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(Message started by: mawmaw on Sep 27^th, 2004, 10:02pm)

Title: new poster
Post by mawmaw on Sep 27^th, 2004, 10:02pm

my husband was diagnoised in june of this year with ch. he has been on lots of different meds since, with no relief so far. I found this website right after he was diagnoised and it has been very helpful.

Title: Re: new poster
Post by BobG on Sep 27^th, 2004, 10:25pm

Hey there mawmaw. Welcome to the board.

Can you tell us some more about your husband, symptoms, meds he has tried, etc? Is he willing to come and talk to us?

Title: Re: new poster
Post by Jonny on Sep 28^th, 2004, 6:41pm

Com'on Mawmaw,

We cant help if we have no info, Babe.

.....................................jonny

Title: Re: new poster
Post by mawmaw on Sep 28^th, 2004, 8:37pm

his symptoms are searing pain at his left temple and eye it tears up and his nose runs .this happens 6 or more times a day from 15min to 2hrs. he has taken verapamil depakote topamax naproxen imitrex injection (helped for awhile) a beta blocker stadol injection demerol injection percocet . its hard to remember them all oxygen therapy helps . drs want to try dhe iv but we both are alittle leary. He would get on line if we had access at home but i can only get on at work. i print him everything i read so that he is well informed

Title: Re: new poster
Post by Jonny on Sep 28^th, 2004, 8:39pm

Has he tried 02?

02 is a god send for a lot of us.

.........................................jonny

Title: Re: new poster
Post by mawmaw on Sep 28^th, 2004, 8:41pm

yes he says it helps while he has it on. some times i am scared he might hurt his self

Title: Re: new poster
Post by Jonny on Sep 28^th, 2004, 8:51pm

02 cant hurt you cause you are only on it for a max of 20 mins, if it dont work after 20 mins its not going to......

.......................jonny

Title: Re: new poster
Post by BobG on Sep 28^th, 2004, 10:13pm

Many here have tried the DHE treatment (I haven't). The impression I get from their posts is that it stops the clusters

Quote from don

Quote:

The DHE IV drip broke the worst cycle of my life and I've been dealing with CH for 27 years. That was followed by the longest remission I have ever had, 3 years.
Give it some thought.

You mentioned percocet....stay away from the pain killers. They don't work on clusters.

Verapamil........how much was he taking? Many here are are on high doses 800mg or more. (work his way up slowly)

The 'oxygen info' button on the left will help with the 02 treatment. Check and see if he was doing it right.

Good luck. Let us know.

Oopps....modified to add don's quote.

Title: Re: new poster
Post by thebbz on Sep 28^th, 2004, 10:17pm

One other note on the o2, is he using a non rebreather mask ,it is imperitive it is administered properly.
Tell the old man to hang in there it hasn't killed me yet after 25 years. Sounds like he's in good hands, that is important to have someone .
BB

Title: Re: new poster
Post by don on Sep 28^th, 2004, 10:24pm

Quote:

dhe iv but we both are alittle leary

The DHE IV drip broke the worst cycle of my life and I've been dealing with CH for 27 years. That was followed by the longest remission I have ever had, 3 years.

Give it some thought.

Title: Re: new poster
Post by mawmaw on Sep 28^th, 2004, 10:26pm

he has a rebreather mask and uses oxygen all the time at night with cpap mask (sleep apnea) he gets really discouraged lately he was diagnosed in june but ch started in april. he is taking 240mg verapamil 3xday and does exactly what the neuro tells him. percocet was a long time ago

Title: Re: new poster
Post by mawmaw on Sep 28^th, 2004, 10:29pm

thanks Don i will let him know that it has helped some. he would give anything right now for some relief.

Title: Re: new poster
Post by mawmaw on Sep 29^th, 2004, 9:03pm

Well my husband goes into the hospital Fri. Oct.1,to start the DHE IV treatment. We were told by the neuro today that he could be in there as many as 11 days. Thanks for the info and I will let you know how he is doing.

Title: Re: new poster
Post by thebbz on Sep 29^th, 2004, 10:00pm

Hey Maw,
Had the DHE IV twice. It killed the demon , but it is not fun. I dont mean to scare ya . It will cause some queasy feeling, coupled with the CH for a short time. We all are different so I hope he gets some relief. Worked for 3 days for me. DHE should be administered correctly with other drugs to keep you from gagging and stomach convulsions, make sure the Doc stays close initially and some stupid nurse doesn't give the DHE and then run around looking for the reglan or phenegran while he gags, my wife took out a nurse and the staff drug her off when they did that one. ::) BB

Title: Re: new poster
Post by mawmaw on Sep 29^th, 2004, 11:13pm

thanks bb. I am pretty hands on when it comes to his care. Whether it is in the hospital or at drs office. He had five surgeries on his left leg before they amputated in 2000, so this hospital(UVA in Charlottesville VA) knows me and him pretty well. I think we made quite an impression with the neuro about not having bs while he is in there.

Title: Re: new poster
Post by BobG on Sep 30^th, 2004, 4:28pm

on 09/28/04 at 22:26:52, mawmaw wrote:

he has a rebreather mask and uses oxygen all the time at night with cpap mask (sleep apnea)

I'm a little confused here, please help me understand.

Are you saying he uses oxygen/cpap mask for sleep apnea?
Or, are you saying he uses the cpap mask to deliver oxygen? If yes, how does he hook it to the 02 tank?
Or, are you confusing pure oxygen with normal air from the cpap mask.
All night on oxygen can be very dangerous.

Title: Re: new poster
Post by mawmaw on Sep 30^th, 2004, 4:56pm

my husband uses nonrebreather mask during the day and before bed for ch, but he also has sleep apnea and copd. At nite he uses his cpap with three liters of oxygen. Sorry that I didn't make sense. He is really worried about his hospital stay. Thanks for all the insite it has been helpful. Sorry that I'm not better at this. We use to have a comptuer at home but grandkids destroyed it. [smiley=laugh.gif]

Title: Re: new poster
Post by BobG on Sep 30^th, 2004, 5:00pm

Thanks mawmaw.

I know about the grandkids. Mine can screw up a steel ball with a rubber hammer. ::)

Title: Re: new poster
Post by mawmaw on Oct 4^th, 2004, 6:25pm

Hello All, my husband is home from the hospital after a 3 day stay. The DHE worked :D :D. As of 12:30 Saturday afternoon
he has been headache free. He slept 9 hours Saturday nite and 9 hrs. Sunday nite. He looks like a different person and is acting like my husband again. Thank you , all who responded with your helpful advice. We both know that the beast can roar back anytime. Hopfully with the imitrex inj. and O2 we can catch it before it gets out of hand again.

Title: Re: new poster
Post by Jonny on Oct 4^th, 2004, 6:33pm

Thats great news, Maw......great news indeed!!

...................................jonny

Title: Re: new poster
Post by mawmaw on Oct 4^th, 2004, 6:53pm

I forgot to ask if anyone has used migranal. The neuro's at UVA gave him a prescription of that today and changed his preventive also. The verapamil did not seem to work anyway. They started him on elavil at 100mg at bed time. Has anyone had any success with this.

Title: Re: new poster
Post by thebbz on Oct 4^th, 2004, 6:54pm

Maw,
Far out ,good news..good news..
BB ;;D ;;D ;;D

Title: Re: new poster
Post by mawmaw on Oct 15^th, 2004, 6:50pm

I want to thank everyone who has given of themselves on this website. I am not sure that I would be able to make through the days with out some of the humor and out pouring of good vibes that I read here. I am not the CH sufferer my hubby is and if I could take these awful headaches away I would in a minute.
If I could I would like to get something off my chest. My husband and I have filed for custody of four of our grandchildren. My daughter and son-in-law have gotten themselves addicted to meth. We have had two of the grandkids with us for a while and we worry about the other two all the time. Social services in this area are the pits,because the school and other individuals have reported the mistreatment of these babies to no avail. As bad a time as my husband has had for the last 27 weeks, all he wants to do is make sure that these boys are not negelected anymore. We tried every way that we could to get this settled by not having to go to court,but it looks like the only way.My husband has asked me often in the last few months why I stay with him when he has been so hard to live with . It's easy I tell him. No matter how hard these HA hit him he is never going to be able to hide the huge heart he has. Thanks for letting me get this off my chest .
Lots of hugs and good vibes to all

Mawmaw Cindy

Title: Re: new poster
Post by LeLimey on Oct 15^th, 2004, 7:02pm

Hello Cindy,
I'm sorry yuo and your husband are having such a bad time of it. I can relate to him wondering how you stay as I wonder why my poor hubby does but I love him and I'm glad he does! He makes the pain more bearable just by being there for me and not saying a word. Honestly, your husband couldn't manage without you either :)
Is going to court the only option left for you? Is there anyone else other than the state who wants the kids? IE Other grandparents or anyone? I hope not as it will make it easier for you. I shall keep my fingers and everything else crossed for you and pray as hard as I can that the kids can stay with you. I think being with family where possible is the most important thing for kids, being with familiar people who they know love them helps ease the fear they are bound to be experiencing. How old are they all? Keep us updated, I really want to know how you are getting on with getting custody. I hope your daughter and son-in-law get the help they need too. Drugs are filthy rotten things, I hate the way they destroy so many lives. ((HUGS)) Take care of you too!!
Helen

Title: Re: new poster
Post by mawmaw on Oct 15^th, 2004, 8:05pm

Thank you for the reply Helen. This situation with the grandkids has been going on for a long time and the state has been the one to drag their feet about making sure the babies are safe. We let all of them move into our house for a while with the understanding that the parents would get into treatment. They had lost thier house and had two cars repossed. Things went fine for about a month and I caught them doing drugs in my house. Needless to say we told them they had to go, which broke both my hubby and my hearts for the babies. They wouldn't leave them with us until they got their s*** together. All six of them ended up living in a motel room and the parents have made no attempt to change. The eight year old takes care of the rest of them and that is so wrong. I've cried myself to sleep many anight over how far my daughter has fallen. She use to be such a good mother to her boys and now its like she doesn't even know they are alive. We know that this drastic step of going to court is going to be very difficult and we went to counseling before deciding for sure that this was something that we could handle. We both know that what we couldn't handle is for something horrible to happen to these kids and that is pretty much what CPS told us would have to happen before they could remove the kids. Dumb huh

Title: Re: new poster
Post by thebbz on Oct 15^th, 2004, 8:32pm

Thanks for checking back. Glad the DHE thing worked. Been awile is he still pain free? Sorry to hear about the kids. That meth is the scourge of the earth. Kiss the grand kids for us. :P
BB

Title: Re: new poster
Post by mawmaw on Oct 15^th, 2004, 9:09pm

BB, the DHE only worked for about three days after he was released from the hospital. He is discouraged but has not given up. He loves the kids and that helps him to keep going. I'll give them a kiss for you ;;D

Cindy

Title: Re: new poster
Post by thebbz on Oct 15^th, 2004, 9:17pm

Cindy ,
Encourage him to hop in here, if there is time with all thats going on . He will find that when the depressing discouraging crap that comes with this would be alleviated by others that relate. For me this is humor. There is something that comes with CH, and that is a sense of humor only we can understand.. 8) [smiley=laugh.gif] All the best.
BB

Title: Re: new poster
Post by mawmaw on Oct 15^th, 2004, 9:46pm

BB, you are right about the humor and hopfully I will be able to get him online soon. He has heard so much about this sight from me and hopfully we will make it to a meet and greet sometime. :) :) :)

Cindy