Hi everyone, I had what I think was a migraine on Sunday. This is the second time in six weeks ... the first took out a whole 24 hours of my annual holiday!
The headache was unbelieveable, I just wanted to smash my head against a wall but ended up tugging at my hair just to relieve the pain. Couldn't keep even a sip of water down so taking any pain relief was impossible. I thought the pain of a really bad PsA flare was at the limits of my endurance but this was something else.
And my already high blood pressure went through the roof ...... had an emergency GP apppointment about that yesterday and he has tweaked my meds so hopefully that will now be ok.
Just wanted to ask if anyone else suffers from migraine and has any top tips for coping?
It's definitely worth a discussion with your doctor if the med tweak doesn't work.
I've had chronic migraines for most of my life. Due to the meds I'm on for PsA, and other health issues, I'm unable to take
any migraine meds or other meds that are shown to help migraines. I'm on vitamin B2 supplementation, as prescribed by my doctor, which has helped a bit. (As always, talk to your doctor before starting any vitamins or supplements.) Some things that work for me are cold applied to my head and back of my neck combined with being in a quiet, dark room (which doesn't often happen in my house of children! LOL). Sometimes quickly drinking a Coke helps ... I have no idea why, and I don't drink soda, but when I'm desperate, it helps - coffee does not.
Yes, I do get them, and I asked my doc if they could be related to MTX. She told me to get my MTX from a different manufacturer, and so far so good. I use oral MTX, but you use injections, don’t you? It seems I had a sensitivity to the binders in the MTX I was taking. I know how dreadful those headaches can be. Hope you get some relief quickly. Keep us posted.
Nym and Byrd Feeder, thanks for your replies. I did find a cold wet cloth over my eyes and forehead helped a bit. Having done a bit of research this afternoon I've found out that caffeine, which would be in Coke and coffee, can help migraines as it constricts blood vessels which may help to relieve some of the pain. What I think I've worked out today is that I need to ask my doc for an anti-emetic as reducing/stopping the vomiting would help me most and enable me to drink and take pain relief as well. Apparently if you can't take oral meds because of the nausea/vomiting most of the 'rescue' drugs are available as suppositories so think I'll ask about them as well.
Also discovered that migraines are a common (up to 1 in 10 patients) side effect of Humira which I had for a twelve week trial July to October ..... so maybe this or stopping it was the trigger for them starting. I think time wise the migraine is too remote to my methotrexate treatments in 2012 and expect I've been on leflunomide too long for them to be connected with that.
Have also been looking up migraine treatments and interestingly my blood pressure meds are often precribed to prevent attacks as is low dose amitriptylene which I already have for when I need help sleeping with the PsA so I think until I can get to see my own GP and my rheumy I might take this every night. There are also some levomenthol sticks/patches (4Head) I've heard about that you use on your forehead to give a cooling/tingling feeling, stocking up on some of these might be a good idea too especially as I expect they may be nice on hot sore joints as well ..... I like anything which can multi-task!
Feel a bit less frightened today by the intensity of the pain and sickness I had. I know it sounds dramatic but when I didn't think I was dying I actually wished I was so I could escape the pain. It may even have had the edge on the worst PsA flare I've ever had or perhaps as it was in my head it just felt worse.
Anyway, seems as with the PsA just a little bit of knowledge and support from other sufferers has helped me get a bit of control back. Will let you know if my docs come up with anything which might be of help to you. Thanks again.
I have had an increase in severe/migraine headaches with Humira. I often have on a day or two after my shot. My daughter has classic migraine with aura and before her prescribed medicine was available she would try and sleep. If successful the pain was gone after a 2-3 hour nap. Now its Imitrex at the start of it and it generally wont develop. As for me I take otc meds and pain meds if its severe. Hope you find relief.
Hi Jules, I commiserate, I really do, migraines can just wipe days out of your life. I’ve had migraines since I was about 12 or 13 and they got steadily worse through out my teens.
I was prescribed Amitriptyline (by my current G.P.) after many years and many meds, none of which worked, this does moderate the pain and if I start a migraine its usually later in the day. Over the years I’ve learnt the things that help me…plenty of strong coffee, plenty of water, and anti inflammatory medication. The triggers for me are; lack of sleep, long periods without food, bright lights at night, and stress. I haven’t found the MTX has made them worse but they have been much better since 2005 when I first started anti inflammatory meds for joint issues.
Thanks Louise, it's good to know I'm on the right track with the amitriptylene. I have a serious coffee habit (made the mistake of buying myself a Nespresso machine!!) so sounds like rather than worrying about how much coffee I drink I should stick with it to avoid the migraines.
Had a chat with a pharmacist today, she said that because of the PsA meds (and the high blood pressure meds I need to take) that she recommends an urgent appointment with my GP to get a prescription for an anti-emetic so that I can get anti-inflammatory meds down as soon as I think something is coming on ..... and she also said timing was important and that it would be better to take them even if it turned out to be a regular headache.
Both times they have come on in the middle of the night so, of course, I've been too tired/lazy to get up and take anything but I think this is a lesson well learnt and once I've got some appropriate meds that I'll put them in my bedside cabinet so that I only have to sit up and take with a drink of water.
Honeybunny, I think Imitrex is a triptan so I'm going to ask my doc about this as well. Thanks.
I was referred to a neurology doc who said the same to me about taking meds as soon as I started to get the first warning signs of a migraine…by the time I get the visual disturbance and nausea it too late to avoid the full migraine. My first sign is overwhelming fatigue and slightly slurred speech.
You will find your own was to cope by listening to the advice of professional and listening and taking note of your body.
Ok, had to have another emergency appointment about my high blood pressure today but as luck would have it I got to see my own GP. I told him about the migraines and he said it's possible they are side effects of the PsA meds, my blood pressure meds, the high blood pressure itself, hormones or genes (my mother was a sufferer) ....... and the list went on.
What I found really interesting was why the nausea/vomiting happens. Apparently when a migraine starts your intestines shut down so peristalsis stops and anything that is in the stomach is often vomited.
Anyway he said for me to definitely take the amitriptylene every night to try and prevent the migraine attacks but that if I do have one he's prescribed Metoclopramide to keep my stomach working and prevent the nausea/vomiting and to take a 900mg dose of soluble aspirin about 15 - 20 minutes after the Metoclopramide. Apparently neurologists have come full circle on pain relief treatments and now aspirin is back in fashion as an optimal treatment so long as it's not contra-indicated.
So my migraine emergency kit now contains: Metoclopramide, soluble aspirin, a can of Red Bull energy drink for the caffeine and 'Kool n Soothe' migraine gel sheets for my forehead/back of neck.
Hopefully, though, the little blue pills (as I call my amitriptylene) will stop them happening. Time will tell!
Sounds like a good treatment plan there I used to have aspirin in the form of Anadin extra, but my GP freaked when she found out I was taking 3 at a time as the only thing that worked…hence the neurological referral lol
Good luck with the meds, fingers crossed x
Hi Jules! I’ve suffered from chronic migraines for the past 4 years, and they started about a year before my PsA diagnosis. My Neuro isn’t sure why I get them. But I currently have an average of 23 every month!!
Evidently, botox would cut that number in half, but because of the psoriasis around my hairline, I’m not a candidate for the botox at this time.
Between many head pain and my PsA, something hurts all the time. I hope that your migraines can be better controlled than mine. Wishing you all the best!
I never had migraines until recently when taking MTX. I've stopped the MTX now as the side effects were too much and the migraines have also stopped. Maybe an adjustment with meds could help? Personally, when the migraines started that was enough for me to stop the MTX. I'm looking for a med that will give me a functioning quality of life....with MTX I didn't have that. Good luck and I hope you get it sorted out :-)
I used to have aspirin in the form of Anadin extra, but my GP freaked when she found out I was taking 3 at a time as the only thing that worked…hence the neurological referral lol