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Title: Bad news for me! Post by cschick on Jan 19th, 2005, 9:34am :'( Well, the beast has returned with a vengence. I am so angry. >:( I tapered off the verap and now I am getting hit minimum of 5 times a day. Not k10's - they are lower level kips but clusters none the less. Got hit this morning with about a k4 driving in to work. What do I do? I thought I was going to be able to get my body detoxed and now I think I am going to have to go back on the Verap. I don't want to but I don't want to keep getting hit either. OH and I had the o2 picked up. CRAP, CRAP, CRAP!!!!!!!!! Any advice? I've never had a cycle at this time of the year. It always runs from late September through early December. What is going on? Any words of advice would be greatly appreciated all! Karen BTW - Started school last night!! :) That is the one happy bit of news for this post! |
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Title: Re: Bad news for me! Post by Hirvimaki on Jan 19th, 2005, 9:46am Sorry to hear you are getting hit. Hang in there! PF VIBES... I've noticed a lot of people having wierd and unusual cycles over the past few months - myself included. Perhaps the government has turned up the mind-control beams in the last few months. I dunno. Yeah for school! Hirvimaki-Isi |
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Title: Re: Bad news for me! Post by Jeepgun on Jan 19th, 2005, 9:47am Dear Karen, I'm so sorry you're getting hit again. I don't have any advice, but I used to have a cycle every autumn. Last year, they switched to late winter. Living in dread of February... Hang in there. Maybe once your Verapamil builds back up, you'll be able to knock out most of them. Congrats on starting school! :) -Frank |
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Title: Re: Bad news for me! Post by Lizzie2 on Jan 19th, 2005, 9:51am I want to do a study on who's cycles got more messed up with the advent of new medications. For example....many people always had set schedules for a certain period...and then they tried Verap, and their cluster period was 5 months longer, etc. I don't like what I'm hearing about this! Hugz to you!!!!!! Carrie:) |
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Title: Re: Bad news for me! Post by Melissa on Jan 19th, 2005, 9:53am Karen, very sorry to hear your clusters are wreaking havoc. I have never been on verap, but I do have to say that in MY opinion, I think it might be prolonging your cycle. I've seen it happen to others on here. It is one reason why I will never go on it myself. This is just my opinion, and I do not have proof this is the reason why, it's just an observation... sorry :( mel |
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Title: Re: Bad news for me! Post by Jeepgun on Jan 19th, 2005, 9:58am That's why I'm going med-free, for this upcoming cycle. Screw it... I will say that my cycle switched before I went on Verapamil, though. I don't know what made it switch, but I know that the Verapamil/Imitrex combo stretched the cycle out from 8 weeks to 14. I'd rather have a quicker cycle and suffer through it, than to have a mostly pain-free cycle and have it drag on and on. |
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Title: Re: Bad news for me! Post by karma on Jan 19th, 2005, 10:03am Sorry to hear the news Karen, All I can advise is what I would do if it was me. Stick with the 02 and p.m Margi or Chedden about the lithium trick they are using with success. Good Luck |
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Title: Re: Bad news for me! Post by Lizzie2 on Jan 19th, 2005, 10:11am I only use O2 and ice as abortives for cluster. I don't use imitrex..actually I'm not allowed. I have 7 Zomig NS that I am to keep on hand for those "hits" when I'm in a patient's room suctioning a trach, and if I leave, I will be killed...or my patient will die...that sort of thing. If I had episodic clusters and no other conditions, I probably would just stick with O2 and ice for my cycles, but unfortunately mine got more complicated before clusters were even an issue. Yesterday my family doc said "too many chefs in the pot" but yet they won't treat me there because they aren't specialized enough and not even most regular neurologists will take my case. So I continue to be turned into a medical nightmare in the same ole way. haha I want to go back to those days where my medication list consisted of Allegra for allergies and Orthotricyclen. It makes me sad when I look back on my medical form for when I started at Penn State and those are all that is listed for my meds! My lists now don't even fit on the sheet. Ugh! Hugz again!!!! |
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Title: Re: Bad news for me! Post by rickyshot on Jan 19th, 2005, 10:27am I don't know either but this year I have been off schedule with this crap too. I don't know where you live but here in Canada it has been a crazy winter. The pressure literally changes every five minutes. One minute it is ice, the next hour snow up and down. No sunlight hardly at all. I am going nuts. I think the weather may be playing havoc with you too. [smiley=huh.gif] You have my prayers. |
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Title: Re: Bad news for me! Post by nani on Jan 19th, 2005, 11:44am Sorry Karen...the timing couldn't be worse. >:( I've noticed that the beast is wreaking "unusual" havoc with many. I don't know about getting back on the meds...I'm chronic and would have to take verap anyway because of my high BP. Hope you find an answer that works!!! love to you, nani :-* |
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Title: Re: Bad news for me! Post by cschick on Jan 19th, 2005, 11:53am The problem I have with the verap is my blood pressure has never been a problem. My blood pressure is always perfect, so the verap was lowering it and I was getting dizzy "spells" while on it. I don't want to go back on it because it makes me feel horrible. I am going to try to go at it with just the 02, I guess, unless anyone else comes up with some other suggestions. From what I've read it sounds like a lot of people have problems with extended cycles while on it and I don't need that. |
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Title: Re: Bad news for me! Post by sandie99 on Jan 19th, 2005, 12:07pm Karen, [smiley=hug.gif] so sorry to hear that the beast is back! >:( I wish I had some clever advice to give, but I don't. My ch is all-year around thing... Best wishes & PF days, sandie99 |
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Title: Re: Bad news for me! Post by E-Double on Jan 19th, 2005, 12:13pm I'm right with ya! Clueless? Not dissin' ya lol just clueless about meds and the dilemma we are put in ......meds or not.....to be on them or not....... My first cycle on verapamil also my very longest.... Who the hell knows...... Hugs to ya and Kick A$$ in School!!! Excellent!!!!!!! :) Eric |
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Title: Re: Bad news for me! Post by taraann on Jan 19th, 2005, 12:45pm So sorry for all of you getting hit for so long! Lotsa vibes that it will ends SOON! Hugz, Tara Ann |
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Title: Re: Bad news for me! Post by broomhilda on Jan 19th, 2005, 12:46pm :'( Karen, sorry the beast is playing tricks on you... Ditto to what everyone has said, I think verap changes your cycle and possibly extends it, I tried to taper two times during my cycle which lasted ten months... :-/ Thinking of you and good wishes on over... Andrea |
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Title: Re: Bad news for me! Post by Charlie on Jan 19th, 2005, 1:23pm Rats. Sorry to hear this revoltin' development. Now and then I got a week preview of the beast in July or August. It always seemed to happen when I was traveling to antique shows with a friend. Beats me. Got my regular cycles in fall and spring of course. Inderal would knock 'em down quite a bit after a week or ten days it seemed. I took it as an abortive. Maybe you haven't tried it? Charlie |
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Title: Re: Bad news for me! Post by Lizzie2 on Jan 19th, 2005, 2:49pm on 01/19/05 at 12:46:23, broomhilda wrote:
Did it end finally???? Damn we have been out of touch... >:( Miss you!!! :-* |
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Title: Re: Bad news for me! Post by PrettyH8Machine on Jan 19th, 2005, 3:02pm One thing the beast can be is unpredictable. Just when you think you have him figured out, he throws yet another curveball. Hope this doesn't last long, but I'd definitely get back on the Verapamil. Hugs, CD |
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Title: Re: Bad news for me! Post by KingOfPain on Jan 19th, 2005, 3:38pm on 01/19/05 at 15:02:36, PrettyH8Machine wrote:
"The only constant to CH is the inconsistency." KingOfPain 01-19-2005 :( Sorry Karen. Pain free's to you. |
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Title: Re: Bad news for me! Post by broomhilda on Jan 19th, 2005, 3:59pm on 01/19/05 at 14:49:52, Lizzie2 wrote:
Yes finally... we have been out of touch and hey miss you too!!! :-* (((((((Carrie)))))))) |
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Title: Re: Bad news for me! Post by Woobie on Jan 19th, 2005, 5:05pm Damn Karen I'm sorry :-[ Ramon never lets them take the O2 away. He keeps it year round.... just in case. We're lucky, tho - in that our insurance pays 100% of it... so we can do that. You can DO it......... dont let the beast mess with you getting an edumatacion. ;;D Smooooch! :-* tina |
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Title: Re: Bad news for me! Post by cschick on Jan 19th, 2005, 5:14pm Thanks guys! I appreciate all the advice. I guess I am going to get the 02 back. It costs me $50/month but it is worth it. I am considering just buying a small tank to get me through. I didn't use much of the huge tank - only about 1/4 of it. I will have to check into it - you know, between working 45-50 hours a week, going to school 4 nights a week, studying and taking care of Colin. :-/ bleech. I'm feeling a bit overwhelmed. I will adjust though, I always do!!! ;;D Karen |
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Title: Re: Bad news for me! Post by Tiannia on Jan 19th, 2005, 5:40pm I am sorry hun. Hang in there. Talk to your doc see if there is someother cocktail that you can get on. -Tia |
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Title: Re: Bad news for me! Post by LeLimey on Jan 19th, 2005, 7:03pm Aww Karen [smiley=hug.gif] I hope you feel better soon. Rotten fooking beast messin' with my mate >:( |
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Title: Re: Bad news for me! Post by Bethany1 on Jan 19th, 2005, 7:23pm Karen, so sorry your gettin hit again. Right when school begins.. isn't that always the way. hang in there bud, hope things get better for ya. [smiley=hug.gif] Beth |
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Title: Re: Bad news for me! Post by lionsound on Jan 19th, 2005, 11:21pm Karen, Just one tiny bit of advice to add to what's above...go and get some of those disposable ice packs to keep handy with you during your adventures. bummer about the beast and CONGRATS! :) on starting school! Good for you!!! GO Supermom! Be well and PF -lionsound |
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