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Topic: Regretably Joining the Ranks (Read 317 times) |
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TermiNix
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Ask me no questions and I'll tell you no lies.
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Regretably Joining the Ranks
« on: Jun 11th, 2005, 4:11am » |
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Hi, my name is Nick (though online I go by the moniker Nix), and I have just started experiencing cluster headaches. It has only been a week and a half, but it has been the longest week and a half of my life.
So, here is a little information about me:
I am 24, married with a child from a previous relationship. I am currently a water well installation technician and pump repairman's helper. I also do web design professionally and am a singer songwriter.
Music that I like tends to be ambient, dark, spooky. The kind of thing you might hear in a horror film. I listen to "goth", industrial and experimental noise music.
Well, that is the stuff that matters anyway.
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<3,
-Nix
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LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
 
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Posts: 11720
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Re: Regretably Joining the Ranks
« Reply #1 on: Jun 11th, 2005, 5:07am » |
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Hello Nix,
Nice to meet you!
I'm sorry you are suffering enough to come and find us though.
Can you tell us a bit more about your symptoms and what meds you are taking?
Have you been diagnosed and if so by what means?
(CH makes us incurably nosey!  )
Seriously, the reason I'm asking is there are a few other conditions which present very much the same as CH but require quite different meds so it could potentially be dangerous to have a wrong diagnosis.
Fourth button down on the left is the cluster quiz. Take that as your starting point and see how you get on. There are some quite rare conditions which do get confused with CH especially by "ordinary" doctors. You really will need to see a headache specialist neuro for an accurate diagnosis and correct meds.
I hope this helps a little bit!
Let us know whats happening okay?
Take care
Helen
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TermiNix
New Board Newbie
Ask me no questions and I'll tell you no lies.
Posts: 9
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Re: Regretably Joining the Ranks
« Reply #2 on: Jun 11th, 2005, 5:18am » |
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Here are my quiz answers:
1-8:
All no except for number 4.
9-16:
All yes.
I was diagnosed with CH by my family doctor. I have been on the drug olanzapine and recently went off the drug without weaning. Perhaps caused CH? I don't know.
Now, the doctor has me on Corticosteroid nose spray and antibiotics.
I don't know what that is supposed to do for the condition, but there ya go.
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<3,
-Nix
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TermiNix
New Board Newbie
Ask me no questions and I'll tell you no lies.
Posts: 9
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Re: Regretably Joining the Ranks
« Reply #3 on: Jun 11th, 2005, 5:21am » |
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Also,
More about my symptoms:
I have pain in the right side of my forehead, my right nostril, my right eye and eyebrow. When this happens, my skin feels bruised, but if I apply pressure in sufficient quantity in the proper areas I have found that I can cause the attacks to sort of artificially abort.
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-Nix
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LeLimey
CH.com Alumnus
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OUCH-US - Less "ME" and more "WE"
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Re: Regretably Joining the Ranks
« Reply #4 on: Jun 11th, 2005, 5:38am » |
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Right we need to get you educated to go back to that doctor with some wepaons against the beastie now!
First of all read the nedical info, look into the drugs available and commonly used.
People sometimes have a steroid taper while waiting for something else such as verapamil to kick in but a steroid taper with no back up is just going to be a band aid (see I'm learning American at last!!)
If you go down the conventional meds toute you will more than likely need a preventative such as verapamil and abortives such as imitrex, zomig and o2. Read up and discuss with your doctor as obviously I am neither a doctor nor do I know the first thing about your medical history so potentially some of these drugs could not be right for you.
O2 I swear by though. It aborts 99% of the time for me.
There are also alternative options. Read the meds board. Some people are using LSA seeds, shrooms, kudzu all with success for them.
The important thing to remember is finding your silver bullet is a matter of trial and error. What works for one will not necessarily work for another and you just have to persevere. Some meds (like verap) take a couple of weeks to kick in (hence some docs giving a steroid taper) so you need to persevere as you can also only increase the dose slowly.
Remember, we are all here in the same boat, We will all help you as much as you can so if you need any support or help or just a place to vent then fire away!
We're pretty good for a giggle too I have to say!
If you have any questions please ask. The only stupid one is the one you DON'T ask
Looking forward to hearing from you again soon
Helen
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TermiNix
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Ask me no questions and I'll tell you no lies.
Posts: 9
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Re: Regretably Joining the Ranks
« Reply #5 on: Jun 11th, 2005, 6:05am » |
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I am so thankful that my wife found this place. I am very interested in the o2 abortive. I have been using a special method of aborting all my own lately. Luckily, I am rather MacGuyver-esque (That means I can make stuff).
Here is what I do:
take 15 painkiller pills (300mg acetaminophen, 8 milligrams codeine) that are sold OTC in Canada, dissolve them in cold water, add a cube of ice to reduce temperature, strain solution through a coffee filter and drink. Makes 120 mg of pure codeine water. This aborts (for me) in about 5 minutes. When I couple this with a headwrap, I can make the headaches almost nonexistent. Has worked for me roughly 70% of the time.
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E-Double
CH.com Alumnus
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Re: Regretably Joining the Ranks
« Reply #6 on: Jun 11th, 2005, 8:48am » |
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Welcome my brother!!!
Remember peace of mind will help you quite a bit and now that you found this place......
START BREATHING AGAIN and ENJOY LIFE!!!!!
This is a great resource to know like the back of your hand...print it out and give it to your doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
***Ask for a script and if needed FIGHT fOR Oxygen... It is extremely beneficial for us (CHer's) and without many of the isdeffects of many a medication.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Educate your doctors!!!
Do you just get them @ night or also during day?.....
If she does have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 8-10 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Here is a letter that you can give your employers, colleagues, professors, students that will explain in very simple language what it is that we go through.
How CH is a misnomer!! Headache..yeah right!
http://www.clusterheadaches.org/Cluster%20Headache%20Syndrome.doc
Also....I noticed that you have taken Zyprexa......
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
Best wishes, good luck to you & stay as positive as you can!!!!
Eric
P.S.
A goth dude huh??????? Get to work, contact Peter Murphy and demand Bauhaus get back together!!!!
P.P.S.
Be careful with the pain killers.......could not only lead to rebounds, addiction but also be very dangerous!!!
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| « Last Edit: Jun 11th, 2005, 8:51am by E-Double » |
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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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nani
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Re: Regretably Joining the Ranks
« Reply #7 on: Jun 11th, 2005, 10:04am » |
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Welcome Nix and sorry you're here. You've gotten really good advice so far. I just have to add one thing...15 painkillers?!?! Keep that up and you're next message board membership will be on the liver transplant boards. Seriously, though, they won't help. Take E Doubles meds list to your dr and get on some meds that will work. Keep us posted. Pain free wishes, nani
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Others may come and go, but MY power is MINE.
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TermiNix
New Board Newbie
Ask me no questions and I'll tell you no lies.
Posts: 9
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Re: Regretably Joining the Ranks
« Reply #8 on: Jun 11th, 2005, 5:56pm » |
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Thanks everyone. You are right about the painkillers. They are like suicide; Permanent solution to a temporary problem.
You have to understand, I was at my wits end, I had no clue what was happening to me and I was in a foreign country when this started. The codeine was like a pacifier.
I have a bit of history with painkillers, but I will save that for later.
...and about Peter Murphy and Bauhaus: I am working on it.
P.S. Everyday is Halloween!
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-Nix
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jokrs2
New Board Old Timer
Eventually He will make us pain free!
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Re: Regretably Joining the Ranks
« Reply #9 on: Jun 13th, 2005, 7:31pm » |
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Hi Nick. Sorry to hear about your battle that you have going on right now. I have got to tell you that I have gone through Methadone withdrawl twice and withdrawl from Morphine Sulfate twice over the last 15 years. (NOT bragging as the stuff just makes you feel sick and tired).Took the stuff everyday but eventually it started to blur one CH hit into another and the rebound headaches made my quality of life a "big zero". Started taking kudzu and not only did it make my last withdrawl easier it was very effective at minimalizing the pain & shadows from clusters. I then moved on to just taking an LSA dose every couple of weeks and melatonin at night. In my humble opinion the less pills we have to ingest the better. It's great to not be out of it with the children too. Blessings, Joe
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