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Topic: You're not new to me, but I'm new to you...lol (Read 417 times) |
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Linda416
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You're not new to me, but I'm new to you...lol
« on: Jul 14th, 2005, 7:24pm » |
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Hi,
My name is Linda and I've been checking out these boards for a few years now. I have been getting CH since I was 13 (25yrs), misdiagnosed until about 8 years ago. The only reason I was diagnosed correctly even then was because I went on an internet search to find out what the hell was happening to me...and NO, it is NOT MY SINUSES and I DO NOT HAVE ALLERGIES!! Omg, that's still all I hear on this subject. 
Anway, I've been checking out these boards for a while to see how others deal with their pain. I am episiodic, normally one cycle a year in the spring. However, about 3 years ago I started taking prednisone to get rid of these nasty things and since then they have started to change. I started having cycles in the fall instead and this year I got them now?? Hmmm, interesting to say the least. I also noticed that they seem to be stronger and last longer than used to.
So, I came back to see what was new and found all that interesting information about kudzu. Who would have thought? Anyway, the pred didn't work for me this time...and actually that is a Godsend because I really felt crappy when I took it, it gave me what I call pressure headaches. So, I decided to give kudzu a try. I also called my Doc and asked him if he could call me in a prescription of O2 just in case. I haven't tried that yet, but have read that it helps a lot of people in here. I like the idea of having something around when an attack starts rather than riding with it until I can get something. These things are omg, well you know. My cycles normally start by waking me up at 2am and progress from there, by the end of it I get 4 or 5 a day during the day and at night. Needless to say I don't get much sleep and my life sucks. My husband and kids try to understand, but as we all know there is no way they can possibly get just how bad these things hurt. After a few weeks they start getting cranky and resentful, but you know...so do I! lol Hate these things.
Anyway, I want to thank all of you for the wonderful information here. I really love that I can come here and see different things that help people, it's wonderful. It's great to know that there are people out there who understand, I'm just sorry that it happens to all of you too. It was a scary feeling being alone and not knowing exactly what these were, but it breaks my heart more to know there are so many others who suffer from this.
Good luck to all of you in finding relief.
Linda
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BobG
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Re: You're not new to me, but I'm new to you...lol
« Reply #1 on: Jul 14th, 2005, 7:39pm » |
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Hello Linda,
Sorry you're hurting but it sounds like you are on the right track to relief. Please tell us more.
And, there's an OUCH Convention in Dallas. You probably already know that. If you leave now you can be there in time. It starts in 10 minutes. 
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| « Last Edit: Jul 14th, 2005, 7:40pm by BobG » |
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Linda416
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Re: You're not new to me, but I'm new to you...lol
« Reply #2 on: Jul 14th, 2005, 8:37pm » |
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on Jul 14th, 2005, 7:39pm, BobG wrote:Hello Linda,
Sorry you're hurting but it sounds like you are on the right track to relief. Please tell us more.
And, there's an OUCH Convention in Dallas. You probably already know that. If you leave now you can be there in time. It starts in 10 minutes. |
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Thanks Bob, you'd think I'd be used to this after all these years, but I don't think that can ever happen. It's so odd how they can change. Lately I've been noticing that when I'm having a particularly bad day I have a hard time breathing, I think it may be me panicking I don't know.
I wish I could go to that convention, that would be great! I'm in Colorado Springs, maybe if I run??
LOL
Linda
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RichardN
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Re: You're not new to me, but I'm new to you...lol
« Reply #3 on: Jul 14th, 2005, 11:56pm » |
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Hi Linda and Welcome
Do get your 02 as soon as possible. Make sure you get the 15 lpm regulator and non-rebreather mask (the one with the bag).. I can't take triptans and 02 is my only abortive. If used early on in the attack, can kill the beast in minutes.
Many here use Melatonin (OTC) to good effect for reducing frequency and intensity of night hits (be prepared for some grogginess)
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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Linda416
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Re: You're not new to me, but I'm new to you...lol
« Reply #4 on: Jul 15th, 2005, 1:11am » |
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on Jul 14th, 2005, 11:56pm, RichardN wrote:Hi Linda and Welcome
Do get your 02 as soon as possible. Make sure you get the 15 lpm regulator and non-rebreather mask (the one with the bag).. I can't take triptans and 02 is my only abortive. If used early on in the attack, can kill the beast in minutes.
Many here use Melatonin (OTC) to good effect for reducing frequency and intensity of night hits (be prepared for some grogginess)
Be Safe, PFDANs
Richard |
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Oh shoot, this thing only goes up to 8! I didn't see your message before they delivered it. I will call them tomorrow. They didn't give me a mask either, they gave me a nasal cannula. Should I have them switch that too?
Thanks for the information, I will definitely check out the Melatonin...I remember seeing a link somewhere but I read so much in here I forget where it was...lol
Thanks again, you've been a HUGE help!
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Topical
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Re: You're not new to me, but I'm new to you...lol
« Reply #5 on: Jul 15th, 2005, 5:34am » |
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Hi Linda, O2 is great. Definitely better than sitting out the pain.
Most people use the mask. I have seen it mentioned as a must have but the nasal canula can work. Breathe slowly through the nose deeply. Visualize the O2 stream as you are breathing in. Exhale through the mouth. You get a rhythm going and the cool oxygen in the nose is also nice distration.
I used a nasal canula the last time the CH monster reared its head. I had with excellent results. Same thing as you, there was a mix-up. I wanted immediate relief and found it using the canula. This time out I am using the mask.
If you can switch them out do so. Getting the mask may require another script from the doc. (It depends on what he wrote on your original prescription). But don't let having the nasal canula prevent your taking the O2. It may dry out the nose which can be an irritation after long usage. It should work within 5-10 minutes. The longest attack I have had when using O2 was 25 minutes. (That was a Kip 9-10.)
The non-rebreathing masks are fairly cheap.
The instant you feel the HA come on, drop what you are doing and get to the O2. The sooner you get to it the better. It may abort the HA completely before it comes on if you do that. (Going from my own experience with it.)
Take care! Let us know how you are doing with the O2.
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| « Last Edit: Jul 15th, 2005, 5:36am by Topical » |
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Linda416
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Re: You're not new to me, but I'm new to you...lol
« Reply #6 on: Jul 15th, 2005, 1:42pm » |
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Thanks to all of your great advice I think I'm on the road to obtaining the correct equipment...woohoo!
I could have used this this morning, I woke up at 4am with some pain. Nothing like it could have been, seems like the kudzo is doing something, but it still hurt. I'd say a kip 4-5 for about an hour. I could tell that if I hadn't taken anything it would have been an ER visit attack. Thank God it's working. So, I tried the oxygen but I don't have the mask yet so I had to do the nasal thing and it HURT! Omg, it was making my eyes water having that air forced up my nostrils like that. I can't wait for that mask to get here, hopefully it won't take too long.
I called the oxygen place this morning to ask them how it would work if I purchased my own regulator. I told her I found some brand new 0-15 lpm regulators on eBay for $47.99 and she told me I should get one because they can't even get them that cheap.
The kicker is though that she said she doesn't know how her boss would want to handle this situation if I bought my own regulator because then they wouldn't have a reason to charge me a fee every month ($25) and she said that they won't just let me keep their tanks here and only charge me a $10 refill fee. She said the only thing she could see happening is if I buy my own tanks at $80 a pop! She also said that they only carry two high flow regulators and since my doctor only said 2lpm on the script they wouldn't rent one to me. I already bought one today on eBay so I don't care about theirs, they can stick it in their kazoo for all I care, lol
Omg, it's always something isn't it? I said, well I don't want to buy any tanks until I know for sure this is going to work for me so she told me she would talk to her boss and find out what else we can do. Yikes...blah, lol Why does this crap always have to be so hard...drives me nuts.
Anyway, I'm feeling kind of blah today. That dinger this morning kind of wiped me out, but it still was a lot better than feeling the real deal.
Hoping everyone has a pf day today!
Linda
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| « Last Edit: Jul 15th, 2005, 1:43pm by Linda416 » |
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BobG
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Re: You're not new to me, but I'm new to you...lol
« Reply #7 on: Jul 15th, 2005, 2:08pm » |
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If you find that O2 works for you, and you probably will, then the $80 for your own tank isn't a bad price, In my opinion.
That way you will always have a tank for the surprize visits from the devil. There will be more attacks sorry to say, it happens to us all.
And if your prescription runs out you can get O2 refills at a welding shop.
Did you check under the 'oxygen info' button on the left side of your screen? There's even pictures of the correct mask and regulator. Some find the O2 dries the throat. There are bubblers available to add moisture.
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Linda416
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Re: You're not new to me, but I'm new to you...lol
« Reply #8 on: Jul 15th, 2005, 2:44pm » |
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on Jul 15th, 2005, 2:08pm, BobG wrote:If you find that O2 works for you, and you probably will, then the $80 for your own tank isn't a bad price, In my opinion.
That way you will always have a tank for the surprize visits from the devil. There will be more attacks sorry to say, it happens to us all.
And if your prescription runs out you can get O2 refills at a welding shop.
Did you check under the 'oxygen info' button on the left side of your screen? There's even pictures of the correct mask and regulator. Some find the O2 dries the throat. There are bubblers available to add moisture. |
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Hi Bob,
I had my doctor write as needed on the prescription and the oxygen company said they can give me whatever I need. I paid for the rental for their regulator so I'm covered for the month. I figure this should be enough time for me to know whether or not the O2 will work and then I can buy some tanks from them. She just called me back and told me that the $80 is for any tank size that they carry so I can get one of the bigger ones for that amount. I should call back and ask about a portable one and see what that runs.
I ordered the non-rebreather mask from an online medical supply company. It was only $1.95 which surprised me, but I don't know how long it will take to get here. Hopefully soon. I also ordered a disposable humidifier so that's on the way too. It was from a separate company though, the original one didn't have them. So, phew...lol, in a few days I should be all good.
So, what do you mean there will be more attacks? Do you mean I might get hit out of cycle or that the length of the cycles might increase? That really sucks if that's the case, oh man. If it gets much worse than this I probably won't be married anymore, but I guess that's the nature of the beast. Seems like people forget, including me sometimes, just how bad it gets when it's full blown. It adds even more stress worrying about everyone else, that's for sure.
Thanks for your reply, it is much appreciated.
Linda
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BobG
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Re: You're not new to me, but I'm new to you...lol
« Reply #9 on: Jul 15th, 2005, 2:56pm » |
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Quote:So, what do you mean there will be more attacks? Yes
Do you mean I might get hit out of cycle Yesor that the length of the cycles might increase? Yes |
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I hate to be the bearer of bad news.
You're still young, you have a long way to go before outgrowing them.
We have people here in their 50's and 60's having regular attacks. I'm 58 and haven't had a 'real' cycle for about 6 years. But, each year I go through clusters of shadows. I'm in one now. Been having shadows everyday for the last 2 weeks. Yesterday I relaxed a little after work and the shadow went from a kip2 to a 6.
Just hate when that happens.
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RichardN
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Re: You're not new to me, but I'm new to you...lol
« Reply #10 on: Jul 19th, 2005, 7:58pm » |
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Hello again Linda
Have you been able to make the 02 work for you yet?
How about the Melatonin?
Let us know how you're doing.
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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Linda416
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Re: You're not new to me, but I'm new to you...lol
« Reply #11 on: Jul 20th, 2005, 12:42am » |
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on Jul 19th, 2005, 7:58pm, RichardN wrote:Hello again Linda
Have you been able to make the 02 work for you yet?
How about the Melatonin?
Let us know how you're doing.
Be Safe, PFDANs
Richard |
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Hi Richard!
Sorry, I've been busy with school stuff. Well, I couldn't tell for sure about the oxygen because of the nasal cannula thing, but I think it has been working. I'm taking kudzu also and I must have messed up on the dosage or something because it worked great the first day, then all hell broke loose. I now take 2 at 8am, 2 at 2:30 pm and 2 at 10pm and that seems to be working better. I still get hit at night, but they are only about KIP4's and they've going away faster with the 02.
I tried the melatonin, but that night I had about a KIP7 and I couldn't get rid of it, lasted for over 2hrs so I'm afraid to take it again. I don't know if it was that or not, but I don't want to find out either...lol
Anyway, I've been taking the kudzu for 1wk today and even though I'm not 100% pf I'm close enough to make me happy. I feel normal again, which is fabulous! Occasionally I'll feel something stirring around up there, but then it goes away after about 15 minutes...it does make me a little nervous thinking a hit is coming, but it goes away so yay!!
I just received the rebreather mask today and I've been getting small hits every night so I'm sure I'll get a chance to use it tonight. I'll post tomorrow and let you know how that goes. I fell asleep last night with the nasal cannula, but I never put it over my ears so it fell off and I wasted 1/2 a tank of 02  Oh well, it's only $10 to refill, but still...lol
Thanks for checking on me, I appreciate it! I'll write in tomorrow and let you know how the mask works for me 
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BobG
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Re: You're not new to me, but I'm new to you...lol
« Reply #12 on: Jul 20th, 2005, 4:30am » |
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Quote:| If it gets much worse than this I probably won't be married anymore, |
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Would he leave if you had a broken leg? or cancer? If he leaves because of headaches then you're better off without him.
About the mask.........cut the headband strap off. You don't want to fall asleep with the mask on. With the strap off it will fall away from your face if you go to sleep. You don't want to breath pure O2 all night.
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Linda416
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Re: You're not new to me, but I'm new to you...lol
« Reply #13 on: Jul 20th, 2005, 3:50pm » |
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on Jul 20th, 2005, 4:30am, BobG wrote:
Would he leave if you had a broken leg? or cancer? If he leaves because of headaches then you're better off without him. |
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Ya, I understand what you're saying and I also know it's not easy to live with me when I'm in a cycle. I don't get much sleep and I'm very tired and cranky so I try to be more understanding of his impatience, but when I'm that exhausted it's nearly impossible to give two shakes what he thinks about anything, lol I also realize he has no idea what these feel like, and will never understand that part of it. I need to be more understanding of what it's like on the other side for the people who live with those of us who get these things. It's hard on everybody I guess. He's getting better now, I made him read some stuff for the 1,000th time...I guess he needed a refresher, lol
Thanks for the advice with the mask, I will definitely not be putting those straps around my head.
Linda
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Topical
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Re: You're not new to me, but I'm new to you...lol
« Reply #14 on: Jul 23rd, 2005, 8:39am » |
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I called a company and they did the exact same thing to me with their stupidity they lost a customer. As I was not about to pay for that stupid regulator rental.
It was a big hassle finding a place that would sell the equipment but I did. "Professional Medical Services" was the name of the place. I don't know if they are franchised or not but thought I would pass that along to you.
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Linda416
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Re: You're not new to me, but I'm new to you...lol
« Reply #15 on: Jul 23rd, 2005, 12:36pm » |
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on Jul 23rd, 2005, 8:39am, Topical wrote:I called a company and they did the exact same thing to me with their stupidity they lost a customer. As I was not about to pay for that stupid regulator rental.
It was a big hassle finding a place that would sell the equipment but I did. "Professional Medical Services" was the name of the place. I don't know if they are franchised or not but thought I would pass that along to you. |
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Hi Topical,
Thank you for the information, I will check and see if we have them here.
Linda
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Linda416
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Re: You're not new to me, but I'm new to you...lol
« Reply #16 on: Jul 24th, 2005, 12:13pm » |
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A small update  (Yes, that is a smile!)
I've been taking Kudzu for two weeks this Tuesday (july 26) and it has been helping tremendously. I don't get any daytime hits anymore, once in a while a few shadows and a feeling like one is coming, but it doesn't...yay!
I still get nighttime hits, but the severity of them has decreased immensely. They are enough to wake me up, which is when I grab the 02! I could feel a few of them were going to be head bangers, but the 02 stopped them
Before I got the mask and the new 15lmp regulator it would take about 15-20 minutes and the force of the air through the canula was very uncomfortable. Now that I have all the right equipment and my mask is working correctly I start to feel relief very quickly, within just a minute or two and after about 5-7 minutes it's gone completely! I don't feel uncomfortable because the air isn't being shot at me through a tube, lol It's wonderful!
I have my life back and I can't thank you all enough, especially you Richard you have given me a wealth of information that has put me back together! I appreciate your concern and understanding, you are an angel! 
I thank you, my kids thank you and most of all my husband thanks you...lol
Love & Hugs and wishing you pfdans! 
Linda
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nani
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Re: You're not new to me, but I'm new to you...lol
« Reply #17 on: Jul 24th, 2005, 12:44pm » |
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Hi Linda...
I don't know your kudzu regimen, but adding (or changing to) a dose about an hour before bed may eliminate those night time hits. Just my 
Glad you're getting a break. PF wishes, nani
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Linda416
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Re: You're not new to me, but I'm new to you...lol
« Reply #18 on: Jul 24th, 2005, 4:47pm » |
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on Jul 24th, 2005, 12:44pm, nani wrote:Hi Linda...
I don't know your kudzu regimen, but adding (or changing to) a dose about an hour before bed may eliminate those night time hits. Just my
Glad you're getting a break. PF wishes, nani |
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Really? I might try that! I take the recommended amount now that's on the bottle. You think I can add another one? I tried spacing them out during the day, but that didn't work very well I got hit that night very bad and that was before I got the 02 so it was yucky.
Thanks for your 2 cents, I appreciate it!
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nani
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Re: You're not new to me, but I'm new to you...lol
« Reply #19 on: Jul 24th, 2005, 5:02pm » |
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I wouldn't recommend going over the suggested maximum dose, though I'm not sure it would be harmful. One tester went over and had no ill effects. It didn't help him though. 
What I do recommend is "pulsing" your doses. Take your biggest doses before your biggest hits. IE:
Let's say your most active CH time is early morning and the middle of the night. Let's also say you take a brand that says you can take 6 a day.
You can take 2 in the AM, 1 in the afternoon and 3 at bedtime. Please feel free to PM me anytime, linda. 
Good luck and PF wishes, nani
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stomper
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Re: You're not new to me, but I'm new to you...lol
« Reply #20 on: Jul 24th, 2005, 9:21pm » |
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hey now, the wife left, 17 yrs together, 11 yrs ch, she said ,I was suckin the life out of HER !!!! " THE BEAST BEATS MY ASS EVEN MORE!!" wonder if any body hears me?? allthebest2all jimm
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Linda416
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Re: You're not new to me, but I'm new to you...lol
« Reply #21 on: Jul 24th, 2005, 9:56pm » |
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on Jul 24th, 2005, 9:21pm, stomper wrote:| hey now, the wife left, 17 yrs together, 11 yrs ch, she said ,I was suckin the life out of HER !!!! " THE BEAST BEATS MY ASS EVEN MORE!!" wonder if any body hears me?? allthebest2all jimm |
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I hear you and I'm sorry this happened to you  I hope things get better for you soon.
Linda
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nani
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Re: You're not new to me, but I'm new to you...lol
« Reply #22 on: Jul 24th, 2005, 9:56pm » |
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Hey jimm, sorry things are hitting the fan, bro. You must stay strong...you WILL win. This mofo is a coward, you are not. Hang in there, sweetie. Prayers, PF vibes and hugs, nani
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