Saturday, April 29, 2017

Finally a much needed break

For the past seven years, I've pretty much had a moderate headache to full blown migraine almost everyday.
 I was classified as a 'chronic migraineur'. It's amazing what one can do with a headache everyday.  When I look back, it's pretty amazing all the things I was able to accomplish with that millstone around my neck.
I was seen by many, many doctors, all trying their very best to help me. Many injections of Botox for migraines, injections for my eye problem thinking that it was a migraine from my eye problem. ( I fully believed it was  trochleitis with a trochlear migraine ) I had a septoplasty in hopes of fixing my migraines...  No avail. I even considered disability but that is not an easy process that's for sure! . I've tried every med I think until nope, one more med, and when that failed doctors would try another. It's amazing I don't need a kidney or liver transplant.  It's amazing I still have friends, still married.
Migraines bring a whole slew of their own need for meds.  You need triptans to try and abort a migraine. You need an endless supply of ibuprofen, muscle relaxers, meclazine for vertigo and can I say I'd  like to put stock in the company that invented zofran. Zofran, hands down, is a lifesaver. Well, that and the two narcotics that saved me 90% of the time when nothing else would help.  They too had a fail rate of maybe 10%. I went through a 3.5 week pain rehab course at mayo two years ago.
With chronic pain and 'attacks of pain' at that, you develop anxiety over pain wondering when it will hit, how long will it  last, what meds to take ,  will they even work? I then needed meds for anxiety along with a rare to find pain psychologist.
Many people in this country are up in arms over the failure of health care. I must admit, I know full well the limitations involved. I'm not even allowed this year to go to Mayo Clinic which is only 3 hours from me and one of the best in the country if not the world . Plus they were my doctors for 8 years. Yet I could no longer even purchase a health plan that allowed me to go there. That's  mostly okay, lets face it, I had exhausted all angles of the Mayo Clinic. Now I had to find new doctors.
I chose the one health plan that allowed me to at least keep my primary doctor. ( there was only one plan and I almost missed that boat too)  My primary took it upon himself to find me a new neurologist. This new neurologist in MSP had a whole new take. He threw out everything that had been done at Mayo. He said most nuerologist missed the most basic trigger. He felt the first year when I just had the eye pain, I must have been holding myself in such a way it triggered muscle tension.  So he went about treating the muscle tension. His ideas had few side effects. So I didn't see the harm.  He did five injections in the back of my head in the occipital area. Then started me on a med called Tizanidine. It's an antispasmodic. I was to get up to 16 mg a night as fast as possible. It had one key side effect.... near death.  Well, if you call extremely low blood pressure and your heart beating at  40 beats per minute near death. It caused frequent bradycardia and then what I imagine was a rebound tachycardia. But after about 8 weeks of the new med plus an amazing PT person the neuorologist made me see one hour from my home. ( I did see a brief break day 10-20 after the occipital injections) anyway, I had 4.5 weeks with out even a headache but certainly not one migraine. It's quite liberating. I never thought I'd see the day.  This past 10 days I did have 1 migraine and two strong headaches. I was a little discouraged but I still feel like maybe the migraines are really behind me.  I never thought I'd see the day. I do still have eye pain. But to not have this chronic migraine? Priceless.

Saturday, April 2, 2016

Septoplasty attempt at helping the pain/ Sluders Syndrome

May 3, 2016 I'm going to see if removing this nasal spur they found in me five years ago will help alleviate some of the pain. I can only hope. But I worry.
Five years ago when mayos ENT doctor told me they found I have a very deviated septum and a nasal spur I didn't see how that was connected to the eye pain .
He gave me a 50/50 chance of it helping my eye pain.  At the time, 50/50 didn't sound like good odds.
Now, after ten steriod injections, numerous drugs and their side effects, all sorts of 'alternative treatments'. I even allowed my primary to try an idea that has never been tried. Prolotherapy to the trochlea. I think it may have helped but one I find myself back to this subject. 50/50 is sounding pretty darn good. 
See, I started a support group quite some time ago on Facebook called 'eye pain sufferers' it's a private group, you can't  find it unless you're invited. But one woman came into the group about 8 months ago and her daughter was diagnosised with trochleitis.  One night in her local ER an intern saw  her daughters scan results and reported on something called a 'contact point headache' or Sluders Syndrome where the nasal spur impacts in the sinus and causes this rare form of headache.
Her daughter ended up having this surgery that I'm going to have May 3rd hers was an almost  instant success and 100% cure. 
I have to try it. I can't allow any other radical experimental treatments until I try this one. The new ENT I'm seeing at mayo says what I have is "impressive" I laughed when he kept referring to my deviated septum as impressive and my nasal spur as "impressive." I told him, "I don't think that word means what you think it means". (To quote the Princess Bride. ) anyway, I digress. 
I'm scared.  Scared not of the pain my nose is going to be in, but  the pain that it can trigger in my trochlea.  And the migraines that could follow. I'm afraid no pain meds will touch the pain surgery to this area could cause. 
  I'm guessing I won't know for a few months if it so help the pain.  Scared silly.

5/12/16 Its now been 9 days since my surgery at Mayo Clinic.  Everyone was extremely careful not to touch my eye that whole day of surgery. The anesthisologist didn't even allow the oxygen mask on me for fear of putting pressure on the eye.  They only made an incsion on the left side of the septum avoiding the right all together.  The surgery went very well.  I didn't wake in horrid pain like I feared.  It was there ( the eye pain) But soon after waking they gave me hydrocodone.  The trochlea pain has not flared this week.  It isnt all gone yet. Its too soon to tell.  Just got the splints removed yesterday so we still have some healing to do.   I am hopeful and at least grateful it hasnt made it extremely worse.  I have had more pain meds this past week so once I reduce that we'll be able to tell what effect the surgery had on eye pain.
If anyone is researching this its also called "Sluders Syndrome"  

7/10/16 update:
It's been rough to say the least.  Almost constant trochlear pain and general ache in the superior oblique muscle. I even went and had my 11th steroid injection into the trochlea around June 6th. The trochlea was mildly phased by this and a couple weeks later the neurologist  prescribed an 80mg taper of prednisone.  After a severe severe trochlea attack one week after my neurology visit, I reluctantly took it but started at 60mg instead as I get tachycardia from prednisone and the 'jitters' are so uncomfortable. Sadly I can't say the oral prednisone phased it like I thought it should.
Strong narcotics help but even then, it doesn't take the pain away. We're dealing w a massive electrical shortage of sorts in that area.  I'm monumentally 'bummed' to put it lightly.
This upcoming week my primary Doctor is really wanting me to pick up with what he calls prolotherapy injections to treat the trochlea like a tendonitis of sorts.  I'm very torn about this too because my world class ophthlmologist at Mayo says 'no, he doesn't think it's a good idea.'  ( I think mainly as it's never ever been done in the history of eye health ). 

Yet, my primary, whom I trust greatly also, says 'yes, this is a solid effort with low risks'. 
I have no good options.  I'm very tired.  The attacks and pain leave me exhausted. The medications I use to treat the pain have ample side effects.  
PLEASE! We need more research on these stubborn cases! About three or four years ago I started a support group for people like me on FB. Two women in the group are now about to undergo removal of either the trochlea ( one woman is doing that plus her SO. and IO ) and another woman is about to have her SO. Removed.  I'm terrified of this.  My doctor at Mayo has entertained this thought also, but it would massively change my life if I pursued it.  Meaning, I would have to shut off vision w a black contact in my right eye if we removed the trochlea.  Meaning, loss of depth perception , loss of my job. Affect driving etc.  
please! If anyone has any ideas contact me.

9/28/16 Update:
I would have to say the septoplasty failed. 
My primary is trying something new.  At the end of June he started treating my trochleitis as a tendonitis. He's been injecting Mannitol and Marcaine every three weeks into my trochlea.  It stopped the 2.5 month attack in its tracks!  Unbelievable!  Let me tell ya, he's never done this trochelar injection before so It was an experiment and i was the test dumby.  But now I think he's done it four times and he's become a pro at it. We're shocked its helping after all the radical things I have done. Well, Im shocked.  My PCP not so much, thats why he went a head a tried it.  
I get botox for migraines for the past many years, in addition to everything I do.  The past 10 days the stabbing returned to the trochlea after having been quiet since July.  I was afraid of it all coming back ( still am) I talked to my neurolgist today she feels the botox wearing off contributed to return of the stabs.  When the botox wears off... it can get pretty ugly.  the past 10 days.... was pretty ugly. Severe migraines, severely nauseous, had to go to the doctor twice to get a migraine cocktail to hault the assualt. 
Anyway, to quote monte Python "Im not quite dead yet... I think I'll go for a walk"

1/3/18 update :

A week ago, I had to submit to a sinus surgery.  It seems after my septoplasty my first run in a allergy season my sinus swelled shut...making for over  year long struggle w sinusitis and finally sinus infection for over 10 months.  I’ve had so many surgery’s now, I just had my husband drop me off and we called him later to pick me up.  Surgery went well.  Just can’t believe I needed another sinus surgery, thankfully it didn’t trigger more eye pain. Had a wicked attach four days prior to surgery.  I felt like the full sinus under the eye certainly contributed.  But at least I got off NSAIDs for over a week now, :) 

Friday, December 26, 2014

The Pain Rehab Clinic at the Mayo Clinic In Rochester

Nov. 17-December 10th 2014 I attended the PRC ( Pain Rehab Clinic).
Four years ago, and aproximately just one year after my eye surgery, my eye doctor suggested maybe I should go to the Pain rehab clinic....  I was no where near ready then.

I thought it was a last resort kind of a thing.  I thought we had to exhaust ALL other possible solutions.  I felt if I went there it meant I 'gave up' on finding a cure.

Last August (2014) in my neurologist office I finally came to that point.  I had done it all, I have looked under every rock conceivable and was only surviving by the grace of Indomethician also called Indocin.

Indocin is no panacea either I guess.  After using it for long you run into more and more complications worst of which is stomach and kidney issues.  And I seem to reach a threshold where it no longer works.

I have done every conservative medical attempt.  More medications and combinations of medications than you can shake a stick at.  9 Steroid injections to the orbit.  Blood tests etc.  I stop at further surgeries to try to remedy the situation.  I learned at the PRC, 41% of surgeries result in a chronic pain condition.  I've had many a surgery.  Nine to be exact, 5 on my eyes, its no wonder I ended up with a chronic pain condition. I suppose it was bound to happen.

I have done every sort of natural remedy. And I still include some in my repertoire.  I frequently use acupuncture, massage and chiropractic.  Essential oils and Cranial sacral techniques.
I have tried some pretty 'far out there' methods.
I have learned from each modality.  However, nothing lasted.  Everything is just chasing symptoms.  Everything was reactive to the pain.

Before submitting to the PRC, I was a nervous wreck!  After I got into the program, about 4 days in, I wondered what all the anxiety was about.  Its nothing scary.

The pain, I was scared of the pain increasing I guess .  It is a commonly known fact they will pull all your crutches, that included Indocin.  Muscle relaxers, and especially narcotics. You know no other way then what you were doing.  So there is a level of anxiety that only those facing the PRC understand. My thought was I have seen every specialist on the matter.  Each gave their very best attempt and they couldnt solve it, why should I believe these bunch of 'specialist?'
But, I made the decision to go and once I make a decision I usually go full force into it.  It was all or nothing when it came to the Pain Rehab program.  I was determined to give it my all.  It was my last hope.  The statistics show it works for a lot of people I wanted to be one of the winners.  If the program didnt work for me I didn't want it to be because I didnt try hard enough.   If you ask them, I didnt just roll over and accept every morsel the "tribunal" of doctors were telling me.  But I did weigh heavily what they all said and applied what we had all come to agree on.  Anyone doctor who's had me knows I'm one to raise questions or voice my strong concerns.  The team at the PRC met every concern I had and then some.

They asked me to ween off slowly from my indocin.  So I wasnt in pain the first week.  Which was good. And the Second week I still was allowed one indocin a day.  ( I usually took two a day)
I got off the indocin about 8 days earlier than they asked over the long holiday weekend at home.  I wanted to test out life with their new suggestions in place of my old coping mechanisms.

I liked to report back to my friends and family that my 'captors were kind'
I bonded with my captors.  :) Much like Stokholm Syndrome. But all kidding aside,  They are all very nice and really do want to help you cope.

Before atteneding I searched the web for personal experiences about the PRC only to find a lot of negative talk.  It scared me. I kept reasoning, 'surely, it can't be THAT bad, Its Mayo after all! They're brilliant at everything else! Why wouldnt they do this right!"
Sure enough.  it does help!
I'm Glad I went through it. Now, I am allowed 2 days a week of NSAIDS or pain meds to treat Migraine and eye pain.  The rest of the days I do pretty good with out any pain meds and use the techniques taught at the clinic on a daily basis, not just when in dire pain.

Its not always easy to follow the guidelines they set out for you but it gives you focus on what to aim for.  I finally feel I can stop searching under ever rock for a solution. I am the solution. I have it in me.  And the few times that I may feel the situation is getting out of control? well, I have quality people I can count on.

Is it revolutionary what they are proposing? No.  But when you put it all together... it is kinda of revolutionary.  For me the breathing exercises do help alot.  Its just hard for me to sit still and do them.  They finally have me exercising almost every day.  Some how yet I have to learn to moderate my work load and keep stress under raps.  Each day I schedule myself so that I fit all the important things in, including meals and relaxation.

I thoroughly loved the education.  In order for me to really change my evil ways I need to understand why I SHOULD change.  I enjoyed learning how the path to addiction works.  I loved learning what all these meds, drugs and alcohol do in the brain and how they affect the body.  I learned why I couldnt handle anymore stress.  The pain load alone brought me high up on my personal anxiety threshold, then any little upset in my work load or family life threw me over the top and I wasnt able to handle any stress.  Knowledge it turns out, really is power.

Why does the program have to be 3.5 weeks or longer? It takes that long to see the results of deep breathing and regular exercise.  It runs from 8am - 4:45p each day to prove that a person can do a full work day and live to tell about it.

In the group I was in, almost everyone was on disability.  Some relied on canes and left the program, walking with out them.  I saw people in wheel chairs move to walkers.  I dont know, I was impressed at the power of sleep, exercise and oxygen.  Who knew?!

I am not on disability.  My way of coping with chronic pain was to do more and more and more to try to drown out the pain.  Guess what? That doesnt work either.  So now I'm working on moderation.  Balance. I'm happy to say, I hired an office assistant 6 weeks before I left.  This may be the best thing I've ever done for my pain.
It can be frustrating and a challenge to scale back.  Its a work in progress.

Let it be known ; The PRC is good.  Run by good people.  If you have been asked to go, go.  About 600 people go a year out of hundreds of thousands of chronic pain sufferers in the USA.  You should count yourself as lucky to get in.  Apply yourself whole heartily. What do you have to loose?
The pain.

Sunday, September 21, 2014

Coming to grips with Chronic Eye pain and Headaches

I felt moved to write this after reading post after post of person after person who has this same trochlea pain and subsequent attacks like I do, coupled with daily Migraines.
 I started a 'support group'.  I set out to not 'be alone' with this supposed rare condition.  Well, I found, to date, over 40 different people globally who have been officially diagnosed with Trochleitis or have self diagnosised it.

We are all in different growth phases of dealing with the pain.  The random attacks.  Trying to figure out a pattern only to learn we can't figure it out.
I am 'lucky' I guess,  I have doctors who stay in the trenches with me.  I know I have a small handful of doctors who will 'hear me out' and work with me.  They believe me!  Most others with this same pain dont have any doctors who will even try to help them.  I am fortunate in this way.

The five stages of Grieving are at play here.
1) Denial with isolation, is the first phase. "It will go away".

2) Anger;  We've all been here.  I would add Jeaoulsy to this also, Jealous of others who seem to have perfect health.  Many think 'why did I get this?"  "why ME"

3) Bargining:  ( I took this from )
"The normal reaction to feelings of helplessness and vulnerability is often a need to regain control–
  • If only we had sought medical attention sooner…
  • If only we got a second opinion from another doctor…
Secretly, we may make a deal with God or our higher power in an attempt to postpone the inevitable. This is a weaker line of defense to protect us from the painful reality."

The support group is good in that we now know to we can really stop searching for that ONE doctor who will be the genius and figure out the right recipe or see the root cause of this trochlea pain.  We are all in the same boat together. Most of our doctors are saying basically the same thing.  "we dont know, but lets try this or that"  
In this way we have helped eachother alot.  Triptans usually are need grouped with NSAIDS to help us on our horrible days.   NSAIDS help on the average pain days.  Steroid shots into the trochlea help the most. Especially with Kenalog vs. Decadron we're finding.

We learn from eachother and we know where we can go for understanding.  We all go through these phases of Grief.  After all, we lost something very valuable.  The pain free person we used to be.  We miss that person terribly most days.  When we dwell on this too much we slip into #4.

4) Depression:  Dispair.  Hopelessness.  We're going to be in pain like this for the rest of our lives possibly.  This is a horrible feeling.  But it is normal.  For me, I visit this in small spurts.  I think when you have a chronic condition of any kind you can slip in and out of these five stages at any time.  Its like the 'old you died' and yet you're still a live.  Its a very confusing place to be.
Mostly I dont like the person I am to my friends and family when I allow my self to stay here long.

But then we all know what stage 5 is....

5) Acceptance: This is the goal. Its a long hard road to get here, however, keeping this goal and step in mind while going through all  the other steps, I think, is invaluable!   
Once you come to grips with this is not going to go away.  Then You focus on 'how do I live now?"  This is my new normal.  The anger step will say "I DONT WANT IT TO BE MY NORMAL!"  But at some point, you come to grips with , 'now I have to live'  No more searching for solutions, no more playing the 'what if' game.  No more 'catastrophizing' the pain.  ( Imagining how bad it can get) 
For me, journaling my thoughts and feelings daily helps.  However, I rarely go back and read what I wrote.  I leave it all there on in my journal and I dont 'carry' that with me in my head. 

Finding a good counslor to help you move forward helps!  Mine, presently has me reading a book on being 'balanced' .  Also, she has me writing down 5 things every day I am grateful for.  This has been a good exercise.  It makes me search through my pain days and find something I honestly feel grateful for.  Even if it is something simple like "I'm grateful for this chocolate cake!"  :)  On days I really cant find five things, I settle for 3 things.  3 is better than none.

I made a pack with myself to not say 'NO' to invitations to do things with others.  To not isolate myself.
Staying distracted helps the most.  Music destracts me, funny movies, ( What about Bob? is my go to movie when I'm depressed.  Fawlty Towers is my go to show when I'm in anger mode, "Sherlock is my ultimate distraction) 
My job is medicine to me.  I've had to alter my hours so I can rest more, but I wont give it up as it serves as true pain meds.  I'm an esthetician at a spa and it helps me to relax when I help others to relax.  I love people and try to stay absorbed in their issues and trials.  Surrounding myself with others helps me to realize , 'hey! I think we all have some burden we must bear"  Personally, I have concluded the death of a child is the worst, and social/ emotional pain and  problems in the family are far worse than physical pain.  Although, I have my days where I feel 'woe, is me'

This pain experience has helped me draw closer to my creator. 
 I have experienced first hand the truth of 
                   Isaiah 40:29 
29  He gives power to the tired oneAnd full might to those lacking strength.*+30  Boys will tire out and grow weary,And young men will stumble and fall,31  But those hoping in Jehovah will regain power.They will soar on wings like eagles.+They will run and not grow weary;They will walk and not tire out.”+

I wish all of you who suffer ... Acceptance.  There is much peace in finding acceptance.  You can have your days of anger, depression, bargaining etc. But hopefully most days you spend in 'acceptance' Sincerely, Greta