Hot Flashes:

[KissJ]

My husband was diagnosed in May and again in June, 2011. Lately, he has been having hot flashes immediately after he eats. Has anyone (PALS) or Caregivers noticed this? I know everyone is different and I am aware that this could be something else...another medical issue, but I want to simply know if he is alone with this until he has his appointment to see what is up! Thanks!:?:

 

[abbas child]

I don't have them after eating, but any exertion can make me really hot. Digestion burns energy, so I guess I see a parallel. We're all weird in our various ways!

 

[sadiemae]

Read this thread permalink #9

https://www.alsforums.com/forum/als-caregiver-support/16484-shaking-tremors-possibly-rikers.html

 

[abbas child]

Yes--the autonomic nervous system, KissJ--not a "typical" problem, but from time to time pals suffer autonomic problems.

 

[KissJ]

Thanks all. I'm going to read about rikers/rigors, and autonomic storms. When my husband and I first got married, and way before he was diagnosed or had any indication he had ALS he warned me that he has odd spells of "chills". After working hard outside...(he loves to build and do yard work). He would get the chills where he would not be able to regulate his body temp. He would be so cold that I would have to get multiple blankets, put blankets in the hot dryer, and what ever I could to help him. It wouldn't last long...maybe ten minutes or maximum twenty minutes... and it was gone! Now the "hot flashes"... it is like he can't regulate his temperature. However, it is odd that it is after he eats.

 

[cubcake]

My husband, too, is having trouble regulating his body temperature, but it is new symptom. He used to be a furnace, but now runs hot or totally cold.

He also has these strange episodes, several times a night. At first, it was only in his face; his mouth would dramatically turn down, his eyebrows would knit together and he would give this HUGE inhale, so big that he snorts a little. Now, it involves his whole body. His face contorts the same as before, but his body becomes rock hard rigid. When it goes away, his temperature spikes and he breaks into a clammy sweat.

Does this sound at all like what you are experiencing?

 

[notme]

My advice as usual is to discuss anything not 'typical' with the doctor. Even with ALS, as we all know, there can be other issues. A specific area regulates body temperature--perhaps there is an issue that's treatable with the proper medication.

Good luck!

 

[Atsugi]

As soon as my wife started menopause, I had hot flashes. Still do.

Since posting on this forum, I've found a feminine side.

After a week of having all of Krissy's sisters here, I've been forced to become a hugger.

Next, I'll be using maxi-pads.

 

[Gentleman Jim]

Atsugi,

Where did you get your sign in name? You are a very funny man. Military hardened and
relationship softened. You and your wife certainly have a book in you.

It was a pleasure to read of your experience's. The both of you must have really lived it up.
Again, I want to say, you sound like the life of the party. I hope you can continue with
that heart of passion, the mind of an entertainer for a life of encouragement.

Jim

 

[Atsugi]

Wow, Jim. You are so nice. Keep talking.

Atsugi is a Naval Air Facility in Japan. I lived there for 4 years with my first wife, who was a redhead (almost said "hot" redhead, but that's redundant).

Yeah, there a book in me, and a movie, and a TV show.

Unfortunately, the book of my childhood is a somewhat sad drama. It ends with a police take-down with guns drawn.
The movie of my 20s and 30s (20 years of service, almost entirely overseas) is absolutely p0rnographic, and filled with alcohol-laced debauchery in between moments of patriotic heroism.
The TV show about my work in the military (and outside) would be a sit-com, where I roll my eyes every time my boss says anything.

My wife Krissy (2nd or 3rd, depending upon which laws are in effect) straightened me out, and showed me how to enjoy life under a monogamous and sober totem, where "the authorities" are not involved.

I'm really glad you said those nice things. Thanks.

 

[Gentleman Jim]

Well thank you for responding with the Readers Digest version. Perhaps you will write the
book, get it in the movies and also a sitcom.

I guess when we all get older it becomes about where we are going rather than where
we have been.

Take good care of yourself my friend.

Jim

 

[KissJ]

Thanks for the advice about hot flashes. I told the doc at the Pgh ALS Clinic and he said, "oh that is strange"...that was that...nothing else was said, asked, discussed, etc... so I tried notme!

 

[abbas child]

Why am I not surprised.... I have learned almost all that I needed right here. The odder problems normally are off our doctor's radar!

 

[susanf]

Kiss,
I get the same thing when I tell my Neuro at the clinic. I have so many weird symptoms too.
Mike, What you did before doesn't matter, even thought it sounds like a hoot! You are a sweetheart

 

[cervus]

My husband had an episode about 6 weeks before he died where he had these full body spasms which sounds a bit like what you're describing, cubcake. Maybe not though. Anyway, he had about 4 or 5 of those spasms over an hour starting at 10 p.m. I spoke to the head neurologist at the ALS Clinic about that and she suggested that he was starting to store C02 and that he might have been tired and that this was not uncommon in her 20 years of experience with ALS. Around that time, Bob started feeling warm at times, something quite unusual for him as he'd been "cold" since 2003 after chemo sessions. Anyway, about 10 days before Bob passed, he started with these spasms at night - a spasm that would start in his arms, and move across his body so that his legs, right up to his neck, stiffened and extended. These got increasingly worse before he died and for about 3 days these spasms were almost continuous. Doctors (our neurologist was away on holidays) thought he might be seizing so started him on anti seizure drugs which of course didn't work. I tried to give him a bit more morphine (he was only on 1 mg every two or so hours) and I upped it to 3 mgs and this seemed to settle the spasms. When the morphine started wearing off he would start spasming until another dose was administered. When the neurologist got back, she phoned me (two days before Bob died) and said she'd never had anybody suffer these spasms the way Bob did. I asked Bob if these were painful and he said yes - and they tired him out. So.....I've been rambling. Please don't think I'm scaring you because what your PALS is experiencing could be something completely different. Just sharing our story. Take care. Yasmin