I am having 3 head cluters a night about each an hour long. one at 2, another around 4 and another around 5:30 I am taking 1 mg alprazolam aronnd 10:00 300mg seroquel  and 1000mg of Depakote at 12:00 before bed, I have struggled with insomnia prior to clusters, but I fall asleep around 1:30 and wake up at 1:58am with a shadow like a crow bar had hit my temple, I hit the 02 at 30 lpm (just got a new regulator, guess i shoulgn't have got my hopes up  :-[ ) but by 2:05 my pain has reached a 10 and the demon is back.  I'm having trouble breathing, I've lost my voice from the screaming, I try my best use the mouth piece because I have to much drainage from my nose. 
I though breaking my femur was bad but I'd put that at about a 6. My questions are do you take anything to fall back asleep after an attack, i taking zaleplon 10mg doc says similar to ambien but i don't feel sleepy at all. I'm really discourage at the moment because I know in another 30 minutes, its going to be torture all over again.
Also my doc has me on Amlopine Besylate 5mg which he says should cure these hellish cluster in a 6 weeks but I'm already 9 weeks in and seeing no improvement. I cant keep living my life with and hour and a half of sleep a night, and on top of that I have a herniated disc and chro's disease so sleep during the day is impossible. I mean the pain is only about a 3-4 compared to these clusters but all together this pain is eating away at my soul.

So is Alodpine besylate the best preventive, why isn't the imitrex nasal spray or the 02 aborting or at least lessening the pain. Is there better sleeping meds you guys are aware of that I could be taking to sleep in between attacks. Lastly my religion dictates no drugs and I have chosen this but I read as a last resort a doc will prescribe START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE is this true, I have moral issues, but has any one actually been prescribed this and does it truly  abort the head ache? Thank you for listing and any insight you can provide on my regimen!

   Sorry your suffering so....
I am on Verapamil, Zomig, O2, and I still get 1 -3 hits per night  ...Just a matter of figuring out what and when to take what i guess.

   You might try some Melatonin, It is not expensive, and it really works pretty good.   Also I find that the energy drink (Monster) Helps me a lot during the day.
    Never thought it would, but it is helping with all those daytime shadows.
   Hope you get some relief soon...9 weeks ..Yikes!
lorac

Hi Cluster,

I was on Amlodipine Besylate when my cycle started.  It is a calcium channel blocker that is Not known to be used for clusters as far as I am aware... I switched to Verapamil.  It is one of the top few treatments out there.
You may want to ask your doc to try switching you to Verapamil.  Do a search for Verapamil on this Site - Bob Johnson posts regularly on the way it is prescribed for CH.  You can print this out for your doc and hope they work with you?
I have never taken anything to help me sleep, as if it is the CH that is preventing it, I doubt there is anything but the heavy duty stuff that will help and I refuse.  I have slept little many work days and made it thru ok... it IS frustrating.  I have been in cycle for way too long now.  :P

Hang in there and work with your doc to move forward! ;)  Don't let it get to your soul...   this is what you have to keep you fighting!!   :)  You Can do it!  As you said, you have before!   8-)

Val

Man that is just freaking awful. Really sorry to hear that C Buster.

2 things:

1) Have you tried imitrex injections (half dose a la the "imitrex tip" outlined on the left of the main message board page here)?

Personally I wouldn't mess with the imitrex inhaler since I can get immediate and very effective relief with the injection, and can take twice as many doses in a day since a half dose can work well....although for the occasional raging whopper that wants to peg the K10 meter I do have to take a full dose, when I don't have 02 as a supplement.

2) If I were you I might consider trying to get the very saintly and eager to help Cluster Chuck on the horn (or Skype), as he seems to be the highly qualified man who could run through the approach you're using for o2 intake and troubleshoot it in case anything is being overlooked or could be more optimized. I know I've run into some stumbling blocks with it (beyond my earlier mask issues), some of which I didn't realize until just recently were impeding the effectiveness.

LORAC Melatonin is not a sleeping pill won't induce sleep its best used if traveling jet lag take 3 hours before bed, I need something to knock me out so I not running on 30min-1:00. I tried Energy Drink, doesn't do a thing.

VAL Verapmil, how many people do you know who have or haven't responded to this medication? If it doesn't work do you have recommendation for next rough of preventative? My Soul is grown through this experience, I know that at least by April 2010 they will subside, thank god and god bless all those chronic Cluster suffers, make a vow to never take ones own life, and when everything you do and experience in life is associated with pain, its difficult to do. But its doing those things we don't want to do that makes us stronger. I think I'm going to get into MMA after I get my back fixed, my threshold for pain has grown immensely ;D!

BEJEEBER
I tried injections went I took a trip to  ER because there was nothing I could do Aside  from amputating my leg to get rid of this pain..... disappointing, but I really try not to get my hopes up rather just be grateful that these horrendously painfully devil head ache don't cause any real damage!
Do you have his Skpe name, I got O2PTIMASK (does demand valve make a noticeable difference?)
and a great flotec regulator 40lpm is what my big lungs take with NRB mak. Once again I hope for the best plan for the worst, but could you pm Cluster Chuck skype name? Thank you very much all for your help I'm so lucky to have a support group that can not only understand what its like but truly sympathize . I hope I can be help like you alll have been to me, I might not have knowledge of what works yet, but I know how to live life regardless of how hard, painfull, and unfair as it might be. 
MY RING-TONE, Remix

Thant that doesn't kill me can only make us stronger, I need you to hurry up now cause I cant wait much longer, I know we all got to fight right now, Cause this pain cant be any wronger Man I'we been waiting all night now, thats  how long this demon been on ya, But i'll fight ya tomorrow god I need ya right now! >:(

Cluster Chuck Skype info has now been PM'd.

I love that guy's username!  ;D

I haven't tried the o2 on demand thing yet.

I think a little breakthrough for me yesterday was when I realized I was just going to plain be able to get more oxygen if I did it mask on, inhale, mask off, exhale. None of that exhalation back pressure from trying to blow through a tube, against the oxygen flow. I could also immediately tell this was working better by how my reservoir bag was emptying a lot more.

Hey C Buster, I suppose you've already tried this, but in case not - what about hitting these monster attacks with BOTH imitrex and O2 right off the bat?

Cluster Buster wrote on Aug 28^th, 2009 at 3:11pm:

LORAC Melatonin is not a sleeping pill won't induce sleep its best used if traveling jet lag take 3 hours before bed, I need something to knock me out so I not running on 30min-1:00. I tried Energy Drink, doesn't do a thing. VAL Verapmil, how many people do you know who have or haven't responded to this medication? If it doesn't work do you have recommendation for next rough of preventative? My Soul is grown through this experience, I know that at least by April 2010 they will subside, thank god and god bless all those chronic Cluster suffers, make a vow to never take ones own life, and when everything you do and experience in life is associated with pain, its difficult to do. But its doing those things we don't want to do that makes us stronger. I think I'm going to get into MMA after I get my back fixed, my threshold for pain has grown immensely ;D! Thant that doesn't kill me can only make us stronger

Cluster,

Of the 39% of the people who said that a preventative worked for them on a poll on this site, 7% said Verapamil was the best - but there is also much medical data supporting this is a good preventative.
I am a chronic clusterhead. Everything I do and experience is not associated with pain.  It is a matter of how you look at things.
I have been on verapamil since almost the start of my ongoing cycle - and it does not prevent the hits, but prevents a good number of the Kip 9s and 10's... this is a big help in my opinion. 
The other top preventatives to  try after verap are lithium and topamax (now generic topiramate) - some use them together.  verapamil and lithium is a wonder combo for some.  Some need only one. 

I wouldn't dismiss Lorac's idea about Melatonin right off - when I started taking it 10 mg per night 1/2 hr before bedtime, my night time cluster headaches almost disappeared.  I now mostly deal with daytime headaches.

This is the article on Verapamil I was referring to that Bob usually posts... 

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
===============

I take Lorazepam at bedtime, along with Melatonin.

Just because you take a benzo, seroquel, depakote, it doesn't mean you can't take Melatonin too. It's a natural chemical your body produces.

I've also benefitted by the Melatonin. I used to have insomnia, and while it does NOT knock me out when I'm having a bout of insomnia, it does prevent the night hits when I CAN sleep.

The reason it works to prevent night hits, is documented in various ways on the site. And most likely on the OUCH website. Our problem isn't GOING to sleep, it's when we GET into REM sleep that we wake up with hits. At least if I recall correctly, that's what it is. So all of those meds, aren't exactly doing the job that Melatonin would do.

If nothing else, you only pay about $5 for a bottle or so, so in the end you're not losing a whole lot of money.

Hope this helps.
PFDAN
Mystina

CB,

Get some pH test strips and start checking the pH of your saliva and urine. The best available come from pH ION...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

If your pH is too low (too much acid), none of the vasoconstrictors including high flow rate oxygen therapy will be able to tame the beast. 

pH ION test strips come with a two day data collection process where you measure the pH of urine and saliva three times a day for two days that should give a good reading...

I've found measuring and recording saliva pH three times a day (morning and noon before meals, and night at bed time ) and averaging them each day for a week or more provides a better saliva pH profile...  You'll see variations throughout the day and from day to day.  To make sure your pH measurements are consistent, rinse your mouth with water and wait five minutes before taking the saliva pH reading.

The next thing you need to do is measure the pH of your saliva as soon as you realize an attack is starting.  You'll see that reading is below your daily pH average.

If you see a clear trend, see your doctor/PCP with the data.  Some of us use calcium citrate, magnesium, and zinc tablets to help buffer the pH back to neutral.  This works most of the time to lower the frequency and intensity of attacks...  It also makes oxygen therapy more effective.

Diet can also play a role in low pH.  A chart at the following link will show you alkaline forming foods to eat and acid forming foods to avoid.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Shoot me a PM with your email address and I'll send you an excel spreadsheet you can use to track your saliva pH.

Take Care,

V/R, Batch

BATCH,
I actualy just sent in saliva/ urine test working with a doctor START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, I know my ph is all messed up try eat at healthy as possible so my body is not to acidic or acaline ying and yang, As well supplemnet probiotic and digestive enzyme, lemon and apple cider vinegar. Chron's disease is horrible hard to digest food, have a lot of burning, burping up stomach acid and occasionally throwing up   blood or coming out the other end.

Pixie-elf
I don't mean to right you off, I've struggled with insomnia for years, the pain and clusters + PSD/ pannic disorder have just compounded my inability to fall asleep and stay sleep regardless of my accumulated sleep deprivation my brain waves ( Beta, alpha, theta, delta) are racing and blood pressure due to pain skyrockts . I actually prefer 5-HTP simply because it  results in the increased the production of neurotransmitters such as serotonin and norepinephrine that stimulate the noradrenergic receptors in the brain. This stimulation directly triggers the production and release of melatonin. Just found it more effective than Melatonin alone. I'd use it along with audio tapes on lucid dreaming that have sound waves in both ears to get my brain to slow down to the point of sleep. I loved it before the pain started, lucid dreaming is a phenomenal experience few people ever work on to view what the subconsciousness mind is processing,   but I knew by  lucidity   in my dreams and by the way I was waking up refreshed I was getting the  stages of restorative  sleep I needed.  My problem is that I need the  4 stages of sleep, and just being unconscious does not mean I'm getting the proper : restorative properties that sleep provides. If any one has input please feel free...

bejeeber
thanks for the info.

VAL
"I am a chronic clusterhead. Everything I do and experience is not associated with pain.  It is a matter of how you look at things" I try and have the best outlook possible, but I find myself doing things to get my mind off of pain and to be in  the moment of now awareness. But I also find myself wanting to escape the pain. I just cant find the necessary thoughts to not associate life experiences with pain. Its as if everything you do, breakfast, shower, movies, friends and family you have a dentist drilling your tooth and a brawler constantly throwing blows to your face with every experience. I think this is why some people become addicts, because everything they do is associated with a euphoria. I know that my life will never be the same, I cant simply dwell on the great past where I could just enjoy the present, the ups and downs of life and get through physical pain as it comes. I need to learn how to live life with chronic pain.  So any tips you can provide of the wisdom you have learned of how to "keep your mind right" to not associate everything in life with pain I'm all ears! thank you so much every one!so much for your help!