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        Cluster Headache Help and Support >> Getting to Know Ya >> controlling my demond
        
(Message started by: Melthemechanic on May 2^nd, 2008, 10:20pm)

Title: controlling my demond
Post by Melthemechanic on May 2^nd, 2008, 10:20pm

Hello all ; I'm a newbie here but am no newbie to this condition we all have in common. I've been dealing with mine since the late 80's. yes I've been everywhere most all of you have and i desided that there has to be an answer for this condition . I don't buy the theory that there is nothing that can be done but suffer.
my decission to do something radical came about 6 years ago when in the middle of a bad one my kids came in from playing and wanted me to join them and i found myself verbally attacking them and making them fear me as a monster.. at that point i promised myself that this will no longer happen , I COULD NOT BECOME THE DEMOND THAT HAS AHOLD OF ME. for those who have a family with small children can relate to that.
as my user name reflects i am a mechanic ,i fix things, so i started with the symtems and a book of greys anatomy. the first thing i addressed was the excessive pressure that seems to be the cause of the pain. i noticed that on the onset of an attack the roof of my mouth started to swell a little and then it worked it's way forward and upward twards my eye then back to the side of my face ,the whole time i was suffering the intense pain with no meds ,ice, O2, nothing. I figured it had to be blood flow restriction so i got out the book and found the blood vessel that was the supply and , here's one of the radical parts , took my thumb and applied alot of pressure to that area. just so everyone knows it's between the mastoid bone and the first vertabrea of your neck. i had to push real hard to get any results and it hurt like a #$#@! but to my surprize the presure stopped, it was like a switch . headache gone.. let my thumb off and boom it was back. so it had to be on the return side of the cirulatory system but where. I talked to my chiropractor about it but she had no answer nor did the family dr. so i used this technique to get me through the next few weeks of the cycle.
a couple weeks went buy and low and behold i noticed a twitching in my cheak, ever so slight, then it moved up to the side of my eye within a few hours. this is abnormal nerve activity so i made a mental note of it. that night another cycle began , just like it had for years. one hour after i lay down i'm up with a bloodshot eye and pain from hell. you could set your watch by it. this time i focused on nerve restriction . figuring it was in my upper neck region from studying the book i took a big towel and wraped it from the bottom of my jaw around behind my ears then straight over my head so i could lift the weight of my head off my spine. heres another radical part ( my wife thought i was trying to kill myself ) i put the ends of the towel in the top of a door and slowly slid down alowing my body weight to pull the veribrea apart. ( she walked in in the middle of this ,lol. ) this also after a few minutes aloud the pain to subside. so now I had blood flow and nerve pressure symtems comfirmed so back to the book. the only thing that added up was swolen or damaged discs in the first veribrea area of my neck.off to the chiropractor i went for xrays and tests. well nothing showed up.. so i suffered through the next 2 cycles triyng all type of stupid things like hanging my head over the edge of the bed to ward off attacks with no results. i did notice that durring the week i would not have attacks during the day except after i got home but on the weekends it was totally random except for when i lay down that was a constant.
it was about 3 months after i had the xrays and i was in the middle of a cycle when i took my wife to the chiropractors office for her to get an ajustment and a new Dr had taken over the practice fresh out of school. I schedualed an apointment to talk to him about what i had found and what i had been through and he was quite enthused and interested in it then he told me he would get back to me on what he though and I thought well hit another wall.
a couple days later i went back to him and he checked me over real close, like no one had done in the past and said that spine was fairly normal but that my skull was not setting on the plate like it should, in fact it was off conisderably. he comfirmed that a lot of blood vesles and nerves from the eve and sinus area run through this plate .with my pemision he started workin on getting it right.. Oh My God when he started moving things around the worst bout of headaches i think i've ever heard of one lasted for 3 days at max pain. I knew we had the demond by the tail and it was not going to be easy to get it under control. after about a week things calmed down to tolerable and he worked with me about once a week for a month and then he said it was up to me when to come in. that has been nearly three years ago and the demond that once controled and threatend to destroy my life is now a fluttering brown bat that when i feel it coming on i go get my skull set back where it belongs and away it flies. I waited that long to say anything till i was sure i was on to something
yes i still get the what is known as a shadow here from time to time but it's off to get it fixed . this is something i'll always have to live with but i beleive the days of sitting and stairing at my pistle in the middle of the night in too much pain to pick it up and pull the trigger are over .
LIFE is too special to have to suffer like we have .I hope some of you persue haveing this looked at for yourselves. i can only hope it helps someone else and bring some of the normallcy back to their lives like it has mine

Title: Re: controlling my demond
Post by MinxKittten on May 2^nd, 2008, 10:32pm

wow, radical!!!

i'm gonna have my hubby read this, cuz his neck gets all wacked out too.

Title: Re: controlling my demond
Post by Brew on May 2^nd, 2008, 10:50pm

If what you have can be fixed by a chiropractor, it ain't CH.

Title: Re: controlling my demond
Post by Melthemechanic on May 2^nd, 2008, 11:24pm

Brew ; i never said it could be fixed ,in fact i said i'll have to live with this the rest of my life . all i'm saying is i've found a way for me to control the intensity. it seems no one knows the cause ,all we know are the effects.
i've tried a lot of the other treatments and they helped a little but this has worked for me the best. it may not help you or anyone else . so why not try something new if everthing old isn't working for you. and yes i get ch

Title: Re: controlling my demond
Post by Brew on May 3^rd, 2008, 9:26am

Well, then all the power to you. I hope you continue to feel better than you have.

Title: Re: controlling my demond
Post by vietvet2tours on May 3^rd, 2008, 2:10pm

You don't still hang youself do ya? Try a Neuro. If he confirms your self diagnosis get some oxygen.

Potter

Title: Re: controlling my demond
Post by Annette on May 3^rd, 2008, 4:15pm

on 05/02/08 at 22:20:09, Melthemechanic wrote:

.... i noticed that on the onset of an attack the roof of my mouth started to swell a little and then it worked it's way forward and upward twards my eye then back to the side of my face ,the whole time i was suffering the intense pain with no meds ,ice, O2, nothing.

...said that spine was fairly normal but that my skull was not setting on the plate like it should, in fact it was off conisderably. he comfirmed that a lot of blood vesles and nerves from the eve and sinus area run through this plate .with my pemision he started workin on getting it right.. Oh My God when he started moving things around the worst bout of headaches i think i've ever heard of one lasted for 3 days at max pain. I knew we had the demond by the tail and it was not going to be easy to get it under control.

Hello Mel

I can help you a bit more in your quest to understand the anatomical structures involved in CH. The swelling on the roof of your mouth is one of the cluster ganglions which swell when the parasympathetic/sympathetic systems are activated, which will lead to the activation of the trigeminal nerve causing the pain behind the eye.

You can read this thread, it has excellent diagrams to demonstrate.

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1160235186;start=75

Regarding the treatment with your chiropractor, I dont understand what you mean by your skull not sitting properly on the plate. Was this seen on Xrays and scans? Which plate is this? The skull itself sits on the cervical vertebra number 1 which is very small and very thin. Its the neck muscles that hold your skull in place not this vertebra. There is the spinal cord running through this vertebra. All other major blood vessels and nerve plexus are outside of this area. I do not understand what your chiro means by lots of nerves and blood vessels run through this "plate".

Would you be so kind as to ask him exactly what blood vessels and nerves ( names ) and what is this plate that he is talking about ?

http://i18.photobucket.com/albums/b149/bargainbazzar/neck14l.jpg

Cervical vertebra no 1 is very fragile, forceful manipulation can cause it to slip or crack which can cause damage to the spinal cord. Damages to the spinal cord can cause numbness, tingling and weakness of the arms or worse complete paralysis. Please be very careful when applying any force to this area of your neck.

CH is triggered by a cascade of neurotransmitter activities, from serotonin to dopamine to noradrenaline to melatonin,etc. This has nothing to do with how your skull sits on your neck. People often go into remission by themselves and this can last several years. I am not convinced that by making sure that your skull sits " properly" on whatever "plate" can help CH.

Please note that I am not criticising you, I am trying to understand the scientific basis of your method to be able to evaluate it properly.

Thank you very much for sharing.

Title: Re: controlling my demond
Post by Melthemechanic on May 3^rd, 2008, 4:45pm

lol.. no i don't still hang myself , i only did hat a couple times to try to understand what was going on . but thanks for the consern though.
I'm no Dr and don't pretend to be. all the technical terminalogy is a different language to me. Dr McClelland told me a while back that it would be ok if wanted to ask him about what we had found and what he had done to help me so I'm going to stick my neck out a little here and give out his office phone #.
Dr Brandon W McClelland (419) 946-5921
I don't think he went over the xrays that had been takin before he took over and i know he hasn't takin any since. but I have absolute confidence in him , after nearly 20 years of pain he is the only one who didn't through his hands up and say here eat these drugs then strap this bottle to your side and pay on the way out.

Title: Re: controlling my demond
Post by Annette on May 3^rd, 2008, 5:01pm

I am sorry I didnt mean to put you on the spot. In the first post you said you studied anatomy books and was familiar with blood vessels and nerves, so I thought you could explain what your chiro was doing on a more scientific basis.

It would be great if you can ask your chiro to explain his logics in setting your skull straight to treat CH next time you go to see him. I am sure he is happy to answer questions from paying clients, but I dont think he will appreciate his phone number being advertised on a public forum and to get phone calls from people he doesnt know questioning his practice.

I am glad you are painfree though, hope it lasts.

Title: Re: controlling my demond
Post by Melthemechanic on May 3^rd, 2008, 7:31pm

thats ok being put on the spot has been another normal event in my life. lol.
it seems my 15yr old daughter has takin by book to school and loned it out. got to love your children..i looked on line and found a similar pic and my problem lays in the occipital area . it was not ligning up with the top or #1 vertbrea . the way he checked this on me as far as i can remember is i sat in a chair and he had me move my head around as he felt the vertibrea for straight foreward alignment ,when he got to the top one he and i noticed that my skull was pointing off to the right when the # 1 vertibrea was in the straight foreword position , i could see more of my right shoulder and arm than the left when i looked down at my feet is how i noticed.
I am aware of the neurological triggers . my personal theory is that the pain from this condition has a snowball effect . the more it hurts the more the musles and tissue become sensitive and the more it hurts, opening up the passages and allowing the blood to flow more freely and the nervses to be less restriced has made an enormous difference in the the amount of pain i have to deal with. it went from severe to mild in the middle of a cycle and have been able to control what i consider mild attacks with a few asprin and a little spinal manipulation. the symtems i have are the same as they have always been when cycle is about to start but the cycle itself has been manageable.
PLEASE DON'T THINK i'm trying to push a cure cause there ain't one. only thing i'm saying is this is how i have been '' Controlling My Demon " I still get symtems of an attack but i get right on it and don't let the ball start to roll.we can only treat the symtoms until a cure is found.
I searched for a better quality of life for myself and my family and beleive i have found it . this has and is working for me and if it helps someone else then god has blessed us both

Title: Re: controlling my demond
Post by Annette on May 3^rd, 2008, 7:56pm

Thank you very much for your reply, I really appreciate it.

I have more questions if you dont mind please

1- Do you or the chiro know why your skull isnt sitting straight on your spine? Is it due to muscle tension pulling to the right ? or were you born with it ?

2- Does this only happen while you are in cycle ? or is your skull always pointed to the right, even when you are out of cycle? Does it cause any pain/headache when you are not in cycle?

3- How long does it last after a manipulation before your skull tilts to the right again? How often during a cycle do you have to visit the chiro for this treatment?

4- Would stretching your neck to the left during a hit help with the pain? Have you tried applying ice to the neck area ?

5- Have you asked the chiro whether there is any neck exercise that you can do to keep your skull straight without the need for manual manipulation?

I fully appreciate that you are not pushing for the cure, I am just trying to evaluate how likely this treatment will help other CHers, considering the cost, before making a recommendation to people I know.

Thank you again very much for sharing your experience.

Title: Re: controlling my demond
Post by Melthemechanic on May 4^th, 2008, 12:27am

sure i'll be glad to answer your questions to the best of my ability because a lot of us have a lot of my answers in common.

1 the exact reason for my spine being off is a mystery but all my life i've lived ,worked ,and played hard. I've been in a number of car colisions ,none too severe but all have givin me back and neck stiffness for weeks afterwards. I played football as a kid and was knocked out on the feild more than once, i'm missing teeth from it. I was a big baby 10lbs 9oz with big shoulders , the Dr pulled me out by the head like they do alot with boys. i've been in a few fights and was a bouncer for a few years ,i have been in a few headlocks in my day.lol.and like i've said before i'm a mechanic i hit my head on the bottom of cars and door frames on a regular basis, this is the thing i have to watch the most now that i've gotten wiser. so the odds are that like many other the damage started before i took my first breath and has been getting worse the older i get.
2 after i started doing my crazy little experiments one of the things i've noticed with the onset of a cycle there is soarness to the touch in this area for a day or so then that seems to triggers muscle tension right along with the onset of the pain and the rest of the crap that goes along with the cycle. this is one of my early warning signs now. the soarness that is.
my skull has been off and put back in when i'm not having a cycle and the soarness has not been present but has always been off when i feel a cycle coming on and has always been soar before the cycle as well it seems to go hand in hand. posibly the cycle is causeing the disks to swell as well.
thank god when i'm not having ch head pain is not an issue unless i hit it on something at work.
3. it has been about 5 or 6 months since i have had to have it put back straight and it's been about 2 months since the last mild cycle has passed, because of the cycle warning signs i didnot mess with it 2 months ago it was only off a little so we decided not to bother things at that time. i go to the chiropractor about every 4 to 5 weeks on my own accord for check ups . i'm due for one now.
4-5 during a hit nothing helps the pain except for the radical things i've mentioned and i don't recomend doing that stuff it's not wise to drill your thumbs into your neck for any reason , i was searching for answers. yes i do a regiment of stretches everyday while i'm in the shower with hot water running accross the area. i do my best to keep those neck muscles loose and streched out . it's part of living and dealing with this condition , i know the tighter all my muscles have been the worse the pain was , i learned that 15 years ago. muscle relaxers were the first thing a Dr gave me for my condition before he figured out it was ch and it helped a little ,very little. of coarse when your as loose as a jellyfish how do u know.lol

heres another thing i find interesting the normal cycle that i had lasted for 3 to 4 weeks . starting out about mid pain lvl then peaking in the second or third week and then the lvl would decrease and end.
when u damage a disk in your back it follows pretty much the same pattern and time length . is this coincidental or is there a simalarity

Title: Re: controlling my demond
Post by DragonSlayer on May 4^th, 2008, 2:55am

When I was seeing a chiro for these HAs I bought an "Over-Door Traction Set" (this was in the 80's). It is like one of those clothes hanger things you hang on a bedroom door - it has 2 pulleys and you put a 20# weight on one end (it has a bag to fill with water, I use a dumbell) and there is a head/neck halter that goes under your chin up to the rope then around the back of your head and velcro strips back to the chin strap. (I looked on the company's web site for a picture and it isn't listed there. Out of production?) It is kind of like hanging yourself, I usually sit in a chair and stretch out my neck for about 15~20 min at a time if the HA doesn't get too bad.
It helps with the neck muscle tightness and the stretching exercises he showed me help my neck and shoulders too. While rolling my head I can sometimes get that joint popping like getting an adjustment.
I can't say they do much for the actual CH hits but it helps with the stiffness and gives me something to do during the attack cause I can't just sit there and do nothing.
At first it seems to help alot but as my cycle goes on it seems to loose effectiveness. There is a bold warning on the box not to exceed 20# and I don't know if that is a health warning or a structural warning for the unit. I have pulled down on the weight for brief periods while using it without hurting myself.
I also press on the facial pressure points that resemble the "Vulcan Mind Meld" and use an ice pack or two if the pain ramps up.

Title: Re: controlling my demond
Post by Melthemechanic on May 4^th, 2008, 8:25am

dragonslayer ; ya i've seen those ,never used one though. i was give a device about 10 years ago to try that looked like a neck brace that the EMS squads use except it pumped up pushing on your skull and your shoulders to create traction for the neck. the biggest problem i see with these things is they pull the bones up in a straight line instead of maintaining the natural curve in the neck , posibly doing more harm than good. using one of these during a hit could be counter productive .
the presure point thing worked the good for me . eyes closed, fingers planted in the right spots with both elbows on the table and total focus on deep breathing pulled me through many of nights.