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Thank you & Advice on Pain Management ??

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From: Kareela
1 total posts
Currently suffering :(
Hi there.

Firstly, thank you to everyone who contributes to this amazing site. The information contained within this site is by far the best culmination of real events and data that I have come across and without the effort, dedication and commitment from everyone involved with this site, we would not have a place to go to feel heard or understood.

I have been suffering for 8 years now, usually averaging 2 cylcles per year (10-12 week cycles) and I often jump onto this site to review new posts, treatments and I guess in a way, as bad as it sounds, to know that I am not alone when suffering from these horrendous attacks.

The reason I have elected to write a post this time is that my current cycle (which started in November last year) is killing me and I am trying to find ways to deal with the pain. I am getting 4 severe clusters every night, and the last couple of weeks they have been that bad that I have actually been sick from the sheer pain. For the last 3-4 weeks my clusters have been occuring at 11.30pm, 1.30am, 5.00am and 7.00am. I try everything from hot showers, heatbags, ice packs, excessive amounts of water, magnesium & calcium tablets, disprin (3x), oxygen, pain away and the list goes on ... if you turned me upside down Im sure i would rattle !!!

Im averaging about 3 hours sleep a night which is not good when I have a full time job as a BDM and expected to be on the road at 8.30am each workday. My bosses dont understand what im dealing with which makes it incredibly hard to continue achieving expectations when I am so exhausted and just want to sleep. Ive even referred them to this website but i really dont think they understand just how horrific and debilitating these headaches can be.

As far as medication goes I take isoptin 80mg twice in the morning and twice at night. Ive been doing this for 8 years and lately dont even think i should bother as it doesnt seem to block anything ... I was prescibed imigran for my last cycle and it worked by reducing the cluster attacks down to about 15-20 minutes, but this cycle the imigran 20mg nasal spray, which I take at the onset of the cluster, is taking 30 minutes for the cluster to subside (better than 45-90 minutes) but still a hell of a lot of pain to go through before the imigran kicks in. On a scale of 1-10 the last couple of weeks would be consistently averaging an 8-9 with the occasional 10 which nearly makes me pass out.

I have been to my GP recently and have a referral to a neurologist in Sydney so will be arranging an appointment soon.

Im sitting on the lounge waiting for the next attack to start. I think i have about 15 minutes so im just waiting for the next night of hell. So tired and just want to sleep but i know thats not going to happen, the shadows have been fairly intense today so im expecting a repeat performance.

Ive read up on the majority of posts relating to lack of GP knowledge, Neurologists that dont know what to prescribe, types of treatment; ie, lithium, steroids, etc. The frustration is that its all so hit and miss and the side effects for long term use with a lot of the drugs out there are concerning, so not really eager to shove something else into the equation. Apart from imigran, nothing else seems to work.

Anyway, just wanted to say thank you again and if anyone has any suggestions regarding pain management I would be grateful.


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85 total posts
Not currently suffering :D
My neurologist put me on gabapentin (Neurontin) which i have found quite effective in reducing both the frequency and intensity of the arttacks. I get a few mild episodes (maybe 2 or 3/10 at worst) at times but since I started on the gabapentin about 9 months ago the worst I have had was an attack which i would rate as 5/10, so relatively mild in the CH scheme of things. So far I have had no side effects. Whether this medication would work for you though is unpredictable but certainly worth a try.
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From: Joyner
10 total posts
Currently suffering :(
Hi Webbie, sorry that you have been in so much pain. I had been on indomethacin during my last few cycles but have now started on verapimil and am finding it much better, far fewer nocturnal attacks.
Do you have the high flow oxygen at home? For many of us it really does help but it has to be at least 15ltr per min. I actually don't find the Imigran spray effective but the injections work brilliantly, but they have to be a last resort as they are so expensive.
I hope you find something that works for you soon.
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From: Huonville
10 total posts
Not currently suffering :D
Hi Webbie,
Sorry to hear you are in-Cycle at the moment, your cycle seems to mirror mine very well.
2 cycles of around 12 weeks per year is what I get normally 4 attacks at 6 hour intervals & shadows in between.

Not to throw another solution at you, but I've just started on topiramate, titrating 25mg to 200mg per day over an 8 week period to try and prevent reduce the CH cycle time to remission. (I've had to slow down to increasing my dose to an additional 25mg per fortnight now as I wasn't handling the dosage increase very well)
It has a horrendous list of side effects but if it breaks the cycle or reduces the cycle as some reports have cited to just a week or so then I'll be over the moon.
O2 and a list of other things haven't helped me & the only thing I can suggest is to slowly try one possible solution at a time.
topiramate (TOPAMAX) seems to have a relatively high hit rate on the poll on this site
I wish I'd seen it earlier.

Best of luck Webbie & I hope your cycle ended right after you hit the Submit button.


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Kevin keys

From: success
6 total posts
Not currently suffering :D
Hey webbie

Sorry to hear your having a tough time girl.
Mine have started up again as well. however ...........

Last year was my worst year by far , probably 16 weeks straight of high 8 to 9s with a few 10s chucked in, 7 or 8 times a night living on no sleep at all ,it was a real ball tearer
however they where all short lived thanks to O2 but just left totally exhausted as I know you know,! , I don't think I would have made it through without high flow O2 though, and getting in quick is the key , as soon as you feel that shadow , get on the gas I say ..
Any who .so. Finally last year I seen another doc and he put me on topiramate 50 mg and my CH virtually went away the next day , now weather it had come to the end of my cycle or not I really don't know and I stayed on the tabs for another few weeks until I was sure I was in the clear but they never returned..... Well. until about 2 weeks ago.

I have now picked up my oxy again and started back on the tablets 1 a day and touch wood I have had my fair share of 3 4 and 5s but no big blow outs or that terrible track feeling the next day and even several days of no CHs at all sometimes , of course they are so unpredictable and I wouldn't dare leave the house without my O2 or try a trigger food or drink but I just though I would share that I found topimarate so far to be a god send and personally I don't think I am experiencing any side effects , but of course every one is different.

I wish you the best of luck girl. Stay strong and take care.
Any question feel free to Msg me or whatever. X
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