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Title: Newbie, currently 12-days into episode Post by SamR on Aug 28th, 2007, 11:35pm 33 yr old male. Been having these beasts visit for 9 years, with 2 merciful years off in that time. Just started verapimal today. Use imitrex shots, zomig, oxygen to abort. Prednisone worked right away 2 yrs ago, but it caused CSR in my left eye. Dr's say it's too risky to attempt again. Life sucks that way sometimes. My world has been once again turned upside-down. Wife expected to deliver any day (3rd). Needless to say, I need help finding support. Thanks -Sam |
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Title: Re: Newbie, currently 12-days into episode Post by Barry_T_Coles on Aug 28th, 2007, 11:51pm Hi Sam Welcome, sad you have to be here but you’re in good company. I see you got the tools to help out, I don’t know anything about the meds side of things but others will be along shortly who can help that way. Cheers Barry |
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Title: Re: Newbie, currently 12-days into episode Post by MR_FLOOR on Aug 29th, 2007, 4:20am on 08/28/07 at 23:35:30, SamR wrote:
Look no further Sam support is what you found.Verapimal is my best friend I've been on it for about 13 years.Imitrex is my second best friend don't know what I would do without it.O2 never worked for me in the past,but I'm in the proses of trying it again.Also what has been a god send for me is energy drinks(Red Bull,Monster ect.......)Slam one down at first onset of a Hit drink it as fast as you can you will be surprised how well they work(I was)Important the drink has to have both Caffeine and Taurine in it or it wont work. Well I wont keep you,you have much reading to do,the more you read the more you will learn.There are many informative people on the site that you have to meet. Good luck to you my friend. Dave |
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Title: Re: Newbie, currently 12-days into episode Post by Wayne on Aug 29th, 2007, 6:18am Hey Sam Welcome but sorry you have to be here! I just have to reinforce what Dave said about the energy drinks, the verap will probably take about 2 weeks to kick in properly but you're going to need help getting through that time as well as to handle the odd breakthrough from then. Redbull has been my saving grace, if you do as Dave says, drink one as soon as you feel a hit coming, it should kill it very quickly. It doesn't work for everyone (like every other med we try) but it helps a lot of folks here. Also read, read, read, there's much to learn and knowledge is power. Good luck mate, I hope your life turns right side up really quickly! |
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Title: Re: Newbie, currently 12-days into episode Post by phil_h on Aug 29th, 2007, 6:34am Don't forget water, ice packs and cold showers. Meditation is helpful at times , but with 3 kids might be difficult.... Help your wife ,so she may be your solid supporter ...PAIN FREE WISHES ........ phil h Oh yeh , Congratulations on the coming of number 3 !!!!! |
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Title: Re: Newbie, currently 12-days into episode Post by Linda_Howell on Aug 29th, 2007, 2:19pm Welcome Sam, It looks to me like you have your game plan pretty well-thought out with the Trex, 02 and Verapamil. Besides the energy drinks which really DO help...have you tried Melatonin for the night-time hits? You can buy them in any grocery store in the Vitamin aisle and they usually come in 3mg. tablets. I take between 6 and 9 mg. Melatonin prevents the body from going into REM sleep. THAT is where we usually are when the beast wakes us. For obvious reasons you can't or sholdn't take this indefinetly, but it can't hurt to try this. If support is what you need you have certainly come to the right place. Glad you found us. Linda |
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Title: Re: Newbie, currently 12-days into episode Post by DennisM1045 on Aug 30th, 2007, 1:12pm Linda, I agree with you completely that melatonin helps with night hits. It is helping me quite a bit this cycle. 9mg per night and I haven't had a night hit since I began taking it. I think your characterization of melatonin preventing dreams and REM sleep is incorrect. here is a quote from wikipedia on Melatonin: Quote:
Sam, I also agree with Linda that your arsenal of weapons to fight the beast looks good. Just hold on till the verapamil kicks in. Good luck... -Dennis- |
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Title: Re: Newbie, currently 12-days into episode Post by thomas on Aug 30th, 2007, 3:24pm Dennis is correct, melatonin enhances REM sleep, but by having enough in your system (melatonin) you don't get hit during REM sleep. Benadryl keeps you out of REM, not melatonin. So your sleep with melatonin is good for you, ie the body and mind actually rest and repair, that's why it is my #1 bullet in my beast hunting gun. |
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Title: Re: Newbie, currently 12-days into episode Post by SamR on Aug 31st, 2007, 4:15pm Wow, 7 responses. Thanks everyone. There's no doubt it feels so different to now communicate with people who UNDERSTAND what is happening. How tired did you guys get hearing, "Ohh I get those too, take some ibu", or "Have you gotten your eyes checked for glasses?" The very best is my mother, who swears she gets Clusters everyday but a warm bath does the trick.... Thanks for the advise on melatonin. My 4th day-in I tried it (9mg 1/2 hr before bed) and it worked great for the 1st 2 nights. I was astounded!! The next night I awoke at 12:30 (approx 1 hr after going to seep) w/ a level 10 nightmare. Took me an hr to get that one under control. Based on all of the posts, I'm still taking it, but it has not helped since. No surprise there. Still waiting for the verapimal to kick-in. I really have no expectations but that won't stop me from taking it. I will be buying a 6-pack of those energy drinks tonight. I've now seen enough to believe. As far as meditation goes, I meet with a medi group once in a while. Always been into the buddhist philos of living. If you can meditate during an attack, you are probably the reincarnation of the buddha himself!! - Thanks again for the support. We're a crazy breed... |
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Title: Re: Newbie, currently 12-days into episode Post by Guiseppi on Aug 31st, 2007, 4:31pm On the off chance verapamil doesn't work, my silver bullet was lithium. I'm 47, male, weigh about 190, take 1200 mg a day lithium carbonate when on cycle, stops 80-90% of break thrus with oxygen and the occasional imitrex jabs for the ones that get thru. It's a popular med for CH and many have had success with it. Like verap it takes 10-14 days to build up in your system. Congrats on #3, you've sure got your hands full! Guiseppi |
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Title: Re: Newbie, currently 12-days into episode Post by buhrly on Aug 31st, 2007, 5:47pm hopefully the energy drinks work for you. im kind of partial to rockstar. |
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Title: Re: Newbie, currently 12-days into episode Post by Lotus on Aug 31st, 2007, 8:19pm Hello and welcome :) Interested to see you practising the Buddhist way of life :) I came from a Buddhist family with my mother ( Chinese ) a full practising Buddhist. I agee with you though, its almost impossible to meditate through CH pain, but the philosophy may help more with accepting and coping with CH itself. Painfree wishes and congratulations of the little one. We would love piccies when you can post some. Annette |
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Title: Re: Newbie, currently 12-days into episode Post by chewy on Aug 31st, 2007, 8:43pm on 08/31/07 at 16:15:38, SamR wrote:
If you can do that then you dont have clusters! What verapamil dosage are you taking. 480mg a day is my saving grace. |
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Title: Re: Newbie, currently 12-days into episode Post by Kevin_M on Aug 31st, 2007, 9:45pm I am glad melatonin or caffeine can help for some, hate being different in this respect. Good to hear testimonies and results. |
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Title: Re: Newbie, currently 12-days into episode Post by George_J on Sep 1st, 2007, 1:25am on 08/31/07 at 16:15:38, SamR wrote:
Keep after the melatonin. Using it consistently throughout your cycle may be very helpful, and I'd be surprised if it made things worse. Melatonin is one of the few things that I take. (I've gotten very conservative with the medications and supplements I use to treat CH.) I almost exclusively get hit at night during REM sleep. I look at it this way--melatonin isn't a magic bullet, nor is it a preventive in the same sense that lithium or verapamil is, but (in my experience) it reduces the number of nighttime hits that I get. That means that it reduces the number of hits that I get during a cycle overall. In my particular case, it does so without extending the length of a cycle. That makes it quite valuable, even if it isn't a foolproof weapon. I plan to continue using it when I'm in cycle. Welcome, and good luck. Best wishes, George |
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Title: Re: Newbie, currently 12-days into episode Post by SamR on Sep 2nd, 2007, 1:55am Not sure who to thank, but these tips have made a great difference: - Imitrex portion control - How to make & have ice packs ready - O2, trex, and ice trio assault. I've read so much it's hard to remember where it came from. I was put back on prednisone yesterday. After talking to the eye specialist, the nuero said to go for it again. 2 years ago I developed csr on prednisone, so it's a risk. I think as long as I accept that this is my condition, without getting angry, I will not develop the csr. Stress is no doubt the antagonizer of this beast. Stress & Pred is bad combo. I've not had one since taking the pred. I can't believe how well this works. The script goes for 12 days only, tapering-off slowly. This would not typically cover my whole episode. I'm also still taking the verapimal (180mg per day), but I've never had any blockers do squat for this.. Guess I should just count my blessings for now and hope for no return. Does this sound familiar to anyone? Any advice on preparing for the coming days? Doctors don't have a clue as compared to this board... -Sam |
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Title: Re: Newbie, currently 12-days into episode Post by Jonny on Sep 2nd, 2007, 2:18am Im no doctor, but 180 of Verap wont do shit......you should be at 480 a day........talk to your doc! Also ask him/her about mixing in Lithium carb. Like I said, im no doc.....so read below in this post! |
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Title: Re: Newbie, currently 12-days into episode Post by Kevin_M on Sep 2nd, 2007, 7:05am on 08/28/07 at 23:35:30, SamR wrote:
on 08/30/07 at 13:12:45, DennisM1045 wrote:
And I agree too, just don't take the different triptans within 24 hours of each other. on 09/02/07 at 02:18:11, Jonny wrote:
This I highly agree with most. Your abortives seem good but it looks like an adjustment to the preventive med would be great. You've had to go to the pred. NOW is the time to talk to your doctor about this verap, it is a good time to tell him it has been ineffective so far at this level. Since you've taken it at this low dose for awhile without mentionable side-effects, slowly increasing to a theraputic level may make a BIG difference, otherwise, when the pred is done, you're back to square one. Something should change about that. What reason would you take verap if there was no result from it? It has helped many, but at 180mg a day it can be useless, as it seems it has for you; a weak link in the chain. NOW is the perfect time to address this with doc while on pred. I'm no doc and the tagline on jonny's post says a lot, talk to your doctor. Welcome Sam. :) |
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Title: Re: Newbie, currently 12-days into episode Post by SamR on Sep 3rd, 2007, 1:15pm How do I justify the higher dose of verapimal? These guys hate when you mention the internet... Nevertheless, I just 2x the dose to 360 for now... My CSR returned today, so I must stop the prednisone immediately. This hass become a real mess. Any stress greatly aggravates the CSR. Can't wait to see what a cluster will do to it. In your opinions, how long after stopping pred will these beasts return? What about the shrooms or the seeds? I've read much about it but have no clue where to get this. I did see that one could buy the spores and wait a few weeks, but that does me no good here. Hate soundin like a paranoid pus... I am a different person completely when these episodes hit. Thanks for keeping-up with me! -Sam |
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Title: Re: Newbie, currently 12-days into episode Post by DennisM1045 on Sep 3rd, 2007, 4:30pm Hi Sam, Tell me you didn't up your verap without consulting your Dr! That would be a very bad idea. You have to work with the Dr you have or find another one that you can work with. This stuff is dangerous and you can DIE self medicating! Please don't make that mistake. If I've got that wrong, please forgive my over reaction but this is serious stuff ;) The beast does change who you are for a bit. It comes with the territory. You'll be back to your normal self once he leaves again. Don't let him panic you. It hurts like nothing else but you won't die from CH. I haven't taken a pred taper before so I can't comment on how soon the beast will return. That sucks though. What's a CSR anyway? Take it one day at a time Sam. One hit at a time. Hell, one minute at a time if you have to. Good luck with the head and the coming new born (how many is that for you?). You'll be in my thoughts and prayers. PFDAN to ya... -Dennis- |
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Title: Re: Newbie, currently 12-days into episode Post by Callico on Sep 3rd, 2007, 4:42pm Hi Sam, Print out some of the medical info on here and take it with you to your Dr. If you have a good one, i e one that doesn't have a God complex, he will be glad to have the info. There is no way they can keep up with it all. P;us, CH is so rare that most will never see a case of it. If he does have a God complex and refuse to listen FIRE him and get another Dr that will work with you. I had to go up to 720 mg of Verap before it did anything for me, and then we added Lithium to make it more effective, but I developed side effects from the Lith after a while, and the Verap no longer worked alone. Recently I started using Kudzu following a Pred taper and had grat success with it. Have only had one full blown hit in the last 2 1/2 mos, but that was because I had missed a couple of doses in a row. Check the Meds and Treatments page for info on Kudzu. Red Bull was a real life saver for me until I got on the Kudzu. BTW, Pred did nothing for me other than to make me so dizzy I had to hold the floor to keep from falling off. You are where you need to be for support. When you get it under control you can then do the same for others. Congrats on the baby. Hope it works out well for you and your wife. Jerry |
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Title: Re: Newbie, currently 12-days into episode Post by Kevin_M on Sep 3rd, 2007, 7:21pm on 09/02/07 at 01:55:13, SamR wrote:
I would be unable to verify this information but it has been mentioned concerning CSR. Quote:
http://en.wikipedia.org/wiki/Central_serous_retinopathy Quote:
http://en.wikipedia.org/wiki/Corticosteroid on 09/03/07 at 13:15:36, SamR wrote:
Sam, so far your neuro has prescribed pred while knowing you have developed CSR, while leaving you at 180mg of verap when a tapering up during this time is common. The pred is definitely risky and the outcome has predictably reoccurred. What did he plan on happening anyway when the pred taper was over? Do you have options, like a professional headache clinic or a neuro with CLUSTER experience? Quote:
You shouldn't have to yourself. As to internet info, yes this is an internet based site, however books are available, he should even have one in his office, I picked up a free copy of respectively written "Conquering Headache" right in the office, (mentioning a recommended tapering of verapamil dosage as one preventative), though my first neuro diagnosed, his treatment was insufficient. Quote:
This info might be mentioned by the more experienced with it. This is just my opinion. |
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Title: Re: Newbie, currently 12-days into episode Post by SamR on Sep 13th, 2007, 12:25am I kept on with the verap, stopped the pred. Have only had 2 episodes in the past week. One was pretty intense,, Tonight is the 2nd. Just when you think these damn things are done... I don't know how anyone chronic can tolerate this! Baby was born last wed. Another boy. My 2nd and my wife's 3rd. Thanks for the continued help. What is the suggested kudzu dose that works for you? |
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Title: Re: Newbie, currently 12-days into episode Post by DennisM1045 on Sep 13th, 2007, 6:27am Sorry about the continued HAs. Congratulations on the new arrival! Where are the pics? Love to see pics of little ones. Take care... I've seen several different approaches used. There are loads of threads on Kudzu. Go look through the meds board. Remember, Google is your friend ;;D Google: "Kudzu site:www.clusterheadaches.com" -Dennis- |
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