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        Cluster Headache Help and Support >> Cluster Headache Specific >> Cycle times
        
(Message started by: Tom_Thumb on Sep 10^th, 2007, 12:20pm)

Title: Cycle times
Post by Tom_Thumb on Sep 10^th, 2007, 12:20pm

I am in a cycle that I can not seem to break.I have been trying everthing . I am going on week 9 . My cycle has never lasted this long . I would win in about 4 to 5 weeks . I was just wondering HOW LONG DOES EVERYONE ESLE LAST. I know that we all are fighting a I will win battle But how long can it last .For me I have had ch since 1984 an I do get a 2 to 3 year break .But at 45 it is killing me . I am missing work . The pain is worse than ever . I just want it to go away .HOW LONG WILL IT TAKE ?

Title: Re: Cycle times
Post by DennisM1045 on Sep 10^th, 2007, 12:46pm

Hi Tom,

Sorry to hear you're getting slamed. Unfortunately there is no answer to your question. Only the beast knows for sure.

I don't see a recent update on your abortives or preventatives. Can you list what you're doing now? I know this won't kill your current cycle but maybe you can make it more bearable.

I see from '05 you used neurontin and verapamil. Are you taking them again for this cycle? Do you still have Imitrex and O2?

-Dennis-

Title: Re: Cycle times
Post by Tom_Thumb on Sep 10^th, 2007, 1:18pm

I guess I should have listed my progress. I am on 480 mg verapamil , 900 mg neurontin , 75mg indomethacin , I have 02 , trex. I have done the prestone taper . I have had a 400mg testosterone injection . I have been through 18 of the big tanks of 02 . Waiting on two more to be here today . I have done the red bull . I think I have tried it all . But with no break it is hard to keep fighting.

Title: Re: Cycle times
Post by DennisM1045 on Sep 10^th, 2007, 1:38pm

It looks like you have gone through a lot of the usual suspects.

Some folks are resorting to a DHE drip. It's an in-patient, week long procedure but seems to be buying some serious PF time for some. Google should reveal a lot of threads on the subject. It doesn't work for everyone but it may be worth a shot.

Batch is working up a new O2 therapy involving use of a demand valve regulator. This drives much more O2 into your system much faster. 30-60lpm. The valves are like $200.00 though and you look like Darth Vader wearing one - but who cares ;;D He's supposed to update the O2 guide with results from his testing. I'm waiting till then to take it up with my Neuro/insurance.

Have Trex injections stopped working for you?

How are you tollerating the Verapamil at 480mg? Can you work with your Dr to gradually up that a bit? This isn't a short term answer either.

Shame about the Neurontin. IMO If it's not preventing your cycle it's not doing you any good. Sounds like it's time to find another prevent. Got Lithium? Guseppi and others have had lots of luck with it. Neurontin didn't work for me so this is likely to be my next prevent.

That's all I have. I hope it helps and that you get a break soon bro. Sounds like you could use one.

-Dennis-

Title: Re: Cycle times
Post by clusterwife on Sep 10^th, 2007, 10:16pm

One that worked well for kevin was cafergot, and lithium too. He gets the headaches daily, usually at either 4:00am or 4:00pm, just like clockwork. Leah.

Title: Re: Cycle times
Post by Jobette on Sep 10^th, 2007, 10:52pm

You sound just like me a week ago. My doctor tells me not to speak of my headaches as though they were alive, but to me they are. She upped me Verapimil and Neurotin and added Lithium, plus I take Imitrex and O2. As you know, it takes time for the meds to take affect, but you have the O2 so use it. Did you do a Predizoned tamper, because they help me. :-[ These headaches don't care that you are a 42 year old man with a job, because I am a 42 year old woman with a job and family and I am still getting slammed. :-* My neck it so tight from all of these hits that I have been getting. We DO know that it will pass, but we just don't know when. [smiley=huh.gif]

Title: Re: Cycle times
Post by UN solved on Sep 10^th, 2007, 11:08pm

When you start feeling 'beat up' ... ask your doc for a 'break'. A Prednisone taper or Medrol Dose Pak, or a 3-4 day inpatient DHE IV drip may be very helpful.

BTW, you asked ..."how long can it last ??" ... You don't really want to know. :-X

Goodluck

UNsolved

Title: Re: Cycle times
Post by sandie99 on Sep 11^th, 2007, 3:02am

Tom,

I wish I could tell you how long it will last. Some have hits for 6-12 weeks twice a year, some have it every day for 30 years... The beast likes to change things, unfourtainly. You need to keep your mind optimistic, there are things to try.

Simple things: does ice help when you get hit? How about hot shower? Coffee?

Pf wishes,
Sanna

Title: Re: Cycle times
Post by BarbaraD on Sep 11^th, 2007, 6:57am

I did trex for a long time then switched to cafergot (ergotomine) for a prevent. It works better for me and lasts longer between hits.

My first line of defense is O2 (after the Red Bull and coffee - sometimes with the O2). If I get over a 6-8 and see it's not going away - I hit the cafergot.

For prevents I take topamax (at night - not like the directions say - don't have the side effects if taken at night). Topamax has not worked for a lot of people here but has been my miracle drug. And I've taken everything! (I'm chronic).

Lengths of cycles are up to Mr. Demon - and he plays games with us. And don't worry about talking about him like he's real - to US he is. Let the doc live with him a while! Only another CHer would understand.

Hugs BD

Title: Re: Cycle times
Post by Tom_Thumb on Sep 11^th, 2007, 8:50am

Thanks guys for all the input. I am on the way to see the doctor again this morning . My work has got to see what is really like so the nurse at work gave me a form to get the doctor to take me out for awhile . I hope he will because I am just not able to do my jop very well at this time . Iam getting hit about every three hours . around 8 to 10 kip . I should not say this but death could not be that bad as I fill with every hit I am going to die . THAT IS BAD BAD THE PAIN IS . I will win somehow for I have three kids at home and a loving lady that is by my side . We all need each other and they all are worried about me . I have to hide between the bedroom and bathroom to keep from the kids seeing how bad it is . They are 16 ,13, 7 and I also have a 22 yearold as well . I would also like to say that for all of use that are going through this horrible time I am saying many prayers because god is our support. I wish all of you pain free days .

Title: Re: Cycle times
Post by DennisM1045 on Sep 11^th, 2007, 9:24am

Good luck with the Dr Tom. I hope he gives you some answers. Take care...

-Dennis-

Title: Re: Cycle times
Post by michael on Sep 11^th, 2007, 9:47am

Hi Tom

I've had this 40 years and most of my cycles have been 6 to 8 weeks. However, I have had a few odd-balls that have lasted 6 months.

Mike

Title: Re: Cycle times
Post by Bob P on Sep 11^th, 2007, 9:48am

Hey Tom,
From the age of 20 until 40 y/o my cycle would last 4-6 weeks with 9-10 break. At 40 the break increased to 2 years but the cycle went haywire. The break keeps getting longer but so do the cycles. Last break = 3 yr. 3 mo. Last cycle = 5 months.

Title: Re: Cycle times
Post by Tom_Thumb on Sep 11^th, 2007, 10:08am

Back from the doctor .I am out of work now for 30 days . I hope that the end will come soon .I would rather work 12 hrs day 7 days a week .I guess you all know that for sure . Thank god for my doc he is so great .Gave me more imitrex injection . I am going to try another neurontin 300mg a day for a few days to see if it will help . I have another appt. in 10 days so that we will do something different if no releif . Doc seems to think that I may need to reduce the other meds before I try some other type. I may have to agree we that to much could be just as bad I think . Thanks again for all the support . PEOPLE DO MAKE A DIFFERENCE LOVE YOU GUYS