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        Supporter's Corner >> Supporter's Corner >> Hospice Nurse/Hubby Suffers!
        
(Message started by: IvyNurse on May 23^rd, 2002, 2:14pm)

Title: Hospice Nurse/Hubby Suffers!
Post by IvyNurse on May 23^rd, 2002, 2:14pm

Hello all! I am new to this web site. My husband (Ronnie - Roncarivy35) suffers from CH's and has for 18 years. We are going through a "Dance" during this time. This current dance started about 3 week ago and we are hoping we have reached the apex and are on the slide back down the "HILL"! I am a hospice nurse and believe me, I have seen a lot of things....but....I DO NOT believe that some of my patients suffer as much as my husband does during his attacks..or dances! I want to help him so badly, and we have read so much from this site and are trying to practice some of the things we have learned. Just this week he started using the Imitrex injections and they seem to help...he has already tried the pills and nose spray. Last evening we talked about things he needs me to do and things I wanted to do for him and during his dance at 0245 he woke me up to help him with the injection. I felt honored! I love him very much and want to help....and he let me! This is progress. I wish all of our loved ones peace! Hope to hear from many of you and hope this dance passes soon!

Love to all! God Bless and PFDAN!

Carol Ivy

Title: Re: Hospice Nurse/Hubby Suffers!
Post by NotH20 on May 23^rd, 2002, 3:07pm

Hello Carol - I've suffered from ch's for over 21 years and started with them when I was 15. I've had it both ways during these years - I've had help and I've been totally by myself. Let me tell you - WE NEED AND LOVE OUR SUPPORTERS!!!! For me there is no greater calming feeling during an attack than knowing that my supporter is right there if needed. She gives me my shots (i hate the gun), she's there to throw a blanket in the dryer when I'm coming down off the injection and there to help me up off the floor when I'm ready to stand again. If there is anything I need - she's right there....even if it's to hear me rant and rave and continually ask "why me?"

You sound like a wonderful supporter and your hubby I'm sure is greatful.

You mentioned Imitrex pills - has he tried Zomig and Maxalt? Those are some others that help abort the ch.

Good luck to your husband during his cycle and good luck to you - you have an extremely important job!

NotH20

Title: Re: Hospice Nurse/Hubby Suffers!
Post by BonnieW on May 23^rd, 2002, 4:51pm

Hi Carol - welcome to the site. It sounds like you are doing a great job supporting your husband. Has he tried oxygen as an abortive? We discovered it two years ago and it has been great - probably works over 80% of the time with my husband. My husband has suffered for 22 years - we were so excited to find this site in April 2000 - right at the end of one of his worst cycles ever. Stick around - it will be worth it.

Title: Re: Hospice Nurse/Hubby Suffers!
Post by Darleen on May 23^rd, 2002, 6:25pm

Hi Carol,

I'm glad to see that you have our site. It is a wonderful site for information and support. I'm sorry Ronnie is having to go through the "dance" as it is called but hopefully it will end soon. Luckily with me, John is not having clusters right now but we have a feeling they could be rearing their ugly head this year as his normally come every 2 years or so. Anyway, Glad you have found us and stick around - you have both found your new family.

Lots of love to you both,
Darleen

Title: Re: Hospice Nurse/Hubby Suffers!
Post by Ree on May 23^rd, 2002, 6:33pm

Welcome Carol... hey Bonnie we too found this site in 2000 was the best thing that ever happend to two people that were thinking we were fighting this battle alone. Carol, it sounds like you have things well under control and I cant suggest any other abortives... One thing Ronnie could try is to take an imatrex pill before TRYING to sleep... Dave (my husband) thinks he made this one up and it works for him. By the time the pill kicks in he would be waking with one and his attack would never grow to the intensity that others he would wake up from... Also is Ronnie on a prevent like Verapamil or Neurontin talk to the neurologist about one... It will make the cycle more tollerable if I can say that... God Bless you both you will be in my prayers and thoughts tonight... Hopefully it will end soon for all of us... Ree

Title: Re: Hospice Nurse/Hubby Suffers!
Post by IvyNurse on May 23^rd, 2002, 11:06pm

Thanks to all who responded. Ronnie has tried to be on several maintenance medications and none helped. We have not tried the oxygen but I plan to talk to his MD the next time we see her. When he is having a Ch...he frantically rubs his hid with his hand....whenever I see him start to do that I know one is coming.

Thanks a bunch!

Carol

Title: Re: Hospice Nurse/Hubby Suffers!
Post by Donna on May 31^st, 2002, 5:46pm

Hi Carol:

I was really impressed with the fact that as a Hospice Nurse, you see your husband as having more pain than some of your patients. If only the docs would realize how much pain clusterheads endure!

Your husband is very lucky to have you, as are the rest here who have such caring supporters as we see here at ch.com. And our reward is in knowing that we are helping our loved one.

Title: Re: Hospice Nurse/Hubby Suffers!
Post by lazerboots on Jun 2^nd, 2002, 5:31pm

;)hi everyone im new to this ste and am so glad i found it.my partner is in the middle of a "dance" as you call it it has been going on now for 7 weeks and doesnt seem to be abaiting(up to 4 attacks a day) i am becoming increasingly scared for him, i cant help..i feel useless, nothing i say or do helps him and i HATE! HATE! HATE! having to see him like this ....to watch the person you love with al your heart in so much pain is very disstressing, my nerves are at breaking point but i am trying to keep myself together for his sake but i dont know how much more i can take just knowing i can get support from this site helps ..thak you all
joyce (jadslartybum@aol.com) feel free to mail me anytime

Title: Re: Hospice Nurse/Hubby Suffers!
Post by Donna on Jun 3^rd, 2002, 7:53pm

Hi Lazerboots.........

We supporters do understand how you feel.......and it's also frightening to see our clusterpeople in such pain.

The most important thing is when their pain subsides, to let them know that you care, you are in the background waiting for some clue from them if they should need or want your help, and that their pain will not push you away.

It isn't easy to "let" someone whose respect you want, see you being temporarily brought to your knees by this pain. So it is important for we supporters to use the right words when discussing their vulnerability . We must restore their pride and self image. We know that they are not thought less of, but some of them don't feel that this is true. Especially when plans are ruined and holiday dinners go down the tubes.

It takes a lot of strength to be a supporter, and a lot of real love. Anything less just might not make it for the long haul.

And toots, that's why we have this supporters corner. It was one of the greatest ideas to come down the Clusterpike. Use it whenever you have the slightest need. Someone who understands is almost always here.

Thanks Margi and DJ.

Title: Re: Hospice Nurse/Hubby Suffers!
Post by Margi on Jun 3^rd, 2002, 8:40pm

Donna, what an AWESOME post!! You really nailed how it is to be a supporter. Um...you chargin' royalities on this bad boy? May I put it up at the Family Services Team page over at OUCH?

Welcome to the team, Lazerboots. Pull up a chair.

Title: Re: Hospice Nurse/Hubby Suffers!
Post by Donna on Jun 5^th, 2002, 8:52pm

Well Margi, if you put it up before my copyright comes thru, it's all yours. lol.