Click this link to read a post I like on the clusterheadaches.com message board...

May 17^th, 2024 at 1:30am

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!

New CH.com Forum › Supporter's Corner › Supporter's Corner › Powerless to help..

(Moderators: Margi, DJ, Mrs Deej)

‹ Previous Topic | Next Topic ›

Pages: 1 2 3 4

Powerless to help.. (Read 15946 times)

Kristen C.

CH.com Newbie

Offline

Posts: 19
Michigan
Gender: female

Powerless to help..
Oct 1^st, 2008 at 9:47pm

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...

It's never too late to have a happy childhood..

IP Logged

Click Here to visit the CH.com Facebook page!

Cathi_Pierce

CH.com Alumnus

Offline

I love YaBB 1G - SP1!

Posts: 1191
x0|Oregon City|USA||0|0|OR,Oregon
Gender: female

Re: Powerless to help..
Reply #1 - Oct 1^st, 2008 at 10:06pm

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 Cheesy

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

IP Logged

flipperlips

CH.com Alumnus

Offline

Live, Laugh, Love

Posts: 935
Mcallen, TX
Gender: female

Re: Powerless to help..
Reply #2 - Oct 1^st, 2008 at 10:19pm

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 Grin

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 Kiss

Jen

Only one life.....only one chance to make the moment count for something - Racer1_NC

IP Logged

Kristen C.

CH.com Newbie

Offline

Posts: 19
Michigan
Gender: female

Re: Powerless to help..
Reply #3 - Oct 1^st, 2008 at 10:46pm

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

It's never too late to have a happy childhood..

IP Logged

Cathi_Pierce

CH.com Alumnus

Offline

I love YaBB 1G - SP1!

Posts: 1191
x0|Oregon City|USA||0|0|OR,Oregon
Gender: female

Re: Powerless to help..
Reply #4 - Oct 1^st, 2008 at 11:10pm

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 Cheesy

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

IP Logged

Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Powerless to help.. Reply #5 - Oct 1^st, 2008 at 11:45pm 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
Back to top	Hurt people.....hurt people. Think about it. IP Logged

Jackie

CH.com Moderator
CH.com Alumnus

Offline

Go For It!!!

Posts: 5903
Goshen, IN
Gender: female

Re: Powerless to help..
Reply #6 - Oct 2^nd, 2008 at 6:24am

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. Wink

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

« Last Edit: Oct 2^nd, 2008 at 6:29am by Jackie »

IP Logged

flipperlips

CH.com Alumnus

Offline

Live, Laugh, Love

Posts: 935
Mcallen, TX
Gender: female

Re: Powerless to help..
Reply #7 - Oct 2^nd, 2008 at 8:01am

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 Kiss

Jen

Only one life.....only one chance to make the moment count for something - Racer1_NC

IP Logged

Kristen C.

CH.com Newbie

Offline

Posts: 19
Michigan
Gender: female

Re: Powerless to help..
Reply #8 - Oct 2^nd, 2008 at 9:17am

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.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

us.jpg (Attachment deleted)

It's never too late to have a happy childhood..

IP Logged

Click Here to visit the CH.com Facebook page!

flipperlips

CH.com Alumnus

Offline

Live, Laugh, Love

Posts: 935
Mcallen, TX
Gender: female

Re: Powerless to help..
Reply #9 - Oct 2^nd, 2008 at 9:37am

What a beautiful couple Smiley

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

Only one life.....only one chance to make the moment count for something - Racer1_NC

IP Logged

thebbz Ex Member	Re: Powerless to help.. Reply #10 - Oct 2^nd, 2008 at 2:55pm It is WE. You feel his pain ,,,no doubt. Hang in there, you are doing a fine job. YOU ROCK. all the best thebb
Back to top	IP Logged

CH-HELL

Ex Member

Re: Powerless to help..
Reply #11 - Oct 3^rd, 2008 at 6:33am

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

IP Logged

ClusterChuck

CH.com Alumnus

Offline

The BEAST rises again,
and again, and again,
and .

Posts: 5394
Greenville, North Carolina
Gender: male

Re: Powerless to help..
Reply #12 - Oct 3^rd, 2008 at 10:36am

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

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

IP Logged

Cathi_Pierce

CH.com Alumnus

Offline

I love YaBB 1G - SP1!

Posts: 1191
x0|Oregon City|USA||0|0|OR,Oregon
Gender: female

Re: Powerless to help..
Reply #13 - Oct 3^rd, 2008 at 12:25pm

OMG!

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

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

Cathi

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

IP Logged

Kristen C.

CH.com Newbie

Offline

Posts: 19
Michigan
Gender: female

Re: Powerless to help..
Reply #14 - Oct 3^rd, 2008 at 12:40pm

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

It's never too late to have a happy childhood..

IP Logged

Kristen C.

CH.com Newbie

Offline

Posts: 19
Michigan
Gender: female

Re: Powerless to help..
Reply #15 - Oct 3^rd, 2008 at 12:45pm

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

It's never too late to have a happy childhood..

IP Logged

ClusterChuck

CH.com Alumnus

Offline

The BEAST rises again,
and again, and again,
and .

Posts: 5394
Greenville, North Carolina
Gender: male

Re: Powerless to help..
Reply #16 - Oct 3^rd, 2008 at 1:04pm

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

Chuck

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

IP Logged

Click Here to visit the CH.com Facebook page!

Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: Powerless to help.. Reply #17 - Oct 3^rd, 2008 at 1:09pm Kristen... Check your PM's....I've had a couple thoughts.......... ( , Chuck ) Jackie
Back to top	IP Logged

Cathi_Pierce

CH.com Alumnus

Offline

I love YaBB 1G - SP1!

Posts: 1191
x0|Oregon City|USA||0|0|OR,Oregon
Gender: female

Re: Powerless to help..
Reply #18 - Oct 3^rd, 2008 at 1:15pm

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

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

IP Logged

ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: Powerless to help.. Reply #19 - Oct 3^rd, 2008 at 1:18pm Jackie wrote on Oct 3^rd, 2008 at 1:09pm: ( , Chuck ) <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, Dahlink!
Back to top	CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame. Keep fire extinguisher available, and charged. IP Logged

George

CH.com Moderator
CH.com Alumnus

Offline

Black-Billed Magpie

Posts: 8126
Boise, Idaho USA
Gender: male

Re: Powerless to help..
Reply #20 - Oct 3^rd, 2008 at 1:25pm

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. Wink

)

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

"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

IP Logged

Jackie

CH.com Moderator
CH.com Alumnus

Offline

Go For It!!!

Posts: 5903
Goshen, IN
Gender: female

Re: Powerless to help..
Reply #21 - Oct 3^rd, 2008 at 1:31pm

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?

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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

Let's try this......Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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.

« Last Edit: Oct 3^rd, 2008 at 1:40pm by Jackie »

IP Logged

Kristen C. CH.com Newbie Offline Posts: 19 Michigan Gender:	Re: Powerless to help.. Reply #22 - Oct 3^rd, 2008 at 4:25pm 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!!! Hugs and kisses!!! Kristen
Back to top	It's never too late to have a happy childhood.. IP Logged

flipperlips

CH.com Alumnus

Offline

Live, Laugh, Love

Posts: 935
Mcallen, TX
Gender: female

Re: Powerless to help..
Reply #23 - Oct 3^rd, 2008 at 4:33pm

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

Jen

Only one life.....only one chance to make the moment count for something - Racer1_NC

IP Logged

Kristen C.

CH.com Newbie

Offline

Posts: 19
Michigan
Gender: female

Re: Powerless to help..
Reply #24 - Oct 3^rd, 2008 at 4:45pm

Thanks Jen; I wish you were here Smiley

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

It's never too late to have a happy childhood..

IP Logged

Pages: 1 2 3 4

‹ Previous Topic | Next Topic ›

« Home

‹ Board

Top of this page

©1998-2013 Web Vision Enterprises LLC All rights reserved. All information on this site is protected by international
copyright laws. You may not re-distribute any information from this site without written permission from
Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

DISCLAIMER: All information contained on this web site is for informational purposes only. It is in no way intended to be used as a replacement for professional medical treatment. clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site. All information taken from the internet should be discussed with a medical professional!