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Topic: Strange summer cycle (Read 388 times) |
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seasonalboomer
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Strange summer cycle
« on: Aug 21st, 2006, 11:44am » |
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This cycle started just as the last several had. We experienced a severe heatwave in late July/Early August. I had been training to run a marathon in mid-September. I did one run after work and experienced some ocular sensitivty from the mottled light through the trees, was completely overheated and my perspiration actually felt like it made my face itch (assuming trigeminal nerve distress makes all nerves in face and eyes heightened.) Once I got home I felt a shadow that felt like CH coming on. Hit the O2 and it was gone.
I tried to focus my running in the mornings when it was cooler and felt hits come on probably 70% of runs. Total hits through August 20 total up to about 8 so far with the worst so far coming yesterday (Aug 19) after a very muggy morning run. I couldn’t hit it with O2 after 3 tries so as it ramped up to about a Kip 6 and I hit it with a little Imitrex and it was gone in less than 5 minutes.
The previous Saturday I had the same kind of experience but tried to stay off the Imitrex and lost a good part of the morning with a very uncomfortqable shadow and then finally just went to sleep after it lifted and felt rung out.
Strange thing is that I have not had a hit triggered by alcohol yet this cycle and have drank beer, red wine, etc.. throughout the cycle.
Another strange thing, I had to go to the hospital on Sat. morning because I hit a yellowjacket nest with the weed whipper. (little bastards) The prescription I got was for 4 days of prednisone. No hits since Saturday, even with being overheated and running. Hmmmm. And I always said I wouldn’t do the steroidal meds for CH.......
Other things to note:
-ocular sensitivity
-feeling of that burning overheated, skin just hot in the heatwave seems to have been a turning point.
-perspiration sensitivity.
Scott
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Margi
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Re: Strange summer cycle
« Reply #1 on: Aug 21st, 2006, 12:19pm » |
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sorry to hear this, Scott. Hopefully the anomolies you mention mean that it won't be a brutal cycle for you.
Pred for wasp stings? Never heard of that before. I'm allergic as well, but they've only ever given me benadryl and/or an epi pen. I think your record's still clean though - you're not doing it for CH, you're doing it for wasp stings. And 4 days isn't a long taper for pred anyway.
Occular sensitivity from mottled light....did you get any vision loss as a result? That's happened to Mike a couple times in past cycles. Makes me think that maybe migraine is trying to creep in on you as well as cluster. 
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kathy copelin, ch.com 8/8/06
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Bond007
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Re: Strange summer cycle
« Reply #2 on: Aug 21st, 2006, 12:44pm » |
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Scott-
That "mottled light" thingy from trees/leaves or whatever whether I'm running or driving typically triggers migraines for me. And, yes, it is that ocular sensitivity reaction. So far, I haven't noticed it ever triggering a CH attack for me though.
I certainly hope this doesn't mean that you're in for a doozie of a cycle! Here's hoping it's just different and shorter!!  Best of luck, bro.
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Sometimes life bites you in the ass -- that's what drugs are for!!
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seasonalboomer
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Re: Strange summer cycle
« Reply #3 on: Aug 21st, 2006, 1:05pm » |
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on Aug 21st, 2006, 12:19pm, Margi wrote:sorry to hear this, Scott. Hopefully the anomolies you mention mean that it won't be a brutal cycle for you.
Pred for wasp stings? Never heard of that before. I'm allergic as well, but they've only ever given me benadryl and/or an epi pen. I think your record's still clean though - you're not doing it for CH, you're doing it for wasp stings. And 4 days isn't a long taper for pred anyway.
Occular sensitivity from mottled light....did you get any vision loss as a result? That's happened to Mike a couple times in past cycles. Makes me think that maybe migraine is trying to creep in on you as well as cluster. |
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Margi,
Since I had sat for over an hour and a half in emergency to get in the doc pretty much presumed we weren't needing to worry about anaphelaptic(sp) shock, so I asked he really needed to hang an IV and put me into la-la land with the Benadryl. I'm so close to the hospital that I usually save my EPI-PEN for when I'm away from home. So I think the pred is for the swelling and itchiness. And I forgot to mention that the last two times they've used Pepcid and this time prescribed Zantac 150's, for it's H2 Receptor Antagonist quality (whatever that is) (see these are the times when we miss Jonathan.....)
I've noticed the ocular sensitivity for the past several years and have only recently been making a close study of it. It is sometimes accompanied by that green tennis ball thingy like when you look into bright light.
As I've said before, since I found O2 my cluster experiences sound so "lightweight" compared to what many others suffer. So I won't go on too much about it. The only thing I see as a clear issue is that there was a certain point this summer when I ran that my thermo-regulatory seemed to be working just fine, and then a few weeks, the flushing, the intense overheated feeling. And where is that thermoreg system operating out of... yup, my hypothalamajingy.
On the blink again I guess, like a frayed wire.
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| « Last Edit: Aug 21st, 2006, 1:09pm by seasonalboomer » |
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Margi
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Re: Strange summer cycle
« Reply #4 on: Aug 21st, 2006, 1:14pm » |
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Scott, you're allowed to "go on too much about it"...that's how we learn from each other.
Green tennis ball thingy? um, what?
Yep, the benadryl they give you in emerg is some pretty good stuff isn't it. It will knock me on my butt everytime, but the stuff I buy over the counter, at least it gives me to time get my jammies on. What does pred do for stings though? Just keep the swelling down? Sorry, just re-read your post. Missed that part the first time. DON'T scratch though! You know that as well as I do - put ice on it if it gets itchy.
Reading your post made me so angry. Here we sit, being able to RECOGNIZE when a cycle is trying to launch....i.e...seeing your normally normal thermostat suddenly goes out of whack, all of a sudden "triggers" trigger again when they usually don't.....and yet we are still powerless to stop that freight train coming at us. It SHOULD be (and hopefully someday WILL be) that this is the time when we shoot that magic bullet at cluster and stop it in its tracks. *sigh* 
FYI, this year, when Mike's cycle looms, we're going to throw the seeds at it. Right at the stage you're at now. You had mentioned that you were going to pursue alternative routes next cycle as well.... still the plan?
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| « Last Edit: Aug 21st, 2006, 1:17pm by Margi » |
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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seasonalboomer
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Re: Strange summer cycle
« Reply #5 on: Aug 21st, 2006, 1:27pm » |
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on Aug 21st, 2006, 1:14pm, Margi wrote:| FYI, this year, when Mike's cycle looms, we're going to throw the seeds at it. Right at the stage you're at now. You had mentioned that you were going to pursue alternative routes next cycle as well.... still the plan? |
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I was.... and then I tried to pop open some seeds and my batch doesn't look quite as "fresh" as it was promised to be.... and then, worse I wimped out and took an imitrex, and then the pred. Geez, so much for appropriate detox. At this rate the cycle will be over before I can dose.
scott
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Sandy_C
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Re: Strange summer cycle
« Reply #6 on: Aug 21st, 2006, 1:30pm » |
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Sorry about your "itchies" Scott. Owe  
As for ocular sensitivity, I can't honestly say that it has ever triggered a CH hit, but I do know that when I'm in cycle, I am much more sensitive to the strobe light effect of driving among trees on a nice sunny day. Out of cycle, doesn't bother me a bit. For some reason, the flickering just seems to make me uncomfortable????
Advice - wear really really dark sunglasses! 
Hang in there Scott. - And, stay away from the damned yellow jackets!
Sandy
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Gator
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Re: Strange summer cycle
« Reply #7 on: Aug 21st, 2006, 2:00pm » |
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Hi Scott. Sorry to hear that things are getting sideways on you. The oversensitive skin thing may be a form of Allodynia. This link will explain what Allodynia is:
http://www.painonline.org/allo.htm
Apparently, many clusterheads complain of hypersensitivity to touch stimulus during a cycle. There was a researcher at the Dallas Convention, doing tests on volunteers for this disorder.
Here is information on a clinical study on Allodynia in CH:
http://clinicaltrials.gov/ct/show/NCT00329836
This study is listed as still recruiting. According to the webpage - everyone, chronic or episodic - in cycle or not can participate if they meet the criteria. Hopefully, those close enough to the study will participate.
Here is a pubmed article on allodynia and CH
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed &list_uids=15546264&dopt=Abstract
I hope things get back to "normal" for you quickly and that the beast loses your address.
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E-Double
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Re: Strange summer cycle
« Reply #8 on: Aug 21st, 2006, 2:07pm » |
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That's right!!
We took part in a study in Dalcon.....
The real problem is this:
Quote:| I had been training to run a marathon |
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You're nuts 
Bless you brother and hope it is swift!
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I can't believe that I have to bang my
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