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Neekwa
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Please Read
« on: Mar 24th, 2006, 5:51pm » |
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Hi, my names Todd. Im a 28 yr. old male from Portland Ore who has been diagnosed with 'cluster headaches' for over a year now. To begin I would like to share my symptoms, and situation a bit at length. Hopefully not too much at length, the last thing I would want to do is give anybody a headache by reading this initial post.
I started developing signs of cluster headaches I guess when I was 24 yrs old. Early on I related them to after effects of dental surgery (wisdom teeth extracted), but I have since learned that is not the case. At the time I never knew of the term cluster headache until I finally went into my physician complaining about them.
Picture this, my physician left me in a little room then returned with two other physicians who approached my position on the examiners table with what appeared to me as caution...(like they were just about to lay some horrible news on me). I admit I started freaking a bit, and expected them to tell me I was suffering from a tumor or something similar. Instead I was stunned when they told me what a rare individual I was, and that I suffered from a rare condition known as cluster headaches! Being told that I may need to undergo oxygen treatments was a bit too much at the time, and I remember thinking "no way am I going to be walking around with an oxygen tank in my mid 20's"..."I want out of here!"...I will deal with the headaches alone before I strap an oxygen tank to my back or something.
Well now im considering it actually, the thing is my insurance won't cover the tanks even though my physician is trying on appeal. So I have never even tried oxygen before to subdue an attack which I can only describe as follows -
Initially I will get maybe a tingle sensation in my lower right jawline, or more often than not the attack will be initiated with a simple sneeze. Slowly the attack builds...I get a mind numbing dull throb seemingly in my right jaw structure, The closest thing to describing it is if you have ever been eating and inadvertently caught a bone in between your gums at the back of your mouth.
That initial pain of chomping and catching it on your gums comes close to describing the pain. Only in this case it is ongoing, and spreads to over might right eye (which tears up)...and lately at the lower right base of my neck.
Again the trauma is always on the right side of my head, and never deviates from there. My right sinus also clogs up, and at times drips while undergoing an attack as well. Other factors, sometimes during the height of an attack my breathing becomes shallow just from the immense pain. Other odd phenomenon I believe are linked to these headaches include the following, (and im curious to know if anyone else has had them as well)
Individual teeth will at time become increasingly numb then days later return to normal. One time the area around my right eye actually puffed up although this was a one time occurrence over a year ago. Another strange thing and occurred only once was a saliva gland in the again right side of my neck instantly ballooned to the size of a golf ball.
I immediately made a dr.s appointment and was advised to put lemons in my mouth to 'unclog' the gland. This worked however, after a few days it returned to normal and has never resurfaced. An odd thing about it is when the headaches begin to subside sometimes after close to an hour, I get an odd sensation in my right saliva gland.
Currently here is what I am taking to combat the attacks which are almost a daily occurrence for me, differing only in severity. Im taking a prescription prescribed as VERAPAMIL (Generic for CALAN SR 120 mg) which have little if any effect. I have tried 'Imitrex' again with no favorable results whatsoever. My main means of combating an attack now for upwards of four years is forcing the right side of my head into a pillow, and 'toughing' it out.
This goes hand in hand with trips to the sink, running the tap on its coldest setting and sticking the right side of my face under the tap which briefly numbs the throbbing but doesn't of course alleviate it. This is actually starting to impede a lot of my time. Currently im out of work because I don't know how I could function on a job in the midst of an attack. Trust me I would have to drop whatever im doing to cradle my head or run for a sink. Is this not a disability or what? Im looking forward to gain whatever kind of helpful insight I can from the forum, glad to be on board, and at the moment headache free.
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Jonny
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Re: Please Read
« Reply #1 on: Mar 24th, 2006, 6:14pm » |
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on Mar 24th, 2006, 5:51pm, Neekwa wrote:| I will deal with the headaches alone before I strap an oxygen tank to my back or something. |
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Dude, you dont walk around with a tank strapped to you.....LOL
You hit the 02 when you feel the beast coming for 15-20 mins.....it dont work for everyone though.
Sorry you have to be here, but welcome aboard......read every thing you can here. you will be amazed at how fast you will know more about Ch than 85% of docs.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Guiseppi
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Re: Please Read
« Reply #2 on: Mar 24th, 2006, 6:19pm » |
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With few exceptions your headaches run like mine. I don't get numb teeth but the pain sometimes feels like it's coming from an abcessed tooth!!
Give in to the oxygen!!!! I've been battling these things for over 25 years and oxygen works like magic. Imagine feeling the tingling and tightness in the back of your neck, your eye starts to tear up, you start breathing pure oxygen, and the monster is gone!!! That's how it works for me, please read the oxygen link on the left as it has to be used correctly to be effective. You are an incredibly lucky man to have found a doctor who knows what cluster headaches are and how to treat them.
Verapamil didn't work for me either but your dosage sounds way low. I use lithium, 1200 mg a day when on cycle and it stops about 80% of the headaches.
Welcome to our message board, when you find something that works please let us know, and please give oxygen a try, it's not just for old farts!
Guiseppi
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Melissa
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Hiya Todd. Do your CH's come mostly at night, or during the day or both? The O2 doesn't need to be carried around all the time, it's only used when you begin to feel an attack coming on.
As for the imitrex, were you taking pills or injections? The pills won't kick in quick enough to abort your attack, but the injections work very quick. I've killed mine in the past within 7 minutes after injecting.
Check out this link --> http://www.ouch-us.org/chinfo1.htm
It has LOADS of information to help arm yourself for doing battle.
All in all, glad you found us.
Welcome home!
 mel
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Neekwa
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Re: Please Read
« Reply #4 on: Mar 24th, 2006, 7:01pm » |
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Thanks for the swift feedback. In regard to the oxygen, and being embarrassed by it or what not. That was just my initial reaction when I first heard it as an alternative in the doctors office over a year ago.
Im dying to try it actually, and am even aware that there are small portable units that you can keep tucked away in your car for example. In fact if oxygen did the trick of stopping these suicide headaches I would gladly strap on an oxygen tank that resembled a WWII flame thrower if that's what it took.
The thing that has stopped me really from trying the treatment is the cost, and im awaiting feedback if my doctor can swing for my insurance to cover it. Currently he's filed an appeal to my health insurance. A few weeks ago they wrote him back and demanded I undergo heart tests among other things and he was getting annoyed replying that the request is for headaches!
They can't seem to understand that for some reason. So if this appeal fails im just going to obtain the tanks myself. My doctor has offered to let me use the oxygen at his office during an attack to try it out, but of course its unlikely that im going to jump in the car during an attack and drive over to the doctors office.
I am just really fed up with the headache situation on a daily basis honestly. A few months ago I made the mistake of going out and attempting to have a good time with a few friends. We ended up at this dingy little pub and right into my second bottle of budwieser bang!
The familiar onset of the headache started right there at the bar. Another thing I have noticed is that alcohol, even beer seems to invite an attack. Anyway I started fretting over what I was going to do. I'm sure you are all familiar with what complete morons we look like when trying to describe the situation to somebody and using the term 'cluster headache'.
For fear of being perceived as lowering my head into my arms at the bar as if I was going to be sick from one and a half bottles of budwieser I retreated to the bathroom of this place to shove my head under a cold tap to try and stifle the pain.
In wanders this patron and instantly sees me appearing to be sweating from the beads of water accumulated on my head, and attempting to free up my right sinus. He asks me "Hey, you got anymore?"...."Is it good?"
It took me a minute to figure out that this guy was wondering if I would share a little bit of my cocaine supply with him there in the bathroom of this place. I told him that I was suffering from a migraine and I think he took that as a cheap diversion on my part to horde all of the cocaine for myself. Its little annoying things like that and the situation im put in in public with dealing with these migraines.
I have since just learned to lie, and tell the curious that im having a bad toothache.
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Guiseppi
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Re: Please Read
« Reply #5 on: Mar 24th, 2006, 7:32pm » |
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I should have mentioned, alcohol is a big time trigger for many of us. And it does get really old trying to explain the beast to regular people, we understand believe me!!!
Guiseppi
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Neekwa
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Re: Please Read
« Reply #6 on: Mar 24th, 2006, 9:18pm » |
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Quote:| I should have mentioned, alcohol is a big time trigger for many of us. |
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Alcohol and ciggarettes also. I am a smoker, and if I overdue it with the ciggs I tend to get an attack also. With alcohol normally early on I will suffer a 40 plus minute bout of pain, then after it subsides I can drink into oblivion without a repeat attack for some reason if I chose to.
What is puzzleing to me is physicians looking me point blank and saying we really have no clue as to what is triggering these migraines or what exactly is going on inside my head. I think I have asked close to ten times now if im at risk of developing an anyurism or some kind of fatal side effect. The answer I always recieve is no which is somewhat comforting, but in the pressence of that full fledged pain I start imagining otherwise. Asking myself is this headache going to actually kill me right here?
Sounds crazy in regard to a migraine but seems logical when suffering mid attack. I recall reading somewhere that what is occuring is nerve endings on the brain are actually expanding and contracting in some fashion.
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RichardN
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Re: Please Read
« Reply #7 on: Mar 25th, 2006, 1:36am » |
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Hi and Welcome
First off . . . someone please post the schematic of the head showing the trigeminal nerve and arteries . . . just don't know how to do it.
When you see the schematic (on the OUCH website I believe) you will see that the tri-geminal nerve is a path for your pain . . . .and running right beside it are arteries. For whatever reason (Hypothalmus considered possible culprit) the arteries dilate and put pressure on the adjoining nerves . . .behind the eye, sinuses, teeth, neck etc. The reason your doc (correctly) wanted the heart tests is to make sure you don't have any arterie blockage (as I do) which could make triptans (like Imitrex) dangerous (or fatal) to you. Imitrex is a constrictor . . . to take the pressure off the nerves . . . however, the drug doesn't just constrict vessels in your face it also constricts the arteries in and arround your heart (and elsewhere I assume) which is VERY dangerous if you have blockage. Now . . . when you inhale 100% 02 at 12-15 lpm, the brain says, "whoa, too much oxygen" . . . and constricts the dilated vessels, taking pressure off the nerves . . . pain goes away . . . in minutes if used early-on in the attack.
You owe it to yourself to try this therapy at the earliest. Let us know when you get your set-up and we'll walk you through it. You need a 15 lpm regulator and a non-rebreather mask (the one with the bag) or clustermask.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Richr8
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Re: Please Read
« Reply #8 on: Mar 25th, 2006, 1:48am » |
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http://www.ouch-us.org/index.shtml
There you go.
PF wishes.
Rich
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| « Last Edit: Mar 25th, 2006, 1:49am by Richr8 » |
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Neekwa
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Re: Please Read
« Reply #9 on: Mar 25th, 2006, 3:10am » |
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Hey RichardN, thanks for that info. After I would say 8 or more trips to the doctors office I have learned more from the previous two posts.
Regarding the imitrex, I was prescribed the 'one shot' nozzle types that you administer into your nose. Beforehand I was never warned of the dangers of using that medication if heart irregularities exist. The insurance provider, not my doctor requested the heart tests due to the request of ordering the oxygen, and not the imitrex.
Believe it or not out of all of my office visits not once has my head been scanned or any real tests been undertook by my physicians. Regarding your heart condition, what symptoms were present if any that made you seek out advice on the condition of your heart?
For example very rarely (unless a figmint of my imagination) I will feel an irregular 'skip' or rythem that is brief. Also at a young age (infancy) actually it was discovered that I had a heart mumor, but I have of course since then had my heart checked and it was deemed normal. These were just regular test with an otheloscope (sp?)....listening to the beats etc. No scans were ever carried out, and I have always been told that the heart murmor would have long closed itself up.
Great info on the 0'2 and this is the first spot I will hit if I have further questions about it.
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Neekwa
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Re: Please Read
« Reply #10 on: Mar 25th, 2006, 3:26am » |
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Back to Mellisa
Quote:| Do your CH's come mostly at night, or during the day or both? |
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Both. In fact which is really annoying is at times I will be exhausted at the threshold of sleep and woken up by an attack. I have even noticed that if I lay a certain way (my hand cupping my chin for instance) that will bring on an attack also.
Its really haphazzard actually, there is no pattern whatsoever. At times I can have up to 5 a day, then zero the following day. I can have small ones which aren't even too bad, then killer ones where I wish I could be unconcious just to escape them.
I was offered the injections as an alternative also but i have a phobia about needles lol. Im hoping oxygen will be the thing im looking for. Its been four years for me actually of just taking the pain. In fact after this long im used to it f you can believe that. Of course that doesn't make feeling your head being lit up any easier, but its something I have learned to cope with for 45 minute torture sessions at random. Thanks for the welcome.
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RichardN
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Re: Please Read
« Reply #11 on: Mar 25th, 2006, 5:53am » |
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Hey again Todd
I have had chest pains to varying degrees for several years . . . and a few panic attacks. Also heavy smoker for many years. Had done stress tests for heart prior to the arrival of CH (1/01).
A few days after coming here in 2/02, I had what still ranks as the worst attack ever . . . .2-3 hrs of agony in the woods by myself. The next day, armed with the info from this site I insisted on a change in my treatment . . . I was exhausted, desperate, and . . .loud. I requested Verapamil, 02, and Imitrex. He wanted me to up the dosage of Atenelol I had been taking (Vioxx prior to that). I maintained my insistance and he relented on the Verapamil and the 02 (tho he prescribed 4 lpm with nasal canulae . . . which is useless to abort a CH . . .but I had the script). He would't prescribe the Imitrex without a stress test for blockage . . .which was positive . . . followed by a heart cath which (again) showed blockage, but not enough for a stint . . . but enough to rule out Imitrex for me.
Medicare and other insurance won't cover 02 unless you have low blood oxygen levels (which mine of course are fine) . . . but that takes about 20 seconds with one of those little clip on your finger doohickeys. That's the first time I've heard of cardiac tests required for 02 use. Perhaps some of the real pro's here have some info on that.
The night attacks are common here, and why when in a bad cycle we fear sleep. But with an 02 tank by the bedside and the ability to kick his ass within 10-20 minutes . . . you lose much of that fear. Haven't had many go over a Kip 6 in a while. I can live with the beast if I don't have to "dance" with the bastard.
Read up on Melatonin (OTC) helps many with the night hits . . . can make you a bit groggy . . . take 30-45 min before bed. Most use 6-9mg. Groggy to the point that when I first started using it, I would wake with an attack and it would take me a bit to figure out what woke me up, then, "oh yeah, him again", and reach for the 02. But generally I think many find it reduces the frequency and intensity of attacks.
Alchohol is a major trigger for me . . . quit 2/02, with the exception of occasional "test" sips of my wife's brandy or a very small ammount of wine . . . almost always will have a shadow within 15-20 min. . . . . and then kill it with the 02.
Keep reading . . .keep asking
Be Safe,
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Neekwa
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Re: Please Read
« Reply #12 on: Mar 25th, 2006, 7:45am » |
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Quote:| I have had chest pains to varying degrees for several years . . . and a few panic attacks. Also heavy smoker for many years. |
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< --- heavy smoker as well. In fact I was considering quitting thinking it was worsening the situation. But after cradling your head for close to an hour in extreme pain the first thing I want is a ciggarette to unwind from it all. Another thing that has put me at ease regarding that diagram that was linked is that nerve running along the jawline. That is the exact spot where my attacks seem to stem from.
Until viewing that here I still held out on a remote chance that it may in fact be a dental problem. Obviously thats not the case, and many of times I worried that in fact some kind of poison was entering into my head due to shoddy wisdom teeth extractions or what have you when I underwent dental surgery. Big relief to see the actual nerve that is acually causing the pain sensation itself.
Quote:| A few days after coming here in 2/02, I had what still ranks as the worst attack ever . . . .2-3 hrs of agony in the woods by myself. |
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My god I can only imagine. I don't think I have ever suffered that long but I recall my worst attack to date. Halloween 2 years ago, while casually drinking at a party it hit unbelievably strong. I had to walk out and took refuge in a darkened alleyway. I sat there for close to an hour in extreme agony to the point where I had long streams of saliva hanging out of my mouth. (not a pretty picture but at the time all that mattered was focusing on trying not to focus on the pain.)
Quote:| Medicare and other insurance won't cover 02 unless you have low blood oxygen levels |
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Which is absolutley asinine. Take the Imitrex nasal prescriptions that I was given. Each one alone cost around 40 dollars and was a one shot treatment. After that it was to be discarded, not to mention the first few times administering it I instictivley drew back from actually administering the whole thing into my right sinus properly.
Quote:| I maintained my insistance and he relented on the Verapamil |
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That name sounds really familiar to me. I may have had a go with it I think. I recall small blue pills with a name similar to that prescribed from last year. As far as you having the same condition or maybe even worse. How do you cope with this or alot of others here on the job for example? Oxygen im sure can't always be in reach and if so seen on the job adminstering it im sure would raise alot of eyebrows. Maybe even make an employer think twice about employing you.
Again I have been suffering CH now for upwards of four years with a break from it for maybe a week, two at the most. Supposedly, I have been told most people get somewhere in the range of 6 to 8 months with no attacks. That has never been the case for me at all. Are there any cases of anyone recieving a disability for this condition? Afterall thats what it is, and how I at times feel knowing another attack is just around the corner no matter what I do. Im actually fearing landing another job only to be embarresed out of it due to complaints that im off in the bathroom for an hour with my head under a cold faucet.
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