Vestibular Migraine/ PPPD Or Something Else

[Sparklingsunshine]

I'm at my wits end really. I'm a mid 50's female, my balance issue started very abruptly in April 2022. I have had very sporadic, classic migraine with aura since my teens but could go for years between attacks. I was diagnosed with hypothyroid in 2020 and around that time I noticed my migraines got far more regular and invasive. I was probably averaging two a week.

One day I had a migraine, it passed, and I felt ok the next day. I was walking home around mid day and started to feel very odd. Like I was rocking or the floor was a trampoline. I also noticed I was very uncomfortable in the shop. It seemed to make everything worse. I thought it was either a virus or just the after effects of the migraine and it would go away.

2.5 years later it never has. In that time I have seen neurology, ENT, Vestibular Physio. They said either VM, PPPD or VM followed by PPPD. I've got to be honest I've struggled to accept the VM diagnosis, from what I've seen VM causes dizziness, vertigo, imbalance, tinnitus. Usually between 5 minutes to 72 hours.

I have no tinnitus, no spinning, no nausea, no history of motion sickness. I do have occasional hyperacusis in right ear only. My issue is the balance, sitting or laying down I'm fine, the issue only presents on walking or moving about. I get pressure in myneck at the base of my skull and that's where the off balance sensation originates from.

I have tried numerous anti migraine meds, all the first line ones, Propranolol, Amytriptyline, Nortriptyline, Sertraline, Betahistine, Promethazine, Sumatriptan, Candestarten. I spent over 10 months on Effexor, which did nothing except make me very nauseous. None of the meds did anything. I had to stop most of them due to adverse side effects.

Surely if it was truly VM then it would have responded to something. I've also done months of vestibular rehab as well as taken magnesium and high dose B6. My vestibular physio thinks I also have cervicogenic dizziness related to my neck, which makes more sense than VM. I've tried CBT to try and alleviate the anxiety this condition causes.

My balance is better than when it started and I can tolerate bright lights, supermarkets and fast moving screens, which were all big no no's before. But the balance issues remain and cause me a lot of distress and have affected me psychologically as well as physically. I've become far more housebound due to feeling unsafe.

Its very haard not to feel hopeless. I'm not currently taking any migraine meds. I do take the occasional Clonazepam, which does take the edge off the balance problems. Any advice gratefully received.

[Onthemove1971]

Oh.. I am so sorry that you are having these medical issues.

Have you tried taking Magnesium? I take Magnesium Glycinate. I take it 3x a day and it really made a difference.

But I think you should ask to start the CRP-G class of medication. You have to have failed at taking 3 other medications. It is a once a month injection. It has helped me so much.. I rarely have any migraines.

Hope this helps.

Best to you

[Sparklingsunshine in reply to Onthemove1971]

Thank you, yes I take magnesium glycinate at night to help with sleep. I think after emailing my NHS neuro that I'm going to ask for a referral to the headache clinic and see what other treatments are available. I've heard good things about the CGRP meds but wasnt sure if they help VM.

I have Ehlers Danlos a genetic connetive tissue condition which makes my joints very bendy and liable to dislocate. One of the many downsides is increased sensitivity to medication. I've lost count of the medications I've started and discarded over the years due to intolerable side effects, painkillers, antibiotics, antidepressants etc.

Appreciate your kind thoughts.

[Onthemove1971 in reply to Sparklingsunshine]

I was told the max dose on the magnisium is 1600mg, could you increase and see if that helps?

Also, have you heard about the "Heads up" podcast? It is free and amazing.

Best to you!

[Gambit62]

I am very sorry to read about your balance problems.

I personally find that my balance (and other neurological issues) are far worse during a migraine - not the giddiness you mention and it isn't constant though it is somehting that sometimes I notice and then realise I have other migraine symptoms going on at the same time.

For me its symptoms I can live with but I really hope you manage to find something that works for you.

[Juliapester3]

I’m sorry to hear you are going through this . I had a similar episode last year that went on for 6 months feeling dizzy all the time and , like you , I didn’t want to go out incase I passed out . I am 53 and perimenopausal . It was the HRT making my migraines so bad . I dropped right back to the lowest dose and the vestibular symptoms are gone . Although I am now a hormonal psycho! 😂 I wondered whether you are at the same stage of life being a similar age ?

[Sparklingsunshine in reply to Juliapester3]

I am indeed, I started menopause at 47, so by the time the balance issues started, at 53, I was well established on HRT. I think it was getting diagnosed as hypothyroid in 2020 that did for me.

I started on Levothyroxine and in the two years from 2020-22 I had more migraines in that two year period than I did in the 50 odd years preceeding them. I was averaging at least two a week. But I never had any vestibular issues, they were just your " normal" kind. I always get auras then the head pain. Mine can last 2 or 3 days.

Since the balance issues started I've had far fewer migraines but have got the swaying, slighly drunk, off balance sensation, trampoline floor. Which is pretty unrelenting. If its VM then I assume I'm getting the balance problems but not the headache. I think VM can cause silent migraines or something. Appreciate your reply.

[Joyceito]

I took Flunarizine for similar symptoms and it really helped. Nothing else made any difference at all. That feeling of walking on a trampoline… I had nausea too. Eventually went away after three years, I live in fear of it coming back. Good luck.