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Topic: Newbie.. Looking for support (Read 209 times) |
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BozoWise
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Newbie.. Looking for support
« on: Oct 26th, 2006, 7:27pm » |
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Try not to ramble on much since it is my first post. I'm 28m, divorced but currently married to my job  I spend about 150 days out of the year traveling and working directly with military and federal government. I have recently moved to Lubbock TX, where I had attended TTU.
Currently I am self-diagnosed and seeking a doctor willing to look into CH. I am also hoping to maybe find some people local to the area that could provide me with some direction towards doctors and treatments.
I have spent every free min. of my time looking over the site and researching CH.
A brief look into my history:
I had an accident this 4th of July where as I struck the side of my head and ruptured my eardrum falling off the side of a boat.
My ear seemed to heal fine and my weekly air-flights were only mildly uncomfortable lacking the ability to equalize pressure in my right ear. About a month ago I had a 3 day period at home wereas I was having the classic symptoms of CH. At that time I just assumed it was my ear problems. I would get complete congestion of my right sinus cavity, my right eye would turn completly bloodshot as if I had scratched over the surface of my eye, it would constently water and felt as if it was going to pop. The pain was specifically located above and behind my right eye, extending down to front of my right ear.
I tried to battle them with OTC pain medications to the point of near maximum dosages with no effect on pain. I was very restless and unable to sit still. I did find mild relief in the shower letting the water beat down on my head (hot and cold both worked well) I also found that going out on a active road march seemed to get my "mind" off the attacks.
After the 3 days of episodes. I per day lasting about 2-3hrs each. I boarded a plane to DC. I made it there and almost to the night with no pain. That night I had another identical episode and the same continued for 5 days all about 7-9pm. The one night at 7 was after I drank 3 beers and was far the worst episode to date.
So long story short the pains have no grown to include running down the right side of my neck. And after the return from DC I was getting scared of some life threating issue in my head. My GP overlooked just about everything and didn't spend much time even talking with me a put me on a coarse of antibiotics and steriods because I had a massive sinus infection, this after doing nothing more then looking in my ear and nose.
As you well know the medicines did nothing. I was smart enough on my own to know that by the look of my mucas I had no infection. I have normal breathing before and after the episodes. But during I get almost complete blockage on the right side.
The ENT earlier this week ran cat scans and looked into my ear simply stating that my ear had healed perfectly since the rupture and the CT was normal. I told him that my pains were not normal and I knew something else was going on. He wanted to run histamine tests as he felt this could be brought on by alergies. I declined anymore treatment there and started to look more into the problems myself. I can say that the prescription they gave me for 20mg prednisone twice daily might be helping even if they gave it too me for reasons other then CH.
I thank the lord that my dear mother spent nearly 3 days searching for explanations as to what was going on with me. She slept less then I have just worrying about me. I was hating myself for the pains that I was bringing on my family more then the pains I had personally.
She sent me an email stating no more then could you be having Cluster Headaches. I did a quick google search and clicked on symptoms and was stunned how they all seemed to be written in my own words of pain.
I am now printing and researching more and more daily as I have an appt with an ENT here in town that hopefully will have some insight or regard in directing me to someone that can help.
I am happy to say that last night was my first day that I have not had an episode and I now feel so blessed to only have one per day even if it does last 2-3hrs. I hate to admit how I felt so unlucky to have this until I read of others who deal with the same pains multiple times a day.
Hopefully between the support of my family and you guys here I will be able to deal with this. THANKS TO ALL AT THIS SIGHT AND I NOW HAVE A LARGER GROUP OF PEOPLE TO THANK THE LORD FOR EVERYDAY.
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| « Last Edit: Oct 26th, 2006, 7:53pm by BozoWise » |
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TxBasslady
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Re: Newbie.. Looking for support
« Reply #1 on: Oct 26th, 2006, 8:40pm » |
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Hi!
Welcome to the board.
I know you said you've been reading here...Have you taken the Cluster Quiz?
You might want to check into finding a neuro in your area that's versed on CH. Or, if you have a family doc, he/she might help. You probably should have an MRI, considering you had the recent head injury. Most of us with CH have had one, just to be sure there were no other problems.
Prednisone is prescribed quite often to break a CH cycle. It's possible that what of it you're taking may help to hold the pain at bay.
I would encourage you to seek a correct diagnosis in order to take advantage of the meds available today for CH. Not everyone is the same...so what works for one, may/may not work for another.
If you do have CH, ask your doc for 02. You'll need a regulator that disperses 12-15 lpm, and a non rebreather mask. 02 (for some) will abort a CH in a few minutes, as apposed to being in pain for a couple hours.
Check out the Clustermasx....it was designed by a Clusterhead in the UK. It's well worth the $$...and puts the non rebreather mask to shame. 
Print out the meds info, and keep in mind that narcotic type meds do nothing for CH. If anything, they make it worse. Read up on Melatonin, and Kudzu. You'll find success stories here from the folks who've tried them.
Bless your Mom....she sounds like she'll be a great supporter to you.
Feel free to ask any questions you may have. Stay around and let us know how things work out with the doc.
Someone usually here 24/7....
Best wishes to you..
Jean
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thebbz
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Re: Newbie.. Looking for support
« Reply #2 on: Oct 26th, 2006, 9:13pm » |
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Welcome and what Jean said 
hang in there, and all the best
jb
You should get a proper diagnosis, but you already know that.
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BozoWise
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Re: Newbie.. Looking for support
« Reply #3 on: Oct 26th, 2006, 9:16pm » |
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Thanks for the replies. I do hope to find a doctor here that has some expreience with CH and will be able to give some definitive proof towards or against my revelations.
I have family history of migraines but my symptoms do not fall into that catagory. I have taken the quiz and from reading seem to be right inline with CH symptoms.
I am currently working on build a deatiled 3 ring binder of headache and CH research both with treatments, medications, etc. etc. to take with me to the doctors.
I am also keeping a headache diary and have always kept a complete medical history along with doctors notes and medications. Because of my travels and job I am almost required to have that log.
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| « Last Edit: Oct 26th, 2006, 9:22pm by BozoWise » |
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thebbz
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Re: Newbie.. Looking for support
« Reply #4 on: Oct 26th, 2006, 9:23pm » |
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Keep checking back I am looking for the neurologist list here somewhere. If not its on the OUCH website. Sure will help you finding a decent doc.
jb
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E-Double
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Re: Newbie.. Looking for support
« Reply #5 on: Oct 26th, 2006, 9:44pm » |
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This is a great resource to know like the back of your hand...print it out and give it to the doc
[url]
http://www.brightok.net/~mnjday/chtherapy.pdf [/url]
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Not all treatments work for everyone and being that you have no meds @ this point nor have you been officially diagnosed, there are a few things that might be able to give you some relief non-medicinally.
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 8-10 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Some tricks that I used to use and sometimes still do are:
*Wrapping a bandana tightly around my skull (be careful)
*Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering
it.
*Going from Steam to Frigid shower.
*Standing infront of A/C
*Icepacks or frozen veggies on the back of the neck or eye
*Tons of STRONG coffee.
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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BB
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Re: Newbie.. Looking for support
« Reply #6 on: Oct 26th, 2006, 9:52pm » |
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Hello and welcome,
Make sure you get an MRI, as your CH started after head injury its better to check to make sure.
Ditto to what Jean said otherwise.
Take care and let us know how you go.
Annette
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