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Topic: Like a bad penny......., (Read 424 times) |
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wip5150
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I have tired head
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Like a bad penny.......,
« on: Jul 8th, 2005, 10:30pm » |
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Hello again my fellow sufferer's of Clusterville! Needless to say I'm back.
So you've opened this thread and gone this far, perhaps you're willing to read a little more. But, before you invest the time, I should tell you I'm sort of a crappy, lazy member here - only slinking around when an attack hits so I won't blame anyone for not investing the time 
Well, I started battling these delightful (please note sarcasm) gems when I was 19. Like many of you, I had no clue what they were. I think I was finally diagnosed with CH when I was 25 and perscribed Trex nasal 20mg which worked pretty well along with my own "homemade" treatments like scorching hot showers, breathing almost to the point of hyperventilation and some other stuff that worked about half the time. Over the years my cycles became pretty standardized:
* Occur about every 16-18 months
* Usually triggered by a cold or the flu
* Last about 6-8 weeks (but declining as I have been getting older and balder - no correlation I'm afraid)
* Peak for about 10 days
Now I'm 35 and it's been 18 months since my last attack. (Wow - I feel like I'm at confessional!!) Here's my concern - this time, my cycle is completely whacked out. It started about 8 weeks ago with the normal crap - waking up about midnight, dealing with the headache (not usually too bad in the beginning to use anything so I just sorta sit and deal), then going back to bed as I know I'll be peaking in a week or so. This time, however, the peak wasn't as long or as painful as in the past. I figured that I might be getting lucky and might be having an "easy" cycle (a relative term to be sure).
So, I go on vacation to South Carolina and the humidity starts giving me the knowing shadows. I have a few headaches, but nothing too terribly severe so, again, I just shrug it off to the humidity.
(now we get all nice and personal  )
So, last week I had a vasectomy (obviously not related to CH's  ) and, unfortunately caught a cold the next day. A word of advice to any boys reading this - DO NOT GET A COLD UNTIL AFTER YOUR VASECTOMY HEALS!! COUGHING AND SNEEZING ARE NOT ADVISED....but I digress. So, almost immediately after catching the cold my CH's go BONKERS. I'm talking Kip 8-10 three to four times a DAY. Well, all I've got in my arsenal is some breathing and a perscription for nasal trex and I start using the latter - a lot. And, by a lot I mean double my daily "allotment". But, when the pain is that intense and that frequent, I really don't care.
Exacerbating the situation is my job, which requires me to travel. I'm sure you can imagine the anxiety and frustration I experience when I get a Kip 9 on my flight back from Philadelphia. I got quite a few reactions from people from  to  to  and finally  .
So, I decided two things after this week of hell:
1. I need to see a Neurologist and I made an appointment for a few weeks out with a headache specialist in Chicago who has a lot of history treating CH's
2. I need better drugs so I went to my doctor today and he perscribed Verapamil which I've wanted to try. I even had to educate him on the dosages using the "Update on therapies for Cluster Headache" paper.
I know many of you will suggest oxygen and I would like to try it but, with all the travel I do, it's not really practical for me. CVS is out of Verapamil until Monday (no other pharmacy has it either) so I'll just dance with the one who brung me (trex) until then.
So, at this point you must be saying to yourselves "nice story, reasonbly well written, even witty at times....but what's the point?" Good question faithful reader and here is the answer: I'm scared to DEATH that I may becoming chronic. Has anyone else experienced this - turning from an episodic sufferer to a chronic? I'm hoping someone will tell me "You're an idiot - suck it up Sparky". But, maybe I am becoming a chronic sufferer and, if that's the case, I'd rather start preparing for it.
Thanks for reading and repsonding.
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| « Last Edit: Jul 8th, 2005, 10:41pm by wip5150 » |
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Ever dance with the devil in the pale moonlight? I have, and man it hurts
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Topical
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Re: Like a bad penny.......,
« Reply #1 on: Jul 9th, 2005, 12:52am » |
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Geez, coughing with a vasectomy. Stop right there and let me give you a sympathetic youch!
G/L on the treatment. Verap. takes awhile as it ramps up. You can get O2 at home and have it waiting for you at hotels. Airplanes are difficult to get it but it is possible. I'd pull the emergency switch and suck it down off of the overheads. Maybe you can try O2 it out at home, if it seems to work then the hassle arranging for it travelling is nothing.
Your hypothalamus must be freaking out with the cross country travelling. That might be one of the problems.
1. Good, hope he helps out.
2. Expect some minor constipation or possibly dizziness until the right dose is found. Check out the Kudzu thread on the treatment board if you can't stand the verap. It may be another possibility for you.
I hope you don't turn chronic that is my worst fear. I will watch this thread to see how people went from episodic to chronic.
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E-Double
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Re: Like a bad penny.......,
« Reply #2 on: Jul 9th, 2005, 6:12am » |
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Welcome back (unforunately),
#1 According to the International Headache Society,
chronic is defined by 1yr without 30 consecutive days PAIN FREE on or off meds (that was just added)
http://216.25.100.131/ihscommon/guidelines/pdfs/full_form_watermarked.pd f
so you have a long way to go.
#2 Don't worry about becoming chronic or even having the beast......try to live and be as positive as you can!!!!! You know all the tricks, so use them.
I always had clear cut relatively short cycles. they came 2x a yr and were only @ night. March 04 my cycle began and never let up..... Became chronic BUT I will tell you this:
For me knowing that the chances are relatively high that I will be getting flogged at some point in the day has actually brought the levels of anxiety down. No more dread. No more questions of when they will leave only to return. I stopped asking those questions quite sometime ago and started living again.
I'm tired and burned out like many yet I push along and live a happy life!
Hang in there dude and stick around!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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paul_pero
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Re: Like a bad penny.......,
« Reply #3 on: Jul 9th, 2005, 8:13am » |
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Gday 5150
Sorry to see you here
I think you have a long way to go before your chronic, but its no good when any HA hits you. Not to mention in public!! And with a sore ahem!!
Try and do what Topical said about O2. At least have it for home. You say heavy breathing works sometimes, so I think that breathing the old pure O2 would probably help you. It has worked wonders for me. I just came off it around 20mins ago. ( I was stupid and had a beer tonight with dinner, I thought because I went 2 days without a HA I was free. Around 30mins after the beer a really bad one hit. Straight on O2. It took longer than usual 20mins to kill it, but its gone). Get a bottle for home and use the drugs while away from home.
I won't say welcome back to the site, but I guess I just did.
Hope you're PF soon dude
PAul
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don
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Re: Like a bad penny.......,
« Reply #4 on: Jul 9th, 2005, 10:11am » |
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Quote:I need to see a Neurologist and I made an appointment for a few weeks out with a headache specialist in Chicago who has a lot of history treating CH's
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Tell me it is not Diamond?
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wip5150
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Re: Like a bad penny.......,
« Reply #5 on: Jul 9th, 2005, 1:43pm » |
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on Jul 9th, 2005, 10:11am, don wrote:
Tell me it is not Diamond? |
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No, it's Robbins.....familiar with him?
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wip5150
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I have tired head
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Re: Like a bad penny.......,
« Reply #6 on: Jul 9th, 2005, 1:45pm » |
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Thanks all for the thoughts and responses. I generally am very good during a cycle and quick to say "F*** you" to the beast and live my life. This one, as I said, very different but I suppose time will tell.
Thanks again for the concern, support, and, most of all, understanding.
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Ever dance with the devil in the pale moonlight? I have, and man it hurts
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unsolved1
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Re: Like a bad penny.......,
« Reply #7 on: Jul 9th, 2005, 2:49pm » |
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Only about 10% of sufferers go on to become chronic.
BTW ... Dr. Robbins is on the web @
Robbins Headache Clinic
Unsolved
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gore2424
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Camero's "RULE"
  
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Re: Like a bad penny.......,
« Reply #8 on: Jul 9th, 2005, 3:38pm » |
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first welcome back and sorry
as you can tell by my low posts I dont write too much but just wanted to tell you it took 17 years of just spring/fall clusters before coming chronic in Nov of 1999
but i am well medicacated as of now and I got lucky got SS Disability 8 months after the job I worked at for over 20 years decided to lay me off (in Jan. 2003) due to staff reduction (yeah right) And this whole place here from message board to chat has keept me going the people here are like family I wouldnt be here if it wasnt for all here trust me ok I have rambled on too much again so pfdan's to all Terry
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what the hamsalad was that ¿?¿
I said your hair looks nice Ü
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cazman
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if ya dont like it take a walk
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Re: Like a bad penny.......,
« Reply #9 on: Jul 9th, 2005, 4:00pm » |
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sorry to hear your suffering nad i hope you feel better.
with that some say helping other helps your self thats what this site is about so , while you take think about giving back ya hear me
ERIC T!
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marlinsfan
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Re: Like a bad penny.......,
« Reply #10 on: Jul 9th, 2005, 7:22pm » |
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on Jul 8th, 2005, 10:30pm, wip5150 wrote:I know many of you will suggest oxygen and I would like to try it but, with all the travel I do, it's not really practical for me.
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Dude, I travel a lot for work too. Been on O2 only about 5 weeks since I found this site, and it is a godsend. I live in FLA and I am in Phoenix this week. I called my O2 supplier in FLA (thanks to Lionsound!) and they lined up O2 in Phoenix. Checked in today and had 3 E tanks waiting! Like Topical said, try it at home. When you see for yourself how quickly it kills the HA, you won't hesitate.
PF wishes.
Jose
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burnt-toast
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Re: Like a bad penny.......,
« Reply #11 on: Jul 10th, 2005, 1:00am » |
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Air travel is always CH roulette for me - my very first CH attack and some of my worst have occurred in airplanes. I have no answers on flying with CH but know the fear well.
I webt chronic right out of the gate but each period (months, quarters, years, seasons, etc., etc, etc, manifest themselves differently) - your current wacked out cycle doesn't necessarily indicate a switch to chronic - It could just be common variations in symptoms - Get working with a neurologist is probably the best advise.
Weclome back and good luck finding answers.
Tom
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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wip5150
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I have tired head
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Re: Like a bad penny.......,
« Reply #12 on: Jul 10th, 2005, 2:38pm » |
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Thanks for all the thoughts, words and advice. Been a cruddy weekend and no real pattern but, hope springs eternal and I'm hoping that I'll be able to establish one.
Don, point taken and I'll make more of an effort to give and not just take.
PFDAN everyone....
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Jonny
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Re: Like a bad penny.......,
« Reply #13 on: Jul 10th, 2005, 5:52pm » |
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on Jul 10th, 2005, 2:38pm, wip5150 wrote:Don, point taken and I'll make more of an effort to give and not just take.
PFDAN everyone.... |
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Did Don remove a post?.....Hmmmmm
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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wip5150
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I have tired head
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Re: Like a bad penny.......,
« Reply #14 on: Jul 11th, 2005, 10:30am » |
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on Jul 10th, 2005, 5:52pm, Jonny wrote:
Did Don remove a post?.....Hmmmmm
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Oops.......my bad....it was Cazman. Sometimes, I'm not the sharpest knife in the drawer.
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bnfreeman
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Re: Like a bad penny.......,
« Reply #15 on: Jul 11th, 2005, 10:50pm » |
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I started to get CH in October of 2003. Spring of 2004 they went aways only to come back again in October of 2004. I was in the worst pain of my life all winter long. They are not as bad now, but still have shadow or low hits daily. Unless it ends soon I will become chronic this October.  Sucks! But I am trying to stay positive and come here daily for support. Good Luck!
Brandi
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sandie99
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Re: Like a bad penny.......,
« Reply #16 on: Jul 12th, 2005, 4:55am » |
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I'm so sorry that you're back...
You know, I wasn't truly afraid about turning into chronic when I was episodic. But when it happened, the only thought on my mind was: will it ever stop?
I thought it wouldn't. When I had a PF day, it took me a while to understand that because I was so used to my daily torture.
Now I have been PF since April and out of meds since the end of May (I was on Verapamil). I'm still taking each day at the time like I did as a chronic.
If you turn chronic, that's what I suggest you'll do. Take it one day at the time. For your sake I wish you won't turn chronic, but if that happends, you can take it. You're not there yet! And we're here to help you. 
I've survived mine with the help of this lot in here and with positive thinking! (Books by Joseph Murphy, Annastina Vrethammer and Louise L. Hay have been my guides.)
Let us know how things progress, okay?
Best wishes,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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wip5150
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I have tired head
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Re: Like a bad penny.......,
« Reply #17 on: Jul 18th, 2005, 2:38pm » |
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Just to update everyone:
Went to my G/P as my appointment with the neuro is still about two weeks out. He's always been very supportive of me and my clusters so at my request, he perscribed Verapamil (120 mg three times a day). I've been taking it about a week or so and I think it's working. After a few really shitty headaches last week I've been only having them at night and the pain has been fairly easy to deal with. I'm not sure if it's the Verapamil or me coming off my peak and slipping into some pain free time. I'll wait until I have four or five days pain free before I half my dose and wait another four or five before I get off the verapamil altogether. It's just hard to know if it's the drugs or just my cycle - time will tell I guess.
In any event, thanks for all the support - I'm sticking around to add my pithy little comments.
PFDAN to all
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Ever dance with the devil in the pale moonlight? I have, and man it hurts
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Topical
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Re: Like a bad penny.......,
« Reply #18 on: Jul 18th, 2005, 9:21pm » |
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Glad to hear you are finding some relief.
I always wait two weeks before I trim the verap....then again it takes at least 1.5 weeks before it kicks in when I start taking it.
G/L with the neuro. appt.
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