60 Comments
Sep 29, 2021Liked by Gavin Giovannoni

Thank you, thankfully not on any of the drugs listed on the website. MS has taught me to question every medication and learn as much as possible about positive and negative effects. It's very difficult with no medical knowledge and such diverse opinions amongst medical professionals but worth the effort, so we can at least momentarily think we're in control of our own destiny, even if this is illusory.

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Sep 29, 2021Liked by Gavin Giovannoni

Hi I have been taking 75 mg long term just worried now what do advise

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Sep 29, 2021Liked by Gavin Giovannoni

Really interesting article. I was on amitriptyline for 6 years but have now stopped.

Prof G, you mention the risks of PWMS taking anticholinergic drugs - I am on Mirabegron having stopped solifenacin after reading a previous article of yours. The mirabegron is not as effective unfortunately - how does Trospium compare on the anticholinergic scale?

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Sep 29, 2021Liked by Gavin Giovannoni

Amitriptyline was prescreibed for me for my Trigemenal nerve pain recently. I have thankfully stopped that now and have been prescribed Pregablin.

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Sep 29, 2021Liked by Gavin Giovannoni

Wow ! I was prescribe amatryptiline by GP who I have never met, over the phone because I had sciatica. I declined after reading about it. I did a lot of Pilates and waited for it to go. It took much longer but it went. What are your thoughts on Baclofen. I have quite a bit of stiffness at the moment due to a relapse and it's getting to me as it's been going on for weeks. I haven't seen my neurologist for 2 years been offered Siponimod but everything has been done via letters. Waiting to take tests.

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Sep 29, 2021Liked by Gavin Giovannoni

Yes, for more than 5 yeras. The reason is migraine, but also some form of dermatitis and itching for which no one has determined the cause. It is strange that it is reduced by antihistamines, but also by amitriptyline. A month ago I started to think it was really time to stop using it.

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I was taking oxybutynin for a while to keep from urinating too much, while also using incontinence briefs to be protected while working at an office job and when going to social functions. Not knowing that I was making things tremendously worse for myself. I was also rationing my water / fluids to lessen trips to the toilet, and any accidents, which was really detrimental for me--this was when I started developing UTIs as a fairly common occurrence. I feel such anguish and regret that I didn't have information like this at the time.

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Nov 2, 2021Liked by Gavin Giovannoni

Tingling, numbness mostly left hand and spasmodic pain. Tingling in spine and occasionally pain in face.

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Sep 30, 2021Liked by Gavin Giovannoni

Prof, a leymans question about all of these anti-symptom drugs. My nurse gives me pregablin to calm down the neural pathways. It was explained to me that amitriptiline also 'stops the messages getting through' therefore alleviating symptoms. Is this a positive though? when the CNS is trying to navigate itself around lesions and form new pathways, are we not blunting its chances by 'stopping the messages getting through'. I get muscle twitches from head to toe, mostly in my legs but sometimes completely random. Are these just lemming messages walking along my broken neural pathways? makes me wonder if i avoiding the inhibiting medications whether more would survive = less twitching!

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Sep 30, 2021Liked by Gavin Giovannoni

I wish I could afford the subscription

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Sep 29, 2021Liked by Gavin Giovannoni

That hardly counts as a dirty little secret. Psychiatry is full of really dirty secrets. Historically trephining was common. Electroconvulsive therapy used to be common and has only fallen out of favour in the last 25 years. During medical finals I presented a long case to examiners. I explained the paranoid delusion that the patient believed they had been rendered comatose for months at a time. She reported that Psychiatrists had deliberately given her overdoses of insulin to achieve this. I added incredulously that she even called it, “deep insulin”. The examiners looked extremely uncomfortable. They reluctantly admitted that this was a treatment that the patient had undergone for depression. I had misinterpreted the case completely through naivety and a belief in ‘premium non nocere’.

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Sep 29, 2021Liked by Gavin Giovannoni

Having read the list, and description of Tizanidine I can't tell if it too is one to avoid if possible. Would you be able to clarify? Thanks very much as always

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Sep 29, 2021Liked by Gavin Giovannoni

the trouble is when you have terrible nerve pain - but need (and want!) to keep going in life with work/kids/dog/driving/walking a bit - and you've tried all the others. I gave up amit when my children were younger as I needed to be awake in the night for feeds etc. Now I can take it and it helps with the pain. Duloxetine - no thanks - hallucinations and also not fun when you have a drink on it!! (or too much fun lol). on pregablin and baclofen and tysabri as well

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Sep 29, 2021Liked by Gavin Giovannoni

Been on it probably 8 years. Originally thought that it would cover a multitude of symptoms including TMJ syndrome which I have had since I was a child, facial neuralgia and leg pain. Over time I have noticed difficulty peeing especially first thing, also think it's responsible for night terrors and bowel changes. But can't persuade MS nurse that it needs changing, tried to wean myself off it but can't get below 20mg without the facial neuralgia and leg pain causing issues. Doesn't really help the TMJ syndrome. Now 23 months since I saw Neuro last.

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founding
Sep 29, 2021Liked by Gavin Giovannoni

That side effect list reads a lot like MS in a pill...

I really like the medication posts, would love to read about the anti spasticity drugs. Little of use out there 😑

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Sep 29, 2021Liked by Gavin Giovannoni

What is amytriptaline prescribed for inMS and other settings?

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