This is just a stab in the dark in case anyone has had similar, and perhaps share their experience ?
In my mid 40s been on Simponi for 10 years now. My AS is fairly under control however, over the last 4ish years, very slowly to begin but steadily, I've gone from having the odd headache, to bad headaches quite regularly, and now have severe migraines between 1 and 4 times a week. There seems no pattern to them. I told my Rheum specialist several years ago, but not very interested!
GP has done CT and MRI brain scans showing all OK. Eyes have been tested. My GP has prescribed some Keral, paracetemol and Stemetil for the nausea. These meds are not that brilliant at controlling them really, and I've started to become unreliable with work, which I'm finding hard to deal with on several levels.
I'm confused why I'm getting them now in my 40s (never had them any other time), and the GP also seem at a loss. Could it be the simponi causing it? Is it an additional auto-immune symptom?
If you've had anything similar it would be good to hear I'm not the only one in this situation!
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Huguen
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I was about to suggest you could be perimenopausal but then saw you were male! 😆 Although it could still be hormonal but due to changes in testosterone. I don’t take simponi but the methotrexate I take sometimes causes my migraines, I’ve been starting to get more migraines in the last year and was first given sumatriptan for them and now been subscribed propranolol daily which seems to have helped. Has your GP referred you to the migraine clinic? I joined the migraine support group on health unlocked and was told by a couple of members that sometimes there is no reason for migraines which didn’t make me feel any better!
Have they looked at potential issues with your neck, that could be triggering them. I have AS, and suffered with migraines for 41yrs, they did get worse with repeated vomiting, and being unable to function. I was prescribed sumatriptan which did help. Unfortunately I had a severe stroke at 52, and was no longer allowed them. I have straightening of my cervical spine, with a slipped disc that’s calcified. I was told this could be contributing to them worsening since I was diagnosed with AS. I was only diagnosed at 51, with fused SI joints and fused ribs. I was told in my 20s I would suffer back issues, after A&E Dr found issues with my SI joints. However at menopause, the pain suddenly went off the charts, and migraines suddenly intensified. Some biologics can cause headaches or migraines, but usually early on in treatment. Maybe ask rheumatologist for an mri of your cervical spine, it needs to be rheumatologist as you need a “stir sequence” mri which highlights inflammation.
As someone else suggested...could it be your neck? I have the same issues. I feel sorry for you, migrain headaches are so debilitating. I have to have very flat pillows. This helps somewhat.
I have suffered with Migraine since my 20's, wasn't diagnosed with RA until my 60's and have been on Cymzia for 2 years now.My migraines are caused mainly by stress assuming I avoid the obvious food triggers.
Since I have become older I no longer suffer from nausea and the pain is not so bad, I take Rizatriptan which just dissolves on the tongue.
I just wanted to give you hope, most things about getting older are not so great but migraines often seem to improve!
I see that you've had a brain scan but maybe it's your neck. I say this because that's what happened to me and I had what I thought was crippling migraines and turned out to be OA in my neck and I now have nerve block injections which really help and last quite a few months.
Hi I suffer pretty much daily headaches luckily not migraines which I only get occasionally. As I have Epilepsy I told my Epilepsy nurse who referred me to a headache nurse ( I didn’t know there was such a thing) she immediately asked me if I took regular Paracetamol. I told her yes every night before bed. I was told I had rebound headaches caused by Paracetamol & to stop taking it. Yes the headaches went away. My neurologist then said I can take them occasionally maybe once or twice a week. It may be something similar or you could ask to be referred to a headache nurse. I hope you get some answers migraines are horrendous 🙁
Not quite the same, as I have had migraines since I was about 12 but they were only 1-2 a year so quite manageable. After my second bout with Covid in Oct 22 I suddenly went to having them every few weeks so had 7 in 6 months and the affects were now lasting a week rather than just during the migraine (nausea, brain fog, sensitivity to sound and light etc) apparently it is quite common after Covid but usually when you have a history of migraines. As others have said if it is affecting you that much I would ask to be referred to a headache specialist. I’ve since started on a prophylactic routine and the difference is huge 😊
Wow, lots of replies -more than expected- thank you all for taking the time to respond. I think despite being male, my other male colleagues would be only too happy to call me perimenopausal!
These different suggestions will be very useful to bring up with the Rhuem/GP, and in a way give me some hope in that perhaps there is a detectable cause. I hadn't really considered neck problems causing it until now, so that's definitely one to look at seriously. I am preparing myself for the idea I may never know what's causing them, but at least I have some excellent trails to follow now
I wish you all as well as possible with your respective ailments. Will update with any relevant progress. 👋
note my diagnosis is Adult Onset Stills Disease which for me manifests as rheumatoid disease. Diagnosed aged 17 in 1979 now 62 and major drug free since my mid twenties . My first migraines started mid 30s and have reduced since the menopause and now the stress of work has gone. However a sudden unexplained illness in 2023 resulted in tests and I did lots of research. In brief I found that Stills may cause damage to the ear organs which may result in dizziness and migraines. Low BP seems to have contributed as well. I have been prescribed Prochlorperazine which does help. I will add that I have rheumatoid neck pain and feel this is a root cause. Wishing you good days.
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