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#1 Tue, 20/05/2014 - 15:12
I have been a cluster sufferer for a few years now but for the last few weeks my headaches have been really weird. I could get 2/3 in a couple of days and then they will go away for a week then I will get a bad one then nothing again for a week really don't know what's going on any ideas
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One of our members once said cluster headache is the nearest thing you will get to a designer disease - no two people have the exact same experience in their attacks and no two attacks or cycles are the same. CH just does what it wants to when it wants to which makes life extremely difficult for all sufferers. if they have changed markedly from the usual, we would suggest that you get a referral back to your neuro, any changes in symptoms and attack patterns should be investigated. Some of the problem may be - and I stress may be due to the seasonal nature of CH and the weather has been very changeable recently; I know these last few days we have had thunderstorms in Wales and very close and stuffy weather and my head has been all over the place. Woke up with a real horror this morning, the first for a week or so and I'm shadowing mightily (for those new to CH, 'shadowing' is a term we use to describe a dull background headache or feeling of pressure which does not go to a full blown CH attack).
Others will no doubt chime in here.
Never really thought about the weather had a bad one last night and major thunderstorms today so maybe!! I did speak to my Neuro and he said it may be my meds fighting with the CH as I take 200 mg of glutamate daily to try and control them
As colin said, glutmate? Did your neuro prescribe that?
Yvonne as Val explained and far better than I could (Well said Val) CH is a strange condition. The gory bits, before I was diagnosed I got absolutely battered for 2 weeks, I was afraid to go to sleep. That's when I finaly went to my GP, I'd suffered for 5 years. I was very very lucky my GP immediately recognised the symptoms, long story short he told me I should also google "cluster headaches" that's when I found OUCH.
The GP gave me a prescription for Imigran injections 2 weeks after my previous visit. I was actually wanting another attack so I could find out if the injection worked, yup you guessed it the beast would not strike. Around 4 weeks later he paid me a visit, I waited for 5 to 10 mins (when the pain set in) then whacked that injection into my thigh. Viola 10 mins later I was pain free, I'd finally after 5 years beated that horrible beast ;).
I've now suffered for 15 years and gone from episodic to chronic back to episodic and back to chronic. It's crazy. I've read some triggers can be heat, doesn't seem to affect me, I do think that for me sleep is a trigger. My attacks are mostly between 10pm and 8am so I tend to sleep during the day, that said rarely I do get a visit during daylight hours. Other times I get attacked at anytime of the day or night, my record lol is 10 in a 24 hour period.
i know from reading this forum that everyone is different, some get the attack around the same time daily, I do not but wish I did that way I could plan my day .
Glad you found this excellent forum and the knowlage provided by the regular posters, sorry you had to tho.
I wish you long pain free periods but ask as many questions as you please, the fine members here can and will answer them.
This was meant to say topiramate guess my kindle had other ideas lol now I sound like a complete fruit loop
Sorry Val as I said it was meant to read topiramate,so no my Neuro is that much of a weirdo thank God he's really nice . Any suggestions on holidays have finally decided to go after cancelling twice due to the beast but my doctor has given me enough injections of sumatripton and a letter for the flight so I am living in hope not bin too bad the last couple of days just shadowing all day and have found that if I take a sumatripton tablet before sleep I usually get through the night . God it's so nice to talk to people about this who don't look at you and think oh you get migraine!!!!
If you are going on holiday, depending on where it is you might be able to arrange oxygen (if you are already prescribed it that is) to be delivered to your holiday destination - even in Europe. I've even managed to arrange it in Australia.
Also, I don't know what your actual travel arrangements are, but to get you through the journey you could ask your GP for frovtriptan tablets [brand name Migard], they have a half life in the body of up to 26 hours and they keep me PF during flights to the Antipodes. We thought we had discovered a really good preventive, but the more you use the frovatriptan the shorter the painfree period gets, but used occasionally they are brilliant.
Just a thought.
Hi val thanks for that have managed to get a prescription for those this morning I am in the canaries and currently having 3 attacks a day with no 02 so it's a bit of a mare!! Hopefully when I pick these up tomorrow I may get lucky and get a few days pain free I fly home Friday night so it would be great if I could maybe enjoy a couple of days without the beast!! Do you think this is advisable sorry for asking all the questions but feeling a bit lost at the min
thanks in advance
Yvonne, the frova' will work within 40 minutes of taking it