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Tam Tam
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Kinda Sorta New
« on: Oct 31st, 2006, 1:56am » |
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My name is Tammy, I'm 46 and I'm kinda sorta new here...
I lurked around a bit Aug of 2005 near the end of a 16 week cycle of what I now can clearly mark ( what a wonderful thing that scale is ! ) as mostly KIP 7 and 8's once a night, but every stinkin' night for two hours at a time! 
I was shuffling back and forth between 3 doctors ( who all gave me massive doses of antibiotics for sinus infections I now know I didn't have ) and a dentist. When my (now former ) dentist told me that perhaps it was time to see a shrink for my "little problem"  I knew it was time for my own research and a new f*$cking dentist!
Anyway, I'll try to make a long story short. My new dentist referred me to his TMJ Professor at UCLA. Luckily for me, the professors wife was a CH sufferer and he knew instantly what my problem was. Two shots of Imitrex, then 10 days of Pred and I thought I was in the clear. Since mine started Approx in May I thought I had beat it when it didn't re-appear. ( since I had read that so many people had it return at the same time every year ) I quit reading the boards thinking I was done with the beast. 
Well, Oct 25th 2006 and it's baaaccckkkk!
Only this time on the left instead of the right but now I know that that is not unusual. But is it usual for them to change in duration and intensity also? These are only about a KIP5, lasting about 20 minutes but one night occured every hour on the hour ( I could have set a timer to it they were so perfectly set apart!) Of course, I slept very little. I have some prednisone I had picked up last year as a little "insurance" and I've been taking 40MG since the 27th. They're gone for now, but I know I can't stay on this forever.
I've got to find a Dr I suppose and get this officially diagnosed.
But anyway I mostly wanted to introduce myself since it appears that I'm going to be a regular now!
I love reading all your posts, I'm sure you all know what it's like to realize that you really aren't "crazy" and that this isn't just a "little problem".
Tam
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leftsideonly
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Re: Kinda Sorta New
« Reply #1 on: Oct 31st, 2006, 2:16am » |
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Hi ya Tam,
Sorry your back because of CH's -- but welcome from another newby to the site. I did the samething chasing sinus problems that exsisted but weren't causing the headaches.
I haven't had them change sides on me but the evry hour thing - OH YA! During the peak of my cycle I have them every two hours like clock work. They usually last about 40 min on average - including the wind down after the visit from the beast it takes over an hour to return to sleep. Gets old not sleeping. But hang in there things will het better.
I would try to find a good Neuro in your area that is familiar with CH to get the "diagnosis" and try to get oxygen prescribed. I am working on this right now - I hear its like gravy for the brain. Well my biscuit is a little dry and in need of gravy. Hope to get the ok from my doc - n - the box for the O2 this week. I have also tried Melatonin for night hits and seems to be working well. You can get it over the counter too. I would also suggest Red Bull for daytime use if you have hits during the day.
A word of caution about using Meds - I used Zomig for the peak of my episode this time and it has lingered on longer than normal this time. May or may not be a direct connection beteen the amount of Zomig I took (length of time) and the episode lasting longer - the Doc-N-the box thinks so.
Anyway glad your back - wish it were different reason than another episode.
Oh and no your far from crazy hun!!
Peace and PF wishes,
Andre
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MJ
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Re: Kinda Sorta New
« Reply #2 on: Oct 31st, 2006, 2:22am » |
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Hi Tammy good you came back to the right place for CH
[quote author=Tam Tam link=board=knowya;num=1162274197;start=0#0 date=10/31/06 at 01:56:3
I have some prednisone I had picked up last year as a little "insurance" and I've been taking 40MG since the 27th. They're gone for now, but I know I can't stay on this forever.
[/quote]
Be carefull with the pred, make sure to taper down from it as bad things can potentially happen when you just quit taking it cold from 40 mg. and higher
Some of us really are crazy. But most are ok.
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MJ
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Tam Tam
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Re: Kinda Sorta New
« Reply #3 on: Oct 31st, 2006, 3:26am » |
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Andre
Wow, if you could find me a DR that would be outstanding!! 
The one listed at OUCH in Simi Valley seems to have moved on or something, I can't find a phone number.
I do realize that I can't keep taking the Pred for the next 16 weeks hoping to avoid the devil entirely but I was hoping to at least keep it up just enough until I can find a Dr who can do some other drugs or O2 or??
Can I start taking the Melatonin now, even while I'm taking the Pred? And a starting dosage, 9 mg? I see that number listed alot here.
Thanks for all the good advice. It's way past my bedtime but even with the Pred I'm STILL afraid to go to sleep!
TTY Manana
Tam
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Kirk
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Re: Kinda Sorta New
« Reply #4 on: Oct 31st, 2006, 4:22am » |
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Yes you can try the Melatonin now. Everyone is different with the dosage, and you probaly won't find whats right for you until after you're off pred. But I'm not a doc and Your milage may vary.
9 Mg. does seem to be about the average though.
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RichardN
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Re: Kinda Sorta New
« Reply #5 on: Oct 31st, 2006, 10:43am » |
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Hi Tam Tam & Welcome
First, a note about the Melatonin . . which does help many with the night hits . . . and I have used at 6mg. I would suggest you start with 3mg, then 6mg . . .then 9mg if 6mg doesn't do the trick. Reason being, it will help get you used to the grogginess that Melatonin produces. More than one (myself included) have had the experience of being wakened by a hit and, " what woke me up? . . . oh yeah, him again ". . . and reach for the 02 . . . which is my only abortive. If not used to it, and not expecting it . . . tis a bit disconcerting.
DO copy info of this board (someone will be along with the link(s) and take to your doc. 02 requires a prescription and you will need a 15 lpm regulator and non-rebreather mask (the one with the bag) or Clustermask . . . works for 60-70% of us to abort an attack . . . I can kill the beast in minutes if used early-on in the attack . . . and it's fairly inexpensive . . .and no side effects. But the info to your doc is MOST important as many (if not most) docs just aren't aware that 02 IS a viable abortive for CH. DON'T leave his/her office without it.
Don't discount the "water X 3" (link to left). I am absolutely convinced this therapy has helped me reduce the frequency/intensity of attacks . . . . it takes a LOT of water.
Verapamil works for many (and did for me) . . .your doc will taper-up til you find the right dosage. When I came here 2/02 (having 6-8 attacks per day) I had my first PF day (in a VERY long time) at 240mg (had three that night, but had the 02 to kill them) . . .got up to 360 mg. Many here take MUCH more and some in combinations with other drugs like lithium. Have to find what works for you.
You have much reading to do and many questions to ask . . . fire away . . . the answers/info/caring/sharing you will get here comes from folks who truly know your pain.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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roy21302
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Re: Kinda Sorta New
« Reply #6 on: Oct 31st, 2006, 3:27pm » |
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Hi Tam, welcome to the board, sorry your getting hit right now stick around and read you'll find lots of tips on here and friends to talk to. The advice posted above by Richard is really ace, if you use that you'll be half way there, here to PFDN Cheers Roy 
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Tam Tam
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Re: Kinda Sorta New
« Reply #7 on: Oct 31st, 2006, 6:30pm » |
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Oh my gosh, you are all so wonderful! Thank you for all the wonderful advice!
I'm trying to find a Neurologist in my area but I'm still going to print out all the things I have found here ( and all the things Richard suggested) just in case.
The O2 sounds good, I hope the Doc will write the RX to get it. They should. I'm luckier than most, I have really good PPO insurance that I pay a fortune for but has proved to be worth every dime!
Now the Verapamil, that's for high blood pressure isn't it? I believe the good professor at UCLA was going to write me an RX for it but then he discovered that I have notoriously LOW blood pressure ( not uncommon for it to be 92/70 ) so he nixed that.
And the Zomig Andre talked about, I always heard that was for migraines.....how does that work? ( or is it another case of, we don't know, it just does? ) 
And one last question ( for right now anyway!) If you are eposodic, are the med's you are taking something you must take forever ? or do you only take them when you get an attack? or?
My apologies if I am being a pest. I'm a Sheriff dept dispatcher so I get paid to ask questions, talk alot, type fast and get the job done!
You all are the best.......and all the best people know it!
Tam Tam
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leftsideonly
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Re: Kinda Sorta New
« Reply #8 on: Nov 1st, 2006, 12:07am » |
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Thats kinda the thing Tam you just have to try things to see what works for you. The Zomig gave me 12 - 24 hour of pain free time from one dose. However, alot of these meds have side effects so its best to work as closely with your doc-in the box until you find a good Neuro. Heavy Zomig use seemed to have prolonged this episode for me. Most meds, if your eposodic don't have to be taken while not in an episode.
I wish you luck sweety - hang in there!!
Peace and PF wishes,
Andre
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chopmyheadoff
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Re: Kinda Sorta New
« Reply #9 on: Nov 2nd, 2006, 3:52am » |
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shame your only around when you need help.
lots of us here have been pain free for a while.
me included
still here though
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Barak
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Re: Kinda Sorta New
« Reply #10 on: Nov 2nd, 2006, 8:37am » |
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well i think you have everything already covered from other posts. but welcome to the board. stick around and read and learn. one of our best weapons is knowledge and we are full of it lol. we are lal pretty good at talking to  so if you ever need help all you have to do is ask. feel free to message me and good luck in your fight!
Barak
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Sandy_C
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Re: Kinda Sorta New
« Reply #11 on: Nov 2nd, 2006, 7:24pm » |
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Hi Tam, and welcome.
One thing about Melatonin that I've learned by reading other's posts, and by personal experience: I take 9mg every night while in cycle, without fail. The first time I took it, I felt groggy the next morning, but a couple cups of strong coffee knocked that out.
I still got hit. You need to stick with the Melatonin for several days/nights before it gets in to your system and can provide some help to you. It may not work the first time you use is, but over time, it definitely helped me.
Sandy
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Giovanni
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Re: Kinda Sorta New
« Reply #12 on: Nov 2nd, 2006, 7:30pm » |
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on Oct 31st, 2006, 2:16am, leftsideonly wrote:
A word of caution about using Meds - I used Zomig for the peak of my episode this time and it has lingered on longer than normal this time. May or may not be a direct connection beteen the amount of Zomig I took (length of time) and the episode lasting longer - the Doc-N-the box thinks so.
Andre
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I feel the same way about the episodes being longer with triptans. Mine are WAY longer than they used to be without them.
Good luck to you and hoping you find relief soon.
John
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writer
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Re: Kinda Sorta New
« Reply #13 on: Nov 5th, 2006, 8:59pm » |
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Tam-- The frequent hits at night come when you enter periods of "REM" (rapid eye movement) sleep. You can read up on REM sleep on the Internet.
In addition to the melatonin recommended by others, you might want to keep a pot of brewed coffee on the stove. I found it helped a lot with the painful (and lonely!) night hits.
As you can read elsewhere on this site, the caffeine shrinks the swollen vessels in your head/face. And oh yes, during a CH cycle, no amount of caffeine ever gave me insomnia (which would happen in a non-CH time).
All good luck and lots of pain-free time, Barbara
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