Aura - or is it?

For the past few weeks, I have had several blinding visual episodes.  At this point I am not sure if they would actually be considered to be auras.  Most of what I have read is auras are different from everyone, but usually blurry vision or lights.  Mine are more like hallucinations.  The most recent two are the ones I remember best.  Early this morning I had one that was almost in the shape of a large red flower that would continue to grow and seem to move toward me.  And it is blinding - it is the only thing I can see.  And it doesn't go away when I close my eyes.  The colors change to be more like when you close your eyes and look up towards a sunny bright sky - even when I'm in a pitch dark room.  The one before that was octagon shapes, red and black, also moving toward me and growing larger.  And when I closed my eyes it turned to blue and neon yellow.

Until this started happening I forgot that a few years ago, I had similar situation where my vision would just black out and it would happen randomly (from what I remember).  I remember situations where I would be driving and have to pull over until it passed and I could see again.

I Just Want a Good Night's Sleep

A few months ago a good night's sleep was unheard of for me.  I would go to bed about 10-10:30 ish.  Wouldn't usually fall asleep until after 11 and the between 3 and 4 I was back up - and my brain was wide awake.  No matter what I tried, my brain was up, making lists, and plans, and not shutting off.  If I was lucky I might get back to sleep around 5:30 or so, just in time for my alarm to go off at 6:10 and after hitting snooze a few times I would roll out of bed, still groggy around 6:30.  This would happen multiple times a night.

To try to alleviate this, my doctor gave me stronger muscle relaxers and anti-anxiety pills to talk at night.  I have been talking these for over a month now.  I take them about 2 hours before bed and they will knock me out!  I will be going, going, going, and then it's an immediate need to be in bed now, can't keep eyes open, no we are not finished this chapter or last 10 minutes of the show!  And if I did wake up, I would roll over and be back to sleep immediately!  I have been getting my 8 hours of sleep - still not liking waking up and sometimes groggy in the morning from the pills, but a huge improvement.

Then mom said, I was too drugged up and to stop taking them and I should take an Exedrin PM (only).  Well, on Sunday I kind of took her advise - bad idea.  I only took 2 mg of my muscle relaxer (instead of my normal 6-8) and only 10 mg of the anti-anxiety pill (instead of 20 mg).  And I couldn't fall asleep and when I did, I kept waking up in pain - my shoulder and back hurt!  I talked to my doctor at my appointment that day and told him I was going to "play" with the dosage and when I take it to find a better balance with sleeping and not feeling groggy.

Monday night - took 1 muscle relaxer at 5:30 and the other 3 at 8:30.  Still never got the "knock out" feeling and kept waking up sore throughout the night.

Tuesday night - took 1 muscle relaxer at 7:30 and the other 3 at 8:30. Again no "knock out feeling".  I fell asleep with a heat pad on.  I woke up to turn it off.  And later woke up to turn it back on.

Wednesday night - took all 4 muscle relaxers and both anti-anxiety pills together at 7:30 - started to get really drowsy around 9:45 and went to bed at that time, but still woke up several times throughout the night with neck and back pain; woke up at 5:40 and put heat pad on until after alarm went off.

I can't figure out what has changed and why I am so sore at night now.  I have been doing physical therapy for 3 weeks now.  And other than with my mom's suggestion, I just lowered the dose on one day.  And the worst part is that a poor night's sleep means an even worse day ahead :(

Working Out

So almost everyone I have been working with has a different opinion about what I should (or should not) do in terms of exercise.

Massage therapist: advised me for years to try yoga for flexibility and lengthen my muscles and reduce stress

Neurologist: (after MRI) no yoga because some of the poses could hurt my neck, but Pilate's might be good; he wants me to build up some muscles

Physical Therapist: doesn't recommend exercise beyond light cardio because if you need to use muscles on a regular basis you will build them up; and then if you stop using them regularly they will go away anyways...

Chiropractor/Acupuncturist: a good balance of everything sounds good - just start light and easy - and don't hurt yourself

Me: well, nobody can agree... and I know what hurts and what doesn't... so I'll try....

I had been doing a little walking already... here and there... nothing consistent, but I did realize that with walking, the light swinging movement of my arms usually would release a lot of the tension in my shoulders.

I started by going back to www.SparkPeople.com.  I had used this site in the past, but I decided to try it again.  It is a great site for tracking well any and everything thing.  It tracks meals, fitness, exercise and other goals (even glasses of water drank in a day).  They boast being a weight loss tool, but for someone like me that just needs to track everything it's helpful and the other thing I love is all the resources that are available!  Workouts, videos, motivational articles, general well being, nutrition, diseases, recent health news, and the list goes on...

So in April I started using this site again and doing some research and I decided I wanted to start doing some very light strength training - and I decided that resistance bands is where I wanted to start.  Easier said that done.  I went shopping 3 times before I bought anything and even on the day of my purchase I spent at least 30 minutes standing in Walmart's fitness section trying to pick resistance bands.  I finally decided on this kit by Gold's Gym.  It is a great beginner's start with light and medium resistance short and long tubes with door attachment, a medium resistance band, a medium resistance ring, and instructional DVD.

Now that I was fully equipped (ok only partially, but at least ready), I needed to find out what I was going to do with these bands.  My target area is upper body, chest, arms, back, etc.  I went back to my Spark People site and they have short workout videos with bands specifically for upper body!

Last week was my first week of semi-consistent working out!  The most consistent I have been in... well, longer than I can remember!

On Saturday May 12th I walked for 30 minutes and went 1.28 miles (which is a pace for a 23 minute mile).  Oh that is another awesome feature of Spark People - they have a "Map Your Route" where you can just put in your starting address and make the points in your walk/jog/bike and it will calculate how far you went.  I have even zoomed in close and used the satellite view to find the path around a park.  I think they use Google Maps for it, but don't quote me on that!

On Sunday May 13th I walked for 25 minutes and went 1.46 miles (a 17 minute mile pace).  By the time I was getting close to home I could it in my calves!  2 walks in 2 days!

Tuesday May 15th I got adventurous.  I tried to jump rope.  I made it 4.5 minutes and my calves were burning for about 5 days afterwards, but it was worth it to try!!!  I also did my first day of strength training using a Spark People video (this is also available on YouTube so I will provide it here) 7-Minute Upper Body Resistance Band Workout  And I wasn't done here!  That evening during Kyra's soccer practice I walked around the soccer field and playground for 50 minutes of her hour practice!  I did 1.86 miles at a 26 minute mile pace.

Thursday May 17th I did some more strenght training.  I repeated the resistance workout above and included and additional workout 7-Minute Seated Resistance Band Workout for Upper Body.  After those two; my arms were definitely feeling jello-y.

My current goals are walking 3-4 days a week and resistance bands for upper body 2-3 days.  Soon I hope to be able to add to this, but as my mother says "How do you eat an elephant? One bite at a time."  And so I will do the same with this; one step at a time, especially because with me the consequences of an injury are so much more severe.

Extreme Frustration!

Yesterday was a bad day :(  I woke up with tight muscles from my middle back up my neck and into my head into a migraine.  After taking multiple pain meds, muscle relaxers and migraine medication, I had only reached mild relief.  But I have my physical therapist and my neurologist appointments scheduled for the afternoon, so was somewhat hopeful.

Went to P.T. first, and after the electo-heat therapy was feeling rather light headed, that head (temparily) released some of the tension in my muscles.  I went into the gym and took my position on the rocking table and told the physical therapist that I was much tighter than normal and his response was that "almost all of his patients had said that today".  Did he take any extra time with me to work out that tightness? NO! Did he do any extra stretches to help me? NO! He did our normal routine and sent me on my way!

Then I went straight over to my neurologist's office for a follow up.  This is a requirement - we have to do a "follow-up" before we can do another Botox appointment per the insurance company - yay another waste of a $35 copay!  And as my Dr. is reviewing my chart he says "Yeah, its a fluke (or luck) that we did the MRI and found these issues".  WHAT!!!! REALLY??? In my mind, "these issues" are a pretty big deal!!! And probably a big cause of my migraines!!!  A fluke!!!  I mean I don't like doctors recommending unnecessary tests either, but to miss something this big for 2 1/2 years!!!

Same thing with my original chiropractor.  She never did x-rays.  Again maybe not on the first appointment, but after 2 years of playing with my spine, you would think she might be able to feel that something might not be right and that we might want to look deeper than just continue with adjustments!

It just feels like there have been so many times in the past several years that someone might have taken a moment to look at the bigger picture!

So after my appointments last night and after the temporary relief wore off, I could feel the tightness and tension set back in - and I knew last night that this morning would be painful again.  I took my muscle relaxers and my pain meds, as per my doctor's prescription and took an Imitrex to try to ward it off... but no such luck!

I know my body better than any of these people and it's frustrating that I can't get them to listen or understand.  I'm excited to go see Dr. Jones tonight because he takes the time to listen to me and feel out my body a little and make small adjustments to our plan to try to help what I need on any given day!  Best choice I have made in the past few months!!!

New Migraine Journal

I have been having problem keeping track of my migraines and everything in my migraine journal like I was supposed to. Previously I had a 3 ringed binder with lined paper and just expected myself to write in it every day. It wasn't very organized - or user (Kelly) friendly.  I also had a handwritten medication list and the migraine tracker from the neurologist in the binder.

Now I have put my medication list on the computer (it is easier to update when needed - just add/delete a medication - or change a dose and reprint). I have also organized it into 3 sections: 1) Daily prescription medications 2) Daily non prescriptions and 3) Migraine medications.  Under the Daily prescription medications I first list the meds I only take in the AM, then meds I take AM and PM, and then only PM med. Daily non prescription include vitamins and minerals that I take on a regular basis. Migraine medications list the dose and states as needed. I also include the last Botox treatment for reference.  I also try to include the generic name and the non-generic name when I am taking a generic brand, as my doctors usually reference the brand name, but I usually only know the generic name - so this has helped me stay less confused!  Below is a template of what that looks like:

On the next page I have emergency contact numbers - my parents' home, work, and cell numbers.  I once had a reaction to 2 drugs I was taking at work - and nobody had my mom's work phone number (or brought me my cell phone to call her!) and a co-worker called my best friend, and she had her mom come get me from work to take me to the doctor. It worked out fine that time, but made me realize that something so simple can be very important!

After that I have one of those plastic business card holders and I have business cards for all of my doctors, my physical therapist, massage therapist, and chiropractor.  Also one for my supervisor at work.  This is a a mulit-purpose page.  It would be useful in the above situation if someone needed to get ahold of someone on my behalf - and it is helpful for me just to have all of that information in one place.
Next, I still have my neurologist's migraine tracker because this is how he likes to see my progress/problems.

Next I have created an Excel spreadsheet with symptoms taken from Migraine Brain to track many possible prodrome, aura, pain phase and postdrome symptoms - some that may not even seem related.

I have created a daily log.  I used a Microsoft Excel template that was a food/exercise chart and slightly modified to better fit my needs.  The page is front and back.  On the front it has the meals for the day and medications.  There is a spot to keept track of glasses of water per day.  There is a medictaion tracker - both used for daily preventative meds in the morning and night - and for meds taken if needed during the day for a migraine attack.  On the back page is a small spot for exercise.  There is a spot to record amount and quality of sleep, general mood, notes of physical complaints.  I added the weather spot; I have a weather display that shows humidity, temp and barametric pressure.  Finally there is a spot listed Other for any other notes for the day.  This is the second amended copy - a few changes have already been made from the first copy - but much easier to use than just blank paper to try to record what I wanted before!

Last I have blank calendars so that I have a quick reference of when I have migraines in reference to other events, such as massage, accupuncture, physical therapy, etc. to see if there is any association.  Also when I start to work out I will include that on the calendar as well.

In the pockets of the folder I include copies of my test results (MRI) and my FMLA paperwork for work.

Start of P.T.

Tuesday I started my Physical Therapy.
First they did a electo-heat therapy on my neck that is supposed to confuse my brain about whether or not it is actually in pain.  They put little pads on my neck and upper back and wrapped my back and neck in heat pads and then turned on the little pads and they just felt like tingling sensations - that would make my muscles jump. And I just laid there for 20 minutes. It was almost relaxing, except for the involuntary muscles jumping.

Then I went to out to their gym and the physical therapist had me lay down on a table, which seemed like a normal table until he turned it on and it started rocking the lower half of my body.  Meanwhile he stretched and massaged and pushed all over and around my neck.

The last thing they did there was to adjust or pop my leg and hips.  My left leg is "shorter" than my right - my hip is actually up higher than it should be on that side.  So one of the assistants had me lay on my back and he literally pulled my left leg out further.  I barely felt or heard a thing.  Then he had me lay on my back and bend my legs and he pushed my knees outward to pop my hips.  Again didn't feel or hear anything at the time.  But as I was getting down off the table he told me that I may be a little sore later... and let me tell you, it hurt!!!  I was amazed!  But I actually felt like I was walking different, the pressure on my feet felt different the rest of the day!

And by the end of the day when my neck and back are usually really screaming at my - I only really had very mild pain! So definitely a start!!!

Next P.T. appointment is Friday.


After work I went back to the acupuncturist/chiropractor.  He had taken x-rays the day before and those were interesting to look at.  He had noticed the day before the my posture tended to lean to the left.  Well the x-rays showed that from the spot of my bulging disk, my spine does then lean to the left.  Also my neck instead of having a nice smooth c-curve like a normal healthy neck should, mine is a straight line.

I told him all of the events of the the morning and he decided the best course of action for me with him would be some acupuncture, which is what I had asked for, and also neck decompression.  We also talked about adjustments and he had an additional, safer option.  So we gave that a try.

Instead of actually manipulating the neck, he used a little metal device (with a rubber stopper on the end) and basically taps up the spine to still release the pressure without twisting my neck around.  From what he was seeing, he didn't think a normal adjustment would be a problem, but I still wanted to play it safe for now.

Next we did the neck decompression. So right now for me, the best feeling is literally when someone picks up my head and pulls it upward, releasing all the pressure on my neck. I guess that's where the degenerate disk disease and straight spine come into play. So they have a machine that will do that and the goal is to overtime, have the neck re-align itself.  So I lay on yet another table, but this one has big pads that sit under my jaw. And my head is on a board that moves. After I lay down he straps my head in and turns on the machines and it very lightly pulls up on my head and for I don't know how long 10,15,20 minutes it pulls, releases, pull, pulls harder, releases and just stretches out my neck.

Meanwhile, while I am laying there, he also does the acupuncture.  He puts two under my nose to help with sinuses. One between my eyebrows to help with overall mood.  And then one in my hand, one around my knee and one in the top of my head which were headache/migraine/pain related.

After the needles were removed and I was released from the machine, (I felt amazing from the neck machine!), he put me on the electro things similar to this morning only without the heat and explained that after the neck decompression it was a necessity and that some people will feel sick after the neck decompression.

I go back to see him on Thursday.