Migraine Reupdate

[Debbweb01]

Hi all!!! Hope this finds u well and HAPPY! I still have Migraine and Neurologist told me to go to my eye doctor since they told me I have ocular migraines! So I shall call today for an appointment! My Famous Heart Doctor, whom we both have this huge crush on each other, has give me my 3rd BP med that I didn't pass out cuz of other meds I take that had serious drug interactions with all my other meds that my EGYT doctor prescribed for me in first place! Oh by the way I slipped when I was talking to my heart doctor and called him, "HONEY!" He laughed and just kept on talking! When I worked at his hospital, I use to follow him around! He saved my life a few times! Gota ask a question~Does everyone with APS have drug sensitivity! My sis has drug sensitivity too!!! I just don't get it??? Why do we get migraines? Why doesn't mine go away??? They tried prednisone, Depakote, and only Excedrin Migraine works! It never really goes away! Mary I'm going to Rheumatologist that specializes in Sjogrens! I'm going to ask her to test me for Hashimotos! I asked my doc and he said NO! My sister swears I have thyroid! I want to get to Bottom of this! I will put on My Cape and go flying to do this! My Superwoman Cape, cuz that's what my friends call me!!! Omg I don't wana be SUPERWOMAN anymore!!! Godspeed

[Ray46]

"drug sensitivity" - hell yes. Before stroke/APS I could take anything they gave me, antibiotics, painkillers, whatever - didn't take much, wasn't ill much, fair few lots of antibiotics over the years though. All with no problems, ever.

After stroke+APS diagnosis I have had weird and unusual reactions to:

- BP meds (various, including rare joint/tendon reactions)

- statins (tried several, all very bad in different ways)

- antibiotics (various, bad reactions in addition to INR trouble)

- warfarin (bad stomach / gut reaction)

- Lansoprazole (given to "fix" the warfarin stomach reaction, made everything worse)

- painkillers (paracetamol does nothing, can't take ibuprofen or aspirin obviously, reacted badly to opiate - codeine).

I've gone from being able to take anything to having red warning flags all over my med records and having to be really careful. Some of it may be interactions with the drugs I am on, warfarin in particular is bad for that, but I am pretty sure a big part of it is having a ****ed immune system. My simple layman explanation of APS to others is "basically my immune system is attacking my blood" - when you think about it that way, "drug sensitivity" ain't at all surprising.

[KellyInTexas Administrator]

Debb and Ray,

“Sjögren’s syndrome in particular and and APStend to carry with it a much heightened sensitivity to drugs/ allergens/ anesthesia/ food sensitivities.” -Dr Jill Schofield paraphrased from my memory

“ 50% of APS patients test positive for MAST cell activation syndrome.” - Dr Jill Schofield

Both of the paragraphs above paraphrased from my appointment with Dr Jill Schofield, Rheumatoligist, Denver, Colorado.

[MaryF Administrator]

Well done with your progress, get your Rheumatologist to run a panel like this if you can persuade them: medichecks.com/thyroid-func... As if not enough tests are done, you may not get the true picture. MaryF

[Debbweb01]

Ok Mary thx Thx Ray and everyone! Omg I'm intrigued lol... Godspeed

[tifftriesit]

Try Aimovig migraine shot!!! 3 months migraine-free for me!

[GinaD]

I just read the wikipedia article on mast cell regulation syndrome. Yep. Rhymes with me. Also provides a clue as to why some of my drug allergies ( confirmed by 3day allergy tests) vanished after Cleveland Clinc put me on a trial low histamine diet and established an intolerance to cashews. After reading this, I will not eliminate but eill moniter my tomato and eggplant intake. This site is wonderful!

[Debbweb01]

Thank you all! At leg fitting for my new leg! Getting adjustments! I'm tasting all over my leg and leg guy thinks it's cuz I'm in Sjogrens flare??? I guess Sjogrens has to do with Dry Skin too! Can't seem to moisturizer enough these days! APS flaring with migraine! My sister says it's micro- Embolies? I wish I knew!

[Debbweb01]

I've heard of Aimovig I'll ask Rheumatologist? Or Neurologist?