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        New Message Board Archives >> 2006 General Board Posts >> Trying to make some sense of the timeline
        
(Message started by: Neekwa on Mar 29^th, 2006, 1:42am)

Title: Trying to make some sense of the timeline
Post by Neekwa on Mar 29^th, 2006, 1:42am

As previously stated I have been a sufferer for 4 years now. In fact just got over a mild 30 min attack which is why actually im on this page again.

Anyway back on topic, I can't actually pin down that first initial headache. I recall the general time window being in the summer months of 2002. Actually I can't even recall if I just all of a sudden bang! - recieved my first headache or it was a gradual build up to a severe attack around this time.

Im still pondering these events which are as follows,

cica 2001 : I was getting molar pains in the back of my mouth from yet to be removed wisdom teeth.

: I underwent dental surgery to extract the wisdom teeth, four total having two extracted on two seperate visits. During the extraction I recieved no n2o, just the normal dental strength novicane injections. Oddly enough one or two of these injections was placed right in the right rear of my mouth where the upper and lower gums meet. In other words pretty much the exact spot more or less where my CH seem to take hold from. Also the teeth were removed with by all purposes 'pliers' with alot of force (even though I couldn't feel it) being applied to my jaw im sure.

Early summer 2002 : Im developing the familiar CH attacks beggining in my right lower jaw area which intern spread to up and over my right eye area. I assume these are dental related pains and schedule an appointment with my dentist. I decsribe the pain to him, and following a few x-rays he advises me to undergo a route canal on the bottom molar, furthest back on my right side. (the tooth next to the now extracted lower right wisdom tooth)

Fall 2002 : I again expieriencing the CH symptoms and believing this route canal is the now cause for them schedule yet another dentists appointment to just scrap and extract the entire tooth that had recieved this route canal. In light of the CH pain I was looking forward to the extraction in hopes it would finally put an end to these attacks of pain. So I had that tooth removed as well.

Onward to present : All of this dental work to alieviate this problem didn't do one damn bit of good. The fierce headache pains remained as a common occurence and sometime in 2003 I made an apointment with my doctor complaining about them and then was diagnosed with CH.

What im getting at with all of this is did anybody recieve similar dental surgery prior to the onset of CH? Could something related to that, maybe the novicane injections themselves into a nerve actually contributed to developing the CH's themselves?

Another thing im curious about and went unanswered in another thread is this - Is anybody currently recieving some type of disability in regards to this condition? I know for me this is pretty much a daily struggle with at times immense pain and more or less holding me back from full time employment which is really pissing me off, while I await my physician attempting to somehow swing an oxygen setup for me from an insurance company who lables this condition a mere case of migraine attacks. Thanks for taking the time to scan over this latest post.

Title: Re: Trying to make some sense of the timeline
Post by Melissa on Mar 29^th, 2006, 8:51am

Well, the dental surgery could have been a trigger for your clusters, but not a cause.

For myself, I found a possible trigger to bring mine on, was receiving whiplash when I was 16 (and the CH's began a month after). I didn't recognize it at that time, as they only lasted for maybe a week, getting hit once a day, but I know it now.

Take care,
:)mel

Title: Re: Trying to make some sense of the timeline
Post by Neekwa on Mar 29^th, 2006, 10:57am

So you think that possibly anybody has the ability really to develop CH's to a certain degree?

What I mean to say maybe is that the phenomenon lies dormant possibly in a certain grouping of nerves, but a certain event like whiplash or whatever affecting these nerve groupings in a negative way awakens the symptoms.

So maybe what were actually dealing with here is damaged nerves. If that were the case from what little I know about nerves, is that the process of a nerves mending is incredibly slow. This brings to mind a conversation I had with a physician sometime over the prior year regarding this.

In fact now that I think about it I touched on this in general (nerve damage as a cause)...and even more specific the dental trauma as being a sort of catalyst.

His response was absolutely, the dental work may in fact have triggered the symptoms. Yet at the same time he was also quick to point out that in fact modern medicine can't really explain what triggers, or the actual workings of CH's. So a big "could be" in other words.

He also told me that nerve damage is a touchy thing.. For example a nerve that is damaged in someway mends itself at the rate of a few millimeters annually.

It would be interesting to take a poll for example to see how many actually believe maybe in someway some prior trauma may be responsible for developing their migraines. Also what the stats are on the symptoms becoming less frequent or more subdued over the course of time.

Title: Re: Trying to make some sense of the timeline
Post by cootie on Mar 29^th, 2006, 11:26am

As I have mentiond before Brad's ch started 'soon' after sumone dropped a hammer on his head from a garage roof.....Brad was just starting to climb the ladder himself to help install this big heavy clunky satillite system a neighbor bought. Brad was NEVER much of a headache person and rarely got them (cept for hangover style....hee-hee.....self inflicted back then) and still RARELY ever gets a general ha so to speak. But his started rite after the accident and he did have a dent in his head and it knocked him for a loop. His sister has migraines and his mom talks about there great grama havein some sort of terrible ha's and she'd hold a cold rag on one side of her head but no one has any other details on that one. His ch started up HARD too and once it got goin he was pretty much what we'd call chronic. Got no help from docs ONCE I talked him into going !!!!! (almost a year later) Then they went away for a few years and we had no idea what they were and glad they were gone !!! Then WHAM they came back. Fineally got on the rite track when the family semi retired doc did some research and sudgested a neuro and it mite be ch. Once he got on meds he had MORE attacks a day and cycles lasted longer when he went episodic. (every 3 to 4 years) Course we didn't put two and two together and learned that here. He has been 5 years now PF and lovein it. He'll try the injections next go round but were hopeing the NASTIES have moved out of his head. Permanent vacation Pam

Title: Re: Trying to make some sense of the timeline
Post by Melissa on Mar 29^th, 2006, 11:34am

on 03/29/06 at 10:57:23, Neekwa wrote:

So you think that possibly anybody has the ability really to develop CH's to a certain degree?

I'm not sure as to some people get migraines instead of clusters, and vice versa. It could be a dormant gene waiting to be triggered in all of us, like cancer, but that has not been discovered. One thing we all have in common though, is a deformed hypothalamus.

Quote:

It would be interesting to take a poll for example to see how many actually believe maybe in someway some prior trauma may be responsible for developing their migraines.

This has been done ad nauseaum on this site. Do a site search with the words "trauma" and CH and you'll find hundreds of posts about the subject (including polls). AND, we don't have migraines, we have clusters. (better watch your wording ;))

Quote:

Also what the stats are on the symptoms becoming less frequent or more subdued over the course of time.

http://www.clusterheadaches.com/cgi-bin/survey.cgi

edited to add: if you haven't taken it yet, take it now (the cluster survey, which is a button to the left of the page) http://www.clusterheadaches.com/survey/index.html

Title: Re: Trying to make some sense of the timeline
Post by Neekwa on Mar 29^th, 2006, 12:10pm

Quote:

;;D

Heres a little side thought. Since I (or we) have to be inflicted with this annoying little syndrome. I move that we ban together to rename the actual condition itself. Honestly is there anything more goofy sounding as the term 'cluster headache'?

For example, every time I have found myself attempting to explain to the curious onlooker that I suffer from cluster headaches I swear they give me a look like I just invented the term on the spot.

Not to mention when I first heard that name in the doctors office I instantly had a flashback to that movie with Tom Hanks where his doctor told him he was terminally suffering from a 'brain cloud' so he could be manipulated by the doctors evil boss to jump into a volcano.

Cluster is an accurate description of it I guess if you replace the 'headache' part with a more colorful term. Personally I think suicide headache sounds a lot more accurate if were going to commit a label to this thing.

Title: Re: Trying to make some sense of the timeline
Post by Melissa on Mar 29^th, 2006, 12:14pm

on 03/29/06 at 12:10:30, Neekwa wrote:

LMAO!! Hon, you're gonna fit in here just fine. ;;D

;)

Title: Re: Trying to make some sense of the timeline
Post by Redd715 on Mar 29^th, 2006, 12:14pm

I just got back from an appointment with a dentist who temp. repaired my broken tooth. He asked me to explain how this happened, and I did, and he says..."Ok, so you have Cluster Migraines." I explained there is no such thing, I Have Cluster Headaches. He says.... "Oh ok, so you have a mild form of headaches, not excruciating Migraines." Once again I said ...."No...Cluster Headaches are described by even the leading researchists as the most painful condition known. I'd be happy to get you the most current and up to date information if you would like." He states he's a medical professional and has been trained in this area.

He then goes on to say that with this temp. filling and tooth buildup, if I get pain in that area that wakes me up in the middle of the night I'll need a root canal, because that means there is damage to nerve, even though the breakage and slight decay was no where near the nerve as I saw from the xray myself.

Lets see...that would mean I've needed a root canal for what? Twenty years now? ::)

Title: Re: Trying to make some sense of the timeline
Post by LeLimey on Mar 29^th, 2006, 12:22pm

Sounds like he got right on your nerves Pegg!
Even PG says that dentists are the worst thing to happen to a ch'er as they all think they can "cure" us.. a dentist can be downright dangerous as we all know eh? ::) They bring true meaning to "A little knowledge is a dangerous thing"

Title: Re: Trying to make some sense of the timeline
Post by Melissa on Mar 29^th, 2006, 12:24pm

on 03/29/06 at 12:14:44, Redd715 wrote:

Sounds like he needs a root canal right up the arse. >:( Which one did ya go to? I see Dr. Seavecki myself.

Title: Re: Trying to make some sense of the timeline
Post by kcopelin on Mar 29^th, 2006, 12:24pm

Redd,
I too have had dental work-as it appears a whole bunch of us have. Am missing two wisdom teeth and one other tooth on my headache side. Lack of wisdom teeth may explain some things about me ( ::)) but it's pretty disturbing how many of us have had teeth pulled or unnecessary root canals done.
kathy
P.S. I tried your recipe of an ice bag-thanks, works better than peas, stays cold longer and doesn't have to be replaced becasue of squishyness.

Title: Re: Trying to make some sense of the timeline
Post by Redd715 on Mar 29^th, 2006, 12:25pm

Quote:

"A little knowledge is a dangerous thing"

I think this can be applied to more than just dentists... [smiley=laugh.gif] [smiley=laugh.gif] ;)

Title: Re: Trying to make some sense of the timeline
Post by Redd715 on Mar 29^th, 2006, 12:30pm

on 03/29/06 at 12:24:48, kcopelin wrote:

P.S. I tried your recipe of an ice bag-thanks, works better than peas, stays cold longer and doesn't have to be replaced becasue of squishyness.

Glad it works for you Kathy.

Mel, it was Dr, Cooper, over behid the Airport Bar on Highway 10. Which of the 3 Dr. Coopers it was I can't be sure, but I'd say the oldest of the 3 brothers by the white in his beard. (go figure)

Not sure Dr. Seavecki would take a no-insurance patient, and allow a payment plan for what work needs to be done. With all the broken and chipped teeth I have right now I'd be paying the bills off till I'm dead. :-/

Title: Re: Trying to make some sense of the timeline
Post by sandie99 on Mar 29^th, 2006, 12:30pm

I was PF for nearly a year before I went to the dentist. That visit triggered my worst ch cycle so far. No need to say that I'm not that fond of dentists right now... especially because that visit was a repair visit after other dentist made a mistake...

Sanna

Title: Re: Trying to make some sense of the timeline
Post by cootie on Mar 29^th, 2006, 12:32pm

I don't think suicide headahces as a discription name for ch would go over very well as a existing conditon for insurence.....am sure they'd red flag that one and everyone would associate you and your condition with 'possible suicide tendencies'. Since they come for alot in cycels with many (clusters) of them in that short amount or time or clusters of them in a day with chronics it explains itself ok ? I usually stay out of this stuff......so feel free to tell me to STFU. I have suppporter heaches. (sh) And ha issues of my own ta boot. Leaveing the room Pam 8)

PS: my dentist mention'd a root canal on a tooth that was botherin me after bein fixed.......he doesn't do them at his office anymore and sends you to someone else and said the cost is about 900 bucks a tooth ! Huh ?

Title: Re: Trying to make some sense of the timeline
Post by Redd715 on Mar 29^th, 2006, 12:33pm

I'm just waiting for the novocaine to wear off and see if I get triggered back into a round of non-stop hits again the way the tetanus shot triggered them 2 weeks ago.

Title: Re: Trying to make some sense of the timeline
Post by Melissa on Mar 29^th, 2006, 12:34pm

on 03/29/06 at 12:30:18, Redd715 wrote:

Not sure Dr. Seavecki would take a no-insurance patient, and allow a payment plan for what work needs to be done. With all the broken and chipped teeth I have right now I'd be paying the bills off till I'm dead. :-/

I betcha he would! And he's fantastic!! Also, when dealing with insurance, he goes with what's usual and customary on our bill. Doesn't inflate like some I know. Anyway, if you ever think about switching, I highly recommend him.

:)me

Title: Re: Trying to make some sense of the timeline
Post by Redd715 on Mar 29^th, 2006, 12:39pm

on 03/29/06 at 12:34:25, Melissa wrote:

I assume he's CH knowlegable? As far as switching, today was the first time in 12 years I've been to a dentist. Had to get in to who ever had the time for me today.

Not sure how to approach the matter, but if you recommend him, I'll certainly call and see what I can learn.

Thanks Mel.

Pegg

Title: Re: Trying to make some sense of the timeline
Post by Melissa on Mar 29^th, 2006, 12:49pm

on 03/29/06 at 12:39:29, Redd715 wrote:

I assume he's CH knowlegable?

I haven't a clue, although he knows I have Clusters. :-/ All he said to me was that he was sorry to hear I have them.

I took it for what it was worth!

:)

Title: Re: Trying to make some sense of the timeline
Post by Neekwa on Mar 29^th, 2006, 12:52pm

Heres the whole underlying purpose behind my dentists urging that I undergo a root canal.

Simply to make money. For one I had just had four teeth removed and was advised by everyone I know to just have it extracted. When I confronted the dentist with this he seemed, now that I look back 'overly determined' to get me to undergo the root canal. With attempts at convincing me such as..."I think we can save that tooth"...and "Now if you start persuading yourself to just pull teeth, your jaw will sink like an old man....now we can't have you looking like an old man now can we?"

So he gets his root canal and reimbursed by my insurance. Come to find out im back a month later in the same chair to get the tooth pulled. Its like the mechanic that advises you he can rebuild a part on your car over your urging to just replace the part. Then there you are a month later after the part fails buying the new part from the same guy.

Title: Re: Trying to make some sense of the timeline
Post by Opus on Mar 29^th, 2006, 1:18pm

on 03/29/06 at 12:10:30, Neekwa wrote:

Heres a little side thought. Since I (or we) have to be inflicted with this annoying little syndrome. I move that we ban together to rename the actual condition itself. Honestly is there anything more goofy sounding as the term 'cluster headache'?.

I always thought Cluster Attack Syndrome sounded better.

on 03/29/06 at 12:14:44, Redd715 wrote:

...."Ok, so you have Cluster Migraines." I explained there is no such thing,...

Yes there is and they are nasty (http://www.ouch-us.org/chgeneral/chandrelatedha.htm) (5th type listed)

Opus/Paul

Title: Re: Trying to make some sense of the timeline
Post by seasonalboomer on Mar 29^th, 2006, 1:33pm

on 03/29/06 at 13:18:30, Opus wrote:

I always thought Cluster Attack Syndrome sounded better.

I'm of the opinion that the first six of George Carlin's Seven Dirty Words, spoken quickly together is the right name:

"Sh&*, Pis%, F&*k, C&nt, C#$ks&*ker, M&*h&rf&*$er"

At least that's what I call it around the house.

Scott
;)

Title: Re: Trying to make some sense of the timeline
Post by Ghost on Mar 29^th, 2006, 2:16pm

#7 Tit5

;;D ;;D 8)

Title: Re: Trying to make some sense of the timeline
Post by tanner on Mar 29^th, 2006, 2:37pm

Paul, as always you manage to come up with clinical information that just blows me away ! That is the first time that I have ever seen an actual study/observation that included my diagnosis. Dr's Saper in Michigan and Johnson at Mayo diagnosed me as cluster/migraine varient syndrome. Although the only explanation they gave for the term was the fact that I am very photo-phobic and that my attacks often far outlast the 30 to45 min. time frame. Some go all afternoon and night.
I show no other of the precursors for migraine. My current Neuro, Dr Peter Schilder says that there is nothing migraine like about my HA's. Since I am light sensitive even when not under attack and he says that there are plenty of other clusterheads whose attacks don't fit into the little time box. Still it was nice to see the term on paper.
...............................tim

Title: Re: Trying to make some sense of the timeline
Post by Neekwa on Mar 29^th, 2006, 2:58pm

Quote:

Although the only explanation they gave for the term was the fact that I am very photo-phobic and that my attacks often far outlast the 30 to45 min. time frame. Some go all afternoon and night.

Wow, I just can't imagine going through extended periods up to that length. I fall into the 30-45 min catagorie, and sometimes upwards of an hour. Even those time windows are lengthy to be in outright pain.

I have gotten to the point where I actually yell out in frustration, my breathing becomes eratic. Towards the end im just exhausted mentally and physically. My body tempature seems to also increase during the attack, so really im utterly helpless. At times I think to myself what if I had to spend every waking minute with this pain in my head, terrifying thought.

Hopefully you don't have to go head on with the peak pain for that extended of a period, I think I would outright pass out. After the first hour or more are you just bombarded with shadow type pains? Thats what hits me sometimes an hour or more afterwards, little streaks and bolts of pain lighting up the same areas that the headache was grinding away at.

Title: Re: Trying to make some sense of the timeline
Post by tanner on Mar 29^th, 2006, 3:30pm

Neekwa, I'm sorry I should have greeted you and told you I am glad/sad you have joined us. I just got carried away with the post by OPUS he is truly knowledgeable about this and a lot of other stuff.

To answer your question my typical day will start out fine with just shadows of the previous nights horror. At about 3:00 EST, US they will start to build with short hits and short breaks as the pain goes up the KIP scale the hits will get longer and the breaks shorter until it reaches a point where I can't differentiate any more. During good times I will peak out at about a 5. during a bad time they will go all the way to 9s and 10s and I will go nuts until my body is eventually exhausted enough to go unconscious but it is not what I would call sleep. Last night I hit a solid 10 and yet after some very strenuous walking and cold air I was able to climb into bed with the help of Ambien this morning and get 4 hrs. of wonderful no dream sleep.

I don't think I am the only Chronic around here with similar cycles but I hope there aren't too many!

nice to meet you, pfdans............tim

Title: Re: Trying to make some sense of the timeline
Post by Opus on Mar 29^th, 2006, 7:41pm

on 03/29/06 at 14:37:19, tanner wrote:

Paul, as always you manage to come up with clinical information that just blows me away ! That is the first time that I have ever seen an actual study/observation that included my diagnosis.

The OUCH site is a great resource (http://www.ouch-us.org/index.shtml) ;;D

Thanks, I have been trying to keep up to date on this rare condition since my first one. I get very few attacks like that thankfully, because they are unabortable and always last 4 hours. My normal clusters are abortable and last 2 hours if not aborted.

Opus/Paul

Title: Re: Trying to make some sense of the timeline
Post by thebbz on Mar 29^th, 2006, 8:12pm

Cluster/migraines here. I get both and they are different. There are others here as well, and will tell you the same. Lucky I guess.
As far as the disability, I have had this shit 27 years now and have in the past lost jobs and wifes. I think CH has something to do with that but that would depend on who you talk to. ::) I haven't after some consideration once or twice brought myself to apply. I have struggled yes but the gains mentally of working through these and still kick a$$ on others in the same field is so encouraging. Please tell me you reconsidering this..you are so young. Daily struggle yes ...but it builds character and strength. We hurt worse than others can imagine and still survive do well, and live. Take that you demon bastard. [smiley=bigguns.gif]You have so much study to do. You dont have time for disability. You need an abortive..transitional treatment and a prevent. Study your condition you will see. It does take a plan and timing to make it to the workplace each day.
Hang in there I can see you have what it takes in your posts
[smiley=twocents.gif]