Hi everyone!

My name is Sara and I'm 20 years old.  I've been getting cluster headaches since I was about 10.  I use to see a neurologist and was taking topomax and had the imitrex injections, which seemed to work ok. But now I am without health insurance. (I got married and my husband's work does not supply it) So here I am stuck suffering.  I get my cycles once a year usually around this time or a little earlier in the year.  This one stared just a few days ago, and it's killing me.  I wake up every morning banging my head against the wall.  My husband must think I am nuts. Last year I ended up having to go to the emergency room quite a few times because I just can't handle the pain. I want to try not doing that this year because like I said I have no health insurance and the bills from last year were horrendous. Nothing I do seems to help me at all.  Does anyone have anything you do to help with the pain at home, with no medicine or ER visits?  I'm so desperate right now for any type of relief... even if it means walking around my house in a handstand! lol

hello, I have read that kudzu, and melatonin is helpful if your short on cash. Both can be found at health food stores, or gnc/vitamin world.
Everyone swears by oxygen here so look into getting that. If you cant afford to see a doc and get a prescription. Go to a welders supply store.
Drink redbull at the first sign of a hit. It helps me.
If you can't afford redbull by the case, go to GNC and buy a bottle of taurine, take taurine and drink coffee as soon as you feel hit coming on.

Red bull really? I drink redbull like once a day anyway.. lol I wonder if it would still work then.  I'll have to look into the oxygen thing. One of my biggest problems is the neurologist I use to go to is like 4 hours away. I don't live in the same area as I use to.  So when I do go to the doctors here they tell me it's a migraine, or sinus infection.. etc. So it's a waste of my time and money pretty much. And I can't afford for them to want to run all sorts of tests on me and whatnot.  I think I'll try the redbull. Probably is 99% of the time I wake up in the peak of the pain, would it be too late to drink it then.

Hah I'm half tempted to just drink nothing but red bulls ever and never sleep... then I won't wake up in pain! 

I can crush 3 red bulls and sleep like a baby when in cycle. You are correct, for me, I have to drink it at the first sign of a headache. Doesn't have as good effect on me if I wake up in the middle of the night and it is already pounding. However I still crush one anyway.
Ice packs and cold air outside also help me a little. some prefer heat though.
Doesn't have to be redbull though, anything with taurine and caffeine will do the trick. some cant stand the taste or smell of redbull.
If you decide to try pure O2, they say you have to do it at at least 10-15 lpm. Most regulators dont go that high, so you have to buy your own. Also use a non rebreather mask. The folks around here say it will abort an attack in 5-10 minutes.
My doc hasn't prescribed O2 yet, but I'm going to talk to him about it next time I go

Hi Sara,

Sorry to hear about the insurance thing. I've noticed a lot of that going around here.

So let's concentrate on the free and cheap stuff that can actually abort or prevent CH attacks.

Super vigorous exercise, as in sprint til you drop, works for some of us some of the time, if done at the onset of an attack. Free.

Cold air. Put yer shnoz up to the blasting air conditioner vent (if temperatures are not freezing outside) and breathe deeply for 10 - 15 min. Works for some of us some of the time. Close to free. Chugging a caffeine and taurine packed energy drink right before sniffing might help.

O2. Not Free. BUT for less than the price of one emergency room trip, which you probably wouldn't have to make if you had O2, you could get set some from a welding supply place. and abort a LOT of attacks with it.Read all about it at the oxygen info link to the left of this page.

The clusterbusters approach.. Not always free, not easily accesible to everyone, but cheap and potentially powerfully effective, with reports of it even shutting down entire cycles for some. Besides recent coverage in a National Geographic episode, there's a new Newsweek article that will provide a very good introduction here:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

1. See "helpful hints" file under the first section, "specific".

2. See "water x3" on the left of this page.

3.This med has found a fair amount of support here because it's as effective as Imitrex and about $3/dose, making it affordable. As you read this abstract, note that several people had their attacks stop!

4. Your doc can give you samples and you will know with 1-2 episodes/uses whether it works for you.

5. Print this abstract and give to you doc. If you ask him cold turkey he will freak out but with medical literature to support you....  This med is showing up in several lists of medical treatments for Cluster which means that it's being recognized as effective and safe.

=========

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.

So I tried the red bull this morning. It didn't abort the attack but it did make it noticeably shorter, only about 40 minutes compared to the normal hour or hour and a half.  I did some research on the hospitals and stuff around here. There's a university hospital about 30 minutes away where they go based on your income on how much you have to pay. And they do have a neurologist there. Only problem is I have to go through the ER to get a referral to see him. And that means waiting hours upon hours in a crowded ER with a bunch of sick people risking myself getting sick on top of everything.  I think I might go anyway, it couldn't hurt to get into a neurologist that I could actually afford.  I'll how the next few days go, if my hits get any more frequent I am definetly going.  Based on my past cycles though I am sure they will.  I always start out once a day, then it turns into like 5 a day.. I'll see what happens over the weekend. And possibly go Monday or Tuesday.

Or maybe I'll get lucky and it'll never come back.  ::) yeah right let me keep on dreaming... or not even dreaming really since I can't even sleep!! >:(

I don't wanna be discouraging, but beware that your average neurologist who isn't an actual headache specialist will be a bit of an ignorant bozo regarding CH, and will be inclined to do as much harm as good. :o

Sorry, I know, it sux.  :P

Sara

Heres a trick when going to the ER and you wnat to get in ASAP.Just take with you a can of cambells soup with the top on it that you can open with your hand.Open it and dump on the floor and act like you are throwing up.Make sure you hide the can.This works.By the way where do you live? Pm me i want to help you