just joined but not new too pain

Hi my name is Helen,
I have just found this forum and am very glad I have as there is not many places to discuss cronic migraine.
I started with daily headaches about 7 yrs ago which at first my dr dismissed and sent me home with normal pain killers. After about 1 mth on these i went back to a different dr and she has been brilliant. As the pain kept getting worse we kept trying different meds and for a couple of yrs I stuck with Prozac which kept my level to about 2-3 (oh how I wish I was back there again!) Then aabout 3 yrs ago the drugs stopped working and we were back to square one.
I saw my first neurologist which was a told waste of time 'nothing the NHS can do for you' so back to my dr more drugs more side effects more pain. Eventually I had an MRI to rule anything out and went private to my mums neurologist (she has MS) totally different experience! Different drugs again one put me in emergency with seizures (not the best night of my life) but he refered me to Dr Z in Hope hospital - he specialises in mirgraines.
At first it felt like we were starting again as he wanted to try several of the meds again for at higher doses for longer, but he eventually realised that if the meds did work (topriamate) the side effects were so extreme I was not better off. So we tried botox - again the first time private as I just could not wait another 4mths for the next appointment. It took about 10 days to start to work and them was amazing. I didn't need the morphine any more and could make arrangements to meet friends etc! but it only lasted 8 weeks and my next appointment was another 8 away. So thats where I am, botox and when it wheres off morphine.
Some days we better than others I still need to not get too tired etc some days I just want to hide in bed.
Take care all and I am sure I will chat.
Helen x

Hi Helen

And welcome

Your story mirrors many on here - so you are amongst friends

The struggle to get a doctor that works with you seems to be a growing experience of our group - sadly But when you find a good one they are worth their weight in gold

Topamax! - I hear you on that one!

I am pleased the Botox is working for you some of the time - its a start - maybe you could mix it with a med too - Have you tried Fluarazine?

I have just started on the Botox, and I am not sure if its working yet - things where getting better then i had a big Hemplegic migraine and it has knocked me back a bit. Plus I find its giving me a headache in the forehead - do you get this?

Where did you have it - I had mine in the forehead, side of head, back of neck and shoulders. 31 injections - the experience was not the best I have been through (Just found your answer in the other thread )

Have you worked out any of your triggers?

Tee

Hi Helen,

Nice to hear from you.

Yet another person, who like me has to pay to see a neurologist who will take the time to listen. It makes me so mad, when we go through the NHS we are treated this way, after all the ones that work for the NHS are getting paid well. Some of them seem to think they can speak to us any old way. It makes me so mad

Glad that you are getting treatment. I am new to the forum, and it feels good reading other very similar experiences.

Take Care

F x

HI Helen
Me Too !!!! i love the way the the NHS treat us like NUTTERS!! "I was payin £100 NI per week when I was working. Thats worth 1 hour of there time im sure.
But there you go it was not to be. I got sent away as well x x
I Am on Funarazine and it works for me but makes me tired only a consultant can get it for you though. x
have read the Botox eventually builds up so maybe over time its effect will get longer Hope so
Glad you found the site x
Sheena x

Hi all, thanks for you encouragement, its good to talk to people that know exactly how I feel. I will have to check my long list of meds to see if I have tried Flunarzine but I doesn't ring any bells.
I had injections in forehead, temples, side and top of head, neck and shoulders, then random follow the pain as he called it which was a bit more in my temples. My pain is a crushing pain in temples, which is joined by forehead pain and eye that feel like they are being pushed out. I have found morphine starts to help when the pain reaches my forehead and Diclofenac stops my eyes falling out although you are limited with how much of each you can take each day. (honest I never take more than I should
I have no idea what my triggers are as my pain is all the time but I know the usual noise/light/tiredness/stress make me much worse.
Good luck with your botox I hope it lasts longer for you! I just had a really bad weekend spending most of it in bed (husband not best pleased) dragged myself in work today although I would much rather still be in bed!
x

Jusr a quick update on my treatment. I have been for my 3rd round of botox and am waiting for it to start working, seems to get more painful each time but I know it will be worth it. My Neurologist agreed I need to have it every 3 mths as I start to wear off about 10 wks so thats a relief.
I also asked about Funarazine and he as prescribed me 4 weeks to try, I have only taken 3 doses but am already feeling tired, if it doesn't get better I will have to stop it, the toprimate did this to me and the longer it went on the worse I got. My sick note runs out next week if I don't renew it (which I am seriously considering ) and I wont be able to work with the tiredness.
I told him it feels like we are out of options but he said there is lots of other meds to try, I think he is happy with the reduction in pain I get from the botox...is it hopeless to hope for pain free treatment?
Tee has your botox started working for you yet?

Just want to add...there are some very good NHS neurologists and headache clinics out there. Its worth finding them and standing your ground with your GP to get a ref' to them.

Hi there

Glad your having a go with the Fularazine - it took me a few mths for the tiredness to kick in. But everyone is different.

He is correct there are a lot of meds out there and everyone reacts to them different - but they are all worth ago

My Botox has kicked in and everyday pain level is down as is the aura - i am not mig free - YET - and am still getting them at a full scale 10 - but not everyday - so I am hopeful for round 2 - just not looking forward to the actual process I am soooo pleased they have agreed to give you every 3mths

Hi Glad your on the flunarazine I had so much trouble with the tiredness at first but now take it at 6pm and heading for 5pm and it means I am able to get up in the morning now, although I do need a quick kip an the afternoon... its a routine I have got into now and I would rather the tiredness than the pain as Im down to a level I can now cope with. Hope you can get on with it as Dr S said it takes 3 months to feel its full affects, which was the case with me. x x
All the drugs take a while to settle in and need a bit of persistence
so try to stick with them as the side affect tend to wear off a bit after a while.
Sheena x x

Hi just wondering how you are, has the flunarazine helped?