Does anyone have sweating or temperature regulation problems

Just another question from me. Along with all of my other symptoms, I also seem to have no body temperature control. This is not the hot flush that goes with menopause (I know that one only too well unfortunately) This is out of control heat when I am having heart irregularity and I break out into a lather of sweat. I’m also finding that on waking, as soon as I open my eyes, I break into a lather of sweat also. This is happening even when I am having a sleep in the middle of the day (which sadly is becoming more and more necessary everyday with the debilitating fatigue)
I know this is not necessarily associated to ES per se but wanted to ask if anyone is having anything similar. My gut feeling tells me it is to do with nerve involvement but as I said, I just wondered if anyone had any input. Cheers. Love and light. Anita

I definitely have this I have always gotten so hot that I could not cool off.

Yes, I have these symptoms. I was then diagnosed with fibromyalgia. But in researching my symptoms I found that the vagus nerve controls a lot of major bodily functions. All of my symptoms revolve around those bodily functions. The vagus nerve begins right where the bones also are located. I believe, and I have been to a dr, yet, to confirm this, but I believe the bones damaged that nerve before I could get diagnosed with ES!!! So, research the vagus nerve and what it controls and see if you have the symptoms described, in other parts of YOUR body.

It isn't as simple as we think! Some of my symptoms are exactly what you describe.

Looking for a neurologist or endocrinologist to listen to me. The first neurologist I saw had the nerve (no pun intended) to say "I don't believe you even had ES!!! " Well, I guess he didn't see the 3 1/2 inch bones the surgeon pulled out of my neck/throat!!! Needless to say, that was the last time I went to him!

~~~ Tiger

Yes, my wife has very similar experiences and, as you note, it's different from the 'hotflashes' of menopause. I'll be comfortable with our room temperature while she is suddenly sweating profusely. Usually onset seems sudden & with no particular trigger, but sometimes she experiences the sweat in association with peaks of pain...these she'll descibe as "pain sweat". She ensures that she drinks lots of water to stay hydrated.

Also, you mentionned in an earlier post that you experience overwhelming fatigue. My wife experiences this as well, sometimes sleeping more hours in the day than she is awake. She hasn't been able to work for 3 years, is currently on a long wait list for styloid surgery, & feels like her life is on hold while she sits/lays exhausted. Her tiredness is not helped by the fact that she is trying to wean herself onto gabapentin [hoping for some pain relief while awaiting surgery]...she finds that its sedative effect intensifies her fatigue++. I'm sure the inevitable depression that accompanies enduring pain & disability isn't helping this either.

Good luck with your surgery!!

David

The vagus nerve is so ignored. It is a vital aspect that drs. just don't include. Seems drs. are still so compartmentalized, they are limited to time, etc., but there PA's should be helping here. My internalist's PA figured out what very serious condition I was suffering for - he gave more time, asked questions and observed. I know some of my drs. in the past hated me because I would not be pushed aside, especially as I grew older. I too have fibromyalgia. I just had surgery for bilateral Superior Canal Dehiscence. That had masked my ES. Both are directly connected to the vagus nerve behavior. I just wish there was a truly dedicated research facility where people could send their histories and diagnoses. We just keep trudging on....

I only have temp issues with my ears and neck. My ears get really hot when something is covering them or my sweatshirt is to close. I also have major pain after walking outside when it's really cold and my ears are not covered. No body temp issues tho..

Yes. It is not like the 'hot flash' body thing. I also have Reynaud's, which I believe is connected. There just is no way all of our symptoms are individual issues. If I keep my neck wrapped and my ears covered, as well as my chest, it really matters. However, I cannot have anything tight or constricting around my neck, as I almost panic. My ears have gotten so hot, it is like they are burning.

I have issues with temp changes. I feel like I am in overdrive. It has to be our vagus nerve.

I agree Amy. I also go fron hot to cold very quickly. It must be vagus nerve involvement as i also have hypereflexivity and trembling sensation usually upon waking quickly. My fight or flight response is so scary my husband has gotten to be very careful when approaching. All of this is regulated by the vagus nerve

not sure if it matches or not.

i have had problems with not being able to tolerate the heat, walk outside and just get drenched with sweat, and the winter cold was terrible. just could not keep warm.

had both styloids taken out this last summer.

i did not spend much time outside this summer post op so i dont know if the sweating has improved. the cold has been much easier to take this winter, and it has been really cold

hope being able to tolerate the cold is a sign that the problems with the heat is going to be better too....time will tell

i have noticed that "life" in general has improved greatly post op

with the improvement i have noticed, after chasing the symptoms since 1999,

if you have problems enough to have finally found eagles to be a possible cause,

keep pushing until you can get someone to get those things removed as soon as possible.

Great. Where is the dr. you used located? Sounds like you are on the road to recovery. Keep us posted.



wadams said:

I agree Amy. I also go fron hot to cold very quickly. It must be vagus nerve involvement as i also have hypereflexivity and trembling sensation usually upon waking quickly. My fight or flight response is so scary my husband has gotten to be very careful when approaching. All of this is regulated by the vagus nerve

I forget how to put replies in.

These comments give me some hope. I feel like I am always in fight or flight mode. I wonder if people who have ADHD, etc., might have some problem with their stylos and for sure their vagus nerve. While learning about my SCDS and experiencing the symptoms, I found that if I had not been repaired, I could very well have been diagnosed with a psychosis; sufferers have also discussed feeling like death would have been a welcome relief. I wonder how many people live terrible lives not being diagnosed....

Make sure to have thyroid and Parathyroid tests done. Sweating, shaking, debilitating fatique, anxiety, irtitability and high calcium levels are common with a hyperparathyroid gland(you have 4) and some of same symptoms with hyperthyroidism.

Yes…I automatically sleep with ice packs now as it gets so bad…



Lifelongeagle said:

I definitely have this I have always gotten so hot that I could not cool off.

I also have raynauds …mainly in my right hand. I have anti phospholipid antibody syndrome and have had that for about 16 years and in my case, it is thought to be associated to that. Most of my other symptoms with that are pretty clear cut and I have become quite used to dealing with them. Amazing to say that over the years just how many doctors have put everything to do with the ES down to the APLS when there is no symptom association. I even had one doctor say after I had to tell him what APLS was…that my symptoms of ES were that…when I asked him what if fact were the symptoms of APLS (which of course I was well aware of as I live with it) he said oh I don’t really know but I’m sure it is those symptoms you describe (NOT) and if it isn’t listed as those then maybe there hasn’t been enough of those symptoms by sufferers to document it…needless to say I never went back to him even for a common cold.



Ladygw said:

Yes. It is not like the ‘hot flash’ body thing. I also have Reynaud’s, which I believe is connected. There just is no way all of our symptoms are individual issues. If I keep my neck wrapped and my ears covered, as well as my chest, it really matters. However, I cannot have anything tight or constricting around my neck, as I almost panic. My ears have gotten so hot, it is like they are burning.

I hope one day it is taken more seriously when patients present. Yes it is a rare disease and it takes time for these things to be out there for common understanding…but the way we all seem to have been dismissed by many doctors really is very disturbing. I wonder if the percentage of people that have this is in fact much higher than the literature would suggest.



Ladygw said:

I forget how to put replies in.

These comments give me some hope. I feel like I am always in fight or flight mode. I wonder if people who have ADHD, etc., might have some problem with their stylos and for sure their vagus nerve. While learning about my SCDS and experiencing the symptoms, I found that if I had not been repaired, I could very well have been diagnosed with a psychosis; sufferers have also discussed feeling like death would have been a welcome relief. I wonder how many people live terrible lives not being diagnosed…

I am going in for surgery on Monday the 20th January to have the left one removed first.



trooper dude said:

not sure if it matches or not.

i have had problems with not being able to tolerate the heat, walk outside and just get drenched with sweat, and the winter cold was terrible. just could not keep warm.

had both styloids taken out this last summer.

i did not spend much time outside this summer post op so i dont know if the sweating has improved. the cold has been much easier to take this winter, and it has been really cold

hope being able to tolerate the cold is a sign that the problems with the heat is going to be better too…time will tell

i have noticed that “life” in general has improved greatly post op

with the improvement i have noticed, after chasing the symptoms since 1999,

if you have problems enough to have finally found eagles to be a possible cause,

keep pushing until you can get someone to get those things removed as soon as possible.

I hope so…I seriously am at a point where I can’t take it anymore…I pray that my surgery has a positive impact. My doctor is an ENT head and neck surgeon by the name of Dr. Andrew Salmon here in NSW AUSTRALIA.



Ladygw said:

Great. Where is the dr. you used located? Sounds like you are on the road to recovery. Keep us posted.

I did get those checked out plus a cat scan of the thyroid…apparently all clear so I guess I might have some more of an idea if it is related to the ES post operative if it goes away. I sure hope it does …for me and some hope for those that also have issues wit it that haven’t had surgery yet.


emma said:

Make sure to have thyroid and Parathyroid tests done. Sweating, shaking, debilitating fatique, anxiety, irtitability and high calcium levels are common with a hyperparathyroid gland(you have 4) and some of same symptoms with hyperthyroidism.