Is a headache lasting 4 months solid "normal" for ME?

[hurtingallthetimet]

ive had headaches and migranes for years gets worse like everything else with these illness as time goes on...its a daily thing and gets to point i cry..i dont htink it is normal at all though to go through that for so long....but ive been told it can be part of these illness...you really should tell your doctor if you havent though to make sure nothing else going on...

others have given great info and other things like sinus that could be wrong and it could be...but whatever it is you shouldnt go through that for so long without help....it helps me to lay down in dark room with fan blowing on me i take migrane medicaitions and to put ice cold towels on face and around neck...it helps if very quite also....sometimes just hearing ticking of wall clock will drive me nuts it seems like its so much louder than it is...

take care and hope you feel better

 

[nanonug]

Is it "normal" to have headaches like this for someone with ME?

In my experience, yes.

Is there ANYTHING I can do?

You could try diphenhydramine, which is a H1 antagonist that crosses the blood-brain barrier, and see if it works. If it works then there might be more stuff that can be done.

 

[Lae]

Once again, thankyou to everyone who has taken the time to post. Sounds like some of you are or have been really suffering with the head pain too, but its nice to hear that some people have found things that help them cope. I now at least have lots of things to try if the following doesn't work.

I had an eye test at the weekend and the optician said that I had some sort of eye muscle weakness (stupid brain fog, I couldn't absorb what he was telling me properly) which could be contributing to the headaches and gave me some eye exercises to do and recommended glasses for using the computer. He said to see how it goes and if the headaches don't ease off within two weeks to go back to my GP. Really hope that this is the full cause of the extra headaches!

 

[acouchy]

Lae,
I like the eye muscle weakness theory. I mean why not... our other muscles are fatigued and sore. Makes sense. More often than not I get annoying eye movements when I am trying to fall asleep. When I close my eyes they don't always want to rest and keep moving like they are still trying to see things... If you have any headache relief from the exercises let me know. Totally fascinated by this theory.

 

[L'engle]

I've also had a type of headache everyday of my illness (over a decade) but mine is intermittent: eased by rest, worsened by exertion in a very predictable way. My typical daily exertion pattern was to exert until the headache and fatigue became unbearable, rest until it went somewhat away, exert again until unbearable, repeat several thousand times... and people wondered why I didn't seem too happy, hahaha.

I only discovered recently that a fairly large amount of magnesium, both in tablet and transdermal form, makes a big difference to my type of headache. But yours sounds different. I hope you can figure it out as that sounds flat out unbearable 24/7.

 

[Boule de feu]

When in doubt I always go back to Carruthers et al (definition of ME).
http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf

Headaches are mentioned under the category PAIN (end of page 4 and beginning of page 5).
Mine also started more than a decade ago and they never went away. (24/7)
They are very severe but I have learned to live with them.
Before, headaches always had been a problem for me during PMS.
When I can't cope anymore, I take Fiorinal. It helps a bit.
I haven't tried magnesium but I do take Omega-3.

Actually, my whole head is wrong: earaches, sore throat, pain behind my eyes, pain (electric shock) in my neck/upper spine, post-nasal drip. I had numbness in my left cheek and twitches under my right eye which caused vitiligo under that eye only. My left eye is very dark.

No matter what. You must get a MRI. Headaches are too worrisome to let them go undiagnosed. It could be part of the illness or it could be something new. Never underestimate a new symptom.

 

[Boule de feu]

BTW, when I say to never underestimate a symptom, I was doing that a lot.
For the longest time, I thought my headaches were due to my eyes (bad glasses) or too much coffee (I only drink decaf now).
It's easy to find culprits. Everything seems to fit.

Stomachaches were due to nervousness. Pain in my legs was due to a lack of exercise. Pain in my spine - bad posture. IBS - coffee?
Sore throat - talking too much in class while teaching.
We try to make sense of what we are experiencing each day.
It's wrong. It's important to investigate.

 

[Lae]

Hi again and thankyou once again for your thoughts - just an update here. The headaches do seem to have subsided slightly - I still get at least one at some point every day but nowhere near the intensity of before and also not constant!!! This is a real improvement in quality of life for me. Whether or not it is the glasses that have helped I don't know, but its certainly worth a try if you are reading this with a headache and haven't had your eyes tested lately.

I agree that its important to investigate! Having a good doctor that feels the same is another story though, especially in the UK where they don't work for us - it often feels like they are working against us!! Because I was first diagnosed with "CFS" as a twelve year old 13 years ago they didn't do any tests apart from basic bloods when I started to get ill again at nineteen. It was "just CFS" again. Grrrrrr. Sorry, feeling a bit deflated and frustrated at the moment.