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Topic: I feel like I found my long-lost family ;) HELLO (Read 4010 times) |
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Mikella
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I feel like I found my long-lost family ;) HELLO
« on: Sep 30th, 2007, 5:59pm » |
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I am elated to have found this site............. I don't know a single one of you personally, yet I feel as if I have a hundred new best friends.. (or however many people post here  ). I'm not feeling very good right now.. (SURPRISE lol), but I just had to write. I'll be back to tell my story.. which probably isn't the typical story. Basically, I'm a chronic sufferer, I'm 22 years old (in a few months), and I've suffered for 10 years..... and didn't know what exactly it was until literally a few days ago. Cluster headaches have absolutely ravaged my life. And I tried over and over and over and over to have doctors take me seriously and actually LOOK INTO what was going on.. to no avail. The neurologist I saw on Sept. 25 (just last week) was a condescending prick that looked at me in disbelief the whole time.. I was in his office for not much more than 10 minutes, he basically said there was nothing wrong, it was my state of mind that was causing them, prescribed me topomax and shooed me out the door. It was an ENT a few days later that began to figure things out (again just last week).... I've been thinking all these years "GEEZ I must have major sinus problems for them to be causing me this amount of pain all the time when I get blocked up.............".. and then he told me that my sinuses, while they looked like they've been through a battle, were PERFECTLY fine.. and shouldn't cause me any trouble. I went home and researched and researched what he had mentioned ("cluster headaches"... called him a few hours later, he called me back in 5 minutes, and we were on the same page. I was AMAZED.... EVERY THING I read about it.... it was me. It described me to a T..... chronic cluster headaches. I've figured EVERYTHING out, basically I have continuous cycle after cycle, that last about a month.. so it builds and builds over about 3 weeks, I hit my peak, then it GRADUALLY decreases.... then it builds again, etc. Because I've dealt with this for so long, before knowing what it was, I was so used to the pain and the off-the-wall experiences with the types of pain and physical things that would happen, etc.... that it was just PART OF MY LIFE. Now that I know exactly what it is, I realize when things are happening... and every time, it makes more and more sense. When I would hit my "peak", I would lose my mind, every time.... it's, as you all know, NOT something you can EVER get used to. None of this pain, have I ever been able to get used to..... I just didn't think much of it, if that makes sense.. it was never anything new. I don't know what it is like to have a normal feeling head...... my head is always... 24/7, in pain. So anyways.. when I would hit my peak, I would literally feel like I was going insane.......... every time. No amount of medication would help (which now also makes sense). I would thrash and pull my hair and scream if I was alone, and cry, and pound my head.... and think to myself, "why do I have to live like this?"................................. "Nobody else experiences this. I CANNOT go on like this........" ..And now I know. That there are too many other people out there that suffer just like me. I admire each and every one of you, and I look so forward to getting to know you. I just cried when I started reading your posts........ and looking at the pictures of you...... Anyways, so much for waiting to tell my story. This isn't the half of it though. The rest I'm sure will come out soon lol There's another twist because I have a heart condition..... so I'm unsure where we will go in terms of treatment. I cannot tell you all how.. shocked, uncomfortable, happy, scared, anxious.. EVERYTHING.. I feel finding out what has been wrong with me and ruined my life for 10 years. And on top of that, knowing that there are indeed others like me.
So... I'm Mikella, and it's a pleasure to meet you.
"Know how sublime a thing it is.. to suffer and be strong" HWL
..Remember that. Love to you all. & as you perfectly put it: "PF wishes"..
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| « Last Edit: Sep 30th, 2007, 6:01pm by Mikella » |
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"Know how sublime a thing it is.. to suffer and be strong" HWL
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Groov
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Re: I feel like I found my long-lost family ;) HEL
« Reply #1 on: Sep 30th, 2007, 6:25pm » |
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Well then....WELCOME Mikella !!!!
You have come to the right place. I was only diagnosed about a month or two ago and already the good people here have got me squared away.
The people here will (from experience) be able to point you in the right direction no matter what your question or concern.
Welcome aboard the "pain train" 
Cheers, Dave
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Ray
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Re: I feel like I found my long-lost family ;) HEL
« Reply #2 on: Sep 30th, 2007, 7:02pm » |
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Welcome to Clusterville, Mikella. I'm so sorry that you have cluster headaches, but they are treatable, and in many cases preventable. Please explore the links to the left, particularly the "oxygen info". The OUCH website has some patient recommended doctors, perhaps even in your area.
Wishing you PF days and nights,
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
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Rosybabe
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Re: I feel like I found my long-lost family ;) HEL
« Reply #3 on: Sep 30th, 2007, 8:11pm » |
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Welcome HOME Mikella!
Glad you found us, no so happy for the reasons, but are here and we love it  .
Tell us what you are taking,,
Have you tried Oxygen?
There is also Red Bull and Melatonin for night hits until you get a proper Rx from a good Doctor...
one more thing ...nice to meet you too
Wishing you lots and lots of pain free time!!
Rosy.
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CostaRicaKris
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Re: I feel like I found my long-lost family ;) HEL
« Reply #4 on: Sep 30th, 2007, 10:38pm » |
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You are not alone!
I know what it's like to have Dr.s treat you like you are nuts, or like you just want drugs (the last thing we want especially since most of them don't work.) I feel like I found a home here too. It's so wonderful to be able to communicate with others that truly understand the pain and he fear that we all know too well.
~Kris
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George_J
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Re: I feel like I found my long-lost family ;) HEL
« Reply #5 on: Oct 1st, 2007, 2:21am » |
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on Sep 30th, 2007, 5:59pm, Mikella wrote: When I would hit my "peak", I would lose my mind, every time.... it's, as you all know, NOT something you can EVER get used to.
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No, it isn't.
If there's any one truth about clusters--it's this. You can learn to live with it, learn to control your reactions to it, shape your attitudes toward it, but the pain of CH is not something you can ever get used to. That's not possible. The only thing that gets easier, really, is that you know it will end--and you'll survive it.
I have a friend who recently recovered from shingles that affected the trigeminal nerve. He told me later that if the nerve pain that he felt was even a hint of what I've seen over the past forty years of episodic CH, he can't understand why I'm still alive.
Sometimes, neither can I. Just stubborn, I guess.
Best wishes, Mikella, and warm 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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Annette
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Re: I feel like I found my long-lost family ;) HEL
« Reply #6 on: Oct 1st, 2007, 6:39am » |
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Welcome home Mikella,
Nice to meet you and painfree wishes. I hope you will find the med combos that will work well for you soon.
Annette
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barry_sword
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Re: I feel like I found my long-lost family ;) HEL
« Reply #7 on: Oct 1st, 2007, 7:17am » |
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Welcome Mikella, you are not alone anymore. I remember the "I am all alone with this pain" feeling all to well.
Any thought of o2? It works for most folks here as a abortive if caught at the first sign of an attack.
Read lots here and let us know how you are making out. You are with your new family now.
Barry
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Omer
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Re: I feel like I found my long-lost family ;) HEL
« Reply #8 on: Oct 1st, 2007, 9:57am » |
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Welcome home Mikella,
after a month or so, I can say that the things you might read, see or hear in this forum will never come to you from a doctor point of view, they just can't understand the intensity of those pains.
Hope to hear from you some more soon...
Omer
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #9 on: Oct 1st, 2007, 10:54am » |
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Thanks for the wonderful welcome  I can tell I'll be spending a lot of time here - you all are fantastic.
It's nice to feel like I just don't have to explain anything...... I know you all understand. I'm sure I'll talk more about my story sometime, but for now I have QUESTIONS!
#1 Tomorrow, I have an appointment with my doctor, and I'm going to ask to be prescribed oxygen. Can you tell me what exactly to ask for? I have to research about oxygen to understand the terms, etc...
#2 Whereas I have chronic ch's, I have pain in my head 24/7... If I were to use the oxygen every day, could it help? (Rather than ONLY when the pain elevates)..? From what I understand, you call them "shadow" headaches here (?)
#3 I'm going to be hearing back from the ENT I saw last week, TOMORROW. I am scared shitless that he will say that when he spoke to the neurologist, the neur said that he would not diagnose me, and that it's in my head, and not work with me............ What do I do? I keep telling myself that if that is the case, as long as I can start some sort of treatment, that is all that matters.. and I will eventually get in to see a better neurologist that isn't such a douche. I was literally in his office for about 10 mins............ and he looked at me like I was stupid the whole time. Obviously he's never experienced any sort of pain like this.. I hope he never passes by another person like me. Actually, I hope he breaks a leg, too. Am I ever going to give him a piece of my mind.... (after I find out whether he'll see me again or not )... even if he says he will see me again, I will be set up to see a new neurologist as well.. because I really don't wish to deal with him. If he used his BRAIN, he would have EASILY figured this out......... he just had to work with me a bit. How was I supposed to know what to tell him? I didn't KNOW what I "had".......
Anyways........
#4 What can I do to help the DAILY pain? I've read that redbull (specifically, an ingredient in it) helps. I don't want to load myself up on stimulants though, as I have huge problems sleeping.. (which I actually thought was CAUSING my excruciating pain.... but I guess it's mostly the other way around). So, I've read you can take taurine in supplement form.. are there any side-effects? What dose should I start at? Where can I get it?
#5 What other supplements could potentially help? I read about melatonin as well, could you tell me some about that?
#6 As far as meds go, I'm not sure what I will be on.. because of my heart. I'll update tomorrow and let you know what the ENT says about his talk with the neurologist.
#7 Do any of you have neck problems? I've had severe neck problems that I've been treated for many times.. and I'm curious to know whether they are related to the beast (perfect term). Or not... (because I have scoliosis as well).
#8 I don't have insurance right now, since I'm not in school.......... Is "cluster headaches" considered a disability? I'm also on other meds.. for my depression, my heart, and my ADHD.......... now that I'll be on more meds.... it's going to be yet again more expensive...
#9 Do you have any advice for me? About things to avoid doing, etc? Scents have a HUGE impact on me, temperature, etc..
Well, I'll end there for now.... I realize that these are things I'll find out with more reading, but I have to admit I'm pretty overwhelmed right now, and just want some answers..... You guys really are the experts. Don't worry about answering everything But anything you can tell me will be greatly appreciated. I will do ANYTHING to get the ball rolling here and hopefully decrease my pain..
Many thanks and PF wishes to you all. I hope you're doing ok today. Talk soon 
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George_J
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Re: I feel like I found my long-lost family ;) HEL
« Reply #10 on: Oct 1st, 2007, 11:40am » |
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on Oct 1st, 2007, 10:54am, Mikella wrote:
#1 Tomorrow, I have an appointment with my doctor, and I'm going to ask to be prescribed oxygen. Can you tell me what exactly to ask for? I have to research about oxygen to understand the terms, etc...
See: http://www.ouch-us.org/medications/oxygen/o2links.htm
...and be sure to download the pdf "User's Guide" at the bottom of the page. It will answer most if not all of your questions.
#3 I'm going to be hearing back from the ENT I saw last week, TOMORROW. I am scared shitless that he will say that when he spoke to the neurologist, the neur said that he would not diagnose me, and that it's in my head, and not work with me............ What do I do? I keep telling myself that if that is the case, as long as I can start some sort of treatment, that is all that matters.. and I will eventually get in to see a better neurologist that isn't such a douche. I was literally in his office for about 10 mins............ and he looked at me like I was stupid the whole time. Obviously he's never experienced any sort of pain like this.. I hope he never passes by another person like me. Actually, I hope he breaks a leg, too. Am I ever going to give him a piece of my mind.... (after I find out whether he'll see me again or not )... even if he says he will see me again, I will be set up to see a new neurologist as well.. because I really don't wish to deal with him. If he used his BRAIN, he would have EASILY figured this out......... he just had to work with me a bit. How was I supposed to know what to tell him? I didn't KNOW what I "had".......
Ask the ENT for a referral to a different neuro, if necessary. Sometimes the best and only thing to do is move on. World's full of docs--some are helpful, and some are not. Stick around here long enough, and you'll see that most of us have heard all kinds of crap from doctors. One of my favorites from my early days was when an opthalmologist told me that it was caused by weak muscles around my eyes--he gave me a drawn-out regimen of "eye exercises" that would supposedly strengthen them. Needless to say, it was useless.
#5 What other supplements could potentially help? I read about melatonin as well, could you tell me some about that?
Melatonin supplements normally come in 3 mg. tablets. They are available over-the-counter in the US. See the latest edition of the OUCH newsletter for more information. http://www.ouch-us.org/newsletters/newsletters.shtml Many of us take 6 to 12 mg. before going to bed--it is helpful to some of us who get hit at night, normally in the REM stage of sleep. My personal experience is that it reduces the number of nighttime attacks that I get.
#7 Do any of you have neck problems? I've had severe neck problems that I've been treated for many times.. and I'm curious to know whether they are related to the beast (perfect term). Or not... (because I have scoliosis as well).
Some of your "neck problems" may be what we call "cluster lumps"--inflamed and swollen nerve ganglions and surrounding tissue in the back of the neck that become more pronounced during an attack. Some of us get them, and some of us don't. They show up on the cluster side--often at the base of the skull, or near C5, or--in my case--near T1/C7 at the base of the neck where it meets the shoulder. Some people get them on the roof of the mouth, or the cheek.
#9 Do you have any advice for me? About things to avoid doing, etc? Scents have a HUGE impact on me, temperature, etc..
Scents are not a trigger for me, but others report that they are very significant. The best advice I've ever seen here is simply this--don't live your life in fear of CH. One day at a time, one hit at a time. Get hit--live anyway.
Best wishes,
George
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| « Last Edit: Oct 1st, 2007, 11:42am by George_J » |
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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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Rosybabe
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Re: I feel like I found my long-lost family ;) HEL
« Reply #11 on: Oct 1st, 2007, 4:31pm » |
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Just adding to what George already told you..
avoid alcohol and smoke, they are normally triggers for most of us...
if you don't have insurance there is always welders Oxygen...
there are also alternative medicines you can use that are over the counter and fairly cheap like Kudzu..there is a thread about Kudzu and its benefits in the specific board. You can also get information here..
http://www.clusterbusters.com/
Good Luck Mikella and don't be afraid to ask what you need to the Doctor, he is there to listen to you , demand it if necessary .
HUgs and PF wishes to you..
Rosy.
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PollyPocket
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Re: I feel like I found my long-lost family ;) HEL
« Reply #12 on: Oct 1st, 2007, 6:54pm » |
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HI Mikella! Gather as info as you can from here, 02 info etc, and take it with you to the doc. Also a HA diary is a good thing because your doc/neuro can then SEE the pattern, not just take your word for it.
Another good daily weapon is ice packs for the affected side (a long standing joke here is that peas are our best friend- the frozen bagged kind, that is! makes a handy ice pack in a pinch)
We've all been where you're at and nope, you're not alone hon. Not any more. Welcome to the family.
PM me anytime you wanna just chat.
Hugs,
Jen
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| « Last Edit: Oct 1st, 2007, 6:57pm by PollyPocket » |
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
"If I don't remember it happening, it never happened. " - Tori
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CostaRicaKris
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Re: I feel like I found my long-lost family ;) HEL
« Reply #13 on: Oct 2nd, 2007, 12:51am » |
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I think a lot of us (if not all of us) have been through the misdiagnosis "it's just a sinus infection" and/or doctors treating us like we're nuts. I had my first episode in 2001 and I was just diagnosed by my GM with CH last week. I see the neurologist tomorrow and hopefully can get the green light on the O2.
Hang in there, you are not alone.
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #14 on: Oct 2nd, 2007, 3:50am » |
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It's after 4 a.m. and of course I can't sleep..... The beast is banging on the right side of my head, and this is ALL I can think about.......... I keep realizing more and more. I thought my earliest memories of this was age 10 or 12........... but I now know that it was FAR before then. I remember the excruciating pain that scents and the cold would cause me...... within seconds of being outside, my eyes would be STREAMING down my face, and my nose completely blocked..... and of course the accompanying horrific pain.
George: First, thank you for your reply. What you said applies perfectly to me.......... this explains the horrified reactions massage therapists and physiotherapists had when dealing with me when it came to my neck.... to the point where I was told several times to have it x-rayed before they would touch me again. I have various huge BULGES around my neck in different places.. it varies.. but they are always there and extremely painful. Also, on my scalp. My neck has been seized to the point of absolutely NO movement countless times, and the pain is just out of this world. This would also explain why I get bad pain over the roof of my mouth, and have been to the doctor about that and been given antibiotics LOL Thanks for explaining that a bit, it makes so much sense.... And as for your piece of advice: when I first read what you wrote, I have to admit I thought "well, I can't just LIVE ANYWAYS, this cripples me day in and day out.. I don't just get "hit" here and there.." (my pain is continuous between massive hits)........ but I sat and thought, and it just made me more determined to take my life back.. There is a way I can treat this..... and until then, I'll continue to fight the beast just like I always have. I've made it this far without "ending it all".. So thank you. I will live anyways, just as I always have, and that's what I need to do right now. It almost makes it worse knowing that I will hopefully find meds I can take to help....... I've gone my whole life thus far without treatment, trying desperately to medicate myself with pain killers to no avail (now I know why)... and now that I know what it is, I want HELP! I want treatment. Problem is, I can't take calcium channel blockers because of my heart condition, and I can't take abortives because of my heart meds.  Just saying that makes me cry inside.. but I hope there IS hope for me. I think we are all so much stronger than we give ourselves credit for. I hope I can return the support and offer something to this site when I'm "squared away"
Rosy: Thank you as well! I will definitely avoid smoke and alcohol. As far as I know, I can't take kudzu because of my heart (whereas it acts like the preventatives).. but I will continue to research.
Polly: You're sweet, thanks for the helpful advice. And I'll take you up on that offer sometime!
Kris: Wishing you all the best, I'm hoping to get my oxygen tomorrow, too. Let me know how it goes for you.
It's now 4:50 a.m., I wish I could just sleep like a normal person..... 
Could someone tell me...... are all preventatives calcium-channel blockers? As far as I know, I don't have ANY options meds-wise................ and the more I think about it, the more it scares me. There is NO WAY I'll live my whole life like this. I will try my best to be patient, but only if I know that there is something that can help.
Ugh....................... oh, the ups and downs. 
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"Know how sublime a thing it is.. to suffer and be strong" HWL
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phil_h
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Re: I feel like I found my long-lost family ;) HEL
« Reply #15 on: Oct 2nd, 2007, 4:21am » |
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Hello Mikella , Welcome aboard...... This morning I've been handling the banging on the left side .... It never gets old, just more routine and treatments and techniques improve , mainly through trial and error.... For me this am , it's been o2 , ice packs and red bull.... I've had 3 hits since 12:30. 8,8 and 7.... The sooner I hit the o2, the sooner relief comes. These last 3 hits lasted 30, 15 and 40 minutes . The o2 failed to abort last hit ..... This is so much better than when I arrived here . The advise and support here will help you move from merely surviving to living again........ hang in there , get an MD that is teachable and never give up. Wishing you pfdan's..... Right now I'll hit a cold shower to get the swelling down in my eye........... These bad patches of hits tend to come and go for me ; however I get 3-4 hits daily.....they have reduced to the more liveable 4-6's................. This is better than last year.... Welcome again.... phil h
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Angels are among us ........beasts beware !!!!!!
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George_J
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Re: I feel like I found my long-lost family ;) HEL
« Reply #16 on: Oct 2nd, 2007, 11:21am » |
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on Oct 2nd, 2007, 3:50am, Mikella wrote:
Could someone tell me...... are all preventatives calcium-channel blockers? As far as I know, I don't have ANY options meds-wise................ |
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Guiseppi--Jonny--could you please add to this thread regarding lithium as a preventive?
I don't take it myself, but I know that it has been very successful for them. I believe there are other options and approaches that don't involve calcium channel blockers. Bob Johnson may have some information to contribute as well.
Best wishes,
George
Edited to add: It may be possible that you have more than one headache type going on, given your report of continuous pain between massive hits. There are a number of people on this board who get migraines, CPH, or Hemicrania Continua as well as CH. You'll need a good neuro who specializes in headache to try and sort it out. Different headache types require different medications.
It's all about getting your life back--and fighting to do so. You may have to go through any number of doctors before that happens, but it CAN happen. Never give up--never give in. We're here for you, and will try to help in any way we can.
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| « Last Edit: Oct 2nd, 2007, 11:32am by George_J » |
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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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E-Double
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Re: I feel like I found my long-lost family ;) HEL
« Reply #17 on: Oct 2nd, 2007, 2:55pm » |
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If you are not on any meds here are Some tricks that I used to use and sometimes still do:
*Wrapping a bandana tightly around my skull (be careful)
*Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering
it.
*Going from Steam to Frigid shower.
*Standing infront of A/C
*Icepacks or frozen veggies on the back of the neck or eye
*Tons of STRONG coffee.
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and the cycle had been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
If not some people find Benadryl effective.
As far as meds go....
This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.plainboard.com/ch/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have also used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
Hang in there my new friend!!!
Eric
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| « Last Edit: Oct 2nd, 2007, 2:57pm by E-Double » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #18 on: Oct 2nd, 2007, 3:12pm » |
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You all are angels...................... Is anybody online? I'll check the chat............... I just got back from my doctor's appointment, and I had a TOTAL breakdown.. even in front of him. He was rude, he was mean, he made me feel like the scum of the earth and would NOT prescribe me oxygen......... I sat in my car for an hour and a half and bawled. I just can't find a good doctor......... He even made remarks about how "I come in there with a little printout from the internet"....... IT WAS SOMETHING SOMEONE ON HERE RECOMMENDED TO ME.. WRITTEN BY A NEURO....... ABOUT OXYGEN. And I didn't even show it to him bc I knew he wouldn't have it........ So how the fuck did he even know what it was? He was on a mission, to be an not a very nice person......... he was looking for any reason. I was very patient, explained things to him, but he KNEW I was livid and frustrated............... I asked him if he had worked with anybody before with CH, and he said "uh YEAH.." and I was thinking to myself... "well, if you've never heard of using oxygen as a treatment, then OBVIOUSLY you've had little experience with CH"....................... I am never stepping foot back in that building. He even had the nerve to say how I was taking up his other patients' time.............. so I got up and asked for a kleenex and left. I'd like to shoot him. I told him that if he experienced this for 10 years thus far, HE would be frustrated, too.................. I asked him what the harm was in prescribing me oxygen......... and he just wouldn't have it........ he kept saying "I will NOT prescribe you oxygen". I'll never forget the things he said to me............ "Well, if you've had this for ten years, you can deal with it for a bit longer"........ No, I can't. Omg I want to just poke his eye out and see how he likes it.. (that's tame).
I'm just so........ devastated by EVERYTHING. I'm beside myself. I'm so tired of dealing with doctors who deserve to die painful painful painful deaths. I'm just so MAD...................
I swear I'm a nice person.........................  I just hate the world right now.... I just want this to stop.
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| « Last Edit: Oct 2nd, 2007, 3:14pm by Mikella » |
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"Know how sublime a thing it is.. to suffer and be strong" HWL
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George_J
CH.com Alumnus
New Board Hall of Famer
White-Breasted Nuthatch
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Re: I feel like I found my long-lost family ;) HEL
« Reply #19 on: Oct 2nd, 2007, 3:30pm » |
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Time for another doc.
If it walks like a duck, and it talks like a duck, I don't care what sort of diplomas it has on the wall--it's a quack.
Somewhere along the way, some ducks (oops...docs) have forgotten that they're working for YOU, and getting paid by YOU to provide a service. They're not put here to act like little tinhorn gods to lord it over the lowly sheep. I've seen it before--as most of us have.
You don't have to stand for it, but you don't have to turn it into a fight, either--which won't help. Smile, nod, and blow it off. Time to move along.
Best wishes,
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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Mikella
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I love YaBB 1G - SP1!
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Re: I feel like I found my long-lost family ;) HEL
« Reply #20 on: Oct 2nd, 2007, 3:49pm » |
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Thanks, George....
(I didn't fight with him, just for the record).. lol
He's certainly a duck. A duck I'd like to shoot. LOL I will get over it............ he's the 5th doctor I've gone through though..... the one good one I found ended up having health problems herself and hasn't been working for like 8 months..
I need to find a new doctor's office. But as we know, doctors are hard to find. Let alone good ones..
Atleast I have the ENT on my side..
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"Know how sublime a thing it is.. to suffer and be strong" HWL
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Rosybabe
CH.com Alumnus
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"Too much of a good thing can be wonderful!!
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Re: I feel like I found my long-lost family ;) HEL
« Reply #21 on: Oct 2nd, 2007, 5:04pm » |
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Any Canadians around???!!!
Mikella needs help with a good Doctor referal!!
Please come help over here!!!
Thanks!
Rosy.
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Believing is just the beginning!
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CostaRicaKris
New Board Veteran
Currently training for AFC half Marathon
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Re: I feel like I found my long-lost family ;) HEL
« Reply #22 on: Oct 3rd, 2007, 1:25am » |
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I'm so sorry - As I've said before, I know what it's like to be treated like you're nuts! Aaurgh! All you wanted was O2, not like you’re after heavy-duty painkillers!
I saw nuero today too - I have to go back again tomorrow - I'm hoping for some O2 as well since my attacks hit around 1am and keep me up all night. I'm on prednisone right now, but that will run out tomorrow - hope to get some O2 soon.
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Visit my website: http://www.active.com/donate/amnhealthcare/KristinaMorris to learn more about Girls on the Run, a non-profit prevention program that encourages preteen girls to develop self-respect and healthy lifestyles through running
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Mikella
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I love YaBB 1G - SP1!
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Re: I feel like I found my long-lost family ;) HEL
« Reply #23 on: Oct 3rd, 2007, 11:07am » |
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I appreciate each and every reply..... they're keeping me going!
Every since crying all yesterday, my head has been in awwwful pain..... anybody else find that? It makes it SO much worse for me, but I'm sure other people find that too. The ENT called me, and of course I couldn't even hold myself together on the phone to him... this was when I was still in my car, an hour and a half after my appt., bawling lol.. I sound so pathetic. Anyways, he phoned in a prescription for indomethacin for me.......... He read all he could over the weekend, to learn.. and so did I.. and he wants to try this to see if it is CPH. To be honest, I have a feeling it will work... some of my problems sound a lot like CPH..... my pain increases with exertion, I have huge problems with my neck (bulges everywhere that are extremely painful, I seize up to the point of absolutely no movement (this has happened many times, NO luck with muscle relaxants only antiinflammatories which were never tried until this last time..), spasms, my neck catches when I move, then it seizes, blahblah), I get nauseous when it gets really bad, my head throbs with movement............ Anyways, I'm not going to get my hopes up.....
I've been reading everything I can get my hands on, and I can't seem to find good information that really explains the difference between CPH and HC. I'm not confident in my understanding of the two. My head is difficult to figure out LOL And it's hard for me to explain, because over the 10 years, I've experienced it all (it seems as I have).
This is how I feel right now:
A constant, very tight pressure/drilling pain on the back of my head
My neck is all tight, especially right at the base of my skull
Sharp constant "nerve" sort of pain beneath my right eyebrow and behind my eye
On and off, a pain in the back of my head as if you went straight through where my right eye is to the back, this pain is like the pain in the back of my head, more drilling, kind of shoots through my head from the eye to the back
Less severe same pain beneath my left eyebrow and eye
My nose is dripping, feels constricted when I breathe and I have this constant tingley sore pressure where my nose is
Both eyes are bloodshot, not bad now.. right one was worse yesterday.. they've been way worse (usually one at a time)
Various bulges on my neck in different places, it hurts to touch my jaw under my ears and down
The difference that really gets me... is... while the pain will always be WORSE on one side (the nerve pain), it will happen on the other side as well.. like it just has to remind me that it's also there on the other side 
My "bad" side is definitely my right side, but I do feel the nerve pain on my left side on and off briefly even when it's my right that's affected. From what I can remember, the nerve pain always happens on one side at a time.
It's difficult to figure out.................. But I'm trying to consciously think about my pain now.
*****
I wish there was a part of this site for "diaries", where we could just write about what we're dealing with, not necessarily looking for answers.. Sometimes I just have to get it out somewhere, and put things down on screen to help me make sense of it.
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"Know how sublime a thing it is.. to suffer and be strong" HWL
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Emily
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Re: I feel like I found my long-lost family ;) HEL
« Reply #24 on: Oct 3rd, 2007, 5:57pm » |
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Hi Mikella,
I have just been reading this and my heart really goes out to you. I'm feeling your frustration with everything that is going on and I'm sorry that I can't do anything to help you myself, even if it was only to give that god damn doctor a good slap and you a big hug and an ice pack!
I don't live in Canada, but my parents do and my stepmother works for the government as someone who assesses people's insurance claims when they can't work (and is trained as a nurse). They are currently away from home, but I will speak to her as soon as possible to see if I can get a name for you, or a clinic.
My parents live in Ottawa. Whereabouts are you?
Hoping PF days come soon. 
Em
PS - I get shadows almost all the time in between attacks - 2 - 3 times a day, every day. Ice packs have really helped and coffee has helped too. I'm also taking indo. Not sure if it's working or not, but beware. I had a few side effects for the 1st 5 or 6 days. Nausea and dizziness, plus giving the impression to those around me (I was back in work by day 3 of meds) that I was drunk. God knows what my boss thought of me!
Hold in there and know that there is ALWAYS support here for you, no matter what.
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