In need of advice

Hello,

I am desperate to get my life back.

I was here a couple of years ago when my symptoms first started but had fortunately managed to make huge improvements without any major lifestyle changes and no medication. I was extremely unwell from Dec 2019 until around October 2021. My symptoms have never gone away fully but I learnt to live with a baseline dizziness which would sometimes worsen but always ended up settling back down. I’ve managed to go back to work full time (previously lost my job and couldn’t work) and have been back to lots of normal day to day activities. Being ill was a thing of the past.

During the first bout of symptoms, I saw multiple doctors who in the end all agreed I was likely to have been/ be suffering with chronic VM.

My symptoms have come back in full force in the last 1-1/2 month. Everyday I have a torturous level of dizziness which feels like spinning inside my head. It’s so bad I feel like I will pass out 80% of the day. I used to feel better when moving but now it never stops/feels better. When I walk I can still feel the spinning sensation but never lose balance. Somehow I’m managing to keep going to work but my days consist of getting up, going to work and then coming home to bed. I’m lucky to have an amazing partner who I live with and he is the just the best support system. I feel huge guilt for being so unwell. We’re 25 and I can’t help but feel that he’d be better off with someone he can go out and have fun with.

I have always been extremely nervous about medication but I now feel there isn’t any other option. I can’t go back to being housebound & having to give up my life. I spoke to my GP who’s given me prochlorperazine to treat the acute vertigo. I’m seeing him again on Monday to figure out a treatment plan.

This 24/7 spinning dizziness sensation is awful and hasn’t settled for at least a month. It’s becoming mentally draining and causing me a huge amount of anxiety. I fear that I will never get better.

I know I need to take action but I am quite nervous. I guess I could do with some reassurance/advice on where to start to try and get better. Plus, does this sound like VM to you? I saw Dr Surenthiran but have seen some mixed reviews since. Also, has prochlorperazine eased vertigo/spinning dizziness for anyone?

Hi

You sound a lot like me, nervous about meds because of side effects. In fairness I’ve tried many of them in the past for Fibromyalgia which I also have. So its not like I’m dismissing them out of hand. I seem very sensitive to medication and many drugs dont suit me.

But you sound like you really need something to help you. I tried stemetil, the medication you are asking about. It may have helped a bit but its more usually used as an anti nausea drug these days. I’ve known it prescribed to combat migraine nausea or for those having chemo. I dont think its used as much for dizziness anymore.

Its ok for the short term but isnt designed for long term use. I had two lots prescribed and then my surgery wouldnt dispense anymore. I found a bit of relief with Betahistine but its not a MAV medication, used for Menieres. I’ve tried Sertraline, Amytriptyline and Nortriptyline but found the side effects too much.

I’ve had balance issues since April and the ENT doctor confirmed vestibular migraine just this week. So I’m now weighing up treatment options. I would ask to be referred to a migraine specialist like a neurologist. As they have access to treatment that GP’s dont (if you’re in UK).

I was prescribed prochlorperazine when my symptoms first started over 3 years ago after being given a few other nausea meds first. For me, it was the first medication that helped and gave my GP the idea to refer me to ENT, and then from there to an Otoneurologist. Like you, I am not keen on medication and tried for a long time to manage without. A covid induced relapse changed that for me and I now take Betahistine and Amitriptyline. The Ami for me doesn’t work effectively enough by itself and I need the Betahistine to give me a better management of symptoms. I don’t want to take meds long term but I am better than I have been in a long time - even another mini covid relapse didn’t derail me as much as I had thought, although I did need steroids to help me through it. So I am resigned to taking medication for as long as I need it. I now also see a Neurologist and my vestibular rehab physio so it’s a continued lifestyle management on top of the meds. Hang in there and do push for an onwards referral as things can and do get better - so hard when you’re in the middle of it all x

Hi there, so sorry to hear about your relapse. Never fun!! And so very debilitating- good on you for still working.

Regarding meds, I think you should go for it. You might find through trial and error you improve - and for longer.

Medications have side effects - some worse than others. The thing is, one medication might be easily tolerated for one, and horrendous for the other. It’s really up to your body’s make up.

For me, I tried propranolol without success. Side effects proved too much - however tried pizotifen next and it worked brilliantly without too much hassle at all. I’m now taking Ajovy only.

Try not to be scared about medication. I know it’s daunting. You might need to take some time off work when starting if you can? Seriously, anything is better than spins, vomiting and constant dizziness. Trust me!

I wish you the best of luck
Bel