What migraine resources would you like to have?

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I'm working with a group on migraines and what resources migraine sufferers would like to have.  Maybe something that doesn't even exist yet, or somethings that do but maybe they are not all tied together.  Really any and all ideas are on the table.  We've got a a few ideas going but wanted to reach out to get suggestions from a broader group.

Thanks for any feedback you all can give.

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14 Replies

  • Posted

    Hi rik, I have Hemiplegic migraines (first on LHS now on RHS) as well as Hereditary Spastic Paraplegia. This puts me in a category of being 0.001% of the population. I am willing to try gene therapy, CRISPR Cas9. My genetics are of the Swiss-Bavarian-Prussian variety, which I can date back over 1100 years. My blood type is A+ the kind all biting insects love. If CRISPR gene therapy can increase the uptake and release of neural transmitters and stop my muscle spasms throughout my body, I'll give it a try. I have been taking 600mg of magnesium citrate (150mg every 6 hours) for the last 3+ months, doesn't seem to help with HM, does seem to lessen HSP. I was on Creatine, 10-15 years ago in order to put on weight, cycled as recommended in 3 years gained 50 pounds of lean muscle mass. I have been off for 5 years and down 20 pounds to a comfortable 195. Not sure if Creatine has any effect on the thinning of Corpus Callosum or narrowing of the mylar sheith or creating plaque, blocking neural pathways. Anyway, I would like to try something before these issues get worse, thanks for your time.

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  • Posted

    A couple of other things of note, I had a severe concussion when I was 10 or 11, don't remember grade 3 & most of 4. Separated my rib cage almost broke my neck and back when I was 14. I have a lump of scar tissue on my neck and one on my lower back. My muscle tissue is very sinuey, to the point where massage won't see me. Like trying to separate wire rope is what I get told.

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  • Posted

    Hi Rik, I am not sure what you mean by 'migraine resources' but I wanted to comment on your post because I have suffered horrific migraine symptoms for years. I only got my symptoms under control once I was diagnosed with a form of vasculitis. 

    I see a lot of people on here with similar, if not identical, symptoms and general health concerns. I am amazed that specialists dealing with this area rarely make the link to vasculitis. Even specialists who should know better, are not making the possible links. Some are even telling people they can rule out vasculitis with blood tests which is not true. It is a very rare illness I know and I am aware that some specialists rarely come across these patients. But many of us are suffering needlessly because there is no joined up thinking with regard to these problems. 

    Neurologists are stumped. Gastroenterologists are diagnosing people with IBS right left and centre when they actually have a complicated disorder with huge impact on daily life. Have these specialists never been taught about vasculitis in med school? I think they have and yet go on ignoring it and ...even worse....offering people meds like amitriptyline which make it worse. 

    A new approach is needed to give people with these dreadful migraines a possibility of a normal, symptom free life. People are miserable and being turned away continually by drs who just don't do joined up thinking about the possible causes of migraine with eye problems and when presenting with a history of other illnesses which fit the profile like skin involvement and gastro symptoms. 

    This may not be what you posted about I am not sure, but as someone who struggled for years to get a diagnosis and seeing some of the comments on here from people with similar health conditions I am frustrated by the lack of understading of this particular type of migraine. 

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  • Posted

    I would just like the consultants to delve more deeply into the possible causes.  I have suffered for about 40 years, I'm 49 now.  Have been to numerous specilaists NHS and private and all they want to do is fill me up with drugs, one in particular nearly killed me (Topiramax) and because of that I am loathed to try anything else, so I am forced to just go it alone without any help and just keep battling them and using triptans as and when I need them.

    Unfortunately it's one of those conditions that will always be treated this way, because we look healthy that means we are healthy.

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    • Posted

      I so agree with what you say as someone who suffered like you. I was diagnosed with auto immune disorder. Seems to me there are lots of people on here with something similar to me but this is not being considered by healthcare professionals who are turning us away to suffer pretty horrific symptoms. Just not taken seriously at all. Migraine can be a sumptom of much wider systemic disease. Why is it so ignored?
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    • Posted

      Margaret

      I also have an auto immune disorder (Lupus SLE) and they have never once suggested any link to it.  It is just so frustrating isn't it??

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    • Posted

      Aaargh...that's so bad. Can't believe it and yet I can. These issues are so badly treated. I don't think I can paste a link here but will try. But please just google Lupus and migraine. Where do you have your treatment for Lupus. That is terrible. I am quite shocked.

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    • Posted

      Well, they say that I am in remission at the moment, but I am tested about every 5 years and it always comes back positive.

      I was diagnosed when I was about 20 and have never had treatment or medication.  I was basically abandoned because the main symptoms (stiff joints) had stopped and I have never been offered any other support.

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    • Posted

      Well thatvis awful. Migraine like that is a major problem with Lupus. You need to be referred back to hospital. I don't know where you are based but there is a great specialist called Dr Desmond Kidd who is at the Royal Free in London but also has clinics elsewhere. He is a neutologist with special interest in Behcet's and Lupus and the role of inflammation in these sorts of migraines.

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    • Posted

      Thanks for that Margaret, I'm in York and there is only one migraine specialist and he is the one that put me on Topiramax that nearly killed me.  I returned to my GP about 3 weeks ago to see if there was anyone else and they haven't got back to me, presumably meaning there isn't.

      I'll check Dr Kidd out and see if he has any clinics near me.

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    • Posted

      Well there are docs you can see in York. You need the inflammation under control to stop migraine. Why don't you contact vasculitis uk and speak to them

      Asl them who you can see locally. Forget neurologists or headache docs they are of no use to uou you need a vasculitis specialist x

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    • Posted

      Thank you so much for your help Margaret, I'd never even heard of vasculitis let alone suffer from it, you have been a great help.

      Hope you have found relief for your problems aswell?? x

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    • Posted

      Hi yes I have great treatment. Symptom free for3 years. Lupus is a form of vasculitis. I have a different form Behcet's. Tratment is available. I will look for a specialist and message you

      .

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    • Posted

      Oh that is good news for you.

      Just shows how much I know about Lupus, I did do a lot of research in the early days, pre-internet, so it was limited really, but because I have been led to believe I am in remssion I tend to forget I have it and associate the headaches/migraines with something else.

      Certainly never heard of Behcets, I will Google straight away

       

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