Thank you to everyone that embraced me on this sounding board.  I think the worst part - other than watching my husband collapse into tears and praying out loud to die - of this whole nightmare is feeling so alone.  I don't know why we turn into ourselves and think we are the only ones who ever dealt with this, but that has been my train of thought for the past 6 weeks.

I have watched my strong, manly, Harley riding husband go from smiling and loving all aspects of life to banging his eye, temple and neck until I thought he was going to severly injur himself.  I have never seen the life drain from someone so quickly and the zest for life drain completely.  Even when the "beast" isn't a-knocking, he is still crippled in fear that it is coming.  He won't leave the house (especially at night) out of fear.

I cannot express the deep sadness and helplessness I feel inside.  It feels very selfish to even complain about how I feel when my husband is so debilitated.

If anyone has ANY advice on how to strike the balance between my inner sadness and putting on my supportive wife hat.  I love my husband more than I could ever express and I am jsut at a lost of how to help him.  

I don't think sitting on the edge of the bed rubbing his back, telling him everything will be OK at 3am while he is crying in pain, is going to be enough...

Oh! This is why I hate the beast soo much!  You poor thing, the beast is trying to break you both down......but, know what?> He CAN'T! One thing I've learned, after 5-6-odd years here is that Clusterheads are the strongest people on this earth! It's true!
The other thing I've learned is that the beast will do anything he can to prove that statement wrong. People become afraid to step outside their homes, supporters sit and cry with their sufferers, and, pretty soon, the beast wins!
A few facts might help right now.
1-CH does not kill(it seems like it sometimes, but really, it doesn't)
2-No 2 Clusterheads are alike, so, with time and trials, you will find how best to fight back with meds.........and 02! Get a Diagnosis, then start looking for preventatives and abortives.
3-There is plenty of artillery available to you...begin with educating yourselves.....read the buttons to the left, ask questions here......
4-There's most always someone here to help you through a rough spot.
5-If you remain calm, never let your sufferer see how hard this is, you become stronger and so does that CH'er-and 2 people can fight much better than one.
6-Celebrate the PF times-THAT is your life....not these hits, and when rested and calm, talk to your sufferer about how YOU can help during a hit.
7-Most important, a chronic Clusterhead once told me 'Life is
Good"..... I believe him, even though I know how often and how hard he gets hit.  He's right, y'know..........
Now, regain your strength, read, ask, read and ask.......and know there are a ton of people here with a lot of knowledge to help you learn to deal.
Oh, and please remember, supporters need some pampering too...find some ME time, do something for YOU,,,,,,,,,a pedicure, even a nice hot bath-unfrazzle, so you can go another round when necessary........
Here's a big ole hug........feel it?? You're no longer alone with this........
Wishing you PF
Cathi :D

Hi Kristen.  I'm so glad to not call you helpless wife.  You're not helpless, believe me.  You are very important to your sufferer even if you don't realize it.  You are not alone anymore, my friend.  The family is here to support you.  

I know what you mean about watching your loved one retreat into themselves.  For almost 10 months my hubby very seldom left the house and then we found this website.  We've gotten wonderful advice and support.  One of the best things, and I have heard this from many people, is live life one moment at a time.  Take the PF moments and cherish them and go out and enjoy something that you both love to do.  Get on that Harley and ride girlfriend.  BTW - I'm so jealous that you have a Harley  ;D  We have a Yamaha, and I like it, but it's no Harley.

I feel your pain and your sadness and I'm right there with ya.  You have to remember this, you need to take care of you too.  Take time for yourself.  Take a bubble bath, read a good book, go shopping, whatever it is take time for yourself.  You can't be strong for your man if you're not taking care of yourself.

Your not being selfish at all having those feelings.  Feelings are what makes us human.  You need support too and believe me you have found it.  When he's not getting hit talk to him and ask him what you can do for him.  My husband likes to be left alone, but sometimes he lets me sit and hold him or rub his back, because he knows that will make me feel better.  Like I'm helping him in some way.

Please try to stay positive.  I know that it's easier said than done.  Live each PF moment to the fullest, even if it's just taking a walk together.  Celebrate it the PF times.  

We're here for you.  Just keep reading and posting and someone will be along shortly.  Read all the info to the left and read the OUCH website.  There's a treasure trove of information right at your fingertips.  Ask as many questions as you want.  Someone will have the answer or will find the answer for you.

Stay strong, stay postive and take care of yourself and your wonderful hubby.

Love, Hugs and Kisses  :-*

Jen    

It took me a moment to compose myself before I responded.  I am hoping that my laptop is immune to tears :)

I have not felt this positive in a long time.  I cannot put into words what it means to me that you have taken your time to reach out to a total stranger.  I can feel myself gaining strength from the wonderful words and stories I have been reading through.  There is genuine love and support that is rarely found these days.  I am sorry that we all have this in common, but life works in mysterious ways.

To give you some insight into our life, my husband is a Police Officer and I am a graphic designer for an advertising company.  We are very grounded people who love the simple pleasures in life to be found on a long motorcycle ride or in a glass of wine sitting outside in the summer.  We have always thought of ourselves as lucky to have found each other after both being divorced and thinking we were just unlucky in love.  I have never known the kind of love I have with my husband - it's warm, safe, understanding and content.  Now, it seems that this nightmare has taken center stage and has no plans of becoming easier to deal with.

My husband is currently on Lyrica and Prednisone.  He has has every medical procedure you could think of to rule out any other possiblities.  Final diagnosis - cluster headaches.  

One thing I would like to mention is that every ER we went to treated him like he was an over dramatic baby with "just a headache".  How demeaning..

Well, my most sincerest thank you for giving me strength and support.

Warmest Hugs,
Kristen

Kristen, That is the reaction most Chers get when they go to the ER.....and, the hit is usually over by the time they get seen!
ARRGGHH! Well, with a bit of education and some time elarning how to cope, I suspect you won't be going to the ER anymore for CH......

Hey, Jen & Phil are in Michigan......wonder where Holland MI is as opposed to where you are Kristen!  I'm in Portland Oregon......never been to MI......but, really, there is NOTHING like meeting a Cher! I recommend you find a way to meet! HEYYY, Flipperlips!!!!!!!!!!!!!!!!!!(I just love the name!)

Now, don't be strangers! Ask and tell. ...no question is dumb........let  us know how we can help!

Cathi :D

Kristen....Cathi is one of my best supporters around these parts.   What she has said I cannot add to.   Listen to her, she is wise beyond her years.   ;)


Linda

Hi Kristen,
I'm married to a cluster sufferer too.  Yes, it does give you a helpless feeling but there are things you can do to help.

I'm sure you all have talked about what he wants from you during an attack.  Does he want to be alone (as many do) or does he want you right there during an attack (as my Blake does).  Blake wants me to 'gently' coach him.  Help him concentrate on deep breathing the 02, perhaps get him a cold cloth, etc.  An old timer (jonny) once told me, "Jacks, he wants you there cause if you are he's sure it won't kill him and he's not as scared".  So, if you haven't already, get a plan so you can fight this SOB together.

You are your husbands greatest advocate.  Educate yourself, Sweetie.  Read everything you can both here and on the OUCH site (button on the left).  There are a bunch of 'home remedies' that can bring him some comfort and relief......hot coffee or tea,  ice packs (bag of frozen peas),  hot compress, etc.  Each sufferer is unique and different things bring them different degrees of help.

It takes work on both your parts.  There is so many different med. combinations.  It takes time to figure out which produces the best results.  Be willing to try.  

Are you comfortable with your doctor.  Does he listen?  Has he treated other cluster patients.  Sometimes we have to educate our doctors.  To do this they have to be will to cooperate too, which isn't always the case.  Go to the appointments with your hubby if you can.  Our sufferers are sometimes so worn out and down that they can't advocate for themselves so we have to speak up for them.  I've had 'knock-down-dragouts' with more than on doctor and fired a few too. ;)  There are good ones out there.....some really good ones in Michigan too.

Oxygen therapy is the #1 abortive for most sufferers.  It's important that it be delivered properly.....correct mask and flow rate.  This info. is here and on the OUCH site.  Check it out if you haven't already.

Try to be strong, Sweetie.  It's hard but I'm thinking you're a good supporter and can do it.  Try not to cry in front of him if you can help it.  Our sufferers feel guilty and sometimes if they see us upset it makes them feel really bad.  Cheer him on.  Make him believe this is a little bump in the road but that you call can do it together.

Try to enjoy every pain free minute.  Live your lives as normally as possible.  Ride your bike or whatever.  The SOB beast will find you no matter what you do so why let him steal your lives.  

Make sure hubby eats and sleeps as normally as possible.  I found that if Blake missed meals or changed his sleep patterns if was worse.  Of course sleeping during cycle is a problem but try anyway.

Keep in touch....talk to us....have hubby tale too.  It's a great comfort to have the help and support of people who know.

We live in northern Indiana (couple miles from MI).  I'm wondering how close we all are.  Jen/Flipperlips and Phil are close.

Hang in there.  You all can do this.  Keep telling yourself that because it's the truth.

Big Hugs,
Jackie

Hi Kristen.  Just checking in to see how you're doing today.  You sound like a super awesome supporter.  Don't you doubt that for one minute.  Anyone would be lucky to have you in their corner.  As Cathi and Jackie have both mentioned we live in Holland.  Where abouts are you here in Michigan?  Maybe we could get together sometime.

It sounds like you and your hubby have a fantastic relationship.  

The beast will get easier to deal with.  You've got a whole family here that has your back.  I've found it much easier to deal with the CH since I've been chatting here.  Don't let it take center stage, that's what it wants, to be the center of attention.

Let me tell you a little bit about us since you were so kind to tell us about you.  Phil works for the United States Postal Service.  He has been on medical leave for almost a year now.  I work as a certified nurse aide at a senior living facility.  We have been together for seven years and married for 5.  We are madly in love and we are each others best friends.  We do darn near everything together.  We enjoy the simple things in life too.  Right there with ya on the motorcycle rides.  On Sundays, we very rarely more from our positions in front of the TV since it's football season.  We like to hang out with friends and have a few cocktails and play cards or just sit and visit.  Phil has two children from a previous marriage.  We don't have any children together.  We have two wonderful little shih tzu's, Baxter and Maggie.

I've been totally guilty of losing it in front of Phil.  The latest being on Saturday.  I felt like such a shit.  When I feel the good ole' waterworks coming on I now leave the room.  I'll go start some laundry or I'll go clean the bathroom.

Keep posting to let us know how you're doing.

Love, Hugs and Kisses  :-*

Jen

     

Good Morning Ladies -

I wish I could say that we had a PF night, but that's such a fantasy.  It's funny to look back at what I just wrote and see that I said "we".  I know that we are both going through a great deal, but again, being a mother and nurturer, we seldom put our feelings center stage.  It's such a process of trial and error and we are finding things that can knock the pain back down to about an 8.  Still sounds high, but anything to take off the slightest edge is worth it's weight in gold.

I bought my husband an old fashioned ice bag like the ones you see in old movies and comedies.  It really seems to be helping somewhat.  

I know that you mentioned our relationship with the doctor and frankly that has come into question.  I have scheduled an appt. for a second opinion.  I would like to get O2 to have at home, particularly for the evening struggles.  I guess I just want to know that every base has been covered and we aren't missing out on any new ways to wrangle this beast into submission.  

When we were in the ER this past Monday, I asked our nurse to give him oxygen and she looked at me like I had a lobster crawling out of my nose.  It is so sad to know that they aren't aware of how to treat these and just throw narcotics at him to get him to shut up. Very sad..

Yes, I am in Michigan; I live in Redford.  It would be wonderful to get together sometime.  I think it would be really nice for my husband to meet someone who goes through the same head-banging routine as him.  He is not snapping out of his darkness in between clusters.  It's like that movie "what dreams may come".. If Robin Williams stayed too long in his wife's hell, it would overtake him and he would be lost there forever.  I know that sounds very dramatic, but I never expected to hear my husband pray out loud to die almost nightly.  

I have to also say that this has crept into our intimacy.  I am not going to go into detail as the people who understand already know what I am saying.  I think "Beast" is just too nice a word..

Again, thank you for your support and hope that I will be able to contribute to you and your inner peace as you have contributed to mine.

Warmest hugs,
Kristen  

I have attached a picture of us from a few weeks ago - not too sure if it will come through.

---

What a beautiful couple  [smiley=inlove.gif]

Sorry to hear that you guys had a rough night.  Keep trying different things, you'll find something that works.

Oh, the ER thing really gets me fired up.  One of the nurses that I work with also works at Holland Hospital in ER.  She said that they are finally offering O2 to people that come in with headaches.  So maybe little, by little, the word will get out.  

Good luck at the doctor's appt.  I hope that you can get some O2 at home.  Make sure to ask for a non rebreather mask and a regulator that goes up to 25 lpm.  Keep us posted on that.

My husband has also asked the Good Lord to take him home many times.  It just makes me so sad.  I know this probably sounds bad, but I usually have to leave the room to cry when he says this.

I like to call the beast all kinds of different names.  My favorite is dirty little bastard and some other cuss words.

Hang in there.  You are helping me so much by being here and sharing your story.  

Love,

Jen

It is WE. You feel his pain ,,,no doubt. Hang in there, you are doing a fine job. YOU ROCK.
all the best
thebb

Kristen your doing great Im not a supporter Im a sufferer Flipper/Jen is my better half, these damn CH's are a bitch but your husband will adjust, not just adjust but find some meds that will help.  I truely thought I was the Only one that had this until I found this site so take advantage of all the info here, I've suffered for 15years and some of the things on this site I had never heard of.  Please be strong for your husband suppoters are important.  Keep trying new things and soon you guys will find something that works. Your not alone here if you or your husband have questions or just want to vent feel free to PM,  Skype or email me. You are doing great just to have found this site already.        
               Phil [smiley=smokin.gif]

Kristin, where to start, WHERE to start?

You have brought up SO many topics that I would like to comment on .. I will try to hit them all .. but bear with me, I am old and senile so I might miss some ...

First of all, I see no mention of oxygen, the life saver for so many of us.  In the medical section, pinned to the top section are two threads telling you about oxygen and how to get it, so I won't waste time here, retelling it.

You are a WONDERFUL supporter, but don't fall into the trap of being too nice.  Help him all you can.  Be his backup. BUT, when he needs it, give him a good solid kick in the ass!  Piss him off!  Get him motivated!  MAKE him get off the pity party!  Come on, you are a female ... you wimminz have nagging down to a fine art!  LOL!

Love him, hold him, support him ... But sometimes that support is forcing him to deal with life, and that may require you to place your size seven shoe, firmly, and swiftly, in his butt!

You mentioned how you two enjoy a relaxing sit down, and glass of wine.  Be VERY careful there.  Many clusterheads cannot drink any alcohol when they are in cycle, as it triggers a hit.  Red wine is notorious for being a trigger.  I know it is for me, and I can drink most other types of booze.

The two of you need to find the abortives and preventatives that work for you.  Many of us do not take anything for preventatives, and just use the abortives.  Oxygen is my first line of defense.  I have several big tanks in my house, and I always have my smaller, portable tanks with me in the car or at work.  I am never far from my beloved oxygen.

When the oxygen fails, as it sometimes does, I have Imitrex injections (the pills are almost worthless, as they take so long to work) in my pocket to fall back on.  I am not suppose to take Imitrex, with my heart attack history, but I still do, when I need to.

Maybe slamming down an energy drink, such as Red Bull, at the onset, will give him the relief he needs.

Some get results from strenuous exercise to abort.

Find the one that works for him.

Once you have the abortive that works, then you can get back to your life.  Enjoy and live life to the fullest, while pain free.  Do NOT dwell on the hits.  Dwell on the time in between!  Easier to say (or type) than to do, but it can be done.

Go on that weekend ride.  Go to the movies.  Go out to eat.  Go skinny dipping.  Go visit friends, or even family (if you HAVE to! LOL!)  Go play golf.  Go to the carnival.  Go for a walk in the park.  Go to the rock concert.  Go and do whatever it is that the two of you enjoy doing!

If the beast decides to attack, while you are doing this, no sweat!  Go aside, and deal with the ba$tard, and then get back to what you were doing!  So you missed 5 to 15 minutes of what you were doing.  So what?  Life is not forever, so enjoy it while you are here!  Not everyone gets to be as ancient as I am ... (and yes, I DO remember Moses styling his white hair after mine ... ) (And I could NOT convince Adam not to eat that apple that Eve gave to him ... dern wimminz!!)

So I guess what all this babbling is about is to grab life by the horns and take it for the full ride that you should ... regardless of the beast being in the BACKGROUND!!!  Remember to KEEP the SOB in the background, NOT in the forefront!

I can send you my phone number, if either of you need or want to talk to someone, or to cry on my shoulder, or just to bitch and whine.  I can take it.  No one understands, like another clusterhead!

By the way, what is his first name?  I don't want to call him "Hey you" or "hey, $hithead" (even though that may be your pet name for him)

Anyhow, a hardy welcome to BOTH of you!  Keep up the good work, gal, he NEEDS you!

Chuck, the old geezer

OMG! [smiley=hammer.gif] [smiley=hammer.gif]
Who let THAT old loon loose again????
Did he remember this time not to put his underwear on his head??
If he has a cane with him, trust me, and duck quick!
Jjust......bbbeee....careffffff.ulll!!!!!

LOL>>Chuck's words are dead-bang on(don't tell him I said it), he must be having a moment of lucidity..........oddd......... [smiley=JAW_DROP.gif]

Anywhoo, you two, hope things are beginning to improve...........and Chuck is right........ get theee to some 02!!

Cathi  

Hi Chuck,

I'm glad to meet you and sorry to meet you at the same time.  I wish we all had a different passion in common, but it is what it is.

I really appreciate your kind words and for reaching out.  I have received so much support from everyone here that it overwhelms me.  I sat in a ball of tears reading the stories and letter to us.  Our friends and family don't get it.  The doctors don't get it and the lunatics in the ER treat us like my husband is crying just because he has a "headache".  We are on our second neuro.  My hubby (Jeff - BTW) has had MRI's, MRA's, CT scans, a spinal tap and endless blood work with a final diagnosis of CH.  

I requested oxygen in the ER and they looked at me like I was nuts.  It did seem to help, but I am assuming they gave him the lowest possible ppm they could not to waste it on a "headache".  We have another appt. scheduled for this Wed. to discuss getting O2 and maybe a new course of treatment.  Lyrica and Prednisone are not working.

It has been really hard to be supportive and not feel like I enabling him to sink into depression because his life is so out of control.  I was trying to do everything I can to make his life great; during or after a CH.  I haven't pushed him - until last night.  I gave it to him between the eyes (with lots of love) about how he is letting the demon win and that he needs to embrace life once again.  He needs to start getting back to his old routing and do the things he loves.  He can't center his life around this because if he does, it will consume him and us.  Needless to say, he didn't like hearing it and it turned into an argument about how I am not being supportive.  I have been nothing BUT supportive.  I don't cry in front of him, I completely take care of his every need, with a smile and a hug.

I left for work this morning wanting to just keep driving.  It is such a low point for us as we were so content and so happy with our life 6 weeks ago.  I just want to scream and cry and collapse into a pile of tears at what this is doing to both him and I collectively and individually.

Thanks for all of your suggestions and we will give each one of them a try as we are desperate.

Warmest hugs,
Kristen

Hi Phil,

Thanks for the great email - your better half is beyond awesome!  She is very genuine and you seem to be as well.

Hubby is pretty much is the same spot you were in feeling like he is the only one.  He is not ready to post yet, but asks me everyday what's new with everyone.  I think he has this notion if he logs on and sees that everyone is exactly the same as him; that it will be too much reality.  Does that sound weird?

Anyway, I'm sorry that we have to meet under these circumstances, but people come into your life for a reason - you don't question it, you just roll with it.

Thanks Phil; keep in touch!

Kristen

Kristen, what you did last night to Jeff, probably needed to be done.  I am sure he is an awesome person, but he is so low now, that he can't see that you are doing what HAS to be done, and done with deep and abiding love.

Now, I suggest, laying off the storm trooper part for now, and get back to the cuddle bunny that he also needs.  Let Jeff digest what you told him last night.  Only you can decide which hat to wear, at what time.

Just make SURE that he knows, in words and actions that you DO love him, and are trying to help.

Your tasks, as a supporter, are SO much harder than ours are, as sufferers, yet your part is SO critical to Jeff's surviving this with any sanity at all.  Maybe that is why I am totally nucking futs, because I do not have a supporter living with me. (Do ya know any cute, hunky stud muffins you can introduce me to?  LOL)

Remember, he needs you, and from what I have read, so far, you are doing an amazing job!  Keep it up!

Ok, this old queen will crawl back into my hole, before that nasty, PMSing, annoying, nagging Cathi wench starts in on me again ... She just likes to see an old man cry ... [smiley=bigcry.gif]

Chuck

Kristen...
Check your PM's....I've had a couple thoughts.......... ( [smiley=stfu.gif], Chuck   ;);D)

Jackie

LOL! Chuck has been known to go to some GREAT lengths to abort a hit.....haven't you, Chuckles??????????????? Here's a hint-"winkie").

Kristin, I'm thinking a call to your Dr is in order.......please tell them Jeff wants to try 02, and, if they balk, begin by sending them the info on the left.   I also(ohh, the sky is gonna fall!) agree that old cluster curmudgeon above. You've laid it out, you've told him ehat he needs to hear, now he needs to digest it.
More than that, now you need some time to calm down. I'm glad you're at work. maybe lunchtime, you'll take yourself for a pedicure or something, get a good book to read, spend time laughing with friends-something that reminds you life is NOT lived with the beast!

I also encourage Jeff to get online here! It WILL HELP!

Anyhow, anything you two need, just say the word!

Cathi

Jackie wrote on Oct 3^rd, 2008 at 1:09pm:

( [smiley=stfu.gif], Chuck   ;);D)

[smiley=bigcry.gif] [smiley=bigcry.gif]

<singing> (VERY badly, so I have been told)  "Why's everybody always pickin' on me?"

Jackie, if I didn't luvz ya so much, I'd hate ya!!! LOL

SMOOCHIES,  [smiley=hug.gif]    [smiley=inlove.gif]   [smiley=hug.gif]  Dahlink!

You're doing just fine, Kristen--and Jeff is as well, whether or not he knows it yet.  Learning to live around CH isn't the easiest thing in the world.  It's frightening to watch, and terrifying to experience--especially early on.

Keep listening to the good advice the others here have been giving you.  Learning what works for each individual can take some time and tinkering, but eventually you (and he) will find a way to live with it.  You'll discover just what he needs from you when he's getting hit, and he'll discover the best methods for terminating an attack, or getting through one.  

Believe it or not, learning to control ones reaction to a hit is as important as any medication.  We all learn to do that after a while, but it isn't easy, and it takes some time.  Jeff will get there.

Around here, most folks just step around me when I'm getting hit.  (Well--maybe that's a bit of an exaggeration, but nobody gets too worked up about it.   ;) )  

I'll second (or third) the recommendation for oxygen.  Get it any way you can--it's made a huge difference in the lives of many, many people here.

All the best to you and Jeff,

George  

 

Quote:

Jackie, if I didn't luvz ya so much, I'd hate ya!!! LOL

 Yah.....but ya luvz me...... :)

Kristen....wondering what it would take to get Jeff in to see Dr. Todd Rozen, MHNI, Ann Arbor.  He's a good CH doctor.  Could Jeff's doctor, perhaps, consult with him?  

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Well damn...link doesn't seem to work.


Let's try this......START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Todd D. Rozen, M.D.
Dr. Todd Rozen, a board-certified neurologist, is Director of the Headache Division at MHNI. Dr. Rozen completed medical school at the State University of New York Health Science Center in Brooklyn and his neurology residency at Mayo Clinic in Rochester, Minnesota. He subsequently completed a headache fellowship with Stephen D. Silberstein, M.D., in Philadelphia and was an attending neurologist at the Jefferson Headache Center for three years. Dr. Rozen then became Director of Headache Research at the Cleveland Clinic Headache Center at the Cleveland Clinic Foundation. He has written numerous journal articles and book chapters on the subject of headache and is the co-author of two books. Dr. Rozen is a reviewer for several journals including Headache, Cephalalgia and Neurology and is assistant editor of the headache section for Medlink Neurology. He is a Clinical Associate Professor in the Department Of Neurology at Wayne State University. He has lectured on the subject of headache in both the United States and in Europe. Dr. Rozen has a special interest in cluster headache, trigeminal autonomic cephalagias, mitochondrial dysfunction in headache, prolonged auras, and new daily persistent headache.

Hi Jackie!

Just made an appt. for the 13th for hubby.  Actually, they wouldn't let me make the appt. they would only talk to him.  Nonetheless, he will be there then and was told to plan on being htere the whole day.

Thanks so much for the referral!!!  :-* [smiley=hug.gif]

Hugs and kisses!!!

Kristen

Hi Kristen.  You keep hanging tough girl.  You guys are going to get through this.  Sometimes you have to do the tough love thing it sucks, but that's what they need sometimes.

I know you said Jeff isn't ready to get on the boards yet, but keep encouraging him to do so.  It really did Phil a world of good.  Even if he just starts out by reading some of the posts, he'll find that this is a really fun bunch of people.  It might provide him with a distraction and some comic relief.

There are times when you are going to break down and cry.  Try not to do it in front of Jeff (I've failed at this many times).  Sometimes a good cry will make you feel better.

Remember, we're always here for the both of you.

I hope that your day has gotten better.

Big Hugs  [smiley=hug.gif]  

Jen

Thanks Jen; I wish you were here  [smiley=hug.gif] to give a big too! I feel like I have known you guys for years!

Yes, the day has gotten better; thanks for asking.  I had to regroup and get it together.  I am in a better place to deal with this.  I am guilty of crying in front of him.  It was only one time and there was NOO stopping it.  We were in the ER this past Monday and he was crying so hard asking for O2, pain meds, etc. and no one was listening.  He mentally went to a dark place and reached his breaking point with the pain.  I leaned over him with my head on his and we both cried like kids.  I guess it was good for both of us.  It will be the last time I do that.

Anyway, I am going to try to get him on tonight.  I think the more he empowers himself and communicates how he feels, the better.  I want him to read the stories and take it all in.  I completely beieve there is power in information!

So, how is everything going in your corner of the world?

Kristen

Hi hun.  Isn't it weird just by chatting like this we feel that way.  I feel like I've known you forever too.

Don't feel guilty or beat yourself up for crying with him or even in front of him.  It will happen again, sometimes you just can't help it.  I've been there too many times to count.  Sometimes after Phil and I have cried together, I feel the closest to him.  It sounds weird doesn't it?

I so agree with you about communicating how he feels.  There are many things that I didn't know that Phil was feeling until he started posting here.  Jeff can let it all out here and get some much needed support from other sufferers.  The stories aren't always pretty, but he will know that he's not alone.  

There's not much going on over here.  I just got up about an hour ago (I worked last night).  We don't have any plans.  We're just chilln' right now.  We might go out and grab some dinner, but that's about it.

Hugs,

Jen    

IT'S THE CLUSTERHEAD MUTUAL ADMIRATION SOCIETY! I LOVE IT!@

I really think you should get in the car adrive somewhere to meet......I have NO clue what your proximity is to each other, but, I think you need to meet!
Kristen & Jen, you two are doing SOOO well.....you are worth your weight in GOLD! I know your men know this, and they're gonna keep on trying to fight!
At the very least, find time to talk to each other. It ALWAYS  helps to know you're not alone.
Great Big hugs to BOTH of you,
and PF wishes for your men!
Cathi :-*

You are so awesome Cathi, I don't care what Chuck says.  I just love ya.  Kristen figured out that we are only about 3 hours away from each other.  We are going to get together for sure.  We've also been pming each other.  It really does help to know that we're not fighting the battle alone and that others are out there fighting the battle right along side of us.

Hugs,

Jen      

Jen & Kristen...

You gals are doing good!!!!!  So proud of you both.

Good job on the doctor appointment, Kristen.

Blake & I are only an hour south of Kalamazoo.  Jen & I have talked about getting together too.  Maybe we can all hook up before the snow flies.

Love to you both,
Jackie

Quote:

You are so awesome Cathi, I don't care what Chuck says.

  It is all in fun, I assure you.  Both Cathi and Chuck think the world of each other.  

I am so proud of both of you ladies.  Meeting up with another clusterhead for a sufferer...is an awesome experience.  Most of us have made life-long friendships here.  I assume it will be that way for supporters as well.  If you get the chance to meet each other...DO IT!!!!!!!!



Quote:

It will be the last time I do that.

  Why?   Crying is cathartic.  




Linda

Hi Jackie.  You rock.  We better get some plans and do it quick.  That nasty white shit will be here before we know it.

The only thing I have going is that I have a wedding next Friday night.  Other than that our weekends are always open.

Hugs,

Jen

Linda_Howell wrote on Oct 3^rd, 2008 at 6:01pm:

Quote: You are so awesome Cathi, I don't care what Chuck says. LOL! NOOOO!  Chuck is the devil incarnate! He's mean, nassty, smells bad, he picks on me, and.........and.I know there's more! Oh, yeah, he looks better than I do in a pink thong and heels! :P Ptooie! I spit on his walker! :-* But, Linda is nice, she is the peacekeeper, and such a caring lady!   It is all in fun, I assure you.  Both Cathi and Chuck think the world of each other.   Do NOT!  Ptooie, again! :-* Linda

Cathi ;D :D

::)

Cathi, I HAVE to be nice to him for about 11 more months.  I only slipped once since July and had to start all over.

  But what you said above????   ROTFLMAO!!!!!!!!!!!!!!!!!!!!!!

I know it's all in good fun and I'm lovin' it.  I am just sitting here laughing my ass off and Phil is looking at me like I'm a total idiot.

I've never met Chuck, but the thought of him looking better than you in a pink thong and heels, just made me throw up in my mouth a bit.  LOL!!!!!!

Thanks Linda for your kind words.  I don't know what I did before I logged on to this site.  I've never met anybody in person yet, but I feel like I've made some great friends already.

Love ya all,

Jen

here ya go Jen.   Just a FYI....A lady named Jayne and I both play pool.  In order to raise $$$$$ for OUCH we had a grudge match at the Nashville conv.  Right in the middle of it Chuck shows up.  The rest is history and will be forever in ALL of our minds.  



Page #9



   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

OMG.   ;D  That is hilarious.

OMG!!!!!!!!!!! [smiley=spit.gif] [smiley=ugh.gif] [smiley=yikes.gif] [smiley=wtf.gif] [smiley=hurl.gif] [smiley=hurl.gif] [smiley=hurl.gif] [smiley=hurl.gif] [smiley=hurl.gif] [smiley=hurl.gif] [smiley=hurl.gif] [smiley=hurl.gif] [smiley=hurl.gif] [smiley=hurl.gif]
            iactuallylookedagain.....................


EUUUUUUWWWWWWWWWWWWWW!
Cathi :D

Too much laughing for you for one day, Jen... but remind me a bit later to post Chucks ah...um...er....not so great-of-an-idea to abort a CH.


LMAO!


By the way....please show this thread to your husband.  Laughter is good.  ;)

Cathi, I looked more than once too.  WTF is wrong with me.  ;D

I showed to Phil when he was trying to abort.  Probably not the best time to so him.  When he's feeling better I'll tell hime to look at them then.

I gonna hold you to that Linda, if it's anything like those other pictures I'm sure it's gotta be good.

Hugs and Lots of Laughs,

Jen

OMG! I'm dying over here reading these posts!  I LOVE the one about Chuck and the thong!!!

Hubby has been reading as well and is slowly coming around. YAA!  He is very grateful to all of you that have held me up for the past couple of days.  It has meant more to me than I could ever express.

I would love to get together - we should try to set something up before the white shit arrives  [smiley=yikes.gif]

Thanks for the laughs ladies - ur the greatest!

laughs and hugs,
Kristen

           ;)

I'll give ya a day or two to compose yourselves before I post what I told you about.

  Hang tough ladies.  Both of you.   You'll make it,  and so will your men.  I've been chronic for more than 21 years.  I'm alive and I still have my sense of humor.   ;D

Linda_Howell wrote on Oct 3^rd, 2008 at 7:18pm:

remind me a bit later to post Chucks ah...um...er....not so great-of-an-idea to abort a CH.

HEY!!!

Linda, are you PICKING on me ?? ?? ??  AGAIN ?? ?? ??

You PROMISED to be nice to me for ONE FULL YEAR!!  I should have know that a mere female, blond and left coaster at that, couldn't keep it up for one year!

HARRUMPH!!

Chuck, with the hurt feelers ...

(But, you will have to admit, my method DID work to abort a hit!  Not that I have tried it again.  Not sure my winky could take another attempt.)

Oh Chuck, I'm just gettin' to know ya and I think I love ya already.  I'm sorry if we're hurtin' your feelers.

Big Hugs  [smiley=hug.gif]

Jen

Oh...not at all Chuck.  I am being the most kindest I can be at this moment.   YOU posted your um...abortive methods and I thought these 2 ...as well as their husbands, could use a laugh right about now since they're going through that " awful stage of why me...I'm so depressed, there's no hope"...you know, the place we've ALL been?


I know you'd be the 1st. person to laugh at yourself, as I am,  about MY silly & stupid things I've done,  or thought.

Chuck I have the upmost respect and admiration for you.  You are a man among men.  A pillar of your community.  A work-a-holic, a caring and wonderful father to at least 2 of your kids that I've met, A man who understood and listened to me on more than one occasion about a subject other than CH.

Nope, you will not at all hear anything bad from me until at least August of 2009.   Maybe not even then.   :-* :-* :-*


But maybe tomorrow  will post your Mr. Winky story.  In hopes that these 2 new husbands can see the humor in CH...and learn to live with it.   With all of our help around here, I see it as a win-win situation.


Luinda  ;)

haha..Neener, neener, neener! Linda has to be NIICE, and III donnn't!!

Chuck you are my favorite putz, does that help? That's as nice as I can get! :P

(That's only coz Linda told me to be nice!)

Cathi, the terror! :P

I HAVE to hear the "winky" story!  I have been looking but can't find it.

As you can see it's late and hubby is in dealing with the devil.  I hear them wrestling and it sounds like the he losing  [smiley=bash.gif]

ugghh...

XO

kristen

Oh Kristen.  I was still awake at that time last night.  Too bad I wasn't online.  Hopefully hubby and you got some sleep last night.

I think Linda is going to tell us the story of Mr. Winky today or tomorrow.  I can't wait.  It sounds like it's going to be a good one.

Hugs,

Jen

Here ya go, ladies.  Enjoy!

 
Quote:

Why my WINKY ?? ?? - Updated « on: Jun 23rd, 2005, 1:08pm »  Quote  Modify   -------------------------------------------------------------------------------- Ok, I know this is a caring and compassionate group, and we can relate things without any snide, or uncalled for remarks.  RIGHT ?? ??  I know Drummer posted of his, somewhat similar, unfortunate experience, a long time ago.  He spoke of needing a safety kit, to protect himself.  He may be right. As you all know, I get hit fairly often.  Many times, if I am downstairs in the living room, and there are visitors here, when I get hit, I grab my oxygen mask and then run into the half bath with it, so I can be in privacy.  Many times I sit on the throne and bounce and rock around.  In doing this, I cracked and broke the toilet seat, in the front, so that there is a split, and with pressure, it opens up.  I have been meaning to replace that seat.  I AM GOING TO DO THAT TODAY !! !! !! WELL, let me relate what happened today.  A co-worker stopped by to see how I am doing, as I have missed so much work, of late.  I just had on a pair of gym shorts, as I had not gotten dressed yet.  Naturally, the beast made a call.  I turned on the oxygen, grabbed my mask and made a bee line for the bathroom.  While in there, I felt I had another bodily function to do, so I dropped my drawers and sat down.  I did what I had to do, but continued to sit there, rocking, while dealing with the beast. While rocking, I slid forward on the seat, the gap opened up, and YUP, my dangling “best part” got into that gap, and when I rocked, it pinched it, HARD !! !! !!  Well, I jumped up, screaming, and when I lifted my weight off the seat, the gap closed completely, with a VERY important part of me still in it!  When I jumped up, and the gap closed, the seat proceeded to rip a hunk of skin on my poor ole winky.  I started to jump around holding my injured part, and proceeded to trip on my shorts, that were at my ankles. That caused me to fall into the door, causing it to fly open, smashing my nose, and falling out into the kitchen. So there I am, rolling, naked, on the floor, screaming, with one hand on my groin, covered in blood, the other hand on my nose, also covered in blood, with my co-worker staring in absolute horror at me, trying VERY hard not to laugh, not knowing what to do, as he has been warned, DO NOT GO NEAR ME, OR TOUCH ME when I am getting hit !! !! !! I think my winky is out of commission for a while ... Like it makes a difference ... The good thing is, during this process, the beast left.  The problem is, do I think I could repeat this procedure several times a day, to kill a hit?  Hmm mm mm ... I am not sure I want to try it again. Where is that safety kit? Chuck PS:  I KNOW not one of you are going to laugh at me, ARE YOU !! ?? !! ?? EDITED to give credit to Drummer, not Hub.  Thanks. Linda!

Yup, Linda actually went there, and posted that.

Linda, do you remember the very first words I spoke to you, the first time we met in person?

To refresh your memory, it was something like this:  "Who the fuck are YOU?"

Well, to use those words, again, "Who the fuck are you" to post such a personal and private experience (that was told in the strictest of confidence, to a select few), as that one is, without posting Drummer's experience?

Oh the shame of it all!!! [smiley=bag.gif]  I will never be able to show my face again !!!

[smiley=bigtiny.gif] [smiley=blush.gif] [smiley=crackup.gif] [smiley=embarassed.gif] [smiley=crackup.gif] [smiley=finger.gif] [smiley=crackup.gif] [smiley=hammer.gif] [smiley=crackup.gif] [smiley=moonwiggle.gif] [smiley=yikes.gif]

OMG Chuck.  That had to be sooooo painful.  That is awful.  I hope that your winky is ok now.  I don't think that Phil will try that anytime soon to abort a hit.  I still love ya.  Hopefully you do show your face, I can't wait to meet you some day.

Hugs,

Jen  

What a holy $#%^%$# nightmare!  Sorry to hear about Mr. Winky; you gave Jeff and I a hearty laugh - not at your expense, but at the sheer craziness that ensued in a matter of minutes at the most inopportune time  [smiley=moonwiggle.gif]

I also wanted to share with everyone that we got an O2 tank today!!!! WOO HOO!!!!  [smiley=2vrolijk_08.gif]

Hope all is well with everyone!

hugs!

Kristen

That's awesome that you got the O2.  Hopefully that will give Jeff some relief.  Let us know how it works out.

Big Hugs  [smiley=hug.gif]

Jen

I want to introduce myself to everyone.  I am Jeff, Kristen's better half!

Just wanted to say hello and thank you for all of the great messages.

Jeff

Hi Jeff  [smiley=wave.gif].  Welcome to the family.  I have enjoyed chatting with your better half.  You have one heck of a supporter there.  

My husband Phil (CH-HELL) has had clusters for 15 years.  The last 3 years he has been chronic.  He felt like he was alone.  Then we found this website.  This site has been wonderful for both of us.  I'm sure it will be the same for you and Kristen.

There is so much knowledge here.  Read all the tabs to the left and check out the OUCH website.  If you have any questions just ask.  Everyone here is willing to help.

Big Hugs  [smiley=hug.gif] and hopefully you get some PF time soon.

Jen

Chuck?  You're kidding right?  You posted that on the gneral board and anyone could see that.  Here is Drummers:

OK, since I have gotten to know you people over the course of the past several months, I think I can now open up and bare my soul to you; so to speak. I trust you guys. Anyone who doesn’t suffer from cluster headaches or supports someone who has clusters; please close this window right away.

Okee Dokee. Now that we are alone, I shall bare my soul. I’ll start at the end of my story, then jump to the beginning and then work my way to the end again. I am trusting that none of you will laugh, make fun or talk about me behind my back. I trust that you will keep this, “our little secret”.

My wife has just purchased me a cluster headache “safety kit”. (This is the end of the story). The kit contains, one pair of safety eye goggles, a jock strap with cup and a small flashlight.

Now. The beginning of my story. Like some of you, I have been getting my cluster attacks at 3:00am. This is a bad time for me because usually I am sound asleep. My mental sharpness is somewhat dull at this time in the morning.

My normal procedure for dealing with a cluster headache is to simply swallow two Ercaf pills, then turn my Oxygen tank to the “on” position. I then take the Oxygen mask, which I keep hanging on the tank for easy accessibility, and place it on my face and breathe, rock my body and quietly moan while sitting on the sofa in our living room. The Oxygen mask is fitted with a convenient elastic band to hold the mask in place on my face. This leaves my hands and arms free to flail about and hit my head and bang on the coffee table. I have performed this simple routine approximately, 8,286 times in the past 15 years.

Well, the other day at 3:00am, this simple routine took a turn for the worse. I was rudely awakened by the Demon in my head. This caused me to jump from the bed, naked, and run down the stairs to my Ercaf and Oxygen. Swallowing the Ercaf did not pose a problem. It was my fight with the Oxygen tank and mask that was quite unsettling. You see, I had no problem turning the Oxygen on. But, I had some difficulty grabbing the mask from the tank.

It seems that the elastic band on the mask got stuck on the handle of the Oxygen tank. I don’t know what it’s like at 3:00am where you live, but where I live it’s really, really dark. I couldn’t see and I really didn’t have time to fully assess the situation with my stuck Oxygen mask. I couldn’t figure out why the mask didn’t want to be placed on my face. So, I just pulled as hard as I could. I now realize that this was a mistake. The elastic band, rather quickly, came unstuck from the Oxygen tank. The elastic band rebounded off the tank and snapped “Mr. Winky”. This is the name I have given to my “you-know-what”.

I’ve found that whenever “Mr. Winky” is injured it causes me to double over fairly fast. Doubling over on this particular day caused me to poke my eye on the Oxygen tank’s handle. The pulling of the mask also made the little plastic tube that joins the tank with the mask break free from the mask. The mask had now become useless. Being rather resourceful, I immediately shoved the tube into my left nostril and found my favorite place to sit on our sofa. My hands that are normally free to flail about were now used to hold “Mr. Winky” and my right eye.

I guess I made quite a commotion. My wife, who knows not to visit me during a cluster headache, now, paid me a visit. Seeing me naked on the sofa with an Oxygen tube in my nose and holding “Mr. Winky” with one hand and my eye with the other, caused her to ask me, “What are you doing”? Still suffering the cluster headache, I had just enough energy to lift my head and politely grunt. The next day my wife purchased me the Cluster Headache Safety Kit. I think I now deserve to be a member of O.U.C.H.

Linda_Howell wrote on Oct 5^th, 2008 at 11:00am:

You're kidding right?  You posted that on the general board and anyone could see that.

Linda, of COURSE I am kidding!  (SHEESH!!  Damn left coast blond wimminz!)

I am the first to laugh at the dumb, stupid stuff that I do!  I laugh first, cuz I know you demented sickos just sit and wait for the opportunity to point and laugh at me!  That way, I get the first laugh!

Chuck

Jeff C. wrote on Oct 4^th, 2008 at 10:18pm:

I am Jeff, Kristen's better half!

Hi Jeff!  Welcome to the insane asylum family!!!

You SAY that you are Kristen's better half ... PROVE it!  Who has the cuter buns?  Hmmmm???

When I meet the two of you in person, I will have to squeeze each of ya, and figure out.  After all, I am the OFFICIAL ass groper to this site!  (Don't let that old, past her prime, broad, BarbaraD tell you any different)

Chuck, the groper

Oh great Chuck.  Way to make sure Jeff will NEVER...EVER attend a get-together.  

Jeff....we'll protect ya!

I was thinking the same thing Linda.  I bet Jeff's not scared.  Although he might punch Chuck's lights out if he grabs his ass.[smiley=bash.gif]

In that case, I'll have to protect Chuck.  Cause I love him dearly and don't want to see him hurt.  

   My work is never done around here.  Sigh...

Linda, SOOO much temptation!!!  It makes me wanna..oh, I dunno.......do something really crazy... like, be nice to Chuck myself?? NAWWWWWWWWWWWWWW!!!!!!!!!!!!!!!!!!!!!!!!

Jeff, it's kinda great to welcome you.......wish you didn't have CH, but you have certainly landed in the best place for help in dealing! The people here are strong and supportive and caring...and funny as all getout, too!
LOL..to 'splain my relationship with Chuck.well... he's the BIG(as in older.......... muuuuuuuuuuch older) brother I never had. It's my pleasure to poke fun at him, but if anyone ever hurt him, I'd be upside their backside in an instant! He and Linda are a deep well of experience and information on coping with this affliction, but that is secondary to their generosity of time, love, and soo much more!

I've prolly said enough, and Chuck will be back to reinforce that.

I wish you ALL PF.....and, since I was there when Chuck was helped with his 02, I'd like to be available to help you as well. Chuck was resistant to 02, till my other dear friend-Norwegian bro Svenn, helped him.

Cathi

Welcome Jeff hang in there try every thing and dont quit trying you will find something that works.
 I must say you and  Kristen must be the coolest 8-) newbies here I dont think I have had 60 replies on all my posts combined.
    Phil

I was just kidding.  I don't know Jeff so I don't know if he would hit him.  Sorry Jeff, I didn't mean to throw you under the bus!!!!!!  

Phil, When I reply to something, I could very well veer offcourse..I tend to hijack threads at times- my bad-, but, in this case, this thread has been all over the place! It's most certainly not all about Jeff and Kristin.... in fact, somehow, since you both came online at pretty much the same time, right now, you are interchangable in my eyes! Your sitches are quite similar, your wives have been soo open and nice, you and Jeff finally came online.........so, when I post to ONE of your threads, I am actually posting to BOTH couples!
All 4 of you have been simply awesome-ESPECIALLY under the circumstances!!
You're all part of this great, wild, wacky family, and you'd best stick around!

SOO....to Jen/Phil-Flipperlips/CH_HELL, Kristen/Jeff, Kristin/JeffC....welcome, pull up a chair and settle in....you're all welcome and a pleasant addition!

Cathi :D :D

Cathi_Pierce wrote on Oct 5^th, 2008 at 3:25pm:

SOO....to Jen/Phil-Flipperlips/CH_HELL, Kristen/Jeff, Kristin/JeffC....welcome, pull up a chair and settle in....you're all welcome and a pleasant addition!

Now, if we could just get rid of that Cathi broad ...

There's no way in hell I would get rid of Cathi.  Sorry Chuck.  She is one of my angels.  I need to keep her around.  [smiley=engel017.gif]

Lippiegirlie- :-* :-* :-* :-* :-* :-* :-* :-*

Chuckles-BITE ME! >:( >:( >:(

Love,
cathi :D

Right back at ya, babe, with some hugs thrown in for good measure. :-* :-* :-* :-* :-* :-* [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Welcome aboard, Jeff.  Buckle up and hang on...sometimes it's a wild ride.   ;)  

Best wishes,

George

Welcome Jeff,
You dont want to see Chuck in a thong. Believe me. Sorry Chuck! What a world.
Ride on, ride safe
thebb

Hi Jeff.....welcome.

I'm wondering if you've tried the 02 yet.  

Sorry if I missed the answer in an earlier post.

Again.....welcome to Clusterville.  Sorry you have to be here but being a cluster head it's the best place for help and support.

Jackie

Kristen C. wrote on Oct 2^nd, 2008 at 9:17am:

It's like that movie "what dreams may come".. If Robin Williams stayed too long in his wife's hell, it would overtake him and he would be lost there forever.

Wow - I haven't thought about that movie for years - and how appropriate it is to the beast.

Hi Kristen!  I'm late coming into this thread and I apologize.  I'm married for 26 years and the beast has been around for 17+ of those years.  We are in a pain free time right now and I'm feeling mighty blessed.

I know it's hard for hubby to realize, but there will be times like this for him, too!  Hell, I know clusterheads who are still waiting for the next hit and it's been YEARS!!!!  The difference is that while they wait, they LIVE.  That's the secret.  It sounds easy, but it's not.

We've taken the O2 out of the living room, the energy drinks are in the BACK of the fridge, and my hubby takes only a handful of pills (rather than two fists-full) daily.  

Will the beast return?  Probably.

What to do in the meantime?  Live, laugh, love, entertain, and enjoy life.  It's the only way to beat the beast.  If the fear paralyzes your hubby, the beast wins.  There are plenty of times that the beast brings pain and fear and loathing and withdrawal.  The pain free times are the joyous times to be shared and enjoyed.

We're here beside you all the way.  Why?  Because we KNOW.  We just do.

George wrote on Oct 5^th, 2008 at 11:22pm:

Welcome aboard, Jeff.  Buckle up and hang on...sometimes it's a wild ride.   ;)

Oh honey - you said a mouthful!!

Despite being slightly twisted and undeniably strange, the clusterheads I've met and grown to love are the best people on the planet.  They are geographically diverse, but united against the beast.  

I remember my first convention and watching someone other than my hubby get hit.  It was devastating.  My hubby getting hit was "normal" for us, but then I'm surrounded by people in various stages of a hit  . . . . and it was all so "normal.  No one made a scene or called an ambulance or fell apart.  They just helped.  Helped the clusterhead ride it out and then back to the fun.

While I will never thank a deity for the beast, I thank my deity everyday for the folks I've met because of the beast.  I even give thanks for Chuck and his kilt!

Quote:

I remember my first convention and watching someone other than my hubby get hit.  It was devastating.  My hubby getting hit was "normal" for us, but then I'm surrounded by people in various stages of a hit  . . . . and it was all so "normal.  No one made a scene or called an ambulance or fell apart.  They just helped.  Helped the clusterhead ride it out and then back to the fun.

You cant buy that anywhere.
good post
thebb

HI everyone - sorry for not keeping up on our messages  [smiley=frown.gif]

It has been a really bad couple of days, actually more like a week.  Hubby has been semi PF, but it has pretty much overtaken him.  I am trying to get into his spirit and remind him of life and how great things used to be.  

He only posted to appease me (I think).  I have tried to print out and read him your postings, but he is pretty much unreachable.  Please know that I appreciate all of them and hopefully Jeff will too very soon.

We do have the O2 tank, but it's not the hits that are causing the problems, it's the fact that he has this to deal with.  He keeps saying he was so healthy before and never had to take medication for anything and now this has debilitated him.  I keep telling him it is only debilitating if you let it be.

The side effects of the medication are a little more than he can handle.  They are so ravaging on the mind and body that he doesn't feel like himself and is usually "looped" out.

It is hard to be greatful for anything at this point because of these CH, but I am grateful to you ANGELS  [smiley=engel017.gif] who have listened and supported me and made life a little easier when I didn't think it could be..

Love to you all,

Kristen

Kristen...

What meds. is he on.....if you've posted this before, forgive me for asking again.  Some meds. can cause other problems....sometimes emotional ones and some depression.

Hang in there, Sweetie....it does get better.

Love & Big Hugs,
Jackie

Hi Jackie,

He is on Lyrica and Prednisone...uugghhh...Not good.

How are you doing?

Talk soon!

Kristen

Kristen...
Oh yes, now I remember.  Those can cause some depression, feelings of ill will, etc.

You'll be seeing Dr. Rozen soon right?

Jackie

Yes on Monday.  Seeing another neuro tomorrow.

Keep your fingers crossed!

Kristen C. wrote on Oct 7^th, 2008 at 6:47pm:

Keep your fingers crossed!

Oh, I have been, Sweetie......good luck!!

Much Love,
Jackie

Quote:

You'll be seeing Dr. Rozen soon right?

Killer, I'm jealous. I think that would be my wish choice for neuro's, right after Goadsby.
all the best
thebb

PF, but it has pretty much overtaken him.  I am trying to get into his spirit and remind him of life and how great things used to be.  

He only posted to appease me (I think).  I have tried to print out and read him your postings, but he is pretty much unreachable.  Please know that I appreciate all of them and hopefully Jeff will too very soon.

 I keep telling him it is only debilitating if you let it be.

The side effects of the medication are a little more than he can handle.  They are so ravaging on the mind and body that he doesn't feel like himself and is usually "looped" out.

Kristen dont take this the wrong way but as a supporter you need to support him, dont pressure him to do things.   CH is debilitating and the point he is at right now he needs your support just be there for him, you dont have to tell him things like "its only debilitating if you let it be" this will probaly just upset him.  When he gets the proper meds witch he soon will when he sees Dr. Rozen, but it takes time and different tries on other meds.  When he finds the right meds and hes pf then he will be able to hear you but until then its best just to be there for him and not pressure him.  Depression is a bitch and it is understandable in his case it will take some time to deal with this but it will pass.  
  I truely wish you both the best hang in there it does get better.  If Jeff doesn't want to post but would like to talk to someone pm me and I'll give him a call.      Phil

We are hoping that they will listen and be more knowledgeable about CH.  No one seems to really understand.

Thanks again everyone!

Big hugs and kisses  [smiley=hug.gif] [smiley=kiss.gif]

Kristen

Phil,

I understand what you're saying about not pushing him and I don't think I have.

Jeff is my life and I would not do anything to push him into a place where it upsets him.  I don't say anything to him out of anger.  That isn't something I said and walked out of the room.  It was part of a whole conversation about our life, future and his emotional well being.  

Thanks for the post.

Kristen

Dr. Rozen will understand. Dont worry. We all know what you guys are going through. You can do it. I said.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
all the best
thebb

Remember, you have my phone numbers.  Don't be afraid to call me, either one of you.  Sometimes it helps to talk, one on one, to someone who truely understands where you are at.

Besides, I have been told I have a good shoulder to cry on.

Chuck

Kristen,  I know you're going to do this, but just in case, please discuss Jeff's immersion in CH, and how he pretty much fears leaving home.
Right now, the beast is running his life. In time, Jeff will take BACK his life, and CH will be powerless and unable to consume him as it does right now.
SOOO glad you're meeting with Dr Rozen today. Please let us know how it goes!
Cathi :-*