Vestibular Migraine or Migraine Associated Vertigo

[Galaxy2]

I would be really interested to hear from anyone who has been diagnosed with this condition. I am struggling to find anything that helps and would love any advice.

Thank you

Jenny

[EOLHPC]

Hello Jenny...my version of lifelong migraine does tend to flare alongside my chronic vertigo, but, as I understand it i have vestibular neuritis. So maybe we're a bit different. How were yours diagnosed?

Have spent my lifetime learning how to lifestyle manage these predispositions. All the usual tricks help to prevent migraine & vertigo, but for certain I need my prescription meds as well

The meds that help me most to keep the vertigo element alongside my migraine-like headaches damped down are daily pred + myco

The med I take at the first sign of migraine-like headaches heading into nightmare severity is the powerful NSAID mefenamic acid 500mg (ponstan forte)...if I take it early enough, the actual migraine-headache itself disappears within a few hours. The fact thus non steroidal antiinflammatory is so effective, proves that my version of these most severe migraine symptoms is due to inflammation. No other OTC or prescription meds I've tried can control my version of nightmare migraine-headaches...and I've tried plenty

Hope something in there is useful

🍀🍀🍀🍀 coco

PS my infant onset lupus & EDS are vascular, I have Dysautonomia & PID.

[Galaxy2 in reply to EOLHPC]

Thank you Barnclown

My migraines don't actually give me a headache but dizziness and poor balance. I have had dizziness for years but it was always off and on and then about 2 years ago it became a real problem and it is now an everyday problem. My Neurologist suggested vestibular migraine 2 years ago and then because I was diagnosed with POTS and EDS it was suggested that this was the cause of my dizziness. However my treatment for POTS should have calmed down my symptoms and so its back to the vestibular migraine diagnosis which since then 2 specialists have also suggested this is my problem.

Apparently the migraine is targeted at the vestibular system and it can take the balance system days or weeks to re set itself and so the symptoms can be constant. I have tried propranolol, amitriptaline and pizotifen as migraine preventors but have had side effects with all so have given them up. I would love to find something that works as it is so restrictive.

How does your dyautonomia affect you if you don't mind me asking?

Thanks Jenny

[EOLHPC in reply to Galaxy2]

Am so glad to meet you...we seem to have some stuff in common.

So, I understand now: your version of this doesn't involve actual headache

My dizziness & poor balance predisposition to migraine mophing into severe headache became a 24/7 issue in the 1980s during my early 30s...since then these have remained a constant issue, flaring more severely according to various circumstances/triggers etc.

But i''d had a predisposition to dizziness + poor balance, & migraine-like severe headaches from early childhood. So I was used to these symptoms & simply felt determined to cope with them when they became a constant in the '80s. Even so, I was horrified by my first severe long term flare in around 1985...which the NHS took ages to investigate while I was weeping on the sofa & in bed off work for many months unable to drive, barely able to walk, sleeping much of the time

Had the NHS realised infant onset lupus & EDS (inc Dysautonomia) were involved, perhaps the vestibular neuritis diagnosis would've been more convincing....but at least the senior ENT consultant put me through the usual battery of tests & DID recognise the part my spondylosis played in my VN (spondylosis is most serious throughout my cervical spine due to a fall on head from height at 7 + the EDS) . He severely advised me that cervical spondylosis was part of the overlapping causes of my vertigo & that I'd be in a wheel chair by 50 if I didn't get my spine condition better managed & treated. That was when I began to practice the Alexander Technique (still a devotee: has saved my life: any physical therapies or body work involving anything but the most slow & gentle movement cause the VN to flare). Over the decades, I've conscientiously tried various types of acupuncture, also everything from osteopathy & chripractic to reflexology & reiki. Alexander & simple meditation help me the most (I won't go into how neurosurgery & Pain Clinic investigated the spondylosis 😉)

In the years after those initial ENT investigations, I was investigated by various rheumatologists & neurologists re the many chronic probs involved in my version of immune system & connective tissue illness...eg the NHS suspected MS due to various chronic issues (foot from peripheral neuropathy, cognitive impairment, chronic fatigue etc etc etc etc). But none of them figured out the SLE & EDS. Meanwhile I simply became extremely skilful at lifestyle managing the VN & migraine-like headaches & everything else + deeply attached to mefenamic acid 😆 for halting my so-called migraines flaring into the nightmare headaches they always became when I slipped up on my lifestyle regime. Of course this meant my life became vvvv strictly ordered and vvv limited & deeply depressing...meanwhile I became more disabled....but I trusted the medics who told me it was all normal haha.

In 2011, the vascular & neuro symptoms in hands & feet became so alarming that I was referred to my current NHS rheumatologist (my brilliant hero) who figured out SLE & EDS were underlying my chronic multisystem issues & diagnosed secondaries. Then my mother surprised us by confessing I'd been diagnosed & treated for lupus as an infant ongoing in the USA where I lived until the late '70s. Eureka! My rheumatologist started me on daily hydroxy...& over those first 4 years we added daily amitrip, then pred tapers, then myco cellcept. Now my understanding is that all my chronic multisystem sympomatology is a reflection of the several overlapping & interplaying early onset comorbidities & primary conditions (can you call EDS a primary...). It's vvv hard to separate all this stuff out and strictly attribute any of my stuff to just one of my conditions. To make things even trickier, 18 months into immunology investigations we have discovered I apparently have also been living with an early onset PID (primary immunodeficiency) 🤗. But what all my consultants say is that the way my various symptoms respond to particular meds does help to distinguish which condition is relatively more implicated in which symptomatology

Apologies for going on at such length, but boy oh boy is this subject dear to my ❤️😉

So, you asked what helps me damp down my version of VM & migraine-like headaches

- therapeutic daily relatively low doses of prednisolone & mycophenolate Cellcept definitely help keep the VN damped down AND generally help repress aspects of my Dysautonomia stuff especially the constant predisposition to dizziness & cognitive impairment & chronic lack of stamina & resilience...but apparently Vasculitis is also implicated in all this

- the NSAID mefenamic acid 500mg as required can stop my more or less constant migraine-like VN symptoms flaring into full blown nightmares...so I use this on top of pred+ myco as an occasional add on

Dysautonomia affects me in most all the classic ways inc blood pooling, blacking out etc etc. Again, I've been managing this all my life, so had figured out how to minimise stuff...but in the course of doing that, as the damage caused by my immune dysfunction accumulated, so did the severity of my dysautomina stuff...so my life became increasingly limited along with my multisystem disability. The medics who have been most vocal about my dysautonimia are my anaesthetists, the nurses who look after me in recovery & on wards, and rheumatology (I'm given special anaesthetic & kept as an inpatient rather than a day case, and rheumatology avoids certain meds eg vasodilators & drugs that affect the autonomic system eg pilocarpine)

Am sure you've had enough by now 😉

I'll only add: my impression is that my version of all this has been relatively "mild". Otherwise I doubt 5 years on lupus meds could be helping me feel better at 63 than I have since my 20s. BUT I still have to lifestyle manage a go go and live a very quiet gentle life‼️

Am glad you're here. It's vvv interesting to meet you. Hope something in there is useful to you. Hope you'll let us know how you get on with all this

🍀🍀🍀🍀 coco

[Galaxy2 in reply to EOLHPC]

Thanks and yes we do have a lot in common.

My diagnosis are SLE/Sjogrens, vasculitis, POTS and EDS type 111. The vasculitis caused a peripheral neuropathy which I had at the same time as dizziness and balance issues but nothing compared to what I have now. I do get bad headaches at times and flashing lights in front of my eyes but the dizziness (it feels like I'm standing in a small boat constantly swaying from side to side)and poor balance is the main issue. I can't actually stand still without holding or leaning on something and as soon as I try and focus on someone or something I lose my balance. I also have a orthostatic hypotension so that complicates matters as I also feel faint as soon as I stand up and that doesn't help the dizziness. Its so limiting as I have to plan everywhere I go and need to know I can sit down, I also find any movement around me or busy places exaggerates my symptoms.

I was on mycophenolate for about 5 years but it didn't help these symptoms so I don't think they are caused by inflammation, I still take prednisolone but increasing the dose made no different to my dizziness either. My cardiologist said that vestibular migraine is common with POTS patients and its all to do with the blood vessel changes.

I will certainly post if I find any answers.

Jenny

[EOLHPC in reply to Galaxy2]

Right: am understanding this. Thanks vvv much for explaining. Part of me is constantly expecting my version of this to start defying myco & pred. My sensations & probs are v similar to your descriptions. it's no picnic, to put it mildly. Am getting the impression you know a lot about Dysautonomia & POTS in particular....am wishing you all the vvv best of luck figuring out how to get this figured out & under control. Please stay in touch 🍀🍀🍀🍀

[Galaxy2 in reply to EOLHPC]

Will do Barnclown, take care

[Nikki246]

Don't know if mine was the same as your but I was getting dreadful migraines two three times a week sometimes lasting for days at a time. I had reflexology in Oct 15 and I haven't had one since. I've had headaches but not migraines, well worth a try. I didn't even have the full treatment as I was out with my friend who does it and she just did a quick treatment as I was feeling so ill.

[Galaxy2 in reply to Nikki246]

Thanks Nikki

I am always looking into alternatives instead of more pills so will investigate further. Would be great if it worked for me too!

Thank you Jenny

[Nikki246]

I hope it works for you as it has made such a difference to me. X

[Galaxy2]

Thanks for that, I have often wondered if I have Hughes Syndrome but apparently I don't. I also have Sjogrens and was also investigated for MS quite a few years ago but my neurological symptoms then were put down to Sjogrens/Vasculitis. Its all so complicated isn't it when you have multiple diagnosis and so hard to know which part is causing which symptoms and the edges of each diagnosis seem to overlap.

I will keep on trying to get to the bottom of my balance issues.

thanks

Jenny

[Galaxy2]

Thank you for that. I see Prof D'Cruz or one of his team at Guys and have been going there (or used to be St Thomas's) for 5 years and I'm sure I must have been tested for Hughes as I have questioned it but am due to go in Sept so will ask the question again. My vitamin D levels have been very low in the past and so has my ferritin and I have had a couple of iron infusions as a result. I know my thyroid has been tested but not too sure what test I had so again will ask. I would love to go to The London Bridge Hospital but am not able to work at the moment due to all of this so finances are not great.

Interesting though as I thought I probably had Hughes Syndrome years ago but have not thought about it with my recent symptoms.

Thanks for the advice

Jenny

[EOLHPC]

Hello again Jenny...have been wanting to send you this link...but had to find it first! Perhaps you know this website already?

It belongs to a legitimate USA organisation...and I've found it very helpful generally:

vestibular.org

There is an excellent section on AIED (autoimmune inner ear disease):

vestibular.org/autoimmune-i...

And another section on your diagnosis:

vestibular.org/migraine-ass...

Hoping you'll stay in touch

🍀🍀🍀🍀 coco

[Galaxy2 in reply to EOLHPC]

Thanks so much, that's really kind of you to go to so much trouble, interesting reading too, will keep you posted.

[EOLHPC in reply to Galaxy2]

👍👍👍👍🍀🍀🍀🍀

[Galaxy2]

I know I am very lucky to see him