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mawmaw
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new poster
« on: Sep 27th, 2004, 10:02pm » |
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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.
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BobG
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Re: new poster
« Reply #1 on: Sep 27th, 2004, 10:25pm » |
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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?
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Jonny
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Com'on Mawmaw,
We cant help if we have no info, Babe.
.....................................jonny
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mawmaw
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Re: new poster
« Reply #3 on: Sep 28th, 2004, 8:37pm » |
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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
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Jonny
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Has he tried 02?
02 is a god send for a lot of us.
.........................................jonny
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mawmaw
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Re: new poster
« Reply #5 on: Sep 28th, 2004, 8:41pm » |
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yes he says it helps while he has it on. some times i am scared he might hurt his self
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Jonny
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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
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BobG
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Re: new poster
« Reply #7 on: Sep 28th, 2004, 10:13pm » |
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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. |
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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.
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| « Last Edit: Oct 4th, 2004, 6:27pm by BobG » |
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thebbz
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Re: new poster
« Reply #8 on: Sep 28th, 2004, 10:17pm » |
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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
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don
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Quote:| dhe iv but we both are alittle leary |
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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.
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mawmaw
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Re: new poster
« Reply #10 on: Sep 28th, 2004, 10:26pm » |
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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
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mawmaw
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Re: new poster
« Reply #11 on: Sep 28th, 2004, 10:29pm » |
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thanks Don i will let him know that it has helped some. he would give anything right now for some relief.
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mawmaw
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Re: new poster
« Reply #12 on: Sep 29th, 2004, 9:03pm » |
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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.
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thebbz
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Re: new poster
« Reply #13 on: Sep 29th, 2004, 10:00pm » |
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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
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mawmaw
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Re: new poster
« Reply #14 on: Sep 29th, 2004, 11:13pm » |
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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.
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BobG
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Re: new poster
« Reply #15 on: Sep 30th, 2004, 4:28pm » |
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on Sep 28th, 2004, 10:26pm, mawmaw wrote:| he has a rebreather mask and uses oxygen all the time at night with cpap mask (sleep apnea) |
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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.
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| « Last Edit: Sep 30th, 2004, 4:30pm by BobG » |
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mawmaw
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Re: new poster
« Reply #16 on: Sep 30th, 2004, 4:56pm » |
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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. 
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BobG
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Re: new poster
« Reply #17 on: Sep 30th, 2004, 5:00pm » |
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Thanks mawmaw.
I know about the grandkids. Mine can screw up a steel ball with a rubber hammer.
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mawmaw
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Re: new poster
« Reply #18 on: Oct 4th, 2004, 6:25pm » |
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Hello All, my husband is home from the hospital after a 3 day stay. The DHE worked  . 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.
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Jonny
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Thats great news, Maw......great news indeed!!
...................................jonny
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mawmaw
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Re: new poster
« Reply #20 on: Oct 4th, 2004, 6:53pm » |
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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.
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thebbz
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Re: new poster
« Reply #21 on: Oct 4th, 2004, 6:54pm » |
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Maw,
Far out ,good news..good news..
BB 
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mawmaw
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Re: new poster
« Reply #22 on: Oct 15th, 2004, 6:50pm » |
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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
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LeLimey
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Re: new poster
« Reply #23 on: Oct 15th, 2004, 7:02pm » |
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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
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mawmaw
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Re: new poster
« Reply #24 on: Oct 15th, 2004, 8:05pm » |
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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
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