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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> newbie needs to vent
        
(Message started by: daniel_tn on Aug 8^th, 2005, 10:07pm)

Title: newbie needs to vent
Post by daniel_tn on Aug 8^th, 2005, 10:07pm

i'm only on because i read somewhere on here that somebody said that sitting in front of the screen was helpful in some way.
i need to vent a bit, and i know folks post this kind of crap all the time, so please forgive me.
i got diagnosed yesterday at the ER, even though i already knew from this site and others that i have CH. the CAT scan was clear, so that is good.
i missed my early morning hit, so got a good night sleep last night.
i've been waiting for the punishment all day, with shadows and cues all lining up, but nothing came.
then, just finishing dinner it hit. ramped up to a 9 in about 5 minutes. within 15 minutes i was pacing a crying and weeping in agony.
i thought yesterday during the lull time.. hell, i can handle this crap, i can deal with it.
i was wrong.
this is the most intense agony i've ever experienced. it's the worst one yet.
i took two lortabs that the Er doc gave me, and it didn't do a damn thing.
now two hours into it, it's ramping down to a 7 and i'm feeling some small relief.
my mother in law suggested a cold ice pack, and that actually gave me some localized relieft.
i don't know how i will function at work if i start getting hit with these during work hours.
i;m simply stunned by this nightmare and have no f**king idea how i can deal with it every day.
i actually thought about banging my head against the wall an hour ago. and only yesterday i thought, oh, folks are just exaggerating, or their pain threshold is lower than mine. bs. it;s a nightmare.
you are all in my prayers and yes, you can bet i will be praying hard later before i try to sleep.
thanks for listening.
best,
dan

Title: Re: newbie needs to vent
Post by unsolved1 on Aug 8^th, 2005, 10:56pm

I know you may not believe this, but i've been through what you're going through now. It sounds like you're having some major hits. One thing I do during a major hit is to tell myself "this will end". It seems to help a little. Waiting and worrying about the next one will only bring on anxiety and make things seem even worse. Try to live your pain free hours as stress-free as possible.

Remember "this too shall pass"

Stay strong and NEVER give up. Find a doc who will listen to you and help you. There is something out there that will help you, you just have to find it.

Goodluck

Pain Free Wishes

UNsolved

Title: Re: newbie needs to vent
Post by nani on Aug 9^th, 2005, 12:02am

Listen to UNsolved, daniel... he's right. This won't kill you and it's just a matter of time before you find something that will help. In the meantime, we're all here for you. We really understand. When you feel like you're at the end of your rope...just holler...we've got lots of rope. pain free wishes, nani

Title: Re: newbie needs to vent
Post by Jasmyn on Aug 9^th, 2005, 12:35am

Hang in there Dan!

Title: Re: newbie needs to vent
Post by BobG on Aug 9^th, 2005, 1:17am

daniel, sorry you're hurting. We have all been there. We know what you're saying. Venting is a good thing. Let it out.
Over on the Getting to Know Ya board is a thread 'Letter to Employers'. Might be a good idea to print it and take it to work with you. Let your boss and co-workers know about your headaches before they actually have to see one.
Maybe you boss will allow you to have an O2 tank at work just in case you need it. Can't hurt to ask, can it?
The ice treatment is something I've always used. Glad it worked for you. Some people use heat. You have to find your own way to cope.
Good luck to you. Vent away!

Title: Re: newbie needs to vent
Post by daniel_tn on Aug 9^th, 2005, 3:12am

bob,here it is again, 3am. thank you for the letter idea, i'll check it out.
hell, i even prayed really hard before i went to bed, too :o :-/ :-X :-[ :P i'm so horrified by this. i'm supposed to fly north in a few days, how can i do it??? i am thinking of cancelling. i think my life is going to be ruined now. i can't believe this is happening.

Title: Re: newbie needs to vent
Post by AussieBrian on Aug 9^th, 2005, 4:03am

on 08/09/05 at 03:12:49, daniel_tn wrote:

i am thinking of cancelling. i think my life is going to be ruined now.

If that's what you're thinking then you've lost and the beast has claimed another victim.

Don't let that happen, mate. You're in charge, you take control! We know exactly what you're going through but tough it out, just for now.

Trust us. All will be better in just a real short time.

Title: Re: newbie needs to vent
Post by daniel_tn on Aug 9^th, 2005, 4:12am

on 08/09/05 at 04:03:58, AussieBrian wrote:

aussie, thank you for the reality check. i really appreciate it. you are right. i won't cancel.
i took one kudzu, one glass of coolaid, and one lortab,and i am now down to kip5
:o :D. heck, i might even be able to get back to sleep.
and get this... our cat who ran away a month ago showed up this afternoon! he's sitting on my lap, happy as hell.
thank you for your reply. it really helps so much.
daniel

Title: Re: newbie needs to vent
Post by sandie99 on Aug 9^th, 2005, 4:48am

Daniel.... [smiley=hug.gif]

I'm so, so sorry you're getting hit badly right now. :'(
I hate the kip 9s.... >:( And I recall thinking that ch is ruing my life, too. But Daniel, DON'T LET IT!!!

I know that it's easy to put the rest of your life on hold because of ch and just concentrade on the pain. But routines can help.... At least, doing regular things in spite of ch kept me together. But you're stronger than you think! We're here or you, all the time, day or night.

Don't be afraid to vent, email, send IMs... your ch family is here. :)

Sanna

Title: Re: newbie needs to vent
Post by wip5150 on Aug 9^th, 2005, 8:21am

Daniel,

First of all, I'm sorry you're going through this. We've all been there and it's scary as hell. Even though it's been said several times in this thread, don't give up.

With my job, I travel a lot and when I'm in a cycle there are few things that scare me more than the pressure changes associated with flying. However, that doesn't mean I sit at home - I just deal with it the best I can and live my life. Some headaches are worse than others but, like Unsolved said, it will pass. When I'm in a cycle, I always think that each headache I have is one closer to the end of the cycle and that does help a little.

A word of advice: trial and error. You'll find what works for you. I've found that downing a Red Bull at the onset of a headache can cut the pain in half within about ten minutes. I also use Imitrex nasal 20mg and that will abort my headache 80% of the time within about 20 minutes or so. This past cycle my doctor perscribed Verapamil (120mg 3x a day) and that broke what was my longest cycle. The point is, find a doctor that will listen to you and work with him/her to figure out how to attack your beast.

Best of luck and hang in there my friend.

Title: Re: newbie needs to vent
Post by Sandy_C on Aug 9^th, 2005, 8:23am

Daniel - vent away. That's what we are here for. Sorry you are having such a hard time of it right now, but IT WILL GET BETTER! You have to keep reminding yourself of that. Keep telling yourself it will end.

hugs [smiley=hug.gif]

Title: Re: newbie needs to vent
Post by daniel_tn on Aug 9^th, 2005, 9:15am

thank you all for your comments.
i'm at work now, and so far so good.
i have an appt with a neuro for this afternoon.
i'm very pleased about that!
also, ordered the 1200 mg kudzo online last night.
bought the 631s and working my way through those.
thanks again, all!
:)

Title: Re: newbie needs to vent
Post by nani on Aug 9^th, 2005, 9:21am

Daniel, don't wait for a HA to start before you take the kudzu. It's not an abortive. Take your doses an hour or so BEFORE you think you're going to get hit. PM me for more info if you'd like. pain free wishes, nani

Title: Re: newbie needs to vent
Post by E-Double on Aug 9^th, 2005, 11:23am

Hiya

This is a great resource to know like the back of your hand...print it out and give it to your 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 recently been using 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.

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.

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

Best wishes, good luck & stay as positive as you can!!!!

Eric

Title: Re: newbie needs to vent
Post by clusterkat on Aug 9^th, 2005, 1:41pm

*smiles understandingly*
ive been a sufferer for 3 years,
best advice for me,
has been payin attention to my triggers,
food, stress, over medicating, climate changes,
all affect us differently.
try to stay calm dan,
dominate the ch beast,
with info & patients.
trust me, i feel your frustration 10 fold,
i am planning my wedding,
going to dinners & showers,
and the beast is with me always.
good luck & welcome,
everyone is very kind & supportive.
^kat

Title: Re: newbie needs to vent
Post by kimmeesue on Aug 9^th, 2005, 3:50pm

Glad you found this site. I sufferrred alone for a lot of years.
Like you I tended to "anticipate" the worst and it was like a self-fuldilling prophesy. You can't stop the "event" but you can have control to a degree.
A good doc is key but be prepared to feel like a test subject for a sci-fi experiment. I hope the kudzu works for you and you can avoid the rest of it.
Have you tried melatonin? Does wonders for the night hits. I've had only two night hits since starting it last Dec.
Good luck. And congrats on your kitty coming back.

Title: Re: newbie needs to vent
Post by Smurf on Aug 9^th, 2005, 4:26pm

Hiya Dan,
So sorry you were dancing all night! :'(I was with you for part of it. I can't type when I'm having them, though, so I catch up with everyone during the day.

I'll try the melatonin with you tonight! Don't give up, even though when you're having them it's real tempting. Prayer is really the best thing you can do. You're not being punished for anything, if you're from one of the guilt-ridden religions like I was (past tense, if you notice!).

Everyone here is so great with their support and suggestions - best place to be when you're suffering from the worst!
Hugs of encouragement!
Smurf

Title: Re: newbie needs to vent
Post by daniel_tn on Aug 9^th, 2005, 5:01pm

thank you all. it's great to see all this encouragement!
well, just back from the neuro. he hadn't heard of kudzu so i gave him a printout about it. so, i have imetrex (orally to start), 7 days of prednisone, and some other junk for when the imetrex runs out or i have multiple hits in a day.
is it ok to take melatonin in addition to all this other stuff?
and, i have "ghost" cues - it seems like it's just about to come and hit, and then it doesn't. i have these 5-10 times before i get the real one. so, my anxiety is constantly rising. i'm a mess about it, really.
i'm supposed to go dancing tonight with the wife, but i think i want to cancel.
:-/

Title: Re: newbie needs to vent
Post by nani on Aug 9^th, 2005, 5:04pm

Those ghost hits (I call them phantom) are signs that the kudzu is working. :) Imitrex in pill form won't help much, as it takes a while to get into your system. That's why statdoses and nasal spray is recommended. I'm sorry he didn't give you oxygen...it's really the safest abortive out there. What's the other junk?

Title: Re: newbie needs to vent
Post by rickyshot on Aug 10^th, 2005, 1:52pm

OMG I HEAR you :'( I thought I was the only one who stuck my head in the freezer

For you [smiley=hug.gif]

Title: Re: newbie needs to vent
Post by vig on Aug 10^th, 2005, 3:10pm

on 08/09/05 at 17:01:14, daniel_tn wrote:

i'm supposed to go dancing tonight with the wife, but i think i want to cancel.
:-/

go anyway....

GO!!!
make it fun.
(struggle anyway)

Title: Re: newbie needs to vent
Post by marlinsfan on Aug 10^th, 2005, 3:22pm

Go dancing, but stay away from alcohol. It is a sure trigger for most of us. I don't dance much without a few beers in me, so needless to say, I don't dance much while in cycle....

You can take melatonin while on the prednisone taper and while on imitrex. Don't know what your other junk is, so can't say for sure.

Melatonin took a few days to work for me, but has made my nights bearable. Be sure you take the same amount every night, don't miss a night, and take always 30 mins before going to sleep.

Have you tried Oxygen? I hope you read what E-double wrote, he's the man. Oxygen works very good for most of us.

As for travel, I do a lot for work. I talk to my Oxygen supplier here in FLA, and they hook me up with O2 through other suppliers. In July I went to Phoenix, and they setup the O2 so when I checked into the hotel, I had 3 tanks in my room!

The caffeine works well to kill the shadows or ghosts as you call them. When I get a shadow, I'll chug a strong cold cup of black coffee. It kills it almost every time. I personally don't use red-bull, because I found that the citric acid is a trigger for me too. Also aspartame is a trigger for me (the sweetener in equal, diet coke, many of the mints/gums, etc.).

We're here for you. Come vent anytime, we've all done it. When you come to grips with it, and stop venting, keep coming to support the others.

PF wishes.
Jose

Title: Re: newbie needs to vent
Post by marlinsfan on Aug 10^th, 2005, 3:25pm

One more thing, on the work front. I work for a large company, and we have an infirmary on the 1st floor. I got an extra Oxygen prescription in my wallet, just in case, and I gave the infirmary a copy. Anytime I get a daytime hit, not many thankfully, I can run to the infirmary and suck on the oxygen!

Talk to your boss, he/she may let you keep a small tank in your workplace. Oxygen will kill my hits in 10-12 minutes, but the beauty of O2 is that it stops the headache from climbing up the kip scale, as opposed to the imitrex which take 20-30 minutes, and the headache keeps getting worse and worse until the trex kicks in.

Title: Re: newbie needs to vent
Post by Kim Y. on Aug 10^th, 2005, 6:02pm

Don't cancel. Have fun while you can and deal with the hits if they come. Live life to the fullest and don't let the beast stop you.

Sorry that you have been having such a ruff time lately. [smiley=hug.gif]

Thoughts and prayers..................

Title: Re: newbie needs to vent
Post by E-Double on Aug 10^th, 2005, 6:16pm

You better go out or I will find you and smack ya around!

you are not to let this thing control you.

Make sure to get a grip as soon as you can (we are here to help with that) and to live life to it's fullest.

The fact is that if you're gonna get whackedit will happen at home or out so learn to live with it and show your honey a great time!!!

She needs it too as do all our supporters.
They are our backbones & it may lead to some extra fun ;)

Hope ya have a blast!

Eric

Title: Re: newbie needs to vent
Post by lady_bug on Aug 10^th, 2005, 7:14pm

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
[quote][/quote]

I have been a sufferer for 37 years, and the "tricks" quoted above have worked wonders for me...it's worth a try for sure!
I'm terribly sorry that you're having such a rough time, these headaches are life altering...but I'm living proof that you can live a productive and happy life in spite of these monsters. You will be in my thoughts and prayers.

BTW...hi E-Double!

Title: Re: newbie needs to vent
Post by lady_bug on Aug 10^th, 2005, 7:20pm

I obviously need to work on the "quote" thing...but I think I made my point anyway! [smiley=huh.gif]

Title: Re: newbie needs to vent
Post by cazman on Aug 10^th, 2005, 9:43pm

hey bro im with ya i just got to the otherside a few weeks ago around 4 weeks ago im still getting this outa time wierd hit ilke once a week but its a weak hit, but i just went thru was 11 weeks of shear hell 80% of my hits were k9 or better and they lasted 2 hours most of the time one night i too an amatripliyne pill perscribed by a doctor it was like throw jet fuel on a gas fire and it lasted almost 4 hours i truley thought i went permanant over drive and i was horrified nothing helped at all . hell before i knew what i had i thought all kinds of terrible things it was this site that told me without a doubt 1 im gonna live and that it has a name, well many names in here,2 and most important I AM NOT ALONE!!! and nor are you im sure everyone in here could tell of horrors of theyre own the fact it most here know what a k9 is and we all have asked why me over and over , i will live you will live all you need to know is here at a click of the mouse and support is breading here i just went thru some unpeasant life changes and getting hit this cycle i could not work at all the life was sucked outa me but its over and thing are better than they were before i used alternative meds to break my cycle im grateful and hummbled after this ordeal if you see im outa cycle and im still comming here to help people like you get thru it as many are here. thats how it works so lean on us a much as needed but remember to give it back to others you might find relief in just that act i know i did anf still do.
ERIC T

Title: Re: newbie needs to vent
Post by daniel_tn on Aug 10^th, 2005, 9:43pm

on 08/10/05 at 18:16:20, E-Double wrote:

You better go out or I will find you and smack ya around!

you are not to let this thing control you.

Eric

hi eric,
we did go dancing. it was our last lesson in a cycle (no pun intended). after the lesson, the dance instructor gave us a real hard sell (probably into the 1000s - but she wouldn't talk money even though i asked 4 times). i told her that i had already decided on a competitor at a much cheaper rate, and that it was nothing personal, etc. she wouldn't let up, and i had to get up from the table and say, i'm sorry i just won't say yes and it has nothing to do with you personally, your facility or you as an instructor, i just need a cheaper place. she was not happy! but the thing is... i didn't get hit!
in fact, i haven't got hit in almost 48 hours. i don't understand what's happening now. i'm on edge all day waiting for the damn thing to hit, and it doesn't.
i get shadows and cues all day long, even the gums, jaw and eye thing, and then it subsides.
i started all the meds yesterday and kudzu the day before - heck, maybe it's all working now??
gosh, i'm really confused.
but, with my luck lately, i'll wager that i'll be posting later tonight by mid-morning.
best to all and thank you for your support. it really helps.
daniel :D

Title: Re: newbie needs to vent
Post by E-Double on Aug 10^th, 2005, 9:54pm

Right on Daniel!!!!!!!!

Don't sweat what might or might not come.

I turned chronic in March and honestly I learned a long time ago to just go with the flow....Chances are I will get 2-3 visits a day along with shadows and if lucky I will have some other weird HA variant to party along inside my brain. It doesn't matter!!!

Though I am positive for 90% of the time I sure as hell know what it is like to burn out and cry adn dread the days and night.
I cope fairly well and will continue to do so because I have to!

So do you!!

you will kick it's ass and be there for your wife and dance many a night away.

Be well!

Eric

P.S. Lady_bug is a hot mama ;)

Title: Re: newbie needs to vent
Post by nani on Aug 10^th, 2005, 9:59pm

It seems to me, that the kudzu might be workin' for ya, dan. :D Don't dread what may not happen, OK. It's a real buzzkill. I always say... hope and expect the best, and, just in case, prepare for the worst. Glad to hear you're getting a break! ~nani

Title: Re: newbie needs to vent
Post by Kim Y. on Aug 11^th, 2005, 7:13am

Dan

We are always here for you if you need to vent, cry and so on.

I hope and pray the Kudzu continues to work for you. You deserve relief.

Keep us posted we all love to hear someone who is PF.

Take care of yourelf

Title: Re: newbie needs to vent
Post by seasonalboomer on Aug 11^th, 2005, 7:59am

daniel,

indeed. you're showing all the signs of kudzu working. now just roll with it. and, continue to stay from triggers for a couple-few weeks, stay on a stable sleep schedule, and worry less. then in 5 more days post your results on the Kudzu survey thread. the data is inportant to all of us.

scott

Title: Re: newbie needs to vent
Post by daniel_tn on Aug 11^th, 2005, 10:20am

hi scott,
thanks for all the posts!
this is the third day with no hit! shadows all the time, and standard tension headaches constantly, and cues continously, but not hit. i slept through the night uninterupted again. very nice. about not worrying- i will really work on that. :o
i will post more soon.
thanks for all the support, it's been a G-dsend!
-daniel

Title: Re: newbie needs to vent
Post by tenacious on Aug 11^th, 2005, 5:13pm

on 08/11/05 at 10:20:49, daniel_tn wrote:

about not worrying- i will really work on that. :o

-daniel

I think you'll find the not worrying comes with the passing of some time. To the best of my knowledge, all the people saying things like "hang in there" and "this too shall pass" have been dealing with this a lot longer than you. They are absolutely right. They speak from experience. So do I. As you battle the beast, you will gradually find out what treatments and coping skills do and don't work for you. You will also begin to see the pattern of your own survival. It gets a lot easier as you begin to realise firsthand that the pain really does end. Until then, try to relax and live your life as best you can.

May you have short, easy cycles (or better yet, none!) and long remissions. PFDAN

Title: Re: newbie needs to vent
Post by aradon on Aug 12^th, 2005, 7:39am

on 08/09/05 at 04:03:58, AussieBrian wrote:

The beast claimed me a few years back, i just play cards with it now when it decides i need to visit the floor, hope everything goes well for you dan ;)

Title: Re: newbie needs to vent
Post by jon on Aug 14^th, 2005, 8:56am

Daniel,

Find a good neuro. Jan Brandes is the best in Nashville for CH but it is near impossible to get a current appt. I see William Strickland and he is pretty good. After 10 yrs with CH it is almost comical because you end up knowing more about it than most doctors, that's why you need a neuro. Otherwise you are at the appointment telling them what to prescribe and what not. The best abortive is imitrex but insurance companies do not give you enough. O2 works good if you catch them in the beginning stage. I have tried everything and swear by some (regrettfully not easy to get).
Hang in there. I would be glad to talk to you offline as I am in Nashville everyday. The pain in excrutiating and I hope you wife and friends understand. Because you just want to choke someone who says "oh I have headaces too but it doesn't slow me down" or "I have migraines". The same when the ER puts me down as migraine.
Pain is one very big thing, but so is depression, dread and lack of sleep.