I am interested in whether anyone has used demerol for pain management. Back about 10 years ago, I had "big" Motrin pills for when I had an attack and that was it. The first time I got really out of control I was taken to the ER. They gave me a shot of Demerol. I immediately threw up and my head cleared. Upon  later discussion with my Neurologist, I got some Demerol pills to supplement my O2. But he only prescribed me 5 pills.

I have a new Neurologist now and my headaches are so bad at night that i'm up half the night with O2. I've asked for Demerol pills and he has said he doesn't like to prescribe them??? I feel they would help me thru some bad night times and periods where I don't have access to O2.

Anybody else use them? :-/

Have you discussed other preventative treatments with your neuro? Stuff like verapamil, lithium, etc.?

Narcotics are generally viewed as being pretty ineffective with this condition, and they cause rebound headaches.

Rarely are pain meds of any value for CH. If O2 isn't giving relief, then need to explore any of the seveal abortives which have a good track record for stopping an attack.
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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)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

Opiates are definitely not the course I would want to take.  Did that about 30 yrs ago when I first was diagnosed w/CH.  My dr didn't know any different, and I nearly got hooked.  Was very difficult getting off of them.  They didn't do anything for the pain, I just didn't care.  I didn't care about anything except the next pill.

I strongly suggest you find a Dr who is experienced with CH, or at least is willing to learn about the most effective treatments.  I understand the sleep deprivation.  We all know what that is and what it is like, but it is not worth becoming dependent on pain killers that do nothing for the actual condition.

You said you are on O2 for long periods.  What kind of mask are you using, and at wht flow rate?  Those two things make a tremendous amount of difference.  Check out the oxygen info button in yellow on the left.  Feel free to ask if you are having questions.  BTW, I highly recommend the Op2timask from Linde available from the CH.com store (button on the left), or available elsewhere.  I recently got two and they really are MUCH superior to the old non-rebreather I had used before.

Jerry

Callico wrote on Aug 13^th, 2009 at 1:04pm:

My dr didn't know any different, and I nearly got hooked.  Was very difficult getting off of them.  They didn't do anything for the pain, I just didn't care.  I didn't care about anything except the next pill.

I don't want to be the one to break this to you, Jerry, but you WERE hooked.

You probably know that.

SO much better now that you're not.

Previous posts are spot on for why narcotics aren't an ideal first choice.  Not surprised your Neuro wasn't thrilled about the Demerol.  Of course, realize that it has nothing to do with whether or not he/she trusts you; it's just that people "in the know" (especially Neurologists familiar with CH) know there are more appropriate alternatives.  Ideally, you use narcotics when you've exhausted all of your alternatives, or the alternatives are impractical for whatever reason.  They're intended to be a last-resort, but prescribing habits these days might suggest otherwise  ::)

It may seem like you're getting the cold shoulder, but it sounds like they are trying to keep your interests in mind.

Bucco,
It was probably the throwing up that ended the hit and not the drugs.

karma wrote on Aug 13^th, 2009 at 8:10pm:

Bucco, It was probably the throwing up that ended the hit and not the drugs.

If this was the case, then why the hell doesn't my vomting end my hits? :P

Even though you might not want to believe it, SOME of us are not narc resistant. I'm not. They work fine on me, HOWEVER, it is NOT the route you want to go.

It's also not a route doctors are going to want to go. There are a lot of other treatments that work better.

Demerol didn't do jack shit for my hits, they gave me some at the ER, the beast laughed at it hystericlally

There are better treatments that can relieve your pain a lot faster, and for a lot longer, too. Same with 02, how were you using it? There are adjustments that can be made to help it be of more use for you!

HOWEVER: To anyone who does decide to use narcotics, or who has run out of options... Keep shit open and honest with your doctors.

If a pill is just fucking you up and not helping the pain, you are on the way to addiction town.

If you have to lie to your doctors about how much of the medication you are using, you are on the way to addiction town.

If the only thing you can think about is your pills, then you have arrived at addiction town and may want to see about getting a bus ticket out of there.

I'm going to pass back out now. Good luck in finding something that works for you~

Please go to the General Posts board and read the "Dancing with the Devil" post in the upper section of the board.  If you want to continue with narcs after that you are on your own.  This is not intended as and attack, and I hope you don't take it as one.  It is because I really care.  I was not in the same shape as Svenn, but I know how hard it is to quit.  Every time I see someone posting about using Narcs or their derivatives I get scared for you.  It has been almost 30 yrs and I still get urges at times to try "just one" when it is getting tough.  I don't even take them for other pain anymore.

Jerry

karma wrote on Aug 13^th, 2009 at 8:10pm:

Bucco, It was probably the throwing up that ended the hit and not the drugs.

My first thought as well.

Hello All-This is my first post.  I'm a 30 year old male.  In decent shape.  I'm active.  Eat well.  Generally healthy.  About 6 months ago I woke up with a headache that was making my eyes water.  I stumbled to the bathroom for tylenol and I couldn't walk a straight line.  Bounced from wall to wall on my way to the medicine cabinet.  Took three tylenol and curled into fetal position behind my toilet holding my head so tight I thought I would crush it.  Two hours later it went away.  The next evening the same thing.  And it kept repeating for almost a week when I went to the doctor.  She ordered the CT scan and diagnostic work.  Nothing abnormal.  Gave me percocet for pain.  When the next one hit I took the 5mg percocet and then another finally the third in 1.5 hours I felt it going away.  I knew at that point that percocet wasn't the answer.  I couldn't take three narcotic tablets multiple times per week and maintain my career/family/other duties knowing that tolerance would build causing more and more narcotics.  Doctor then prescribed topomax.  I'm up to 100mg per day.  The dopey/drogginess is wearing off-finally.  Not happy about taking this drug but it seems to lessen the frequency.  They are still occurring once a week or so.  I dread them.  I fear them.  Been to the ER twice for hydromorphone(sp?) injections.  That seems to work quickly (I don't really remember it-thank goodness for a spouse to help me get into bed afterwards).  Looking forward to discussing oxygen therapy with my doctor after reading the posts on this site.  My doctor is great.  She doesn't know a lot about migraines/cluster headaches-but she is researching a lot.  I get periodic emails from her with articles that she has read to try and get me some relief.  I'm taking her info about oxygen next time I go in.  Thanks again everyone for all the information.  It's really appreciated!

Hello Oskar it's nice to meet you.
First of all I am so glad you have such an awesome supporter in your wife - she sounds wonderful! That's the greatest weapon against this thing any of us can have so make sure you look after her y'hear?!!

"Ordinary" pain killers aren't the best thing for this type of pain in any way as they simply don't work in the way that's needed.

CH is a vaso dilating headache so we need vaso constrictors to reduce the pain. Triptans such as Imitrex injections are the fastest but there are many types and some people prefer zomig nasal sprays. It bears looking into for you. You'll find a lot of info on this site and also on START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I don't want to overwhelm you with too much in one post so I am trying to just give an overview of possibilities so that you can come back with further questions instead of being buried under a mountain and having to sift through it!

Oxygen is absolutely my "drug of choice" - I swear by it. I couldn't be without it. I can abort an attack in 5-7 minutes using my optimask. If you do get prescribed oxygen - and we can help you with all the info you will need for that - I can't recommend buying an optimask highly enough. It's the single most life changing experience I have had with CH.

Your wife will be welcomed with open arms if she wants to come along to the site and post too. Supporters are prized highly here and she'll be assured a very warm welcome!

Pull up a chair, chat, get to know us and let us get to know you. This is a great family to belong to and we'll help you all we can  :)

Helen

For 14 years I had the devil living in my house and at least once a week I would get rid of him with 1500 units of demerol and if that didn't work I would be given another 1500 units which would generally do it. Those episodes required a recovery time of 3-4 days. Then I discovered that 2 shots of everclear or good shine only required a recovery time of about 4 hours and was a lot cheaper. Dr. Kudrow was just getting his O2 theory going. The O2 was amazing and I used it for ten years and then the devil left the building.....for 25 years. Now he's back and I'm having problems getting the O2 from the suppliers. They all want me to have a saturation test and a generator before they will give me a portable tank and regulator. Lincare is changing their business model so they will no longer just rent tanks and regulators  >:( Anyone else having this problem? )

Tank

Agree with Karma.  Barfing will end a hit for me.  Taking too much cafergot during a hit would upset me stomach.  As soon as I heaved, the attack would end.  Since some serotonin is made in the gut I wondered if there was a connection there.

In 1994 I was admitted to the VA Hospital in Dallas for a suspected heart blockage during an extremely nasty cycle.  At the time they had me on enderol as a prevent and it wasn't until several years later that I found Imitrex and several years after that before I was introduced to O2. 

Because of the suspected heart problem, they took me off of the enderol while I was there and I was in the peak of a cycle with 8 to 10 hits a day.  My assigned doctors solution was morphine thru my IV and I can assure that, at least for me, it will knock out a hit just about as fast as Imitrex.  Of course I was just there for a few days and once they had ruled out heart blockage it was discharge time and back to enderol.

My other experience with narcotics was in 2006 just prior to my finding this site.  I was in an extremely severe and abnormally long cycle and had reached a point of complete mental and physical exhaustion.  I went to see my doc and because it had been years since I'd had a cat scan, He became concerned that it wasn't just the clusters causing the pain and sent me to a pain management specialist who ordered a MRI.  When the results came back normal his solution was fyntenal lolly pops which are normally prescribed for break through pain in terminally ill cancer patients.  To be quite honest, at that particular point if he'd have told me to bend over and stick bb's up my arse to give me some relief, I would have done it so.....off to the pharmacy....nope...insurance won't cover this $900, 30 day supply of suckers....back to the doc for a letter of medical nessesity....oh, I'm sorry but he has left for reservist active duty and will be gone for 30 days!!!

Desparate, I went back to my PCP who gave me a referral to another pain doc.  I told him the story and he agreed, that under the circumstances they needed to control the pain so I could get some rest and they would worry about dependency later!!!!!  While the insurance company was reviewing my case for medical nessesity I found this site, learned about O2 which proved to be very effective for me, and when the cycle ended I just quit fightin with em!!

I don't know if they would have worked or not but at the very best they would have just covered up one problem and created an even bigger one in my opinion even though at the time I could have cared less about the consequences. 

I'm just so grateful that I was able to find this site and the information that has allowed me to turn a completely unmanageable situation into a tolerable one

Dallas Denny

I was given a Demerol shot one time when I went to the ER, prior to knowing it was CH's, and it didn't do much at all.  I got loopy, but I could still feel the pain.  It was quite strange.  Pain, but I couldn't react to it the same way.  The next time I went in, they came at me with the shot again and I refused it.  Not again, no thanx.
That was the one and only time. I don't recommend it.

Angela

When I first started getting my Clusters this is usually what ER gave me, (Demerol)....I did not like the high I got from it....the pain relief was mediocre but I was desperate for any relief. However now the doctors in my ER said the treatment they use most now for people who cannot take triptans (me) or for whom triptans do not work for is an IV drip with Fentanyl and Zomig. This does work the best and Fentanyl does not give a high like other Narcotics.....The Fentanyl does work for me to knock out a CH episode or at least knock out the duration and intensity. Running at least two bags of water in helps as well. I cannot take triptans, they make my chest too tight, arm numb and I have asthma....Oxygen by itself does not help me enough usually, however I am still going to pursue getting oxygen for at home use anyway.

Ummm.... Zomig is a Triptan.

Marc

Ok 54 year old man had clusters (chronic since Nov. 1999) (before 17 years fall and spring only). First I must say after 67 different meds in many combo's for 16 years. Even had my trigeminal nerve cut at the Mayo Clinc  in Minn. in May of 2002 (which I got a little over 4 months releif only to come back full force).
Ok this is what I take for my clusters right now since 2006. I wear a fentanyl 75/mcg/hr and for the bad times I take a 10mg morphine shot. I am only allowed 12 per month and can take 3 in a 24 hour period (which has happened about 5 times since 2006). I get these shots refilled about every 45 to 50 days. So I dont go every 30 days refill it to have more here than I really need. Now PLEASE let me say that EVERYONE is different how they get thur the pain. I have two  O2 tanks with proper equipment but sorry to say dont work for me BUT there are so many people is has worked well for.  And I have read about Svenn's bad dealing with the morphine. My wife is a CNA and trust me she would tell me if I was hooked on it. Well thats all I have to say about this.
Terry

Tank,

Check your email...  Your O2 suppliers at Lincare are full of crap if your doctor sent them an Rx for oxygen therapy to abort your cluster headaches and they're not filling it until you have blood gas or oximetry tests...   

This is pure BS!!!  These tests are not required for cluster headaches...  They're making you conform to rules for COPD sufferers NOT A CLUSTER HEADACHE SUFFERER!!!   

Call Lincare and ask if your Rx for oxygen therapy states it's for cluster headaches...  If the Rx indicates cluster headache is the condition being treated and they still refuse to deliver it, call the cops!  These idiots are practicing medicine without a license as they're interfering with a doctor's properly written orders...

If "Cluster Headache" is not in the Rx held by Lincare, call your doctor and have him send a new Rx to Lincare with "Cluster Headache" as the condition being treated...

Take care and please keep us posted.

V/R, Batch

Bucco wrote on Aug 12^th, 2009 at 9:04pm:

I've asked for Demerol pills and he has said he doesn't like to prescribe them??? I feel they would help me thru some bad night times and periods where I don't have access to O2.

I agree with your neuro.  He apparently knows what and what not to use.  Try melatonin for a good nights rest and maybe verapamil or even psychedelics as prevents.  I'm sure your neuro has discussed prevents with you.  O2 is the winner for aborts.

narcticstriggermych

saxman wrote on Dec 24^th, 2009 at 5:12am:

narcticstriggermych

Huh???

I recently tried demerol pills well actually meperdine which is demeral and an antianflamitory I think but anyhow the big thing being demerol.  Didn't work.  Best of luck to you. 

Meperidine is straight Demerol, nothing added.

Marc wrote on Dec 9^th, 2009 at 9:52pm:

Ummm.... Zomig is a Triptan. Marc

oops
not Zomig....Zofran... they look too similar, cannot think straight when I am having a cluster spell. Was having one then and having one now.

How do you work on the puter during a hit?

Why were you on Zofran? 

Zoan is used for the prevention of nausea and vomiting caused by radiation therapy and chemotherapy for cancer, and, in some cases, to prevent these problems following surgery.