Hi from Cheshire my story

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Hi from Cheshire my story

Post by Whatsername on Tue Nov 29, 2011 4:52 am

Hi everyone

I'm so glad I found this forum, I am at the end of my tether with my chronic migraines and really need to speak to people that understand.

My story goes something like this:

I started suffering with headaches here and there in my teens from about age 16 I think, I didn't think anything of it and just took normal pain killers to get rid of them. Then when I was 17 and at college I had a phase of daily headaches and my doctor prescribed beta blockers. They didn't work so well for me but the headaches just seemed to go away. When I started university studying Computing Science the headaches got more severe and it is at this point I think they were migraines. They only happened occasionally in my foundation and first year and I started using things like Nurofen Plus to stop them. When I moved out of home in my second year at university the migraines got worse until in my placement year when I was working I was having some time off every 2 months and really started to struggle. I was prescribed Zomig to stop them and this worked really well for me but by the time I got back to the final year at university I was experiencing headaches and migraines on many days of the month I would say around half the days in the month. I was taking zomig and regular pain killers like paracetomol and aspirin with ibuprofen to manage it. When I graduated and got a job the headaches kept on increasing until about 3 years ago they were almost daily. At that time I was in a very stressful job which I had to leave as I think it was affecting my health in so many ways. I was unemployed for a while and during this time I went to see the doctor about feeling ill and the headaches, they referred me to a neurologist and for CBT Counselling for anxiety/stress related issues.

The neurologist said I had transformed migraine and tried me on Topamax. I stayed on that for about 18 months but it didn't help the migraines and I had the brain fog side effect which I really couldn't tolerate any longer. The neurologist referred me to a headache specialist who asked me to try to come off the pain killers over a period of time and try a new drug which I think was Nortriptyline anti depressant. This made me sick and turned me into a zombie so I stopped that, it also didnt help my headaches. Now I am on Gabapentin and am up to 4 x 300mg tablets but that doesn't seem to be helping at the moment. The last 3 months I have had 25 - 28 days of headaches/migraines. They think it might be hormone related so I am also on a pill called Cerazette which hopefully will stop my periods in the end.

My headache pattern is basically most days I have a moderate headache and then when it is the time before my period I get a really bad migraine for a few days which doesn't seem to respond to the triptans even. I feel like I am right back where I started, I managed to stop taking the regular pain killers for a while but I just can't function at work without a painkiller becaue my head hurts too much. The Gabapentin isn't working yet and I just don't know what to do. I can't see where it is going to end and it is very hard to stay positive and have faith that something will fix it. I think it may have something to do with hormones and working at a screen all day. I am trying to change career and move into counselling or coaching type work which would involve less time at a screen but I guess it won't fix the hormone issues.

What can I try now?

Thank you for reading, this is a great forum and I am so glad it is here.

Whatsername

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Re: Hi from Cheshire my story

Post by Sarah on Tue Nov 29, 2011 5:39 am

Hi and welcome. You are definitely amongst understanding people here.

I can really relate to your experiences, especially of needing to take painkillers to get through the day. About 7 years ago now, I was taking 6 Nurofen Plus tablets a day just to carry on working. I cut them out altogether very gradually, through use of a pill cutter.

Although this wasn't a miraculous answer for me with my migraines, it definitely got me out of that cycle where the medication overuse prevents anything else from working.

A couple of thoughts on the hormonal migraines: have you tried vitamins at all? Vitamin B6 is a good one for those, especially in the form of pyridoxal-5-phosphate. Also, Frovatriptan is a triptan often prescribed for hormonal migraines, as it is long-acting.
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Re: Hi from Cheshire my story

Post by Whatsername on Tue Nov 29, 2011 6:59 am

Sarah wrote:Hi and welcome. You are definitely amongst understanding people here.

I can really relate to your experiences, especially of needing to take painkillers to get through the day. About 7 years ago now, I was taking 6 Nurofen Plus tablets a day just to carry on working. I cut them out altogether very gradually, through use of a pill cutter.

Although this wasn't a miraculous answer for me with my migraines, it definitely got me out of that cycle where the medication overuse prevents anything else from working.

A couple of thoughts on the hormonal migraines: have you tried vitamins at all? Vitamin B6 is a good one for those, especially in the form of pyridoxal-5-phosphate. Also, Frovatriptan is a triptan often prescribed for hormonal migraines, as it is long-acting.

Hi Sarah

I never tried using a pill cutter before. I take the extra power pain relievers from Tesco but am taking less these days maybe 4 a day rather than 8 - 10 that I used to so that has decreased but I try to switch painkillers so I don't get used to just one. It's still no good though taking some almost every day. I know it is something I need to get away from but I am going round in a circle because I need the painkillers to work but I have to stop taking them but if I do that I can't work properly.

I never heard of Frovatriptan but have googled it and will ask my GP about this tomorrow this seems appealing because of the long lasting effects. I will also get vitamin B6 and give that a try. I will try anything I am so desperate to get this problem fixed.

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Re: Hi from Cheshire my story

Post by Sarah on Tue Nov 29, 2011 7:57 am

I'd strongly recommend the pill cutter. I cut down by probably less than an eighth of a tablet a day, so it wasn't too hard to do, although it took a while. But, the most important thing is to be systematic with it, even if you have a really bad day and want to take a larger dose.

Best of luck with it all, and let us know how you get on.
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Re: Hi from Cheshire my story

Post by Tee on Tue Nov 29, 2011 8:50 am

Hello there and welcome Smile

You are certainly amongst friends here - your story reflects my own in a lot of ways and many others on here too.

I agree with Sarah - trying to cut the painkiller down will in the long term help - things may get worse for a few weeks - but MOH is not fun and just adds to the pain levels Sad

It sounds like stress is also one of your triggers? Have you tried any of the alternative things to reduce this ie meditation, massage, beuyko breathing.... etc - there are threads on most of them Smile

I am beginning to think that both vitamins and minerals are needed in migraine management - so B6 is a good place to start. You might want to consider adding magnesium also.

There are a lot of others - feverfew, butterbur, Q10, 5HTP etc - have a look on the other threads - and do please shout if you plan to start one - someone will have been there before.

I found Frovatriptan to be one of the better triptans Smile It worth a go - there are 7 different types in the UK - so if this one does not help, there are others.

Its a horrid illness this - which unless you have had it - I do not think you understand......... it zaps you........ but hang in there, a lot of us have hit rock bottom and are on the way back - do let us know how you get on with the GP

Hugs

tee



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Re: Hi from Cheshire my story

Post by whitzendJane on Tue Nov 29, 2011 11:05 pm

Just wanted to welcome you and say hello. I agree with all of the above comments and yes you do have to cut out the painkillers. For the sake of MOH and for the sake of your renal function..which will be taking a hammering..especially with the gabapentin on top.

I was also told that painkiller over use will actually stop the gabapentin from working properly. So although I know it's hard when you are trying to keep going, you won't really know whether your meds are effective until you get to the stage where you are only using painkillers 2 days per week..and yes that is including triptans.

I can hear your jaw drop as I am sure you will wonder how to cope but most of us have been there with this and felt like you do now. You are very much at the beginning of your journey and there are many other medications you can try yet so don't give up.

Keep posting and we will support you the best we can through this.

All the very best
Jane
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Re: Hi from Cheshire my story

Post by Whatsername on Tue Nov 29, 2011 11:47 pm

Thank you for all your supportive posts. They are really helping me to feel more positive. I do feel like I have hit rock bottom and sometimes like there is never going to be a way back to feeling normal. I saw the GP today and she was so nice, she said to carry on increasing the gabapentin unless I can't tolerate the side effects. I am feeling a little off balance and my memory is really bad. It's a bit like I felt on the Topamax except my reactions aren't as slowed. Another doctor suggested I take aspirin instead of things like Nurofen plus and paracetomol. Today I got Vitamin B6 and magnesium and a pill cutter from the pharmacy so I am hoping the vitamins will help me. The doctor suggested taking some time out from work to get over the pain killer issues but to me that is a last resort I don't want to do that but I know it may come to it in the end.

I don't think the Gabapentin is having a chance to work. I do take less painkillers than I used to, ages ago I was up to 8 - 10 a day but now I do think I only take 2 - 6 depending on how bad a day I'm having.

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Re: Hi from Cheshire my story

Post by Sarah on Wed Nov 30, 2011 12:38 am

Sounds like you've taken some really positive steps. Glad to hear you have a supportive GP.

To use the pill cutter, you'll need to settle on a starting dose, and then start cutting down from there. That was easy for me, as I was taking the maximum number of Nurofen Plus per day, so was on the same every day. For you that might be difficult to decide, as you don't take the same every day.
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Re: Hi from Cheshire my story

Post by Whatsername on Wed Nov 30, 2011 7:55 am

I am taking about 6 aspirin a day in 2 doses and then in between that I am also taking 1 triptan every 2 days approx. Sometimes I take Dichlofenac (hope I spelled that right). I just can't get through a day without taking it and it really upsets me I feel like it's all out of control but if I want to function I have to take them. Is the only way out to go through the pain??

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Re: Hi from Cheshire my story

Post by Sarah on Wed Nov 30, 2011 8:30 am

I'm afraid it is. Sad But I wouldn't advise anyone to go 'cold turkey', although I know some do. I personally find it is better when cutting something out (including caffeine etc) to cut it out gradually and systematically. Maybe you can try to cut out the Diclofenac first, then the triptans, then start cutting down the aspirin.
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Re: Hi from Cheshire my story

Post by Tee on Wed Nov 30, 2011 8:54 am

You sound like you have taken a deep breath and come out fighting Smile
So nice to read.

But Sarah is right, cold turkey is not fun - the plan to cut down slow is much more manageable - you should consider taking a few weeks off work to do this - it will get worse before it gets better - but please do hang in there and we will be here to hold your virtual hand Smile

I would go for the Dicofenac first, and then the aspirin half a day or every 2 days - your not taking loads of triptans - some take them everyday - and if a mig hits these are the ones which should work the best...... just do it slow and keep a record as you go - keep strong - you GP is there and so are we..

Good luck Hug

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Re: Hi from Cheshire my story

Post by Tee on Wed Nov 30, 2011 8:58 am

Oh while I think about it - try to keep to a regular pattern of sleep and eating and drink more water.... x

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Re: Hi from Cheshire my story

Post by whitzendJane on Wed Nov 30, 2011 11:39 pm

Yes I agree..even avoid lie-ins at the weekend..keeping to a strict routine does help.

You are doing the right thing and you may find that some of your symptoms are MOH anyway and once you are off the painkillers everyday you may see a big improvement.

We here to listen if you are having a wobbly time so keep posting.

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Re: Hi from Cheshire my story

Post by Whatsername on Wed Dec 07, 2011 2:26 am

Just a quick update for you all.

Things are looking up, I haven't taken a painkiller for 6 days now. I just decided I was going to try to get through the headaches and not take anything. I had a few mild ones at the end of last week but when I didnt take a painkiller they just went off and then came back on again but I just pushed through it. If it had gotten worse I was going to take a reduced dose using he pill cutter I got. I am taking 4 x 300 mg Gabapentin a day but this is not without its side effects. Terrible dreams which seem really warped and scary at times and memory loss mainly.

I can't work out whether stopping the pain killers is the reason why the headaches have gone or the Gabapentin has just started to work. I am tempted to reduce the Gabapentin because of the side effects but am scared the headaches will return. I also stopped taking all of my vitamins to see if that helped. I have been off work since 1st December and am back tomorrow and hoping this wont mean a return of the headaches.

What do you think?

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Re: Hi from Cheshire my story

Post by whitzendJane on Thu Dec 08, 2011 5:37 am

1st well done.

It's probably a combination of knocking off the painkillers and perhaps the gaba is now being allowed to work.

300mg isn't a big dose and personally I wouldn't rock the boat if you've seen an improvement. A lot of side effects lessen once your body adjusts to the dosage and the fewer amounts of painkillers.

Memory issues are a tough one as it maybe more symptomatic of a migraine than the gaba..also tiredness can play a big part, as can stress.

Gaba is one of the least problematic anti convulsant meds, so if you are seeing results don't give up too soon...especially if you have returned to work.

My neuro told me that yo have to give any preventative 4 months on the right dose before you really know if its working for you.

Very good news that you are feeling better and well done again.
Jane
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Re: Hi from Cheshire my story

Post by Tee on Thu Dec 08, 2011 12:22 pm

That is fab news Smile

I am with Jane - I would not reduce the Gaba just yet - it could be just starting to work since the painkillers are being reduced - funny enough I had a long chat about this one with my consultant today and he said that the side effects on this one can settle - so its worth giving it a few months to see if that is the case.... might be worth emailing your consultant to see if they have a view.

Plus you have the return to work to deal with - that will be a good test ......... do let us know how you get on

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