Yet Another Bulletin Board

Welcome, Guest. Please Login or Register.
Jul 17th, 2019, 12:33am

Home Home Help Help Search Search Members Members Member Map Member Map Login Login Register Register
Clusterheadaches.com Message Board « Leaving the boards and chat for awhile... »


   Clusterheadaches.com Message Board
   New Message Board Archives
   2003 Posts
(Moderator: DJ)
   Leaving the boards and chat for awhile...
« Previous topic | Next topic »
Pages: 1 2  Reply Reply Notify of replies Notify of replies Send Topic Send Topic Print Print
   Author  Topic: Leaving the boards and chat for awhile...  (Read 1694 times)
Lizzie2
CH.com Alumnus
New Board Hall of Famer
USA 
*****




"L'Chaim"~Hebre w Toast~"To Life"

  Lizzie52004  
Email

Gender: female
Posts: 4458
Leaving the boards and chat for awhile...
« on: Dec 23rd, 2003, 8:38pm »
Quote Quote Modify Modify

Hi everyone,
 
I just wanted to post a message to say that I won't be on the message boards or in hsg chat at least until I have met with my neurologist on the 29th...which will be the first time I've been able to meet or speak with him since November 19th.
 
It has come to my attention that some people feel that all I ever do is ask the same questions over and over and that I never follow any advice.  Well, to the people who feel this way, I'm sorry to hear that.  My first post (maybe 2?) genuinely was seeking good treatment suggestions, however posts after that were in an attempt to vent.  A lot of times I don't have the ability to let out my pain around my house because my family does not accept it.  So if I have posted something regarding how I am feeling AT THAT MOMENT...it is generally because I am frustrated that I cannot express how I feel in a house where people do not and cannot understand.
 
Regarding the fact that I have not up and dropped all my meds and gotten prescriptions for O2 and trex.  Well, I do not feel comfortable doing this without my neurologist.  I haven't been able to get into contact with him since my last appointment on the 19th of November.  And this is not for lack of trying.  I did call the office a few times, but responses were always short term courses of steroids.  And then I started having problems because in order to talk to a nurse there, you have to call them, and then wait around all afternoon for someone to call you back.  Well, I have no access to a phone from morning until after the office closes, so I can't do this.  So I emailed my neuro instead.  He sent me an email saying he can't give out medical advice over email and to call the office.  So you know...I have tried.  There is nothing I can do about this until I see him at the start of my hospital admit on the 29th of December.
 
And the fact that I am on so many meds (which no, I don't really agree with) is because of the fact that I also have coexisting new daily persistent headache with migraine for 3 years now.  Sometimes people's headache conditions don't fit neatly into a diagnostic box.  It hasn't been easy fighting an uphill battle with doctors who want to give it this name or that name or treat it with this med and that med.  So, in order for me to continue treating the NDPH plus treat the CH, I would have to stay on some of the meds which treat NDPH...this includes slightly different meds than verapamil, so I will probably always be on more than one med.  I do not like taking a lot of medication, and I would like to work my way down to very few meds if possible, but if it weren't for the help of my former neurologist, I wouldn't even be able to get out of bed today.  So I guess they have helped, at least a little bit.
 
I'm sorry if this email sounds negative.  I knew there were a couple of people who were starting to act not so pleasantly towards me, and then I found out I was being compared to someone who previously posted in a method where they only asked similar questions repeatedly without ever following advice.  I like to think I'm a little bit smarter than this, as I have spent 3 years in headache research and advocacy on my own, and this past summer spent official time volunteering and assisting in headache research where I learned even more by having access to journals, papers, and many more resources about all types of headaches.  I enjoy helping others as much as I can, but sometimes I need a little help too.  For now, I will be looking for that help amongst a few close friends who I have made at school this year.
 
Thanks for listening to me go on and on and on.  I can still be reached via email or via MSN for those of you who have my connection there.  Take care and have a very happy holiday and new year.  PF to all.
~Lizzie (Lizzie2)
IP Logged





Patrick_A
New Board Hall of Famer
USA 
*****



If i could get my hands on that wascally Wabbit

   
Email

Gender: male
Posts: 843
Re: Leaving the boards and chat for awhile...
« Reply #1 on: Dec 23rd, 2003, 8:51pm »
Quote Quote Modify Modify

Hey Liz, Dont over-react! People say a lot of things that could be misconstrued here. This is a family and it is about support for one another, But as in all families, sometimes ya have people who will piss ya off. I've pissed off a few and been pissed off a few times. I still love most of them, and the ones i dont love, well, fuck'em. They dont matter!
Hang around, you'll make a few friends who can relate to you, and before long, you'll be a part of the regular crowd!
 
Wishing you a Merry Christmas, Patrick Smiley
IP Logged

Do you think that when they asked George Washington for his ID, that he just whipped out a One Dollar Bill?
BlueMeanie
Guest

Email

Re: Leaving the boards and chat for awhile...
« Reply #2 on: Dec 23rd, 2003, 9:01pm »
Quote Quote Modify Modify Remove Remove

Lizzie,
 
Please don't worry about anything you have said here. I say LOTS of stupid stuff & ask LOTS of stupid questions. Everyone here vents alot. That's the why this board is here in my opinion. It's what keeps me going. I think we all get mad hearing some responses that suprise us. It's everyones way of venting I think.
 
Also, it seems that because we ALL hurt so much all the time, we get frustrated and take it out on people which I believe is not really the way we are. If that makes since.
 
PFDAN to you. Hurry back !!
IP Logged
Cerberus
New Board Hall of Famer
USA 
*****




Whomever said that two heads are better than one?

   
Email

Gender: male
Posts: 2117
Re: Leaving the boards and chat for awhile...
« Reply #3 on: Dec 23rd, 2003, 9:04pm »
Quote Quote Modify Modify

L2,
 
 I am not one to usually subscribe ot a particular way of thinking. I and many others here use this board regularly to vent, no need to apologise. Do what you think you must, but, remember no matter what we say here on the board........................we are all still concerned with your well being mentally and physically.
 
 Vibes and luck to you, and I hope you have a great holiday.
 
Ramon
IP Logged

I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
thomas
Guest

Email

Re: Leaving the boards and chat for awhile...
« Reply #4 on: Dec 24th, 2003, 8:16am »
Quote Quote Modify Modify Remove Remove

Hell, sometimes I hardly know what in the hell I'm talking about lol.  Don't get discouraged.  I hope you come back after your neuro appt. with a lot of artillery to blast the pain in your head.  PFNAD Smiley
IP Logged
kissmyglass
CH.com Alumnus
New Board Hall of Famer
USA 
*****



Don't Mix Triptans

   
Email

Gender: male
Posts: 1398
Re: Leaving the boards and chat for awhile...
« Reply #5 on: Dec 24th, 2003, 9:10am »
Quote Quote Modify Modify

Jill?
IP Logged

"It does so fucking look like her" - Picasso
[img][/img]
Prense
CH.com Alumnus
New Board Hall of Famer
USA 
*****



Kerry is an idiot!

   
Email

Gender: male
Posts: 1607
Re: Leaving the boards and chat for awhile...
« Reply #6 on: Dec 24th, 2003, 9:11am »
Quote Quote Modify Modify

on Dec 23rd, 2003, 9:04pm, Cerberus wrote:
Do what you think you must, but, remember no matter what we say here on the board........................we are all still concerned with your well being mentally and physically.  

 
Hell yeah!  Don't be soft skinned around here...   Wink  Hang in there L2 and let us know how it goes.
 
Chris
IP Logged

Where does the white go in a snowman when the snow melts?
fubar
CH.com Alumnus
New Board Hall of Famer
USA 
*****





   
Email

Gender: male
Posts: 1933
Re: Leaving the boards and chat for awhile...
« Reply #7 on: Dec 24th, 2003, 1:36pm »
Quote Quote Modify Modify

Lizzie,
 
I have read a lot of your posts, and I'm one of the people who thinks your problem is being perpetuated by your meds.  I'm sorry if that makes this an uncomfortable board for you.  You seem intelligent, and reasonable.  That doesn't mean you're immune to the negative effects of the mountain of medications you're taking.  It doesn't mean you're immune to the effects of addiction.
 
If you want to treat CH, even with your other problems, you have to look at the whole problem.  From my perspective, you're being fed a witches brew of various meds to treat individual symptoms, and aggrivating your condition.  If hearing that from people who care about you is too difficult, then you probably do need to take a break.
 
For someone with so much going on medically, I find it hard to believe you have such limited access to a doctor.  That doesn't compute.  It seems like you're comfortable in your meds haze, and uncomfortable with the idea of change.  Just one man's opinion from the only evidence presented here so far.
 
Oxygen, for example, can't hurt to try.  You could do like many have done here and try this without even a prescription.  Then, you'd either know it was effective or not.  But no... you won't because why?  This I don't get at all.  Is it because Oxygen isn't nearly as much fun as thorozine?
 
Call me harsh.  Call me mean.  Characterize it any way you want, but we're only trying to help you figure this thing out, and if you won't try even the simplest things, of course we're going to get frustrated with you.
 
-Fu
IP Logged

"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
TomM
New Board Hall of Famer
USA 
*****






   
WWW Email

Gender: male
Posts: 2006
Re: Leaving the boards and chat for awhile...
« Reply #8 on: Dec 24th, 2003, 1:43pm »
Quote Quote Modify Modify

Shit, Fu. You nailed it.
IP Logged

"Everyone should believe in something. I believe I'll go fishing."
--Thoreau--
floridian
Guest

Email

Re: Leaving the boards and chat for awhile...
« Reply #9 on: Dec 24th, 2003, 2:22pm »
Quote Quote Modify Modify Remove Remove

Lizzie,
 
You've got as much right as anyone to be here.  People on this board sometime get into disputes and personality things with each other.  If you don't like how its going, you are free to ignore people, verbally bite them back, drop out, or respond however you think is best.  Different people have different ideas about CH - but every one here is trying to help themselves and help others deal with the clusters. Unless you are trying to sell some worthless cure or otherwise rip people off, people here really don't hold a grudge.  This board is a valuable resource, and I would hate to see you (or any one) leave because they felt harrangued.  And if you do decide to take a break, we'll be here when you decide to come back.
IP Logged
Ree
New Board Hall of Famer
USA 
*****




2008's my year to shine~SUN IS OUT!!!YAY

64720087 64720087   Reespirit   Ree16Angel
WWW Email

Gender: female
Posts: 5236
Re: Leaving the boards and chat for awhile...
« Reply #10 on: Dec 24th, 2003, 3:26pm »
Quote Quote Modify Modify

Fu I am really impressed with your post...
 
Lizzie hang in there... be well.  ree
IP Logged

Proud Mom to US ARMY Kiowa OH58 PILOT~CWO2 SCOTT Hawaii, & USMC Vet~Now POLICE OFFICER SEAN, Citizen of the Month~ Breezy~ Nana 4 Matt/Mike&Aya, MIL To Shino Wife to Dave HI BILL!http://www.myspace.com/dungareespockethttp://www.prohawaiian.com
Lizzie2
CH.com Alumnus
New Board Hall of Famer
USA 
*****




"L'Chaim"~Hebre w Toast~"To Life"

  Lizzie52004  
Email

Gender: female
Posts: 4458
Re: Leaving the boards and chat for awhile...
« Reply #11 on: Dec 24th, 2003, 3:45pm »
Quote Quote Modify Modify

HI all,
Thank you so much for supportive messages.  OK to begin, I suppose it wasn't so much responses to posts as it was that I started to notice negative feelings in chat, etc.  And then when I asked someone directly about it, that person (who I won't name) gave me the details on ALL that had been going on...the fact that there were problems in chat and on the boards, and then someone else elaborated further to me today.  There are many PMs going on behind my back, etc.  So, I knew there were problems in chat starting awhile ago.  I didn't even know there were problems here until just recently.  I had gotten very kind responses from many people here, and I had never had hard feelings towards anyone.  
 
I don't mind if you think I'm on too many meds, Fu.  Or if you think I'm rediculous for saying that I can't get ahold of my neuro.  I worked in my neuro's office for 4 months.  Trust me, I know what I'm talking about when I say that I REALLY cannot get ahold of the man.  My former neuro, it used to be ok for me to email him, and then he would call me back almost immediately so we could talk about the problems.  This is not ok with the new neuro.  I had to get a new neuro because my former neuro moved out of the country.  So, the only time I've worked effectively with their office was when I needed a date for hospitalization, and I set the message on my voice mail of my cell phone to ask them the specific date of when I would go in and the nurse responded to that question.  Little bit difficult to leave a myriad of questions that way, though...don't you think?  And a little ineffective to go to my family doctor when he hasn't been the one prescribing the meds and has no idea how to treat my headaches...
 
I did ask an ER physician to give me O2 when I went to the ER at Penn State on November 20.  He said no because it doesn't work.  I told him differently and even gave him details.  He still denied it.  So yeah...I worked on that front.  I don't know anyone in State College who uses O2, but hey if anyone on the message boards lives in rural hell PA and uses O2...let me know!
 
And as for the meds, as I have said I do not want to be on this many.  Thorazine once a week or once every other week or sometimes not at all for months on end is an addiction?  Odd...  The only meds I take for preventives are parnate, verapamil, neurontin, methergine, and topamax.  OK...neurontin...you can stop that without a neuro and immediately without tapering.  Topamax...I don't have the little 25mg step down pills in order to taper, but my neuro and I are planning on stopping it the next time I see him.  Verapamil we are also planning on stopping.  Parnate...I have no clue how to get off this, and it is dangerous as hell to play with on your own.  Methergine...I can stop this one because I already did it once on my own when I couldn't get ahold of anyone in the office the last time (see! it's not just now!) and I just decided what the hell..I'm gonna stop it on my own schedule.  However, since I'm seeing the neuro on MONDAY...I figured it would probably be best to wait until discussing a good plan for ditching them with him until then.
 
As I have said to people more than once...If he doesn't agree to work with me on a plan this hospital stay, then I am leaving to find a new doc.  Plain and simple.  Maybe I just haven't said it to the right people so that people hear me.  I don't know.  But people seem to think I'm a pushover on this!  How do you think I got off the last 25 meds I took???  By telling them I refused to deal with the shit.  But when you can't get in contact, you have to wait a freaking month and a half.  Sometimes that's life.
 
So it's not so much that I have a problem with posts...but that I have a problem with people talking and complaining behind my back.  If you have a problem with me, say it to my face...like fubar.  Thanks fubar...because I don't care if you have a problem with me.  I can actually address it if you say it to me...I can do nothing if you just gossip.  I have more things to address regarding this, but now I have to get ready for church.  Take care and very happy holidays!
~Lizzie
IP Logged





Charlie
CH.com Alumnus
New Board Hall of Famer
USA 
*****




Happy to be here

135447360 135447360   mondocharlie   mondocharlie
Email

Gender: male
Posts: 14968
Re: Leaving the boards and chat for awhile...
« Reply #12 on: Dec 24th, 2003, 4:01pm »
Quote Quote Modify Modify

I’m hoping you stick around. We can help you separate the wheat from the chaff when it comes to dealing with this horror. One doesn’t have to do what we say but we’re pretty sure that our suggestions will do no harm. It makes sense to give us a try though. In any case, the price is right and someone will always be here for you.
 
The frustration level with clusters is high and this sometimes leads to impatience from new members as well as us. Give yourself and us a chance however. It won’t hurt to pay some attention to us when it comes to drugs. Those who have drug experience know what they’re doing. I’ve had epilepsy for 44 years and for the last 20, the goal has been to treat this disease with as few drugs as possible. I think it’s a good idea for you to keep track of things. It just makes sense.
 
I hope you’ll let us know how you’re doing. For a cluster sufferer, I can think of no good reason to avoid this strange, friendly, silly, but damn useful place.
 
Charlie
IP Logged

There is nothing more satisfying than being shot at without result---Winston Churchill
jonny
Guest

Email

Re: Leaving the boards and chat for awhile...
« Reply #13 on: Dec 24th, 2003, 4:39pm »
Quote Quote Modify Modify Remove Remove

on Dec 24th, 2003, 9:10am, kissmyglass wrote:
Jill?

 
Hmmmmmm!!!..............Dunno
 
...................................jonny
IP Logged
fubar
CH.com Alumnus
New Board Hall of Famer
USA 
*****





   
Email

Gender: male
Posts: 1933
Re: Leaving the boards and chat for awhile...
« Reply #14 on: Dec 24th, 2003, 5:14pm »
Quote Quote Modify Modify

Lizzie,
 
I'm not a participant in any background gossip crap... people here know me well enough to know I don't play games like that.  I'll tell you how *I* feel and what *I* observe from your posts, nothing more.  To clarify things, I did not call you an addict.  I said your are not immune to the effects of addiction, big difference.  Anything I say about you, I would apply the same logic to myself.  I want to see you get better, that's all.
 
If you are the type of person who is ready to dismiss your chance at relief because one neuro or ER tech said 'No', then you're in for a long painful ride.  O2 is available through a myriad of sources, and you had one guy say it doesn't work.  You have hundreds of people here saying it works, and telling you how to get it.  Hell, I'd send you a regulator, mask and maybe even an O@ bottle if I thought it was going to get you over the hump on this, but you resign yourself too easily from what you've written so far.
 
I totally understand the things you say about not wanting to change things without talking directly to the doctor, but a lot of doctors aren't even worth talking to!  Are you saying this guy is soooo good that the only things you'll ever do are what this one doctor says?  So now you're limited to act only on advice you can only get in a rare appointment with him?  That's the part I have trouble with.  Find a different doctor.  Find a fire station with O2.  Take control of the meds they are putting in your body.  You are the boss, not them.
 
I stopped all meds cold turkey, and I'm still alive.  I was on Depakote, Lithium, Verapamil, Imitrex, Fiorinal...etc.  Don't believe the bullshit about stopping them against a doctor's advice.  That's the pill pushing companies talking.  Sure, an abrupt change in dose of anything could cause stress on your system, but come on... take control yourself.
 
You could stop 90% of your meds without any risk.
 
Look, it's thrilling that you actually have an appointment with him on Monday.  But don't look at it like the one and only source of help.  He could be completely ignorant about O2... that doesn't make O2 bad for you.  He wouldn't be a very good pill pusher for the big boys if he put you on such an easily obtained and effective abortive.  I'm not saying they are all pill pushers, but you have to admit, it looks like you've run into a few doctors who like to throw meds at you, in quantity.  At the end of the day, it's YOU putting that crap in your body, not them.  So YOU are the one paying the price if they are a little too liberal in their willingness to prescribe.
 
For what it's worth, I would never work with a doctor who could not or would not talk to me when *I* needed to talk to him.  What the hell kind of doctor is that?  CH doesn't fit nicely into an appointment book.  For a neuro to treat a CH patient this way is evidence of extreme ignorance about CH, in my humble opinion.
 
I don't write this just to see my name on a msg board.  It comes from the heart and a true desire to see you find respite from this pain.  Please try to understand that.  I say what I think, and I'm sorry if it seems hurtful, it's not meant to be.
IP Logged

"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
Lizzie2
CH.com Alumnus
New Board Hall of Famer
USA 
*****




"L'Chaim"~Hebre w Toast~"To Life"

  Lizzie52004  
Email

Gender: female
Posts: 4458
Re: Leaving the boards and chat for awhile...
« Reply #15 on: Dec 24th, 2003, 6:57pm »
Quote Quote Modify Modify

Ay...whoever made that post about how easily things get taken awry on posts...it's true sometimes.  I don't dismiss O2 because the ER doc told me it wouldn't work.  He told me it didn't work for his CH patients.  I told him I knew at LEAST 30 other people who would beg to differ.  And then he said there is no difference between a tube and a mask, so I said well according to them, there is a BIG difference (I didn't have the O2 info sheet with me at the time...so I couldn't just hand it over to him in order to give him a little *education*).  So I settled for his treatment.
 
However, this doesn't stop me from believing it could help.  That's why I won't go to the neuro anymore if he won't help past Monday.  The reason I'm hanging with him now is because Monday isn't just an appointment.  It's the start of a 2 week long hospital stay to help bring my NDPH down to a normal level.  It hasn't been below a 7 since September.  That's why I haven't fired the guy yet despite how pissed off I've gotten at him for all his comments and actions.  Because I NEED help bringing the NDPH back down or I won't be able to go back to my final semester of college this spring.  Unfortunately, I have to make compromises even when I most do not want to.
 
The folks at Jefferson are world-reknowned in treating headaches.  My former neuro there, who I liked very much, was working on research on CH.  And they do know a great deal about it there.  However, I do know of one person with CH who left after seeing the director because he thought the treatment wouldn't help.
 
And to clear up one point that many people truly do not know and have been commenting on, apparently...I have NOT been formally diagnosed with CH by my neuro.  He was the same wonderful man who said that there was no point in treating or aborting the stabbing headaches I was getting awhile back that seemed so very much like CPH that was messing up my figure skating and driving and various other activities.  The day after I saw him, I went to the ER at Penn State for a severe stabbing headache that had lasted for 2 hours.  I had tried DHE, kicked the wall, couldn't keep my right eye open, had congestion and tearing...and I was in tears.  So I definately do not see him as any kind of god!  
 
Over time, the headache frequency has lessened from 20 times a day to about 3 times before bed (after 5pm) to 3 times during the night.  However the headaches are always 1-2 hours in length.  I still have the tearing and congestion.  The headaches are always on the right side.  I do kick the living hell out of things in my room.  I do not, however, have a formal diagnosis of CH.
 
Just to reiterate that one more time...I do NOT have a formal diagnosis of CH.  
 
I hope my neuro will do a more formal evaluation and actually listen to me instead of blowing me off when I tell him about these headaches like he did a month and a half ago.  Originally I wasn't supposed to go back until February.  But I contacted the office right after my first appt with him with how severe my daily headaches had gotten, and he wanted me to be admitted during my last week of classes at school, but I had to wait until the week after Christmas.
 
While I do hope that he works with me to get rid of the meds (I can't just cut some of them out due to cardiac issues...I know...just one more thing), I will be the first one to run away from him if he refuses to work with me this time around.  However, I do know that he will be helpful with the NDPH over the 2 weeks, which is why I've tried to be as cooperative as possible for now.  I really really need help to feel better from that if I am going to try to get anywhere in feeling better with anything else!  I don't know if this explains the neuro issue any better, but that is just a part of it.  Let's see how many more things I can mis-explain with my words before this night is done.  Wink (I'm smiling when I say that!)
~Lizzie Smiley
IP Logged





Lizzie2
CH.com Alumnus
New Board Hall of Famer
USA 
*****




"L'Chaim"~Hebre w Toast~"To Life"

  Lizzie52004  
Email

Gender: female
Posts: 4458
Re: Leaving the boards and chat for awhile...
« Reply #16 on: Dec 24th, 2003, 7:05pm »
Quote Quote Modify Modify

And one more explanation and then I will stop explaning for a little bit, unless anyone asks me to explain anything else, in which case I will be more than happy to explain some more if it will help to smooth some things over!
 
Regarding my message board name of chronic_chic....it TOTALLY has nothing to do with chronic CH!  When I heard that people were offended by this...I was a little surprised, but this is ok, I will explain where it DID come from.  I have been using this name on other message boards, and I have wanted to keep it consistent...however on achenet (this is the exception) I use the start of my email...Lizzie52004.  Chronic_chic originated out of the fact that I have had a chronic headache condition with no pain free time for 3 years now.  So do I have a bad ass chronic head pain condition?  Yes.  Is it chronic CH?  No.  I hope it does not ever turn into that, and I'm sorry for offending those of you who DO find this name offensive!
 
~Lizzie
IP Logged





BlueMeanie
Guest

Email

Re: Leaving the boards and chat for awhile...
« Reply #17 on: Dec 24th, 2003, 8:08pm »
Quote Quote Modify Modify Remove Remove

Just wanted to add my current story about the visit to the doc on Tuesday.
 
I've been waiting 5 weeks to see him. I get there all excited about finally having a chance of getting some O2.
 
I used O2 years ago when I was seeing a neuro. I never knew about the rebreather mask and high flow regulator. All I ever used was the small bottles with the tube and 5 Liter flow. It hardly ever stopped my clusters.
 
I took my printed O2 page with me to show him what I needed. He said no way !!!! He told me that yes, maybe it works, but basically he cannot be liable for a high flow reg & mask. He said at a 12-15 Liter flow that there is TOO much a chance for permanent BRAIN DAMAGE and that much would only be used on patients who where on the DEATH BED.
 
Of course I told him about this sight and how everyone uses it and it's the only way to stop a cluster. He still said NO.
 
On the up side, he reffered me to a good Neuro in Lake Forest IL. Problem is, it's gonna take another 5 weeks. By then (Hopefully) my cycle will have ended.
 
Sure glad for Imitrex and Amerge though. He did give me a nice Christmas care freebie package and lots of refills.
 
By the Way. MERRY CHRISTMAS. Glad your talking it out Chronic-Chic. (I don't care if your name is Chronic (Kinda like it.) Thanks Fubar for helping out.
IP Logged
TxBasslady
CH.com Alumnus
New Board Hall of Famer
USA 
*****




Bass fishin' is a h00t  It's the catchin' that sux

   
Email

Gender: female
Posts: 3201
Re: Leaving the boards and chat for awhile...
« Reply #18 on: Dec 25th, 2003, 1:05am »
Quote Quote Modify Modify

Well, for sure nothing is ever accomplished by quitting!
 
Evidently, there are some here who participate in a bit of gossip.  Too many people here for this to be a "perfect" place.  You have to remember.....we all are different.  
 
I certainly don't agree with everything posted here on this board.  However, I do have the choice to reply....or not.  And I exercise that right regularly!  And so far as emails.........I can delete them also!  But....this board and the info here is way too valuable to walk away from.  I could not do it.  I don't think ANYONE on this board could ever upset me enough that I would leave.
 
Gossip is useless.........it does harm and no good.  If you feel that you have been treated unfairly, then you need to go to the source and settle whatever the problem is.  But leaving is really not the answer.  However, we all do what we feel we must, I suppose.
 
As for me, (and I have said this before LOL) "I didn't come to play.....I come to stay!"  
 
There may be some here who don't like me......I honestly don't give a damn.  I came here because I have CH......I needed knowledge and support and alot of help to get thru the bad times.  I found that here.
 
I could never leave the people who came thru for me, when I was as the end of my rope.  
 
I sincerely hope that you find the answers you need.  Hopefully, you will come out of this with the right combo of meds you need to overcome the ha's.
 
Merry Christmas to you and your family.....
 
PF vibes,
 
Jean
IP Logged

How lucky I am... to have known someone who was so hard to say goodbye too.

Take a kid fishin
www.takemefishin.org

I adopted a Vietnam POW/MIA from El Paso, Texas!
stevegeebe
CH.com Alumnus
New Board Hall of Famer
USA 
*****



I love YaBB 1G - SP1!

   
Email

Gender: male
Posts: 1342
Re: Leaving the boards and chat for awhile...
« Reply #19 on: Dec 25th, 2003, 6:54am »
Quote Quote Modify Modify

Jean,.. I can see you thinking this.  
 
Well said.
 
Steve G
 
IP Logged
jonny
Guest

Email

Re: Leaving the boards and chat for awhile...
« Reply #20 on: Dec 25th, 2003, 10:07am »
Quote Quote Modify Modify Remove Remove

on Dec 25th, 2003, 1:05am, TxBasslady wrote:
 I don't think ANYONE on this board could ever upset me enough that I would leave.

 
And they better damn well not try!!!! Grin
 
...................................jonny
IP Logged
rumplestiltskin
Guest

Email

hello/goodbye club
« Reply #21 on: Dec 25th, 2003, 10:48am »
Quote Quote Modify Modify Remove Remove

Chic
I know EXACTLY how you feel. I have been banned from chat a couple of times. People say awful things in secret behind my back. I can feel them rolling their self rightous eyes when I post. I have been invited to leave this board. I have been wished dead.
 
We are in good company. These filthy louts have been treating us this way fer years here, in chat, in their grimey little email cliques and their wink-wink-nod IM's.
 
4 years ago, if ya had CH and wanted it gone, there was no other place to go with this much growing info...so I adopted "Take what ya need and leave the rest" as my attitude. I sit typing this painfree after a long peaceful night's sleep which I owe not to my Docs....butt to information I got here.....and tried.
 
In the ensuing years these small minded hypocrites have flooded my son's hospital bed with presents and phone calls, visited me in rehab, prayed me through some dark days. I hate it when people I really don't like.... love me. Damn whos!
 
................................................ahhhhh........conquered the urge to post a smiley.
 
Wage Peace
den
IP Logged
don
Guest

Email

Re: Leaving the boards and chat for awhile...
« Reply #22 on: Dec 25th, 2003, 10:54am »
Quote Quote Modify Modify Remove Remove

Quote:
These filthy louts have been treating us this way fer years here

 
Aint known ya that long. Gimme a chance to ketchup!
IP Logged
Lizzie2
CH.com Alumnus
New Board Hall of Famer
USA 
*****




"L'Chaim"~Hebre w Toast~"To Life"

  Lizzie52004  
Email

Gender: female
Posts: 4458
Re: Leaving the boards and chat for awhile...
« Reply #23 on: Dec 25th, 2003, 9:28pm »
Quote Quote Modify Modify

Jean,
 
I guess sometimes for me when the pain has been getting worse and worse lately, I have become overly sensitive and receptive and also more bitchy...just ask my mom..she'll happily tell you!  Wink  So things that were going on started to wear me down.  I was going to take a break because when you start to feel more upset by your support system than helped by it, every now and then it is worth it to step away and gain some perspective.  However, two very close friends I've made gave me some very honest thoughts on it and how I could explain what I needed to say in order to "talk through things" as blue mentioned above.  
 
Because of them, I feel like I've gotten a lot off my chest, and although I've still been a little hesitant at posting and chatting sometimes, I am trying to just work through things.  It comes from a bit of history where my freshman roommate was a New Yorker (from NYC) and I was a Philadelphian.  We used to get so pissed at each other, and there'd be drawer slamming contests and closet slamming contests.  Then finally we'd talk and then scream and then talk.  We'd finally work things out and then that night we'd wind up laying in our beds singing songs from "Rent" a capella until we fell asleep.  Conflict management at its best. Smiley  
 
Blue, I'm sorry to hear about your O2 incident.  I hope that your new neuro will give you a script!  Even if you are out of cycle, hopefully you'll have it around for the future.  I know for cystic fibrosis there is such a catch 22 for O2.  The more you use it, the more your lungs become dependent on it.  In CF, you work your way up to 100% by the end before death.  And staving death off for as long as possible is the key...life expectancy is the late 20s or so these days.  It just sucks that the one thing that will help you (O2) will also make you worse long term with CF.  I'm glad it doesn't work that way with CH.
 
Fubar, I just wanted to say I do take your advice very seriously about the meds and all.  In my ideal plan, I would go off of all 5 preventives and then add one med back (probably a different one), such as indomethacin...just  to give it a try.  If that didn't work, I would go off that one before trying a different one.  So that is what I plan on discussing with my neuro.  DHE isn't such a bad abortive, but I don't use it very often.  Thorazine doesn't really do much for me other than make me sleep.  I can't use trex, so hopefully getting O2 or something else along the ways would really help me out.  It will all depend on how the stay goes.  I need to make sure I still take care of the NDPH while trying to tackle the possibility of CH with my neuro.  We'll see!  Anyways...I just wanted to let you know that I do listen and take your advice seriously.
 
Take care and PF Merry Christmas to all! Smiley
 
~Lizzie Smiley
IP Logged





fubar
CH.com Alumnus
New Board Hall of Famer
USA 
*****





   
Email

Gender: male
Posts: 1933
Re: Leaving the boards and chat for awhile...
« Reply #24 on: Dec 25th, 2003, 10:44pm »
Quote Quote Modify Modify

Lizzie,
 
Thanks for listening.  I worry that advice like mine is interpreted as preaching or condemnation or whatever.  All I'm trying to do is share a point of view that may be painful to explore, but ultimately must be considered.
 
With pain, I think the more we do to control it with chemicals, the more we lesson our chances of being pain free.  Certainly, chemicals have their use, and they can be amazingly effective.  However, the moment you start using multiple (and possibly conflicting) prescriptions, you lose all ability to determine what is causing your pain.  In fact, at that point, you tend to escalate your use of prescriptions to cover all the new symptoms produced by the medications.  In this state, it is too damn easy to become, usually unknowingly, quite dependant on the meds.  It makes you believe that stopping any or all of them will lead to only more pain, when in fact this 'pain hump' is the only way out of the hell that you live in.
 
I think this advice applies no matter what you’re diagnosed with, CH or not.
 
Did any of that make sense?  I hope it did.
 
Again, thank you for taking this seriously and not as an attack.  I wish PAIN FREE vibes to you and best of luck in your hospital stay.
 
Merry Christmas.
 
-Shawn
 
IP Logged

"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
Pages: 1 2  Reply Reply Notify of replies Notify of replies Send Topic Send Topic Print Print

« Previous topic | Next topic »


Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB © 2000-2003. All Rights Reserved.


©1998-2010 Web Vision Enterprises All rights reserved. All information on this site is protected by international copyright laws. You may not re-distribute any information from this site without written permission from Web Vision Enterprises and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

test rss