It hurts so good

ANYONE ELSE HAVE THIS? I have been getting this feeling where I just NEED to have my hair pulled, and hard. (no S&M guys, I promise. lol) The feeling of having my hair pulled all over my head is such a release and almost like having a head massage. Usually I can't have lots of head touching because of my Trigger Point Syndrome along with the ON. But lately I want it the other way around. I was doing it to myself for a while and then I finally asked Scott to do it for me. You should have seen his face when I asked him the first time. lol. But oh man, it feels so good yet is intense. Or as my physical therapist says "It hurts so good".

Another Migraine.

had one of the worst migraines of my life this past Thursday. Oh my goodness it was awful. once it hit full force I couldn't lay down, I couldn't sit, standing made me crazy. I was pacing, laying, siting, repeat for what seemed like hours. Just when i was minutes away from going to the ER my next imetrex kicked in. Luckily I was at my moms to pick up the kids so I was able to stay and sleep while she continues to take care of my children. I slept all day long. The icky thing though is that i haven't felt myself since Thursday. no migraine, that passed thank goodness. But I do feel just icky, tired, and achier then usual. sucks.


July 6th Update- I am feeling better today, but it took me almost a full week. I was so afraid I went back to square one before I went on my new medications in December. Thank goodness it wasn't the case. My body just needed extra healing time I guess.

Still not right.

Such a bummer.  I think I will be changing my meds when I go see Dr. D next week.  My carbamazepine was working really well for quite a while.  And in some ways it still is.  I no longer have my 24/7 headache.  Truly amazing to not live with that anymore! But now my electric shocks are coming to me all day long.  Sometimes they each last a few seconds but more and more often they last me way longer, or are back to back to back.  We went up to the very highest possible dosage at my last appointment, so we are not able to increase it any further.  Something is not quite right with me and this medication and I think we need to look at something else.  We are on the right track, but still not quite all right.

I am nervous.  I know that there are hundreds of meds out there to try, but I am finally used to these side effects.  I know how my body reacts to them and I am dealing with it.  My family is getting used to my forgetful brain and my new occasional stutter.  Now I will have to start all over.  it is a daunting feeling.

The Best I've felt in YEARS

About a month ago Dr. D upped my medication dosage due to the increased head and facial pain. I am now at 600 mg twice a day.  This will be my last upping on this particular medication.  I can't go any higher.  If this doesn't work then I need to try something new.  I also complained about my weight gain, and she said that sometimes it happens until your body gets used to the medication and then you taper off. 

Well last week I went for my 4 week check up and it was so great!  I am still getting lightening flashes, but they are farther and fewer between.  I can clearly say that I have not felt this good in FIVE YEARS!  woot!!!!  I am not perfect, but doing so much better.  I have had one really, really bad breakthrough pain within this past 4 weeks.  There was a bad storm and the barometric pressure changed (one of my triggers).  The advil wouldn't shake it one little bit.  I had to take a hardcore pain pill I had left over from my ER visit and go to sleep for 3 hours to begin to feel better.  When I woke up the stiff neck, trigger point pain was back.  I talked to Dr. D about it at this last appointment.  She finally agreed to give me emergency pain pills and also a muscle relaxer to help in these bad times.  I hope to never need them, but I feel very relieved knowing they are safe in my closet if I do.

Oh!  And I have lost 5 pounds!!  I actually did a little cheer  when I stood on the scale at the office.  The nurse laughed at me and said that she doesn't get that all too often.  It looks like my hard work reducing carbs is working.  That and also my body might finally be getting used to this medication.  Very cool!

I actually am beginning to feel like a normal person again.  WOW.  You have no idea how bad your conditions were until they are fixed.  I am so greateful.  It sucks to have a diagnosis that may follow me the rest of my life.  But it makes it not so bad when I also have a great doctor and medication to help me (almost) forget about it.

The Good, The Bad and The Ugly

The Good
The good news is after being on my upped does of medication (tegretol 400mg 2xs a day) I am thrilled to say I have been 90% pain free or just very, very low pain days for the past 7 days.  It is amazing!!!  I can't even begin to explain what it feels like to wake up in the morning and feel awesome, go all through my day  feeling awesome, and then going to bed feeling just as awesome!  For lack of a better word it is AWESOME.  I forgot how nice this is.  Nice is an understatement.  I feel positive and ready to conquer the world.  I have more skip in my step and feel like I can do so much more in my day.  I am still trying not to over do it because Dr. D said to watch my activity levels on "Good Days".  I have a tendency to over do it and then pay for it with a really, really bad day after, and day after that, and so on.  She said I need to ease into my pain free, low pain days.  So I have.  And I keep waking up feeling great.  Although I keep waiting for the bomb to drop and a major migraine or ON attack to show its ugly face.  But so far I have been in the clear.  Prayers that we finally found the reason for my CDH and I can be good from this point forward!

The Bad
I say 90% because I do occasionally get my ON electric shocks, but they are fewer and farther between. I can't tell you the last time I had to take an advil to dull the pain making it possible to last through my day. It's cool right?!  Well, this past weekend I was super duper busy, my son had a doctor's visit to schedule a surgery on a blocked tear duct on Friday and i accidentally missed my morning dose of meds. Saturday all day I was busy making a picture collage to celebrate my sister's 40th birthday that night, so again I forgot my morning dose.  So unfortunately that night I was all out of wack.  This was the first time I truly felt any real deal side effects.  I had nausea, dizziness, and all over spacey-ness.  It was just plain weird.  I didn't feel myself at all.  It was my sister's 40th birthday party and I was so excited for her and I wanted to be there for her more then anything.  So I pushed through it and had a nice time.  But I really wanted to have a crazy great time!  Truthfully I would have rather been in my bed.  How much does that suck.  So now I know never to do that again.  I will not only be the girl with the morning and night time 7 day pill boxes.  But I will also never go anywhere without a spare dosage incase that ever happens to me again.

The Ugly
Just a few months ago I went on the South Beach Diet to finally drop the rest of my pregnancy weight- probably some of it left over even from my first to be real honest! lol.  I did it and really felt good about myself on the outside again.  No more tummy, my face was thin, it was like the old days and I was sooooooo proud of myself.  17 pounds gone, down 2 pants sizes and almost down one more. Now meet my lovely little Tegretol.  When I started my meds I was thinking "Now I am skinny and pain free!  Rock on!!!"  I am crazy thrilled to be pain free- or at least pretty darn close.  It feels incredible.  BUT (there always has to be a "but" doesn't there...) I am also noticing another side effect.  The worst in my opinion.  The dreaded weight gain.  UGHHHHHH.

I just worked so, super hard to get those 17 pounds off and now I am slowly seeing them creep back on. What good is it to be pain free if I feel like shit on the outside?  I feel fat, self conscience, and just so, so disappointed.  It sucks.  I am definitely bringing this up with Dr. D when I see her in a few weeks.  I have read how some never notice any sort of weight gain while other people gain something like 40 pounds on these kinds of meds.  Of course the only side effect I am noticing is the shittiest one.  So. Not. Fair.  I don't care if I sound vain.  I don't want to take a pill that makes me fat.

Even if it takes my headaches away.

one poke vs. another

I was talking to one of the girls in my support group and after listening to her recent treatment I think Dr. D actually wanted me to get a supraorbital injection, because that is what she was explaining to me in her office and why she was sending me out to the optical neurologist. Dr. D said these are right above the eyebrow and hit the trigger points there.  Well the optical neurologist gave me a nerve block instead in the back of my head instead. I wonder how different the two of them actually are? Hmmmmm.  The girl from the support group said that the nerve blocks never really did much for her, but the supraorbital injection hurt like hell getting it, but she felt a lot more relief since most of her pain is located directly behind her eye.  That is where my pain always was, that is until my new meds.  Now the eye pain is almost 100% gone, but now I have a lot of back of the head pain still....  guess I don't need it now, but a little annoyed that I got the wrong treatment to begin with and that the stupid nerve block gave me so much "angry" nerve pain.  I am wondering if that means I could never get another nerve block using a different medicine or if there is something else that could be used back there.  I had good luck with lanacine in my neck.  I wonder if she could use that? Hmmmmmm.  Stuff to think about and to bring up to Dr. D at my next appointment.

And you know what, that neur never gave me any anesthetic in the nerve block at all.  Just the steroid. From what I read this is very, very uncommon.  Many injection treatments begin with anesthetic and if that works then they try the steroid at the follow up nerve block.  And almost all nerve blocks include BOTH the steroid and the anesthetic.  No one I have spoken with that has had this treatment had it like me.  Sounds like he didn't follow protocol for this particular treatment.  Jerk.  Thanks a lot.

Isn't going to the doctor how YOU choose to spend your birthday?

Happy birthday to me! So I got to see my doctor today- isn't that what everyone chooses to do on their birthday- go to their doctor?! lol. It really was a great visit, though. I always leave her office feeling so positive and with so much hope. I ♥ her. Anyways, she is upping my tegretol and decreasing my beta-blockers (which I take as preventatives for my migraines). She thinks I wont need the beta blockers since I am on tegretol. Fingers crossed that I don't get dumb, can't spell and get migraines all at the same time!  

It looks like I am having increasing tension and pain in the muscle in the back of the head, the same one that controls your eyebrows and forehead.  When this muscle is sore and inflamed it is triggering nerve pain in the side and back of the head.  She gave me a 2 week rx for Naprosin to get the inflammation down.  I go back to her in one month for a follow up.

Both of my kids go to a different doctor at the same family practice. The one they usually see has always made me crazy. I always got the feeling that she and I could be friends if I never met her in the office. But as a doctor of my kids I never really liked her. She just kinda rubbed me the wrong way.  I mean, how many doctor's that deal with children don't know how to put a diaper on a kid?!  Or never ask about milestones.  Or really just seem flighty in general.  maybe we wouldn't be friends..... Anyways, I was in the process of looking for a new pediatrician at the same time I was going to start searching for a new GP for myself. Low and behold that is when Dr. D arrived at the office. She not only specializes in women's health, but children as well. If that isn't a sign I don't know what is. I officially moved myself and both of my kids to her today.  *two checks off the BIG list!

Tracking my Carbamazepine increase

January 5- Today I do my big increase of my anti seizure meds. Nervous I am going to turn dumb :/

January 9- Well I have been on my increased meds for 4 full days- today being the fifth, and I feel SO much better. I think my doctor finally found my condition and the right med to treat it. Friday I actually had a PAIN FREE day! I have never had one of those except during the time I was pregnant (I promise I am not preggers...lol) Granite, Saturday I had a pretty good headache most of the day, shooting in and out. But then Sunday's pain was hardly noticeable. So I think my meds are really starting to do their magic. I just need to remain patient and stay positive.

January 12- I have decided to make this blog public.  I need a place to vent, someplace for my family to really understand what I deal with on  daily basis and what my strange diagnosis means, and why I have to see my doctors so much.  Plus now i have a way to track everything more accurately (goodness knows how much I suck at my headache journal....)

Follow up with Dr. D and an Official Diagnosis

December 28- I had one of the best visits with my doctor today. Lots of talking and testing. She is amazing! After not being taken seriously for so long, I can't stress how much I appreciate her! Looks like I do indeed have a form of Occipital or Trigeminal Neuralgia or both!). I asked her about what the Optical Neurologist said, about the nerve block not working if I didn't have Occipital Neuralgia. My pain has been increasingly worse since the injection, not better. So what does this mean?! She that that basically I have an angry nerve (Grrrrrrr!).  It didn't "agree" with the type of injection and is now mad and lashing out at me, causing more increased pain. This is I guess another way of knowing that the shot did something proving I do have the disorder. If I didn't have it then the shot would have done absolutely nothing at all.

So I am trying out a new medication starting tomorrow to start relieving my nerve pain and will be slowly weening off my beta-blockers.  She wants to see if my migraines come back off of them or if my pain is primarily nerve related. Nervous but hopeful!  We have a plan of attack! (Hi-Ya!)

I think I am mostly nervous about going off the labetalol. I didn't need it while I was pregnant this last time; guess my hormones fixed my issues. But once I gave birth I had the most crushing migraines that I just couldn't shake. I can *almost say my migraine pain was worse then my c-section pain. The house doctor put me back on the labetalol, I had one more migraine and then I was back to my normal 2/3 daily pain level. Dr. D says that I will be seeing her regularly, so I won't be left in the cold in serious pain if i need it still, or something else better.

Anyone familiar with Carbamazepine? That is the new med she is putting me on. It's an anticonvulsant. Actually now that I think about it, I think it is the same stuff my crazy college roommate took for her epilepsy. FYI, It wasn't her epilepsy that made her crazy, I think she was just crazy naturally... accused me of stealing her stuff, would flip out on me for no reason, oh goodness a whole mess of stuff. But enough about her, yuck. So anyways...

Dr. D wouldn't prescribe me any pain pills right now. She said that if this is indeed all nerve related and that I did have this neurological disorder, then this medication would work as a pain pill, so to say, on the over-reacting nerves in my head. I hope she is right, because my pain level (even on my beta-blockers) has gotten up there again. My daily pain is now closer to a 5/10 and taking 4 Advil many times doesn't even cut it.

Along with my 300 mg of Labetalol, I will start out on 100 mg of Carbamazepine once a day for one week and then jump up to 200 mg twice a day after that. I am then scheduled to see her again in two weeks to discuss my pain levels, how the new stuff is treating me and then to work out a schedule for going off the Labetalol. She says that the Carbamazepine is a low does, so not to be surprised if I need to increase the dosage until we get things just right. She really wants me to be a "one pill girl" and not need to take all sorts of things to feel "normal". Oh goodness I hope she can do it!  We shall see.

My neuro was kinda jerky. Oh and I got a shot in my head. OUCH!

December 19- ugh, woke up today with a pretty bad headache. It is usually bad news when I wake up with a bad one, and generally turns into a migraine. I am sure it is stress of my appointment , plus my little one was up more then usual. I have found that when I don't get enough sleep I my headaches increase. Praying for some much anticipated answers today!

December 20- I had my first Greater Occipital Nerve Block done yesterday down at the Cleveland Clinic. I definitely had more relief from the trigger point injection my own GP did in her office than in this nerve block. I honestly don't think it did anything except cause me pain in the back of my head.  Right now I am just sore at the injection site still. I am wondering how long it will take for me to notice a difference?

OK, so my appointment was FINE. I sat and waited A LOT. They did a million eye exams, dilated my eyes and then did more exams. After 2 hours of being there, Then the actual Optical Neurologist came in, listened to me describe my pain and told me that I do indeed show examples of Occipital Neuralgia, but not completely. He gave me a steroid shot in my occipital nerve and if it works then I have a form of Occipital Neuralgia and I will need to go back every 3-6 months to get this shot. He said that the majority of my symptoms sound like a condition called , get this, CHRONIC DAILY HEADACHE. Uh, yeah. I felt like face-palming. I wasn't crazy about the care that he gave me. He didn't explain anything, give me any advice, or tell me what to expect. All he did was tell me "OK, I am going to reassure you, this isn't going to hurt ME at all!". Thanks a lot jerk. He told me that I should actually be going to the Headache Center here at the clinic and gave me a name to refer to. Told me that I should be changing my medication to something that more accurately and better treats CDH. Unfortunately it is a neurological condition and one that I will have to live with but with better pain management.

To say I was disappointed is an understatement. I guess I was hoping I he would find an explanation for the headaches. Why one day I just woke up with one and it never went away. Why?! It seems like there should be a reason for all my suffering, don't you think? My next step in treatment is looking at my sinuses some more.... I have 2 more days on my antibiotic to see if my sinus infection clears up. If not off to the ENT I go for probable sinus surgery.

Thanks to a suggestion from a friend on my Support Group, I put ice on it last night and wow, that fell good! The Neurologist told me that the shot was either going to work or not. No in between. I am thinking that it didn't work on me. I still have my headache behind my eye like always, and he did say that if the shot worked it would at least relieve that. UGH.  We will wait and see....

I found her!

September 27- The strangest thing happened this morning.  I was bending over to pick up a toy that fell under the couch.  I stand up and immediately have the most horrible migraine headache.  It came out of absolute no where!!!  All I did was bend over!  Now here is the real strange part: if i don't move or don't cough my head doesn't hurt.  The moment I turn my head even a smidge there is the pounding migraine pain.  If I cough I have to hold the back of my head because I honestly feel as though my brain will explode out of my skull.  And of course i still have that bronchial infection so I can't help but cough.  This is a bit scary.

So I ended up calling the doctor and of course I wasn't able to get in to see my own.  Story of my life.  I am at the end of my rope with this place.  I seriously am thinking of looking into a new doctor's office.  They tell me there is a new woman doctor that just started there and she is available. Well, it is either her or the guy who swore there was no way I had a sinus infection in July and sent me home with sudafed.  Sure enough, two days later I am back in sick as a dog to get a zpack finally because I was so bad.  Ugh, did I mention how much this place pisses me off?!  Ok, so I agree to see the new female GP.  I have no real choice I have to see someone.

God was really watching over me today.  He knew I needed a new doctor, but for my head pain/ chronic sinus pain- but also for my mental state. I didn't have time to waste, and he gave me Dr. D. (I am still not sure if I should use any of the doctor's real names here.  So right now I am just using their first initial.  email me if you want real referrals...)  Today I found the doctor who decided there is no way that I should live with CDH for the rest of my life.  She made it seem like even the thought of that was absurd!

Having an actual living person, let alone a doctor say this seriously made me cry.  Unless you have lived with chronic pain yourself you will not understand the feelings and emotions that washed over me that day.  And not only did she SAY these words, this is were I feel my real journey towards healing began.

What I thought was going to be a quick, give me meds, fix me up, send me home appointment, turned into a full 5 hour day of tests: CT Scan of my sinuses, X-Rays of my brain and spine, prescription for some new harsh, super strong antibiotics to clear up my sinus infection, a referral to a physical therapist to bring back movement in my neck and a shot of lanocaine in my neck to relieve the ridiculous migraine attacks stop.

And honestly the very best part of the appointment- she sat and really and truly listened to every single word I had to say.  She listened to all of my symptoms and pains from beginning to end.  She listened to my stories of migraine onset, how the birth of my children started all of this.  How I can't wash my hair upside down anymore or I get a migraine, or flip my head to dry my hair with a hairdryer.  How the change of weather and especially the humidity change or what I learned, the change in barometric pressure can send me reeling to the emergency room.  She listened to me for over and hour, like a best friend over a glass of wine.  Only there was no wine and she and I had only just met.  But already I loved her.  I felt as though I was finally 100% being taken seriously and that she not only heard me but really and truly wanted to help me.  When she said that she swore we were going to get to the bottom of it I cried.  Again.  She didn't just write me a scrip and send me on my way.  She wants to help me.  For real.

As far as what in the heck was going on with my neck, well that was a Myofascial Trigger Point flare up.  There are many, mnay trigger points all over your body. This explanation on the site Life Extension says it well:

When a physician pushes a trigger point in MFS, the trigger point elicits an involuntary "twitch" response. Additionally, the patient may report pain that radiates to an area away from the trigger point itself. This is what is considered "referred pain." The painful trigger point area is in the muscle or the junction of the muscle and fascia. Hence, myofascial pain is usually associated with a taut band, indicating a "ropey" thickening of the muscle tissue.

The fascia is a tough connective tissue that spreads throughout the body in a three-dimensional web from head to foot without interruption. The fascia surrounds every muscle, bone, nerve, blood vessel, and organ of the body, all the way down to the cellular level. Therefore, malfunction of the fascial system due to trauma, posture, or inflammation can create a "binding down" of the fascia, resulting in abnormal pressure on nerves, muscles, bones, or organs.

Much of the pain that accompanies MFS is due to inadequate blood flow to the trigger point area (ischemia) that inhibits the ability of the muscle to eliminate metabolic wastes, such as lactic acid and potassium. These accumulated metabolic byproducts combined with inadequate oxygen flow to the affected area then build up, stimulating nearby nerve endings that lead to trigger point pain.