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Title: I've been lost.....till now Post by Paulntra on Mar 2nd, 2006, 8:53pm I have been wondering for the last 7 or 8 years what is wrong with me, scared to go to a doctor and find out. I had never seen a description of my nightly ritual during a "cycle" like I did at CH.com. I really DO feel like I have found brothers and sisters. I am 3 days into a cycle and before this cycle I had been symptom free for about 3 to 4 months.... Since I didn't know what it was that was causing this pain I always lived in hope that it was "allergies" and "seasonal" or that once I didn't have one in an evening the pain would be gone forever.... So here I sit, 3 days into a cycle, scared to death to go to sleep.....I know what is waiting for me. At least now I know what it is so now I can go try and find something that will subdue it once in a while. Odds are I will be in here tonight talking to you guys....If I can stand to sit in front of a glaring monitor and read and type once one of them passes just as swiftly as it arrives. It really is a sick feeling when you first wake to coniousness knowing that one is on the way and there is nothing you can do about it.... I get it now, I always wondered why I was such a wimp and wimpered through these things. I remember thinking "if it hurts so damn bad, why am I not crying?" BECAUSE IT HURTS TO MUCH TO CRY!! My right eye may be tearing up but that isn't crying, because I think crying would make me feel better and I can't have that relief either.... OK....time to prepare for the nightly ritual...At least I am not alone anymore....at least I have you guys. Hello everyone, my name is Paul Jones. I live in Panama City, FL. I have 3 children and a loving wife.... Chance - 11 Connor - 7 Chloe - 9 Mos. Tracy - Wife I am glad to have some friends.... |
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Title: Re: I've been lost.....till now Post by Jonny on Mar 2nd, 2006, 9:05pm DAMN!!!......reading the title of this thread I was hoping it was started by a hot chick. ;;D Oh well, welcome to the family, Paul....sorry you have to be here!! I was chronic for 30 years and cried like a baby when it got above a Kip 9, pacing, cursing and crying "Go away,please go away" For over a year I have not had one HA, they just stopped. I am off all meds and living life like I never knew exsisted for the last 30 years. This could happen to you....NEVER EVER GIVE UP!!! Got it? |
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Title: Re: I've been lost.....till now Post by Paulntra on Mar 2nd, 2006, 9:11pm Thanks for the kinship Jonny...I wont give up hope....now.... :) I am dreading sleep in an hour or so tho.... Last night was a Kip 9'er....pretty tough.... There are more of us than I thought....I'll be leaning on that throughout these ordeals.... Thanks again. Paul |
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Title: Re: I've been lost.....till now Post by lionsound on Mar 2nd, 2006, 9:24pm Welcome, Paul! I have three children ages 11, 7, and 2mos. and I AM the loving wife. ;;D Be sure to read a lot around here and ask any questions you may have. You are not alone! Be well and Pain Free, lionsound |
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Title: Re: I've been lost.....till now Post by Richr8 on Mar 2nd, 2006, 9:26pm Sorry you had to find us, but glad that you did. It looks like you have much reading to do with all of the tips and links provided although no one has reported any universal miracle cures, maybe one of the newer regimens will work for you. Despite the health risks associated with it, Prednisone tapers have reduced my cycles to several weeks from several months. I use O2 as an abortive and Verapamil as a preventive with 6mg of Melatonin to hel with the sleeplessness brought on by the beast and the Prednisone. Anyway, dig in, start reading and ask all the questions you want. Ther are lots of great folks here who know exactly what you are gouing through and will help in nay way they can. Rich |
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Title: Re: I've been lost.....till now Post by Jonny on Mar 2nd, 2006, 9:34pm Try some Melatonin an hour before bed time, folks say 9 mgs is a good level....and its over the counter. You can also try Dramamine......it cuts down on REM sleep, thats where the beast lives. |
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Title: Re: I've been lost.....till now Post by Drained on Mar 2nd, 2006, 9:35pm Hi Paul- I have just posted for the first time tonight as well...unfortunate for us both that this is necessary, but important I think. My thoughts will be with you tonight as I'm sure to be experiencing the same symtoms once again. Drained |
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Title: Re: I've been lost.....till now Post by Paulntra on Mar 2nd, 2006, 9:35pm I know this sounds silly....(considering the pain), but I really don't like the idea of an o2 tank in the house.... Kids, ya'know.... The though of that just bugs me, I know, I know....then just suffer in silence if you turn down the options that work.... Can anybody give me a consencus on the next most successful abortive that works? Just curious...is it a spray? Red Bull? Any ideas? I am trying to prepare for tonight.... sigh..... Thanks for the support guys....it means the world |
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Title: Re: I've been lost.....till now Post by Paulntra on Mar 2nd, 2006, 9:39pm Quote:
So I can just walk into CVS or Walgreens and buy this Malatonin, Jonny? |
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Title: Re: I've been lost.....till now Post by BobG on Mar 2nd, 2006, 9:47pm on 03/02/06 at 21:11:40, Paulntra wrote:
Welcome to the board Paul. Try some Benadryl or melatonin before bed time. It may help to keep you out of the REM sleep mode where the beast lives. Click this linky thingy and scroll down for more responses. (That’s how we did back in the last century) http://www.clusterheadaches.com/wwwboard/messages/73200.html Margi (12-29-00 Dramamine/Gravol or Benadryl) |
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Title: Re: I've been lost.....till now Post by Paulntra on Mar 2nd, 2006, 9:52pm Quote:
OK....Im off to buy some Benadryl... I'll try anyhting to keep it away tonight.... ;) |
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Title: Re: I've been lost.....till now Post by Jonny on Mar 2nd, 2006, 10:06pm on 03/02/06 at 21:35:12, Drained wrote:
Ok Drained, im so sick of saying "Sorry you had to find us" Hows this...."Im glad you found us, you are now home" Paul, We never recommend anything that has not worked for most of the family.....we are not doctors, just info suppliers ;;D |
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Title: Re: I've been lost.....till now Post by Paulntra on Mar 2nd, 2006, 10:08pm YA know... I used to think I was pretty tough and had a pretty high pain theshold...You know....the Macho man thing. I was a Fleet Diver in the Navy for 5 years... Basic Underwater Demolition School, you know, that thing that "Seals" have to go through..... I played Div 1 College football at Auburn University againsta some of the biggest guys out there and sustained MANY on the field injuries.... They are all a joke compared to when you feel the 3rd or 4th one of the night coming on and start begging for it to change it's mind and go away.... You just can't help but think, "Jesus! Is it EVER gonna stop?!" I think writing about it on here helps me, or at least creates a diversion for me to stay awake and not go get into bed with my wife.... Maybe I'll try to sleep in the recliner tonight so I don't have to wake her when I get out of bed and leave the room when the beast comes to pay a visit tonight. I have taken the Bendaryl so we'll see....Hope it works... :-/ |
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Title: Re: I've been lost.....till now Post by Melissa on Mar 2nd, 2006, 10:11pm on 03/02/06 at 21:35:19, Paulntra wrote:
There are many people here with children of many ages who have O2 tanks in there home. What is it you are concerned about with the tank? Are you afraid the children will do something to it or have it hurt them (although I have no idea how [smiley=huh.gif])? And yes, welcome to the family! :)mel |
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Title: Re: I've been lost.....till now Post by Paulntra on Mar 2nd, 2006, 10:17pm Quote:
Well Melissa, I am concerned that they might mess with it and it could leak oxygen... I am concerned that I might go to light up a smoke after using the O2 to get over a visit from CH, as I often do when suffering), and lighting my clothes on fire.....lol I am concerned and embarrased...because we have many friends and We are still what I would call a young couple, who come over to visit all the time that if they saw it they would think "Oxygen, what's wrong with him?".... There are a number of reasons but needless to say they are concerns at this point.....or maybe just neuroses.... Paul |
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Title: Re: I've been lost.....till now Post by E-Double on Mar 2nd, 2006, 10:21pm Hiya This is a great resource to know like the back of your hand...print it out and give it to the doc http://www.brightok.net/~mnjday/chtherapy.pdf 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 I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover" http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753 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 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....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. (Maybe I should start folowing my own advice again hahahaha!) 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..... Like I said we are all different. Best wishes, good luck & stay as positive as you can!!!! Eric edited to add: Get over the emabarrassment over potentially finding relief through oxygen. It makes a great conversation piece and looks good with my house plants. Try it you'll like it! |
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Title: Re: I've been lost.....till now Post by Jonny on Mar 2nd, 2006, 10:32pm on 03/02/06 at 22:17:39, Paulntra wrote:
Here goes....your first blast of jonny. ;;D Who gives a shit about an 02 tank in your house, if people have to ask they aint your damn friends, or you didnt tell them. Chill on the the smoking worry, I own a welding shop and have been sucking it for years, as long as its shut off your set. Owning a half million dollar house tells me that I know how to treat 02......LOL |
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Title: Re: I've been lost.....till now Post by Paulntra on Mar 2nd, 2006, 10:36pm Thanx for the "tough love" Jonny...lol I know about the whole "then they ain't yer damn friends" thing too... Still, ya gotta think about it and thats what bugs me..... I'll get over it bro....just comin' to terms with this thing....thats all...... |
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Title: Re: I've been lost.....till now Post by Jonny on Mar 2nd, 2006, 10:49pm ;) |
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Title: Re: I've been lost.....till now Post by thebbz on Mar 2nd, 2006, 11:00pm 8) You have a lot to learn in a short time. Ya have a lot to read already. Eric and all of the above is good stuff. Welcome and get to the doc jb :P |
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Title: Re: I've been lost.....till now Post by BobG on Mar 3rd, 2006, 12:18am Quote:
If they ask, tell them the truth. If they can't handle the truth then toss their butts out the door, they ain't your friends. What if they saw you in the middle of the night with tears running down your face? Are they going to say "Oh big man. Whinning and crying 'cause of a little headache". What if your friends saw a wheelchair in your house? Or would you hide it? You have cluster headaches, the most painful condition known to man and womenkind. There is help available here. Putting on a brave, tough guy act for the neighbors and friends is one thing but we all know what it is like to be bawling your eyes out at 3 o'clock in the morning. And, about sleeping in the recliner........I've spent many nights in the La-Z-Boy. Elevating the head seems to help with the night time wakeup calls. It won't stop them but I have found I wake up sooner at a lower Kip number and strat the fight sooner. |
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Title: Re: I've been lost.....till now Post by Paulntra on Mar 3rd, 2006, 6:27am I know you are right Bob. Thanks for the support... It is 5AM in the morning....wnated to update you guys... THANKS SO MUCH FOR THE INFO!!! Simple Ol' Benadryl.....Who'da thunk it?! I actually had a PF night during a cycle.... I'll say that again.... I actually had a PF NIGHT!! I know it isn't a cure but I actually SLEPT! And I actually slept in my own Damn bed!! This support will be amazing, I can't thank you guys enough for the info, Jonny and everyone!! And you are right Bob....Through my self diagnosis I had figured out that whatever was hurting me every night could be lessened slightly by sleeping in the recliner. Not sure what that is all about... Thanks guys, I actually feel as if I can face the day..... Paul |
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Title: Re: I've been lost.....till now Post by E-Double on Mar 3rd, 2006, 8:16am You still NEED to get to a doctor!!!!!!!! I just noticed that you wrote self-diagnosis. This will hold you for a while and I realized after I gave you the med info. It is important to have proper diagnosis especially if you are going to attempt the medicinal journey. Some of the meds that we use are horrible and have nasty side effects. 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. 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. Good luck!!! E |
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Title: Re: I've been lost.....till now Post by Dragnlance on Mar 3rd, 2006, 9:32am Hi Paul, Welcome home. I am chronic, and have been all my life. Currently 42. There are many things that you can try. The water treatment listed to the left, as Clusterheads seem to be dehydrated, seems to help some. Energy drinks like Red Bull, slammed at the onset of the monster can help. Burning hot or freezing cold showers at the onset. Oxygen helps most people when hit with a big one. Herbs like Kudzu help some of us. Then there are the armys of drugs. None work well for all, but some work pretty well for a lot. There is tons of info here, and know you are no longer alone!! Lance |
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Title: Re: I've been lost.....till now Post by JenniferD on Mar 5th, 2006, 11:18am Hi Paul, welcome to the nuthouse. I'm Jen, 20 yrs episodic. I can't add anything to what the guys said, but I am glad you got some really great info and help. There is a lot of info, love, and support here so I hope you stick around. :) |
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