Greetings All,

I would be remiss if I did not begin with expressing my sincerest gratitude to all those responsible for the development of, the content of, as well as those that monitor and reply to the posts of us greenhorns (I don't like that word newbie) on this website.

Please accept my apologies now for a possible lengthy post. But, if there is one thing that I have learned from this site is that information and knowledge are going to be key in others helping me and myself in managing my headaches. Also you gave me 55,000 characters.

A little about me...Last Thursday, Thanksgiving day, there was discussion with my family members regarding the recent headaches that I have been having. My brother-in-law mentioned about a dozen times that I had Cluster Headaches, and about a dozen times it went directly over my head. Well, day turned into night (cringe) and in between the 'icepick' poking through various parts of my head I turned to Google which led me here.

I was reading through the 'cluster traits' section and kept scrolling to the top and bottom looking for a byline to see if I had written it myself during one of those 'foggy' nights induced by the pain and self medication. I am a textbook case of Cluster Headaches. I took the cluster quiz available and got 11 of 12 answers 'right'.

I had been suffering through these headaches for about the last six to nine weeks. Please know that through that period of time: I did have a legitimate sinus infection which eventually settled into a cracked tooth which was then extracted and a replacement implant done, my mother-in-law passed suddenly as well as some other personal and professional 'stressors'. My sleepless nights and pain were all to easily written off to that. It did become clear as the infections were treated, the implant healing and the stressors fading there was something else going on.

For the rest of the Thanksgiving weekend I spent as much of my 'lucid' moments as I could reading and re-reading the wealth of information provided on this wonderful website (Have I said "Thank You" to all those that contribute?) and started to formulate a plan of attack.

Since I had not been seen by a primary care physician since November 2009, the hardest part of my plan was trying to find the best 'entrance' to our wonderful healthcare system. I ended up calling my parent's primary care doctor who has treated my father for migraines a number of years back, he was not taking new patients but I got in to see his newest partner who is fresh from medical school.

Please let me now share my successes of the week that were only possible because of newfound knowledge from this website (Have I expressed my gratitude for all those that have contributed here?)

Monday, I was able to be seen by NEW primary care physician, who agreed 100% that what I was suffering from was Cluster Headaches and was able to secure a prescription for Imitrex nasal spray. (I am so blessed)

While the Imitrex provided some relief, it of course, has it's inherent limitations on dosage and frequency.

By Thursday 3:00 AM, having been awakened by the 'Beast' every hour or hour and a half for I am not sure how many nights in a row now, and having burned through 75% of my weekly limit on the Imitrex dosage I knew it was time to see the good Doc again.

By 6:00 PM on Thursday, I managed to secure:

a) An additonal prescription for Imitrex (5mg dosage instead of the 20mg previously otained)

b) Four 'E' type cylinders of Oxygen (My regulator maxes out at 15 LPM and I was only provided a nose 'granola' hehe). Let me tell ya, my poor doc probably still has a bruise on her forehead from me 'browbeating' her into this.

c) I have scheduled (a long ten days from now) an appointment with a Neuroligist, one who is a headache specialist.

I know I have mentioned how blessed I am, but know I am blessed only in having found this website.

I know for certain I would not have been able to aquire the health team members or the above mentioned tools without the information and education that I was provided through this website, and for that I, again, will be forever grateful to those that have and continue to contribute.

I am still far from being pain free and was awakened once every hour last night till I gave up again at 3:00 AM. The longest period of sleep that I have been able to obtain recently was one week ago tonight and that was only 6 1/2 hours of self-medicated, drug induced sleep.

I still have many questions that I am certain I will find answers to here, but for now I have to follow up on a couple of leads on a non-rebreather mask to replace my nose 'granola', and to take care of a few other things that normally I would never notice, but have become extreme irritants due to my lack of sleep, and possibly put together four or five hours of continous sleep before tonight's dance starts.

For any greenhorns still with me the best advice that I can give you has already been said by others: read, then re-read and when you are done go back and read again the valuable and voluminous information that is available here, print it out, carry it with you, talk with others about it, post and question others about it, and above all know that there is hope.

For any veterans still with me thank you, thank you, thank you for going before me, and please, please, please continue what you have already done with the patience and compassion that you have displayed.

May God Bless us all,

d

I'll echo Joe's reaction. By learning all that you can you've helped to take control of how you're being treated for your CHs and have got in such a short period of time what takes many people months or years to obtain.

Have you got a non-rebreather mask yet? You'll find that the canulas are almost useless. I'd strongly recommend the mask that you can get from this web site.

Keep reading and asking questions, you'll soon become an expert!

Greetings Joe & Mike,

Your replies are most appreciative.

As I am posting this my dear wife is at the pharmacy securing the Melatonin that has been recommended.

No, I chased a few leads today on a non-re-breather mask to replace the nose 'granola' that was provided with the tanks, but was not successful.

I tried real hard to talk the driver who dropped off my tanks out of a mask but apparently that needs a prescription as well???

I never used the 'granola' provided, I simply cut it off and having been sucking right through the hose.

I am a practicing Certified Public Accountant and as such tend to be analytical information 'sleeper' (if you haven't noticed). Therefore, I do have many questions that I am looking for answers for. While some of them seem like silly questions to me, I also know there is no such thing.
Posting on any forum or message board is brand new to me, so if there is anything that should be posted elsewhere for the benefit of others please let me know.

Regarding my doctor, while she has many of the qualities that I have been looking for in a physician she is still 'green behind the ears'. This may be one of the reasons she was able to recognize the symptoms and declare me a 'text book' example. However several things she said makes me think she does not have the knowledge or experience for the proper treatment of.

On my first visit to see her I was not suffering nor was I expecting to suffer in the immediate future, yet she insisted on putting me on oxygen in the office "because it will break the cycle". My knowledge tells me that the oxygen should be used as an abortive therapy and not to end a cycle. Any comments???

Even though in her mind the oxygen may break the cycle she was extremely, extremely reluctant to provide me with a prescription for use at home. It was only ofter I asserted my new-found knowledge and provided her a printout of the 'oxygen info' tab of this website that she relented and insisted that I follow up with her the first of the week to keep her informed because she was "experimenting with me".

The other comment she made was: "The typical cycle is eight weeks and you are six weeks into it". And again any comments ??

In my mind and please any input would be appreciated, I feel that I should try and wait for the Headache Specialist that I will be seeing in ten days to make any decisions beyond abortive therapy.

Some of the following questions and statements of my understanding may seem silly, but I think it is important for me to adjust my expectations in order to limit my frustration and maintain the hope that you people have provided me.

Which is a better definition of 'attack', the single headache that I am having right this moment, or, the cluster of 4-8 headaches that I may have through tonight?

I'm also looking for a good understanding, explanation of a 'shadow' headache.

During the day I often have mild, dull pain on my affected side that never even comes close to the pain I know I can experience. I have also had several, not near as many as I would expect, stress headaches, and I am calling them that because they are accompanied by tension in my neck, shoulders and back. Any advice, knowledge or wisdom in treating these with some over the counter Tylenol, Exedrin or the myriad of other pills out there.

The Imitrex I was prescribed (20mg nasal spray) came with explicit instructions not to exceed 40mg in any 24 hour period and not to exceed 80mg in any one weeks time. Any comments as to reasoning behind these limitations and any comments on exceeding these limits. I have read in other posts of much higher doses being prescribed, although those posts may have come from across the big pond.

Please know how much everyone here is appreciated.

Hope all is well,

d

Greetings Tate,

Thank you for your reply and the kind words.

That feeling of being isolated and alone has subsided greatly since finding this site and the effects of prolonged lack of sufficient sleep has taken center stage. Over the last 24 hours I have convinced myself that I won't die from the headaches, but am not so convinced about the lack of sleep.

Again your reply is appreciated.

Hope all is well,

d

My knowledge tells me that the oxygen should be used as an abortive therapy and not to end a cycle. Any comments???
You are correct, oxygen is an ABORTIVE not a prevent. Some have even gone as far as breathing a low flow 02 during their sleep to keep beasty at bay...it doesn't work

Even though in her mind the oxygen may break the cycle she was extremely, extremely reluctant to provide me with a prescription for use at home.

I must be careful not to rant and rave here! Highly addictive schedule II narcotics? No problem we'll prescribe them like candy. Addicitive muscle relaxants and barbituates?? No problem. An inert gas which kids weld with in high schoo and oxygenate their bait wells with? No THAT'S too dangerous.....drives me crazy.

It was only ofter I asserted my new-found knowledge and provided her a printout of the 'oxygen info' tab of this website that she relented and insisted that I follow up with her the first of the week to keep her informed because she was "experimenting with me".

Way to take charge, don't lose this attitude!

The other comment she made was: "The typical cycle is eight weeks and you are six weeks into it". And again any comments ??

One of the first terms you'll learn to discard is "typical" when it comes to CH. For over 20 years my cycles went 8-12 weeks, 2 cycles a year. remissions went about 3 months. In my 40's and now in my 50's, all over the board, 8 month cycles, 2 year remissions....typical is not a good word when dealing with CH!

In my mind and please any input would be appreciated, I feel that I should try and wait for the Headache Specialist that I will be seeing in ten days to make any decisions beyond abortive therapy.

Not a bad idea, the urge will be to try a lot of new meds, sometimes too rapidly to give them a chance to work. A slow patient approach to CH is best for the long run, especially since you now have 02.

Which is a better definition of 'attack', the single headache that I am having right this moment, or, the cluster of 4-8 headaches that I may have through tonight?

You probably already get this on one level. A CH attack is obvious, you know when it starts this isn't a stress or hangover headache. It starts, builds, peaks, and recedes. That's an attack. Each one of those is a separate attack.

As described above, a shadow is an attack that has all the characteristics of a CH, sometimes even the droopy eye and runny nose, but it just never gets established. Oxygen will work on these too.

During the day I often have mild, dull pain on my affected side that never even comes close to the pain I know I can experience.

Not sure here. For me, an untreated attack, when I can't get to an abortive and have to ride it out, will result in a 2 day "dull headache" all around the CH area. It's like the attack physically beat my head.

Lastly.....a non rebreather mask recipe:

Take a small trash bag, run the tubes from your canulas into a small hole in the bottom of the bag, tape it up. Bunch the top of the bag with your hand. Fill the bag with oxygen, take a breath out of the top, pull your mouth away and exhale. You're now the proud owner of a non re breather mask!

Joe   (aka MkGiver)

Hi there D,

Forgive me if I missed this somewhere...is the imitrex working to abort the headaches? The oxygen?? Is the issue with the imitrex that you are having too many headaches to use that much medication and the oxygen isn't working for you...or you are having so many headaches that your sleep is just so broken that you are like someone with a newborn AND a whole lot of pain??

Hopefully, the specialist will find a preventative that will lower the number of attacks you are having. I know prednisone is a nasty drug, but a taper will hopefully provide you a break if you go on while you wait for the verapamil or whatever preventative you end up with to take effect.

I have yet to try the oxygen. I am hoping that it works for me. I use imitrex in the injectable form...I get the individual vials and use the tiny needles. It really doesn't take much medication at all for me to abort the headache and when I use it it works very fast...less than 10 mins or so, but, I have so many headaches per day and as you know it isn't good to use the drug very often and then I start getting headaches from the imitrex itself that are as bad if not worse than the headaches I started with...so then I end up trying not to use anything and the headaches go for hours and it can be awful. So, if oxygen works that would be amazing!!

I am hopeful that you can get some rest and catch a break. Your wife sounds like she is a great support for you. Wonderful!

Might not have the answer, but you can ask me anything!

Best,

Tate

Greetings All,

Tate - My wife is the best and unfortunately because she is my wife has taken the brunt of my current mental and emotional state. And with her mother passing quite suddenly six weeks ago she needs the support and compassion that I am finding harder and harder to provide as the days (and nights) go by, just another source of frustration for me. Maybe you could do me a favor and just keep reminding me to give her a kiss and a hug and let her know what she does mean to me.

As far as the Imitrex and Oxygen goes...No, you did not miss anything as I hadn't posted much details about my use and results.

I know I am so blessed and lucky to have accomplished what I have in 1 weeks time especially given our health care system, that consequently, selfish as it may seem my postings have been more to assist me in mentally processing information and input I have obtained.

Imitrex - I am using the nasal spray and when I do use it, it does abort that attack, which wasn't meeting my expectation of a pain free night and consequently was a little underwhelmed with it. It is a new 'power tool' in my toolbox and am still using all the safeguards and abiding by all the warnings. Even if I was to use it a little more aggressively, with 4-8 attacks in any given day it is of course not a total solution.

Oxygen - This to has brought me relief each time I have used it, and I have burned through 2 of 4 'E' type tanks in 48 hours. Some of my dislikes and frustrations are without the proper mask I have taken to sucking directly from the hose and somehow I end up with drool running down my chin, the hose itself and all over my hands. My regulator maxes out at 15 LPM but without the reservoir I am not achieving the hyperventilation stage that I see recommended. I currently have only a six or seven foot hose which seriously limits my mobility at a time when I just want to walk.

It appears that with any of the abortive therapies I have seen improper use or overuse can result in the rebound headaches or (CRINGE) worsening of future attacks so there is that ever present mental and pschological fear factor involved in me using these.

I'm not sure how wise this might be but at the first sign of an attack tonight which was about 9:30 I:

1)  Slammed a RedBull
2)  Did 20MG Imitrex (this dose will only put me over the weekly limit by 5mg)
3)  Sucked on the Oxygen till I felt relief and then continued for a similar amount of time.
4)  Took 5mg of Melatonin
5)  Driveway Therapy
6)  I have my couch set up for me to sleep in an upright position.
7)  And last but not least...I will pray that I can report positive results tomorrow.

I am way past my bedtime again and I believe I feel the effects of the Melatonin kicking in so it is probably best I close.

Hope all is well,

d

Oh D,

Does sound tough and frustrating over there. Please pass along my sympathies to your wife! She is dealing with a lot as you are.

As I said, I have yet to use oxygen effectively... But just a thought... I know the hell of the imitrex rebound, so, are you able to get access to larger tanks and better mask and then NOT use the imitrex since the oxygen works for you? Maybe you would spare yourself the rebound pain and the "hangover" in-between headaches?? I know there is the waiting for appointments and insurance that bungles these efforts. I don't know where you are in this process...or how hard it would be to give this a try??

I have been where you are and know how you feel.

I am here if you just need to vent.

Tate

Greetings All,

The 'cocktail' of therapies I utilized last night I am fairly certain helped, but I am fairly certain it may have participated in the rebound effect that I keep hearing about.

I had an attack which started just about one half hour after I went to 'couch' and about every hour after. While the frequency of the attacks didn't change much they were probably the easiest and quickest to abort of all my nighttime attacks, even the ones that were fairly established. I was able to get all of them under control within 1-5 minutes using only my driveway therapy.

What I am thinking was rebound effect??  Generally after 'giving up' on sleep and starting my day I won't have anymore attacks except for a random few in the afternoon. This morning was a little different...about 7:00AM I started feeling that alarm go off in my neck and eye, I immediately ran for the RedBull, Oxygen and driveway, which eventually worked it just took much longer than my night time attacks.

As far as the oxygen therapy goes...

1. I know it works - which is probably most important.

2. I understand proper delivery system (by the way , the ch.com store had MY NEW mask in the hands of FedEx before 9:00 this AM....KUDOS to them)

3. Pretty certain about the flow rate and duration of therapy.

What I am uncertain about is how often I can utilize this method without:

A) Any increase in frequency and duration of attacks.

B) Causing any rebound effect.

C) Or any other problems or harm.

I guess I have the same uncertainties I listed above with utilizing the energy drinks.

Also regarding the energy drinks, I have never drank one before last week and had always heard to stay clear of them.

What I have been using is 8oz cans of RedBull, should I go for a larger serving? And when I go to buy them there is always a large selection of alternatives, is any of them better choice?  I just know enough to look for the Taurine.

I apologize for lengthy posts and again appreciate every one's time and patience with me. I have a sneaky suspicion that the answers I am looking for already exist on the website but my mental capacity has dwindled to the point that I am not even reading my daily newspaper which is something I have always done for 30+ years.

Hope all is well and God Bless,

d

Quote:


In brief, you can't be certain of any of the above, but you can be reassured in several things:

1. O2 therapy works
2. It is a nontoxic, nonaddictive abortive
3. "Rebound" headaches, as such, tend to not be associated with O2, but I am not at all certain you are experiencing rebounds. CHs have a tendency to "cluster," hence the name, around a regular pattern of occurrences which can include one attack every hour on the hour for a period of time.
4. There is some evidence that if you use O2 as an abortive early and every time, you actually reduce the frequency of hits and not the opposite.
5. If you are concerned about long time use and its effects, PM Batch about Navy Pilots.

Finally, there are those unfortunates for whom O2 either no longer works, or never worked. They are a minority but it is sad something so wondrous for some of us doesn't work for all of us. It is the malice of this horrible disease. Here's praying your new mask and higher flow rates will bring you the same measure of confidence and comfort it has brought to me. Blessings. lance

I'd like to Ditto Joe.  What an absolutely wonderful first post !!!!!!!!!!!!!!!!!   Kudos to you brother for mentioning CH MANY times to you. You've got one smart brother there. 

(It's a nasel cannula)     Keep reading and keep asking questions.  That's what this site is here for.  A bald headed guy named DJ with a heart of gold started this site almost 13 yrs. ago after finding almost nothing on the internet about this condition of ours.

Greetings All,

It is about 38 more minutes till sunrise, which means I have squeaked through another night and am only 3 days 4 hrs and 22 min away from seeing my Headache Specialist.

On Wednesday, after spending just about four hours at my office and running a few errands I was about a mile and a half from home and had to stop my car, get out and move around in some fresh air just to keep my eyes open. I have since turned my car and keys over to my parents just to avoid any temptation and to provide my wife some ease in her anxiety.

My Doc's parting words on the day she prescribed the Oxygen was, "please follow up with me next week since I am experimenting on you". That was one of my tasks for Wednesday AM while I was at the office. I called and spoke with one of her staff and relayed that I was using the oxygen, it was aborting the attacks and providing me some relief, expressed my gratitude and reassurance that it was the right move.

Wednesday afternoon my Doc personally called me (and woke me up mind you) in a panic. She was concerned I was using the oxygen too much or wrong, it was not working because I was still experiencing headaches and insisted that I go to the hospital right away to have a ?Blood Gas? drawn because we needed to have a 'baseline'. Well needless to say her panic and concern became mine.

Three and a half hours later I found out my ?Blood Gas? was normal. Mine was 40.5 and an acceptable range is 35 to 45.

After my fears, concerns and elevated blood pressure resided but still in a sleep deprived state of mind I came to the following conclusions:

1.) In the five days between her prescribing the Oxygen and my following up with her, she never bothered to read the Oxygen therapy information that I printed out and handed her, nor did she look at any of the other resources that I am certain she has available to her.

2.) In no circumstances EVER should a patient be reassuring or trying to provide their doctor with some sort of comfort level.

3.) Now, I am just an accountant, but I do know that any 'baseline' reading or testing should have been done prior to prescribing the oxygen and six days after.

Needless to say, the NEW primary care doctor that I previously referred to is now my FORMER primary care doc.

Tate - The oxygen works a treat and I have been able to keep my Imitrex usage to the limits prescribed at, and in my opinion that is too much. I've read through your posts and understand that you are trying to get your ducks in a row, please keep asking the questions of me it keeps me thinking.

Jon - I drank the last of RedBull stock yesterday, I found it doesn't come close to the Taurine and Caffeine contents you indicated. I have tried others since your post and the winner is Monster M-3 Super Concentrate, a serving contains 2000mg Taurine still unsure how much caffeine. Within 60 to 120 seconds of 'slamming' my first bottle I could feel it work from my head to my toe, and with a 5oz serving size I can still drink the water needed without getting that bloated feeling.

Lance - I have read Batch's info, but a reread never ever hurts. Also the pulmanary specialist, Bri, that did my Blood Gas was able to validate much of what I have read here regarding oxygen therapy.

Linda -

1.) Some say cannula some say 'granola'...some say 'nasel' some nasal.

2.) I saw a picture labeled DJ, but I didn't see a bald head...I saw a Solar Array for that Heart of Gold.

3.) I sure hope my brothers aren't reading your post, they might end up with a head bigger than mine feels at a 'KIP 9' attack; and to give credit where credit is due - a big KUDOS to my brother-in-law Bill.

4.) Most important please know that you put a smile on my face.

Hope all is well with everyone and God bless us all,

d

PS. Bri, if you did make it here and are reading this, Thank You, Thank You, Thank You for the information and extra time you provided me.

Ark  - I find the the terms "rebound" and "shadow" a bit confusing myself.  For me, my cycle is one characterized by a low level of nearly constant pain (akin to a normal headache punctuated by attacks which have reached 8's and 9's on the KIP scale.  The meds (Verapimil and Indocin) have knocked back nearly all the high level attacks, but the background pain is stiill there for some (but not all) of the day.  I do get little episodes that are almost certainly an attack trying to happen (nose, eye droop, a few short sharp pains) but the meds seem to keep it from full bloom.  Best of luck to you.  I hope you find the answers.