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Title: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by kelly on May 16th, 2002, 1:11pm Hi All MEDICATIONS ********************* 1. 3- 500mg depakote ER at bedtime 2. 9- verapmail 80 mg 5 morning 4 bedtime 3. 2- 100 mg topmax 1 at nght 1 bedtime 4 2- K-DUR 1 night 1 bedtime 5. 3- clonazepam 1mg 1 tabx2 per day 1 at bedtime 6. 2- alprazolam .25 x2 per day 7 Endocent 10/325 tablet 1 tab every 4-6 hrs as needed for severe pain!! 8. HYDROCODONE 7.5 550 1-2 TAB every 4 hrs as needed for pain. 9 2- Celexa 20mg 2x per day 10. 2- piroxicam x2 per day 11 propoxy-n/apap 100-650 tab every 4 hrs need for pain 12 70/30 insulin 30unit morning 20 units dinner 13. Lidocaine top 4%( roxanne)1 ml every two to three hours in rights nostril (headaches are on the left side) for severe cluster headaches 14. 10 liters 02- 20-30 during attacks I wonder if work, my doctors think its odd that i cant eat, I'am a total space case oh but hold on today the dr. said why dont we try sansert for 2 months!!!!!!!!!!!! OH MY GOD DONT LET ME TO FORGET THE ICE PACK !!!! 1 MORE DAY OF MISSED WORK AND I AM FIRED MY GRANDMOTHER DIED ON 5/10 AND THEY TOLD ME TO TAKE A WEEK FOR BEREVMENT. I still have 1-2 HA PER DAY LASTING 10-40 MIN DEPENDS ON THE WHAT THE DEVILS LITTLE GAME IF FOR THE DAY I feel better thanks you for listen to me fuckin RAND AND RAVE BY THE WAY 4 GREAT KIDS 9,12,13,15 ICARRY ALL THE MEDICAL INSURANCE AND IF I LOSE MY JOB THEY LOSE THEIR MOTHER BECAUSE I CANT DO THIS ANYMORE!!!!!!!!!!!!!!!!!!!!!!!! THIS HAS BEEN GOING ON SINCE 3/13/2001 ONE TIME I DID HOWEVER GO 19 DAYS WITHOUT A HA AFTER THE INFUSIONS AND 4 DAYS AFTER THE NERVE BLOCKER I CAN HARDLY TALK BECAUSE OF THE LIDOCAINE WHAT DO YOU GUYS THINK JUST STOP TAKING IT ALL AND SEE WHAT HAPPENS?????? SORRY KELLY |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by Bob_P on May 16th, 2002, 1:21pm Holy Moly! I think you're right, they're trying to kill you. Why do you take all that stuff if it doesn't work? |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by PJS on May 16th, 2002, 2:21pm Kelly, This is disturbing. Sometimes less is more. Speak to your doc about weaning you off some of the meds. Do you keep a journal of the meds, your experiences and the side effects? If you don't and you can convince your doc to wean you off some of the meds, start one, it will be helpful. Any thoughts on whether the HA's are rebounds? I had a brutal series of rebounds coupled with CH's after a session of triptans. I will never go near them again. Also, didn't see Indomethacin listed? I am sure you have been diagnosed with CH's, but since you have quite the med cocktail going on, why not try something new? Just watch out for interactions with the other meds. Wow, good luck. PJS |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by kelly on May 16th, 2002, 2:21pm I haven't been suffering along as you!!!I guess i just do what the DR tells me and hope that maybe 1 more pill will make it go away What would you have me take if you where my Doctor?? I'm not being a smart ass. I guess i just don't know where to turn And i dont know if everyone with CH takes this much medication If was normal or not ? But thanks |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by rick on May 16th, 2002, 3:02pm Kelly- Your regimen of meds sounds obnoxious. For me, more meds has meant more headaches. I really question what these doctors are thinking sometimes. We know only a fraction of what causes our condition, very little has been established as far as what the facts are. Why do they keep guessing on what may help us when they may be hurting us more? Mushroom therapy is working for me so far, although it would take a while for you to produce your own. I question the legality of your job letting you go due to your condition, although I'm not a lawyer, and really couldn't say for sure whether or not they would be in the right. Maybe someone else here can lend more advice, or you could contact a lawyer for more info? Hang in there, I know from experience that heavy meds can make you feel pretty unbalanced, to say the least. The key is not to stop fighting. If ranting helps right now, go for it. -Rick |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by Bob_P on May 16th, 2002, 3:13pm I'd start with an abortive: Oxygen is a must and I'd combine it with Imitrex or one of the other triptans or cafergot. Next is the preventative: I'd start you on a course of prednisone which should stop your hedache immediately and from there try some of the others (you've already tried verapamil and topamax and they didn't work so I'd trash those). I'd also trash the pain killers as they work much too slowley to be effective against CH. When an attack goes from zero to 10 on the pain scale in less than 10 minutes, you need something fast acting like injecable imitrex. Here's a link to good article by Doc Gaodsby on how you should be treating clusters: http://www.clusterheadaches.org/library/general/management_of_ch.htm |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by echo on May 16th, 2002, 3:43pm All I can say is -- I don't know what to say. I could never remember a drug sequence like that. Sounds like they are throwing any and everything at you in an attempt to control that which they do not understand. I've never been with that many to take -- not even close. But when something didn't work after 30 - 60 days I pressed for something different. Hope all goes PF for you. Hang in there. |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by johnrudd on May 16th, 2002, 4:29pm What I'd do is find a different MD TODAY and keep looking until you find one that understands CH and understands what you're going thru. A good MD is worth a hell of a lot more than all of the med's routines you might find here. John |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by Linda T on May 16th, 2002, 6:36pm Dear Kelly: There was a time when I thought I was a walking pharmacuetical co. and I only had 5 prescriptions. Holy mackeral! I agree that if you are finding no relief you need to start weaning/ditching the meds. I know from experience with depakote (1000mg a day) that that alone will make you loopy. I also agree that a course of prednisone to give you a ch "holiday" may be helpful. Of course, I don't know if you can take the pred while taking all of the other meds. My neuro now has me on 80mg Inderal LA daily and that has seemed to help. I believe that sometimes the meds can make your cycle worse. I think it did for me. Especially while on the depakote. Also I took Imitrex 50mg and Amerge 1 mg. That seemed to switch the timing of my attacks. Some will probably disagree with that, but oh well. Print some stuff off this board and get to your doc. If your doc doesn't listen, find a new one. Good luck. Wishing you all PFDAN always, Linda T. |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by Greg_A on May 16th, 2002, 8:15pm Kelly--- too many drugs i think... you could be stuck in between a rebound/CH mix... dont know cuz i'm not a doc.... BUT... i agree with BobP..... are using a non-rebreather mask for the O2? Alot of people say that helps. You didnt say what kind of verap your on... i'm doing 720 mg/day... REGULAR kind.... Prior to that i was taking verap SR @ 720mg, i read Ueli's post about verap, how they get better response using regular verap instead of sustained release (SR). I had my doc switch me to the regular... same 720 dose.... 3 days later BAM!!!! no mo HA... that was April 11. Now after 6yrs of severe chronic HA 4-8avg/day... that one little switch in verap has made all the difference. NO PAIN.... i have had a few minor ones sneek through but i jump on the o2 and they disappear. Good luck to ya.... |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by Ann on May 17th, 2002, 7:55am I agree with everybody here...You are a walking pharmacy!! Holy Cow...no wonder you feel like crap! Talk to you doc about weening some of that....I'm pretty sure it's not helping. About your job, have you filed an FMLA claim? You may want to check into that. (I'm not too sure on the initials...being Canadian and all! LOL...but I think I got that right. Check out the archives, there's info there on filing claims.) Good luck to you! |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by NotH20 on May 17th, 2002, 8:35am GOOD GRIEF CHARLIE BROWN - what a mess of meds you are on! ??? You need to print off as much info from this site as you can and find a new neuro that has some familiarity with ch's. In my opinion, your doc is way over his/her head and doesn't know which pill to give you next. Search the OUCH site for a doc in your area.....if one is not listed close to you - get on the phone and ask the one's that are close if they treat ch's. Your drug list is extensive with many drugs that could be overlaping. The pain pills are probably not doing you any good except to make you more loopy. You are at the right place Kelly - there is a MOUND of info here in order for you to have enough ammo with you at your next appt. I wish you much luck...please keep us posted. Keep your chin up and keep the faith, NotH20 |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by GREGNJ27 on May 18th, 2002, 12:49pm hmmm I wonder how much stock he owns in those drug companys,,,and I wonder how i survive each attack,,i use only hot and cold water,,more hot then cold,,and tylenol,,sinus ,,i stay up till 5 am,,and fall asleep in a upright position,,i generally wake an hour later or so, as the headache starts ,,,i limit its growth,,by getting into the shower,,,,and then with a damp towel,,over my head i press the hell out my skull..trying to push the pain out,,having a towel,,,helps cushion my head,,,during the headache as much as i like being drug free i often feel like i would swallow a syringe of herorin,,if i could get rid of the pain,,,but i know some how i do survive with out taking heavy duty drugs,,,,,,,,good luck,,,, |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by kelly on May 23rd, 2002, 8:39am Thank you all I work with a Dr at Jefferson HA Clinic in phil and a DR in Delaware where i live As far as the imtrex I had a very bad reaction in the hospital with my heart rate. so i have been banned from that. It seems like that works for alot of people. I only wish out of all these drugs. I could take that. Why WHY WHY?? The last week i hav no feeling in my hands and all i want to do is sleep I was at work yesterday and begged them to take me to the hopsital. The HA last for an hour and 10 min. i use o2 suck it in as fast and as long as it takes most of the time i get relieve but it is so far away in another building that by the time i get to it it dosn't work like at home when i can just get right on it. As far as FMLA I USED ALL MY TIME AND WONT BE ABLE TO GO BACK ON UNTIL SOME TIME IN JUNE WHICH SEEM LIKE A LIFE TIME FROM NOW. I have begged, pleaded, cried today is 1st notice for me then 2nd notice and then bye bye i gotta call me dr today and see about getting of some of these meds well again thank you all i cant type any more my hand are numb and hurting I have found so much support of all of you and i thank god for this web site and for all of you i keep you posted THANKS kELLY |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by NotH20 on May 23rd, 2002, 9:04am Kelly, Our thoughts and prayers are still with you - keep the faith and please keep us posted..... Any recent changes in your meds? NotH20 |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by oringkid on May 23rd, 2002, 3:37pm Good Lord! He has got you on 3 opiates! Endocet is Hydrocodone with acetaminifen (sp! tylenol) and the propoxy.. is also an opiate. alprazolam (xanax) celexa and clonazapam are all basically anti anxiety drugs! Depakote and Topomax are both anti convulsives which have been used by some here with good results, although I am not sure about whether anyone has used both at the same time. I assume that the insulin is used for diabetes? But the combos of the anti anxiety drugs and the opiates would certainly make you loopy! I'm surprised you aren't comatose! Please, please go to a new doctor, have him tell you how to ween off of some of these drugs. DO NOT STOP THEM ON YOUR OWN! Very serious side effects could occur. But definitely get a new doc and have him help you get off of most of it. Concerned!! Sherry |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by Villemo on May 24th, 2002, 5:42am I read your text and just sighed. I thought I was in pain, and that I had a lot of pills... I guess I was wrong, but even though. I believe that it is good for a person to see someone who actually has larger problems, somehow my problems doens´t seem to be that big anymore. Emma |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by donnadb on May 25th, 2002, 12:34am i WOULD REVIEW THOSE MEDS AGAIN WITH MY DOCTOR. THREE OF THEM ARE NARCOTIC PAIN MEDS (TWO OF WHICH ARE EXACTLY THE SAME DRUG JUST WITH A DIFFERENT NAME!). HYDROCODONE AND ENDOCET ARE EXACTLY THE SAME ACTIVE INGREDIENTS: TOGETHER, YOU ARE TAKING 17.5 MG. OF HYDROCODONE EVERY 4-6 HOURS!! THAT'S A LOT OF HYDROCODONE AND IT IS VERY ADDICTIVE!! ALSO, THE CLONAZEPAM AND DIAZEPAM DO BASICALLY THE SAME THING. BOTH ARE ANTIANXIETY DRUGS SO YOU COULD PROBABLY DROP ONE OF THOSE UNLESS YOU ARE PRONE TO SEIZURES AND THEN i WOULD DROP THE ALPRAZOLAM BECAUSE SOMETIMES CLONAZEPAM IS MORE EFFECTIVE FOR SEIZURES--ALTHOUGH YOU ARE ALSO ON DEPAKOTE AND TOPAMAX WHICH ALSO TREAT SEIZURES. IN ANY CASE, YOU NEED TO TALK TO YOUR DOCTOR SOON!!! HOPE THIS INFO HELPED! GOOD LUCK! |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by kelly on May 25th, 2002, 7:31am Hi All I called the DR last week in Phil said i should come for a nerve blocker. I ask about getting off some of this meds she said you need an emergency appointment. Also call dr in delaware left a long message he needs to tt to the dr in phil to get me off some of these medications. Haven't heard a word back. You mean to tell me that the dr in phil cant look at my chart and and make changes oh no then they wouldn't get there $180.00 visit bullshit I'm stopping some of this medications please please help me with which once i should get rid of 1st the topamax seem to help the best how i know is i tryed to lower the does before and wham!! so i dont want to mess with that i know that is why my hand hurt so bad and i forget the stupids things someone help me i cant do this anymore Kelly |
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Title: Re: ARE THEY TRYING TO KILL ME !!!!!!!!!!!!! Post by Linda T on May 25th, 2002, 2:37pm Dear Kelly: Sorry you're not having any luck with the docs, but, please be very careful with weaning the meds by yourself. I cannot be of any help whatsover because I have only done that with docs supervision. You are certainly on alot of meds and weaning them without supervision may cause alot of problems, shocking your system and all that. Again, please be careful! Wishing you the best and PFDAN always, Linda T |
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