What migraine resources would you like to have?

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.

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.

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. 

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.