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        Cluster Headache Help and Support >> Cluster Headache Specific >> Going to the doctor/questions
        
(Message started by: MattyMVP on Sep 26^th, 2006, 3:03pm)

Title: Going to the doctor/questions
Post by MattyMVP on Sep 26^th, 2006, 3:03pm

Hello All,

Brand new here, and you don't know how much I wish we were all here under different circumstances. Glad to have found some support, though. I've been episodic for long about ten years now. My last cycle was February 2005, and I had actually harbored hope that the Beast had left for good. I can't be alone in that. But alas, I'm in a new cycle now -- about ten days in.

Anyway, a few questions.....

I'm going to the doctor (regular physician) in a couple days. I'm on Imitrex nasal spray, 20 mg, and I mentioned to his nurse on the phone that I was having attacks twice a day, and therefore using the spray twice a day. She said that I shouldn't be using so much Imitrex and that there are better treatments. But the Imitrex has mostly worked for me. Has anyone ever been taken off Imitrex and prescribed something as good or better? I'm leery about this doctor's visit, to say the least.

---Anyone ever passed out from the pain?

(I never have, to my great disappointment. I cannot understand how I DON'T pass out sometimes; the pain is so intense. This is usually about the time that I am literally praying for death and making deals with God. I wish I was joking about this.)

---How many of you have gone from episodic to chronic?

(This is my greatest fear; that my life will just have to stop.)

Regards,
Matt

Title: Re: Going to the doctor/questions
Post by Karla on Sep 26^th, 2006, 3:42pm

According to the physcians desk reference manual you can take up to 40mg of imitrex nasal spray a day. So you could have 2 20mg ns OR they also come in 10mg ns. I get the 4 10 ns and it aborts 4 ch for me. Yeah!! It is one way to stretch it out. So many people misunderstand because we need so much imitrex they think it isn't working correctly for us. They couldn't be further from the truth!!! You need to educate them on how many ha a day/ week/ month/ you get and just (graphically) describe how bad the ch are for you physically and intensely compared to anything else you have been through. That may help them understand what you are going through and just how sever it is.

Good luck.

Title: Re: Going to the doctor/questions
Post by prcole18 on Sep 26^th, 2006, 4:09pm

Hi Matty & welcome

Hi, I use Imigran (Imitrex) injections & swear by em! You are only supposed to use nomore than 2 in 24 hours but sometimes I have to use more than this, which I know is dangerous but is my choice.

I have very nearly passed out with the pain a couple of times on a kip 10, infact I know if the CH hadn't have gone shortly I would have done for sure.

I did go from Episodic to Chronic. I am currently trying to find my right dosage & right med to keep them at bay.

To be honest I used to worry about being Chronic & then I realised i was :-/ after speaking to a few people who helped me on here. Oh & by the way your life dosen't stop being chronoic ;)

Don't worry about it though with the right med & right advice you will hopefully be ok, you've come to the right place.

Paul

Title: Re: Going to the doctor/questions
Post by Poli on Sep 26^th, 2006, 4:54pm

---How many of you have gone from episodic to chronic?

(This is my greatest fear; that my life will just have to stop.)
_________________________________________________

I have gone from episodic to chronic, now again episodic (at worst) with the psilocibin treatment. Seven months painfree. No fears, life is in it's best moment.
Saludos
Poli

Title: Re: Going to the doctor/questions
Post by marlinsfan on Sep 26^th, 2006, 5:26pm

Poli, I stopped taking imitrex the day I discovered Oxygen, thanks to this site.

Episodic for 24 years.

Un abrazo,
Jose

Title: Re: Going to the doctor/questions
Post by TxBasslady on Sep 26^th, 2006, 6:55pm

May I assure you that even if you went Chronic...your life would't stop.

There are many Chronic's here. They hold jobs, raise their children and most of them get by just fine.

I've never passed out from the pain....but like you, there were times I wished I would. Deal's with God ?...oh yes....most of us have done that at one time.

Take CH one day at a time, Matty. Try to not worry about when or if the next hit is coming. Don't let CH rule your life or change your normal routines. I'm a firm believer that if you dwell on it...or become obsessed with it...it'll get worse. This is only my personal opinion...but in the past when I let it really get to me...I swear it just kept on...with no end in sight.

Work with your doc...give things time to work, and if you see that something doesn't work...try a different route.

There's lots of home remedies...all this info is here among the posts. Read the links to your left...print out any info you want..and take it to the doc when you go.

You might also consider a headache diary. This way you'll see what has/has not worked for you. This is a valuable tool for you, and for your doc.

Lots of good luck to ya,

Jean

Title: Re: Going to the doctor/questions
Post by Dave_S on Sep 26^th, 2006, 10:56pm

I went chronic after about 8 years now while I still may qualify as chronic it is nothing like 2 years I spent 2 hours on two hours off non stop after 14 days of that you start to pass out from the pain and exhaustion I have spent hundreds of hours sitting on the edge of the couch drifting in and out of conciseness the pain is so bad if suicide were not an immediate option I would have taken my life often I held a loaded firearm in my hand counting to thirty if I could not take it any more I could end the pain I was never suicidal in the sense I did not want to live I just needed to know I was in control so I could count to thirty one more time that got me through a good year and a half of the worst times until one night tears in my eyes the gun was in my mouth from a physc stand point it was a long and interesting night. I no longer use that particular crutch to get by now I have copious amounts of opiates to the doctors that say opiates have no place in the treatment of CH you sir or madam are so full of BS you should not be practicing medicine. I know for a fact they work I did ten years 2 of them complete hell an invalid unable to care for my self just PAIN and there is nothing more we can do from you fine doctors well me no rocket scientist but for pain they have pain killers my teenage daughter bought 4 pints of morphine off the streets which made me functional enough to find a doctor who left me in hell while he tried everything he new then he took the lid off the pain medicine It is not cheap but I recommend phentanal patches and pint size bottles of morphine Of cource I am told I will become an addict whatever the hell that means I use the same dosage of pain meds actually less than when I first started I have run out just when my doctor left for a week RR so 0 opiates felt like I had a mild flue I sure as heck have never once experienced any high from these drugs just less pain still some pain a lot some times but not a damn invalid because most doctors universities and the like are full of shit they leave you to die litterly because why I know not there afraid of some government interference in there performance of there practice of medicine I think in English that means there spineless and do not give one ounce of hu8minity for the people there supposed to care for just the easy dollar. If it hurts you might consider pain medicine it treats pain.
Boy am I full of it tonight
Dave S

Title: Re: Going to the doctor/questions
Post by MJ on Sep 27^th, 2006, 12:43am

on 09/26/06 at 22:56:16, Dave_S wrote:

I went chronic after about 8 years now while I still may qualify as chronic it is nothing like 2 years I spent 2 hours on two hours off non stop after 14 days of that you start to pass out from the pain and exhaustion

I just needed to know I was in control so I could count to thirty one more time

I have copious amounts of opiates to the doctors that say opiates have no place in the treatment of CH you sir or madam are so full of BS you should not be practicing medicine. I know for a fact they work

If it hurts you might consider pain medicine it treats pain.
Boy am I full of it tonight
Dave S

Matty

Like Dave I have passed out from the exhaustion of the battles frequently.

I have been chronic a few times, I just consider them extended cycles.

DaveS
I understand excactly where you were at. My first 3 year episode was like that as well, pain killers and drugs were being used in quantity. Never once did I put a gun in my mouth but I definately had to believe I was in control. Even if I wasnt totally. It was natural adrenaline I sought after. Did some crazy stuff trying to outrun the pain.

Regarding narcotics, for me the drugs you mentioned barely even dent the pain. If they work for you thats awesome.

In fact I found that the following extended and every cycle since, were every bit as rough, being med free made it all a lot clearer and definately easier to fight those extremes. As unlike you I got no relief from drugs just more pain.
I believe the drugs were also responsible for extending the cycles for me at times.
If the Doc is away, this may be a good time to test the theory for a few weeks and see if maybe the cycle might end. ( then try custerbusters) ;;D
Not ragging on you. The flu like symptoms are a sighn of dependence. If the sweats begin then well....
Psylocibin and LSA have been tested and found to be beneficial in overcoming dependence on other drugs as well. It may be worth a shot.

Title: Re: Going to the doctor/questions
Post by chopmyheadoff on Sep 27^th, 2006, 5:20am

hiya mate - i feel you with the suicidal bit !!
iv been chronic for 7 years - its certainly not life over.

especially now i can actually abort them with imigran.
for the first 6.5 years i was told i had stress and told to cope with it !!!

now that nearly did push me over the edge !!

mate - you dont mention preventatives. i take 480mg verapamil every day and i am mostly pain free !! i have the odd one break through that i kill with a stab of imigran :P

ask your doc about preventatives.
note - he may be reluctant to prescribe verapamil as it is intended to be a heart drug - if he is then you should be seeing a neurologist anyway .
peace

chop