Ataxia

[BobR47]

If anyone has questions about TMS or ECT, I have had a number of these treatments. Would be happy to answer any questions.

[wobblybee]

🙂 I’ve read that TMS may help chronic pain, Parkinson’s and MS, and rehabilitation after Stroke. What did you find it most helpful for 🤔

[BobR47 in reply to wobblybee]

I had over 20 TMS treatments. The first 10 were directed at my cerebellum in hopes of duplicating a study the Dr knew of. I experienced no change in my idiopathic cerebellum ataxia. The following TMS as well as 13 ECT treatments were supposed to target my depression. I did not notice any difference. I have no physical pain so can't comment on that. My depression is caused by ataxia, the loss of previous life. Like my very first psychiatrist said, there is no pill or treatment that will fix that loss. Acceptance seems impossible for me.

[wobblybee in reply to BobR47]

🙂 Thank you..It’s a pity you didn’t get positive results, I can see how helpful that would have been..

Many of us diagnosed with ataxia are familiar with depression..I have struggles, and when I was first diagnosed my Neurologist advised trying an antidepressant, which I did find helpful..

I don’t know whether I’ll ever totally accept the diagnosis (also Idiopathic), I’ve just got used to living with it, and now I find it hard to remember what I used to be like before ..

[BobR47 in reply to wobblybee]

Transcranial Magnetic Stimulation Therapy-TMS and Electroconvulsive Therapy-ECT.

[wobblybee in reply to BobR47]

🤔 Personally, I’d be wary.. My initial symptoms were linked to Epilepsy, and I’d worry something could be triggered..

[Di01 in reply to wobblybee]

Ive been put forward for this treatment but im scared it'l cause more damage my brother has epilepsy and ive been suffeeing since going thru menopause with pain everywhere and headaches and emontional stress now ive got ocd picking skin disorder tried meds but get really bad side effects

[BobR47 in reply to Di01]

My treatments were for depression. Then I was supposed to be able confront my ataxia--no treatment, no cure! Guarenteed to get worse and it has. Don't have any desire to accept this.

[wobblybee in reply to Di01]

😕 It’s a dilemma when you can’t decide whether to try something, and worry it may make things worse..I’ve got problems with eyesight and brightness, so cataract surgery may be tried eventually..But, due to a longterm problem it could actually make things worse..

[Di01 in reply to wobblybee]

Yes very frustrating when u just want to feel better and all everything u try just turns out useless

[ww-wibblywobbly]

sorry but whats TMS and ECT please?

[BobR47 in reply to ww-wibblywobbly]

Transcranial Magnetic Stimulation Therapy-TMS and Electroconvulsive Therapy-ECT.

[wobblybee in reply to ww-wibblywobbly]

Transcranial Magnetic Stimulation (TMS) is delivered to the brain by passing a strong brief electrical current through an insulated wire coil placed on the skull.

agliotilab.org › facilities › tra...

There are 6 studies related to tDCS and Ataxia

See clinicaltrials.gov

[Di01]

Hi rob how did u find out you had ataxia ?

[BobR47 in reply to Di01]

Started with PCP and erratic walking. Then to neurologist and many tests. Blood, brain MRI, CT scans, Spinal tap, cervical spine surgery, 2 second opinions, and more. Idiopathic cerebellum ataxia is diagnosed by eliminating everything else and paying attention to the symptoms.

[Di01 in reply to BobR47]

Rob i'm so fed up i've been on different meds and felt worse off them its like nothing is working i had a mri brain scan and got told my brain looked fine and he waffled on about a chemial inbalance meds just dont seem to make me feel any better giving up hope really think its impossible to over come wgat ever is going on i suffer in pain to mostly leg arms shoulder neck i dont kno why i didnt get a eeg or spinal tap or not even a mri on my back eventho my nervous system is always on high alert shocked it feels people keep saying the meds will work but none have up to yet abd its frustating living with it so empty mind body and soul

[wobblybee in reply to Di01]

🤔 Does your Neurologist specialise in Ataxia..sometimes it can make a big difference to their attitude. The person who diagnosed me actually specialised in MS, and he asked if I’d like a 2nd opinion from a colleague who specialised in Ataxia. I went on to be seen by Specialist Neurologists at an Ataxia Centre, and from there had a referral to another Hospital, and yet another Neurologist. I’ll admit it hasn’t actually made any difference to my diagnosis, or progression, but I’m glad I had the options..

[BobR47 in reply to wobblybee]

Yes, she is a movement disorder specialist. The first neurologist I saw made the consult with her.

Also, a second opinion at Univ of WA in Seattle and at Baylor Medical Univ in Houston, TX, both with ataxia specialists.

[BobR47 in reply to BobR47]

Saw you question on my email, cant find it on the website. My psychiatrist prescribes the Venlafaxine, supposedely for depression. I had a couple of flitatations with suicide this past summer. It replaced Prozac. They all make me feel like a zombie, hate it. Decided to stop them all. No pain problems now but if that happens or when I can't wipe my own ass, I'll figure something else out.

[Di01]

Im not sure and 2nd of all id love to have another opinion sick off it feels like i'm going around in a circle taking meds every few wks different ones and none actually working my brain just feels so odd and my body just keeps causing me pain even on pain meds they have put me on nortipyline but it dont take my pains away they have said its fnd which i dont believe them its that!.. these nortripyline are suppose to cure headaches to but im getting headaches and becoming an emotional reck drs just like hey go home try a different med and hoping that they work 🤨

[wobblybee in reply to Di01]

I’m suspected of having Episodic Ataxia, and one of the types is linked to painful migraines, I know some people struggle with pain relief. As it happens, my symptoms have been basically Vestibular, but I can’t get any relief with that either.I’d had ataxia symptoms for many years when pain eventually kicked in..I haven’t asked my Neurologist about pain relief, mainly because I haven’t read many posts where anyone would recommend a medication.

The most effective relief I’ve had has been by stretching the painful muscle.

It can take a few weeks for the body to become adjusted to coping with a medication, and during that time a certain amount of disorientation can occur, I’ve experienced it. It’s possible that your body is just not coping well with constant changes in medication..🤔 But..in the end we have to put our trust in Neurologists...

[Di01 in reply to wobblybee]

I'm at my wits end all meds do to me even small dose as in 10mg they give me major headaches shaking tremors heartburn stomache ache emotional crying spells then i get angry and tiredness my body just goes down hill i'm sick of feeling so horrible i really want to kno why all these anti dressions fo this to me!..4 days in to any meds and thats what im like feel like i dont have any stregth left in me everyone says keep pushing forward but they dont ave this where meds really give out same sysmptons i missed my dose last night of nortipyline eoke up dizzy and really tired wondering if my meds r doing more harm than good

[wobblybee in reply to Di01]

Is it your GP, or Neurologist, who prescribed the medications.. Can you make contact and explain that you are finding side effects are making you feel worse..

Copied from nhs.uk

If you take nortriptyline to treat nerve pain, it usually takes a week or so for pain to begin to wear off. You may start to sleep better at night.

If you take nortriptyline for depression, you may start to feel better after a couple of weeks. It can take 4 to 6 weeks until you feel the full benefits.

Do not stop taking nortriptyline after 1 to 2 weeks just because you feel it's not helping your symptoms. Give it at least 6 weeks to work.

[Di01]

It was my neurologlist but they just chuck another one kinda med at me that will do same started to think my body isnt able to take any anti depressions that means im always going to be suffering