizzy so I wouldn't be going on any rides.

Good luck!