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        Cluster Headache Help and Support >> Cluster Headache Specific >> Its gone - but im still worried
        
(Message started by: chopmyheadoff on Jul 31^st, 2006, 3:07am)

Title: Its gone - but im still worried
Post by chopmyheadoff on Jul 31^st, 2006, 3:07am

Hi peeps.
I have been chronic and undiagnosed for the past 7 years until about a month ago, when i found verapamil and imigran !! ;;D :)

the thing is .. i havent had a headache since that marvallous day.

now you think i should be singing and dancing with glee but for some reason im not.

For the last 7 years these headaches have been a dominating part of my life, i think they have even shaped the way my personallity has developed because of the way they have controlled everything i do.

so, now that they are gone, i feel like a part of me is missing. i cant describe it. it doesnt feel right. and now i feel like i am waiting for something bad to happen and its got me really up tight.

can anyone offer me guidance please.
Obviously i know im very lucky to be pain free now and i dont want to offend anyone but this really has effected me in a strange way :(

love chop

Title: Re: Its gone - but im still worried
Post by georgej on Jul 31^st, 2006, 3:27am

on 07/31/06 at 03:07:50, chopmyheadoff wrote:

No offense taken, Chop.

Welcome to how it feels to be episodic. And congratulations. Really. There's a larger life out there.

Now you'll wait for the other shoe to drop....
:P ;)

Best wishes for continued PF times....

George

Title: Re: Its gone - but im still worried
Post by TxBasslady on Jul 31^st, 2006, 3:44am

CH will control your very existence. It destroys lives and relationships.

I'm episodic....but my CH is random....I have no cycle.
I'm susceptible to a hit at any time. Now, I can only handle one hit at a time.....therefore, I don't dwell on when the next hit may come.

You need to try to enjoy the painfree time....try not to think about the next hit or when it's gonna happen.

Try not to worry about things you can't change. Accept the painfree time....and try to go on with your life.

Don't let the beast win.... :-*

Jean

Title: Re: Its gone - but im still worried
Post by chopmyheadoff on Jul 31^st, 2006, 3:58am

so you guys think the verapamil will not work forever ?
:'(

before this iv never gone a couple of days without a kip 10 ?

i feel like im looking over my shoulder or that im dreaming and im going to wake up.

its a strange feeling

Title: Re: Its gone - but im still worried
Post by LeLimey on Jul 31^st, 2006, 5:10am

Dear love chop,
Did you mean to write that?! LMAO
Seriously, you shouldn't be on verap forever and if you aren't getting hits you should try lowering the dose. The general rule of thumb is two weeks without a HA is worth trying dropping a pill a day. If that has no ill effect then leave it three days and drop another.. and so on until you are off Verap. There is no need to take it if our cycle has finished.
If you drop a pill and the ha's come back then increase by one again from where ever you are in the "detox".. wait for another 14 days PF and try again.
You'll get there! You'll know if you are out of cycle or not this way too!
Hope it helps
Helen

Title: Re: Its gone - but im still worried
Post by Bob_Johnson on Jul 31^st, 2006, 7:06am

When we read someone writing about their dread of CH or the anxiety of waiting for the next attack, we are seeing the emotional effects of CH. These reactions are not fixed even by good medical treatment of the Clusters.

This is the first few paragraphs from a longer article: You can find the entire piece on the OUCH site or I'll e-mail it to you if you will leave your address (using the instant message button.) (The whole thing is too large to be posted here.) The approach outlined to reduce suffering is developed from cognitive therapy, a well researched therapy used by mental health types. But don't ask for it unless you accept that it takes practice and commitment to make it work! There is no Imitrex injection for this problem.

------------------------------------------------------------------------ ----------------------------------------
AT THE HEART OF THESE PARAGRAPHS is the recognition that pain and suffering are rather different experiences which can and must be changed by rather different responses. The pain of our CH is the subject of many of the messages we exchange, the topic fills the medical literature we read, and is the primary purpose for the multiple visits to doctors.

Suffering is quite a different animal. It is an emotional/psychological condition which is often experienced even when there is no pain; it is commonly experienced as fear, anxiety, depression, hopelessness, dread, and fearful anticipation.

Suffering is a normal, even automatic, response to pain, loss (as in death, divorce, or other major losses), and a host of other difficult experiences. However, suffering can be intensified, sustained, and even created quite independently of any of these experiences. In the case of our CH, suffering is too often experienced when we are not having attacks.

The hard paradox is: WE CAN SUFFER EVEN WHEN WE ARE NOT IN PAIN! This is the paradox which we need to resolve if CH is not to be the controlling experience in life.
------------------------------------------------------------------------

Title: Re: Its gone - but im still worried
Post by starlight on Jul 31^st, 2006, 10:39am

Congratulations on getting much-needed relief!
I cannot imagine how it feels to be chronic. For MANY years I would cycle once a year beginning on the exact same day--I was also untreated and in much pain/distress. That hardly compares to being chronic--however it did change my personality--the experience--headaches that went untreated for well over a decade carry a dose of discouragement that changes the personality. But then my headaches started skipping two years in between cycles. I stopped feeling the anxiety I used to feel in between cycles cause I felt hope that things could at least get better. Things can and do get better. I think what doesn't kill us in some way makes us wiser (as well as stronger) but that realization comes when the anxiety is not so strong. Wishes you much success! Starlight

Title: Hi!
Post by starlight on Jul 31^st, 2006, 10:52am

PS. This is just my own way of dealing with the beast. In between cycles I live with the assumption that I will never get them again. Really--I assume (against previous evidence) that they are never coming back. After living in fear for so many years I refuse to give the beast the indulgence of being included in my life in between cycles. I guess it is old-fashioned denial (as I am in cycle right now) but it sure makes me feel better...

Title: Re: Its gone - but im still worried
Post by jenrob2006 on Jul 31^st, 2006, 11:27am

I know exactly how you feel. Sometimes, when I am pf, I feel if I turn my head the wrong way I will bring them back. It is like living in constant fear. But I gotta tell ya, the fear is better than the pain, and after awhile, the fear deminishes a little. It is never gone, but it subsides a bit.

Title: Re: Its gone - but im still worried
Post by mr.c on Jul 31^st, 2006, 12:19pm

Congrats on the remission.

Remember, you are a person first... being a clusterhead is only part of who you are.

Worrying, panic and such are normal. Enjoy the time off and work on other aspects or who you are.

I learned long ago to take advantage of the down time, even when in a cycle.

Have fun! [smiley=spit.gif]

Title: Re: Its gone - but im still worried
Post by kevinpix on Jul 31^st, 2006, 6:33pm

It sounds like "survivors guilt" ! That you are out of pain, your brain seems abnormal, but in reality, it's normal. Had those same feelings too, took a while to go away, but it did eventually. Enjoy yourself in the meantime. Stay away from beer! Hate to see you get a hit. Not worth it. Go run around the block really fast. then go inside, open the freezer door, now that's a rush! And, no hangover! Now, if I could get THAT in pill form, I'd be elated!! Have a good one!

Title: Re: Its gone - but im still worried
Post by Sandy_C on Jul 31^st, 2006, 7:23pm

Best advice I can give is enjoy your PF time. Live your life - do what you want to do - enjoy your family, loved ones, friends - party on. Do not, repeat DO NOT, dwell on whether you will or will not get hit again. Because with CH, chances are that you will get hit again. If and when you do, deal with it, and enjoy the PF time in between the hits. If you spend all your PF time waiting for something bad to happen, you will be rewarded, because something bad WILL happen. With CH, it's going to happen anyway, so why waste that wonderful pain free time worrying about it.

I first began this journey of CH 7 years ago. Being episodic, I'm one of the lucky ones, because I enjoy PF time between cycles, unlike chronics, who only enjoy PF time between hits. Learn to treasure whatever PF time you are given, because it is indeed a gift. If you spend your PF time worrying about the next hit, the next cycle, when will it come - you aren't living, you aren't able to enjoy the sunrise, sunset, flowers, birds, breezes, snow, anything, let alone the ones who love you most.

Make the most of your PF time, and what will be, will be.

Sandy

Title: Re: Its gone - but im still worried
Post by Ladybug314 on Jul 31^st, 2006, 7:36pm

Hey,

Looks like you and me are in the same boat~~~~
I started Verapmil and Imitrex Friday<----Dam Insurance only gave me 9 tablets a month. And I work for the big Hospital. First day of no h/a today 7/31 since (7/11 was the first whopper of ch), although I did have insomnia last night.. Im taking verapamil-3 tablets a day and imitrex PRN no more than 2 tablets per instructions, and all the pain med anyone could ask for (But it doesnt help). I am afraid :o :-[... But reading the other post, I cant let it take control.. I have to be in control... I want to but it will be there. I DID go to a Neurologist. about 7 years younger than me (Im 41) and I told her I rather give birth without any anesthesia( I have 6 boys). Her responds was I dont know what it is like to give birth I dont have kids..Thanks Neuro MD.. Im going back to my Internal Medicine MD to continue with tx.
PF-----> One DAY At A TIME....
Ida

Title: Re: Its gone - but im still worried
Post by Charlotte on Aug 1^st, 2006, 3:28pm

Dear chop, after a really bad round in a high cycle, I often feel like I have just moved to a new neighborhood & started a new job. I add things back into my life, as if it were a new discovery, and it takes a little while to get comfy, but it's great.

Ida, I'm sorry things are not going smoother. Hang in there. The 9 Imitrex is the pits. They take too long to get into your system. Do you have the option of generic maxalt melt? At least they allow 18 of those a month, and I cut mine into 4ths. Not great but OK.

I have a neuro appointment Friday. I think it is because I asked for more maxalt melt than 18, so the Dr is sending me to the neuro to see if there have been any new developments. All he would have to do is read the stuff Kaiser has on it's own network to see what to prescribe next but he is sending me to the neuro. The last neuro was very disappointing. He tapped my leg, had me walk in a straight line, and prescribed depacote - and said a gp could do it. Reading the 4 pages I requested so I could take with me to this one, it sounds exactly like the same problem I now have - same concern of frequency, however, I was "delighted" with how the 9 Imitrex and depacote were working even though at that time I had 3 to 12 ch a day, multiple migraines, and had had 3 bad days the week of the follow-up. The depacote helped at the low cycle, but when I hit the high cycle and got hit back to back it did not help. The Dr I was seeing had me have a blood test because I said it wasn't working, and I was informed I had the right amount in my blood - not too little and not too much. However, it still wasn't working for me so I discontinued.

I had a reputation with the drs I was seeing for "using too much" and "not using enough", both.

I have gotten over my dread of seeing the neuro. He can't hurt me. He might help me. At the very worst, all I will lose is time.

Charlotte