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 Psychcentral.com )

"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

Defining "Rebound " Headaches

A few of my fellow 'Trochlear Migraine' buddies have asked me to put on the blog how I define what a rebound headache is... So here goes.

After reading "Heal Your Headache" by David Buchholz, MD I finally understood what was meant by a re bound headache.  But I still didn't think I was having trouble with that.

Our neurologists tell us we are only allowed 2 days a week of pain meds.  This is not comprehensible if you suffer from chronic almost daily headaches/migraines.  What do you mean I can't take SOMETHING when I have a headache?!  

I was at a point of taking 100mg of Indocin daily with a narcotic for the really bad days. It was no longer working... That's when my neurologist explained it to me best. 

Dr. Bucholz explains that when you take a pain reliever, the pain receptors in the brain are 'bound' with the medicine, and the pain receptors are quieted... but after the pain receptors have been trained to expect the pain med to bind them, the now will sort of SWELL looking for the pain medicine when it wears off.  They want to be 'rebound' with the medicine.  They stay LOUD and searching searching, searching, looking to be bound with pain medicine. 

Then my neurologist explained the next step. She told me what I have is a 'monster of a problem'.  Daily Headaches.  But after a while it becomes a Tyrannosaurus Rex and you just can't feed it enough pain meds to keep it happy.  Soon you land where I was at... Nothing is working....NOTHING! 

I was devastated, but I knew she was right.  I had to stop my daily pain meds.  Ibuprofen, tylenol all of it.  I cried all the 3 hours home mostly because I knew she was right.  I was scared.  I had to loose what I thought was my safety net.

I am happy to report however, after making it through the rebound stage, ( two days)  I wasn't any worse off than I was before and maybe a little better.  My stomach was the happiest as all the years of meds had chewed holes in my stomach.  

Best part is that when I did take pain meds.  They actually stopped the pain, and I got a two day break, enough to build up strength to face the pain once again.

Fun fact?  According the to infamous HoneyChuck... you can have meds round the clock if you need on those two days. Its not the amount you take its the length, it can't be longer than two days or else you train the pain receptors all over to expect the pain meds.

You could discuss maybe trying a prednisone taper while getting off your pain meds. 

Now... my next adventure should be caffeine headaches... I'm just not ready to give up my Jo though.