Severe overheating

[tamilard]

I’ve posted before mentioning this symptom. I now overheat really easily. I used to love summer and lying in the sun, but these past two summers have been brutal, so much so that I sometimes wanted to stop existing. If I’m too hot for more than 5 seconds, I start to get a panic reaction. I’ve barely left my room, have 3 fans on blast, and AC on really bad days. I’ve sat in a tank top and underwear in a frigid room while other people would need long pants and a sweater to stay in my room.

I’ve developed mild agoraphobia, even for certain parts of my house, because I get anxious at the thought of overheating. I’ve started taking CBD oil a few times a day, which usually does help manage my anxiety to the point where I can at least lie in bed and watch a show without feeling like I’ll suddenly have a panic attack. There have been days where I’ve literally felt like my life was in danger the entire time, and all I would be doing is watching a lighthearted show and cuddling with my pet in bed. It’s so difficult to play computer games now because it heats the room right up, and my brain has now started to associate videogames with anxiety because of the heat factor.

Whenever I leave the house, which is only for appointments now, I need to take a sedative so I won’t immediately burst into tears if I become too warm. I don’t want to be taking anxiety meds daily just to cope with temperatures higher than 15C. Our home life has become so bland and unfulfilling. The most I can really do is sit in my chair in the living room on cooler days, while still being blasted with a fan, to watch tv with my mom for an hour or two. I’m so drained that I have no inspiration to write or make music, which are two of the main reasons why I choose to keep fighting this disease.

Anyway, I’ll wrap this up soon. I’m on duloxetine /Cymbalta, and I was on the highest dose. Apparently the antidepressant can be known for creating hot flashes, so my nurse practitioner lowered the dose and added some pregabalin/Lyrica. This, along with the CBD, has made me sliiightly more tolerant of the heat. I also read that ALS might affect the hypothalamus, the part of the brain which regulates temperature. This would make a lot of sense, because the overheating issue has been getting worse throughout the progression of my illness. My ALS specialist team hasn’t been all that knowledgeable on many of my more “obscure” symptoms, unfortunately…

Has anyone else experienced anything like this? What have you done about it?
PS I will still be posting my introduction sometime soon. I’ve been distracted by everything I have mentioned above.

 

[Colleen15]

I was diagnosed in March ‘23, bulbar onset, and yes the heat this summer bothers me much more than past summers. I just stay in the air conditioned house.

 

[MupstateNY]

some ideas to consider ( if any are duds, pls disregard).

-learn how to cope with panic attacks froma therapist

- take extrashowers

- use a cold washcloth and drape it over pressure points, eg inside of wrists

- spray cold water on your head

- drink ice water

- ask team gleason for smart home funding (i like to be able to control the thermostat)

-cycle through freezer cold packs (using kitchen towel to protect your skin)

- check if you are having any itching

- go for an eve. walk with a safety vest

- see an endocrinologist

- are you going through perimenopause?

- try a different ssri

-try buspirone for anxiety

_ do not snuggle in bed with pet -- play with instead

 

[Doing My Best]

Hi Tamilard, my husband PALS has become much more sensitive to overheating since he was diagnosed. He wears very lightweight clothes and often sleeps only under a sheet while I am wearing sweaters and putting big comforters on my bed. I can't say we've really solved the problem in any unique way, but a few things that have helped are having ice cold smoothies for meals (not any more because he is now on a feeding tube), which seemed to cool him down from the inside in a more lasting way than iced drinks; keeping good airflow in the room via fans and windows, and my just being sensitive to the fact that he overheats so easily, so that I can make adjustments in room temp, clothing, or whatever. I'm so sorry it's taken over your life - I think Mupstate had very good suggestions. I especially think it would be worthwhile to see a therapist about the panic attacks, which can be so debilitating, because I know from experience there are ways to reduce the frequency and effects.

 

[lgelb]

Whoa! Adding buspirone to an SNRI (Cymbalta) would be a potentially dangerous combination. Don't do that.

I would consider swapping an SSRI (e.g., paroxetine would be the first I'd try), for the Cymbalta. You can't take both.

Couple more thoughts for regaining your music sessions/pet snuggling:

Flexible freezer pack around back of your neck/small of your back, with a thin T shirt underneath
Rest your bare or thin-socked feet on same while you create
Redirect your fans and shift their position around from time to time. Make some static and some oscillating.
Stay hydrated and keep an iced lemonade or whatever at your side

I would try "cold" instead of "wet" generally, because wet can become clammy as your body tries to compensate.

Also, presuming you are not on BiPAP, is your breathing OK when you are not feeling overheated? Slow deep breathing where you expand your diaphragm during inhalation, during good periods, might help.

Agree with finding ways, professional or DIY, to manage the panic, which magnifies feelings of heat and agoraphobia. Find a mantra and practice that helps your conscious mind focus on the fact that you are not actually overheating. You might want to take your temperature once in a while to reinforce this point.

Best,
Laurie

 

[Kelbi]

If you got some really long USB and AV cables, maybe you could put the computer tower in another room?

 

[tamilard]

Thanks for the suggestions, everyone.
Today I woke up feeling very optimistic. After breakfast I actually went outside! The sun was hot, but there was a strong, cool wind, and the shade was great when it started to get too warm for me. Was out there for a little over an hour, and it was nice to feel somewhat normal again. I then played on the computer for a few hours with the fans on and was ok for most of it.
In the short while since I've posted this topic, I've spoken to my NP about medication and we're considering switching to Prozac (SSRI). I was taking it prior to my diagnosis and I remember it helped me with the daily panic attacks I had been having. I'm wondering if this will help alleviate more of the anxiety and overheating. I'm also seeing a psychologist again in a few days, which I'm sure will help as well. I haven't spoken to a therapist in 3 years and now I need to. I'm also allowing myself to use Ativan as a fallback if nothing else helps, and trying not to feel guilty about it ( though I am using it responsibly).
I'm hoping that once the temperatures begin cooling down for good, I can leave my room more and spend time in the kitchen again, my creative and gaming space!

 

[lgelb]

Glad to hear this! Everything sounds very positive. Of course, whatever SSRI helped before is the first one to try. Just FYI for others, I mentioned paroxetine because it has more data to support this particular purpose. Finding the best SSRI can be trial and error and none is right or wrong for all.

Best,
Laurie

 

[Doing My Best]

Sounds like a lot of progress already, with more to come, so glad to hear. As I think has been discussed elsewhere on these forums, there's probably no reason to hesitate using Ativan when you need it, if it helps you. My PALS takes it daily and it is a huge boon to his overall sense of well-being. I don't think developing dependency is the same concern for PALS as it may be for others.

 

[tamilard]

You are likely thinking about my own post from about a month ago! I'm still just concerned about potentially having to increase the dosage more and more if the Ativan loses its efficacy/I develop a tolerance, since my NP warned me that could happen. I should be starting the Prozac while reducing the Cymbalta next week though. Wish me luck!

 

[Doing My Best]

I'm sure you're right, sorry for the redundancy! Hope you get good results from your new regimen. Best of luck!

 

[okbangel]

I’m having the trouble of regulating my body temperature. Im hot after a little bit of exertion. And then I freeze if I’m not been moving for a while I’m not getting it either.