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Posted , 5 users are following.

Sharon1375
Sharon1375

thanks for your feedbck i dont know where to start i hve a migraine as i speak, i have tried everything in the book been to neuroligists and had scans botox shots behind my neck but nothing seems to work i have even tried medicated i.e. topomax, amitriptyline etc.

i manage because i have had chronic migraines for 20 years but recently they started making me depressed and tearful, the migraine i am having now has been on for 2 weeks like a daily cycle. relplax, which usually calms the pain down, thats not even working this time, i just feel like i need help, my migraine specialist doctor is running out of ideas, this is why i joined this group, for help.

2 likes, 11 replies

11 Replies

  • flexi31
    flexi31 Sharon1375

    Posted

    Sharon so sorry that you are in so much pain.  I am in the UK and had botox and found it the only thing that has worked for me.  I have 36 injections all around the scalp and the treatment lasts for about 3 months.  You mention that you had them at the back of the neck but that doesn't sound enough to me.  The reason botox works is actually fairly simple, it stops the muscles contracting which is one of the main reasons you have such pain with migraine but obviosuly a lot of injections are needed to do this.  I have mine done at UCL (Queens Sq London) so maybe you need to discuss this with your neurologist.   I do hope you find help and wish you well. 
    • Sharon1375
      Sharon1375 flexi31

      Posted

      thanks for your concern im sorry not to explain treatment properly the injections which i had behind my neck was called OCCIPITAL NERVE BLOCKS, i did also have botox as you but once again it didnt seem to work, i had the OCCIPITAL NERVE BLOCKS around 3 weeks ago but it didnt seem to have much affect on me, the botox helped my neck a tiny bit but didnt really do the job, i live in jeddah now and there is very limited medication here for migraine, so i dont really have much of an option now. PLEASE HELP!
  • marmiejoe
    marmiejoe Sharon1375

    Posted

    Hi Sharon. I have had migraine for 37 years. Recently, they started all day, every day. The rizatriptin was only taking the edge off. I just started a trial of gabapentin. The day after my first dose, i woke up without a migraine - for the first time in months. Feeling so much better migraine - wise. It has only been a week and side effects are starting to lessen. Very hopeful!
    • flexi31
      flexi31 marmiejoe

      Posted

      Hi there, I also was prescribed gabapentin but unfortunaely it did not help and I didn't like the side effects, out of interest how many mgs are you taking? I am glad its workign for you. 
    • marmiejoe
      marmiejoe flexi31

      Posted

      I am working up to 300mg 3x daily. Right now i take 300mg before bed, 150 mg in a.m. and 200 mg in afternoon. Dizziness is the issue until my body adapts. What side effects did u have?
    • flexi31
      flexi31 marmiejoe

      Posted

      Thanks, it made me feel sick all the time so I stopped it.  Good luck with it. 
    • marmiejoe
      marmiejoe flexi31

      Posted

      What dose did u start with? It has to build up slowly for me or i would not be able to function.
  • flexi31
    flexi31 Sharon1375

    Posted

    Hi sharon, I also had the same nerve block and it did not work for me.  With botox I think you need a good neurologist using the right amount of botox in all the right muscle groups, where did you have the treatment done?  Botox should work on the pain for the simple reason it stops the muscles contracting, I have heard that for people who get aura, it makes no differnece to that particular problem. I really wish you well. 
  • susan43558
    susan43558 Sharon1375

    Posted

    I don't know if I already sent you a message or not. Has any doctor recommended vitamins? There is a GREAT reason vitamins are in food... because we need them. Talk to a doctor and do research but I take METHYLATED FOLATE, METHYLATED B12, FERROUS GLUCONATE, MULTI B COMPLEX, COD LIVER OIL, VITAMIN D 10,000 IU, PROBIOTIC AND OCCATIONALLY VITAMIN E. If I skip any of these, I get a headache! It is important to only buy the methylated versions of the vitamins if they are available and it will take weeks to see the difference but you'll never turn back, I promise! I also take VITAMIN C. The liquid methylated b12 is the best, find it!!! NO doctor ever recommended I take vitamins, I had to pray for the answer.
    • Sharon1375
      Sharon1375 susan43558

      Posted

      Thanks for ur help wanted to ask if the docter prescribed u all the vitamins

    • susan43558
      susan43558 Sharon1375

      Posted

      My doctor(s) never prescribed vitamins. Only one, the one who ordered the MTHFR gene mutation urged me to take methylated folate becasue I am homozygous (positive) for the genetic mutation. When I tell the doctors that I take all these vitamins, they say that for me, it is safe and if it works, keep doing it; but they never prescribed vitamins. I don't think they easily can. Vitamins are not FDA approved and are not seen as medications. 
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