hello,
does anyone else get really bad head aches with this? i had some bad ones a few weeks ago but thought it was just stress, but ive had them all this week too. i am having a bad couple of days CFS-wise so is it related do you think? making me feel quite fuzzy and sick too :hangover:
Trees x
Yes, absolutely. At a guess I would think maybe the concentration of driving to Cornwall could have contributed to it. I get headaches when I drive, especially if it somewhere unfamiliar.
Same here.
The ones where you don't want to turn your head or while driving, the smallest bump hurts like hell.
The worst of it i find is that pain killers don't seem to get rid of it.
Trees, headache is definately part of ME :cry: Before I was diagnosed I was admitted to hospital in January with suspected meningitis my headache was so bad. All the tests were negative so they sent me home after a few days. It wasn't until April when ME was diagnosed and I started reading up on it that I realised the headache was part of the ME. In fact it never completely goes. Some days painkillers will make it manageable others I can't function. We all seem to have different \"main\" symptom and mine is headache, I also get a sore throat, which is a warning I need to rest. Cos of these symptoms I just thought I had flu. However, it never went, no matter how much I rested or how many tablets/antibiotics I took 
Then I was diagnosed with ME. Oh happy day... :wink:
James, my GP gave me some tablets that are meant for migraine for the headaches. Not got them with me so I dont know the name offhand. Will let you know later. There is also something on the ME association web site about treatment for ME headaches.
Dale xxx
Yes, Trees, as the others have rightly said, headaches are just another symptom of this jolly illness
I would call mine more of a head pain, it's not like a normal headache and nothing I take helps except, strangely enough an Alka Seltzer. It sort of clears some of the foggyness a little, but may not be of any use to others - it's an individual thing.
This is from my bible:
'Migraines are a particular problem for many people with ME, and in some people may be triggered by particular foods ...... '
It also mentions interestingly 'but could be due to fluid retention in the brain' ..... great :roll:
FANtastic :evil:
Trees, you are probably still suffering the after effects of sorting your housemate out and the train journey .. particularly as you were carrying something heavy .... the latter really wipes me out badly.
Katie it's funny you saying fluid retention on the brain. I have said to my doctor that I get awful feeling as if something was putting alot of pressure on my head. At times, a small swelling can be felt at the left hand side at the back of my head. The consultant neurologist said there was no swelling at that it would never happen or it would have been seen on the mri scan.
I was refered to the neurologist after being taken into hospital after callapsing. At first they thought I had a stroke :shock: . After many tests and scans they found nothing wrong, so said I was an anxious stresses individual. It's a good job I have a good gp who has been fighting my corner. He knew me through my nursing what kind of person I was before I became ill.
My biggest problem is headaches. they can be simular to a migraine, sometimes burning and pressure. :weird:
Gosh Lou, that really does seem to make sense in your case :shock:
I copied it from Dr Anne MacIntyre's ME Book.
The first year of my illness I felt as if my head was going to explode. I just didn't feel as if I was 'in my head' any more, something else was .... it's hard to explain.
Thankfully, that feeling has now mostly cleared but at times, I really thought I was going round the bend :wah:
I'm so sorry that you are suffering so badly, because that was by far the worst of all the symptoms for me. I do hope you get some relief very soon
Katie xxx :hug:
Due to this been an ongoing proble I am going to see a different neurologist outsie of my area for a second opinion.(november 28th) It will be hard but hopefully it will be worth it. It's thanks to my gp I have getting this far. The M.E clinic talks about how to cope with the illness and asks the gp to manage the pain side. As others have said nothing seems ro help with the pain. :cry:
Sorry trees I got sidetracked about what Katie was saying. I take Sodium valporate to help prevent them. I think it helps a little, but it's not the magic cure. :wizard:
When I was admitted to hospital with the headache, once they had ruled out meningitis they said I had migraine even though I never had any visual disturbances. The only time I have had migraine was when I was pregnant! I knew that didn't apply this time.
Even though they came up with nothing via the test results no-one thought of ME, even though I now know I had classic symptoms of it. It was my GP who diagnosed me 4 months later when I was still ill. Thank God she did cos once I had that diagnosis I knew what I was up against and what to do. I dread to think what could have happened if I had carried on pushing myself and had not found you lot!
Dale xxx
Glad to have been of help Dale :wink:
Yes, that was a bit of luck Dale :D
Remember we thought you were a bloke for ages :shock:
We nearly dressed you in a pair of speedos too :lol:
Katie, leave the speedos to James! He is sure to look better in them than me :roll: I went to school with a girl called Dale.
James, sorry for the delay. The tablets are called Naramig and are prescription only. They are a 5HT antagonist if you want technicality! :P You take them when you first feel a bad migraine type headache starting. Apparently in migraine (which is associated with ME) the blood vessels in the brain enlarge and this tablet Naramig reduces the swelling also reduces the pain. :ok: You don't necessarily have to have any visual disturbance to have migraine. Hope this helps.
Katie. can't get hold of that Anne McItyre book :thepost: at all, will just have to rely on you for quotes
Dale xxx
I know all about headaches, I suffer really bad, a lot of my headaches are down to scarring as I had a brain operation to remove an abscess, it made me have a stroke, I am very lucky to be hear but my consultant said that I will be prone to very bad migrains because of the scarring, I have headaches every day and take strong painkillers from my doctors. :cry: :cry:
hey everyone,
thanks for all the feedback on headaches. 
i've been really suffering with them this week :roll: i think it must have been the trip to the train station, then the excitement of getting here.
i also don;t know what effect driving is having on me. when im in the car i feel fine, but i have been more than usually exhausted this last few days. do you think that the combination of mental and physical exertion is wearing me out? i really hope this is not going to be a huge problem as that car is going to be the key to me having any sort of life! :run:
urgh, i hate these headaches. they usually accompany a real brain fog. for the last few days ive felt like i simply cant wake up and all my brain processes going really sluggishly.
really hacked off actually. kate coming tonight and want to make the most of cornwall while im here. i HATE this :evil: i have a few good days and then a few rubbish ones. think i am really in this boom and bust cycle and cant get out of it. just hope my referral comes through soon as i could really do with some help managing this. its the disappointment of a bad patch after a good one that is particularly heartbreaking. :cry:
Trees x
ps rather depressingly i think whisky gives me a headache my mum is a big whisky drinker and has really nice, good quality whisky, :redwine: so the first night i was down she offered me one and i though, what the hell, ive only got to get upstairs to bed.
next morning woke up with a cracking headache but didn't put 2 and 2 together. that evening i tried to have another, and id barely had a few sips before it set in again. :weird:
great. i knew my tolerance to alcohol was now zilch, but to the point where i get a blinding migraine too? is there no fairness in this world?!! :wah: :wah: :wah:
ok, tantrum over
Trees x
Trees, you know the answers to your own questions.
Driving takes a great deal of concentration and will make you tired and headachey, but it will be easier on familiar routes than it will when you have to navigate as well.
As for the whisky, almost universally people with ME have an acute alcohol intolerance so there you go. I like a teaspoon of brandy in my coffee in the winter and even that touches me a bit, as does the thimbleful of communion wine in church. :roll:
You do need to explore all this with someone who can help and advise you, someone like a physiotherapist who understands ME. As you are in London the National ME Centre would be a great place for you, but you have to pay.
Good luck with getting a referral. x
We have all experienced exactly how you are feeling Trees :evil:
You think you are getting somewhere and then WHAM the b***** strikes again :evil: :evil: :evil: :evil: :evil:
Good days will return again .......... eventually :roll:
Cats Eyes ..... I'm so sorry you suffer so badly with your head too
Group hug needed here I think :hug: :hug: :hug:
Trees I have to keep a record of my daily activities. On these sheets I also scored everything, pain level, tirdeness. It's interesing looking back over them you can quiet often see a pattern. We go through the sheets with my consultant as well as my O.T who visits every two weeks. Hopefully doing this stops the boom and bust problems.
Hi folks :D
Just reading this ...... and all the 'flashy' bits have disappeared again :?
Or its it just ME :?