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Message started by catlind on Nov 11th, 2009 at 9:42pm

Title: Today I got a new lease on life....
Post by catlind on Nov 11th, 2009 at 9:42pm
I had my appointment with the Dr. that Prof. Goadsby directed me to.  His name is Dr. Alan Finkel.  This man spent a full 2 hours with Clark and I, and he went over every single aspect of my life and health.  I was not just a headache, I was a person, and one he wanted to know everything about so that he could tailor a treatment that would give me maximum quality of life and potentially the chance at full pain freedom.

I was at the end of my rope with my head, and after losing Wiley on Monday, if this appt had been yet another Dr. that was clueless, I can honestly say I would probably have joined Wiley.

This man has guaranteed that, that option will never have to be one I look to ever again.  He even knew all about the buster research and the BOL trials;  He asked if I could get into the trial here LOL.  He was just absolutely amazing, he isn't just a Dr., he's a human being who FULLY and COMPLETELY understands what a headache sufferer, (any kind) but most especially CH sufferers live with every day.

He goes to Ft. Bragg twice a week to treat soldiers that have suffered TBI's (traumatic brain injuries) from post concussive blasts, and have been showing up as clusters as a result.  Now to me that's a pretty awesome thing for a civilian doc to do.

I could go on for pages about everything he said and did, but he has started me on a plan to get my head fully under control and to deal with the TBI I suffered last year from my falls.  His words were "You and I are gonna drive off a cliff about 3 different times, as we start the phases of your treatment, and the first cliff we are going over starts today" - not here's a pill, hope you land safely, but he's jumping straight into hell right along side me.  He gave me 3 scripts, one to treat the pituitary cyst initially - something to lower the pressure in my noggin, and another for the migraines, and the 3rd he calls my "feel good pills".  Because so many chronic CHers, or any chronic pain sufferer, often deal with depression, and the standard anti depressant meds tend to not work well with CHers and have the potential for seratonin syndrome because of triptan usage, he has a very novel approach.  Amphetamines.  I about fell off my chair, but he fully explained how it works and even drew me pictures LOL.  The legal amphetamines that they use cause a release of seratonin, norepinephrine, dopamine (that's the biggie) and epinephrine, as well as work on the next level down with the CGRP's and one other thing that I can't recall at the moment.

So, he sent me home with a bunch of 'black beauties' and told me to adjust them up or down as needed until I got to a place where I had more energy and felt good - my feel good pills.  There is some evidence they do help with headaches, but his primary reason was to get my mental status to a place that would be far better off and thus opening more avenues for other treatment options.

He told me about another drug as well, that he says in short order every CHer out there will be banging down their docs doors begging for it - apparently it lets you sleep, and will allow you to sleep through the night and cause any REM or night time attacks to never materialize. 

Oh and he says PG is short ;)

I simply cannot express adequately just how wonderful this man is.  He has just taken one very at risk 'patient' and ensured that I was no patient, I was a whole person with a condition that impacted the whole of my life and turned it into a situation with hope and help and given me the gift of looking forward to the future.

Next time I see PG I'm going to hug his neck for sending me to him :)

So anyone in the NC region - Chapel Hill area (it's a 3.5 hour drive for me, and worth every minute) if you don't have a really good headache specialist, this is the man you want to see.  And miracles of miracles, he fully accepts military health care!!!

I am so very thrilled.  I would LOVE to see a conference with both PG and Finkel speaking - that would be a mind blowing explosion of knowledge and understanding.

Cat, who has a new lease on life!!

Title: Re: Today I got a new lease on life....
Post by barry_sword on Nov 11th, 2009 at 10:02pm
Cat, all our prayers this works for you. Let us know. So happy for you! :)

Title: Re: Today I got a new lease on life....
Post by Grandma_Sweet_Boy on Nov 11th, 2009 at 10:32pm
Awesome news Cat.  Keep us posted as you go along on this journey.

Hugs
Carol

Title: Re: Today I got a new lease on life....
Post by Melissa on Nov 11th, 2009 at 10:49pm
That is FANTASTIC Cat!!  I am SO HAPPY for you!!!

:) :) :) :) :) :) :)

Title: Re: Today I got a new lease on life....
Post by just-squiggles on Nov 12th, 2009 at 12:13am
Cat
    I am so happy for you!!! You have helped so many of us a to tie a knot in the end of that rope,NO WAY do YOU get to let go of it!!! Thank you for sharing,this post just made my day :) [smiley=lick.gif] <<--I couldn't find the licking lizard ;) ;)

Title: Re: Today I got a new lease on life....
Post by George on Nov 12th, 2009 at 12:16am
Sounds like you got a keeper, Cat.  Couldn't be happier for you.

All the best,

George

Title: Re: Today I got a new lease on life....
Post by dougW on Nov 12th, 2009 at 12:17am
Cat:

I am truly so happy for you.
This is a great start, he has you on a new path.
Just watch out for those damn little bumps along the way.   ;-)
All will be well.

Take care.
Doug

Title: Re: Today I got a new lease on life....
Post by Joni on Nov 12th, 2009 at 12:42am
So happy for you!!!  Pleas keep us posted as I am sure everyone is interested!!!

Title: Re: Today I got a new lease on life....
Post by Iddy on Nov 12th, 2009 at 4:17am
Wonderful news Cat. Made me all fuzzy :)

To your new life! Cheers!!!!!

Title: Re: Today I got a new lease on life....
Post by LeLimey on Nov 12th, 2009 at 4:19am
I'm sat here flooding with happy tears - I'll call you later
love
helen x

Title: Re: Today I got a new lease on life....
Post by Jackie on Nov 12th, 2009 at 6:36am
Finally!!!  I'm thrilled for you, Cat.  It's been a long battle.  This is going to turn out well....I can just feel it.
Trust and hope....two very important elements for well being.

Love & Hugs,   :-*
Mom (the other one)

Title: Re: Today I got a new lease on life....
Post by Kevin_M on Nov 12th, 2009 at 7:08am
He summed up a lot in two hours for you, sounds like he has a grasp on his profession and jumps in with you with the tiger.



Quote:
  He goes to Ft. Bragg twice a week to treat soldiers that have suffered TBI's (traumatic brain injuries) from post concussive blasts, and have been showing up as clusters as a result.  Now to me that's a pretty awesome thing for a civilian doc to do.


!!!!!





Quote:
... impacted the whole of my life and turned it into a situation with hope and help and given me the gift of looking forward to the future.


:)


Title: Re: Today I got a new lease on life....
Post by Marc on Nov 12th, 2009 at 8:09am
Cat,

Thank you for sharing so much detail about the Doc and his approach with you. Your entire tone sounds so optimistic that I can't help but sit here grinning ear to ear.

Marc

Title: Re: Today I got a new lease on life....
Post by deltadarlin on Nov 12th, 2009 at 8:34am
How very wonderful!  You deserve a break!

Carolyn

Title: Re: Today I got a new lease on life....
Post by Dallas Denny 62 on Nov 12th, 2009 at 9:19am
WOW!!  What an amazing post Cat!!  Congrats on your great luck!  The script for speed seems absolutely crazy but as of late I have adopted the " Whatever it takes " school of thought.  Hope it helps and keep us posted on the results.

Dallas Denny

Title: Re: Today I got a new lease on life....
Post by Jeannie on Nov 12th, 2009 at 9:36am
Wonderful news, Cat!   

Jeannie

Title: Re: Today I got a new lease on life....
Post by LadyLuv on Nov 12th, 2009 at 10:32am
I'll have to come back later and read this again, it keep getting fuzzy because for some reason my eyes keep leaking.. :'(

I am so happy for you Cat... God Bless and keep us inform of progress..

Much Love & Lots of Hugs
LadyLuv

Title: Re: Today I got a new lease on life....
Post by catlind on Nov 12th, 2009 at 11:00am
Okay, update 1.  I took the first of my meds last night, the one that is to equalize the pressure of the CSF in the sella turcica surrounding my pituitary cyst.  He warned me about all potential side effects etc. and told me it would help me sleep.  Wonder of wonders, I slept an entire night (minus 2 pee breaks hehe) and not a single experience with head pain.  Wow - that was huge in itself, I haven't slept a whole night in months now.

This morning I took my 'happy pill' lol.  I'm at a bit of a loss.  What the hell am I supposed to do with myself now?  I have all this energy and I'll be damned, I FEEL GREAT!  I know that a big part of my feeling of well being is simply having a doc that gets it and having hope again, but that doesn't explain it all.  I think my month with my little feel good pills is gonna be just what the doctor ordered lol!  It is a bizarre feeling, this whole feeling good thing.  I'd forgotten what it felt like to feel like me.  It's good to know I can remember how to feel like me, and I LIKE IT.  The dosage is lower than what a kid would get for ADHD, but it's enough to effect the dopamine, and to give me a boost in energy.  I expected to have some extra energy, but I truly didn't expect that I would feel so incredibly good about life and myself so fast. 

His approach may be unorthodox, or as he said, I work outside of the box (frankly I don't think he knows where the box is LOL) but damn, it works....  I'm cautiously optimistic, I know that a big part of this is the euphoria of having found someone who gets it, kind of like we all felt when we found our home here at ch.com.  But I have to say, I believe it's doing what it's supposed to be doing.  I feel good, heck, I feel great!  This is so novel to me right now.  I've been a lump on the couch for so long that I thought I was never going to see sunshine, happiness and small pleasures again.  And here I am today, and the sun couldn't be shining any brighter!

I looked up the name of the drug he was talking about as well.  It's called MiniPress - it's prazosin hci - it's an antihypertensive/diuretic derivative drug.  His success with it in his soldiers has been remarkable, and as he said, he suspects once the research and results are published every clusterhead will be banging down the doors of their docs to get a script.  I can't have it yet, because I'm hypOtensive, and until I've had a month with my feel good pills, (they will by nature bring my BP up) he won't risk this med to help with sleep.  But when I go back in Dec. we'll revisit it.

The amphetamine he's got me on is dextroamphetamine, 5mg.  So it's a very low dose, and the instructions on the bottle are to take 1-2 twice a day;  his instructions to me were to play around with them until I found a combination that made sure every day was a happy day hehe, but to be sure not to take them after 2 p.m. - normally he would say not after 6 pm, but I tend to be very susceptible to any sort of 'upper' type drug;  If I take sudafed even, it can leave me wired for hours.  So my feel good pills will likely be a single one in the morning and that should be more than enough. 

I'll keep a running diatribe of how things unfold and how well I am responding to the first phase of my treatment.  If nothing else, I may say something that will trigger an idea for another sufferer and give them the chance at the utter bliss I have found myself enjoying this beautiful fall day!

With my O2 and new arsenal I do believe I will join Pinky and Brain and try to take over the world!

Cat

Title: Re: Today I got a new lease on life....
Post by catlind on Nov 12th, 2009 at 11:08am
Oh yeah, forgot to post their website:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

And I forgot to mention one other thing that was just out of this world about this doc and clinic....

He knew we had driven a great distance to come see him, and he asked if we were going to spend the night in Chapel Hill.  He said there was a basketball game going on, and he'd be happy to get us tickets to enjoy watching the tarheels, and that he'd have his secretaries get us a hotel.

Ummm...can you say dumbfounded and speechless?  And it's pretty damn difficult to render me speechless!!

How many of your docs offered you tickets to a basketball game????

Wow, just Wow.

Cat

Title: Re: Today I got a new lease on life....
Post by Joni on Nov 12th, 2009 at 11:11am
Cat-This is soooo interesting!  Good for you!  Keep us posted...it's like watching a soap opera...I can't wait to see what happens next!!!

Title: Re: Today I got a new lease on life....
Post by DennisM1045 on Nov 12th, 2009 at 11:59am
Why you've found gold there kiddo!!!  Congrats on your new lease ;)

-Dennis-

Title: Re: Today I got a new lease on life....
Post by midwestbeth on Nov 12th, 2009 at 12:05pm
Cat,

Can you have this Dr. cloned and shipped over here?  LOL

I'm really happy for you!!

Title: Re: Today I got a new lease on life....
Post by Brew on Nov 12th, 2009 at 1:27pm

catlind wrote on Nov 12th, 2009 at 11:08am:
How many of your docs offered you tickets to a basketball game????

Just one. My PCP is the team physician for the Milwaukee Bucks. ;)

Title: Re: Today I got a new lease on life....
Post by Linda_Howell on Nov 12th, 2009 at 2:35pm

    Is he married?    jk...

I realize that the work he does in his office is good.  I wish that man would take a year or two away from his practice to teach other Dr.s all the wonderful things you just told us.   Think of a world of physicians just like him.   Boggles my mind.

You deserve to feel this good Cat.  I couldn't be any happier for you.

Title: Re: Today I got a new lease on life....
Post by Redd on Nov 12th, 2009 at 2:43pm

midwestbeth wrote on Nov 12th, 2009 at 12:05pm:
Cat,

Can you have this Dr. cloned and shipped over here?  LOL

I'm really happy for you!!


Make an army of clones and send one to each clusterhead's clinic.

I'm so happy for you Cat.  I really am.  You deserved this for a long time.

Title: Re: Today I got a new lease on life....
Post by Charlie on Nov 12th, 2009 at 4:06pm
Terrific news kid and good job with your posting.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

We couldn't be happier.

Charlie

Title: Re: Today I got a new lease on life....
Post by Callico on Nov 12th, 2009 at 9:47pm
Cat, that is wonderful news!  You hve no idea how thrilled I am for you.  You've been on my mind a lot lately, and I'm glad to hear some good news for a change.

Jerry

Title: Re: Today I got a new lease on life....
Post by jon019 on Nov 12th, 2009 at 10:02pm
Wooooo....hooooo Cat....doin' a happy dance right now...and I got no rhythm!

Just to get someone to listen is damn near impossible...to find what you found...oh my....

Best,

Jon

Title: Re: Today I got a new lease on life....
Post by LeLimey on Nov 12th, 2009 at 11:27pm
I've come back to read this three times - the feel good effect is working through your font too LOL I've seldom read anything that has made me smile as much as this  :D

Title: Re: Today I got a new lease on life....
Post by Jrcox on Nov 12th, 2009 at 11:42pm
This kind of news brings hope for the rest of us. I myself cannot wait for this. My attitude towards these attacks has changed since I have come back to CH.com.  For once in my life feeling more in control with this condition then I ever have. Thanks for the great news cat. Keep us informed on your progress.

PFD
Jrcox

Title: Re: Today I got a new lease on life....
Post by bejeeber on Nov 13th, 2009 at 1:02am
News that a doctor like that actually exists leaves me dumbstruck.

I think I'm going to even tone down my doctor bashing rhetoric for at least the next 10-15 minutes on account of it.  ;)

Thank God you found him, and here's hoping he continues to work out great for you. :)

Title: Re: Today I got a new lease on life....
Post by gore2424 on Nov 13th, 2009 at 1:42am
Cat sssssoooooooooo happy for you
{{{{{[[[(((HUGS)))]]]}}}}}
Terry Ü

Title: Re: Today I got a new lease on life....
Post by lorac on Nov 13th, 2009 at 8:19am
YEAH   HURRAH  AND   WOO HOO !

Title: Re: Today I got a new lease on life....
Post by catlind on Nov 13th, 2009 at 11:03am
Okay, update #2, and I'll be posting this in a separate thread as well, and I'm pretty sure the why will be self explanatory.  And I apologize in advance for the length as this is half update, and half motivational/epiphany/inspirational type stuff.

My head was pretty iffy through the day yesterday, the weather related head pain/pressure from Ida was trying it's damn-est to hang on, but I pushed through and while it was a bit bizarre to have my head hurt and still have a great sense of well-being, I wasn't gonna complain.

Got a full 7 hours sleep - man that is great - except for a wake up call for a pee break again hehe - and I would probably have slept longer except one of the cats decided to send my shaving cream crashing very loudly into the bathtub.  S'okay, 7 hours is lots more than I'd been getting.  And for me, anything between 6 and 9 hours is the safe zone to protect against the beast.

Had some mild shadowing this morning, but a quick puff with the O2 and it wandered back to whence it came.  I should note here that I had worked with Bob Wold a couple of times over the last 4 weeks (intentionally ambiguous for a variety of reasons here - but Doc Finkel is fully aware and thinks it's an awesome avenue of treatment and research) so the CH aspect of my head is relatively well behaved at the moment considering this is classic high cycle time for me.

Took my little happy pills about 7 a.m., as well as the diovox for the pressure in my head and general CSF pressure - I suspect that the bit of head pain/pressure I experienced around about 8:30 a.m. is a result of my body adjusting to the new meds and trying to equalize the pressure which in my case pretty high (LP pressure of 24).  I like my feel good pills  [smiley=happy.gif] [smiley=jammin.gif] [smiley=grin.gif] [smiley=laugh.gif] [smiley=sayyes.gif] [smiley=smug.gif] [smiley=thumbsup.gif] hehe.  Clark and I had a long talk last night about how best to approach this whole new world that is before me.

I also talked at length with Helen about it as well;  I am still cautiously optimistic, but I am being realistic and I understand that there is no pill in the world that can MAKE you a happy person all day every day in every circumstance, and that there will be bumps in this road, and this journey will have some obstacles and hurdles.  Ya know what? That's ok.  I know I can handle them now.  November 10th I would have told you I couldn't.  Today, I KNOW I can.  So I'm feeling good, feeling just like the Cat I am, the person I like.

Now here's the epiphany part that I will also post separately.

All my life I set pretty huge goals - I said I would finish high school in 4 years - at the time, in Canada, I was an 'advanced' hono(u)r roll student primed to go to University, which required FIVE years of high school - you had to complete grade 13.  While I didn't actually graduate - that's a story for another time, I did accomplish the goal I set out to do - I had my grade 13 credits completed by my 4th year.  I was a competitive gymnast from being wee little.  In high school I was on the gymnastics team as well as coached the little kids;  I made up my mind I was going to get good enough to go all Ontario, and that I was going to be the coach of the high school team that took our entire team to the championship.  I did just that.  I made all Ontario for balance beam, and in my 12th grade year, I was co-captain with Kathy Mathis of the entire high school team.  The championship competition was being hosted for the first time at OUR high school, and I had broken 2 fingers and kept missing my turn catch on the uneven bars.  I had decided to drop out of the uneven bar event so as not to jeopardize the team with a poor score.  Well I was talked into doing it anyway - and I'll be damned, I made the catch even with my two fingers taped together.  That presented a wee problem.  I didn't know how to continue the routine from a catch, I'd always missed.  So I had to drop to the floor, turn around and remount the bars and complete my routine as if I HAD missed.  I scored a whopping 1.9 out of 10.  WDSS (my high school) won the championship - BY ONE POINT - message here? the smallest of contributions from anyone at all can be the deciding factor between winning and losing.  I was also a swimmer and was training to be a lifeguard.  I grew up on the St. Clair River and had seen 3 people drown because they did not know how to swim well enough and because there was no one other than my father who was trained and capable of rescuing a drowning victim.  I decided I was never going to see another person drown and set about my Royal Life Saving Society of Canada training to get certified as a life guard.  At that time, certification was the Bronze Medallion - it changes regularly - Bronze Cross, Bronze Star, Bronze Medallion etc. - but the requirements are always the same.  The goal however was not just to get my certification, it was to get it BY THE TIME I WAS 16.  I've already told you I was a competing gymnast at the same time, coaching the little kids, and cramming 5 years of high school into 4...getting the picture here?  Well this is where the first obstacle reared it's ugly head.  The law says you cannot be certified by the RLSSC before the age of 16.  Oh shit.  I have just committed myself to being certified by the time I was 16!!!  It took some doing, but I managed to get my coach and instructors to go to bat for me, the Bronze medallion certification course began in September 1983, and finished Feb 15th 1984.  I turned 16 Feb. 6 1984.  We did a lot of finagling but the RLSSC relented and allowed me to take the course and then write the certification exam and do the water certification as I would BE 16 when I did those things.  Cross another accomplished goal off the list.

Here's the thing.  On November 11th I saw Dr. Finkel and I got a brand new opportunity to make my life good again.  The change has been incredibly dramatic and extreme.  From ready to join my cat in the afterlife on Nov. 10th to ready to take on the world on Nov. 11th.  Doesn't make a lot of sense really.  Sure a pill can help, but it shouldn't be able to do all that!  My feel good pill didn't bring on this epiphany, it simply let me feel like me again, just long enough for me see something in me that I had always known, the thing about me that I really like.  Dr. Finkel has done his part, and now I'm doing mine.  All the drugs in the world cannot create success if the process is one sided.  I have to do my part in this journey as well.  I've laid the ground work as best I can at this moment to ensure my success.  The option of suicide is not an option. "Too bad, so sad, you don't get to quit.  You've achieved goals that were considered impossible and you did it because you simply were too dumb to know there was any tiny possibility you could fail."

This journey is the exact same thing as all the other goals and achievements.  I KNOW with 100% absolute certainty that I am going to succed in this journey.  How do I know?  Why am I so certain?  Because I have Dr. Finkel, and I have a great support network, and every fiber of being in everyone of those people has screamed at me that it's simply IMPOSSIBLE to fail in this journey;  The universe has made it quite clear that I'm once again too dumb to know that there is any possibility of failure out there.  It's that simple.

So, here's to success and happiness, and a brand new beginning to my life that was once filled every day with joy and love and challenges that I thrived on and loved overcoming (cause I was too dumb to know I could lose them), and now can, and WILL be that way again.  There's something to be said for being dumb when it comes to certain things ;)

Cat

Title: Re: Today I got a new lease on life....
Post by Dallas Denny 62 on Nov 13th, 2009 at 11:47am
Wow Cat!!  The last 3 paragraphs made me cry like a baby....as a survivor of 2 suicide attempts in 1998, your words really hit home.

A couple weeks ago, after being in cycle for a couple of months, I was sittin out on the deck in that " been dancin with the beast depression......bent over in a chair, head down, wringin my hands.....when I happened to notice the scars on my wrists and the whole scene of that day in a motel room played out instantly in my mind.  I cried like a baby then also.


I am so fortunate to have survived and see my then 5 year old son grow to be a man of almost 20.  I dropped him off at daycare hours prior to both attempts, kissing him goodbye and knowing it was the last time he would ever see me alive and I still couldn't not go through with it.

I realized how insignificant this cycle is compared to that time in my life when I couldn't get adequate amounts of Imitrex to even knock out 2 of 10 hits a day AND....I knew nothing about O2....

....and this cycle I knocked out all but 6 or 7 hits with O2....PF goin on the 3rd day.....

God is great, Beer is fixin to be good again, and just maybe....I ain't crazy....hmmm....well...2 outta 3 ain't bad ya'll   lol


Dallas Denny
 

Title: Re: Today I got a new lease on life....
Post by catlind on Nov 17th, 2009 at 10:22am
Figured I'd better put up a quick update or you all might think I'd fallen off the planet again hehe.

Got hit with a stomach bug on Sunday afternoon, and have been battling the latest round of illness, along with Andrea.  I figure her and I both picked it up when I had her at the Dr.'s last week - nothin but a damn petri dish there I swear.

Mentally still positive, just pissed off that I'm freakin sick again.  Ah well, this too shall pass.

Cat

Damn the school policy around for failing students who have 5 absences excused or unexcused, they are spreading every damn virus they can.

Title: Re: Today I got a new lease on life....
Post by just-squiggles on Nov 17th, 2009 at 10:38am
Hi (((((Cat))))
    Sorry that the bug got ya,it sucks,been down with it here too.That sixth sense must be working again because I was just about to bump this for an update. So how's yer head doing?

Title: Re: Today I got a new lease on life....
Post by LeLimey on Nov 17th, 2009 at 1:44pm

Dallas Denny 62 wrote on Nov 13th, 2009 at 11:47am:
God is great, Beer is fixin to be good again, and just maybe....I ain't crazy....hmmm....well...2 outta 3 ain't bad ya'll   lol


Dallas Denny
 

[smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif]



Title: Re: Today I got a new lease on life....
Post by barry_sword on Nov 17th, 2009 at 6:59pm
A compassionate doc, so happy you found one. My neuro is one of them.
Although no tickets to a basketball game, he is a keeper. Maybe my neuro likes Hockey? it's a Canadian thing!  ;D

So happy for you Cat!!! [smiley=hug.gif]
ps: Ceaser is doing much better. :)

Title: Re: Today I got a new lease on life....
Post by Carl D on Nov 19th, 2009 at 1:56am
That is so awesome Cat. Everyone knows how hard it is to find a good Doc. May many blessings abound from this.

[smiley=sayyes.gif]

Title: Re: Today I got a new lease on life....
Post by catlind on Nov 23rd, 2009 at 8:36am
Hello all,

Figured I'd better actually give some sort of an update on how I'm doing as far as treatment goes :)

Other than being laid out for a week with whatever the latest bug du jour was from the petri dishes called schools, things have remained pretty positive.

Since there are so many different issues that have to be addressed with Doc Finkel, it's going to be a slow process as far as actual treatment with the noggin.  He has to keep consideration for the TBI as well as the pituitary cyst in the arena of potential causative factors for the non-CH headaches, and of course then try to find a successful treatment for CH and the migraines with aura.

So far both meds seem to be doing what they are intended to do.  What's been really cool is that while I was sick I had 2 full days without the new meds (couldn't keep anything down including a sip of water) and a 3rd that I didn't take my 'feel good' pill.  Even without taking them, I was able to maintain a positive mindset and not backslide, which was a real surprise while I was sick.  I'm a very impatient patient.

Haven't had any full blown hits, but I can't say that is from the new meds since I had a go at alternative treatment to try and get this typical high cycle time of year under control for me.  Lots of shadows that have gotten rather annoying though, but nothing that has gone above a 2 or 3 really.

Migraine wise, I've had a few with the various weather changes, but more so than that, the diamox seems to have brought about a sort of 'pressure' headache that is very similar in nature to when I suffered a CSF headache after having an LP.  The purpose of the med is to try to regulate the pressure in my head where there is CSF in the sella and the fluid encapsulated within the pituitary cyst.  There were plenty of minor annoying side effects from the med, but one I hadn't expected or been warned of was the pressure type headache.  I pushed through it assuming it was just something I was going to have to let my body adjust to, and so far this past weekend I've been able to take the meds without that pesky headache showing up.  So I am hoping that means the pressure is finally getting to a point where things inside and outside are all equalized, but I won't get ahead of myself as I know this will take some time, and the mild weather system that went through this past weekend wasn't really a true test of things.

Other than that though, having a positive outlook and feeling good mentally has had a huge impact on my life in general.  It didn't take me long before I managed to find all kinds of things to occupy my time with - co-hosting the 14th Weather Squadron's spouses group as the representative for the enlisted side alongside the commander's wife has proven to be a rather time consuming thing this time of year.  We have the squadron potluck Thanksgiving dinner today, we are hosting the Kids Christmas Party and are running all the various craft activities and the planned events for the day (I am running the bead station - anyone wanna make bead crafts with 15-20 kids aged 3-9?) as well as helping to get the squadron adult Christmas party organized.  That alone has suddenly eaten up my whole days, along with planning a couple of baby showers for spouses, coordinating and organizing meals and additional help for our squadron members who have deployed family members and/or have someone in the family that is ill or in hospital.  Then there's the racing kids around from this place to that, which every Mom and Dad knows is a full time taxi job all by itself!  And of course trying to get myself organized and sorted out to try and prepare for the holidays, cooking T-giving dinner and shopping and planning for decorating next week.  But I have to clean the house first.  Err, oops that's my OCD kicking in, guess I just have to disinfect with lysol and bleach really LOL.

So with that and a few other projects I've taken on, I've managed to do the very thing I wasn't supposed to do, and bite off more than I could chew while I worked out a treatment plan with doc Finkel.  One aspect of his approach that I really appreciate is that he is only addressing things one month at a time right now.  I have a follow up appointment on Dec. 17th, and he pretty much flat out refused to entertain any discussions about what happens next as far as details for treatment plans;  his attitude is 'let's see where we get to as far as stabilizing your mood and how you are feeling about the world in general before we start to tackle the more major aspects';  that and he will better be able to decide what next for treatment when he sees how I've responded to the initial phase of treatment.

It is just a whole new world and such a wonderful feeling to feel human and feel good and have hope about what the future will bring over the next year.  I know this is a long term treatment plan, and there are never any immediate complete solutions when it comes to CH, let alone when you add in complicating factors.  I'm content to enjoy the time I have right now, feeling good, and let what happens next take care of itself when it gets here - no point worrying about something I haven't yet encountered!  The biggest thing is going to be making sure I don't decide to try to take on the world right away, that I go from being laid flat by all this, to all fours, to crawling, to walking to running, and NOT directly to running marathons.

Will keep you posted as to how things are going.  So far so good though.  Each step I take from here on is a step towards to pain freedom, one way or another!

Thanks everyone for your support, it is very much appreciated.

Cat

Title: Re: Today I got a new lease on life....
Post by Jrcox on Nov 23rd, 2009 at 1:44pm
This is fantastic news. Glad to hear it. Thanks for the update. Don't know you very well.  but It is always good to hear when a suffer is getting relief and starts enjoying their time on this planet. I am almost recovered from my last cycle. And am enjoying my PF time as well.
Take care
Jrcox

Title: Re: Today I got a new lease on life....
Post by jon019 on Nov 23rd, 2009 at 8:11pm
Hiya Cat,

Enjoying your journey (vicariously) immensely. If you can make it through the flu in the midst of everything else...and maintain THAT frame of mind....well dear,
HAPPY DANCE TIME for jonboy.

Best

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