Really struggling. Looking for help.

Firstly, my apologies as this is going to be a grim read but I’m feeling pretty desperate and wanted to reach out into the void. I’m having a really tough time and wanted to find out if anyone is experiencing what I’m experiencing. I’m feeling pretty alone with my vertigo and have a terrible feeling that it’s I’m the only one going through something like this.
I’ve had chronic constant vertigo/dizziness since 1997 that has got worse over time. I constantly see the room moving or jerking sideways, as if I’ve spun round, stopped and the room can’t quite come to a standstill. I feel I’m constantly moving, turning, rotating and sometimes spinning and my balance is absolutely terrible. I’m now mostly bedridden but try and get up to do small tasks to try and beat this thing. I’ve been diagnosed with a whole range of different conditions over the years, the most recent being vestibular migraine and PPPD. I also have ME/CFS but I don’t know if that is related.
I’ve tried a whole range of medication but nothing has helped except maybe Flunarazine for the more intense episodic vertigo attacks. Does anyone out there have constant vertigo akin to what I’m describing (not just dizziness)? Have you found anything that helps? I’d be grateful for any suggestions.

When obsessively researching my imbalance and other symptoms I read everything I could on PPPD and I remember reading its more common in people with CFS, so there could very well be a link. Seems people with autonomic dysfunction which again is common in Fibro, which I have,CFS, Ehlers Danlos/hypermobility syndrome are more susceptible to migraines and headaches and also PPPD.

However they dont really know exactly why. All I do know is that after 5 different medications that failed, I have found a huge improvement on Venlafaxine, which is good for both VM/MAV and also PPPD. As Fibro is closely linked to CFS in many respects and shares many symptoms, it might be worth a try for you.

Thank you for responding. It’s very kind of you.
I’m actually really unsure about PPPD as a diagnosis, as I have chronic vertigo and I was under the impression that PPPD was non-vertiginous. Perhaps you have a different understanding - have you heard of people having vertigo as part of PPPD?
Thanks for the suggestion about Venlafaxine. I’ll look into it. The strange thing is the trigger for my dizziness years ago was taking Venlafaxine. I took it for about 3 weeks and it coincided with the start of my symptoms. I stopped it and the symptoms disappeared but a few weeks later they came back spontaneously and never went away. So I’m unsure, but I wonder if by some weird logic it would be worth trying.
Thank you again for getting back to me. I really appreciate it.

I’ve never had vertigo in the sense of me spinning or the world spinning and you’re right that vertigo isn’t a symptom of 3PD. From what I’ve read its more akin to feeling unbalanced particularly whilst being upright or walking, better when sitting or laying down.

A vague sense of lightheadedness, of disequilibrium, of something being “off”. The problem with trying to diagnose any condition is that there are usually a dozen to chose from, all with similar symptoms. The fact you experience episodic vertigo attacks is suggestive of something other than 3PD. Have you been tested for Menieres? Or VM? Another drug to try which is good for VM is Amytriptyline.

Welcome Ric. I think PPPD and MAV/VM distinctions aren’t that helpful atm. The treatment is very similar if not identical (you can add conservative treatment of PLF and Secondary Hydrops to that list btw) I suggest focusing on treatment and find a regime that helps keep your symptoms under control and let nature resolve things over the long run. I hope you find the site useful. Good luck!

Thanks for your response. It’s much appreciated. I am taking Amitriptyline but haven’t seen any benefit unfortunately. Best wishes

Thanks for the welcome and many thanks for the advice. It’s much appreciated. Finding something to control the symptoms would be a godsend…

I didnt get on with either Amytriptyline or its close cousin, Nortriptyline either. Both gave me headaches, heart palpitations and rapid heartbeats. Unfortunately it took me 5 attempts, plus two non MAV drugs I tried before I knew what I was dealing with. This condition really sucks as its trial and error to find something that works and that you can tolerate.

Have you read the medication section on the site. Loads of information and suggestions/ideas of medications that other members have tried. I guess we’re lucky in one sense that there are plenty to chose from. Interestingly I’m in the UK and Venlafaxine isnt widely prescribed here for MAV. Its mostly Propranolol, Amytriptyline and Topamax. I only tried it in desperation as I’d heard some USA based members saying they’d had success on it.

Sorry for not replying sooner. I’m having a terrible time with the vertigo and find it hard to use a computer. Everything is moving in my vision all the time which makes everything pretty awful. I’ve not been well enough to look at the medicines section yet but will do in when I get the chance. I’m still quite unsure what is actually wrong with me - I don’t really fit any diagnosis, so its hard to know what to try. I sometimes wonder if I have a permament vestibular migraine or something similar but I’ve never come across anyone with that diagnosis, nor can the doctors I’ve seen ascertain what’s actually happening. The neurologist I’m under said there’s nothing more he can do, and nothing he can suggest which left me pretty low, and I continue to worsen over time. Sorry for the rant, but I’m finding life pretty impossible right now. Maybe Venlafaxin will be worth a try even if I don’t have a clear diagnosis.

I wasnt entirely sure about my diagnosis, I was told VM by one consultant, PPPD by another. Hence I thought Venlafaxine was worth a try as it can help both. And it has helped so I guess ultimately whichever ‘label’ I have is really not as important as I thought. It was one or the other, or possibly both lol. It is possible to have both, maybe this is what you have?

Thanks for your thoughts. It’s much appreciated.