Horrid Migraine This Morning :(

Woke up sometime during the 5 AM hour.  That's all I remember or could see... it was after 5:00 AM and before 6:00 AM.  Any my head was pounding!  On a scale of 1-10 I easily give it a 10.  I wandered aimlessly around the house looking for my med bag, which ended up being in my room to begin with!  Also grabbed an ice pack.  Took Imitrex, my anti-nausea pill, and two different pain killers - and NSAID which is supposed to help the Imitrex work better and a stronger prescription pain killer.  The anti-nausea pill was because yes, I was nauseus.  Before I was able to start my venture through the house to get the ice pack, and meds, and water, I first had to sit down as soon as I got out of bed.  I get nauseus often, but usually don't really feel like I will be sick - this time I did :(  I wasn't thank goodness.  I went back into bed and could not get comfortable.  And my bird friends, who I normally don't mind singing at my when I wake up so early, were up singing at me.  It took a while to get back to sleep unfortunately - for a while I was nervous if I would even be able to.  But I did, because I woke up feeling much better about 9:30 AM.  Not sure what triggered this one - no bad weather overnight.  I did get a steroid shot yesterday at the doctor's for an inner ear infection - so that is a possibility.  I also ate sourkraut at dinner, which is a "common food trigger," but depending on what you read, I've heard food triggers only effect people for 2 hours from the time they eat the offending food...

Worried!

My eyes are starting to make me very worried!

Friday I missed work because when I woke up my vision "went out" - black spots - whenever I stood up - and it was accompanied by pain in my eyes and a circular pain around my head - like if you are wearing a hat that is much too tight.  And I would get a stream from my neck up into my head of "emptiness."  I'm not sure how to describe it.  It was a lack of concentration; a fatigue feeling; a sense of emptiness in my head (and I mean physically - not an emotionally feeling).  And this continued all day, every time I stood up - once I sat down it would pass and I would be ok.  And as the day progressed the severity decreased until by the end of the day it pretty much stopped.  Granted I also slept - a lot.  I slept in until about noon.  And then went back to bed for a nap about 4 until 6ish.

Saturday morning I experience the same thing again mildly, but it quickly passed.

Saturday night, I talked to a neighbor who is an eye doctor and asked to picked his brain.  He said this does sound like it could be an aura, but the only when standing up - could also have to do with low blood sugar and asked if I had been eating much.  Well, taking Friday as an example - that answer is clearly no, not with all the sleeping I was doing!

Sunday morning I wake up and it is even worse than Friday - when I first get up it is about the same as Friday, black spots.  I sit down and get a large glass of juice and a large glass of water.  If it's low blood sugar or dehydration I'm going to beat it!  After a glass and a half of juice and a an English muffin with cream cheese and jelly - I am already fatigued and go back to bed.  I get up about 2 hours later.  I go out to the dining/living room to visit with my aunt and cousin and they offer me a bagel.  I take my glass and my plate and suddenly my vision is completely gone - I can see nothing.  It is black and purple.  It is like you are in the light and suddenly someone turns off all the lights and it it pitch dark.  And at this point I do get slightly dizzy.  My eyes hurt.  My head in that same circle like a tight hat hurts.  My mother comes over and takes the things out of my hands.  I had put my forarms on the two backs of the chairs in front of me to hold myself in place.  She offers to take me back to bed and I say no just let me be.  In a few moments I can make out the shape of the arm of the couch and I make my way to it.

Over the next 5 to 10 minutes, I get my vision back.  First it is shapes - I see the shape of the TV and the TV stand.  The shape of the couch across from me.  The shapes of the window.  And then colors start to come back.  The first color was the dark brown TV stand and then others.  The last color to come back was the color of the sky.  When all the other colors were back, it was still a very bright bright white, but I couldn't make out the distinguishing colors of the sky - the clouds, where the leaves on the trees actually ended and the sky began (think in the movies how they portray the "bright light" or when God or Jesus appears and it is just a that STARK white - this is literally what I was seeing).

I have my new neurologist's appointment Tuesday and I called my eye doctor and was able to get in on Wednesday (just to cover my bases).  So hopefully we may be closer to some answers (or at least elimintating some things).  Up until this weekend I was (perhaps naivelly) convincing myself it was definitely an aura and migraine related because I don't want any more problems.  It's scary to think I have more issues and more problems to think about (especially if it's blood sugar related!), but I'll hopefully know more in the next 72 hours!

In more normal news - I woke up with a plain old normal migraine this morning.... I guess normal is better than everything else at this point.  Is it bad I'm excited about that???

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.

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.

My Cave

I found that one of the extremely important things is to have a comfy place to sleep - both to get a good night sleep every night, and to sleep during migraine time.

I have room darkening window curtains from JCPenney's?  These are great because I get super light sensitive during migraines and this keeps the light out!!! Hense the term "my cave".  I can never tell what the weather is like (sunny, dreary, cloudy, etc.) before I actually open the curtains.

I bought a Dream Therapy Memory Foam from Kohls.  Mine is only 1.5 inches think - thin enough to still fit under my sheets, but think enough to provide extra comfort.  I am a side sleeper so this helps me keep my shoulders under me (instead of sliding them slightly forward or backward) and still be comfortable enough because they have somewhere soft to go.

I also have 3 pillows to pick and choose from depending how my neck is feeling and how much support I need.  First I have a firm contour pillow.  Next I have a medium U-shaped pillow that is great for keeping the back and neck alighned.  We bought this at Bed Bath and Beyond for $20. Third I have a soft regular pillow.  I normally use the U-shaped pillow, but depending on the night, I may use a different one, or switch during the night.

New Plan of Attack

Went and spent 2.5 hours with my neurologist yesterday.
I got an EMG done. If you've never had one (or never heard of it, like I hadn't) let me explain. It is a test to see how the nerves and muscles are reacting.  So they put little metal tabs on my hand and then shocked different places up and down my hands and wrists and arms and the machine was recording the responses. Sometimes it just made my hand jump - sometimes it actually hurt a bit.  Then came the muscle part - they kept a few of the metal tabs on and then took a needle that was also attached to the machine and would stick that into different muscles up and down my arm and then make me push against the doctor to work that specific muscle. This one tended to hurt more! But overall he said the results looked good!
We went over the MRI results in more detail from earlier in the month and (especially after my muscle test) he said I could start doing normal activity; some light lifting - no helping anybody move or anything like that. He suggested the epidural shot (which I supposed is the cortizone). I asked about physical therapy - so we have decided to try that first. I also asked about trying yoga to help stretch out my neck and shoulder muscles; he suggested waiting on that for now because some of the poses could potentially hurt my neck. He did think pilates might be better (going back to the building muscle thing).
He also was concerned about my stress level. I told him (and the nurse) that I get migraines, I miss work, I don't get paid, I don't have money, I get stressed, I get migraines - I'm stuck in a endless loop. The both laughed, but know it's true. He suggested seeing a psychologist to help with my stress level and also prescribed a anti-anxiety med that will help with the stress and also help sleep!!! Maybe I won't wake up at 4am several nights a week - that will be nice!
Next Botox appointment is set for June 7th - hopefully it will help even more this treatment - and hopefully by then these other steps will improve my neck/back.

So recap:
Start physical therapy - 2x a week for 6 weeks
Start working out (perhaps pilates - no yoga)
Continue with massage therapy
No chiropractor - at least not neck adjustments - only lower back
Start accupuncture (this was my own decision - have an appt on Mon Apr 30)
Strongly consider psychologist for stress management

Meds:
Added Naproxen (Stronger NSAID) 2x daily for constant neck/back pain
Added Elivin at night for anxiety/stress/sleep
Continue all other meds
     Zalaflex - muscle relaxer - at night
     Topimax - migraine preventative - morning and night
     Dolovent - specialty migraine vitamins - morning and night

Oh and most important - I am re-making my migraine folder/diary - so it is more Kelly friendly! I have been very lax in using it consistenly :( Shame on me.  So that is another big action step!!!

I also got my weather meter set up! It has inside/outside temp and humidity and barameter so I will start keeping track of that as well in my new migraine folder - once that is set up!
   

It just won't go away!

Today was horrible!
Woke up at 6 with a migraine, but since it's Sunday I just rolled over to go back to sleep.
When I woke up around 9:30 or so I was feeling significantly better.
Decided I was ok to run errands with my mom and sister. Well errands took longer than expected and I broke cardnial rule #1 - Went out without my meds :(
While shopping (about 1), I came down with a migraine. By the time we got home, I was almost in tears. I took my meds and went to lay down in my "cave" - my room.  After an hour of maybe some dozing but not much sleep (stupid neighbor mowing the lawn and sister's dog wanting attention), I tried to join the human race again, and I was feeling better.
A few hours later, around 6.15, it was back, yet again! Some more meds and 30 minutes in my "cave". And I was maybe 50% better, but had to give the little one a bath and dinner and ready for bed.
I took my muscle relaxers, which do a great job at making me sleeping after an undecided amount of time and I fully plan to take a Melatonin before bed to help me sleep through the night.
Right now, I'm better again. The muscle relaxers are kicking in - my eyelids are rather droopy - I'm going to push them a little further to ensure good sleep! (and hope this is the end of it and tomorrow really is a new day - not a continuation of my misery).

Is the Botox Working?

So on Feb 29th I got Botox injections to try to help with my migraines. I think overall it is helping. With the exception of this week, I have been having fewer migraines and have not had multi-day migraines. This week has been pretty bad though. I talked to the nurse at my neurologist office yesterday and she said that everyone she has talked to has had a horrible week with some of the worst migraines; the general consensus is the weather!

The other "benefit" of the Botox is I have found I have additional problems with my neck.  I have had neck pain for some time, usually on and off.  But once I got the Botox, it was everyday and very intense.  Since the Botox was also injected into my neck (and hence numbing those muscles), my doctor decided to look into it further and thought I may have disc problems.

After an MRI, we found out I have a protuding disc between my shoulder blades, stenonis (narrowing of the spinal canal), and degenerative disc disease.  My neurologist is going to be doing an EMG (Electromyography) to find out if there is any additional nerve damage before we start any plan.  This will be on April 25th.  Does not seem at this point that my doctor thinks I will need surgery; possible cortisone shots, hopefully just physical therapy!

I am hoping that if we can fix these neck issues, it will help with the migraine situation - so the Botox may be even better for me than the normal uses to reduce occurrences of migraines, reduce frequency and allow medications to work better.  For me, it may have helped find an underlying cause!!!

In other, semi-unrelated news, I have a finally made an appointment to try acupuncture!  April 24th.

Midnight Pain

I never used to wake up with migraines.  Prior to visiting the neurologist - I would only ever start to get migraines in the mid afternoon.  This change in pattern is one of the reasons I started seeing the neurologist.  I have never woken up because of the pain, but I have woken up with pain - or been woken up and realized I had a migraine.  For example, kid comes in in the middle of the night and wake me up and I have a migraine.  Or last night, when my boyfriend came home from work at midnight, I woke up to the sound of him coming to bed - like normal and the pain was so intense I don't think I even picked up my head to kiss him.

I started reading a book yesterday The Migraine Brain (recommended by my neurologist).  I have already read 3 chapter - very good information!  One of the things I have read so far is that people with migraines know when they are going to get migraines even if they can't explain why or how they know.  It gives a list of things to specifically look for - common symptoms that people experience before migraines to help you identify when a migraine is on its way.  These symptoms can start anywhere for hours to days before the migraine starts.  Last night as I was getting ready for bed I had that "know" sensation that I was probably going to have a migraine when I woke up (didn't expect it at midnight).  The only symptom I specifically remember was a stiff neck and that I could not pop my neck on my own (usually I can pop my neck).  Before bed I didn't get up to take my meds, which may have been part of my problem.  I have been reluctant to do so because my insurance will only allow me 9 per month - so I don't want to "waste" them if I am not actually having a migraine.  But I may be actually causing more problems.  Reading from this book, it explained better how the triptans (migraine meds) work.  They are not pain relievers.  A migraine is a chemical change in your brain.  The triptans actually work to counter the chemical change to get the brain back to normal.  The earlier the triptans are taken, the better - like in that beginning "know" phase before the pain sets in.

So continuing with last night's ordeal.  I did manage to get up and take my meds last night and go back to sleep.  When my alarm went off this morning at 6 - still extreme pain (this sucks!!!) took more meds, and set alarm for 7:30 to take the lil person to school.  Had to get up at 7:30 with that alarm.  I hate that even my daughter notices when something is wrong.  Took her to school and came back home and crawled into bed.  Woke up around 11:30, but still laid in bed until around 12:30 - not ready to get up yet.  The throbbing was gone, but still had lingering pain.  Over the past few hours I have moved into the "hangover stage".  Tonight I do have a massage and chiropractor appt scheduled.

Also I did order a weather reporter thing last night - it reports indoor and outdoor temp and humidity and also barometric pressure.  I am going to start keeping track of these to see if changes have an effect on my migraines.  This should be coming in the next week to two weeks.

Gotta Start Somewhere

I have been suffering from migraines since Junior Year of High school.  (I'm now 26.)  I distinctly remember I would get them during 7th hour Physics and they would last 24 hours - until 7th hour Physics the next day.  I would come home and my parents would see "the look" and I wouldn't have to say anything - they would know.  I would go up to bed - usually sleep all night.  Over the years the patterns have changed.  For a while in college I would actually vomit from them.  Happily this has not happened for a few years although I do still get nauseous.
Last February (2010) I started seeing  neurologist for them for the first time because my absenteeism from work was starting to affect my job.  I am on preventative medication.  He wants me to keep a food diary because he strongly believes I have food triggers.  I am less convinced - and have been avoiding this for over a year now.  I work full time, have a 1st grader, my boyfriend has a 3 1/2 year old we have 4 days - I just don't see how writing down every food I put in my mouth fits into my schedule.  However after a year and a half I am finally relenting and going to make an honest effort at making some real changes to try to take control over my migraines.
My dad had migraines when he was younger and he did outgrow them!  So I'm crossing my fingers that one day... but until then I don't want to continue to suffer!
I have been seeing a chiropractor and massage therapist fairly reguarly (at least monthly) and I do notice that the more consistantly I see them, the better my head is.  I have known for years that I hold a lot of my stress in my upper back, shoulders and neck and when those get too tight - my migraines start.  So I do know that a trigger for my migraines is body related (one reason I am hesitant with the food diary).  I also know they can be related by the weather.
My boyfriend used to be a physical thearpist assistant, so he has been helping me with some stretches and exercised to keep those muscles loose also.  I have been doing them a few times, but need to be consistant with doing those every day.  About 2 weeks ago he helped me make the realization that Junior Year was when I stopped playing High School sports (when I stopped consistantly working out all the time) - so I need to make it a priority to start a regular workout routine. 
I need to find an easy way to start recording everything - and that is the most daunting task for me.  Because without that I am not going to be able to find out what is or is not working.  So making changes won't be helpful.