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.

Raymond, have you tried Oxygen in the past? You mentioned the ER treated it with 02 and it finally went away.

Oxygen is the 1st line of defense when the ha occurs. Read all about it on the left. It must be used with a high flow regulator of at least 10-15lpn. More is even better. It also works better with a non-rebreather mask. If you have not tried this before, please run back to the doctor and get a prescription. Mine used to abort in 10 minutes, every time.

Good luck tonight.

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 Raymond.
    I too was pain free for six years.  Mine gradually came back over the last few weeks.  You are not alone.  Always remember, IT EVENTUALLY GOES AWAY.
    It sounds like we are goiing through a similar cycle and meds.  My fun began with nightly headaches  (k3-K4) starting about 9/9.  These increased 1-2 per about an hour or so after falling asleep.  The pain and duration was also increasing.
    Had the grandaddy  (K10) for about an hour on 9/26.  This was also brought on by sleep.The weekend pretty much sucked.
    Saw the doctor on 9/29.  Prescribed a PREDNISONE burst along with VERAPAMIL.  60mg Prednisone per day, tapering off after 4 or 5 days.  360mg Verapamil daily.
    I have no episodes past the K5 level since starting this regimen.  However,  I am not able to sleep.  I can usually only get 1 hour before waking up with the beginnings of an attack which seems to disipate after 10-15 minutes.  I remember this happening before until I tapered off of the Prednisone.
    There are alot of people on this site that know exactly what you are going through.  I know I take some comfort knowing I am not alone.
                           Good Luck To You
                             Just Plain Carl

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

friend please try and get o2 as discussed and imitrex injectable and maybe throw an energy drink in chugged at first sign. hang on friend we can all relate.

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

Thanks EVERYONE for your support.  I'm still trying to figure out how to use this site correctly.  I finally realized I have to look back at the board for replies - derrr.

While Sat & Sun were good, Monday was not.  I FINALLY got a script for oxygen and have that now in the house (thank you GOD) and verapamil which I started last night (1).  Around 11:30 I felt 'odd' and I never slept until after 4AM this morning.  I battled with major muscle spasms and soreness in neck and shoulder beyond anything I've ever had before.  But not CH attack.  Verapamil?  Supplements? I don't know.  I was exhausted.  I wrestled with it all night long and used oxygen 3-4 x to  prevent what felt like the beast spreading to my head.... it halted it in its tracks EACH time and I felt a calm wash over me.  I have another Dr. appt. today and will get O2 refilled.   This is the worst 'phase' I've ever had I just don't know what to keep trying / doing it keeps changing on me it seems.   I think I am trying too many things and am not sure WHAT is helping.  I may get off of Prednisone now that I am on verapamil - I don't think Pred is helping anymore.  Has anyone had SEVERE muscle spasm and soreness?  I spent the entire night massaging my shoulder and neck, in the shower, rubbing icy hot etc... all over it.  Getting some valerian root today and will also visit my Chiropractor who is a personal friend and certified wellness guy.  Trying to remain calm.  I'm reading as much as I can handle on here and cannot thank everyone enough for the support and kind words - You are all special people, and I know that now more than ever.  I don't know where I'd be without this site and feedback.  It's validating, comforting and supportive all at the same time.  Sorry to babble on like this, it's been a rough go this trip and I'm morphing into what seems to be a blubbering child.  PEACE and BE WELL to all.

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 [smiley=me&mb.gif]

How wonderful it feels to have had a great nights sleep w/o the demon lurking about.  Odd as it may sound having that O2 tank by my bedside - it feels like a strong night watchman looking out for me!  Today I feel SO much better and am hoping to have another PF evening.  This recent occurrance has been so very different than the last time (six years ago).  Thank you once more to everyone for their kind words, support and knowledge!!!  This site is the absolute best.  If anyone 'new' to it reads this, be sure and read through this site and listen to everyone here.  I'm fortunate to be working with a great Osteopathic Dr. who is familiar with CH and understands my pain.  I also begun working with my Chiropractor and it made a world of difference to me.  My neck and shoulder muscles were spasming and quite sore after my attacks.  Do I dare say I see some light at the end of this tunnel?  Peace and much love to all of you caring souls here.    

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

How wonderful it feels to have had a great nights sleep w/o the demon lurking about.

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!  :)

Well I'm VERY HAPPY to report that I've been PF now for almost a week.  I think the beast has moved out.  Tapering off the Prednisone and while my Verapamil has just ramped up to three tabs a day, I'm questioning whether or not I should stay on it for the three weeks that the Dr. prescribed?  I HATE MEDS!!  However, I'm running scared and thinking should I stay on this?  I'm new to Verapamil and well, don't know what to do.  I have the O2 by my bedside in case of another attack - but I really do think the beast is gone - and hopefully FOR F'n GOOD!!!!!!!!!  ;-)     Thank you to all for your letters of encouragement.  When you are in the middle of this - it's so very hard to see any light at the end of the tunnel and it's so easy to lose hope and feel like it will NEVER end.  I really cannot thank you enough for the support.  This recent occurrence really scared me and was so very different from the last attack 6 years ago.  Of course, our minds have a way of erasing painful memories and pain, but I really do think that it was much more intense this time and more erratic.  My heart goes out to anyone currently suffering at this time.

To all the new CH sufferers.  You have found the BEST place on the inet.  Hang in there, it does pass and it WILL get better.  You are NOT alone.  EVERYONE here understands EXACTLY what you are going through and can help.  Take advantage of this site and read as much as you can - without getting overwhelmed.  Don't be afraid to start a post, it's great therapy and you will find many friends here who care.

     “The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.”   Buddha quotes (Hindu Prince Gautama Siddharta, the founder of Buddhism, 563-483 B.C.)

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

Good for you Raymond.  Sounds like you have beat the beast.
Don't forget to taper off the Verapamil when you think its time.

I hope to be following you soon.

                               Best of Luck
                                  JPC

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

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.

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