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Lippy
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Hello All From a New Member
« on: Dec 1st, 2007, 8:06am »
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Hi all. My name is Daniel (but just call me Lippy). I'm 32 years old and come from Newcastle, in Australia. I have been suffering from CH's for the last 14 years, and it is such a relief to realize that i'm not alone with this life changing illness. Well, there is a funny story about how I ended up here. Ever since I started seeing the doctor about my headaches some 14 years ago, she never really diagnosed me with any type of condition, I just assumed they were migraines, because of the immense pain. So for the next 9 years, I kept seeing the same doctor, thinking I suffered from migraines. Then, about 5-6 years ago, after moving to another area, I decided to change doctors. Now this is the funny part. As soon as I sat down and explained to him what I was going through, he basically straight away, diagnosed me with Cluster Headaches. The thing about that though, was that I had never heard of Cluster Headaches before, so I was still convinced that I suffered from migraines, and assumed I had been misdiagnosed, because I thought migraines were the most painful headaches you could have, and Cluster Headaches didn't sound that serious (boy, was I wrong Undecided). So for the last 5 years, i've been living with these "migraines", not knowing that they were infact Clusters. All I was taking for the pain was aspirin and codeine. If I took the tablets soon enough, I could reduce the length of the headache by a few minutes, but not the severity of the pain. I could feel the codeine working as it reached my head, and that was one of the best moments of my life, to feel the excruciating pain slowly declining. A few years ago, I started to research migraines, and the symptoms just weren't the same as mine. They were saying migraines ranged from 3 hrs up to 72hrs or so, and I thought it was a bit strange, because my headaches were only lasting about half an hour. I just thought that I was only suffering from mild migraines, and felt sorry for these people that had these migraines that lasted for days! Anyway, just today I remembered that all those years ago, my doctor told me I suffered from Cluster Headaches, so I decided to do some more research, and straight away, I knew my doctor was 100% right Roll Eyes The symptoms were exactly the same, from the length of the headaches, right through to the headache "cycles", which mine has started recently, after laying dormant for the last year or so. So here I am, finally arriving at this great site, even if its 5 years too late! Ok, heres some info that hopefully might help someone out. I had been taking a drug called Inderal, which is a preventative my doc prescribed for me when he first diagnosed the clusters years ago, but I stopped taking them a couple of years ago, because they were ineffective in preventing the headaches. When my last cycle started, I decided to give Inderal another go, but still no results. I was taking 1 tablet, twice a day. Each tablet contains 40mg of Propranolol Hydrochloride. So, out of desperation, I decided to take matters into my own hands, and doubled my daily dosage to 2 tablets, twice a day, and guess what, it worked!! 2 days later, CH's disappeared for what I thought was for good, until another cycle started just recently. I headed straight down to the doctors and grabbed another prescription for Inderal, doubled my dosage, and at the moment, i'm pain free again, so hopefully i've found my "cure". If it works for me, it can hopefully work for others, so if you haven't yet tried Inderal, it might be worth it, because prevention is better than having to abort a Cluster. Hopefully, I can be of help to some of the fellow sufferers here. Let me know how you go. Talk soon - Lippy
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Bob_Johnson
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Re: Hello All From a New Member
« Reply #1 on: Dec 1st, 2007, 8:38am »
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Glad you found us and there are several of you mate who will introduce themselves shortly.
 
First, there is much information to mine by exploring the buttons (left) which will reveal many links. Going to throw two items at you because, first, you need a major change in medications. Read the first two links and you'll see the most current thinking on treating Cluster. (May want to print these articles and share with your doc who needs some upgrading!)
 
The books are especially good for a coherent approach to headache. But, not too much for the first trip!
=====
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
================
Treatment guidelines from Europe
 
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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:  
EFNS guidelines on the treatment of cluster headache and other  
trigeminalautonomic cephalalgias.  
European Journal of Neurology. 2006; 13: 1066–1077.  
 
Download free full text:  
http://www.efns.org/files/guideline_49.pdf  
(Thanks to "cluster" for link.)
 ==========================
 
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."Wink
 
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
 
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Re: Hello All From a New Member
« Reply #2 on: Dec 1st, 2007, 9:20am »
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  Doubling your dose of inderal on your own could kill ya.How bout giving oxygen a try?
 
     Potter
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Lippy
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Re: Hello All From a New Member
« Reply #3 on: Dec 1st, 2007, 9:48am »
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Thx Bob for the info, very informative
 
on Dec 1st, 2007, 9:20am, vietvet2tours wrote:
  Doubling your dose of inderal on your own could kill ya.How bout giving oxygen a try?

 
Even though I doubled my dosage, its still a very small amount. I think my doctor said you can have up to 400mg a day. The Inderal seems to work fine, so for now i'll let sleeping dogs lie. If that fails, I'll look into the oxygen. Thx
 
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Re: Hello All From a New Member
« Reply #4 on: Dec 1st, 2007, 9:50am »
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on Dec 1st, 2007, 9:48am, Lippy wrote:
Thx Bob for the info, very informative
 
 
Even though I doubled my dosage, its still a very small amount. I think my doctor said you can have up to 400mg a day. The Inderal seems to work fine, so for now i'll let sleeping dogs lie. If that fails, I'll look into the oxygen. Thx
 

 
  Knock yourself out.
 
  Potter
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Charlotte
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Re: Hello All From a New Member
« Reply #5 on: Dec 1st, 2007, 11:55am »
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I have used inderal twice in the past, once at 20mg X2 daily which did nothing but aggravate my allergies, and in 2006 at 60 mg once a day - which cut pain level 8 back to 6. At the time, for me, that was so much better that I was relieved.  
 
You may want to ask your doc about verapamil, because for many of us, it really helps much more than Inderal.
 
Good luck.
 
Charlotte
 
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Re: Hello All From a New Member
« Reply #6 on: Dec 1st, 2007, 1:15pm »
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Hi Lippy!  Welcome to the nut house.  There are lots of helpful folks around here with loads of experience with these damn things.  It took me 14 years of suffering to find the place myself so don't feel too bad.  Unfortunately it not uncommon for folks with CH to go miss-diagnosed for a long time.  The important thing is that you are here now.
 
I use Oxygen to abort my attacks.  If I get on it quick enough I can abort a hit in 10-20 minutes.  If it's a day time hit I slam an energy drink before hitting the O2.  This combination will keep the beast at bay for a while.  I use Imitrex injections as a last resort or for the "wake me up" hits.  Imitrex injections work in 10 minutes and has never let me down.
 
I'm still looking for my magic bullet in the preventive department.  I've worked with Verapamil and Neurontin but haven't found the right combination yet.  I usually get a lot of night time hits and found that 9-12mg of Melatonin a half hour before bed worked really well.  I got more sleep this past cycle than any in years.
 
I think what Potter was getting at is it is NEVER a good idea to self medicate.  You need to get your Doctor on board with any changes you think need to be made.  None of us are physicians.  I assume that includes you too.  So be safe, be smart, read everything, print out what is useful and bring it to back up your arguments.  Any Doctor that won't work with you needs to be dumped.  Sometimes it can take a while to find a good one but the search is worth it.  Experts in CH are few and far between.  A Doctor that is willing to work with you and learn is what you need.
 
Good luck brother...
 
-Dennis-
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Lippy
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Re: Hello All From a New Member
« Reply #7 on: Dec 1st, 2007, 4:40pm »
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Thx guys and girls for all the advice and support, its greatly appreciated. I'm taking your advice on board for possible use in the future. And I know increasing my medication is not a good idea, but i've done it for the last cycle, and now this one, and so far i've had 100% success. Headaches stopped straight away. I can't be happier at the moment. And its not a problem with my doctor, he knew straight away that I had CH's, its just that I failed to communicate with him about my increase in dosage, so i've kind of left him in the dark. I didn't even talk to to him last time, my wife had to see him, so I got her to get me a prescription while she was there. All I know is that it works, so I don't want to change anything at the moment. But the next time I go to see him, I will make sure I sit down and explain it to him, so he is aware of whats going on. Thx - Lippy
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AussieBrian
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Re: Hello All From a New Member
« Reply #8 on: Dec 3rd, 2007, 12:18am »
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G'day Lippy, and I can think of thousands of places I'd rather have met you than here (think beer) but as a CHead you've at least fallen into the right hands and welcome.
 
Firstly, as above, take care with self-medication.  Secondly, the immitrex mentioned is called immegran here in Oz and is a godsend to many in either the injectable form or as a nasal spray - just make sure you're sitting comfortably when the chemist tells you the price.
 
Another really good thing to try is oxygen.  Our good friend Mad-Barry in Karatha took a bit of time off from hugging trees and passing water to put a link together all about it.  Just click here   http://mushys.com/kiwi
 
Also, if codiene is working for you even a little bit, talk to your vet about Panadiene Forte.  It's a mix of codiene and panadol and I found it quite effective for the smaller ones especially if washed down with a strong hot cuppa coffee.  Red Bull enery drink has also turned out to help many - chuggalugged ice cold at onset.
 
Either way, good luck and stay in touch,
 
Brian up north.
 
« Last Edit: Dec 3rd, 2007, 12:23am by AussieBrian » IP Logged

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Lippy
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Re: Hello All From a New Member
« Reply #9 on: Dec 3rd, 2007, 2:16am »
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Thx so much for the info Brian. Its good to see I have a few options up my sleeve, incase the Inderal fails. But as long as the Inderal is working, i'm not changing anythingWink. I couldn't be happier at the moment, the headaches stopped immediately after I started the Inderal, so I guess I am a lucky one! Talk soon - Lippy
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Re: Hello All From a New Member
« Reply #10 on: Dec 3rd, 2007, 10:30am »
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You listen to your fellow Aussie...he knows of what he speaketh!!!! Wink Glad to hear you have a tool that's working. The bad news is almost nothing works on these things forever, they morph so damned often. Do lots of reading, have several back up plans in place in case it breaks through your current medication.
 
Congrats on finding a fix, it really is a powerful feeling to beat the beast down, isn't it? Grin
 
Guiseppi
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