☢️ headache update- 🤷‍♀️/Vaccine reaction? - LUPUS UK

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☢️ headache update- 🤷‍♀️/Vaccine reaction?

DRunnerchick profile image

Happy Friday!!🎉🎉🎉💃🏻💃🏻💃🏻🕺🕺🕺

It has now been 15 days since this headache started. I have been on Prednisone for 8 days. Tomorrow is my last scheduled day of 20mg. (60mgx3days, 40x3days, 20mgx3 days). Headache is definitely better but still here. General systemic symptoms receded with higher dose and my body really appreciated the increased prednisone. The blurred vision in my right eye has stayed the same— neither better or worse. My blood BP has returned to baseline. 👏🏼. The sternal “ick” is gone so if I could just get rid of the headache…

•ESR/sed rate 15 (nl 0-30, 11 last month- mine is never raised. 15 is the highest it’s ever been for context)

•CRP <2.9 (nl <2.9)

•MRI showed one FLAIR hyperintensity potentially caused by sequele of infection of inflammation but when compared to my other scan it might be similar or same. Of visualized portions orbits appear normal and intact ( radiologist speak for— your crown work is interfering with my ability to see your anatomy)

So, the working theories according to the PA notes and talking to the Wizard…

Intractable Migraine

Reaction to Pfizer BioNTech vaccine

GCA ((less likely because my labs and imaging was neg but didn’t have a temporal biopsy)

The headache doesn’t feel like a migraine. It doesn’t respond to Triptans. It’s just awful. It completely wrecks havoc with my SPS and causes whole body spasms. It’s a frightening thing! I’m not going to lie. It’s exhausting to fight your body with the constant “ push me, pull me”.

And while I was on the phone with the Wizard’s office, they had to change my regular appointment and push it out another 2 weeks because he will be out that week. I’m probably driving him to drink 🍺 And he’s scheduling his bender now!

30 Replies

Hmmm - not convinced by his reasoning I fear. 3 days of 60mg is a bit on the low/short side. However - see what happens when you stop the pred.

The labs/imaging aren't conclusive, 20% have normal labs. Nor is the biopsy, only positive in about 40% of patients. But I'd really really prefer it wasn't GCA so I hope they are right!

DRunnerchick profile image
DRunnerchick in reply to PMRpro

Pro-

The Pred Rx (prob for insurance purposes) said intractable migraine, and at that point, I think it treated both since they typically serve up the steroids anytime you have eye symptoms when GCA is in the DDx.

The Wizard had his assistant call me with my lab results (before my MRI) and she told me it was not likely GCA. But, I also know that he is the one who diagnosed me with SPS with negative antibodies. He’s probably taking the “tincture of time” 🤞🏼stance. If it persists. I’ll get my in touch with his office and make an urgent appointment with him next week. *not a migraine * FTR, my migraines are well controlled with topiramate and supplements (the usual research backed B2, COQ10, Magnesium). He’s good at what he does. He probably needs feedback from me. Meanwhile, I’m doing research on prednisone with SPS.

Treatment for SPS is like the Wild West Just about anything goes. They throw anything at it and see what sticks- and for how long.🌸

D🏃🏽‍♀️

PMRpro profile image
PMRpro in reply to DRunnerchick

If the visual stuff gets worse - don't wait, it is a medical emergency just like a heart attack or stroke.

So sorry you are still suffering so. From my history of migraines since childhood all I can offer is that, when I was in the UCLA hospital with Intractable Migraine for over 2 weeks, I was on IV steroids. I didn't respond to a Medpac at home.About GCA I have the impression you can have no positive inflammatory markers. PMRpro could tell you. Or you could ask the question on PMR/GCA Uk.

PS: I see PRO was replying while I was writing.

My 17 days in the hospital for migraine was after 3 weeks of headache, just for reference. Also, not all migraines respond to triptans, esp Intractable ones.

DRunnerchick profile image
DRunnerchick in reply to Joaclp

Thanks! IV steroids in the ED was my other option. I deferred to his preference. Secretly, staying out of an ED at all costs is always my endeavor! I especially want to steer clear now. That must have been a nightmare for you!!!🙀🤯 Was that at Harborview? Old stomping grounds…another lifetime and stories ago.

Some people collect vintage cars 🚗, or antique furniture 🪑, at this rate, I’ll be collecting new diagnoses faster than the Flash can get here!⚡️Take care and enjoy your weekend!💫🌻D🏃🏽‍♀️

Joaclp profile image
Joaclp in reply to DRunnerchick

No, Westwood.

That sounds awful and am sorry that you’ve had to deal with this for some time. It sounds like you’re starting to get some relief which is wonderful! I hope all the remaining symptoms go away very quickly. There seems to be so much good coming out of the vaccine and it has helped alot of people. Unfortunately like so much else, there can be side effects.

Hi DR. So sorry to hear about your vaccine aftermath. I have a lupus friend with APS going through the same thing. Headache after vaccine. She said decadron helped a little bit but it has been refractory. Have you tried Benadryl? Sometimes this helps me after IVIG and helps me sleep as well.

I do hope you don’t have GCA. That would be horrible. Sending hugs.

Yep, exactly. I was going to say exactly the same. ( tell your friend with APS I experienced the same with vaccine- but with first dose. ( Pfizer.) had a better time with second. ( but ran 102.5 - only for about 12 hours.)

My rheumatologist said across the board autoimmune patients were having a little stronger reaction to them, but not “adverse.”

Thanks for the tip! I’m out (realized my was way out of day when I replaced my EpiPen this week)🙀. I’ll pick some up and try it tonight. Maybe it will fight off the pred effect and actually let me sleep when I want to sleep 😴. Hugs 🤗 backatcha!💐💫

D🏃🏽‍♀️

Two nights of Benadryl didn’t help, but I tried. Thanks for the suggestion. I appreciate it. I’m on day 3 post Prednisone and back to full full body spasm, headache day 19. I give it one more day.✨

D🏃🏽‍♀️

Oh DR. I wish I could take your pain away. Headaches are so debilitating and without sleep, I feel for you. 19 days with one would drive me mad. Sending you more healing hugs. Hope you find some relief SOON.

Oh, it did give me blessed 😇 sleep! Best sleep I’ve had. One of the things about SPS is that sleep usually calms the spasms down. Sometimes it is the only way for me to find relief. So in this way, it’s double relief.

D🏃🏽‍♀️

I’m on month 3 of post-vaccine headache. Daily aches are part of my SLE symptoms, so the doctor basically explained that the vaccine is causing a mega flare or really a full return of all my symptoms.

Like you, we’re doing steroids but also adding Emgality (brand name). It’s a monthly shot and used for migraines. I’ve used it in the past, however, to control headaches and I have to admit I was really impressed by the results and no side effects.

I think there are others like it as well. Perhaps something to look into?

Hope this helps!

KellyInTexas profile image
KellyInTexas in reply to katidid

We are doing steroids and Aimovig 140.

My daughter does Aimovig 70 for her Migraines.👍🏻

DRunnerchick profile image
DRunnerchick in reply to katidid

Thanks! Good info. I have read a few anecdotal cases re: headaches and/or flares w/ AI diseases but so far, of course, it’s all correlation. No one knows what’s going on exactly and there’s supposition…

I don’t regret getting vaccinated. I’ve had friends die. I have a housemate with Longhaulers who’s been off work since August. I even waited a bit to see what the real time reactions were, knowing I’m in a special class of patients (only 6500-7500 WW) with unknown factors. On the one hand, I want to see my 80 y/o mum and not kill her, on the other, I don’t want to die a horrible death ☠️ from COVID-19 either. I did get a lighter case of a similar headache around the same time as the first jab. My hands were bugging me so much, I went in to see my PCP about it. That’s why I know what my ESR was last month. I need to see if I can pinpoint the timing and keep what you said in mind. This headache really doesn’t resemble a migraine though. Not light sensitive etc. Makes my hair hurt. All good info and discussion points going forward. I’m on the Migraine forum too. 🌺✨😘

D🏃🏽‍♀️

katidid profile image
katidid in reply to DRunnerchick

Agreed, 💯 supportive of vaccination. Same experience - too much death and suffering. It does suck that I was in a better place before the vaccine, but at least the docs know now that the vaccine can cause a range of flares and seem better prepared to help us get through it.

DRunnerchick profile image
DRunnerchick in reply to katidid

K-

I wish I personally had your confidence in the outcome. I definitely don’t. I don’t have SLE, not that lupus is easy, far be it (don’t come for me) but at least people have heard of it and don’t think you made up a disease to get pain meds.

Scenario: Urgent care- i.e. never before seen provider who happens to be a PA at UNI system w/25 years experience. Introduces herself and Says she read my record as she enters the room (Lie#1, you read, what, one paragraph? An entire progress note? Paa-lleezzee!!!) She immediately starts running thru COVID symptoms

Me: It’s not COVID. No known exposure. I have a dry cough as part of systemic sx. Only occasionally. History- Stiff Person Syndrome…

She interrupts: What’s that? Is it real?

Good thing I had a mask 😷 on! My head hurt so much I didn’t know whether to get up and leave, cry or just lay down and curl up in a ball on the exam table.

Me:Yes, it’s real. It’s like having tetanus whenever your body want to but there’s no vaccination. Agonist and antagonist muscles are activated at the same time. Whatever is going on in my head is pissing off my SPS. Can you figure it out and make it stop? Nope, just a patch.

Her offer was ketorolac. Imagine her surprise when I didn’t actually want it because I wanted to figure out why it was happening.🤔 I hate shortsighted thinking. My disease is progressive. I don’t take anything for granted. I may never get function back.

No offense but I’m a big X-Files girl…Trust no one. So far my Wizard is as close as I get. All our diseases suck! We all have to deal with them and I try to help where I can. I try not to waste my education and I’ll be darned if I’ll let anybody stand in my way. I still have things to do and purpose to fulfill. #feistyfriday😘💃🏻

D🏃🏽‍♀️

Please send me a link to migraine forum thanks.

If you search under Migraine under the communities, you’ll find there are two of them.

Will try thanks

Hey DR🏃‍♀️!! Sounds like you have a lot going on whilst keeping the Wizard queuing at the bar! I hope the medics get to grips with your headache soon and that it is not GCA. I had a normal ESR but a raised CRP and a constant head “pain” rather than “ache” that refused to respond to pain relief. Positive ultrasound proved the diagnosis conclusive - and now I’ve just collected it’s sister disease PMR! 6 months of all over body pain and stiffness found me in a PET CT scanner and back on higher doses of Pred. Good luck my friend and keep us posted. I found the PMRGCA forum really helpful. 🍻🌺🤗😘🤗

HW-

When I say the headache is better, I mean, it isn’t the overall pounding occipital pressure combined with my temples and my Right eye symptoms, it’s only my temples and my eye.

No US. No PET CT. With my SPS, how would I know if my body hurt or was stiff? 😉 I’m a collector, but I prefer first edition books and art. I have a boxed first edition of “Pollyanna”. 🙌🏼 I prefer that to collecting a laundry list of dxs.

D🏃🏽‍♀️

I still have a headache after jab 2 early June. I did after jab 1 as well. I was given the Oxford AstraZeneca. It’s worse than normal migraine I have to say!

SD,I have to agree with you on it being worse than a normal migraine. If this is a vaccine headache. Did you find the migraine forums? I tried to link them but it didn't work. That's why I sent you to the search function. Each of them have different "flavors", so see which one you prefer or use both.

DRunnerchick

🏃‍♀️🙂

I think it’s cluster migraine initiated by the vaccine hence it’s slightly different. GP said I had to ride it out …. 😟

Steroids may be great but they can cause eye problems not least glaucoma . Go to Specsavers and get the pressures checked. Your results are low to be on a high dose. This is the weirdest thing but I stopped decaffinated drinks and my headache went

I had terrible headache day 9 -16 after first AZ jab at the end of March. A fortnight ago (three months on) I had very tender scalp GCA type headache affecting right eye - could not get steroid as GP said my ESR a month earlier was normal. Only had two ESR in 10 years...

It has been scary, as awaiting my first rheumy appt I took aspirin to try a resolve everything- been on aspirin now three months (not sure whether it can reduce ESR). Today just had a slight background headache - so hoping it might now resolve.

I wish I had made more detailed notes on my headaches recently so could share with my rheumy. Have not had such bad headaches for a long time.

Sounds similar. I’m in the USA 🇺🇸 and was part of the V-Safe system as part of the CDC’s monitoring system of the vaccines since I got my very first Pfizer BioNTech. The monitor system only goes on for 6 weeks to though.

I was on the 9 day taper but I think it was too short to really do much. I did feel better all the way around with systemic symptoms and it did lighten my headache until I dropped down to the 20mg. Prednisone. But, it couldn’t be ruled out that it wasn’t migraines since I don’t get auras and I haven’t actually seen my neurologist, it’s all been done through the portal.🤷‍♀️

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