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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New to CH and the site.
        
(Message started by: TonyYZF on Sep 16^th, 2006, 7:05pm)

Title: New to CH and the site.
Post by TonyYZF on Sep 16^th, 2006, 7:05pm

Hello, my name is Tony. I am 37 years old.
I am new to CH and this is my first post on this site. I have been recently diagnosed with CH. I was fortunate (I think?) in that I have not suffered for years before I was diagnosed. At the same time, though I am frightened and in denial about my diagnosis/sentence. I do not have an established pattern yet and I do not know if I am looking at episodic or chronic CH, or if I really even accept that I have CH.
My personality is somewhat obsessive so I have researched and researched the issue. Logically the diagnosis makes sense, but since I have not had multple cycles yet I am reserving that deep down feeling that maybe it is something else and I will be done with it.

One area of confusion for me is shadows. I have read dozens of threads on the message board but I have some doubts. To rewind a little, in late july I started having severe cluster-like headaches/facial pain. My upper and lower jaw were involved along with my eye, ear, temple and neck, so I thought maybe I had an abcessed tooth. I went to the dentist where they could not find anything wrong with my teeth and with my watery eye and stuffy sinus they said it might be a sinus infection and they referred me to medical.

I saw the doctor who said it might be a sinus infection which he treated me for and also noted that he thought I had Temporo Mandibular Joint Disfunction Syndrome (TMJ). He perscribed antibiotics and antihistamines.

A couple of days later the headaches were so intense I went back and was seen by the previous doctors boss. He said it was TMJ causing the pain and perscribed Indomethacin and Darvacet. The Darvacet wouldn't even touch the pain. These docs were at an acute treatment center, so I was referred to follow up with my Primary Care Provider.

The attacks were still getting worse and I saw my doctor a few days later. He also agreed that it was from TMJ so he referred me to a TMJ specialist and perscribed Vicadin for the pain. Even two Vicadin wouldn't touch it during an attack.

I saw the TMJ doc who said it wasn't TMJ and said it sounded like cluster headaches and referred me to a neurologist and also I saw a dental surgeon that day as I did indeed have a bad tooth so I got a root canal that day, though it wasn't very bad, just had a dead root with no abcess. By the time I saw the TMJ doc, the attacks had settled way down after they peaked out one day. Incidentally I had already finished a full ten days of the indomethacin with no relief at that time.

I am in the Navy so I had to go out to sea for a couple of weeks before I got in to see the Neuro. He was glad that TMJ was ruled out and noted the lack of response to Indomethacin. He diagnosed CH and put a list of meds including O2, Imetrex and a Medrol pack so when it gets bad again, I can get the scripts fast.

Sorry so long winded....getting back to my real concern at the moment....

Like I said earlier I am having difficulty accepting where I am now. I think mostly because I have no pattern to verify that this is indeed CH. I have been reading this site for several weeks now including literally thousands of posts trying to find the that little tidbit that will convince me that I shouldn't be here, but so far that hasn't happened. I think I am just feeling sorry for myself and I am affraid of going back to the bad hits.

One thing I am having trouble trying to figure out is shadows. I was in the severe part of the cycle for about two weeks which ended about the 15th of August. Since then I have had daily pains that constantly reminds me of the bad hits, only milder. Most days they are 2 or 3 on the Kip Scale and sometimes 4 to 5. I have had some beers with no notable effect, but I do not know if I am alcohol sensitive. When I was in the bad part of the cycle I didn't drink, but that was because I felt so bad and was so tired from sleep interruption that I didn't want to. Anyway if I am indeed having shadows, is the concensus that PF is without the Heavy hitters or does that include shadows? In other words am I still in the cycle since I am still having regular shadows or did the cycle end when the bad hits ended and this is the residual...What I am really trying to figure out is the likelihood that I will be chronic or is that already ruled out.

I am getting ready to go overseas and these shadows are haunting me every day stressing me out wondering if it is just the lull before it starts again.

Whewwww....

Got a lot of pent up concerns I guess.

Thank you in advance for any input.

Is there a real-time chat? I haven't been able to find it if there is.

Thanks
Tony

PS. I am a motorcycle/dirtbike fanatic if anyone is interested.

Title: Re: New to CH and the site.
Post by Jonny on Sep 16^th, 2006, 7:19pm

Your not chronic, dude.......and the shadows should end.

Keep after the doc for meds....even samples of what your on.

Good luck!

Title: Re: New to CH and the site.
Post by maffumatt on Sep 16^th, 2006, 7:23pm

Hi Tony, glad you found us but sorry your here. We so have a chat ........ http://www.clusterheadaches.com/chat/

By reading your post it looks like your cycle is ramping up. For alot of us we get low intensity hits to start with that build in intensity and freqency over a couple of weeks, then they peak for a week or two, then start decreasing.

Title: Re: New to CH and the site.
Post by Kevin_M on Sep 16^th, 2006, 8:11pm

on 09/16/06 at 19:05:20, TonyYZF wrote:

I saw the TMJ doc who said it wasn't TMJ and said it sounded like cluster headaches and referred me to a neurologist

Looks like a long go-round before you got to this, but glad this was careful enough to rule out TMJ before any procedures were taken mistakenly, and he was aware enough of CH to refer you to a neuro. :)

Quote:

I got in to see the Neuro. He was glad that TMJ was ruled out and noted the lack of response to Indomethacin. He diagnosed CH and put a list of meds including O2, Imetrex and a Medrol pack so when it gets bad again, I can get the scripts fast.

The neuro sounds fine, he knew about no response to Indo and started by prescribing good abortives. However, preventives may also follow in the future. ;)

Quote:

One thing I am having trouble trying to figure out is shadows. I was in the severe part of the cycle for about two weeks which ended about the 15th of August. Since then I have had daily pains that constantly reminds me of the bad hits, only milder. Most days they are 2 or 3 on the Kip Scale and sometimes 4 to 5.

Actually, here it sounds like the cycle may have peaked and there is a gradual subsiding of the episode. They usually don't go away completely fast and my simply weaken, resulting in the "near" hits, like what you mention.

Quote:

When I was in the bad part of the cycle I didn't drink, but that was because I felt so bad and was so tired from sleep interruption that I didn't want to.

This was good. Nothing like compounding an already bad situation.

Quote:

Anyway if I am indeed having shadows, is the concensus that PF is without the Heavy hitters or does that include shadows? In other words am I still in the cycle since I am still having regular shadows or did the cycle end when the bad hits ended and this is the residual...

In my opinion it seems like this is the residual. You'll know if this is not the end. :(

Quote:

I am getting ready to go overseas and these shadows are haunting me every day stressing me out wondering if it is just the lull before it starts again.

Bring the Imitrex, and the script for the oxygen to see if the doc on board has any. I don't know about Navy stuff though.

Just my opinion Tony, but if you were still in cycle, it would be much worse now, as you have experienced already. Don't take chances and stay prepared.

Good luck and glad you found us.

Title: Re: New to CH and the site.
Post by TonyYZF on Sep 16^th, 2006, 10:03pm

I would like to thank everyone so very much for your prompt responses. I am sure I am only overthinking things. My wife keeps reminding me not to borrow trouble.

From your responses and everything I have researched I think it is just the tail end of the cycle. I just wish it would finish already.

I will definitely check out the chat.

Thanks again.
My best wishes to all.

Tony

Title: Re: New to CH and the site.
Post by georgej on Sep 16^th, 2006, 10:55pm

Hi Tony, and welcome.

You're new to this, and you should know that sometimes it takes a little time for an episodic to settle into clearly-defined cycles. I agree with Jonny that you're certainly not chronic.

It sounds as if your present go-around is ramping down, although I wouldn't guarantee that that is the case. Not to be negative, but I'd continue to stay away from alcohol for the time being, just as a precaution.

Shadowing just goes with the territory. If you're shadowing without full-blown hits, chances are, again, that you're on the downslope. Don't let them freak you out.

And hey--it's not a "sentence", even if it feels that way sometimes, even to us old-timers. It's just the way it is. If they continue, it's only a part of who you are, nothing more. You can live with this, and live fully. The upside is that being a clusterhead will force you to be tougher than boiled owl sh*t. And that's not a bad thing.
;)

Ask, explore the site, get to know everyone here. You're among family now. Welcome home.

Best wishes,

George

Title: Re: New to CH and the site.
Post by chewy on Sep 17^th, 2006, 8:33am

Talk to your Doc about a preventative. Verapamil is one of the more effective and favorable choices.

Title: Re: New to CH and the site.
Post by nools on Sep 17^th, 2006, 11:22am

Hi Tony,

I'm new to this site to and in a matter of days it has helped me a great deal.

I'm in the same situation as you at the minute. the worst attack of my cycle happened about 3 weeks ago and ever since they have been decreasing although I do have shadows 99% of the time -and it is quite worrying although it does come with the package.

I've had 3 cycles now and each time - after the worst of the worst attack - i can have shadows up to 2 months after, although I still do have attacks now and again, but not so painful as to feel like chopping your own head off!! When i do have shadows, i do allow myself a drink or 2 and it normally doesn't affect me. I would say that you are still in your cycle and they will go away in time and you might have months, maybe years of pain free bliss.

You're actually really lucky you've been diagnosed! I haven't as no-one will listen to a bloody word I'm telling them. I've had no medication or anything so when I do have an attack i can do nothing. I'm now in process of becoming bloody minded, seeing my doctor and demanding I see a neurologist and this is because of the advice I've gotten from people on this website. You're not alone, face the fact that this is part of who you are now, and live your life like you always have. It doesn't have to change anything!

Don't worry by telling yourself your chronic, I don't think you are! All you need to do now is hang in there and wait for the shadows to go and they will!!!

Best of luck

Nuala

Title: Re: New to CH and the site.
Post by TonyYZF on Sep 17^th, 2006, 8:32pm

Thanks nools, sounds like the same thing.

Appreciate everyones comments. Has put my mind somewhat at ease...so to speak.

Tony

Title: Re: New to CH and the site.
Post by TxBasslady on Sep 18^th, 2006, 12:09am

Hi Tony,

I see that the doc gave you a Rx for 02.

02 works great for alot us. You need a non-rebreather mask...and your regulator should be capable of 15 lpm.

I drink hot tea when I have a shadow, and it knocks it right out.

Guess the important thing here is to remember that not all things work the same for everyone. We're all different...and alot of times what seems to be a miracle treatment for one...is a flop to another. Be patient and give what meds you have a chance to work...some things will take a week or more to get in your system.

The narcotic meds are known to have little effect on CH. They also can cause rebound headaches.

Best of luck to you...stay in touch...let us know how you're doing.

Jean

Title: Re: New to CH and the site.
Post by Bob_Johnson on Sep 18^th, 2006, 7:27am

Educating yourself is a good way to help cope with the anxiety.

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf
====
The second title is a good starting place.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: New to CH and the site.
Post by TonyYZF on Sep 18^th, 2006, 8:45pm

WOW! Thanks to everyone for the great advise.

I will check out the info you sent Bob.

Actually I am not taking the meds. I try to keep that kind of stuff to a minimum and I told the Neuro that I would not request the scripts until I had to. He just noted the treatment plan in my record for the next time they get bad, especially since I travel so much with the Navy and move alot too. I don't want to have to start over with a new doc from square one every time I am away.

I have taken occasional over the counter stuff for the shadows to take the edge off when they are more annoying. Also I have tried drinking some caffeinated beverages which I didn't do much before. I am sure I will have to experiment a bit.

I will hold off on the Verapamil until next time. I understand it is a preventative and it takes time to build up, but if I get lucky and it doesn't come back for a long time, then all that time will be without one more daily med...hard on other systems.

Thanks again to everyone.

I will keep looking up if you will....

Tony

Title: Re: New to CH and the site.
Post by chopmyheadoff on Sep 19^th, 2006, 4:28am

errm have i missed something - what makes everyone think this guy is not chronic ??

Title: Re: New to CH and the site.
Post by TonyYZF on Sep 19^th, 2006, 9:43pm

Had some different shadows today.
(along with the same ones I have been having)

Very intense jabs of pain in the vicinity of my temple, but short lived. Will wait and see if there is any significance.

Could be related to an eye exam this morning. I suspect the meds used to dialate my pupils could potentially have an affect on the blood vessels in the area or in this case maybe a rebound effect since the new sensations were this evening well after the exam.

Anyone have any experiences with eye exam and CH issues?

PW wishes.
Tony

Title: Re: New to CH and the site.
Post by tanner on Sep 19^th, 2006, 11:22pm

Tony, Welcome Aboard ;)

I would have to agree that so far you don't appear to be Chronic, but note the word appear. There seem to be less hard and fast rules regarding this blessing that unites so many of the Unusual Candidates that I would not make or accept a blanket statement re: your personal status without doing all of the homework myself and than still leaning heavily at times on this group of EXPERTS.

I hope that in your case that your episode is winding down and that will allow you a lot of time to self educate.

You seem to be off to a good start (Doc) wise and an even better start finding your way here so quickly!

I hope and pray that the beast leaves you very soon, and I would like to thank you for your service to our country!!!

......Tim

Title: Re: New to CH and the site.
Post by georgej on Sep 20^th, 2006, 12:15am

on 09/19/06 at 21:43:06, TonyYZF wrote:

Can't speak to the eye examination, but the icepick jabs to the temple are pretty common. Wham and gone, right? Most of us get them from time to time when we're in cycle. They can occur on their own, or they can signal the ending of a hit--painful jabs at the temple that come before the pain subsides. Perhaps you've noticed that already when you were getting hit hard.

Chop, biggest reason I said that Tony doesn't look like a chronic was that he tells us his present cycle started in late July, and it appears to be tapering off now. So it's somewhere between 6 and 8 weeks--a pretty typical episodic cycle.

Tony, sorry to talk about you as if you weren't here. LOL. What usually happens to episodics is that you ramp up quickly in a cycle, hit a couple weeks to a month where the intensity is high, and then taper down slowly. It sounds as if that's what's happening to you. I'm stickin' with the notion that you're an episodic. The odds are that you are episodic--eighty percent of us are.

Best wishes,

George

Title: Re: New to CH and the site.
Post by TonyYZF on Sep 20^th, 2006, 10:21pm

Chop, George and Tanner,

I pretty much came to the conclusion that the shadows I am having now do not specifically indicate that I could end up cronic but that they also do not rule it out either.

I was releived though to hear that they may be typical to episodic.

While not conclusive, at least I am left hoping for the best(definitely a relative statement) but I am prepared as well as I can be for the worst too.

Understanding that about 10% of CH sufferers are chronic and that it is more likely that the older the age of onset increases the likelyhood of starting or ending up chronic, I figure I still got at least a 70% chance of going episodic. Much better odds than Vegas...LOL

Bottom line: Will have to wait and see.
And maybe more importantly, I am starting to accept the situation and continuing to educate myself.

Still stressing a bit, but I expect that to fade with time.

Waiting to see if I will still be going to the Middle East. The Overseas screening personnel are hem hawing around and haven't given me an answer as quickly as I expected. Hopefully will know something tomorrow either way so I can plan appropriately.

Thanks for the inputs...I am learning alot everyday.

Dont forget...if you are not crashing it, you aren't riding it fast enough.
Tony