Hi I'm New

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Hi I'm New

Post by sisterphonetica on Fri Apr 06, 2012 12:44 am

Hi, I've had migraines all my adult life, I'm now middle aged and struggling with employment and preventative treatment.
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Re: Hi I'm New

Post by Nekoha on Fri Apr 06, 2012 1:12 am

Hi Sister,
Yeah, employment is a hard one! I recently lost my job due to migraines, but the whole lack of money is another migraine in itself!! Preventative meds are so hard to work out... dosage, proper one for you, etc. Good luck with that and keep us informed! I have found this forum to be extremely helpful, and I hope you do, too!
Carla

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Re: Hi I'm New

Post by sisterphonetica on Fri Apr 06, 2012 1:19 am

Thanks. I'm so glad to have found you all! Sorry to hear you've lost your job, hoping there's a brighter future round the corner.
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Re: Hi I'm New

Post by Tee on Fri Apr 06, 2012 1:49 am

Hello there and welcome x

Sorry you are struggling - it not a fun illness at all and so misunderstood in the world of work........

Do you know what type of migraine you have?
What preventatives have you tried?

tee x

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Re: Hi I'm New

Post by sisterphonetica on Fri Apr 06, 2012 2:00 am

From the classifications on your poll I apparently have nocturnal migraines by my migraine clinic said I have migraine with sensory aura. Until recently my MIDAS Score was off the scale, but zomig nasal spray has reduced the length of time I spend in bed in the dark throwing up!

I tried amitryptiline and dosulepin as a preventatives but they didn't work at all and am now on topiramate which is making me so tired i can hardly stay conscious and as of the last few days is giving me palpitations. It's also affecting my speech, and if I told you what my job was you would understand why that is a really bad side effect for me!

Back to the migraine clinic next week.
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Re: Hi I'm New

Post by Dr Pav Khaira on Fri Apr 06, 2012 11:23 pm

The lack of sympathy from employers never fails to amaze me. The only sympathetic ones are those who suffer with migraines!

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Re: Hi I'm New

Post by sisterphonetica on Sat Apr 07, 2012 12:24 am

I don't have any of those, I'm afraid, and the big bosses only care about numbers, don't they?


Last edited by sisterphonetica on Sat Apr 07, 2012 12:25 am; edited 1 time in total (Reason for editing : typo)
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Re: Hi I'm New

Post by pīwakawaka on Sat Apr 07, 2012 12:22 pm

Have you mentioned the tiredness and palpitations to your doctor? Somnolence/fatigue are frequently reasons to discontinue Topiramate. When I was taking it it make me feel like I was about to drop off to sleep all the time, and all my movements and thoughts became noticeably slower.

Once my doctor learned of the my side effects, I was weaned off Topiramate as fast as the doctor thought was safe. That took eight weeks in my case.

Check out this list of Topiramate Side Effects, and let your doctor know if you are experiencing any of them.

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Re: Hi I'm New

Post by sisterphonetica on Sat Apr 07, 2012 6:30 pm

The somnolence and palpitations only started on Wednesday and I'm going back to the doctor next Wednesday. I was better on the lower dose. I will definitely be mentioning them!
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Re: Hi I'm New

Post by h.tomlinson on Tue Apr 17, 2012 6:57 pm

Hi Sister

I had to come of topiramate, as the side effects were the same as you, incredable tiredness and weight loss - which was great! but lack off food obviously made me more tired. Despite this my neurologist put me on the stuff 3 times! as he was convinced the effects outweighed the side effects - or he though I was making them up although the visable weight loss (4 stone) undeniable. And would not let me try anything else till I had done another 3 mths. I am now on pregabalin which is helping some so that may be worth asking for (I have tried litterally everything else on offer). I struggled with work and was made redundant in the end...this made me realise I couldn't work full time and after staying off spending my redundancy on the mortgage payments I started working part time 3 morning a week. This still effects my head but bills need paying as I am sure you know.

I hope you find a medication that helps asap!!

Hug
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Re: Hi I'm New

Post by sisterphonetica on Wed May 16, 2012 6:26 pm

So, I've been on flunarizine for a month now. I woke up with a headache, not a horrific one, but bad enough to make me get up to figure out what to do. I drank a large glass of water and had a shower, and the headache has all but gone! I now have a sensory aura but barely any headache. For me, that's exceptional as I tend to get headache, aura, throw up in that order.

I'm beginning to think that the flunarizine might be starting to work!
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Re: Hi I'm New

Post by Sarah on Wed May 16, 2012 10:07 pm

That's great news! Very pleased to hear something is working.
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Re: Hi I'm New

Post by sisterphonetica on Wed May 16, 2012 10:12 pm

Cautiously optimistic.
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Re: Hi I'm New

Post by Sarah on Thu May 17, 2012 12:33 am

The best way to be, I think! Smile
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Re: Hi I'm New

Post by Tee on Thu May 17, 2012 12:55 am

Smile........ fab news......... long may it continue x

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Re: Hi I'm New

Post by sisterphonetica on Thu May 17, 2012 1:25 am

I've also discovered that I need to take the double the already high dose of riboflavin I've been taking for it to possibly help with migraine prevention.

info on migraine preventative treatments.
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Re: Hi I'm New

Post by Tee on Thu May 17, 2012 4:46 am

That is a fab article - I tried B12 once - but after reading that I was no where near the amount needed.........

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Re: Hi I'm New

Post by sisterphonetica on Thu May 17, 2012 4:51 am

It's B2! Riboflavin is B2!

I think we all keep getting our 12s and 2s mixed up!

<necks another B2>

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Re: Hi I'm New

Post by Tee on Thu May 17, 2012 5:20 am

Smile.... Its all good news hun..........That's quite all right - we all do it lol The fab side of having a migraine brain Smile

I am so pleased to read that the Flunarazine has started to kick in and you are managing to find more stuff to add to your management plan Smile..You have made me smile today.... I just read your first post.... when you get 5 mins go look back - you have come a long way in such a short time Smile x

Long may it continue x

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Re: Hi I'm New

Post by Tee on Thu May 17, 2012 5:21 am

Oh do let me know how you get on with the B2..... I am doing ok and have a few new drugs to try round the time of month - but I like to keep an eye on adding more minerals and vitamins...x

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Re: Hi I'm New

Post by Sarah on Thu May 17, 2012 8:04 am

I take 300 mg of B2 a day, plus what is in my B complex, so not quite 400 mg, but I don't want to go over that. I do think it helps very slightly, but nothing major.
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Re: Hi I'm New

Post by sisterphonetica on Thu May 17, 2012 8:23 am

I was at my wits end when I found you all! If I hadn't found you all I'd never have known about the other treatments (the supplements), Thank you so much. I may be only a little bit better but I feel much more in control.
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Re: Hi I'm New

Post by Sarah on Thu May 17, 2012 8:35 am

That's the big one for me, to be honest - the feeling of being able to research and therefore being a bit more in control. cheers
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Re: Hi I'm New

Post by sisterphonetica on Thu May 17, 2012 8:40 am

Nightly magnesium spray pain incoming. Night night.
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Re: Hi I'm New

Post by Sarah on Thu May 17, 2012 8:43 am

G'night x
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Re: Hi I'm New

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