I thought the appt was going to be a bust when he started off kinda critical about what type of pain I was having and then pointed out how CH usually hits women not men...and then that it's even rarer for people to have migraines on top of CH.  Anway once I explained where the pain was and he started his tests the beast decided to hit...so he got to see first hand what I was telling him.  It's wasn't a bad one only about level 6, but enough that he could see my eye almost close and joke about me needing the pirates patch.

We are not trying O2 at this point since he did see I had tried it in the past and it didn't work.  And he saw my insurance and figured right now I wasn't up to the fight I would have to do with the insurance company.  Instead I'm trying a beta blocker, another steroid (much stronger), a seritonin medication at night, and morphine for pain.  I go back in two weeks, if no relief then we'll try a new combo to see what works.  What scarred me a little was his talk about the possibility of surgery and implants to stop the pain......I'm hoping this combo works.

I've never been a big pill person (used to get in trouble for not taking the 1 med I had to take daily--add to that a family member who became an addict), and now I'm on so many different meds.  I'm a little concerned about what all of them are doing to my body.  My BP is already really low 95/60 usually and now I'm taking a high blood pressure med...he assured me it's a low dose so I wont' have problems, but I've blacked out when mine has dipped too low before.....sorry for the rambling, and thanks for letting me do so.  I'm just worried this year, the beast has changed so drastically this year and I haven't had the migraines added into the mix before.  I haven't been this scared of the beast since I had my first hit 12 years ago.

i'm with you!!! completely scared this time around everything is different new job and a 2 year old daughter and to top everything off i have no health insurance so i'm doing this alone no meds no doctor visits. i'm trying to stay positive hopefully this will benifit me in the future but who knows.....good luck to you

A couple of HUGE red flags.......

1: Morphine for the pain. No doctor in the world, with ANY knowledge of CH would prescribe morphine.

2: The only women and the no CH Migrain combo...as you read you'll see that happens to a lot of people.

The steroids work well for most...while you are on them....but long term useage can wreak havoc with your body. Wishing you luck but honestly I'm very concerned about this doctors total lack of knowledge on CH.

Joe

i completely agree with you joe the doc seems to know nothing

I dont' knwo, he is the first I've seen so far, at this point I got more info from him up front than I have from any doctor so far.  I understand what you are saying about the morphine but to be honest tonight is the first night in what seems like forever that I have very little pain.  So far no pain meds work for me, and O2 did not work the last time they tried.  The doctors have tried about 6 other types of pain meds, I've tried Imitrex and Midrin with no relief.  I don't want to get hooked, and am good about only taking meds when I need them...but I'm just grateful to get a little relief, whether it's just a break from CH or the meds I don't care right now, I'm just hoping it stays gone.

The steroids I have been on in the past were a very low dose and did nothing for me.  This is a higher does that I take for about a week to try and break the cycle.  Again I dont' know, this is the first time I've seen a neuro for the headaches.  I never needed to before, I only had mild (what seems mild now) pain a couple times a year and it was gone.  I just lived with it...but I can't this year.  I try to keep my head up and do the things I did before, but I'm not succeeding.  I go out with friends and have to leave early to run home before it hits, or go sit in the car as it hits...or I go to a friends house and end up inside rocking back and forth hoping they won't come in and see me.  At work I dread when I feel my eye start to droop, everyone is going to know I've got it coming on.  I can't hide this from others, it attracts so much attention that I don't want.  I'm trying to learn to live with the pain, but between the migraines and the CH, it's constant pain.

Sorry, just kinda down tonight, and drug out from a bad CH/migraine weekend....and getting slammed again this afternoon.

Never apologize to us for being down.......we all been there and it sucks. :'( Have you read the oxygen link on the left? Many have found that changing HOW they used 02 drastically changed the effectiveness of it.

Joe

I did reasearch today about morphine and clusters since I had never heard that it wasn't good for them but I couldn't find anything as to why....can someone tell me why?  :-?

A couple reasons why I ask.  My doctor's scratch their heads and laugh (joke) with me about how meds don't work like they are supposed to for me...small example a sleep med gives me insomnia.  Anyway, I took the morphine when I got home from the pharmacy.  At the pharmacy I got hit with about level 7-8, and was hit at the neuros earlier with 5-6.  The morphine did take the pain away and only left me with a mild burning feeling.  I took it when I got to work (no driving with it until I know how I'm gonna react to it) and all I had were a few minor shadows....LIFE WAS GREAT TODAY  ;D.  I guess I'm much more obvious to people I work with than I thought I was when I'm hitting, since I had several people I don't talk to every day make comments on how much better I looked today.  It wore off at 4:30 or around there, and I knew exactly about the time it was wearing off...the migraine started to return and I could feel the shadows increasing and mild pain starting.  I couldn't take it until I got home at 5:30 and am now it's just staring  to kick in and level off/take away the pain again.  I know everyone is different in what works and what doesn't I was just wondering why it's such a no-no if it appears to be working for me when NOTHING else has worked so far?

Hi jesbri -

here is something to read from a member here who went thru using morphine for CH...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

My sister went through something similar using it for pain when she was hit by a car and her back was shattered.  Bad drug - highly addictive - and getting thru an addiction like that is NOT something to play with!!  
When using for multiple hits per day, relying on it to get you thru weeks of CH pain, I'm sure it can't be a good thing.  I've never tried.  Hate meds to begin with.
I did read that you generally have three week cycles and that this is the worst that you have had - longest, etc - the same is true for me.  I'm finding different things that help a little - Find a Headache Specialist!!!  I found a Neurologist Simply didn't do it!!!  They generally don't know enough about the beast.  I found the two neurologists I fired had little training on various specialty HAs, and little experience treating them.
I would also say give O2 another try to abort those hits - you said it didn't work - did you have a high enough flow? Right mask?
I always avoid narcotics if I can help it, even with the extreme pain that I have gone through with CH.  They are Not a good thing to get used to leaning on - these headaches are not something to get used to relying on heavy pain meds... my opinion.   ;)

Hang in there Lady!!   8-)  But DO read the story I linked above!

Val

Val beat me to it with his link to Svenn's story.  

Narcs are a NO-NO in my book for CH.  I never used morphine, but early on with mine, over 25 yrs ago, I was put on percocet, percodan, feurinol (sp?), and a couple of others to try to handle the pain.  ALL they did was to mask it a bit.  I still hurt, but didn't care.  I also got dependent.  I don't believe I was fully addicted, but it was CLOSE!  I got to where at the first sign of discomfort of any kind, not just CH I was reaching for the pills.  That is not a way to live!  i was just existing.  It took a couple of years before I quit craving the meds whenever I got hit with anything.

For quite some time now I have been med free.  It is not always (ie never) easy, but I have learned to handle it for the most part.  I know it will end, and through learning to focus my attention (LaMaze childbirth education  ;D) and dealing with it I can usually keep it under an 8.  I do hit it with coffee and/or an energy drink to knock back the worst ones.  Perhaps being chronic has helped me become accustomed and be able to deal with it better.

Charlie has a method that worked for him, and I've heard some others say it helped.  I could never do it myself, but he wuold be happy to share it with you.  I don't have a link right to hand at the moment, and I'm not up to looking right now.

Definitely check out the O2 again.  It may or may not work for you, but it has no side effects or addictive properties to worry about.  PM Chuck or Batch if you have questions.  I know Chuck will give you his phone number and talk you through it if you need it.  He has for others.

Since you have BP probs you don't want to do the Verap route at a high enough dosage to help.  I found Kudzu to work pretty well for me, and without the side effects Verap and Lithium gave me.

Finally, you need to fire your Dr and get one who specializes in headaches.  You have multiple issues, and you need someone who has more practice practicing with HA's.  IMHO  YMMV

Sorry this is so long, but you had a lot to cover.

Jerry

One of the reasons NOT to use narcs is THEY CAN CAUSE REBOUND headaches. And the rebounds are WORSE than the original (that's in addition to getting addicted).

I have migraines AND CH and it's not a fun place to be (and I'm chronic to boot). Most of the time I don't have BOTH at the same time, but it's happened...

O2 (at 8 liters) worked "somewhat" in the past for me (but I had to take cafergot along with it - I think the O2 just gave me something to do while the cafergot kicked in) BUT last year at the OUCH convention I got introduced to a demand valve and HIGH FLOW O2 and it's made all the difference in the world. NOW, I use O2 almost exclusively to abort a CH - Since going that route, I've only taken cafergot maybe a couple of times, so there's been some BIG changes in O2 treatment since you tried it last. It's WORTH another try.

Red Bull (or an energy drink with caffeine and at least 1000 mg of Tarurine) at the first sign of a CH will sometimes abort a hit (works for a lot of us).

Melatonin at night before bed (15-18mg) will (for a lot of us) stop the night hits.

My suggestion is that you read and print out what's available on this site and take it to your doc. DEMAND O2 (it's definitely worth a shot). If he writes the script RIGHT you shouldn't have any trouble with the insurance company. Be sure you get a NON-REBREATHER mask and a regulator with at LEAST a 15 liter flow (25 liter is better).

But any neuro who gives narcs for the pain of CH doesn't know his/her headaches very well. Even Excederin (and 3 of those will stop the pain for me at times) will cause rebounds if used too frequently. We have to be careful what we take or we compound our problems.

Wishing you a short cycle.

Hugs BD :-*

I read the link a bout the addiction and this is a concern of mine.  I have a sister who is an addict so it is something that I am very worried/knowledgeable about.  The ony benefit for me is this knowledge and knwoing the way I deal with medications.  My GP has tried to give me stuff for pain and I have told him unless I hit an 8 I can handle the pain as long as I can get a good night sleep.  Usually mine don't wake me up until early morning and I can usually get back to sleep.

I think the only reason he gave me anything, is I listed off everything I have tried so far that has not worked.  This is the only thing I have not tried for the headaches...so he wanted to try it.  I only have enough meds to cover until I go back in two weeks, that is all he is willing to give me...a short dose to see if the BP med, seritonin med, and steroid will stop the current cycle.  I take the morphine twice a day once when I get to work and once when I get home.  I don't want to be an addict and I have a great support system who monitors me all the time---partner who works in a hospital and watches me like a hawk/mother hen...LOL.

He did tell me O2 is the best treatment, but he has worked with my insurance company, who I have already had to fight with for other medications and knows what type of fight I would have on my hands.  We may go that route, if it will work for me this time, but he knows that the pain I have had this past really bad weekend, and knows I was not up to the fight...........not just the headaches, a lot of other crap happening now too the just build up the stress level too.

I've tried the energy drink route, and found it to be a great abortive if all I have is shadows, but all it does is postpone the enevitable for me and when he strikes I get slammed hard.  I can hold it off for the day as long as I continue to drink it all day, but come night time or the next night I get hit at a 9-10...it's almost not worth it, I'd rather have the 4-5 for a 1/2 hour a couple times a day than stop the attack and get hit so hard.

To be honest I want to try to find a holistic way to deal with this.  Some meditation has helped me, the rocking or motion helps when I get hit and my family knows if I'm sitting down rocking away to leave me alone for a while.  I just want one week or at least a few days of PF, to remember what life can be like w/o both types of headaches.  

Jes:  It took 4 years for me to get the correct diagnosis and in those 4 years every doc I saw tried me on different pain meds.  Pain meds don't touch these headaches!  All they do is CHANGE them.  I went from having 2-3 a week to 2-3 a day because of pain meds.  After 4 years, when I started taking the preventatives, it got even worse - I was on Verapamil and already have low blood pressure.  I started having bizarre heartbeats and even longer headaches.  The oxygen has no side effects and used correctly it gets rid of mine within 5 minutes - my insurance also refuses to pay for it but it's worth it to me to relieve the pain so I pay for it without any complaint - I'm just happy that it exists!  By the way, I was also on the Melatonin which is supposed to help you sleep and ended up at the hospital for the first time.  It's not just you - but most medications work backwards on a lot of us.  Also my first neuro did not know much about clusters - he knew to prescribe oxygen but not how to use it.  He knew to prescribe Verapamil but not how to test you first and during increases.  Get to someone who really knows about these monsters!

It's been awhile since I posted my little technique. Sorry I haven't kept up. Here goes kids and I hope you all give it a try. It works for some.

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck

Charlie      

Thanks Charlie, I will try it the next attack I have, anything is better than being on a bunch of drugs...but at this point I've had a pretty good week with the drugs, but I can tell when they wear off.  Everyone in my life, including people who don't see me that often have commented on how much better I look this week and how nice it is to see the real me again.  I know it's short lived since it's the pain meds doing it, but I've gotta say it's been nice to have a break for a little bit.

Around here, pain free time is always a cause for celebration! Hoping it lasts a while for you! [smiley=shore.gif]  (the happy dance!)

Joe