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Topic: Initiation Week (aka Hell Week) (Read 476 times) |
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mathieulives
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Initiation Week (aka Hell Week)
« on: Oct 27th, 2006, 11:01am » |
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10/09 2am - kip 10 without a clue of what they hell was going on!! I wanted to tear my head off my head, cut open my skull, and pound the rightside of my brain with my fist until it went away. I had to settle with pounding the outside of my head against the wall and the floor. Finally I fell asleep around 5am, & had to get up for work about an hour later. I was exhausted but so glad the headache was gone. Until..
10/10 3am - kip 10, this time I had a little better clue of what was happening. I was crying to God early to spare me from having to go through this hell again. I tried a scalding hot shower-because I thought it was a sinus infection. Of course, this did not really help. Again it broke right before I had to get ready for work. That night, I went to sleep sitting upright on my couch thinking it might be the way I slept, or is just the way my sinus' are sitting. Yup, not so much because...
10/11 2am - kip 10, samethings as above, stopped just in time for work. I told some friends and family about headaches, thought it was sinuses, so I made a dr appt for sinus Rx's for 10/13 at noon. I went to bed taking sinus meds again. By this time I was exhausted. I'd had about 9 hours sleep in 3 days and afraid to go back to sleep again.
10/12 2am - nothing. 3am - nothing. 6am - nothing. Got showered and dressed - nothing. Walked outside - nothing. Drove to work - felt shadows (didn't know what shadows were then). Got to my desk, kip 10 within 5 min of sitting at my desk!! My eye was bloodshot and tearing wickedly, and I was grabbing my head and trying to pound it on my desk without making noise. Went to dr immidiately. Felt like hours before they could see me, they gave Relpax and after 30 min The Beast was down to about 50%. I was dizzy, confused and exhausted.
I have had exrays, MRI, blood tests. Dr put me on Relpax, then Imitrex and topomax. I went to the Neuro a couple days ago, where he and his 2 newest med students each independantly diagnosed me with CH - so there is hope for the CH attention with our future dr's! However prior to this moment, throughout my twenties, I was being misdiagnosed for other things, mainly sinus headaches.
Today is the 17th day, and I've ave. 2-3 per day. I've got Imitrex, I'm at 240mg Verapamil(instead of Topomax) a day, 2 different anitbiotics, O2 - wrong mask, ginger ale, grape juice, and H2O. I'm either starving or don't want to eat. When I'm not having an episode I have the worst mood swings and want to be alone, yet I don't necessarily want to feel alone. Sometimes I get really hyper. The other day was the worst & most depressing. I felt helpless, exhausted, frustrated, alone, I was too tired to be pissed off and did not see the point of having had to live this way forever. Sitting in a bed I just started whaling! No one around me understood what I was going through, it was such an empty feeling.
Then the testimonials on this site caught me when I felt I hit bottom. I could not believe it, finally someone could relate!! In between episodes, I read all I could and almost everything I read was exactly what I was going through. Pacing, rocking, banging the head, scalding showers, and even some of the home remedies I'd come up with for myself were already being used by many of you!! I sent some info to family, who is now trying to learn more.
Makes me emotional to know you all are out there too, some of who probably live in my city. I thank everyone who contributes to this site, and I hope I can offer a hand to this maddness for future, existing, and unknown clusterheads, heaven forbid there be any more.
RM
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George_J
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Re: Initiation Week (aka Hell Week)
« Reply #1 on: Oct 27th, 2006, 11:16am » |
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Welcome, RM.
Good to hear that you finally got a diagnosis. Sounds like you're on the right track med-wise, and that you have some knowledgeable docs helping you out.
Lots of Texans here, so you're in good company. I'm sure they'll be along soon to connect with you.
It also sounds as if you're getting mostly nighttime hits. You might check with your doctors to see if they would agree to your trying melatonin--for some of us, it really helps to reduce the number of night attacks. You should look at trying 9 to 12 mg, taken 30 minutes before bedtime. I know how the night horrors can wear you down.
Again, welcome--and best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Kevin_M
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Re: Initiation Week (aka Hell Week)
« Reply #2 on: Oct 27th, 2006, 11:22am » |
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on Oct 27th, 2006, 11:01am, mathieulives wrote:| I've ave. 2-3 per day. I've got Imitrex, I'm at 240mg Verapamil(instead of Topomax) a day, 2 different anitbiotics, O2 - wrong mask, ginger ale, grape juice, and H2O. |
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Hi ML,
This pain certainly makes one dependent on knowledge about it to get some helpful results. Keep in touch with your doctor about how much the verapamil is helping, there can be room to fluctuate the dose if he feels it appropriate, I'm on a higher dosage and it has helped cut the hits down more.
Just wanted to mention, when I've taken heavy antibiotics for before, during and after any procedure, it seems the verapamil was much more less effective for some reason at that time but don't know if that is common or not. Don't drink grapefruit juice with verapamil.
Glad you found us, stick around, this site IS for cluster headaches sufferers and their supporters also. Welcome.
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| « Last Edit: Oct 27th, 2006, 11:23am by Kevin_M » |
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LeLimey
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Re: Initiation Week (aka Hell Week)
« Reply #3 on: Oct 27th, 2006, 11:40am » |
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Hi Mathieu,
Verapamil usually needs to be at a higher dose before its effective. Having said that, as with most meds we take you do have to stagger your increase. You also need regular ECG's while upping the dose as verapamil is normally used as a Blood Pressure med. Alot of people have had success at around 480mg with some managing on less and some needing to go all the way to about 960mg per day. Don't give up on it yet!
Another common strategy is to ramp up on the verap while using a prednisone taper. This has the effect of blocking hits while you wait for the verap to kick in. It shouldn't really carry on for more than about 3 weeks and the usual starting dose is 80-100mg per day with a week at that and then tapering down by 5mg every 3 days. Definitely worth speaking to your doctor about but please remember it is a steroid and you should look into it.
I'm another one who has an increase in CH activity when I'm on antbiotics. Not only do I get more hits but they are harder to shift. Its a bit of a bugger, you need them for one condition and they go and exacerbate another.. sucks don't it?! 
We can all remember how we felt when we were new. Its overwhelming so please don't be afraid to ask and re-ask questions, we don't mind, we want you pain free whatever it takes okay?
Looking forward to hearing more from you
Helen
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mathieulives
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Re: Initiation Week- 1 more question plse :)
« Reply #4 on: Oct 27th, 2006, 7:55pm » |
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Helen, Kevin, George:
Thank you for your ideas and encouragement. My mind is spinning with all these new terms, but I'm getting it all one at a time, and red bull worked to block my morning hit, so i'm soo glad I found this site. I'm having some 02 issues out of my control but like I said I have imitrex.
My new questions is, I am getting lymph-node type bumps on the back of my head by my neck. I had a large one on the right and small one on the left, but now it seems the one on the left has swollen significantly and the right is almost not there. I thought I read something about swelling during episodes... anyone know what this is?
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alchemy
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Re: Initiation Week (aka Hell Week)
« Reply #5 on: Oct 27th, 2006, 8:07pm » |
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Hello and welcome. are you getting hit on the left side? some people here have stated they get a bump on their neck during a hit. glad you found this site. stick around there's always a light on
jim
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LeLimey
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Re: Initiation Week (aka Hell Week)
« Reply #6 on: Oct 27th, 2006, 8:25pm » |
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Hi Again Mathieu,
There are a couple of threads relating to lumps on the ch specific board, take a look and see if they help you, BB (Annette) has posted some really interesting stuff about it. If you can't find your answers there we'll help you but its not uncommon to get strange lumps and bumps!
Glad the red bull worked for you, I find it very effective too but the trick is to chug it at first sign of needing it. You leave it too long and, as will all our "meds" it just won't work 
We'll get there, together!
Helen
Helen xxx
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BB
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Re: Initiation Week (aka Hell Week)
« Reply #7 on: Oct 27th, 2006, 10:16pm » |
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Hi RM
Here comes the "lumpy doctor " 
As far as I have found out these lumps are ganglion lumps caused by swollen nerve bundles. They are nerves of the parasympathetic chain which causes the droopy eyelid and tearing eye and blocked/runny nose. They tend to get hot and swollen and tender during a hit and may stay swollen during the whole cycle. Applying ice directly to these lumps seem to help with the pain a fair bit so its worth trying.
Just wondering why you are on antibiotics? Do you actually have an infection or not? If not its best to stop the antibiotics as they do seem to make CH worse.
Take care and painfree wishes to you.
Keep asking questions and we will try to give you an accurate answer.
Annette
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mathieulives
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Re: Initiation Week (aka Hell Week)
« Reply #8 on: Oct 27th, 2006, 11:24pm » |
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on Oct 27th, 2006, 10:16pm, BB wrote:
Just wondering why you are on antibiotics? Do you actually have an infection or not? If not its best to stop the antibiotics as they do seem to make CH worse.
Annette |
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Thanks Jim, Helen, and Annette, I'm on antibiotics for an infection I had in my head and i'm pretty much finished with the Rx, but you are right I experienced a sharp increase in frequency and intensity when I started them
The lumps have been there the whole time. The right was always much bigger than the left. Since the right has gone down to about normal, but today the left got swollen significantly! Made me concerned
Jim: I'm a righty, even though i'll shadow sometimes on the left or in the back. 
Thanks for making me feel welcome, I hope to be able to help others soon.
Also, does this mean I won't be able to have another beer again? If you drink, how do you drink?
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George_J
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Re: Initiation Week (aka Hell Week)
« Reply #9 on: Oct 28th, 2006, 1:04am » |
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on Oct 27th, 2006, 11:24pm, mathieulives wrote:
Also, does this mean I won't be able to have another beer again? If you drink, how do you drink?
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No, it doesn't. Alcohol only seems to affect episodic clusterheads during a cycle. Outside a cycle, we're pretty much like anyone else--able to enjoy a drink or two without incident. In cycle, however, it is a trigger for the majority of episodic CH'rs. So it's best avoided, unless your experience shows that it has no effect on you. After all--why buy trouble? I abstain totally during my usual 6 to 8 week cluster cycle. It's an inevitable trigger for me.
Alcohol seems to affect many chronic sufferers differently for reasons unknown. Most report that it has no effect whatsoever.
Hope this helps--there have been many threads on this question in the past. If you look around in the archives, I'm sure you'll find some of them.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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nohandgunsallowed
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Re: Initiation Week (aka Hell Week)
« Reply #10 on: Oct 28th, 2006, 3:13pm » |
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Dude! or should I say dude rancher!? maybe just howdy...
i am so with you and your bout i can't even tell you. email or pm me Any Time for support &c.
had two weeks and a day of 10/10, 2 am hits like f*ing clockwork (which ended a week ago, details on that to follow.) had been diagnosed with 'migraines' 10 years back and had cafergot, rizatriptan, oxycodone for breakthru pain. these usually worked, until this cycle. i Chewed the meds (quicker onset! yuck! but i didnt care) and they'd work in about 20 minutes For about twenty minutes. then the HA came crashing back through... the Meds had Stopped Working! now what? what the H am i supposed to do? ...like yourself, I started to despair -- could i Live like this? Every F*ing Night? ...
There was No Way i was going to go to the ER for hi flow O2 or morphine or Anything during those three to four hours. can you imagine? trying to maintain and fill out forms, etc? of course not. so i finally went in one night at 9 pm knowing i had a number of hours before the Crash hit... and ER looks at me like...drug seeker?...freak? "what do you mean you are GOING to have a HeadAche? on a 1/10 scale, where is your pain now?" kind of thing ...
through the days during this cycle i had (what i came to know are called 'shadows') 2 or 3 or 4/10 remnants from the night before. one day i was pain free for three hours and almost wept from the relief...anyway, i had Hit The Wall. something needed to be done. during that info-seeking marathon i found this board and also found...
Acupuncture!!!
{I've searched this site without any luck for others who have used this treatment btw }
i should say that i Honestly don't know What i have: is it migraines? CH? CHMigraines? my new neuro says CH; opinions from members of this board vary, but frankly, i don't care what the dx is: i just want the pain to stop!
AND THAT IS WHAT ACUPUNCTURE DID! STOP THE PAIN!
yes, i know i'm shouting...
i was 'under the needles' at the acupuncturist's office an hour after i called. this was during the day, not 11/10 nighttime hit. my 3/10 shadows, honestly, weren't stopped, maybe reduced to 2/10 or something. BUT:
that night, eight hours or so after acupuncture, my (what was by now, Normal! predictible and killing me) 10/10 2am screamer was only 5/10 !!! But the best news has to do with the next night's 2 am:
NO HEADACHE! period! imagine my relief...breathe, pray, and pray some more...
so. the Acupuncture was the thing that worked best and quickest (and kinda cheaply) for ME during that run, that has only stopped for the last week or so...
i was at the Dr's office two days later and the Neurologist's a day after that. started prednisone, 60mg for 10 days and now tapering; verapamil 240mg; super-hydrating; trying not to chain-smoke; blahblahblah
Mathieu. I feel your Pain. And a lot of other people on this board do too. there's some comfort in not being just stark-staring alone & suffering, I think. so hang in.
anytime you need a shoulder dude, just bzzzzz me.
pf wishes on you, johnniejohnnie@gmail.com
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nohandgunsallowed
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Re: Initiation Week (aka Hell Week)
« Reply #11 on: Oct 28th, 2006, 3:17pm » |
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about that beer...me, i can drink okay if no headache is looming, unknown and unfelt, in my neurology somewhere. but one beer is a quick way to find out if it IS! and if it is, uh oh.
on the other hand, a drink ( or a bunch of drinks ) doesn't bring on CH for me by itself.
my advice: drink two fisted. beer in one hand, Imitrex injectible in the other - just in case.
peace
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LeLimey
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Re: Initiation Week (aka Hell Week)
« Reply #12 on: Oct 28th, 2006, 3:19pm » |
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No hand guns allowed.. I'm not sure I'm reading you right.. are you saying you commenced pred 2 days AFTER your first acupuncture treatment?
I just want to be sure I understand!
Helen
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nohandgunsallowed
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Re: Initiation Week (aka Hell Week)
« Reply #13 on: Oct 28th, 2006, 4:25pm » |
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yup. after.
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LeLimey
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Re: Initiation Week (aka Hell Week)
« Reply #14 on: Oct 28th, 2006, 4:32pm » |
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okay that makes things clearer.
I'm glad you are pain free and I'm glad the acupuncture provided some relief. I recently attended a migraine action conference here in the UK where a doctor from Germany lectured on how acupuncture was at best a placebo effect. There were very in depth trials into it in Germany as they were looking at state funding for it however it was proved that the placebo needles (ie not in right places and not to right depths etc) were as effective as the correctly administered acupuncture.
I can only think this is because the pain mechanism is different to normal pain and the way in which our pain is triggered.
Pred will start working from day one if at a sufficient dose and acts as a very good interim treatment while waiting for verap to ramp up. I'm glad your doctor has given you both. What dosage are you up to on the verap so far? Are you having regular ECG's?
Helen
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nohandgunsallowed
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Re: Initiation Week (aka Hell Week)
« Reply #15 on: Oct 28th, 2006, 5:08pm » |
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of course, what's needed is a double-blind randomized controlled trial on large patient groups...but even then, whatever Works! for the sufferer.
i can't speak to the placebo effect of the treatment, my objectivity was suspect at best.
Q. re. verap though...i'm on 240mg sustained release in two 120mg doses daily. have heard on this board that sustained release is not ideal...comments? also, that higher doses of verap may be needed. how can i tell if the dose is correct if i'm not in a 'cluster?'
for the moment though, am trying to undo the two weeks of CH-caused wreckage. i'm a new grad LPN going for my RN this year. i missed 3 clinical days due to the bout which will cause me to repeat an entire semester! rrrrrrrgh! cruel fate, ye goDs!
no ECGs...my heart is strong and regular. why?
pf wishes
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| « Last Edit: Oct 28th, 2006, 5:11pm by nohandgunsallowed » |
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LeLimey
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Re: Initiation Week (aka Hell Week)
« Reply #16 on: Oct 28th, 2006, 5:18pm » |
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Sustained release doesn't seem to work so well for alot of us although it does work for some. I don't actually know why but I'm sure someone else will be able to tell us both!
Did you know you should avoid both grapefruit and grapefruit juice while on verap? This is because it intensifies the effect although other citrus fruits are fine.
Unless you are getting hit don't increase the dose. Or rather, to use better English, don't increase the dose unless hits are still breaking through consistently.
Are you chronic or episodic? If episodic you should only take it while in cycle. Once you have had two weeks without a hit start tapering off it. If the hits recommence then up the dose again and repeat! If not.. oh joy your cycle is over!
You need ECG's as verapamil IS a blood pressure medicine and as such regular checks should be taken while tapering up. Once stabilised on whatever dose you don't need any more unless there is a problem (obviously!)
I hope this helps a bit, your cycle is sounding promising.. lets hope it'll soon be over for you!
Helen
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nohandgunsallowed
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Re: Initiation Week (aka Hell Week)
« Reply #17 on: Oct 28th, 2006, 5:32pm » |
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appreciate the convo, Le L...
with all due respect are you sure about the verapamil related to episodic sufferers? my info is that it takes a couple weeks for the verap to build up a level in one's system and is used as a preventative...if i waited until a cycle hit the verap wouldn't work, as there'd be no 'level' already in my blood...
just wondering. ta
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LeLimey
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Re: Initiation Week (aka Hell Week)
« Reply #18 on: Oct 28th, 2006, 5:49pm » |
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Thats why you have a pred taper!
Seriously.. why would you want to take verap year round if you didn't need to?
How long do your cycles usually last? Lets see if we can't come up with some potentially better idea's for you
Helen
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nohandgunsallowed
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Re: Initiation Week (aka Hell Week)
« Reply #19 on: Oct 28th, 2006, 6:16pm » |
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um, i'd do just about anything to prevent a single CH episode, not to mention a cycle...of course, i've no idea what the side effects of a Ca+ channel blocker might be...but i can deal with constipation if that's the worst of it...
don't wanna restate my entire history here (i've covered it in another post or two, i'm certain) but suffice to say that i took propranolol 80mg daily for 10 years as a prophylaxis. lame side efx, but what can you do? (parenthetically, i Know propr is Not a CH med -- i think i have some weird hybrid -- migraine CH crossover or some such. If you Are curious, plz just search my posts, there aren't that many and it would answer some ?s.)
long/short : either the propr worked for ten years -- with a cluster or two a Year (believe me, i know i'm blessed) breaking through for 3-4 days only. OR my clusters were Uncontrolled by the propr and i had the above-mentioned break throughs -- who can say?
again, thanks for your interest and time. SINcerely
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BB
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Re: Initiation Week (aka Hell Week)
« Reply #20 on: Oct 28th, 2006, 7:34pm » |
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Hi No Hand ... I mean ... No Gun ,
I am a doc and I have a degree in acupuncture and I practice it regularly and I can tell you that acupuncture does not work for cluster headaches. It can work well for the muscular component of migraine but not cluster headaches. The pain mechanism is very different.
Some cluster people have muscular spasm or tension in the neck and shoulders due to tension during the hit, that can be helped by acupuncture. But to stop a CH pain or prevent one from comming it cant, as far as I know.
However, I would like to hear of your acupunture story. How many treatments did you have , how far apart and which acuppuncture points did the practitioner use and for how long. Are you still using it and how is it going , is it still effective as initially?
Thanks heaps and painfree wishes to you.
Annette
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RichardN
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Re: Initiation Week (aka Hell Week)
« Reply #21 on: Oct 29th, 2006, 12:52am » |
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Hi and Welcome
Quit alchohol (and I was fairly heavy drinker) when found this site . . . and yes, MAJOR trigger for me . . . a real beer or small shot of brandy will trigger an attack within 15-20 min . . . sometimes quicker. Most of the bars I frequent carry Busch NA (non-alchoholic), so if I'm in the mood . . . a "near beer" is not a bad alternative . . . . but mostly, I drink lots and lots of water which helps (me) keep frequency and intensity of attacks down.
Regarding accupuncture. 03' was a bad year for me . . .meningitis, followed by bladder cancer diagnosis, followed by TURBT and two more similar procedures with BCG treatments inbetween . . . while recovering from the last procedure (which determined the bladder/prostate would have to be removed), I had eight weeks recovery time before the BIG surgery. During that time I saw a very well known, third generation accupunturist, herbalist (huge apothecary), martial artist and former professor of philosophy in Chattanooga . . . . he was 65 at the time. I saw him three times a week, and though I always had my backback w/B tank and regulator in the room with me, never had an episode during treatment (20-30 needles ea. . . . .have a neat collection . . . several different lengths) and attacks seemed to be greatly reduced.
The problem with accupuncturists/herbalists is that on each occasion, the locations of the needles might change (with exception of some which were always used in the same place . . . I think for the calming effect . . . easy to doze off) and the herbs might change with every visit . . . . several zip-lock bags with labels in chinese (so not something you can check with your local pharmac
ist . . . tho' he was always willing to tell you what they were and what they were for . . . but his method was to treat your body as a continually changing mechanism which required constantly changing therapy/herbs. I can tell you that I felt MUCH stronger mentally/physically for the experience which helped me greatly for the major surgery that followed.
With any profession, you always have to realize that not everybody graduated in the top third of their class . . . some just squeek by . . . but my experience was very positive and I don't begrudge him any of the $$ I spent.
Be Safe, PFDANs
Richard
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mathieulives
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Re: Initiation Week (aka Hell Week)
« Reply #22 on: Oct 29th, 2006, 1:20am » |
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on Oct 28th, 2006, 7:34pm, BB wrote:
Hi No Hand ... I mean ... No Gun ,
I am a doc and I have a degree in acupuncture and I practice it regularly and I can tell you that acupuncture does not work for cluster headaches. It can work well for the muscular component of migraine but not cluster headaches. The pain mechanism is very different.
Some cluster people have muscular spasm or tension in the neck and shoulders due to tension during the hit, that can be helped by acupuncture. But to stop a CH pain or prevent one from comming it cant, as far as I know.
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I have much tension in neck today, my neck is stiff, I can still turn it but I have pain- so i'm glad to hear that is prob b/c of it all. I aborted 3 in last 24 hours - I feel very fortunate! Doc, I read triggers can be stress, glare, dairy products, nuts, sexual activity, relaxation.. and I am the rare case that is sometimes sensitive to light and sound.. do you know of anything else that may trigger?
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BB
CH.com Alumnus
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I love YaBB 1G - SP1!
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Re: Initiation Week (aka Hell Week)
« Reply #23 on: Oct 29th, 2006, 8:33am » |
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There are a lot of triggers and they are different for different people. Apart from alcohol which is the most common trigger, people have reported many things from grass, smokes, perfumes, yeast, sleeping lying flat, heat, infection, etc to clicking jaws, chewing too hard, anaesthetic for surgery and dental work ....
Only you can work out which are your specific triggers and avoid them .
Good luck with it all and painfree wishes .
Annette
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mathieulives
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Re: Initiation Week (aka Hell Week)
« Reply #24 on: Nov 1st, 2006, 1:05am » |
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Thank you all for your support and information. It has been a wild ride to say the least. I have been shadowing only for the last 24-48 hours and today I acutally felt a similar thing on the left side as I did on the right. But no serious episodes! Still taking the meds, and it seems the body has finally adjusted to them. I just have headaches all day, but I'll take that over the attacks anyday! Thanks again
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