I'm getting worn out.  I can't do the Red Bull thing because of my heart condition, and I have to be careful with the meds I take.  Been on Short Term Disability the past two weeks because they keep coming one on top of the other it seems.  I can't make the 70 mile drive to work and back again.  

I go back to the doctor on Monday.  His next course I know will be meds with narcotics.  Should I or shouldn't I ask him.  You all know the routine.  If I ask for them will he think I'm some kind of addic.  Will I get addicted?  

At least my wife and kids are sympathetic.  That does help.   :o

Allen, I was just wondering if you use oxygen? it can REALLY help!!!! HOw bout melatonin, it seems to help me avoind the nighttime hits. Good luck!!!!!!!  Tuck

AJ,

The old narcotics topic - I'd search the forums for "narcotic" if I were you.  I've given the same schpeal before, but here I go again:

Narcotics really don't work with CH.  They just don't.  I personally think they're great for chronic pain that's continuous, and studies show that they are far less addictive when used by chronic pain sufferers - in the low single digit %s rather than 17-18% when used for accute pain.

If you go the narcotics route, MAKE SURE your meds are being managed by a pain specialist, not just your GP.  A good pain specialist knows you need to use extended release meds like morphine sulfate ER, with "breakthrough" pain meds like Vicodin or whatever for the bad times. You just can't get "high" when you're taking them regularly with an extended release format, so the chance of getting addicted to the high is pretty low.

Still, extended release narcotics can't hardly touch CH.  And breakthrough meds take 30-45 minutes to work, and again won't touch anything above a kip 5.  It's just a fact.  I know this, because before being diagnosed I was taking 3 morphine pills a day, and 4 "breakthrough" meds - Vicodin or Percoset.  They helped me cope during the day for awhile, when my hits are in the kip 4-5 range, but late afternoon and evening, when the 6-9s come, they were worthless.  I still have a cache of them hidden away from when I stopped taking them 18 months ago, and have never been tempted to use them because they just don't help.

The true reality with narcotics is that your body will quickly develop a resistance to them, and they'll lose what little pain-killing ability they had anyway.  After 18 months using them, they were worthless.  Even if you don't become "addicted," you WILL develop physical dependance, so when you stop using them you'll have flu-like symptoms for about a month (for me, at least).  I also became more and more fatigued the longer I used them.

I'm not anti-narcotic at all, since I think they're extremely useful for other conditions.  They just don't work for CH.  If you search the forum, I don't think you'll find anyone who says they found narcotics helpful with this particular afflication.  And since we have people who swear by psychadelics, it's not just that everyone is anti-drug.  Just about every other medication has a group of proponents here who say it's their magic bullet, but I've never seen anyone say that about narcotics.

The best thing to do would be to list out everything you've tried, and everything you can't take because of your heart condition, and I'm sure alot of people can suggest other things to try that have actually worked for them.

I forgot to mention one imporant thing about narcotics.  Before I started them I had suffered 7 years, but the HAs came and went.  They seemed really bad for awhile when I finally begged the doctor for pain killers, and he referred me to a pain specialist for narcotics.

Anyway, long story short I became chronic.  Not just chronic, but daily.  It may have happened before I started the narcotics, but I've seen a couple of articles suggesting that narcotics can cause the dreaded transformation from episodic to chronic.  I can't blame the narcotics for sure, but I'd give anything to go back and tell myself never to have started them just to find out.

Thanks!  I'll keep that in mind when I go to the neurologist  on Monday.  

aj I agree with a lot of what chappy says.

Though there is the occasional but very rare clusterhead who claims success with narcotic pain killers, narcotic medications for many if not most of us can increase the hit frequency and pain levels unkowingly untill usage stops.
My feeling has allways been if a med causes drowsiness its not good for CH.
I would be concerned if doc suggests narcotic meds.

There are far more effective medications that many here believe strongly in. Read on. Hopefully someone will post a link for clustermeds.

Sounds like your getting hammered, been there done that. Hang in there.

Got my O2 yesterday!  It works like a champ.  At the first sign of the beast (mine shows up with the knot and eye swelling/twitching) I tried it thinking "how on earth is this going to stop the beast?"  But it did!  I was able to abort 6 attacks in 24 hours.  WOW!!!  

This was the first time that the O2 crt/supplier had ever used o2 for CH's, so she was very happy when I called and told her that it REALLY worked.  

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Sweet!

I don't know what you do for work but I bring O2 with me when I go.  Keep an e-tank in my office and one in the car.  Never go anywhere without it.

If it make sense, have that supplier give you 5 or 6 e-tanks, throw one or two in the back of your car and go back to work.  

Go get your life back  8-)

-Dennis-