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Hello I'm alannah! (Read 1239 times)
Alannah
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Hello I'm alannah!
Apr 7th, 2015 at 8:05am
 
Hello everyone,

My name is alananh and I am 21 years old. I was diagnosed with cluster headaches in the summer of 2014 but I have been having them since 2010. My doctor had no clue what was wrong with me so she sent me to a neurologist and he then diagnosed me with cluster headaches. Unfortunately my doctor doesn't know much about cluster headaches. She recently prescribed me imitrex? I believe that is it. In 3 weeks I will no longer be a student so I am not covered under any benefits, and each dose of imitrex costs about $50. I get my headaches around 4 times a week so I'm spending almost $200 a week for medication!!

I luckily do not et severe cluster headaches. They last be about 45 minutes and I'm able to relax and lay in bed until they go away. Unfortunately I get "headache hangovers" so if I dont fall asleep after my attacks I will feel like complete poop all day. These headaches really do suck since there is no cure. They ruin my days. They interfere with my life. Some days I can't go to school or work because of them. I have exams coming up soon and I'm terrified im going to have an attack before an exam and not be able to go to school. I also suffer from anxiety so that makes every thing much worse!

Over the past 4 years I haven't found much to help me with these headaches except relaxing in bed and pretending they don't exist. I would prefer oxygen treatment over the imitrex but I'm not sure how to get that. If anyone could help me that would be great. I recently tried running A535 on the affected area and it has helped for about 20 minutes which is great!!

I'm so thankful for this forum and that us cluster headachers can help each other out!!!
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Bob Johnson
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Re: Hello I'm alannah!
Reply #1 - Apr 7th, 2015 at 9:11am
 
Act quickly before you lose your insurance coverage!

Print the PDF file, below, and give to your doc. You read it first so that it can be used as a tool to have a good discussion.

Talk about starting a med which works to prevent attacks. Verapamil (on the print out) is the most widely used for this purpose. Once it becomes effective it will cut the number of attacks and cost is not too bad.

Print the following and talk to the doc about trying it as an abortive, to take the placeof Imitrex and notice that it stops Cluster totally, in some cases. IF it works for you, and you will know with one or two trys, it's inextensive, has the convenience of a pill (to have with you anywhere you go). (It became my abortive after the first try--it was so fast acting and effective.)

Oxygen is effective but has a short life and then there are the problems of carting it around in school, etc.
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Headache 2001 Sep;41(8):813-6 

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.

PMID 11576207 PubMed

--------------------------------------------------------------------------------


Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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« Last Edit: Apr 7th, 2015 at 9:24am by Bob Johnson »  
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Bob Johnson
 
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maz
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Re: Hello I'm alannah!
Reply #2 - Apr 7th, 2015 at 1:55pm
 
What kind of imitrex do you have. The tablets take far too long to get into your system, and therefore your 45 minute headache will be over by the time they take effect. If you can, get the auto injections as they will abort a really bad attack in about 5 minutes, which will be a great help at the time of your exams.

If you are episodic, try to buy a few injections when you are not in cycle and stockpile them. You will be prepared for next time and it also helps to spread the cost.

Oxygen is almost as good as imitrex injections if you use it properly. You must have a flow rate of at least 15 liters per minute (more is better) with a non-rebreather mask. If you get either of those wrong it won't be as effective. Use the 02 while you are at home and save the expensive injections for when you are out.
Maz.
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« Last Edit: Apr 7th, 2015 at 1:59pm by maz »  
 
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Hoppy
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Re: Hello I'm alannah!
Reply #3 - Apr 7th, 2015 at 8:29pm
 
Hi Alannah and welcome,
Maybe take the cluster quiz, the link is to your left on this
page, the reason I say this is because with CH's their is no
way you can lay down and relax until they go away.

Hoppy.
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maz
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Re: Hello I'm alannah!
Reply #4 - Apr 8th, 2015 at 3:36am
 
I agree with Hoppy. There are many different headache types which produce the same symptoms - but they all respond to different drugs. Because they are so similar they are more often than not misdiagnosed, even by neurologists, as it was in my case. It's almost impossible to keep still, let alone relax, during a CH.
Maz.
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