I was PF for six years.  I thought it was gone for good.  On a recent trip it came back with a vengeance.  Prednisone worked before but is not doing the trick now.  I tried Jim's herbal remedy and will stick with it but I don't know if it will work.  It didn't last night.  Ended up in ER this AM and the pain was hell.

Here is my CH journal from this latest episode.  I'm really scared.  I don't think I'm as strong as others on here and can handle this pain.  My sister called me today and I broke down and sobbed - and it scared her.  I don't know what to do.

Thursday, October 3, 2008

I awoke early AM 4ish with another cluster.  This one lasted about 15-20 mins and then faded quickly.  Again at 5:30 same thing but a bit more severe.  I took prednisone early.  I had JUST begun cutting down on the prednisone and wondered if this was why it kicked in for the first time since being on it?

Called Dr. and he upped my prescription of Prednisone back to six pills / day and tapering off over the next 3 weeks.  I slept GREAT on Thursday night and felt great on Friday.  I also started an herbal regime of Kudzu, Skull Cap, Melatonin, St. John’s Wort and magnesium supplements.  This was recommended by someone from clusterheadaches.com.

I saw the Dr. on Friday afternoon and he suggested staying with prednisone since I was feeling better and seeing how that goes.

I awoke at around 1:30AM  Saturday morning with a very bad cluster attack – even after taking all the herbal supplements and prednisone for that day.  It lasted about 30 mins and ranged from a 5-8.  It was pretty bad.

I fell back to sleep and awoke again at 4:20 with another one VERY BAD PAIN around my eye socket, left side and around my ear, top of head SHOULDERS AND NECK.  My muscles are all extremely HARD and very sore.  I think I had some major muscle spasms going on as well.  Pain was 5-6 and it lasted about 20 mins.

At 5:20AM I awoke again to another really bad one that lasted about an hour 5-6

At 7:50 I awoke again to yet another one and this one was hellish.  I think it was equal to or might have been worse than the one I had at the canyon.  It was a 10 and lasted for a long time.  I felt it coming on very strong and fast and begged Tim to take me to the ER for oxygen to make it stop.  I was so exhausted from this night of attacks and in so much pain.

Tim brought me to the ER and they treated me with Oxygen.  It took a while it seemed to finally get help and then I started feeling some relief.  They also gave me an IV with Toradal (sp?) for the pain.  I sort of felt that take over and ease the pain – but I could STILL feel the battle raging inside my head.  The pain eventually died away and I was released around 10:00am I believe.  They wrote me a prescription for the toradal and we had it filled.

I went home and fell asleep until almost 5:00 – without interruptions.

It’s now 8:00 on Saturday night and I’m really afraid about sleeping tonight.  I’m trying to relax and not get worked up about it but the pain this morning was so very bad – I don’t know how I can keep going through this.  I am currently on some GABA and other herbal supplements to relax and stay calm – as if not to wake the beast within.  Yet, I feel it.  I was fine when I awoke and there was no shadowing or feeling that it was there and now I feel it slowly ever present in my neck and shoulder – almost as if my body is waiting for me to lay down again so it can jump out again.

I need to do whatever it takes for this.



So here I am at 10:00EST and terrified to go to bed again.  I feel it lurking.  I now have some pain medication to take along with my kudzu, melatonin, skull cap, magnesium, gaba, st john's wort.   I feel so lost and alone here.

That's a shitty feeling just sitting there waiting for the beast to strike. I used to HATE that feeling more then the attacks themselves.

Jimi's right, you need to get oxygen prescribed for your home. Using a high flow regulator, at least 15 litres per minute, with a Non Re Breather Mask, started at the first hint of an attack. I can abort an attack in less then 6 minutes that way. That's why it's critical you have it at home, starting it immediately is one of the most important parts.

Prednisone is an okay short term med, for me it'll block 100% of the attacks at doses as low as 30 mg  a day. The problem is it's a very harsh med and it beats your body up bad in the long run. Most use it as a transitional treatment while they wait for their preventative meds to kick in. The preventative medication is what you take to reduce the frequency and the intensity of your attacks. I use lithium at 1200 mg a day, other common prevents are verapamil and topomax. Many more for you to read about and discuss with your doc.

Since you're getting creamed right now, talk to your doc about imitrex injectables. It's a stat pen, looks like a ball point pen you push on your leg and push the button, not like a syringe if you's afraid of needles like I am! It'll knock the beast back to hell for me in just a few minutes.

You have much reading to do. DO NOT rely on your doc to know a lot about CH. It's up to you to educate yourself and assist your doctor in formulating  a treatment plan. Most doc's just don't see enough CH to have a solid grasp on all of the options. We will help you every step of the way, you're not alone anymore, welcome home brudder.

Guiseppi

Hang in there, I'm in the middle of a bad one myself, I'm tring to just relax as much as possible and not dwell on it (not easy.) You should ask Dr. about O2, maybe if you can, try one of the tripten meds like Imitrex or Zomig... Either way stay strong, I hope you get a break.

TJ

Hang in there Raymond. Careful stacking up treatments. If something works you wont know what did what.
Got 02?
all the best
thebb

CH wont kill ya, but it can be a bitch not having a whole lot of information.
Check these out.
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Keep on truckin
thebb

RaymondA wrote on Oct 8^th, 2008 at 3:44pm:


Great to hear it, Raymond!  Hope you'll remain PF!
Be sure & post often to let us know how it's going.

Best regards,
Jim

P.S. ...and you're right about the people here! 

Hi Raymond!

Be careful about going off meds too soon.   We don't want the beast making a come back!   Maybe you could go off of the Verapamil but stay on the Kudzu combo.  Then slowly go off of that.  Just a thought!

Keep up the PF days!

Jeannie

RaymondA wrote on Oct 4^th, 2008 at 10:07pm:


St Johns wort can be a trigger as with other antidepressants. Melatonin can be both a treament and a trigger. The only way is to try it. Most people need 9 to 15 mg for it to work.

Paul