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Topic: I might be a Clusterhead?? (Read 831 times) |
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CostaRicaKris
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I might be a Clusterhead??
« on: Sep 27th, 2007, 1:26am » |
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I haven’t been diagnosed with cluster headaches (but that might change when I go see my Dr. tomorrow) I first started having horrible headaches in the Fall of 2001. They would start with a burning stabbing pain under my left eye. The left side of my face burned, my left nostril was congested and then runny and my left eye would twitch and water. They always came on at night and I would writhe in pain. My husband would drive me to the ER where they would treat me like a druggie. They’d give me Vicodin, Imatrex, Methadone, Morphine, shoot Novocain into my head – nothing worked. Then suddenly, the pain would be gone. I had CAT scans done, was sent to ENT and Neurology. I was told I drank too much coffee. No one mentioned Cluster Headaches. The pain was so bad at times I BEGGED my husband to kill me. One night in the ER, I was told that my blood pressure (187/ 86) and pulse (180) were so high, that if I didn’t go on beta-blockers right away I would probably drop dead of a stroke (yes, the Dr actually said that) It was a real shocker since I was only 30, thin, white and a otherwise a very healthy marathon runner. Not exactly the typical hypertension patient. Anyway, I started taking the beta-blockers (Atenonol) and the headaches stopped. I’ve been taking the pills ever since, but guess what …. They’re back!!! I haven’t slept in three days. When they start, I feel the familiar burning along my left cheekbone and I have been SO scared that I would have to go through that whole nightmare again. But, thanks to this site, I’m going to see the Dr .tomorrow morning (if I can just make it through one more night) armed with some knowledge.
Thank you,
Kris
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George_J
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Re: I might be a Clusterhead??
« Reply #1 on: Sep 27th, 2007, 1:36am » |
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Welcome, Kris.
There is no substitute for a definitive diagnosis, and I'm glad to hear that you're following through.
That said, from what you describe, I won't be surprised if your doctor says you've got 'em. If that is the case, let us know--we'll be happy to discuss treatments and tactics. CH is a hard road, but we'll help you negotiate it as best we can.
Please remember that most of us are not doctors, but we are expert and experienced patients.
Best wishes, and again--welcome.
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Ctech
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Re: I might be a Clusterhead??
« Reply #2 on: Sep 27th, 2007, 1:47am » |
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Hi Kris!
Sorry to hear you may have cluster headaches  If it turns out that you do, you have found the right place for helpful advice.
This is off topic but I am curious about your screen name - are you Costa Rican? Just wondering because my wife is from there.
If the doctor confirms that you have cluster headaches make sure to tell him/her to give you a prescription for oxygen, it works great (kills most of my attacks in less than 15 min.) If you look to the left of the screen and click on the info tab it will give some info that you can take with you to the doctor.
Good Luck!
-Chris
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CostaRicaKris
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Re: I might be a Clusterhead??
« Reply #3 on: Sep 27th, 2007, 5:02am » |
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Hi Chris,
No, I'm not from Costa Rica - I'm from California. My husband and I spend our honeymoon in Costa Rica and fell in love with it. It’s a beautiful country with the kindest people you'll ever met. Obviously you know since you married one.
btw, I just read another newbie post describing shadows as "dull aches in my cheekbones and eyes and the lower part of my neck and skull feel like they're burning" - That's exactly what I feel! Maybe I'm not nuts afterall.
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Emily
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Re: I might be a Clusterhead??
« Reply #4 on: Sep 27th, 2007, 8:19am » |
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Hello!
I think that might have been my post about the burning sensations. You are definitely not nuts! I thought exactly the same thing until I read a few posts here. I sometimes get that without a headache setting in - like the devil is just warning me that it's still hanging around!
Fingers crossed for your doc's appointment. Hope it all goes well. I'm going tomorrow to arrange my oxygen prescription. A little nervous about it - all this medication is daunting. Quite a few people responded to my post about high energy drinks and strong coffee. I'm waiting for the next one (probably in about 3 hours) to give it a try!
Em
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Bob_Johnson
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Re: I might be a Clusterhead??
« Reply #5 on: Sep 27th, 2007, 8:36am » |
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You know that you will find support here but it's very premature to declare CH. Following thru with your docs is the best single step for now: without a good Dx little we can beyond support.
DO not be surprised if getting a firm Dx is not an easy job. Headache syndromes often flux/change locations/presentations, etc. so that even the best of docs have a difficult time making a Dx. That you have a doc with experience/knowledge in working with headache is the best single step to take for now.
Doing some reading will give you comfort; knowledge counters anxiety.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Consider exploring these two sites after you get a firmer idea of what the headache type is:
http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
======================================================================== =
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.plainboard.com/ch/chtherapy.pdf
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Bob Johnson
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Guiseppi
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Re: I might be a Clusterhead??
« Reply #6 on: Sep 27th, 2007, 10:17am » |
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Welcome to the board Costa.....and make no mistake...it's quite possible you're still nuts...just not about the headaches!!! 
If you're not already keeping a headache diary start one. When the headaches start, how fast they build to peak, how high the peak is how long they stay there and how fast they leave. Like Bob said, when you're dealing with the brain the diagnosis is tricky, the more info you give the neuro the better.
For now, you might want to keep some energy drinks on hand, rock star, monster etc........any that contain both taurine and caffeine, many can abort an attack by slamming one of those at the first sign of a headache.
I rarely get the night terrors.....that slammer 90 minutes after you get to sleep....those that regularly get them have posted success using melatonin, it's some kind of an herbal supplement you can buy over the counter at vitamin stores....it's helped many avoid the wake up attacks.
Good luck at your appointment. I hope you don't have CH...if you do welcome to your new second home!!! And get your hubby on the supporters board, been a big help for my wife to bitch about me with all the other spouses and get a better understanding of these.
Guiseppi
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CostaRicaKris
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Re: I might be a Clusterhead??
« Reply #7 on: Sep 27th, 2007, 7:50pm » |
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Thanks all for your suggestions and comments.
Emily, yes, it was your post that I was referring to.
I apologize if I posted to this board prematurely. I guess I just felt a kinship to you all since the pain I've been feeling so closely matches what is described here. And this is the first site I found that doesn’t seem to be all about pushing drugs.
Anyway, I went to the Dr. today. He did the basic neurological tests "Push my hands, squeeze my fingers etc" He already saw in my file that I've been through many test last time this happened. They had already ruled out sinus infection, brain tumor, dental issues etc. He consulted with another Dr and said they believed it was in fact cluster headaches. He talked about putting me on verapamil, prednisone and a bunch of other stuff I can't remember and he suggested the oxygen tank. He said that the Atenolol that I had been on for the past 6 years is used to prevent both ch and migraines. He's not sure if it's not working anymore or what, but wants me to stay on it incase it does help with prevention and because my bp was high (which he attributes to the pain) Anyway, my HMO requires that only Neurology can sign off on oxygen tanks, so he called them and the Dr he talked to had never heard of oxygen for ch (gotta love Kaiser), even though my Dr. had - he was the one that suggested it. Anyway - very long story boils down to this. I have to call Neurology on Monday to make an appointment with them and in the meantime, I was sent home with Prednisone, Indomethacin and Restoril for sleep.
Living with pain really sucks and my heart goes out to all of you. Whether or not I have ch, I do know what it is to have to live with pain and how it affects every aspect of your life.
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Emily
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Re: I might be a Clusterhead??
« Reply #8 on: Sep 28th, 2007, 3:47am » |
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Hello,
There is some hope in there, which is good news! At least you've got a diagnosis and are on the trial-and-error path to finding a way to beat the beast. And like you say, if you feel you identify with what's being posted here and it helps you, then it's good to have you here!
I'm on the indomethacin now - have been taking it for 5 days on the recommendation of my neuro. The first 2-3 days were hard - constant nausea and a little bit of dizziness. However, this morning I woke with shadows which, as of yet, haven't developed into anything. That's great for me as the mornings (between 6 and 9) are normally when I get my KIP 8/9ers. So either I'm coming out of this cycle, or the drugs are starting to work.
I'll keep my fingers crossed for you.
Good luck with the meds.
Em
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CostaRicaKris
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Re: I might be a Clusterhead??
« Reply #9 on: Oct 3rd, 2007, 9:04am » |
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Prednisone is gone - Pain is back!!!!!!!
It hit at 2am and it's been a stabbing, jolting, headbanging, pacing, stomping, crying, hell of a four hours.
I wasted 2 hours at a "Headache class" yesterday. Today, I'm finally allowed into Neuro for a 10 am appointment.
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Emily
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Re: I might be a Clusterhead??
« Reply #10 on: Oct 3rd, 2007, 5:37pm » |
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A headache class? What on earth is that?
Glad to hear you're finally getting access to a neuro. Fingers crossed they know what they are talking about.
Let us know how you get on.
Em
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CostaRicaKris
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Re: I might be a Clusterhead??
« Reply #11 on: Oct 3rd, 2007, 6:26pm » |
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It's a waste of time is what it is. (For me anyways since it's all about migraines)
But my appointment today wasn't - thank goodness. Since I was in pain when I saw her, she gave me a shot and put me on O2 for about 20 minutes (huge help!). She sent me home with more Prednisone, Topamax, Imitrex and the O2 tank is supposed to be delivered today. She doesn't want me to take the Indomethacin. So, we'll see how it goes. Right now I'm at home waiting for the delivery. It's 3:24 in the afternoon, so hopefully it will come soon.
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swimchica623
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Re: I might be a Clusterhead??
« Reply #12 on: Oct 7th, 2007, 8:12am » |
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I had to go to a headache class once...the doctor talked about not worrying about sounding rude to tell someone to turn the lights/thing-making-noise off, getting away from certain smells, eating at the right time, how bad it was to look completely normal when you feel bad....I was so bored because none of it pertained to me! And then the other half of it was about narcotic addiction because a lot of these people were going off narcotics to get on better medicines to treat their migraines. Luckily, I've had good drs from the start, and only one tried to experiment with narcotics for a very very short amount of time. It was awful, I think it triggered more hits.
Anyway, welcome and if your dr does dx you with CH, this is a good place for lots of information. I hope you get some releif soon and don't get sent to any more silly headache classes!!!! What a waste!
Lisa
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GodHelpMe
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Re: I might be a Clusterhead??
« Reply #13 on: Oct 7th, 2007, 1:38pm » |
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COsta,
I had a very similar experience. I even got on Aenolol(because i also have hypertension) and the cycle skipped a year but came back the next.Thats when i got on Verapamil. I hope and pray you get the treatment that works for you.
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CostaRicaKris
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Re: I might be a Clusterhead??
« Reply #14 on: Oct 7th, 2007, 3:42pm » |
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Intresting, maybe the Atenolol did work as a preventative for awhile.
Update to this string - I Am a diagnosed Clusterhead
My nuero wanted to put me on Verapamil, but said that my pulse was too low because of the Atenolol. She didn't want to take me off of the Atenolol because my BP was so high (because of the CH)
So far, the Predisone and Topamax are working okay. (I'm going down in mg on one while going up on the other - I had to design an excel spreadsheet to keep all my meds straight!) Just having very minor shadows - KIP 1/2. I have O2 and Imitrex incase I get an attack.
~Kris
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Emily
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Re: I might be a Clusterhead??
« Reply #15 on: Oct 7th, 2007, 5:55pm » |
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Well done on getting a diagnosis. Not that ch is a good thing by any means, but at least you know what you're fighting against. 
Did you get any advice with your o2 tank? Mine was delivered last week, but my GP told me nothing about it, and the person who delivered it was clearly not going to know. I've only used it once when the headache got really bad. At what point should I use it? Been getting KIP 5/6s and am just so unsure... I know that with time, the tank will become my best friend but as I sit here typing, I can see it in the corner of my eye, just sitting there looking menacing and scary!
Em
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Groov
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Re: I might be a Clusterhead??
« Reply #16 on: Oct 7th, 2007, 6:34pm » |
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I knew from your first few posts that there was a very strong chance you had CH.
Ya know, Jonny is a good guy here to talk to about setting up your own 02 rig. He's a great craftsman and knows exactly how to do it.
You have found the right board however. It has helped me beyond any of my normal expectations.
Cheers, Dave
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CostaRicaKris
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Re: I might be a Clusterhead??
« Reply #17 on: Oct 7th, 2007, 7:32pm » |
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I used the O2 the first night it was delivered, but haven't needed it since. I may need it later as the dose goes down on my Prednisone. The guy from Apria that delivered it showed me how to use it and how to change the tank. Mine is pretty basic - no bubbler or humidifier.
As luck would have it I happen to be neighbors with a very active member of this board (Guiseppi) who has offered to come over and help me out with it should I have any problems.
Emily, my understanding is to break out the O2 at about a Kip 4/5. I think if you're on the fence about using it, then use it. The sooner you get the O2, the more likely you are to abort the attack. I'm not sure about you, but I was told I have a free pass on O2 now. If I run low, I just have to call. So, I'm not going to be afraid to us it if I need it. I agree - the tanks do look a bit scary.
Does anyone know where I can get a O2 cozy??
Yes, it is good to finally know what I'm dealing with and I am very glad I've found this board. It's amazing to be able to talk to people that not only understand the pain of CH but the years of misdiagnosis and being treated like you're nuts.
Thank you all
~Kris
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Emily
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Re: I might be a Clusterhead??
« Reply #18 on: Oct 8th, 2007, 10:16am » |
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An o2 cozy? What an interesting concept. Perhaps that would make it look more appealing and less scary! Imagine finding that under your Christmas tree from a loved one... 
If I could knit, I would whip one up and send it straight over, but unfortunately it's not one of my skills.
For all you knitters out there, I'll place my order in for one with a kitten pattern on it!
Em
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Guiseppi
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Re: I might be a Clusterhead??
« Reply #19 on: Oct 9th, 2007, 12:14pm » |
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Start a new thread about the 02 cozies!!!!! Someone actually knit one for a ch'er years ago and actually talked about marketing them to make those ugly E-tanks and the menacing M-tanks look a little less hideous....as 02 popularity climbs, I see a niche market!!!!
Guiseppi
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luveemom
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Re: I might be a Clusterhead??
« Reply #20 on: Oct 10th, 2007, 3:43pm » |
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Hey Kris,
I just wanted to say Welcome, and sorry you are in HELL, but you are no longer alone. I read all your posts and I feel your pain. Thank you for responding to my post the other day too....very sweet of you while you are going through HELL yourself. If there is anything I can do don't hesitate to PM or email me. I have been on Topamax for years, and it works for me. If you have any questions about it feel free to ask me and I'll try to help you. There is a lot of negative info around about it, but for some of us it is our magic bullet.....it is not for everyone, but then again NOTHING is......I hope you are doing better today.
Alicia
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writer
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Re: I might be a Clusterhead??
« Reply #21 on: Nov 2nd, 2007, 9:03pm » |
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Kris,
Very sorry for your CH pain. An inquiry--how many mgs. of Atenolol were (are) are taking?
Are you still taking it, along with the other meds?
I have been taking Atenolol for some time for high bp., but I see on the Internet that British doctors (all of them) have decided not to use the drug, at least for blood pressure. Too many side effects.
Hoping things improve a lot soon--
Barbara
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CostaRicaKris
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Re: I might be a Clusterhead??
« Reply #22 on: Nov 2nd, 2007, 10:56pm » |
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Hi Barbara,
Things have improved
I'm still taking 50 mg of Atenolol a day. I'm also taking 150 mg a day of Topamax. My nuero wanted to put me on Verapamil but was concerned that it would drop my pulse to low and it's already very low because of the Atenolol. She didn't want to take me off of the Atenolol because of the bp. For the ch, I also have O2 and Imitrex as needed. I'm actually doing very well. I was having some pretty strong shadows, but they seemed to be better now. This is going to sound weird, but this is the best CH cycle I've ever had.
I haven't heard that about Atenolol, I've been on it for years and haven't had any problems with side effects - Topamax is another story I hope they don't stop using it here, I hate the idea of changing meds after I've found something that works. Have you had any problems with it yourself?
Time for me to start another internet search....
Thanks for the heads up!
Kris
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JohnMcCloy
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Re: I might be a Clusterhead??
« Reply #23 on: Nov 7th, 2007, 1:21am » |
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Sorry to hear about your new found identity but you will see some serious strength in yourself that you may not have noticed before.You seem to be coping quite well & people on this board (Not myself) are quite knowledgeable & can really give you some amazing advice.Certainly have helped me.
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