Migraines

[rach73]

Hi,

Two weeks ago I started having migraines out of the blue. I havent had proper full blown migraines repeatedly for years. 2 weeks ago yesterday I had two in the space of three days. Usually I have maybe one a year. In the last 11 days I have had three.

They start with me feeling unwell and my legs really aching, sensitivity to light and feeling more dizzy than usual. The start of them has been difficult to spot as the symptoms do overlap with my Pots and EDS symptoms. These symptoms start around 24 hrs before. Then I lose a pin prick sized piece of my vision - its very subtle like youve looked at a bright light and are left with glare. The pin prick becomes bigger revealing a zig zag line of triangles with red and blue outlines. This will last anything between 15 -60 mins until thats all I can see and then it vanishes and the pain starts. To be honest its the aura the bothers me the most as I just panic. Im usually a pretty calm person but for some reason - well probably since getting ptosis if anything messes with my sight I panic. I cant control it. During the aura stage I also lose my balance.

I immediately get ptosis and my face drops like Ive had a stroke - this is normal for me. I also get pins and needles down my right side and numbness. I get slurred speech and confusion. Again all normal for me when I have a migraine. The really strange thing is no matter how much I drink I dont urinate - so there is an up side at least for a change. It stays like that for 4-5 hours and then I start urinating again!

Ive been put on pizotifen by my dr, started just over a week ago but last night I had another migraine. They are just wiping me out as I am very unwell for two to three days afterwards. I use morphine that I take for EDS as a pain killer and paracetamol. Unfortunately the larger dose of morphine messes with my sleep so Ive been up since 1am this morning.

Does anyone have any suggestions of things that help/ I dont drink coffee, I dont drink red wine, I dont really eat chocolate my only weakness is cheese - however cheese doesnt seem to be triggering them as I had no cheese yesterday and had a migraine!

I am under a bit more stress than usual as my mother in law has just been diagnosed with multiple myeloma a cancer which is treatable not cureable. My husband is having a hard time dealing with this. I want to support him emotionally but I cant do that if I keep having these migraines that are knocking me out for so long.

Any advice would be great.

Thanks

Rach

[Katybug]

Rach,

My POTS neuro (who also specializes in migraine treatment), says that 85-90% of his dysautonomia patients have migraine and that they haven't figured out why it is linked but it is somehow. Is it possible that when your POTS symptoms are worse, it is triggering migraines? Also, pain killers, including opiates will often cause rebound type migraines, so if you have to take your morphine for your EDS, it could have caused a nasty cycle to get started now that you had that first migraine. My best advice is to talk to your dysautonomia doc or find a migraine specialist as treating my migraines became much more complicated with POTS.

[rach73]

Hi Katie,

Thanks for your advice hun. I see my POTS dr soon so will ask him as I really dont want to get migraines this frequently the last one had me in bed for a day and my POTS was awful every time I so much as moved.

Just want to be able to support my husband and I cant do that if I am incapacitated more than usual.

Thank you

Rach