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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> hello
        
(Message started by: orovillemike on May 9^th, 2007, 11:43am)

Title: hello
Post by orovillemike on May 9^th, 2007, 11:43am

hi im mike been around here for a couple of days jest learnin how to use a computer .
ive had thease headaches for some time now but mr dr jest gave it a name and this is it .... im up 3 times a night almost every night
any ways jest wanted to say thanks to the person that answered my two posts witch i guess i posted in the wrong spot sorry

icant belive the things ive read in the last two days i alot of thies ive tried on my own but theres alot i need to talk to my dr about i think ill bring hium here to see this site and ouch site to

thanks to all

Title: Re: hello
Post by LeLimey on May 9^th, 2007, 3:10pm

Hello Mike I'm sorry we have to meet you here.

We'd love to help you and to do so effectively we could use a little more info so if you could tell us what meds you have tried or are taking and what, if anything helps we'll do all we can to help.

You're not alone with this - remember that okay?!

Helen

Title: Re: hello
Post by Rosybabe on May 9^th, 2007, 6:15pm

Hi Mike!
http://i166.photobucket.com/albums/u89/pinkatoo/welcome.gif

There is a a lot of information in this site and also in O.U.C.H., so keep reading ..

Pain free wishes for you!

Title: Re: hello
Post by orovillemike on May 9^th, 2007, 6:25pm

hi well at first i was on imatrix and propanonol the imatrix gave me chest pains shortness of breath and pain in my corotid artory the propanonol didnt seem to do anything
now im on vorapamil and is no help 2 months in
i also take saeiquil and elavil witchis to help me relax at night and get some sleep but it well get me to sleep but the prin still wakes me up 2 or 3 x's a night i only average 3 hours a night ive asked my dr for o2 he said that my blood o2 level is normal

Title: Re: hello
Post by Rosybabe on May 9^th, 2007, 6:31pm

The O2 is an abortive, you need it to help you abort the hit, not because your Oxygen levels are low. Please print out the information about Oxygen at your left and take it to your Doctor, Obviously your Doc is not that informed about CH and the best abortives.

Imitrex do sometimes gives me pain, you should try to take a lot of water when you take the medicine.

Good Luck Mike!

Title: Re: hello
Post by orovillemike on May 9^th, 2007, 6:35pm

im scaredof the way imatrix pills do to me i dont know about the shots

i do drink lots of water all day and night about 2 gallons a day

ive gone to ouch and singed on

Title: Re: hello
Post by Rosybabe on May 9^th, 2007, 6:38pm

ok, maybe going into shots will work better for you because you can control the amount of Imitrex that gets into your body, a little less could mean less side effects.

Title: Re: hello
Post by orovillemike on May 9^th, 2007, 6:50pm

ill talk to my dr hes not that informed on this ch thing

i am going to give him this web address and the one for ouch i hope he reads at least as much as i have causei have learned a lot in the short time i have been sing on
it seams my sister and her daughter are always wanting the computer witch is understandable cause untell now i never did any thing but check my email now they cant get me off of it

thanks for talking with me jest knowing there is other people with this realy helps i have ask other people in other suport groups im in and no one ever herd of this

Title: Re: hello
Post by Rosybabe on May 9^th, 2007, 6:59pm

yes CH is quite rare, it is in our hands to make the people know about this condition. Print the information you saw in O.U.C.H and take it with you at your Doctor appointment.

Hope you get the best outcome of your Doctor visit.

Best wishes for pain free days and night for you!

Title: Re: hello
Post by LeLimey on May 10^th, 2007, 2:10pm

Mike what dose of verapamil are you on? Sometimes increasing it (with doctor approval only) is what is needed.

The average seems to be around 480mg a day with people needing to go much hgher sometimes to 960mg for instance to experience relief. If you tell us your dose we'll have a better idea of things to suggest you discuss with your doc :)

We will help you don't worry! I see you have mentioned other support groups - are they for you or other family members? It would be worth you mentioning other conditions as that might exclude some options we would otherwise suggest as possibles.

Hang in there, we'll help (oh and keep a fork beside you when you're on the computer - if the other family members try to get you off you can threaten to stab them in four places at once! ;) )
Helen

Title: Re: hello
Post by orovillemike on May 10^th, 2007, 3:46pm

thanks for the laugh (fork)

as fra as my verapamil dose my dr is wanting to take me up slow because my plood presure is norm but i take 150aday 50 when iget up again at lunch and at dinner

other suport groups are for me im a recovering addict i have almost i have almost a year this time i quit for the first time 3 years ago thats when i started with ch

so other suport groups is my (NA)family and the god of my understanding with out thease things i wouldnt still be alive

i hope that knowing this about me dosent make any one think bad about where ive came from but i live an honest program otherwise im living a lie and that dosent help anybody

my drs have tryed to give me pain killers when i first started seein them but now they know i dont want them and that got him to look for other reasons for my pain and he came up with ch

there i feel better now im not trying to hide my past

one day at a time

Title: Re: hello
Post by Rosybabe on May 10^th, 2007, 3:58pm

Mike, nobody will think anything bad about you, all the opposite because You have taken steps to recover and get out of the hell that drugs are..

You can count on us for support not only for CH but also for anything else that may be affecting your life..

This is a family and you belong to that family now.

You are right than living a lie does not help, being honest with yourself will make the road to recover a lot easier..

Painkillers don't do nothing for CH, you don't need to take those, neither narcotics..

follow your Doctor advise and ask him about O2, it is a safe way to abort CH and many of us had good results using it.

Hang in there and I am sure you will be pain free in no time.

one day at the time!!
Rosy.

Title: Re: hello
Post by orovillemike on May 10^th, 2007, 4:07pm

thank you

ive got to go be back later though

Title: Re: hello
Post by LeLimey on May 10^th, 2007, 4:32pm

Mike at 150mg a day I'm not surprised its not helping you - how slowly does he have you tapering up?

I have quite a low BP - 90/50 is my "clinic" BP and its lower if I'm resting and even I was increasing by 80mg every week. I am all for caution but excessive caution won't get you anywhere and just leaves you suffering.

Title: Re: hello
Post by ClusterChuck on May 10^th, 2007, 4:41pm

on 05/09/07 at 18:25:57, orovillemike wrote:

ive asked my dr for o2 he said that my blood o2 level is normal

I see this, and I see RED!!!!

The O₂ that you need has NOTHING to do with your blood/oxygen saturation levels!!! Train this doctor right. Get him/her to read about oxygen as a cluster abortive. It is well written up.

Three VERY important tools to fight this beast are (in priority order): attitude, Attitude, and lastly ATTITUDE!!! Never EVER let the beast win! You are stronger than the beast!

Good luck!

Chuck

Title: Re: hello
Post by orovillemike on May 11^th, 2007, 7:43pm

went to dr today and still dosent want to give me o2 at least not now so what do i need to get so i can set up one from a welding shop and how much dose it cost to set me up

Title: Re: hello
Post by Rosybabe on May 11^th, 2007, 9:39pm

Fricking Doctor!!!

I am not sure of the tank prices in your state but the regulator (15 lpm) runs around $40 on ebay and the mask at clustermasx.com for $25.

You do need a tank at least M or E call any welders shop at your yellow pages and get info on prices.

Title: Re: hello
Post by orovillemike on Jun 6^th, 2007, 11:54pm

well i have my comruter back it crashed
i now have a new dr too this one asked me after i told him that i dont want narcotics to kill the pain
" would you like to try o2" so he going to see if my med. provider will cover it
well that is all i have for now
read ya later

Title: Re: hello
Post by Guiseppi on Jun 7^th, 2007, 6:46pm

That is outstanding news!!!! Just remember with the 02 you need a non re breather mask at a high flow rate, up to 15LPM, it's really important you breathe pure oxygen to get the full constriction effect that knocks the CH down! I'm so happy you found a doc who isn't afraid of 02, I hope and pray it gives you the same relief it does me!

Guiseppi

Title: Re: hello
Post by Ray on Jun 7^th, 2007, 10:53pm

Welcome and I hope you find relief soon!

Ray

Title: Re: hello
Post by MR_FLOOR on Jun 8^th, 2007, 3:51am

on 05/09/07 at 18:25:57, orovillemike wrote:

the imatrix gave me chest pains shortness of breath and pain in my corotid artory

Careful with the Imitrex it can cause heart attacks.In order for me to get Imitrex prescribed to me I have to have EKGs every 6 months.Imitrex is a vascular constrictor if you have any kind of blockage it can cause cardiac arrest BE CAREFUL. Talk to your doc. make sure your ok to take it.Good Luck.

Dave

Title: Re: hello
Post by Bob_Johnson on Jun 8^th, 2007, 9:53am

If you are stuck with this doc, then print this and hope that it will get his attention. Written by one of the better headache doc in the U.S.

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)

http://www.brightok.net/~mnjday/chtherapy.pdf
-----

If you have the option of changing doc, think this might be a move to consider. You can find one via:

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org/physicians/ On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Title: Re: hello
Post by Sandy_C on Jun 8^th, 2007, 3:23pm

Welcome back, Orovillemike, glad your computer is back up and running.

And, I'm delighted to hear that your new doctor is trying to get some oxygen for you. 02 has proven to be one of the best methods of aborting a CH hit and many of us swear by it.

Make sure that your doctor prescribes a non-rebreating mask and a regulator that can go to at least 15 lpm.

Let us know what happens. We're here rooting for you!

Sandy

Title: Re: hello
Post by orovillemike on Jun 11^th, 2007, 1:54am

well no o2 yet ....... the last two nights have been hell hit after hit 3 or 4 a night get up and pace outside in my yard all night cause my trailer is only the size of a stamp thank you all for your advice

i already know i cant take imatrix it really made me sick
[smiley=huh.gif]
how do you all deal with work ? i average 2 maybe 3 hours sleep on a good night and have to work in the days thank god i dont get hit in the day time to often but im always so tired ive been writen up cause ill go sit in the brake room at brake time and fall asleep and im late getting back to work

well thanks for hearin my crap its nice to be able to dump and get feed back from people who understand what its like to live in fear of bed time!!!

Title: Re: hello
Post by LeLimey on Jun 11^th, 2007, 4:23am

Mike have you tried any of our "home remedies" yet?
Strong coffee or energy drinks such as Red bull (cheaper ones are as good!) can be very effective if chugged early enough - in other words at the first twinges. they both contain caffeine which is a vaso constrictor in the same way as imitrex and oxygen so they work by helping reduce those blood vessels and thus eliminating the pain.

A lot of us find Ice or heat works well. For me heat is a huge trigger but ice packs (or bags of frozen peas!) on the affected side of my head and the back of my neck can really help. Others swear by having a hot shower and letting the water run on their face. You'll probably know already if either heat or cold makes it worse for you so try the other - its worth a try!

Have you discussed your reaction to Imitrex with your doctor? It MAY have been just that the injections were too intense for you and a nasal spray such as Zomig might be a better option. It takes slightly longer to kick in (about ten minutes) but it lasts for up to 8 hours too blocking further hits. I don't know if you are suitable for triptans at all but this is something you can discuss with your doctor and you can't get them without a prescription anyway.

Keeping reading when you can. There is a veritable gold mine of information here and we WILL help you find your magic bullet. If you read something and want more info don't be afraid to ask, just remember that 100's of others read this site and never register so anything you ask will benefit them too :)

Wishing you some pain free time starting today
Helen

Title: Re: hello
Post by thebbz on Jun 11^th, 2007, 8:28pm

Hey Mike,
To work while in an episode is a matter of timing, being stubborn, planning and careful use of abortives coupled with transitional and preventative medications. Reconsider imitrex with a lower dose. How is the doctor treating you, I hope he or she is being responsive rather than arrogant. There are many tricks once you are armed with what you need medically. Use caffeine in the morning and daytime. Use O2 in the evening and hit the trex or other triptans at night and when the others fail to abort.
1) Listen to Helen.
2) Check your Pm's in the upper right hand corner of the screen
3) Dont be afraid to call
4) read read read the more you know the better you can fight the beast
all the best
jb

Title: Re: hello
Post by Linda_Howell on Jun 11^th, 2007, 10:57pm

O.K. Mike...I live in Redding which is just a hop skip and a jump from you. my number is (530) 224-9515

Give me a call and I will see what I can do to help you with 02. The BBz also live in Redding now. I know that Oroville is a smallish town and you may not have a Dr. that knows anything about CH much less anything medical, from this century. :-/

My Dr. is in Red Bluff....could you travel that far to get a script for 02? I have educated that man for the last 2 decades and he will do anything I ask him to.

Call me. Maybe the John, Kathy and you and I could get together before I leave for the convention on the 1st of July. We're here to help you hon.

Linda Howell

Title: Re: hello
Post by kcopelin on Jun 12^th, 2007, 11:00am

Mike,
Kathy from Redding here. What Linda said, and BBZ.

PFDAN
kathy

Title: Re: hello
Post by orovillemike on Jun 13^th, 2007, 9:59am

yah i drink more coffie then i should be aloud to mostly at night it helps to slow them down

i dont drive but would like to meet you people to

ive got to run right now im off to the sac zoo today
ill be back on later to night