In need of some advice

Posted , 8 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I visited the migraine clinic early this year, they said it may be medication over use, they tried to wean with Naxporen, 3 times a day, Proponal, helped 4 days after that the pain was so bad I had to take my Triptan.

tried wet cupping on top of head, and fever few was really painful but had no headaches for 3 weeks, bringing me to April.

since then migraine every day, take magnesium, and fever few , triptan daily, Dr only wants to give 12 triptans a month.

Pains getting worse ,migraine clinic has offered botox injection £650.(no guarantee will work) was hoping to try and have done NHS, but my next appointment is August 2016 with specialist........

Should I give botox  a go will have to get a loan

Was thinking rehab to help my overuse (if that's what it is)

Does any one know off Rehabs in London England

please advice, desperate had enough of the pain.........

1 like, 15 replies

Report

15 Replies

  • Posted

    Firstly I am so sorry you are in so much pain.  I alos have  chronic migraine and had to retire becasue  of it.  I have tried everything and the only treatment that helped is botox.  You have the right to have this on the NHS so speak to your GP.  If they try to fob you off, be very firm and bring someone with you if need be.  If you have to, contact the GP commissioing group and make a formal complaint as you have the right to this treatment without paying for it.  Also contact your MP and if necessary your local councillor with responsibility for the 'health and overview scrutiny function' in your local council.  Come back to me if you need more advice.  Aslo look at my post on the research on tyramine in foods that  can trigger migrain and the reason for that, I have found this to be of some help. Good luck. 
    Report
    • Posted

      Thank you so much, your advice is re assuring.

      the migraine clinic did write to my Dr, to suggest Botox, they said they could not, but armed with your advice, I will go back to them, and follow your steps.

      I did find your Tyramine advice really helpful, and have stopped some of the Foods, I was eating.

      Thank you so much will be in touch, really appreciate this.

       

      Report
    • Posted

      You are most welcome.  I should have also added you need to be under the care of a consultant neurologist as they seem to be the consultants with the best competencies to treat migraine. Dr Tim Young at UCLH is fantastic and is also a really nice kind man.
      Report
  • Posted

    Hi hun, it depends on what they're saying you're over using, Triptan made me extremely ill so I can't speak for that but I know over use of codeine can cause migraine. Do you take any preventative medication? Is there any pattern to when you get them or triggers?

    Jane

    Report
    • Posted

      Hi Jane, thank you for replying, the only medicine is pregablin, no patterns just every day and worse before my cycle, tried the pill, but made my head worse.
      Report
  • Posted

    Dear Shaheen,

    I sympathize and identify with your intense pain.  I am in the U.S.  I have had migraines for over 13 years and by now am sure rebound headaches are at play.  I take triptans (Relpax) but can take them only three times a week.  In between I take Excedrin for Migraine, which has aceteminophen in it.  Advil for migraine has aspirin in it.  I have had two Botox treatments, CT scans, hospitalizations, spinal taps, brain scans, sinus scans, pain management treatment which, although somewhat effective, had side effects that made it necessary for me to get off it.  I too am desparate for relief.  I have been told to eat only gluten-free food, dairy-free food.  Cannot plan any activities because I never know when I will be in bed with an intractible headache.  Am currently taking Topamax which is doing nothing.  The doctor says it may take two months to take effect, but I am not waiting that long.  He says he may need to increase it; well, he'll get the chance today, one month later, as I am fed up.  Can't help you with rehabs in London but will encourage you not to give up--keep on reading, looking, visiting doctors. There are new magnetic devices available on the internet but they are costly.  The main thing is no one medication or device or procedure works for us all--we are all different.  Just don't give up.  We all sympathize with you.  Keep going.  One day at a time.

    Marcie

    Report
    • Posted

      Thank you so much, for your kind comments really appeciate it

      soothing, hope you find something that works for you soon.

      Im the same miserable, don't feel like going anywhere as you don't know when the pain will hit

      Thanks you for responding

      Report
    • Posted

      Botox had been mentioned to me at one point and the idea gave me the willies. Based on the posters question and my own curiosity I would like to know how those 2 botox treatments worked out for you? Did they have any effect and how long? Were you glad or regretful of getting the botox?
      Report
  • Posted

    Hey, I'm so sorry you are having to deal with so much pain. I am in the US and I've had migraines for over 40 years. I've pretty much tried everything. For the last several years it has started effecting my left eye. I've always had the flashing lights, sensitivity to light, and floating spots. Most recently though my left eye began twitching just very slightly but it is enough to cause my optic nerve to be very sore and throb a lot. I've started seeing a neurologist who specializes in migraines. I have began taking Noritripalin 10mg a day. I tried to increase the dose but had bad side effects. I also began taking Rizatriptan 5mg with a Fiornial tab 100 at the onset of the headache. If the headache is still there after two hours i take a second round of these meds. 

    The most major change in the treatment of my headaches is adding Advan only when the migraine meds fail to work. I usually start with 1mg and take an additional 1mg if I still can't go to sleep. This is a game changer for me. Before when the headache was so bad I would be awake all night crying in excruciating pain!  Now I can take the Advan and go to sleep. I realize that Advan can be addicting so I only use it when i can't rest at all. 

    My next step in my current treatment plan is to start a low dose steroid for five days when my headache lasts for more than two days. 

    I am still dealing with headaches for over half of each month but it is definitely better than then before when they occurred almost daily.  Hope you can get some relief with your pain. 

    Blessings:-)

    Report
    • Posted

      Hi Donna, thank you so much for replying, I am really glad you are finding some relief, I will look in to Advan, and mention to my Dr, if they listen.

      Also noted the other medication hopefully discuss with the DR

      Thanks again.

      Report
  • Posted

    Sounds like medication overuse to me as well. The triptans are not for preventative daily use. You are taking magnesium and feverfew as preventative. Triptans are to be used only when you have an episode. So they may be doing you more harm than good at this point.  If you are a woman, have you taken a look at balancing your hormones? Also diet triggers can be a cause, particularly red wine, aged cheese, msg, smoked/cured meats, etc. What about your stress level? Stress is probably the number one factor in migraine. Try relaxing more, exercise, and prayer and meditation. This is only temporary and you will get thru this. You are not alone. We have all been there. I would pass on the botox personally as it was used in biochemical warfare back in Vietnam. Would not want that in my system. Migraine is a threshold condition and we need to approach it from many angles.

    Best,

    ​Patricia

    Report
  • Posted

    I used to get migrains everyday. I now take a list of vitamins and stopped drinking any alcohol at all (not assuming you do.) I had a blood test called the MTHFR gene mutation test. I was positive for the gene. I guess it's common to have this gene mutation. Get the test if you can. I have to take the methylated vitamins. Basically, my body does not methylate vitamins, I have to take the active forms. These vitamins add up financially, so before you buy the full list, you might want to get the blood test. If you don't have the gene mutation, you can take the non methylated cheaper versions. Folate, not folic acid, b12 methylcobalamin, not cyanocobalamin, iron in the form ferrous gluconate, not sulfate, b complex, p5p, curcumin, not tumeric.... the list goes on vitamin A,D,E and a probiotic. If you are constipated, use miralax. It's a powder you put into water, it takes a few days to activate but pooing will be smooth! Talk to a doctor before you do anything on this list becasue I am not a doctor, just a migraine sufferer who was on a lot of meds and now NONE! Get the blood test. I pray for you and all others on this site.
    Report
    • Posted

      Oh this is interesting, never heard of this before.... thank you so much, will follow up on blood test and start from their

      thank you Susan

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up