Any views on Modafinil

[GHG_]

I've read a fair bit about positive tests relating to the use of Modafinil for the fatigue associated with MSA, which I have been diagnosed with. Does anyone have any experience of, or views on the use of Modafinil.

G

[SaltyFlorist]

I have a friend who takes the medication for ME/CFS. She has had great success with it.

It is something that I was very interested in until I began taking Midodrine, which currently gives me the energy I need to care for myself.

I am also interested in knowing more about its use with MSA if anyone has experience with it.

[GHG_ in reply to SaltyFlorist]

Thankyou for your reply Salty Florist. I asked this question to my neurologist, as I had read of the benefits of it but he simply said it was used for narcolepsy. My day time fatigue is constant and whilst Modafinil is for narcolepsy, there are many drugs which are used for other conditions they are not necessarily intended for, however the side effects which may be beneficial for other conditions. I don't understand why they don't give it a try, you cannot buy it over the counter without a prescription. What have they got to lose ?

Added.... Can I ask, did your friend get a prescription from her GP or did she have to be directed to her neurologist to give the okay for a prescription to be issued by her GP.

[SaltyFlorist in reply to GHG_]

I apologize for my delayed response. My friend got it from her GP in the US.

I’m with you about using meditations in unconventional ways. Like you said, what have we got to lose?

Many doctors hate having specific medications requested by patients. As if we’re in this for the drugs. Laughable.

They also have a difficult time going off label. Especially with such little understanding of MSA by the medical community.

Did your doctor offer you any solutions?

My doctor is a “go by the book” kind of doctor. However, he recognizes that I am an unconventional patient and is willing to try unconventional therapies.

If he did this with every patient he would come under constant scrutiny. But we are not the norm.

At this point the purpose of our medical team is to help us have the best quality of life possible.

Don’t give up on finding help with your fatigue. Don’t be afraid to tell your doctor the extreme measures you take to stay alert. Sometimes that is a real eye opener for them.

Best Wishes

[GHG_ in reply to SaltyFlorist]

Many thanks Salty Florist, I'm in the UK (heaven help us) so not sure how they will look at it here. You wouldthink whether someone had this condition anywhere, and positive reports were from the US or anywhere, they would be open enough to give this a try. Many thanks for responding and I won't give up the fight, what option do we have?. Your friend is lucky that she has an openminded GP. I see my neurologist again in January as my voice seems to be going. I hope your friend is keeping well. 😊

[SarahHes]

This is really interesting. Dad is currently taking two different drugs (midodrine and fludrocortisone) to try to maintain his blood pressure and stop him from getting the debilitating episodes of fatigue and weakness, but they’re not having any impact at all. I’ll look into modafinil - and would be interested in hearing more.

[GHG_ in reply to SarahHes]

Thanks for replying Sarah, I feel for your Dad, I know how debilitating constant fatigue is, it gets you down. I sopke with my Neurologist (old school) who says it's a drug for Narcolepsy. There are various drugs used for coditions they weren't necessarily originally intended for.

I don't know if the nurses read these columns, but it would be good to get some feedback on whether the drug is being used to help with the fatigue associated with MSA.

[SarahHes in reply to GHG_]

Yes - when I googled it the drugs info page said it is sometimes prescribed for purposes other than treating narcolepsy - but didn’t go into any detail.

Dad goes to an exercise class for people with Parkinson’s-type conditions, and they all describe this feeling of absolute weakness, particularly in the legs, that just leaves them utterly wiped out. I just wish there were something that could stop this happening.