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        Cluster Headache Help and Support >> Cluster Headache Specific >> How long is your longest cycle ?
        
(Message started by: BB on Oct 2^nd, 2006, 2:06am)

Title: How long is your longest cycle ?
Post by BB on Oct 2^nd, 2006, 2:06am

Hello everyone,

I believe that everyones cycle is different and even for the same person each cycle is different.

What is your longest cycle and is there any difference in how the hits are in the longer cycles compared to the shorter ones?

Thanks for your input.

Painfree wishes and hugs to all.

Annette

Title: Re: How is your your longest cycle
Post by georgej on Oct 2^nd, 2006, 2:18am

Hi Annette,

As you know, I'm episodic. I used to cycle twice a year, spring and fall. Now that I'm older, my last three cycles have been three years apart.

The intensity and length of an individual cycle has not changed, however. They still last 6 to 8 weeks. I don't get hit as often within a cycle as most people--once a day or every couple of days, unless I make the foolish mistake of drinking alcohol--but an individual hit typically lasts two or more hours.

I think the longest cycle I've had lasted only about two and a half months. I haven't noticed any significant difference in the character of hits in longer or shorter cycles.

Best wishes,

George

Title: Re: How is your your longest cycle
Post by BB on Oct 2^nd, 2006, 2:39am

Thanks George for your input.

Its interesting that your cycles are getting further apart.

I read somewhere that CH stopped around 70 years of age or sometimes around that.

I wonder if its because the older persons blood vessels tend to be more hardened with fibrous tissues and/or cholesterol plagues that they no longer stretch/swell as much as when you are younger.

On the other board, I also read that a CH girl had a MRI scan during a hit and they found a swollen blood vessel which was big enough for them to initially thought that it could be a tumour of some sort.

So following this line, I am thinking that if somehow one can "harden" the blood vessels to stop them from swelling up during an attack so that it can not compress the trigeminal nerve then one basically can "cure" CH ?????

Currently in cardiology, doctors can insert a stent into a blood vessel in the heart to stop it from changing in size, I wonder if one can put a similar stent into the brain blood vessels that may work just as well.

At least one may achieve painless CH ?

What do you think people?

Annette

Title: Re: How is your your longest cycle
Post by TxBasslady on Oct 2^nd, 2006, 4:03am

I'm episodic, but I don't have a cycle.

My hits are random. I may have 1 hit in 10 days or so, then I'll go 2 or 3 weeks with nothing. There have been times when I got hit 4-5 days straight...then go a while with nothing. Hope this makes sense.. [smiley=huh.gif]

My hits are relatively mild, maybe Kip 2 to 4. They also are short lived. I use nothing but 02, and within a couple minutes, the CH is gone.

I took Kudzu for 9 months...tapered off Dec 29th. It really changed my CH...for the better, and I'm still reaping the benefits.

Jean

Title: Re: How long is your longest cycle ?
Post by BB on Oct 2^nd, 2006, 4:07am

Thanks Jean for your reply. :-*

Its interesting that a cycle can be totally random also.

Is there any difference between the hits or are they all the same ?

Painfree wishes to you , hope you wont get the next one for a loooooooong time.

Annette

Title: Re: How long is your longest cycle ?
Post by AussieBrian on Oct 2^nd, 2006, 8:03am

Can't help a lot on this one as I've never had two cycles even remotely similar. Currently PF after 18 months on the trot but was fully three (perhaps four) individual cycles back to back.

Title: Re: How long is your longest cycle ?
Post by BB on Oct 2^nd, 2006, 8:50am

Hi Brian

Good to see you back ! :)

The scared little girl you extended a helping hand to 2 months ago has since found a family and is standing steadily on her own two feet, strong enough for her DH and her friends to lean on. :)

Thank you.

Hugs.

Annette

Title: Re: How long is your longest cycle ?
Post by Chonas on Oct 2^nd, 2006, 9:14am

Annette, the longest cycle I've had lasted 5 months.

Title: Re: How long is your longest cycle ?
Post by LeLimey on Oct 2^nd, 2006, 9:28am

Hi Annette
I've been chronic since day one (although I didn't know that until day 365 of course!) However within that I do have cycles, or high periods. Every five to six weeks I'll have a bad week where I'll get double or more my usual amount of hits and they are much harder to abort. I usually get 3 per day but this increases to up to about 8 for a week to ten days.
I'm currently using the RC seeds and I generally get 10-14 days PF time but I've noticed every time it comes back it coincides with the same "pattern" I had before.

Jasper, my son, has a cycle that lasts about six months. His first went from Dec to May, his second went from Nov to April and so far he had two hits in Sept but nothing since so I'm waiting on tenterhooks to see what happens as he SEEMS to go 5/6 months pain free each time. Its hard to tell based on him just coming into his 3rd cycle though.
I hope it helps
Helen

Title: Re: How long is your longest cycle ?
Post by Margi on Oct 2^nd, 2006, 10:09am

Hi Annette - keep up the great research questions!

In his 20's, Mike cycled twice a year, 6 - 8 weeks each time. In his 30's, yearly, cycle lasting 8 - 10 weeks. It was during this time that he first tried Imitrex pills but they didn't do much for them, so he remained med-free (and undiagnosed) until we found this site in 1998. At that point, he tried (welder's) oxygen for the first time, it was a Godsend for him. He also tried Doc Jerry's water treatment and actually aborted a cycle with it.

At about age 45, he tried psilocybin and he did get his first 2.5 year remission, doing maintenance doses during that period. Then, a cycle hit him that psilocybin wouldn't end for him. After dosing 4 times over a five week period, he finally went to a neuro who put him on pred, verap and lithium. That cycle lasted 5 months and he became "silent chronic" at that point (which is now about 4 years ago) - in that he gets "cluster eyes" at 4:30 every day for 45 minutes, no pain, but definitely something neurological going on.

1 year remission after that, then November 21 commenced a 6 month cycle, again medicating with Imitrex, oxygen, and verapamil.

Again, a cycle started on November 21 and this time we tried the lithium pulsing method which gave him a virtually pain free 4 months, but he could tell he was still in cycle because of the regularity of shadows - I guess the lithium pulsing did keep it at bay. Oxygen was enough to blow away the shadows. Then, the beast switched sides on him and he went another 5 months in deep cycle, for his longest ever total of 9 months. The lithium stopped worked, so he once again introduced imitrex and, at the 8 month mark, verapamil. This was last year, cycle ending in August. Lithium left some nasty residual effects and it took him almost 3 months to regulate after tapering off it.

We're awaiting the fateful November 21 date now and I do see some increase "silent" activity, so he probably will hold true to form. We will be trying the seeds to see if we can ward it off this year - but no other meds (except for O2 delivered via Clustermasx). Perhaps Zomig spray if the seeds don't work, but never again Imitrex.

As to difference in attacks, when he uses imitrex, the hits definitely come more frequently and more intense. We've given all of our imitrex away. We were out camping last summer without oxygen and Mike had 10 attacks in 24 hours, it was brutal. :( We had to come home so he could get off the damned imitrex and back onto the O2.

in summary? Meds have definitely prolonged cycles for him and age has prolonged remissions.

That's an interesting theory you have about the arteries hardening up and the resulting slowing of vasodilation, makes a lot of sense! So, are you saying I should start feeding him nothing but fatty foods, and encourage him to smoke and drink more? ;)

Title: Re: How long is your longest cycle ?
Post by Charlotte on Oct 2^nd, 2006, 10:30am

I'm not sure, but I had 4 days off in March 2006 (after exactly every 2 hours) and 4 days off November 2005 (after every 3 hours). These were not pf days, but pf from what I thought was cluster. Apparently it morphed. Now is somewhat irregular, but close together. Am doing well at the moment.

Count down to follow up w/neuro on Thursday. Wonder what he will say, this time.

Charlotte

Title: Re: How long is your longest cycle ?
Post by BB on Oct 2^nd, 2006, 10:40am

Chonas,

Thanks for your reply. Hope the cycle wont ever be that long again ! PF wishes to you :-*

Helen,

Thanks for your information. :)

Its amazing that RC seeds could give you PF days yet the hits would still come through around the same time as expected. That circadian clock in the hypothalamus must be really powerful! If somehow we could just take its battery off or reset the whole thing.

Its also amazing and sad that Jasper has CH at such a young age. However he has the best mom in the world to help him through though. Please give him a hug and a cuddle for me :-*, thanks.

Have you ever thought about doing a DNA mapping to see if they can find any genetic pattern that is unique to you and Jasper to see if a gene for CH can be identified? ( Just wondering out loud here to myself ).

Margi,

That is an impressive description of your DH's CH history. Only dedicated supporters like yourself would know it like that! Hat off to you. :-*

Regarding the possible diet plan, I guess if I walk around promoting it I would first get very rich as many people would have loved me for it ::) but then I would get sued off my pants once they start to drop dead of heart diseases and strokes before their CH gets better :P ! LOL !

I would rather root for something like a stent as in cardiology, much safer although less enjoyable! :)

Thanks everyone .

Annette

Title: Re: How long is your longest cycle ?
Post by rbmb on Oct 2^nd, 2006, 12:01pm

My cycles used to last 6 to 8 weeks and the periods in between were something like 3 or 4 months. The last cycle I had lasted almost 6 months, but the PF period was about 8 months(for a while there, I thought maybe they had gone away, but no). I'm in a cycle now that started about about 5 weeks ago.....who knows how long it will last.
Rich

Title: Re: How long is your longest cycle ?
Post by roy21302 on Oct 2^nd, 2006, 12:21pm

Annette,
I started Ch about 30 years ago, for first 15 years I was episodic, used to get hit 2 -3 times a years. Then went Chronic, and since then I have had only short periods of time painfree, never more than a couple of weeks. Then it builds up again 1 or 2, then 3 or 4 a week, then it becomes per day and so on. Thats how the cycle runs. Cheers Roy

Title: Re: How long is your longest cycle ?
Post by LeLimey on Oct 2^nd, 2006, 12:43pm

on 10/02/06 at 10:40:19, BB wrote:

Have you ever thought about doing a DNA mapping to see if they can find any genetic pattern that is unique to you and Jasper to see if a gene for CH can be identified? ( Just wondering out loud here to myself ).

Annette there is a study into CH genetics going on here in the UK at Leicester university under a Professor Trembath. Jasper and I have both given blood samples for it. If you are interested I can give you all his details if you'd like to contact him at all?
Helen

Title: Re: How long is your longest cycle ?
Post by maffumatt on Oct 2^nd, 2006, 12:45pm

10 months

Title: Re: How long is your longest cycle ?
Post by LadyC on Oct 2^nd, 2006, 1:16pm

Hi Annette,
When my clusters started 25 years ago I was chronic for 5 years. After that I would get one cycle every 12-18 months that would last for about 8-12 weeks. The longest remission I've had is 6 years. That ended in February and I am hopefully (1 week pain free so far) just ending a 30 week cycle. Here's hoping for another 6 year remission!!
Carol

Title: Re: How long is your longest cycle ?
Post by MJ on Oct 3^rd, 2006, 1:51am

I have had CH for 31 years now. I'm still a youngun.

For the first 10 years every 13 months they would start. This was measured in the times between starts not end of one to beginning of new cycle. In other words if a cycle started in september and lasted 5 months the next one would still begin in october 13 months later.

The next 20 years have been a different story. Random. They have started whenever they thought they could try and whup me again. They have come close.

My cycles tend to vary in length alone.

They never vary much in the frequency or duration of hits, 8-12 hits per 24 hrs with a duration usually 1.5 hrs but can be 1-2 hrs. The 2 hr ones makes it a 24 hr cluster. Lots of fun when they hit back to back.
The intensity of the hits also never varies allways at the upper end of the scales.

My cycles do not fade away they just quit and dissapeared in the past.

My longest cycles have lasted to 3 years. Only rarely would I get allmost a day off.
The shortest ever untill this last one was 4 months.

The last cycle (wich I am possibly still in) was broken with an RC seed dosing regimen at 3 months and it did fade away.. since then I have dosed infrequently as the CH feelings return roughly every month or 2.

Title: Re: How long is your longest cycle ?
Post by Leemo on Oct 3^rd, 2006, 2:13am

My longest cycle has been over 4 months of at least 1 headache per night. It seems the further into the cycle, the more frequent and intense they get. To make things worse, my employer dropped our insurance so I can't get o2 or Imitrex right now. I can't afford to buy it on my own since 2 shots of Imitrex would cost me $680. If there is anyone out there near the Twin Cities, who could help me with either O2 or Imitrex? I would gladly pay your co-pay if you could help me out. I'm really desperate at this point. I applied for insurance through the state but was told it will take a while to come through. My email is leemo88@comcast.net .

Title: Re: How long is your longest cycle ?
Post by nani on Oct 3^rd, 2006, 8:52am

Hello Leemo. Welcome. I'm sure that you realize what you're asking is illegal.
There are a few treatments that are not expensive and do not require prescriptions. Have a look at the kudzu thread at the top of the Medications board. Cheap, and OTC.
George mentioned welders oxygen. That's what I use.
Do you get hit during the night? Melatonin is a great help if you do.
Need a quick abort (that's cheaper than Imitrex?) Red Bull helps many.
Read all you can, and you'll find some help.
pain free wishes, nani

BTW, Annette, my longest cycle to date was 5 1/2 years. :)

Title: Re: How long is your longest cycle ?
Post by BigCoffinHunter on Oct 3^rd, 2006, 10:10am

I've had 2 cycles so far...each time 2 months to the day. I can't believe our biological clocks can be so precise.

Title: Re: How long is your longest cycle ?
Post by Bob P on Oct 3^rd, 2006, 10:13am

I've been episodic for 36 years.

1st 20 years I would have a 4 to 6 week long episode every 8 or 9 months.

Last 16 years the episodes keep getting farther apart but the length of the episode is unreliable. Last remission was 3 years 3 months long. Last episode was 5 months long.

Title: Re: How long is your longest cycle ?
Post by Melissa on Oct 3^rd, 2006, 10:40am

40 days. They only go maybe 4-5 days shorter, but they've never been over 40 days. I never stayed on preventative RX meds long enough to lengthen a cycle, and when I took trex, it just made successional hits intense.

Taking natural preventatives & using O2 as an abortive are the best for me.

Title: Re: How long is your longest cycle ?
Post by E-Double on Oct 3^rd, 2006, 3:22pm

on 10/02/06 at 02:06:52, BB wrote:

From 1994-2004 was episodic spring and fall about 1 month long only at night.
2004 came and never left. It is now2 yrs and 5 months and have only had a couple of short breaks (almost 2 weeks on two sepreate occasions)
The only difference in attacks seem to be shorter since coming off meds.go figure.

Title: Re: How long is your longest cycle ?
Post by stpp77 on Oct 3^rd, 2006, 4:28pm

Hi, my longest cycle has been 7 weeks (short by many comparisons), however they do seem to be coming closer together--instead of three cylces a year up to four cycles. Each cycle seems to get worse on the KIP scale and number of hits. They also seem to effect me more and more physically then they used to--memory, balance, etc. (probably due to the higher levels of pain).

Hope this helps.

Title: Re: How long is your longest cycle ?
Post by Sandy_C on Oct 3^rd, 2006, 4:55pm

Hi Annette. I really appreciate having you on this site.

I'm episodic, with first cycle in May of 1999 - lasted 8 weeks. I would get hit once a day at 8:30 pm without fail. Since then, cycles have come every 18 to 24 months - which makes me one of the lucky ones.

Shortest cycle was 6 weeks - one CH in the evenings at 8:30 sharp.

Longest, which was in 2005 was 16 weeks - but very different than previous ones. It began with my usual 8:30 hit, then escalated in to day time hits around 2:00 pm, and just a few times at night - all in all 3-4 hits per day. I was using the Kudzu treatment, and can honestly say I was not one of the success stories because I believe the Kudzu increased the number of hits, lengthened the cycle, even though the hits were somewhat milder. The cycle went like this for 12 weeks, then I had one month of pain free time, and it started up again for another 4 weeks on the OPPOSITE side of my head. [smiley=huh.gif]

It's been since the end of July 2005, so it's been 14 months, but for the last couple of months I've been getting little K2 hits now and then. I've been using rc seeds for 7 months as "maintenance", but increasing the dosing to try to bust the cycle that seems to be knocking at my head.

Thanks for the great research you are doing, and for sharing information you are finding. We all appreciate it.

Sandy

Title: Re: How long is your longest cycle ?
Post by Carl_D on Oct 3^rd, 2006, 8:09pm

When mine started, the cycle was brief. Every cycle afterward seemed to get longer and longer until I went chronic for 8 years. I went into remission in February this year, but started back up late July.

I just keep hoping and praying I go episodic. I have the fear of going back into chronic cycle for another 8 years again, or until I die.

Longest cycle: 8 years. Next to that I think was 9 months.

Peace,
Carl

Title: Re: How long is your longest cycle ?
Post by Jonny on Oct 3^rd, 2006, 8:19pm

on 10/03/06 at 20:09:15, Carl_D wrote:

I went chronic for 8 years. I went into remission in February this year, but started back up late July.

I just keep hoping and praying I go episodic.

You are episodic, it will be next July to know if your chronic again...aint it great to not be chronic? ;;D

It is for me ;)

Title: Re: How long is your longest cycle ?
Post by Erebus on Oct 3^rd, 2006, 8:49pm

Hello all. This is my first post.

Thankfully I do not have really long cycles anymore, but when I did they were so bad that I would bash my head into whatever I could and was extremely depressed. (Based on the Kip scale I'd say those were 10s).

More recently I only get a cycle about 5 or 6 times a year lasting about 2 or 3 days most of the time with at least 2 headaches lasting a 2+ hours. Unfortunately they always seem to be during the week when I need to be at work (stress / over working perhaps?). No specific triggers that I know of. Sometimes flashing lights seem to be the cause.

Sometimes I get them 2 or 3 times during a single day only. These always seem to coincide with weather patterns such as Fronts coming in and High Pressure systems.

Title: Re: How long is your longest cycle ?
Post by alienspacebabe on Oct 3^rd, 2006, 9:51pm

Hi Annette. My longest cycle has been 30 months. Right now, I have no cycle - they hit when they want, which isn't very often at all.

*note: for me, shadowing is not considered being in cycle.

Title: Re: How long is your longest cycle ?
Post by BB on Oct 4^th, 2006, 12:21am

Thank you very much every one for posting.

Guess there is no real pattern to the cycles even for the individual person.

I guess the lesson we can draw from this is : cluster is rather unpredictable , therefore instead of worrying about how long the cycle is going to be, or when is the next hit going to come ..

LIVE LIFE TO THE MAX WITH OR WITHOUT CLUSTER

:-*

Annette