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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> new victim in first cycle
        
(Message started by: woodeyepegleg on Oct 16^th, 2007, 12:52am)

Title: new victim in first cycle
Post by woodeyepegleg on Oct 16^th, 2007, 12:52am

Hello fellow clusterheads.

I am going on week 3 of my first cycle of cluster headaches. And all I can say is it sucks. I never thought I would find people that understand what I am experiencing to a TEE. That alone helps me cope.

Just a few questions...

I went to the doctor last friday and he officially diagnosed me with cluster headaches though I knew what I had before I made the appointment. I was told the #1 treatment is Oxygen and that he was going to check to see if it is covered by insurance.

I was also prescribed the following:

800mg Ibuprofen
5/500 hydrocodone
Imitrex pills

The ibuprofen doesnt seem to help and the hydrocodone just seems to dull the pain but never stops it. I havent gotten the Imitrex filled because they were pretty pricey and I wanted to try the 3 samples first. The samples seemed to abort the attack within 15 minutes but put alot of tension pain in my shoulders. (like someone pressing your shoulders pressure point area with their fingers) I've read that Imitrex and other abortive drugs can cause longer and more intense future cycles. Can anyone testify to this?

Also, what should I expect from the insurance company for needing an oxygen tank? Bluecross Blueshield if that makes a difference.

I am so glad I found this community. It gets exhausting trying to explain to work and family what I am experiencing just to have them tell me "hear-say" remedies for curing migraines. The hardest part of suffering from CH is lack of sleep and still trying to manage a normal 8 - 5 life.

God bless all of you for living and coping with something that the rest of the world just doesn't understand and always remember that life could be worse in so many other ways. And many thanks to all those responsible for your research, time and devotion to helping others.

Title: Re: new victim in first cycle
Post by Bob_Johnson on Oct 16^th, 2007, 8:20am

I'm sorry to be the first responder and then to be critical in the doing--but....

Your doc's Rx suggest that he has little understanding of CH. Pain meds, especially the wimps he has suggested, will not touch CH. And, for most people, Imitrex pills are too slow acting to hit CH compared to the injection form which will usually give relief within a few minutes.

Suggest you print out these two documents and study them. Give a copy to the doc. This will, in effect, challenge his treatment decisions without you getting into a cat fight of an uppty "civilian" tell the M.D.what to do. If he can't accept your offering with some interest, then it may be time to look for another doc. We have much too much experience with doc who do not know as much about CH as we do but we can offer some ideas for finding another doc, if you wish to do that.
--------
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)

Title: Re: new victim in first cycle
Post by lorac on Oct 16^th, 2007, 8:22am

Hi...I love your handle woodeyepegleg! too funny

On the 02 thing.... I have bcbs too, and they will pay for it for up to three months.. Just right for me!

Also If you check around to different 02 suppliers, they will help you as long as you have a script....

I once found one that thought my insurance would not pay.,, so they let me have it for $5. per tank..Otherwise, my co now (pulmacare) charges my ins. co. 45.00 per month.... Well worth the $ if you have to buy it yourself, but check around first.
02 is the best for me... good luck! Lorac

GO VOLS ;;D :D ;) :)

Title: Re: new victim in first cycle
Post by DennisM1045 on Oct 16^th, 2007, 9:25am

Hi and Welcome! I'm sorry to hear you have clusters but you've come to the right place ;;D

Don't bother with the Ibuprofen or Hydrocodone. Neither will work. The Imitrex pills will help but abort too slowly to be really effective. The tightness you feel in your shoulders is normal. It's your circulation system constricting. Because this is such a rough ride Oxygen is my primary abortive and Imitrex only used for the big slammers. I abort 90% of my hits with Oxygen within 15 minutes.

You'll want to try energy drinks too. If you knock one or two back quick enough they can hold off the beast. Most of the time I use them in conjunction with O2 therapy. The brand doesn't really matter. Get whatever is on sale ;)

On the Oxygen front you'll need a regulator that flows at 15lpm and what they call a non-rebreather mask. It has flap valves on the sides and a bag on the end of the mask. Take a look at the Oxygen support pages at OUCH-US.org here: http://www.ouch-us.org/medications/oxygen/o2links.htm. The supplemental guide will tell you everything you need to know.

I had BCBS when I was first diagnosed and they had no problem providing Oxygen. Though you may have to go to a Neurologist to get a perscription. GPs seem to have trouble getting through the paperwork.

Good luck and let us know how it goes for you.

-Dennis-

Title: Re: new victim in first cycle
Post by Rosybabe on Oct 16^th, 2007, 12:15pm

Welcome Home Woodey!!

The guys already provided great information. I will only suggest you to check the OUCH website as well.

here is the link:
http://www.ouch-us.org/index.shtml

and yes Ibuprofen will only hurt your tummy and won't touch CH :(.

Wishing you a very short cycle.

Rosy.

Title: Re: new victim in first cycle
Post by barnythebear on Oct 16^th, 2007, 4:40pm

Sorry to see you've joined the clan. I can say that normal pain killers don't work. I've taken 30/500 cocodemol with little effect. The paracetamol will kill you before you get any real pain relief. Red bull or similar certainly seems to work, if you get in there early enough. At night times melatonin helped, I was trying 9mg and will certainly be buying up the USA's supply the next time I'm there.

Title: Re: new victim in first cycle
Post by barnythebear on Oct 16^th, 2007, 5:08pm

Title: Re: new victim in first cycle
Post by woodeyepegleg on Oct 16^th, 2007, 6:40pm

I spoke to the doc today and was told that BCBS would not cover the Oxygen. He tried again to talk to them but he said they would not budge.

As I was writing this, I called BCBS myself and they said O2 was considered a medical critical treatment for cluster headaches. SCORE! Really makes me wonder about this doc now.

Anyway, this is the deal with the insurance...

They will pay for the price of renting the O2 tank monthly up to the purchase price of the tank. Then I was told that I own the tank.

So if the tank is $150/mo. to rent and to purchase is $1500, the insurance will cover 10 months of rental whether its this year or 5 years down the road. I had her clarify that I would then own the tank. Seems like one of those things that sounds too good to be true since it is covered 100%.

Does this sound right?

Title: Re: new victim in first cycle
Post by MR_FLOOR on Oct 16^th, 2007, 7:02pm

Hey Woody,

Sorry your name is a little too long. Anyway ask your doc about Verapamil as a prevent,it has worked wonders for me. And as Dennis said narcotics as an abortive are next to useless not to mention they can trigger CHs. And also try the energy drinks anything with the combination of Taurine and Caffeine in it slam it down at the first hint of being hit. And last but not least always I mean always hear what Bob has to say he is very knowledgeable.

Hang in there,be positive and you will learn how to cope with this,as do the rest of us.

Dave

Title: Re: new victim in first cycle
Post by phil_h on Oct 16^th, 2007, 8:15pm

WELCOME ABOARD..........SORRY YOU NEEDED TO FIND US , BUT YOU ARE HOME NOW............ Good news is you diagnosed early.....Most of us bounce around with multiple misdiagnosis, sometime for years..... The bad news is your MD doesn't sound well versed in TX of CH....... but listen to Bob....educate your MD or find another.......... Wishing you pfnad's............. phil h

Title: Re: new victim in first cycle
Post by woodeyepegleg on Oct 17^th, 2007, 8:56pm

Thanks to all for your support and PF wishes. Last night I actually didn't wake up for once since these started. Also I haven't had a 9pm'ish attack in a couple of nights though I know they are still around because I can feel the dull part of it thoughout the day and evenings. Maybe the cycle is going away. (knock on wood) I have started drinking more water daily and drink 1-2 Monster energy drinks daily now. (The new Chaos flavor is great) Other than that I haven't changed anything and as of yet Im not on any preventive drugs.

I feel as if I don't deserve to NOT have attacks knowing that others out there are still having them. Regardless of what the near or far future holds, I am happy to know that I have a place to come where others can relate to my pain and I to theirs.

Bob I will hold on to the pdf's you linked if I need them. Much thanks!

Question: I saw somewhere either here or OUCH or another website that listed CH recommended doctors for each state. I would like to start using these if needed but I can't find the page anymore. Can someone link it if they know what I'm talking about?

Title: Re: new victim in first cycle
Post by woodeyepegleg on Oct 17^th, 2007, 9:03pm

on 10/17/07 at 20:56:29, woodeyepegleg wrote:

Question: I saw somewhere either here or OUCH or another website that listed CH recommended doctors for each state. I would like to start using these if needed but I can't find the page anymore. Can someone link it if they know what I'm talking about?

Nevermind, I found them in the next post I read linked by melly_mudflaps. http://www.ouch-us.org/chgeneral/doctors.htm

(twilight zone music plays)

Title: Re: new victim in first cycle
Post by Linda_Howell on Oct 17^th, 2007, 9:16pm

so much to say, so little time.

Woody, BCBS WILL pay for 02.

The thing is, you don't want to get them involved. With my BC Ins. I was charged 42.00 per e-tank. OUTRAGEOUS! so I went to my supplier and listen carefully....sat down with the manager, and made a deal with them for cash. 10.00 per tank is what we came up with. Ya just got to be persistant and make friends with that manager.

Forget the Ibuprofen unless you want to be looking at an ulcer. It does nothing for CH anyway.

and y'all knew it was coming..........

Narcotics do not work for CH and have NO place in it's treatment. At all. Ever. Nada. Zilch. They don't work, they can and DO bring on rebounds from hell and you are left with another problem. Addiction to painkillers. Just what you need, right? Save the narcs for when you have had surgery or a tooth pulled and need pain relief for a day or two. That is what they are good for. Anything else and I WILL tell you I told you so.

Linda

Title: Re: new victim in first cycle
Post by woodeye on Oct 17^th, 2007, 9:48pm

Linda, that is very valuable info. Do i need a prescription or letter of necessity by my doc? I will post back any updates.

Title: Re: new victim in first cycle
Post by DennisM1045 on Oct 17^th, 2007, 10:17pm

You will need a perscription for medical O2. 100% at 15lpm. Doctors are reluctant to perscribe this high rate because the protocol calls for 10-12lpm. However regulators that can deliver 10-12lpm typically go to 15lpm.

Another alternative is welder's O2. Comes from the same tank. Just don't tell the supplier you want to inhale it. They'll balk. From what I understand the regulator isn't the same but I'm not sure. Jonny knows more. PM him if you're interested in taking this route.

Good luck bro...

-Dennis-

Title: Re: new victim in first cycle
Post by Linda_Howell on Oct 18^th, 2007, 2:10pm

As Dennis already said, yes, you will need a script for the 02. If for some reason they can't or won't give you a regulator that goes to 15 lpm and a non-rebreather mask, then I want you to come back in here, pm me your address and I will send you the proper equipment. Can't help you with the tank though, you're on your own with that. lol

Linda

Title: Re: new victim in first cycle
Post by GrandPotentate on Oct 18^th, 2007, 9:28pm

Thank heaven for the internet! You found out things in a week that took many of us years! I went though a bunch of wrong dope for awhile before getting a good diagnosis and getting hooked up to O2. Wrong dope made me goofy, but didn't do squat for the pain. The only good was that I stopped a two-pack-a-day habit and didn't even notice I quit until I sobered up later.

A little coffee usually gets me through the day, and some O2 or hard pacing though the hits at night. Kinda ruins the social life for a month or two.

I'd recommend shopping for a new doc or get your GP to refer you to somebody better. But beware: not all neuros are up to speed on this either (see "wrong dope"). Find yourself a good listener and someone who takes a real interest in keeping this at bay. I hope you can find a winner quickly!

O2 is covered by my insurance. You may have to make some calls, but it sounds like you are well down that path.

Oh yeah, and what those other guys said, too.

Title: Re: new victim in first cycle
Post by JenniferD on Oct 19^th, 2007, 12:26pm

Hi Woody! Welcome to the nuthouse.

I finally got a script this year for o2 but my ins wouldn't cover it, which was fine with me. I took the script to a medical supply place, explained what CH is (cuz they didn't know) and got the help I needed. I rent a MONSTER size tank for $50.00 mo, and refills would be $26.00 per refill.

Definitely get your doc to prescribe a preventative such as verapamil. Takes a while to get in your system so your best bet as an abortive is the o2.

Good Luck!
Jen

Title: Re: new victim in first cycle
Post by woodeye? on Oct 24^th, 2007, 10:14pm

Thanks to everyone for their support and great feedback. I had my first O2 rig delivered about an hour ago. He only had an 8 LPM regulator with him and brought a plain-jane mask with no valve flaps on it. I filled him in on what I needed and even showed him this site with the Non-rebreather pics. He is bringing a 15 LPM regulator tomorrow with supposedly the correct mask.

I spoke to my doc again yesterday and he seemed to have done some research on CH and was very helpful with what I told him I needed. Before I knew it, he had taken care of the Oxygen supplier part and the delivery guy was knocking at my door.

Again, thanks to everyone. I would be lost without your feedback.

Title: Re: new victim in first cycle
Post by Linda_Howell on Oct 24^th, 2007, 10:29pm

I love happy endings.

Now don't go away just because you've been helped a bit. Stick around and pay it forward as they say here. ;)

your situation, the things you've learned here and the advice you can give... can be invaluable to some newcomer who is struggling just as you were.

Linda

Title: Re: new victim in first cycle
Post by woodeye? on Oct 24^th, 2007, 10:42pm

I'm not going anywhere. I am still new to this and still learning. I will pay it forward but I'm sure I will still have alot of concerns and questions.

I watched the video on clusterbusters.com with the guy in the hotel room named Chuck. That scares me. Is that common? Is this what a 10 is like or maybe he has no tolerance to pain.

http://www.clusterbusters.com/chuckattack2.wmv

I do not want to use a preventative at this time because of the side effects they can cause but only time will tell.

I think it is important that people educate the world to CH and maybe one day the term will be as common as migraines to those that don't suffer from it.

on 10/24/07 at 22:29:52, Linda_Howell wrote:

I love happy endings.

Now don't go away just because you've been helped a bit. Stick around and pay it forward as they say here. ;)

Linda

Title: Re: new victim in first cycle
Post by George_J on Oct 24^th, 2007, 11:16pm

on 10/24/07 at 22:42:20, woodeye? wrote:

I watched the video on clusterbusters.com with the guy in the hotel room named Chuck. That scares me. Is that common? Is this what a 10 is like or maybe he has no tolerance to pain.

http://www.clusterbusters.com/chuckattack2.wmv

Welcome, Woody. As you can see, you're getting nicknamed already. ;)

Chuck's here, and a frequent poster--and as far as pain tolerance goes, he's Mr. Ironpants. (I'll probably regret saying that.) I think Chuck said at some point that what you saw was about a 7.

A 10 is far worse. I don't think you'll find many of us old-timers who'd disagree. And yes--we're all pretty messed up when it ramps that high. That doesn't happen very often--at least to me.

Again, welcome.

Best wishes,

George

Title: Re: new victim in first cycle
Post by woodeye? on Oct 25^th, 2007, 6:18pm

on 10/18/07 at 14:10:59, Linda_Howell wrote:

If for some reason they can't or won't give you a regulator that goes to 15 lpm and a non-rebreather mask, then I want you to come back in here, pm me your address and I will send you the proper equipment.
Linda

i might have to take you up on the non-rebreather mask offer if they can not find me one. They brought me back a partial breather mask that has the bag but no valves to keep outside air out. The delivery guy said he doesnt think they have those. I find that hard to believe from an oxygen supplier. I will let you know and thanks.

Title: Re: new victim in first cycle
Post by DennisM1045 on Oct 25^th, 2007, 7:55pm

You can improvise and block the holes with some tape or glue them shut. I've had to do that more than once. If you block both holes you will have to lift the mask to exhale. Remember to leave enough back pressure in the mask though so the the seal on top of the bag closes. Otherwise it won't fill very fast and you'll be wasting O2.

Do the holes have posts on them to put the valves on? If they are flat you're screwed and have no choice but to block the holes completely. If they have posts you might be able to fashion something to take their place.

Good luck...

-Dennis-

Title: Re: new victim in first cycle
Post by woodeye? on Oct 26^th, 2007, 12:41am

on 10/25/07 at 19:55:38, DennisM1045 wrote:

Thanks Dennis. Funny I just put clear packing tape over the holes before I read your post. It is a non-rebreather (with safety valve) so one side covered, one side with holes but no post. It was the only one they could find. They actually don't seem familiar with the non-rebreather mask.

Title: Re: new victim in first cycle
Post by ski2k on Oct 26^th, 2007, 10:49am

Welcome, Woody!

So.... I've read all the postings in this thread and have a question for you: Does the O2 seem to be working for you? I'm just curious, as I like hearing about people finding something that works!!

Best of luck to ya!
Adam

Title: Re: new victim in first cycle
Post by DennisM1045 on Oct 26^th, 2007, 1:17pm

on 10/26/07 at 00:41:06, woodeye? wrote:

Funny I just put clear packing tape over the holes before I read your post.

Another creative clusterhead! I love it. Good luck Woody and let us know if the O2 is working. We can help you refine your technique if its not.

-Dennis-

Title: Re: new victim in first cycle
Post by woodeye? on Oct 26^th, 2007, 6:09pm

I haven't had a chance to try it yet cause I can't get the right mask.

I am confused now because all I've read is non-rebreather with valves on each side, correct?

John with Lincare basically is now upset with me now and we all but got into an argument over the masks. He told me that he could not order a non-rebreather with valves on both sides. He said that the regular breathing masks work fine for CH sufferers and I know I offended him. sigh!

I guess I will see if it works or not.

Title: Re: new victim in first cycle
Post by ski2k on Oct 27^th, 2007, 6:30am

Don't let the mask thing get to you, Woody. Stuff like that happens to us all the time.
Just go ahead and use the one you have. I was told too that they couldn't get me one. They said only EMT's use the "full" nonrebreather masks with valves on both side. My solution: Duct tape!! It really doesn't need to have valves on both sides. As long as it has one, you'll be fine. However, if there's a hole on the other side, cover it up and let the single valve do it's work. No need to hit the Lincare guy over something like that! [smiley=laugh.gif]

Let us know how it works for you!

Adam

Title: Re: new victim in first cycle
Post by Jill on Oct 28^th, 2007, 5:27am

on 10/24/07 at 22:42:20, woodeye? wrote:

I watched the video on clusterbusters.com with the guy in the hotel room named Chuck. That scares me. Is that common? Is this what a 10 is like or maybe he has no tolerance to pain.

Hi Woodeye,

I am sorry that I am so late in posting on this thread - I just read what you wrote and wanted to respond.

When we get hit hard, we tend to react in a major way, some say that we are dramatic but then those people. My hits always rank on the high end of the KIP scale, no less than an eight.

Anyways, the video of Chuck's attack was tame to me. I tend to pace, rock, moan, throw things, slam my head into any hard - some might say that that is extreme and it might just be me that reacts so harshly. It has nothing to do with pain threshold, more of trying to deal with the attacks as they come.

I have never understood how people can sit and focus on oxygen or something like. I cannot do that for the life of me but maybe the difference is the level of the attack. :-/

Anyways, I just wanted to write and tell my end of things. And I am in no way diminishing anyone else's pain or saying that mine is worse... I promise.

I hope that your headaches slow down and that the oxygen works for you.

Jill