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Title: Depakote, Ergotimine & Support Post by PJS on May 10th, 2002, 9:18am Good morning everyone. Posting is new for me, but I have been an avid observer for a few years now. A little history. I am a 31 yo male who was diagnosed with CH's 17 years ago. The first 8 years I was Chronic, two HA's/day and you could set your watch by them (K6-7). These were easily treated with O2 and therfore not too difficult to manage. For the last 9 years the CH's have been episodic with increasing pain free days, weeks, months and years. This has been a blessing in disguise. While chronic, O2 saved me. Now that they are episodic, O2 is not as effective. 2 weeks ago the monster returned after 24 months. The first week was manageble with O2 (K6-7), then a week ago, out of nowhere I was nailed with three K10's. These lasted about 5 1/2 hours (odd, I know) and I ended up in emerg. They filled me up with Toradol, Gravol, Prednisone and hours of O2. After that I began a weaning regimen of Pred while I waited to see my neuro. Saw him and he started me on Valproate (Depakote?) on a ramp up schedule to 1000mg/day, while continuing to wean me off the Pred. Well as anticipated, upon finishing the Pred, the CH's have returned. All of them are at night, and for the most part a treatable with O2. Problem is, they are non stop. I beat back the CH with O2, fall asleep for 20 min and am up again with another CH. I am also getting a lot of pain in my neck and on the side of my head, not just behind the eye and in the sinus area. My doc mentioned that part of a CH involves the Carotid, so I have taken it upon myself to spend the 15-20 minutes I am on O2, icing my neck, the area around my carotid and my head (anyone tried this?). I have to find humor in this because I feel like I am chasing the pain around with the ice. Everytime I locate the painful area and apply ice, another spot flares up (forgive my bizarre humor, I need to find something to get me through this). Anyway, last night I was nailed again with a K8-9, O2 didn't work and nor did ice. I have hit the wall of fun. No sleep, no relief. Spoke with my nero again today and he is upping the Valproate to 1500mg/day and asking me to take an ergotimine tablet 1/2 hour before bed. So my question. What should I expect? I am terrified to take meidcines and upping the Valproate and taking a new med (ergotomine) is very scary for me. I need some support! Thanks for listening, PJS |
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Title: Re: Depakote, Ergotimine & Support Post by Bob_P on May 10th, 2002, 10:18am Ergotamine is ok. They say to take 2 tablets at the onset of a HA and another tablet every 1/2 hour until the HA stops (up to 6 tablets per HA but not more than 10 tablets per week). The 10 per week is the kicker for me. I usually wind up taking 20-25 tablets per week with no side effects other than cold fingers and toes from reduced circulation. Last cluster I found a tab of cafergot before bed got me through the night pretty well. If it doesn't help you can also look at Amerge. It has the longest half-life of any of the triptans so it may help ward off the nightly attack (don't take triptans within 24 hours of taking ergotamine though). I've used cafergot for my attacks for 25 years with no problems. |
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Title: Re: Depakote, Ergotimine & Support Post by PJS on May 10th, 2002, 10:43am Thank you very much for the reply! I thought I was alone for a moment. Any other helpful suggestions from anyone are appreciated. Thanks again! PJS |
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Title: Re: Depakote, Ergotimine & Support Post by kim on May 10th, 2002, 11:04am Hey PJS, I also get severe pain in neck. My neuro told me to apply HEAT to the neck area of pain and ICE to the head/face areas of pain. I have had some sucess with this. Hope the meds get kicking soon for you. Kim |
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Title: Re: Depakote, Ergotimine & Support Post by PJS on May 10th, 2002, 11:16am Thank you Kim, I will give it a try tonight. |
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Title: Re: Depakote, Ergotimine & Support Post by Linda T on May 10th, 2002, 1:13pm Hi PJS: I was on depakote for 7 weeks. I started at 500mg for about 5 weeks and 1000mg for 2 weeks. I'm sorry to say that it didn't work for me. In fact, I think it may have made the attacks worse for me. I went from 2-3 CH a day to up to 8 a day. They would start at about a 6 and work their way up to 10 on the kip. Finally I called my neuro and told him to wean me off, which he did. I also took amerge, as BobP suggested. I actually took 50mg imitrex and 1mg amerge at bedtime (when the first attack would hit). It worked pretty well and and I managed to get in a decent nite's sleep. I also talked to the neuro about the neck pain because I usually feel a pretty bad "swelling" in my neck around where you would feel your heartbeat. He also said it had something to do with the carotid. I never found ice to work tho. I would take a hot shower and stand in there for as long as it would take for the imitrex/amerge to kick in. After I stopped the depakote the neuro put me on inderal (60mg). After about 1 week my attacks were down to 1 maybe 2 per day only hitting about 4 (tops) on the kip scale. I don't really know if it's the inderal of my cycle is ending (this cycle is going on 6 months so its about time!). Wishing you luck and PFDAN always, Linda T. |
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Title: Re: Depakote, Ergotimine & Support Post by PJS on May 10th, 2002, 2:09pm Hi LindaT, Thanks for the info. I too am on Inderal and have been for 6 years, which I do believe has significantly reduced the frequency of the attacks. The Depakote seems to be increasing the frequency but improving the response to O2. My neuro is increasing the Depakote this weekend and if the cycle is not broken by Monday he is taking me off and moving on to Verapamil (despite the contraindication with Inderal). As mentioned, I am also taking my first Ergot. tablet tonight, I am nervous but I need sleep!!! Hope you have beaten this thing for a while. PJS |
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Title: Re: Depakote, Ergotimine & Support Post by PJS on May 13th, 2002, 9:40am An update for those interested. I am now up to 1500mg of Depakote (Valproate) per day and all it seems to do is make the HA's worse (more frequent). However....I took my first Ergotamine tablet Saturday night once the CH began and within 25 minutes was HA free. Not only that, I slept all night and did not have another HA until 11pm Sunday! More than 24 hours without a HA is amazing!!!! I took another Egot. tablet last night once he CH started and slept again and continue to be HA free as of 10:30 this AM. My neuro said if the Depakote was not working by today he would switch me to Verapamil, however there is a little concern since I am already on 40mg Inderal daily. I will be monitored closely, I am sure. I will keep you posted on my progress! Wishing everyone best of luck in beating these down. Sincerley, PJS PS Should I be concerned that the Ergotamine will stop working in the near future? |
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Title: Re: Depakote, Ergotimine & Support Post by PJS on May 13th, 2002, 11:03am Update on the update an hour ago. I made it very clear to my neuro that I felt the 1500 mg of Depakote was making the HA's worse. More Depakote = more HA''s. Well, his solution......I am sure you guessed it, up the Depakote to 2000 mg daily. Okay then. More = worse.... so lets give him...hmmm....MORE. I will keep you posted! PJS |
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Title: Re: Depakote, Ergotimine & Support Post by PJS on May 16th, 2002, 11:53am I think I am having a discussion with myself, but for those watching the thread, here goes. I am now at 2000mg Depakote per day and my head is spinning. Dizziness seems to be the major side effect for me. I have been taking the Gravergol (Ergotamine) at bedtime and am actually getting some sleep! Interestingly, I have been on Inderal for for quite a few years now and they did at one time break the cycle and keep it away ( 2 year intervals) however, they seem to be causing a HA now. I did a little experiment and took the Inderal at three different times 6p, 7p & 8p. Each time I got a CH 45 minutes later...? Hmmm....any thoughts or similar experiences. PJS |
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Title: Re: Depakote, Ergotimine & Support Post by rick on May 16th, 2002, 12:58pm PJS- Wow, I really feel for you. I was on only 500mg of Depakote daily, and I won't be trying the stuff again. This was in addition to 50mg of Doxepin daily, plus a tapering dosage of prednisone. Like yourself and Linda T, I experienced headaches that increased in intensity and frequency as the Predinsone dosage began to lower. Not to mention how horribly sick and depressed I felt from all the side effects of these drugs. I am not a doctor, but if I were in your shoes, I would tell my neuro that it was time to move in a different direction. Good luck. -Rick |
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Title: Re: Depakote, Ergotimine & Support Post by Linda T on May 16th, 2002, 6:50pm Dear PJS: We must have the same neuro. I complained to him that the depakote was just making things worse and he just wanted to increase the dosage. Maybe alittle reverse psychology would work (like I do with my 4 year old) Say you tell your neuro you love this stuff - he'll probably wean you off ;D Seriously, it got to the point where I told the doc I just wasn't going to take it anymore - give me a taper schedule or I'll just stop. As for the inderal and the timing of the attacks: Relaxation is a trigger for me. 45 min to 1 hour after I finally put my feet up to watch tv or read - BAM. Could be 9p or 10p or 11p. All depends on how busy I am on a particular evening. So maybe - it's not the time you take the inderal its just your given circumstances. Does this make any sense? I'm happy you have been getting sleep. Sleep deprivation is one of the worse side effects of ch, in my opinion. But fear, depression, anxiety, etc., etc., right up there :o Wishing you PFDAN always, Linda T. |
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Title: Re: Depakote, Ergotimine & Support Post by PJS on Jun 7th, 2002, 5:10pm Hi everyone, I am sure this is now a long forgotten thread but I thought it would be worhtwhile updating you. I finally won the battle with my neuro to wean me off Depakote with a plan to try Verap. Since I was on Inderal, he suggested I give it up as well, given the contra-indication. Well, weaning me off Depakote reduced the headaches as anticipated and interestingly, giving up the Inderal also reduced the frequency. My neuro got busy and did not get around to prescibing the Verap (blessing in disguise). So, I have been drug free for 2 weeks now and completely HA free for 4 days! Some mild shawdows, but no HA's. I just want to remind everyone to pay attention to your own insticts. My body was telling me to get off the meds and it worked. Whether it was just a coincidence that the cycle is winding down, or it was in fact too much medicine, it is a relief to finally get some sleep and feel like I can be almost normal again. Wishing you all PFDAN, PJS |
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Title: Re: Depakote, Ergotimine & Support Post by Bob P on Jun 7th, 2002, 5:46pm Thanks PJS. A lot of people don't take the cafergot because they think the caffeine will keep them awake. I've always slept like a baby after taking it (of course that usually includes a fight with the demon so I'm pretty tired anyway). They make a suppository ergotamine which is more effective and faster than the tablets. May look for it next time. Congrats on being painfree! |
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Title: Re: Depakote, Ergotimine & Support Post by Linda T on Jun 8th, 2002, 9:42pm Dear PJS: Glad you're pf and off the depakote. I hated that stuff. Wishing you a very very loooooong remission. Good luck. Linda T |
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Title: Re: Depakote, Ergotimine & Support Post by NotH20 on Jun 10th, 2002, 2:16pm PJS - I guess I missed your original post - sorry so late! Depakote did NOTHING for me except make me gain weight and caused me to be extremely dizzy. I totally agree with you statement that we all need to listen to our bodies. Sometimes we have so much medication in our system it's difficult to see the forest for the trees....... I've too have been not only pain free but med free since April 18th and my body feels so much better. Congrats to you- keep up the good work. NotH20 |
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Title: Re: Depakote, Ergotimine & Support Post by nancyc on Jun 10th, 2002, 4:21pm I totally agree noth20....i would be afraid to listen to my body rite now i am so drugged with antiseizures...heck, i even forgot there were forest in the trees lol.. |
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Title: Re: Depakote, Ergotimine & Support Post by NotH20 on Jun 10th, 2002, 4:45pm Nancy - meds still got you all messed up ??? Sorry you are not feeling well - you keep the faith and keep on smiling..... Mia |
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Title: Re: Depakote, Ergotimine & Support Post by chalo on Jun 11th, 2002, 3:35pm i have just been diagnosed with CH.My doctor started me on prednisone for just 5 days and has switched me to divalproex.My question is,does the medicine take effect immediately or does it require a build up time?also,is it common to feel intense pain in my jaw?it is the same side(left)as is the rest of the hell.any answer would be appreciated,I'm sure i'll have many more questions thanks chad ??? :'( |
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Title: Re: Depakote, Ergotimine & Support Post by NotH20 on Jun 11th, 2002, 3:48pm Hello Chad - welcome to this great site. I'm sorry that you have to be here, but you couldn't find a great group of people. As for me - the prednisone works within 24 hours ;D I believe that a 5-day round of prednisone is not enough to break the cycle, but that's just me and my mean old beast. >:( It usually takes at least 10 days to break, but again I feel results within the first 24 hours. I don't have jaw pain as you mention, so I can't help you with that. |
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Title: Re: Depakote, Ergotimine & Support Post by texan on Jun 11th, 2002, 7:25pm Hi Chad I also get pain in my Jaw but only notice it as my attacks are ending . As i come down i am able to assess what is going on, in the right side of my head . About Ergotamine . I am getting great results with this ,but have to have 1 day a week of it . I always get nailed on this day and it is a struggle to do this . I am seeing my doc later in the week but does any one know why i have to do this ? PFDAN to all Texans |
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Title: Re: Depakote, Ergotimine & Support Post by simpson1974 on Jun 11th, 2002, 7:58pm Hi Chad, Sorry you were diagnosed with CH. As another person mentioned, though, this is an invaluable resource for anyone with CH. Prednisone worked great for me the first time I took it, but not so well the second time and the third time (which happens to be right now.) They have eased the headaches, though. It worked immediately the first time and gave the verapamil I was put on enough time to start working. However, I was on it more than 5 days... I think I was on it for 10... no more than 2 weeks, I'm sure. I don't have any jaw pains, but this time around, I've had a real trouble sleeping, as many others who have taken prednisone will also tell you they have experienced. Crazy dreams, too... and what little sleep I had was very restless. Good luck with your battle. There is a lot of support and advice to be had on this site! |
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Title: Re: Depakote, Ergotimine & Support Post by Linda T on Jun 11th, 2002, 8:14pm Hi Chad. I was on a 12 day course of pred and the first time it worked the first day. I took 60mg that first day. The second 12 day course didn't work so fast. It started working around day 4. Although I also started taking Inderal LA then so it could have been the Inderal kicking in. One never knows. Good luck and PFDAN always, Linda T. |
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Title: Re: Depakote, Ergotimine & Support Post by chalo on Jun 11th, 2002, 9:00pm hello everyone! thank you all so much for such prompt and helpful replies!Iguess as i have read on so many of the postings,i should just work with the Dr to find my best program.i'm so happy and releived to have found such a compassionate support system.you guys(girls)are great.not surprisingly,no one in my world can wrap their head around it.I have plenty more questions,but i feel i can get some sleep now.i'm sure you'll hear from me tommorrow!Again,thank you! :) :) PFDAN to all chad |
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Title: Re: Depakote, Ergotimine & Support Post by PJS on Jun 12th, 2002, 7:51am Hi Chad, Sorry to find you here! Take comfort in knowing that you are surrounded by compassionate people who understand you. There is nothing better than an emotional security blanket when you are at your most vulnerable. I have to admit Divalproex (Depakote) may have had some benefits. It took about 7-10 days to start working and when weaned off, lasted for about the same time. Once weaned off, I was HA free for 4 days but the CH's are starting to creep back. I will be put on verapamil in the next day or two. I hope this works! Enough about me. Chad, keep your head up high. Challenge the beast and make him bow to you. You can conquer this. It is a matter of understanding its' intricacies, fighting it on multiple planes (pharmacological, mental and emotional) and working with your neuro, your body, your family and friends and of course "us" at clusterheadaches.com. This is not going to be easy and some of your experiences will be downright atrocious, but once you find your balance, they will become manageable to some extent. I wish you Pain Free Days And Nights and will keep an eye on this thread for updates. Kind personal regards, PJS |
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Title: Re: Depakote, Ergotimine & Support Post by chalo on Jun 15th, 2002, 9:29am just an update.After 5 days,the divalproex seems to have reduced the intensity of HA's.however, frequency and duration are still wacky. chad ??? |
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Title: Re: Depakote, Ergotimine & Support Post by barbee on Jun 15th, 2002, 10:40pm URL[ftp][/ftp] Be very careful with ergotamine, which is the main ingredient in cafergot. I took it the first 3 years of CH, and developed Reynaud's disease, which causes decreased circulation, which only gets worse, and can lead to gangrene. Good luck, and pfdan |
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