New introduction

[Jessie]

Hi i joined tHis site in nov 04 but Haven't posted mucH at all. i tHink it is time to introduce us. my Husband vic was diagnosed last year witH als after developing symptoms in tHe summer of 2003. He was a long distance runner and as of dec 2003 is in a wHeelcHair.
it Has been a year of so many cHanges and so mucH emotion. tHe disease seems to be moving ratHer fast. vic Has been a wood carver, quilter, bread maker and singer. no more. He Has sHown great fortitude but tHe losses Have been Hard to accept.
we are blessed witH a large support group of family and friends. we traded Houses witH our son last sept. as we Had a split level and tHey Had a bungalow. tHis was a great move as we Have stayed in our community and close to our kids .
i read tHe als forums every morning and get encouragement and Help. tHank you all. i Hope we can contribute over time.
my one question tHis am is about sleep difficulties. vic is on 1200mg gabapentin, 70mg baclofen and 100 mg rilutek. His nigHts are basically awful due to cramping. any ideas? we saw tHe neurologist last week and He increased tHe gabapentin. we can't see tHat it Has Helped.
wisHing you all a sunny and peaceful spring day wHerever you are.
jessie

 

[karenmorrison]

Hi jessie....

sorry to Hear tHat your struggling, but nice to Hear from you. ricHard Has a slow progression of als...He is on baclofin as well, and He was struggling witH sleep and terrible nigHmares...i put ricHard on simple gravol...He takes 2 a nigHt...as well tHis does Help Him witH His saliva as it dries it up...take care...karen

 

[me]

Jessie - just wanted to say welcome to the group. glad to know you've been reading and encouraged. we hope you'll post with us more as it is good to hear as many perspectives on things as possible. that's so great your son was able to trade houses with you and that you have a good supportive family! melissa

 

[mannco74]

hi jesse

Sorry to have missed you and vic at clinic i was using to much suction and other stuff which may put off new pals. welcome to the forum but dont be afraid to call or write any time,
chris mann

 

[Al]

Hi jessie. ask your doctor for quinine 300mg. it's actually an anti malarial med but it sure works for me and lots of otHers for cramps. i was taking 10mg of baclofen 3 times a day and still cramping but on tHe quinine i Have gone down to 5mg morning and nigHt. i Haven't Heard of tHe gabapentin but i'll look it up.your gp can prescribe tHe quinine. good luck.

 

[Timshelper]

Dear Jessie,
Ive wanted to get back to you on this gabapentin issue. the chemical name is Neurontin and is usually used for epilepsy in small children or people who have had strokes ie my father so there wont be further seizures. The other reason it is used is for neuralgia usually the pain that follows after one has had shingles and the pain does not go away. One of the side affects is drowsiness and muscles weakness. Its basically used for the central nervous system.

Cramping doesnt seem to meet the criteria. Also the baclofen is used for spasms for muscloskeletal system and it also can cause muscle weakness. Spasms are different then cramping and I agree with AL on this one because I take Quinnine too. I know I have gone off it numerous times just to see if it really does work and I've regretted it everytime. They say we get cramping from not having enough potassium in our bodies and our electrolytes are low from not drinking enough also. We all think Pedialyte is just for children but it can definitly be used for adults as well especially if they arent drinkng enough throughout the day. I really think you should check into the gabapentin info though it could be enlightening and frightening at the same time.
Kim
ALs About Loving Someone

 

[Jessie]

sleeping difficulties

Hi and Thanks to all of you who responded to my question on cramping and poor sleep.
I did read up on neurontin (Gabapentin), TImshelper, and it was indeed a disturbing eyeopener. Vic is now on 1600 mgs of it plus the Baclofen and Rilutek.
We may try the Quinine, Al. Have tried the Gravol and it had no effect.
I am learning leg and foot massage by trial and error and that seems to provide a lot of relief in the wee small hours.
Maybe we'll see you at the next clinic, Chris or at Betty's Run in June?
Am just back from 4 days in Sask visiting my elderly Dad. I was able to go because Vic's brother and our youngest son moved in to keep Vic company. Driving through the Prairie spring was a real tonic for me.
Wishing you all a peaceful day.
Jessie

 

[mannco74]

see you ther jesse

about the cramps i think massage was most effective...you know hands on. my cramps have gone [not a good sign really] but i never took anything for them as thought they were from chloresteral meds. as i said u can call or write any time.

all the best to you and vic