Sunday, January 22, 2012

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.

Friday, January 20, 2012

It's like a caffeine buzz, minus the actual caffeine...

You are up super duper late and wake super duper early, or maybe you just drank waaayyy too much coffee in a short amount of time....You know that feeling you get in your head where it is just swooshing around a million miles a minute, you feel like you just need to give it a good shake to settle it down, but of course that does nothing.  You feel like you could talk and talk and talk, about, well nothing really.  But yet, you have so much to say... THAT is how I feel today after my third set of increases on my tegretol (Carbamazepine). I have jumped up from 200 mg twice a day to 400 mg twice a day. I definitely feel that this was a good plan of attack because I could tell the medicine was working, but not yet to it's full potential.  We'll see how this turns out.  I didn't have any weird side effects last time, but this time I definitely feel super speedy. Even as I type this, my fingers are going way faster then i can even think.

Thank goodness for spell check.

Thursday, January 19, 2012

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!

Tuesday, January 17, 2012

Yes and No.

So after watching about a gillion videos on youtube about Trigeminal Neuralgia I am about 98% sure that I don't have it.  That's a good thing!  I don't have the kind of pain that all of these people are describing.  Although I do live with daily chronic head pain, I wouldn't describe it at all like the way these doctors and sufferers do.  Their pain is excruciating and completely debilitating.  They can hardly eat or brush their teeth.  It hurts to wash their face, etc. etc.  Although I do notice odd things; yesterday while putting on make-up my cheeks felt like they had sunburn on them after rubbing with my powder puff (I am still pale as snow white), or while brushing my hair with a bristle brush, my scalp is sore and feels like it burns a bit.  I couldn't say that it is excruciating, just strange and uncomfortable for a little while.  But then again I am feeling this while on my meds so maybe it is decreasing the pain?  Maybe my trigeminal nerve is inflamed or something, but I don't think I have this full blown condition.  *phew*

I DO agree with Dr D's diagnosis on Occipital Neuralgia though. After my all of my research and study, all the youtube videos and countless conversations with other sufferers on my ON support group, my pain is just like theirs.  It isn't as severe as some and more then others.  But the locations, and type of pain is like listening to myself.

My medication seems to be working really well over all.  I don't have all day, constant pain as I did before the change.  Actually today and yesterday I have had hours of pretty much pain free!  It's amazing!  I am pretty sure that Dr. D will want to increase my dosage because even though I am having good days, I am having many bad ones as well.  It seems like just as I get my hopes up, I'm feeling great and think "This Is It!"  And then I have follow up days of yuck.  Maybe I am still adjusting to the meds, who knows.

Tomorrow afternoon I go for a CT Scan to follow up my sinus's and then Thursday I see Dr. D to discuss everything.  We'll see what happens.

Monday, January 16, 2012

Still Happy After all These Years

I had been avoiding making a blog like this for some time.  Not because I didn't need a place to vent, share and record my pain/treatment- I did! But I didn't want to come across as a Wendy Winer, a woe-is-me, lets throw a pity party kinda girl.  I am happy!  I really am a positive person.  Anyone living with chronic pain will tell you that they keep most of their daily pain levels inside and try to push through the pain.  No one wants to live bedridden, missing out on all the fun, or to be known as The Girl With The Headache (or fibro, RA, etc.  fill in the blank with your own chronic illness).

I have two amazing children and the most loving and understanding husband.  I would give anything for them!  And so I do just that.  I push, and push, and push my way through the day.  I don't want to miss out on a single thing that my family has to offer.  I love my life- all except the head pain and neurological disorder of course.  But it is a part of me now.  Like I said in my first post- it is my new normal.  These illnesses have no "cure".  Yet.  I am still remaining hopeful.  So now I just need to find the best way to deal with it.  Just ignoring it and shoving inside my own head isn't going to work anymore.  I think my head has enough to deal with now!  So I need to come to full terms with my chronic illness, not be ashamed of it; embarrassed to share that side of me anymore.

So on one hand I wish my family and friends could really and fully understand what it is like in my shoes. What my pain is like, what I deal with on a daily basis. How this isn't "just a headache". But on the other hand I find I have a hard time talking to them about it.  I try so hard to have a "normal life" and not let my pain rule my life that so many just have no idea.  But I need to Woman-Up!  This blog is my first step.

Baby steps, right?

Saturday, January 14, 2012

A little empathy goes a long way

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 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....)

Friday, January 13, 2012

Tracking Carbamazepine Side Effects/ Treatment

December 30- I found that in the middle of the night I got this "off" feeling and has a bit of nausea. But probably the most annoying was I had a bit of insomnia! I had the hardest time falling asleep and then staying asleep. OK, I am only on day two, and on a really low dose (I am slowly working my my way up). But I am feeling a bit hopeful. In the spot behind my eye where I have had my most intense, constant pain for the past 5 years I now can best describe it as a "void". I am so used to constant pain, with shooting pain on and off. And since last nights pill I have zero pain or pressure! It is amazing.

I always would tell my husband if I could just take a knife and cut out that one spot I would feel so much better. Well now it is as though exactly that has happened. That is why I used the word "void".

December 31- So as of today: no nausea today and also no insomnia last night. I took my pill 4 hours earlier then the night before in hopes of offsetting the sleep disturbances, and I think it worked. I also feel much more chipper and less frazzled then usual. May have to do with less headache pain or could be the meds- who knows. But so far I am loving this stuff. I want to go hug my doctor. After 5 years of no one knowing what was wrong with me, I was at first very discouraged and afraid with her diagnosis. But as long as I have a med that actually works, I guess it isn't such a scary outcome. Until next Wednesday I am at 100mg a day once a day. After that I jump up to 200mg twice a day so I can only imagine how it will work even better then. At least I would assume so! One thing I have noticed that although I no longer have the pain behind my eye and the back of the head, I am acutely aware of my cheek bones.  I know that sounds weird, but it is a strange feeling.  They don't necessarily hurt, but I do have a constant "sensation" and slight tenderness. Almost like sinus issues. The Trigeminal nerve is located there and this drug is specifically used to treat that one. So so far it is definitely working on the occipital nerve but I think I need to up the dose to notice it working on the trigeminal.

January 1- I get to move up my dosage on Thursday. I've noticed I still have headaches, but in all new places then I ever had before. Its weird. But I hope those settle up some once the stuff is fully in my system and I am on a complete dose. This may be vain, but I must admit I am glad weight gain isn't a side effect for this medication! Honestly I think I would have told her I wanted something else if I was going to gain 30 or 50 pounds....

so far I don't feel trippy at all on this stuff. But I do have lower backache that is uncomfortable and annoying.

later in the night of January 1- Ok, it has been a few hours and now the whole side of my face/head is in serious pain along with my new lower back pain (medication side effect) so I decided to take some pain pills. AHHhhhhhhh. So nice to get some relief finally! I never take narcotics for this stuff, but tonight I just couldn't take it any longer. Glad I finally caved.

Thursday, January 12, 2012

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.

Wednesday, January 11, 2012

Even a haircut can be dangerous

December 23- Yesterday the craziest thing happened to me. I was at the hair salon to get a haircut. My hair was being shampooed by one of the girls (they are amazing at this! I always found it super relaxing for they give you a head massage during it). Well the girl started massaging on the sides of my head next to my temples and behind my ears and I got instant pain! I almost jumped out of my chair it was so bad. I am thinking it was trigger point related because I had one taken care of a few months back in my neck with an injection. But I have never had anything like this- intense on the spot pain just by touching.  I will definitely have to bring it up to Dr. D when I see her next....

Tuesday, January 10, 2012

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....

Monday, January 9, 2012

Optical Neurologist visit tomorrow!

December 18- I am going to an Optical Neurologist tomorrow. This will be my first visit with a neurologist of any kind. I am a huge mash-up of emotions. I am excited to see what they may come up with. But also completely freaked out. What if they find something crazy serious. But also, what if they find nothing at all.... Ugh. I just want it to be over with already. I am to expect to be there at least 4 hours, although it could be more! Any of you see an Optical Neurologist before? What kind of tests do you think they will do that it is going to be such a long day? Send positive thoughts and prayers my way, OK? Thanks guys! xo

Sunday, January 8, 2012

Possible New Diagnosis- Occipital Neuralgia

After my last appointment with Dr. D, my xray and CT showed I had a narrowing of the nerves in my neck/spine. With the researching I have been doing the term I keep coming across for the narrowing of the spine is Spinal Stenosis, and it sounds exactly like what she described.  She is sending me for an MRI sometime this month to look at this more closely.

The CT also showed that my sinus's are "a hot mess", as Dr. D. calls it.  She said that of the 5 sinus's in my head, every single one of them is 100% blocked.  She is starting me on a heavy duty antibiotic to try and clear it up.  We we reevaluate them again at my follow up appointment in a month.  In the meantime I am to keep going with my physical therapy.

Follow up: 3 weeks later I was in the Doctor's office for my son (this is a family practice so we all go there)  and I wanted to touch base with her on the status of my MRI.  She happened to not be busy and have a few minutes to chat with me.  She said the MRI showed that I DO NOT have spinal stenosis, thank goodness.  Not sure why the other scans showed something different, but we will go with it.... But what the MRI did show was that my sinus's are still really bad, almost still fully blocked.  She is especially concerned about my Sphenoid Sinus.  This little guy is located right smack dab in the middle of your head behind your eyes.  It is fully blocked.  If not cleared up it can lead to major stuff like meningitis, and other things.  She is putting me back on another, even more powerful antibiotic to hopefully clear it all up for good.

The headache pain that I am always experiencing is located right behind my left eye.  plus I have other symptoms that lead her to believe that I may have a condition called Occipital Neuralgia.  She is sending me to an Optical Neurologist for further assessment.  Apparently there is another trigger point injection that he could perform in his office to help with that and also to help determine if I do indeed have this disorder.  So on to my very first neurologist.....

Saturday, January 7, 2012

The REAL Pain Assessment Scale

If you've ever been to the doctor you've seen this cute, yet oh so demeaning Pain Assessment Scale.

I think this one is much more accurate.  What do you think? lol

**Here is the blog post that goes along with  the new and improved pain chart.  It was just shown to me and I LOVE it!  She explains what is going on in each face, and it is so funny.  Be sure you give it a read!  Click {here}

Trying to get up to date...

Up through the today, I have been keeping an informal journal, jotting down notes in my headache journal (although not frequently enough) and updating my pain/medication/breakthrough headaches on my facebook support group pages.  But nothing all in one place.  That is what this blog is intended for.  I wanted a comprehensive guide, if you will, on my ups and downs, plus a place for my doctor to check up on me (Hi Dr. D! *waves*) , or if one of my doctors, etc asks me a question about my recent or past pains, how my new meds are working, etc. I can actually tell them much easier instead of fumbling through my foggy, at times, brain.  I am hoping to get everything up to date this week.  But that is why you see dates listed in so many of these blog posts. I was originally going to set them at the date that I was experiencing each event, but this just seemed easier.  Thanks for your patients :)

Friday, January 6, 2012

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.

Thursday, January 5, 2012

When I really started to notice Beta Blockers weren't enough....

August 1- wow, what a day. Got to spend all afternoon and much of the evening in the ER due to the worst migraine of my life. Feeling much better after the "migraine coctail" I got, but now feeling spent and weary. Thank goodness tomorrow is a new day. I have had lots and lots of migraines the past few years, but nothing ever like this. I've never needed to go to the hospital before. Luckily the ER knew their stuff and it all worked like a charm. But definitely scary!

September 15- Ugh, I have a sinus infection.  YET AGAIN. And to top it all off I also have this bronchial infection that has me coughing so hard I feel like I am going to break a rib. It is horrible! My primary care doctor today actually gave me an inhaler to go along with the zpack. I've never had a cough this bad in my life. crazy.

When I am not coughing I feel totally fine, aside from the sinus stuff. But when I cough it literally takes my breath away. I think all my chest and back muscles are strained from it! But luckily the inhaler seems to be working out great.

September 26- ugh, this head cold and cough are kicking my butt!!! I was on the mend and now all of a sudden I feel like it is full on bad all over again. I hate to have to go back to the doctor. crap.

Tuesday, January 3, 2012

“People cry, not because they’re weak. It’s because they’ve been strong too long.” 
-shared by The National Headache Foundation 

Monday, January 2, 2012

So what exactly IS CDH and NDPH anyways?

Chronic Daily Headache Syndrome is a neurological dysfunction that presents itself as a headache that lasts at least 15 or more days a month. New Daily Persistant Headache is actually a branch off of CDH, it is a sudden onset of intense headache pain that lasts a minimum of 3 months.  These two are very closely related and are now almost considered one in the same because most sufferers of CDH have a headache 24/7 just like NDPH.

I am often asked what it really means.  Like do I really have a headache every single day and how many headaches do I normally get? The answer is yes, I REALLY DO have a headache every single day.  And as for amount, I have had One.  The same one.  It just never ever went away.  I always have pain in my head.  Before my GP put me on preventative medication my daily standing pain level was at a 6-7.  That is near migraine pain, nonstop.  Now that I am on preventatives, my daily pain has been held at a "comfortable" 2-3.  I say "comfortable" because after almost 5 years of the same pain in the same place I am able to go about my day pushing the pain to the background.  I have to!  I am a stay at home mom and I have two children at home with me that I care for every single day.  As much as I would like to lay in bed and sleep off the pain some days, it just isn't possible.  Pushing through the pain is essential.

I think the very best description I ever heard for New Daily Persistent Headaches was it described as a bright light controlled by a dimmer switch. It gets brighter and brighter (intensifying the pain) and then dimmer. And then back again. But it never gets shut off completely.  When I read this I was like YES!  That is exactly how it is!  

Sunday, January 1, 2012

My new "Normal"

Chronic Pain. It is never something I thought I would have to deal with. But then again 5 years ago, I just kinda assumed that all people dealt with headaches on a regular basis. After my sister brought it to my attention saying to me, "You sure get headaches a lot." At first I blew it off, and then I really started thinking about it. And yeah, I guess I did. I would get one pretty much every day, sometimes for a few minutes, sometimes a few hours.... When I started asking around I found that no, most people don't live with regular headache pain. I was just a weirdo with issues. I guess deep down I knew that. But it just seemed strange to me. I knew I should probably see someone about them but I just hoped they would go away on their own. But they didn't.

We were sitting in church, and I remember leaning down to pick up a hymnal and I got this crushing feeling in my head that I had never felt before.  Every movement sent me reeling in pain.  The music became too loud, the lights too bright and all I wanted to do was to go bed.  Welcome to my very first migraine.  I went to bed and slept for over 4 hours.  I woke feeling groggy and disoriented.  The migraine itself had faded but my daily pain was there and stronger then ever.

Instead of those few minutes of headache pain it had slowly morphed into hours which turned into days and then just never ever went away. I was living with constant 24/7 headache pain and the intesity was increasing to where just a couple of advil no longer did the trick.

It was now time to see my doctor.  I went to my general practitioner because that was all I knew.  I went to him for everything else, so it just made sense for this too.  He had me keep a Headache Journal.  I was to write down everything; what I ate, what I did, anything at all that could pin point what on earth could be triggering these headaches.  I was to keep it for a full month and then come back in to see him and we would go from there.  He also sent me for a full CT of my head to check for tumors, aneurisms, and other major icky stuff.

UGH, one whole month without answers?  Crap.

It seems stupid now, but I really and truly thought he could tell me what was wrong and how I could fix it at this appointment. This is how it always worked in the past.  I would have something wrong.  I went to the doctor.  He would tell me what was wrong, prescribe me some medicine and two weeks later I was all better.  I never had a "condition" before.

So dutifully I wrote it all down.  And I noticed a trend: There was NO trend.  I would wake up and the headache would be there.  I would go to bed and the headache would still be there.  Unfortunately I couldn't find any food triggers.  I was really hoping that something I was eating was doing this to me.  I would much rather live without coffee then to have constant headaches.  But since I woke with it and went to bed with it we couldn't find anything I was doing that was giving me this pain in my head.  On a positive note, my brain scans can back normal, so that was GREAT news.  I had to admit I was a wee bit terrified he was going to call me and tell me I need to come in for emergency surgery to remove the giant tumor pressing on my brain. *phew*  But the downside is that I really had nothing to bring to the table: no triggers, no tumors, no aneurisms, no nothing.

He said I had a condition called Chronic Daily Headaches (CDH) which is also known as New Daily Persistent Headaches (NDPH).  He explained that just like some people had high blood pressure, I had Chronic Daily Headaches.  There was nothing I did to give it to myself, and unfortunately there was nothing I could do to get rid of it.  And it was likely I would have this condition for the rest of my life.  Now it was time to talk about a daily preventative medication and one to stop my migraines in their tracks (I had already had a few more before I actually got in to see him).  We had to get my pain level under control.

Um, wait.  You mean to tell me I was going to have this headache for the rest of my life?!!!!  What the hell?!  Not the news I wanted to hear.  I have to admit at this point the thought of a brain tumor actually sounded a little appealing.  At least then they could cut it out and I would be done with it.

Nope, no such luck.  This is my new normal.

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