trouble adjusting to riluzole?

[Jennifer51]

I posted a few months ago to say I was VERY happy with riluzole and did notice an improvement within hours of first taking it. I must be one of the lucky ones...I am STILL extremely happy with it for the same reasons, and now I find that to have any chance of getting on the UK trial for lithium, you MUST be taking it...I am waiting to here if I might get on the new UK trial.
jennifer51

perhaps I should clarify...my improvement was that I noticed a reduction of my terrible terrible twitches...they were unbearable before I took Riluzole...they are still present but much reduced...still dont like them at all, but at least they are less now.

 

[Zouz]

I promised that I'd report back and I am now because I see improvement. It has been three days now without Rilutek and already feel better. I would also like to share this: I also started a Bi-PAP machine three days ago as well to help me breath better. Sleeping through the night has improved. Doctor had a comment that starting it early has shown to delay tracheotomy. I used to complain about a short breath recently and after a breathing test, I passed as a candidate for the Bi-PAP machine. In a matter for couple of days from starting it, I was able to take in more air. This breather must have helped stretch chest muscles/diaphragm and allowed them to flex better. More air-> more oxygen-> better sleep-> better days. If anyone is experiencing a tight chest or short breath, even a slight degree, this Bi-PAP machine could be something worth looking into with your doctor.

 

[BethU]

Zouz ... thanks for the report .... and glad you're feeling better!

I'm in the process of trying to get a BiPap now, but it's my pulmonologist who's trying to order it, and the insurance won't give him authorization unless he does a sleep study that shows I need it. I've already had two sleep studies (before ALS was diagnosed) and I don't have sleep apnea, so I don't want to go through another one. I asked the pulmonary doctor to confer with my neuro, and he said, "I don't have to." (He's kind of a big jerk. He has apparently never heard of professional courtesy among doctors.)

I'm going to wait till my next clinic appt in December to see if the neuro can order it without a sleep study because I'm diagnosed with ALS ... that should be enough documentation of need ... but I want to get it soon, as I am definitely short of breath.

Thanks again for your posts. Very helpful.

 

[Zouz]

Thank you Bethu.

I didn't take the pulmonologiost route and I believe you're on to something taking the neurologist route instead.

I've been going thru the ALS Center at UCSF. Wonderful people and headed by a great, knowledgeable and compassionate doc. When I first complained about shortness of breath, they tested me on a large machine sitting down (blowing and in and out) I scored 93% which did not make sense to me as I could still feel a big drop from my past intake. This was especially true when laying down. I was let go after that first test. In few more days with continued shortness of breath, I contacted the doctor and complained again. She set me up right away with a pulmonary specialist at UCSF. This time they used a smaller portable machine and made sure they tested me laying down. Bingo. I scored 60%. That qualified me under my insurance. A week later they came home and set it up for me, and you know the rest of the story.

Hope the ALS doc route will work for you. Your pulmonologist does sound like someone you need not see anymore. You are correct, what an attitude! I hope it works for you and that you start feeling better soon.