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        Cluster Headache Help and Support >> Cluster Headache Specific >> Getting Worried
        
(Message started by: BC_Battler on Jan 15^th, 2006, 3:24pm)

Title: Getting Worried
Post by BC_Battler on Jan 15^th, 2006, 3:24pm

Hi everyone -

I'm 3 weeks into my first experience as a CH sufferer (diagnosed by GP and emerg doc - I'm going to see a neuro soon) and things just keep getting worse.

The shadows never go away and I went from having one or two bad attacks a day to having three during the day yesterday and four more through the night (midnight, 2:00 am, 4:00 am, and 7:30 am). I am using oxygen to abort and it seems to be working, but the frequency of these attacks is really starting to take its toll. I haven't had a normal nights sleep in weeks and I have no idea how I am going to function at work tomorrow (I'm a speaker and am contracted to facilitate a week of training starting tomorrow - it's tough to hide when you're at the front of the room!).

I've been arming myself with as much info as possible, and have read much of the info available on this site. I do have Imitrex (nasal spray) in the house, and my oxygen tanks are full. I'm trying to drink a lot of water and take care of myself but I feel like there's no end in sight. Any advice on how to cope when you MUST go to work?

Thanks everyone.

Title: Re: Getting Worried
Post by E-Double on Jan 15^th, 2006, 3:34pm

Stay as positive as you can and have meds stockpiled and ready for battle if/when needed.

Life goes on ya just need to live it!

Took me a long time to stop questioning the "Beast" and to get motivated to start living.

I'm a Special education teacher/Board Certified Behavior Analyst and run home schools for developmentally disabled toddlers. I also lecture around NY and train teachers entering the field.
I go from house to house all day and have to teach, counsel, and train. It gets hectic but I have learned to never leave home without my meds regardless how I feel(sometimes feel great....then BAM!)

Keep your chin up and remember... "IT IS WHAT IT IS" so breathe and try to live to the best of your abilities.

Oxygen is key for us, however, you may need some other things at your disposal when lecturing.
This is a great resource to know like the back of your hand...print it out and give it to the doc

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!

I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753

Since you do have the "typical" wake 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 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....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.

I am not sure if you can obtain melatonin in Canada, howver I have read about Gravol, which some Canadian clusterheads use.

Best wishes, good luck & stay as positive as you can!!!!

Eric

Title: Re: Getting Worried
Post by Linda_Howell on Jan 15^th, 2006, 3:55pm

Since you say you're already on Imitrex...ask your Neuro for AMERGE.

It is a Triptan also and it is meant as an abortive but it takes so long to work that it is not much use as an abortive. So I use it as a preventative when I needed a good nights sleep. YOU may think about using it about an hour before you have to be up in front of a room. I have found it is good for about 6 to 8 hours.

Disclaimer: Don't mix the Triptans though. Use one or the other.

Good luck to you. Linda

Title: Re: Getting Worried
Post by MJ on Jan 15^th, 2006, 3:56pm

BC

Its pretty tough when your being watched all day.

The only thing I could suggest is any stimulating compound ie; Red bull drinks, strong coffee, other energy drinks and the like. But these may make you a little jittery. Its a trade off.

We all understand the sleep issues and exhaustion only increases the CH. I'm not sure for you if this is the time to try other things as they can shake things up in other ways. Then again mental accuity is allready suffering.

Much success has been had by some with melatonin for sleep.
I have used low dose ephedrine successfully in similar situations in the past. Unfortunately you are asking for a quick fix that just isnt there to my knowledge. Aleve (Naproxen sodium) sometimes helps me with shadows that just wont go away but can make the hits harder too..

Best advice I can give is know your exits and the time required for an attack. Try repetitive excercises while being hit for a rapid recovery, be extra carefull what you eat, eat light and believe that stress will keep the attacks away while you perform.

Wishing you the best.

MJ

Title: Re: Getting Worried
Post by BC_Battler on Jan 15^th, 2006, 4:31pm

Thank you, thank you, thank you for all of your suggestions. I know I'll get through it, as all of you have, but I certainly appreciate the support.

I'll plan my exits as suggested and will keep some Red Bull on hand, as well as my Imitrex - it's the only med I have until I get to the neuro. As for melatonin, I'll look into it but I don't think it's available here.

Thanks again -
Cheers.

Title: Re: Getting Worried
Post by marlinsfan on Jan 15^th, 2006, 4:49pm

drink a lot of coffee at work :-[

Title: Re: Getting Worried
Post by broomhilda on Jan 15^th, 2006, 10:41pm

Welcome fellow BC Battler, sorry you had to find us but welcome home :) Everyone here has responded with valuable and great input and I hope you find some pf time soon. In terms of melatonin, you should be able to purchase it at any London Drugs or Shoppers, I am not sure where you live but if you need anything there are a few of us in the BC area. Feel free to check into OUCH.CA and post and if there is anything we can do to help, we will, ...

Good luck and keep fighting

Andrea

Title: Re: Getting Worried
Post by Melissa on Jan 16^th, 2006, 7:11am

In addition to the great advice you've been given here, also learn to live with little sleep. I complained to my husband about how I cannot get a full nights sleep due to the hits, and he reminded me how he normally only gets in 4-5 hours a night. Sometimes he's up for 48 hours straight and still manages to function.

Humans sometimes forget we are very able to adapt to pretty much anything. ;)

Hugs to you, and try to "live" in your PF time.

mel

Title: Re: Getting Worried
Post by taraann on Jan 16^th, 2006, 1:59pm

Also try sleeping in a recliner or as propped up as possible. During my worst times just laying down seemed to make my ch worse. Some ppl have said exercise will abort (then again others say it makes it worse). When I have no meds I depend on cold stuff for my head. I personally like a frozen washcloth, I used to swear by frozen peas until I would put them down and then forget about it until I smelled yucky peas that had fallen behind diff things in the house :-[ ;;D. I also try to MAKE myself remain calm by taking deep breaths (keep repeating to myself, in through the nose out through the mouth) cause many times I have made a CH attack more unbearable by freaking out.

Just a few of my silly coping methods that I use during medfree (or medless) times

Title: Re: Getting Worried
Post by BC_Battler on Jan 17^th, 2006, 1:42am

Thanks again for all the suggestions.

As for living on little sleep, I am really amazed at how my body is adapting to this new regime. I never get more than a couple of hours of uninterrupted sleep now and I can't believe how I'm actually beginning to get used to it.

I tried the cold thing and had a good response, so thank you for that idea - it definitely helped!

I had a full day today, facilitating an 8-hour session. It's the first time I've been on my feet for more than hour or two since this cycle began and I made it through with flying colours! I had shadows all day, but no attacks. The bad news is that tonight has been one of the worst nights ever. I've had a contstant HA all night, just hovering there at about a level 7 and nothing I do (oxygen, meds) will take it away. I'm getting tired of this but am coping.

Thank you so much for all of your support.

Title: Relpax works on the
Post by Richr8 on Jan 17^th, 2006, 2:05am

ones that linger and hover for me.

Rich

Title: Re: Getting Worried
Post by Bob_Johnson on Jan 17^th, 2006, 8:56am

Ask your doc for a sample; you will know within one or two doses whether this works for you. The advantage, when working, of taking a single pill (vs. injection,etc.) is self-evident.

1: 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.

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

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.