HELP!
Posted , 9 users are following.
Hi guys,
I have been having an awful time. I am on methotrexate injections 15mg weekly and 200mg hydroxychloroquine daily.
About 2 months ago my migraines started up again (havent had them for years) and I was having one a week, which has recently increased to every 2-3 days. I am on propranolol 120mg a day (seemingly to no affect).
The migraines are terrible. I lose my vision, my speech and my memory alongside the banging head and are completely debilitating. The after affects are nothing like i used to have. I don't regain my vision or speech properly for days and at the moment i dont even get enough time to recover from one before i am hit by the next one.
The gp wont take me seriously, just upped the propranolol.
The rheumatologist will not see me before my appt in Feb and even that is an appt with the nurse!
I am in my final year of a mental health nursing degree and am a single parent to a 4 year old, so i am about to drop out of uni after 3 long hard years because i cannot cope anymore so thats all been a waste of time now.
Has anyone else been through anything similar? I have no idea what is causing the migraines exceot maybe a build up of toxic medication in me?!
As of yesterday i have decided to stop both DMARD's as if no one will listen to me or monitor me then i see no other choice.
I'm not even sure what advice i an after, just i know that i cannot cope anymore, and you guys are the only people that might know somewhat to what i am going through.
Thank you for taking the time to read x
0 likes, 8 replies
frances85589 sarah84999
Posted
To stop taking your meds could make you worse. Hydroxychlorine is noted to be bad for headaches n can effect your vision. I am on that too.
To be able to have gone through uni and be single parent is amazing. can you not get help there so you don't have to drop out. It the would be such a shame.
You should have specialist nurses that you can ring for advice that could help you
sarah84999 frances85589
Posted
Hi Frances thank you for your reply. My migraines restarted a week before i had even started the hydroxychloroquine so can't have been that initially.
The problem with uni is i am now missing too many placement hours and the workload is insane and i struggle to look at a computer screen for long at the moment too, combined with as soon as i've been at work all day or battling a migraine and put the little one in bed i go to bed too! Other than tonight that i'm just too scared to go to sleep! (I wake up with my migraines).
I phoned rheum nurse yest but she said she cannot do anything to my meds. Phoned consultant's secretary and requested an earlier appt with him and initially she refused then i broke down on the phone and she said she would try fit me in to a clinic and leave it with her. But nothing and i've tried chasing her today too to no avail.
Wish I wasn't just left alone with it all...
frances85589 sarah84999
Posted
I think they need to investigate further instead of throwing more drugs at you. Thing is all these drugs cause problems.You don't always get them to start with but can bring out things later. Believe me I know.I missed meds due to wrong info before planned colonoscopy and ended up with mass headache n collapsed.Days later in hospital couldn't walk properly n still can't 2 months later
lyn1951 sarah84999
Posted
Withdraw one medication at a time to see if that helps, and then wait about a month before trying something else.
I too have been having problems with medication side effects, turned out to be the MTX was causing me to have night sweats, waking up drenching wet.
Have already been through change of life so wasn't that, but did occur to me that something was going on with hormones, starting to consider asking GP for HRT.
Since I have stopped MTX my sweats have become less, also ran it past my rheumo and she pointed out it can take a month to get medication out of your system, after ten years on MTX a little scared that my arthritis was going to flare big time, but so far so good.
I also had terrible problems with leflunomide with head aches and generally feeling terrible, my blood pressure was off the scale high, withdrawn immediatly, really scary if I had left it, told I would have had a stroke, is your blood pressure normal.
jbjb93 sarah84999
Posted
I had horrible migraines several years ago. Ended up going to a neurologist, which was the best thing! He put me on tramadol as a preventive and then gave me sumatriptan for when one came one. I was on the meds for three years and have tapered off. Now I rarely get one and it it's the too bad.
See if there is a neurologist near you that works in migraines.
Hope you feel better!
lisa82473 sarah84999
Posted
Hi, I started to have migraines when I started the injection form of MTX as apposed to when I took the pill form. Plus I got a really bad rash on my face that I can't seem to get rid of. I stopped the injections and went back to pills. No more migraines. I think it is awful that your Rheumetologist won't do anything til your appt. so sorry this is happening to you.
sukes sarah84999
Posted
Hello Sarah,
you are having a really rough time by the sounds of it and it will be such a shame if you have to drop out of uni after all your hard work.
I took hydroxychloroquine for just over 6 weeks and decided to stop taking it because I felt so ill. I have always suffered with migraines, but they were ten times worse whilst taking hydroxychloroquine. My sister took MTX and within a few hours was being violently sick.
If the Rheumy department can't see you, could they at least suggest something over the phone, my Rheumatologist liaised with me via email and said to stop the meds immediately.
Jayjay1959 sarah84999
Posted
Hi Sarah
I too suffer from migraines after taking the MTX injection,
Not always or every week, sometimes my digestive system
suffers and it lasts on average for 3 days after my injection.
I have adjusted my working week to accommodate this as I take mine Thursday night when going to bed so the worst of the
symptoms happen over night and Friday then they taper off.
Over the weekend.
I now work M-Th but I understand that is not an option for you 😲And children don't
Understand what you're going through.
Dont drop out after all your hard work, MTX stays in your system for a while after you stop taking it can you take it alternate weeks or ask your GP for steroids injection or oral so you can stop the MTX until Feb
Sorry Sarah but I do feel your pain and suffer from MTX hangover as I call them but over 14 years it doesn't happen all the time for me, I think it depends how I am feeling generally if I'm not 100% when I take it then it knocks me flat. If like you say you're doing
your degree as well as a single parent. Then that could be that
your a little under par and the MTX is punishing your health.
If you haven't got the direct number ring the hospital and speak
to the specialist nurses you could ask to be put on the
consultants list in Feb not the nurses list