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Topic: So I went to the MHNI yesterday (Read 1138 times) |
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3-foot
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So I went to the MHNI yesterday
« on: Apr 5th, 2007, 1:39pm » |
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The Michigan Head Pain and Nueurological Institute.
I ended up spending 6 hours there. They were very through. In the end they agreed with me that I had a classic case of cluster headache. Although I don't fit the profile of a smoker, child of a smoker, or former head trauma patient. I guess 99% if CH'ers fit into one of those 3 catagories. HUH.
Anyway in the end I got a shot of 9mg of Litocaine and 1 mg of Kenalog(steroid) right into the base of my skull. I assume it was probably directly into the nerve. This is supposed to stop the episode I am 3 weeks into.
I went home with a prescription for oxygen & Imitrex injections for abortives and if necessary Verapamil as a preventive. Also a recommendation to take Melatonin in 9mg doses also as a preventive.
The injection was supposed to be effective within 24 hours. I was pain free all night until 6 am this morning. I got what seemed like a minor hit, that was escalating more slowly than normal. Still it was getting bad, I was still well inside the 24 hour mark. Since I haven't filled the O2 yet I decided to try the Imitrex, my only option.
I hadn't read the directions yet (my bad) but it seemed straight forward. Still trying to read during a hit is difficult, thanks to the photos, I managed to get it going but I didn't hold it down long enough and lost probably half the dose dribbling down my leg. Still 30 seconds after the injection, BAM! I felt it coming up my back like a warm tingling wave, straight up my spine and the back of my head. Then the cold sweat hit, for about 3 minutes I thought I was going to pass out or die. I guess I got enough in there after all.
5 minutes later it was gone!
I clearly was not prepared for the sensation that the Imitrex gave me but the end result was great.
I ordered the O2 today. This is really the direction I want to head with the abortive. I don't like putting drugs in my body, but I had to make a choice between that or pain, I'm sure you all can relate.
It was nice to go to a doctor who actually knew what he was dealing with and had real experience fighting it with great sucess. I guess I count myself lucky that it's only an hour drive for me.
I can now relate to these Blind melon lyrics....
"Needle, fetal
Someone's pouring warm gravy all over me
And you see that synthetic therapy
Don't you know it seems to be so unappealing
But, oh what a feeling"
Ok, I know he had a drug problem, that killed him, but the song stuck in my head today. The feeling was similar but not the same, I imagine.
Since this morning I'm pain free and hoping it stays that way as I'm past the 24 hour mark now. (finger crossed)
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BrianJ
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Re: So I went to the MHNI yesterday
« Reply #1 on: Apr 5th, 2007, 1:57pm » |
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all sounds like good news and you getting the help you need all i can say is it feels good when that first shot of imagran (imetrex) takes that HA away dont it i find a little sleep after the HA has gone makes ya feel great
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seasonalboomer
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Re: So I went to the MHNI yesterday
« Reply #2 on: Apr 5th, 2007, 1:58pm » |
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Welcome to you 3-foot! Sorry you had to find us but glad you found a place.
Sounds like they've got you pretty well set. Important point on the O2 -- you must have a regulator that allows you a flow rate of 10-15 liters per minute. If the O2 company tries to leave one that only goes to 8 lpm -- stop them and have them give you what you need. Also, very important, you need to have NON-rebreather mask -- these have a bag on the bottom and don't allow outside air to intermingle. And if they try to give you nosa cannula's tell them to give you what you need.
As for the Imitrex. I'm averse to using drugs too - but damn, that stuff really works doesn't it? I've gotten over my drug aversion when in cycle, and if the O2 doesn't work (which it doesn't occasionally) -- I'm sticking myself with an Imitrex and going on with my life and quickly forgetting clean living for a little while.
Good luck.
Scott
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Kevin_M
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Re: So I went to the MHNI yesterday
« Reply #3 on: Apr 5th, 2007, 1:58pm » |
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My first time with Imitrex was a flushed sensation but thereafter that was not a factor much. There is a good Imitrex tip over to the left side for using much less with good results, too.
Quote:| I don't fit the profile of a smoker, child of a smoker, or former head trauma patient. I guess 99% if CH'ers fit into one of those 3 catagories. |
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Not so familiar with that.
Quote:| I went home with a prescription for oxygen & Imitrex injections for abortives and if necessary Verapamil as a preventive. |
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I find the verap necessary myself, better than aborting random hits three times a night, at work, etc., etc.
Good luck!
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| « Last Edit: Apr 5th, 2007, 2:09pm by Kevin_M » |
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chrisw
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Re: So I went to the MHNI yesterday
« Reply #4 on: Apr 5th, 2007, 3:38pm » |
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try the verapimil, it is a wonder drug for many with few side effects. Its always better to prevent hits, than treat them.
Also, you should really look at the imitrex tip on the side, most of the bad initial side effects do not occur when using this method. The only thing is, you may need to get your dose ready during a pain free time, because trying to pull off the label, and pry it out of the case is very hard to do during a bad hit.
Good Luck with your treatment and hopefully you can find a great preventative for you. If not, there are sooo many great people here, that you can get support from.
chrisw
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E-Double
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Re: So I went to the MHNI yesterday
« Reply #5 on: Apr 5th, 2007, 4:33pm » |
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Glad you received approipriate care!!!!!
MHNI is top notch.
Get that O2 ASAP!!!!
Another Blind Melaon Fan...check out my tag!
Feel good and good luck!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Guiseppi
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Re: So I went to the MHNI yesterday
« Reply #6 on: Apr 5th, 2007, 5:08pm » |
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I describe the imitrex more as the "snakes up my back" feeling! It's wild how fast it aborts though. Great advice above on the oxygen. People have used it incorrectly, nose cannulas, rebreather masks, low flow rates, and assumed it wouldn't work for them because it didn't abort their headache. The only two tricks are starting it as soon as you get the "oh sh$@ here it comes" feeling, and making sure you breathe 100% oxygen. Will abort the vast majority in 6 minutes or less for me! Hope it does as well for you, and welocme to the nut house!
Guiseppi
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3-foot
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Re: So I went to the MHNI yesterday
« Reply #7 on: Apr 6th, 2007, 7:48am » |
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Thanks for the welcome guys(and gals),
My O2 is coming today between 12-3. It seems they didn't have a regulator that flowed 10-15 in stock. Its written righ on the script: non-rebreather, 10-15 lpm full mask. They really cover all the bases at MHNI.
I had another hit last night at about 7:30, my usual time. It seemed a bit slow to start and didn't peak all that high. Maybe that block helped, although it didn't "block" exactly. Relaxing seems to be my trigger, can I get some stress over here please? 
Anyway I injected the Imitrex in my /(forest gump voice)"buttocks"/fgv this time and it was much better. Last time it was my leg and must not have enough fat in it, thus causing it to hit my blood stream too fast. That's my theory anyway. Much better this time and with a full dose too. I read the imitrex tip but, yikes, I really hate needles. It's all I can do to hold that thing against my ass for 5 seconds. 
I'll be Shopping for melatonin at the health food store today.
I notice that I've been dreaming a lot the last two nights. Is that a side effect of the drugs or am I just sleeping better now? Hmm... I hear the melatonin makes it even better. Nice, dreaming has always been interesting to me. If I can just learn to take control of my dreams....
So many Melon lyrics that seem to fit, it makes me wonder about that guy. How about this...
And now I'll close my eyes really, really tight
And make you all go away,
I'll make you all go all go
away......
And I'll pull the trigger
and make it all go away
And I'll make it all go away,
I'll make it all go away
......that guy had problems.
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pieface_49
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Re: So I went to the MHNI yesterday
« Reply #8 on: Apr 6th, 2007, 11:09am » |
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Hello 3-foot,
Your discussion of dreams hits with me. Normally, I do not have dreams or just don't remember them. Very seldom, only when under high stress do I remember dreams. Nightmares have been with me since childhood. Usually occurring during times of stress. During my last cycle, dreams were very prevalent and stuck in my mind after awakening. Highly unusual for me.
http://jrscience.wcp.muohio.edu/nsfall01/FinalArticles/FinalDraft.Factor sThatInf.html
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When God was passing out stinkers, I thought He said thinkers. I now have a better stinker than a thinker.
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Guiseppi
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Re: So I went to the MHNI yesterday
« Reply #9 on: Apr 6th, 2007, 11:17am » |
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Out of cycle I'm lucky if I remember what I was dreaming as soon as I wake up. In cycle I remember multiple dreams with very vivid details. I don't know if it's CH related or med related.
Guiseppi
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3-foot
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Re: So I went to the MHNI yesterday
« Reply #10 on: Apr 7th, 2007, 8:27am » |
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I'll have to mention the dreaming at my follow up next week, sounds like a common thing. I keep dreaming about people from high school, I hate that.
I'm gonna keep rambling on in hopes that someone might learn something from my steps and mis-steps.
The O2 was effective for me 2x yesterday at 8pm and 10 pm I was getting little twinges and hit the O2 right away. It worked! Why does is smell so bad? kinda sweet. The mask is missing one of the shut off disks, so I had to tape over the hole and now it exhales through one side and the bag, but it's air tight. All hail the power of duct tape!
Then at 12:18am I awoke to one already in progress. I tried the O2 a third time, after 15 min, it knocked it down maybe from a 7 to a 6, but it was too late to stop the train. An Imitrex injection finished the job in about 5 minutes. Then back to sleep, no more issues.
So I reduced my injections by half, yesterday with oxygen.
I'm starting the Melatonin today, but I was told it will take several days to really have an effect. So I may have a few more injections in my future. They gave me 10 doses so it shouldn't be a problem, except that I feel like I'm poisoning myself every time I push that button. Still it is better than the alternative.
Also saw the Chiropractor yesterday; he thinks he may be able to help as well. It can't hurt to try, every avenue.
It has been 4 weeks today since the cycle started. My episodes usually have lasted 6 to 8 weeks, so, with luck, I'm on the down side of the hill now.
Oh, one more thing... Have you noticed your sense of smell has gotten better, than it was? Mine is very accute this week, and that is not normal for me. I wonder if this is related somehow. Hmm...
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| « Last Edit: Apr 7th, 2007, 8:31am by 3-foot » |
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Rockcoat
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Re: So I went to the MHNI yesterday
« Reply #11 on: Apr 7th, 2007, 8:57am » |
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Back when I was first diagnosed (1985) my neuro prescribed a drug that he warned me may cause vivid nightmares. I think it was either Inderal or Ergostat? (Perhaps an early version of Cafergot?) I wish I could remember because they indeed caused incredibly vivid nightmares for me,almost considered night terrors. Whoever said we dream in black and white never took this stuff cause there was alot of red in those dreams.I stopped taking that stuff and they went away immediately.
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pieface_49
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Re: So I went to the MHNI yesterday
« Reply #12 on: Apr 7th, 2007, 3:52pm » |
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If you think you are dreaming now
"The most common side effect of melatonin is drowsiness or difficulty awakening. Many people also report more vivid dreams; studies have shown that melatonin does not increase the amount of time spent sleeping, but it does increase dream recall."
http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Melatonin
There is something interesting in the above link.
"Stimulants Can Lower Melatonin Production
* Avoid Caffeine in the late afternoon and evening
* Beware of pseudoephedrine and other OTC stimulants"
Read the information on the B category, including B3 and B12.
http://www.justfoodforhealth.com/html/vitamins.html
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| « Last Edit: Apr 7th, 2007, 4:13pm by pieface_49 » |
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When God was passing out stinkers, I thought He said thinkers. I now have a better stinker than a thinker.
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Re: So I went to the MHNI yesterday
« Reply #13 on: Apr 7th, 2007, 7:21pm » |
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MHNI is a good place to go for headache sufferers. Their inpatient facility in Chelsea is a beautiful place ( but I didn't like not having a private room )
Just wonderin' .... Is Dr. Todd Rozen still there ?? He's a GREAT doc !! Dr. Saper is a GREAT doc too !! Both docs are 'down to earth' ... I really liked them both.
Goodluck w/ the 'headaches' !!
UNsolved
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chrisw
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Re: So I went to the MHNI yesterday
« Reply #14 on: Apr 9th, 2007, 9:03am » |
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I think the dreaming aspect of it is that CH seem to occur during REM sleep, and this is when dreaming occurs. Since we are waking up with pain during REM, we seem to remember our dreams a lot better. Youre not having more dreams, you are just remembering them. Good luck.
chrisw
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George_J
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Re: So I went to the MHNI yesterday
« Reply #15 on: Apr 9th, 2007, 9:13am » |
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on Apr 9th, 2007, 9:03am, chrisw wrote:I think the dreaming aspect of it is that CH seem to occur during REM sleep, and this is when dreaming occurs. Since we are waking up with pain during REM, we seem to remember our dreams a lot better. Youre not having more dreams, you are just remembering them. Good luck.
chrisw |
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I believe that's a "bingo", Chris.
I tend to wake up briefly during REM sleep even out of cycle. I'm pretty sure this is simple gun-shyness, and not something physiological.
"Does it hurt?"
"Nope."
"Okay, go back to sleep."
I hate this stuff. Sleeping during a cycle is like playing Russian roulette. 
Best,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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3-foot
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Re: So I went to the MHNI yesterday
« Reply #16 on: Apr 9th, 2007, 12:06pm » |
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on Apr 7th, 2007, 7:21pm, UN solved wrote:MHNI is a good place to go for headache sufferers. Their inpatient facility in Chelsea is a beautiful place ( but I didn't like not having a private room )
Just wonderin' .... Is Dr. Todd Rozen still there ?? He's a GREAT doc !! Dr. Saper is a GREAT doc too !! Both docs are 'down to earth' ... I really liked them both.
Goodluck w/ the 'headaches' !!
UNsolved |
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Yes, actually I was assigned to Dr. Rozen. It's probably too early for me to be singing his praises but I did sleep through the night last night, well mostly.
I shouldn't have said I am dreaming more, but that I am remembering more of my dreams. I have read that everyone has 6-8 dreams in a normal night sleep, but most don't remember them. This last week or so I have been remembering many of them. The melatonin hasn't increased it anymore than it was but I just started it two nights ago, so we'll see as time goes on.
The O2 is really working for me I haven't used anything else for 3 days now. The frequency and pain level has dropped off.
Breathing it through my nose seems to make it work faster than through my mouth. It's difficult at first but then my sinus cavity on that side opens up and it gets easier. I maybe overusing the O2 a bit, I went from 2000psi to 1500 in 4 days. I'm quick to take a hit when I first feel it coming, but I haven't suffered a full on attack because of it. Each time I was able to completely abort within 15 minutes.
Today I'm at work and the tank is home, too big to transport, so hopefully I can mantain for 8 hours. I need to get a portable, but if I keep going the way I am the episode may be over in another week. I hope.
I aborted my last attack this morning, I knew I shouldn't have rolled over and gone back to sleep, but it was only 4:45 am and I didn't need to be up till 7 today. My normal wake up is 5-5:30am. As it turned out I was back up at 5:15 sucking oxygen, 8 minutes was all it took, then back to bed again till 7.
Since then, I am feeling good, now with only 4 more hours to go till I'm on my way home again. I have the Imitrex in my back pocket incase I don't make it.
Looks like I won't need to fill that Vapramil script.
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Judge_Smails
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Re: So I went to the MHNI yesterday
« Reply #17 on: Apr 9th, 2007, 3:33pm » |
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3-foot, glad to hear the O2 is working well for you. I wouldn't rule out the Verapamil just yet though. This is the first cycle I've tried it and it's been fantastic - I have gotten a single hit (knock on wood). I know you mentioned that your mid cycle and are going to try to ride it out, but I can't recommend enough giving the Verapamil a try for your next cycle.
O2 and Trex work wonders, but you should try a preventative so you don't have to stress about always having the abortives.
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3-foot
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Re: So I went to the MHNI yesterday
« Reply #18 on: Apr 10th, 2007, 11:54am » |
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I wouldn't rule it out next time, but I'm trying to avoid drugs at all cost. I don't even want the Imitrex, really.
Melatonin and O2 are ok with me and seem to be working . 30 hours and no attacks.
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E-Double
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Re: So I went to the MHNI yesterday
« Reply #19 on: Apr 10th, 2007, 12:18pm » |
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I went through 18 cycles without meds.
I then was diagnosed and put on meds.
After 2yrs on meds (turned chronic) I decided to detox due to having enough of the side effects with limited help.
I detoxed and have been med free with exception to a few times using an abortive for over a yr.
I am still chronic though the hits seem less frequent and certainly shorter in duratioin than they were.
I use my oxygen and I am happy dealing with mini cycles of high and low activity.
It is my personal choice and I only advocate for one to find their own way towards physical and mental relief.
Good luck and may it be an easy ride.
Blind Melaon Fan.
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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3-foot
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Re: So I went to the MHNI yesterday
« Reply #20 on: Apr 12th, 2007, 2:58pm » |
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It's been a couple days, here's my update. I thought it was getting better, but I was wrong. At least it's getting more predictable now, joy.....
04/10/07 Tuesday
Pain free all day. Went to sleep at 9:15 pm and woke at 11:15pm to one just starting (41 hours pain free). It was mild at first and I hesitated to get up to use the O2. When I finally decided it was for real it was almost too late. It took a full 15 minutes to knock it down. Somehow I knew it would be back again before morning.
4/11/07 Wednesday
I reawakened at 3 am this time it was in full progress. Severe head and neck pain, eyes dry, hot and sweating from head to toe, elevated heart rate, closed up left sinus cavity. I went back to the O2 tank for another 15minutes, no relief this time. I injected with imitrex and it took a good 10 minutes to work, the pain was severe this time, sobbing in pain, couldn’t sit still. Then after 10 minutes, it switched off from full on attack to pain free in about 5 seconds. The imitrex caused a cold sweat again this time.
This morning I woke at 7 am tired and with a shadow of pain that feels like I’m bruised.
It woke me up 2 hours after falling asleep, again. Left eye completely dry, dry throat, elevated heart rate, closed left sinus cavity, temple swollen and hard, but no sweating this time. It was 11:15pm and it was minor head pain by comparison to what was coming later. I learned from last time, got up and hit the O2 immediately. It stopped within 12 minutes. Back to sleep.
4/12/07 Thursday
I reawakened at 3am, again, with the same symptoms as earlier. This time a bit stronger but still aborted after 15 minutes of O2. Then, back to sleep.
6:35 am woke to a pounding headache, much stronger this time. 15 minutes of O2 kept it from getting worse but didn’t abort. I stopped the flow at 15 minutes and went immediately to the imitrex. I hesitated injecting as the headache seemed to be slowing a bit, but then it surged again so I injected. For 10 minutes I was in agony. The pain quickly surged to a 9+ leaving me sobbing uncontrollably from the pain. No sweats from the injection this time. I scared Kona(the dog) and Abby(my wife) both. She is usually asleep during my worst attacks, but today she got to witness first hand the worst of it. I still don't think she really understands the experience, lucky for her. 10 minutes later and it was magically gone, a repeat of the day before but worse this time.
Today I’m tired but no pain is present. Still there is a shadow lurking below the surface that pings me every now and then. My eyes are sensitive to quick movements.
I’m going to get the Verapramil filled today, it’s time to step it up.  
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brian trudeau
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Re: So I went to the MHNI yesterday
« Reply #21 on: Apr 13th, 2007, 5:32am » |
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Anyone ever hear if Shannon Hoon had suffered from Cluster headaches?
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...but then you make me crawl..and I cant be holding on to what you got...when all you got is hurt...
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Skyhawk5
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Re: So I went to the MHNI yesterday
« Reply #22 on: Apr 13th, 2007, 3:06pm » |
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Three-foot, we're almost neighbors, I'm in Ypsilanti near Willow Run Airport. I've been in peak cycle for about 6 weeks now and hope for remission soon. We will get there soon. Mine seem to wind down over time.
I use O2, Verapamil , Lithium, Frova, and Trazadone for sleep. Also use Stadol NS on K-8-10's that stops me from vomiting. A narcotic but I've tried most all other options and my Nuero, Dr. Gerald Riess @ Greater Ann Arbor Nuerology, keeps a good eye on me for those who worry.
I'm not much for posting right now but it will get better. Hey I heard that when you go to MHNI, if you're a smoker you have to quit or not be treated?
Good Luck & God Bless, Skyhawk5 (Don)
PS, I spent 6 days @ Chelsea Pain Unit in 1992 (Dr Saper)
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| « Last Edit: Apr 14th, 2007, 5:53pm by Skyhawk5 » |
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starlight
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Re: So I went to the MHNI yesterday
« Reply #23 on: Apr 14th, 2007, 3:28pm » |
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I didn't know that about the 3 categories that cluster headache people ususally fit into one of them. I have heard Michigan Clinic very good also.
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Re: So I went to the MHNI yesterday
« Reply #24 on: Apr 14th, 2007, 5:03pm » |
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MHNI never demanded that I quit smoking. ( of course all docs suggest it )
The only time I couldn't smoke was when I was a patient @ Chelsea hospital ( MHNI inpatient unit )
UNsolved
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