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Topic: New Here-we sure needed this site (Read 325 times) |
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brer_rabbit
New Board Newbie
I love YaBB 1G - SP1!
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New Here-we sure needed this site
« on: Jun 19th, 2002, 3:22pm » |
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Gosh, where to start. My hubby started having ch in '89, just out of the blue. In the beginng he had one a day- always around5 or 6 P.M. lasting an hour or two. He has always been chronic but now the ch are different. Since last fall- maybe longer than that- he's been having ch all night,every two or three hours. If he wakes up anytime without a ch we feel like he's had a break. But the sleep deprivation is wearing him down. It's like slowly watching him die. We recently got on V.A. He saw neurologist for the first time. He prescibed Elavil. No help for the ch but made him easier to get along with. He just started Neurotin last week, low dose of 300mg to start. Passed on Verapamil due to side effect of constipation. Hope to get O2 on next visit to dr.
He is becoming extremely depressed now that we have learned more about ch. He is absolutly hopeless. I'm having trouble getting him to try drugs because he feels like it's pointless. He would probably go for the "shrooms". Just needed to vent my feelings. I'll keep logging on and keep looking for a miracle. Christy
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Candy
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Re: New Here-we sure needed this site
« Reply #1 on: Jun 20th, 2002, 1:23am » |
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Hi Christy! I'm so glad you're here. My hubby and I are new too.
He's episodal, and wasn't diagnosed until the last bout, and we've learned a bit about the Beast since, but this site is providing so much more. I've never been through an attack with him, so I don't know much that is ch unique, but I do know what it's like to watch helplessly when someone you love deeply is in tremendous pain, and my heart goes out to you.
Along with physical exhaustion, he must be mentally and emotionally depleted as well. Being new at this, I'm not sure what may help, but I'm researching every day so if I stumble on something I'll be sure to share. It's easy to see that you're giving your all to support him, and I think that's wonderful in ways I can't even explain, but don't forget to be good to yourself as well. I'll be thinking of you often.
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RED
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Re: New Here-we sure needed this site
« Reply #2 on: Jun 23rd, 2002, 9:54pm » |
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Hi! I can totally relate. My husband was diagnosed with chronic ch 2 years ago. He's been on all the classic meds (Lithium,Gabapentin,Propranolol,Sansert, Amitriptyline,Prednisone) Six months ago his Dr. put him on Prednisone along with Sansert and Lithium and things got better. He would feel the pressure daily but it wouldn't lead into the vicious face pain like usual. He started to feel better as he too was depressed. He hadn't worked for 2 years and was withdrawing. Since he's felt better he got a job in May. Life was becoming slightly normal when in June the Dr. weaned him off the prednisone as it's dangerous to be on it for more than 6 months. The first day with no prednisone and BANG our nightmare began. He made an emergency app. with his neurologist and was told of the Imitrex Nasal Spray. This is a lifesaver so far except for the bummer of more than 2 ch's a day. The other day he had 4, the last one at 5am which was the worst(he tthrew up which he doesn't normally do). We live each day wondering what kind of day it will be, should we plan anything. This ch disorder is from hell. I just started on the message board but have known of this website for awhile. This is how I realized what my husband had and I printed off the info and then he went to the neurologist and BINGO that's what he was diagnosed with. I keep praying for an answer to our pain. We have a 7yr old daughter who feels so sad for her Dad. She always asks him what # on the pain scale his headache is. I've been feeling like I need to talk with others who understand what we're going through as it's really hard to explain to people who have no idea what these ch's are all about. Thanks for listening, good luck to you and your husband. Keep trying, keep trying new meds until something works. We're still fighting an up hill battle for sanity!!!!! Take Care! Eleanor and Sean 
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MaureenG
New Board Junior
Clusterheart since 2000!
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Re: New Here-we sure needed this site
« Reply #3 on: Jun 24th, 2002, 12:30am » |
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Welcome to all of you!!
Christy, I would strongly suggest your husband reconsider Verapamil. When I met my boyfriend 1 1/2 yrs ago, he had been suffering from "migraines" for 5 years already. Like in Eleanor's case, I discovered through researching that it was actually clusters he suffers from.
I learned a lot from this site and received countless support from everyone. For just about a year straight, Steve was getting attacks every day, often 3-4/day, and they kept starting earlier and earlier, until eventually, it seemed like it was one endless pain. I kept telling him about treatments that others recommended - Verapamil, Imitrex, oxygen, but like your husband, he became increasingly discouraged. He just kept telling me that he had "tried everything" and nothing works. He just did what he could to mask the pain temporarily until the next attack, including many, MANY trips to the ER when all else failed.
He was out of work for a while because he would be up all night with his attacks and just couldn't function during the day.
Finally, one trip to the ER failed to relieve his pain after about 6 injections, so they decided to admit him. He was in for four days. Although I think he was the worst during his stay (they kept giving him Dilauded which I'm convinced was causing bounceback headaches), he left the hospital with a prescription for Verapamil and Depakote. MY GOD, what a difference!!!!
It's been about 2-3 months now, and he has had mostly pain-free days. He occasionally has shadow pains, and he waits for the attack that never comes. When he does get an attack, it doesn't last more than 1/2 hour, and he only gets one for the day.
All he keeps saying now is how good he feels. He got a new job that is more flexible when he needs to go to his doctor's appointment or leave a little early because of an attack. I cannot remember the last time I have seen him feel this good about himself.
Sorry this is so long, but I really think that the Verapamil is as close to a wonder drug as we're going to get. He hasn't been taking the Depakote in about a week because he worries about the liver damage. He has seen a slight change, but I think the Verapamil is doing a good enough job on its own.
Oxygen is definitely helpful at the beginning of an attack. He doesn't have it at home yet, because he needs to find a new neurologist when he gets his insurance with his new job, but it has worked well when he's gotten it in the ER. Just make sure you get a non-rebreather mask, and a valve that can be set to 10-12 liters.
If you decide to give the Verap a try, make sure the prescription is the right dosage. For CH, you need around 360mg, but for high blood pressure, the dosage is much lower.
Sorry again for rambling, but I would hate to see your husband suffer needlessly. I just kept harassing Steve to try knew things, and now I make sure to remind him that I was right, so next time he might listen to me! 
If I asked Steve, he would probably say he would rather be constipated for a month than give up the Verapamil.
Best of luck to you all!!
Maureen
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