Migraine Clinic Today

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Migraine Clinic Today

Post by sisterphonetica on Wed Apr 11, 2012 7:27 pm

Wish me luck!

I have a migraine (maybe level 4, so on the verge of medicating).

I've been writing my summary out for the doctor and it's quite depressing. Preventatives not working, really, so far, although January was a relatively good month for me.

I'm nervous about what they'll suggest, about what they say about the topiramate side effects, about what they think of supplements (I've never met a doctor who believed in anything other than HARD DRUGS.

I shall report back later.
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Re: Migraine Clinic Today

Post by Sarah on Wed Apr 11, 2012 9:39 pm

Best of luck to you. Let us know how you get on. Sometimes the only way to go into these appointments is open-minded, without too many expectations.
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Re: Migraine Clinic Today

Post by sisterphonetica on Thu Apr 12, 2012 3:04 am

So, clinic went really well today. Doctor didn't like the sound of my side effects and that, combined with the fact that it wasn't really denting my migraine frequency meant that he decided that topiramate wasn't for me.

So, I'm now to start taking Flunarizine.
I asked him about nutritional supplements as migraine prophylaxis, and he said that the evidence wasn't good quality. What he meant by that was the standard scientific response - the studies were small numbers, and not always carried out in the most rigorous fashion. I'm going to give some of them a go anyway.

I'm feeling much more positive. I don't have to put up with the drug of the moment (topiramate) when it makes me feel like hell and doesn't touch my migraines, we're trying a good quality drug, and there's a plan if this one doesn't help.

Onward.

The next potential drugs we might try are: Epilim, SNRIs, Gabapentin and something else that I've forgotten about for now.

Back in three months.
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Re: Migraine Clinic Today

Post by Tee on Thu Apr 12, 2012 9:13 am

Sounds like a good meeting - I liked Flunarazine, not many side effects and it gave me a break - its th eone drug I have on my go back to list.

There is a long thread on supplements on here and some people have had some good results - I defo think magnisum has helped me...

Do let us know how you get on......... the coming off Topamax can be a bit rough so do keep in touch xxx

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Re: Migraine Clinic Today

Post by sisterphonetica on Sat Apr 14, 2012 3:16 am

I spoke to my GP yesterday and she was happy with me to come off Topiramate immediately and start the flunarizine straight away. Half a tablet down last night.

Didn't get a rebound headache or anything else from the Topiramate - I was only on 50mg so it was fine.
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Re: Migraine Clinic Today

Post by Miyah on Sun Jun 24, 2012 9:18 am

Hi Sister,

I know this was a while ago - I was just curious as to how you are feeling at the moment and what drugs your are on?

xxxx
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Re: Migraine Clinic Today

Post by sisterphonetica on Sun Jun 24, 2012 8:03 pm

Hi!

I stayed on the flunarizine for two months. The only side effect was mild weight gain (I put on half a stone). But it did nothing for my migraines, in fact my MIDAS went up significantly. So I started mirtazipine on Wednesday. THE SLEEP! THE DREAMS!

I'm going on weightwatchers when I get paid as the last time I went on this drug I put on three stone in three months.

Fingers crossed. Back at the clinic next month.
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Re: Migraine Clinic Today

Post by Miyah on Sun Jun 24, 2012 8:43 pm

please keep updating - I hope you find something that works for you xxx

I kept an avid migraine diary last year and then beginning of this year I stupidly abandoned it as I was going all in with positive thinking and trying to not be ruled by my migraines if that makes sense? I guess in a weird thought process I thought trying not to think about it would help?

well it didnt (funnily enough) and I am now at the point where I am going to pay the money for an initial visit at he migraine clinic in London and I need to wait for a couple of months so I at least have some stuff to show them to help plan and monitor progress/set backs. Really annoyed with myself for not recording these last six months.

At least this is robably a life long process so 6 months are easily 'forgotten' Smile

Wishing you all the best xxxx
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Re: Migraine Clinic Today

Post by sisterphonetica on Sun Jun 24, 2012 9:00 pm

Good luck, Miyah.

I use a Migraine App on my iPhone to track things and a little chart my Migraine doctor gave me. All he wants to know is how many days with headache and how many days I had to retire to bed. His general standpoint on triggers is to do with change in routine and excessive sensory input. Thus gigs, heat and upsets to routine are my main triggers. Although I think changeable weather is a trigger, beyond our control!

Don't stress about your lack of a log, but start from now. You can do it!
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Re: Migraine Clinic Today

Post by Miyah on Sun Jun 24, 2012 9:06 pm

Thank you for the encouragement!! It forum and the amazing people posting are seriously what has made me more positive about finding the right treatment and probably living with this for the rest of my life and being okay about that.

My other half is really supportive but at my recent breakdown he said he wasnt aware how serious it was or how much pain I was in etc. I guess another thing I need to start doing from now on is being less of a martyr and being more open about what I am going through even if I do think it is a burden to hear.

My iPhone is at the repair centre - I feel so naked!! had an android before and a great app - it would do charts about trigger and which day of the week - how many in the last 30 days etc. What is the name of the app you are using on the iphone? is it possible to share your chart your doctor gave you?
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Re: Migraine Clinic Today

Post by sisterphonetica on Sun Jun 24, 2012 9:17 pm

the iPhone app I have is called iHeadache. Can you remember that one you had on your Android?

I found that going to a Migraine Trust information day really changed my attitude to migraine and how to get help. I didn't even know preventatives were available before then. Good luck on your journey.
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Re: Migraine Clinic Today

Post by Miyah on Sun Jun 24, 2012 10:07 pm

it is called 'My Headache Log' it is really good but obviously I havent tried lots of other. I particularly like the front page summary - it will show the most common time of day you get an attack/headache. it will show what kind of headache, common trigger,common symptoms and then there is the charts (i love graphics...)

x
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Re: Migraine Clinic Today

Post by Dr Pav Khaira on Mon Jun 25, 2012 1:09 am

My app is about 95% completed! Need some beta testers if anyone is interested?!
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Re: Migraine Clinic Today

Post by sisterphonetica on Mon Jun 25, 2012 5:20 am

iPhone or android, Pav?
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Re: Migraine Clinic Today

Post by Dr Pav Khaira on Mon Jun 25, 2012 6:19 am

Both. It'll include methods track where the pain is, how long it lasts and use MIDAS scoring and give you the opportunity to send it I your healthcare professional
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Re: Migraine Clinic Today

Post by sisterphonetica on Mon Jun 25, 2012 6:22 am

I'll test it!
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Re: Migraine Clinic Today

Post by Miyah on Mon Jun 25, 2012 6:24 am

Sounds fab - I would like to have a look at it when I get my beloved iPhone back...
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Re: Migraine Clinic Today

Post by Kala on Tue Jun 26, 2012 3:38 am

Hi Miyah,

I understand you want to have a headache diary to show the doctor you see at the migraine clinic in London but I've been on their website today and because they have more doctors at the moment you can get an appointment within a few days. So if you still have your previous diaries and record the next few days maybe that would be sufficient for your first appointment...just a thought that it might be better for your whole well being talking to a doctor that truly understands sooner rather than later.

Michala
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