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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Introduction
        
(Message started by: 1968eric on Apr 24^th, 2005, 4:15am)

Title: Introduction
Post by 1968eric on Apr 24^th, 2005, 4:15am

Hello All,

I have not been officially diagnosed with CH yet, but my doc is headed in that direction next. Based on my symtoms and what research I've done, I'm pretty certain in my mind its CH. He seems to be a good guy and very knowledgeable - he's a orofacial pain specialist. (I'm pretty sure that's his title or whatever.) The only problem is it's usually around 3 - 4 weeks between appointments, and that with the fact he's trying to rule other things out is a little frustrating.

I've described all my symtoms, which I'll lay out here too later, but he seems obsessed with thinking they might be caused by stress and pressing my tongue against the roof of my mouth - so he put me on a small nightly dose of Elavil which really only adds insult to the HAs when they wake me up every night because while the pain makes me very much unable to sleep and restless, I still have the groggy feeling from the Elavil which only makes me wish I could get the HA over with and get back to bed even more.

The last visit (my second not counting phone calls with him) he decided to try ruling out chronic paroxysmal hemicrania (CPH) by prescibing Indomethecin in escalating dosages. I haven't hit max dose yet, but so far its not touching the headaches.

During this last visit he also said the next step would be testing for CH by putting me on Verapamil. By this last appointment, I had already begun researching on my own, and found it strange that he wanted to look at CPH which affects mostly women and the HAs are very short and occur more like 10 - 20x per day, where mine are almost always only 1 per day and last about 90 min.

I also found it odd that he wanted to try having me breath pure oxygen for 15 minutes during the appt being I wasn't experiencing a headache at the time - tho it did relieve the mild soreness from the previous nights episode - but when I all but begged him to prescribe taking oxygen home with me, he said it wasn't practical, and that its too dangerous, and that he didn't know where I could get it. So, I'm going to find another doc that'll prescribe it hopefully.

Anyway, I have some questions for you all, but will lay out what I'm experiencing first.

- The headaches always wake me up about 1 hour after falling asleep. They last 90 minutes or so. The pain is always on the right side, to the right of my nose, behind my right eye, temple area, above and behind my ear, and at the top of the right side of my neck.

- My right eye gets very bloodshot and a little teary. I can't tell for sure if my eyelid is droopy, but it definately feels droopy - kind of like your face feels after a trip to the dentist when the novacaine is wearing off.

- I don't ever have the runny nose, but during the HA my right nostril feels constricted by what feels like some very thick and sticky goop - which I'm occasionally able to blow some out, the rest runs down the back of my throat. Sorry to be gross. It always feels like it'll relieve the pain some if I can clear the passage, but it never helps.

- On the kip scale, I'd put the pain at a high 7 or low 8. I've never felt compelled to bang my head against the wall, but I do get out of bed wander around the house usually clutching and rubbing at my head, maybe subconsciously thinking I can rub the pain out.

- These HAs began around 2 months ago. For most of that I didn't miss a night - just lately I get a HA-free night now and then. But I've also just recently had my first daytime HA, aside from the ones I always get after a hard run in the morning. I'm military so part of my "job" is exercise. If I go on a long run (3-4 miles) or really push it on a shorter one (1.5 miles) I can count on one of these headaches about an hour and half after I finish my run that last for the usual 90 minutes or so.

I've had a CAT scan which was negative - no tumors, problems with my sinuses, etc. I can't think of anything else so on to my questions.

Questions:

CH is new to me the last couple months. I feel fortunate to only be hitting 7 - 8 on the kip/pain scale. Should I expect them to get worse? Is it possible they will? Can any of you with the more painful headaches remember if they were a little milder when you first started getting them?

Has anyone else experienced the headaches after exercise?

What are the chances oxygen will help? It looks like it will be a pain in the butt to get some - you'd think I was asking my doc for medical marijuana or something. I wonder what the chances are it'll be worth the effort?

What are the odds that the Verapamil will work? I've noticed from reading some other posts it doesn't work for everyone.

This post has probably been too long and tedious. Many thanks to anyone who waded through the entire thing. I'm very pleased to have found this site. Any answers to any of my questions will be greatly appreciated as will any other insights or opinions you care to offer.

-Eric

Title: Re: Introduction
Post by nani on Apr 24^th, 2005, 8:44am

Hi Eric, welcome and sorry you are here. While you are waiting for an "official" diagnosis from this dr, try and make an appointment with a neurologist. They should be more informed about CH. In the meantime it wouldn't hurt to keep a headache diary. Include times, duration, severity and possible triggers. It's usually a good idea to rule out CPH, but if the indomethacin isn't working...you probably don't have it. It's 98% effective for CPH.
Your best weapon is informing yourself. Read everything you can here. Pay special attention to the oxygen info link on the left and the threads on the meds board.
I will answer your questions to the best of my ability. Disclaimer: I'm not a dr, just a CH sufferer.

1. There is no way to predict how CH will be for you. Every one of us is different.
2.Some experience HA after excerize, and for some, strenuous excerize will abort a HA.
3.Chances are very good that oxygen will help. You'll need 100% oxygen at 10 - 15 lpm and a non rebreather mask.
4. Verapamil works for many, but not all, of us. It's used as a preventative. Typically, one or more prevents are used during a cycle. Abortives, like oxygen and the triptan drugs (like Imitrex) are used as needed for hits.

Coming here is one of the best things you can do. We have tons of info and support to give you. Keep us posted, OK?

Good luck and pain free wishes to you, nani

Title: Re: Introduction
Post by LeLimey on Apr 24^th, 2005, 11:28am

Lots of good advice there from Nani Eric, don't think I can top that in any way! I just wanted to welcome you to the site as well. one of the best things for me wasn't so much the knowledge about the meds which is fantastic but knowing I wasn't alone. Having this bunch here has helped me through some really black days and I guarantee we can help you through it too!
Let us know how you are getting on ok? Its one of the conditions of joining up! ;)
All the best
Helen

Title: Re: Introduction
Post by maffumatt on Apr 24^th, 2005, 12:43pm

Welcome to your new home. Here is something to try. Buy a sixpack of beer and see if you can drink them all. Its a good test. When in cycle I get hit before I finish the first one. Sorry your here but you found a good place with alot of great people. Read and learn, and we are all here for ya.
Matt

Title: Re: Introduction
Post by nani on Apr 24^th, 2005, 12:45pm

on 04/24/05 at 12:43:45, maffumatt wrote:

:o Ummm...not something I'd suggest. :-/
Alcohol is a trigger for many (but not all) of us. Why trigger a HA on purpose?

Title: Re: Introduction
Post by eyes_afire on Apr 24^th, 2005, 3:09pm

Hi Eric,

Actually, I think it's smart of your doc to try the Indomethacin first. It will almost certainly rule in or out CPH plus in the rare chance that it may help, it would have been worth it since the CH preventatives carry more side-effects

I think it was dumb of your doc to rule out home oxygen. He's scared of liability issues and lawyers ::).

My answers:

Quote:

Should I expect them to get worse?

Yes.

Quote:

Is it possible they will?

Yes.

Quote:

Can any of you with the more painful headaches remember if they were a little milder when you first started getting them?

Yes.

Quote:

Has anyone else experienced the headaches after exercise?

Yes, usually 90 min after cardiovascular workout.

Quote:

What are the chances oxygen will help?

Pretty good.

Quote:

I wonder what the chances are it'll be worth the effort?

Depends, but it's worth the try.

Quote:

What are the odds that the Verapamil will work? I've noticed from reading some other posts it doesn't work for everyone.

Better odds than most other preventative meds.

Quote:

This post has probably been too long and tedious.

Nope, it's an excellent post.

--- Steve

Title: Re: Introduction
Post by 1968eric on Apr 24^th, 2005, 5:02pm

You guys are great. Thanks for the warm welcome and the replys.

BTW, should I take further questions to the other board?

Title: Re: Introduction
Post by nani on Apr 24^th, 2005, 5:30pm

on 04/24/05 at 17:02:42, 1968eric wrote:

BTW, should I take further questions to the other board?

That's probably the quickest way to get them answered.

Title: Re: Introduction
Post by kimmeesue on Apr 24^th, 2005, 6:10pm

It's always good to arm yourseld with good information, BUT you cannot second guess cluster headaches.
There is a reason we call them by various names..the beast, the demon, etc....they are not a friendly, curteous, respectful guest. They are rude, obnoxious, and unpredictable quite often. Expect the worst and hope for the best.
Painfree wishes,
Kim

Title: Re: Introduction
Post by Kris_in_SJ on Apr 24^th, 2005, 8:23pm

Hi Eric,

First, welcome.

Second, the symptoms you describe seem pretty classic in terms of episodic cluster HA syndrome.

Third, despite the fact your doc seems like a nice guy, the fact that he won't prescribe oxygen (a KNOWN abortive) and calls it dangerous, tells me you are in the wrong hands. Just the fact that your shadow pain was relieved by O2 tells me you are probably a clusterhead.

I would run, not walk, to the nearest neurologist. You need a preventative like Verapamil, maybe a Prednisone taper, and definitely an abortive like O2 or Imitrex injects. I have a couple of great articles I'd be happy to send you. If you'd like them, just PM me your email addy and they're on the way. Hang in there and get busy advocating for yourself.

Hugs,

Kris

Title: Re: Introduction
Post by RichardN on Apr 25^th, 2005, 8:25am

Welcome Eric

You mentioned that your headaches started about two months ago . . . . do you recall a head injury arround that time? I am one of the 16-20% of CH sufferers whose headaches seem to start as the result of head trauma (1/01) . . . . didn't find this site til' 2/02 . . . and yes, they got MUCH worse in that year of tests, mis-diagnosis and non-working meds. . . . was having 6-8 per day when I got here and found a "name-for-the-pain".

Used at the early onset of an attack, I can kill the beast in 5-10 minutes with 02 (day hits) . . . works for about 70% of us.

You have much reading to do and will have many more questions . . . here you will find people who truly know your pain.

Be Safe, PFDANs

Richard

Title: Re: Introduction
Post by 1968eric on Apr 25^th, 2005, 6:21pm

Good news today - somewhat. I started getting another HA this morning after my run, went to urgent care and got on oxygen for about 15 min and it stopped the HA before it ramped all the way up. I called my doc and he's handing me off to a neurologist who I should see this week. I was amazed that the tech I talked to gave me no hassle whatsoever and just took me to an exam room and started the oxygen just by me asking.

Now I just need to fight the battle to get oxygen at home. This will hopefully be easier with the neuro.

I haven't had a head trauma that I can remember for about 15 years in answer to the above question.

Title: Re: Introduction
Post by godsjoy777 on Apr 26^th, 2005, 10:48pm

Welcome Eric,
I'd say O2 is the best thing since sliced bread. I used to be on Verapamil but even though it eased the Clusters it lengthened my cycle. I'm quite sure of it. Even some of the best Drs will tell you that the very medicines that help actually lengthen the cycle......soooooooo I'm just sucking O2 in hopes it will make the cycle go back down. My cycle used to be only a few weeks....maybe 6 weeks to 3 months.....Then it went to 6 months and then 7 months after using Verapamil and other meds like the triptans.....Just a warning....If O2 works for you, don't be necessarily quick to take everything the Neuro wants to prescribe you. I wish I hadn't.
O2 and water, water, water.
Blessings,
Karen

Title: Re: Introduction
Post by mcf69 on Apr 28^th, 2005, 12:29am

Quote:

The headaches always wake me up about 1 hour after falling asleep. They last 90 minutes or so. The pain is always on the right side, to the right of my nose, behind my right eye, temple area, above and behind my ear, and at the top of the right side of my neck.

Eric- those are some classic cluster signs there, waking up with them and location of pain. Do some research on the trigeminal nerve, you'll find that it runs just about to the places you've described. Get a second opinion from a neuro- they're usually more familiar and may be able to cut some of the BS with all the other stuff. Welcome to the board, best of luck to you.

Title: Re: Introduction
Post by TxBasslady on Apr 28^th, 2005, 2:30am

Welcome to the board.

Good thing your doc is handing you over to a neuro. Maybe that way...you'll get 02. ;;D

I keep a diary...it really helps to see what has gone on. It's also a great tool for my doc.

Don't forget to tell your new doc about the experience with the 02. I would think he/she would rather you have 02 than the triptans.

Good luck....let us know how things are going.

PF vibes,

Jean