Just wanted to introduce myself, my name is Larry and I live in Shillington PA.  Im a 9 year Police Officer about 30 min outside of Phila.

A friend (also a member of this site) told me about this forum when he saw that I had been complaining of odd headaches on my facebook page (yeah, I put it all out there).

I have had these repeatative days of persistant "headaches" a few times in the past 2 or 3 years, and I always brushed them off to allergies, or spending to much time working on cars (I hang out in a garage on my time off, welding, grinding, painting etc) until the past two days.

I had just returned from a beautiful 3 weeks of doing as little as possible in Florida. My first 3 shifts were FRI SAT and SUNDAY (right now) midnight shifts. Thats 7pm to 7am...  After finishing my first shift, completly exhausted on Sat morning, I got home, showered and passed out in bed. ABout 2 hours later it felt like my eyeball was gonna explode.  Then it felt like it was being stabbed from the inside out, then the right side of my nasal cavity started having the same pain... I went downstairs, took some naproxin and headed back up to bed.... ALL OF THE SUDDEN it was like someone was trying to cut the right side of my skull out, over the top of my head to the base of my skull.  I WAS WORRIED...  In the past these issues would happen during the day time hours and again I brushed it off to dirty enviornment.  Now I was worried I was feeling myself having an anurism...

I got back out of bed, jumped in the shower and with HOT water used the handheld head to spray the pained areas... it felt like it helped a bit, but by the time I ran out of hot water, the pain was still there.  I managed to fight my way through it and fell asleep about 2 hours after it had initially started....

Sat nite I went to work again, got dun Sunday morning and headed home. The entire shift I could feel the lingering pain of where the previous "headache" was.... it worried me, but what was I gonna do, I hoped that I could get some sleep because the episode from the night before had kicked my butt.

Off to shower, off to bed by 8am... and at 930, the STABBER was back trying to kill my head from the inside out.... Same routine, meds, shower, fell back to sleep only this time... it came back around 12 noon.  I couldnt believe it.... more meds, another shower, and I wrapped my head tight (which actually helped) with my wet shower towel, and somehow managed to fall back to sleep.....

My wonderfull G/F did some research for me while I did manage to sleep and had it all ready for me to read when I woke... CLUSTER HEADACHES... wtf is this I said.... I read, and read, and read and it was ME!  At least now my issue had a name, I had a slight grasp on to what was going on......

Finally, here I am at work, hoping..... HOPING I will be able to get some sleep when I finish up work at 7am... I already took one prednisone, and plan on taking another when I get home..... ANYTHING!!!! ANYTHING to let me get some sleep.

I know that was very long winded, but after all this was my introduction, and how I ended up here. By no means am I complaining for sympathy, I have seen that many of you have been dealing with this for an extremly longggggggggg time, and all I can say is.... I feel your pain.

My name is Larry, and if there is anything I can do for you or help you out with when it comes to understanding cops or the law... I will do my best, PM me or write me at popo8@comcast.net

Thanks for having me....

Hi Larry, I'm sorry you had to come looking for us, but you've found the right place. We all know from experience, either as supporters or from our own encounters with the beast what it is like.

You've not mentioned seeing any doctors about this, which you should do as even though you are sure that the headaches are cluster headaches it really makes a lot of sense to get this confirmed by a doctor, preferably a good neurologist who specialises in headaches. Most of us will have gone down the route of multiple tests to exclude a whole number of other possible causes.

Right now you really want to start reading up on everything here as there is a whole load of useful info and there are people here who are very, very knowledgeable and really helpful. Ask away with all your questions which I bet you have (I know I did when I found this place).

Don't overdo the predenisone. It can be great for short term use whilst other medication kicks in, but it has some fun side affects so you don't want to be on it long term. There are multiple different medications that you can use in consultation with your doctor. You'll find lots of posts here where people discuss them.

THANK YOU, I appreciate the advice. I do intend to speak with a doctor. FORTUNATLY or UNFORTUNATLY (depends on how you look at it) My uncle is my primary, so I have to go see him first before I can get any referrals for a neurologist, etc.   I want to try to read up and print out what I need to show him since I understand that most family doctors don't see the writing on the wall with this issue.   Again, I have that FINGERS CROSSED mentality, that next time I go to bed it wont happen... (I'm sure I'm not the first person to think like that) but after all, its happened before and gone away right.....lol. I'm just making light of it because honestly its kicking my ass..... Thank You again, and I will be reading, researching and asking.....

Well, wish me luck, Im staying awake just a little longer to see what happens if I am up beyond the time it normally bites, then going to sleep.... prednisone...CHECK!     muscle relaxer.....CHECK!!!! :'(

You have an excellent headache clinic in Philly--surely, your uncle will know about it.

Don't waste time with a neurologist who is not a headache specialist. Our site is loaded with sad stories of receiving poor treatment from doc who lack both training and experience with complex headache disorders--it's really more complicated than,  "take an Advil."

Ok, thank you, Again I have been reading and reading and printing stuff out to show my uncle so we dont waste any time getting me where I need to be....

BTW, I took the CH QUIZ.....
There have been so many questions on the message board from people asking if the headaches they suffer from are clusters or not I decided to build this quiz.

It will give you a quick, generic idea whether you may suffer from cluster headaches or not.

#1) Do your headaches normally last LESS THAN 15 minutes?
Yes No

#2) Do your headaches normally last MORE THAN 4 hours?
Yes No

#3) Do your headaches normally switch sides from day to day or during a headache?
Yes No

#4) When you have a headache, do you normally seek a quiet, dark place?
Yes No

#5) When you have a headache, do you normally want to be around other people?
Yes No

#6) When you have a headache, can you normally lay down and be motionless?
Yes No

#7) When you have a headache, can you normally go to sleep to make it go away?
Yes No

#8) When you have a headache, do you normally experience nausea?
Yes No

#9) Are your headaches always on the same side of your head?
Yes No

#10) Do your headaches normally wake you up from a sound sleep?
Yes No

#11) Do your headaches normally occur at the same time of the year and same times each day?
Yes No

#12) Do you normally experience a stuffy nostril on the same side of the face as the pain?
Yes No

#13) Do you normally experience a "droopy" eyelid on the same side of the face as the pain?
Yes No

#14) Do you normally go from totally pain free to totally debilitated in 5-10 minutes?
Yes No

#15) Do you normally go from totally debilitated to totally pain free in 5-10 minutes?
Yes No

#16) When you have a headache, do you walk, pace, bash your head, thrash, scream?
Yes No



Evaluation

Questions 1-8 are not normally associated with cluster headaches. If you answered "Yes" to a few of these questions, you probably don't suffer from cluster headaches. Please do your research and see a doctor!

Questions 9-16 are normally associated with cluster headaches. If you answered "Yes" to most of these questions, you may suffer from cluster headaches. Please do your research and see a doctor!

Just to let you know, you can stay up for awhile but you will
need to sleep and about 2 hrs after falling asleep that mother
will be waking you, it's the game we all play sleepless nights
I think it makes it worse, but I think we have all done it.  Just
sleep says the monster, Brain no sleep wait for pain then
sleep.  Well you get to the Dr. and get the meds started man.
cause being a cop, you need your sleep just for your own
safety.  Hope you find your solution swiftly.

Peace and luck be with you

Have you read the O2 tab? It's the one thing you can do now that will abort your HA in 5 to 20 minutes before you even see the doc. Doc will want to do a ct scan to rule out an aneurysm or tumor, but O2 won't aggravate either, so try it now while you're waiting to see  your doc. Read the tab to the left and if you want it fast e-mail me your address and I'll send you a CH Care Package that will have you breathing O2 by Wednesday.

e-mail is jhedges@matteicomp.com

Welcome to the board, I snuck through a 30 year LE career with CH, Lord knows it takes a lot of planning and some understanidng beat partners and shift supervisors. A 2 pronged approach is what worked best for me.

1: A prevent med. A med you take daily while in cycle....getting headaches.....with the idea being to reduce the number and the intensity of your attacks. I use lithium at 1200 mg a day will block up to 60-70% of my attacks.Verapamil is a common first line prevent, Topomax also has a loyal following but is called Dopeymax by many as a side effect can be that it makes you loopy.

As fas as lithium don't let the name scare you! The doses we take it at are fairly low. If I didn't tell my beat buddies I was on it they wouldn't know it. (of course as a courtesy I always told them.)

Prednisone is called a transitional medication. It provides 100% releif for me at doses as low as 30 mg a day. But as mentioned earlier, can cause some horrific permanent damage to joints and organs if taken long term. Most do a 10-14 day taper while their prevent builds up in their system.

2: An abortive strategy. I use oxygen as my first line abort as I can stop an attack dead in its tracks in less then 10 mnutes, average time is 6-8. I used to keep an E-tank in my cruiser when I was working to beat the beast down. Read the oxygen info link on the left as it must be used correctly or it will not work.

Imitrex injectables work really well for me and for many but  are expensive. I use them for the few times the 02 doesn't work, or when I'm out and about and get caught away from my 02. The stat dose will fight in your shirt pocket so if you end up at a scene you can't break from, you can inject and do it so no one even notices.

For now. Go to a vitamin or health food store and get a bottle of melatonin, an over the counter sleep aid. start with 9 mg 30 minutes before going to sleep. You may have to increase the dose but give it several days to work. For many it helps to avoid those attacks you're getting when you hit REM sleep, 90 minutes or so after falling asleep.

Get a 4 pack of Red Bull, Monster, any energy drink containing the combination of caffeine and taurine. Chug one down at the first sign of a hit. Many can abort or at least really reduce an attack that way. I drink one down as I start my oxygen, provides a good 1-2 punch.

Avoid alcohol as it's a common trigger when in cycle. Off cycle it doesn't bother me at all. (so no choir parties while on cycle!)

Read like a mad man. Knowledge is your best ally in this fight. You've got several retired and active LE who deal with CH on this board, so the good news is it's possible. Damn glad you found us. Be safe out there.

Joe

glad ya made it larry,its unfortunate you have to meet all these great people under these circumstances but they will be alot of help,it can be a little overwhelming at first but just be patient and youll get through it,at least now you can talk to people that wont just tell you to take some excedrin;) its just so hard for most to comprehend what we are dealing with,well just so everybody knows larry is a real standup guy, hes my brother from another motha so take good care of him 8-)

Hi Larry,

Welcome to the site - not glad you have to be here, but glad you found us since you do!  I'm also a Philadelphian - currently living in Boothwyn, but from Downingtown in Chester County.  I'm a NICU nurse in Philly.  If you want to chat with someone else in the area (I know you already have a friend with CH here!), let me know!!  I go to Jefferson Headache Center - been getting clusters for nearly 7 years now, and have been going to the headache center for nearly 10 years (was going for a different headache problem before the clusters started).

PF wishes,
Carrie :)

jayhedges wrote on Jul 19^th, 2010 at 9:46am:

Have you read the O2 tab? It's the one thing you can do now that will abort your HA in 5 to 20 minutes before you even see the doc. Doc will want to do a ct scan to rule out an aneurysm or tumor, but O2 won't aggravate either, so try it now while you're waiting to see  your doc. Read the tab to the left and if you want it fast e-mail me your address and I'll send you a CH Care Package that will have you breathing O2 by Wednesday.

Boski AND Jay, Im looking for the tab to the "left" but Im not finding any tabs on the left.  Sorry, Im just flustered when it comes to reading everything on here, and its nearly depressing to me.  My eyes go tired and my brain scrambles as I try looking aroung on here and I end up taking a break for I toss the computer across the room....   Be patient and as soon as I figure out what the hell Im doing on here, I will be in contact.....

THANK YOU

jayhedges wrote on Jul 19^th, 2010 at 9:47am:

e-mail is jhedges@matteicomp.com

Email sent.  TY.

Larry,

Along the left hand side of the webpage is a list of things and 3 of them are highlighted in yellow.  Nearly midway down is the "oxygen info" yellow tab.  But in case your page isn't loading properly, here is the link that you would get by clicking on that: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Deep breaths....

Carrie

Guiseppi wrote on Jul 19^th, 2010 at 10:49am:

Welcome to the board, I snuck through a 30 year LE career with CH, Lord knows it takes a lot of planning and some understanidng beat partners and shift supervisors. A 2 pronged approach is what worked best for me. 1: A prevent med. A med you take daily while in cycle....getting headaches.....with the idea being to reduce the number and the intensity of your attacks. I use lithium at 1200 mg a day will block up to 60-70% of my attacks.Verapamil is a common first line prevent, Topomax also has a loyal following but is called Dopeymax by many as a side effect can be that it makes you loopy. As fas as lithium don't let the name scare you! The doses we take it at are fairly low. If I didn't tell my beat buddies I was on it they wouldn't know it. (of course as a courtesy I always told them.) Prednisone is called a transitional medication. It provides 100% releif for me at doses as low as 30 mg a day. But as mentioned earlier, can cause some horrific permanent damage to joints and organs if taken long term. Most do a 10-14 day taper while their prevent builds up in their system. 2: An abortive strategy. I use oxygen as my first line abort as I can stop an attack dead in its tracks in less then 10 mnutes, average time is 6-8. I used to keep an E-tank in my cruiser when I was working to beat the beast down. Read the oxygen info link on the left as it must be used correctly or it will not work. Imitrex injectables work really well for me and for many but  are expensive. I use them for the few times the 02 doesn't work, or when I'm out and about and get caught away from my 02. The stat dose will fight in your shirt pocket so if you end up at a scene you can't break from, you can inject and do it so no one even notices. For now. Go to a vitamin or health food store and get a bottle of melatonin, an over the counter sleep aid. start with 9 mg 30 minutes before going to sleep. You may have to increase the dose but give it several days to work. For many it helps to avoid those attacks you're getting when you hit REM sleep, 90 minutes or so after falling asleep. Get a 4 pack of Red Bull, Monster, any energy drink containing the combination of caffeine and taurine. Chug one down at the first sign of a hit. Many can abort or at least really reduce an attack that way. I drink one down as I start my oxygen, provides a good 1-2 punch. Avoid alcohol as it's a common trigger when in cycle. Off cycle it doesn't bother me at all. (so no choir parties while on cycle!) Read like a mad man. Knowledge is your best ally in this fight. You've got several retired and active LE who deal with CH on this board, so the good news is it's possible. Damn glad you found us. Be safe out there. Joe

Well its definitley a pleasure meeting you, and I will surely be reaching out for advice from you regarding coping with this and the job.  I have the typical COP MENTALITY of being invincible, and now I have to deal with the fact that something is kicking  my ass....


Its realy a shock to the system, a depressing shock when you have to come off that high horse that I have been riding... 

Again if you dont mind, I may reach out to you just to cope with CH and the JOB and make them work and see some of the ways you did it.....

TarHeel-blues wrote on Jul 19^th, 2010 at 6:27pm:

glad ya made it larry,its unfortunate you have to meet all these great people under these circumstances but they will be alot of help,it can be a little overwhelming at first but just be patient and youll get through it,at least now you can talk to people that wont just tell you to take some excedrin;) its just so hard for most to comprehend what we are dealing with,well just so everybody knows larry is a real standup guy, hes my brother from another motha so take good care of him 8-)

THANK YOU BROTHA... I appreciate you pointing me in the dirrection of this site, and again, the fact that you divuldged your issue to me, for no more reason than to help me means alot. 

THANK YOU !!!!!

Lizzie2 wrote on Jul 19^th, 2010 at 6:42pm:

Hi Larry, Welcome to the site - not glad you have to be here, but glad you found us since you do!  I'm also a Philadelphian - currently living in Boothwyn, but from Downingtown in Chester County.  I'm a NICU nurse in Philly.  If you want to chat with someone else in the area (I know you already have a friend with CH here!), let me know!!  I go to Jefferson Headache Center - been getting clusters for nearly 7 years now, and have been going to the headache center for nearly 10 years (was going for a different headache problem before the clusters started). PF wishes, Carrie :)

I appreciate it and thankyou for allowing me the opportunity to reach out locally if necessary....  I also wanted to thank you for posting the link for the tab.... Im a computer idiot!!!!

THANK YOU!

Not a problem!! Cops and nurses get along real well - I'm happy to help you with whatever you need in the area!!  My fiance and I are obviously down near Wilmington, but there are others in the area too, and we're only ever a message away!! :)

BTW, I wanted to to give everyone an update (I know I have told some of you while PM'n...

Before bed, I took a 20mg tab of prednisone and flexoral muscle relaxer and I got 8-9 hours of strait sleep!!!!   I was stoked to wake up on my own. I understand its not a perminent fix, but it felt good to sleep....

If anyone wants to be a FB friend with me (Im not being juvenile, just that the IM'n abilities are better) find me here....

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

Welcome to the board!  Now that you're here I'm confident it's just a matter of time (and reading) until you are kicking this beasty to the curb  ;)

Great to hear you got a good nights sleep - I hope it lasts!!!


Wishin you all the best,

Kate

Hello Larry

Welcome but sorry you have to be here .
I've not got allot to offer that hasn't already been said but do try the energy drinks they work well and are very straight away.

Imitrex injectables are my best friend as they have worked brilliantly for me but I know that they are expensive over there and insurance companies seem to like to limit how many you can get in a month  >:( I think this is wrong , it saddens me when I here about people who can't get the meds they need cos insurance wont pay .

any way good luck , hop you find relief soon .

God bless

Nigel

edit :- BTW I would say yes to question 4 being as I get extreamly photosensitive during a hit , but then every one seems to have something differant with this . :-?

Welcome to the board and glad you found us, but sorry you had too.

PA here as well Wilkes Barre area.

This is a great place to learn more about your condition, read read read and ask all your questions if we can't answer them we'll help find someone who will or send you packing back to your Doc  ;D

PF Wishes to you and Be safe out there!

Headache Boy uk wrote on Jul 19^th, 2010 at 7:48pm:

BTW I would say yes to question 4 being as I get extreamly photosensitive during a hit , but then every one seems to have something differant with this . :-?

ditto!  I get this really bad - although I notice it more  the day after a hit - I get hit at night so apart from venturing into the kitchen to get the hot water bottle sorted - I'm pretty much coping in dim lighting.

Bright light during a hit is like some one shoving a kitchen knife in to me right eye on top of the pain of the hit   to the point of even waring sunglasses one time when I got hit driving home from work one night with no abortives handy

Now I ware sunglasses (has to be Polaroid ) all the time when I'm out side , I'm out of cycle at the moment but to much light will bring on strong shadows.

Thank you all for the words of welcome and the well wishes.  A friend of mine told me this site was a very mature, very supportive site....  and Im glad he was right.

So I think Im getting real lucky. Decided to experiment with either one or the other PREDNISONE or MUSCLE RELAXER, and still no "headache"

Not sure if this is normal , or if my attack was just that short, but the day after my 2 days of attacks I decided to hit 20mg of prednisone and a muscle relaxer and no issue the following nite. Now I know some of you have said Prednisone is the MIRACLE drug, but only a temp solution, so i decided to only take a muscle relaxer last nite (nite for me most of you call DAYTIME) and again no issue.

Is it just a fluke????  wtf is up? Im so confused.....  I wanna move away and leave the CH behind....

POPO8 wrote on Jul 21^st, 2010 at 5:00am:

Is it just a fluke????  wtf is up? Im so confused.....  I wanna move away and leave the CH behind....

Could be your cycle is over.(?)
Also one thing you will learn about CH it changes constantly 1 cycle you have could be short and not so sweet, the next could be long and horrific.  Once you think you have it pegged it changes on you.

JustNotRight wrote on Jul 21^st, 2010 at 5:08am:

POPO8 wrote on Jul 21st, 2010 at 5:00am: Is it just a fluke????  wtf is up? Im so confused.....  I wanna move away and leave the CH behind.... Could be your cycle is over.(?) Also one thing you will learn about CH it changes constantly 1 cycle you have could be short and not so sweet, the next could be long and horrific.  Once you think you have it pegged it changes on you.

ugh... thank you.  Not exactly what I wanted to hear.  But I expected it. 

Ok, so today I learned that alcohol (captain morgan) is a definite trigger to give me a CH in the midde of the day.... >:( >:( >:( >:(

While not a universal trigger.....alcohol is extremely common. For me within 15 minutes of drinking I'll get hit. :-/

Joe

Not all alcohol is off the menu for everyone when in cycle.
Some find that only certain types like lager, red wine and spirits set a ch off but are ok with white wine and Stout.

But it is not much fun finding out which one you can and can't drink if you can drink at all . There is at least one thread on this subject one the board I'll see if i can find it and post a link.

God bless

Nigel

couldn't find the thread I was looking for but I did find this quote from Bob Johnson


Quote:

We bat this question around here from time to time but nothing seems to stick except for alcohol, and that  when you are in an active period. The single exception to alcohol was a study out of Europe, some years ago, which identified distilled spirits and red wine as triggers--but not white wine. A couple of folks, here, have confirmed this has been their experience.

That was from a thread on food triggers but I'm shore there's some other stuff on here on the subject .

God bless

Nigel

[edit]Cos I cant spell [/edit]

POPO8 wrote on Jul 21^st, 2010 at 10:24pm:

Ok, so today I learned that alcohol (captain morgan) is a definite trigger to give me a CH in the midde of the day.... >:( >:( >:( >:(

I usually do a beer test 3 days after being pain free.

Ok, so I figured I would just keep my updates and stuff in my intro thread.... rather than be all over the place on the site.

Went to the docs today..... of course, I told him whats going on, showed him printouts, explained what Ive learned and some of the tricks and treatments that people have used and.......

he takes my blood pressure, tells me its fine (lil high but fine) then gives me a script to have bloodwork done 2morrow....  he also has one of the girls get my information to set up a head MRI.....   He does not like the prednisone usse, and my suggestion to use O2, is shot down because he says "thats for realy severe cases"....  I know I may not have it the worst of anyone on here, but let me tell you (as Im sure you all know) when its happening... it IS REALY SEVERE CASES!!!!...

I leave, I come home and what do you know.... I get an attack while awake.... 60mgs of prednisone and a hot hot hot shower and Im able to nap the rest of it away..... oh well, here goes that hospital and Dr BS that I hate, waiting and making appointments just to continue and wait and suffer till we finaly get to what I have been fortunate to discover already.....


Ok thats my rant.. and not much I can do bout it.... so I live and I deal.... FK IT!

go to a pain specialist, this man you've visited has no idea. if it's CH an mri is useless- if- ;unfortunately i  have absolute no idea of the us-health-system; you are insured and your insurance needs proof and WILL cover the costs you'll need a functional PET. go to a specialist! it's a waste of time, and i really hope for you it's not CH,
head up!

Quote:

i  have absolute no idea of the us-health-system;

Yes, you do not.

feneq wrote on Jul 27^th, 2010 at 9:35pm:

go to a pain specialist, this man you've visited has no idea. if it's CH an mri is useless- if- ;unfortunately i  have absolute no idea of the us-health-system; you are insured and your insurance needs proof and WILL cover the costs you'll need a functional PET. go to a specialist! it's a waste of time, and i really hope for you it's not CH, head up!

I'm thinking the MRI was ordered to make sure that there is no other reason for the HAs - i.e. tumor, aneurysm, etc.  It is not meant to treat the HAs. 

As for a functional PET scan, generally in the US these are ordered and covered by insurance for cases where primary or metastatic cancer is suspected or for mapping of functional areas in patients who are planning brain surgery for various reasons.  Very rarely, it may be used for dementia studies or similar - very very rarely. 
I have not heard of one being ordered and covered for initial evaluation of a headache.

And, POPO8, I'm so sorry you've been having so much problem getting O2 - that's just ridiculous!  Keep at it and find a another doc if you need - you can even use welding O2 - look around the board, and you'll find threads about this.  Good luck and keep us up on how you're doing!!!

Well I went and got my blood drawn this morning.... tick.... tock..... tick..... tock..... tick...... tock.....

My advice - search actively to find a doc who will get you going on O2. I love Apria as a supplier and maybe you can call their local branch and find out which doctors they recommend.

I keep a big tank at home for the night and have about 10 portable tanks for the day with a nice carry case. Makes it real easy. Went to the movies the other night, felt a headache coming on, found a quiet place outside away from the smokers and got going on the oxygen. 10 minutes later I am smiling again.

Finding the right med to stop the cycle has always been a pain for me (no pun intended) but I don't know how I could survive without my O2. Don't let the doctor tell you otherwise.

Well, my problem is a little more complex than that.  See, my UNCLE is my Dr.... so I wouldnt feel right disrespecting him either if I go ahead and try to find another dr.  yes, I know, that means I have to suffer... but smart or not, sometimes that is what I chose to do, to keep Family happy.

BTW, Had another killer ache today... like two in a row when I was driving home from work and about half an hour after I was finally able to drug myself to sleep.

Im going to go to the AIRGAS company and talk to them about the 02 that they carry and see if I will be able to undermine the medical practice and get myself some relief...


BTW, If I can get my hands on a Nitrous Oxide bottle  (thats not been used of course) would that work?

yeah - I used my uncle as my doc at first too.....tough call. Even though he is a neurologist, he wasn't all that familiar with cluster headaches. It makes a difference.

Maybe show him the research on this site. Tell him that the oxygen at a high-flow rate is absolutely standard treatment to abort the headaches. Not radical at all.

good luck!

POPO8 wrote on Jul 29^th, 2010 at 8:37pm:

BTW, If I can get my hands on a Nitrous Oxide bottle  (thats not been used of course) would that work?

I doubt any supplier would fill it with oxygen.  Besides that, unless it's bigger than the nitrous bottles I've seen (I'm thinking of the ones you put in the trunk of high-performance automobiles) it'd be way too small to do you any particular good.

Best,

George

POPO8 wrote on Jul 27^th, 2010 at 9:21pm:

Ok, so I figured I would just keep my updates and stuff in my intro thread.... rather than be all over the place on the site. Went to the docs today..... of course, I told him whats going on, showed him printouts, explained what Ive learned and some of the tricks and treatments that people have used and....... he takes my blood pressure, tells me its fine (lil high but fine) then gives me a script to have bloodwork done 2morrow....  he also has one of the girls get my information to set up a head MRI.....   He does not like the prednisone usse, and my suggestion to use O2, is shot down because he says "thats for realy severe cases"....  I know I may not have it the worst of anyone on here, but let me tell you (as Im sure you all know) when its happening... it IS REALY SEVERE CASES!!!!... I leave, I come home and what do you know.... I get an attack while awake.... 60mgs of prednisone and a hot hot hot shower and Im able to nap the rest of it away..... oh well, here goes that hospital and Dr BS that I hate, waiting and making appointments just to continue and wait and suffer till we finaly get to what I have been fortunate to discover already..... Ok thats my rant.. and not much I can do bout it.... so I live and I deal.... FK IT!

That right there is when I walk out, family or not.  Oxygen is good for any level of cluster, whether you're getting shadows or Kip 10's.  I know some GP's and neuros may have little to no knowledge of clusters, but the ones who are willing to work with you and learn are ones to stick with.  The ones who are experienced the are the best, but the ones who think they know what we're feeling are the ones to dump.  I've only had two neuros.  The first one was a "know it all" type.  He laughed when I said I talk to people on these boards and rolled his eyes when I told him about the clusterbuster approach.  I pretty much said, "thank you very little" on my way out.  My current neuro listens and as he is no pro on oxygen therapy, he wanted to see what others use as far as flow goes.  He wrote the script, I got the O2 and walked out happy.  Last time I visited him, he asked how the rivea corymbosa seeds are going because he supports alternative therapies.  I just got lucky I guess.  I know  you're not far from Allentown and if you're willing to make the trip up this way, I can give you my neuros info in a PM.

Best of luck!

Chad

I know it's tough with family....but DAMNIT!!!!! >:( Depriving a CH'er of oxygen is like denying insulin to a diabetic. It's cruel and heartless. Please print this out and take it to your uncle. Tell him I mean no disrespect, but he is denying you relief from your suffering and deliberately causing you harm....in voilation of the oath he took. 32 year of CH and NOTHING has done more to provide a normal life for me then oxygen. I'm from a family of 14 brothers and sisters, we now number well over 150, so I am very sympathetic to family dynamics......this is bigger then that. Good luck!

Joe

I have to agree with Joe, I must say.
Generally, this is why it is very frowned upon to be the medical provider to your family - even extended family such as a nephew.  Not unethical exactly, but very frowned upon.

I mean (and perhaps you would) but would you feel comfortable discussing your rectal bleeding or your erectile dysfunction with your uncle?  Or what about your concerns that you're gay or have violent fantasies?  Again, not that you do, but you need to feel able to talk about those things with your doctor if you should need to and feel no judgment or conflict of interest.

Just saying, but unless your uncle is the only provider in town, you owe it to yourself to make sure you're getting the best care possible...

Peter B wrote on Jul 29^th, 2010 at 10:00pm:

yeah - I used my uncle as my doc at first too.....tough call. Even though he is a neurologist, he wasn't all that familiar with cluster headaches. It makes a difference. Maybe show him the research on this site. Tell him that the oxygen at a high-flow rate is absolutely standard treatment to abort the headaches. Not radical at all. good luck!

I am trying to show and explain what i am learning.  I am also trying to be patient , understanding the fact that people who have never dealt with this realy have NO idea.  My girlfriend asked me today what it feels like, and it does not seem to do it justice to simply say that my eye feels like it wants to pop out of the front of my face and the right side of my skull  wants to explode.... I explained it like this.

If I lay in the driveway, and you pull my truck up to the back of my skull till its touching, then simply let of the brakes so that the truck wants to move forward but my head is its resistance... yet it still slowly progresses forward trying to squeeze my head like a zit, and eveything wants to pop  right out of my right eye socket......

THATS the best analogy I could give.....

George wrote on Jul 30^th, 2010 at 1:31am:

POPO8 wrote on Jul 29th, 2010 at 8:37pm: BTW, If I can get my hands on a Nitrous Oxide bottle  (thats not been used of course) would that work? I doubt any supplier would fill it with oxygen.  Besides that, unless it's bigger than the nitrous bottles I've seen (I'm thinking of the ones you put in the trunk of high-performance automobiles) it'd be way too small to do you any particular good. Best, George

well the Nitrous oxide tanks are 5,10 , or 20 lbs that i have access to.  And I have every fitting available for whatever my hook up need is.  Im just getting a lil desperate and trying to find ways around to medicate myself with the o2....   AIRGAS is a supplier of alot of air tank fills, Im just not sure if the O2 that they have is a medical grade that would suffice for me to injest......

feneq wrote on Jul 27^th, 2010 at 9:35pm:

go to a pain specialist, this man you've visited has no idea. if it's CH an mri is useless- if- ;unfortunately i  have absolute no idea of the us-health-system; you are insured and your insurance needs proof and WILL cover the costs you'll need a functional PET. go to a specialist! it's a waste of time, and i really hope for you it's not CH, head up!

I cant go to a specialist without a referal... I cant get a referal without jumping though the hoops of all of the other tests first.......insurance is a bitch.

Chad wrote on Jul 30^th, 2010 at 7:24am:

POPO8 wrote on Jul 27th, 2010 at 9:21pm: Ok, so I figured I would just keep my updates and stuff in my intro thread.... rather than be all over the place on the site. Went to the docs today..... of course, I told him whats going on, showed him printouts, explained what Ive learned and some of the tricks and treatments that people have used and....... he takes my blood pressure, tells me its fine (lil high but fine) then gives me a script to have bloodwork done 2morrow....  he also has one of the girls get my information to set up a head MRI.....   He does not like the prednisone usse, and my suggestion to use O2, is shot down because he says "thats for realy severe cases"....  I know I may not have it the worst of anyone on here, but let me tell you (as Im sure you all know) when its happening... it IS REALY SEVERE CASES!!!!... I leave, I come home and what do you know.... I get an attack while awake.... 60mgs of prednisone and a hot hot hot shower and Im able to nap the rest of it away..... oh well, here goes that hospital and Dr BS that I hate, waiting and making appointments just to continue and wait and suffer till we finaly get to what I have been fortunate to discover already..... Ok thats my rant.. and not much I can do bout it.... so I live and I deal.... FK IT! That right there is when I walk out, family or not.  Oxygen is good for any level of cluster, whether you're getting shadows or Kip 10's.  I know some GP's and neuros may have little to no knowledge of clusters, but the ones who are willing to work with you and learn are ones to stick with.  The ones who are experienced the are the best, but the ones who think they know what we're feeling are the ones to dump.  I've only had two neuros.  The first one was a "know it all" type.  He laughed when I said I talk to people on these boards and rolled his eyes when I told him about the clusterbuster approach.  I pretty much said, "thank you very little" on my way out.  My current neuro listens and as he is no pro on oxygen therapy, he wanted to see what others use as far as flow goes.  He wrote the script, I got the O2 and walked out happy.  Last time I visited him, he asked how the rivea corymbosa seeds are going because he supports alternative therapies.  I just got lucky I guess.  I know  you're not far from Allentown and if you're willing to make the trip up this way, I can give you my neuros info in a PM. Best of luck! Chad

Hit me up wth that PM info, maybe I can put my uncle in contact with him.... for a little bit of revalation on the situation.     And as much as I would love to have what I need now, FAMILY is first, even if it means I gotta hurt..... its just the way it is.

Guiseppi wrote on Jul 30^th, 2010 at 10:51am:

I know it's tough with family....but DAMNIT!!!!! >:( Depriving a CH'er of oxygen is like denying insulin to a diabetic. It's cruel and heartless. Please print this out and take it to your uncle. Tell him I mean no disrespect, but he is denying you relief from your suffering and deliberately causing you harm....in voilation of the oath he took. 32 year of CH and NOTHING has done more to provide a normal life for me then oxygen. I'm from a family of 14 brothers and sisters, we now number well over 150, so I am very sympathetic to family dynamics......this is bigger then that. Good luck! Joe

Honestly, i will print this out and show him.  I know he means me NO harm, and he does NOT want to see me suffer, however I think that there is an elevated concern to do the right thing and take every precaution because I am family..... Thank You Joe.....

Lettucehead wrote on Jul 30^th, 2010 at 9:56pm:

I have to agree with Joe, I must say. Generally, this is why it is very frowned upon to be the medical provider to your family - even extended family such as a nephew.  Not unethical exactly, but very frowned upon. I mean (and perhaps you would) but would you feel comfortable discussing your rectal bleeding or your erectile dysfunction with your uncle?  Or what about your concerns that you're gay or have violent fantasies?  Again, not that you do, but you need to feel able to talk about those things with your doctor if you should need to and feel no judgment or conflict of interest. Just saying, but unless your uncle is the only provider in town, you owe it to yourself to make sure you're getting the best care possible...

Well, as long as I can remember he has been my doc, and trust me it has its benifits as well.  I never wait to see the doc, I never need to make an appointment, etc etc... so the pros and cons balance.....  He is not the only provider in the area, in fact in HIS office there are multiple physicians.  Its just a matter of loyalty.

As previously stated, I am not arguing with anyone that i feel Im not being handled correctly, I just the the apprehensiveness of the unknown is what is a delay for me.  I give blood , I will do an MRI... because in the docs mind, eveything needs to be ruled out..... I understand that...  My question is, WHY NOT JUST WING IT, LET ME GET THE o2, and I WILL STILL TAKE THE OTHER TESTS... IF THE O2 WORKS, I WILL STILL DO WHAT I GOTTA DO, IF IT DOESNT, WELL AT LEAST I KNOW CUZ I TRIED...


Thank You again everyone. 

POPO8 wrote on Jul 30^th, 2010 at 11:58pm:

[quote author=0808020B0F06630 link=1279512611/45#45 date=1280541362]WHY NOT JUST WING IT, LET ME GET THE o2, and I WILL STILL TAKE THE OTHER TESTS... IF THE O2 WORKS, I WILL STILL DO WHAT I GOTTA DO, IF IT DOESNT, WELL AT LEAST I KNOW CUZ I TRIED... Thank You again everyone.

I gotta agree.  Do the tests.  Have the MRI.  But in the meantime, I should hope that you could get treatment for the pain as best you can!  Even better if that treatment were non-toxic, non-addicting, comparatively inexpensive... oh wait!  It is!!!  o2o2o2o2!

sorry, I just really dislike hearing you suffer when something so simple could help...   :(

POPO8 wrote on Jul 30^th, 2010 at 11:54pm:

Honestly, i will print this out and show him.  I know he means me NO harm, and he does NOT want to see me suffer, however I think that there is an elevated concern to do the right thing and take every precaution because I am family

Some good info to print out and to give to your GP is what Bob_Johnson posted when I did my initial post - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - his post is the 5th dne and it has two great articles about treatment options, including oxygen.

Lettucehead wrote on Jul 31^st, 2010 at 1:32am:

POPO8 wrote on Jul 30th, 2010 at 11:58pm: [quote author=0808020B0F06630 link=1279512611/45#45 date=1280541362]WHY NOT JUST WING IT, LET ME GET THE o2, and I WILL STILL TAKE THE OTHER TESTS... IF THE O2 WORKS, I WILL STILL DO WHAT I GOTTA DO, IF IT DOESNT, WELL AT LEAST I KNOW CUZ I TRIED... Thank You again everyone.  I gotta agree.  Do the tests.  Have the MRI.  But in the meantime, I should hope that you could get treatment for the pain as best you can!  Even better if that treatment were non-toxic, non-addicting, comparatively inexpensive... oh wait!  It is!!!  o2o2o2o2! sorry, I just really dislike hearing you suffer when something so simple could help...   :(

I dislike it also man....lol.   Well hopefully when the blood work comes back I will meet with my uncle and I will take MORE stuff to show him and more knowledge to share, and MAYBE.... just MAYBE i can convince him...


On a brighter note.... I made it the last two nights sleeping straight thru without a Headache.... however tonight I was drinking at a wedding reception.... lets see how this goes.... i will be sleeping on the couch, so I dont disrupt her when IT attacks.... Im bracing for it....

Mike NZ wrote on Jul 31^st, 2010 at 2:43am:

POPO8 wrote on Jul 30th, 2010 at 11:54pm: Honestly, i will print this out and show him.  I know he means me NO harm, and he does NOT want to see me suffer, however I think that there is an elevated concern to do the right thing and take every precaution because I am family Some good info to print out and to give to your GP is what Bob_Johnson posted when I did my initial post - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - his post is the 5th dne and it has two great articles about treatment options, including oxygen.

DONE,.... thank You, I will take the pertinent parts with me....

Just wanted to keep everyone updated..... NOTHING yet.  lol


Fortunatley Ive slept three nites without the beast.

3 nights without the beast is HEAVEN!!! ;)

Joe

Three nights sleep ahhhh  That is fantastic news.  Glad to hear it  :)

Thank You Joe and Kate... it was a realy big deal to me also....   Its like a little bit of that peace..........

Saw my uncle/doc today, when i stopped by to take my cousin out driving (just got his permit....)  and got the short version re my bloodwork.... everything looks good, cholesterol is a lil high (runs in my fam, no suprise)..... tick tock.... tick tock..... tick tock..... waiting for MRI apt now......

Hello popo.

Let me just say, I was amazed at the brutally honest self portrait in your intro. You seem to be a stand up kind of guy. Very noble indeed.

But it absolutely sickins me that a police officer cannot cut through the red tape that binds his uncle doc! FOR OXYGEN?

Popo, where is your families compassion?

Family first?! You cant get oxygen from your uncle. Sounds like professionalism first to me.

I dont mean to be rude or blunt. But is our medical system THAT ignorant? Do WE hold our professionals to these high standards and expect them to suffer needlessly because of your professions? NO, in my opinion we dont.

Ask for help popo. Its not weak. Then maybe you and your uncle can tell our story to everyone else in your professions and establish some compassion where its been lost.

I understand the professions you and your uncle have chosen are compassionate in and of themselves. But if you look back over your posts, you might better understand my point.

good luck popo.

1haunted1   ,-( wrote on Aug 3^rd, 2010 at 12:29pm:

Hello popo. Let me just say, I was amazed at the brutally honest self portrait in your intro. You seem to be a stand up kind of guy. Very noble indeed. But it absolutely sickins me that a police officer cannot cut through the red tape that binds his uncle doc! FOR OXYGEN? Popo, where is your families compassion? Family first?! You cant get oxygen from your uncle. Sounds like professionalism first to me. I dont mean to be rude or blunt. But is our medical system THAT ignorant? Do WE hold our professionals to these high standards and expect them to suffer needlessly because of your professions? NO, in my opinion we dont. Ask for help popo. Its not weak. Then maybe you and your uncle can tell our story to everyone else in your professions and establish some compassion where its been lost. I understand the professions you and your uncle have chosen are compassionate in and of themselves. But if you look back over your posts, you might better understand my point. good luck popo.

Well thank you... I do try to be as stand up as I possibly can.  Im the guy that would rather have people hate me for being who I am than love me for being fake.....

I logged on today with the intentions of reviewing my post to look over my time line, so its ironic that you suggest I review my thread... because that is what I will do soon as I finish typing this.

Your right it is frustrationg, and I think it has realy helped my patience with the situation because I have been on a short streak of NO attacks, which makes it realy easy to lapse into the IM BETTER mentality. I push to remember the fear I hold of the next attact to keep me motivated.

I spent 1 hr on the phone today with the Dr Office and Med insurance because of complications that were making it dificult to set up the MRI that I know will not tell me anything......

Either way newest update, Im on 5 or 6 days of No headaches.  I will meet with Uncle/Dr next week for a follow up (my work schedule sucks) and  my MRI is still THREE WEEKS IN THE FUTURe.... ugh......

One more suggestion popo.

If you have children or plan to. Dont make them get through the red tape. Guide them through it and break this cycle of whats percieved to be right or wrong, or weak and strong. Let them pressures go. Do it for YOURSELF. Do it for your family and their families and thiers.

1haunted1   ,-( wrote on Aug 3^rd, 2010 at 1:26pm:

One more suggestion popo. If you have children or plan to. Dont make them get through the red tape. Guide them through it and break this cycle of whats percieved to be right or wrong, or weak and strong. Let them pressures go. Do it for YOURSELF. Do it for your family and their families and thiers.

Well I do not have any children, and maybe someday I will.  I will def do my best to break the cycle of ignorance to this condition......  Thank You


BTW, same day update....   I figured with the fact that I made it the last 5 days clean from headaches, I would enjoy my only day off this week with two drinks......  BACKFIRE!!!!!  4 hour attack!!!!!   PREDNISONE...nothing.    REDBULL....nothing  ICE....nothing.   HEAT PADS....nothing!!!!!  I just dealt with it for nearly 4 hours till it was totally gone.......

Sounds like you learnt that lesson the hard way ;)

Alcohol is the big no no during a cycle...

Kate in Oz wrote on Aug 3^rd, 2010 at 9:37pm:

Sounds like you learnt that lesson the hard way ;) Alcohol is the big no no during a cycle...

However with 5 days off without headaches, wouldnt you believe you were off cycle?

POPO8 wrote on Aug 3^rd, 2010 at 9:27pm:

I figured with the fact that I made it the last 5 days clean from headaches, I would enjoy my only day off this week with two drinks......

Gotta be pretty careful even if it's ending.  So close to CH activity it seems to fade or weaken, not gone or turned off like a switch.  Give this bear more time to settle its restlessness and get into deep hibernation.  After five days, if it's aroused by the smell of blood from a wounded jack rabbit set down outside it's den, there's more willingness left than a sleepy-dampened growl to devour any easy final meals.    :)

POPO8 wrote on Aug 3^rd, 2010 at 9:27pm:

Well I do not have any children, and maybe someday I will.  I will def do my best to break the cycle of ignorance to this condition......  Thank You BTW, same day update....   I figured with the fact that I made it the last 5 days clean from headaches, I would enjoy my only day off this week with two drinks......  BACKFIRE!!!!!  4 hour attack!!!!!   PREDNISONE...nothing.    REDBULL....nothing  ICE....nothing.   HEAT PADS....nothing!!!!!  I just dealt with it for nearly 4 hours till it was totally gone.......

At this point you need to take matters into your own hands.  Go for the welders oxygen.  That cluster could have been beaten with O2 if used correctly.  You can take the other stuff and just throw it out the window when you're into a dandy attack.  The energy drinks help after O2 for me for whatever shadows are lingering and I use ice while sucking on the tank if it's that severe.  If your uncle can't see that his own family member is in pain, I feel very little for him and it's time to move on...but that choice is yours.  Is he afraid to prescribe O2?  Has he ever prescribed it before?  Does he have any neurology background? 

You can get your own mask here at the CH.com store, a regulator online or Ebay and a tank at your local welding supplier.  Have any buddies who weld?  If you can get your own O2 w/o a script, you'd be saving yourself a ton of pain and you can prove to your uncle that it indeed works.  Did you present to him the "oxygen info" from this site, make him watch any Youtube videos of fellow clusterheads using O2 to abort.  If he can't figure it out by then, maybe he is one of those ego doctors who are ignorant to their patients.  Sorry to rant, but I hate to see you suffer in pain.  Like others said, keep the alcohol aside till you're in remission.

Peace,
Chad

Is welders o2 "pure" enough... or safe enough as a medical grade 02???

That was my thought initially when it started.  You know I have been reading and researching and this stuff just keeps confusing the hell out or me.... HOW MUCH O2?  do I get a big bottle or several small ones?

Im worried because I have an 800 mile (one way) road trip coming up first wknd of September and If I have one of these attacks while driving, I will SKITS in the car.... My gf is going with me and we are taking my "hot rod" which is stick, and she cant drive stick so that leaves me behind the wheel...

I feel so OVERWHELMED!!!! Its like I just got an ANCHOR permanantly attached to my ass, and everywhere I go , everything I do.... i gotta watch when its gonna get hooked on something (metaphor for another attack)

I wish, I could just go to the doc.... say... I found this site.... this IS WHAT I HAVE.... FIX IT!!!!

POPO8 wrote on Aug 4^th, 2010 at 7:41pm:

Is welders o2 "pure" enough... or safe enough as a medical grade 02??? That was my thought initially when it started.  You know I have been reading and researching and this stuff just keeps confusing the hell out or me.... HOW MUCH O2?  do I get a big bottle or several small ones?

There are more precise answers, but welding with oxygen needs to be pure, so it is.   Importantly though, it works. 

Several "E" size tanks might be car-carrying convenient, about 29" tall with a 4" diameter.  I haven't worked with the regulator connection, but a some have here.  You can get a mask by Sep., too.

It matters not if you're out of cycle by then, looking into attaining oxygen now will prepare you for a better experience during an episode, which can frequent unpredictably at an always inconvenient time.

and because...


POPO8 wrote on Jul 27^th, 2010 at 9:21pm:

Went to the docs today..... my suggestion to use O2, is shot down because he says "thats for realy severe cases"....

could still be resistance getting it prescribed.




Quote:

I hang out in a garage on my time off, welding, grinding, painting etc

It ain't that far away.   ;)

POPOB,

You will see that a bunch on here use welders O2.
Kevin_M nailed it.  Welders O2 has to be 100% as well.
Look into the "E" tanks with a CGA-870 fitting for the regulator and if has a DISS fitting on the reg., you'll need that barb adapter which I can send you if you need one.  I have a couple laying around.  Make sure that reg. is at least 15 LPM or higher flow rate.  We will help you get set up without the doctor.  Screw the doctor, just help yourself
and if you get set up before this trip, all you have to do is
pull over, hit the O2, abort and continue driving.  It's that simple.  I was very reluctant at first too because my insurance doesn't cover it, but I said, F it!....it's worth it to pay out of pocket to wipe-out this pain.  I have an "M" and two "E" tanks at all times regardless if i'm in cycle or not.  You got to be ready because you never know when the next cycle starts.

Thank You guys... its funny you quoted the WELDING comment, because I stare at the tank everytime Im in the shop like its some powerful source right in front of me.... lol


Well a bit of good new, i swung by the docs/uncs today after I got done work at 7am.....  I think he is realizing that this is serious, because my first comment to him was,

"we need to talk, you know I dont like going to doctors or hospitals for....."  he interupted me and said "unless your dying..."  It actually made me feel just the slightest bit of releif and weakness almost, that I felt I may have made some headway...

I took a packet of almost 30 pages of information that I had printed out... he seemed genuinly interested in reading it and understanding it.... I told him I NEED THE 02... I will continue with the program and battery of tests, but I need to try the 02.... his next comment to me was.... let me send you to a neurologist.....

he handed me two names on pieces of paper... local neurologists here in READING that are good friends with him... he said, call their office today and find out if they take your insurance... if they do, I will get you in there within a day or two....

I know its not the o2, and its not the answer, but damn it if I dont feel just a whole lot of pressure removed because I feel someone listening.. (not that all of you are not listening to me here.... and I appreciate it, TY!!!!)... but my doc is listening......

I will keep you all posted.... im exhausted now and I need to go to bed... been up for 23 hours......  My g/f is going to make the calls for me today (I didnt want anyone to think I was procrastinating)


Oh and btw b4 I left the office, he took my BP... It was high... like 150/100  but Im thinking the stress the exhaustion and all the damn prednisone i have been taking may have something to do with it.... he gave me some BP meds to help out (not sure if that helps at all)  but Im down for anything......

Updates comming soon.  thanks for following...

Well, neither of the neurologists that he suggested accept my med insurance..... thanks KEYSTONE EAST!!!!   Anyways, went on the med ins site and printed out 70+  neurologists that do accept it. I will drop the list off at the Dr office 2moro and hopefully he knows someone and can speed up my process now

POPO8 wrote on Aug 5^th, 2010 at 10:42pm:

went on the med ins site and printed out 70+  neurologists that do accept it. I will drop the list off at the Dr office 2moro and hopefully he knows someone and can speed up my process now

My first neurologist referral by my doc got me diagnosed, but he wasn't too familiar working with clusters, they're not uniformly knowledgeable or experienced with clusters.  Not all visits are the most helpful.  Maybe inquire if they have treated cluster patients or if they can possibly recommend who is known to draw and work with this type of patient. 

POPO8 wrote on Aug 5^th, 2010 at 10:42pm:

Well, neither of the neurologists that he suggested accept my med insurance..... thanks KEYSTONE EAST!!!!   Anyways, went on the med ins site and printed out 70+  neurologists that do accept it. I will drop the list off at the Dr office 2moro and hopefully he knows someone and can speed up my process now

Dude, check out that one I sent you on your PM the other day.  He is in Allentown and a good neuro and is worth the drive.  He is quite knowledgeable with cluster headaches.  He is colleagues with Dr. Rosen who is a highly respected neuro in Eastern PA.  It's worth it to see if  your Keystone Ins. accepts  him.

I printed his information out and forwarded it to the doc with all of the other info....  I highlighted the few that I had found that I had noticed people either spoke about or that people PM's me about.

I did not see him on my list, but I have my fingers crossed!!!!   I agree with you , I would like to go to a doc who can help me ASAP!!!!

Keeping you in our prayers, hope this oe works out for you! Be safe out there. ;)

Joe

Thank You man......    got a great nites sleep last nite... I know Im boring some of you with these simple updates.... But Im learning to LOVE those nights, and appreciate the hell outta them....

A complete nights sleep is of worthy of celebration in high cycle! ;)

Joe

Well its looking like I may push it to see how far EXHAUSTION will take me or should I say MESS me up with these CH.   Ive been on a roll for the last few days of no attacks but... this is how this week is going:

SAT:Had a day time car show.
SUNDAY:went to the gym and worked a 12.
MONDAY:cut the lawn and work'N a 12.
TUESDAY:gonna try to sleep all day,wanted to go to the gym, but...then work another 12.
WEDSDAY:AM MRI appt,followed by a tiny nap,followed by a 1530 hr meeting at the PD, followed by another 12. THURSDAY:after all of Wed's schedule remain awake for 0900hrs hearing....


THE THINGS WE DO TO PROTECT AND SERVE....

I keep updating this thread and realize, that even as the updates and the days roll on... I KNOW NOTHING more, and have NOTHING more to help me... no o2, no answers, no nothing.....

Oh well.  MRI in 3 hours...... Yippie, I hate tight spaces....

Good Luck on your MRI ! 

Think of open spaces while your in there, it's really not that bad. 

Don't want to jinx you but I wound up thinking about SiFi movies while in there  ;D

POPO8 wrote on Aug 11^th, 2010 at 5:37am:

I KNOW NOTHING more, and have NOTHING more to help me... no o2, no answers, no nothing..... Oh well.  MRI in 3 hours......

An MRI isn't likely to add any answers for CH.  You always got us.  There's an unused reg of either size around here somewhere to start a little garage project creation using an additional tank scoring personal mobility.  Other apparatus needed may require simply inquiring or just asking.  Helping you to be less Ch worrisome is needed when otherwise appearing ready and able-minded for the patrol road.

Good Luck on the MRI! I just had one the other night. Just close your eyes before going in and dont open them! It was about 15 minutes. The other thing I did was try to figure out what the sounds reminded me of. One reminded me of my first car trying to start (key word there is trying) and another reminded me of the noises from Pac Man. Seemed to help make the time go by.

Thanks for what you do every day! especially being so close to Home for me!!!

Good Luck, if you need anything dont hesitate to get in touch!

E

For my MRI I had some headphones through which they played a local radio station. The sound quality was that bad that I spent half the time working out why (they "pipe" the sound down tubes as they can't use metallic, i.e. real, headphones and there is a bit of background noise).

The rest of the time I spent trying to remember the physics of how it all worked which had been covered in the medical physics course I did about 20 years ago as part of my degree course.

By the time I'd worked all that out, it was done. It wasn't too bad at all.

From the course we also covered x-rays, CT scan and ultrasonic scans along with the MRI scan, all of which were used on me to try to work out what the cause of my headaches was.

What did impress me was that I'd got the results in under 30 minutes too, all of which showed that my brain was perfectly "normal". I asked if I could see the scans and was able to get the images on a CD. I've since used this to prove to people that I really do have a brain. It also acted as a pretty good sick note when shown to people who are a bit squeamish about seeing brains.

JustNotRight wrote on Aug 11^th, 2010 at 5:43am:

Good Luck on your MRI !  Think of open spaces while your in there, it's really not that bad.  Don't want to jinx you but I wound up thinking about SiFi movies while in there  ;D

Well, it was ok... although I could feel my heart and breathing going like I just ran a marathon.... Fortunatly the doc prescribed me a couple ZANEX or XANEX (however it is spelled to make it though the ordeal.....

now 3 to four days for my results..... hurry up and WAIT......

Kevin_M wrote on Aug 11^th, 2010 at 6:29am:

POPO8 wrote on Aug 11th, 2010 at 5:37am: I KNOW NOTHING more, and have NOTHING more to help me... no o2, no answers, no nothing..... Oh well.  MRI in 3 hours...... An MRI isn't likely to add any answers for CH.  You always got us.  There's an unused reg of either size around here somewhere to start a little garage project creation using an additional tank scoring personal mobility.  Other apparatus needed may require simply inquiring or just asking.  Helping you to be less Ch worrisome is needed when otherwise appearing ready and able-minded for the patrol road.

I know, and I have honestly reached the conclusion that the MRI is simply to say.... YOU DONT HAVE THIS, and YOU DONT HAVE THAT...... its just that time keeps on tickin,tickin,ticken......   lol, you know.

bige7593 wrote on Aug 11^th, 2010 at 8:41am:

Good Luck on the MRI! I just had one the other night. Just close your eyes before going in and dont open them! It was about 15 minutes. The other thing I did was try to figure out what the sounds reminded me of. One reminded me of my first car trying to start (key word there is trying) and another reminded me of the noises from Pac Man. Seemed to help make the time go by. Thanks for what you do every day! especially being so close to Home for me!!! Good Luck, if you need anything dont hesitate to get in touch! E

Thannkyou, and thankyou to everyone, the support on here has been tremendous......

Unlike when I had my shoulder MRI, and all I could stare at was the roof of the machine inches from my face.... this one was cool enough to have a mirror which allowed me to see roght between my feet and out the bottom. And the tech working knew i was concerned and panickd so she continued to talk to me as much as she could.  Oh yeah... and I had an emergency squeeze ball which made me feel ALOT better....

OK LATEST UPDATE!!!!!!!!


Not to happy, but getting somewhere, I think....

My uncle/doctor just called me and he already got the results... He said there is nothing showing that is gonna kill me or to even be concerned with......

He still is holding off on sending me to a neurologist, however is calling in a prescription for an IMITREX inhaler (?????) to use at the first sign of attack.  He wants me to try it for a few day...

He is convinced that what I am dealing with are MIGRAINES and not CH (shich is driving me NUTZ) so between the IMITREX and the BP meds he had given me, he feels that it should be under control....

I guess its a little progress, and he hates the idea of the o2..... HATES IT.  Especially when I told him, if I dont get med o2, i will reg my own with WELDING 02.....

COMMENTS?????

I'd get the welding 02. If you abort the attack with the 02, tell the doc it works. That'll pretty well confirm your CH diagnosis. The imitrex inhaler does work for many, hoping that aborts an attack or two for you.

Joe

He had bad things to say about the welding o2... even though, SOME of the research I found stated it was the same quality.....

He said, "you will blow up your head."   I think that was his way of joking about this to lighten the mood cause I was getting pissed.


Fingeres crossed on teh IMITREX,  I am just HATING  the fact that he is shutting down the idea of CH....  oh yeah, because the one syptom I didnt describe is that the eye on the affected side tears......

Well between sufferers... IDK if it tears because I am usually crying out of both eyes begging for the pain to stop.... (dont tell anyone, I got an image to uphold) l0l

Hi Popo!  I just read thru this entire thread and I hate to hear that you are dealing with all the bs getting the 02.  I have always used welders 02 with great success!!  If the 02 wasn't pure the welds wouldn't hold, and I have never had any worries or problems using it.  Fortunatly, I have easy access getting 02 where I work.  Good luck and please keep us posted!

Beth 

Well, Im stuck on the fence between FAMILY mixed with being my DOCTOR, mixed with me being a COP and not wanting to do anything ILLEGAL.... not that o2 is illegal... however with out a script for it... my concern is Im not using it for proper use..... and just like people who huff nitrous, etc..... I cant be breaking the law....  I love my job, and have many years left in me, and I dont want to lose it over PAIN.... Dont get me wrong it is the most horrible pain ever.... but not life threatning......

Thank you for taking the time to read all of this.  Im soooo happy to see people care enough to follwo it.  Honestly I was looking at the views count for my thread and couldnt believe it was 1200+.... YOU PEOPLE ROCK!!!!

:)  it is great that you are keeping us updated BUT so bloody frustrating to read that you still can't get the 02!!

Kate in Oz wrote on Aug 12^th, 2010 at 12:10am:

:)  it is great that you are keeping us updated BUT so bloody frustrating to read that you still can't get the 02!!

Im feeling that frustration EVERYDAY!!!!  ty

Grrrrrr.
At the very least, push for the neuro appointment.  It's likely going to take a few days to a week to get you in even with your uncle pulling strings and, frankly, a week in cycle is like a year. 
Might as well get the appointment scheduled while you're trying different things.  That way, you'll have the appointment as some hope to hold onto that help is coming.
Good luck and thinking of you!

POPO8 wrote on Aug 11^th, 2010 at 7:27pm:

He had bad things to say about the welding o2... He said, "you will blow up your head." I think that was his way of joking about this to lighten the mood ...

Oh yeah.  Ha ha.  I smelled his resistance to oxygen page one, and pretty much why mentioning the welding tank, but with also a neuro referral thwarted would seem to be a CH blind alley.   

The trex nasal sprays should work, good for use anywhere, too.  Next question though is quantity.  A migraine diagnosis might scribe six a month.  That's how I started with my doc, until less than 48 hours later I told him I was out, then came the neuro referral.  Things could work out in a roundabout way.




Quote:

I'd get the welding 02. If you abort the attack with the 02, tell the doc it works. That'll pretty well confirm your CH diagnosis.

True Jezep, but now if the nasal spray works, the doc may think it's migraines, unfortunately. 





Quote:

however with out a script for it...

POP, I can imagine having a script for oxygen might be more upfront.  That's hard to answer. 

Inquire if they have a "don't ask, don't tell" policy.       ;)

POPO8 wrote on Aug 11^th, 2010 at 9:44pm:

Well, Im stuck on the fence between FAMILY mixed with being my DOCTOR, mixed with me being a COP and not wanting to do anything ILLEGAL.... not that o2 is illegal... however with out a script for it... my concern is Im not using it for proper use..... and just like people who huff nitrous, etc..... I cant be breaking the law....  I love my job, and have many years left in me, and I dont want to lose it over PAIN.... Dont get me wrong it is the most horrible pain ever.... but not life threatning...... Thank you for taking the time to read all of this.  Im soooo happy to see people care enough to follwo it.  Honestly I was looking at the views count for my thread and couldnt believe it was 1200+.... YOU PEOPLE ROCK!!!!

You need to speak to Guiseppi or Joe.  I believe he is a retired cop and has used O2 for many years, even while on the force.
I could be wrong though.  There is 100% nothing illegal about oxygen therapy.  Take action by yourself and ditch the doctors.  They obviously know nothing about CH.  If they ask how your HA's are doing, just say, "I told you so" about the O2....and leave it at that.

You guys are right, and Im concerned that success witht eh IMETREX will make the doc content with simply brushing this off to MIGRAINs...

I had my father... (lol I feel like a kid) give my uncle some shyt about the passing on the neurologist (you know older brothers can be persuasive) and he convinced him for the refferal.   My g/f will be calling JEFFERSON tomorow to see if they accept my med insurance and to see if any docs specialize or are more apt to know CH......  BALLS ROLLING AGAIN...

As for the o2 therapy, I dont know if it would be illegal or not.  Obviously the script makes it all good for sure......   I may have written this before, however at the performance shop I work at on the side, we sell nitrous oxide for vehicles... however, there are people that buy it to HUFF.   So the purchase is legal, its the intended use that makes it illegal.. and that is where I concern myself with the similarities.... just not sure if my intent is for something other than the intended purpose, if I would or could get in trouble....

Pop, I get my oxygen from Praxair Healthcare Services.  Nothing illegal about it whatsoever.  You're not going to be huffing nitrous.  If you consider the doc I PMed you, you'll see what an open-minded doc is like who specializes in headaches of all sorts.  He will write an O2 script easily.  My insurance doesn't cover O2 for headaches, but for $36/M tank out of pocket, i'm not complaining.  Also, my neuro is colleagues with Dr. Todd Rosen who is a highly respected neuro that use to practice at Jefferson.  I'm putting my help out there my friend.  It would be a much closer drive (Allentown) for you too.  Jefferson has a great headache group though.

Latest update.....  Just waiting for my referal for the neurologist.... so thats good news......

And have been going good for a while without a CH.... however the other night It got me.... at first sign I used the TREX nasal spray and pounded a small can of red bull..... I was in the clear and back to sleep within 20-30 minutes (still had the lingering pain, however with a heat pad under my neck and another over my forehead and eyes..... I dozed again......

Well, wish me luck.... 11am tomorow I meet with a neurologist my doc wanted me to go to.  Apparently the head neuro (CHIEF, I think they call the position) at the Reading Hospital.....

I made an agreement with my doc that i will do the visit with that doc... but if i feel like Im starting at step one again, he would refer me to the neuro of my choice.....

FINGERS CROSSED!!!!

Crossing my fingers for ya!!!

Joe

Good Luck!  I truly hope that it proves fruitful.  02 02 02 02 02 02 02 02 02 02 02 02 02 02 02 02 02 02 02  ;)

The neurologiste was AWESOME!!!!!!!!!!!

She listened, asked a bunch of questions... took a bunch of notes... put me through some tests.. then said.

"02 is going to be the best thing for you....."


WOOOO HOOOOO!!!!!!


She called my insurance company.... worded the script the right way and COVERED... about an hour after I left her office the O2 company called and asked if I would be home for delivery of two tanks!!!!

Unfortunatly, I wouldnt be, so they will be at my house at 8am.. to deliver and teach me how to use the stuff.

She also prescribed me....some other BP med, that she said she has had success with in the past, that keeps from the onset of attacks.......


Now , i feel like I can sleep without fear....

That is great news! Praying the 02 proves the silver bullet for you it has been for me. Try and get some of the smaller E-Tanks. They go in your car, your cruiser, you're always right next to relief!!!

Joe

hahahahaha!
hooray!!!!
;D

Ahhh finally!  So pleased to hear it! [smiley=shore.gif]

Pop, FANTASTIC news!

Just make sure they have a regulator that delivers high flow rates and you're using a non-rebreather mask.  If they don't have one, you can get one on the CH.com store on the left of your screen.  High flow regs you can get on several sites.   If you need any help with anything, just ask any of us.  I'm glad your new neuro supports this therapy.  You seemed to found a winner.  Now, i'll drink to that!   [smiley=beer.gif]

Chad wrote on Aug 24^th, 2010 at 9:17pm:

Pop, FANTASTIC news! Just make sure they have a regulator that delivers high flow rates and you're using a non-rebreather mask.  If they don't have one, you can get one on the CH.com store on the left of your screen.  High flow regs you can get on several sites.   If you need any help with anything, just ask any of us.  I'm glad your new neuro supports this therapy.  You seemed to found a winner.  Now, i'll drink to that!   [smiley=beer.gif]

THANK YOU!!!!! IM AM EXCITED, and whether I shouldve or not... I had a drink to celebrate.....  WOOOOOOOOOOO HOOOOOOOOOOOOOOOO!!!!!!!!!!  Thank you to all for ALL OF YOUR SUPPORT!!!!!

Soooooo, I had my first attack with O2 on hand...... Not to sound excited, but I was actually looking forward to having it to see if I could stop it....

Middle of the night (bout 2 hours into sleep)  I woke to the dreadful nasal pain (feels like a sudden pop to me) followed by pressure.  Immediatly, I hit the TREX, then turned on the o2.... I even only ran the regulator at 5 lpm...... I was groggy so I didnt pay to much attention to the amount of time I was on it.. however it was no more than 10 minutes.....  GONE!!!!!  GONE!!!!! GONE!!!! JUST LIKE THAT !!! GONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Great news! Now you have another tool to gas that sucker.

Don

hooray!!!
You go, POPO8!!!!
:D :D :D

Great news POPO8 !! :)

oh yeah now that's what we're talking about!!   ;)

Sweet feeling when the beast loses a bit of his grip on you! Good job partner! ;)

Joe

Quote:

The neurologiste was AWESOME!!!!!!!!!!! She listened, asked a bunch of questions... took a bunch of notes... put me through some tests.. then said. "02 is going to be the best thing for you....."

I just love it when I hear that someone finds a Dr. like this.  After hearing all the "doctor" horror stories from folks on this site over the last 12 yrs...this kind of gives me hope for the medical profession. 

You said you only turned the regualtor to 5 ???   LOLOLOL...that would certainly do nothing for me and most likely I would assume the Trex you used had just kicked in.  How high DOES your regulator go up to?   A lot of us use at least a 25 lpm  and some use an even higher one.  The difference is amazing in how fast one can abort.


Linda

Pop, was that Trex an injector?  If so, that's probably why you got the quick abort.  Try using the O2 w/o Trex.  Once you get that down, you won't need Trex anymore and you'll save $$$.  My old Trex just sits there and it's outdated.  It's a last minute back up if anything.  Like Linda said, I would assume the Trex kicked in because there is no way 5LPM would abort a CH for me.  I sometimes go down to 10 or 8 after the hit aborted.  I stay on it couple minutes after the abort to be sure it's gone.  Batch gave me this advice.  Just keep on playing with it and you'll see you won't need Trex anymore.

Best of luck and keep the GOOD news coming....

Chad wrote on Aug 27^th, 2010 at 11:58am:

Pop, was that Trex an injector?  If so, that's probably why you got the quick abort.  Try using the O2 w/o Trex.  Once you get that down, you won't need Trex anymore and you'll save $$$.  My old Trex just sits there and it's outdated.  It's a last minute back up if anything.  Like Linda said, I would assume the Trex kicked in because there is no way 5LPM would abort a CH for me.  I sometimes go down to 10 or 8 after the hit aborted.  I stay on it couple minutes after the abort to be sure it's gone.  Batch gave me this advice.  Just keep on playing with it and you'll see you won't need Trex anymore. Best of luck and keep the GOOD news coming....

The Trex was a nasal spray.  Comes in these little one shot containers.   I have used it a few times in the past and it only took the edge of the attack.  However with the o2, it went.  I know the 5 lpm sounds low, but it realy did work.  Now Im not sure (like you said) if the combination is what did it or what... but I will try more o2 and no trex next time.

You didn't answer my question as to how high your regulator went but next time crank that baby up to as high as it will go, O.K.?

if you can afford it, get one that goes to 45 lpm.

Linda_Howell wrote on Aug 27^th, 2010 at 6:49pm:

You didn't answer my question as to how high your regulator went but next time crank that baby up to as high as it will go, O.K.? if you can afford it, get one that goes to 45 lpm.

I will check when i run upstairs... but why crank it up, if such a minimal setting did help???

POPO8 wrote on Aug 28^th, 2010 at 12:57pm:

Linda_Howell wrote on Aug 27th, 2010 at 6:49pm: You didn't answer my question as to how high your regulator went but next time crank that baby up to as high as it will go, O.K.? if you can afford it, get one that goes to 45 lpm. I will check when i run upstairs... but why crank it up, if such a minimal setting did help???

   Why fix it if it ain't broke. 

                   Potter

                  

INO, when using a trex inhaler at the same time as 5 LPM O2, be careful about assuming it was the O2 that aborted your CH.

A trex inhaler can abort a hit for me, whereas 5 LPM O2 wouldn't touch it.

Potter wrote on Aug 28^th, 2010 at 1:08pm:

POPO8 wrote on Aug 28th, 2010 at 12:57pm: Linda_Howell wrote on Aug 27th, 2010 at 6:49pm: You didn't answer my question as to how high your regulator went but next time crank that baby up to as high as it will go, O.K.? if you can afford it, get one that goes to 45 lpm. I will check when i run upstairs... but why crank it up, if such a minimal setting did help???    Why fix it if it ain't broke.                     Potter

Thats what I thought... didnt know if there was a reason that was not clear to me....

bejeeber wrote on Aug 28^th, 2010 at 5:31pm:

INO, when using a trex inhaler at the same time as 5 LPM O2, be careful about assuming it was the O2 that aborted your CH. A trex inhaler can abort a hit for me, whereas 5 LPM O2 wouldn't touch it.

I understand that, however as previously stated, i had used the trex nasal spray several times, and it only took the edge off to the point where I could deal (not want to eat a bullet) with the pain... however the attack was still there.   

So since the new BP med the neurologist prescribed me, and the o2 on hand I have not had an attack (knock on wood) since the first time I used the o2.


BTW, about to leave on a long road trip frm PA to KY... and I discovered that I can nicely fit my o2 tank and misc in the carry bag that came with one of my folding chairs.....  Its perfect, discrete, and it has a handle!!!!

Seems to be that this is often the way - finally get all the stuff sorted and the cycle is over!  At least you know what you need next time.

Have a great trip  :)

Kate

Hey Po, it's the beginning of a lifetime remission! ;)

Far better to be armed to the teeth and not get that hot call then to get caught flat footed and holstered! Next time beasty comes a calling, you'll own his butt!

Joe

Still going strong.... only that first time with the o2, and I havent had an attack again... I cant believe it... FIGHT, PAIN, FIGHT for remedy, PAIN, FIGHT, PAIN.... finally get the remedy.... then NOTHING........   Im not complaining, but damn!!!

Quick Update:

I have been doing great avoiding the CH as previously stated.  however this past week I got tossed around on a few different shifts at work, two day shifts followed by a midnight shift, and i think that switch triggered me, because trying to sleep after the midnight shift I got attacked by the beast.  I was actually attacked twice that day.   I had a day off then back to day shift and no more attack (so far.)

Shift change was always a breath holder around here too. The beast he no likey the sleep cycle disruptions. Hoping it's just a blip on the radar and not a full scale start up!

Joe

So I just finished my first large bottle, and they replaced it with two half sized bottles....  I am excited because these will be easy to transport, not that the other one was that difficult.  However does anyone see a problem with me leaving one in my assigned cruiser.... weather wise and all. 

We are heading into cold nights and I did not want there to be an issue, when I tried to use it if necessary.  I would leave it in the car 24/7  most probably in the trunk in a small duffle bag.

Lemme know please , ty

POPO8 wrote on Oct 16^th, 2010 at 7:31am:

We are heading into cold nights and I did not want there to be an issue, when I tried to use it if necessary.  I would leave it in the car 24/7  most probably in the trunk in a small duffle bag.

At below freezing temps, the tank will get very cold.  It's possible the lining of the duffle bag or the material of the bag may become stuck to the tank, very firmly, having to be ripped off. 

As some comedy had shown, like a tongue stuck to a frozen pole. 

:)

ok, but other than that it will be ok?   I mean even frozen to the bag, as long as I can turn the knob and get the mask out......

The oxygen will still be effective.  We all breathe in cold air in winter, it's usually drier.  I haven't set mine in the cold to breathe, but there have been a few here that have talked about breathing colder oxygen.  If often, a humidifying attachment would help.

Something to keep in mind - I've seen it reported here that a humidifier/bubbler shouldn't be used with high flow O2.

See This topic for one of the Humidifier / Bubbler issues with Higher flow rates:


Quote:

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

After leaving my E-tank in my truck for 8hrs at 5*F, I got hit and when I got to my truck the tubing for the mask was so stiff I thought it would break, but it didn't. The tube was sticking straight out form the mask...

At one of our Clusterhead gatherings in St. Louis, Tony from lifegas said they have seen the internal seals fail on tanks at extreme cold temps. This can let our O2 out when the valve is off.

Best of luck,  Don

POP's not indicated in this thread using anything close to high flow, but a humidifier shouldn't be needed for a less often used spare tank in a trunk.  Just mentioned it in case there was any dry, cold feeling when breathing it.  Don seems to have breathed it just fine, but his experience mentions the plastic tubing in cold, could be a factor over time, or the seal.

POP I'm in So Cal so we don't get the freezing temps you do, but on cycle, an E-Tank, in a little duffle bag, was part of the patrol gear I loaded in my cruiser every shift. It was the same E-Tank I kept in my POV just loaded and unloaded it every shift.

Joe

Well, Im back again.... lol.

At least Im still armed with all I learned by meeting all of you and this fabulous site.....


After a long hiatus from the BEAST.... it is back....  been getting spuratic attacks, some days on , some days off.  Thank God for my O2.....


Just my update and HELLO once again....

Hi POPO8!
Have just joined here but would like to offer my support by saying that it helps you deal with the Fear when you find out what is wrong with you.... I thought I had a tumour when they first started 11 years ago!
It doesn't help with the pain though, as we all know.....

Seriously considering (when my Divorce is over) moving to Japan and becoming an English teacher!
because (apart from the gorgeous chicks) they have Oxygen Bars don't they!

Best Wishes for the future!
Regards
Gary

Hey POPO!!! Long time no see! Sorry the beast worked his way back to your side of the world. Hope you kept your war chest topped off for just such an occurence.  Wishing you a short go round this time.

Joe

Batty wrote on Jan 20^th, 2011 at 4:55am:

Hi POPO8! Have just joined here but would like to offer my support by saying that it helps you deal with the Fear when you find out what is wrong with you.... I thought I had a tumour when they first started 11 years ago! It doesn't help with the pain though, as we all know..... Seriously considering (when my Divorce is over) moving to Japan and becoming an English teacher! because (apart from the gorgeous chicks) they have Oxygen Bars don't they! Best Wishes for the future! Regards Gary

Thank You Gary, I appreciate the words.   I no longer feel that I may be having an anurism everytime it attacks......  I finally have an arsenal to fight it when it comes.  I just wish I knew what triggered it, after being good for a while.... oh well.....

Guiseppi wrote on Jan 20^th, 2011 at 8:25am:

Hey POPO!!! Long time no see! Sorry the beast worked his way back to your side of the world. Hope you kept your war chest topped off for just such an occurence.  Wishing you a short go round this time. Joe

Thank You brother, yes Im topped off and always have my weapons at my fingertips... but its killing me that I did so well for a while and boom.... its back.  Not sure if weather and dry sinus have anything to do with it.... wondering if stress at work is doing it    I just dont know.  I go day by day... may hit me once in a day then nothing for a day, may hit me a few times in a day then nothing... THERE IS NO DAMN PATTERN!!!!!

Quote:

Not sure if weather and dry sinus have anything to do with it.... wondering if stress at work is doing it    I just dont know.  I go day by day... may hit me once in a day then nothing for a day, may hit me a few times in a day then nothing... THERE IS NO DAMN PATTERN!!!!!

Hi POPO,
Just read this and I want to tell you of an incident about 6 months ago, I was having a 'shadow' in work, it was early afternoon.... As it is a predominantly night time thing as we all know, I wasn't impressed! I had the sickly feeling I normally get before and, working 12 hrs in a noisy environment is the last place I would chose for an attack...

We have a small '1st Aid post' so I went and had my BP checked and it was higher than normal. I thought at the time it was a good opportunity because how many peeps here have had a professional BP test during  an attack? I am convinced stress with accompanying high BP is a trigger!

Had my two close friends around for a meal and a good chat last night, had a great time but, I looked at the bottle of wine for a few seconds, then thought 'what the hell'!.
I paid for it good style though, with about 6 CH's, kip 3-4, one after the other till about 4 am, when I got out of bed and had 2 coffees.I went back to bed till an hour ago without a repeat, but the 'Demon' gave me the finger in the form of a shitty dream he left on my head's answerphone!(Twisted Mother!)

Its one bloody day at a time POPO!
Regards
Gary

Yeah, for about 33 years I've been trying to establish a trigger for my cycles, a pattern, an answer to the  "WHY", too much stress, too little stress, atmospheric changes, diet changes, too little coffee, too much coffee, I've changed a million different aspects of my life. Still, the cycles come, the cycles go.

Joe

Thank You guys... Im not saying that Im happy it happens to you, but Im more at ease Im not solo with the frustration of not being able to figure it out.... Im THAT GUY, I figure everything out.  Theres a problem, friends, people , come to me, they lay it all out.  I leave them I stew on it and I FIGURE IT OUT.  Yet here I am, my own head and I want crush it in a vice because I cant figure it out.....

Guiseppi wrote on Jan 21^st, 2011 at 8:36am:

Yeah, for about 33 years I've been trying to establish a trigger for my cycles, a pattern, an answer to the  "WHY", too much stress, too little stress, atmospheric changes, diet changes, too little coffee, too much coffee, I've changed a million different aspects of my life. Still, the cycles come, the cycles go. Joe

Hi Joe,
Just had a quick read and think your right.... working odd shift work, my head is up my ass most of the time, I have to look at my 'rota' to find out what day it is... I dont think there is any 'rhyme' to my cycles and, have better things to do than plan for and know when he is coming again! As long as each of us has their 'stuff' to hand, I think thats the best we can do!

You would be pretty pissed off if you gave up our modern 'evils' and went into a Monastrey
only to find that the chanting gave you a CH!

Respect
Hope you get sorted soon POPO!

Gary

POPO8 wrote on Jan 24^th, 2011 at 2:50am:

Thank You guys... Im not saying that Im happy it happens to you, but Im more at ease Im not solo with the frustration of not being able to figure it out.... Im THAT GUY, I figure everything out.  Theres a problem, friends, people , come to me, they lay it all out.  I leave them I stew on it and I FIGURE IT OUT.  Yet here I am, my own head and I want crush it in a vice because I cant figure it out.....

That's why we're cops...we like to "FIX" stuff! ;)

Joe

That's why we're cops...we like to "FIX" stuff!

Cops and nurses alike...other peoples problems are so much easier to solve than our own.
I'd rather try to solve others problems as it stops me thinking about what potentially lies in wait for me when I last expect it (the demon)
Wishing you all a PF day  :)

Its been a while since I updated, so I just wanted to get on here and say that I appreciate this site, all the great people that took the time to help me and understand my CH, and say that if not for this site,I would still be suffering with no clue.


PS- CH free for a while.....


THANK YOU ALL!