Is this some kind of dysautonomia? I'm lost

[Effi]

I have 3 to alternate so when one is spent I get another out of the fridge.

@minkeygirl That does sound better than one big long icepack! Cause it doesn't stay cool forever, I didn't think of that.

Just thought of sth else cause you're talking about cooling from the core: what helps me when I feel overheated is to put the ice pack on the crown of my head. That seems to get the cold to the inside of my body, strange as it might sound.

 

[minkeygirl]

@Effi interesting. We lose heat from our heads so maybe cool from it? I'll have to get my ice maker going and see. Experiment before I invest in an ice pack.

I read on a blog you're not supposed to put my pads in the fridge because they're gel but I always have.

Right now where Im feeling it is my arms. In the morning I wearing long sleeves. Now I feel dampish. 75% Humidity. So not surprised.

I'd feel good in a wet tshirt.

 

[Sushi]

For the heat I use ice packs which come with a little cloth cover. Other (cheaper) packs fit inside, so I can always have one on me head or neck while the others are re-freezing.

I use a frozen cooling vest. I have it on now cause it is about 100 outside and I just had to go to the DMV to renew my handicapped parking permit. Getting back into the hot car, even with good AC, was too much. I had my cooling vest in a cooler and popped it on.

A MS group has tested lots of different types of vests and written them up. They also will give you a medical discount code--that is how I got mine. http://www.activemsers.org/gear/reviewcoolingvest.html

The vests can be expensive but they last forever and, for me, are a life-saver as they allow me to go outside on a hot summer day.

 

[Valentijn]

I did just take my BP sitting down right when I finished with this and it was fine but my HR was 111. @Valentijn It does not show a pulse pressure.

What was your blood pressure? Pulse pressure can be calculated from that.

 

[minkeygirl]

@Sushi, I didn't see a price or link to buy them. I think that is a good idea if you go out. Since I'm always home, my cooling pads work pretty well for me.

@Valentijn I've been drinking Nuun since yesterday and I am noticing it helping. I was actually able to only use 2 fans at low last night vs. 3 on high. I also only needed to shower 3 times I think. That's a huge improvement.

My BP has been all over the place, sometimes shockingly low. like 88/69 HR 89. It was lower than that Monday night. I drank electrolytes and it comes up but still low.

Right now it's better but still weird. I did eat a ton of tortilla chips and took this right after going to the bathroom so may account for the high HR 128/76 hr 101. So it's nuts.

A week ago my BP was fine. I'm going to talk to my NP about this since I've got a nasty taste in my mouth with conventional doctors right now.

I plan and just supping electrolytes all day. You're suggestions were great. Thanks so much.

 

[Mij]

@minkeygirl I forgot to tell you about my Frogtogg Chili pad. It really does work. I wear it around my neck. When it heats up around your neck, you take it off, flick it around and it cools again. The material doesn't make you feel wet(like a regular cloth), just cooler.

http://www.froggtoggs.com/cooling/the-chilly-pad/chilly-pad.html

 

[minkeygirl]

@Mij i have something like that but I didnt like it.

I also hate having anything on me besides my clothes. If they had stayed cooler longer I would've try to tolerate it but they dried out too fast. Then they just felt gross

What annoys me is my exposed skin, like my arms. I'm just now, around noon, starting to feel gritty. It's hard to explain.

But I don't feel hot. A few days ago I would have been miserable. So progress!

 

[minkeygirl]

Just wanted to let you know what is working.

I had some frozen gel packs. I put them iny armpits and it really helps.

Yea! I love a solution with some thing I already had.

 

[kangaSue]

@minkeygirl - Take a look at the symptoms in Autoimmune Autonomic Ganglionopathy, it's relatively rare but one of the the weird antibody things that can occur in various chronic conditions involving autonomic dysfunction including ME/CFS.

 

[minkeygirl]

I just love when someone takes one comment I make about a symtom, in a passing, and diagnoses me with some extremely rare disease. And this was 6 months ago. I don't even remember yesterday.

Like the time someone told me I had MS because of one weird pain I have.

http://www.dysautonomiainternational.org/page.php?ID=124

 

[kangaSue]

I just love when someone takes one comment I make about a symtom, in a passing, and diagnoses me with some extremely rare disease. And this was 6 months ago. I don't even remember yesterday.

Like the time someone told me I had MS because of one weird pain I have.

http://www.dysautonomiainternational.org/page.php?ID=124

It wasn't a passing comment that you made, you asked if your symptoms were some kind of dysautonomia so I gave you some information in reply.

Just for your further information, the link you posted fails to mention the association of thermoregulation and sudomotor dysfunction found in cases of AAG.

[Classical AAG is a subacute disorder with a monophasic onset, partial spontaneous improvement, and high antibody levels (>0.5 nmol/L, normal <0.05). However, some cases of slowly progressive autonomic dysfunction may actually represent limited forms of AAG. Recently the characteristics of AAG have been reviewed, and other disorders associated with AChR antibodies including chronic forms of AAG (clinically similar to Pure Autonomic Failure), postural orthostatic tachycardia syndrome, chronic idiopathic anhidrosis, isolated gastrointestinal dysmotility, and distal small fiber neuropathy syndromes have been also discussed. All these syndromes have antibody levels lower than those seen in typical AAG with subacute onset [3]. Patients with features compatible with AAG, however, frequently have an associated malignancy, most of which are considered paraneoplastic syndromes [4]. The clinical features of AAG reflect impairment of sympathetic function (orthostatic hypotension, syncope, and anhidrosis), parasympathetic function (dry mouth, dry eyes, and impaired pupillary constriction), and enteric function (gastrointestinal dysmotility, constipation, gastroparesis, and, rarely, intestinal pseudoobstruction) [5]. Approximately 25% of AAG patients describe minor sensory symptoms, such as tingling, but objective sensory loss is not present.]
http://www.hindawi.com/journals/ad/2013/549465/

 

[kangaSue]

My answer above has been edited by the moderator and now doesn't fully reflect my response nor the degree to which I felt denigrated by the response from @minkeygirl.

I would like to repeat that I was not making a diagnosis here. Reading through the thread, there is nothing to indicate that this was a time sensitive thread so pertinent information six months down the track need not be judged in this way. Further, being a public forum, information given in answer to posts is not necessarily specific to the proposer and may equally apply to, and be more beneficial to other members of this community also.

In any case, if you happened to have Autoimmune Autonomic Gangliononopathy, getting the information six months down the track is a drop in the ocean as it can take a decade or more for all the symptoms to be apparent before leading to the correct diagnosis.