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        Cluster Headache Help and Support >> Getting to Know Ya >> Another newbie here
        
(Message started by: carguy on Apr 2^nd, 2008, 11:46am)

Title: Another newbie here
Post by carguy on Apr 2^nd, 2008, 11:46am

Another newbie checking in. My name is Mike and I was pointed to this website by my wife. She has been feeling kinda helpless during my latest round of headaches so she went online and found this website hoping it might provide some help.

The good news is that I aced the cluster quiz. The bad news is that I suffer from cluster headaches.

I have just begun reading the vast amounts of knowledge on this site but so far I have been very pleased. It was nice just to read a description that described me to a T. Anyway, thanks to all for the info collected here for all to read. I'll be wading through the site for the next week or so trying to learn as much as possible. Thanks again.

Mike

Title: Re: Another newbie here
Post by Ray on Apr 2^nd, 2008, 12:08pm

Hello and welcome to the online family you never had. Please do read and learn as much as you can about the headaches and treatments here. Also, don't worry about asking questions, I'm sure you've got some!

We're here to help as much as we can. Tell us some more about your headaches, what medicines you're on to prevent and abort them. Please note: High flow oxygen use can abort a cluster headache for most of us in a few minutes and is a wonderful tool to fight them off.

Welcome again and wishing you well,

Ray

Title: Re: Another newbie here
Post by carguy on Apr 2^nd, 2008, 12:47pm

Thanks for the welcome.

I just got oxygen yesterday after hearing good things about it's use. I was lucky last night and did not get a headache so I am yet to try the oxygen. I am fortunate that my wife works in a doctors office so she has been bringing me home samples of Maxalt and Imitrex which seem to help some. I still get the headache so I'm not really sure how much the meds work. I was eating the over the counter stuff like M&M's but it did nothing and everyone was warning me about taking so much so I stopped. I saw a neurologist during my last go around about 18 months ago but the headaches stopped shortly after that so not much was accomplished other than to rule out things like tumors etc. This is about my 4th or 5th battle with these headaches with remissions lasting anywhere from 6 to 18 months. They almost always start out the same way...immediately following an alcoholic drink. I of course stop all drinking but by then it is too late and they begin happening even if I don't consume any alcohol. At first they were very regular and usually happened in the evening after work but have since progressed to waking me in the middle of the night and occassionally even happening in the morning. I'm about two weeks into this latest bout and really hoping this is a short one.

I want to say that I was happy to read about the severity of the pain associated with these headaches only because I was beginning to wonder if maybe I was just a wimp. I had never known anyone that suffered from this so I didn't really have anything to compare my pain to. All I knew was that it literally brought me to tears. I had never seen a grown man cry from a headache so I was questioning my manhood so to speak. Now I know I am not alone.

Sorry this got so long...guess I'll stop now. Thanks for listening.

Title: Re: Another newbie here
Post by Guiseppi on Apr 2^nd, 2008, 2:42pm

Welcome to your new family, my wife found this place for me also, saved my sanity!

Just FYI, the alcohol doesn't start the cycle, but is a nasty trigger for most of us while we are "on cycle." No one really seems to know what starts a cycle, otherwise we'd all avoid it for the rest of our lives! ;)

I'm episodic like you, meaning we get breaks between our cycles, chronics never get to go "off cycle!" The best way to attack these is with a 2 pronged approach.

1: A good preventative strategy. That's a medication you take when you are on cycle, that is getting headaches. The goal of this medication is to reduce the intensity and the frequency of the attacks. Common prevents are verapamil, lithium and topomax. There are many for you to read about and discuss with your doctor. Takes some trial and error but worth the effort. I use lithium at 1200 mg a day when on cycle, blocks 80-90% of my headaches.

2: an abortive strategy. You start getting a headache, now what. Pure oxygen, using a non re breather mask, at a high flow rate, at least 15 LPM, should be your first line abortive. I can kill a attack in as little as 6 minutes using oxygen. Other popular aborts are imitrex injectable and imitrex nasal spray, the pills tend to take too long to get into your system and are usually not effective. Many more abortives for you to read so you can intelligently discuss them with your doc.

A quick warning. Most docs know very little about CH. It's best to learn all you can and assist them with your treatment!

For now, try slamming an energy drink at the first sign of an attack, Monster, Rock Star, any containg BOTH caffeine and taurine. Many can abort or at least substantially reduce an attack using these.

Welcome to the board, I sure hope we can help you out!

Guiseppi

Title: measures.Re: Another newbie here
Post by carguy on Apr 2^nd, 2008, 2:57pm

You have already helped. I just learned that the oxygen mask I was given is not the best type being a re-breather and the volume is much too low...4-6 LPM. Looks like I have lots of reading to do. Even being fairly new to this I have already learned that most docs are far from experts on this subject. I spoke to a nurse practitioner who seemed to know more than the doctors I had already spoken with. I'm looking forward to learning as much as I can especially in the area of preventative measures. As I'm sure you are all aware, it can be very depressing waking up in the morning and wondering how long until the next one.

Thanks again

Title: Re: Another newbie here
Post by thebbz on Apr 2^nd, 2008, 3:10pm

Welcome,
12 to 15 lpm. You have to have a high flow regulator to handle that volume. Get to the 02 as quick as you can.
You will like the results. Take that non- rebreather and tape the butterfly shut on one side. Make sure you inhale with all the butterfly's closed. You need 100% 02.
Point is the non-rebreather will work, you need to tickle it properly.
all the best
thebb

Title: Re: Another newbie here
Post by Linda_Howell on Apr 2^nd, 2008, 7:07pm

Welcome carguy,

If you are not easily able to get a regulator and non-rebreather mask, pm me your address and I will send them to you. I do this all the time.

Realizing you are new here you may be reluctant to give me your address but I've been on this site now for 9-plus years, I'm chair-person for Family Services for OUCH and Guiseppi will give me a glowing character reference, I'm sure. ;;D ;;D

You've stumbled upon your second family here where everyone understands your pain, won't brush you aside with the "Just a headache" routine and will bend over backwards trying to help.

Just let me know.

Linda

Title: Re: measures.Another newbie here
Post by Jonny on Apr 2^nd, 2008, 7:39pm

on 04/02/08 at 14:57:21, carguy wrote:

it can be very depressing waking up in the morning and wondering how long until the next one.

We know brother, we know.......Welcome home!!!!

http://youtube.com/watch?v=vqXQ_coJy4I

Title: Re: Another newbie here
Post by barry_sword on Apr 2^nd, 2008, 8:10pm

Hi Mike and welcome. You are not alone anymore with this.

Barry

Title: Re: Another newbie here
Post by RichardN on Apr 3^rd, 2008, 12:26am

Hi Mike and Welcome to Clusterville

All good advice above. I too use 02 to abort . . . can't take Imitrex due to some artery blockage and high cholesterol . . . 02 is a real miracle for those of us it works for (70%).

Don't discount water therapy (see "water X 3" . . . link on left. I'm convinced this has helped me greatly reduce the frequency/intensity of attacks.

Please DO ask any questions you might have . . . . the answers/info/caring/sharing you will receive here come from folks who truly know your pain.

Be Safe, PFDANs

Richard

Title: Re: Another newbie here
Post by carguy on Apr 3^rd, 2008, 10:42am

Thanks everyone for all the good advice.

I checked again last night and the mask I have is a non-rebreather but I noticed the regulator is only capable of 6 LPM...just as previously mentioned here. I did get a headache last night so I tried the oxygen on the highest setting and I think it did help. The headache went away fairly quickly...about 20 minutes. I'm going to check into gettting a regulator to handle the larger volume and if I have any problems I will let you know (Linda). I haven't even seen a doctor yet this time, didn't have much luck last time. I was able to get the oxygen because my wife works at a doctors office so her and the nurse on staff (It was her recommendation) arranged it for me.

Thanks again everyone. I will check back soon.

Mike

Title: Re: Another newbie here
Post by DennisM1045 on Apr 3^rd, 2008, 12:17pm

Hi Mike,

Welcome! You've already gotten some good advise. I just wanted to add my welcome to the list. You aren't alone anymore.

-Dennis-

Title: Re: Another newbie here
Post by RichardN on Apr 3^rd, 2008, 2:14pm

http://search.ebay.com/search/search.dll?from=R40&_trksid=m37&satitle=medical+oxygen+regulators&category0=http://search.ebay.com/search/search.dll?from=R40&_trksid=m37&satitle=medical+oxygen+regulators&category0=http://search.ebay.com/search/search.dll?from=R40&_trksid=m37&satitle=medical+oxygen+regulators&category0=http://search.ebay.com/search/search.dll?from=R40&_trksid=m37&satitle=medical+oxygen+regulators&category0=http://search.ebay.com/search/search.dll?from=R40&_trksid=m37&satitle=medical+oxygen+regulators&category0=http://search.ebay.com/search/search.dll?from=R40&_trksid=m37&satitle=medical+oxygen+regulators&category0=

The above link should take you to ebay and a list of medical 02 regulators . . . My second one was the one at the top for $21.50 . . . 0-15 lpm. Have had it for about two years with no problems.

If the link doesn't work, go to ebay and type in . . . medical oxygen regulators.

Be Safe,

Richard

Title: Re: Another newbie here
Post by Charlie on Apr 3^rd, 2008, 10:17pm

Welcome Mike and I'm glad you are getting some help from us. The thing about being among clusterheads is that you don't have the frustration of being the only one that knows what a horror this thing is. The first time I met them, it was wonderful. Nobody doesn't know exactly what it is or asks ridiculous questions.

I'm going to post my technique for you. Give it a shot.

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie