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[EleanorB]

Hi,

One of the myths of migraine that is frustratingly repeated by gp's and even neurologists not clued up on migraine (some neurologists specialise in other areas but may see the odd migraineur) is that it lasts x many hours then subsides. Before I got my diagnosis I had been unremittingly dizzy for approx 18  months. When I was finally seen by consultants who truly understand the condition they thought nothing of the fact it was all the time, it simply means the migraine is happening constantly. In the clinic I go to they see people who have constant, unremitting daily pain, rather than daily dizziness. The idea of migraine as a headache over one eye for up to 72 hours is the equivalent of the idea that menopause is just some hot flushes. It''s one aspect of a condition that is much more diverse in its presentation.

Migraine isn't curable but it can absolutely be managed. Mine was for many, many years and is, touch wood, for the most part now again. You need a daily migraine preventative. The drugs a gp is most likely to dispense are propranolol or one of the tricyclics such as amitriptyline. You could try asking for one or other. Take in some literature re vestibular migraine.  You don't need to have had migraine headaches for this diagnosis. Retrospectively, I now realise, before the dizziness hit, I got pain in my face/sinuses a few years before, which I now know was migraine, but there are people who just have this happen out of the blue. It took me quite a few preventatives before I hit on the right one. It's trial and error but worth persisting. It can take a few weeks to know if it works.

Ideally you'd see a neurologist like mine, someone who really knows their stuff where migraine is concerned. Remind me of your symptoms.  I know when the dizziness hit me I researched the hell out of everything and the options re what daily dizziness can be are limited, which is why I think there's a strong chance it's What you have. My main symptoms were a feeling of fullness in my ears, daily dizziness, lightheadness, brutal brainfog and intermittent, occasional spinning vertigo, this was rare, a feeling of motion intermittently was more common.

[CrispyChick]

OK. My symptoms are daily dizziness, bad nausea, loss of appetite.

This is how it started. Around 18 months ago I went on cerazette mini pill to rule out hormones, or do I thought. After a few months the nausea calmed right down and I could eat again, hut I still hot dizzy a lot.

Fast forward to 6 weeks ago.... Started low dose combined pill. 7 days in, bam, symptoms ramped right back up to how they were in the beginning. Nausea is horrific. Constantly dizzy. No appetite. Stopped pill 2 weeks ago.... Have progressively got worse to the point of tru vertigo spins and spending the weekend in bed.

Restarted pill on sat and have upped to a 30mg dose of estrogen.

So, I guess you would suggest that my changing of hormones has caused the increased intensity???

So I could ask the gp for one of those meds to try. I've been through so many avenues with her, that I'm sure she'll be happy to let me. What more could a good neurologist do for me? Where is your neurologist based privately

Many thanks. X

[Dotty]

Hi Crispychick....my worst menopause symptoms were nausea , lack of appetite, inability to eat and exhaustion. I'm post meno and hrt sorted it all out xx

[CrispyChick]

  I'm totally lost....

Did you have dizziness dotty???

Hopefully, by trying this normal strength coc I'll get an answer to the hormonal question. I had totally bought into thd hormonal idea - I was definately getting really bad moods and brain fog before all this dizziness. But what Eleanor says is making me think.......  By messing with my hormones I have made the dhole thing worse.... That much I know for sure.

[Dotty]

Hi CrispyChick yes I felt dizzy . I explained it as a spaced out feeling. I just didn't feel with it at all. Couldn't concentrate on anything. It all started when I was 47 and now I know it was the peri menopause xx

[CrispyChick]

Thanks dotty. I would say that's how I started 3 years ago, but then it ramped up to full blown vertigo and constant motion sickness type dizziness.

So, I'll keep my mind open to both options. See if gp can send me to a migraine specialist. In the meantime I'm trying the combined pill at a higher estrogen dose. Day 2.....long way to go.

What sorted you out dotty? Hrt?

I'm only 43 so docs are not happy to say peri.

Eleanor - do u know if your consultant practices privately???

[Dotty]

Hi CrispyChick yes HRT sorted it all out but I suffered for many years before I got HRT as doctors didn't know what was wrong with me! They said I'd got ME/CFS but eventually I diagnosed myself and realised that all my horrific symptoms were down to lack of oestrogen .

When my symptoms started I was taking the mini pill Noriday . I stopped taking this 3 years later as docs said that it was thus that was causing my symptoms. 3 years after this I started on HRT. X

[CrispyChick]

Thanks dotty.

I got slightly better on the mini pill, cerazette. That's the one that stops ovulation. I was still getting dizzy, brain fog and horrific pmt and low mood.... This was me better 

The worst for me is extreme dizziness, vertigo at its worst and nausea. That's why the vestibular migraine is a possibility.

It's just odd that the combined pill has made me worse. Someone on here mentioned the progesterone being too high, hence me upping the estrogen in the pill. It's a minefield.

[Dotty]

It is a minefield CrispyChick. And what suits one lady won't suit another. Just keep pestering. That's what I had to do. X

[EleanorB]

Hi there,

My neurologist, as far as I know, practices privately. Well, he definitely did recently as for boring reasons I won't go in to I thought I might have to see him privately to get a new drug not currently available on NHS and he definitely did then. He is based in London, his NHS practice is in King's College Hospital London. If you phone there and ask for a number for his PA they will probably give you her number and she can give you the details.  I think you said you are in Scotland. Although with migraine you don't need to see someone a lot, they will take a history then prescribe a drug to try, so it can be worth travelling for the right consultant. The other thing I think I mentioned is to go on 'vestibular migraine professional' on facebook and someone on there probably knows the nearest migraine specialist to you who knows what they're talking about when it comes to vestibular migraine. As managing migraine is a case of trial and error with the many, many different preventative drugs, it might be worth booking in with someone but in the meantime getting your GP to prescribe one of the most common daily preventatives. These are generally amitriptyline or propranolol. In your shoes I might go for amitriptyline. I can't take it for different reasons but otherwise I know people who have a lot of success with it.

I think it is absolutely true that people experience lightheadedness/some dizziness, nausea with meno, with the full blown vertigo attacks I'd be much more inclined to think hormonal changes might have stirred a migraine condition. I don't see a lot of people on the meno forums talking about their vertigo attacks. I'm not saying if it is peri that hormones won't help, hrt helped me, but I would be lost if I didn't also have the migraine treatment I have.

[CrispyChick]

Thanks all. I am seeing my gp next week, so will take it from there. I can't find any migraine specialists in my neck of the woods.

I may as well pursue the vestibular migraine as well as the hormones. I should probably add that I was given a diagnosis of pppd by the neurologist that specialises in that. From memory it is similar to VM but more constant. Which is me. He didn't treat me as I was feeling less dizzy then. I had also self trialled ssri for it...... Horrific experience island they didnt help. I suppose the point is, the dizziness has undoubtedly ramped back up from switching from mini pill to combined..... Leading me to hormones!

Any thoughts on taking the combined pill rather than hrt? That's me started 30/150 gederal. Sane progesterone as I was on with mini pill, cerazette. I'm 43.

Feeling awful today. Usual constant dizziness (not vertigo), very foggy (dropped some massive clangers at work today) and just really off and yucky. This is my daily life. Joy.

I have applied to have an email question with Dr Currie. She hay have a view on the hormonal / migraine debate!

[zen]

Hi CrispyChick

I just wondered how you are? Migraines on top of all the hormonal stuff is really horrible for you.

Also someone mentioned bespoke progesterone.  I just wondered what that is? I am so intolerant of progesterone.

Best wishes. x