This post is a bit of a rant to get what happened off my chest as well as a couple of questions, so I do hope that I have posted this in the correct place!

I have recently been diagnosed with CH and since coming out of hospital have been writing a HA diary to try and see any patterns or triggers. It seems that I am getting around 10 hits a day with KIP2-3 with random bigger hits on top. It seems like sleep is a major trigger for me (I wake up from sound sleep but always ‘wake up’ normally in the morning with a KIP6) and during the day I am more at ‘peace’ with the beast.

Well that’s what I thought! Yesterday I spoke to my doctor who I have been reporting too every-other day since I have started getting cold sweats and chills. After the call I started to feel confused and irritable and within about 5 minutes I got hit with a KIP4 then a 5…6…and then I panicked as I was at work. I grabbed my bag and said I needed to go to the doctors to pick up new medication 7…8…9 as I rushed out of the building I quite honestly didn’t know what to do with myself. I started crying and screaming thumping and squeezing the side of my head as a walked up the road. My mum picked me up in the car and I was screaming and I scared her. She took me up the road to the doctors, I ran out of the car because I needed to get out, picked up my prescription getting strange looks and then over to the pharmacy. 

As soon as I walked to the desk and handed my prescription over, the assistant grabbed my hand and pulled me to the back of the shop and hugged me! I wasn’t really expecting that, I must have looked a bit of a wreck. Then the pain stopped. It lasted about 20-30 minutes like the previous bad hits.

All through this I didn’t even THINK to take my Imigran Nasal Spray. Has anyone experienced this? I need more control to recognise what to do when one hits because until I see the Neuro next (28th Sept) I won’t have Oxygen to help me but the Nasal Spray. I am currently taking amitriptyline and another drug for prevention of migraine/clusters which I take at night. I have also tried energy drinks for shadows, and that has worked a treat.

As I am new to this am I right in thinking that a middle of a cycle is worse or the ‘peak’? I am trying to work all of this out, and I am 8 weeks in now and wondering because the hits are worse than the previous weeks I am coming to the peak so I can forecast another 8 weeks at least (hope this makes sense!!)

I am also wondering what people think of sleep being a trigger; do you think it is the ‘REM’ part or sleep which is the problem?

Thank you for listening.

Take care all x

Thanks for your message and the big hugs 

I think with the energy drinks I am worried about drinking too much, I mean how much is too much? I think a couple a cans of Red Bull a day will give me a decent amount of relief from the shadows, but doctor isn't keen for me to drink too many!!

Doctor isn't well educated about Cluster headaches either, but he does know what they are at least. He is keen to help and let me give him info as well as getting info from my Neuro in the next week. I have heard of Melatonin and wondering if this is a medicine my doctor has in mind because he said there are a few medicines that he needs confirmation from my Neuro first before prescribing them.

Since posting my last message, I have spoken to my doctor who said I wasn't suppose to start the new medicine WITH amitriptyline because they both make you drowsy (my mind doesn't focus when the beast is lingering and I get really confused - more so than normal ) The thing which was good about last night was that I slept for 7 hours straight without being woken by a shadow, which has been the first straight sleep I have had for 8 weeks - so although these pills combined knocked me out I will be taking them for another couple of days to try and get some sleep back!!

(I read back the last paragraph to myself and it doesnt seem THAT great in the scheme of things, but any small amount of relief is gold to me right know lol )

x

jay wrote on Sep 2^nd, 2009 at 9:23am:


Thanks for your message Jay. It certainly means the world to know others understand this beast!

I look back to that bad hit and I can see myself pushing against my skull and it scares me because that is not me. My mum has been texting me today saying 'I hope you are pain free' because before yesterday she hadn't seen me in that state. I used to think migraines were bad (at least I can laugh at something there! )

Thanks for the info about the medication too. I am going to use this when I go to see the Neuro at the end of the month. I will also be looking at trying out Red Bull to hit those shadows (or a cheeper version anyway! ) more than I am now. I know they help because I went out for a meal after work today and had two which kicked aside a shadow and I didn't get another for a long while after.

Best wishes and thanks again

RareBird wrote on Sep 2^nd, 2009 at 7:58pm:

        You a Doctor?

   Potter

Would you care to do a little research on the names of these drugs and show those of us in the US what we might call them? Your shopping list makes little sense to me.

Names in the states:

1- Prianil: Brand Name: Eskalith; Eskalith-Cr; Lithane; Lithobid; Lithonate; Lithotabs

2- Depakine: Brand Name: Epilim.

3- Inderal: Brand Name: Inderal.

4- Isoptin: Brand Name: Calan, Isoptin.

Add the Epilim and Inderal, and it works even better.

May be you're right, but trust me it is worth showing to your doctor. I would always be GLAD to offer any info that'd reduce someone's CH pain.

Hi Emma,

Yep sleep is the BIG trigger alright.

Although I use Imitrex injections, if I were you I'd definitely whip out that imitrex inhaler and use it when an attack starts to hit! This is until you have that Dr. appointment and get your abortives - imitrex injections and O2 are good ones in my experience.

For me a cycle peaks around the middle yes, then winds down. You may be done with the worst of it soon.

With vigilant counterattacks, and a well stocked arsenal, this beast can be tamed, and for encouragement I can tell you that I had a cycle once where I didn't have to endure a single full length, full intensity attack.

My last cycle I had only one slip through (it did rage on for 4 hours though, making up for lost opportunity I guess). Even that one probably could've been prevented if I hadn't been caught off guard.

Carefully going through the info offered in side bars and stickies on this site here could be key to your also having this kind of success.

Sorry about your experience with that off the chart CH. I hate to hear about that and am wishing that your efforts to get the defenses up will work well and quickly.

JustNotRight wrote on Sep 2^nd, 2009 at 8:57pm:


Thanks for your post and hug Ginger

I'm sorry to hear of your problems with CH too. It is interesting to hear about you also experiencing chills because I was wondering if this was the medicine I was taking rather than the cluster cycle as I can have sweats and sickness with a chill sometimes. Only time will tell with that one I suppose, but I will keep in mind that you have experienced this too.

I also think I was lucky with the assistant in the pharamcy. I think these days people don't always ask if someone is okay or help them because they don't want to get involved, or are afraid to be help because they will become responsible if they do. When my partner was in town a few years ago an eldery man fell over into the road and no one stopped to help apart from my partner. I don't think I personally could not help someone in need, but then everyone views situations differently of course.

When I had that bad hit I was so out of it and in pain I had no control to take my medication. But now I have signs to look out with feeling irritable and confused so I will be more prepared.

Take care and thanks again:)