Hi Everyone,

To start I want to say Thank you to all of you, I cannot believe I have not found this site before now. Where to start umm how bout recent news, I started a new cycle 7 days ago with the jumpy weather that spring ushers in. At first the shadows started and I thought hey just another bad headache and the white hot railroad spike made contact via a sledgehammer and the dance was on. I have been climbing up the scale and I went to my primary care this morning then and 2 I was reminded what a plus 7 was again. I’m typing this just after finishing a KIP 8.5 (Love the scale by the way) while my lovely wife is at the grocery. I run for the shower when the devil comes HOT HOt Hot water helps me, I cup it in my hand and let hit directly on my left temple, but it doesn’t stop the screaming and pounding of the water (less damage to my hands).

So that the recent news, I’m not looking forward to the next few months that’s my normal duration. But I also suffer from shadows and bad pounders on most days, even when I’m not in a cycle but more on that later. So how bout some ancient news ohh about 8 years ago I introduced to the most amazing, scary, intense, vicious, scary, debilitating, pain I have ever experienced heck heard of. It was 3am in the morning and I woke up and screamed like a baby and tried to claw the spike out of my temple, I instantly ran for the bathtub and put my head under the hottest water I could stand. After 15 or 3000 minutes I’m not sure which. Then I thought well this is how it all ends then the pain just stopped.

This is where the my story gets familiar, I went to my practicing drug pusher (doctor) and the diagnosis train was leaving the station and the script pad started to smoke due to al the writing over the next 3 years. I was diag. with misaligned jaw, tension headache, back out of alignment (LOL), degenerative disk disease (that was real had the surgery got the T Shirt), but it didn’t stop the devil it just made him laugh and re-double his efforts, nerve problems, and then finally I was sent to neurology and the said I had MS !!!!. After I reamed membership services, “Oh did I mention I am a Kaiser victim” anyway I got to see the head or Neurology and she was a angel on earth. I was finally diagnosed with CH and she prescribed Oxygen, what a wonderful night that was the devil started to knock and I ran to the tank cranked it up and 2 minutes later he was gone, finally one for the home team.

Sorry for the novel but I have never had an opportunity to tell someone that actually KNOWS what I’m going through. If I hear ohh how bad can it be it just a headache, or would you like an aspirin, or my favorite I have migraines to have you tried ………… I just want to transfer 10 seconds of a KIP 8+ to there brain and watch them drop to there knees screaming to make it stop, and then say, “How bad can it be it’s just a headache” humph again I’m sorry I would not wish this on my worst enemy but man it’s just so damn frustrating.

Anyway my doctor ran me through the gauntlet of meds I have seen them all here, but the only thing that has even come close to numbing them besides oxygen has been morphine, I take daily doses of 360 mg slow release and for the most part it has worked until 7 days ago. I decided to get off the morph and half way through tapering off is when this attack hit. So now it’s back to the drawing board. But honestly I’m tired I’m sick of fighting it I’m sick of the depression, the lost hope, the, the, the.
So I’m glasd you are all here I look forward to getting to know you and you me. I’m praying this site will help me overcome the devil and his shadows. I want my life back, and be able to enjoy it with my wife and 2 boys.

Thanks for reading,

Inventive_Mind
aka James

[quote]only thing that has even come close to numbing them besides oxygen has been morphine, I take daily doses of 360 mg slow release[/quote


Oh Man...Morphine is  probably causing rebounds by this time.

I want my life back.

Ask your Dr. about getting off of it.  I believe(according to one member here)...that you may need help with detoxing.

I'm glad you are using 02 though.  It is a life-saver for so many of us.

Please read this story from a fellow clusterhead that I've copied and pasted.

[quote][ Dancing With The Devil
Nov 18th, 2008, 1:22pm     Using Opiates Like Morphine to Treat Cluster Headaches

My history with morphine started some 5 years ago when I was forced to reduce my use of imitrex as an abortive for my cluster headaches.  It was becoming less and less effective, and top of that, I was having frequent attacks of chest pains due to angina as a result of a heart attack I suffered in 2001, when they implanted my first coronary artery stent.

My first line of defense up until then had always been O2 and up to seven imitrex injections a day, followed by a trip to the ER and morphine injections when that defense failed to stop the really bad attacks. The oxygen therapy available to me when I was first diagnosed was 7 to 9 liters/minute and although it worked for minor attacks while I was awake, that flow rate was useless when the attacks came at night while I was sleeping. 

Around a year and a half after I was diagnosed with cluster headaches, I was able to get the oxygen prescription changed to 15 liters/minute.  That proved to be slightly more effective during the day, but again, it was not effective in aborting the high Kip-scale night attacks.  On top of that, my cardiologist prescribed nitroglycerine for my angina attacks.  While the nitroglycerine was effective in reducing the chest pains, it was also an obvious trigger for more frequent cluster headache attacks and it made their onset even more rapid than they already were.

I didn’t know what to do so I finally asked my GP if I could try morphine injections at home because I just had to have something to take the edge off the pain of my cluster headache attacks.  I can remember my GP saying, “We have to be careful or we both could be in trouble.”  I felt the morphine injections “worked” as expected, but in reality, they only took the edge off the pain of my cluster headaches to make them more bearable and did nothing to abort the actual cluster headache attacks.  This treatment was neither good nor lasting, but at least I could function.  At that point, the morphine made me honestly feel I had control of my life again.   For the first time in years, I finally had a happy life again with my family, but the stage was set for a perfect storm and my dance with the devil had begun. 

In looking back with 20/20 hindsight and a clear head, I had become dependant on morphine in a matter of months after starting the injections.  Only Bente and my GP knew I was using morphine, but neither of them realized the extent I was using it to get through each day.  I had become a functional addict with a nearly unlimited supply of morphine.  In the beginning I was using one or two 1.5 ml morphine injections a day at 10mg/ml.  By the time I entered detox five years later, I was dosing with four to six 1.5 ml morphine injections a day at a concentration of 40mg/ml.

Shortly after I started the morphine injections, I suffered two more heart attacks in rapid succession over a five-month period.   At that point I was seeing my GP, my cardiologist, and my neurologist of over 20 years, but only my GP was aware of my involvement with morphine.

The sequence of events associated with each heart attack didn’t help.  What is the first that the EMTs give you when they respond to your call saying you’re having heart attack?  Morphine, even before they start checking you.  Then they take you to the ER at the hospital and what do they give you when you arrive in the ER?  Yes, more morphine.  And if they have to treat another higher priority case while you’re lying there, because you were not lucky enough to be first in line, they give you more morphine.

Then, when you wake up in the recovery room, what is the very first they give you?  Yes, more morphine.

And “lucky me”!  As a chronic cluster head, they gave me more morphine, several times a day.  Totally, up to 8 morphine injections a day.  While all this was happening, I still refused to admit even to myself, that I was addicted to morphine.

By the time I had suffered my third heart attack and had the third coronary stent implanted, I had become a master of disguise in hiding the fact that I was using morphine regularly each day from my friends and family.  I had also learned that if I ran out of morphine and the withdrawal symptoms started before I could get a refill, all I had to do was call the hospital and let them know I was having chest pains and the EMTs would deliver the morphine faster that the pizza man could deliver pizza.  At this point, not a day went by without morphine injections and each day revolved around them.  I had become a functional morphine user and was extremely adept at hiding that fact from everyone including myself.

I received excellent treatment at the two hospitals in USA when I was admitted for my fourth heart attack in July of this year, while staying with Pete and Joyce in Virginia following the conference in Dallas. Plaque had built up in the third stent I had been given to the point where arterial plaque was blocking 70% of the blood flow through my right coronary artery.  The before and after video the cardiologist sent me from the cath lab was sobering.  Although that heart attack was very real and very serious, I was still given morphine for my cluster headache attacks.

Throughout this five-year period, my cluster headache attacks continued, usually at a rate of 3 to 5 a day and some times higher.  During the 2007 Clustercompagniet Conference in Trondheim, Chuck made a presentation on the demand valve therapy he was using as a part of the pilot study Pete was running to determine it’s effectiveness.   Chuck’s description of this therapy was so convincing, I prevailed on our local oxygen supplier to loan me a demand valve system.  The demand valve and therapy Pete developed made a tremendous improvement in my ability to abort cluster headache attacks during the day, but some night attacks were still a problem.  Despite my claims to all about using oxygen as my first line of defense for my cluster headache attacks, it was morphine I reached for first when these attacks hit then the oxygen if I used it at all.

By the time Pete arrived in Oslo last September, I needed a morphine injection just to get to the airport to pick him up.  I even had to take a shot to be able to go to the store just to buy a pack of cigarettes.  That’s when it all started to unravel and the wheels began falling off my wagon.  I had run out of morphine the day Pete arrived, but was determined to make the trip to Haugesund without it.  I recall telling Pete the night before we left that I was afraid I had become addicted to morphine, but still clung to the story line that I only used it “as needed” for my cluster headaches.  I know that sounded like a good rationale to me, but it was clear from his comments, Pete wasn’t buying it.

Later that evening around 11 PM, the withdrawal pain had gotten severe and it became clear the trip to Haugesund would be impossible without morphine, so I called the hospital and told them I thought I was having another heart attack.  As usual, the EMTs arrived with the morphine injection and the withdrawal pains started to subside.  I received a second shot in the ambulance on the way to the hospital, and a third at the hospital while waiting for the cardiologist.  As the EKG revealed no sign of a heart attack, they assumed it was only angina and released me early the next morning.  The trip to Haugesund was uneventful, but after two nights staying with Ole Orre and his family in Sauda, I had again started into withdrawal.

By the time we arrived at the symposium site in Haugesund the next day, I realized what was happening and finally admitted to myself that I was no longer in control, the morphine was.  To make matters worse, on top of the withdrawal, I was sure I was having a nervous breakdown.  I begged a dear friend who suffers from migraines for anything that would help, and as it was clear I looked like death warmed over with a bad case of the shakes, she gave me six sobril and a couple valium tablets.  That helped calm my withdrawal symptoms enough so that I could at least perform my duties at the symposium as expected, but the cat was out of the bag, and there were now several people who knew just how badly I had become addicted to morphine. 

I took the opportunity to speak privately with Dr. Monstad about my problem with morphine while in Haugesund, but the combination of sobril and valium had masked my withdrawal symptoms so well, it must have been clear to him, there was no real sense of urgency.

Had I been smart, I would have called the pharmacy and told them to cancel the prescription, but NO – morphine was running what was left of my life. I did relatively well, while my dear friend Pete was with us after returning from Haugesund, but as soon as he left for the airport and his flight home, the very first thing I did was to go to the pharmacy to get even more morphine and started to shoot up again.

The next month was a rollercoaster of emotions marked with short euphoric highs from the morphine and bouts of depression every time I realized what had become of my life all spiced with moments of fear over the thought of going through detox.  I knew I had to do something.  After speaking with several of my closest friends who were aware of my addiction to morphine and who all said it was good that I wanted to go into detox, I scheduled an appointment with my GP in the hopes he would be able to have me admitted for detox. 

To my surprise, my GP passed me off to a pain specialist who I saw a few days later.  He sent me off with a prescription for oxycontin 80mg X 2+ cataflam 50mg X 3 to detox at home, but I had to wait for my disability check to arrive in order to buy the medications.  It seems that our method of social medicine here in Norway that is so good at collecting the tax to keep it running, and it will give you all the morphine you want, but once you become addicted to it, you’ve got to buy the detox medications out of pocket.

When I explained what was happening to Pete, Pål, and Oliver, they all told me in no uncertain terms, that this was NOT the way to detox, it cannot be done at home, and that I needed professional help by people skilled in working with people addicted to opiates through the entire detox process and follow up therapy.  They also called the pain specialist who had sent me home to detox “Dr. Feelgood” and quack, along with a few other names I can’t repeat.  What I didn’t know at the time was that these three were meeting on Skype at least twice a day along with Chuck and Michael to work out a plan of action to have me admitted to a proper detox facility.

They were right.  A few days after starting the detox process at home I was a physical and emotional train wreck in progress…  Somehow Pål managed to get hold of Dr. Monstad who agreed to see me the following day.   When I arrived at Dr. Monstad’s office I must have been a sad sight.  He took one look at me, shook his head in disbelief and said, “Jesus Christ, Svenn you really need help.”  The first thing he did, was write me a prescription for sobril and then he told me to stop taking the oxycontin and cataflam.  He also said he would have me admitted me to a detox facility as soon as a bed became available.  Three days later I was admitted for detox

The 2-week stay at the detox facility was something I would not wish on my worst enemy and I have learned my lessons.  As Pete kept most of you up to date on my status with daily SITREPS, I’ll spare you the details of my stay at the detox facility.  What I can say at this point is my recovery from morphine addiction is still in progress and likely to be so for some time to come.  Although I feel so much better physically, the memory of morphine still lingers.

There are several lessons to be learned from my story, but the most important is simple, opiates like morphine are NOT a medication for cluster headaches.  Obviously, in extreme cases, opiates like morphine, can be administered as a temporary intervention, but only under controlled conditions by competent medical professionals.  The frequency of cluster headache attacks and continued use of opiates as a method of intervention is a recipe for disaster with a very predictable end point.  Once your brain becomes dependant on opiates, words like control, strength, and will power are meaningless.  Your brain will make you do anything to get more.  I have promised myself NEVER again.

Opiates do NOT stop a cluster headache attack.  They only mask or take the edge off the pain. 

Oxygen therapy administered with a demand valve or with a non-rebreather mask at flow rates high enough to support hyperventilation is a very effective abortive if used early, properly, and there are no other medical conditions that interfere with it.  Oxygen therapy is also very safe and it can be used in conjunction with triptans to actually abort the cluster headache attack and stop the pain.

By telling my story I really hope you understand that opiates like morphine are not the medication for us, and not something you should play with.

Svenn



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/quote]

Hi Again,

Thank you for your responses and concerns over morphine, I must admit I got my feelings hurt. I was hoping to find help with my CH’s not a lecture on the evils of morphine even though I stated I was tapering off it. Believe me when I say I am aware of the effects of morphine I have been taking it for over 4 years due to chronic pain. No not the CH’s I have had surgery for Bi Lateral Throrastic Outlet Syndrome decompression and 4 plus years ago for degenerative disk disease.
I am also in recovery for drugs and alcohol I have been clean and sober for over 7 years with exception of the morphine. I work very closely with my doctors and support group to make sure I do not misuse it. My doctors have been informed of all of my conditions and my support group is involved with my medical decisions. The reason for this is I have found that most doctors do not have my best interests at heart and like things to fit into neat categories. And I can fall into old behaviors very quickly so I do not go it alone.

So I want to try this again, and I hope this clears some things up. I have been dancing with the beast for over 8 years now and I get major attacks about twice a year. I have shadows some bad KIP 6 most midrange and some mild everyday, I cannot remember a day without them since the CH’s started. As I mentioned I am in recovery and take it very seriously, god and recovery has given me back my life a wonderful wife and 2 sons. And now the beast is trying to take it away again. My wife has seen the beast attack but this last series has been a new level. I have also been able to keep the beast at bay until my boys were out of site until last week, and that has prompted the new search for information.

I would love to hear about the progression of this disease, does it get worse with age for everyone? If yes please tell me your experiences.

Does the amount of time you feel it coming on to a full attack go down? Let me explain, usually I have 3 to 5 minutes before the pin prick becomes the railroad spike and I can get alone pull over etc. Last week I was getting my son ready for bed and I got dropped, there was no warning full attack and I hit the floor screaming. My son just stood there until my wife showed up. I need to share this; my son got right by my head and was digging at the carpet, when my wife asked what are you doing he said, “I’m digging to find something to help daddy with his headache” man he makes my heart feel. So do your CH’s change or mutate after time?

Oxygen question, does it always work for you, I know if I get it early on it will usually stop it but if I wait until the drums start beating it’s to late and I’m in for the entire song. Again last week I made it to the oxygen but the beast just kept coming it didn’t slow him down no matter where I set the regulator, so is this normal?

Another thing that changed with this round, I was doing my normal hot water shower and 10 minutes into it I could barely breath the pain went to the point of over-riding my system and I had to consciously tell myself to breath, then the water in the shower was like needles on my skin. Hot water has been my one sanctuary in all of this and I had to get out, I was emotionally devastated like losing my blankie   but really it seems my CH’s are changing and that has me really concerned, has this happened to you?

Does the weather effect your CH attacks? The big area I disagree with the Neurologist is the weather, I can tell by watching the weather report if I’m going to get a bad headache. During an attack period I can tell when an attack is emanate. When a storm rolls in (Pressure Drop) and when it rolls out the period right after a storm and the new weather pattern sets up (Pressure rise). My Neurologist says there is not any documented proof that weather affects medical conditions, even CH’s, my wife jokes it’s my pain barometer, has anyone else noticed this?

A bit on meds I have tried a lot of medication to prevent CH’s and have had no luck, like I said in the previous post the only thing that dulled it was the morphine and I only found that out because I was on it for the surgeries. I have listed out what I have tried and would love to hear your input. I no longer do illegal’s so please don’t go there, and as for the morphine I am currently tapering off to see where my body is and hopefully find another solution for the chronic pain.

Have Tried:
Venlafaxine
Gabapentin
Naproxen
Topamax
Bupropion
Lithium
Imitrex pills, and self injections (cleared for up to 10 shots a day)
Migranial
I cannot remember the names of the first ones they gave me
Pain Relievers – oxycodon, oxycotin, short and long release morphine, methadone

Currently use:
Morphine (Dual Purpose), Oxygen, Hot Water

Experimenting with:
Red Bull, Ice packs again and Testosterone (Self Injections)

Side Effects:
Morphine – Memory loss, constipation, Sleep Walking (Gets real bad with anti depressants), rebound headaches
Oxygen – Convincing Kaiser to stop discontinuing it (I keep a full welding tank and mask handy)
Hot Water – Skin gets all wavy  
Testosterone – Swelling of ankles and fingers other areas swell more often now but thats a good thing   just ask my wife.

Illegal’s I have tried:
Weed, Cocaine, Alcohol (Drunken stupors), Meth

Thank you for reading through my 2nd novel and again I’m looking forward to getting to know you all, hopefully between god, the doctors, and this group; together we can find a way to kill the beast.

Inventive Mind

p.s. If there is someone who is suffering from addiction as well as CH I am willing to talk, or write or help in anyway I can, I know the desperation of addiction and maybe I can help.

Welcome to the board, and I'll second the motion on 02, been a miracle worker for me too.

As to the progression, I started CH at 18. Wasn't properly diagnosed until my early 20's, I'm 49 now. The cycles in my late teens were sporadic as best I can remember. Through the 20's to early 40's, they were set to the atomic clock! 2 cycles a year, spring and fall, 8-12 weeks long 2 hits a day. And NEVER a night time wake up hit.

My mid to late 40's the beast went all over the board. skipping cycle for 18 months followed by an 8 month cycle. learned the joys of the night time wake up hits.

I'm 49 and they haven't "gone away" yet. For some they do, predicting the progression is next to impossible based on the experiences here on the board.

Welcome to the board, you're among friends who know exactly what you're going through and will do anything to help you!

joe

Welcome,

           Yep, Clusters suck.

                                              Coach Bill.

Thanks Ginger,

As I Have heard many say "It's nice to know there are others that know exactly how I feel" it may be misery loves company but the Beast goes so far beyond misery into the area Coach Bill so eloquently puts, "Clusters Suck" and I need to add "Amen Brother"  

I do hope the battle get s easier, because this round has been brutal so far and I have had more support these last couple of weeks than in all of the past years.

~James

Jay, do read the new oxygen info link on the left. People who oxygen didn't work at all for, or who had minimal success with it, are achieving significantly shorter abort time when they change HOW they use the 02. Hoping it proved the silver bullet for you it has for me. (6-8 minute abort times!)

Joe