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Topic: I feel like I found my long-lost family ;) HELLO (Read 3929 times) |
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #25 on: Oct 3rd, 2007, 6:11pm » |
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Just on my way out the door to my art class - the thing that keeps me sane - lol but THANK YOU..... I will write you back tonight, you're a sweetheart. I just started the indo today, and I am sooooo dizzy.. and loopy.. LOL I'm not surprised they thought you were drunk  <-- That's how I feel right now 
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"Know how sublime a thing it is.. to suffer and be strong" HWL
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rforward
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Re: I feel like I found my long-lost family ;) HEL
« Reply #26 on: Oct 3rd, 2007, 9:51pm » |
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Indomethacin is tricky.
As for Dr. M, don't sweat it. He is a pretentious not a very nice person. There are far better neurologists out there...I am waiting to get into Dr. P anxiously! I have heard nothing but good things about him.
Dr. B is fabulous and will help you through this. I doubt I would still be here if it wasn't for him. I have had my run in with bad doctors, the worst being with GPs who kept trying to tell me it was all in my head and prescribe antidepressants to make it go away. Time and time again I would tell them, I'm only depressed beacuse nobody knows what is wrong with me and now my life has been taken over by something even the doctors don't understand. I had to drop out of school and study from home, sell my horse (which was my passion and activity for years...not to mention a very understanding friend), give up on many social activities etc.
Interesting that you also have a heart condition. For three years as a pre-teen I was seen by a pediatric cardiologist because I often got really bad palpatations. They thought this was SVT and I had lots of tests done, but nothing ever came of it. Since I went on Verapamil they have disappeared, although the other pains have not.
I understand what it is like to have a "hodgepodge" of conditions. I'm here and in the area! Anytime you need me!
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Well, isn't that the thing about people like us? We hope, against all logic, against all experience...
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #27 on: Oct 4th, 2007, 2:48pm » |
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Hey R  Thanks for the note!
I know I'm taking too long to respond to you guys.. I'm just so whiped out from the indo. I'll write soon when I don't feel as dopey.
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Rosybabe
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Re: I feel like I found my long-lost family ;) HEL
« Reply #28 on: Oct 5th, 2007, 10:07pm » |
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Take care of yourself Mikella! We are not going anywhere we will be here when you get back.
Pain free wishes for you Girl!
Rosy.
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Ctech
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Re: I feel like I found my long-lost family ;) HEL
« Reply #29 on: Oct 6th, 2007, 2:58am » |
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Doctors suck (sounds repetitive  )
You will get better advice here - welcome home.
-Chris (your local doc basher  )
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Emily
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Re: I feel like I found my long-lost family ;) HEL
« Reply #30 on: Oct 8th, 2007, 10:33am » |
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Hi,
The indo can be a little tricky to get used to! I still get funny feelings now with - not nearly as bad, but still not pleasant. Try eating more than you normally would over over about 30 - 40 mins and take the indo about 10 mins into your meal. This has seemed to help me.
Also a bonus if you have a sweet tooth like me - I am eating the same amount for my meals, but adding dessert onto the end for all of them! Yum!
Em
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #31 on: Oct 9th, 2007, 8:10pm » |
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Thanks for the notes I can't bring myself to write lately... I'm having a hell of a time. 
Emily - Thanks sweetie! What dose are you on? I really want to get up to 50 mg three times a day.. but I can't stomach it.. every time I take 50, I get nauseous as hell. Yuck. So I've been trying to take 25, 25 then 50 at night, or atleast once throughout the day.... Were you diagnosed with one of the "subtypes" of CH? I'm curious as to why you would be on indo if not. Are you getting any relief from it?? I hope so..... Also, how long have you been on it now? I've been on it.. a week, today. I had some relief on and off........ but when it gets bad, it gets bad..... I wish I could tell if this is going to do the trick or not.. I don't know how long I have to wait. Anti-inflammatories should give relief fairly quickly, if the diagnosis is right.. but I guess whereas I've had this for so long, untreated, it may have a LOT of damage to soothe lol Any info you have about indo,etc.. I'd love to hear.. I wish you the best of luck with all this. Too bad it has to be such a long road to find effective treatment/have it work, etcetcetc. Anyways, tell me your experience! If you'd like, of course Take care!! PF wishes xo
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Emily
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Re: I feel like I found my long-lost family ;) HEL
« Reply #32 on: Oct 10th, 2007, 7:00am » |
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Hello,
Finally you're back on Planet Earth after riding spaceship Indo! Glad to have you back!
I'm not quite sure why I was precribed indo either, and to be honest, other than the side effects, it's not having too much of an impact, but it's only been a few weeks. I can only stomach 2 x 25mg doses a day. Any more than that and I feel really rough. But I'm going to give it a chance. The shadows are still there and I'm still getting hit. I find more relief with ice packs and ice water to be honest. I'm also feeling a little hesitant about upping the dose as I've had more than one warning about long term side effects of indo on your stomach and gut.
Keep me updated and let me know how you feel. I'm giving indo another 2 weeks (my next docs app) and am going to assess then - read back over my HA diary and compare it with the before. If no improvement, then it's on to the next drug!
Keep smiling,
Em
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plungerjoke
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Re: I feel like I found my long-lost family ;) HEL
« Reply #33 on: Oct 11th, 2007, 4:00am » |
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i feel the same way...
i know this is a longshot maybe but does anyone practice meditation as a way of minimizing headache pain?
i have a little bit of experience with mindfulness meditation and find that sometimes it helps to reduce the pain during an attack,
i have never taken medication for attacks.
...other than lots of caffeine
-kurt.
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Emily
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Re: I feel like I found my long-lost family ;) HEL
« Reply #34 on: Oct 11th, 2007, 5:51pm » |
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Never to take away the headache, but I have used meditation with shadows or when I can't sleep (for non-ch related reasons).
The problem is, I'm not focused enough to keep my mind on one thing and it wanders all over the place.
Perhaps you have some tips you could PM me with? I'd be willing to try it for lower KIP hits!
Em
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #35 on: Oct 13th, 2007, 6:01pm » |
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(Breakdown......) Whine whine whine...
I'm in the midst of another total breakdown. I can't handle any more pain. I keep to myself and try to just make it through each day, but I CAN'T any longer. 10 years - I've had my fill. If it was just a few days a month, I would be FINE..... but I don't remember what it feels like to not have pain in my head. My skull feels like it's going to crack right now.
I'm fed up with the indomethacin, it's bullshit, for me anyways. The side-effects are brutal, and while it may help a TINY bit, it's just nowhere near good enough. I just want a day, PAIN FREE. I'm tired of having no life because of this. Many days I'm just out of commission, and physically can't function, many days I make myself because I have to.. so I choose one thing per day (which is.. going to work)......... I can't go out and have fun, and I feel obligated to go to my boyfriend's house most nights.. of course I want to see him, but I'm always in so much f'ing pain that I am NO FUN to be around.
I'm fucking sick of this. I am just so mad and broken down about it all. So many people have no idea what pain is like....... chronic pain takes away your life.... it beats you down physically and emotionally - that's the worst part. I am so depressed that I don't care to even live. I'm on antidepressants.. but I don't think anything will help the way I need it to until I am without pain. I have had serious pain every day of my life since this began..... and before that, I was wearing a full back brace for 2 years, 23 hours a day... so of course that was excruciating as well. I just want a break.
I am so envious of people that don't have to plan their day around their pain. This has completely taken away my life.
I need some help..... could somebody give me all possible advice as to what could help right now?
I have indomethacin, lyrica, magnesium (with calcium and vit d), taurine...........
I can't take kudzu bc of my heart.
Tylenol and ibuprofen have no effect, obviously.
Every time I think I can't get to a lower point, I DO reach a lower point. I just want some pain relief. I want to be able to live my life.
I hope anybody who reads this understands that I don't want to seem selfish, I'm just so fed up......... I'm just in too much pain.
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DennisM1045
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Re: I feel like I found my long-lost family ;) HEL
« Reply #36 on: Oct 14th, 2007, 3:30pm » |
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Hi Mikella,
I just read through this entire thread. Twice. I'm sorry to hear you are in pain. I'm sorry you can't seem to find a Dr that can help. I'm also sorry to say it sounds like you may have a few things going on. While some of your symptoms sound like CH, others just don't.
CH happens to one side of your head at a time. For some people it can switch sides from one cycle to another but never shows up on both sides during a single attack, even at a lower pain level. Someone please correct me if I have this wrong.
Shadows are very different from CH attacks themselves. High Kip level CH attacks are extreme and violent events that come and then completely go within a few hours at the most. Shadows are like the prelude to an attack without the actual attack progressing into a nightmare.
I worry about what treating your condition like CH will do if it turns out not to be CH. So please keep looking for a Dr that can help. In the mean time be careful with what you try on your own. Using over the counter meds can produce exchrutiating rebound headaches. Not to mention what they might do to affect your heart condition. OTC meds are still medications and there are risks.
CH won't kill you. Depression from chronic pain is another matter and I'm afraid I hear that in your writing. I'm so sorry I can't offer more than my observations. I wish I could reach in and take your pain away. But of course I can't. All I can do is to let you know that I hear you and I hope you find answers soon. I know you need them. Please hold on till you find a physician that can help you unravel this mystery. In the mean time. Keep writing and we'll keep reading and offering whatever advise we can.
Peace to you my sister in pain.
-Dennis-
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Emily
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Re: I feel like I found my long-lost family ;) HEL
« Reply #37 on: Oct 14th, 2007, 5:37pm » |
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Hey there,
Just hold on. What will get you through this is the determination to find out what is going on and fix this problem once and for all.
DO NOT LET IT WIN.
Ice packs are a help for me for the shadows and lower KIP attacks, as is sucking on ice cubes. It's got to be worth a shot. Go back to your doc and pester them until they can refer you to someone who knows what they are talking about.
In the meantime, let us know how you're getting on.
You're in my thoughts. Sending you PF wishes across the pond.
Em
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #38 on: Oct 14th, 2007, 6:22pm » |
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Today was a hellish day.. my right eye is all bloodshot and the nerves are messed on that side of my face.. behind my eye & eyebrow, around my maxillary sinus beside my nose.. including the nerves in my teeth on the right side of my mouth. I think the worst is over for now. The indomethacin slowly helped a little after I took it. I hurt.
Dennis, while you have the best of intentions, your post upset me. There is not a single doubt in my mind of my diagnosis, although my case may be atypical. They are not migraines. Everything I have read about CH explains my life to a T for the past 10 years. Chronic CH. I've heard from people that experience the pain on both sides at times. My right side is no question my bad side, but I have pain intermittently on my left as well. I am aware that shadows are not the actual attacks.. shadows are what I have day in and day out, they vary in severity but are always there, a different pain than the attacks.. flare up at the same times it seems... I've experienced countless horrific attacks, my attacks involve the nerves way more than shadows do. My cycles build and build for a few weeks until it reaches the peak, then subside, but I'm always left with shadows, and attacks that build - more often, more intense.. until the worst one of that cycle. Exertion triggers them, the cold triggers them, perfumey scents triggers them.......... I guess if you saw me during my worst "headaches" you would understand. It's frightening. It doesn't even feel right to call them headaches.
It makes perfect sense to me.
I wish this didn't bother me so much, but it does. I am convinced that this is the proper diagnosis, and what I've lived for the past 10 years. Yes, I have been diagnosed with clinical depression, which I'm sure stems a great deal from the chronic pain.. I am on antidepressants. I had pain FAR BEFORE I became clinically depressed. It is NOT the depression causing my pain.
I sense your sincerity in your post, and I appreciate you taking the time to write me, but...... it just made me feel broken down. It wouldn't make sense to me for it to be any other thing.................
I've got 2 specialist appointments this week, and I'll know more about who I'll be seeing.
Anyways, would someone be able to delete this thread for me? Just give me a day to save the replies.. Thank you all, really. I really can't tell you how much I appreciate you all reaching out.
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Charlotte
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Re: I feel like I found my long-lost family ;) HEL
« Reply #39 on: Oct 14th, 2007, 7:47pm » |
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If you want the thread deleted, you would need to contact DJ and discuss it.
If you want to delete your own posts, go to the upper right hand corner and click on "remove".
I'm not sure it is supposed to be deleted. It is part of our history, and we usually keep them.
People have invested a lot of time and energy here, so do you mind if I ask why you want it deleted?
Charlotte
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| « Last Edit: Oct 14th, 2007, 7:58pm by Charlotte » |
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DennisM1045
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Re: I feel like I found my long-lost family ;) HEL
« Reply #40 on: Oct 14th, 2007, 8:59pm » |
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The last thing in the world I would want to do is upset you. There is enough on your plate already. Please do not interpret my comments as demeaning your pain. I didn't use the word migraine at all. I have no idea what you are experiencing. Only you can assess what it feels like to you. I was only trying to decypher your comments and point out that there could be more than one thing going on here. I'm not a Doctor and have nothing but my own experience to speak from and good intentions toward you and your situation. So please take my comments for what they are worth to you. I'm sorry if they upset you. That was not my intention.
I sincerely hope you find the answers you seek and the pain free days and nights you need.
-Dennis-
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MR_FLOOR
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Re: I feel like I found my long-lost family ;) HEL
« Reply #41 on: Oct 14th, 2007, 9:03pm » |
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As you know none of these good folks are doctors,but the advice given here is almost as good as you would get from most doctors. There isn't much to add to this great advice.
But with your heart condition I'm guessing Imitrex is going to be out of the question so O2 is probably going to be your best abortive available to you,don't forget to try energy drinks Red Bull,Monster ect. Anything with the combination of
Taurine and Caffeine in it,remember you have to slam it down as fast as you can at the first hint of a hit. Good luck at the doctor I hope you get what you need.
Dave
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Wayne
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Re: I feel like I found my long-lost family ;) HEL
« Reply #42 on: Oct 15th, 2007, 10:03am » |
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Hi Mikella
I cannot stress enough what Dave just said. A lot of folk have mentioned the Redbull solution. You said earlier that you were worried about taking stimulants because of sleeping. I really cannot urge you enough to try it, I know it sounds daft but really it works for me. I figure its much better not sleeping because you're a bit wired than not sleeping because youre in agony. Don't mess around with Taurine supplements at this stage, some folk have tried with limited success but you don't want to be experimenting now hey.
Please give it a bash, two tins down the hatch double quick time. If it works you'r out of prison free, if not you've lost nothing.
Thoughts are with you, you will win this battle!!
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #43 on: Oct 15th, 2007, 10:38am » |
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Dennis - It's ok, I guess I just wasn't in the mood to read that someone doubts the diagnosis.. I know you had nothing but good intentions, and it was nice of you to take the time to write me, your post was thoughtful. It's just been such a long road so far, and now that we're convinced we know what it is, I want "that to be that". I'm too sensitive, I'm sorry.
Charlotte - I just feel weird about spilling my guts in here, that's all.
My right eye still looks like shit.. I had a bit of relief last night, but this morning is worse again.
Something I don't think I mentioned.. My mother is a pharmacist and does all my stuff, so she went back and printed out a list of all my prescriptions over the years and the meds I've been on...... and it's so interesting, bc it literally documents all this perfectly beginning over 10 years ago.. occipital neuralgia - my right eye, sinus infections repeatedly (many were actual infections, many were not), torticollis, chronic "migraines".. it explains the state of my right eye over the years, too.. I was treated for "eye infections" in my right eye numerous times.
I'm anxious to go to my appointments this week. I'm trying to be hopeful; I want nothing more than to find a treatment that really works for me so I can get my life back.
Getting worse as I sit here.. off to get some ice.
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CostaRicaKris
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Re: I feel like I found my long-lost family ;) HEL
« Reply #44 on: Oct 15th, 2007, 1:04pm » |
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on Oct 15th, 2007, 10:38am, Mikella wrote:
Charlotte - I just feel weird about spilling my guts in here, that's all.
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Mikella,
No one is judging you. Feel free to spill your guts. There are good people here who understand and want to help.
~Kris
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #45 on: Oct 15th, 2007, 4:27pm » |
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Wayne - Thank you I will give redbull a try. I bought taurine bc that is one of the ingredients in redbull.. I've tried the taurine a couple times, I think it does relieve the pain a TINY BIT, but not for long. I guess I'll only use it if I'm desperate. I'm going to go pick up some redbull tonight.
Kris - Thanks for the reminder.. I needed to hear that. <3
SO......................... I had an appointment today....... I FEEL SO RELIEVED. He was wonderful with me, and we are on the right track! I'm starting topamax tonight.. starting on a reaaally low dose and upping it slowly, so I can avoid the rash and maybe not be so... stupid? lol I'm also going to continue with the indomethacin when I need it.. but he prescribed suppositories instead.. WOOHOO  He said that way, it bypasses my stomach and won't cause nausea, etc.. AND, it's not much use taking certain pills orally for "instant-ish" headache relief anyways because during a headache, your stomach slows down incredibly. Interesting.
I'm in pain, but I am RELIEVED. I REALLY hope that this drug will give me some relief.............
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CostaRicaKris
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Re: I feel like I found my long-lost family ;) HEL
« Reply #46 on: Oct 15th, 2007, 9:47pm » |
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Topamax has worked for me. I started at 25 mg and went up every 3 days until I reached 100 a day. It's a low dose, but it seems to be all I need. The side effects really haven't bothered me too much. Diet Coke tastes horrible, tingle in my hands, toes and heels, a bit forgetful, I think it's affecting my running but the jury is still out on that one. They are all things I can live with especially compared to CH. I really hope it works for you!!!
~Kris
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Wayne
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Re: I feel like I found my long-lost family ;) HEL
« Reply #47 on: Oct 16th, 2007, 1:46am » |
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Ok that's grand, seems as if you're on track now! Best of luck!!
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DennisM1045
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Re: I feel like I found my long-lost family ;) HEL
« Reply #48 on: Oct 16th, 2007, 10:24am » |
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Sounds like you finally found a good Doctor! I'm very happy for you. Let's hope Topamax is your magic bullet.
Here's to many PFDAN for ya...
-Dennis-
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Wayne
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Re: I feel like I found my long-lost family ;) HEL
« Reply #49 on: Oct 16th, 2007, 11:16am » |
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So I am itching to hear how it's going with you, Its to early for the Topo to have had much effect but did you try a Redbull,did the new trick with the Indo work????
BTW, with Topomax you might want to invest in a notebook and pen that you carry around your neck, you're apt to become ever so slightly scatterbrained, which is a small price to pay for PF days.
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