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Title: I am so low that the curb is up! Post by Scotty_Dog on Aug 11th, 2002, 3:06am I am in mid cycle, probably have about 3 months to go before daybreak, and the beast is hammering at me now right regular, 4 to 7 times daily. My 6 year old son has been telling me that he is scared of monsters and he wants to sleep with me and the misses. I keep trying to reasure him that there are no monsters, but he is terified. Tonight, after I put him in bed, I was watching TV, dreding sleep because the beast loves to hit me half an hour after I go to sleep, anyway, my son snuck into my bedroom and told my wife that I am the monster! I am feeling realy down now, to say the least. He told my wife that he has these dreams where I grow spikes all over my head, and I am coming into his room to eat his brain. I talked with him tonight when my wife told me he was in my bed, and he told me that he hears me turning into a monster at night. I spend most of my night time hours in the shower banging my head and praying out loud for the pain to stop. Can somebody that is a dad or mom help me? My heart is breaking real bad now. I love my son with all my heart, and to hear him say I am a monster is more than I can take right now. I am still waiting to go to a nuro for the first time in 10 years or so. I know it is not going to help me right away anyway, I just hope and pray he can give me something so my son does not hear me cry anymore. Please help me if you can. Sincerely, Scotty_Dog |
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Title: Re: I am so low that the curb is up! Post by KingOfPain on Aug 11th, 2002, 5:48am S.D., sooooooo sorry to hear you are going through this. I am not a Father but I do have some advise that may help. 1st, get to the Dr. & ask for oxygen, imitrex, verapamil, & possibly DHE (dihydroergotamine mesylate). What my Neuro has me using is Migranal Nasal Spray (DHE, USP). Depending on your health considerations, one or all of these may be used in your fight with the beast. I have & am using all of the above with sucsess. 2nd, tell your son all about your condition, give him as much detail as you can. Lack of knowledge about CH even at his age can be scary in itself. Don't underestimate the power of a child, he may just surprize you when he has all the facts. At the very least it is worth a try. He may be less scared if he knows why Daddy cries & may want to help in his own little way, could be very helpful to him & you. These are mearly suggestions, I hope some if not all will help. Good luck, hang in there & if you would like you can send me a personal message anytime. If you just need to talk or whatever, I am here for you Sir. If you don't already know, we have a chat site at: http://www.headachesupportgroups.com You will have to register, it is free & easy. Then you can talk to all of us & get some help or whatever you need at the time.....a freindly ear, meds suggestions, some one to talk to when the beast is attacking, whatever you need. Feel free to contact me, I hope I have helped. KingOfPain : - { ) |
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Title: Re: I am so low that the curb is up! Post by Scotty_Dog on Aug 11th, 2002, 6:31am Thanks for the advice, but the problem is that I have had no success with any treatment in teh last 20 years! The only thing that works for me is magor heavy duty pain meds. I know that sounds like I am a drugy, but that is how it is. I have tried o2, litiom, amnitriptamene, valum, and a host of others that I can not remember. I stopped going to Nuros about 10 years ago because all they did for me then was dope me up on all kinds of werd stuff and brake the bank. I am going to one on teh 29th of this month because I contacted a clusterhead on this site who got help from this doc. (He has CH as well) My son knows what is wrong with me, and I have told him all about it, but I am an ex-power lifter who use to bench over 600lb in compitition. I am not that strong anymore, but I am still a big guy at 260lb. The problem is that my son thinks I am superman, and if something can make superman drop to the floor and weep like a baby, than your security factor is gone. I have also been out of work for over 8 months due to the job markey, (Microsoft Engineer), and now that the job market is opening in the local area, I am having my beastly visitor again! Seams like the rock and the hard place are getting closer together on me, and I jsut do not see a way out right now. I am a born again Christian, and my faith can not be shaken, I know that something will work, it is just that my son is scared of me. I am looking for advice from somebody who has had something similor so maybe I can use there expereance to get through this. Thanks for the help, i do apreciate everything you said, and yes, it is just nice to have somebody care for a change. Again, thank you, and I mean that from the bottom of my heart. The Scotty_Dog |
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Title: Re: I am so low that the curb is up! Post by Scotty_Dog on Aug 11th, 2002, 6:32am PS, KingOfPain I really like your picture, are you a vet? If so, thank you for serving my country. Pease, The Dog |
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Title: Re: I am so low that the curb is up! Post by KingOfPain on Aug 11th, 2002, 6:38am You are welcome. I wish there was more I could do. I hope someone else has more suggestions for you. Hang in & hang on, keep the faith as sometimes that is all we have. Good luck, KingOfPain (KOP). : - { ) |
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Title: Re: I am so low that the curb is up! Post by KingOfPain on Aug 11th, 2002, 6:43am No, not a vet sorry to say. I do have two Nephews in the service, 1 Air Force, 1 Navy (on the USS Stennis). I am just very patriotic & thought our flag was an appropriate thing for all to see in my posts. Glad you like it. KOP. : - { ) |
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Title: Re: I am so low that the curb is up! Post by catlind on Aug 11th, 2002, 6:46am Scotty Dog, I don't know if I can help you, I have been in many of the same situations. My daughter was 6 when my clusters decided to explode. My son was 8 and I had a 4 month old baby. I too have been through the run of drugs out there that are supposed to help. I'm fortunate in that O2 seems to help me. The only other thing I can take is narcotic pain meds to take enough of the edge off that I don't go crazy. My daughter was awake one night when I got hit hard. I was curled in a ball on the floor rolling around screaming at the cat for walking across the carpet. She was terrified. She is still frightened now, but not of me, just for me. She is scared that it will kill me. I'm trying to help her understand that this won't kill me, that it's just a condition that she can't catch, and that causes a great deal of pain. When a child is 6 they can't relate to that kind of pain. She eventually told me she was afraid I was going to hurt her because it looked to her like I had gone crazy, like I was some monster. There is no easy fix for this, but sit down with your son, and explain the entire situation to him. I had my daughter take her index finger and push into her temple as hard as she could until the pain was bad. Then I explained that my head hurts much worse than that and that is why I act the way I do when I have a headache. Both my husband and I worked with her to reassure her that I wasn't going to hurt her, that it was just because I was in pain that I acted that way. I lost my dad and felt the same way about my security blanket. And I was 32. I don't think there is anything in life that can help with the security in your life. Reassure him that this is a rare condition, and that nothing, absolutely nothing would ever happen to him during your headaches. It's an ongoing open communication that we have with our children so that the kids all understand things. I know it's not much, and probably you've tried alot of what I've told you. If nothing else, know there's another set of parents out here going through what you are. I'm here for you anytime you need me. Email me or IM me if you need to talk. Cat |
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Title: Re: I am so low that the curb is up! Post by ShariRae on Aug 11th, 2002, 7:09am Scotty Dog, I am so sorry to hear that you are in this mess with your son right now. I went through almost a similar thing with my daughter when she was 7. I dunno if this will help you & your son but I did help us. As long as I knew she was awake, I involved her in the headache..had her get the ice pack/frozen peas..whatever..fluff my pillow & straighten my bed (as best she could) so when mommy was ready..I could go back to bed. She needed to feel that she was doing something to help me, and to be reassured that this was nothing that she could "catch" like chicken pox or the flu. And no matter how drained I was.. i never ever forgot to thank her for her "wonderful help in making mommy feel better". I do hope this helps hon. Hope you are pain free ASAP! Huggzz Shari |
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Title: Re: I am so low that the curb is up! Post by Elaine on Aug 11th, 2002, 8:02am I am a mom of four and my children have always known me to have clusters. It was years before we knew what they were but they knew something was wrong. I knew from the start not to push them away or try to protect them from it. When you have kids there really not to many places to hid when getting hit. I let them help me when I had one. One would make coffee, I need coffee when hit. One would get ice for me. I even had what I called at that time a headache box. When ever I got hit and wanted to be alone I got down this box and gave it to them in it was special toys that they liked. They would take the toys to the play room and it kept them busy wile I took care of my cluster. I know parents don't like for kids to see any thing weak (as you call it) in them. For years I worried about the kids and what effect it would have on my children as far as seeing me in pain etc... I believe it helped them grow. They know compassion, they don't make fun of anyone in pain, they go out of their way to help anyone who is hurtting in any way . They grew to know I am human, I feel pain just as they do, and that pain is real even if you can't see it. I think they became better people. The main thing was to let them know I wasn't going to die, that the pain would go away. I was also treated with heavey pain meds, it did no good at all, it made it worst for me. I couldn't fight the beast when he visit because I was to druged up, the pain meds would make me sleepy and when I got hit I was always crying just wanting to sleep. I couldn't fight a cluster when tired. I couldn't take care of my family on those meds. I finally quiet cold turkey on the meds. For years I treated my systoms. I took sinus meds, I took three excederen, I rubed my face and neck with bengay, you name it I did it but I said NO to the pain meds. There is a list of drugs that we use on the OUCH site go there get that list print it out, when you go to the nero, you and him go through that list. It may not be that a med didn't work for you but maybe you did not hit on the right one. When I was just given verapmil a lone it did not work, when I was give o2 alone it didn't work, but when I was given verapamil, nurotan(sp) and imitrex I was able to control the pain much better. I just was not hitting on the right thing. I had to just keep trying till I found what worked. Good luck scottie! |
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Title: Re: I am so low that the curb is up! Post by Svenn on Aug 11th, 2002, 8:29am So sorry to hear this.You are among the best friends that you can find here in "Clusterville" I cant add more then Catlind,ShariRae and Elaine has said. They has said it all. I had the same problems as you with my sons in the late 80s. I`m 100%sure that your son do not think you are a monster,but he has problems with you when you are in pain.So as they said.Try and tell your son EVERYTHING about this.Kids in that age are a lot smarter then we so called "adults"can imagine.They just need to be told whats going on,and how they can help you Your friend in Norway Svenn |
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Title: Re: I am so low that the curb is up! Post by Scotty_Dog on Aug 11th, 2002, 8:44am It sure is nice to have tears in both eyes for a change, and with out pain. I guess it is the lack of sleep and the pain meds, but you all bring me to tears all the time. Thank you all so much for your support and encuragement. I have gotten more help from you guys at this site in one week than i recieved in 20 years from doctors. Thank you so much, Scotty_Dog |
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Title: Re: I am so low that the curb is up! Post by Svenn on Aug 11th, 2002, 8:54am I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway Verapamil Retard 120mgX5-7/daily during cycle Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree Prednisolone in high doze for 10 days 80mg then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway |
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Title: Re: I am so low that the curb is up! Post by kim on Aug 11th, 2002, 9:06am Hey Scotty, Your post hit close. I don't know you, but I sure know exactly how you feel. I have three kids who have witnessed many times the horror of their mom having these ungodly attacks. They do get scared both of and for you. My four year old gets very quiet and I think she tries to disappear. It IS heartbreaking. The older ones quietly try to do what they know has been helpful in the past. The ice paks, the coffee, ask do I want them to run a bath....... I wish I could tell you what to do to make the whole thing just END FOREVER. Unfortunately, that is one thing that no one can do here or anywhere. Damn Clusters attack the whole family. Friends, co-workers too. >:( Keep coming here and sharing. You are bound to get information and advice that will help you out! :) My thoughts and prayers are with you and your family. Kim |
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Title: Re: I am so low that the curb is up! Post by kristi on Aug 11th, 2002, 9:21am Elaine, I thought your post was beautiful and your description of your children helping you with the coffee, etc. when you get hit was wonderful. They are grown now, right? - I bet they are great human beings! Scotty_Dog, My husband suffers with CH, episodic, and he is also a pretty big guy and a former marine; our 4 year old son things he is the great protector and can do do wrong. I don't recall that we ever discussed our son being around the CH; it was just understood that it was going to happen. Hubby gets good abortive relief with the o2. This spring when the cycle hit, our son hit the inquisitive stage, so we used it to teach. Just like Elaine and Kim, we involved him in the HA, not the big ones of course, but the ones that were managable. Our son soon learned that the o2 was daddy's medicine that would make the HA go away, so he took responsibility for getting the o2 mask and putting it over daddy's head and on his face while daddy turned on the tank. He was allowed to stay in the room and witness the HA's, again the ones that were tolerable. If the pain got too bad, hubby would send him to find me and I would distract him.....take him outside to play or something. Before long, our son was leaving the room on his own pretty quickly as his curiousity had been satisfied. We have since discussed the situation, and again like Elaine, we believe that it will help mold a more compassionate person. But we also believe that seeing that even Daddy has weaknesses will make him more accepting of his own as he grows. Hubby never failed to thank him and tell him that his help made the pain go away. Our son would beam with pride and felt empowered that he could help us, like we help him when he is sick. I have seen nothing that indicates that he thought less of his father or feels less secure as a result. BTW, hubby was able to abort his cycle completely with the mushroom therapy. Good luck and PFDAN! Kristi |
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Title: Re: I am so low that the curb is up! Post by pjbgravely on Aug 11th, 2002, 11:06am All I can add Scotty Dog is to go to a nuro and get some meds. Alot of new meds have come on the market and one may be your mirical. I know it is hard to have a CH and pray for it to go away and it doesn't. I don't understand why we still need to goto a DR when we have the great physician. Life is so hard that when Jesus say's enter into your rest we know what he means. I have found that praise helps in a ha. The beast really hates it. My prayers go out to you. |
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Title: Re: I am so low that the curb is up! Post by markdavid on Aug 11th, 2002, 11:30am Scotty-Dog My 6 year old daughter put up with her share of my cycles too. my e-mail is markhoebener@aol.com if you would like I would be glad to have a bottle or bottles delivered to any locatation you wish w/reg set up to 8lpm,I will just tell them I will be travleing to that location its not a prob. this should do the trick..... please feel free our kids are most important and the oxygen is only 15 bucks so don't worry about it and w/ insurance it's next to nothing Mark david |
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Title: Re: I am so low that the curb is up! Post by nancyc on Aug 11th, 2002, 2:33pm Scotty, sorry you are going thru such a rough time, bro..i know i used to try to hide my chs from my son but i saw that was scaring him more..so i sat him down, explained them the best i could since he was so young...he used to bring me icepacks and then when he got older, he used to go pick up my imitrex for me at the pharmacy....he was something else by the time he was a teen...he would take over and if anyone was around, he would tell them to leave me alone...then he would run and get my shot for me..Last time he was here , he even gave me a shot...atleast he felt like he was helping me..and he was....now, that he is not living at home, i need to train my dog, Toby to do that..Good luck bro...and know we are here for you..smiles,nancyc |
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Title: Re: I am so low that the curb is up! Post by Svenn on Aug 11th, 2002, 2:39pm just let your son know what is happening and let him try and help you in anyway he can.You have a lot of good adwice here so just try one or all of them Svenn |
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Title: Re: I am so low that the curb is up! Post by gammavh on Aug 11th, 2002, 7:37pm Hi Scotty, I'm the newbie here. I'm awed at the great advice that you have been given. My kids are grown but when I lived in CA and my grandkids were with me, I involved them too. One would make coffe, one would the ice pack and the pain meds and the little one would hold my hand and tell me he loved me. He has CP so I think it made him a little more understanding. Good luck. I hope the beast leaves you soon. gam |
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Title: Re: I am so low that the curb is up! Post by Charlie on Aug 11th, 2002, 9:38pm Scotty: All I know is that if you tell them the truth, they can handle it. I think it's harder to come up with some facrication that sounds as plausible. I wish I had more to say or had some magic bullet. Take care and keep posting Charlie |
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Title: Re: I am so low that the curb is up! Post by sailpappy on Aug 11th, 2002, 11:30pm Scotty_Dog, I raised 3 kids of my own, in fact my 17 year old is still at home, I am raising 2 grandkids ages 5 and 9 so I know just what your going through, When I realized what affect my moaning and banging and begging for it to stop was having on my family is when I had an ephifimy, I cam to realize that I had to use my own self control to keep all of the sound inside and not allow it to ever be vocal again, aside from the throwing up all they hear is the shower running. This is what I mean when in my post I say not to let yourself get to the selfpity stage, the why me, what did I do to deserve this? I use to say this out loud and I never even thought that the kids could hear it, one day my eldest son told me that the noises I made sounded as if I were ready to kill myself at any moment and it scared him so much, I told him then that I had realized a long time before that I was going to have to live with these attacks for the rest of my life, as by this point we had tried everything chemically, bio feed back, self hypnosis, thought diversion and everything I could think of, to no avail. I made a consious decission that I had to keep it quiet, so I knew when I felt things getting to that point I had to divert my thoughts to something else, I started thinking of things like, our first christmas,seeing Eric(My Oldest) for the first time. That twinkle in Terri's eye when I ask her to marry me! and lo and behold this helped, so I discovered that even if I had to cry, I could do it quietly, by not allowing the muscles in the back of my neck and sholdes to tense up and just staying under the cold water I could control that part of it! So this is my advise to you. When it gets to the point that the pain is getting there, stick your wrist under the flow of the cold water that is dripping off the front of your head and move them around, think about the happiest moments in your life, or even the saddest, you can cry quietly and after banging your head and moaning loudly from the pain they will barely notice a cry! It's very important not to let the upper body tense up at this point, it's hard to stay relaxed but you can divert your thoughts into fighting that, I don't know what treatments you have tried but I'm going to suggest Zoloft for starters if you can get you Doctor to go along, they are a Seratonin uptake inhibitor and I have a feeling that Besides the Oxy-Contin this is what has stopped mine after 32 years of every day, at an average of 7 attacks a day, and believe me I kept a journal for 10 years, it does average out to 7 to 8 a day, so take that and multiply it times 32 years and it comes out to in excess of 85,000 attacks so I have some Idea of what I'm talking about, the only thing that ever helped me at all was the cold water over the head! Work on mind control or bio feed back or self hypnosis, what ever you call it ,it's all the same thing! I hope this helps My Friend, the only other thing is to leave the house when you have an attack until you can come back after the beast leaves you! maybe take up night time walking or jogging! Let me know if I can help at all, Pappy http://www.gifs.net/animate/sungulls.gif http://www.gifs.net/animate/sailboat.gif |
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Title: Re: I am so low that the curb is up! Post by Scotty_Dog on Aug 12th, 2002, 4:36am Thank you all, and thank you sailpappy. Pappy, I have tried alot of stuff over the years, 20 for me, and as you know, sometimes the lack of sleep and the endless parade of pain can ware you down. I am episotic, so I am much better off than you, if there is such a thing, and I thank you so much for caring about my pain enough to post to me. I have tried bio feedback, and I can control my brain waves to almost a comalike state, yet the pain is still there. I almost killed an acupuctuist when he triggered the beast during a session and then told me that there was no way I was feeling pain then, (what a pompsih Ass). I have not tried every drug, but I did try many and quit going to neuro's for 10 years because nothing they had then worked, just made it worse. Hot showers work for me best, with pain meds and alternating with a fozzen water bottle or something else out of the freezer off and on till the pain lets up. I get between 7 and 10 beastly visits a day during cycle, and the cycle last for anywhere from 2 to 8 months. I do not beg God for death of ask, "why me", or "what did I do to deserve this". Those questions are not important to me now that I am a born again Christian. I know that A finite human, myself, could never understand the reson an infanite God would have for this, I just trust Him and know there is a perpose, even if I never know it in this life. I am usualy eather praising God for all the wonderful things in my life that I do not deserve, my son, my wife Susan, my mind, my art, the sun rise, ect, or, when the beast is at his worst, I am humming because teh vibration in my head distracts me. Alot more times than I want to admit, I lose the control and just cry and wail. I have truely been blessed recently by God, He steared me back to look on the net for a site I found when the internet was young, CH.com. And God has given me a wonderful family who I am just getting to know, and that it all of you! I find that I cry alot lately, and now that I have others who understand what this beast feels like, I can admit it. You all have blessed me more than you could ever know on this side of life. I just hope and pray that each and everyone of you finds relief from this torment, but that you never forget the family who resides here. I know that I will not. Going to a new neuro who I found through this site, adn he has Ch too. first appointment is Aug 29th, and I will go through all the prelems again, and I will be patient, and hope for help, thanks to teh support I have recieved here from all of you. Now I am crying again, but at least it is from both eyes, and not from the beast. God Bless You All. Scotty_Dog |
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Title: Re: I am so low that the curb is up! Post by nutty2chat on Aug 12th, 2002, 6:00am I so understand what you are going through. I have two sons that are now 13 and 9. They think that their mommy is a super hero. I have really great kids! The bad part of it is that I used to really be their monster before I saw a specialist for the first time. I would do things like tell them to stop turning the pages in thier books so loudly. I could hear it from their room when I was downstairs. I have since learned to block out most noises so that I can cope without making the rest of the family turn into stone. I haven't figured out how to do that for light yet though, so they still have to be in the dark. You are getting hit double because anything that moves around in the dark is scary for a little kid. My kids are like me, they are sound sleepers. I never had to deal with that part. I would suggest that you check in on your son before you get too bad. Let him know what is going on if he is awake and maybe turn the light on in his room if you can stand it. I would say that more than anything he is afraid of what is moving around in the dark. It just so happens that it is you. Don't take it personal. When I was a little girl, I was afriad of all my dolls when the lights were off because of the way that the moon light would hit their eyes. It looked so spooky. Remember what it is like to be a kid in the dark? Nothing makes it better except turning on the light and finding out that the scary thing standing in the corner is really just your coat hanging on a hook. I know that sometimes it feels like the whole world is either a cause or and effect of our ch, but sometimes things are just circumstantial. Take the cluster out of the picture and just deal with your sons fears. I hope you find relief! Nutty |
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Title: Re: I am so low that the curb is up! Post by oringkid on Aug 12th, 2002, 7:45am Scotty, your heartfelt posts touch me. I have had this stuff for 29 years...my daughter just turned 20 (boy do I feel old) but she is mentally retarded. She had seen these things first hand all her life. I was a single mom for a while before I met my husband, so, like Pappy, I learned to 1)not bang my head on the wall anymore 2) explain the pain as best I could while I was in pain. Like a telecaster, actually describe where the pain is, what it is doing now, whether my worst pain was at the top of my head or my temple, how far down the side of my neck had it gotten. I accomplished this with a lot of panting, many pauses and muted groans but I persisted. I would throw in a smile (yes you can!) even though it may have looked pretty bad. She would help me with icepacks if I needed it. And just like Elaine and the others, I truly believe that it has given her an understanding of other peoples pain and has made her a more compassionate person. When a child gets a glimpse of their parent as a person, a real person as opposed to "Dad" or "Mom", it is a wonderous thing for them and makes them feel closer to you. Don't avoid your son over this cuz you might think you don't want to scare him, face it with him head on. Tell him first, this will not kill Daddy! VERY IMPORTANT! Children are afraid of that when parents seem ill or like something is wrong. Tell him that over and over. Try to explain about the hypothalmus but simplify it "a little organ in daddy's brain is a little bit too big and for some reason that sometimes causes a lot of pain" If he has ever been hurt, even scraped knee, something that made him cry, relate that hurt to yours. "remember how your knee hurt when you fell off your trike? Well Daddy's pain is in one side of his head but it hurts 3 times more cuz the pain is right up in the head where the parts of the brain that tell you you have pain are, so it is a lot bigger pain. And since it is so much bigger and right there in the head, it makes Daddy cry and carry on just like you did when you hurt yourself" Or something to that effect. You know what I mean? Try to talk while in pain, you will be surprised how distracting it can be and before you know it you will have gotten through it. Describe it all "see how Daddy's eye is getting red?" "now my nose is blocking up" Doing this will be good for you and your son and your wife. wishing you PFDAN soon, and forever! Sherry |
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Title: Re: I am so low that the curb is up! Post by NotH20 on Aug 12th, 2002, 9:04am Hey Scotty - I'm not sure I can add much more to what my fellow ch'ers have already posted. They are such intelligent people! :) Medicine has definitely changed drastically in the last 10 years. Even though you may have tried most of the meds, there are new meds and new combos out there. I suggest doing massive research on meds and both you and your new neuro come up with a game plan for your treatment. I too have 2 daughters and they have seen the full gamet of this beast. When they were much younger, around your son's age, they were of course scared. I did involve them as much as I could for their age with the knowledge of the beast and what it was doing to me. They were very helpful on their own in getting me pillows, cold rags, medicine, O2 mask, etc. As they get older (12 & 14 now) their help has changed drastically. This last cycle we taught them how to give me an injection :o . I was on DHE IV for 6 days in the hospital and then came home on IM injections as needed. Due to the various whacky meds I was on, I was pretty much out of my head. We taught them in the event that I couldn't do it myself. They never had to actually give me an injection, but knowing that they could was both a comfort to me and to them. As your son gets older, he'll understand better. It's not YOU that he's afraid of - he's afraid of what the beast if doing to you. He's scared and worried FOR you - not about you. He may just not know how to express his feelings and says that he's afraid of you. Discuss with him how you are feeling after each attack and if possible, let him be of help to you. Give him certain assignments during your attack - make him known of these in advance so he can get you whatever you need. Good luck to you Scotty. You have a wonderful support group here of not only ch'ers, but parents in the same boat as you. I wish you much luck with your appointment - please keep us posted..... NotH20 |
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Title: Re: I am so low that the curb is up! Post by NancyMcFree on Aug 12th, 2002, 11:50am You know big guys do cry .... maybe if you could explain that to your son he would feel better. Keep trying to find a medicine that works for you .... and in the meantime know that your son loves you. He just doesn't love the disease you have ... but heck we don't love it either !!!!!!!!!! Take care ..... praying for PFDAN for you so you can sit with your son and really enjoy life !!!!! |
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Title: Re: I am so low that the curb is up! Post by markdavid on Aug 12th, 2002, 2:05pm My offeron the oxygen still stands , no catch ...... up untill a month ago a could find nothing that worked and I know how bad it can get... That offer is good for any body any where , I'm sure their are plenty of people on this site who would do the same for any one else who'd ask. PFDAN's markdavid |
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Title: Re: I am so low that the curb is up! Post by jonny on Aug 12th, 2002, 2:56pm You got that right, Mark. Most people here will bend over backwards for another CH'er or anyone in general. Your a good dude offering what you have. ..............jonny |
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Title: Re: I am so low that the curb is up! Post by Scotty_Dog on Aug 13th, 2002, 6:07am ;D hanks markdavid, I apreciate the offer, but I am going to hang tough and wait to see the Neuro first to make sure it is safe for me with my high blood presure and other medical conditions. The last two days have been a real bare to deal with, but my wife has taken our son to her parents to stay for a few days to give me some space and let me sleep whenever I get a few minutes peace from the beast. I am trying to keep a brigth outlook on life, and last night i got about 2 hours of sleep, so I am feeling much better, (if you could call it that) Thanks so much to all of you and I pray for PFDAN for all of you too. Sincerely, Scotty_Dog ;D |
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Title: Re: I am so low that the curb is up! Post by markdavid on Aug 13th, 2002, 8:50am HANG IN THERE , I'll be thinking of ya I hope the beast gives ya a fucking break PFDAN's :) |
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Title: Re: I am so low that the curb is up! Post by Mistory on Aug 13th, 2002, 9:04am I am new here, too; I came on thinking I would get some good, solid information on this subject; I didn't expect to find myself crying! I can't believe the outpouring of concern I have witnessed in such a short time! I wish I could add something more helpful; my own kids have watched me suffer migraines, and like some of the others here, I let them "help," which seemed to comfort them. Now they are teenagers, and my headaches have entered a whole new phase; I was surprised to discover my nearly grown kids are scared to death! Their fears are more sophisticated now; they are convinced I have a tumor or something more mysterious but just as fatal. Perhaps worse, my 16 year old is afraid this is hereditary. I at least learned from this site that cluster headaches generally are not, a happy fact I will pass on to her as soon as she wakes up. My only real suggestion, therefore, is to keep reading, and maybe someone out there will have the right answer for you. |
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Title: Re: I am so low that the curb is up! Post by Bob P on Aug 13th, 2002, 10:00am Newer studies are showing somewhat of a heredity factor in cluster headaches. I believe the last article I saw said that a decendant of a clusterhead is 7 times more likey to get CH than the general population. I think I have it filed away in my "things I need to add to the OUCH Library" folder at home. I'll see if I can find it tonight. |
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Title: Re: I am so low that the curb is up! Post by Scotty_Dog on Aug 15th, 2002, 11:44pm Thanks again to all of you. I went to a Nuero who is scared to death to treat me, (HaHA). She is young and is afaid to try and treat me with high blood presure on top of the CH. She is from the old thinking school that says that headache should not be treated with pain killers and they never perscribe them! I found that kind of funny, and after I explained that, "if I break your arm and grind the raw broken bones together for about an hour or 2, all you can take is over the counter meds for it, and about an hour later I do it again, and again, and again....She perscribed me 60 Tylox to get me through till my appointment with the CH doc I found through a fellow Cher here on this site. Seams that sometimes you just have to make the pain real for them. (She also called them CLuster Migrains, ARRGG!) I informed her about the reality of what they are so maybe the next CHer she sees will get a far hearing. And to think she makes about $140K for her ability and knowledge????? Hanging tough and I am going to make it through thanks to all of you guys and gals. May we all have PFDAN soon. God Bless The Scotty_Dog |
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Title: Re: I am so low that the curb is up! Post by Ted on Aug 16th, 2002, 12:02am I'm not sure I understand something here. Why would you want pain killers when there are so many other options? Even with high blood pressure you could still have used O2, at the very least. And that aborts the pain rather then masking it. And with high blood pressure it probably would be better for you then the oxycodone you got her to prescribe for you. |
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Title: Re: I am so low that the curb is up! Post by gammavh on Aug 16th, 2002, 12:53am Hi Ted: What about if you can't get oxygen? I sure can't get it here in the UK. Surely taking pain meds until you can see a CH doctor is better than nothing at all? Just a thought. gam |
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Title: Re: I am so low that the curb is up! Post by Ted on Aug 16th, 2002, 6:42am Hi Gam. I was talking about this one case in particular and not everyone. But, unless triptans and the like don't work for people I still wouldn't understand why someone would rather take something that masks the pain instead of something that aborts it. |
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Title: Re: I am so low that the curb is up! Post by gammavh on Aug 16th, 2002, 6:53am Hi again Ted: I understood that you were talking about Scotty, but I wasn't sure if he had O2 available to him or not. That's what I meant by taking pain meds. Bless his heart I do hope he gets to see his CH doctor soon. My new family doc won't even consider O2 until all other drugs have failed to prevent it. sighhh He just took me off Sodium Valporate and put me on Sanomigran. But told me it could take up to a month to work!!! Thank goodness for Zoimig even if they will only give me six at a time and in the cycle I'm in that'll last me a whole three days. And I can only take 2 in a 24 hour period. So the rest of the time I take any pain meds hanging around the house. There are times like this morning I could pray that I could try O2. Even when I lived in the USA I couldn't get my insurance company to approve the O2 because it wasn't a proven help/cure for CH's. Go figure. gam |
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Title: Re: I am so low that the curb is up! Post by catlind on Aug 16th, 2002, 9:18am Ted, I have extremely low blood pressure and heart palpitations, and the triptans are contraindicated in anyone who has issues with b/p or the heart. They tried them on me with me in the ER and was there 3 hours waiting for things to settle down and it didn't help the headache LOL. As a result, the think it may have triggered a heart attack of sorts or pericarditis (I waited a week with the chest pain before I went to the doc *bonk self*.) Scotty sounds alot like me in that I can't take any of the 'normal' CH meds because of that. I take Tylox to help me get through the attack without killing someone hehe. Now that I have my O2 tank the narcotics are just there to help if the O2 can't eliminate a kip 8-10. Once you see the CH doc Scotty get the O2!!!!!!!! That seems to be the thing that works best for the most people. Cat p.s. Ted I'm not trying to say you don't know what you are talking about or anything, I know from your many posts you are knowledgeable just wanted to relate the info from my own experience. |
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Title: Re: I am so low that the curb is up! Post by Ted on Aug 16th, 2002, 9:35am Hey Cat. Yeah, that's why I just mentioned the O2 for him since he has high blood pressure. As you just mentioned yourself it's your first line of defense. Oh, and thanks for saying those nice things about me. I guess Lincoln was right. You can fool some... :-) |
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Title: Re: I am so low that the curb is up! Post by catlind on Aug 16th, 2002, 9:39am Ted, anyone who uses the jet and tower for their pic post is knowledgeable in my books :) Lest we forget. Besides, I'ma blonde canadian cat transplanted to the US, and oh yeah , something about a blithering or blundering idiot in there somewhere too! LOL Cat |
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