Just got back from Dr Surenthiran

What a morning! Luckily the drive only took 40mins so much easier to get to than Queen Square. I took my friend with my and dh came too (still wants to help although now living apart).

Anyway, he’s put me on pregabalin (Lyrica) plus a migraine diet sheet. He Didn’t agree with the sodium valproate that the QS doc prescribed. Apparently I have a hyper excitable brain from years of being dizzy. He’s told me not to go Googling etc and surfing for more info! I know Lyrica is an anticonvulsant that affects GABA, similar to Neurontin. And that it’s likely to make me as fat as a house. Should expect to wait 4-6 weeks for any +ve effects. I shall start tonight with trepidation ( my middle name). He says it’ll calm my anxiety too. I told him about my job situation and he’s asked me to get Occ Health to write to him for a report to get work off my back for a month, which was very nice of him.

My next problem is explaining to the Queen Square lot I’m sacking them!

Dizzy-Izzy

Hi, glad it all went well. Good luck with the lyrica. With regards to the National Hospital, simply cancel your next appointment and don’t rebook.

Hey,
Sounds like a good plan. I have read good things about Lyrica and Im hopeful it will help you!!

Best to you…
Kelley

Well, it seems like a good plan to move forward with - excellent that he was so supportive and validating too re getting time of work - maybe it will help your DH a bit to hear from a specialist that your issues are real?

anyway best of luck with the new medications - my mum has been on a v similar drug and she didn’t put on any weight so as with many of these things you may not have many or any of the side effects.

I agree re Queesn Square - just cancel the appt :smiley:

Will keep my fingers crossed for you

Dizzy Izzy - just to let you know that I too am on Lyrica (from Dr Silver). I started in Dec 10 and built up to his recommended dose of 150mg morning and evening. I have to say that I read the side effects before I started and was really worried! However - I have had no side effects apart from weight gain (2 and half stone!!). This is a small price to pay for feeling better and I’d say I’m at 60-70% now. Dr Silver wants me to give them 4 months on full dose so I have a couple more months to go before that so there’s still chance for more improvement.
Give it a go - as I look at it I can always deal with the weight when I’m better!
Good luck
Tracey x

Thanks again everyone

Tracey - it’s nice to hear from someone who hasn’t suffered too many side effects AND feels a bit better too. I must say I couldn’t believe it wehn I read the main SE is dizziness! I’ve also stupidly been reading all sorts of horror stories about swelling, rashes, and inability to keep awake.

I didn’t used to be fearful of meds, I don’t know why this all started. I guess at present I feel very vulnerable and alone.

I’m basically living in the back bedroom of a friend’s house (a very lovely, kind friend albeit) and haven’t seen my children for nearly a week. I feel totally abandoned by my husband and have never cried so many tears before in my life. It’s SO difficult managing all the diet stuff when living with another family and of course it’s impossible for me to avoid stress under the circumstances. Surely, I tell myself, this has to be rock bottom, but I’m having a hard time seeing my way out.

I haven’t actually started the Lyrica yet as i saw Dr S privately to been seen quickly. He told me to get my GP to write and refer me to him on the NHS, so that’s good, but he had to give me a private prescription for Lyrica in the first instsance. Well Boots charge £250 for one month’s supply of this drug, so I need to get my GP to write an NHS prescription. As it’s now the weekend and we were too late yesterday this is going to have to wait till Monday.

Anyway, thanks for all the support everyone

Dizzy Izzy xx

Hi DizzyIzzy,

Don’t get too concerned about drug side effects - they probably won’t happen. The manufacturers have to put every conceivable SE on their warnings so you are, well, warned. And if you DO get unmanageable SE well you can just stop taking it and try something else. A lot of us do seem to experience weight gain but honestly, if it’s a choice between that and chronic migraine weight gain wins every time.

There are good reasons docs tell their patients not to play home doctor with Google. First off is trying to diagnose yourself. That’s not helpful. You can scare yourself shitless and secondly you can come across all sorts of hocus pocus nonsense and bogus ‘cures’. That you are full of ‘toxins’ for example and that if you rub some organic papaya on your temples or stick your feet in a bowl of magic water you’ll be cured. Ahem. Cough. Etc. THIS forum on the other hand is 100% sensible and Scott keeps the lunatic nonsense out. :lol:

Best,
Vic

Well said Victoria!

I run mile when I hear the word ‘toxins’. I’m no great believer in alternative medicine myself (no offence to anyomne here I hope), but I also realise ‘proper’ medicine isn’t an exact science and that its success in treating many non-mainstream conditions e.g. MAV, CFS, IBS, Fibrmyalgia etc. is often hit and miss.

The reason I should be banned from googling stuff is I always find out what THE worst side effects are going to be and what the contraindications are etc. From what I can tell Lyrica is either a miracle rug or the drug from hell. It amazes me how we as human beings can react so differently from each other to the same medicines.

The weight thing will be interesting. I’m 5’ 9’’ and weigh 130 lbs and like being slim, so this may be diffcult if I get this side effect but as you say that really doesn’t matter if I feel less dizzy and calmer. I’m quite self-disciplined and am hoping the weight thing only occurs if appetite increases and I eat more, rather than eating the same and putting on weight regardless. I was told I might put on weight with Dothiepin but I actually lost it. To be honest, this migraine diet is so strict I am finding it difficult to eat much at all. All my favourites such as ice cream, cream, butter, yogurts, eggs, cheese are off limits, so we shall see…

D-I

Wishing you well Dizzi Izzy,
I think everyones covered everything, so no need for further coments from me.
Stay safe.
Thinking of you.

jen

— Begin quote from “dizzyizzy”

I was told I might put on weight with Dothiepin but I actually lost it.

— End quote

WTF??

Please, where can I find your metabolism?

:lol:

Hi Dizzy

Glad you’ve finally been seen by someone, sounds like your Doc is totally on the right lines.

Just wanted to say that I too am taking Lyrica, and to be honest it does seem to be one of the drugs used for this condition with the least side effects so please don’t be too anxious about starting it. I started on 75mg/day and am now up to 600mg/day. The improvement I saw with drug suprisingl started really quickly - like Tracey, I’d say it’s made me about 60-70% better, which has made the difference between being pretty much housebound to being able to return to work (amended duties etc). I’m now trying to add Flunarizine into the mix but getting hold of this in the UK is tunring into a nightmare, but that’s a whole other story.

In terms of side effects, well I’m certainly about a stone heavier than I was when this all started again last july, but then I also took pizotifen which started the fattening up process beautifully. Every cloud has a silver lining though as they say, and although I now have a much larger posterior which just doesn’t want to fit into those skinny jeans, my boobs have increased by three cup sizes, which means I actually have some for the fist time in my life, hurrah :lol:

Seriously though, the main other side effects I’ve had are difficulty focusing, mainly first thing in the morning when I’ve just gone up on my dose. It’s a bit like each eye can see individually, but my brain just can’t put them together - Quite bizarre!. It’s like my brain forgets how to perform this task each night when I’m asleep, so I have to go with half an hour each morning of trying not to focus on anything close up, or off to the side, and then it just settles and doesn’t really cause a problem for the rest of the day. Anyway, now I’ve stopped increasing my dose and have stayed static for a while I don’t really notice this much anymore.

Another thing I find that can be a little disconcerting with it is an occasional other type of dizziness - it’s totally different from MAV dizziness fortunately, but it’s a little like trying to walk in a straight line when you’re really drunk - you walk straight ahead but somehow end up veering off and staggering to the left or right. Again, this is not a permanent ongoing state so it’s really nothing to worry about, it’s just a one off stagger here and there which comes totally out of the blue - seems to happen mostly when I’m really tired too, like if you wake in the night and get up still half asleep to go to the bathroom.

Finally, the only other side effect, and one I’m still battling with is a slight mental slowing - I think I’m noticing this more being back at work, and it is obviously added to by the illness brain fog which is great :roll: . But I think I only experienced this when I got up to a high dose. My Doc advised me to reduce the dose again to try to combat this, which I did but then had a really bad dizzy few days. May well have been coincidence but it scared me enough to increase my dose again!.

Anyway, I hope this hasn’t put you off. It really is a drug that I’d recommend, the side effects I’ve experienced are all pretty mild and perfectly livable with, it seems to be a really effective first step to getting the symptoms of this under control, and it also does make you feel kind of “nice”. It’s proven to improve your sleep architecture so you get really good quality sleep at night with it, and it just makes you feel, well, kind of relaxed 8). I had restless legs before I started taking Lyrica so I was always all fidgety, and the Topamax that I’d been taking had kind of tensed me up somehow. I stopped taking that and started taking Lyrica and it was like every muscle in my body took a big sigh of relief and relaxed.

In terms of Queen square, if you saw Dr Surenthiran privately then is it not worth staying friends with Queen square for now and maybe just seeing if you can change your appointment for some time in the future, maybe six months or so - unless Dr S is going to see you on his NHS list after this that is? You don’t want to set yourself up for having to pay for every future consultation, and you might struggle to get back in with queen square if you totally unregister with them - they do seem to be totally overrun at the mo as I’ve just had a letter from them saying my appointment for April has been rearranged for SEPTEMBER!!! (considering I’ve supposedly been on the list for an emergency appointment since November that’s just outrageous!).

Anyway, the summary of my morning ramling post is very much, get that drug prescribed and get on it girl. You shouldn’t have any issues with your GP prescribing it - I did exactly the same thing and took a private prescription to my GP and it was fine.

Good luck and keep us posted xx

It was so nice waking up this morning, checking my email and seeing all the +ve messages added to this thread. At present I’m usually waking up feeling crap with a feeling of dread in my stomach as to what the day will bring and how my head’s going to feel.

Thanks for your long post dizziblonde. I had a look through some of your old posts. I too contemplated seeing Dr Silver privately and read all his stuff about hyperexcitable brainstems, and that of Dr Andy Dowson, who also advocates pregabalin-type drugs.

Interestingly, between the two major MAV bouts of my life (ages 18-24 and 37-now) I suffered on and off from SEVERE restless legs syndrome and query chronic fatigue syndrome and definite panic disorder.

It’s reassuring that Dr Surenthiran is not alone in this hyperexcitable brainstem theory and that others are also onto it. It makes a bit more sense to me now why Lyrica has been prescribed. And also why I find temporary relief from taking clonazepam (although Dr S. said stop taking it now). It’s interesting that the Queen Square lot never mentioned this theory.

One other thing - this Dr Dowson guy has mentioned red and blue lights can be a trigger. Never occurred to me till now but I’m wondering if I should try and change all the background colours for things like this message message board and Googlemail and general microsoft office stuff to another colour. Anyone else found this helpful?

Actually I think I’ll post a new thread on this colour topic as many of us have problems with monitors, and it may be the colour blue contributing. Certainly this forum could be in a nice yellow, green or pink :lol:

Once again, thank you all

Dizzy-Izzy