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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hi! Jonas here, new member
        
(Message started by: jonas3333 on Jul 17^th, 2005, 4:10am)

Title: Hi! Jonas here, new member
Post by jonas3333 on Jul 17^th, 2005, 4:10am

Well here I am at this message board..and once again I offer praises to the great internet for allowing me to not feel so alone. The web certainly has that "bringing similar people together thing" going for it, with all the crap it's got as well.

Just got over a mild one... After reading around here, I'm realizing two things... Yes, I'm more certain than ever they are clusters and omg, I could have it worse.

Always one eye - nearly always the right - Haven't had a bout with them in over a year until two weeks ago. Now, life hurts.
Yes, I'm a smoker and Yes, they began in my teens, BEFORE i began smoking. Cannot smoke while dealing.
I'm not diagnosed and not completely convinced its'/ they aren't sinus related due to the one-sided stuffiness and the apparant,occasional relief/abating I think I get from OTC Sinus meds..I hate taking medication for anything, yet there are now 4 ravaged packs of Sudafed liquicaps on my bathroom counter, and I've experienced some sort of small amount of drainage tonight which I believe attributed to my more milder attack. It's been quite humid in Michigan lately.
However, I've looked extensively into sinus headache sites and don't find the symptoms to match although I wish they would...especially after reading this board..
I really don't want to take meds and cringe at the thought of injections and oxygen!
I'm nervous about the fact that there is less rhyme and reason for them than there used to be..I used to be able to set a clock to one or (rarely)two a day.. and while I can still set a clock to at least one.. there's not usually just one anymore and the rare factor is now up to 4....with the occasional wakeup call of pain.
I guess a doctor is in order, but until reading the web this year, didn't even think they could be diagnosed...I know for certain they couldn't be 17 years ago...tried.
Well that's all for now. Feel free to respond with thoughts and what-have-you.

Title: Re: Hi! Jonas here, new member
Post by jonas3333 on Jul 17^th, 2005, 4:34am

After reading the recent post by Sourdough Stomper, I feel it necessary to state that I DO lay down to deal through each episode..walking is unthinkable..but generally so is laying still.. I've had plenty of times where I've rocked, beat myself, lay on the bed with my torso hanging off the bed and my head near/on the floor and done a considerable amount of writhing. Other times I merely lie there and whimper/breath, while pressing rubbing and trying to find that magical spot that will make it go away....I am a believer in breathing technique! Could the simple fact that I don't walk around mean I don't suffer from this abominable condition??? We all deal with pain differently right?

Title: Re: Hi! Jonas here, new member
Post by don on Jul 17^th, 2005, 7:36am

Sounds like meegraines.

Title: Re: Hi! Jonas here, new member
Post by BobG on Jul 17^th, 2005, 7:43am

Hello Jonas, sorry to hear you are hurting.

on 07/17/05 at 04:10:10, jonas3333 wrote:

Always one eye - nearly always the right - Nearly always? Does it come on the left very often? Is there pain any where else, nose, jaw, temple?

Yes, I'm a smoker and Yes, they began in my teens, BEFORE i began smoking. Don't worry about smoking. It has nothing to do with cluster headaches.

I'm not diagnosed and not completely convinced its'/ they aren't sinus related due to the one-sided stuffiness and the apparant,occasional relief/abating I think I get from OTC Sinus meds.. You MUST get a diagnoses. I'm not convinced you suffer clusters. The clue is the use of OTC sinus meds. They are not going to help with cluster pain.

I really don't want to take meds and cringe at the thought of injections and oxygen! Nobody wants/likes the injections or taking meds. But oxygen? It's the safest way to relief. You breath it all day, every day of your life. It won't hurt you. Click the 'oxygen info' button on the left side of your screen

I guess a doctor is in order, but until reading the web this year, didn't even think they could be diagnosed...Take the 'cluster quiz', button is on the left. Yes, they can and are diagonsed regularly

I know for certain they couldn't be 17 years ago...tried. Hmmmm....cluster headaches have been around for forever. I was diagnosed in 1985. You just have to find a knowledgeable doctor, or educate the one you have.

I feel it necessary to state that I DO lay down to deal through each episode..walking is unthinkable That is very unusual. Very, very unusual. But it, by itself, doesn't mean you do not get clusters.

lay on the bed with my torso hanging off the bed and my head near/on the floor. That is unheard of. I have never heard of a clusterhead that would dare put his/her head lower than the body during an attack. That would rule out cluster headaches. But that is just my opinion and I'm not a doctor.

We all deal with pain differently right? Yes we do. If lying down relieves your pain then go for it, Cluster headaches or not.
.

Please see a doctor. You may have to go through an eye doc, dentist and an ear/nose/throat doc and then a neurologist to get a diagnoses but please do so soon.

Title: Re: Hi! Jonas here, new member
Post by burnt-toast on Jul 17^th, 2005, 11:23am

Jonas,

You owe it to yourself and your family to get a proper diagnosis. You may be suffering from migranes or clusters but then again any number of conditions that can manifest themselves as recurring headaches.

I suggest getting to a headache specialist and going through the standard battery of tests needed to help diagnose your specific condition.

Best wishes on your journey - I know someone here has posted a good list of docs. on several occasions - look around and see that may be helpful in finding a good specialist.

Tom

Title: Re: Hi! Jonas here, new member
Post by jonas3333 on Jul 17^th, 2005, 5:18pm

Hi again. Thanks for all the response! This is a caring group of folks. Apparantly the doctor thing i hate has to happen.
Special thanks to Bob G. for the thourough reply.I will try to answer your questions as best I can.

1. Yes - it's nearly always one eye and it has been my right one predominately since the beginning of them. It's not just the eye - it's like everyone describes, I usually get some teeth action and temple fun - I would say the upper half of the right side of my face with hearty focus behind that eye.

2. the sinus meds don't work very well usually. I take them because I'm convinced they did something a few times and no headache relief will do as by the time a tylenol gets into my system the headache is usually on the way out already. I believe they open up my breathing cavities better due to the pseudoehpedrine and the increased breathing(oxygen) helps to stave them off... for a while. But watch out when they wear off!! It can be doubly bad.

3. I did take the cluster quiz and answered yes to all the pertinent questions. The last question regarding walking,bashing,screaming,thrashing, I answered yes to as I have obviously had plenty of action and thrashing including bashing. I'm not really a screamer although I have cried out and frequently talk to myself through the moaning whines. I think one reason I don't walk is I have rather bad vision and wear glasses which are the first thing to go when the headache begins to get ugly - walking without sight isn't fun as I'm sure many out there will agree - the other reason being I have to cease standing to deal.

4. The hanging upside-down from my bed is a very rare thing for me to do but was used as an example of the lengths I go to to find relief. No it didn't give me relief when I've done it so don't anyone try it! :) It stems from my thoughts that they might be sinus related and the thought of maybe rushing my head with blood to "attack" the headache back. Sometimes I get a little sadistic like that while in the heaviest throngs.

5. I have serious doubts they are migraines. For one, they last about 45 minutes from the beginning to the sweet sweet end. And then there is the time thing.

I do plan to find a doctor and then I guess a neurologist, but I know myself and haven't done this yet though I've had 6 years of good insurance. I just want them to go away again for another year or so. :)
Don't get me wrong about my condition - it's clearly not nearly as severe as many I've read about... I'm suddenly happy its episodic and not chronic..I don't think I'm strong enough to deal with the chronic aspect of no relief; just these two weeks have weakened me and made me housebound at times. They usually last about 4 altogether.

- edited to add spacing between answers for clarity.

Title: Re: Hi! Jonas here, new member
Post by Sandy_C on Jul 18^th, 2005, 8:42pm

[quote author=jonas3333 link=board=knowya;num=1121587810;start=0#0 date=07/17/05 at 04:10:10]
I really don't want to take meds and cringe at the thought of injections and oxygen!

I'm with you on this one. I don't want to take heavy meds either, nor injections. But, oxygen? It does work for many people on this board. also, read the Kudzu threads on these boards under medications. Has helped many.

Foremost - GET THEE TO A DOCTOR FOR DIAGNOSIS!. I'm sorry you are here, but if you do have clusters, you've come to the right place.

Sandy

Title: Re: Hi! Jonas here, new member
Post by Kris_in_SJ on Jul 18^th, 2005, 8:52pm

Ditto to Sandy. Get thee to a doctor pronto!

I don't know where in Michigan you are, but I'm also there. The weather has been the most horrible I can ever remember, and I live on the shores of Lake Michigan. However, the weather seems to be horrible everywhere these days.

Hopefully, you've read the medical info to the left. Start a headache diary. Write in it the times of day, length of time the HA lasts, severity, what meds/alternatives you try, what works and what doesn't. Take your diary with you to the doc.

Whether or not you want to take meds or oxygen is alot less important than whether or not relief is vital to your mental and physical well-being!

PF Wishes and Many Hugs,

kris