After leaving my neuro appointment ( see previous post by me) one thing played in my mind.
I forgot to say in the the last post he’s now prescribed me toperimate for my headache and warned me of side effects, some nasty ones!
He also asked me if my bad fatigue (much worse than normal) had started when I started taking baclofen, I said I didn’t know. But the more I think of it it could well be.
I’ve read some of the side effects of baclofen and they include fatigue and headache, which I have been suffering badly with for the last 6 months.
I started baclofen last June/July at 10mg per day, gradually went to 20mg per day, then 30mg per day, but cant remember exactly when that was.
If the baclofen is causing this extra fatigue and bad headache then it’d make sense to try and come off the baclofen wouldn’t it?
I’m going to try, so yesterday I went down to 20mg per day, which I’ll do for a week, then reduce to 10mg per day for another week, then stop them all together. (I am going to see my go next week and do it under her supervision)
I know my leg spasms will come back, but if the fatigue and headache go away then I’ll know it was the baclofen. So I guess then the decision would be which is the lesser of the two evils.
If the fatigue and headache don’t go away, then at least I’ll know its not the baclofen.
I’ve got try haven’t I?
Have any of you had severe fatigue or headaches with baclofen?
X
Hi Jules, I’m having the opposite problem! I’m sure my fatigue is NOT due to baclofen, but my neuro keeps trying to blame it. I went to the doctor, who checked my notes, and it was quite clear I’d been complaining of fatigue before I ever started it. Personally, although you’re doing it a sensible way, by weaning, I don’t think it’s a good idea to stop the baclofen with nothing to replace it. Why don’t you discuss with the GP your concerns that the baclofen might be contributing to fatigue, and see if you could switch to an alternative? I don’t think I’d manage at all well without baclofen or a baclofen substitute, even if it was PROVED to be causing my fatigue. I feel I’ve done very well on baclofen, for the last two years, but I’m just getting to the point now, where I think it’s no longer working properly. My neuro is already unhappy with the dose I’m on, so I don’t think I’m going to get the green light to go higher. I reckon I’m going to be seeking an alternative soon, as well. Tina x
I think you are doing the right thing. Be careful though, coming off baclofen can cause side effects too! (5mg reductions each week may be more gentle than 10mg?)
I asked on your other thread about what the neuro had offered you for your migraine - I see now it’s topiramate. The major side effect I was warned about with that was possible weight loss - so I couldn’t wait to try it!!! Unfortunately, it caused me to have some weird visual symptoms (not glaucoma which is a known risk) so I had to come off it pretty quickly so no pounds dropped 
I was advised by a headache specialist neuro to try 400mg vitamin B2 instead and it’s worked a treat (for anyone reading, build up the dose slowly and don’t panic about your urine becoming bright yellow!). If that didn’t work, I was to increase my pregabalin as that also works as a migraine preventative (other neuropathic painkillers do too) and if that didn’t work there were three or four other things we could try. The moral of this waffle is that, if coming off baclofen doesn’t work, there are lots of options!
Karen x
Thank you for you comments.
I understand what you’re saying Tina, but I think I need to be medication free so I can be sure what are my symptoms and what are because of drugs.
If the baclofen is the cause, then I suppose I need to weigh up which affects me worse. Fatigue & headaches or spasms. And also try and alternative treatment maybe? If I discover baclofen is not the cause, then I’ll be happy to restart the baclofen to control my spasms.
The fatigue I’ve had over the last 6 months have stopped me doing pretty much anything normal. I was a self employed photographer and had my own studio and had to give it all up and I’m gutted. I can’t even go shopping now without feeling completely wiped out and ill.
The spasms (I can only go by what I had before baclofen, as I don’t know if they’re going to be worse when they come back!) were very annoying and painful and embarrassing, but they didn’t stop me from going shopping or working!
I think I need to do this experiment for my price of mind.
X
Thanks Karen,
I went up in 10mg’s so I thought going downs in 10’s would be OK, but today, (2nd day at taking 20mg) feeling quite ill!
The side effects to the topiramate are awful aren’t they!! I think that’s why I want make sure my headache isn’t a side effect to the baclofen before starting it! Nice to know there are alternatives too.
The thing is with my headaches, I do get occasional migraines, but my neuro has insisted I have chronic migraines, even trying to explain to him I don’t get that many, he tells me my nausea and vision problems are migraneous. I’ve never really agreed. I believe the criteria of chronic migraine is 15 per month. I probably get that a year normally.
The one I have now started last august with a terrible migraine, much more severe than I’ve ever had before, it lasted over 2 weeks. Classic migraine symptoms. When it went away I was left with this horrible dull ache on the right side of my head, with lots of sharp stabbing pains daily, sometimes the pain stretched behind my eye or even down my face to my jaw. And that has carried on ever since. It just doesnt feel like a ‘migraine’. But my neuro just isn’t listening to me! I’ve had one other classic migraine since august. Strangely, even though I have pain there all the time, I can tell the difference between different headaches at the same time, if that makes sense?
Do you have chronic migraine? Or suffer with lots of headaches?
I wish there was something simple about this illness!!
I used to get occasional migraine and once had a migraine that lasted a month (by my reckoning, a relapse), but in 2011 a few doses of Fampyra (helps some people walk faster) set off some sort of weird escalation so I was getting loads of migraine with aura - several per week, some lasting two to three days. I learned to tell when they were coming on, but was taking loads of high dose sumatriptan & domperidone, so I’m really happy about how well the B2 has improved things - I’m probably down to one migraine a month now and they are milder too.
I understand what you mean about different types of headache. I still get ice pick headaches and tension headaches (plus Rebif headaches when I forget to take paracetamol!), but they are completely different to my normal migraine.
It’s always possible that the neuro is right you know - maybe it is a new form of migraine? Hopefully it’s the baclofen and you’ll be able to switch to something else instead, but if not, it’s got to be worth trying migraine meds. Your description does sound rather trigeminal neuralgia-like though… maybe??? That doesn’t explain the nausea and visual problems though - and they are common in migraine.
All very confusing
I don’t suppose you’re near London are you? If you are, the headache guy I saw was brilliant - maybe you could get a referral to him and see what he thinks? Maybe you could do that even if you aren’t near London?! Especially if this new referral doesn’t pan out… All depending on the baclofen experiment mind you.
Kx
Thnaks Karen
Yes, I definitely know the differences between the headaches. And I know by the aura and vision loss when I am about to get a migraine. My GP once gave me sumatriptan, but it made me head feel like it was about to explode! The pain was horrendous! Didn’t touch that one again! Domperidone helps me a lot though, although I don’t need it that often.
I’m hoping now once off baclofen, the headache will go with it… fingers crossed… if it doesn’t, then will have to re think and try this topiramate (although not looking forward to the side effects). Even if the headache doesn’t go, I hope the awful fatigue does. I mean I did have fatigue before, but no where near to this extent!
I’ve actually wondered whether this headache could be Trigeminal Neuralgia, especially the short stabs and going down my jaw… doesn’t sound like migraine does it?
I know I maybe be clutching at straws, but after 6 years of getting nowhere, there’s not much else to clutch at!!
I live in Liverpool, so lucky enough to be under the Walton Centre. I’m keeping everything crossed that the new Neuro can help me. (My current neuro said he can treat symptoms, but didn’t offer to help with the fatigue/dizzynes/ etc… just the headache?? And then I forgot to ask in the end, even though I had everything written down and gave it to him which he read!)
xx