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shannara
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Hi, I'm a new member!
« on: Feb 22nd, 2004, 6:19am »
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Hello there everyone. My name is Shannon, though I'm better known as Shannara, and I am a cluster headache sufferer.
 
I've just recently been diagnosed. In fact, about a week ago today I went into the doc's and got the news.
 
For the longest time, I did not know what was wrong with me. I seemed to get these horrible headaches that just would not go away. Sometimes they were sharp and only lasted for ten minutes, other times they lasted up to a few hours. And the headaches were not all I was am facing; I had fatigue, short attention span, and eye swelling to add to the list... among other things. Symptoms you are all or mostly familiar with yourselves, I would imagine.
 
Finally I got the nerve up and went in to my doctor... I told him about my headaches, my fatigue, plus these awful mood fluctuations that I had been getting. After hearing my case, my doctor told me that what I had sounded like a vague cross between mild migraines and cluster headaches.
 
I was not overly surprised to hear this-- I knew what cluster headaches were. I had been researching all possible causes of my almost constant pain.
 
Needless to say, I am to begin treatment for my headaches. I filled my doctor in on the fact that I hadn't really ever bothered with painkillers for my headaches before because they were so often that it seemed sort of silly to constantly be taking pills for them. I know from experience what the effects of codeine are, so I'm somewhat hesitant to be pumping it into my stomache 24/7.
 
The doctor suggested I start with regular painkillers for now and, despite my utter repulsion of the idea, I am doing so. So far it hasn't really had an effect. I'm not sure why-- they could be just too weak. I do however know that if these normal pills don't help any in the next two weeks or so, then I am to go back in and the doc will put me on anti-depressants, which should help with both my headaches and weird mood changes.
 
And that's my story. So far, anyway.
 
Once again, I am Shannara, a 15 year old cluster headache sufferer (or so they tell me), and a newbie to the experience. And while it may not be a friendly road I walk, I would love companions who share my feelings to travel with. After all, no one likes to be alone (except when they really do want to be alone!), especially those in need.
 
Trapped in the lonely shackles of reality,    -Shannara
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Trapped in the lonely shackles of reality, -Shannara.
Kevin_M
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Re: Hi, I'm a new member!
« Reply #1 on: Feb 22nd, 2004, 7:50am »
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on Feb 22nd, 2004, 6:19am, shannara wrote:
hadn't really ever bothered with painkillers for my headaches before because they were so often that it seemed sort of silly to constantly be taking pills for them.  
Trapped in the lonely shackles of reality,    -Shannara

 
Correct, try a second doc's opinion.  Hospitals are opening headache institutes to specialize better.  Painkillers are 'dem lonely shackles.
 
Kevin M
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Giovanni
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Re: Hi, I'm a new member!
« Reply #2 on: Feb 22nd, 2004, 8:33am »
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Hello Shannara,
 
So sorry your were diagnosed with cluster headaches.  You’re a lot smarter than me finding this board within one week and my taking 9 years to find it.  
 
There is a lot of experience here and people of all backgrounds, ages, and various treatment plans.  One thing that you’ll notice is the different medications that we’re taking.  One plan that seems to work on one person may not work on another.  It’s a matter of finding the right combination for you that will work.
 
The best thing that you can do is to educate yourself as much as possible about this condition.  That way you can have some participation in your treatment options.  Pain killers that you noted does not work on a cluster headache.  The most benign abortive is 100% oxygen set a high flow rate 10-15 liters per minute in a non-rebreather mask.  Click onto the link to your left and read about the O2.  If the doc prescribes anything less than this configuration of 02, it probably will not work very well (if at all).  I would print it out and show it to the doctor.  An abortive is designed to stop a single headache or perhaps several headaches.  One of the more popular abortive besides o2 is imitrex injection.  I can speak personally about this one since I have used it over the years.  The imitrex constricts the blood vessels in your brain and within a few minutes, your headache will stop (with most people).  Other board members here will have other suggestions on abortives.  My plan, in the past, has been to try O2 first if that doesn’t work, take an imitrex injection.  Other forms of imitrex are a pills and nasal spray.  The pill is not effective because it takes too long for it to work through your system.  The shot will work with me within 5 minutes.
 
The other category of medication that you should and will be on is called a preventative.  This course is designed to limit or prevent cycles from ever happening.  Unfortunately, the preventatives at best help marginally with most people.  A common preventative is verapamil at 240 mg and up.  You’ll see other preventative type medications listed on this board that have been effective for some people.
 
Another type medication is designed to stop a cycle or shorten it.  Read about this also.  
 
You have mentioned in your post about a doctor.  Is he/she a neurologist?  If not, you need a referral to one that is familiar with cluster headaches.  This is a very rare syndrome and not well understood by most general physicians.
 
Again, welcome here and come back often.
 
Regards,
John
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Paigelle
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Re: Hi, I'm a new member!
« Reply #3 on: Feb 22nd, 2004, 8:51am »
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Sorry you had to join us here, but glad you have found the support and the chaos.
 
Please find another Dr, the one I had this year insisted that I take painkillers...it is nothing but a waste of money.
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Bob_Johnson
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Try one of these books.
« Reply #4 on: Feb 22nd, 2004, 11:12am »
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Absolutely agree that you need to start looking for a doctor with experience and sophistication in working with all types of headache.  
 
Pain meds as a first response to cluster is a sign of a doc who is unware and/or not up to date.
 
Since many people have a hard time finding a good headache doc, we depend on educating ourselves so that we can, in turn, educate the doc we have to work with.  
 
Would strongly encourage you to get the last of the books below. It will give you a good overview of your situation and how to treat it.
 
HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.
 
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. 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: Hi, I'm a new member!
« Reply #5 on: Feb 22nd, 2004, 11:43am »
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If not another Doc then at least try to educate the one you have. Raed the hell out of this site to determine which preventatives and abortives may be effective for you.  
 
Being alone is fine, being loneLY sucks. Look here and you will never be alone in your pain again;
 
http://www.clusterheadaches.ca
« Last Edit: Feb 22nd, 2004, 11:46am by don » IP Logged
Charlie
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Re: Hi, I'm a new member!
« Reply #6 on: Feb 23rd, 2004, 1:52pm »
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Welcome aboard and sorry you are starting with this horror.  Painkillers are useless for clusters and waste of money. Pay attention to what you read about meds here and at your age, you may have good results with them as circulation is a factor.  
 
You need a doctor who has up-to-date information on clusters and who will send you to a neurologist for boring tests (they always run the tests) and later try some preventatives.  You'll find some good ideas here and ways to deal with your cycles as well.  
Here are a couple links that may be helpful. The first being a technique that worked for me:    
 
http://www.netsync.net/~charlies/
 
This next one is a letter written by a fellow cluster headache sufferer that is the best of its kind to help explain these attacks to families, friends and employers. Its author encourages copying. It’s well worth it:
 
[url]"http://www.ouch-uk.org/ch/note_colleagues.cfm"  
[/url]
 
Good luck and let us know how you're getting along.
 
Charlie
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Prense
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Re: Hi, I'm a new member!
« Reply #7 on: Feb 23rd, 2004, 7:10pm »
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on Feb 22nd, 2004, 6:19am, shannara wrote:
my doctor told me that what I had sounded like a vague cross between mild migraines and cluster headaches.  
 
-------------------
 
The doctor suggested I start with regular painkillers for now and, despite my utter repulsion of the idea, I am doing so. So far it hasn't really had an effect. I'm not sure why-- they could be just too weak.

 
This doctor is not going to help you.  The only thing you need from him/her is the signature on the prescription.
 
CH is in no way "mild."  Furthermore, you can worsen your current situation with these types of meds by getting into a rebound cycle.  
 
John gave you some outstanding advice!
 
Stick around and welcome aboard!
 
Chris
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Re: Hi, I'm a new member!
« Reply #8 on: Feb 23rd, 2004, 8:59pm »
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hi  im new also  i just finally relized this is what i had  i suffer with mine in the wee hours of the morning  i take aleve  before i go to bed and i wear a tight hat  it helps  to keep my head warm and under pressure  i also have  my 1 eye and nose just watery and running all the time i would give anything to get rid of these i get really drepress and wish sometime i were dead  just so i do not have to feel this alwful pain  good luck and i hope  you find a cure  Roll Eyes
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Re: Hi, I'm a new member!
« Reply #9 on: Feb 24th, 2004, 1:00am »
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Well said peepes...............nothing to add here by me.  
 
Nice to meet you Shannara, you'll find a lot of great reseach in here.
 
Keep us posted and if you have any questions throw them out there, somebody always knows something about something...... I think I know what I thought I said.
 
Sean
 
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Giovanni
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Re: Hi, I'm a new member!
« Reply #10 on: Feb 24th, 2004, 2:34am »
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Hi Shannon,
 
I have been corrected by pm that some cluster headaches people here have good results with O2 at much lower flow rates than 10-15 liters per minute.  I do not want to misinform you about this therapy.  Still click onto the link to your left on O2.  Hope you're feeling better.
 
John
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moonstar
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Re: Hi, I'm a new member!
« Reply #11 on: Mar 9th, 2004, 11:00am »
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Huh Huh im new around here i went to the dr office due to migrains they gave me topaman now my hair is falling out and i can talk to my family but they dont know what im going thru i was just wondering if there were anyone in here that would help me thru this???
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Robert the.......
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Re: Hi, I'm a new member!
« Reply #12 on: Mar 9th, 2004, 11:10am »
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Moonstar,
 
Start a new threat in the gettin to know YA bit, give everyone a description of what you are suffering from and we will give you the advice and sounding board that we all sometimes need.
 
You are amoung some very experienced sufferers and a lot of people looking for solutions and just others that know the pain.
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moonstar
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Re: Hi, I'm a new member!
« Reply #13 on: Mar 9th, 2004, 11:24am »
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ok, well in the front right side of my head i have a knife like stabbing pain. it will last for hours. i went for an mri to see if there was any thing that was causing them, they called back and said the did find something on the left side and that scares me because i have a 7 year old that needs me. i was taking topamax and my hair started to fall out. im at the point where i dont know what to do they want to keep giving me meds to find the one that works but i do not want to be a test dummy ya know what i mean??
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Re: Hi, I'm a new member!
« Reply #14 on: Mar 9th, 2004, 12:10pm »
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Moonstar,
 
The stress you are under is huge i don't envy you my friend. but if possible try and not worry (I know easy to say easy to right I ain't you and won't preach)
Have you been told what they have found? I don't want to know but just so long as they have told you what they believe it is. Be strong.
As for the TEST dummy. there isn't one poster here that hasn't been on and off all sorts of MEDS. I'm used like a Lab rat by my GP some meds work some don't if they don't or have side effects you go back and get them changed. It's the only way the custerheads here get through the almost daily struggle with the pain in our heads. We aren't doctors so nobody here can tell you what works and what doesn't just work with the GP's.
You say your 7 year old needs you? Well that 7 year old WILL need you and for you to be there you have to trust your DOCS and try everything and I mean everything that they suggest.  
 
Be Strong  
 
Scott
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Re: Hi, I'm a new member!
« Reply #15 on: Mar 9th, 2004, 12:31pm »
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Hang in there Moon, we've all went through the same thing. Most of us have went awhile without the proper meds for us, and even then the meds can stop working or we reach the maximum dose and we have to try somethingelse. Hang tight and hopefully you'll find yours.  
 
Have you tried O2 yet. Trex and O2 are my guns of choice for abortive. Prednisone is my preventative..................yukk, however I do get some relief  and I'll do whatever it takes to make him go into submission.  
 
Keep us posted
 
Wishing you PFDAN Cheesy
 
Sean
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Re: Hi, I'm a new member!
« Reply #16 on: Mar 11th, 2004, 4:59pm »
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Shannara ,  Do you have a neurologist ? You need to be on other meds , I am with the others on seeking another opinion here . Narcotics are usually a mask for the pain and dont abort the demon . There are so many meds out there , and waiting to see what works is hard enough. Best bet get a neurologist , another opinion. Let us know how you are doin.. Cool
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