Feeling Too Hot Most Of The Time But Nights Are The Worst

[blueskies]

Hi,

First off it's nearly officially winter in Sydney, Australia although you wouldn't know it from the weather as it's been much warmer than it should be, but still cool with some cold early mornings. At these sorts of temps I usually do okay body-heat-wise. Not as badly as I do during a hot summer.

But I am experiencing feeling overheated most of the time. Although a nuisance it's easier to cool myself down during the day. But at night it's a real problem. I go to sleep under a sheet and light throw -- something you'd normally use on a sofa. Its light and much cooler and smaller than a blanket. The window is open letting in the cool/sometimes cold night air. Only sometimes I can't tell it's cool. Because I'm feeling so hot.

Usually I go to sleep feeling just a bit warm. I've been feeling just a 'bit too warm' for past 4 years. But now I wake repeatedly during the night feeling hot inside my body and head like I have a fever. I have to get up and get something to drink, sometimes have a cool shower, and then get back into bed lying on top of the bedclothes with the window still open and the fan on. (To complicate matters, although my face will feel too warm too I can't let the fan blow directly on my face because it will feel begin to feel painfully too cool and start to ache -- unlike my body which rarely feels too cooled by the fan). When I feel cooled I can go back to sleep and just pull the light covering over me. I go back to sleep feeling like I usually do when I go to sleep at the beginning of the night. Only to wake and hour or two later feeling very overheated. I go through the whole routine of cooling down again, to fall asleep and then wake feeling very overheated. I wake with tachy often, too. But not always. The only time I don't wake feeling hot is when I wake with migraine - I've got breakthrough migraine pain, pretty mild for me, at the moment and I don't feel hot. Sometimes I wake feeling hot, sometimes it takes a few moments for the overheated sensation to start. I do have erythromelalgia -- hot burning skin sore to touch -- but I'm not sure if it's that, or POTS tendency to over heat due to dysregulation.

I haven't really found any articles on the net yet in regards to pots and this feeling, and I'm just wondering what is causing it. It's actually a problem I've had occasionally for the past 12 years but in the past 6 months has been a constant. I believe an adverse reaction to a medication about 6 months ago has made this symptom stronger. But it was the middle of summer then and I figured that it was just generally hot and my potsie body wasn't handling it. But now it's cool at night and getting colder and my feeling way too hot is persisting.

sorry for long post,

blue

[spinner]

Dont ever be sorry, because it is what it is. We all question ourselves sometimes---is this really happening to me? This doesnt make any sense.

Aout 1.6 to 2.0 years ago i started burning up and saw a physician who had worked for national institutes of health here in US. He was more of a mast cell guy than POTS or DA per se. He immediately remarked, "youre not sweating". He warned me that i could potentially be suffering "anhidrosis of sympathetic nervous system".

It got scary then because it was winter here and one time someone lit a fire and i nearly fainted straight out (we've all been there too).

He confirmed a negative on mast cell (surprised) and my next symptom was that i was never thirsty. In the wake of this, i got severely dehydrated one time, and my heart rate slowed down to dangerously low--i was hallucinating. STAY HYDRATED no matter how you feel. Ended up in ER late at night while traveling---totally hallucinating and barely made it there. I had no concept of being thirsty and wasnt smart enough to keep drinking wate ranyway, because all my life i'd used water for thirst only.

He prescribed pilocarpine to see if i COULD sweat, which i could, but it was very little. Flash forward six months and i finally got the POTS sweat test cleveland clinic and was "diminished". Actually to me, it was major because it took me about 30 min to start sweating much at all in a 115 degree box.

Between then and now i got a bipap machine rather than cpap, and its improved the damage done to my sympathetic/autonomic nervous system somewhat, and today, i sweat normally, get thirsty, and can "cope" with heat (although i moved north to escape the 100 degree junk. Its very humid here though.

It strikes me that these nervous system disorders have symptoms that can come and go as you "heal" at times. And I know your fear---theres nothing more scary than not being to do anything for fear of overheating. People have no idea what that is like.

So do a lot of research on "heat intolerance". I also have "exertion intolerance" and this has not improved much.

Research is your best friend because these things are highly individualized. Check out periodic paralysis (potassium) too. Use low sugar sports energy electrolytes. Consider a sweat test. Have you checked mast cell? PM me if i can help. You can overcome this but like everything else you gotta be armed with information

[spinner]

I forgot to add that direct sunlight was a nightmare then. I suspected it had something to do with vasoconstriction.

I stayed out of it for a LONG time, and i used vitamin d to compensate.

[khaarina]

Blue, You have described exactly what has been going on with me lately. I used to be cold all the time, but now I am hot all the time and every night I wake up feeling like I am cooking from the inside. When this happens, the veins in my hands and feet become bright blue like I drew them on with a blue Sharpie (I am fair skinned). I keep my house at a constant 69 degrees F, so I know it is just me. I am between doctors right now and I don't know what is going on exactly but I suspect that it is due to vasodilation. I say this because when I take my Midodrine I vasoconstrict and feel cold, but I was instructed not to take the Midodrine at night due to the possibility of supine hypertension, and that is when I am the hottest. This is just a guess though. The only thing I have found that helps is to rinse my feet and hands off with cold water (cold showers wake me up too much), or hold an ice pack against my wrists and palms. I also drink a lot of water before going back to bed. I hope you find some answers.

[blueskies]

Thank you spinner and Kharrina,

It's a relief to know that other's have this problem too. I was diagnosed with erythromelalgia at the same time as I was diagnosed with pots. So perhaps it's the erythromelalgia symptoms getting stronger and changing in form. At the time I was diagnosed I wasn't sweating, spinner. A hot flush, even during the earlier years of menopause when I should have been dripping would leave me dry. For 6 years I did not sweat at all that I could notice -- I figure I must have a bit but when I exerted myself to say, clean the bathroom, before that 6 year period I was one of those people that would sweat like crazy. Any exercise, especially stuff that would demand cardio levels would cause it. Then I stopped sweating. I always drank more fluids than the average person. Heaps. When I was sweating and when I wasn't. I've always urinated very frequently. I still drink enormous amounts of fluid -- about 5 litres a day of mostly water, or skim milk mixed with water. I can't drink sports drinks because I am highly intolerant to many additives -- both artificial and 'natural.' Plus I have problems with colourings too, big time. Because my bp is now high I don't salt load -- it was never great for me to begin with -- but I make sure I have some salt everyday. If I miss a day with salt I always feel worse. Whenever I have salt loaded in the past (before my bp started to read high a lot of the time)it would make my migraines worse. I walk a fine line with salt and migraines/pots generally, I find.

Anyway, back to sweating: After 6 years of not sweating noticeably I started to sweat. I was cleaning the kitchen floor one day and I noticed beads of it on my upper lip. I got so excited, LOL. And then my ability to sweat came back over the next few months and I was back to being a profuse sweater.

Now I switch between becoming overheated and sweating too much, to becoming overheated (even when it's cool to cold) and not sweating at all or only a little. 'Strange days, indeed.'

I was diagnosed with erythromelalgia and POTS by a vascular diagnostician. A very, very bright doctor. Bless him. But treatment of the burning, hot skin stuff got caught up in my treatment of allergies and food/chemical intolerances. I'm now allergic to a lot of stuff. Experienced anaphylaxis to aspirin and to something else we aren't sure of. Have 'milder' allergies -- skin rashes and flushing with swelling -- to other things. This is, at the moment, the symptom that I tend to worry about. And I always have hives somewhere on my face or neck or arms. Somehow or other I think I've gotten onto the wrong track when it comes to these feeling of heat etc -- I was treating as though it was urticaria, something I also have, under the guidance of my allergist. I need to revisit the vascular diagnostician to seek treatment for erythromelalgia and see if this is causing the problem or if it's a pots thing. Erythromelalgia (which I do have) has much in common with my overheating but it's symptoms are a little different. However, with quite a bit of research I've done lately on it, although I don't fit the 'strict' feet and hands only description of erythromelalagia when I dug a little deeper I found it effects other parts of the body. There is a bit of info on the net -- here and there -- that connects erythromelalgia to mast cell problems and pots in some people. I've just started to come across it -- 8 years ago when I was diagnosed with both erythromelalgia and POTS and problems with histamine release, there was nothing on the net that I could find that connected them all. I couldn't find anyone that had all three problems. And I stopped searching for connections. In my head I needed there to be a connection. I could not accept that I could have all three problems at the same time that started around the same time.

Anyway, I know enough to be confused. LOL

So it's time I went back to see my POTS doc and talk more about erythromelalgia, pots, too much histamine release . Rather than just talking strictly 'pots' with him and thinking I needed to talk 'skin problems' with my allergist. I did bring it up with my neurologist but he just shrugged and told me it was probably a nerve problem and gave me a script for gabapentin. Which was actually one of the treatments for erythromelalgia (as well as other nerve pains) but makes my severe constipation -- a pots problem -- so much worse. GRRR.

Thanks again,

blue

[blueskies]

Blue, You have described exactly what has been going on with me lately. I used to be cold all the time, but now I am hot all the time and every night I wake up feeling like I am cooking from the inside. When this happens, the veins in my hands and feet become bright blue like I drew them on with a blue Sharpie (I am fair skinned). I keep my house at a constant 69 degrees F, so I know it is just me. I am between doctors right now and I don't know what is going on exactly but I suspect that it is due to vasodilation. I say this because when I take my Midodrine I vasoconstrict and feel cold, but I was instructed not to take the Midodrine at night due to the possibility of supine hypertension, and that is when I am the hottest. This is just a guess though. The only thing I have found that helps is to rinse my feet and hands off with cold water (cold showers wake me up too much), or hold an ice pack against my wrists and palms. I also drink a lot of water before going back to bed. I hope you find some answers.

Hi again Kharrina,

At one point, about 7 years ago I was taking an ergotamine/diphenhydramine mix for migraine relief. Ergotamine is a strong vasoconstrictor. It helped me abort my migraines and also, looking back, I was not having as many heat problems, that I can remember, for the whole time I was on it. And when I did overheat I could trace the reason why. However, due to my age, I was 51, and the fact that ergotamine is a dangerous drug/a very 'dirty' one, as 'they' say, my pots specialist and my pain specialist took me off it and put me onto low dose opiates while I was in hospital with pots problems for a few weeks -- the combination of coming off a vasoconstrictor and taking opiates, that are mast cell degranulators (not sure if that's exactly right but forgotten their affect on histamine release)..... well, when I got out of hospital and away from the hospital's marvellous air conditioning the first thing I noticed was I was really, really warm (although not as 'warm' as now). I put it down to the low dose opiate regime and the beginnings of summer, but now think the ergotamine, being a vasoconstrictor, was definately keeping me cooler and stopping me from flushing as much. As an aside, the diphenhydramine ( I think this might be Benedryl, that U.S. members talk about) was helping with my hives etc, which also meant it was helping with heat problems to a lesser degree.

Long story short, yep, I can see how a vasoconstrictor could help with this problem. It seemed to for me.

blue

[Mermaid]

I definitely have temperature regulation problems, seem to feel much too cold when it's cold and much too hot when it's warm. At night, sleeping I get too warm and wake up a blotchy, itchy, vasodilated mess, ears, nose, hands, feet, legs, everything is unreasonably hot. It takes me a couple of hours to get anywhere near normal in the mornings. I'm in the UK and so it's not hot, hasn't been so far anyway).

Khaarina, I can see my veins too, green in my case as I'm darker skinned, looks like someone has drawn them on all over. In my hands and arms they bulge out horribly. This is all since POTs started. It's really weird, I try not to look and they do disappear when I'm cooler. I knows this is normal physiology but absolutely not to this extreme extent.

Blue, we've spoken about erythromelalgia, although diagnosed with it, I'm still not sure it's what I have. But something is going on, it can look like erythromelalgia but I don't have the extreme pain that others with the seem to have.

[TCP]

Yes very hot and night and this got worse recently after the one lignocaine infusion I had for pain. I had a bad night last night and ended up with a sheet on and nothing else and I still got hot. I kicked that off and then woke up really cold and within seconds of waking up I got really hot again. I have noted the nights when my bowel is filling up I have more restlessness and heat. I think I may use a suppository before going to bed. I know it sounds horrible but I have noticed that my GI plays a very big part in the nervous system.

Yes the veins really bulge and look awful. My feet and hands look bluey green at times and I agree barb10 about them looking as though they have been drawn on. If I raise my arms they disappear temporarily.

[blueskies]

Hi barb,

I have learned from a forum that erythromelagia patients don't all have those extreme levels of pain. Levels vary between people.

TCP, i had a very similar night last night. And it's winter in Australia It has become like no season Iis much of a friend anymore. Very frustrating.

written from my new tablet so please excuse typos,

blue

[LastUnicornLady]

I have a terrible time with temperature regulation- in both directions. My family likes to say there is a "dotted line" for me between too hot and too cold. I bounce so quickly between the two, and it's hard for me to actually stay in the small zone of comfort. Especially at night. I've started waking up at 5 o'clock in the morning absolutely burning up... Still haven't figured out what to do about it. I'll have to try some of the tips suggested here!

[DeGenesis]

I hate feeling cold, and I get cold easily, but it's much better in terms of symptom burden than being hot.