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        Supporter's Corner >> Supporter's Corner >> Hi Cootie
        
(Message started by: Ree on Oct 16^th, 2002, 7:31am)

Title: Hi Cootie
Post by Ree on Oct 16^th, 2002, 7:31am

Welcome to CH.com Cootie...(cute name) I decided to start a new topic you would have gotten lost in that other thread...
I'm one of the Ch'Angels around here.... you will find out there are many... If your hubby is showing signs of starting a new cycle it might be a good idea for him to start his preventative... and you could get on the phone with his Neuro. My husband had a random attack about a month ago and he started fighting back right away and has been faithful to his meds ( He is on Neurontin) believe it or not he hasnt had a 2nd attack... yet!!! Dont mean to sound insecure like that but we've learned as far as Cluster attacks go they are always lurking. I understand what your saying as far as change goes... it seems like we as supporters notice the changes that our sufferers go through right before a cycle starts. I dont think change is good either... with Dave its his sleep patterns... I think as supporters once you've gone through a cycle subtle hints bring back way too many memories of that cycle and you are probably right. Keep coming here and give a yell if ya need me my email is Ree16angel@aol.com good luck and God Bless Ree

Title: Re: Hi Cootie
Post by cootie on Oct 16^th, 2002, 10:09am

Hi again and thanks !!! I got hubby in for a doc's apointment today....called him at work and he was headin for anouther attack tho....it was almost 9:30 am and his new cycle seems to floolw that time am and pm...this'll be his third attack after being clean and clear almost 3 years so hope he gets the cycle stopped like last time. He doesn't go to a neurologist tho...he did go to one that helped him tremendously at first but there policy is you have to go back yearly and pay a big price or you are off there list....after that you may have to wait 3 to 4 months to get in to see the doctor when attacks come back....they told me in the meantime to take him to the hospital......what.....twice a day for 3 or 4 months !!??? Plus he operates big machinery at work so he doesn't want doped up...not that that would even help anyhow. There is a new neuro in town but he also has huge waiting list to get in..a month or so !!! My internalist doc is great and is into his patients needs and knew rite what treatments to get him started on so we have stuck with that..he's a wonderful doctor. I can't believe how many people we have ran into the past several years that suffer these types of headaches or else the bad migraines to where they are down and out and can't funtion....scarey !!! Wish him luck with the doc today....thanks again for being there.........cootie

Title: Re: Hi Cootie
Post by Ree on Oct 18^th, 2002, 10:13pm

Hi again Cootie...Yup there are alot of sufferers around our great world... we have found that out just at this one site...Keep calling until you find a doctor that will see him... Maybe the doc will remember him from 3 years ago and will prescribe for him until he sees him... fight... ask for a cancellation appointment. If need be, go to the ER. The only trouble with that is the INS co's have it now so it cost so damn much to go to the ER... Hit some of the med buttons on the left... get ready for your trip to the doc anyway... get him on a preventative and an abortive... Has he tried 02 alot of the people here have great luck with that... There are some great medicines that he could have some luck with in our case every "new" med Dave tries gives relief at least for a while... might work one cycle but not another... He is holding them back with Neurontin right now 240 mg 2X a day... and clonazepam to sleep... Good luck keep in touch... Ree

Title: Re: Hi Cootie
Post by cootie on Oct 18^th, 2002, 11:38pm

Hi again......Got hubby to the doctors and he got back with the imitrex and virapimil...doc said there are new things available but he wanted to stay with the old stuff that worked before routine....hey....whatever works !!! Geeze-zo-Petey tho we ran into anouther delima which didn't help the situation....our insurence will only cover "NINE" imitrex pills per month.that's it !! How can a person with these type of headaches only plan on useing nine pills per month....I bout had a cow !!! So they paid for the first nine and he went thru them in about 4 days and were trying to work with the doctor to call the insurence physicians hotline to explain whey he needs more then nine. Since the doc is out of town till next week (of course...what planning ech !) we had to go ahead and pay for the next box of nine ourselves which cost us $ 169.00 out of our own pocket and if this continues and insurence doesnt' agree to pay for more a month it may run as much as $ 400.00 a WEEK for us since he has two to three attacks per day for rite now !!! I am in shock.....who can afford that ? Hopefully he can break the cycle early again and be cool for a long time (wouldn't that be lovely). So anyhow....all this is giveing me a headache...but hopefully it will work out and the insurence co will ok the script. The rep for the shops insurence co said this drug may be to highly prescribed over the amount needed and why they are like this with the limit...but I dunno about that cuz seems to me it is a drug esp for headhaches which no one can control the amount of but very costly. He won't try any new meds rite now since this works...he has managed to ward off the last two days of attacks so that is a very good sign but he has the shadow headaches I believe there called off and on all day that have threaten'd to get bad. Spikey pains he said...so he knows the bad ones are still possible. I'm not real familiar with any of the new stuff at all or new med names but have been doing research reading about them. Why is the imitrex so expensive...isn't it more or less some sort of hormone ? I don't think most people comprehend what type or magnatude these headaches are to understand what the big deal is.very frustrateing but am just glad he has at least had a few days of no major attacks...but the nites not over yet.....sometimes he wakes up with them really bad and...well.....you know the rest.....but they seem to be trying to start a 'new' set time verses the predictable times of the day he gets them this time. Our insurence will not pay for ER visits unless you call the doctor first.....duh....! He also got the nasal imitrex.....anyone had luck with that ? Do you do that even if you have taken a pill and can't fight it off fast enuff.....says you can take anouther pill within 2 hours but wasn't sure if the pill of imitrex and nasal within a short time frame is cool ?? I am sorry to ask a zillion questions....thanx so much.....cootie...........

Title: Re: Hi Cootie
Post by Ree on Oct 19^th, 2002, 5:00pm

didnt the doc have any samples??? zomig is also good and our insurance company did the same thing to us... if you get a waiver they will have to give you more... ask on the medicine board how to get around it... and tell them where you are from. A lot of the other guys and girls have been able to get more meds. good luck... ree

Title: Re: Hi Cootie
Post by cootie on Oct 20^th, 2002, 2:55pm

Hi again....Well Monday the doc is supposed to call our insurence co's hotline for doctors to call in on to explain his situation with the imitrex and needing more then 9 pills a "month"...I hope they will overide the limit....doc told him they had new meds out if he wanted to try them but I think he is afraid to try anything else rite now cuz of the chance it mite not keep the headaches away or under control dureing an episode and him have to go thru one as bad as his get....does the Zomeg work about the same and do you take it as you do Imitrex at certain times when they usually strike or when you feel one starting up ? I'll have to do some reading up about it and mite be an option but for now he says he wants to stay with what he is doing 'if' we can afford to keep it up !!! I think he is afraid to swicth rite now......Thanks alot....cootie

Title: Re: Hi Cootie
Post by Ree on Oct 20^th, 2002, 6:21pm

Does he just like the pills because the zomig works just like imatrex... as a matter of fact you can get the melting pills that are great if your in the car and dont have water... they taste like baby aspirin... Dave prefers the nasal spray of Imatrex to the injections he hates needles with a passion... had a bad experience when he was hospitalized for CH during that bad 7 month cycle. I will pray that your insurance company pulls through for you... they seriously need advocates speaking out for this affliction... Its horrible... ree

Title: Re: Hi Cootie
Post by cootie on Oct 24^th, 2002, 10:43pm

Hi !!!! Just wanted to let you know we got the overide on our insurence to pay for more then the 9 imitrex pills a 'month'....shewww.....that was scarey !!!! So relieved !! He's still fighting the headaches but I think he is at the low end of the cycle cuz there not as intense cuz he has been "lucky" to more or less block the full pain level duration of each cluster the past week but he still gets alot of the shadow headaches I believe there called, so we know they are still very possible if he doesn't keep after them 'johnny on the spot' with the meds at first signs. Some have been real close tho.....all he's gotta do is forget or slip up not takeing stuff or forget to have some on him when he gets a first sign and he could go backwards with the remission I think. Been intense around here !! Thanks for this awesome site and help....I've actually sent this site to people that THINK they know what a headache is he goes thru and don't fully get the impact of how it "really" is and it has turned them around to comprehend to a total different level. Thanks fer all your help....I'll keep ya posted.......cootie.....>^..^<