20 months (ongoing) of PPPD, Occipital tension, tinnitus +more

New here, let me introduce myself 🤝
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Hi there mvertigo community :slight_smile:

New to this forum but would love to get some views on my ongoing symptoms. I’ll do my best to not make this a super long read.

Dec 2024 - had BPPV during the early hours whilst away for work, in a hotel room on my own. Ended up self-guiding the epley manoeuvre which stopped the spinning vertigo.

The day after this I noticed I had “residual dizziness” and a very tight neck/occipital region on my left side. I thought this would just pass and I’d recover. 1 month later, the residual dizziness and occipital tension had become much worse.

Christmas 2024: after 1 month of symptoms, I quickly hit rock bottom and honestly felt suicidal. I was convinced not being here any more was the only way out. I had talked myself into thinking something sinister was going on (tumor/ms etc). I had been to a&e for CT scan which was all clear and was discharged with amitriptyline. I didn’t take this.

Feb 2025: started amitriptyline and took for about 6 weeks before tapering off, made almost no difference to symptoms.

Month 1-6: the occipital sensations travelled upwards and dominated most of the back of my head, a strange and very uncomfortable crawling/tingling/pricking feeling. It drove me insane.

Month 3: noticed tinnitus, very strong, could hear the ringing even in louder environments.

Month 6-9: by this point I had tried physio for cervicogenic headache (little relief), chiropractor (pointless), talking therapy (ok but hard to gauge impact), CBT (via the NHS, felt like a complete waste of time). I’d also done several months of neck mobility work. Some symptoms had improved e.g. the occipital sensations had calmed a little bit, the dizziness had shifted from big swaying/unbalanced to moderate and less frequent.

Month 9-12: took SSRI (Sertraline) which didn’t really make any difference to the physical symptoms and just made me feel numb. I decided to taper off them as I was soon to become a father and wanted to experience my emotions as naturally as possible.

Month 12-20: I still have daily occipital tension on the left side, literally every day there’s tension and sensations in back of head. I also still have daily dizziness/floaty/brain fog. Been seeing a vestibular physio last few months who has focused on my jaw as well as acupuncture (occipitals and hands) which I feel had made some positive difference.

Note: I’ve had 2 balance assessments, MRI of head and neck, multiple blood tests and nothing had flagged, everything is normal.

Like many of us, we’re left to explore options ourself as vestibular problems are not really understood by the NHS or GPs. I’ve landed on the fact that my brain is in a constant loop of not trusting my balance/visual/spatial signals which is causing neck muscles to tighten. My brain needs to relearn pathways, is this correct?.. After trying so many routes I’m now thinking a SNRI is the best option. However I’m nervous about this, given how the SSRI made me feel. My little boy is 6 months old and I don’t want to be emotionally numb but maybe the tradeoff is needed.

Any thoughts/advice/insight would be hugely appreciated. Glad to have found this community, if anything I don’t feel like I’m fighting this alone anymore.

Thank you!

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Hello @Charlie! Welcome to the forum! :blush: Everyone here is really friendly and eager to help, so you’ve come to the right place. Don’t forget to read the Welcome Topic if you haven’t yet — it’s a great starting point: Welcome to mvertigo!. Also, check out the posting guidelines here: Please read this before posting.

We’re glad you found us, and you’re not alone in this journey. Looking forward to supporting you and hearing more about your experience!

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@Charlie welcome to the forum, I hope you find the site useful and I wish you the best of luck with your recovery journey! (and well done for grabbing that username :slight_smile: )

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Thank you! Is it normal to not get any replies for a while? Maybe posting my story in another group is advised?

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Welcome Charlie. I’ve been dealing with VM for a long time and, like you, have tried a variety of modalities. Unfortunately it’s a trial-and-error situation with an emphasis on error. We’re all different – the only way you’ll know if a drug (or other treatment) is effective or if the side effects are tolerable is to try it for awhile. Over time I’ve found a combination of things that work pretty well for me: medications (currently topiramate and venlafaxine), combined with lifestyle modifications (regular sleep and meals, no alcohol or caffeine, avoidance of busy/loud//stressful environments). I’ve also had some success with vestibular therapy and vision therapy.

Things didn’t start getting better for me until I found a physician who specializes in vestibular disorders. He did lots of testing and started me on medications and therapy. It was a slow process that took many months. Do you have competent medical care with a specialist? If not, that should be your first priority. Most of us who have been dealing with VM for a long time learn that you have to strongly advocate for yourself – you shouldn’t have to plan your own treatment! Do what you have to do and don’t give up. You’re not alone and you can definitely get better.

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Thanks for the reply!

I’m so determined to overcome this. Healthcare providers in the UK are as you say trial-and-error. I’m currently seeing a vestibular physiotherapist that’s working on my jaw and neck for relief as well as acupuncture points on suboccipitals and hands. I feel like it’s helped but it inevitably just symptom relief. I seem to be on a conveyor belt of symptoms relief and not root-cause solving.

This is why I’m considering a SNRI, to help severely bring down the nervous system to a calmer state and allow me to recalibrate. So many mixed views on this. I’m prepared to be on them for a long time but ideally not longer than 2 years including a taper off.

I’m also running again now (user to run a lot for several years before the initial bppv episode). That being said I’m dizzy a lot of the time whilst running. I feel like I’m doing a lot to overcome this without medication.

I’d really appreciate people’s experiences with SNRIs and if this made a difference to your physical symptoms.

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Honestly, topiramate was the drug that got my symptoms under control. Venlafaxine (an SNRI) was added later to reduce the frequency of break-through events. Other than temporary fatigue, I haven’t had any issues with it. I titrated up to 112.5 mg and seem to do pretty well at that dose. I’ll see my neurotologist again in a few weeks and discuss where we go from here. I’d like to titrate off the topiramate (side effects) but I worry about relapsing. Maybe I can do ok with just the venlafaxine . . . who knows? Again . . . trial and error.

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Charlie, experienced people visit the site less because they generally have the conditioned under some more control, so it’s worth being patient. Also it’s worth noting a lot of people are going to ChatGPT more these days, so spend less time on forums. There are a lot of members watching the forum and if they have something particularly relevant they will jump in.

Thanks @sfnative for helping :folded_hands:

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Just wanted to address this. I’m not sure if it’s this, or somehow the brain gets into some hypersensitive panic mode and it needs to be brought out of that mode lest it “over-compensates” and makes the situation worse.

Whatever it is you need to find some medication to alleviate at least the worst of the symptoms (don’t expect a silver bullet to cover everything, all of the time).

That’s interesting and unfortunate, my response to Amitriptyline was immediate and made a huge difference. Of course we are not all the same.

That’s really tough Charlie - the newborn phase must have been really difficult for you (and sleep hygeine is unfortunately a really important part of recovery). How do you handle sleep with having such a young child?