I’ll be brief but wanted to know if this is to be expected. It’s been a long road but I’ve suffered since 2012 thinking it was inner ear damage causing vestibular neuritis diagnosed by the London hearing and balance centre. I learnt to live with it and did regular physio and things on the whole improved. Having the coil fitted in 2023 made everything significantly worse despite 10 years of vestibular physio and then in summer this year things got worse again and I sought another opinion and saw Dr S and Nicola Harris who said it was actually migraines despite no other symptoms but dizziness.
with no other options and at my wits end I had nothing to lose so went all in. With low blood pressure Dr S put me on the diet and on pizotifen and for the first two months things got much better with some days me experiencing no dizziness at all, unheard of since this all started. But last month, at four tablets a day, I got food poisoning and everything got far worse again.
since then I’ve been unbearably dizzy again. Debilitating dizziness like when it first kicked in in 2012. He said it’s to be expected from being unwell but no other illness in the last 13 years has made me regress this badly or for this long.
I am almost bed bound with it. he has just added topiramate to my meds and am also on riboflavin and magnesium but am feeling rather despondent that despite everything I am so so so bad again.
I do wonder how much of a role hormones are playing as I am 40 so probably starting peri menopause but it doesn’t make sense to me that despite all these active steps I am so many steps behind where I’ve been with this all
sorry for rambling message. Total brain fuzz and fuzzy eyes. Just a bit desperate.
It’s so frustrating for us “long haulers” when we have a major set-back. I feel for you. Take a step back, lay low, and try to regain some equilibrium. For what it’s worth, topiramate has helped me tremendously. Yes, there are side effects, but I’m willing to live with them. Hang in there – you’ve managed this before and you will again. In the meantime, I’m sending healing vibes your way.
Hi JAIME, I really feel for you. I am 3 years in, but much older than you (77) fit as a flea and never a day’s illness till now. Began with an ear infection after having left ear syringed and vacuumed. Eardrum perforated and I haven’t been the same since. Started staggering and needing someone to lean on when I walked, severe nystagmus ALL the time my eyes are open. Had two MRIs and a CT scan and spent 3 hours at a dizzy clinic getting a VERY expensive diagnosis of otolith dysfunction and posterior semi circular canal hypofunction bilaterally. Doing Epley manouver 18 months ago three times fixed me but only for the afternoon. Next morning, I was just as nauseous and dizzy as ever like being constantly on a boat, More visits to ENT who said my ears were healthy and referred me back to neurology who did the MRIs. They had found a lesion on my brainstem which “could have been there since birth” and a second MRI showed no change. Neurology said it should not be causing these symptoms and between them and the doc, I have been on a raft of meds, mostly antihistamines, none of which have helped. I take Nausicalm every morning to stop me being sick, Took topirimate for a month but it made me worse. Attempted vestibular exercises from You Tube as there is nobody doing it near me (am in fairly rural NZ) Any head movements make me worse, so I’ve stopped driving as reversing is impossible. And like you, I feel I’ve been cut loose with no help or real solutions. I’m seeing a chiro who makes me feel a bit better, the physio was no good for me because obviously my fitness has run down, I used to walk every day and she just wanted me to do strengthening exercises and avoided the cause of the whole problem.
It’s important not to stress about it, not easy I know, but bottom line is it’s not life threatening. Not even this brain lesion. Topiramate might work fine for you, we’re all different, but it definitely had a bad effect on my eyes, which is one of the side effects we can do without. Don’t you love how most meds make you fatigued and/or dizzy and nauseous, all the things we’re trying to fix?!! Some of the exercises on You Tube ARE helpful but you have to do them several time a day (without throwing up, not easy!)
I wish you all the very best with this and hope you are able to feel better on some of the meds. Thinking of you and if by some miracle I hit on a med which is really helping me, I will let you know ]
What confuses me the most is that everything has changed so much since the migraine diagnosis. For 13 years I knew my dizziness, even if it got a bit worse in the last year. Then i was diagnoses by Dr S even though according to the strict criteria i shouldnt have been, as i have never had a single other migraine type symptom.
and now my type of dizziness, frequency and severity are far worse.
That said, for the first 2 months on pizotifen - i was having days with NO dizziness at all which is unheard of so perhaps something was working. I just dont understand why since being unwell everything is unbearably worse…..
Hi from the US. Your “food poisoning” was very likely a migraine attack & with no dizziness just horrible vomiting & diarrhea. I had 2 of these episodes after eating tyramine laden food & drink. You have to take them out of your diet 100%. Vestibular Migraine is one of a “constellation” of migraine symptoms & disorders. Read Johns Hopkins expert Dr. David Buchholz book “Heal Your Headache - the 1-2-3 program” & have a serious conversation w/your doctor about all of the meds he has you on. The Rx’s may be part of the problem. Take care and feel better!
You are all probably familiar with the old saying that, “Misery loves company.” Well, you are welcome to our world of misery. Hopefully, we can help you mitigate it to the point that it doesn’t make your life too miserable.
I just want to echo what sfnative said, partly because I need to hear it myself today (two months into my first extended/significant relapse of symptoms in almost 10 years). You’ve been through this before and came out the other side. You will find your pathway through it again. It may not be quite the same journey but you’re so much better equipped for it than you were before.
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