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        Cluster Headache Help and Support >> Cluster Headache Specific >> My first time
        
(Message started by: Bigsouth1999 on Apr 11^th, 2006, 4:46pm)

Title: My first time
Post by Bigsouth1999 on Apr 11^th, 2006, 4:46pm

Just wanted to say that this is my first time on this site. I never knew that it existed. If I had, I would have been here long ago.
I started suffering from these cluster headaches in 1996, of course, I didn't know what they were at that time. I was sure I had a tumer. It lasted for about a week and the next time was two years ago. It was then I was diagnosed with cluster headaches. It was then that I had my first oxygen treatment. Low and behold, it seemed to go away after the treatment, that is....until two months ago!!!!! :'( This time, I've had two treatments and the results are not the same. Although, it does seem to help a little, I know what will be looming in the night.
I had two attacks last night and I was up from 11:30 p.m to 5:30 a.m. This has been happening for going on 7 weeks now. As bad as I hurt, I feel worse for my wife. She wants to help, but knows she can't. Maybe one day it will end but right now, I just try and take it, one hour at a time. Some times it pops up during the middle of my work day and that's the worst it seems. I can't find a dark corner to hide in and cry. I just hope I can drive home without killing some one one the way. to kill myself would be a relief. I say that not really wanting to kill myself it's just that's how it feels.
In a weird way, I'm glad I found this site because suddenly, I don't feel so alone but, I would never wish these cluster headaches on any one and I'm sorry if any of you are dealing with these. I wish I could do something to help all of you but the truth is, I can barely hang on myself.

That being said, I hope you guys don't mind if I come back and visit.

Title: Re: My first time
Post by AussieBrian on Apr 11^th, 2006, 4:50pm

Welcome home, BigS.

Title: Re: My first time
Post by LeLimey on Apr 11^th, 2006, 5:02pm

Big this family is here for you AND your wife!
You may not have noticed yet but we have a whole section devoted to supporters of sufferers (your wife is welcome to post on every board though) and there will be every bit as much help here for her and your family as for you.
Lets see what we can do to help you okay?
What meds are you using? What have you tried? Has anything helped? What do you do to "cope" now?
There is so much help we can give, I'm just asking these questions so we can filter the most appropriate options to you.
How long do your hits last? How long is your cycle usually?
We'll get you there, don't you worry! You're here with people who understand every little thing you are going through and can empathise like no other.
As Bri says.. welcome home! :)
Helen

Title: Re: My first time
Post by alchemy on Apr 11^th, 2006, 5:10pm

Bigs you made it to the right place. first off sorry you're having such a rough time. believe me we all know what its like. keep coming back you're home now. give us some more info about what meds you take and the like. hang in there we're here to help jim

Title: Re: My first time
Post by Guiseppi on Apr 11^th, 2006, 5:18pm

You say you've used oxygen in the past and it helped. If it isn't working now it may be how you're using it. Read the oxygen link on the left. Most use the clustermax or a NON_rebreather mask, at 10-15 LPM flow. I use a demand regulator to make sure I get the 100% oxygen to stop the beast in his tracks.

That being said, you need to work with your doctor on a two pronged approach when you are on cycle..(getting the headaches)...You need a preventative, (I use lithium at 1200 mg a day, with a prednisone taper for the first week, takes that long for the lithium to start helping) then you need an abortive for the headaches that break thru. I use oxygen combined with oral cafergot. When I get blindsided by a really bad one I use the imitrex injectables, effective but expensive and prone to cause rebound headaches. Read, read and read some more on this board. There are oodles of treatment options to try that may offer you relief. No one should have to grit their teeth and tolerate these damned things, they hurt too much. Welcome to your second home, please let us know what does end up working for you, it's how we all learn.

Guiseppi

Title: Re: My first time
Post by marlinsfan on Apr 12^th, 2006, 7:25am

Welcome to the nuthouse Big. Jump in, the water is warm.

Hey, bring your wife over here too. There is a whole section for supporters, and it should help her get through this with you.

Here's a document we're all very familiar with. It has most of the treatments out there for our condition. Read it and bring it to your neuro.

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

PF wishes.

Title: Re: My first time
Post by Bigsouth1999 on Apr 13^th, 2006, 12:02pm

Sorry I haven't gotten back to ya before now. I had about 4 attacks the night before and wound up at the doctors office all day. Man, I'm sure it's gonna kill me before I get better! OK, Let's see, I've tried all the usual meds, ibuprofen, alieve, tylenol has never worked for me on any thing. Something thas has slightly helped is excedrin tension headache but it's mostly caffiene. The Doctor has put me on a beta blocker and something called zomax. The problem with it is that you can only take 10 mg per 24 hours. Their doing this until I can see a neaurologist.

I'm willing to try any thing.

Title: Re: My first time
Post by Bigsouth1999 on Apr 13^th, 2006, 1:16pm

Sorry, I misspelled that medication. It's called Zomig (Zolmitriptan). I take two when I feel the attack about to begin and it worked last night. But I was so zoned out I couldn't move. when I awoke this morning, the headache was in full swing but dulled. The problem I have with taking some of these other meds that are listed under treatments in the medical info, is that I have other medical problems. Diabetes, High blood pressure and Coronary Artery Disease. My Doctor is afraid of some of them. I'm only forty! I don't know what I've done to deserve this....

Title: Re: My first time
Post by nani on Apr 13^th, 2006, 1:29pm

Hi Big. Welcome. What did you do to deserve this? Nothing. None of us did. But, we've got it, so we move on. From personal experience, I can tell you that it's hard to fight if you're stuck on the pity pot. Now that you've found this place, take advantage of the decades of combined knowledge here. You have weapons at your disposal, but the most important one is your will to fight.
I can't take any of the triptan drugs (like Zomig and Imitrex) because of heart and BP issues. I use oxygen. Look over on the left for a link on proper set-up. Print it and show your dr. It's really the best choice for an abortive. Be sure to read up on kudzu, also. Keep asking questions, we're here to help.
pain free wishes, nani

Title: Re: My first time
Post by Bigsouth1999 on Apr 13^th, 2006, 2:24pm

Thanks nani, and your right! This morning during my attack I over heard my 5 year old daughter tell her mother that she misses her daddy. It broke my heart.

I have to beat this thing and I WILL!!! I intend to use every thing and every piece of information that this wed sight and other offer as my ammo. If my doctor doesn't listen, then I intend to make him listen and if I can't do that, then I will find one who will.

I really appreciate the responses. May God bless each and every one of you...

Title: Re: My first time
Post by BarbaraD on Apr 13^th, 2006, 3:53pm

Big,

I ditto the O2 -- get back with your doc and get a script for it or get to a welding supply and get your own supply. It works so well for others and won't hurt you if used right. See left on how to use it properly.... 10-15 liters per minute with non-rebreathable mask....

Watch out for the Excedrin - it works, but causes rebounds. Don't do it often..... Try black coffee instead. Red Bull works well also.

Try melatonin at night (9-12mg) about 45 minutes before you go to bed to help you sleep.

And hopefully get to a neuro as soon as possible.

Hugs BD

Title: Re: My first time
Post by Garys_Girl on Apr 13^th, 2006, 3:59pm

Because of your medical issues, I'm seconding Nani's suggestion to look into the Kudzu.

While it hasn't ended hubby's cycle, it sure has changed the nature of the cycle to something far more liveable with.

Include the Melatonin and magnesium (and perhaps consider including the calcium supplement too), and you may find yourself sleeping much better than you were.

Best wishes for pain free nights and days,

Laurie

Title: Re: My first time
Post by Bigsouth1999 on Apr 13^th, 2006, 4:10pm

Does Melatonin have to be prescibed by a doctor?

Title: Re: My first time
Post by Garys_Girl on Apr 13^th, 2006, 4:19pm

Nope. You may find it at a regular pharmacy in the supplements section, but we bought it along with the Kudzu Root (NOT KUZU STARTCH!!!!) at a health food store.

Dosage seems to be between 9mg and 12mg (Melatonin typically comes in pills of 3mg each or 5mg each) for clusterheads. Hubby takes 10mg each night about 20 minutes before what used to be our bedtime.

Some find that they feel groggy in the morning after Melatonin. Hubby hasn't experienced this. Just getting more sleep than he did. It helps a number of clusterheads get through REM sleep without an attack. BUT it does take a few days to work its way through your system, so give it some time to kick in.

For more: http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Melatonin

It also seems to help if you include magnesium supplements along with the Melatonin. Some take 400mg of magnesium in the morning, or one 200mg in the morning and one 200mg at night.

Title: Re: My first time
Post by aprilbee on Apr 13^th, 2006, 4:19pm

Welcome! ;;D

Title: Re: My first time
Post by Bigsouth1999 on Apr 13^th, 2006, 4:30pm

Thanks, I know where I'm going as soon as I get off work.

Thanks a bunch...

Title: Re: My first time
Post by GuitarBill on Apr 16^th, 2006, 4:54am

Just to let you know you are NEVER alone in this....
I found this site just a while ago, and the support is incredible. I ask you to please try as many doctors (as well as second opinions) as you can to help you...it took me 5 years to find the right doctor for me. You'll be able to find the right meds...it usually feels hopeless as we all know.
Finding different suggestions for relief on this site has helped me alot as well.
PLEASE keep us posted!!!

Title: Re: My first time
Post by Pickens on Apr 24^th, 2006, 1:57pm

Hello,

This is my first time on this website and I am just looking for information. My brother and I both suffer from cluster headaches. Him more so than me. I am looking for some help on some information that was given to me on him when he had a cat scan done. I am not 100% sure of the spelling. Cerebellum Tonsillar Ectopedia-a Chjari Malfunction Type 1. Does anybody know what this means and/or where I can get some information about it?

Thanks

Title: Re: My first time
Post by Guiseppi on Apr 24^th, 2006, 7:28pm

Hey Pickens...I have no idea what that is, start a new thread and ask that question, someone will be sure to help you!!!

Guiseppi

Title: Re: My first time
Post by Pickens on Apr 25^th, 2006, 3:25pm

Hello,

Well, I know this may come across dumb, but I have looked all over this page on where to start a new thread. It says in the help menu, to click on the start new thread in the index menu, but I can't find one. I guess I am just kind of frantic and not seeing it. They are talking surgery on my brother and I am desparately looking for information.

Thanks

Title: Re: My first time
Post by nani on Apr 25^th, 2006, 3:30pm

Pickens, go to the Cluster Headache Specific board. On the top right of the board itself is a link for start new topic Sorry, I haven't heard of it, either.

Title: Re: My first time
Post by Kris_in_SJ on Apr 25^th, 2006, 7:55pm

Welcome Bigs,

If your doc started you on a beta-blocker, that's good. I'm guessing something like Verapamil. If so, it takes about a week to kick in, and then needs to be given in fairly high doses (480mg/day for me). Don't worry about it - it will probably help your hypertension.

I'm all for the Oxygen as an abortive - no side effects - and usually quite effective when used the right way. Be sure to read up on it as suggested above.

Melatonin might very well help you. When in cycle, I take 9mg about 30 minutes before bed. It takes a few nights to really kick in, but has really been a life saver for me.

You might also want to ask your doc about a Prednisone taper. It can often kick the headaches away until the preventative (beta-blocker) starts to work. I'm not sure if it would be OK considering your medical problems, but it sure wouldn't hurt to ask.

Regardless of what you choose to try (or not), just know you have a home here. We're not docs, but we do our best to steer you in the right direction.

Hugs,

Kris