Genetic link

Hi all
I get an e newsletter from Migraine Action and today it mentioned this article about reserach carried out by the Wellcome Trust at Oxford University. I know it’s a couple of months old and I’m not sure if any of you guys have seen it or discussed it, but but better late then never!

Hi Sian,

Thanks for posting. Have a look at this post from Christine. I’ve added the paper to it as well:

Coincidentally, I received a newsetter in the mail yesterday from the Brain Foundation called “brainwaves” and they summarised the same study saying:

“The study found when the gene KCNK18 is not switched on, it inhibits a protein, called TRESK, which regulates the threshold of sensitivity of pain centres in the brain. This faulty gene (note, there are probably others) has now been shown to CAUSE migraine. For the first time we have found a clear inheritance pattern in the gene and know it is the cause behind this debilitating condition. A single copy of this mutated gene was shown to occur in 4 generations of migraineurs.”

Best … Scott 8)

Thanks Scott, I thought I was playing catch up when I posted!
I’d also like to say thank you for this forum. It’s the one place that has kept me sane through all this (although some people might disagree!) I’m not one for attending groups in person but do feel in tune with what people write here. I also empathise more now with the addiction clients I work with as they get a huge benefit from the Fellowship (Narcotics Anon, Alcoholics Anon, Cocaine Anon etc) where they meet others who have similar experiences.
Hope everyone is having a good day - or night for those of you overseas.

I didn’t find out, until I had a conversation with my youngest brother about my dizziness, that my mother had perimenopausal onset of dizziness at the EXACT same age that mine started (I was away from home, at college, rather rebellious at the time, so contact with home was infrequent and Mom wasn’t the type to discuss her maladies anyway). He was living at home and vividly recalls how she had to crawl to get from her bedroom to the bathroom because she was so dizzy she couldn’t walk. During my most severe episodes of dizziness, I couldn’t walk either.

Mary Alice - In our family my grandmother, mother, father, sister and 3 out of 4 of my nieces have migraine. I seem to be the only one with MAV though and it co-incided with perimenopause. I sympathise about being unable to walk as I too had to crawl when the symptoms were at their worst and if I did manage to walk it was only whilst holding onto furniture. I also had to sit in a room on my own because the slightest noise was excruciating and lying down just made everything worse. Although life isn’t 100% now I’m grateful it’s as good as it is.

I’m really glad this forum has kept you sane Sian. You guys all keep me sane as well. I simply cannot imagine how we would have dealt with this had the clock been turned back on all of us by, say, 30 years. No intenet. Imagine if we were the same age but it was 1980? We’d be dealing with doctors that probably hadn’t a clue about MAV then. Not their fault; it was just mostly an unknown entity. You’d be told you had “floating woman’s syndrome” … and I’d probably be in a mental hospital because Cipramil didn’t exist then (the only med that pulled me out of break-neck dive in 2003).

I only found out last year that there are/ were family members with this stuff. I never knew my grandmother suffered from migraine headaches. They were the sort that came occasionally and I think they probably stopped after she hit menopause but my Mom recalls her spending two days in a back bedroon, in the dark, and cussing like Gordon Ramsay. :lol: This was totally uncharacteristic behaviour from a little woman, about 4’ 11" who was usually as sweet as pie. It must have made her as mad as a hatter. As an aside she also suffered from OCD and could have had depression going on. In her day it was all swept under the carpet and I imagine she just sucked it up. And she passed it on to my mother who also gets the bad head reactions (but never dizzy) after eating a number of foods – mainly foods dripping in sauces (Chinese) or nitrates in deli foods. My grandmother had 7 sisters, all dead now but I knew them all when I was really young. I wish I knew now how many of them had this going on. I bet there was at least one other in the group that could have had either chronic migraine or even MAV.


I read about “floating woman syndrome” in an article about Janet Jackson - doesn’t that term just drip with condescension?

My mother died before I was diagnosed with this, so I’ve never been able to discuss it with her. But I’ve often wondered what they told her when she saw a doctor about this. That would have been in the mid-70’s, so I’m sure if they did any tests and came up with nothing, they probably thought she wasn’t adjusting well to “the change.” I would love to know what they told her, or prescribed - if anything.

Since I was in high school, my Mom and I talked about and bought pain relievers for our “sinus headaches,” which my neurologist informed me were probably migraine headaches all along (except for the occasional sinus infection headache, and I’ve had a few sinus infections - he said any headache I had with THOSE were true sinus headaches, but all those other headaches were most likely due to migraine). Since I could function most of the time, I never thought I was having migraine headaches. I only recall one headache in my life - and it was during my teenage years - when I was in excruciating pain, and I remember telling my parents and wondering if they were going to take me to a hospital (it was that bad).

But I used to get puffy eyes and a stuffy nose when I got those “sinus” headaches - so that had to be a sinus headache, right? Wrong! Now I know that facial edema and nasal congestion can come with migraine headache. The fact that I have year round allergies just complicated the picture - now I notice that the facial swelling is much more in line with the headaches than with sneezing or itchy eyes or any other allergy symptoms (the nasal congestion can be due to both migraine and allergies, but you have to be a detective to sort it all out…).

Anyway, I’m glad they know as much as they do about our condition - at least I got a proper diagnosis (and successful treatment that doesn’t have horrendous side effects), while my poor mother never knew what hit her - but I will be SO glad when they know a lot more!! We need a better understanding of this, and better treatments.

Years back, they tended to blame it on the ears hence all the ENT tests performed over and over again.

When I first got this, they hadnt a clue what it was. Luckily, in those days, I just got the severe vertigo attacks and was OK in between. I didnt know anybody with this condition and thought I was probably slowly dying from some horrible illness, so in between the attacks, I did parachute jumps etc. figuring if I was going to die I might as well enjoy life while I can. So I suppose there was a positive side :?

There isnt any of this in my family. My Grannie was fit as a fiddle into her 90s, a very practical down to earth woman, my Grandad owned a pub, bit of a rogue, made his money smuggling wine into Austria in a hearse in the war, certainly nothing like this going on with him. My mother who came over to UK from Austria having married my dad at the end of the war has suffered with her nerves but again, not this sort of stuff and my dad lived a very healthy life. My brother gets a few headaches.

Cant figure out where this crap came from, apart from I have had a huge amount of stress in my life.