What medication are people on … what is it supposed to help with… does it work… etc ?
Ive only been prescribed Baclofen (which i hardly take) & Vitamin B6 & B12, but i am now finding it dificult to consontrate and get up in the morning. I have very low energy and no ‘get up & go’ in me at all, plus my balance and walking (well, standing up as i call it), are getting worse.
Ive been trying to get medication to help with the above for over a year now (to be one step ahead of it, pro active), before its too late, but have had no joy from my MS Nurse or GP. Now the problems are here (which could have been prolonged), what medication are people taking so i can research them and see if they will help me & suggest them to my Nurse before my problems get rapidly worse, rather than prolong them with medication ?
I finally gave in and started taking Gabapentin a week or two back, I didn’t really think I needed painkillers but actually, I’m a lot more comfortable, so I’m glad but sticking to a low dose.
Between the Gabapentin (2 tablets a day) and Nabilone (1 or 2 a day) I find that I can keep going for a day at work but I’m pretty lazy on the home front. I can potter around from room to room but I can’t really walk too far, even with meds. The shakiness/spasms are first thing in the morning and if I’ve sat down for too long (passes after a couple of minutes when I move) BUT the stiffness and foot drop are just so random, good stretches seem to be best bet and a foam roller on my quads.
As for balance/attaxia, I just don’t think they’ve got a drug for it! My rehab consultant said that fatigue management was key (and I never need an excuse not to sleep!). He’s prescribed me the Nabilone because of the bad side effects I had from Baclofen etc.
Take care and good luck Dave, I understand how you feel, I try not to take too many meds but have to admit that I need to take something.
Hi Dave, I am not on any medication, too scared of side effects. As i start work at 6.30am three days a week I really can’t afford to be dopey first thing as it is full on from the start. I really pay the price later on though. Legs are so sore and stiff by the end of my days work I can barely move. Thats when i am terrified of falling. No energy left. On my days off it is not quite so bad but like you have no get up and go. Really have to push myself to do something. Trouble is with me I keep telling myself to go to gp but I am such a dither I usually talk myself out of it. I convince myself the pain, stiffness etc is not that bad. Take care, Mags xx
I take baclofen for spasms and stiffness, but I can only cope on a lower dose, cos when I have tried to increase them they make me weaker. I also take amiitriptyline for neuro pain, again on a lower dose. It seems to be trial and error with all medications, but I have never been offered anything for fatigue.
Wishing you all the best, let us know what happens.
Dave, I’m no expert but it seems that medication falls into two types. Symptomatic medication and medication that actually treats the cause of our symptoms. When I was R.R I was told I didn’t have enough major relapses to qualify for preventative medication, now I’m S.P I’m told there isn’t any medication for me. I take Baclofen for muscle spasm and Propranolol for intention tremor. I often think if I had been more vocal about the effect M.S has on my life instead of just getting on with it I may have had different treatment but I am who I am. It is only since having to go sick because I can no longer work that I have discovered this forum. Best of luck I hope you find the right medication for you or not as the case may be, sometimes the side effects can be worse than the symptom. Jan
My Neuro swears that vitamin D helps neurological symptoms. I must admit that since I increased my dose too 1000iu per day (the dose he recommends) my tremor does seem a bit better. I also take Vitamin B Complex and Cod liver oil as I read that fish oils were supposed to help with cognition, but I’ve taken that for years anyway.
I take loads of pain medication as neurological pain is severe and then I need drugs to help with side effects like constipation. I have a spinal cord injury so that makes it worse. I also have an anti depressant, so my meds are given for specific symptoms. The only thing specific to ms is the vitamins. My Neuro doesn’t believe there is much for progressive ms, and that many of the available drugs haven’t been tested over a long period yet.
Like you and most others I’m on baclofen, which I only take at night (30mg) as it does tire me out and so I avoid it during the day. My legs do spasm during the day but I just get up and walk around for a bit when that starts. I also take max strength Vit D which I can only assume is not doing my any harm.
I worry about becoming dependent upon baclofen and what the side effects may be.
Hi Dave, I take Amitriptyline for pain and calms down all the buzzing, tingling, burning which I suffer daily… and Vit D3 5,000 mg daily as recommended by my neuro. Fatigue is my No.1 symptom… well it is the most disabling. The only thing that helps is rest, rest and then more rest. Sorry that sounds depressing but I haven’t found anything that really helps. My walking is also poor although it does vary by the day… from poor to extremely poor! The only thing that does help me mentally is mindfulness… google it if you want to know more. It’s basically a way of practising to ‘live in the now’… embracing positive thoughts and letting go of negative ones. I know that make me sound like a new-age hippie and believe me I’m not but was desperate to find a better way of responding to MS and it is helping me a lot. Pat xx
Pat I don’t know why you’d worry about being thought of as a “new age hippie”! I no longer care what anyone thinks of me, what works I continue with and what doesn’t goes by the wayside. People too, I can’t be doing with spending all my time with people who are always moaning and negative - we all are allowed a rant or moan but I’m talking about those who leave you feeling both suicidal and homicidal. I’m not in great health as are you all but we have a quality of life, I have a relation who thinks of nothing besides her woes and every ache or pain has to be fully investigated and because I was a nurse I’m the only one to phone and it can take hours.
She asks me about every symptom of ms she can find as because a great aunt had it and so do I, all the females in the family must have it, especially her. It’s extremely painful and sometimes her name comes up on my caller display and I dither wondering whether I should slit my wrists before or after I take the call. That is something none of us need. I think I’ll print off your Mindfulness and give it to her xx
Hi Pat, Like the sound of mindfulness. If that’s being a “new age hippy” bring it on. How awful for you Cath. We don’t need negativity in our lives. I know when I am stressed my symptoms get worse. Must tell my eldest daughter. She got rid of her “waste of space” of a partner 2 years ago and he is still giving her grief. Hence he gives me grief too!! Soon to be chilled out Mags xx
Pat, I’m sure that mindfulness is a good avenue to explore, and my understanding is that it emanates from Buddhist teaching, nothing ‘new age hippy’ about that. I only came across it myself last week when I met a friend from the village (at a funeral, but that’s another story) who has had RRMS for years. I used to work with her when she was first diagnosed, and it was the usual thing, there was nothing to show she was ill, except I knew she suffered from fatigue. Anyway, not having seen her for some time, I was shocked to see how she had declined and how much pain she was in. I felt a kinship with her, and we seemed to raise our friendship to another level of understanding: us against the world! ANYWAY the point is, someone else mentioned mindfulness and thanked my friend for putting her onto it, and the discussion set me off to investigate it a bit. It reminded me of Cognitive Behaviour Therapy, and it turns out there are strong links between CBT and mindfulness. But by 'eck it is difficult to focus on practicing it when you feel rubbish!,
Dave, my only PPMS related medication is baclofen and gabapentin. I’m only on a small baclofen dose because it is hypotensive, I have a tendency to pass out if I get too low BP. I gobble paracetamol as well when things get heavier. Seems to be enough for me at the moment. I was already on Vit D before I was diagnosed, my levels were down; haven’t been out much to get any sunshine since I had cancer four years ago. Also on sodium supplement because my levels drop with that sometimes. But my neuro said there’s nothing to actually combat ppms, just the drugs to ease the effects. A friend told me of something on the radio the other morning about a new drug for MS released to the NHS by scientists in Cambridge. Anyone know anything about it? Might it help us, or is it an inhibitor for RRMS? Kev
I don’t suffer from pain or fatigue so I am not on any medication but I am seeing a physio who has set me exercises to do at home that strengthen my core and help my balance. They are working, I had a very positive review with my physio this week and he has changed my routine. The old one can be done away from home as it requires no equipment but the new routine uses one of the exercise balls that you sit on.
Kev, there was something this week about a new treatment for RRMS, given in two courses a year apart, that has just gained approval from NICE. I haven’t heard of anything for PPMS yet. My neuro said the same as yours: at the moment there are only treatments for symptoms, there is nothing against the PPMS itself.
Hi Dave, I have PPMS and I am on Ampyra, to help walk better. Baclafen for a muscle relaxer. Provigil for fatigue. And they all help! Going on 9 years and still walking for the most part. In the evenings, I use my 3 wheel walker and if I go shopping at the mall or elsewhere with no grocery cart.
