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Title: WOW! Post by gem5454 on May 1st, 2007, 6:44pm Let me start by saying that I am not sure if I am releived or not. Part of me is happy to hear it really isn't an anurism and my honey isn't dying like we both were thinking, the other part feels so frustrated that there is no cut and dry solution and he will most likely continue to suffer for the rest of his life. Here is our story: About 10 years ago my honey started having these horrible one-sided headaches that would cause him to go from super tough guy to kicking, screaming, banging, cursing, pacing - if you can even call it walking - in less than 10 minutes. Always the same side, same time of year, same time of day, etc. I have witnessed in horror and terror the agony of this beast and his struggle to defeat it. For the first two years he went to every specialist he could and had every test run possible. After taking every prescription possible and ruling out every other medical cause of these horrible life-altering pains, his doctors finally reached a verdict. They told him he had a degenerate nerve and that the only possible help would be surgery with little hope of success. They led him to beleive he had baffled the medical field as no-one had seen anything like it and had no clue what to do for him. They said it would most likely get worse and probably eventually kill him. Frustrated and scared - he quit going to the doctor. No amount of pain medication ever worked, noone could do anything to help him. It seemed to come and go - at times he went 5 months or so without incident. But they would always return. I felt and feel so helpless, and frankly it is TERRIFYING to witness!!! As it must be so much worse to experience! We never kept a headache diary so I am not sure of the pattern yet, but we are starting to do that now. We thought it was over. He went a full 9 months without anything and we had both begun to thank God daily for taking it away. Until 6 weeks ago that is. Having gone so long without one, he had forgotten the intensity of the pain and I witnessed his terror and agony. The pressure just builds and builds until he is screaming and hitting himself and pushing so hard on his eye I am convinced one day it will pop out of the socket. I just sit there looking for blood to come spurting out of one of the sockets, but it never does. This last bout - which he is still in - is sending him over the edge. He is becoming paranoid and terrified to do anything for fear it will bring on a headache. You see, his start in the evenings always about 1-2 hours BEFORE he goes to sleep and then continue throughout the night even after he has gone to sleep. But the first one or two for the night happen before he goes to sleep not after. So he started thinking maybe air conditioning was causing it - or showering - perhaps it was a blood sugar problem and he shouldn't eat - the list goes on and on. I once watched him sew up his own finger with a needle so I know he isn't a wimp. To go from that to scared to bathe, eat, sleep, go outside, stay inside, etc etc etc is so terrifying!!! Especailly when the pain is so bad he contimplated ending it himself. The other night was def a 10 - just a horrible thing to watch your loved one go through. After his head didn't explode - I had to do something - so I went to webmd to self diagnose. And lo and behold there it was! His story - his pain - his symptoms - the BEAST! Here is where we are now - 10 years ago he had good insurance and now that we have moved to a different state and he started a handyman business - of course we find what we believe it may be and NO INSURANCE to do anyting about it. Does anyone know of any programs out there that may help CH sufferers with medical needs?? If anyone can point us in the right direction we would forever be indebted!!! thanks for letting me vent! I feel like we are home now! |
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Title: Re: WOW! Post by Linda_Howell on May 1st, 2007, 9:27pm Quote:
You are. I am going to send two of the best supporters over here to talk to you. I commend you for looking for a place like this for him. You are worth your weight in gold in my opinion. Linda Howell |
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Title: Re: WOW! Post by BB on May 1st, 2007, 10:01pm Hello Gem Welcome and yes you are home now and you and your honey will never be alone again. I feel every single word in your post because I am also a supporter for my husband. I have felt what you have felt, cried the same tears and experienced the same despair. However, things dont have to be like that. Once your partner/husband get a proper diagnosis ( It is very important to get a correct diagnosis ) and onto the right medication, he will start to get control back in his life. The hits can be reduced in both intensity and frequency. I dont live in US so I dont know if there is any support system for people who dont have insurance. Someone more experienced in this field will come along to help you out later. However, oxygen is the first line of abortive treatment and it can work really well to stop the headaches in their track and its not too expensive to purchase. In the mean time, you can give him lots of water to drink, put ice wrapped in wet towels on her head and neck and eye, make him strong coffee, or give him Red bull, you can also start him on magnesium and maybe other vitamins supplement, get him to maybe try melatonin for the night hit ....there are many things you can start doing for him now that will help. But most important of all, for you to be there for him. You can encourage him to come here and talk to other clusterheads so that he would get the support from here also. God bless and take care. Annette |
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Title: Re: WOW! Post by Jackie on May 2nd, 2007, 8:38am Hi Gem.... First off thanks for not giving up or giving in....you are a great supporter. Bless your hearts.....10 years of the unknow is horrid. Now....can you find a good doctor that will help. I saw that you don't have insurance. Some doctors will give out samples. One of the first things to try is oxygen therapy. 02 is relatively cheap, has no side effects and is the #1 abortative for may sufferers. If you can find a good doctor, and get him to give you all a proper diagnosis, here's the deal.... Hubby will need a "preventative" drug. Please study the board here and on OUCH so you'll know ones that have been used and are good for many. He will also need an "abortative"....that's where the oxygen comes in. There are others but as I mentioned 02 is a good one! There are many home remedies... BB menetion some good ones. My hubby does well on HOT STRONG tea too. We've also used Dramamine (motion sickness drug...over the counter). It allowed him to sleep thru the night sometimes. However....only use it for a very few nights in a row. Read, read and read....educate yourself the best you can. Ask questions and we'll try to help. You are and will always be hubby's best advocate and support. Perhaps he can join the boards too. Talking to other sufferers is a great help. Hang in there, Sweetie.....we're here and will help with what we can. Good Luck, Jackie |
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Title: Re: WOW! Post by Erika on May 2nd, 2007, 8:40am thank you so much !! I have a couple of questions now How do you find a doctor that has heard of this? We have gone to so many doctors in the past and noone ever mentioned 'cluster headaches'. Is anyone here from the Daytona Beach area (we will travel if we have to) in Florida? Any recommendations for a doctor? Coffee? Really? And to think - he actually was thinking caffiene was CAUSING them. 5 'hits' last night - exhaustd today but he will be ok until tonight when it will surely strike again. oh - and I found out the hard way that HEAT is the WORST thing you can do for him. I tried wrapping his head in a hot towel and I thought I had killed him. So we will try ice. that is so against everything my brain tells me will work - I am gong to the store right now to stock up on the other suggestions.... redbull, magnesium, B vitamins, water, and lost of coffee. How do you get melatonin - what is that? and I am sure you need a doctor and prescription for the oxygen - so that will have to wiat until we find a doc. thanks so much for all of your understanding and support! He signed your guest book - which is saying A LOT for him - who HATES a computer - and also joined this website, but we haven't shown up yet under the guest book or 'where we live'. He is ready to talk on the computer - which led me to believe he really was dying! what a LOT to digest! |
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Title: Re: WOW! Post by Jackie on May 2nd, 2007, 8:56am Go to the OUCH site (button on the left)....I'm thinking there is a list of doctors there....by state. If you have a good GP, and take all the information from here, they might be able to help you. Has hubby ever had an MRI? Jackie |
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Title: Re: WOW! Post by Erika on May 2nd, 2007, 9:13am on 05/02/07 at 08:56:31, Jackie wrote:
Yes he had three of them I am so surprised by the amount of information available on here - I can't seem to leave the computer because there is so much to read. I looked on the OUCH website and there is a doctor about 2 hours from us - I am going to see what magic I can perform and get him in if I can. I just hope he doesn't have to start from scratch again - since it has been like 8 years since he last went to a doctor. my hubby has the opinion that doctors are 'practicing' medicine - until now he wanted to wait until they were done practicing - but now he just wants HELP! |
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Title: Re: WOW! Post by ClusterChuck on May 2nd, 2007, 9:29am DAYUM, hun, the two of you have been through the wringer!! I am not a supporter, I am a sufferer. First of all, welcome aboard, and secondly, I have to say, you don't know how important YOU are to him! A good, caring supporter is the BEST thing he can have. Thank you for being there for him. You are AWESOME! Next, let's look at the oxygen issue. I hate to see him go without one of the best abortives out there. Oxygen can be purchased, without a doctor's prescription, IF you get it from a welding supply house. Just don't tell them that you are going to use it for medicinal purposes. Welding oxygen is just as safe and pure as medicinal oxygen. It is filled from the same source, and is just as pure. If a welder uses oxygen that is not 100% pure, he ends up with weak and defective welds. So have no fear of using the welding oxygen. Next he will need a non-rebreathing mask, that can be purchased, over the counter, from most medical supply houses. He will also need a regulator, that goes up as high as 15 LPM (litre per minute). Oxygen is what keeps many of us somewhat sane, and able to carry on. Good luck, and again, as a sufferer, THANK YOU for being there for him! He is truely a lucky guy! Chuck |
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Title: Re: WOW! Post by Guiseppi on May 2nd, 2007, 10:52am My wife saved my sanity by finding this site for me, you are a saint for hanging in there with him and for finding this site. We can't cure the headaches or guarantee he will be pain free but we will give him the tools and knowledge to routinely kick the beasts butt. I'm with Chuck on the oxygen. It's cheap and a great first line abortive. Go to the OUCH site and see if they have some decent headache doctors in your area. Until then keep some cans of red bull or monster energy drink on hand. Have him chug one at the first twinge, works to abort for many. And get him to sign on to the sight. We be dying to help him!!! Guiseppi |
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Title: Re: WOW! Post by Linda_Howell on May 2nd, 2007, 12:13pm This link will take you to a page of Sufferer reccomended Dr.s I am not sure how far some of these are from where you live, but it's a start. There are no addresses or phone numbers so you will have to look them up in a phone book. Hope this helps. http://www.ouch-us.org/chgeneral/doctors.htm Linda |
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Title: Re: WOW! Post by BB on May 2nd, 2007, 5:38pm Hello again There are heaps of very good information on the Board, just spend some time reading up on all of the threads. Brew some nice strong coffee and make yourself comfortable in the chair and read on. Regarding medication to control CH, a few things are a must to try, as they work so well for many. 1- Oxygen : cheap and fairly safe, and can abort an attack in mins. Make sure you have a regulator that can go up to 15L/min and a NON-rebreather mask. The best is the clustermasx which can be bought online at www.clustermasx.com. Its designed and manufactured by one of our own Cher, Ben. He is very helpful too. 2- Triptans: such as Imitrex, Zomig, Maxalt etc, also can abort the whole thing in mins. The best is the injection, nasal spray is a bit slower and tablet is pretty useless as it can take up to 1 hr to work. 3- Prednisone taper: for bad or stubborn cycles, can take up to 75 mg per day, tapering off over 5 to 7 days to break the patterns. You need to talk to your doctor about this. 4- Verapamil : doses may vary from 480 mg per day up to 1000 mg, needs to be monitored but can work very well in blocking most of the attacks. 5- For night attacks, try Melatonin from 3mg to 15 mg per night. 6- For day shadows and little ones, try Red Bull , oxygen, strong coffee etc. 7- During an attack, feel around the neck to see if you have a cluster lump, a hot tender swollen ganglion under the skin which is tender to touch, can be on back or side of neck, if you have one, apply ice there, it will help a lot with the pain. It may be inside your mouth, back of tongue on the roof of the mouth too, if its there sucking on ice helps. 8- Come here and share with us your life in cycle, whinge, moan, celebrate .... whatever, we will be happy to listen and give you any emotional/mental support that you may need. 9- If you like to try new things, look at Kudzu, Taurine, Shrooms etc also. 10- Other goodies to be discovered at a later date Take care and wishing you many PFDAN ahead. Annette |
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Title: Re: WOW! Post by BB on May 2nd, 2007, 5:46pm Forgot to add, melatonin is a supplement, which helps to regulate sleep, its low during a CH cycle. You can purchase it from a health food store. It comes in 3 mg tablet. Try first with 6 mg per night half an hour before bed, for 3-4 nights, if it helps him to sleep better and reduce the night hits then continue. Remember that it may not work immediately, he will need to stick to it for at least a couple of weeks to get the full benefit. You can slowly increase the dose to 9 mg then 12 mg if needed to. Some people would go as high as 20 mg but the usual dose is 9-12 mg. The main side effect is grogginess the next day just like a normal sleeping tablet. If this is too much then reduce the dose. You need to increase or decrease the dose slowly 1 tablet at a time every 3-4 days only. Its most important to get the correct diagnosis but from what you have posted, it sounds like CH alright. Ask your husband to just start a new thread in any of the Board and we will all come to talk to him and help him in any way we can. Hugs Annette |
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Title: Re: WOW! Post by Rosybabe on May 2nd, 2007, 5:58pm Hi Erika! God bless you for being such a great wife! I do not have insurance either (at the moment) but I got a hold of the welders oxygen and I got the regulator through ebay and the mask by Clustermasx.. My mom brought me Cafergot and Zomig and Maxalt from Mexico and that is how I handle this past cycle... Cafergot is fairly cheap but He has to take it early along with the O2 to make it work... melatonin and benadryl at night helps a lot with the night hits... If you are taking him to see a Neuro be sure to mention to him that you don't have insurance so he can give you a little supply of samples... Good Luck and make him to come over, he sure needs to talk to other sufferers. :) |
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Title: Re: WOW! Post by Angie on May 3rd, 2007, 8:20am Hi Erika I am a supporter wife as well. Read everything here it will help a great deal. When Barry started his new cycle in November we came to this site and found we were not alone. We learned about different Meds and the best abort out there O2. This site has given back our life and it will give you and your husband's life back as well. Hang in there Angie |
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Title: Re: WOW! Post by Erika on May 3rd, 2007, 9:14am Oh my - after three days of not leaving the computer I am gaining quite a knowledge of this horrible life altering condition (which doctors who have been highly schooled are BAFFLED BY??? - just make me wonder!). Last night was a good night - if you have to compare it to the night before. Question - how much Red BUll is TOO MUCH? He chugged one at 5:30 (was shadowing early - no hit) and then at 7:30 (BIG shadows - fear evident all over his face, eye drooping - NO HIT)and then another at 9:30 (waited to see if really getting shadows and afraid he was just prolonging a hit which normally makes the hit worse, but finally gave in around a 4 - starting ramping up, but 15 mins later - OVER)- but then he was afraid to chug another at 12:00 so he took a hit - about a 6 or 7, but it, also, only lasted about 15-20 minutes, which is about half the time as normal. Exhausted he went to sleep and feared he would need the last Red Bull in the middle of the night, but nothing happened. We only bought a four pack because they are so gross and we didn't know if it would work. I am AMAZED that it actually seemed to work - at least last night it did. He was just baffled, and so RELIEVED!! He actually smiled and LAUGHED for the first time in 6 1/2 weeks last night! So I know he is relived also JUST by finding out what he has. I see a LOT of people who come here not sure if this is what they ahve or not - not us. This is the first time I have seen his EXACT symptoms and read reports of others who are suffering just as he does and use all the same verbiage to describe it, adn do the ame things to deal with it. Even though we have not been diagnosed - I KNOW this is it. No question. I watched a video of a guy in an attack and felt like I was looking at my husband! I guess if you have it for sure, you will KNOW IT! not question it at all - this is IT! I am amased at the number of people who are resorting to all sorts of things to help them. I mean, yes, I have found my husband in the middle of the night with a handful of Benadryl, Comtrex, aspirin, Ibuprofen, and Exedrin which he promptly CHEWED up all together - it didn't work, but he did it every night for a while praying it would work. But I can't imagine how some people decided to try some of the suggestions I've foudn on this and other web sites. Then again - in the middle of a hit - as long as it isn't a 9 or 10 - (at which point he is unable to do much of anything except rock, bang, push, rock, speak in some tongue language where the only recognizable word is the F word, rock, kick his legs and feet, push his eye through the other side of his head, bang his nostril or temple, etc, etc). my husband would be willing to drink, eat, smoke, sniff (through the working nostril), anything he could get his hands on if someone said it might work. And for everyone that wants to talk to and with him - He does not type. I signed him up an account but he is participating through my posts and reads - or has me read (in the evenings he is PARANOID to do ANYTHING - even thinks if he tries to read it might trigger an attack) everything to him. He talks through me and for the first time in our relationship - a very long relationship - this is the first time he is involved with a computer AT ALL. He wants me to THANK EVERYONE - and the more we read - the more questions we have. I think once this bout is over for a while and he goes into his remission period - God I pray that to happen and happen SOON - he will actively participate more, but for now, he just doesn't type. Maybe I should buy him one of those dictators that would type for him so he just had to talk. I know it would be a help for him to talk to you directly, but rest assured, he is as SUCKED in as I am. I am also amased by the number of you that think I am doing something great by being here for him. How could ANYONE witness this beast first hand and NOT??? I wouldn't wish this on the most horrid person in the world!! This would cause me to rethink a divorce if I was facing one, I just couldn't leave someone to face this alone even if I dispised them. We have more questions. let me firm them up and I will begin to fire them off. In the meantime - you are all going STRAIGHT to heaven! You are saving our lives! He is a new person today! I see hope in his eyes and a renewed strength in him that he was RAPIDLY losing! I will forever be indebted! Rest assured I am on board for a LIFETIME - no matter what! I will give back!! again I say - WOW, just WOW! |
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Title: Re: WOW! Post by Margi on May 3rd, 2007, 10:12am Erika, hi :) I'm so glad to hear he had a good night! I watched this thread yesterday and saw that you were getting some awesome advice - aren't folks wonderful here? I smiled when I read your post this morning. We were exactly where you two are at when I first found this website in 1998. Oxygen and the water treatment literally saved my husband's life. The people that were already here rallied around us and gave us a much needed lifeline and have become lifelong friends. I think just even finding others like ourselves was so crucial to our survival. NO one else can relate to this life we are chosen to lead and, you're so right about that video that Tony made (and also the one of Chuck's) - the commonalities are startling amongst sufferers. Especially to those of us that are relegated to helplessly observing the horror. Right down to the chewing of pain relievers. To a non-clusterhead person, that one little act just seems unbelievable but...if you have cluster headaches in your life, you intimately understand the levels of desperation we all reach. I think the first time I saw my hubby munching on a pain reliever, instead of swallowing it, I realized he will do ANYthing to stop a hit. Anyway, I'm rambling and not really saying much of anything am I? :) Just happy to hear that you and your man have found this oasis and that you're doing such a wonderful job of being his advocate. I'm like you though - to me, it's second nature to want to help. You'd be surprised at some of the horror stories out there of non-caring supporters though. But that's a whole other subject! Keep up the great work, Erika and if you ever need a shoulder, please feel free to write me off the board. I'm at moxie_miss@hotmail.com. I used to chair the Family Services Team here so I've talked to hundreds of supporters. Sometimes we just really need to hang with each other and compare war stories. Linda Howell has now taken over that position and she has a fabulous team assembled and they are available as well "off the board". Grab hold of all these ropes and hands that are extended to you, girl - it's what we're here for!! Hugs Margi |
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Title: Re: WOW! Post by Erika on May 3rd, 2007, 12:59pm and what an amasing group you are I have cried several times over the past three days - both happy tears and sad tears - over the stuff I am reading |
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Title: Re: WOW! Post by Jackie on May 3rd, 2007, 3:22pm I'm so happy to hear you all had a fairly good night.... :D You ARE a wonderful supporter!!! There are some people who can't deal with it.....really. We're always around, Sweetie.....so don't be afraid to lean on us. There is safety in numbers. I think you've already figured that one out. :D Please keep up posted on how you're doing. Wishing you all well.... Jackie |
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Title: Re: WOW! Post by ClusterChuck on May 3rd, 2007, 10:59pm on 05/03/07 at 10:12:09, Margi wrote:
Erika, that lady, Margi, is one of the GREATEST on this board! She CAN be a PITA, at times, but all you wimminz can be ... heehee ... I am glad he is getting some respite from the beast! And thank you again for your amazing support to him! Chuck |
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Title: Re: WOW! Post by Margi on May 4th, 2007, 10:25am LOL Chuck. Thanks. I think. :-* |
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Title: Re: WOW! Post by Erika on May 4th, 2007, 10:48am Kind of a rough night last night - not horrid, but certainly not PF >:( I think the night before he had such a good night because he has finally found others who suffer the same as he does and just knowing can sometimes raise moral enough to put you into a different mindset. As I have seen some attest that attitude is your first line of defense. Now I am not saying he is ever able to 'talk himself out of an attack' - ha! but knowing what is going on and that nobody so far has said that someone's head/eye actually exploded so the fear of that kind of goes down somewhat and when you don't know what is going on the fear alone can make you panic and I beleive that could escalate things for him. I am just speculating here....... Also it probably doesn't help that our whole town is covered in smoke from these stupid raging wildfires! They are giving me a normal headache, (please don't yell at me, I promise that wasn't a complaint - aspirin works fine for me) and I wonder if that may have an effect on CH sufferers. He tried the melatonin (hesitantly I might add because he was afraid of a hang-over effect today and he has to drive over 500 miles today) and after he fell asleep - I stayed awake watching him. He almost looked like he was going to have an attack about 1 1/2 hours after he went to sleep, but he never woke up and only rolled and moaned for about 3 minutes. He had chugged several energy drinks and for all I know he was just dreaming about the attacks since we seem to be so focused on this website and have read so much lately. I think he is on a down cycle but ?????? we have never kept a diary until now so ???? I can only pray and pray and pray!!!! He is going for oxygen today from the welding shop. I already looked at the website for the mask, checking ebay for a regulator, crossing fingers and hoping for a miracle! SOMETHING has to give and I REFUSE to let it be our sanity!!!!! just updating cause I never had anyone else to talk to about this stuff - noone ever understood the intensity and could never understand how low it can bring you - and a family. also - he said to me this morning: I think CH is a condition created by the devil to make an honest man cross over to evil, ironic how the very intensity, though, will make even an atheist pray. Guess Satan wasn't counting on that. |
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Title: Re: WOW! Post by Margi on May 4th, 2007, 11:04am word of advice, Erika? Don't stay awake watching him. You need your rest too. It's an easy pitfall for a supporter to enter but sometimes it's like having a newborn baby - when they sleep YOU sleep. Don't forget to take time for you, ok? I know a cluster cycle is all consuming but you have to remember to keep yourself recharged too. Even if it's just a half-hour while he's sleeping (yep, I'm gonna recommend the bubble bath/glass of wine thing yet ONE more time!). Go for a walk or do something physical. You've got to find an outlet for YOUR stress too - he needs you to be able to stay centered. As to the "dream time" attacks - I think that's pretty common. It was probably a shadow that just didn't have the jam to break through the sleep. My hubby does that too, even out of cycle. He will rock his head, cheek to cheek on the pillow and I've come to learn that those are mini-attacks that just don't ever materialize. OK, yeah - I'll admit it, I've stayed awake watching him too. I doubt there's a supporter here who hasn't. For what it's worth, we had a pretty bad time with the melatonin and we weren't able to give it enough of a chance to work because Mike couldn't get through the increased activity it caused for him. So, if that happens for your boy, I think it's a "re-regulating" period or something, so don't panic. If you can't find the regulator, you CAN just have him 'huff' it from the nozzle - not a great delivery method but it can work (Mike did that for a year until we got a regulator from Jonny and it still had about an 80% effective rate). If you can get the O2 today, don't delay his trying it for waiting on a shipment. We have a set of welding torches in our garage and Mike just inhaled right from the nozzle, sometimes even through his mouth. Most new things you throw at cluster work really well at first and you can capitalize on that fact in the days it takes for the regulator to reach you (meaning, the huffing method may not work for long for him, but it most likely will at first). |
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Title: Re: WOW! Post by thomas on May 4th, 2007, 11:15am Hopefully the melatonin will help at night. Try adjusting the dosage to find just the right amount, anwhere between 3-9 mg should work. And I take mine about an hour and a half before bed - no hangover. Magnesium during the day is also another great supplement that has had lots of positive effects for me. Wishing you both the best, he's lucky to have you in his corner. It's a hard battle to fight but having some one genuinely caring and trying to find something/anything to help is a blessing. |
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Title: Re: WOW! Post by Angie on May 4th, 2007, 11:22am Hi Erika I have also stayed up watching Barry for the signs. He usually gets restless and squinches(sp) up his eye on the right and starts to rub it. At this point he usually wakes up and now that we have O2 in the house he can abort the attack within about 5 to 10 min. Now I go to bed and sleep, I try not to stay awake for I need my sleep as well. Erika we are all in this together and together we help each other. Angie |
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Title: Re: WOW! Post by George_J on May 4th, 2007, 11:51am I'll repost this for Erika and Bill, since it seems an appropriate place to do so. I hope no one minds: Learning to cope with a hit is as valuable as any medication. No matter what medications or treatments you use, sooner or later you're going to face a hit with nothing but your naked brain. It's common for a CH'r to panic at times like these, and to act in ways that--while not increasing pain, increase the effects and the perception of pain. Like anything else in life, experience counts. Most of us who've had these for a long time have had to learn how to cope with a hit on our own. I hope that what follows may be of use, and may quicken your ability to take a hit with some measure of aplomb. Try these things--if they work for you, good. If they don't work--well, what have you lost? First a couple of caveats: This will most likely not shorten a hit, nor will it decrease the actual pain--only the perceived pain. It probably won't work with anything higher than a Kip 8--the intensity is just too high to concentrate on what you're doing. There is nothing mystical or spiritual about this--it's simply a way to calm yourself and to decrease your perception of pain. First, accept that you're getting a hit. Denial won't help, and struggling won't help. Go to a quiet, dark place so you can concentrate. You want everything in your visual field to be fuzzy and diffuse. Sharply defined objects can serve as a metaphor for the focus of pain. Although many clusterheads are not light-phobic, darkness helps. Sit upright. As you know, it's not possible to lie down. Don't pace, don't fight. Extremely difficult to do, I know, but it's worth it. Sit quietly. Begin to breathe slowly, rhythmically, and deeply, whether or not you're using oxygen. This will serve to calm you, and will increase the oxygen content in your blood. Consciously relax the individual muscles in your face, scalp and neck, one by one. Continue to breathe slowly and deeply. Inside the pain, there is a focal point--a knifepoint--most likely behind your eye. Focus your attention on it, and locate it. Got it? Now gradually shift the focus of your attention to an adjacent area on the headache side where the pain is less intense. My personal favorite is just under the skin on the forehead. Your attention will shift back to the knifepoint again and again, but don't let that upset you or discourage you. Focus your conscious attention away from the knifepoint. Next and last, begin to move in some rhythmic manner. I turn my neck slightly to "click" over the knot that forms at the base of the neck, over and over. Others rock back and forth. One person I know of on this board hits his leg with his fist. Be calm. Don't think about much of anything, and above all, don't worry. The result is a trance-like state where the pain still exists, but your attention is less focused on it. Sooner or later, the hit will end. You know this. Remember. There is life between the hits. Again, this won't end a hit, nor is it a cure--simply a coping technique. I think of CH hits as if they were storms. There's nothing I can do about them, so I've learned to get through them as best I can. Learning to cope has allowed me to build a crude little shelter out of burlap and sticks where "I" can hide from the worst of the weather. Talk to Charlie about "Dr. Wright's Circulatory Technique" as well. |
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Title: Re: WOW! Post by Margi on May 4th, 2007, 12:40pm awesome, George! I have to say, this has been Mike's biggest defense in the cluster battle: teaching himself to remain calm through attacks. Probably the hardest thing he's ever had to do but he's finally mastered it and his cycles are SO much easier on him now. Don't get me wrong, they still suck but he just won't allow himself to lose his cool anymore. Oxygen has really helped him with the process. Getting upset increases blood pressure and it escalates all on its own during an attack anyway. I think, once he did that math, he really gained ground on the Beast and has renewed faith in himself that he will get through whatever is thrown at him. Timely post, George. :-* |
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Title: Re: WOW! Post by thomas on May 4th, 2007, 12:41pm Yeah, it's helped me a LOT as well. |
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Title: Re: WOW! Post by Erika on May 4th, 2007, 1:31pm MIND?? Heck NO - feed me more!! I feel like a hungry sponge and I just can't seem to get ENOUGH information so 'funny' that these were the suggestions you see I kind of felt like a midwife a few nights ago (losing track of time here) using Lamaze techiques to try to help him - complete with the relaxation of each muscle one at a time, deep breathing, focus point somewhere else, etc etc etc (anyone here whose had a baby or witnessed birth should know what I am talking about - it was all I could think of to try) it was my first line of defense for him that first night because it was the first time he was having an attack that I KNEW he wasn't going to die and I could focus on something other than death. He doesn't even remember most of it - too big of a hit , but I just calmly kept speaking to him and tried to keep him focused. Until I thought my speaking was hurting him, then I just breathed for him. Tried to will my calmness across the room to him and even pointed my hands out to him like I was trying to cast a magical spell - how silly! After the attack he thanked me, so I guess on his end it seemed to be of some help - but from where I was sitting it looked useless. He says my voice didn't bother him that noise doesn't seem to matter one way or the other, and he doesn't really remember most of it - but he always heads to the bedroom at about a 3 or 4 anyway. So I never know if he is just being nice and doesn't want to hurt my feelings cause he knows I am just trying to help. also - he can't stand to be touched during an attack - actually at anything other than a minor shadow. Once it is apparent to him he is going to have an attack - it is hands off for me. So holding ice for him isn't working and he jsut can't figure out how to hold it and focus on what he has to do to get through it. Also - no massaging or rubbing his back or even holding him - jsut sit helpless and watch in horror! And I am not strong enough to keep him from hurting himself so I can't even try. He mostly, though not always, sits with his legs off the side of the bed doing the rocking and leg bouncing and he finds that if it gets real bad - he can't even apply pressure anymore to his eye - so he puts pressure on the 'good' eye and 'thumps' (hits HARD) his stuffed nostril in a rythmic motion in an attempt to 'move' the pain as he tries to describe it to me, convinced if he could get it to drain all the way - or move to the other nostril - that the pain will go away. He has never been successful but it says it gives him something to focus on. All the while he looks like he had a stroke in his left eye and it pours gel-like liquid out of it, as does his left nostril and he swears his left ear, too. He also does this 'clucking' sound in the back of his throat. He used to think his teeth were going to fall right out of his head on the upper left side where the hits occur, so he says the clucking is to keep his tongue from touching them so they don't fall out. Now that he knows his teeth aren't going to fall out - I think it is just habit - done it for so many years as a way to cope - it is also kind of rhythmic unless the pain peaks then it is kind of an evil grunt. oh - and he tries rolling his head around like he is going to crack his neck, has even pulled real hard on it thinking that of only he could get it to crack - all would be well. I used to think he was going to be the first medical case where someone broke their own neck by their own hands. I guess it is all a learning process |
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Title: Re: WOW! Post by Bob P on May 4th, 2007, 1:40pm When things are really bad - prednisone! A medrol DosPack stops my attacks instantly. Take the 1st days 6 tabs and no more attacks for at least the next few days of tapering off. Regular prednison takes 3 or 4 days to stop the attacks but the taper is longer so you are pain free longer. |
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Title: Re: WOW! Post by Margi on May 4th, 2007, 1:41pm Erika, as to the ice....get one (actually, we have three) of those gel pack thingies that never really quite freeze. Keep them in the freezer until he needs them and stick one inside a cloth gift bag or just a tea towel. Tell him to lay it right on the back of his neck at onset, right over his cluster bump. My Mike prefers to cluster alone, he usually goes to the basement to sit with the O2 tank and just rests his ice bag on the back of his neck, tucking it inside his collar. Ice, if used correctly, really can help. It fools the brain into thinking it needs to rush to warm that area up so it can be a temporary pain distraction. Or, if he lays it on his face/cheek/eye, it also helps cool that pesky trigeminal and/or vagus nerve. Also get him to chug a glass of ice water if he can. Cool him from the inside out. You're a brave girl to stay there with him, watching him. A lot of sufferers don't like that. I always stay within earshot because over the years I've learned to be able to tell when it gets too much for him and he needs a hug, but for the most part, I just let Mike lead and don't try to stay with him. |
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Title: Re: WOW! Post by Maffumatt on May 4th, 2007, 2:06pm Erica, just a tip on posts, skip a line between paragraphs, it makes them easier to read. BTW, you are doing a great job, keep it up. |
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Title: Re: WOW! Post by Margi on May 4th, 2007, 2:30pm Thank you, Maffu....my old migrainey eyes are having a problem with that too. :) No offense intended Erika, please know that - some of us out here do have probs with screen stuff. |
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Title: Re: WOW! Post by Gator on May 4th, 2007, 3:13pm Hi Erika. I sure am sorry to have to welcome you here. Your husband and you have had a tough row to hoe, but you have found a home where everyone understands and just that helps enormously. I'm glad you are soaking up all the information available. If you need help finding anything, let us know. There are some world class researchers on this website. Since you don't have insurance, if you need assistance is getting your meds, the Partnership for Prescription Assistance website has links to hundreds of programs to help people get the meds they need. Check them out here: https://www.pparx.org/Intro.php I hope his cycle is winding down and never comes back. In the mean time, keep reading and asking questions. Knowledge is power over the beast. Again, welcome home. Mike |
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Title: Re: WOW! Post by alienspacebabe on May 4th, 2007, 9:03pm Hi Erika. Welcome! Thank you for being here and supporting your husband. You asked about medical info when you don't have insurance. WalMart has a $4.00 generic prescription program - both lithium and verapamil, as well as prednisone are on the $4.00 list. http://www.walmart.com/catalog/catalog.gsp?cat=546834 Lizzie |
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Title: Re: WOW! Post by Erika on May 4th, 2007, 9:10pm thank you so much for all of the information And no offense taken - just tell me how to help you help me (ie spaces between long winded sentences/paragraphs, etc) and I'll do it I never relize how long my posts are until after they are already posted - even makes my eyes swim - sorry about that! |
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Title: Re: WOW! Post by Mosaicwench on May 5th, 2007, 9:42am Also - no massaging or rubbing his back or even holding him - just sit helpless and watch in horror! Welcome Erika. I know the above statement well - I'm a supporter going on 16 years. I can't add anything of substance to what all the others have written, just wanted to pipe up and say hello and most importantly, YOU'RE NOT ALONE. The advice here is spot on - take what works for you and leave the rest. Good luck on your journey. PM anytime. |
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Title: Re: WOW! Post by Kontrolr on May 5th, 2007, 12:58pm HI Erika!!! just hoping theres been alot of useful infromation to you up there!! Im still kinda new so i wont touch the subject with what works yet! I just wanted to comment on the support for your husband!! thank you for being there for him! You truly dont know how much we appreciate it! Oh yea if if my wife ever reads this i never mean all the nasty stuff i say or do during an attack!! I try...... |
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Title: Re: WOW! Post by Erika on May 5th, 2007, 2:05pm Thank you all for your warm welcome. There aren't enough words to express how very grateful I will always be to each of you this society we live in has taught us that most people just look out for #1 with no worries as to the effects some actions have on others. Not here. I am humbled and completey amased and FOREVER indebted!! You are giving us back our life! You have done more for us than you will ever know! |
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Title: Re: WOW! Post by Jackie on May 5th, 2007, 4:21pm Hi Erica... So....how you all doing today? Just curious..... :) Jackie |
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Title: Re: WOW! Post by Margi on May 5th, 2007, 6:22pm on 05/05/07 at 12:58:43, Kontrolr wrote:
We know that, sweetie. We supporters have pretty tough hides. |
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Title: Re: WOW! Post by Erika on May 5th, 2007, 8:32pm on 05/05/07 at 16:21:58, Jackie wrote:
truthfully? I feel like I am on a roller coaster...... I think we are both in the let down stage that comes after such a high - it is hard to explain I think. We were both so elated and up about it for the first time, but reality is still what it is and once some of that wore off --- am I making any sense? Don't get me wrong, we are still miles above where we were, but it kind of has a way of smacking you in the face - ya know? The energy drinks seemed to be such a great help at first - not as much now, though they still seem to help with the duration and intensity. Or since we never kept a diary whose to say it wouldn't have been that way without them. They just aren't stopping them like they seemed to a couple of times. The extra magnesium is taking a little toll. I guess because he took so much that first day. I tried to tell him, so on this he will just have to learn the hard way. Gotta love him though - stubborness and all! But on the up side - he has slept two nights so far without being awoken by them. The melatonin doesn't seem to have a hangover effect on him, and so far no ill side effects. I am not convinced that it is the melatonin that is helping here - but what the heck do I know. He is only taking 3 mg. still no oxygen - I know don't yell. It may seem that he is just a glutton for punishment, but that isn't the case. He just couldn't take everyone's word for the welding stuff being safe to use so he had me do a bunch of research on it. Please don't take offense, I didn't even have to admit to that, but I already feel like a family is forming and I one of those that gets myself into trouble all the time for being too honest. So on that line, we would be fools not to research it. I hope no offense is taken. We are getting it Monday. :) ok - rambled enough for now. I am sure this is another book. Thank you all again!! Erika |
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Title: Re: WOW! Post by Jackie on May 5th, 2007, 9:00pm I hear what you are saying, Erica....some days are just better than others...hang in there, Sweetie... Oxygen will be your/his best friend. I'm really anxious for you to get it. Don't be afraid of the welder's 02....it all comes out of the same tub.... :D Be well.... Jackie |
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Title: Re: WOW! Post by Margi on May 6th, 2007, 8:10pm I hear you, Erika. I was the same freaked out way about welder's O2. So much so, that I called 911 and asked for Poison Control. Seriously - do that. Or better yet, get him to do that. They will tell you it's the same oxygen, welders or medicinal - it's the same grade. It's just the delivery method that is different. For Mike, he huffed it through the nozzle on the welding torches and the risk there is tearing lung tissue (but at that point, he didnt' care). Get a regulator and a mask and you're good to go. Print this post out for your boy. Let him rest on the experiences of those that have gone before him and lived to tell about it. Hugs to you both. |
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Title: Re: WOW! Post by Erika on May 15th, 2007, 2:23pm ok - sorry I have been away so long. Work had me swamped and unable to use the puter for personal reasons - the nerve, lol I am VERY familiar with huffing oxygen now. He bought the tank from a welders shop - the tank was a bit pricey, but cheap to refill. However, we are having a time trying to fit a regulator on it. I received a GREAT 58 page information booklet on O2 and have been reading it ever since to familiarize myself with what we need and all, but it is harder to find than it seemed. Medical supply shops won't even talk to us without a prescription and lots of pages I found on the internet won't ship what we want for the same reason..... His headaches are still 'visiting' - unwelcomed! He is still taking the Melatonin, upped it to 6 mg a night - and the energy drinks - 3 or 4 a night, and the magnesium and b vitamins. Then he has to huff oxygen - not working too well this way, but he does it anyway. I am sure once we get the right equipment it will be better, but how do you get the right equipment? I guess the obvious is 'get it from a doctor' - but no luck in that department yet. I am scared to death to use the toaster in the mornings cause I am afraid the house is still full of some pure oxygen and frankly - that stuff just scares the crap out of me. So I open up all the windows and wait an hour each morning before I toast anything. He thinks I am being too cautious but I don't think there is such a thing, lol. not that it is funny - but actually it kind of is. Is anyone else using welder's oxygen and if so, if you could point us in the right direction we love to hear from you. Thanks, Erika (and Bill) |
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Title: Re: WOW! Post by Jackie on May 15th, 2007, 3:48pm Erika, Have you checked E-bay for regulators? Jackie |
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Title: Re: WOW! Post by ClusterChuck on May 15th, 2007, 6:14pm http://cgi.ebay.com/BRAND-NEW-OXYGEN-REGULATOR-CGA-540-FITS-H-T-Cylinders_W0QQitemZ120119850792QQihZ002QQcategoryZ11819QQrdZ1QQcmdZViewItem That is the type regulator that you need. I am trying to find a "buy one now" listing. Good luck, and O2 is AWESOME !!! Chuck Edited to add: Here is one that has a buy one now price, AND it has an attached humidifier: http://cgi.ebay.com/VICTOR-MAI-540-OXYGEN-REGULATOR-REPLACEMENT-JAR-15LPM_W0QQitemZ130114110106QQihZ003QQcategoryZ11819QQrdZ1QQcmdZViewItem EDITED AGAIN to add the link for the BEST mask out there, called a ClustermasxTM. It is designed and sold by a fellow clusterhead. He in in UK, but I usually receive my mask within three or four days. It is $25.00 USD, and worth EVERY penny! Anyhow, here is the link: www.clustermasx.com |
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Title: Re: WOW! Post by Erika on May 15th, 2007, 11:19pm on 05/15/07 at 18:14:40, ClusterChuck wrote:
Thank you!!!!! I just bought it. Bill told me to be sure and say thank you from him, too! We can't wait until it gets here!!!! thanks again - to all of you on here! |
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Title: Re: WOW! Post by ClusterChuck on May 15th, 2007, 11:45pm on 05/15/07 at 23:19:12, Erika wrote:
GREAT!! I can't wait for it either!! Make sure you tell us his results. Bill, you are very welcome! Chuck |
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Title: Re: WOW! Post by Erika on Jun 27th, 2007, 4:30pm It has been a long time, but my computer is broken so I have not been able to visit with you guys You have been in my thoughts and prayers everyday though, and not one second goes by that I don't thank my lucky stars for bringing me to you :) Bill is doing excellent! I wish we had known about oxygen sooner. Shortly after starting the oxygen - he became totally PF. Looks like he backed the beast into a corner for now.... Here's hoping he stays there for a LONG time. The stuff we bought off ebay fit perfectly and everything works like it should!!! Thanks again!!! I will be checking back here as soon as I get a new computer. My office tends to frown upon using the computer for things like this, but I couldn't go any longer without letting you know how we were doing. Thanks to all of you for your support and all of your years of wisdom. Our lives have been forever changed for the better and we are now armed to fight back! And for now it seems we have won this battle in the ongoing war. Let me know if anyone needs anything. Or if there is anything I can do to help someone else!! Erika (and Bill) |
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