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        Cluster Headache Help and Support >> Cluster Headache Specific >> A Million Questions
        
(Message started by: SammyG on Apr 18^th, 2006, 8:17pm)

Title: A Million Questions
Post by SammyG on Apr 18^th, 2006, 8:17pm

Hey, incredibly depressing yet supportive clusterhead community! I am 21 years old and was diagnosed as one of you at the beginning of this month. Three weeks into the cycle, I can't even begin to imagine how some of you have coped with the hand God delt you.

I've tried imitrex (which diminished the headaches) and maxalt (about 10% better than imitrex) and now I'm on cafergot and oxygen, both of which seem to work a little worse each time. I've had one night of sleep that exceeded 4 and a half hours in these last three weeks.

How do I know that I'm not chronic and that this is all going to pass? What the hell am I going to do in a week when I have to stop taking cafergot? Am I the only one who can't eat or laugh or smile or exercise? My work doesn't understand what I'm suffering from -- you tell them you have cluster headaches a million times, and they hear "migranes" a million times. I'm afraid that I'll lose my job and I'll never stop having headaches and I'll never be happy again.

What you guys can do for me is answer these questions:
1. how do I know I'm just episodic?
2. 4 months? Are you serious?
3. Should I be looking for a short term solution or a long term solution at this point? Lithium or prednisone next?

-Sam

Title: Re: A Million Questions
Post by Sean_C on Apr 18^th, 2006, 8:29pm

1. how do I know I'm just episodic? It used to be 30 consecutive days pain free in one year, but I think they changed it, someone else will know the deal.

2. 4 months? Are you serious? Grab an oar, your gonna be here a while.

3. Should I be looking for a short term solution or a long term solution at this point? If you find one let me know ;;D.

4. Lithium or prednisone next? It depends if you prefer being shakey or chunky, both have potential. Maybe Verap and Lithium cocktail, but ask your doc first.

Read my boy, you got lots of research to catch up on.

Cheers [smiley=me&mb.gif]

Sean................. ;;D

Title: Re: A Million Questions
Post by Barry_T_Coles on Apr 18^th, 2006, 8:38pm

Hi Sam & welcome

What you guys can do for me is answer these questions:
1. how do I know I'm just episodic?
Is this your first time around or have you been hit before.

2. 4 months? Are you serious?
If it’s your first time and your only 3 weeks into the cycle and it is Clusters then you have a time to go yet I would think, for most anywhere between 8 – 13 weeks or more.

3. Should I be looking for a short term solution or a long term solution at this point? Lithium or prednisone next?
You should be finding out where you are at first; take a good read of the links to the left.

If it’s your first time you wont have any history to work on so it’s going to be a day to day exercise, give us some more info so that we can help better but remember we are not Doctors.

Kind Regards
Barry
Edited to note: I see Sean beat me by 11 seconds

Title: Re: A Million Questions
Post by Charlotte on Apr 18^th, 2006, 8:42pm

I don't use oxygen but do you have a non-rebreather mask?

What kind of job do you have? Do you have a chance to take down time and make up for it later? Are you the guy who always shows up, no matter what?

If this is your first cycle, it is too early to think about being chronic.

"Am I the only one who can't eat or laugh or smile or exercise?"

I can't smile either when I'm getting hit.

But you will smile again, and life will go on.

Hang in there.

Charlotte

Title: Re: A Million Questions
Post by E-Double on Apr 18^th, 2006, 9:08pm

Welcome to the nuthouse young dude!!!!

As far as knowing if you are chronic, when you reach 1 yr without having 30 consecutive pain free days the you have reached what the IHS has determined to be the criteria.

Meds: Is the imitrex you use a pill or the injection?

Oxygen: you must have the proper set up!!!!

Read on

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!!!

If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

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

If you do have the "typical" wake you 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. (Maybe I should start folowing my own advice again hahahaha!)

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

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

Eric

Title: Re: A Million Questions
Post by BarbaraD on Apr 19^th, 2006, 5:08am

Sammy,

First cycle can be a scarry event. At least you got diagnosed - more than a lot of us do. Took me a little longer and a lot of scared nights thinking I had a brain tumor before I got the word that it was "only" CH.

Melatonin for sleep is great (if you stick with it) I take 12 mg at night and get the rest I need to get thru the days.

Black coffee or Red Bull at the onset of CH usually aborts anything under a Kip 5 without drugs.

Over a Kip 8, I hit the cafergot (hate the stuff, but hate the pain worse).

Depression is normal, but then we get up, brush ourselves off and get back in the race. I've been chronic since 97 and have been thru all the steps toward recovery (and yes it's kinda like AA - ya gotta go thru all the steps).

Episodic - you know it's gonna end in a couple of months and you'll be ok until the next one. That's something to look forward to.

Go over to the left side of this screen and read everything you can on CH. It'll answer a lot of your questions.

The best thing you can do is find a doc who knows (or can learn) about CH and can work with you to find YOUR formula (and we're all different so you have to find what's RIGHT for YOU). We can only tell you what's worked for us. Most of us have tried dozens of different things (some have tried hundreds).

Remember - with CH - you do what you gotta do and learn to live with them. WE RULE -- CH don't!!!!

Hugs BD

Title: Re: A Million Questions
Post by Bob_Johnson on Apr 19^th, 2006, 7:27am

Time to start learning.....

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: A Million Questions
Post by marlinsfan on Apr 19^th, 2006, 8:13am

Good advice so far, so I won't be repeating it. I'll just add that you also need to watch what you eat. As you learn to live with this condition, you'll find certain foods/drinks that will trigger a headache while you're in cycle. For me, alcohol, nuts, chocolate, anything citric, aspartame are just a few. While not in cycle, I can eat and drink all I want.

Also, for me I cannot exercise while in cycle, but others here use exercise to abort an attack. The beast treats us all differently.

As Sean_C said, grab an oar. What we have is un-curable at this stage. I've only been dealing with this for almost 24 years, so I got a ways to go.....

Keep your chin up. Welcome home.

Title: Re: A Million Questions
Post by FramCire on Apr 19^th, 2006, 10:13am

I'm going to repeat a lot of what has been said, but here goes.

Good news:

1. According to my dr, the average episode/cycle for an episodic CHer is 8-12 weeks. Why is that good news? It means 3 weeks shouldn't be a worry about chronic. Wait until you hit 6 months or so before you think about chronic. My first cycle was weeks.

2. The time between cycles can be very long. Use this to remind you that things will be better. Even in episodic CHers, you can go year(s) between cycles.

3. O2 with a NON-REBREATHER (must be the right mask!!!) can help.

4. Read E-Double's links (especially the first one). I went to 9 mg of melatonin and after a couple of WORSE days have had great success (along with verapomil).

5. Look for a headache clinic or specialist in your area and get a refferal.

6. Never mix triptans within 24 hours, but get sample whenever you can.

7. I read in 1 article that some Chers have had only 1 cycle and never had another. I personally don't know any people like that, but I did read that.

8. You have a lot of support and resources right here. Use it!

Bad News:

1. According to my dr, the average episode/cycle for an episodic CHer is 8-12 weeks. Why is that bad news? It can be very scary thinking you might go through this for that long (or longer). However, find the medicines that work for you and the time wont be so tough.

2. There is no medicine or mix of them that works for all of us (or even a majority). You might need to try a bunch to see what works. Personally, I'd stay away from Topomax because it messed with my mind, but that is just me.

Again, read the 1st link by E-Double and print it out. It has med choices spelled out for your primary care doc if he/she doesn't know much about CH.

As for work http://www.ouch-us.org/chinfo1.htm has a few options. The letter to employers is 1 and the Collegues letter is another. I printed out the collegues letter and show it to friends and family so they can understand.

Good luck. Keep asking questions and welcome aboard.

Title: Re: A Million Questions
Post by Richr8 on Apr 19^th, 2006, 10:49am

I've read through all the replies and all that I can see to add is my welcome to you for finding us, and condolences because you had to.

You will have to make your own choices regarding your approach to dealing with this. My first line abortive is Oxygen with a clustermask and I have had relief with Verapamil and Prednisone tapers (very nasty), however, I am considering some of the alternative approaches addressed on this site for my next session. As mentioned above, Simon's letter was a huge help for me in dealing woth work and my co-workers. Some people actually now get it. If that doesn't, there is a visdo at:
http://www.clusterbusters.com
that tells the story real well.

Best regards,

Title: Re: A Million Questions
Post by NotH20 on Apr 19^th, 2006, 12:04pm

Sammy,

Sounds like everyone is giving you great advice.....the only thing I would add is to keep a headache journal - especially if this is your first cycle. Since you have nothing to compare this cycle with, it will come in handy in the future. Sorry you have to be here, but welcome.....

Mia

Title: Re: A Million Questions
Post by Linda_Howell on Apr 19^th, 2006, 1:50pm

Sam,

I can't add anything to what has already been said but this, and I think it's important:

Your first sentance is wrong. After you've read all the info here and gotten to know all of us....you will find there is nothing depressing about this community. Depressing is being alone in the fight. You are not alone here.

Linda

Title: Re: A Million Questions
Post by AfraidOfTheDark on Apr 19^th, 2006, 2:04pm

I realized I was episodic when my clusters would come back around the same time every year. At first it was around October, and now it has switched to the first couple of weeks in March.

Even though I've had yearly cycles since 1999, this cycle is the first one I've become intimate with. I'm not sure why Prednisone is looked down on, but I do know that every year I would get a Prednisone taper, and it would immediately kill my cycle. Upon the first dose, I would not get any more attacks.

This time, I did a Pred taper (never any attacks while on the taper) but the CH came back a couple days later. Same thing happened with the second taper. Can't do another round for this cycle so I just started new meds yesterday, we'll see how it goes. I'd be interested to know why most seem to avoid Prednisone? The only side effects I noticed was briefly diminished hearing (which sucked b/c I'm already hard of hearing) and upper body soreness when weaning.

Welcome to the group. They are an awesome bunch for helping you get through this thing without feeling so lost and alone. :)

Title: Re: A Million Questions
Post by unsolved1 on Apr 19^th, 2006, 2:59pm

I think you've gotten some good advice so far. If you have more questions, ask away !

I just wanted to say goodluck!

PS. If it doesn't stop within a year, then ask us if you are chronic. ;;D

UNsolved

Title: Re: A Million Questions
Post by Steve_Gn on Apr 19^th, 2006, 6:45pm

Hate to say it, but Welcome to our world.

For me it's 12 to 15 weeks 2 times a year, for about 24 years.

Pull up a chair and get comfy, Its a long ride.