This particular blog is dedicated to my Meningioma Mommas, The American Brain Tumor Association, any one who is a brain tumor survivor, or has a brain tumor, that cannot be operated on at this time...and to any one who has ever experienced a traumatic brain injury or a head injury in general. I realize it encompasses a lot of people...but I really want to give you all a sense...of what this kind of lifestyle is like for many of us.
I am no expert by any sense of the imagination. What I write here, is from personal experience and also out of much frustration and misunderstanding from many...who don't or haven't experienced this.
By the time..you have read this, I hope you will have a better understanding, of what some of us go through on a day to day basis. That's just the point, we need to keep on keeping on with day to day activities. Life does not stop, just because we were diagnosed with a brain tumor...benign or malignant..or experienced a head injury of some sort.
But this blog...will be primarily about what I have been experiencing along since November of 2009.
On and off, I have been experiencing severe HEAD PAIN...not HEADACHES..as so many along my path keep saying. I also along with this have been having real bad bouts of nausea at times.
The HEAD PAIN...could be for several reasons. Scar tissue, changes in the weather. Living in ND that can be a constant thing. LOL I have tried to cope with that for the most part...by using cold packs, drinking plenty of water...and using Tylenol when necessary. I also have started wearing a cozy cap to bed..at the suggestion of one of my Meningioma Mommas. It has really helped. I can't explain the scientific reasoning for it...but who cares! It works, so don't knock it, until you have tried it...right? My neurosurgeon...said when I told him, "Whatever works." I'm with him on that.
Because of my constant nausea...and again having problems with tilting my head back or forward, without feeling like I was going to hurl, he sent me to see a neurologist.
I had just had another CT head scan...which was CLEAR! I was really happy about that...at least we know, nothing is lurking in there.
So I went to this neurologist, who evaluated me..had me do some simple steps to see if my balance was off. Touch my finger to my nose..that sort of thing.
She still felt that I needed to go to a balance center..for further tests to possibly determine the cause, of the nausea. She also wrote a prescription for Neurontin (rotten) which is an anti-seizure medication. Now in her defense.. the reason they prescribe such a med is to try to stop that firing sensation..that sometimes occurs inside our heads. That being the HEAD PAIN! You will see me referring to this many times, as I am trying to convey once and for all that these are not your everyday typical headaches.
Well, I only ended up only taking 2, because I experienced such a bad reaction. Several in fact. The first one was my joint pain acting up as, I also battle Rheumatoid Arthritis, as I have mentioned in previous blogs. Believe me, I am a regular walking medical case, and I have learned much along my journeys. There have been many. Anyway, back to my second reaction, my mood swings were just terrible. I became so angry and frightened. I cried because at that time, I just felt so hopeless. I realized at that moment, that this particular type of medication was just not for me.
So the next morning I called my nurse and told her my experience. She also agreed, that it was okay to stop. There was really no danger that I would experience a seizure...because I quit before anything could really happen. If you do take this type of medication on a regular basis and you wish to get off, you have to wean yourself off very slowly or you could actually experience a seizure. It's very scary stuff here, FOLKS!
I also called and left a detailed message with my neurologist and explained that I had been in touch with my primary doctor's nurse, etc. She didn't even bother to call back. This was a RED FLAG to me. Why wouldn't you even call back, if for nothing else, but out of concern, because I stopped the medication?
She had also scheduled an MRI, which I decided at that point that I would do, but nothing else regarding medications until something was determined. This was truly frustrating. This is why you have to be PRO-ACTIVE when it comes to your health. Learn as much as you can and for goodness sake, don't ever be afraid to ask questions. Remember, this is happening to you and you alone, know more about your own body than ANYONE else!
I am really ranting here...but I am just so sick and tired of believing that everything our doctors tell us, especially if it can be bad for us, to take as GOSPEL! Use your heads! If you don't think you can handle a doctor's visit on your own, by all means, take a trusted individual with you, who can also ask questions along the way.
So I tried to recover that day..with resting and really not doing much else.
My next step was to go to the balance center. My physical therapist...was very kind and understanding of my situation. We took things slow...but even that turned out so wrong. When she tried to do a test on me...I was set off so bad...that it took almost a week to get back to normal. What she did was...have me lie back with my knees toward me and hold on to her elbow and then turn by head first to the left...which went pretty okay...it was when she turned me to the right...that I was set off so bad...but she wanted me to hold on for just a little while longer.
By the time...she raised me up...the nausea was just so bad...and I instantly become very warm and very unsteady. She felt so bad. I realize, she was only doing her job...but this was terrible!
So it was determined...that I probably, don't have what they call positional vertigo...which usually involves the inner ears...but something more centrally located. We did talk at length about a week later...but she was very honest in the fact...that she probably couldn't help me...because she was pretty sure I wouldn't be able to tolerate any more of her testing.
Another reason it was determined that it probably wasn't postional vertigo..is that when you are brought back to your original position, that you recover quite quickly..as was not the case with me.
So here we were again...frustrated and feeling very depressed about this whole issue...as my nausea was just not getting any better.
But the Friday...before, I took some steps upon myself. First...I remembered when I was on a particular drug for my RA...that I took Ginger Root...after suffering nausea for about 2 years prior. It seemed to work really well...and thought...what have I got to lose? I actually felt pretty good that evening..and could actually eat a little.
The other things I did and they may seem desperate to you...but that, was what I was. I decided to cancel my MRI and any more appointments with my neurologist. I was disgusted with the fact...that no contact was ever made...and as far as the MRI was concerned...I had just had a clear CT just recently.
I contacted my PCP's nurse and told her what I did. She said that was fine..but she was still so concerned about my nausea. She asked me what I wanted to do? I told her...just to wait out the weekend and see how I felt on Monday. Well Monday came...and I really wasn't feeling much better...so he wrote me a prescription for a anti-nausea med...that you put under your tongue...and by Wednesday...I was feeling much better.
We are just going to monitor this situation. If the nausea becomes unbearable again, then my doc wants to see me again...and possibly, set up another appointment with another neurologist.
I write this...because hopefully someone reading this may be going through a similar experience...with frustration of feeling lost and afraid.
With some of my birthday money...I purchased a CD of one of my all time favorite singer-songwriters...Neil Sedaka. In his jacket he describes songwriting as a catharsis...getting it off your chest, if you will. That's exactly, how I feel about writing my blogs.
So...my journey continues. The other night...I was awakened with SEVERE HEAD PAIN and not a HEADACHE! You just learn to cope with these things...and tell yourself, that it will get better...because it did.
I am so very glad that I have my support group...Meningioma Mommas..and most of all, for it's founder, Liz Holzemer...who will be a 10 year M survivor herself, on February 11TH. Now...that is really something to celebrate!
I hope this has really given you a sense...of what life has been like..as of late. Oh sure...there will be more ups and downs...that's just how life is. As I said before..in one of my previous blogs, "It is what it is."
Now...is it HEAD PAIN or a HEADACHE? I hope once and for all...you really understand, that it's truly the first.
Us head cases have to stick together and support each other...that's how we get through each day.