please help

[Kristina1]

I will try to come up with an idea so we can talk directly.

why don't you email me: [email protected]
it's my blog email address not my personal one so i feel comfortable posting it publically

 

[Dee Dee 0617]

Everything they have all said plus a banana split. Potassium, magnesium, and calcium are the natural trifactor of leg cramp relief. God bless you kiddo, hang in here with me.

 

[notBrad]

I used to have that problem. If I would lay on my side it felt like someone was driving an ice pick in my hip joint. Bright side is that it went away suddenly and hasn't returned.

While it was happening I was taking percocet and morphine but I have a super high tolerance.

Anyway I hope you find a solution!!

 

[OutlanderALS]

I have the same types of leg issues and I am so sorry that you had to endure such a night. The baclofen and tizanidine combination has finally given me more restful nights. I hope you find a combination of therapies that are helpful to you, because I do believe that it takes combinations of therapies for us. Good luck and glad your son is ok!

 

[Kristina1]

Do you really need the oxybutynin given that you mentioned UTIs in another thread and it can worsen sleep?

Laurie, you offered some really great feedback that I will talk to my neuro about at clinic in 2 weeks. But I wanted to address this. I have bladder spasticity. For me that means I get two opposing symptoms:

Sometimes I have urge incontinence. BUT other times I feel the need to pee, sometimes urgently when my bladder is over full, but I cannot initiate the flow of urine. Once it got so bad I went to the ER to get cath'ed.

Since starting oxybutynin, my urge incontinence is well managed, but ive wondered, is it making my other problem worse? And is it normal (in ALS) to have both problems when they are basically opposites?

 

[Nikki J]

It is certainly possible to have opposing issues in ALS. As an example if you are still walking and have issues with spasticity taking baclofen can help a lot but you need to be careful because it can unmask weakness and then you can’t walk safely either. It becomes a balancing act

and sometimes we can have non ALS issues just yo complicate things

 

[blitzc]

Kristina, I having nothing to offer about the meds or other methods to help. But I am so sorry that you have had to experience this. It sounds like others have offered ideas of how to proceed.

Best wishes for more comfortable sleep and recovery for your son.🤗🤗🤗🤗🤗🤗🤗

 

[bigmark1954]

I am prone to having excruciating cramps in my legs at night. I have found something that helps, I put 2 pillows under my knees at night. By keeping my knees bent it cuts down on my leg cramps.

 

[KimT]

Mark, I sleep with a huge pillow under my knees, too. Helps with my back issues.

 

[Jimi]

I am prone to having excruciating cramps in my legs at night. I have found something that helps, I put 2 pillows under my knees at night. By keeping my knees bent it cuts down on my leg cramps.

I sleep in a zero gravity recliner - knees can be set up with a bend. Pretty comfortable and adjustable

 

[lgelb]

For those who haven't ordered a bed yet, the same "knee up" effect can be gained by a hospital bed with full Trendelenburg/reverse Trendelenburg settings (not the same as a basic hospital bed -- think of it as more of the Acura model). It has other benefits, too, like easier to use a male (and possibly female) urinal in the reverse Trendelenburg position. One example of such a model is the Joerns Ultracare XT, if you want to see an example online.

 

[Vincent]

As far as cramping/spasticity go I have not had any issues since starting on Cannabis. I use an oil that contains equal parts THC and CBD. The oil has a content of 12.5% of each. YOu don't need to be a zombie all day either. I use .5ml in the morning and 1ml at night. This allows me to function during the day and enjoy unbroken sleep at night. No cramping or spasticity and I've even cut way back on pain meds. Try it,it works.
Vincent

 

[Missgranma]

This thread was informative. I'm fairly new to posting. My sister is th Pal and it is the spacticity that causes so much pain.
Moving, stretching and tramadol are all that helps. Benzos too

 

[Doglady]

For what it’s worth...I had lots of very painful cramps early on and found Mexilitine eliminated them completely. After over a year of taking it I’ve gradually reduced and now am not taking it with no further cramps. I think my leg muscles are now too far gone to cramp.

 

[lgelb]

Re having both urinary urgency and hesitation, yes, Kristina, that happens in ALS, and may also be the case with bowels. The muscles can get weak and lose tone, which can work both ways.

You are the only one that can tell which symptoms are hardest to manage. But yes, drugs for urgency would tend to increase hesitation (and can also cause constipation) as you say. There are other drugs in the class so you might want to consult a urologist who has greater knowledge of their "in practice" differences and suggest if there's a better option for you to try.

Best,
Laurie