I am fairly new here and have tried to go back through older forum posts so I don't repeat questions already covered - I can't get the search feature to work.
Some older posts referenced different meds here and there. Can you tell me which medications you have tried and if they relieved any symptoms or not?
The doctor put me on Amantadine for about 4 mos. It is a Parkinson's drug and for the first 2-3 weeks it did seem to take some of the foggy feeling away. But the longer I was on it, I started to deal with unpleasant side affects. I asked to be taken off.
They also tried B-12 infusions( a little more energy) and prednisone - no affect.
Please tell me what you have tried - successful or not.
Every case is different, my neurologist put me in vit. E 1000 mg, vit. D 800 mg. and others, COQ 10. I admit I feel better than before. but this is progresive condition. Stay Strong.
I am prescribed Baclofen for muscle rigidity and spasms .. I only take them in late afternoon as I don't seem to need them until I settle down on my recliner. I cope well enough when I am pottering about.
I also take Co-Q10 in the mornings along with calcium, mult vits/mins, multi B, vit c and omeprazole [for tummy].
I have stopped statins and aspirin and nose bleeds have stopped.
I have been taking various vitamin and mineral supplements for more than 30 years .. you need to know your body to recognise your needs. Worth reading about it.
I'm 73 this month - hooray - and have been overtaken by age-related bits dropping off! Having ataxia as well makes things a tad trying. But I have a v patient husband who picks me up when I fall (frequently) and retrieves kitchen tools when they fly through the air.
I have tried Baclofen - if you take too much your lids wont shut :others I'm afraid I can't remember. At the time they were prescribed I believed they were working.
Now in a different phase of life so just endeavour to remain calm. To this end I take Amitriptylene, Quinine, Citalopram, stuff for my tummy, Glucosamine, stuff for sinus but no vitamens. One of the more unpleasant things is heavy perspiration. My lovely neurologist tells me my auto-somethings are buggered!
Hi Cynders, Not to worry if you ask a repeat question! Ask whatever you'd like! I take over-the counter things for my ataxia only. Personally, I'm leery of prescribed meds, as I'm sensitive to side-effects for some reason. I take a couple meds for other health problems, and that's enough for me. I take a multi-vitamin, vitamin D (1000 mg), CoQ10 (600 mg/ 300 am, 300 pm-per my neurologist), vitamin B-12 (1000 mg), 1 flax seed cap, 2 fish oil caps, 81 mg aspirin and a probiotic cap (pm). My neurologist has asked me about trying a couple different prescribed drugs, but I prefer not to, as one causes sleepiness (I already deal with excess fatigue with ataxia...,ha!), and another is toxic to the liver. I'm sorry I don't remember the names of these?! Make sure you check with your neurologist/doctor before taking anything please. My best to you..., ;o)
I am on diamox 250mg twice a day. It has helped with the frequency (I have episodic ataxia type 2) and intency of my episodes. It has very little side effects for me. Just tingling in my fingers and toes. I’m not fond of taking a meds but have tried verapamil and topamax neither did anything for me. I do take vitamins that others have mentioned below but am still fatigued. So take my time doing chores and rest when needed. Hope this helps you. This is a great place for help and advise
I am currently diagnosed with CMT with ataxia symptoms. One neurologist calls it idiopathic neuropathy. Wish they'd decide what's wrong with me so I would know which support group to post in!
Anyway, I take Lyrica for nerve pain, along with Cymbalta. I took Baclafin for muscle spasms for years, but they changed it to Tizanidine for reasons I never understood. I also take Amantadine, but I take so much stuff I'm not sure I'd know if I had side effects. I take Meloxicam for bad cervical arthritis, one of the statins because one doc thinks I have had a stroke, and both Klonipin and Ambien to sleep. I also take Tramdol ER for pain each day.
On the vitamin side, I take D and a multivitamin. I take a baby aspirin. I take fish oil, alpha lipoic acid (for nerve pain), chondroitin and glucosamine. I've never tried Coq10, but I might.
Anyway, as you can see, I take everything for CMT as well as a few things for ataxia. As I said, this probably will be of no help whatsoever since I don't know my disease. But here it is for what it's worth!
Sounds familiar but I’ve made it to 81 … 82 next month! I’m in manual wheelchair indoors.
Cant reach surfaces in kitchen so I’m banned. I only take pregabalin, blood pressure drugs and vit/mineral sups.
The main difference is that my husband isnt strong enough to pick me up, so I have to scoot on my bottom to bed and we make a joint effort with aid ov bed rails.
Hubby has Parkinsons.
Good luck x
I find that vitamin D3 does help keeping the bones stronger. I fallen quite a few times over the years on some pretty hard surfaces and thank heavens not broken a bone. I take 4000 IU daily. One 2000 in the morning and another 2000 in the evening. I’ve found that nothing helps with the Ataxia unfortunately. But I’m always open to new things!
Hi Chas
My consultant checked me foe vitamin D deficiency. Whilst waiting for results I thought I’d be clever! and take vit D tablets. When she sent me the results she asked if I was taking supplements as I was on the high side - so no more for me.
According to Google you are on the maximum dose which can cause side effects .
Google might say that 4000 is the maximum dose so why is 5000 produced? The NAF does not say that 4000 is maximum but you are correct in saying that over dosing can cause problems. We have an abnormal health condition so 4000 is suggested but you don’t have to do 4000 everyday. It is suggested by health experts that vitamin d3 is important for various parts of the body. Vitamin d3 is created outdoors through sunlight and certain foods but during the Winter months we are not outdoors in sunlight so a supplement might be necessary. Nevertheless, thank you for your post.
WHATEVER, ALWAYS TALK TO YOUR DOCTOR FIRST BEFORE TAKING ANYTHING!
