Is this some kind of dysautonomia? I'm lost

[minkeygirl]

I have had some of these symptoms for awhile, and I thought they were just weird ME things. But I'm wondering now if they are part of one thing and actually some kind of dysautonomia.


• I do not sweat. This is sort of new. My pits got wet last summer but never really sweat even in 100º heat.

• Intolerant of heat. It's not even that hot, maybe 77º and I have 3 fans blowing on me. If I start to get warm, it feels like it's from my core, the only thing that cools me down is to get in a lukewarm or cool shower. Spray bottle doesn't help. Every 2 hours or so I have to get in the shower. Exhausting.

• I never sit up (haven't for a few years)

• I sit to do anything. Wash dishes, brush teeth etc.

• I'm hypersensitive to light. Practically live in a cave.

• I can feel my heart beat all the time but it doesn't affect my BP.

I DO NOT

• get lightheaded when I stand. (I did get lightheaded this morning for the first time I can remember and drank some Nuun and was fine.)

• fall or pass out

• BP and HR is mostly ok

* I tried POTS test and HR went up right when I stood but when I redid BP at 8 minutes I got an error on my monitor. Been too tired to try it again.

I do take propranolol for the heart beat stuff but that is only about 20 mgs at night so I can sleep.


Please do not get technical on me. I won't understand and my brain will shut down. Basic one, two threes please if that's possible.

Do I need a cardiologist? I have to go to who is in my plan.

Please Tag me so I get an alert.

Thanks

Sorry if this is hard to read with all the paragraphs. I wasn't sure if I should separate the bullet points. let me know if it's a problem.

 

[Mij]

@minkeygirl the non sweating might be due to adrenal insufficiency.

I don't have the typical dysautonomia symptoms either, but I suspect I have a form of it. Looking up and down or reaching my arms over my head, showering (particularly in the morning) makes me quite ill. I need to lie down soon after.

 

[minkeygirl]

@Mij What's killing me is this sensitivity to heat. I've been sensitive but only when it's really hot. This isn't that hot. Not sweating is something I think. Every two hours I have to get into the shower, sort of dry off. Even just laying here.

I'm not sure what to do with this or who to see. I was taking OTC stuff for adrenals and it did nothing so I stopped.

My ME started with an endo misdiagnosing me with a bogus adrenal disease which he treated with cortisol. I'm not anxious to go to another if that's what I need

 

[Mij]

@minkeygirl @SOC @Valentijn could help you with this. I'm unable to get a specialist where I live and I wouldn't even know which one to go to. I used to love the summer but now I dread it, I stay horizontal on warmer days.

The only thing that helps me in general is eating less or smaller portions throughout the day.

 

[SOC]

@minkeygirl @SOC @Valentijn could help you with this. I'm unable to get a specialist where I live and I wouldn't even know which one to go to. I used to love the summer but now I dread it, I stay horizontal on warmer days.

The only thing that helps me in general is eating less or smaller portions throughout the day.

What exactly can we help you with? Finding a specialist? Directing you to info on various forms of dysautonomia?

 

[minkeygirl]

Thanks @Mij Id have to go to whoever is in my plan. There are some good cardiologists.

I have 3 of these cool packs that save me

http://www.explosivepowersports.com...oBUsuN4YiDNDZhZhJhGgzphsOLvLZrtbInBoCQ-_w_wcB

 

[minkeygirl]

@SOC I don't know what this is? Posted here just taking a shot. does this sound like dysautonomia? I don't even know.

I can't go to anyone not in my plan. So what specialty?

I read about NMH. Not that. Maybe not Pots unless I can figure out BP and HR.

I thought these were individual symptoms. Maybe they are but I have no idea. Just looking for thoughts As I'm miserable

 

[Mij]

@SOC I would like to see a specialist in my areas since I can't travel far. I discussed it with my GP a couple of months ago but she didn't understand. She thinks the vertigo problems I've had since the beginning of my illness are the cause.

 

[Mij]

Thanks @Mij Id have to go to whoever is in my plan. There are some good cardiologists.

I have 3 of these cool packs that save me

http://www.explosivepowersports.com...oBUsuN4YiDNDZhZhJhGgzphsOLvLZrtbInBoCQ-_w_wcB

I have a 18,000 BTU Air Conditioner. I started menopause last year and I have it on even on milder days now. A cooling cushion is nice, but I need freezing cold air blowing on me. I would sleep on a slab of ice if I could.

 

[minkeygirl]

I've been looking into an AC for my bedroom and was planning on next summer. Before this hit. Lacking a slab of ice my pad has to work.

Do you live in your bedroom?


Been in menopause for years. Never was an issue.

Maybe just buy a big commercial freezer and sleep In that?

 

[Mij]

@minkeygirl my A/C is in my main living room, I have a futon set up so I can sleep there when it gets really hot.

Hmm, I have had dreams of living in a big commercial freezer I thought of getting a cooling vest but I don't go outside if it's over 26C. I pretty much have everything delivered now.

 

[minkeygirl]

I'd have to live in my bedroom. There's
No place for one in my LR. Hard to explain.

I have a back junk room not that far down the hall from my bedroom. I could get s giant one and put some kind of curtain up. It's
Too small almost to live in. Mmm

Gonna work on my hormones and see if that helps. They're a mess and need to be fixed anyway.

I'm like you. If I can't get it delivered I don't get it. I go out to get my mail. That's it.

 

[SOC]

Please do not get technical on me. I won't understand and my brain will shut down. Basic one, two threes please if that's possible.

Do I need a cardiologist? I have to go to who is in my plan.

@SOC I don't know what this is? Posted here just taking a shot. does this sound like dysautonomia? I don't even know.

I'd say that dysautonomia is a very likely possibility.
It sounds like a tilt table test would help with the diagnosis. If your BP machine got an error after 8 mins of standing, that could mean that your BP was too low or too erratic to read, which could be a sign of dysautonomia of some type.

A dysautonomia specialist would probably be the best person to see, but they are not easy to find. A cardiologist is the specialty most likely to be near and in your plan. If there is an electrophysiologist (a subspecialty of cardiology, so they probably work in the cardio dept of your hospital/clinic), that would be the person to try to see.

 

[Valentijn]

@minkeygirl - Having your blood pressure monitor give error messages might indicate that your pulse pressure (not blood pressure) eis getting low. That's the difference between the systolic (top) and diastolic (bottom) numbers. 40 is about normal, but some ME patients have it go to 25 and under pretty frequently, meaning that a lot less blood is being pumped with each heart beat. Most heart rate monitors (and even doctors) will struggle to detect it when its under 20, because the pulse is then weak.

The error on your monitor might be due to something else, but in any event it might be significant, especially if that's a regular occurrence. It is a potential red flag that might indicate some form of orthostatic intolerance or related problem.

I stopped sweating soon after Lyme exposure 20+ years ago, and after that it came and went. I even had heat exhaustion a couple times, once while working on the farm in the summer. The other kids were all dripping in sweat and the fertilizer was caked thickly onto their hands, but mine were completely dry and just slightly powdery.

Inability to handle heat and cold can also indicate low blood volume. In the case of heat, our circulatory system brings our blood near the skin to cool it off. But if blood is moving slower than it should, it's not going to do a good job of cooling you off. Combined with the failure to sweat, that could be quite miserable.

1. I'd like to know if your pulse pressure (not just blood pressure) is actually normal. And it might be good to see if your monitor gives error messages frequently. Taking your blood pressure while sitting down is just fine, even with your feet up if you can't handle it with your feet down. If you are having a blood pressure problem, it will probably show up while sitting, even if it's milder and takes longer to hit. A good time to check it is when you're feeling exhausted and on the verge of needing to lie down again.

2. 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. Something which is also suprisingly helpful is a small bowl of water and a washcloth. I just wipe down my face, neck, arms, and the exposed parts of my legs. It dries off quickly on a hot day, but it cools you down in the process, so doesn't have to be repeated immediately. I also add ice cubes periodically if I can, but it works pretty well even without ice cubes. Basically the water helps absorb some of your heat, then evaporates, leaving you cooler. Drinking ice water can also help a bit, for more internal cooling.

3. Regarding a cardiologist, I doubt one would be much help. They rarely seem to know much about orthostatic intolerance beyond the very basics. A dysautonomia specialist is probably a better choice, if you could find one. Given the very high prevalence of OI and related problems in ME patients, we really should all be seeing one as soon as we're diagnosed.

4. Electrolytes might help in keeping your blood volume up, which could help OI a bit as well as helping with temperature regulation. I've been doing 1/4 tsp of Lo-Salt (66% potassium, 33% sodium) from the grocery store in a glass of water several times per day and it seems to help somewhat. Lemon or lime can be added for flavor, and sugar might help with absorption, but I found that I actually liked how it tastes with just the salts in it. There are also commercial mixes from iherb and such which are fairly cheap in many flavors, though sports drinks should be avoided since they are 1% elecrtolytes and 99% sugar. Basically if I start to feel nauseous or a little thirsty, I stop drinking the electrolytes for a bit and drink more plain water instead.

 

[Effi]

Maybe just buy a big commercial freezer and sleep In that?

LOL @minkeygirl This reminded me of something. I used to have a heat problem in my head (you could bake an egg on top of my head, that's how bad it was - no fever though). So I looked into buying this: http://www.amazon.com/gp/search/ref=a9_sc_1?rh=i%3Aaps%2Ck%3Acranial+ice+cap&keywords=cranial+ice+cap&ie=UTF8&qid=1435046920 (I didn't buy it in the end.)

There's also the option of an extra extra large ice pack that could serve as a blanket/mattress cover: http://www.amazon.com/Thermafreeze-...435046733&sr=8-1&keywords=medical+ice+blanket

 

[Marco]

Loss of sweating can be a symptom of neuropathy and related overheating is a problem for those with diabetic autonomic neuropathy. Seeing a cardiologist would seem sensible.

 

[minkeygirl]

@Valentijn Thanks for the answer. My monitor does show pulse pressure I think so when I take it next I'll check it.

I can take it with my feet down. Since I'm always horizontal tired or not, I can take it after I've done something. But usually it goes up even from just talking.

I started 5 mgs DHEA this morning and I've noticed my sensitivity to light is not nearly as bad and I just feel a bit better. In a few days I may be climbing the walls but I need to get this done. I think my hormone imbalance is a big part of this.

I am also drinking 1/2 Nuun in 16 ozs water when I wake. Nuun I think is good for me since the Lo-Salt makes me really sick, nauseated with a headache. I'll work on drinking more water, although I hate it. It's exhausting getting up and peeing all the time.

I tried the wash cloth last night, it really doesn't help much. I'm good with a spray bottle to tide me over til I can get up and rinse off in the shower which cools me from the core. Last summer I put a plastic sheet on my bed, wet a pillow case and laid it on me, with my cool pack under me. But then it was 100º

I'm sure I could find a specialist but I can't afford it. I'll mention this when I next see my PCP but I'm not making a special trip. I see my NP next month and I think she's the best one to help me with this, especially if it's hormone related. @Marco I'm not diabetic so not sure that's the right direction for me.


@Effi, that huge sheet is cool but I don't think practical. How do you freeze it? I like my comfort pads. I have 3 to alternate so when one is spent I get another out of the fridge. I use my old ones under my computer to absorb the heat.

 

[Marco]

@minkeygirl

I wasn't suggesting you were diabetic but several studies suggest that autonomic dysfunction is common in ME/CFS yet no explanation for it as yet. Meanwhile peripheral neuropathy has been confirmed in a significant proportion of fibro patients who as you know have a substantial symptom overlap with ME/CFS.

PS - I have the same problem - I'm severely heat intolerant but I sweat buckets.

 

[ahimsa]

@minkeygirl - I don't have any additional comments on the medical issues. Everyone else posted some good ideas.

I do have some low tech ideas on staying cool.

1) Drink lots of iced drinks and/or eat popsicles. I find when I get overheated that getting cooled off from the inside works much better/faster than anything directed at the outside like fans.

2) I saw a tip somewhere that suggested using a clean tube sock, filling it with dry (uncooked) rice, and then putting it in the freezer to cool. After it cools you can drape it around your neck.

3) Exertion usually makes feeling overheated worse. So try to do even less than usual. (I say that knowing that many folks with ME have already cut activities down to almost zero!)

4) If you do have some form of orthostatic intolerance (OI) then the standing in a shower (you mentioned taking 2-3 per day to cool off) may be doing more harm than good. Standing is generally pretty bad for most kinds of OI. A shower chair (available at drug stores) may help.

If you have a delayed reaction then the energy drain from standing may sneak up on you. You may not feel it while you are standing.

Not to mention the energy of getting undressed, drying off after the shower, getting dressed again. All that movement will deplete energy and perhaps increase that overheated feeling.

These are probably very obvious tips but maybe they will help!

Edit: I just thought of another thing - do you have a container you can fill with cool water and keep your feet in? That might be another way to help stay cool.

 

[minkeygirl]

@ahimsa Thanks for the good ideas. I usually sit in the shower. When I go in to cool off, like I just did, I walk in, get wet, walk out, toss my rob over my shoulders and put my clothes back on wet. I know it's exhausting but it's the ONLY thing that helps.

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.

Pretty much everything I do is exhausting and has an immediate or delayed effect. Since I don't sit up a bucket of ice won't my feet which are always cold anyway. That might be too painful. I actually do have a sock filled with rice that I use as a heating pad so that might be an idea. I'll have to rethink what to put it in though because it could get soggy as the cold melts.

Thanks all for the great ideas. I think right now working on hormones, (do feel different with the DHEA) and getting my NP involved is the way for me to go right now.

@Marco I don't think I ever sweated much but I think I would feel better if I did. Buckets maybe not LOL

Time for some Nuun!