Input Request: I've lost so much, please don't take my beer!

suchahoward

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Hi all,

First time posting here. About me:
  • Diagnosed in July 2018
  • Upper extremity onset
  • Just completed the Brainstorm/NurOwn trial, obviously got the placebo
  • 54 years old, married, 21-year old son
  • Still walking, but tire easy and too much and my fasciculations intensify and cramps are excruciating
  • Taking riluzole
  • Longtime performing musician (guitar, vocals), can no longer play, devastating
  • Longtime hiker, cyclist, kayaker, can no longer do these things, also devastating
  • Can no longer button shirts, tie shoelaces, I drop stuff constantly
  • I LOVE craft beer, we have 12 breweries in our town of 80K people, and I REALLY want to keep drinking socially (about 2 outings a week, 2-3 pints per outing), especially given all of the other things dear to me which I've lost.
Input Request
  • Has anyone identified beer or other alcoholic beverages as definite triggers for intensified fasciculations and cramps? (I have not been able to clearly determine this. I've stopped drinking for a week or two and still had flare ups, either from physical exertion or some other unidentified factor.)
  • What has been your trajectory with alcohol?
  • Have you been on medications that disallow alcohol? If so, which ones?
  • Have you noticed any other ALS symptoms that seem to get worse when drinking alcohol?
Conclusion

I will of course give up alcohol if I need to. I've never had an addictive personality and before I discovered craft beer I went years without having any alcohol, having had plenty in my 20s.

I'd be grateful for any and all input.

Thanks!

P.S. Yes, per etiquette on most discussion boards, I did first search for previous threads on this topic. If I missed something that answers my questions, I apologize and would gladly read an existing thread.
 

Nikki J

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Very sorry to welcome you.

I don’t drink but my sister did and had no issues that we could attribute to it. Generally I believe doctors will say alcohol is ok in moderation. Riluzole affects the liver so potentially there is an issue but my very petite sister drank several times a week ( one drink) and took riluzole as well as nuedexta and baclofen.

The other issue besides the liver is safety - don’t fall!

What does your doctor say?
 

suchahoward

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Very sorry to welcome you.

I don’t drink but my sister did and had no issues that we could attribute to it. Generally I believe doctors will say alcohol is ok in moderation. Riluzole affects the liver so potentially there is an issue but my very petite sister drank several times a week ( one drink) and took riluzole as well as nuedexta and baclofen.

The other issue besides the liver is safety - don’t fall!

What does your doctor say?
Thanks, Nikki. Yeah, falling is to be avoided!

My doctor, like with most things, has been annoyingly indefinite about most everything, but I don't see this as necessarily the fault of my doctor. More like the fault of ALS and the crazy way it manifests in so many different ways from pALS to pALS.
 

BK2011

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IMHO, I think you should enjoy a beer now and then. I’m eight years into ALS (obviously I’m a slow learner) and I enjoy a beer or sometimes two a day most days. It hasn’t seemed to change my fasciculations or cramps. My fasciculations seem to have gotten less as the muscles have gotten weaker. Had seriously painful cramps early on and for along time. Started drinking tonic water, which has quinine in it, and at about a liter a day it cut down the frequency of cramps. Gave up the tonic water when my A1C started getting out of control. Pain level decreased as the muscles deteriorated; it was such a slow process it’s hard to describe when things happened. Recently went on baclofen and it seems to help a little but I’m still rolling out of bed multiple times a night with leg cramps. Sorry I don’t have better news. Bottom line, enjoy the beer even if you have to use a straw.

Bill
 

suchahoward

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IMHO, I think you should enjoy a beer now and then. I’m eight years into ALS (obviously I’m a slow learner) and I enjoy a beer or sometimes two a day most days. It hasn’t seemed to change my fasciculations or cramps. My fasciculations seem to have gotten less as the muscles have gotten weaker. Had seriously painful cramps early on and for along time. Started drinking tonic water, which has quinine in it, and at about a liter a day it cut down the frequency of cramps. Gave up the tonic water when my A1C started getting out of control. Pain level decreased as the muscles deteriorated; it was such a slow process it’s hard to describe when things happened. Recently went on baclofen and it seems to help a little but I’m still rolling out of bed multiple times a night with leg cramps. Sorry I don’t have better news. Bottom line, enjoy the beer even if you have to use a straw.

Bill
Thanks so much, Bill. I really appreciate your input.

For about a year my doctor has had me on a drug for the cramps called mexiletine that no one I talk to seems have ever heard of. It was originally brought to market for heart arrhythmia, but somehow my neurologist heard it helps the cramps and it mostly has until recently.
 

KarenNWendyn

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I would also say enjoy the beer. Do have your liver enzymes checked every 3 months. If they increase 3-5x normal or more, then it’s time to give up the Riluzole, the beer, or both.

I relate to your post. I played bassoon in a professional orchestra and was devastated to have to give it up. I was also an avid hiker and long-distance road biker. Also had to quit. ALS sucks!
 

suchahoward

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Thanks, Karen. I can SO relate.

I do have my latest liver test scheduled.

And yes, ALS most certainly sucks.
 

KimT

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I've met many PALS, some on Riluzole, some not. They drink. I met one PALS who just liked the buzz and calming effect. He poured it down his tube.
 

affected

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welcome @suchahoward love your avatar!
Lots of PALS have a few drinks as many have said - I agree just keep your liver tests up and do what makes you happy without making you obviously worse ☺
 

lgelb

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Welcome, Washington, while sorry you are here.

Here is a clickable list of drugs affected by alcohol. It looks long, but the mild and moderate interactions may not be significant as long as you don't go overboard.

Mexiletine + ethanol is not a concern, nor is riluzole on the ethanol caution list though there is an old warning on the label based on a theoretical potential (the liver thing). I don't see any post-launch literature suggesting heightened risk. Sedation is usually the biggest issue for those drugs that are listed, but you can click for more info. I imagine you already have a designated driver.

The major implication of ALS for alcohol, besides injuries, is that you might metabolize it differently, given that ALS affects metabolism. I would stay hydrated. And upright, of course. I would go for steady rather than pint-in-gulps drinking and go easy on the salty snacks that may be on the table.

If you opted to try tizanidine, you would run into an interaction potential with continuing the mexiletine, and if it's not working any more, I would talk about stopping it anyway, since it can affect the heart. Tonic water (quinine) would also interact with tizanidine. And of course tizanidine and baclofen interact with other and with alcohol as potentially too much sedation.

As an alternative, for true cramps, magnesium, calcium, sodium and potassium balance is important, so experimenting with diet and even judiciously with supplements can be helpful. Magnesium lotion may work if the cramps are usually in one place. And you can try dietary interventions like a banana, OJ, etc. when they flare up. Heat (including a low voltage mattress pad at night), massage and stretching may be beneficial as well.

Best,
Laurie
 

Chuckdobro

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I started drinking diet tonic water and vodka after being diagnosed. I still drink beer, take riluzole, radicava, and baclofen. The biggest help for my cramps is yellow mustard. Two to four tablespoons out of a jar per day. The neuro will let you know if your liver enzymes go out of wack and need to cut back. Drink up! Screw ALS!

Chuck
 

nona

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I like beer. I miss it more than most things I've lost, including trail running. But I found that when I drank it I couldn't swallow, and my muscles felt even worse. Occasionally I'll have a few sips of a friend's beer, but the last time I had a quarter cup I was achy and couldn't sleep all night. I often ask my friends for a smell. The hoppy IPAs smell so good!

Mexilitene works for holding off my muscle cramps. I also take Nuedexta and, until recently, Riluzole.
 

suchahoward

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welcome @suchahoward love your avatar!
Lots of PALS have a few drinks as many have said - I agree just keep your liver tests up and do what makes you happy without making you obviously worse ☺
Thanks, affected! That’s me with two empty halves of a coconut on a beach in Hawaii trying to communicate with aliens. 😉🤪
 

suchahoward

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Welcome, Washington, while sorry you are here...

Best,
Laurie
Wow, thanks so much Laurie for all of that incredibly helpful info. I had suspected electrolyte issues from dehydration, even though I like drinking water and typically drink plenty. But, before I was diagnosed with ALS I had several blood tests that indicated that my magnesium, potassium, etc., levels were normal.

I’ll check out your other info, and thanks again.
 
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