u/Deviprincess

Does anyone sometimes have a full body tremor? Sometimes I’ll have an “attack” (usually in a social situation) where my head, neck, arms, hands, trunk and inner thighs all tremor at once. It’s quite distressing and destabilising

On Friday I had Botox for the first time (NHS UK) in my neck for my head tremor. The very next morning I could feel a difference! Now, less than 3 days later, there is an about a 65% reduction. The relief is unbelievable. No side effects even though I’m sensitive to everything!! Just a bit of muscle stiffness. If you’re on the fence, I’d say give it a go!! I’ll keep updating. Obvs rest of my body still shaky!

Finally made it to see a neurologist on the NHS (I’m in the UK). He popped 2 Botox injections in the semispinalis capitis muscles and said he’d send me an appt for three months time. The aim is to treat my head tremor.

Watch this space… 🤞

Thank you everyone for all your reassurance as I was so nervous about getting Botox in my neck.

It was a strange experience, no imaging, no advice or info. The consultant neurologist sat me on a chair and just injected it. Two 25mg injections, I was in there for less than 5 mins. There was no pain, no sting. Just got home and will cook now….hope it works!!!

Hello, Im only on a 10 mg propanolol and I take it as and when (usually on social occasions or if I’m working with somebody tricky). So perhaps I take it around four times a week.

I’ve started to notice how awful I feel once it’s worn off. After it’s worn off my tremors are much worse than before I took it. Plus, I feel headache, achy tired and a bit sick for the rest of the evening.

It works amazingly though for those four hours but the after effects are making me think is it worth it?

Does anybody else have these after effects?

Hello! Has anyone managed to get a GP who does shared care with a private provider?

My 17 yr old has an NHS diagnosis but can’t get meds under CAMHS before he’ll be discharged. Camhs doesn’t have continuity of care they will refer him to adult adhd services where he’ll be placed at the bottom of the list (7 year wait)

RTC in Manchester for adult services is now 12months-2 years

Our GP refuses shared care with private provider

Any advice appreciated or if you know of a GP practice in South Manc who does shared care with private providers that would be great!

Hi, I’m due to have Botox for the first time in a few weeks and I’ve been given no info except they will inject the splenius semispinalis and suboccipitalis muscles to help my head tremor.

The appt is on the NHS in a movement disorders clinic.

I’m petrified of- swallowing difficulties, pain and a heavy head. I’m extremely sensitive to medication and other things like vaccines.

Can any one offer anything here- truthful experiences/opinions or even reassurances? I’m really on the fence.

I do have some health anxiety. I took Topirimate (half tablet, around 10mg) for 1 week and decided to stop because the memory loss and brain fog became more severe on day 6 and I was driving and forgot where I was going 😭

So my last dose was on Tuesday night (it’s now Thursday night) and I’m still feeling foggy and confused.

Anyone who came off Topirimate, did the fog go away quickly ?

Help please!

My 17.5 year old has just been diagnosed with ADHD via CAMHS. He wants to start medication but they say it’s a years waiting list and he’ll be discharged on his 18th birthday so he’ll need to be referred to Adult services by the GP.

GP has said they will refer to adult services but think the wait will be very long.

We can go private for medication but our GP said they will not do shared care for any private prescriptions. Has any one else’s GP refused shared care, is this a common thing?. I’m worried for my son as he’ll be re-starting 6th form again in Sept (he didn’t manage to complete last year) and he would really like to get started with something.

Thanks in advance

Hi, I’m in Manchester UK and my 6 tomato plants have only just started to flower (planted seeds indoors in March!). Is there still hope for getting some fruit?

In 2025, I had 2 accidents - a heavy loft ladder fell on my head and then a few weeks later I very badly sprained my foot and ankle. About 2 months later I developed frightening symptoms of extreme sensitivity to tiny sounds leading to my whole body jumping with small sounds. Then I developed a head tremor and my childhood stammer came back to the degree I couldn’t get a full sentence out. I have recently been diagnose FND and am wondering if FND is a pain reaction or could it even be chronic inflammation?

As the title says, I have the random day of feeling normal when my nervous system works! Unfortunately I spend the day trying to analyse what I’ve done differently, but coming to no conclusion. It’s making me wonder if my FND comes in like storms and then Peter out? Then I land a respite for a day before it starts up again?

Hello I’m interested in knowing progression of ET. Mine started 9 years ago in my hands and didn’t really bother me. The last year I suddenly got a head tremor (that does bother me) and a tremor in my trunk and legs! Maybe I’ll get another big jump up in 9 years ? 😭

Hi I have essential tremor, tics, migraine, stammer and RLS. This week on top of these I got diagnosed with cervical dystonia and FND. Anyone else have an array of neurological interestingness?