Okay, so progress with my head has been unbearably slow. I have been suffering from massive attacks for the past year and a half, with no respite, no cycles, no nothing. The current medications I've been put on is high dose verapamil (going up to close to a gram a day, but not there yet- 480 mg right now, the quick release stuff 4 times a day... I take two in the morning, then 1, 1 and 2). The most recent diagnosis is atypical clusters; "atypical" does nothing for my treatment because it leads to more stabbing in the dark.

I went to Thomas Jefferson and I'm sad to say it was the most useless, overhyped and frustrating doctor appointment I've ever been to. This "five hour appointment" was 3-and-half hours of waiting, 20 minutes with the actual doctor, and I thought he was an a-hole. All he did was put me on the verapamil, which is fine, and Sumavel... even though Immitrex has NEVER worked for my head and continues not to. The Sumavel gives very, very little relief. Takes the worst edge off, but that's about the best it does. My relief from triptans in general has never been really all that marked. By the end of the summer it looks like I'll have an appointment with the Cleveland Clinic.

I also take percocet when the headaches get really bad, and that works on occasion. I do get absolute and immediate relief from IV opiates when it comes to the emergency room and I get a sufficient dose. I am well aware opiates do nothing for most CH sufferers, but they do for me. Plain and simple. I am with a headache specialist in NYC now who knows very well about clusters and is the one prescribing the percocet, and the sole reason he does that is because I get relief from it.

EDIT: Am also on O2 as an abortive. Does not help. At 15+ LPM (Dr. said try whatever I need.)

So here's the question: now that it's been a year and a half with no break, I've been on amitriptyline, topamax, verapamil once before (though probably not a sufficient dose), and indocin (when my HA specialist thought it was Paroxsysmal Hemicrania). Do you think there will ever be a right time for me to float the possibility of adding ER opiates to the regimen to see if it does anything WITH the verapamil to help curb these? Or IM injecton as an abortive?

I had five surgeries on my back beginning in the fall of 2008. The second to last of those left me with an infection that no one knew I had and caused me to be in severe, debilitating pain that required the use of extended release opiates then, for five months. This was before my headaches. Unfortunately, I had to deal with the inherent problems of tolerance and physical addiction, and after that decided to go cold turkey when the time was up because weaning did no help.

Because of the above fact and because I know first hand the negative side effects of opiates, if the only thing you have to tell me about this is the ineffectiveness of opiates against CH or the problems with tolerance, addiction, and withdrawal, I respectfully request you do not respond. That is not my question and I am well aware of those issues. I'm not trying to be rude, but I know. I know. The reality is everyone is different, and though opiates are generally not the answer this would absolutely not be first line treatment. Perhaps this is not a question for my HA specialist but a pain management doctor, though OF COURSE if I went that route I would continue working with my HA specialist and have them work together.

Again, I beg of all of you who are on an anti-opiate crusade to refrain from beating me up about this. I understand the negative feeling towards these medications because for most they do no good and the problems associated with them often outweigh the benefits. So, again, I respect your efforts in helping to keep those who don't ever need them off of them, but I've been there and done that.

If, however, you have an honest and thoughtful opinion about this... please, I'm all ears. This may or may not be an option to pursue for various reasons, but physical tolerance and addiction is no longer the first of these reasons, for me. Thanks to all.

Quote:

The current medications I've been put on is high dose verapamil (going up to close to a gram a day, but not there yet- 480 mg right now,

Unusual Immitrex doesn't work, but you are increasing the verap and recently arrived at 480mg. 

There have been times I've already been on 480mg of verap for a long while, which can usually hold things ok, but there have been times that increasing to 720mg was needed for short periods to arrest the breakthoughs.  Even 900mg a couple times.  Check with your doc.

If you are recently increasing the verapamil, do it gradually and it needs to be given time.

Oxygen is a good abortive.

The duration and complexity of your medical history puts our experience and counsel likely not useful or effective for you.

That Imitrex has not worked (normally 90% effective) hints at the possibility that a different syndrome may be working, i.e., cluster-LIKE headache. These are quite different conditions which mimic Cluster but which are not primary headache disorders.

Medical literature on this issue is slowing increasing and so this concept is only a tease for your doctors to look at you with fresh eyes. But, suggest you print out the following and ask your docs to consider.....
==

Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
===
Troubling to hear about the Jefferson experience but we all know that one jerk doesn't make the system--thankgoodness!

This gentleman posted last year, obviously a meticulous record keeper who appears to have succesfully used this route.

Title: Chronic, Narcotics, Remission
Post by MikeS on Nov 8th, 2010 at 1:59pm
--------------------------------------------------------------------------------

      I have suffered CH for more then 20 years now. I have been Chronic for about 15 years. I have had migraines most of my life, however they were only moderately painful and never caused me to miss work. I started getting CH attacks when I was 33 years old, had 7 children and fortunately at GREAT Wife.  After 3 years of episodic attacks (3-4 weeks a year) my cycles started coming after 6 months, then 3 then they never stopped. I was chronic.   

    After my 3rd Neuro I was in luck. Dr. Savia my Neuro during 10 years of my CH was a very organized and methodical Dr. He took the time to explain each treatment and not only wrote exactly what was done at each Appt but also voice recorded some during and after the visit and transcribed each Appt. We tried Calc. channel blockers, Sansert, Anti seizure meds, Lithium, Prednisone for short bursts, Neurontin, d flow up to 30 lpm),     We did IV DHE, Trigger point injections of Local lidocaine which my wife learned to do. Monthly steroids in the trigger points from the Dr., , Zornif Topomax and many others. Side effects were many and some were serious. O2 which would stop my first attack, however within 2 hrs I would get an attack that O2 helped with about 30% of the time, any other attacks during the day would never respond.(I had someone from the O2 company, who was a friend whose company also did our welding O2), help me configure a mask that would flow up to 30 lpm. Imitrex never helped with a cluster. However Imitrex Injections were great for my migraines After several years of use I became allergic to promethazine and compazine. (I got something called  Tardic Dyskinesia (spelling?) and was in the hospital for a week and I have no memory of anything past the time I was admitted). The above meds did help quit a bit. I could get through most nights without an attack and at my best I would get maybe 16 Attacks a week. The common problem was that even after titrating me to the max dose, I became resistant to the meds that did help. 

     After a  4 week inpatient stay at Diamond Headache clinic they told me that the best I could hope for was maybe a 50% reduction in attacks. They said that even though Clusters & Migraines have little in common they were somehow indirectly feeding off each other making it extremely difficult
to come up with a decent way to help me. 

   Ok now to the opiate treatments. Because my Neuro was such a perfectionist with my records he definitely saw a pattern that clearly showed a Decent response to opiates and even more so Methadone. At Diamond they would give me a Doliphin (methadone) injection which really helped with my attacks. After the 2nd week I found out that dolaphine was a different name for methadone.

  I was now ready to try surgery to freeze a nerve (Trigeminal?) During the first part of the surgery I was to receive stimulation of different nerves or areas of nerves to pinpoint where to go. Upon being wheeled in to the operating room I got a full blown Cluster. The surgeon that brought me in had never actually seen a bad CH.  I couldn't proceed with the surgery without being awake and holding very still while they needed to trigger the nerve receiving the pain from the Ch. This Surgeon was part of a pain clinic that did opiate/methadone
therapy. After getting my records (about a 4 inch stack) they thought that because other methods had not been effective over a long period of time I would make a good candidate for opiate or methadone therapy.  By this time I had read so much against narcotics that I said "No way". He asked me to come back in to discuss other  options. I brought my wife with me.  After a huge a[size=10][/size]mount of info on correctly prescribing and using opiates for long term pain and as much research and reading I could find on the subject my wife suggested I try it.  She was instantly a partner helping and encouraging me every step of the way.

        Dr. Webster (Anesthesiologist who practises  and operates a fairly large clinic devoted only the research in Pain management) had seen several of my attacks and had helped with pain management on several Ch patients. He was only willing to take me as a patient because of the well organized records I had along with the fact that I had tried other types of meds for so long as to show pain management was all I had left.       Dr. Webster had a lot more to offer me then just pain management. He said if I would stay with him and follow exactly what was prescribed he thought I could possibly have far fewer attacks with much less pains. He said if no allergic reactions showed up my side effects would be minimal. After blood and urine test to verify what meds I was using and no illegal drugs. It started.
 
   After 7 months of very very slowly titrating methadone to a certain level, using morphine for breakthrough,  It happened! my CH attacks went from at least 3 a day to sometimes less then 1 each day. Not only did the frequency dramatically decrease, they would come on much slower, with enough time to go home from work (I only live 5 minutes away) or drive for about 20 minutes before the pain was bad enough to have to stop driving. After a year I could work 20-30 hrs a week. I do get some bad days where I miss work a couple days. I also was required to keep a consistant schedule of sleeping and eating times. starting my meds at 5 am and getting out of bed and doing some light work for a couple hours.   The unexpected for me was the very minimal side effects. I never felt high because of the very gradual titrating of my meds. The biggest problem I had was forgetting doses.

      The last 12 months have been very good to me. When I went chronic with my Ch's I noticed a few unexpected changes. One of these was that I could no longer eat anything spicy without a bit of swelling of my tongue and very uncomfortable burning, as if I had eaten a habinero pepper. Even the mildest salsa and ketchup was enough. I loved and ate spicy food all the time prior. About 9 months ago I could easily tolerate somewhat spicy food again and it just kept getting better. I also noticed that my methadone was making me tired. (Something I had never noticed before because of the slow titration the Dr. used). So I went down on the dose waited a few days then went down a little more waited, until I didn't feel tired. If I went down even more after 10 days or so the number of Ch attacks increased until I went back up a little on my dose. Every 20-25 days it would happen again. I was only taking  a little over 30% of what I was taking 7 months earlier. Going down on the methadone gave me some side effects. The worst was cramping of my legs especially my thighs and I was  becoming a bit anxious and moody. I had virtually no urge to take any meds for the withdrawal. My Dr. said that was only possible since I had never exceeded my dosage without his OK therefore keeping the Euphoria at bay.I started using effexor and after 10 weeks I was at dosage my Dr. wanted me to be on. three days latter I didn't get a Ch and 100 days later I still haven't had one. I am off my methadone and haven't used any other narcotics (used for breakthrough) since I have had no Ch.

   I was very fortunate and/or blessed (take your pick). I had a wife who has some medical training, tons of common sense and a willingness to stand by me through it all. I can never repay her. I do try however. I do all the laundry (after she trusted me to? lol), The dishes and anything else I think will make her life a little more pleasant. (Sorry I don't mean to say I am some great kind of husband, I am just saying how much I truly appreciate her).

  Am I cured? maybe not, It has been over 15 years that I have gone any more then 5-6 days without a Ch. And only had 5-6 days in a row Ch free 2-3 times. Did the methadone and opiates cure me? most likely not. Would I use them again? Yes.

Would I recommend this type of treatment to others? No, I would recommend you find the best Ch. Neuro You can and let Him/Her recommend what you should do. Thank's for all the help and encouragement and caring!
MikeS

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If you haven't already done so, checked this link out, it's helped many when traditional medicine failed them. Wishing you peace and some pain free time no matter which route you take. Please keep us updated, it's what helps keep our knowledge base current.

Joe

Guiseppi, thanks, that is extremely helpful.

Edit: and I will be sure to keep you all updated. There truly doesn't seem to be any other cause behind my headaches; I've had exhaustive testing to check for all kinds of things, though I can certainly ask my HA specialist if there's something else he can think of or bring in some of the things from here, although I know for a fact he reads this forum. (I tried to tell him something I learned from here and he said "I know, I know, I read clusterheadaches.com and all the other ones.") So I do consider him incredibly well informed, on board with me, and determined to help. I have an appt on July 14th, I'll let you know what happens.

I have been on the fentanyl patch for 10 years and been completly pain free.  I to had very little luck with all the meds I tried.  A very long list of meds to be exact.  The oxygen and lithium quit working for me after a time so I was stuck with little options.  Went to a ha clinic and verified I had tried everything out there at proper doses and was put on fentanyl patch 50 mcg every 3 days.  It has litteraly given me my life back.  I pray the day never comes when It quits working.  I used to get 8 hits a day each 1 1/2 hours long and was chronic and suicidal.  I tried methadone but was such a zombie on it I had to go off.  You may want to consider trying the cluster buster methods.  I tried one and was pain free for over 5 months but then it quit working for me as well.  Good luck finding something that works for you.

Quote:

Do you think there will ever be a right time for me to float the possibility of adding ER opiates to the regimen to see if it does anything WITH the verapamil to help curb these? Or IM injecton as an abortive?

I guess I'm not clear on what you're asking. I'm not sure to whom such a question would be addressed except your doc. Most of us have had to resort to opiates at one time or another, and no, they have not worked for me. They work for you? That's between you and your doc. I would note however you are still on the low side for both verapamil and O2. It seems to me you are looking for permission rather than advice. If permission: go for it, under the care of your physician. If advice: perhaps explore higher doses of verapamil (I'm on 640 and counting), verapamil + lithium or something, and O2 with a demand flow valve coupled with energy drinks. Or try them all. I was willing to try about anything, including rubbing sticks together while mumbling if I thought it would help. The good thing is you have not given up. Don't. Keep on it and find what will work. Perhaps a high dose of antihistamine will turn the trick for you. You never know. So while I will not endorse the route you are on, I understand your need to find relief. Good luck, keep us informed. Blessings. lance

Thanks, lance. I'm at a standstill with the Verapamil right now because it's causing constipation issues, like it will. Ideally I think everyone would like me to explore higher doses, including myself, but my doc says I can't go up at least for a little while. (Of course, opiates will also cause that problem so... I don't know). I also can't take lithium or anything like it because I'm currently on a mood stabilizer and have a psychiatric history. I've been stable for 3 years so I don't necessarily think it would hurt but at the same time is probably not the best idea and in some ways is a less palatable line of treatment for myself than some others because God knows if it will throw me off my rocker. (I was on lithium once when I was much younger and it made me violently ill, to boot.) This also means I have a lot of people to talk to before I even THINK about the ClusterBuster methods.

I know what you mean about two sticks, I always said if my doctor thought holding me upside down by the ankles and shaking me would help I'd let him do it. I also know all of us can sympathize with the need to find relief. Never tried energy drinks, it's a good thought. I've read about the demand valve but I'm a little concerned about sinking too much money into my O2 set-up only because it has given me not the slightest relief thus far. I know it's probably worth a shot, but as we also all know all this treatment is expensive and my current specialist doesn't take my insurance so every penny I save is important. I'll talk to him about the demand valve though and see if he thinks it's a worthwhile investment for higher flow rates, and definitely ask about the energy drinks too.

And, no, I am not giving up any time soon. I have a life to get back to, eventually. I'll keep you all posted on what happens; appointment is in 9 days. Also considering getting another occipital nerve block to see if it helps. I got one last week and it seemed to at least cut down on the severity of my HAs... though definitely didn't do away with them, even for a few days.

EDIT: Also, Lance, I think my question was more about whether anyone had an opinion on if I've done enough so far to consider inquiring about the opiate route. I know there are many, many people who had to suffer years before doing that (and many, many people that those medications will never help) but I just can't wait 10 years worth of more failed meds. I never want my neuro to think I'm begging for them, because I'm not, and I also know that's a very personal question and I obviously can't include my entire medical history... but every opinion I can gather on here matters to me. I know we're all in a much better place with medication and alternative healing than we all were 10, 20, 30 years ago and I'm sure I won't have to wait that long to find relief... but even a day is too long for anyone to have to deal with this. I'm also really hoping to go back to school this fall but I can't in the spot I'm in, so even if we have to do something that's not ideal with the caveat of perhaps changing the line of treatment when I'm home in the winter (I'm lucky; I'm on trimesters and have a 6 week winter break), I just want to be able to function those first 10 weeks at school and keep trekking on.

EDIT #2: Also, I have an appointment with The Cleveland Clinic on August 8th... so, that's great news.

It's been said a lot but bears repeating, attitude is everything. Wishing you peace and some pain free time soon.

Joe

I live in Holland, and i really don't know any of the medicine that are mentioned by you all. I started on oxygen today, but it doesn't seem to do much. I also use Sumatriptan 6mg injections, or Imigran injections.taking about three of them a day.
Does anyone have any experience with that?

Petros, check out the O2 information page on here; it is a very effective abortive for most people when used correctly. You can find it right on the lefthand sidebar when you're on the home page.

As for the sumatriptan, that's the generic name for Immitrex or Sumavel here in the US. That is also very effective for most cluster sufferers. I'm definitely not as knowledgeable on some on either of these things, but you should absolutely read the oxygen information page on here; I found it very helpful even though oxygen is not very effective for me either. You may need to be on a higher flow rate than you are right now.

Definitely give the sumatriptan at least a few goes, too. Like I said, I know most CH suffers find great success with that particular medication.

ALSO, you should never, ever take more than two sumatriptan doses in a 24-hour period. Taking too many will cause rebounds, and taking more than 2 in a 24 hour period is contraindicated by the safety recommendations on triptans.

Quote:

ALSO, you should never, ever take more than two sumatriptan doses in a 24-hour period. Taking too many will cause rebounds, and taking more than 2 in a 24 hour period is contraindicated by the safety recommendations on triptans.

Exactly what I was going to say...unless of course you're using the wonderful trex tip on the left to cut each injection to about 2mg/shot. Blessings. lance

Welcome to the board Petros......you do not mention a preventative medication. As many times a day as you are getting hit, your doctor should consider putting you on a daily prevent medication. Verapamil is the most common first line prevent. We use it at levels higher then most docs are comfortable with, some go as high as 960 mg a day to get relief. Lithium and Topomax are also popular prevents. I use lithium, at 1200 mg a day it'll block 60-70% of my attacks. As Lance mentioned, read the oxygen link:

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It has all but eliminated my use of imitrex. It's cheap, fast, as quick as 6 minutes to completely abort, safe, non addictive, no side effects, not much to dislike about it.

Welcome to the board

Joe

hey zacsz i definatly can understand your frustration with the o2 as i had a similar experience,,but DONT GIVE UP ON IT!!
if money is a issue as it was for me just purchase a o2 welding regulator for around 40 bucks and your flowing practically unlimited flow rates,,worked for me and im glad i listened to everybody telling me not to stop trying,,im aborting at approx 45-60 lpm and it works great,i also purchased the mask from this site which was the best money spent thus far(thanks again ch.com),,
it can work for you i just think you havent tried the right combo yet,

have you tried the combo in batches 123 pf thread?that also helped alot for me

You know the dangers of dependency/addiction having been there as have I, so I'll not tell you no to Opiates.  Anyone else I would.  There are three other things I think I would try first though.  Lithium added to the Verap has worked well for some, although not me.  15LPM O2 didn't work for me either, and I gave up on it several years ago.  I was finally convinced to give it another try at 25lpm and it made all the difference in the world.  I've not tried higher rates yet, but may if I continue having issues.  The third one I would suggest is not in order of effectiveness at all, and that would be Clusterbusters.  It has given many their lives back.  Read the stories there carefully and contact some of the folks and talk with them about it.  The best thing about it is that it is totally non-addictive.  That's something for folks like us who have been that route to think about.

Energy drinks were mentioned, and they can be a big help to me, but won't totally kill a hit.  They will usually knock one down several clicks though if I get to one right away, so they might be something for you to consider.

Jerry

Thanks, Jerry, that's all very helpful. The biggest problems with some of this stuff is the fact I have a psychiatric history (bipolar type II). I did mention in an above post I don't think I can take Lithium for my headaches because a) I'm currently on a mood stabilizer and I'm not sure how they would interact, though I'll certainly mention it to my HA specialist and psych and b) I was on Lithium for my bipolar a few years ago and it made me VIOLENTLY ill. Also due to my psychiatric history, I'm not even really all that sure the Clusterbuster methods are a viable option for me, but I'm also going to at least mention it to my psychiatrist first and see what he has to say. I obviously want to make sure anything I do is as safe as it possibly can be, both physically and emotionally. I've been stable for 3 years and I'm a little concerned adding lithium could do me a lot of harm (and again, made me so, so, SO sick the last time). All that said, most of my psychiatric difficulties were during my teens and they're such a crazy time to begin with. My psychiatrist thinks I'll eventually be able to completely go off my mood stabilizer, so perhaps lithium wouldn't affect me as negatively emotionally as it might have in the past. There's still that worry, though, so I have to weigh and measure. And, not to reiterate it too many times, but that's also with the caveat that I don't get as physically ill as I did last time if it ends up being something everyone thinks I can try again.

I have read a lot about Clusterbusters and watched many videos on it. I'm very interested in it if it turns out it's something I, personally, can pursue safely. I am also going to continue to work on the oxygen and see what I can do to get it to work. Unfortunately, some of my medical history may prohibit me from trying some of the medications that are indeed helpful for many others. It's a hard reality, but it means I have to somehow work around it if I want to feel better and be at a functioning state. The largest comfort in the opiates over some other medications for me, right this second, is the fact that I know they help and should have very little impact on my emotional well being compared to other psychoactive medications (give or take, you know what I mean).

Thanks again to all for the help.

TarHeel-blues wrote on Jul 10^th, 2011 at 12:54pm:

have you tried the combo in batches 123 pf thread?that also helped alot for me

Tarheel, two things: first of all, I'm definitely not totally giving up on the O2. That advice was all very helpful and I'll look into it. The problem is my head is still so completely out of control that as I'm working on the oxygen I really need another change in the regimen, even if it's temporary. I hope with all my heart that I can figure out a way to make the oxygen work, because it's obviously a much better solution than immitrex, other triptans, and certainly opiates.

The quote I included in this post I just don't understand. If you can elaborate than I'll certainly let you if I've tried it!

He did a short hand of Batch's post...under the meds section...."123 pain free days and i think I know why"....it's the link on the vitamin/mineral/inti inflammatory regimen........people are referring to it as the 123 thread! ;)

Joe

I'm sorry, I read your post and totally overlooked your medical history. :-[  No, I don't think either Lithium or Clusterbusters is the answer for you.  Sorry.  I surely didn't mean to rub salt in the wound. 

One other option I forgot all about is to substitute Kudzu for Verap.  I used to use it with better results than Verap gave me and without the side effects.  There are several sources and different providers, but the one I found most useful was Nature's Way 613 mg (certified).  You won't find it at GNC or such, but will have to go to an organic health food store or buy it online.  After trying several I ended up at Swanson's Vitamins because I got the best price, (They will match any competitor), and I got awesome service.  I found I had put an empty bottle back on the shelf and had run out on a Fri.  I called after 4 in the afternoon and the young lady who answered the phone personally went to shipping and got it out on UPS at 4:30 because she knew I needed it.  You can't beat that kind of service!  I don't know if that is a good option for you or not, but it is worth looking into.  There are some extensive threads in the archives that would be worth searching for.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; is one link that also has several links in it. 

Hope this is more helpful than my last post!

Jerry