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

[Lae]

Hi everyone.

For just over four months now I have had a constant headache of varying severity from an annoying hum to a full blown migraine with the average day being a sore buzz with stabbing pains mixed in. It often feels like like lots of tiny little men trying to dig their way out of my skull. It is truly constant - it is there when I wake up in the morning and still there when I go to bed at night, every single day without respite.

I've had ME for a long time now so am no stranger to headaches but this is really hard to handle. I went to see a GP after the first month and he said it was a tension headache and "not a brain tumour" (I made no such suggestion! I just wanted to know if there was anything I could do to relieve the pain besides paracetemol!) and would go away on its own. Very dismissive. I'm reluctant to go back.

Is it "normal" to have headaches like this for someone with ME? Is there ANYTHING I can do? I try and only take pain killers once every few days so I don't cause more problems by taking painkillers too often. But when it turns into a full migraine I do take migraine tablets, and also take paracetemol if I have to leave the house to take the edge off the pain.

Thankyou in advance for any thoughts you have on this
x

 

[sianrecovery]

I dont think thats normal, and I think that GP is idiot. Go back and see another one and ask to be investigated. There are so many causes of headache you need to eliminate all possibilities before you default back to the idea its somehow 'just' an artefact of ME.
and pray tell, how did he exclude 'brain tumour'? By deciding you are neurotic and sending you away?

My long headaches have often been to do with issues I have with the neck vertebrae and TMJ.

 

[Seven7]

I am in the same boat, is a really weird buzz/ crickets feeling , I also get burning in head and spine. the stabbing headache are like 2 seconds then the buzz again. It has gotten better for me since I treated OI (florinef) even though is suppose to give u head aches in my case made me better, but I still get it but it is not constant. Please let me know if you figure it out. I had MRI, checked for MS.... Everything is normal, so or it is part of my ME or my Orthostatic intolerance (OI)

 

[Nielk]

When you guys say "buzz" feeling, do you mean you hear sounds?

 

[Seattle Sue]

Make sure you are well hydrated. Dehydration can cause nasty headaches.
We need at least 2 liters of water a day. Water. Not any other fluid will do.

That being said, I think my record was 6 weeks for one headache. The doctor did a brain MRI at that point.
If your doctor won't investigate possibilities, then you need to get a new doctor.

We all get so many strange symptoms with this illness, and yet these symptoms could be signs of something else. Get it checked out!! Then if everything else is ruled out, and you're drinking enough water, then it's probably this illness.

BTW when I get dehydration headaches, I do best drinking water along with some hydration thing such as "vitamin water" or emergen-C (that you mix into your water) or something high in electrolytes. If I drink too much water at once it causes more problems without electrolytes.

I always figure, try the easiest thing first. Water doesn't have any side effects (unless you're drowning in it. LOL). Then see a doctor who will do something. They're doing less and less all the time, I swear.

 

[Ema]

Have you tried magnesium to break an intractable migraine? You can even get it in a shot or IV form.

 

[heapsreal]

chronic sinusitis, probably frontal sinuses as u get minimal runny nose type symptoms with that sinus blocked. worth looking into anyway.

cheers!!!

 

[taniaaust1]

I think you need to go to a ME/CFS specialist who is going to listen to your issues with symptoms and try to help rather then be so dismissive. I too are curious how your doctor ruled out a brain tumor without a scan. (bad doctor). Im sure more could be done for your headache.

I think you need to try to find the cause of the headache so you can try to treat it properly rather then just trying to manage it with pain killers (which will never cure anything). Like the others I was going to say, make sure its not being caused by an issue with your neck (chiropractors often help people who have constant headaches.. I had constant dizziness at one point, I had no idea it was my neck causing it.. one chiro treatment brought massive dizziness relief for me), it could be caused by dehydration or low blood volume (not good blood flow in brain).. a stronger possibility if you have dysautonomia issues with the ME, those of us who have POTS with the ME can get more headaches.... food issues/intollerences are another thing which comes to mind eg I had headaches being caused by dairy at one point.

Did your doctor take your BP? do you know how that is going? (high BP could cause headaches thou that is less likely in a person with ME). I also suggest to get your eyes checked to make sure eye strain due to a sight issue you may not be even aware you have, isnt giving you headaches.. thou in that case Id think one would wake up feeling better thou (but the headaches could be being caused by a combo of things so I suggest to look into all these things).

A constant state of being in the state of having overdone or crashing/crashed state.. could also keep a person in constant symptoms including headaches. So also consider if that is your issue.

 

[IreneF]

I've had a headache for about five years. It took me a while to figure out it's chronic sinusitis. There is at least one other thread about this subject.

People have done various things about it. I take generic Claritin. It doesn't take away the pain but most days it's bearable. At least I haven't had to take antibiotics since I started on it. A neti pot is probably a good idea if you have the energy to use it. I don't.

Good luck,

Irene

 

[Seven7]

I have been thinking about how to describe the head buzz and it is hard!!! My MRI did show so inflammation on the paranasal something!!! The feeling is like you have the flue and your head feels like a balloon. I don't hear noises per say (unless I have head zaps, another story) is more like I am more conscious of the inside noise, high pitch, crickets. What you feel when you have like a swollen head. Sorry! it is such a unique and weird feeling, is hard to describe.

 

[Nielk]

I have been thinking about how to describe the head buzz and it is hard!!! My MRI did show so inflammation on the paranasal something!!! The feeling is like you have the flue and your head feels like a balloon. I don't hear noises per say (unless I have head zaps, another story) is more like I am more conscious of the inside noise, high pitch, crickets. What you feel when you have like a swollen head. Sorry! it is such a unique and weird feeling, is hard to describe.

Have you tried treating the inflammation of the paranasal something? Sounds like it might be sinus related.

 

[Seven7]

How do u treat that? Dr just dismissed the findings. Like sudafed? I do advil and muscle relaxer and have not solve it. They calm the burning but not the swollen or buzz feeling.

 

[Lae]

Wow thanks for all the suggestions! At least I now know that its something that I should explore further, and several avenues to go down. Hope is a great thing. I think initially I will book an eye test and doctors appointment with a different GP and go from there, if nothing comes up as a result then I will explore the other options.

I'll report back if there is any success in case it helps others in the future.

In answer to some questions -

Sian - yeah, no tests just an instant diagnosis of a tension headache!

Neilk - no sounds for me If you imagine a spiky puffer fish inside your skull that keeps inflating and deflating quite rapidly, thats what the buzz is like for me. Best way I can think of to describe it. Inester7 gave a pretty good description with the balloon too!

Seattle Sue - I am very conscious of drinking enough water to stay hydrated but hadn't thought of trying the electrolytes. Thankyou, this is definately something to try, I'll ask my OH to pick some up on the way back from work.

Ema - I have not tried magnesium or heard of using it to break a migraine! I will look into this, if its effective taken as a normal supplement I'll give it a go...if not, I strongly doubt my GP surgery agreeing to it unfortunately!!

Irene and Heaps - I've been looking up sinusitus, I don't have a blocked or stuffy or runny nose but I can ask about this

Tania - BP is checked every 3-6 months and has been normal. Overdoing things is quite possible, although I have weeks of doing nothing to "recover"

Thankyou so much for taking the time to put forward some suggestions!
Can't wait to get some sort of relief from this pain..

 

[heapsreal]

lae, dont need a runnynose if its frontal sinusitis, may geta post nasal drip which is the urge to clear your throat regularly but when it gets bad and totally blocked u will get no discharge at all, thatswhen headache gets bad as the crap isnt draining out at all now.

. I suggest as treatment trial with overthe counter nasal spray with oxymetazolam(spelling) in it, should be some relief within a few minutes, or try a sudafed and see if theres improvement. For me i regularly take doxycycline which helps alot.

 

[Valentijn]

I had a constant headache until I started taking 2-3 grams of omega 3 fish oil per day. Now it stays gone unless I forget to take it for a day or so. It takes about a day to go away once I'm on the fish oil again.

 

[Lae]

heapsreal, thankyou, in that case I will try some nasal spray and sudafed. None in the house unfortunately but its another one for the shopping list...its going to be an interesting shopping basket!

Valentijn, I actually have some omega 3 capsules (vegetarian ones) so have just taken some - fingers crossed!

 

[merylg]

Hi Lae,

If I had a constant headache I would want it to be investigated by a Neurologist. Ask for a referral. I had recurrent migraine headaches due to chemical sensitivities. When I finally got referred to a Neuro, the Neuro said to me... "Once in the life of people who have headaches we like to do an MRI."

The MRI ruled out MS, brain tumours, aneurysms, stenosis, Arteriovenous Malformation (AVM), Chiari malformation...
If you think you have neck issues they can include MRI cervical/upper thoracic spine at same time.

 

[Aileen]

another thing to rule out, with a scan I think, is Chiari Malformation

 

[Snow Leopard]

I've had a headache as long as I've had CFS symptoms (as far as I can remember). I thought this was more or less normal too, but I don't have migraine style headaches.

 

[acouchy]

Headaches... my favorite subject. They have been the worst part of my illness.
Daily headaches are normal for me. I have had a headache of some sort along with lightheadedness and light/sound sensitivity pretty much every day for the past 15 years (since I first became ill with FM and ME/CFS). If I am extremely lucky I have 2 or 3 headache free days a month. I say some sort because over the years I have had pressurized ones, zapping brain jolting ones, tension type ones and migraines that can last for up to 7 days. I have not been able to figure out what the cause is. I finally talked my GP into an MRI of my head and neck earlier this year and it came back normal. A little arthritis in my neck and the discs show a little wear but I was told that was normal for my age. My brain is fine. Over the years I have tried an allergy nasal spray, migraine meds, muscle relaxants, massage therapy and chiropractic but nothing helped. Out of complete desperation during a 7 day migraine a few months ago I took a no name brand cough/cold syrup (like Nyquil). Within 1 hour of taking half the normal recommended dosage my migraine pain almost completely disappeared. Still had the lightheadedness and light/sound sensitivity and felt exhausted but it really helped with the pain. I mentioned it to my GP and he thought it was the Tylenol in it (wrong... obviously I have tried taking 500mg of Tylenol many times for headache pain and have not had any success). So I don't know which component helped me but something definitely made a huge difference. Planning on talking to my GP again and hopefully my specialist about it because I really would like to know which component as I might be able to only take one component and it may be a clue as to what is causing these headaches. I realize that it can't be too good for you so I only take half the recommended dosage and try to keep it to a minimum (under 5 half dosages per month). Wish I had more helpful information for you... Wish I knew the cause...