Hello Everyone!

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Hello Everyone!

Post by pandora77 on Thu Feb 02, 2012 11:34 am

Hello,

I posted the "long" version of my migraine story on the benefits section as I am currently applying for ESA and need advice but thought I'd say hello here as well. Am 34 now but been getting Migraines since my teens at 1st they were few and far between but as I have got older they have tended to get more and more frequent and more painful. My mum had them when she was younger but only once a month so I just tended to put up with them. I did try a few preventatives over the years i.e. pizotifen and beta blocker but the either didn't work or side effects were too awful.

Finally saw a Neurologist last month who diagnosed chronic migraine approx 18 mirgraine days per month as well as BPPV I had thought the dizziness was migraine related but he says no and other headaches, less severe thought were not migraine he says are migraine. He Now has me on Topiramate which I'm not thrilled about still only at 25 mg and tapering up very slowly to 100mg and worried about all the side effects already I feel sleepy and lightheaded, sleeping right thorough my alarm but perhaps this will get better. So far no real improvment in my migraine, except perhaps the abortative works better but that might be due to the Naproxen he prescribed for me.

I am fed up with migraine, I'm 34 and looking back I can see how it has slowly over the years robbed me of my energy, motivation and personal life. I've gained weight on preventatives I've struggled to loose and my migraines have make exercise so difficult for me as my head starts to throb like something inside will burst. My boyfriend says if I have a headache lets go out of a walk the fresh air will make you feel better but the bright light hurts my eyes makes and makes me feel sick and the increased circulation from walking intensifies my pain, he means well but he has no idea, few people do.

There is always that thrill when you meet another genuine migraine sufferer cause you know you understand each other, to everyone else it's just a headache and your a neurotic.

I am hopeful that topiramate will help me once I am up to full dose and have got used to it in a few months. I have dreams of getting fit, losing some weight perhaps restarting some kind of career for myself however modest. They say that a regular schedule with migraine is so important with eating and sleeping but it's hard to do that when a migraine lands you in bed all day not eating you end up awake and hungry at 3am sometimes so it can be a vicious cycle I hope the topiramate can help break that cycle.

I am also aware that many people even with some improvment have such bad side effects with topiramate they cannot take it and need to stop at the moment I have been sleepy and a bit more dopey. I have also had much more sensitive skin as someone with dyspraxia and a long battle with acne this is quite depressing to see my skin suffer. At least migraine is the devil I know and I have already been tempted to stop taking the topiramate a few times. However I do appreciate that I was able to see a Neurologist on the NHS for free and I want to give his recomendations a fair chance and to be honest I don't much fancy his next option which is Dosulepin.

The appointment with the neurologist was interesting, I went with a list of my symtoms as I feel I suffer from various types of migrane mostly classic with aura but also more severe migraine which cause me to lose my vision for a few moment, to lose co-ordination, the ability to speak etc I was thrown out of a well known shop once when I was taken ill for being "drunk" when I was infact having a migraine I was trying to speak but no actual works came out. I also get visual disturbance which I can only describe as kalidascope vision where I can still see but I am also getting at the same time a geometric repeating pattern hallucination over everything which makes ordinary functioning hard.

At my appointment with the Neuro I found he wanted to ask me very specific questions and was not that interested in listening to my symptoms and experiance of migrane if I started to talk he would very politely cut me off. He also seemed rather dismissive of there being different types of migraine he said it was all just individual response and varying intensity rather than different subsections. Basically he said the various types of migraine are more about US Health Insurance Legalites than Migraine itself.

He says he only ever diagnoses Migraine and Chronic Migraine.

Anyway if you read all or any of that thank you!


pandora77

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Re: Hello Everyone!

Post by Tee on Tue Feb 14, 2012 8:26 am

Hello there and welcome.

Sorry to read you have chronic migraines.

Keep going with the Topamax - It can have some horrid side effects - BUT when it works it works well... you need to give it a good 6 months if you can.... going up slowly - the side effects seem to go up a notch every time you increase the dose, But they do settle down again............

The one thing I do not agree with is the doc dismissive of different types - I think its important to know the type you have (In time I also think that they will find that different types are caused by different things) BUT it is important for example if you have Hemepelgic Migraine taking Triptans could be a risk, if you have Basiliar the way you hold your neck is important and then there si the psychological effect of just knowing what is wrong -this might help you http://migrainetalk.forumotion.co.uk/t185-types-of-migraine

You are quite right re the regular pattern of sleep, food etc for migraine management - but as you say - that is damn hard at times..... One of the other ways to manage migraine is to work out your triggers and then get better migraine trigger management - do you know what your triggers are?

http://migrainetalk.forumotion.co.uk/t330-types-of-triggers

Do you practice any relaxation stuff at all? Yoga, meditation, Beuyoko breathing, massage???

BTW I LOVE the name - Pandora................. just remember her box............ when all else was gone HOPE was left.... x


Tee x


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Re: Hello Everyone!

Post by Nekoha on Tue Feb 14, 2012 5:32 pm

I was on Topamax back when I lived in the States. It was WONDERFUL! If you can fight through the side effects until they settle down and it works for you, I am sure you will find it worth it.
I can totally empathize with your frustration at your boyfriend telling you to take a walk. Yes, people who have never had a migraine simply can't understand what we go through. Migraines are a disease, not a simple headache. My own husband was kind of a jerk about migraines until one time I threw up so much that I overflowed the bucket he was holding... Laughing Also, he has become even more understanding after he visited the neurologist with me. Can you convince your boyfriend to go with you and have his questions answered? (If that is something you want to do.) Having someone who is supportive is really important.
For me, getting a regular schedule is also near impossible. I have insomnia, too, so a regular wake and sleep time is just a dream! One thing that does help is if it is a weekend and I have a migraine, my husband will bring me broth to drink. If you can handle that, it helps to keep the blood sugar normalized and I have found that my migraines don't last as long if I get a little nourishment.
Hope something I said helps even a tiny bit, and I also love your name!

Nekoha

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Re: Hello Everyone!

Post by Tee on Wed Feb 15, 2012 6:32 am

Very Happy Love it - nothing like a bowl of sick to convince a hubby you really are not well...........

Having a partner who understands is SO important.... And taking them to all the doctor appointments is perfect.... not only do that get to hear first hand, they can also remember what was said Smile

You can also give them access to this site and get them to read a few of the members stories - I know of a few partners who have done this and had the penny drop moment Smile

I agree with the blood sugar - I find if I deep I am much worse, even my 8 yr old is good at cooking an omlette for me now Smile

Nekoha - Have you ever tried Amitriptyline - They use if for migraine - BUT I found it helped me get my sleep pattern back. When I had my BIG HM 6yrs ago I lost the ability to sleep - I could fall to sleep but I could not stay asleep - at its peek I was waking up every 15 mins - so 10+ times a night - I was a walking zombie. Amitriptyline knocked me out enough to let me sleep....

Tee

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Re: Hello Everyone!

Post by Nekoha on Wed Feb 15, 2012 7:36 pm

Tee,
I have been on Amitriptyline before with little result. Right now my doctors are actually transitioning me off ALL medications, even my sleep aids. They want to start with a fresh slate, so to speak.

Nekoha

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Re: Hello Everyone!

Post by Tee on Thu Feb 16, 2012 2:54 am

OK - I have done that before and it helps. I am now off most stuff - I use Botox as a preventative, Triptans and Codine when I have to. But I also use supplements - Magnsium and zinc and I use a lot of relaxation tools - Meditation, Indinan Head Massage and Breathing.

In the meantime you could try a natural approach and do a relax routine before bed - warm bath, warm drink, meditate... lavendar oil in pillow or a sleep aid CD???? Not sure if you have tried any of these?

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Re: Hello Everyone!

Post by Nekoha on Thu Feb 16, 2012 8:04 pm

I have a very strict bedtime routine - takes about 45 minutes to an hour to unwind and get ready to sleep... and I use breathing techniques to put myself into a relaxed state in the hope that I will fall asleep!

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Re: Hello Everyone!

Post by wutwoo on Sat Feb 25, 2012 5:34 am

Hi, your story hits home. Dr put me on Topamax 8 mos ago and it took awhile to find the right dosage. Don't give up, I have several friends with great success. Also, I've been on Amitriptyline for years, take 25mg one hour before bed, and most nights, it helps me.

I totally understand about not feeling like the dr is hearing you or getting to the root of your problems. It does seem like a merry-go-around or roller coaster at times. You think you've found the cure and do good for awhile and then boom it hits you again...hang in there!

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Re: Hello Everyone!

Post by Tee on Sat Mar 03, 2012 10:04 pm

Do you mediate at all?

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