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Title: Beast is back.... Post by debpa on Sep 16th, 2005, 9:31am I have visited this site once before...about two and a half years ago when my husband was going thru a cycle. We are basically still newly weds and will celebrate our third anniversary in December. This is the second cycle I have seen him go thru and if it weren't for the information I found on this site I may not have made it thru the first one. Thank you. (Bowing down in gratitude.) At any rate, the beast came knocking at the door about three weeks ago. My husband prefers to call it Freddy (Kruger). I can fully understand why. He hasn't slept much in the last three days. Today was the first time since I've known him that he actually called off work and took a sick day due to lack of sleep. He has started taking prednisone, which knocked out the cycle last time. Not this time. His neuro also increased his daily dose of Verapimil and he is still taking his daily dose of melatonin. Relys on Kalyn (spell check!) when things get too rough. We have not had to take the trip to the E.R. yet but I know it's coming. He has tried Imitrex nasal spray in the past and found it to be usless in stopping his pain. My question is this...if the nasal spray was ineffective, will it do any good to try Imitrex injections? I know that the way he is feeling right now he would eat cow pies if someone told him that they would stop his headaches. God.....I hope it doesn't come to that! :) He is contacting his neuro again today to see what else he can try. How difficult is it to get oxygen? He has had some relief from that also in the past. I know I'm rambling...sorry. Any suggestions would be appreciated. I realize that the percentage of people with clusters is extremely small, but why isn't the medical community doing more to educate themselves about this and why aren't the drug companies working harder to find something that works?! Ok....sorry once again. I'm off my soap box now. Thanks for listening. |
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Title: Re: Beast is back.... Post by Racer1_NC on Sep 16th, 2005, 10:10am Quote:
I've used neither, but many report that the injections work where the nasal spray didn't. Quote:
My standard is a tad higher, I'd actually have to witness success before trying this method. ;) Quote:
It varies from doctor to doctor. My advice would be to print out all the O2 info you can find and take it with you to argue for it. Bill |
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Title: Re: Beast is back.... Post by debpa on Sep 16th, 2005, 11:00am Thank you Bill and the laugh was truly appreciated....I needed that. |
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Title: Re: Beast is back.... Post by eisgirle on Sep 16th, 2005, 6:37pm Hi debpa, I read your entry and can tell you that the imitrex injections do work as opposed to the nasal spray. My fiance tried the nasal spray and it didn't work but he has no pain when he takes his injections because it is direct relief and cloud 9 for quite awhile. I hope that helps. Dawn :) |
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Title: Re: Beast is back.... Post by debpa on Sep 19th, 2005, 8:27am Thanks Dawn, I will pass the info. along to my hubby. An update is in order. My husband called the neuro. again last Friday. She increased his daily dose of Verapimil, put him on Cafergot again, started him on Depakote which is a new drug for him. He is still taking the steriods. He also takes Fiorinal during a headache but it's not very effective. ( I listed the wrong med. in my first post.) Our countertop looks like the local pharmacy but the combination seems to be side tracking the headaches. Thank God. He has not had a head banger in three days and has finally been able to sleep all night during that time. He has an occasional "lightening bolt" but nothing has been able to truly break thru. I felt for the first time yesterday that I was actually getting my husband "back". He is still a nervous because he knows as well as I do that this cycle is not over yet. He can be a bit cranky at times but considering what he goes thru with these things I think he does remarkably well. I just can't wait till life is back to normal. I hate the fact that these headaches put a hold on every aspect of our lives. Hopefully we'll see an end to the cycle soon. |
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Title: Re: Beast is back.... Post by Emily87 on Sep 22nd, 2005, 8:28pm I know how you feel. Our local pharmacy has gotten much business from us lately. The imitrix injections are almost a miracle drug, except that you can't take more than 2 shots per day. My husband had the nasal spray and it did not work because his nasal passages congest, this is the second sign of an onset for him. But I'll tell you, within 7 minutes of the injection it works, the beast in his head is re-caged. But be careful, it works so well that we rely on in and if the 3rd, 4th, or more headaches appear it Can't be used because it will either not work at all, or it will cause a reflash headache. We are trying depakote now, but just started this and I dont really know how it's working, he says it makes him tired and he doesn't feel like he thinks as well. |
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Title: Re: Beast is back.... Post by debpa on Sep 23rd, 2005, 9:45am My husband has yet to try the Imitrex injections. His neuro seems to feel that he may do ok taking the current barrage of medications that he has been on. I can tell you that in the beginning of this cycle they seemed to help...but now, I'm not so sure. He was 150 miles from home yesterday when he got hit with a seven. Had to pull over in a church parking lot and walk, do pushups which he says helps a little. He was almost ready to ask someone for a ride to a hospital but decided he didn't want to have to explain what was happening to him while he was going thru a headache. I don't know how he gets thru this day. He came home and didn't eat dinner, was too nervous waiting for the next headache. The beast didn't dissapoint him....came back and hung around for about an hour forcing my husband to walk around the house, do pushups till he was exausted. I'm nervous for him. I'm angry with these damn cluster headaches for causing him so much pain. God I hate these things. I also have a question for anyone who may have some insite. My husband for some reason has been experiencing sensitivity to light especially during a nightime headache. He has had cluster cycles for the last 10 or 12 years on and off and has never experienced this before. Could it be a combination of the medication he is taking? I've listed medications in my previous post. Thanks for listening. |
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Title: Re: Beast is back.... Post by Emily87 on Sep 23rd, 2005, 6:02pm Hi- first off, hang in there- my heart is with you. Sometimes my husband is sensitive to light sometimes not. When I first met him ice packs really helped, that stopped but then pressing on his forehead (I call it chasing the beast) helped, and still does at times. I can feel where it is because it pulses but these headaches are tricky little b******ds and I have to move around a lot. He gets very very nervous when it's cycle time, but in the beginning his headaches are regular, we can count on them happening within 1/2 hour of the same time each day so that helps planning. But as it gets heavier there is no way to predict when he'll go from 1 to 2 or 3 headaches per day. I've seen him suffer through as many as 5. All I can say is that whatever helps him, do it or support it. I've had to take vacation days from work to travel with him if he's in a cycle and has business out of town because when his hit, he can't always talk. And at times if he can talk it sure isn't coherent! Don't know if all of this helped or not, but I hope so. All I can share is my experience, strength and hope! :) |
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Title: Re: Beast is back.... Post by eisgirle on Sep 23rd, 2005, 6:37pm Hi Debpa, You sound like youa re experiencing what we are and our counter is full and the credit card bill is high. Frank is also sensitive to the light lately and I also am not sure why. Can all these medications be good for a person? Frank is on epival (divalproex sodium) 4 times a day and verapamil twice daily and he is allowed 2 imitrex injections---oh and oxycocet when needed. This is crazy and nothing seems to help. I feel every supporters pain and I hope a cure is found soon and not just our partners being guinea pigs. Take care Dawn |
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Title: Re: Beast is back.... Post by debpa on Sep 26th, 2005, 8:33am Thank you all once again for your input and support. We made a trip to the E.R. last night. I've had about four hours of sleep and my husband averaged about as much also. He has called off work for the second time this month. Highly unusual for him, but very necessary. I wasn't able to get the day off today because there is no one to cover for me. I feel like a bad wife. I'm torn between my responsibilities of my job and being by my husbands side when he needs me. I'm concerned about the side effects of the meds he is taking. It seems to me that since he started taking the Depakote he has been a bit foggy brained. That's how he describes it anyway. Now they've increased his dose. At the hospital last night they gave him the oxygen that he requested, which helped for awhile. They also gave him 20mg of Lidocaine intranasal which also helped take away the nagging #4 headache he had for a few hours. They sent him home with two more doses of the stuff to take when he gets another bout. I don't know how it will work when he's in a full tango with the beast but I guess we'll find out. Has anyone had any experience with Lidocaine? I cannot tell you all how nice it is to come here and talk about what is going on in our lives because of these bastardly things. Someone who has never seen them or lived with them cannot imagine what we go thru on a day to day basis. Thank you again for listening. Hugs to everyone. |
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Title: Re: Beast is back.... Post by debpa on Sep 29th, 2005, 2:53pm Ok...time for another update. My husband is off the Depakote because it was just making him too dopey. He is now taking the Verapimil and Prednisone only. He is in week number eight of this cycle and we're hoping that it ends soon. He usually goes about eight weeks. He tried Imitrex injections for the first time today and has declared it to be "amazing". It worked extremely quickly at aborting his headache. Quickly as in less than two minutes. We are printing info. today on the imitrex tip. Thank god for this website and thank you all for listening once again. |
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Title: Re: Beast is back.... Post by unsolved1 on Oct 8th, 2005, 11:45pm Glad to hear your husband found Imitrex injections work wonderfully ! They have saved my life (no kidding). I tried Lidocaine once and it was useless for me. The Depakote was useless too. Hope your husband ends his cycle soon !! Goodluck UNsolved |
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