Medication?

[Lucycord123]

Medication

I am prescribed pregablin 200mg 3 times per day (max available dose). Also, codrydomol 30/500mg 8 per day...I wake up in pain and go to sleep in pain. I take a million vitamins etc including lions mane (not a vitamin I know bit good for you). I don't have much faith in my doctors because they treat me like I'm just chasing drugs. I'm a social worker and want to keep my career for another few years. Does anyone have any advice on medication?

Lucy

[edfosho]

Hey Lucy,

I wouldn't call it advice, but I'm also taking pregabalin (same daily dosage, but 2x 300mg), and started on the minimum dose about 16 months ago. In addition to this, I have just started taking a pain killer called amitriptyline (smallest dose) - I can't comment on its affect yet (as I'm only a couple of days in) but it's what I've been prescribed, specifically for pain management.

I haven't explored taking vitamins, nor has it been recommended to me, plus I do take the occasional paracetamol when required - not prescribed though (but my GP did say it's fine). I maybe go through a pack of 16x 500mg tablets a week.

Similar to you, I wake up in pain and go to sleep in pain - but I appreciate we all have different experiences with the ataxia symptoms!

Ed

Edit: I forgot to mention I also take omeprazole (20mg capsule) once daily, for acid reflux issues.

[Lucycord123 in reply to edfosho]

Thanks for your reply. Its weirdly comforting to know there are others experiencing this don't you think? I think I'm going to request amitriptaline as I think I'm a tad depressed.

Thanks

Lucy

[edfosho in reply to Lucycord123]

Yes, I agree with the weirdly comforting point.

Also, yes amitriptyline is also used for treating depression nhs.uk/medicines/amitriptyl... - I hope you're getting (or seeking) other mental health support.

[Lucycord123 in reply to edfosho]

Thanks. I've decided I'm going to try alternative things beforehand including starting a wellness book...record daily what I eat, what vitamins, supplements and mess I've taken...what exercise I've done. I'm off sick at the moment due to burn out and a bad spell but I'm missing it alot, looking forward to getting back.

[edfosho in reply to Lucycord123]

I'm going to see how this amitriptyline goes, then explore alternatives. I've spent just over a year and a half trying out ways to manage pain, and I'm sure others have had much longer! Sounds like a good plan you've got though, good luck with it all.

I've also seen a lot about CBD oil (also mentioned in another reply on this post), something I'm going to keep a close eye on at the moment.

[Lucycord123 in reply to edfosho]

Yeah I've had it a few times but I'm going to get it again and stick to it. So did your family have SCA?

Lucy

[Barry25 in reply to Lucycord123]

Hi Lucy just a quick note, to say that I have been on Amitriptyline for about a year and a half, I find it a great help I take two 10ml tablets before bed and I seem to sleep like a log (no pain) but everyone is different, give it a try works for me, good luck

[Lucycord123 in reply to Barry25]

Thank you so much for the advice Barry 😊xx

[wobblybee]

Hi Lucy🙂 Earlier this year I was at my wits end trying to cope with pain...An Ataxia Nurse suggested Paracetamol, initially it helped but I found myself having to take more and more and it ended up causing constipation.

I knew a friend was having success with CBD Oil, and I was reluctant to ask for strong medication..so I tried some CBD recommended by a friend.This specific type of CBD Oil was effective in giving pain relief, but it had an amount of THC. Obviously this wasn’t something I wanted to continue using.

As I was looking around for an alternative (without THC), my daughter suggested trying a specific brand after she’d heard recommendations.

At the moment I’m into my 2nd bottle, and seeing positive results, without any side effects. It isn’t cheap (like Holland and Barrett) but I’m pleased with the results.

I’m not suggesting anyone takes CBD Oil, I’m just relating my own experience. And obviously not all brands are suitable for everyone.

There are Clinics in the UK where it’s possible to be given a private prescription for Medicinal CBD Oil, there has to be a consultation with a Doctor beforehand, both the consultation and prescription are very expensive.

Apart from that, if your local Hospital has a Pain Clinic you might find advice from there helpful.

[Lucycord123 in reply to wobblybee]

Hey,

Thanks so much for your reply. I'm going to restart CBD Oil and stick with it. I'm also tremoring alot more right now and it's getting me down abit.

Lucy

[BlanketTime1 in reply to Lucycord123]

i second cbd. i wasn't sure it helped until i ran out of it for a week and then i could tell the difference. unfortunately, i've yet to discover a combination of medication that removes all the pain. it's more like the meds take the pain to a manageable level so i can coexist with it.

[Lucycord123 in reply to BlanketTime1]

Yeah I agree. Thank you for your response.

Lucy

[wobblybee]

🙂 I hope you find something suitable..I don’t have tremors so I can’t comment on whether CBD would give relief.

Some people find Botox helpful for Tremors..

[Lucycord123 in reply to wobblybee]

Botox really? I get it in my head lol where abouts do you get that to help with tremors do you know?

[Jingle1967 in reply to Lucycord123]

Your local Hospital should run Botox clinics. Mine hold monthly clinics. I attend every 3 months as the Ataxia has caused me to suffer with Blesparospasm, which causes involuntary closing of the eyelids. I have Botox injections around my eyes, and it stops it. I think you have to be referred by your GP or Neurologist. Good luck

[Lucycord123 in reply to Jingle1967]

Thanks so much

[wobblybee in reply to Lucycord123]

🙂Speak to your GP.

Botulinum toxin (Botox®)

Botulinum toxin injections have been useful in the treatment of some patients with head and voice tremor and sometimes hand tremor. The toxin must be placed into target muscles by a trained specialist and repeat injections will be needed approximately every three months.

essentialtremor.org › resource

[Lucycord123 in reply to wobblybee]

Thank you so much

[paul456]

Hi Lucy

First of all let me say that it’s fantastic and very commendable that you can still work especially as a social worker as it can’t be easy, so good on you. We used to be foster carers so I know the value of the work you all do.

I’ve took pregablin for the last two years on the lowest dose but think I need to up it as my pain is getting worse. As far as I know only a Neurologist and a pain management clinics can help, Neurologist for the medication and pain clinic for whatever they do.

I must admit I’m not a big fan of a lot of vitamins as you’re never really sure what effect all of them together are having on the body.

I’m not a great pill popper if I can help it.

I think maybe have a good luck at what you take and come to a conclusion if it’s all necessary seek professional advise if you think it wound help.

All this is not easy but your never alone you have a lot of people on this website.

I have SCA 6 and dystonia in my right foot so recently had to give up my hobby of tight rope walking as I found it hard to balance my walking stick on the rope Lol. CUTTED

You take care my good friend and keep up the good work.

Who Cares Wins.