Sorry if this isn't too coherent, I've just come out of todays second attack.

The thing I hate the most is that each attach brings flooding back the 10 years I spent (5 x 3 month clusters in total) without any treatment. It's like some kind of post-trraumatic stress disorder - these are things I dont want to remember, but the pain suffering and despair - it's like it all happened yesterday...

I feel exhausted, but I can't sleep - what to do? :-[

[quote author=4B6E78636B6455426B6D7F6F0A0 link=1227826404/0#0 date=1227826404]Sorry if this isn't too coherent, I've just come out of todays second attack.

The thing I hate the most is that each attach brings flooding back the 10 years I spent (5 x 3 month clusters in total) without any treatment. It's like some kind of post-trraumatic stress disorder - these are things I dont want to remember, but the pain suffering and despair - it's like it all happened yesterday...

I feel exhausted, but I can't sleep - what to do? :-[/quote]

        wake yer hubby up.

          Potter

Thanks Viet' - problem is:

a) I'm not married
b) I'm a bloke

:-?

I guess I've had right around sixty cycles (6 weeks each) since I started with this stuff.  Twice a year for twenty years, once a year for ten, and every three years for the last ten.  They don't get any easier.

As far as sleeping goes, has anyone mentioned melatonin to you yet?  We normally need to take more than the recommended amount--I find that 9 mg about an hour before bedtime helps me to sleep, and seems to cut the number of nighttime hits that I get during a cycle.  Some folks take it in conjunction with a benedryl tablet.

I've not noticed any particular side-effects.  It's not habit-forming, and (with me at least) does not seem to cause drowsiness the next day.

You may wish to consider trying it.  Perhaps it will work as well for you as it has for me.  Give it some time to work--it may take a week or so to show an effect.

Anything that helps us to sleep during a cycle is a good thing.

   Shit I knew that.  Get a girl friend or hire one so you can wake em up.

                     Potter

hey Ade, have you heard of frovatriptan??

it is another triptan so has to be treated the same as imi (i e no more than 2 in a 24 hour period), and if you have an imi, you're limited to 1 frova and vice versa

the difference is, it can be used semi preventatively as it has a longer half life than imi.

My hubby uses them when he is getting hit really hard (he's chronic), what he usually does (which works for him) is take it for 3 days, 1 in the morning and 1 at night, and it stops his attacks for the time he is taking them!!!

it's not a good idea to use them every day as your body can build a resistence to them, but they can help to give you a break and let you catch up on sleep!!!

could be worth thinking about  :-/

all the best Sandra x

I must admit I have ignored the 'max 2 injections daily' on several occasions (inc. Mon and Tues of this week)

I mean, if I'm getting 4 attacks a day (as it was Mon and Tues) what's a fella to do? There's just no flippin' way I'm gonna go through another attack without any relief, it would be the end of me.

As it is, my local surgery has in the past, been a bit begrudging with the Imigram. They will not give me a repeat 'scrip ('cos of the cost to them) so I have to take time out from work at leat once a week to get a new scrip. During my last cluster I even recieved a letter from the surgery compalining that I was blowing a hole in their budget. It was hand-to-mouth for quite a while. All that changed when I turned up to the surgery (walked 1/2 a mile to get there) in the middle of a full-blown attack.

No real point here, just letting off some steam... :-/

it's really not a good idea to take more than the reccommended dose Ade???

think about trying the frova, could just be the break you are looking for!!!

Oh and your surgery cannot withhold giving you a prescription for imi due to cost!!!  It is the reccomended treatment for CH and it is also in the BNF. Should you have any more problems like that you should contact your Prescriptions Advisor and complain, that your GP is with holding treatment for your condition!!

Would you not try O2 again, used properly it can work wonders for you guys!!!

Sandra xx

Gonna try again to get some zzz's

I've just got to keep in mind each day of attacks brings me 1 day closer to PF days.

Thanks for listening.

Night all.

O2, O2, O2, can I say it again, O2.

High flow regulator with at least a 25 LPM output and a non-rebreather mask!!!!

PFW, ROLO, who is stuffed like a ????

And lovin it.... :)

Also please take a look at Imitrex Tip, in the menu to the left of your screen. It details a trick you can use to stretch out the trex. I can't do it because I can't look at the needle. If you can handle that you can get 2-3 shoots outta one shot. Hang in there, keep thinking about the light at the end of the tunnel. They hurt like hell but they will end.

Keeping you in our thoughts.

Guiseppi