Anyone taking 3,4 Diaminopyridine (3,4 DAP)

[Tyke-]

I have SCA 6 and nystagmus as one of my symptoms. I’m increasingly having difficulties with this when walking as it exacerbates the poor balance problem. I’m currently taking Gabapentin and have been doing so for a number of years.

It’s been suggested by a healthcare professional that for the nystagmus issue I could change to taking 3,4 diaminopyridine instead of the gabapentin.

there seems little information available about this drug, if anyone has experience of it I’d love to hear about it.

Thanks

[wobblybee]

🙂 I also cope with Nystagmus but I haven’t taken this myself …I’ve seen references to it being useful for Nystagmus (Facebook Ataxia Support Groups)..

[Tyke- in reply to wobblybee]

Thanks wobblybee

[janfach]

I take Baclofen for nystagmus which seems to woek and I can tolerate it. I haven’t tried anything else.

[Della61]

I take Diaminopyridine 20mg three times a day. I have genetic SCA49 and nystagmus. Originally dose was 10mg increased to 20mg. This seems to work for me. It is delivered from Sheffield Hallamshire hospital.

[Tyke- in reply to Della61]

Thanks Della, are there any side effects?

[Della61 in reply to Tyke-]

There are but I only have the slight tingling around my mouth up to half hour after taking it....a bit like the after effects of a dental injection. It can also cause nausea, headache and insomnia amongst others. I have no symptoms other than the tingling around the mouth. You can find other information online, but I'd definitely give it a try 😀

[carol31271]

I'm taking gabapentin but I haven't got nystagmus, so not sure how much help I'll be? I've been advised by my neurologist to stop taking gabapentin and have deep massages 2x per week, he recommended a sports massage, but I know a couple of people that have had this, said it was painful and would never have it again. Fortunately we know someone who does deep massage and is willing to spend an hour and a half once a fortnight and doesn't cost too much either as not available on the NHS?.I've taken it gradually and reduced it by half over 6 months also take Tizanidine (muscle relaxant, kept having spasms) hope this helps?

[wobblybee in reply to carol31271]

Hi Carol🙂

After enduring increasing pain in one of my upper arm muscles..I self referred for NHS Physiotherapy. I didn’t get improvement from prescribed exercises, so I had ‘deep massages’ from the Physio I was seeing privately for Balance Exercises. I can confirm these were very painful..although they did give results.

I can now lift the arm above my head ..although the muscle still does tend to ‘click’. My Private Physio thought I should have had a Scan to confirm exactly which muscle was involved, but the NHS Physio said I would have to work through his prescribed exercises, and if no improvement I’d be referred to a Specialist…these exercises were for 12mths. Unfortunately…movement is better but I’m wondering if the ‘deep massage’ has triggered other increasing pain in this arm…I see the NHS Physio again at the end of this month.

[carol31271 in reply to wobblybee]

I hope this gets resolved for you, I know pain on top of everything else is difficult it sounds like deep massage ,I find some areas painful but worth it! Xx

[Tallguy101]

Hi Tyke I was diagnosed with sca 48 in 2006, I take 20 mg of baclofen daily mainly for muscle relaxant as I get tight muscles in my legs. I suffer with mild nystagmus and double vision. I find it helps without any sideaffects.

[wobblybee]

Fampyra or fampiridine is now used in some cases of downbeat acquired nystagmus.

This link gives other options when coping with Nystagmus.

nystagmusnetwork.org/inform...

[7151]

Hi dont know about this new drug but gabapentin had very bad side affectés i stick with tramadol