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Topic: Glad to know I'm not alone anymore (Read 214 times) |
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bearbadger
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Glad to know I'm not alone anymore
« on: Jan 10th, 2005, 6:35pm » |
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I stumbled on this site a few weeks ago when another cycle started and I've really enjoyed reading the posts. It feels so comforting to know that others can understand what I go through. In some ways I am fortunate that my mom used to suffer from CH also and has been a great help and support for me.
A very quick history...
I suffered from my first attack when I was 18. Because my mom also suffered from them when I described the pain she knew what it was and took me to the Dr. I don't remember what they gave me but it worked and I think I only had a couple headaches. Over the last 17 years I've only had6-8 other cycles - which after reading the posts here seems like heaven!! Unlike most people I do prefer to lie down in a dark room with an ice pack pushed against my eye as hard as I can. I often cry, whimper and rock my way through the pain. 90% of the time they come at night - usually 2-3 per night during a cycle. They usually last 1-2 hours. My pain would probably range from a 6-9 any given attack. During a cycle I also have shadow headaches all day long. Up till now I've used ergotomine twice a day for 2 weeks. It usually helps once I take it and I just have shadow headaches the rest of the cycle.
However this time has been different. I suffered for 3 days before I could get to the Dr to get a prescription. Once I started taking it the headaches quit coming for about a week and then they came anyway so I changed how I took the cafergot. Instead of taking it AM and PM I waited until I got a headache and then took one. It killed the CH within like 20 minutes and I didn't get anymore that night. That worked for a few days and then the paint still didn't go away. After suffering through a couple more nights they seemed to stop. Then last week I had one (after eating things I've been told could trigger them). Then none until last night, I had 2, again after eating the same foods. (bleu cheese, bacon and MSG.) I've never been able to tie them so directly to what I've eaten. I'm trying to get to the DR tomorrow and I'm not sure where to go from here.
Obviously I'm not going to enjoy these favorite treats again but I'm seeing a different DR and don't know what his understanding of these headaches will be and would like to have some tretment ideas of my own to suggest if I need to.
I guess that's all for now. Thanks ahead of time for all the support and friendship I know I will find here!
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LeLimey
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OUCH-US - Less "ME" and more "WE"
 
 
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Re: Glad to know I'm not alone anymore
« Reply #1 on: Jan 10th, 2005, 7:25pm » |
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Hello bearbadger, nice to meet you! There is as you have probably seen, a wealth of info here so grab as much as you can. My personal favourite is O2 which works brilliantly and is side effect free. works quicker than the 20 mins you are currently putting up with too. There are other faster acting treatments too which it might be worth investigating and discussing further with your doctor. If you have any other questions please ask, and let us know how you are getting on too!
Take care
Helen
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Bob_Johnson
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Re: Glad to know I'm not alone anymore
« Reply #2 on: Jan 10th, 2005, 8:05pm » |
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I used ergotamine in the form of Ergomar for many years with the same kind of experience you described. You might print out this message and ask your doc for a trial. I have found the relief to be superior and total.
1: Headache 2001 Sep;41( :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.
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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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Bob Johnson
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dagger
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Re: Glad to know I'm not alone anymore
« Reply #3 on: Jan 10th, 2005, 8:43pm » |
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Do you take it orally, as a nasal spray or an injection?
dagger
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nani
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Re: Glad to know I'm not alone anymore
« Reply #4 on: Jan 10th, 2005, 8:48pm » |
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Welcome b.b. and sorry you're here. You have found a place to get info, advice and support. You are absolutely NOT alone. We can be pretty amusing sometimes...here's hopin I make you chuckle at least once. 
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Others may come and go, but MY power is MINE.
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RichardN
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Re: Glad to know I'm not alone anymore
« Reply #5 on: Jan 11th, 2005, 12:57am » |
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Welcome to the nuthouse bearbadger,
.......and better bunch of lunatics you won't find anywhere!
Read, read, read . . . copy all pertinent info and take to your doctor. Much information here and folks who understand your pain.
I am one of the many here who uses 02 as an abortive and it is my "miracle-in-a-cylinder" and can kill the beast in minutes if used at first sign of ch. Verapamil (240mg) is my abortive and I take 6mg of Melatonin each night. Also water/water/water.
If you live with someone else, you might as well tell them now, you just picked up an addiction . . . .this place.
Open 24/7
PFDANs,
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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CC2004
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Re: Glad to know I'm not alone anymore
« Reply #6 on: Jan 11th, 2005, 6:16am » |
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hi bearbadger - sorry you have to be here but glad you've found us - its been a lifesaver for me!
Just a note re food triggers - it seems to be my experience Im more susceptible to food triggers as cycle is increasing and peaking and I need to be pretty careful (cheese, bananas  , possibly yoghurt & other dairy foods ?) but biggest trigger for me is alcohol and instead of usual 20-40 minute hit, I get slammed for hours if I have alcohol 
Also common trigger can be going from activity to inactivity, ie rest or relaxation - hard to cope with when you're exhausted from the hits and lack of sleep
While you're getting your head around meds, do try water water water - it began working for me the very first night - blessed relief  - PM (private message) me if you want more info
and as the other good people here say, read read read and ask questions, and keep in touch!
take care and keep strong
CC
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Langa
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Re: Glad to know I'm not alone anymore
« Reply #7 on: Jan 11th, 2005, 9:31am » |
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Welcome Aboard BB... 
Langa
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maureen
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Re: Glad to know I'm not alone anymore
« Reply #8 on: Jan 11th, 2005, 6:27pm » |
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hello I have had CH for 19 yrs just found this site last week and love it 4 yrs ago I started taking verapimil. with this cycle I have noticed a big difference attacks went from 2 - 6 a day to 1 -2 everyother day so maybe something to talk to your dr about when I first started them it was half way through a cycle and within 2 to 3 weeks I saw a big difference. I to 02 when attacks hit works great hope you find the info your looking for. Welcome Maureen
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