Michael's Search for Pain Relief

Background:
"My name is Michael and I am 34 years old. I live in southern Indiana. I’ve had cluster headaches since I was 19. I was episodic for the first 12 years with ONLY right-sided headaches and average cycles lasting 6 – 9 weeks. Even then, nothing helped until the production of Imitrex injections. It was a struggle, but that time seems so easy compared to now. I am now chronic and have been for almost 4 years.

Since becoming chronic, my headaches have switched sides (I now have 90% of them on the left side, but can still have an attack on the right at anytime. They have never switched sides during an attack.) I have relentlessly pursued medications, procedures, doctors and neurologists that might be able to help even a bit. I’ve been a patient of the Michigan Head Pain & Neurological Institute for over a year now with no results. I’ve also been an impatient at MHNI 3 times. I owe my life to Imitrex injections and my local neurologists who supply me with the injections, Dr. J. Seipel. Without them I wouldn’t be here today. I use between 3 and 9 injections everyday with the average being around 6. I’ve been doing this for years.

My procedures:

The first procedure that I had was the sphenopalatine nerve block.

It was the most frightening thing I’ve ever had done but still a minimally invasive procedure. I had it done at a local 'Pain Management Center.' I was told to enter a small room and lie down while medicated ‘gel’ was placed into my nostrils for 10 – 15 minutes. This was supposed to desensitize some of the nerves involved with facial pain.

What I didn’t know was that the ‘gel’ would be inserted to the brain stem (or very close) using long sticks. It felt like some kind of ancient torture method and I thought I’d never make it out alive. (I was totally conscious and drug free during this procedure). The procedure was supposed to be done 3 times for the maximum effect but I could only stand to do it twice. It made my headaches worse in frequency and intensity. I was in the hospital getting DHE IV infusions soon after the second treatment. I’ll never try that procedure again.

The second procedure that I had was the occipital nerve block.
I’ve had it done 5 times bi-laterally with only the first one giving me 17 days pain free time. All the rest failed. This procedure was not very painful and only took a matter of a couple of minutes. Two needles are inserted into the back of your neck (base of the skull) on either side and you are injected with a mixture of medications (including steroids). There is no need for any sedation for this procedure. Too bad this one didn’t work more.

The third procedure I had done was 'radio-frequency generator.'

I had this done at MHNI and it was like having an operation. You are sedated in an operating room while 2 needles are x-ray guided into the targeted nerves. In my case, they targeted the occipitals. It basically 'microwaves’ or heats up these nerves in hopes of temporarily disabling them I looked like I had been bit by a vampire and I was a little sore for a couple of days after this procedure. I’ve heard others (patients from MHNI) say it was extremely painful but beneficial. This option failed for me too as my headaches returned relentlessly within hours.

My fourth procedure I had done was the 'facet nerve block.'
I also had this done at MHNI. This procedure was very much like the RFG procedure. Instead of using the “microwaves”, medications were administered. This option is also considered minimally invasive. It also failed immediately.

My last procedure was a ‘trial’ implant of a 'bi-lateral occipital nerve stimulator.'
This was first considered because of the fact the very first occipital nerve block helped. I was the first and I still believe to be the only person in the USA that has had this done. I had it done in March of 2004 at MHNI. Even though this is considered a minimally invasive procedure, it was still quite painful and uncomfortable for several days after. I met with many doctors at the hospital along with representatives from Medtronics (the makers of the neurostimulator). I was sedated most of the afternoon. I woke up to find that the back of my head had been shaved and there were two wires sticking out of both sides of the base of my skull. I could hardly move my head at all. The wires were taped to my back and lead down to a pocket sized electrical intensity control box. I also was required to wear a soft collar.

I was instructed to keep the electricity flowing as strong as I could handle it for several days to see if it could prevent any of my headaches, which it didn’t. I was then instructed to ‘crank it up’ at the onset of an attack to see if it would prevent any headaches, which it didn’t. The electricity was felt from the back of my head all the way to my forehead (including in my ears). The doctors who did this said the procedure went perfect and they couldn’t have asked for better lead placement. That’s too bad because the only thing I got out of it was pain, discomfort, and a pretty constant shock. I still believe it was worth the try though.

My local neurologist and MHNI have ‘teamed up’ to try and help me. They constantly consult about what to try next. I’ve done ALL the usual medications and many that are ‘off the wall’ (like Cell Cept and Clomid to name a couple). I think they really don’t know what to do for me.

Dr. Rozen from MHNI and Dr. Saper (the founder of MHNI) have agreed that I may possibly be the first person in the USA to have the deep brain stimulation procedure.

As of right now, it is not available in the states (for cluster headache). Both doctors know the doctors that taught others in other countries on how to do this and have mentioned me as a first candidate. As soon as they get governmental approval, I’m ready to try it as I don’t see how things could be much worse.

I’ve also sent an e-mail to Dr. John Halpern and Dr. Andrew Sewell at Harvard Medical School, McLean Hospital, Belmont, MA. They are about to conduct experiments using Psilocybin and LSD in the treatment and prevention of cluster headaches beginning in October of 2004. I’ve never tried either of these drugs but I will if they’ll give me the opportunity.

My whole life has completely changed. Everything revolves around the headaches and keeping in stock of Imitrex injections (which is hard to do). I hope to soon find that ‘magical cure’ … but so far, it’s nowhere in sight. I would give up everything I own to stop or even help these headaches. Please wish me luck … I need a break!"

Last modified: 2004

April 2006 Update

"After years of seeing doctors, taking numerous medications, and having several procedures to no avail, I finally found something that has helped me tremendously: IV Histamine Infusions. It doesn't work 100% of the time, but it has brought me months of pain relief and I would strongly recommend it to any chronic 'clusterhead' that has 'tried everything' else. I originally started doing it at the Diamond Headache Clinc, but I now do it at a local hospital.

Life is much better!!"

Last modified: 2006