Hello everybody. I'm not real happy to introduce myself here, in this forum, but here I am. I go by Rod and am 58 years old. I've suffered from Cluster headaches for over 30 years. That in itself should tell you a little of where I've been. I thought I had outgrown these things but then just last month I was reminded of what I have endured all these years. When I first started getting Cluster Headaches computers were not in public use and I don't really know why I'm here except to say that as bad as Clusters get you can still keep going. Jokingly, my cure is just to cut my head off but then today, as I had an attack, I thought what if this pain continues after death? What a horrible thought. I couldn't stand being dead and still having this pain. So I just keep on living hoping that in a matter of time it will go away. I don't want to sound gloomy. I read of the younger people here trying different things and hope some day we all will have the remedy. So far I can't claim that fact. Anyway, I just wanted to introduce myself and say hello to everyone.
To a hopeful future,
Rod

Welcome to the board Rod. Lots of old time clusterheads here including myself that were "gifted" with clusters many moons ago ;)

Grab a seat my friend and ask or tell its all good.

Cheers,

Sean.....................................

(sp)

Hi Rod - welcome to the club - such as it is!  You're still a youngster to some of us. :)

Lots to read around here - wonderful folks that will help you.  A ton of information - oh, did I tell ya - lots of wonderful folks!!!!!

Carol

This Topic was moved here from General Posts by Linda_Howell.

I hope I did this right and I hope you don't mind Rod.   I have moved this topic to the "getting to know you" board in the hopes that people that check that board more often for newbies will see it.


Linda


If I didn't do it right, then y'all can laugh at me.   :D

O...M...G... I did it right.  I am a virgin no longer.


Hello Rod (again)

Please tell us what you have used in the past and if it worked or didn't.  I've been chronic for almost 22 yrs. now and pure oxygen has been my...and others...savior.  Had you tried it before?  What kind of preventative have you used?   We are all here to help you.  Ask questions and we will answer here or direct you to the answers you seek.


I only moved you here because you posted on the "General" board where they talk politics, and other general day to day stuff and your heartfelt post might have gone by the wayside there.

Again Rod...welcome.

You did perfect Linda. I should have looked at the forum locations better, then I would have posted here to begin with.
Yes, I have tried Oxygen many years ago. If I remember I first tried oxygen about 20 years ago then tried it again around 10 years ago. Sometimes  a substance will work at first then stop working. I'm trying Varapamil (180mg) right now but it seems to not be doing the job. There are too many medications that I have tried. At this point I'm basically just enduring the pain as best I can and hoping that this cycle ends soon. I appreciate your suggestions and am very happy to hear Oxygen is working for you. Thank you very much for your wecome and maybe I can help others in some way even if it is only with my understanding.
Rod

Thank you for understanding why I moved you.  ;)


Am I understanding you that the last time you tried 02 was 10 yrs. ago?   if so, then I have a project for you.  Go to this link and read.  it is the latest on oxygen therapy and it is a must read for anyone with CH.

 
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Please ask any and all questions right here, o.k.?   We're here to help you Rod.   :-*
 

 

Rod wrote on Mar 13^th, 2009 at 10:31pm:

Yes, I have tried Oxygen many years ago. If I remember I first tried oxygen about 20 years ago then tried it again around 10 years ago.

Welcome to the nuthouse family, Rod!

You had tried oxygen before, and I assume it didn't do much for you.  Well, time to try it again!

From talking with MANY sufferers that said it didn't work for them, I have found that VERY few do not get good results from it.  Most of those that did not get good results, I have found, were not using it properly:
1 > They were not using the right mask
2 > They were not using a high enough flow rate
3 > They were not getting 100% oxygen
4 > They were not getting on it fast enough

1 > You need to use a non-rebreather mask, and preferably the O2PTIMASK^TM, or a demand valve system.

2 > You should use at least 15LPM, or if no results, then go to a higher flow rate ... 25LPM or even 60LPM.  We have found that those that do not get the results needed at 15LPM, DO get good results at the higher flow rate.

3 > Using the disposable re-breather mask that is usually supplied, if it does not get a good seal to your face (especially difficult if you have any facial hair) and/or the side vents are not working or used properly, you allow outside air in, and that dilutes the effectiveness of the treatment.

4 > Speed is of the essence!  As SOON as you feel a hit coming on, get on the oxygen!  The longer you wait, and the higher it builds on the KIP scale, the harder it is to abort.

If you live here in the states, I would be happy to call you and talk to you, in person, about oxygen usage.  We can exchange numbers in PM.  OR, download skype and sign in there.  Many of us use that to talk back and forth.  It is free to download, and free to use.

Let us know how you are doing, as we DO want to help!

Chuck

Linda_Howell wrote on Mar 13^th, 2009 at 9:51pm:

I am a virgin no longer.

NOPE!!!  Just WAY too easy ... I am NOT going to touch that line!

:-X  :-X  :-X  :-X  :-X

Chuck

DESPITE that last comment Chuck....I want to thank you for adding to the 02 question for Rod.


(Rod, in case you don't know because you are new...Chuck and I have known each other for years now and we are just kidding around here)


Linda

Linda_Howell wrote on Mar 14^th, 2009 at 2:07am:

(Rod, in case you don't know because you are new...Chuck and I have known each other for years now and we are just kidding around here)

And, Rod, even though Linda may be short, blond, female, and a left coaster, I try not to hold those detriments against her.   ;)  ;D

Linda and I met, in person, for the first time, back in 2004, I think it was, at the Nashville convention.  I love her dearly, and you couldn't ask for a better, truer friend.  (Just don't tell her I said that ... That is just between you and I, OK?)

Chuck

Well, I read the post where the link led me and must say I need to try oxygen again. I don't know how oxygen can change from then to now but as you have said maybe I didn't do it right. Sounds like the key is to hyperventilate while sucking up the oxygen. Hyperventilating is not hard to do when you get a headache. I usually lift weights or do push-ups until I can't do them any longer. Just to get a few seconds relief from the pain, but you can't continually do push-ups and the weights get awful heavy after awhile. LOL.
I have another problem at the present. This doctor I've seen wants me to have more tests done, or no more prescriptions. The same tests I have had done over the last 30 years.  All my tests have come back negative. It's like going full circle just to end up right where we are today. That's a big medical expense, again, and to me not worth it just to get a precription. If I thought there was something wrong I'd pay any amount to get it fixed, but I just get Cluster Headaches. That's all. I'll figure out how to get some oxygen and give it another try. I have nothing to lose and everything to gain. Thanks.
Rod

Quote:

The same tests I have had done over the last 30 years.  All my tests have come back negative. It's like going full circle just to end up right where we are today.

All righty then....Not sure what your Insurance is,  or even if you have any.  I do not and more and more of us do not either.   Time for another Doctor?   30 yrs. of tests seems to be excessive if you have no more results than this.


What are the chances of finding a GOOD knowledgable Neuro in your area?  

Oh...by the way 02 Can change from then to now.  There is a whole lot more info now than there was 10 yrs. ago. For instance there are some Dr.s still prescribing the oxygen with a nasel cannula.  Or a regulator that only can go to 7 lpm.  This seems o.k. to them...but it is pre-historic to us here.


Linda

Rod, while you've had tests done over the last 30 years, as long as your tests weren't done last year, then you should probably have them done again. A test done 15 years ago needs to be repeated. What does he want, an MRI? Cat Scan? Neurological work up? Even though you still have CH, it's better to know whats in (and not) in your head. And safer, things change over the years.

In the meantime, there are ways of dealing with the shadows, and hits without a script for something. Will he at least give you a script for O2 in the meantime? Do you have insurance available? If not, there are other ways to get O2.

What meds have you taken in the past, and how long ago has it been? Let us know. We are not doctors, but can give you some information to help you. And print off the O2 info off to the left, and take it to your doc.

Let us know, we want to help.

Rod,

I thought that O2 didn't work either - until I learned to use it at really high flow rates.  I completely understood your comment that it's not hard to hyperventilate when you're getting hit - that ain't no joke. I used to jump on my bicycle and peddle like hell in the cold night air.

I bought a 25 lpm regulator online for about $75 and use a mask very much like the one sold here for about $25 - trust me it's the way to go. I have two regulators now and I'm about to drill one of them out to get more flow.

My insurance sucks when it comes to O2, so I use welding oxygen which many of us do. It's the identical product so the only variable is the tank.

Obviously, medical certified O2 is preferred, but not suffering needlessly is preferred even more.

I recently found a new neurologist because I moved. I told him " I know what you are going to say, but I use welding oxygen".

He cut me off and said "No you don't - more than half of my Cluster patients do also, and I'll leave it at that......"

Marc


Edit to add: That Purpleydog person has a really good point - things change. It wouldn't hurt to verify.

I really appreciate the suggestions of everyone. Honestly. Someone please tell me that they have had CH for more than 30 years. I believe I started to get these 33 years ago. I was about 25. Cat scans, MRIs, brain scans, I been to so many different doctors, specialists, I even went to a pain management place once. I guess to manage the pain. Can you do that?  Sometimes I try to concentrate on the pain or trip out on it but you all know that doesn't last very long. It's too intense. I've taken so many different meds I couldn't begin to name them all. To me it seems kind of funny that I had all these tests done, and they were many years ago and yes they were negative, then all of a sudden I now have a tumor and that's what's causing the headaches. I guess I had the headaches even before I had the tumor.
Lets say I have new tests done, and lets say there is something there. If an operation were performed do you think the headaches would go away? Or am I just going to have another pain in my wallet to go along with the one behind my eye? No one knows why we have CH and there is no cure! But there might be something that helps.
I'm sure most of the people who have found out they suffer from CH have done lots of research and testing. The Oxygen thing sounds like I should try it again but this time do it right. Medication doesn't work and I doubt if I spend more money on a bunch of tests it will end this long lived nightmare, so I'm ready to give Oxygen a shot.
I'm sorry if I sound super negative right now but I'm experiencing what you call a shadow after a big hit. Calling it a shadow is kind. Doesn't feel like a shadow but it sure beats a hit.
I Love all of you trying to help me with your knowledge and experience, and I'm sure everyone has something to share. I feel so sorry for anyone that gets the same pain that I do and I cannot comprehend someone that has it without a break.
I am going to get some Oxygen and shove it down my throat. I'll let you know the results.
Rod

Quote:

Lets say I have new tests done, and lets say there is something there. If an operation were performed do you think the headaches would go away?

This is where the knowledge of exactly where CH comes from is necessary.  if you are referring that surgery for a tumor is going to stop your CH...you may want to read here.

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Keep asking questions Rod.  We're still here to try to help.   ;)

Thank you Linda for the link. I have read that before, many many times. I think it may be how I found out about Cluster Headaches.
I reviewed other pages on the site and feel so bad for the people that are just starting to experience these things. What I read about the chronic sufferer, well, that just blows me away. I couldn't imagine getting these everyday for years. I have episodic CH and that is bad enough. How do you explain to someone they may have these for many years to come?
I haven't done very much to find some oxygen, maybe I deserve the pain. I'm praying that this cycle just goes away.
Rod

hmmm.


One thing we tell ALL of our episodic friends who come here is to prepare for worst and expect the best.  


Now go read that 02 link...get it in your house.  Gelegate it to your garage.  And then like the rest of us you'll bring it in to the bedroom where it will have a special place in your life for a while...and then back out to the garage.   But always handy.

Rod,

sounds to me like you need a big old Texas hug.... :) And a big shot of O2....

My doc put me on O2 so many years ago I can't even remember and I thought it was great - gave me something to do while my meds kicked in, but when I got into the high flow rate and now into the demand valve -- well - it's just a totally different ballgame...

Last July at convention I got hit during (of all things) an O2 meeting. Chuck was sitting next to me (with his wonderful O2 set-up) and he slapped his demand valve thingy on my face and within 3 minutes I was in heaven (NO PAIN). I fell in LOVE (oh not with him, but with his O2 set up) and never left his side the whole convention. I think Linda had a similar experience. She even swore not to say anything bad about him for a whole year... :)    Point:  O2 has changed a LOT over the years and it's wonderful now if used properly (for most of us).

How do those of us who are chronic handle it?  One day at a time and live life to the fullest in between hits.

Another thing you might try is RED BULL at the first sign of a hit. It aborts some hits for a lot of us. Or strong coffee. Frozen peas are a staple for most of us (or heat depending on your choice). There's lots of helpful hints on this board.

Welcome to Clusterville.

Hugs BD

P.S. Congrats Linda -- on your "non" virgin status...Seems only yesterday we were learning to do "quotes" ;) :-*

Rod,

How you holding up?

Well, I got my O2 prescription today. I've been having some good fortune and sleeping the last few nights but last night I got hit around 4 times and this morning I got hit again and it lasted a good 4 hours. I reached the point where I thought "why am I going through this?". So I went to the ER and there was a doctor there that actually knew something about CH. I live in a small town with not many doctors but this guy is good. He gave me a shot of Imitrex which actually worked and then we talked. I told him about chatting on the website and the things I've learned. He gave me a prescription for Oxygen and Imitrex injections, in case the Oxygen doesn't do it for me. He even told me about using Welders Oxygen, cheaper and easier to get.
I have the scrip for a non rebreather mask and an E tank. I guess that's good but I read someplace about a Clustermasx. Can anyone speak about this mask? Anyway I'm kind of excited to try out the O2 and I have the Imitrex as backup if it don't work. Thanks to all those who urged me on. Wish me luck!!
Rod

Rod wrote on Mar 15^th, 2009 at 7:57pm:

Someone please tell me that they have had CH for more than 30 years. I believe I started to get these 33 years ago. I was about 25.

You're not alone there, Rod.  I'm 55, and started these better than 40 years ago--when I was 13.  (I've been episodic the whole time. )  There are quite a few long-timers around here.

Glad to hear you got your prescription for 02.  The non-rebreather mask will work, but you may wish to consider a better mask.  Many of us have the O2Ptimask system from Lifegas.  See the link on the left.

They're also sold through the CH.com store (link to your left), which is much more convenient.

Best wishes,

George

Hi, Rod!

Boy, did you ever luck out to get an ER doctor that actually knows about clusters!  That is SO rare!

And then to have him give you the scripts for both Imitrex injections and oxygen!  I should give that man my first born male son!  (I wonder if he would take all four of my bratty kids?)

That is SO awesome!

When you get your call in to your provider, get several "E" tanks.  I consider an "E" tank as being a 3 hit tank.  Sometimes you get more, sometimes you get less.  It just depends on how stubborn the beast is.

Also, make sure they provide you with a regulator that goes to AT LEAST 15LPM.


Rod wrote on Mar 18^th, 2009 at 1:38am:

I read someplace about a Clustermasx. Can anyone speak about this mask?

The Clustermasx^TM was a set up that a fellow sufferer, across the pond, in England, named Ben, put together and sold.  He used parts readily available, on the market.  He then ran into regulatory problems in selling the mask, and had to quit providing it.

Fortunately, Life Gas (Linde) took up the idea, and now provide a mask, very similar to Ben's.  They named it the O2PTIMASK^TM.   Deej and Stephanie (the site owners) made arrangements with Life Gas to provide the mask in the CH.com store.  So just click on that tab, on the left side of your screen, or just go directly here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Good luck, buddy, and let us know how it works out!

Chuck

Rod,

I'm so happy to hear you encountered an ER Dr who was knowledgable on clusterheadaches.  As Chuck said, that is rare.  I'm even happier to hear you have a Rx for 02!  

Using 02 at a high flow rate has helped me tremendously.  I no longer live in fear of the next "attack" and can now go about my life like an (almost) normal person.

Let us know how your night went.  PF wishes to you.

Beth

Hi Rod,

I'm sorry I'm late in reading this.  Sorry for your pain but really glad you found us!  And I am so happy that you found a doc willing to listen and help you.

I have had CH for 28 years.... since I was ten.  They were very random as a child.   They became more predictable in my teens and now occur mostly in the Spring.  I have an occasional Fall cycle when I'm REALLY lucky.

I just wanted to stop by, introduce myself and welcome you!  You're not alone any more!


PF wishes!

Jeannie

I'm with Chuck on this one!....WOW!!!

You really did luck out with finding a doc like that!! That's a BIG rarety.

I'd write more but my son just ran to me with the onset of his CH. mst go

Talk Later

George, I'm so very sorry to hear you've had these things for that long. I'm sure you read about them being for younger people but you started real young. They are a bitch!!!

Chuck, as I've said I live in a small town and they don't have regulators that go up that high. I remember the woman that I talked to said the regulators she has go up to 8, she had migraines for a long time and understood what I was taking about, so I said I'll look around, check with my web site, and get another regilator. I read on here that everyone has said to make sure the regulator goes un to at least 15 and that's why I didn't get it.
The Imitrex worked for me yesterday and it was a blessing. So now I have 2 injections and 6 refills for backup ready for when and if I need them. I sure hope I can get a mask soon. Even the gal at the O2 place said that Oxygen has changed over the past few years. Thanks for the response and I'll be letting you know how it works.
Rod

Rod,

Take a look at this:

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and this:

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Marc, yes I read both of those posts. I just finished ordering an O2ptimask. Now all I need to do is find a regulator for the O2 tank. The O2 business said I could connect 2 bottles with 2 8liter regulators on them and it would give me the 15 I need. Sounds kind of funny. Any input on that kind of setup?
I'm going to ebay right now to look for a 15 regulator. I didn't take anything from the O2 place since I want to save the prescription untill I have the right parts all together. BTW, the links are Very good reading.
Rod

Well if you ran the 2 regulators at the same time, into the same bag, your flow rate would be 16 LPM. Don't see why it wouldn't work until you get the high flow regulator!

I've seem some incredibly creative contraptions on this site when people get desperate trying to build temporary masks! I'm forever amazed at peoples creativity! ;)

Joe

Rod, check your PM ... I found a regulator for you to buy.

Chuck

Guiseppi, Creativity is a good word. Desperation fits also. LOL

Guiseppi, Creativity is a good word. Desperation fits also. LOL ;D ;D   Yeah...thin line between the two huh? ;)

Joe

Has anyone done any experimenting with cutting the Imitrex injection from 6mg down to 3mg? The imitrex tip (at the left) sounds like one could get more injections out of a prescription. My prescription only allows refills every three days which means one day is going to have to be taken care of with O2 or something else. I bought a new coffee maker but that really doesn't help.  ;D

I haven't gotten my regulator yet either be hopefully it will get here next week, the same for the mask.

I had no Imitrex, no O2, no nothing the past day and was solely at the mercy of the beast which hit me 4 times yesterday and 5 times last night. There is no way to have a life with these things active.
My wife's birthday is coming up so I'll try and save at least one injection of Imitrex for that day and hope it works.
GOD grant PFDAN to you all,
Rod

Rod,
I read that IMITREX tip here a couple of episodes ago and tried it right away. The 1/3 rd dose didnt work for me but 1/2 would deal petty good, I call myself the Q tip junkie thats what I would use as a plunger. They now have a cheaper solution its sumatriptan but made by Sandoz comes in 0.5 ml vials with 6mg of medicine. Directions say inject the whole vial for a hit but iI have been using half of it, and having reief in on average 10 min. The phamacy will also sell you lodose insulin needles to go with it. The script comes 5 vials to a box, so 10 hits. Unfortunatly my insurance co considers the box of 5 should last me 15 days. The wankers.  Good luck and remeber there is an end in sight. At least I'm hoping and praying that there is. Have added all of y'all here to my prayers.
Jim

Rod,
Forgot, I wanted to remind you about the Red Bull energy drink. Just saw that here Last Sunday and gave it a try during my morning beast appointment. Take it at first sign so far works great. 10-20 min and not escalating to badly. Find the stuff at convieniance stores and maybe the supermarket.
Jim

Hey Jim, thanks for the info. The insurance companies don't have a clue. They're only interested in what it costs. What if you have 5 hits in one day? I sure hope the Imitrex keeps on working because I feel it will prevent a hit for at least a few hours.
You mentioned you use half dose and a q-tip, when you have the solution and needle out of it's case do you just insert the needle manually then push the solution in with the q-tip? That's the only way I can figure out how to do it.
Might have to give it a try, but going to have the other half ready in case.  ;)
Rod

Exactly Rod. First I take the label off the bottle and mark it with a sharpie at the 1/2 line. I just kinda eye ball it. Then I used the plastic kind of Qtip with the fuz pulled off. Kinda hold the syerete s/p ? with your thumb and ring finger stab yourself then push with the index finger. I'm not sure I inject right though. I never pinch the skin and all that crap I just stab the muscle in the upper arm and squirt it in. figure the muscle has more blood vesels than fat so should be quicker acting. hell id main line it i thought i could get away with it. ;D
Jim

Rod, I have had several heart attacks, and I am NOT suppose to take Imitrex (but I do).  (BTW: This is NOT recommended for those with heart problems!  Just because I do it, does not mean that YOU can get away with doing it too!)

I use the half dose when I am forced to take a shot (after the oxygen fails to get it aborted).

With my finger nail I peel a strip of the paper off, stab myself in the thigh, and then use the Q-tip to inject half of it.  Then I put the syringe back into its holder, and take the little case out and spin it around so that the full syringe is on the outside.  Next hit, I do the same thing.

Now I have a kit with two half loads.  When I get another hit, I just use the auto injector and take it like it was fresh from the factory!  

In other words, I take two shots using the Q-tip, and two using the injector.

Doing the half shots, I do not get the chest discomfort that a full shot gives me, I get more hits aborted with each pack, and I never suffer from the rebounds!  Sounds like a win win situation to me!

Now, remember!!!  I ONLY use the imitrex AFTER I have tried to abort, using the oxygen!  Well, I take that back.  I also use it when I am flying, and don't have/can't use oxygen.

Chuck

Thanks a million Chuck. I'm still using the Imitrex since my supplies, mask and regulator, haven't arrived yet. I sure do hope O2 works for me. In any event I will keep the O2 items handy. I had a remission of 2 years this time so I never know when I'll need it again. I'll definitely let you know when I get the O2 items and if the O2 works.
Rod

Rod--Yep, I'm another person whose clusters started over 40 years ago.  

Barbara