6 years migraine getting stronger plz help!

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Hi my names billy and I'm from London, uk. I was wondering if I'm alone in this because it is scaring the life out of me. I am a 31 year old man, when I was 27 I was just like any normal person enjoying like. I used to have this slight sensation on the left temple well I ignored it as I took nothing of it, after a year went past it started to disturb me so I went to see a neurologist who sent me for an mri and eeg scan after a week later I went to get my results and the neurologist said your mri is clear but the eeg showed abnormalities and he diagnosed me as I have epilepsy.

So from their he gave me keppra so I started these medications, and I went upto 4000mg and I wasn't getting better, after 2 years of taking these I went bk to the neurologist and told him I am not getting better infact I'm getting worse, so he sent me for another mri which again came back normal.

So I went private as my condition wasn't getting better I had 2 eeg scan 1 was and sleep one and the other 24hour which both came back normal to say I have no epilepsy.

Now I am 5 and half years later getting treatment for migraines. I take botox injections in my head every 3 months and still not making a difference to my like I am suffering for 5 and half years and I have no answer I have spent over £4000 on diagnoses . I am very scared If I have made a mistake on here I do apologies I am very nerves and any one help.

i have never had a epileptic fit or black out i need help

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  • Posted

    Hi billy my symthies r wid u i read all what u have written its been 5 and half years ur suffering from pain mine is just from last year i had ct scan which became normal i asked doc send me for.mri he.says i have nothing wrong he keeps giving me.tablets which i am having no progress i feel sick everyday i cant eat anything properly dont know wat to.do i.am really fed up now
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  • Posted

    Hi Billy, I am sorry to hear of your suffering. Has anyone ever mentioned migraines to you and have you been treated for them? I have suffered with them for 40 years and seen various doctors to no avail. I am now on 400mg of Epilum, an epilepsy drug, as a last resort. I do think that doctors are not sure what causes migraines, so treatment is difficult. The only thing that I find that really works is sumatriptan at the start of migraine which then stops a full blown headache. See your GP again and discuss this with them. I'm sorry if this is not much help or reassuring but they are probably millions of us in the same boat.
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    • Posted

      Hi kath hope your good nice to know their are people in the same boat as me. 

      I have tried epilum for 2 years then I tried keppra for 2 years, and went upto 4000mg daily and their didn't seem to work. 

      Although i was mis diognosed with epilepsy 5 years ago but I have no black outs or fits.

      I then went private at queens square consulting room, London the dr their told me I have not got epilepsy the only thing this can be is migraines. 

      So in the same place I went to see Dr Manjit matharu who is one of the best drs in nurology and migraines in uk. He is treating me for migraines he has said I have chronic migraines nothing else I have had 2 botox sessions with him which each costs £550 the second time I had it 3 weeks ago.

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  • Posted

    Sorry to hear about your 5 year HX of headaches. You are in good company in this forum. I have suffered for many years & been given different diagnoses by different doctors. i think that they have to diagnose you with a certain condition so that they can try various medications. I have been diagnosed with Migraine, trigmenial Neuralgia,Tension Headaches, Cluster Headaches, Sinusitis/Allergies, Teeth Grinding etc.. etc.. I have tried many analgesics & neurontins with little success. I am so fed up & understand how u feel. I too have had an MRI, which showed normal. I was then informed that my pains were Psychosomatic, however, another doctor told me that someone can have numerous MRI's without showing the problem. It's all trial & error. With new treatments developing all the time there has GOT to be something. Take strength from fellow sufferers & the fact that there are far more of us than docs would have us believe. Good Luck.
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