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Title: What should I do? Post by Laura_Hall on Oct 8th, 2004, 12:20pm My husband is totally suffering and is begging me not to let him go to sleep. He looks like he's had a stroke. This has been going on for 14 days..first time. Will going to sleep make it worse? He hasn't had any rest and it's killing me to wake him up every few minutes when it looks like he may get a few minutes of relief. I'm scared and I don't know what to do. Please help... |
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Title: Re: What should I do? Post by E-Double on Oct 8th, 2004, 12:25pm I post this all over the place..... I have become a huge advocate for melatonin. It seems that many of us have caught a break from the night time hits by taking it prior to attempting sleep. I personally take 6-9mg about 1/2 an hour before I'm going to lay down. I've taken back my nights and have pretty much eliminated the night hits. Sleep is a bonus for most of us and rarely occurs. I feel lucky because of this. Wish it worked during the day but atleast I'm rested enough to battle if necessary . Feel good, Eric |
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Title: Re: What should I do? Post by thudpucker on Oct 8th, 2004, 12:25pm Has he seen a doctor? That sure sounds like a good place to start. |
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Title: Re: What should I do? Post by Laura_Hall on Oct 8th, 2004, 12:31pm That's over the counter right? I can run down to Walgreen's and get it? Will it work right away? He went to the doctor but they just gave him pain medicine and oxygen. We are working on getting the oxygen for home but I don't know how long that will take. I've been reading everything on this site but I don't see anything about the way he is walking after a headache or how long that droopy eye lasts after the headache or any of these other symptoms. Is that normal? Thank you both SO much for writing back. |
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Title: Re: What should I do? Post by E-Double on Oct 8th, 2004, 12:32pm on 10/08/04 at 12:25:51, thudpucker wrote:
Oh god I can't believe that is not the first question or thing I suggested! I'm so sorry.... Does your hubby have a diagnosis of CH? Is he on meds already? Has he had all the test that rule out everything else "more serious"? If so and it is just CH then re-read my first reply. Pain free wishes, E. |
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Title: Re: What should I do? Post by thomas on Oct 8th, 2004, 12:35pm Nighttime hits? Ch is a terrible condition and they hurt no matter what time of the day you get hit. Personally, the ones that kill me the most, are the ones that come while I am sleeping. Many people have had success avoiding the nighttime hits by using melatonin, which in the U.S. is available over the counter. The dosage varies from person to person, but most usually have success with anywhere from 6-9mg. Some have had luck with much lower doses as well; you may have to experiment with the dosage, in order to find the one that is best for you. As with any medication, check with your doctor before you start using it. PFNAD to you. Atta Boy Eric, keep it up. ;;D |
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Title: Re: What should I do? Post by Laura_Hall on Oct 8th, 2004, 12:41pm Yes...he's been diagnosed but was not given any medication except Panlor. It's not helping...I'm praying the melatonin will help and am going to go get some. I didn't know about this site when we went to the doctor so I had no idea what to even ask about and he really didn't have any suggestions. I can't believe how horrible this is. |
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Title: Re: What should I do? Post by ArCane on Oct 8th, 2004, 12:53pm on 10/08/04 at 12:31:18, Laura_Hall wrote:
Right before, during, and after I get hit I am dizzy. Maybe this is why he is walking funky. Dont know how common it is but it happens. Droopy eye is commom. When Im in a cycle it droops a noticable amount, especially before, during, and after getting hit. When Im out of cycle I still have a droopy eye but you have to look really close and it isnt noticable. Hope your husband gets to feeling better. Prayers and vibes coming you alls way. |
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Title: Re: What should I do? Post by Laura_Hall on Oct 8th, 2004, 12:58pm How long do those things last after the headaches Arcane? A few hours or a day or better? He acts like he wants to die and looks like he is. I'm panicking. |
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Title: Re: What should I do? Post by karma on Oct 8th, 2004, 1:04pm Hi Laura, Melatonin yes. It should help him sleep wich will make things get better. Try and get the oxygen ASAP. Make sure you have a nonrebreather mask. If you check the oxygen info on the left it will tell you all about it. Strong coffee or other caffinated drinks may help. lots of cold water during the hits helps some. Ice packs on the head and neck. It hard to accomplish but staying relaxed and slow deep breathing from the dyaphram may help lessen the intensity of the pain. Be there for him but don't be offended if he tells you to get lost while he's in pain. Your doing just what he needs and remember it will end. |
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Title: Re: What should I do? Post by ArCane on Oct 8th, 2004, 1:09pm Im sorry to hear he is in so much pain. I know how it is to be worrying about a love one with CH (my father had it too). The best thing to do is be calm and just be there for him. The pain makes you want to die but you never actually do. Having such a caring, loving wife such as yourself helps him alot. I know it does. To answer your question, I recover from being dizzy usually about 5-15 mins after the headache. The droopy eye just depends for me. Some times minutes sometimes days. Like I said, I have one all the time its just more noticable before, during, and after a hit. Everyone is different with the beast. Even my father had them different then me. He couldnt eat certain things or he would get one. I can eat anything. I hope this helps. I wish you two the best. |
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Title: Re: What should I do? Post by Kevin_M on Oct 8th, 2004, 1:14pm on 10/08/04 at 12:41:23, Laura_Hall wrote:
Is this perhaps Pamelor? Nortriptyline HCL usually in 50 or 75mg cap. I was given this but it was ineffective as a preventative. There are better preventatives, which is one way to help. Kevin M |
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Title: Re: What should I do? Post by karma on Oct 8th, 2004, 1:17pm The funny walk may be due to exhaustion and stress. The droopy eye will probably clear up as soon as he had some pain free time. |
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Title: Re: What should I do? Post by Laura_Hall on Oct 8th, 2004, 1:25pm I am so grateful for these replies. I'm so relieved that you all are here to help. There isn't going to be anything like passing out or seizures is there? I don't know how you all can be so strong and live day after day with this. I've never seen or heard of anything like this before. I guess our lives have changed forever now. He is sleeping now and I just don't have the heart to try and wake him so he won't get another. I'm going to tell him about the breathing when he wakes up and in the meantime I'm going to try it myself...maybe it will keep me from going nuts! |
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Title: Re: What should I do? Post by Laura_Hall on Oct 8th, 2004, 1:30pm Yes...that's the pills. He takes one and a half when he feels it coming on but it doesn't touch the pain. It only makes him so groggy and tired after the headache is over that he can't function. I'm not so sure he wouldn't be better off just riding it out than taking that stuff. |
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Title: Re: What should I do? Post by Mr. Happy on Oct 8th, 2004, 1:35pm on 10/08/04 at 13:25:04, Laura_Hall wrote:
You're not just whistling Dixie. Once you're thru this round or "cycle," another one will be waiting in the wings, either weeks, months or years down the road. If Panlor (dihydrocodine) is what he's taking, it's useless in treating CH. If you have the script for O2 in your paws, open the yellow pages to Home Medical Suppliers (or something close to that effect) amd get some O2 delivered immediately - or go pick it up yourself. It's Friday afternoon, and they may be shutting down for the weekend. If you like your Doc, call his office. If you don't like your Doc, call another one, and tell them you need immediate treatment for CH. There are a number of "Triptans" that are effective in aborting CH. There are a number of preventatives available in preventing CH. Much as I hate the crap, a 7 - 10 day burst of Prednisone can buy him some relatively rapid relief and much needed time for a preventative to kick in. This place can only help so much. You need effective meds, and you need them Now. Worry about the long term approach to this after you get a handle on the immediate problem. CH can be scary stuff, especially the first time around. You've been at this for a couple weeks. Time to treat your hubby a little more agressively. Make some calls, RJ |
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Title: Re: What should I do? Post by ArCane on Oct 8th, 2004, 1:37pm on 10/08/04 at 13:25:04, Laura_Hall wrote:
Ive never passed out or had a seizure during or after an attack. I wouldnt worry about it. No doubt, it's hard living with them. We find strength through our family, our friends, God, and a little place on the web called clusterheadaches.com ;;D. Your husband is very lucky to have someone like you. |
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Title: Re: What should I do? Post by karma on Oct 8th, 2004, 1:38pm Laura, Be prepared, if he wakes up with another its not uncommon. Have him try sleeping in a reclyned position and not laying down. Have a pot of strong coffe ready. Get some ice packs ready or find some bags of frozen vegetables. Rubbing these around the eye head and neck help allot. bare feet, cold tiles and bare hands in warm/hot water help. Anything that gets the blood directed away from the noggin and moving in another direction. The deep breathing and relaxing can be really hard to accomplish and is a technique I use when i'm already in pain. The more relaxed he can stay the sooner the pain will subside. |
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Title: Re: What should I do? Post by Gator on Oct 8th, 2004, 2:24pm Pamelor aka Nortriptyline is an anti-depressant. It comes in capsules, not pills. I couldn't see any doctor prescribing it for aborting pain. It does have an effect on how the body perceives pain, but it will not stop it. My doc has prescribed to me as 100mg at bedtime. Panlor is a narcotic pain reliever. For most of us narcotics to not work, in fact they are known to cause more pain in the form of rebound headaches. Melatonin has been suggested here and it does work for a lot of people, BUT you should check with your doctor before taking this or any other medicine. Try printing this out and taking it to your doctor. It contains information on Preventative, Abortive, Transitional and Surgical treatments. http://www.future-drugs.com/admin/articlefile/ERN020304.pdf Good luck and thank you for being such a caring supporter. Many people here would love to have someone like you in their corner. Gator |
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Title: oh my friend i feel for you and your hubby Post by snook on Oct 8th, 2004, 4:02pm :P [smiley=huh.gif] 8) :( :-[ :) well i sure can relate for your concern and feel for your hubby. im not only a concerned wife, and this web site has been such a GREAT HELP TO ME, not only is the info soooo helpful but the way these wonderful chs and ones that care and love them have been such a help. when i was dealing with some medy problems of my own, trazodone was given to me for sleep. it was at one time prescribed for depression in which they found didnt work, but IS A WONDERFUL SLEEP AID. now you should consult with your doctor 1st, but in my research there are no harmful side effects. but again consult your doctor if he is truley a ch this med has helped my hubby so very much . it really has helped to over come that fear of going to sleep, unless the beast has already been looming in the wings then he just hunkers down and waits like all know what thats like. get on the pc and check this med out, my hubby has been in and out of this monster going on 6 months just when we think maybe the cycles are coming to an end , we think maybe they are just shadows BANG THIER STILL THERE. anyway my prays are with you and yours hang in there and check tazodone out. ( again ASK YOUR DOCTOR 1ST PLEASE) but i swear to you when he started taking this med not only does he sleep through the night but they dont trigger ch thats a biggy much love and my prays are with you and yours, AND TO ALL LOVED ONES OF CHS AND YOU TRULELY TROOPERS OUT THERE WHO SUFFER FROM THIS DISGUSTING HORRABLE MONSTER BARB |
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Title: Re: What should I do? Post by Kevin_M on Oct 8th, 2004, 5:38pm on 10/08/04 at 13:30:48, Laura_Hall wrote:
Sounds like panlor was given as an abortive, in which case Hap and Gator's remarks apply well. Sorry for the confusion. Kevin M |
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Title: Re: What should I do? Post by Laura_Hall on Oct 9th, 2004, 9:48am Oh my gosh I feel like you all have saved our lives. I didn't even stop to reply after I read RJ's post and ran right out and found oxygen and got the melatonin. We lay down and took a nap from 4 to 7....I think that is the most sleep he has had in 15 days now. He woke up at 7 with one, put the oxygen on, and it was GONE IN FIVE MINUTES!!!! Then he took the melatonin. He woke up at three with another, took the oxygen, AND SAME THING. GONE! Right now he is STILL asleep and I am so happy just to look over at him and see him at peace. He does NOT look like he's had a stroke now. All of you are angels disguised as people. I was so scared, so shell-shocked, and so exhausted yesterday and there you all were calm, educated, so supportive, and the BEST advice in the world. I don't know what will happen today but I am much better prepared and so much more hopeful that we can manage this. I am so grateful and thank God that there is a place like this and that you all are here. My eternal thanks and appreciation to each and every one of you! |
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Title: Re: What should I do? Post by nani on Oct 9th, 2004, 10:43am Thanks to you for being such a good supporter. Your hubby is a lucky man... PFDAN to him and I hope you both get some rest. [smiley=hug.gif] |
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Title: Re: What should I do? Post by Kevin_M on Oct 9th, 2004, 11:29am Along with your husband and yourself, you make a lot of people happy here posting such good news. Real glad to hear it. Mr Hap's words befit the situation appropriately, all you had to do was act. Great going! Kevin M |
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Title: Re: What should I do? Post by don on Oct 9th, 2004, 12:00pm Quote:
Just a little curious as to how you were able to obtain the 02 so quickly? |
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Title: Re: What should I do? Post by karma on Oct 9th, 2004, 12:09pm She got out of the La Z Boy ;;D |
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Title: Re: What should I do? Post by Laura_Hall on Oct 9th, 2004, 12:48pm I did just what Mr. Happy told me to do....I opened the phonebook and found a medical supply place. I chose one called Preferred. I called them up and said, "My husband has cluster headaches and needs to have oxygen therapy. How soon can we get it and what do we need to do? She said that they needed a prescription from the doctor and the insurance clearance. I gave her the doctor's phone number and told her to work out the insurance later that I would pay for it. Then I called the doctor's office and told them that they would be calling for the prescription and that it was an emergency and we needed it right away. They were here with it in two hours! It's $50 a month to rent the canister and $10 for a refill. I don't know what they will do about the insurance but I would pay a thousand times that to have the result that we have had. It's almost 11 in the morning here and NO HEADACHE. Now I'm doing the happy dance instead of my husband doing the beast bop! |
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Title: Re: What should I do? Post by don on Oct 9th, 2004, 5:26pm Good job. Good Doc. Back to the Lazy Boy. ZZZZZZZZZZZZZZZZZZZZZ. |
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Title: Re: What should I do? Post by Connie on Oct 9th, 2004, 8:15pm Laura, You posts reminded me so much of the ones I wrote to this board four years ago when I was in your situation. I learned so much here and it was great that these total strangers stayed with me and gave me so much support every step of the way. I know we don't have the actual pain but we hurt just the same. I am unfortunately back again four years later and once again needed the support of this board to get me through a really tough night. Stick around everyone here is great. To everyone especially Sean & Chuck I cannot thank you enough for getting me through Thursday night. Connie |
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Title: Re: What should I do? Post by Sean_C on Oct 9th, 2004, 8:24pm [smiley=hug.gif] Sean................. ;;D |
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Title: Re: What should I do? Post by kb on Oct 9th, 2004, 11:24pm Laura: Regarding the use of Oxygen, I find that if I only use it until the headache is gone then stop right away, I don't get the "rebound" headaches later in the night (or actually morning). VERY glad to know your guy is getting some relief. I can't imagine living with this without the support of Imitrex, Oxygen and this web site. Like most, my physician -neurologist wasn't much help. I told him how to treat me (then he charged me $800). But, he did sign the Rx. By the way, just to confirm since I didn't remember seeing it, tell your husband, no drinking. Alcohol is a guarantee headache - a very bad one - every time. Best of luck Ken |
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Title: Re: What should I do? Post by vig on Oct 9th, 2004, 11:26pm Good job. Good Doc. GOOD WIFE!! |
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Title: Re: What should I do? Post by alleyoop on Oct 10th, 2004, 12:43am What a great string! Made my day just reading it! Your husband is truly a lucky man! ............................alley ;) |
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Title: Re: What should I do? Post by cschick on Oct 10th, 2004, 12:47am I just went thru and read all of this post. Wow! You must be one hell of a woman. I wish your husband AND you some fantastic PF nights with wonderful sleep. As for the rest of you CHs - I already LOVE all of you - such great support here. ;;D |
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