Extreme heat intolerance - I crashed hard - can pregabalin be responsible for this?

[MartinK]

Hi all, from the beginning of mine ME/CFS I have heat intolerance.
At first it was mild, but the last year it has gotten much worse (, as has my whole condition - Im severe, bedbound.

But last "experience" shocked me - I was transported by ambulance to doctor visit and the air conditioning didn't work there. It was hot there. However, it only took 15 minutes. No physical activity - nothing I should get a PEM for.

Next day I crashed extremely hard, nearly collapse. Such muscle pain that I didn't even want to move on the bed. As if my nervous system wanted to kill me. Too painful muscles, too painful inflammation inside. I'm scared of it!

Usually, Pregabalin (Lyrica) helps me with muscle pain, which usually also alleviates and shortens my PEM.
I take it regularly 300 mg daily, because I also need it for sleep.

But is it possible that Pregebalin would do something negative with his nerves about heat intolerance?

I am one of those who have no psychological symptoms, only physical. No brain fog or things like that.

- Im not a well knowledgeable about GABA/Glutamate, can here something play some roles in heat intoleration?
- And what about BDNF? Can it have any effect?

II always thought that my main problem stemmed from the immune system and possible Lyme/EBV infections, but there seems to be something very wrong with my nervous system...nerve-muscle connection. However, inflammatory markers are OK and no neurologist has ever found anything ... crazy.

Some ideas? It is a really desperate situation. I have experienced so much pain in recent days that it cannot be compared to ordinary PEM.

Maybe @YippeeKi YOW !! know something?

 

[YippeeKi YOW !!]

What a terrifying experience, aside from being painful !!!

I've always been heat-intolerant, so to a very small degree, I can feel your pain, and I wish you'd been able to post this yesterday, when I was firing on at least 3 of my 8 cylinders.

I'm less functional brain-wise today, so I'll come back tomorrow, hopefully in better shape, but for now, a couple of things ....

But is it possible that Pregebalin would do something negative with his nerves about heat intolerance?

Interestingly, pregabalin was initially prescribed for women going thru severe hot flashes. I know that's not particularly helpful to you right now, but there's possibly a connection between it's early use and what you're going thru now.

I'm sort of leaving notes for myself when I come back tomorrow, and hoping that they'll also give you some sense of hope ....

How long have you been taking pregabalin, ad have you always taken it at the same dosage level?

What other stuff, including vits, herbs, OTC, etc, do you take that might offer a clue?

- Im not a well knowledgeable about GABA/Glutamate, can here something play some roles in heat intoleration?

Yes, I think there can be. I know that when I went thru extreme GABA/glut imbalance and everything that went with that, I did have some pretty bad sense of overheating, which I attributed to the stress of the wracking panic attacks that were the first sign that something was badly wrong....

- And what about BDNF? Can it have any effect?

Brain derived neurotrophic factor plays an important role in neuronal survival and growth. It's a, possibly THE, key molecule involved in the actual plastic changes related mostly to learning and memory (which is also what glutamate's involved in, so if it's any consolation, your instincts and assumptions are good). It contributes to and supports the survival of existing neurons as well as synaptogenesis, the development of new connections ....

So yeah, BDNF could have a slinky hand in all this.

SHite !!!! I wish I had a better brain today. But dont despair .... you've started unraveling the mystery already, and I'm sure other members will be along shortly with their input, and I promise, I'll be back either later today or early tomorrow AM, hopefully with better cog and a faster brain.

In the meantime, and mostly because I know it wont do any damage and mght actually help, try what helped me .... small amounts of magnesium (I used mag glycinate, you can use what works best for you, except for mag citrate and mag oxide, both of which have unpleasant bowel effects) with Vit C and very small amounts of melatonin. I used 50 mgs of mag gly every 30-45 minutes when I was at my worst, with about 250-500 mgs of Vit C, and about 0.25 mgs of melatonin every 4th or 5th dose. It took a while to work, but I could sense a change almost immediately. All of them work on neurotransmiters, glutamate overload, the NMDA recptor, ad the CNS .... it's a start ....

For now, that's the best I can do @MartinK .... I wish I had more, or something more certain, you must be in agony .... DONT GIVE UP !!!!

 

[MartinK]

Thank you so much @YippeeKi YOW !! for you amazing support.
Hope you are better today ;-)

How long have you been taking pregabalin, ad have you always taken it at the same dosage level?

About a year. He saved me from many conditions, and in my opinion it is currently the only drug that partially helps me to be at least a little functional. Before Pregabalin I have 6-7 days long PEMs and serious insomnia (when I go sleep without Lyrica, I feel mess in my head, with the Lyrica there is calm... that's the "wired but tired" meaning?) (I think this is proof that I have a serious problem with GABA/glutamate?!).

Last 6 months Im on 150 + 150 mg daily. Only if I need to do some movement - like a shower, I take 450 mg.
(btw. about shower - here I also have to be careful that it is not warm, otherwise I would crash)

What other stuff, including vits, herbs, OTC, etc, do you take that might offer a clue?

I don't really use anything that I think could make my situation worse like that. Some time I had big benefits from benzos, but I reduced it because of the risks of addictiveness. Anyway, it reduced my intolerance to heat for a while and improved my energy. It was not Ativan but Alprazolam in my case.

If I'm not mistaken, this again points to some serious problems with neurotransmitters / NMDA receptors ...things like that!

I use few herbs antiviral herbs, basic vitamin / mineral combo, NAC, lot of gut health supplements, Inositol IP6 for NK Cells support, low dose Mirtazapine... and hydroxychloroquine for stopping "polyclonal immune system activation" after covid vaccine booster.

So yeah, BDNF could have a slinky hand in all this.

if I understand correctly, trying to influence BDNF can be quite dangerous right? Especially when I don't know the level in my body.

I used 50 mgs of mag gly every 30-45 minutes when I was at my worst, with about 250-500 mgs of Vit C, and about 0.25 mgs of melatonin every 4th or 5th dose. It took a while to work, but I could sense a change almost immediately.

yeah, thx! I found your post and I immediately started following it.
I have Magnesium N-Acetyltaurinate about which I read a lot of good things.

I'm really looking forward to discussing this more... I need to solve this problem, because this episode seemed almost life-threatening to me.
Insanely...

I don't know if what I'm describing actually indicates excitotoxicity - can be a manifestation of excitotoxicity heat intolerance?

btw. I know many people with MCAS have heat intolerance - I dont have MCAS, or definitely not primary.
My whole body inflammation feeling is so huge that I can't lie on my back for long because it burns me under them - I have to turn around and cool down from time to time. Like a chicken on the grill !! lol

thank you and thanks anyone who joins this discussion.

Martin

 

[hmnr asg]

hi there,
I also take pregabalin and I also have heat intolerance. I dont really think they are related at all. I think many CFS patients have serious problems with heat and it can cause a major crash. I have also crashed just from heat. I keep our apartment very cold.
I had heat intolerance before pregabalin. And vast majority of CFS folks also have it (and mostly they dont take pregabalin). So, pretty confident its not related.

Pregabalin has been very helpful for me. For sleep and for PEM.
ps CFS with no brain fog? thats sort of odd, I would gladly switch places with you. Brain fog is the worst part of this whole thing (not being able to read or work at my job).

 

[YippeeKi YOW !!]

Hope you are better today ;-)

Sadly, I'm a lttle foggier even than yesterday, but I still have some of what pass for thoughts regarding your extreme heat reactions. It's just going to be a little at a time.

It was not Ativan but Alprazolam in my case.

The only difference between Xanax (what you were taing) and Ativan is that Ativan allegedly leaves your system a little faster, which they claim reduces it's potential for addiction. This is, to put it politely, total bullshit.

They're both strong and dangerous benzos ....

If I'm not mistaken, this again points to some serious problems with neurotransmitters / NMDA receptors ...things like that!

I agree. There's been some fairly serious dysregulation, which could be causing your heat issues.

if I understand correctly, trying to influence BDNF can be quite dangerous right? Especially when I don't know the level in my body.

I totally agree. Finding out how to deal with things that may be affecting your BDNF is a safer way to go.

One of the less-known aspects of BDNF is that it seems to strengthen glutaminergic (excitotoxic) synapses, and simultaneously WEAKEN GABAergic synapses. This, combined with the effects of the Xanax (even tho I dont think that you're taking it right now, the changes it effected on your brain and CNS dont leave your system along with the last traces of the drug) and the mirtazapine could hold an interesting key to your reactions.

I have Magnesium N-Acetyltaurinate about which I read a lot of good things.

You say that you've read a lot of positive things about it, but more importantly, what are YOUR reactions to it?

I don't know if what I'm describing actually indicates excitotoxicity - can be a manifestation of excitotoxicity heat intolerance?

Keeping in mind that I'm ABSOLUTELY not a medical professional of any kind, my guess is that excitotoxicity is definitely one of the issues here. Whether or not extreme heat intolerance is one of the effects of that is hard to say. But the fact is that none of us have exactly text-book reactions to things, so I wouldn't rule it out, and absent any other hypothesis, it's a good place to start.

 

[YippeeKi YOW !!]

ps CFS with no brain fog? thats sort of odd, I would gladly switch places with you. Brain fog is the worst part of this whole thing (not being able to read or work at my job).

Along with its many frustrations, one of the most baffling is the way ME affects each patient. Some present with little to no brain fog, some present with little to no serious life-altering fatigue. SOme have little to no POTs. It's just a glorious grab-bag of bafflements and consternations ....

 

[hmnr asg]

some present with little to no serious life-altering fatigue

is that even CFS then? if it doesn't alter your life how can it be called a disorder then?

I have this issue constantly on the CFS subreddit that is full of young people and you often read posts from teenagers that claim to have cfs and the post usually goes like this: "I have cfs and i feel tired after i run marathons" lol. And when you push back against their self proclaimed diagnosis you get attacked by others with: "CFS IS A SPECTRUM!".

That's like calling 911 and saying there is a fire at your house and when firemen show up you show them a lit up match and say "FIRE IS A SPECTRUM!".
Not saying op is such a person, but just saying a disorder isn't really a disorder unless it interferes with your life somehow.

edit: lets not hijack this post by arguing about the semantics of what a disorder is. OP has a legitimate concern and me and @YippeeKi YOW !! should just discuss this privately.

 

[YippeeKi YOW !!]

is that even CFS then? if it doesn't alter your life how can it be called a disorder then?

Just because a patient dont express ONE aspect of ME doesn't negate the others that they do, which also affect their lives negatively.

And while CFS is one aspect of ME, it's not the only one. It's why a lot of us objec to the CFS/ME designation that many have given ME ....

That's like calling 911 and saying there is a fire at your house and when firemen show up you show them a lit up match and say "FIRE IS A SPECTRUM!".

No, it's more like saying there's a fire at your house and when firemen show up, you indicate that it's in every room but the kitchen.

Not saying op is such a person, but just saying a disorder isn't really a disorder unless it interferes with your life somehow.

I would hope that you wouldn't try to diagnose someone based on the absence of ONE of the key factors of a illness, while ignoring all of the others.

me and @YippeeKi YOW !! should just discuss this privately.

I have no interest in a private discussion, but thank you for the invite.

 

[hapl808]

This is the problem with all syndrome diagnoses. They're not 'real' diagnoses in my opinion, because it's not scientific. It's an arbitrary series of symptoms organized into a bucket.

 

[lenora]

HI @Martin,

I take lyrica, have for multiple years and long before I started lyrica I had severe heat related problems. I mean in a few seconds I can go to the exploding volcanic state. Then, just as suddenly, I'm freezing.

Granted, I'm 75 yrs. old, female, but in some form or another this has been a problem my entire life. True, I live in a hot climate now, but respect not just it but my body immensely. Electrolyte imbalances can cause major problems....please check them out. I've been OK for about 2 yrs. ago (electrolyte imbalances), but I'll go to my grave with theis heat/cold problem. Gloves in winter, on/off constantly, the same with a sweater and blankets. I use/wear only natural fibers b/c synthetic ones make it all so much more unbearable.

Air conditioning can bring on a cold spell, and fans are best. However, if my temp. goes up even my husband will take steps to do something about it. It's exhuasting, isn't it?

So no, I don't think it's the lyrica at all.....yes, some sweating may increase, but nothing like you and I both seem to have fallen victims to. I have to wear long-sleeved lightweight cotton gowns in the summer, and sleeves are constantly up and down.

I can't say that it is better or worse than years ago....just that I now know that I have to be in charge of my electrolytes. Good luck in dealing with this. I never go anywhere without a sweater or shawl at the very least. I believe this is much more common than is known.

Is it PEM....well, not part of the description but is definitely neuropathy of some sort and in my case comes from problems in the brainstem.

A diagnosis for ME is important and under that we have all sorts of different symptoms. Like you say, it's rather useless to argue what's real and what isn't.

Take yourself off to a GOOD neurologist or rheumatologist for a proper diagnosis. (Not you directly, but everyone who wonders.) Tell the young kids who are worried to do the same. A proper diagnosis of illness is a must for any belief from others. Also I've found that symptoms can change over the years. True a lot of years, so nothing is set in stone. Yours, Lenora.

 

[MartinK]

@hmnr asg hey, we seem to be very similar in this! Without Pregabalin I have really hard insomnia and same with PEM as you...
How long you take it? Dose?
btw. To see more connections - in what condition you are please, and what was your onset? EBV? Lyme? Or some weird flu?

Yes, Im really without brain fog (I work out of bed a few hours a week as a copywriter)! But my body is total trash... so much pain, inflammation and suffering.

Sadly, I'm a lttle foggier even than yesterday, but I still have some of what pass for thoughts regarding your extreme heat reactions. It's just going to be a little at a time.

@YippeeKi YOW !! sorry to hear that!
Maybe for me these benzos drugs stopped working overall, who knows. But I don't want to try again, I don't want to risk addiction.

One of the less-known aspects of BDNF is that it seems to strengthen glutaminergic (excitotoxic) synapses, and simultaneously WEAKEN GABAergic synapses. This, combined with the effects of the Xanax (even tho I dont think that you're taking it right now, the changes it effected on your brain and CNS dont leave your system along with the last traces of the drug) and the mirtazapine could hold an interesting key to your reactions.

My english is not great and translator is not 100%, but you think, combination of Xanax and Mirtazapine can cause this heat intolerance?
I had really small doses. Mirtazapine only 10 mg before bed and benzos are much time out of my system.

You say that you've read a lot of positive things about it, but more importantly, what are YOUR reactions to it?

I did high doses without effect, but now Im trying your approach with smaller doses with Vit C during whole day. Will see!

I also bought Memantine and Amantadine yesterday - if I understand correctly, it has a chance to do some good effect for me.
Any experiences with this drugs?

I also want to be careful of all nootropics because it could increase BDNF (I think I have high BDNF, but not tested yet).

What else does it occur to me:

- possible damaged myelin? I found: "If your myelin is damaged, your body’s nerve signals become interrupted. This condition can lead to heat intolerance." (common in MS)

- hypothalamus dysfunction? This part of the brain regulates body’s temperature - mine is normal, I only have constantly cold feet! Can it mean anything?

 

[Alvin2]

I have heat intolerance from ME and i would get spontaneous overheating at night when i missed a dose of Pregabalin.
So yes its possible but its also an ME symptom so hard to say.

 

[YippeeKi YOW !!]

My english is not great and translator is not 100%, but you think, combination of Xanax and Mirtazapine can cause this heat intolerance?

I dont know. But it's not a great combo, generally speaking .... the more things you take that fiddle with your brain and CNS, the more exponentially the potential for weird and damaging effects.

Whatever is causing your heat intolerance, it's quite possible that it's a passing effect, as so many ME issues can be,

- possible damaged myelin? I found: "If your myelin is damaged, your body’s nerve signals become interrupted. This condition can lead to heat intolerance." (common in MS)

Myelin sheathing can be damaged by a wide range of autoimmune illnesses. My dad had autoimmune encephalitis, which was gradually eating away at his myelin sheathing. He was able to arrest it with the help of an army of doctors on two continents.

There's also lupus erythematosus, Behcet's disease, Sjoegren's syndrome, systemic sclerosis, and a host of others.

But I agree with @Alvin2 ... it does seem to be a not uncommon incidence in ME, as are what appear to be GABA/glutamate imbalance issues ....

- hypothalamus dysfunction? This part of the brain regulates body’s temperature - mine is normal, I only have constantly cold feet! Can it mean anything?

The hypothalamus occurred to me immediately, due to its role in the regulation of body temp, but I cant get my brain to connect the dots right now....

 

[hmnr asg]

@hmnr asg hey, we seem to be very similar in this! Without Pregabalin I have really hard insomnia and same with PEM as you...
How long you take it? Dose?
btw. To see more connections - in what condition you are please, and what was your onset? EBV? Lyme? Or some weird flu?

Yes, Im really without brain fog (I work out of bed a few hours a week as a copywriter)! But my body is total trash... so much pain, inflammation and suffering.

Lyrica: I take around 200mg but I play around with the dose depending on my insomnia. Been taking it for five years now.

By the way, I have systematic demyelination which have caused a number of neurological problems.
I got sick 13 years ago, but about 6 years ago i started having severe neurological symptoms. Very similar to MS: vision problem, weakness in hands and legs, urinary urgency, sexual dysfunction (i was around 37 at the time, so very unusual). I also ended up with a nerve pain disorder in my face: Trigeminal Neuralgia. So I was put on lyrica for it. The lyrica doesnt help the pain much but it helps with sleep! I also have Restless Leg Syndrome, so it helps with that as well. I take around 200mg a day, but i go up as needed if sleep is more difficult (up to 300 mg).

As for the onset of my illess: it was 13 years ago. I was a healthy and active person. I was 29 years old. I went to a bar one night with friends and had a burger which caused upset stomach. Woke up the next day with abdominal pain which lasted 2 weeks. I was also having issues passing stool and I was very gassy. After two weeks I crashed (first crash) during yoga class. Woke up the next day and could barely move and that was the beginning of my CFS. First year was hell but after the first year I got better and entered the mild phase of my cfs. Five years ago I got much, MUCH worse due to too much mental exertion from my job. My symptoms are classic ME, but my PEM worse when I go to loud, stimulating places. For example, if I go with friends to a loud restaurant and there is loud noise and music I will crash immediately. Mental exertion is also really bad for me, same as heat. Physical exertion also causes PEM but less severe than the other two.

 

[MartinK]

@Alvin2 oh, so it works for you too? Are you trying to solve heat intolerance with any other drugs? How serious are you?

@YippeeKi YOW !! I hope you're finally better today.
benzos + mirtazapine - I know it can cause CNS depression, but I think only at high doses. I made only small doses all the time. I tried to watch it. Fortunately, no addiction for me.

Please, since your father was dealing with these problems, can you tell me, how he came to his diagnosis? Do you remember it?
I ask because I wonder where to turn...how to get proper diagnosis for this "heat intolerance" severe problem.

Folks, probably most important question - what blood test panel would you have done?
I have tons of different examinations, tons of papers with results, BUT.... maybe I missed something.

The hypothalamus occurred to me immediately, due to its role in the regulation of body temp, but I cant get my brain to connect the dots right now....

Oh, look forward @YippeeKi YOW !! if you remember more...hold my thumbs!

@hmnr asg thank you for explanation of your condition and onset.
It's interesting how much different we all are! I love loud music and thinking usually doesn't bother me.
I just noticed that when I really think very intensely, it slightly worsens my heat intolerance - there must be a problem in the brain !!!
some imbalance that makes many of us more sick...

 

[Alvin2]

@Alvin2 oh, so it works for you too? Are you trying to solve heat intolerance with any other drugs? How serious are you?

It did not work for me, it was an experiment for a few months.
I took it for cognitive issues, but it had no effect on me except the overheating issue if i missed an evening dose.

I have not found anything that helps heat intolerance and i am mostly housebound.

 

[MartinK]

Hi all, I tried to read many documents/studies that might help uncover the problem.
I came to the conclusion my heat intolerance problem is probably something like "autoimmune dysautonomia".

I am mainly looking for answers to these questions:
- autoantibodies? (can bc007 help?)
- excitotoxicity?
- gaba/glutamate or any more neurotransmitter problem? (I will do more Mg + Vit C...maybe better IV Saline + MgSO4 + Vit C?)
- myelin disorders? (I bought ARA290 yesterday)

@YippeeKi YOW !! your brain fog is finally better now? ;-) I look forward if our discussion will continue.

 

[YippeeKi YOW !!]

@YippeeKi YOW !! your brain fog is finally better now? ;-

Not so you'd notice. This seems to be another down-spike, after just coming out of one. Two decent days, and off we go again ....

Lemme know which aspects of our discussion interest you, and if I have more info, I'll do my best to post it .... sorry for the lag, but I think you know how it goes with ME ...

 

[Booble]

is that even CFS then? if it doesn't alter your life how can it be called a disorder then?

I have this issue constantly on the CFS subreddit that is full of young people and you often read posts from teenagers that claim to have cfs and the post usually goes like this: "I have cfs and i feel tired after i run marathons" lol. And when you push back against their self proclaimed diagnosis you get attacked by others with: "CFS IS A SPECTRUM!".

That's like calling 911 and saying there is a fire at your house and when firemen show up you show them a lit up match and say "FIRE IS A SPECTRUM!".
Not saying op is such a person, but just saying a disorder isn't really a disorder unless it interferes with your life somehow.

edit: lets not hijack this post by arguing about the semantics of what a disorder is. OP has a legitimate concern and me and @YippeeKi YOW !! should just discuss this privately.

That's a problem with Reddit, young people and social media, not CFS.
The young Redditors don't just do that with CFS ("I ran a marathon and I was tired!") but with every single f'n thing. It's annoying to the utmost.
But that doesn't negate the whole syndrome and how it impacts people. We don't really know what it is but let's say for example it's related to inflammation. And for some people the inflammation inflames an area that causes heavy duty daily fatigue -- -and in another people the inflammation inflames another area that causes symptom x an y and only heavy fatigue under certain situations like 2 days post exertion (PEM).

I hear what you are saying though. I sometimes feel like a CFS/ME fraud and I don't really define myself that way. I have POTS, I have MCAS, heat/cold tolerance disregulation, I have 2-days post exertion fatigue, I have deep fatigue in other circumstances, and a variety of things. CFS/ME? Beats me!
But regardless, I've learned a lot from the CFS/ME community and hopefully from time to time I share a few words that might resonate or comfort someone.
With such an confusing syndrome, maybe it doesn't matter if someone is "really CFS/ME" or not?

But yes, I hear you on those reddit kids. So annoying.

 

[Booble]

Hi all, I tried to read many documents/studies that might help uncover the problem.
I came to the conclusion my heat intolerance problem is probably something like "autoimmune dysautonomia".

I am mainly looking for answers to these questions:
- autoantibodies? (can bc007 help?)
- excitotoxicity?
- gaba/glutamate or any more neurotransmitter problem? (I will do more Mg + Vit C...maybe better IV Saline + MgSO4 + Vit C?)
- myelin disorders? (I bought ARA290 yesterday)

@YippeeKi YOW !! your brain fog is finally better now? ;-) I look forward if our discussion will continue.

I've always thought that heat intolerance was related to the POTS aspect.
Always have had heat intolerance, always will.
I've never done anything to try and "cure" --
I prepare for it as best as I can - carry water, put cold paper towels or wet towels around my neck, be near a pool that I can slip into. Make sure I eat before hand. And not go out on hot humid mornings since morning for me is a nightmare vs. late afternoon and early evening.
Aside from staying hydrated, salted and keeping blood sugar up, I'd be surprised if there is a cure with any supplements.