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Helens personal diary

[Rough History] I have suffered with some form of migraine since I was 6 or 7.
I had a benign brain tumour removed when I was 16 and have scans every few years. As it was the part of the brain that controls the balance side, I have had minor issues since. Mainly I can’t lay flat and especially when Im at the dentist.

First acute balance issues: I first started experiencing vertigo 4 years ago when I was sat in a restaurant sat down with friends. This is when I first had the room spinning feeling. This considerably got worse with light and movement sensitivity and resulted in me having 3 months off work.

Any suspicious physical event/trauma leading up to dizziness: No

Start of chronic phase: July 2015
Age at chronic onset: 35
Started medication: I can’t recall yhe names but know I tried maybe 5 or 6 and different combinations.

Number & type of consultants seen to date: I first saw a doctor at the hospital as my vision got really bad and had scans to check because of my history. I was then referred to the ENT clinic which I then had a balance test in the December. I did go pivate for a while as it was just dragging on.

Diagnoses received I finally got my MAV diagnosis in that December.

Medications used successfully for MAV:
I’ve been on Nortriptyline and Gabapentin, various dosages, for a year and a half now. My symptoms were under control until this September.

Failed medications for MAV: there were loads but apologies as I cant recall names.

Non-pharmalogical treatment tried which helped: I went to a natural health clinic in October and they did a intollerence test through the pressure points on your finger tips. This showed that only caffeine and chocolate showed up on the migaine diet and, aside from these, gluten, wheat, oats, egg whites and beer showed up. They gave me a bottle of ‘Life Minerals’ to take 2x daily and BioCare Polyzyme Forte 2x daily. These seemed to free my symtoms of any visual disturbance, head pressure and migraines until I finished taking them. I was bad again for 2 weeks and then started taking them again. My syptoms quickly went again. Only this time, a stressful situation overpowered everything and I’m back to where I started in September.

Non-pharmalogical treatment tried which didn’t seem to help : I saw a chinese doctor for almost a year. I had accupuncture and cupping therapy with massage. This was great with relaxation as I’s quite often doze off and wake myself off when I snorted :laughing:. I’ve also had a number of chyropractor appointments which again hasnt helped, although this wasnt one that specialised in neurological/vestibular disorders.

Dietary triggers identified:
It’s hard to say as I believe lemon is one however, because of the trigger jug, I can’t be sure.
When I get bad, I don’t like to chance anything, so just evaluate what I’ve had that day and just stop them altogether.

Any hearing loss in either ear: I suffer with Tinnitus on a daily basis. As a child, I had hearing problems where I had a number of operations to have gromets put in my ears. The last operstion I had on my ears was to have a t-tube put in my right ear. Otherwise now, I have no hearing probs. Wish I did at bedtime so I dont have to have earplugs because of my hubbys snoring :laughing:

Other chronic conditions I’m suffering from:
I have suffered with abdominal migraines since the age of 13. These cause me alot of pain when they strike leading me to blackout for a minute or so.

Medication I’m taking for other conditions:
Aside from the Gabapentin and Nortriptyline, I take Magnesium, Calcium and Vit D, antihistimine, symbicort inhaler and Noriday (my pill).

Any personal history of migraines:
When I was in my early years at primary school, I regularly had to go in a dark and quiet room due to having a full blown migraine with pain, aura, pins and needles in fingers and numbness in face and hands. I cant recall whether or not these would continue to the nect day.

Any family history of migraines:
My mum suffered with migraines also and would go to bed with them. They stopped later on in life but she does still suffer with the odd one, maybe a few a month but it would just be pain.
For both of us, the only medication that would clear these painful heads would be Anadin Extra.

How did friends, family, and doctors react to your symptoms?: My family and friends are really supportive. It’s only the odd person thatyou speak to that have ever encountered vertigo that they understand.

Symptom summary

When I was last at work, when I went home sick, I got up, got ready and went to work feeling fine. It was only when I sat down at my desk that the spinning started. Not the room but it feels like something in my head is spinning. This would follow with head pressure and then a migraine.

(Your current state) I am fine when Im sitting quiet. Im fine most of the time if I take it slow at home. I sometimes get the head rush feeling like ive stood up too quickly, and sometimes that feeling stays. When I go out and then sit down for a drink of lunch, I get that spinning feeling in my head. I really don’t know what the cause of this is?!!

What’s Gone: (what symptoms you had but no longer get) The painful migraines aren’t so frequent. I do have migraine free days. At the best of times, sometimes a week.

What’s Ongoing: (what symptoms you still get) the spinning feeling affected by movement and lights.

My Worse Day Now: (description of the worst day you get now) Where ive had the migraines for so long, i can sadly live with them. It’s the head spinning that stops me from living a normal life!!

Rough History

Aged 6 or 7, migraines started for a few years

Aged 13 started abdominal migraine

1996 followed by a long period of migraines, sickness and finally paralysis, Kings College Hospital diagnosed brain tumour

Ive always suffered with, what I thought was, cluster headaches as had them more days than nothing. It was the neurologist that told me they were migraines.

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An interesting read. We’ve a lot of similarities apart from sharing the same name it seems. Pity you couldn’t remember the names of the failed meds though. Perhaps, if you went through the comprehensive lists on a thread like ‘a 100 meds for migraine, don’t give up’ you’d be able to pick some of them out. It’s only afterwards one wishes one had Kept record. It doesn’t seem relevant at the time I know.

You are certainly right there!

If you’re eating out, in a restaurant/pub, beer garden, shopping precinct etc it’s the huge amount of extra sensory stimulation created by a busy noisy environment. That causes increased symptoms. Visual Vertigo mostly which will cause you to spin. Restaurants always my main trigger.

And despite their effect you’ve not been back on them? Why not? They seemed to be helping you. Helen

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