Been awhile since I've been here. I need to check in more often. Was sad to learn OUCH is no more, and I am guessing with FarceBook, that has slowed down this site alot. Anyway... right to the point.
I see a pain management doctor for my back (which is crumbling at L2, L3 & L4, with L5 & L6 buldging, degenerative back disease, spinal stinosis, etc.) And also for hip pain (they found out my hip is jagged rather than pointed, which has caused all of the leg problems over the years.) That, and I was diagnosed with R.A. back in early 2010 which, is every musicians nightmare - and I just landed a job in a covers band replacing one of the best guitarists in the midwest.
Anyway, I get spinal injection every 2 weeks or more, knee and shoulder injections.
This doc doesn't play around, either. He is in the room, "How's your pain?" "Where does it hurt the most?" and then orders up whatever he thinks will benefit you most, then you wait to go into the 'needle room' until he comes in, does the shots FAST so he can get the next patient in there. In other words - the guy has so many patients, he doesn't play around at all.
(Trust me, I am going somewhere with this...)
I've been out of cycle due to busting methods, and while seeds don't really work for me, the prime method works after 2-3 doses. However, none to be found at the present time... and I started back into cycle a few weeks ago. Mostly hits around this time of the morning, but none the rest of the day. However, if I go to lay down for a lengthy period - I get hit in the evenings - but no daytime hits.
I had an appointment I think it was just over 3 weeks ago, and the pain management doc was standing there and said, "You look pretty worn out."
"Well, not getting much sleep these days due to the clusters coming back.
He looked right at me, "You have cluster headaches right now?" I told him that, I was in cycle again and he did something I did not expect: he sat down.
"I've had cluster headaches since I was 16 years old." He said. Blew my mind!!! I reaffirmed what he just told me, "YOU have clusters? Really?"
"Yes, I would get them so bad that, just over 2 years ago I had to shut down the clinic for what was it... 2 months?" He looked up at the assistant who said, "2 and a half months. We didn't think he was coming back." Then he told me how frustrating it got getting hit at the office in front of patients, having to cancel them for the day until he had to shut his doors since he could no longer operate with the CH's.
"What do you use to combat the CH's with?" He asked. I told him I was on Verapamil and use o2, but that's pretty much it as far as trying to deal with them. Then he said something that blew my mind even further.
"The next time you get hit during office hours, don't abort it. Get down here right away. I have something to try on you I learned in Singapore that got rid of mine, but you HAVE TO BE IN AN ATTACK for me to be able to do this." I freaked out, since he is literally right up the road from me a few miles away!
Well, I kept going in my pattern until this past weekend, it switched up on me and Sunday I started getting hit later in the A.M. - then again in the afternoon. I knew then that, I would be paying him a visit this week.
Wednesday was the big day!
Around noon-ish, I started feeling the pressure that, I knew wasn't just a shadow. Grabbed the o2, jumped in the truck and rushed down to his clinic. Walked in, and at first the nurse had taken me to the other side and was going to give me an injection of some sort. I told her that the Doc SPECIFICALLY SAID for me to see HIM. So, she took me back to his side, and within a couple of minutes they had me in room 5, and he was in there in no time.
He took one look at me and asked, "How severe is it right now?"
"About a level 3 out of 10, but ramping up slow!" He had me sit on a stool and lean my forehead into the bed. He then gave me two shots in the back of the neck & that first one sent the rolling stool out from underneath me, but I kept my head down since, I KNOW the risks. He did the injection and had me lie down.
"I know this is hard, but give this a couple of minutes to work." He told me. Since I couldn't rock or anything, my legs were going back and forth 100 miles a minute. "Feeling any reprieve?"
"No."
"We'll give it one more minute." He asked again, and same thing: pressure is still ramping and my eye is severely watering now. At that, he killed the lights.
"Nurse, go get me a 4 by 4." I had no idea wtf that meant, but laid there for a bit longer. She came in with a syringe, no needle. "Okay, tilt your head back and don't let this go down your throat. If it starts to, spit it in this napkin." He gave me a few squirts down the left nostril, then a couple down the right (as I was getting hit on the left.) "Just let it rest in your nasal cavitiy."
About a minute passed and he asked, "Any reprieve?" I started to say no, but then I felt it starting to fade a bit.
"It feels like it's affecting it." About another minute went by, and all the pressure started subsiding. "How is it now?"
"It's fading out. I think it's going away." I said in disbelief. He then had me sit up and, within 2-3 minutes of him giving me the nose drops, it was down to just a twinge in my temple, which also faded. He then explained what he just did to me
"I wanted to make sure it wasn't such and such nerve that was affecting your clusters, so I initially gave you an Occipital Nerve Block. Since that didn't work, I did a Sheno Palatina (sic?) block that, you can do yourself at home anytime you get hit." I asked him what was in it, and it is a combo of Lidocaine, Epinephrine and something else I can't remember. Now here is the beautiful part.
"You can use this with o2, but probably won't need to since this works pretty fast and the important thing is, not only does this abort the CH, but it breaks the cycle after a few uses to a few weeks of use. I'm writing you a script for this combo, but here are 5 syringes that each have 3 doses for 3 attacks in a day."
I dropped off the script at the downstairs pharmacy, and got a call back a couple of hours later, "Your insurance won't cover this so I called upstairs, and your doc cancelled the script."
"WHAT?"
"He said when you come in next week, he will load you up with as many doses as you need and will keep you stocked up on it."
I am still in awe!!!
I wound up getting hit Wednesday evening, and used the drops on myself. Just like in his office, it worked within a couple of minutes! However, that was Wednesday evening. I haven't been hit since then!
So I am in shock!!! A new treatment that aborts quick, requires no o2 and best of all, builds up after use and BREAKS THE CYCLE!!!
Now we all know the odds of having CH - but what are the odds of finding out your PAIN MANAGEMENT DOC HAS CH? Not to mention, he is right down the street from me? I feel like buying a lottery ticket!
I went to bed early last night just waiting for the beast to bring it on... but woke up of my own volition this morning. So, I am going to find out the correct spelling of what this block is and what else is in it, I will let you guys know. I figure if this will help a chronic who only went episodic bi-proxy of busting methods... this might help quite a few other people.
I've heard so many people mention getting the Occipital Nerve Blocks, but never heard of anyone getting one WHILE IN A CH! Apparently, that is how he ruled out whether it would work or not, and proceeded with this new treatment. You have no idea how in awe I still am at all of this. When I asked him if having clusters made him choose pain management as his specialty he responded, "Of course." and smiled. I guess if I had plans to go to med school and had CH, I would probably pick pain management myself. After all, I'm sure he probably had to put up with his fair share of quacks while he was younger too.
But I will never look at my doc the same way again. Instead, the man has become my personal hero.
Just had to share this with everyone here. I expect my jaw to lift up off of the floor in a couple of weeks.
Peace & Future,
Carl D
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Some Remarkable Things Happening with CH Here... (Read 1818 times)
