I think I'm up to 7 today. Can't wait til it's over.

oh man. What are you doing for relief? Do you have oxygen?

Believe me when I say we all empathize with you. 

May tomorrow only see you with 3 hits and the next day/month/year with none at all.

Hang tough and Like Christy said... what are you doing for aborting?  If you don't have 02 try to get it.   There is an excellent primer to the left (in yellow)

In the meantime...get some energy drinks wiuth caffeine and Taurine in them, cold packs like bags of frozen peas,  Breathe deeply in front of an AC vent.

I wish you nothing but some pf time. 

What prevent are you using? Something like verapamil, lithium or topomax?

Hoping you get a peaceful, pain free new years day. Do tell us a bit more about yourself. There are many newer treatment options available.

Joe

I'm at a high point (hope it won't get worse!) myself. Five last night and one just fading now.

I fill balloons with water until they're the size of baseballs, and freeze them. Wrapped in a towel next to my bed each night so when the pain wakes me all I have to do is reach over and grab one, press to my cheek.

The advantage of the balloons is that as they thaw they don't leak.

Hang in there!

Got slammed hard at 2 AM and again at around 8 AM.  Def the worse of the cycle yet.  My nose was stuffed on the right side and I just kept trying to blow it out - which usually makes it worse. I felt like I had 100lbs of blood pumping in to my head and a little demon poking around every so often, so I put it under hot water for a while. In the early stages of a cycle ice will help me, but once the big ones come, I need hot water.  Sleep clusters are just the worse, but I'm praying it's downhill from here.

For relief, I use 33mg of Imitrex as long as I get to it in time.  I split a 100mg pill into 3.   I've always wanted to try Oxygen and will def be getting it for the next cycle.

My cycles usually last for about 4 weeks and return every 18 months or so, like clockwork.  In past cycles, I would start off with 1 per day, then 2, then 3, 4, 5, 6,7 - and then back down the same way to 1.  I'm 42, been getting clusters since I was in my early 20's. After years of never being properly diagnosed, I found this site and tested positive. Just knowing that there are others whom understand the pain has helped me immensely.  I've never met another cluster head but would really like to attend something in the near future to reach out and just be there. 

I used to be a heavy coffee drinker since my late teens with bad sleep habits - less then 7 hrs. About 3 years ago, (2 cycles previous) I decided to quit drinking coffee on a daily basis and improve my sleep habits to see if it made a difference on the next cycle. While this change has not stopped CH from arriving timely, I have noticed a noticeable change in the duration of new cycles. My last cycle in 2009 was about 3 weeks, with approx 10 days of agony. I didn't record the amount of clusters, but there was definitely less than all previous cycles. Previous cycles always produced approx 80 in 4 weeks. My current cycle started officially on December 26th (I had very light shadows for a week beforehand). It now appears to be moving through fast.  I could be back to shadows in a few days. Up to 3 so far today, 1-1-11 at 6:15 PM. 6 hours to go for a total daily # count.

Is it possible that the one thing we all have in common is the destruction of our sleep quality? My theory, and it's only a theory, is that there are a lot of things in life that Clusterheads have in common that may have turned the gene on.  Things such as high stress,SAD, drugs like caffeine, weed, tobacco,alcohol, prescription drugs, etc., all affect your body's sleep chemistry.  It took me approx 22 years to develop cluster headache.   In my later teens and early 20's, I abused the hell out of quality sleep at the REQUIRED time my body demanded. - (Staying out all night, smoking stuff daily, drinking, tobacco, sleeping 4-6 hrs then napping later in the day, etc, - and then putting a BAND-AID on the problem by addictive abuse of  coffee, (16-24oz) every single day for 18 years, to make up for poor quality sleep habits). 

Don't get me wrong. I understand that there's some genetic factors involved and our hypothalamus' are affected in some way. But is it possible that genes are just blueprints? I guess what I am trying to say is that even though I may have been born with the cluster gene, it was OFF for the first 22 years of my life. In the 6 years prior to their development, did I (or we) follow the wrong paths in life which turned the gene ON?

Steve C

Probably not, a doctor who spoke at the recent OUCH conference spoke of his work with identical twins and CH. If one twin got CH, they both got it, and there onset was around the same period in their lives. That convinced me that for most of us, we're born with a ticking alarm clock, pre programmed to go off.

We've done countless surveys trying to isolate a common factor, no luck so far. I'm certainly not discouraging further investigation, I keep hoping someone will stumble on a cure for the damned things! ;)

Joe

spc351 wrote on Jan 1^st, 2011 at 6:18pm:

Got slammed hard at 2 AM and again at around 8 AM.  Def the worse of the cycle yet.  My nose was stuffed on the right side and I just kept trying to blow it out - which usually makes it worse. I felt like I had 100lbs of blood pumping in to my head and a little demon poking around every so often, so I put it under hot water for a while. In the early stages of a cycle ice will help me, but once the big ones come, I need hot water.  Sleep clusters are just the worse, but I'm praying it's downhill from here. For relief, I use 33mg of Imitrex as long as I get to it in time.  I split a 100mg pill into 3.   I've always wanted to try Oxygen and will def be getting it for the next cycle. My cycles usually last for about 4 weeks and return every 18 months or so, like clockwork.  In past cycles, I would start off with 1 per day, then 2, then 3, 4, 5, 6,7 - and then back down the same way to 1.  I'm 42, been getting clusters since I was in my early 20's. After years of never being properly diagnosed, I found this site and tested positive. Just knowing that there are others whom understand the pain has helped me immensely.  I've never met another cluster head but would really like to attend something in the near future to reach out and just be there.  I used to be a heavy coffee drinker since my late teens with bad sleep habits - less then 7 hrs. About 3 years ago, (2 cycles previous) I decided to quit drinking coffee on a daily basis and improve my sleep habits to see if it made a difference on the next cycle. While this change has not stopped CH from arriving timely, I have noticed a noticeable change in the duration of new cycles. My last cycle in 2009 was about 3 weeks, with approx 10 days of agony. I didn't record the amount of clusters, but there was definitely less than all previous cycles. Previous cycles always produced approx 80 in 4 weeks. My current cycle started officially on December 26th (I had very light shadows for a week beforehand). It now appears to be moving through fast.  I could be back to shadows in a few days. Up to 3 so far today, 1-1-11 at 6:15 PM. 6 hours to go for a total daily # count. Is it possible that the one thing we all have in common is the destruction of our sleep quality? My theory, and it's only a theory, is that there are a lot of things in life that Clusterheads have in common that may have turned the gene on.  Things such as high stress,SAD, drugs like caffeine, weed, tobacco,alcohol, prescription drugs, etc., all affect your body's sleep chemistry.  It took me approx 22 years to develop cluster headache.   In my later teens and early 20's, I abused the hell out of quality sleep at the REQUIRED time my body demanded. - (Staying out all night, smoking stuff daily, drinking, tobacco, sleeping 4-6 hrs then napping later in the day, etc, - and then putting a BAND-AID on the problem by addictive abuse of  coffee, (16-24oz) every single day for 18 years, to make up for poor quality sleep habits).  Don't get me wrong. I understand that there's some genetic factors involved and our hypothalamus' are affected in some way. But is it possible that genes are just blueprints? I guess what I am trying to say is that even though I may have been born with the cluster gene, it was OFF for the first 22 years of my life. In the 6 years prior to their development, did I (or we) follow the wrong paths in life which turned the gene ON? Steve C

   Why wait till next cycle?

            Potter

spc351 wrote on Jan 1^st, 2011 at 6:18pm:

Is it possible that the one thing we all have in common is the destruction of our sleep quality?

I'm at least one exception to this in that I can sleep anywhere and I can sleep through almost anything.



Guiseppi wrote on Jan 1^st, 2011 at 10:01pm:

Probably not, a doctor who spoke at the recent OUCH conference spoke of his work with identical twins and CH. If one twin got CH, they both got it, and there onset was around the same period in their lives. That convinced me that for most of us, we're born with a ticking alarm clock, pre programmed to go off.

The twins research only shows that for identical twins there seems to be a common link, however this doesn't prove that this applies to everyone. It also doesn't show that this is the only way (i.e. as a result of genetics) that you can get CHs.

What makes it hard to work out the causes is the relatively low incidence of CH.

I'm pretty sure that my CHs started as a result of a head injury. However it isn't possible, both from a practical and ethical standpoint, to see if giving someone a head injury can induce CHs.

Joe, do you have any more details on the twins? Sounds like a very interesting story which proves some genetic factors for sure, but I wonder if their lifestyles influenced the actual onset of CH? Twins tend to do the same exact things together. Could the development of bad sleep habits be the one thing that eventually led to the onset of their headaches?

Stel,  I'll try the ICE Balloon too. I do have some small and soft ice packs that help.  I tried hot and cold water switching back and forth and that helped today.

Another great remedy to apply heat is a sock filled with uncooked  rice.  Microwave for 45 seconds or so.  Works great and nice and soft too.

Just as a quick response to your survey and the patterns you lived: my history was nothing at all like yours, and I've had these things for 24 years, episodic at first then chronic (still) for the past 3 years. I think it's like Joe said-a ticking time bomb. Or we just hit the CH lottery, lucky us. Blessings. lance

Sadly I don't have much in the way of details on the twin studies. It just struck me in his presentation, that the few sets of identical twins he had encountered in his studies, that got CH's, started them at the same time.

That being said, I'm still of the opinion that there are multiple "types" of CH. The medical community has bunched us all into a "CH" category, but I feel there are many sub types. It helps me understand why lithium works so well for me, but is worthless for the next guy. And the same with so many of the prevents and aborts we use.

While it's intersting to try and figure out what "started" them, it's not a productive use of my time. They're here now, I spend my time planning to defeat the beast when he raises his ugly head!

Joe's worthless ramblings! ;D

1st off... Joe your ramblings are never worthless ;)

Potter: I'm with you on the O2.  Don't wait.  Especially now when you're getting the crap kicked out of you.  Muster up the energy and save yourself a lot of pain in the long run.

Imitrex pills are next to worthless.  Injectibles, melt tabs or nasal sprays are the way to go if you want to use triptans.

I hope you find some relief soon. 

-Dennis-

DennisM1045 wrote on Jan 3^rd, 2011 at 12:18pm:

1st off... Joe your ramblings are never worthless ;) Potter: I'm with you on the O2.  Don't wait.  Especially now when you're getting the crap kicked out of you.  Muster up the energy and save yourself a lot of pain in the long run. Imitrex pills are next to worthless.  Injectibles, melt tabs or nasal sprays are the way to go if you want to use triptans. I hope you find some relief soon.  -Dennis-

Could not have said it better myself. Why wait on the 02, it may stop alot of your pain.

spc351 wrote on Jan 1^st, 2011 at 6:18pm:

I'm 42, been getting clusters since I was in my early 20's. After years of never being properly diagnosed, I found this site and tested positive. Steve C

Hi Steve...I'm sorry you are suffering.  Question:  Don't know if I'm missing something here, but have you ever been formally diagnosed by a physician...preferably a headache specialist?  While it can be difficult to find a doc educated in CH, you certainly want to rule out other things and have a "go to" person.  Since your cycles seem to be relatively short, some prevents may not be necessary, but you would have someone to prescribe the O2 & imitrex injections.  Just sayin....take care and wishing you pf.

'I've always wanted to try Oxygen and will def be getting it for the next cycle. "

I'm not sure why I haven't tried Oxygen before.  I guess I thought it was too much of a hassle trying to explain to my doctor, whom still thinks that CH is a migraine.  I don't think he would know how to prescribe it anyway, so it's def time to find a specialist in preparation for the next cycle.

I should close Monday with 3 CHs, hopefully only 1 or 2 on Tuesday, and maybe a few light shadows after that.  I seem to be making a noticeable improvement from previous cycles. My total number of headaches for this cycle should close at around 50, as opposed to 80 in previously longer cycles.  The only major changes I made were quitting my daily coffee addiction and getting at least 7 hours sleep every night.

After every cycle I try something new, hoping to send my clusters into permanent remission.  CH has forced me to become a health supplement advocate. If I listed all the supplements I've tried or currently take, you'd all think I was a nut. -perhaps in another message subject in the future.

"His  Wife",

Don't know if I'm missing something here, but have you ever been formally diagnosed by a physician...preferably a headache specialist? 

I've taken the cluster quiz and scored a 100, but never been formally diagnosed by a specialist. My primary Dr. still thinks CHs are considered migraines, so I really have to stop going to him. He did send me for an MRI 10 years ago though to rule out other issues.  There's no recommended CH specialist's anywhere within 50 miles of me, I'll have to travel a bit. It will be worth it though.    

spc351 wrote on Dec 31^st, 2010 at 11:40pm:

I think I'm up to 7 today. Can't wait til it's over.

Quote:

For relief, I use 33mg of Imitrex as long as I get to it in time.  I split a 100mg pill into 3.

Quote:

... my doctor, whom still thinks that CH is a migraine.  I don't think he would know how to prescribe it anyway, so it's def time to find a specialist in preparation for the next cycle.

Yes, you've been enduring with very little help.  You may find it necessary to keep a headache log before seeing a neuro.  It will help to start noting each hit, time of onset, duration, what you took, and time of relief for aiding in diagnosis. 




Quote:

My cycles usually last for about 4 weeks

Oxygen is a worthwhile abortive and you'd only need it for one month it seems.

While it's intersting to try and figure out what "started" them, it's not a productive use of my time. They're here now, I spend my time planning to defeat the beast when he raises his ugly head!

Joe,

Nothing worthless in your replies.  Thanks for your feedback.

SPC351 sorry you are having such a hard time, Believe me I know what it's like and that it can get worse than you are at right now.   I hope you find relief soon in the mean time...

Here are a few over the counter helpers:

4-Way Nasal spray or Dristan 12 Hour Nasal Spray helps with the annoying congestion.  ** Note ** Do not use this more than 3 days in a row!!  It can cause severe sinus problems.

Taurine and Caffeine drinks (RedBull if you like it) to help prevent a hit when you feel one starting.

Melatonin or an Allergy (Zyrtec aka cetirizine works for me) pill at night before bed to help avoid night time hits.

The herb Kudzu has helped a few as a prevent.   

Deep breathing through the milder hits can help too.

Hot/Cold Compresses Depending on your preference can help as well.


Make sure you start a headache journal, you can make your own, here's what you will need to note on it.

• Day/Date:
  (use 1 column per day since you are getting nailed more than just a few times per day.)
  
• Time of Day of CH hit:   
  
• On pain Scale 1-10 (10 being the highest)
  
• Duration of Headache:
  
• Symptoms that come with your Headache:
  
• What, if anything you tried to get rid of HA:
  

You can make up your own HA Journal and if you get more than one in a day use 1 piece of paper/page per day, or you can use MS Excel for this.

Thanks for the updates. I have been keeping a log of all my headaches this cycle. I remember 2 cycles back, I recorded every moment of my life for 3 months prior to getting the CH cycle.  I recorded everything I could possibly think of - food, drinks, supplements, time slept each day, how I felt in the AM and PM, aches and pains, energy levels, dreams... you name it, I recorded it - bowel movements too :) - and the list goes on and on.  I was hoping to find some reason for CH but found nothing out of the ordinary. I guess it's to to review it again.  For some reason, I can't seem to get past the fact that I get a CH cycle every 1.5 years and that's that.

Update - Got hit with some back luck on this cycle.  I originally thought that my cycle was going to end quickly, hence some type of improvement from the last few cycles.....boy was I mistaken. I have been stuck with 3 per day (K6 or less) and the cycle does not appear to be ending.  This has never happened.  My cycles have always started at 1 per day and escalated to 2,3,4,5,6,7 - and then back down the same way over a 4 week period.  For some reason, I've been stuck on 3 and it's driving me crazy.

The only good news is that I set up an appointment last week with a Neuro in NJ and I'm scheduled for Friday. He was recommended from O.U.C.H... 

Sadly, as soon as you think you have a handle on predicting your cycle, the beast likes to morph on you. >:(

Joe