I have just been listening to a podcast about Migraines and they suggested that there was a possible link with Autoimmune conditions. Out of curiosity I wondered if many others had a history of migraines.
I would also like to take this opportunity to say a million thanks to everyone on this forum. It has been such a fantastic information tool on my journey. It has helped me so much at avoiding the slippy patches so I don’t fall flat on my face on this journey😁
I have been having awful headaches and linked it to reducing predisolone, a lot of stress as well checking blood pressure. I had a very thorough eye examination this morning and I’m having a lower reading strength for when I use my iPad, the distance being the problem and she has mailed my g.p. saying eyesight isn’t the problem but could bp be checked.
So before we all jump to conclusions like me and blame pred. It could be other reasons.
I do sympathise as it’s overwhelming despite pain killers.
Oh for the life we all had before polymyalgia!!
My migraines are since childhood so I was interested to know if others had a previous history of migraines and does it make a person more likely to develope an autoimmune condition later in life
Hi ! I also have had migraines since the age of 16 😔 They were so debilitating that I could only try and sleep them off in a darkened room and couldn’t function at all ! I still have them , 2 in the last 2 days , But I can now just close my eyes for 10 minutes or so until the flashing zigzags disappear then carry on with a bit of a sore head - I was diagnosed with PMR in March 2020 .
That’s really interesting because too have a history of migraines since childhood but have got better in later life but still get the odd one when I get stressed! I was also diagnosed with PMR in 2022!
I have never had migraines, in fact I don’t really get any headaches.
Yes absolutely. I have had migraines from about 20 till 50 years of age, always related to the onset of my period. Three whole days….
They stopped after i stopped having periods. I often wondered whether the pmr was related to the migraines.
Kaaswinkel adds: And yes I have Hashimoto disease an auto immune hypo thyroid condition.
Here here to your comments about this fantastic forum Shiv! I have had bad headaches/migraines since quite an early age. There is also a history of autoimmune conditons in my family. After menopause (they were definitely hormone related) I no longer get the migraines only very mildly if I have too much wine!!! Thank goodness for sumatriptan whcih gets rid of any lurking migraine super quickly
I started getting migraines in my late twenties and have had them all my adult life since then. Miserable, debilitating things for sure. I had great hopes for them stopping or reducing after menopause, but sadly no luck there.
When I was diagnosed with PMR, two things in my life (other than PMR itself of course) radically changed – I started on pred and radically altered my diet from carb-heavy vegetarian to meat-eating keto.
And my migraines stopped completely! I put it down to the dietary changes initially, but am now wondering if it was the pred, as the migraines have come back occasionally, now my pred dose is into single figures. So I'm wondering if in my case the migraines were inflammation-driven from whatever cause (stress being the biggie) and the pred has masked/prevented them in some way until recently?
There isn't any (diagnosed) autoimmune history in my family but my father had migraines. Interesting…
I definitely find the possibility that migraines have an autoimmune connection quite plausible and extremely fascinating! Thanks for mentioning it. I'd love to learn more.
I've had migraines all my life.
Yes, but not in the usual way! Inherited from my mother who had dreadful ones all her life, I had my first four day one age 13..then a couple more in late teens. After that, probably about 15 classic migraines in30 years. I don’t suffer from normal headaches at all. But since I was diagnosed with fibromyalgia 15ish years ago, then polymyalgia 2 years ago, I’ve had none at all. Sorry, probably no help, & I know how awful a life full of them can be. When my mother turned 60 her classic ones changed to cluster migraines, so made me think that age may have a link, perhaps? S x
Migraines from aged 22 when pregnant with first child. Severe headaches stopped in my 50s but since then have continued with aura and dull headache. I'm now 80. Almost all are result of lights from computer & TV, bright snow plus stress. PMR for 21 months.
I developed migraines and cluster headaches (L eye) perimenopause and had between 4 and 12 a month - worst in summer in heat and light. So for 12 years. Luckily they were not particularly severe.
Since diagnosis with GCA last Feb in the first month I continued with regular migraines and then they stopped. I've had two in a year. No L eye headaches. Consultant says pred is not good at stopping migraines and there's no explanation.
There is definitely a connection but who knows what. Although at the moment I'm not getting headaches, I feel there is something migrainy still going on that gets mixed up with GCA symptoms. Everything is connected. We are at the stone age of our understainding of complex bio electrical systems.
"Consultant says pred is not good at stopping migraines and there's no explanation"
Really? Pred IS used in migraine - has been for years:
pubmed.ncbi.nlm.nih.gov/253...
This
emdocs.net/pain-profiles-st...
suggests to me that patients who are on longterm pred for another disorder (like PMR) are likely to experience a positive effect - even if it isn't a management technique they would choose for prophylaxis of migraine alone.
Started with migraines early 20's after a fall. Went away after menopause but have started coming back (now in my late 70's), very mild but more frequent.
Yes, had migraines from childhood, earliest I remember 5/6 our doctor dismissed them saying children don’t get headaches, hence I’ve never really had much faith in the medical profession.Had a small time after I had my son without them, but when they returned had them monthly for 3 days,
Diagnosed with PMR 2019 aged 60, been on preds since, at 5gm at the mo, but have to say I still get migraines but not has regular.
Have had some since age 20, but of recent years nearly always weather-related. While we're singing the praises of pred, eczema and hay fever aren't exactly autoimmune, but mine have more or less cleared up since taking pred.
Note I do not have PMR but Stills Disease a rare AI illness that for me manifests as RA. Began in May 1978 diagnosed by August that year. It’s such a long time ago I can’t recall exact drugs but steroids, enteric coated aspirin, pain relief , iron tablets and slow release Indocid. I did not have migraines at that time and stopped all medication except pain relief within 5 years.I did develop migraine in my early 30s and have them regularly now but don’t link them to bad days with RA or flare ups.
I can directly relate migraine to stress, not eating and tiredness.
Wishing you well.
PS: I meant to say that prior to menopause I used the pill, the cap and a coil, now I’m on HRT and none of these have had any effect on migraine in any way.
I can relate. Have had migraines since puberty and there definitely is a strong familial tendency-four generations. Three auto-immune diseases-hypothyroid, lichen sclerosis and then PMR diagnosed 2017 plus pulmonary emboli. Chronic migraines worsened post menopause with PMR diagnosis. The migraines were brutal when attempting to taper down on prednisone.
Presently on 6 mg pred and mtx. Hopefully research can connect the dots because it can’t just be a coincidence. Thank you for raising this question/observation. I’ve often wondered myself.
Lichen Sclerosis- I also have this, so uncomfortable and always flares when RA symptoms flare although this came much later on in life than the RA. Have you found a treatment that helps?
Saw a dermatologist. She prescribed clobatasol sp? Was hard to tolerate as it thins the skin so much on top of the pred. She also prescribed Protopic which I use as needed. Stay away from soap products.
Thank you, I also use clobatasol but am not taking pred. Wishing you well.
I can’t speak for causation / correlation with autoimmune conditions, but I have had migraines all my life. The first was when I was 17 and I was in such pain, I thought I had a brain tumour! Docs linked it to raised pressure in the eyes. Continued with severe and frequent migraines until I was 50+. My mother also had them, as do both my daughters. They appear to be caused by bright light, stress, poor sleep or irregular food intake. My mother had no a/i disease that I know of, one of my daughters is coeliac.
So as to any link with autoimmune conditions or pred, I know not…..🤷♀️
I had awful migraines In my 40s and 50’s but rearely get a headache now, but I am having almost daiky optic migraines with kaleidoscope visions obscuring my eyesight. My Drs say nothing to worry about, but it is so disconcerting and unpredictable.
Never heard of these before Nightingales, but just read up on them on the NHS website. It does indeed indicate that there’s rarely anything to be concerned about - but very unpleasant for you all the same 😳 Are they giving you any treatment at all, I wonder? I hope so. Wishing you well xx
No treatment. I just try to deep breath etc.
I, too, was a migraine sufferer. However, since having PMR & GCA from 2011 I no longer have full-blown migraines, just the flashing lights now & again! At least that is some respite from pain. My maintenance steroid dose is 5mg since 2016. Back on Alendronic Acid though after a spinal fracture last May.
Looked it up. I have something similar my daughter gave me years ago. Relief yes, but certainly not cure in the sense that the headache is still there, even if it alleviates the sensation that a spoon is scooping out the side of your head!
It's spam - 4 identical replies on 4 different forums ...
Thanks PMRpro. I thought it was odd, it was an old post and the posters name and the website suggested where the same so I ignored it
Exactly - I have reported it. Happens quite a lot.
Me too….
migraine. Caused or worsened by PMR
Migraine on tapering
Migraine or GCA?
Migraine and PMR
Eye migraines
