Migraine can be responsible for distressing symptoms throughout the body. This is interesting!

[toyfoof]

I just started seeing a new migraine specialist who is actually treating my whole body. She diagnosed my IBS-D as MCAS and put me on cromolyn sodium (it’s helping), plus she diagnosed me with POTS and EDS. We’re attacking the migraines with a number of treatments, because I’ve been overusing sumatriptan.

Wednesday she gave me nerve blocks in the head and neck and trigger point injections in the neck/shoulder, with the idea that my headaches could be from over active nerve pathways and doing the blocks/injections calms them down. This makes sense to me because ME/CFS feels like an overreaction in my body to exertion.

I crashed hard yesterday (day after the injections, which in addition to being probably a shock to my system, involved a two-hour drive each way (my mom drove) and getting lost multiple times in the hospital so a lot of walking). But today I’m feeling okay. I’m hopeful these nerve blocks help.

The new CGRP drugs aren’t helping me at all. I do the monthly injection (have tried 3 different brands) and have pills for acute attacks (2 different brands) which don’t do anything.

 

[Mary]

I just started seeing a new migraine specialist who is actually treating my whole body. She diagnosed my IBS-D as MCAS and put me on cromolyn sodium (it’s helping), plus she diagnosed me with POTS and EDS. We’re attacking the migraines with a number of treatments, because I’ve been overusing sumatriptan.

@toyfoof - good luck with your new doctor, she sounds rather amazing! What a concept - treat your whole body! What type of doctor is a migraine specialist - does she have any specialty like neurology or rheumatology or some other ology?

 

[toyfoof]

@toyfoof - good luck with your new doctor, she sounds rather amazing! What a concept - treat your whole body! What type of doctor is a migraine specialist - does she have any specialty like neurology or rheumatology or some other ology?

Yes, she’s a neurologist who specializes in migraine. She’s young, I think fresh out of fellowship, so maybe there’s hope that the new generation of doctors will be a little more holistic and open minded. She was so pleased when I told her my IBS was better and we laughed about how it took a neurologist to fix my intestines.

 

[Wolfcub]

Yes, she’s a neurologist who specializes in migraine. She’s young, I think fresh out of fellowship, so maybe there’s hope that the new generation of doctors will be a little more holistic and open minded. She was so pleased when I told her my IBS was better and we laughed about how it took a neurologist to fix my intestines.

I'm really glad to hear your IBS is a lot better @toyfoof and I think you are lucky to get a doctor like this. Yes, maybe the new medical generation will have wider thinking. I hope so.

 

[toyfoof]

It’s now Sunday and I got the nerve blocks on Wednesday. I crashed Thursday, but since then have been feeling pretty good — a bit above my baseline.

On Friday I did my PT exercises using the next step up bands — so more resistance on all the exercises. I prepared for a crash, but none came.

Yesterday (Saturday) we went for a long drive in the Jeep with top down in 100° weather, with some outdoor walking in masks. No crash today!

And except for one mild headache Friday, no migraines!

I wonder if there is something to these nerve blocks calming the nerves, perhaps they are also short-circuiting the frenzy that causes PEM? I wonder if I can get the blocks all down my body! Just calm the whole thing down!

Anyway, 3 days isn’t much of a proof of improvement, but 3 good days during which I’ve exerted is rare, so I’ll remain cautiously optimistic and see how it goes.

 

[andyguitar]

I wonder if there is something to these nerve blocks calming the nerves, perhaps they are also short-circuiting the frenzy that causes PEM?

I think the nerve block works by reducing the level of sensory signaling to the Trigeminal nucleus which is part of the brain stem. Which is why nerve blocks are used for facial pain. So yes they calm nerves down. When it comes to reducing PEM you might have to wait and see. All sounds positive to me

 

[Booble]

Reviving this thread to see if anyone wants to talk migraine auras with me.
I usually get the classic scintillating scotoma which starts as a thin line of light then grows into a snake of a light in the shape of a C and then goes off to one side.

Today I got a very different weird phenomenon that sounds a little like what was mentioned above with the silver lights. It filled up a larger area of my vision -- it kind of rolled in -- was silver and black and weirdly familiar to something else that I can't come up with. It was scary. Maybe like a strobe light? Lasted a little bit shorter time then the normal 20 minutes scintillating scotoma. Maybe 15 minutes?

This is the 3rd time I've had this type. The last one a few months ago and the one before that several years ago.

This one occurred directly after having lead 3 and 1/2 hour presentation on a video call. Which also means it came after me having worked on it over the weekend. And didn't get much sleep last night. This is a special once per year "off-site" so it will be running each day this week for about 3 -4 hours. I'm leading all of it.

I was enthusiastic and feeling good after it ended. Husband and I were discussing it - very positive -- and then it kind of rolled in. Dammit. I'm used to my regular scintillating scotomas but this new kind is even scarier.

Once again is this my (anti) friend adrenaline?

Can anyone relate or commiserate with me?

 

[Booble]

Oh boy. Not much sleep til close to wake up time and now heavy duty "clogged" head. I never really realized how much PEM you can get from mental exertion. I mean I knew but it sucks when you are experiencing it.

Editing to add (since I'm talking to myself): I made it successfully through today's meetings! I drank some salt water and put some salt under the tongue a little before the meeting and that perked me up. Probably placebo effect but being a POTS/OI person who knows. At the end of the meeting I also tried to consciously calm myself as things were closing because it's AFTER extra stimulating events that I migraine or PEM crash.