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Jools diary

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues: only during attacks
Number & duration of acute phase(s): varies
Any suspicious physical event/trauma leading up to dizziness: Head / neck injury
Start of chronic phase: difficult to say
Age at chronic onset: Mid 40s
Started medication: sumatriptan zolmitriptan
Stopped medication: sumatriptan zolmitriptan
Number & type of consultants seen to date: 3 separate GPs and 1 neurologist
Diagnoses received (one I’m “running with” first): Not Officially diagnosed with vestibular migraine but experiencing symptoms- currently under investigation.
Medications used successfully for MAV:
Failed medications for MAV:
Non-pharmalogical treatment tried which helped:
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified: none
Any hearing loss in either ear: I don’t know!
Persistent or intermittent tinnitus and character: only during an “attack”
Other chronic conditions I’m suffering from: none
Medication I’m taking for other conditions: none
Any personal history of migraines:
Any family history of migraines: none
Any history of ear problems: none
How did friends, family, and doctors react to your symptoms?: Doctors unsympathetic, best professional I’ve seen was a nurse practitioner who LISTENED and got me a referral

Symptom summary

What’s Gone: (what symptoms you had but no longer get) visual aura
What’s Ongoing: (what symptoms you still get) Headache, dizziness, heaviness of head, nausea, vomiting, stiff neck. Dizziness and motion sickness type, a feeling of being either drunk or at sea, acute migraine symptoms periodically of nausea, vomiting, whooshing noises in ears, stiff neck and terrible crushing headache.
My Worse Day Now: (description of the worst day you get now) a few hours of dizziness followed by 10-12 hours of excruciating pain in my head, stiff neck, nausea, whooshing sound in war, vomiting and dizziness followed by hours of fatigue

Rough History

First migraine suffered was during a concussion period following an accident at work. I inhaled a large concentration of hydrogen sulfide gas which caused me to black out, I fell hitting my head on the corner of a metal cabinet, and then on a concrete floor. I needed 30 stitches and experienced migraine headaches in the following three weeks. A few months following this my car was hit side on by a transit van and I suffered whiplash, My neck became a weak point that would trigger migraine- usually every three/four months I would get a “warning” which would be a visual aura in left eye - if I took over the counter medication I could lie down in a dark room and sleep it off. Apart from a period about 7 years ago where I had more regular migraine which was sorted by physio it wasn’t even an issue for me. In the last two years things started to change, I stopped getting visual aura as a warning and started instead feeling nauseous, i began vomiting during the headaches And my usual medication stopped working to help with the head pain. Then the dizzy spells started and my attacks started to increase during this time from 1 attack every three to four months to 2 or 3 attacks a week. I know find I have “spells”where I will be attack free for three or four weeks then have three or four weeks of attacks which increase in duration and severity during that time building to a massive attack which wipes me out for a few days.

Start of journal

A month on from my MRI scans- and I’ve had no results back- I’m assuming no news is good news! I’ve chased them but the neurologist hasn’t received them from the hospital yet.
My last “full on” symptoms were the 30th December, One of the worst I’ve had, I blacked out twice in the prodrome spell which lasted almost a week. I’ve had A few “dizzy” spells on and off since but these have been mostly mild. I had one episode where I felt worse on 5th January but I managed to sleep that one off.
I started taking 500mg of magnesium a day on 31st December.

That’s ridiculous timescale. Is the neuro chasing them. I wouldn’t assume anything. The MRI in our case is usually just routine procedure and rarely comes up with anything so I wouldn’t worry on that score. From past experience I’d say they been lost most probably misfiled. Other than that the radiographer is snowed under and hasn’t written the explanatory report yet because that’s what should happen. The neurologist doesn’t read the MRI direct he/she works from the radiographer’s Interprepatory notes. So go back ask where they are, have they been received by the neuro’s office yet. Give ‘em a harder shove! I would and PDQ! This presumably is the NHS.

Yes it’s the NHS. When I phoned the neurologists office they said they hadn’t received anything and blamed it on the Christmas /new year holidays!

Results received today. As I expected MRI is normal.
Kind of almost disappointed because that means no where nearer to feeling better!

2 Likes

Well it should do. Soon as you have clear MRI somebody medical somewhere should go through the Next Steps with you. Confirm it’s MAV maybe and start you on preventatives, supplements, lifestyle changes, diet etc. Which should be one small step towards feeling bit better. There’s no longer any cause for them to drag their feet. I started preventatives within days of my GP getting the neuro’s MRI All Clear report.

Had it been a neuroma you could very well have lost your hearing on that side. So be very glad of that!! Good news!!

Well the letter just said the MRI was normal. No call for an appointment. I’d better call to make yet another appointment.,…

1 Like

That’s actually very good news. It indicates no tumors, lesions, and should rule out MS. An MRI was my starting point. I don’t know the healthcare protocol where you are but perhaps the next step would be to have a VNG test or go directly to the neurologist for diagnosis and suggested treatment.

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As you appreciate protocol varies considerably country to country. Normal next procedure here in UK would be med intro under own family doctor. Sometimes a neuro carries management particularly in the, very few, areas where there are specialist NHS Headache Clinics otherwise it’s the family doctor who should follow NICE Guidelines unless he/she has other personal preference. No extra, VNG Testing or any other tests are offered as routine on the NHS for MAV. CT Scan and possibly MRI. That’s your lot. Rotary Chair and all that stuff with goggles you see on the internet is only slightly more likely than meeting up with a duck-billed platypus in the UK. I suspect they only exist at the three specialist balance centres in the UK, the London-based teaching hospitals and maybe a private facility or two. Long-term as regards outcome it doesn’t seem to make a great difference. Nearly everybody ends up on the same preventatives but still as you say a clear MRI can be nothing but good news and treatment’s the next step for sure.

Yep keep pushing. I really do think fast treatment is Key. Try to get it under control before it Gets entrenched. It stands to reason it’s so much easier to treat before it goes chronic. Very recently, like only last week, I heard from a friend of mine. Her occasional migraines suddenly developed into Chronic Daily Headache which I read can be another migraine variant. CT Scan, await NHS pleasure a bit (like you), GP put her on 120mg Propranolol and 10 weeks down the line from starting the meds. And she’s back to normal. I’ve often thought if somebody had noticed my vertigo attacks were really ‘silent’ migraines maybe 15 years ago instead of telling me it was BPPV ‘and there’s nothing we can do about that’, I could have been just as fortunate. Once it becomes chronic it’s so much more difficult to treat.

Just thought I’d do a quick update. Still no recall for the neurologist following my scans I just had a letter saying nothing had been found and I’d be called to clinic. Still waiting.
The first part of February for me was shocking., 12 “episodes“ in 22 days left me absolutely reeling, attacks lasting between 6- 17 hours. I ran out of triptan - but when I tried to order a repeat prescription was told I could no longer do it over the phone - they weren’t affective for the most part during this time anyhow and the head pain was bad so I’d to struggle on for a while.
I had just got another physiotherapist, my neck felt better, more movement in it, less stiffness but my attacks had just got worst.
I then had one big attack towards the end of feb, one of the worst and most prolonged I’d had. Then… nothing, for 14 days now I’ve had no dizziness or migraine at all, still early days but it’s a while since I’ve gone quite this long without anything. .
The weird thing is, three days ago I got a period. I’m on the mini pill so don’t usually have them- in fact it’s probably over 10 years since I had a full on period.
And I feel absolutely fine!!! If anything was likely to trigger it why not that.
I really think this new physio could be doing some good!!!

So pleased you are obtaining some relief from whatever cause. This condition for many women is pretty much dominated by hormones I’d say from my own personal experience. I see links everywhere. Currently and although I am highly medicated I see it all the time. Mine’s settled considerably and I can be fine as long as I’m not currently experiencing hot flushes. Soon as I get a cluster of those and off we go again with the MAV. Direct correlation. As you have just have your first period in 10 years I’d suggest something has changed with your hormones and that change is much more to your MAV’s liking than the intermittent state of your hormones. It’s more than a coincidence. I’m no medic but I couldn’t imagine a physio could influence a menstrual flow. Helen

Wow, quite a barage, poor you. I remember those attacks. Vicious.

Glad you are getting some relief more recently.