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not too sure what to think (Read 3972 times)
wrngwae
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not too sure what to think
Aug 13th, 2009 at 1:08pm
 
hi there all i just signed up about 5 min ago. but, i have read some info here the last few days. i have a doctors appt for monday to see what is going on. i cannot self diagnose my pain but i tell ya its like someone pulls my left eyeball out of its socket and puts it in a vise the pain is unreal, it runs all the way down to my neck into my shoulder. i just had an episode about an hour ago and thought enough was enough,,,im joining. im new to this headache i have had others b4 but not like this i have been having these for about 2 weeks starting off not real intense but turning into damn intense sunday nite. as i squirm on the couch crying relentless and begging for it to stop. im a 36 yr old strong willed husband of 14 yrs and my poor wive sits there and trying to comfort me. with no good results.  it is very humbling. so in short im glad i found you all here but i would have liked to have met you under different conditions. but like i said monday is my appt and im not too sure what to expect. but i have a mental log as the days and times so i hope this helps my doctor. dont worry about me for getting these last weeks have been burned ito my brain for ever. thank you for the ears.
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Re: not too sure what to think
Reply #1 - Aug 13th, 2009 at 1:54pm
 
Before we can be of much help many of us will want to know what the doc says. Hope you have someone with headache experience for many, many folks find the quality of care with this problem to be lacking. So, please get back with both the doc's diagnosis AND what he has prescribed.

In the meantime, might like to read this overview of CH and see if it rings any bells....
=====

 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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wrngwae
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Re: not too sure what to think
Reply #2 - Aug 13th, 2009 at 2:49pm
 
you bet i will fill ya all in for sure when i see the doctor. she is also does homeopathic medicine and acupuncture,,,,,the wife says. not to sure what to think about that but it does say she (my doc) has an open mind so hopefully my plea will not fall on deaf ears!!!!!!!!!!! and thanks for the reply, i have read several of the stickys and over views here along with some google searches i think im at the right place.
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Re: not too sure what to think
Reply #3 - Aug 13th, 2009 at 9:43pm
 
well all like i said not too sure but i just got done about 10 min ago with another, it is not within my normal time frame but i had a beer in the garage with a friend working on the old tractor and about an hour later i was telling him it was time for him to go i had to get in the house. i just made it befor i hit the couch in agony. i cant wait till monday!!!!! god bless my wife for taking care of me. the only thing i got is hot and i mean hot rags. that is the only thing i got here that helps. heat anf lots of it. cold it the worst it even hurts like hell to switch the hot rags around. so for now im gonna try and eat dinner and get some sleep i hope. but i can never tell. my god how on earth have you people delt with this for so long. i just started and im ready throw in the towel and say you win stop punching me in the head now. what ever i did to someone or something im sorry. Cry
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Re: not too sure what to think
Reply #4 - Aug 13th, 2009 at 9:48pm
 
Alcohol is a trigger for CH attacks, the beer you had may have triggered another attack for you.

I can't drink any alcohol not even 1/4 cup of any type, if I do, I'm running, pacing & rocking with pain.

I hope it goes well at the doc's and that it's nothing too serious.  Still hope it's not the beast (CH) I wouldn't wish this on my worst enemy!!

Anywhoo nice to meet you and GOOD LUCK!

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Re: not too sure what to think
Reply #5 - Aug 14th, 2009 at 5:59am
 
Hello and sorry your hear but no better place to be on the web.
Please keep us updated on what your doc goes with for diagnosis and treatment.  It took me years of wrong diagnosis before I found a doc who sent me to a neuro who finally diagnosed me.
I find alcohol has different effects on me sometimes a beer will trigger sometimes it wont. I think it depends where I am at in my cycle and I only try a beer at home with the o2 close by. I get daily nightime hits anyways so sometimes I will have a beer to attempt to trigger one then use the o2 to abort and then I will sometimes miss my nightime one completely. 
Heat was my best asset before o2 and would spend my nights in a hot shower banging my head against the tile. Sometimes still do when the o2 does not abort the attack. Learn what works for you and do whatever it takes to ease this pain. This site has been the best support for me and so much useful info is found on it.
Keep on keeping on and keep us posted,
Brian
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...but then you make me crawl..and I cant be holding on to what you got...when all you got is hurt...
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wrngwae
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Re: not too sure what to think
Reply #6 - Aug 14th, 2009 at 7:35am
 
thanks for all the support. yea i knew alcohol was a trigger but i had a headache at work yesterday about 10am. they are either 10am or 11pm not to sure why. but since i had the one at work and didnt have a drop since last weekend i figured hell if im still gonna get them then im gonna have a cold one,,,,,,,,,lesson learned. its not even remotly worth it. things have been a little stressfull at work too, and i read that is no good either. we have this big inspection on monday, that is why my appt is on monday so im here for the ass chewin, lol. well lets see what today brings. better get to work. oh yea in case any one cares i live in northwest indiana. i havent yet figured out how to update my profile. Cheesy
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« Last Edit: Aug 14th, 2009 at 10:18am by wrngwae »  

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Re: not too sure what to think
Reply #7 - Aug 14th, 2009 at 10:22am
 
well it is about 20 after 9am here and i feel it coming on. i hate this. it is really affecting my job now. i just got some instructions from my boss and i gotta get to work but its coming and there is nothing i can do about it. when it comes im down for the count. i cannot function at all. OK than it getting hard to type so i will be back later. Angry
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Re: not too sure what to think
Reply #8 - Aug 14th, 2009 at 3:06pm
 
Welcome aboard!  Sorry you are here.

For temporary relief you might try an energy drink such as Red Bull or Monster.  Slam it down as fast as you can possibly drink it at the first sign of and attack.  I can often abort a hit in 5-6 mins, or at least knock it back to a tolerable level.

Read, read, read!  There is a world of info available here that you will find no where else, including your Dr. unless she is a headache specialist who works with clusterheads.  Especially, I would direct you to the "oxygen info" button in yellow to the left of your screen.  Oxygen has been a lifesaver for many of us, ubt it must be used properly for maximum effect.  Otherwise you will have less than satisfactory results.  Along with that I would strongly recommend that O2ptimask from the CH.com store button on the left.  It was developed especially for us by Linde, the oxygen people, and is far superior to a standard non-rebreather mask.

Jerry
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wrngwae
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Re: not too sure what to think
Reply #9 - Aug 18th, 2009 at 7:44am
 
thanks all for the support. so i got some news from my family doc,,,,,,,,yep i got it. no fun. while i was in the waiting room i could feel one trying to come on (if that makes since) and i got in sat down and was telling her what was going on. se was looking at me and said are you in pain now. i said yea a little but it will be worse soon. she ran out the room yelling for o2 and came running back in with a tank and told the nurse to put it on the highest setting. which was 15 im assuming 15lpm. been reading up on o2. and sure enough about 5 min in it was going away. nice. so to make a real long story short. im at the right place.so now i have a prescription for o2 adn for imatrex,,,,,we will se how it goes. now i have a question too. she wanted me to do the injectable imatrex but i asked if there was an alternative and that is when i got the nasal version....did i screw up or are they both affective? i cannot see myself injecting????? i got a needle thing ya know. but on the other hand if i pull out the needle and pass out before i inject there wont be any pain,,,lol just kidding im just kinda happy i got help and sad that i got to deal with this forever. so im filling in a calander to track my clusters to see what my schedule is. i hope it ends soon and dosent start back up for years but, we will see...............thank you all
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Re: not too sure what to think
Reply #10 - Aug 18th, 2009 at 8:00am
 
Wow...can't believe your luck! so to speak.   I Think because you had an attack at the drs. office, she got to see for sure that because the O2 worked for ya, it is definitely what it is.    Probably saved ya from a gazillion tests which take time..

   I think you did good with the meds.
I take O2, and Verapamil (prevent) and Zomig.
   I really like the Zomig, it stops the HA within minutes, and thanks to the folks here, I got me on some Verapamil, which has lessened the amount of attacks a LOT.,,,and they are not near as bad.
      So you may want to ask about a prevent.

Good luck to ya, and Welcome. Smiley         lorac
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Re: not too sure what to think
Reply #11 - Aug 18th, 2009 at 8:13am
 
Just an after thought....you really are lucky she knew what to do.....
   I once had an attack at a doctors office, and they called an AMBULANCE!   on the way to the hospital, they gave me O2, and by the time I got there it was over....so the ER doc thought I was just plain NUTS.!

   Told me to quit smoking, and sent me a big bill for the Ambulance.    Sad    jeepers!       lorac
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Re: not too sure what to think
Reply #12 - Aug 18th, 2009 at 9:47am
 
yea i am "lucky" i guess,,,,,,,,,but yea my family doc is the best,,,,she is very open minded, she does acupuncture, hypnosis, and homeopathic medicine too. i had an idea what was wrong with me due to here and the internet. but i never said a word she is the one who first said cluster headaches!!!!!!! so she knew what to do. i think im gonna send her a thank you card,,,,,,hell i think i may buy a lottery ticket too,,hahaha. but i got prescribed imitrex,is that good stuff???? well we ended up picking up sumatriptan its a generic i think??????? but the wife is getting my 02 tody since she is off. she asked if she should get the nose hose like the doc had and i told her to get a non rebreating mask with a minimum of 15 lpm regulator. and she said,,,,,,,,huh,,,,,,,,,so i made her write it down,,,lol. so we will see when i get off work today what santa has brought me. i gotta say to i hope my insurance covers a lot of this. my prescription i got last nite was 10$,,,,,i can live with that. thanks again all for the replys and support.
thanks a million
Tye
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Re: not too sure what to think
Reply #13 - Aug 18th, 2009 at 5:16pm
 
Wow Glad you got the help you needed and fast!  Count your blessings some here weren't so lucky.   I got lucky because I already knew the neuro I go to now and he knew immediately upon hearing my symptoms what the problem was.

Imitrex nasal is affective if you take it at the 1st sign of CH attack and before your nasal cavity clogs up, if you are clogged up on one side use the other.  The nasal takes longer to work and isn't quite as affective as a shot but as a back up it'll do.

After putting up with the pain so long you'd be surprised what you'd do to get rid of it and FAST, I have both the nasal and the shots and use both regularly.  Smiley

You may need to print some material out from there to show your boss, there is a link here somewhere "letter to employer and friends" can't remember where now...Will look and post link for you if someone else doesn't beat me to it  Cheesy

Eureka I found the link...
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« Last Edit: Aug 18th, 2009 at 5:22pm by JustNotRight »  

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Re: not too sure what to think
Reply #14 - Aug 18th, 2009 at 8:20pm
 
ya   Tye
   I hope your ins covers it too...mine don't, But I went to the O2 place, and asked about it, and they are sooooooo good. They give me the tanks for $10. per tank, and they usually charge insurance $50. So all good for me.

So if you need to, ask them for a reduced rate, It can't hurt.           good luck to ya              lorac
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Re: not too sure what to think
Reply #15 - Aug 18th, 2009 at 9:18pm
 
   When I could still take Imitrex, I prefered the injections as they work much better than the nasal type. Don't worry about being afraid of a needle. You can't even see the little bastard, the injector looks like a felt pen with a button on one end. You just press it against an arm or leg and push the button. Then just hold it there for ten seconds. I've done it in 45 foot seas with one hand on the wheel. Couple of minutes later the CH is gone. Damn as much as I hate needles, I miss those things. But after three open heart surgeries they won't let me have them anymore.
   O2 is a wonderful thing when you get a chance, buy a Optimask and a 25 LPM regulator. You'll have to haunt E-Bay for the regulator.
   Stick around we still need to talk about preventatives. Like Verapamil and some of the other drugs that can keep the beast from your door. Nothing beats not having a CH if you can manage the trick. And it sounds like your Doc is willing to work with you. Which is a rare thing you lucky  O2 sucker.
   Welcome to the maelstrom, let me know your mind.

Smiley
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Re: not too sure what to think
Reply #16 - Aug 19th, 2009 at 10:10am
 
well all thanks again,,,,,i cannot say it enough. so i got my 02 and my regulator goes up to 15lpm on an "e" tank i think is what it is called. it should last about 44 min according to the 02 tab to your left. so yesterday i had 2 come on and i used almost all my 02,,,,i have another tank thank god. so i have a question. do i use the imatrex with the 02 or just one at a time????? see i started out on 02 but it wasn't cutting it so i used the nasal spray with the 02 and about 10 min later it was all clear......... it that how i should do it?


and as far as the inject able,,,,, it works faster huh,,,,,may have to man up and try it. small little tiny itsy bitsy needle huh,,,,,,,we shall see,,,,,,......


sorry so all over the place i have a hard time having my hands keep up with my head. but i did have a congested left side nostril so i shot in the right. what if im all around congested,,,,,,,,,that could be real bad???? so i have these what you all call shadows all day it seems its kinda annoying. do i just deal with them or what? i know i should start on the 02 as soon as i feel one coming on but,,,,i feel them trying all day, do i wait till it hits? because that is what i did last night and that is why i think i had to do my 02 with the nasal spray? what do you all do?


man,,,,all thanks again. you have really helped out my learning curb.


oh yea my insurance seemed to cover all the 02 stuff,,,,so far,,,,,it is 50 bucks a month rental for the equipment so if need be i better start hunting down my own. preferably larger tanks since my first one is almost out after 2 ch's. pfd's and n's all.(HOPE I GOT THE RIGHT)


oh yea, one last thing i promise, thank you for the link to the letter for work and friends,,,,,,A++
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« Last Edit: Aug 19th, 2009 at 10:11am by wrngwae »  

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Re: not too sure what to think
Reply #17 - Aug 25th, 2009 at 9:12am
 
well all the 02 has been working wonders for me and i got a new prescription for imitrex injectables,,(gulp) and havent used one yet. lol. but today i go to the neurologist and see what they have to say. i am uncertain as to what tests they are going to want to do but, im game. i have also been arguing with the ins co since they say "you should only need 6 doses of imitrex per month" like they have any clue!!!!!!! no,,,,,i only have 3 to 4 ch's per day i can just tough it out right,,,,,,,i am beginning to not like my ins co.... but i think i am getting to the end of my cycle, the shaddows are less and less and the 02 works better and better and shorter too. i hope this will be a long remission when i get there but it still likes to get me out of bed at 11:00 every darn night like an alarm clock,,,,, maybe i should find a 3rd shift job hahaha. i have also begun chatting with someone from here that lives about 10min from where i work. so im hoping to have a meeting for lunch with them. Hooters is just down the road.lol. too bad we cant have a cold beer together. that would be fun. also lastly i live real close to chicago,,,,,i may come to the convention sounds kinda fun.......a little Leary being i met you all off the computer but still fun to talk with some of you all. thanks again
Tye
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Re: not too sure what to think
Reply #18 - Aug 25th, 2009 at 9:43am
 
Tye,

Don't ever be afraid of meeting a CHer... I've been doing it for years and I've yet to meet a stranger (or an axe murderer). After the first experience - you'll drive, fly or ride a bus to get to where another CHer is... trust me on that one...

Go to Chicago if you get a chance and meet some of the gang... you won't be sorry....


Oh and Welcome to Clusterville...

Hugs BD Kiss
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Re: not too sure what to think
Reply #19 - Aug 25th, 2009 at 10:45am
 
Hi all, I'm very new to this site, but am already very grateful for it.  I was reading a lot of the other messages and stumbled on to this one.  Did someone say something about a CH gathering in Chicago? I live close as well.
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Re: not too sure what to think
Reply #20 - Aug 25th, 2009 at 5:09pm
 
wrngwae wrote on Aug 25th, 2009 at 9:12am:
well all the 02 has been working wonders for me and i got a new prescription for imitrex injectables,,(gulp)


I tell you what Tye, a ten second poke in the arm or leg beats an hour or more with the beast!!  Buck up  Grin 

Glad You found out what it is and I am sorry it's CH.  I wouldn't wish this on my worst enemy. 

If your wife finds times rough dealing with your CH make sure she visits the supporters corner of the site.

PFDAN to you!
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Re: not too sure what to think
Reply #21 - Aug 25th, 2009 at 5:44pm
 
If your mask has holes in it, you might want to get one of the non-rebreathers off the ch.com store. Hopefully your cycle is nearing it's beastly end, but good to have your aresenal stocked for next time.
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Re: not too sure what to think
Reply #22 - Aug 27th, 2009 at 9:24pm
 
thanks ginger,,,,,,i know it is just a little needle but man i dont know why it it is so hard for me ,lol but i guarantee you when the 02 is out and there is nothing else it will happen....but for now im freshly stocked up on 02,,,hahahaha. and QnHeartMM,,,, i got the other side of the mask taped up so it is all good 02 and non of the other thanks!!!! good tip here!!! so tomorrow i am off of work,,wwwhoooot but too bad it is for my mri, and eeg scans. not to mention my blood test too,,,i hate needles but it is easier for me if someone else does it hahaha.and tonight i have to sleep with a blood 02 sensor on my finger tip,,,,,,,,not too sure why they want that but they do. i think it is to see if i keep my 02 levels up good enough at night since that is when im most hit!!!!! i have only had 3 to 4 nites of straight thru sleep since July and it is getting very old very quickly....just thank god for the 02 tank about 15 min and im back to bed but still split sleep stinks!!!!! so for now good nite and pfd and nites all. i will keep you all informed of my results
Thanks
Tye
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« Last Edit: Sep 3rd, 2009 at 9:06am by wrngwae »  

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Re: not too sure what to think
Reply #23 - Sep 3rd, 2009 at 9:04am
 
well, i have been very busy,,,very busy with all the darn test they are running me thru. so im gonna try and keep it short. i had slept one night with an blood oxygen meter on my finger one night, had some blood test, an EEG and an MRI,,,,,whew,,,all have come back good accept they found some water retention pocket scist in my nasal cavity. there are 2 one is lamely stated behind my left eyebrow and one on my nasal septum. they think that they are fine and may have some cause to my HA's. but today i am going to a ear nose and throat spec. for a scope of my nasal cavity,,,,,sounds fun huh,,, but that is all i got right now on this so this is yet to be determined as a "root cause" idk why but they think it has some bearing on my condition. but also on a lighter note my cycle has stopped for a week today,,,,,,oh glory full sleeeeeep all nite once again. it is a much needed catch up too with all the doc and hospital visits and not to mention work. but till later PFDAN's to all!!!!!!!!!!!!
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OmG.it.Hurts
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Re: not too sure what to think
Reply #24 - Sep 3rd, 2009 at 11:02am
 
Oh, remission sounds wonderful! Haha. I see everyone here uses oxygen... I should talk to my doctor about that. But, I too go for a CT scan for my head on October 1st. As I've gotten older I thought I'd get down to the bottom of this, know what I mean? It's affected your job? I lost my job because of it.. Missed to many days, and those sorry people have no clue what I go throught at night. I'm in my 3 week, and usally my cyles last 8 to 10 weeks. But, sleep sounds good! Sleep a few hours for me, alright? haha.
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"It feels like... Mike Tyson is here, giving me right hooks to my eye, while a jackhammer is chipping away at the top of my head.. Oh, and to top it off, my neck feels like it's in a huge vice grip."
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