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Title: I'm so scared Post by ChrisUhl on Mar 9th, 2004, 5:28am Hi guys Well, this might be the wrong place to start this topic. But I need to let some steem off. And I'm new to this site, so I hope you'll all forgive me if this is the wrong place to post this message. I've had CH for the past 3 years. The cycles come on a pretty regular basis - every 3rd month with one attack at night for 3 weeks. Attacks are usually a 7 on the KIP scale. So far so good - this I can deal with. Two weeks ago my last cycle seemed to have ended. But then 4 days ago a sudden attack hit me on a KIP scale 9. Then for the last 3 days I've had constant shadows and 4-5 attacks per day. I just finished one scary son of .... 20 minutes ago. And I'm exhausted. I'm so terribly freightened. What if my CH is changing towards a chronic stage? How on Earth can anyone deal with having the beast luring and attacking daily? I'm this close to burst into tears. And though I know I'm probably over-reacting - I just can't help it. I feel like I'm going to explode. Thanks guys. I love having this forum to easy the mental pain of having the beast as a pet. |
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Title: Re: I'm so scared Post by pubgirl on Mar 9th, 2004, 5:56am Hi Chris Don't panic. Episodics often have weird things happen to their cycles. It doesn't necessarily mean you are going chronic. What you describe happened to me, thought the cycle was ending, then Whallop! hit a massive peak, then it died down again. What are you taking for abortive and/or preventives? If you are getting hit that many times 02 would look like the obvious option as otherwise you run the risk of taking too many triptans. The increase in severity of your cycle would also probably suggest that if you aren't considering or taking preventives, perhaps it's worth talking to your neuro or doctor about e.g. Verapimil , or even a short prednisolone course to break this cycle and give you some relief. Keep posting and don't let it get you down. Wendy |
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Title: Re: I'm so scared Post by ChrisUhl on Mar 9th, 2004, 6:05am Thanks for the cheering words Wendy. I'm really glad to hear that others have tried these irregularities as well. Helps a little when the frustration kicks in. I use Imitrex and oxygen as abortives. And when things get really rough I usually throw in some Apozepram (don't know what it's called in the US. But it's some sort of sedative). This combo will normally relieve the pain after 15-30 minutes. I used to take Lithium. But the thing gave me a depression (which I just finished fighting off half a year ago). So at the time being I'm off preventives. Next week however, I'm going to see the neuro. And I'll really try to talk him into giving me some Verapamil. Or whatever drug that might work. Wauv, it's really great to have someone to talk to about this. Amazing how words can actually easy the pain - well at least the mental pain. Thanks Chris |
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Title: Re: I'm so scared Post by pubgirl on Mar 9th, 2004, 6:10am Chris Verapimil is certainly the preventive of choice. The only thing you need to be aware of is that it takes a while to kick in and get the dosage right for you (may take weeks) so if the cycle is really unmanageable, doctors sometimes combine it with a short prednisolone course to break the cycle while waiting for the Verap to kick in. Pred is a corticosteroid so it must be short term use, and tapered off, not stopped suddenly. Also when using Verapimil, an ECG then regular ECG monitoring is done, especially if the dosage is increased. Hang in there Chris, it will end! W |
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Title: Re: I'm so scared Post by Opus on Mar 9th, 2004, 7:40am Chris, Don't be scared, you will need to be in cycle for a year with not more than 13 Pain Free days in a row that are not caused by meds. I am loking at a 11 1/2 month cycle with exactly 13 PF days in a row. Opus/Paul |
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Title: Re: I'm so scared Post by Prense on Mar 9th, 2004, 8:57am on 03/09/04 at 07:40:34, Opus wrote:
I believe they changed it to 30 days. Just spliting hairs here, don't mind me. ;;D Hang in there Chris! |
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Title: Re: I'm so scared Post by JDH on Mar 9th, 2004, 9:08am on 03/09/04 at 08:57:52, Prense wrote:
30 days? How can that be? LOL, hell my cycles run longer than 30 days. Hang in there Chris. We've all been there and as bad as this is, it won't kill you AND it's gonna end. Remember, you've got a lot of people here that you can lean. pfdan's to you, Jim |
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Title: Re: I'm so scared Post by Robert the....... on Mar 9th, 2004, 9:08am Chris, You and I are in the same boat!! although you have suffered longer than me! What Pubgirl is saying are the wise words pretty much she told me about two days ago on the UK board. after me having a full scale rant about the unexpected change in pattern. I've been in the same bout with mini breaks for what seems like forever. You take the good days as good days and the bad days as rough days (and kick the sh!t out of beast when you get a chance) if thats on the boards then keep posting and as the UK sufferers keep telling me stay strong it's gona be over soon!!! Scott |
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Title: Re: I'm so scared Post by Prense on Mar 9th, 2004, 9:14am on 03/09/04 at 09:08:20, JDH wrote:
30 days PF w/in a 12 month period... |
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Title: Re: I'm so scared Post by JDH on Mar 9th, 2004, 9:53am on 03/09/04 at 09:14:18, Prense wrote:
OK, duh me... it's early and I haven't had enough coffee yet ;) Jim |
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Title: Re: I'm so scared Post by Tiannia on Mar 9th, 2004, 1:06pm WooHoo, I've only been dealing with this since 8 months with a total of 13 days.... Chris, It is ok. And even if you changed to chronic. You would survive. Clusterheads are strong and we can do anything. You will be ok. PF Wishes to you, Tia |
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Title: Re: I'm so scared Post by fubar on Mar 9th, 2004, 1:23pm Chronic or not, it can't kill you. You'd be surprised what you can handle once you are forced to do so. I know that 3 years of chronic was enough to make me think about killing myself, but I always knew it *would* end at some point. It did. Life is good. Don't worry. Be happy. Those words, as silly as they are, are important to remember. Anxiety over the 'next bout' caused me more damage than the headaches did. Try to accept it. Fight it anyway you can, but accept that you must deal with it. -Fu |
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Title: Re: I'm so scared Post by t_h_b on Mar 9th, 2004, 6:23pm on 03/09/04 at 05:28:51, ChrisUhl wrote:
I hope you're not becoming chronic but if you do become chronic you can deal with it--you've had practice as an episodic ClusterHead. You can deal with anything. |
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Title: Re: I'm so scared Post by BlueMeanie on Mar 9th, 2004, 7:01pm Chris, I'm episodic and when in cycle I rarely ever get less than 2 CH's a day EVERYDAY until the cycle ends. Usually more towards 3-6 Ch's a day. Chronics are close to the same as episodics, but don't get relief. Don't worry too much. You are probably just still in your cycle. My cycles last anywhere from 8-18 weeks a year. |
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Title: Re: I'm so scared Post by bobkip on Mar 9th, 2004, 9:51pm Hi Chris, Not to worry. BTDT. I'm a prime example of survival; been dealing with the beast for about 56 years. Did the chronic thing (that sucked) 15 or so years ago and now episodic. I went for 2 1/2 years pain free 'til last January and, WHAM.... This cycle is the worst I can remember, 6 to 8 hits a day and guarnteed while I'm sleeping, usually within an hour of falling asleep and going on all night long. But it WILL end. Kip |
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Title: Re: I'm so scared Post by Charlie on Mar 9th, 2004, 11:09pm Fubar is right. It won't kill you. At times I wanted to kill those around me. Fortunately mine were episodic too. You never know about the beast. For me, it will be 13 pain free years in April. You just never know. Good luck and know that we're here for you. Charlie |
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