Temperature Intolerance ideas?

Hi smart people,

Well, the warmer weather is here making it harder to stay within my 3 degree comfort zone.

I'm pretty much relegated to being mostly horizontal as I get sweats when I'm upright, sometimes even when it's quite cold.

Metoprolol has controlled my POTS but doesn't seem to have much effect on my temp. intolerance. Doses above my current level (25 mg) slow my resting heart rate too much so I need an alternative or something to try in conjunction with it.

Any non-medicinal tips are also welcome.

Thanks,
Otis

Hi Otis

I can tell you what works for me - to an extent.


Generally, to try to avoid overheating I run my wrists under cold water or drape something damp over the back of my neck.

When I get so overheated to the point of approaching PEM I have found that acetylcsyteine (NAC) in soluble form from the local pharmacy (Mucomyst) can help. Its cheap and appears to be safe.

Failing that the only thing that reduces my core temperature is total immersion in cool water. The difference is remarkable and can last a number of hours.

Heat intolerance is also a common symptom of MS and some of the MS forum members report a complete absence of heat intolerance after the CCSVI vascular operation (a little drastic for my taste). Perhaps vasodilators might help?


Apart from this I can only commiserate.

Cheers

Marco

Thanks for the input Marco!

Sent from my ADR6400L using Tapatalk

Check your thyroid and get treatment for that if needed. Get a complete panel, not just TSH. So that would be: TSH, free T3, free T4, and thyroid antibodies. This treatment helped me a lot. I had to stay at 74F until I got this fixed. Now I can tolerate into the 80's before I start feeling sick.

If outdoors in the heat, i use a cool neck scarf. It's filled with crystals. You soak it in water and the crystals swell up. This will keep the scarf cool and damp for hours. You tie it around your neck and it really helps to keep you cool.

If it's 90F or above, I don't go out.

Hi Otis,

I tried PM'ing you. Your inbox appears to be full.

Take care,

Shane

Shane

If you have any ideas. Please share publicly if you don't mind.

My little fixes only go so far.

Marco

Hi Marco,

Here is a modified version of what I wanted to send to Otis (I'm happy to share but you're just going to have to trust that the changes aren't substantive but needed to be made).

First with regards to heat and cold intolerance, those are two separate issues. They are often framed as a single question but that implies a shared underlying mechanism, typically autonomic. I have had problems with heat and cold intolerance from very early on. I thought that they were likely related. In 2009, my long standing intermittent diabetes insipidus became florid (please stop me if you've heard this before) and it was treated with desmopressin. Once my fluid volume was normalized with the 'desmo' my cold intolerance issue completely and (apparently) permanently resolved (so did all of my OI issues along with other problems I had not associated with low fluid volume although I knew I was experiencing episodes of high fluid loss). In retrospect, I was constantly dehydrated and that was causing me to always feel cold (I was cold - at least peripherally). Others whom I have PM'd with have had similar experiences with desmopressin.

Yeah, no more cold intolerance issues for me. However, I continued to have both night sweats (waking up drenched - especially around my head neck and groin) and a strong intolerance for heat and sun exposure. The night sweats have resolved since starting Valcyte last May. I can't swear that its viral but I have one or two minor episodes in the first few months since starting Valcyte and none in the last 6-7 months. I used to have several episodes a week.

So, for me, that leaves the heat intolerance. This seemed to be you primary complaint. It is very clear to me that my heat intolerance has everything to do with an inflammatory response. The severity of this response for me is also somewhat less intense since starting on Valcyte but many things can bring it on and it is often (but not always) accompanied by facial/head and neck swelling. I have found little that helps with this except getting to a cooler place (I literally stood in the walk-in cooler at Costco for 20 minutes after over doing it by making a trip to Costco when I wasn't well enough rested). I've heard of patients wearing cooling vests to combat this. During the summer (especially now that my DI is under control) I dread the heat. I suspect that this is a relatively common response across a number of diseases. A recent study found that MS patients do far worse in warmer weather (I can find the reference if you're interested); poor cognitive function, etc. I suspect that this is an inflammatory response occurring primarily in the brain and spinal cord (it's even happened a few times to me when I've fallen asleep under too many blankets - when I first get in bed it helps with my neural symptoms if I warm up as much as possible but too much heat while I'm sleeping and I wake at 3 am with my face and neck swollen and red).

I should probably revisit my thyroid labs. Over the last 5 years I've dipped hypo sometimes but never a hint of hyper but I don't recall if I had antibodies tested.

I need a new endocrinologist as my last one told me he wouldn't lift a finger to correct an misinterpretation made by my disability carrier relating to a statement. Turns out he moonlights as a doc working for disability companies. In the business world that's called a conflict of interest. In the medical world that's acceptable. But I digress.

My sense is that this is vascular but am not entirely sure. I'm worse when upright. I recline in a chair or prop myself in bed most of the time.

Recently I was in a sweat sitting up to watch a hockey game in a freezing cold (<40) rink. At this point, I need it close to 60 if I'm sedentary and upright it's worse. But I've been chilled to the bone at 50 too.

I'm pretty much house-bound at this point with the exception of (very) occasional family events and necessary trips to the doc and pharmacy.

this is a timely topic for me as I am being reminded how bad the warm weather is for me. I live in the midwest and we had a mild winter and it was perfect for me temperature wise, I got spoiled. Once its 68 and sunny and above I have to stay inside, it was already 80 here I think on sat and I needed to have the a/c on that is interesting the idea it worsens inflammation, thats probably it, last summer was just terrible and the sun too makes me break out in 3 dif ways. I really need to move to the west coast rainy area sometime. I used to prefer the warm weather but now I look forward to rainy days, I dont like really cold winters either but at least you can bundle up.

so what sort of medication for thyroid does one need for heat intolerance, if its related? I don't tend to tolerate kelp and armour and rhodiola etc I don't tend to tolerate many things......

Good info, CBS.

My main problem is heat although my extremities, especially feet, are always cold. I have been chilled to the bone at 50 but that was a one-time thing a while ago.

I tackled the hydration issue with minor benefit - I had higher hopes. :worried:

I think the viral and inflammation theories fit my situation pretty well. Not sure if the virus is nibbling on the autonomic part of my brain or creating inflammation or both. I'm hoping some pending labs will shed some light on my those things pretty shortly.

I'm most comfortable in a chilly room with a light clothing or covers that breathe well. I do get night sweats but they typically come when I sleep deeply which is so infrequent that I don't really mind when they come.

I'll have to remember the walk-in cooler trick. Sir, open the door, get out of the freezer and put the ice cream back. Sir? Sir?!?! ... Cleanup isle 8.

Do those scarves really work? My hubby reckoned they would just heat up with your body temperature. If it helps anyone I saw on them on ebay for around $7AUS.
I guess the cooling vests designed for MS could really help too.

Thanks for the info Shane.

For the first ten or so years I had cold intolerance (constantly hugging radiators) but still enjoyed the sun despite minor problems with heat. That all changed between 1996 and 1997. In '96 we holidayed in Goa and it was fine. My symptoms deteriorated badly in early 97 (with new symptoms including rapid weight gain and heavy sweating) and a holiday in Egypt that year was intolerable. OK Egypt may a little extreme and possibly very humid around the Nile but the principle has stayed the same. I can no longer tolerate the sun or even moderate heat.

As for cold tolerance I no longer hug radiators but once I get very cold it can take literally days to restore core temperature (I had to abandon astronomy as a hobby because of this).

While I don't have any evidence for a viral infection in my case I do believe inflammation is underlying this and other problems. The subjective feeling for me is systemic inflammation with a growing feeling of inflammation and simultaneous lightheadedness as the day progresses and a very red face and neck. Heat just accelerates this process.

Some of the factors that I suspect might contribute (which are not mutually exclusive and are more likely all linked) are :

high levels of oxidative stress and resulting inflammation (due to whatever stressor - take your pick of references);

insufficient production of heat shock proteins that usually protect against oxidative stress (see Jammes et al 2009, 2011);

leading to endothelial dysfunction causing vasodilation and hypoperfusion of large and small blood vessels (peripherally in the skin and centrally in the brain - Newton et al 2011);

also leading to mitochondrial dysfunction (under mitochondrial stress the peripheral blood flow to the skin normally used for cooling is sacrificed to protect vital organs).

In theory - although we have evidence to support each of these 'deficits'?


So apart from the practical measures already discussed it may be useful to combine a reduction in oxidative stress, mito support and vasodilation.

N-Acetylcysteine is a powerful antioxidant and glutathione precursor. Its also recommended that you combine NAC and magnesium. Magnesium is a vasodilator.

I'll let you know how I get on.

Dehumidifier? If you think humidity makes it worse for you. It could probably reduce the feel of the temperature? i.e. Humid and 90 would feel worse than dry and 93?

Wetting your hair or shirt (while having fan/AC/window breeze on you) if you don't mind some humidity (as they dry).

Years ago, I got a cooling scarf / band. Only tried it twice, I hated it, because of the humidity coming off it. I was already hot, I didn't need a mini humidifier right by my neck and head. The moisture in it was evaporating off quickly due to the heat of my neck and the air.

But, I am sure in other situations it would be nice, or work for some people. I could imagine it working with fan or air conditioner on me.

Mestinon can help

I have severe heat intolerance at 24 Celsius and over. I am so grateful that this thread led me to find out about cooling vests for people with MS. (I don't have MS though, just CFS). It has also helped me feel less alone in this as this seems to be rare even among us CFSers. Before I wasn't able to get from my air conditioned apartment to another air-conditioned place, and most places are over 24 degrees in the summer where I live, even with AC. Even in the winter I need a cooling vest to go to a house that is kept at 24 degrees C!

I have done every possible lab test and nothing shows up. Freezing showers, wet t-shirts, all those things help too but then I vacillate between cold and hot and cannot come to an equilibrium for a long time. I have also noticed that every episode of heat stroke/exhaustion makes one more vulnerable to them in the future. I also don't sweat at all. (maybe a but in my armpits but that stops when it's over 24. I just shut down!

I

Hi Cornichon

I'm coming to the conclusion that heat intolerance and many other symptoms may be due to peripheral and/or more likely autonomic neuropathy.

No mentioned here but fatigue and exercise intolerance are also symptoms :

http://www.patient.co.uk/doctor/autonomic-neuropathy

I'm currently taking B12, B complex and may add CoQ10 or Alpha-lipoic acid for various neuropathies.

"I'm coming to the conclusion that heat intolerance and many other symptoms may be due to peripheral and/or more likely autonomic neuropathy."


I looked at the link but don't understand it. I've had every test done that the specialist could think of and no explanation other than CFS. I take B12 and CoQ10 which are both a bit helpful for overall wellbeing.

Yes, with Autonomic Dysfunction/Dysautonomia/POTS etc. temperature regulation is a problem. Usually heat is a huge trigger. My Quercitin/Nettles supplements help a lot.

There are wonderful cooling jackets and accessories, I have them all in case of emergency. I stay cool with air conditioning. I got my products at the company below, nice people. A really great one for the neck is so effective. It has ice packs and last for three hours. I have small fans I take in my purse to restaurants etc in case I get hot. They are never hot, it is just me. I am improving so much so this problem is much better now.

http://www.polarproducts.com/polarshop/pc/home.asp