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Title: Newbie Here Post by Out0fTheMist on Jul 31st, 2005, 11:49am Hi to everyone, my name is Ruth, My hubby was a CH and suffered many years. No meds worked, until he was placed on a beta blocker for high blood pressure ( he never suffered another Cluster pain after that but had all the symptons) . His Clusters caused mini strokes, confirmed by a neuro. 5 years ago he died form a massive stroke, our world stopped. David's Clusters started when he was 19, he died at the age of 42. David's Clusters were inherited from his dad and at the age of 6 our daughter was diagnosed with true Clusters only the inherited part didn't stop there. She also inherited my migraines. She can be in a full cycle pain level 10 and get hit by a full blown migraine ontop of the Cluster. Talk about pain levels. Sam (daughter) is now 16, school and her social life is suffering. I am so glad we found this site. How wonderful to find a support group dedicated to only this issue. For the past 6 years we have not had any kind of medical coverage and over the counter meds of course don't help. Last month we finally got med coverage but the appointment to get into a neuro is 1 month. So now we wait. About the only thing to bring her relief is working with her pressure points on her feet and rubbing her feet, even then its not a lot of relief, but it has helped. I am so glad we found this site and have sent Sam a link so that she may join. :) |
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Title: Re: Newbie Here Post by nani on Jul 31st, 2005, 12:16pm Hello, Ruth and Sam. Welcome and I'm sorry you're here. I'm sorry about your loss. CH can be devastating, but it's treatable. Before your Neurology appointment, I suggest you learn as much as you can here and have Sam keep a headache diary. Have her record time of day, intensity, duration, etc. Look over on the left and you'll see a link for oxygen info. Read it, print it and take it to your dr appointment. Do the same with this link: http://www.brightok.net/~mnjday/chtherapy.pdf There is a promising alternative treatment as well. Have a look at all the related links, inform yourself fully and talk to your dr. Print this page for the appointment: http://med-owl.com/clusterheadaches/tiki-index.php?page=Kudzu And read all the pages and threads in this link: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362: Your support and assistance is very valuable to Sam. Thank you. :) Good luck and keep us posted, OK? pain free wishes to your home, nani |
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Title: Re: Newbie Here Post by LeLimey on Jul 31st, 2005, 12:33pm Hello Ruth, I had to go away and compose myself before I could reply to you. It takes alot to get to a ch'er, we think we've seen it all but your story cut me to the quick. [smiley=hug.gif] I'm so sorry for your loss, your David was far too young and so are you. I feel a lot of parallels with you I think. I'm the ch'er in my house but my husband is a David too and I too have a child with CH. My son, Jasper who is 3 has recently been diagnosed with CH. I have an idea of the pain you know too well. I'm so relieved you finally have medical insurance. There are alot of meds here you can research as well both conventional and alternative. Read up on the Oxygen info, that stuff is a lifesaver for me. Get Sam to come and join as quickly as possible, we will help her in any way we can. And you too of course! You've had so much taken from you already, you sound like you have been a terrific supporter and you still are. Welcome to our family, join in, get to know us and let us get to know you better. Hopefully one day we can all meet up. We do organise meet and greets so keep an eye out for one in your area. Take care and stay in touch okay? lots and lots of love Helen |
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Title: Re: Newbie Here Post by lionsound on Jul 31st, 2005, 6:55pm Hi Ruth, Hi Sam too! :) SO glad you found us. I have migraines and CH too. (diagnosed a few years ago, but have had them since I was a kid) Oxygen works as an abortive for me for both my migraine and CH read this: http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm you might be able to get your regular doc to prescribe it while you wait for the neurologist. Something else that you can do is to call the neuro office every morning and see if they have any cancellations, or get on their cancalleation list if you can. Other non-med things to try: *ice or frozen peas on her head/eye/or neck (some prefer heat) *breathing steam from a filled sink with hot water or a shower. *standing in front of the fan or AC *or a combo of a hot shwoer than switching to cold water on my head. *SUPPORT FROM HERE!!! ... is my best medicine :) Sam, I'm sorry this is interfering with your school and friends, I've been there. It's awful. But you are strong and you can do this! If either if you have more questions, please ask us..or PM me. Be well and Pain free, Rori |
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Title: Re: Newbie Here Post by unsolved1 on Jul 31st, 2005, 7:39pm Hi Ruth [smiley=hiya.gif] UNsolved |
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Title: Re: Newbie Here Post by sassy_lady on Jul 31st, 2005, 9:54pm HELLO RUTH & SAM, MY NAME IS JOLENE, & I AM NEW HERE TOO, I'VE FOUND OUT SO MUCH FROM THIS SITE & THE PEOPLE HERE, I'M A SUPPORTER OF A CH'ER, I HAVE LEARNED SO MUCH FROM THIS SITE THE INFO IS GREAT & ANSWERS ALOT OF ?'S, & GIVES GREAT ADVICE ON MEDS & THE SUPPORT TEAM HERE IS A TRUE BLESSING FOR BOTH THE CH'ER & THE SUPPORTER. LOTS OF LOVE & PRAYERS TO YOU & YOURS!! PAIN FREE NIGHTS & DAYS!!! WELCOME :) JOLENE |
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Title: Re: Newbie Here Post by maffumatt on Jul 31st, 2005, 11:48pm glad you found us and sorry for your loss. I bet we can learn alot from you and your experiances if you care to share them with us. My doc warned me about the risk of strokes but dont see much mention about them here. Hope that your daughter finds the help she needs. Listen to the people here, there are years of accumalated knowlege here that rivals any docs library. |
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Title: Re: Newbie Here Post by Out0fTheMist on Aug 1st, 2005, 11:34am Thank all of you so much for the welcome and support. Took me a few minutes to stop crying and be able to reply back. Someone mentioned the stroke factor and I can assure all CH's sufferes it is a real and large threat. Please for the sake of your families have your neuro check this out. I also thank all of you for the suggestion of the Oxygen treatment, I will take this to our neuro. Sam like her dad is a Chronic sufferer. Getting ready for the neuro visit she is keeping a journal and can tell you what level of pain and if a migraine hit ontop of the Cluster. if it happened during sleep or awake, what she was feeling and what started it. There has been no pattern or reason so far that links her Clusters except any kind of stress will set hers off. Her smallest break has been a week, longest running time 3 weeks. Very much like her dads. She's a brave kid and faces these nightmares with a lot of courage almost as if she was born to them and it's just another day. Which sadly is true. She will soon be joining us here and hopes to get to know everyone. Thank you of you again, I look forward to this new family. Ruth :D |
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Title: Re: Newbie Here Post by LeLimey on Aug 1st, 2005, 11:44am Take your time and have a good look around Ruth, keep posting too because I for one am really looking forward to getting to know you better as well as meeting Sam lots of love Helen |
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Title: Re: Newbie Here Post by burnt-toast on Aug 1st, 2005, 12:23pm Welcome aboard Ruth - sorry to hear your family is so touched by this disease. There's a considerable amount of information here and the folks will alway help with support and additional information when they can. We'll keep an eye out for Sam if she chooses to join. Best wishes to you and your family. Tom |
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Title: The school is not setting her up aRe: Newbie Here Post by Out0fTheMist on Aug 5th, 2005, 9:20pm Hi all, I wanted to let all of you know how helpful your advice and this site is. I printed off a copy of the signs of a Cluster and what the CH suffers. Can't remember who wrote it but know that it discribes what I have watched happen. Due to all of the days Sam missed in school last year, under VA law she was not suppose to move to 10th grade. Thanks to all the help here which I printed and took to her teachers and the administrators, Sam was advanced to 10th grade. The school is now in the process of setting her up an IEP based on Other Health Issues for eligibilty. Just wanted to pass this on to anyone else that has kids who suffer and miss so much school. Sam spent a very flustrating year in 9th grade, her teachers didn't understand and thought she was just trying to get out of class, by middle of 9th grade she gave up on school. In March she was placed in a special class just to get her back in school. By then she was suffering panic attacks and even more stress which yep you guessed it brought on more Clusters. We see the neuro in 4 more weeks YEAAA !!! Sam also got up enough nerve to venture out a little in the world and just joined the Volunteer Fire Dept and even made them aware of her CH's. I am so proud of her. This kid is made of courage. Thank you again for the info and if anyone has a child suffering CH's it would be a good idea to get the school involved. If Sam misses school this year due to Clusters the time willnot be counted against her, thanks to the eligibilty plan and getting everything on paper. Good luck to all Ruth :) |
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Title: Re: Newbie Here Post by Kim Y. on Aug 5th, 2005, 11:33pm Ruth and Sam Welcome to the site. Sorry that you had to under these circumstances. Truely sorry for your loss. Have to admit that is one of my greatest fears with CH is stroke. PF wishes and vibes Sam I pray you get some answers and help when you go to the Neuro. Glad you found us and go armed with information. Kim |
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Title: Re: Newbie Here Post by bnfreeman on Aug 6th, 2005, 6:03am Ruth, Welcome to your new home. My heart goes out to you and your family. It's great to hear that your daughter is continuing living life and not let this bring her down. It takes a lot of strength. I did not know the stroke factor. I asked a neuro in the past, but he said it was not a threat. I too suffer with cluster-migraines. You can learn so much from this site. Everyone is wonderful. Best Wishes! Brandi |
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Title: Re: Newbie Here Post by sandie99 on Aug 6th, 2005, 12:28pm Ruth & Sam, a warm welcome to ch.com family! :) I'm so sorry to hear about David... :'( And I'm sorry that Sam has ch. It's not something I wish to anyone. But I'm very glad indeed that you've found us. We're here to help you in any way we can. :) Wishing PF days to Sam, Sanna :) |
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Title: Re: Newbie Here Post by Charlie on Aug 7th, 2005, 2:29am Welcome aboard but I'm sorry you have to deal with this horror. Lots of good advice can be found here and we hope you stick around. I'm very sorry about your daughter. She is a good candidate to use the following technique. Good circulation can be a factor in its use: Dr. Wright’s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. Charlie |
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Title: Re: Newbie Here Post by Out0fTheMist on Sep 10th, 2005, 4:10pm AN Update on Sam Just wanted to share visit to Neuro. GRRRRRRR , Within 20 minutes of being in Neuro's (1st time in his office) office and him "interviewing" Sam, the good doc says Sam suffers from Migraines and that Migraines and Clusters are pretty much the same headache...that Sam was to young to be suffering Clusters (dignosied by another Neuro in 2nd grade), and that she didn't have any signs of past mini-strokes ( not even the lowering of one eye now) grrrrrrr,,,, After 1 hour of cussing out the Neuro (sorry but lost my temper after 6 years of waiting to see a Neuro) he is reffering Sam to UVA Medical Center. He treated me like a complete idiot that didn't know a thing about CH and that I was trying to put the CH's on her because I lost her dad to stroke..... grrrrrrr Just had to sound off !!!! Sorry Ruth :'( |
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Title: Re: Newbie Here Post by lionsound on Sep 10th, 2005, 8:37pm Ruth, I am sorry that sounds so awful.[smiley=hug.gif] I hate it when docs treat us like that. Good for you for telling him off. Go Mom! He's an uninformed arse and Samantha deserves better!!! Please keep trying to see a good doc. And vent anytime! that's why we are here. May you and Samantha be well and PF! -lionsound |
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Title: Re: Newbie Here Post by Out0fTheMist on Nov 15th, 2005, 4:03pm Yea, November 29, I am taking Sam to UVA Medical Center. Trying very hard not to get my hopes up but I am praying docs will find her some kind of relief. She is now in school only 10 hours a week. But the kid has spirit. She refuses to let these CH devils beat her down. She is now an official volunteer member of our local fire dept and begins her 1st training with the fire dept next month. The school is finally working with her to keep her in school and maybe even graduate early next year ( a year ahead of time). Her grades have shot up to A's and B's. Just wanted to update everyone and wish all of you a peaceful pain free time as the holiday's approach. Thank you always for your support Ruth :) |
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Title: Re: Newbie Here Post by zanychef on Nov 15th, 2005, 4:32pm yehhhhh wtg Sam!!! wtg Ruth!!!!!! read your post for the first time today an nearly cried my heart out :'( right til the end bit ;;D ;;D hope evrything goes well at the UVA fingers an toes crossed for you!pfs ian |
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Title: Re: Newbie Here Post by Out0fTheMist on Nov 16th, 2005, 11:37am Thank you Ian, LOL I have to say at this point Society, Doctors and Neuros are staring to tick me off!!!! Time to come out fighting for my child and full steam ahead. :) Blessings Ruth |
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Title: Re: Newbie Here Post by chewy on Nov 16th, 2005, 7:39pm Welcome Ruth and Sam. Sam: You are an inspiration to anyone suffering from CH. If my house catches fire I hope you are the one who comes to put it out. When your done we'll share some O2 and cluster stories. If its the Jeep please let it burn! Bank owns it anyway. |
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Title: Re: Newbie Here Post by Barry_T_Coles on Nov 16th, 2005, 9:34pm Welcome Ruth and Sam. Barry from Australia here, sorry to hear your having a hard time with everything but keep the chin up. I'm down in Perth the capital city of my state right now seeing a Nuro ( took three months & a 2000km trip to get to this point). I was warned off of this Nuro by another sufferer here in West Aus but he was the one my GP refered me to so not a lot of choice, the bloke who warned me off saw this Nuro 18 years ago and sugested that he shuold have been deregistered, well the good news is some profesionals are becoming enlightened. I took the advice of our family here and went armed with all the info I had downloaded from the site and it did the trick ( if I could have turned the paper I had with me back into wood I could have built a masnion ) The Nuro as good as admitted that I probably knew more about CH than he did. Keep your chin up keep fighting and growl at any Doc who dos'nt understand untill they do. Kind Regards Barry |
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Title: Re: Newbie Here Post by Kate in Oz on Nov 17th, 2005, 5:29am Hi Ruth, I'm so sorry to hear about your loss [smiley=hug.gif] I am glad tho' that you found this site and have been able to use the information here to make life a bit easier for Sam. She sounds like she's a fighter and I spose that's one of the most important things when you suffer from CH - the ability to pick yourself up off the floor and get on with life. I'm praying all goes well with your appointment at the medical centre. Damn doctors can make it all so much harder to have to deal with when they treat you like that!!! Urrrr >:( Please keep us informed as to how you get on. Ruth, sounds like you're a terrific mum and supporter!!! Good on ya - give those doctors hell if you have to. Wishing you both all the very best, Kate |
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Title: Re: Newbie Here Post by Out0fTheMist on Nov 23rd, 2005, 11:08am Thanks Kate Great News! Took Sam to UVA yesterday. Finally found a neuro willing to listen. He was very upset to find that so far after all the other doc visits no one thought to run test on Sam. He scheduled an MRI for January. At least now we have some hope which as been sadly lacking in Sam's life. Thank everyone for your encouragement and the wonderful advice from everyone. It has also helped give us hope and at least a light in the darkness. Blessings and love to all. Ruth [smiley=hug.gif] |
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Title: Re: Newbie Here Post by Beastfodder on Nov 23rd, 2005, 5:31pm Ruth and Sam Heart goes out to you - but it's a lot easier to fight for what you want with a little back up. This place certainly offers back-up and support. Very best wishes |
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Title: Re: Newbie Here Post by Jasmyn on Nov 24th, 2005, 2:39pm Welcome to the family Ruth and Sam! I am so glad for you that you found this site. You will never feel alone with this condition again and here you will both get the advise and support you need to get through this. I am sorry for your loss and that Sam and you have to go through this. You both stay strong and this door is always open and the lights always on. Hugs Jas |
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