Debilitating tension headaches for about 6 months... - LUPUS UK

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Debilitating tension headaches for about 6 months. MRI results ok, now what?

eescvc profile image
11 Replies

I had an MRI last week and my rheumatologist sent a letter saying it showed "no significant abnormalities". My next rheumy app is in march. What happens now? I can't cope like this. Every day I finish work and have to go straight to sleep because the left side above my eye is in agony and makes me dizzy etc. And I sleep for 10+ hours only to have to drag myself to work with it still the next day.

I'm going to book an appointment with my GP ASAP because although it's obviously reassuring the MRI results were clear, I thought it would at least lead to some kind of help.

Anyone had anything similar? I'm close to the edge at the moment, I'm great at dealing with pain usually but at the moment I can't even enjoy my evenings at all.

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eescvc
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11 Replies
KayHimm profile image
KayHimm

That is good news that the MRI was normal. But it is not good news that you have incapacitating headaches. It may work differently in the UK, but I was referred directly to a neurologist by the rheumatologist. Your GP could refer you, right? There are medications to help and, in fact, a new medication just approved in the US and the UK that is supposed to be a life-changer for migraineurs. A neurologist may tell you your tension headaches are actually migraines. That is common. Happy to share medication experience with you. Hope you get help soon. K

Flueby profile image
Flueby

Hi. Sorry to hear this. I also get lots of migranous type headaches. I saw a neurologist and find sumatriptan helps for the worst ones. I also do some neck exercises to try and reduce tension and had some treatment from a NHS physio who specialises in headaches. Perhaps you could speak to your gp about these? Good luck and hope your quality of life improvea very soon xx

have you had your blood pressure checked. Very high Bp can cause really severe headaches.

I now have a Bp meter at home so I can check mine without having to run to the gp.

They are quite widely available now. I bought mine from one of the German supermarkets a while back, but think they are on Amazon as well.

HannahLupus profile image
HannahLupus

I get migraines when I am stressed or two long watching Tv/on computer. Ibuprofen is good for migraines if you are allowed to take them and don’t have kidney problems. Otherwise meditation and breathing sessions always help for me.

HannahLupus profile image
HannahLupus

Also speak to your doctors about looking at your medication you most likely need an increase in steroids.

sarahsch profile image
sarahsch

Hi eescvc,

I expect you have tried lots of medication. I have headaches over my right eye. If all else fails I take a single dose of naproxen & this usually clears it. Naproxen is an anti- inflammatory & so my headaches must be caused by inflammation.

Naproxen can cause stomach & kidney problems especially with long-term use, although a proton pump inhibitor could be used to lessen digestive upset.

Your GP may consider sanctioning a short course to help depending on your other manifestations until your next Rhemy appointment.

Sarah x

TwitchyM profile image
TwitchyM

I have exactly the same trouble, crippling headaches, dizzy, unbalanced, eye pain... sounds familiar! My MRI was clear, and my rheumy said that because it was clear they can do nothing about it. I find that taking things slowly, drinking plenty and keeping dosed up on painkillers helps a bit. x

Polly2Cats profile image
Polly2Cats

I have sjogrens and have always suffered with migraines. I started with tiredness and debilitating headaches like yours. I feel for you it’s awful.

I believe mine were caused by me doing too much I was unaware I had a health condition. Now I have treatment for sjogrens and have massively reduced what I do I don’t get them unless I push myself too hard. I’ve got better pain relief too now.

I know that’s not a welcome message - try slowing down a bit if you can - I totally ignored ppl at first.

I find drinking loads over night helps - I take a pint of milk to bed

Please do go and see your gp too though.

Best of luck x

nanleighh profile image
nanleighh

Hi eescvc, It must be a relief to you that your MRI was negative. But like you said if nothing is wrong why are you having all these headaches? I had headaches 3 to 4 times a week, pretty debilitating ones, like migraines I had pounding on one side of my head or the other and was very sensitive to light and noise. I thought it was something I just would have to deal with. Tylenol is the only thing I can take because I’m allergic to aspirin and all NSAIDS. Then a miracle happened for me. I hurt my back and I had nerve pain going down my left leg. My primary doctor put me on gabapentin for the nerve pain. It didn’t really do anything for the nerve pain, but suddenly I realized that all my headaches are gone. I have not had a headache now for three months since I started it. It has been quite miraculous. You might talk to your doctor about trying gabapentin for your headaches. It’s all trial and error with these medications, but it’s worth a try. I hope you get relief in some way. Take care, XO Nan

jopo280886 profile image
jopo280886

Hi Eescvc,

I have much the same symptoms as you do ☹️ I have Lupus, Sjogrens and RA I’ve just had a MRI no results as yet! My Rheumy thinks given the symptoms (piercing pain on one side effecting vision with nausea) it might be Artiritis ( narrowing of a blood vessel carrying blood to the brain) Ask your GP to rule this out. Hopefully you’ll get some relief soon. Take good care 😘

Treetop33 profile image
Treetop33

Me too - not as bad as yours by the sound of it but pretty much ongoing ever since I had mild concussion. I've been slightly helped by computer filters and orange light, not sitting in fluorescent light if I can possible help it. I'm looking into chiro because it's sometimes the neck and back (and having an MRI, though they rarely show anything)). I found pred helps so it may be inflammation related, so anything that brings inflammation down. Diet maybe - are you allergic to anything?

If nothing obvious is found my next port of call is vision, and whether filters on glasses would help.

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