Botox…Not Just for Beverly Hills Housewives

Let me just preface this by saying that my eye pain has come back and that it is really hard for me to look at any screen or book…otherwise I’d be in college, finished, and have a job instead of writing about all my chronic illnesses.  Time for steroids…Prednisone, that is.  I’m not a WWE wrestler.

I’ve been getting Botox injections for headaches and chronic “trigger points” for 2 years.  I first heard about it approximately 8 years ago from a Russian neurologist…like Putin-Russian…that I was seeing for headaches as my original neurologist had left.  I had terrible headache pain when I was 14 years old.  I remember Freshman year 2004, sitting in Honors Biology–I’m a Type A, overachiever–, and having to bite my lower lip hard so I could concentrate on the whiteboard and what was being taught.  The pain above and right between my eyebrows was so intense.  My mom took me to a recommended neurologist, my first of many, and he prescribed me Firoicet which has caffeine, Tylenol, and something else in it.  It worked wonders.  Actually, for a period of 2-3 years, I rarely had a headache.

Then came my Fibromyalgia in 2007 and I had “trigger points.”  I was also diagnosed with TMJ in 2006, plus I have a hereditary clenching problem, especially at night or when I’m concentrating on something intensely like exercise, so the muscles (masseters and pterygoids) would get tight and sore.  Botox-TMD1Then because everything is interrelated, my headaches started coming back due to the TMJ trigger points and clenching.  To finish out this cyclical pain, I was getting trigger points all down my neck or sternocleidomastoid (SCMs), trapezius muscles, and my suboccpitals at the base of my skull.  The pain never shut off and kept feeding in to each other.

I tried massage therapy, do physical therapy…which I could write another blog about all the dud PTs I’ve had…where the physical therapist can release the trigger points doing myofascial release, but the relief was short lived, did acupuncture with electrostimulaton and cupping for 10 years…but gradually it became less and less effective over the years and now results are the same as the PT.  {I will write anther blog post on acupuncture.}  I was in a lot of pain, especially in my neck and shoulders.

Finally, after a lot of research on my dad’s part, we found a neurologist who did Botox injections.  I was nervous as hell the first time.  I can’t tell you how many Xanax I took.  I felt like I was going to pass out, have a heart attack, and an anxiety attack all at once.  Once I got in the room, it was surprisingly painless…or maybe because I’ve had acupuncture done for so long and am used to being stuck with needles, it didn’t bother me.  The theory is that injecting Botox relaxes muscles.  That’s why people get it for cosmetic reasons; it relaxes the frown lines, the brow furrows, etc.  BLOG-triggerpointThe same principle applies for actual symptomatic reasons.  You inject into the muscle, try to deactivate or minimize the trigger points and give the muscle spasms time to relax over three months until the Botox wears off and you need another treatment.  Currently, I get routine injections every three months, which my family’s insurance covers.

There is a book called “The Trigger Point Therapy Workbook (3rd Edition)” by Dr. Clair Davies which illustrates all the parts of the body where trigger points can be located and where in the body that they correspondingly cause pain.  It is a huge help to have a physical therapist who is well-versed in this type of work and theory.

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Figure 1.

 

Here is an example of my frequent trigger point areas and where the pain is then referred.  [Figure 1.]

When I go to the neurologist for the Botox injections, he usually injects the sites. [Figure 2.]  This Monday was the last time I got my injections.  I can tell instantly when they are starting to wear off as I get pounding headaches, really debilitating vertigo, and knots all over my traps and in my masseters and pterygoids.  My initial neurologist who performed the first Botox injections as well as my current neurologist who I’ve been seeing ever since, both said that each session of Botox injections should help my muscles relax and that over time, they won’t be as tight any more.  Additonally, they said that the more you use Botox, the longer it will last between each injection session.  Well, because it’s me, the opposite is happening.  The muscles never relax and the Botox is only lasting for half of the time.

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Figure 2.

As you can see, Botox has many different purposes, including treating hyperhidrosis.  Ironically, my doctor mentioned that the USDF is doing testing to approve Botox for combating depression.  If that’s true, it certainly hasn’t helped my depression in the last two years.

Someone Like Me…

0513419613c1fd2325092a7924cda47243a5be-wmI don’t know if this will help. I don’t know who will read this. But I need some way of expressing all that I’ve been through and continue to go through physically, mentally, and emotionally.

I’ve told the story so many times. To friends, family, strangers, and, oh,…the countless doctors, nurses, physician’s assistants, specialists, psychologists, psychiatrists. I will tell you how I got to this point, but not today. Maybe not even in a week or a month.  I don’t have the energy to.

No one understands. How can they. Is there really anyone in the world out there like me? How can anyone relate unless they’ve been through what I have?  It’s just like I couldn’t relate to someone who has had breast cancer and been through chemotherapy.

Sometimes this may seem like a big pity party, but once I explain what I’ve all gone through, sometimes a pity party is earned.  You don’t have to agree with that thought.

For the past four and a half months, ever since I came back from the University of Utah at the beginning of November, with no solutions, my last hope in solving one of the biggest issues I’ve been suffering from, I barely get out of bed.  In fact, I stayed in bed the entire month of November.  I can count on one hand the number of times I left the house that month.  I made a brief appearance to eat turkey at Thanksgiving, and then I retreated back to solitude, the comfort of the darkness of my room with the blinds down and door shut. Christmas was the same ordeal.

My longtime psychiatrist knew I felt suicidal…he knew all of the medical problems I’d been going through for 10 years.  On my last visit to him in November, he called the police, who arrived at my home.  I didn’t go with them.  But that night and the next few days, I did a lot of research on “involuntary holding” at a mental institution.  I felt betrayed and like my basic human rights were violated.

An appointment for a new psychiatrist was scheduled, but I couldn’t get in to see her for another three months.  I obviously stopped seeing the former longtime psychiatrist and went off my fairly new depression medication that he had put me on as I didn’t think my longtime drug of Cymbalta was working.  Lesson learned that I should always stick with what has been working.  In December, twice I landed in the E.R. because I felt panicky and like I was literally losing my mind.  I felt like I was going crazy.  It’s something that I NEVER want to feel again.  After going to the E.R. the second time, I spent hours upon hours looking at mental institutions in my area, both in state and the neighboring state.  I was ready to be committed.  I printed off information of what to expect when I was committed and even called a facility at 4 a.m. and left a message saying I wanted to be admitted.  The former psychiatrist put me back on my old prescription, and that got rid of the insanity feeling.  Though if I ever feel like that again, I’m not afraid to commit myself.

Back then and right now, I didn’t and still don’t care about anything. Why should I? I have nothing to look forward to. Nothing to live for. I still don’t. Last month it seems like November and December are repeating themselves over again.  I have no motivation to get out of bed. What is there in the world for me to do?  Everything that I was once able to do has been taken from me. No reading, no horseback riding, no finishing college, practically no exercising at the gym, no friends, no plans.  Just face every day with drudgery.

It has been almost four months that I just lay in bed.  Sometimes I don’t get up until noon or later.  I can lay in bed half the day and switch to a couch.  Other times I just stay in my bed and dark bedroom all day, only coming out to eat…and even then I frequently miss meals.  I used to be super fit.  I loved going to the gym.  0518944058be263373823a2b20c4c10651e0faI was so proud of my lean muscle mass and 14% body fat from lifting weights.  Now, I’m just wasting away.  I can’t find any motivation to go to the gym.  Other medical problems like severe tachycardia, which has severely limited me and gotten progressively worse in the three years I’ve been dealing with it, combined with my frustration of not being able to do what I once was able to, and now my lack of motivation and depression of knowing and seeing all my years of hard work at the gym just vanish within six months.   My parents say that doing something is better than nothing. I disagree.  It’s sort of like telling a pro golfer that they can’t play 18 holes and need to go back to playing mini-golf.

“My Friends. There Are No Friends.”

When a chronically ill person is thought to be making everything up by “friends” who couldn’t care less what you were going through.

Wise words coming from Coco Chanel.

Ugh. As I write this, I have really bad vertigo that’s lasted for a week, resulting in me not leaving the house.  I also have an involuntary twitch in my right eye.  Both are signs that I need Botox again.  Sweet relief on Monday!

Since I got sick in November 2005 at the age of 15, many of my classmates thought I was faking my illness of Chronic Fatigue Syndrome and a host of other health problems that came with it.  I went to a private Christian K-12 college prep school and literally grew up with these people.  My school days were condensed from 8 a.m. to noon every day my Sophomore and most of my Junior year.  I would attend school, go home and sleep, do homework, and then sleep again.  Everything that I did before I got sick, I couldn’t do any more.  No more horseback riding.  No more going out to see a movie in the theater. No going to the gym.  Nothing.   How could they think that I was faking this?!tumblr_npb27jXTSz1unfphno1_500  No one ever asked about my countless doctors appointments, the fact that within a few weeks I was 108 lbs with my pants hanging off my hipbones because I was bedridden and exercising was out of the question, or asked how I was doing or hanging in there.  And that’s when I realized: unless it’s happening to them, no one cares. 

Being a Christian school, we had Chapel services every week.  There was this one girl who was extremely annoyed that I didn’t have to attend Chapel and she did.  I would’ve gladly sat through an hour of services than go through the hell that was Chronic Fatigue Syndrome.  She was also annoyed that I missed classes frequently due to being too tired or going to countless doctors appointments all around the area.  Again, I would gladly have traded positions.

Many people think that with Chronic Fatigue and other chronic illnesses that because you look fine on the outside, you are fine on the inside and completely making up your illnesses either for attention, to get out of responsibilities…I don’t know what they thought.  At first it really bothered me, especially when my so-called “friends” doubted me.  And then I realized that it wasn’t worth it.  I had more important things to worry about like my health and staying in the top 5 in my competitive academic class.

My dad told me a story of when he was in high school.  It was a super small town where everyone knew everyone.  Kids went to Catholic school and then to a public high school.  He and his best friend, Jim, were very popular.  When it came time to go to college, Jim’s dad, a high school advisor, told the both of them something that resonates with me, also.

“After high school, you’ll be able to count the number of friends on one hand.”

They thought he was crazy at the time.  They had practically a hundred friends.  Now, they have each other and maybe a couple of other people who stayed in touch.  I can count on two fingers the friends that are really there for me no matter what.  People who genuinely care about me.  And guess what?  They weren’t people I grew up with in school.  They weren’t even people I met in college.  That’s a pretty sad fact.  After high school when we all parted ways to different states for college, I tried to keep in contact via Facebook, texting, and calling.  In the first transition semester of college, old school friends still tenInstagram-hater-fake-friends-quotes-memes-17ded to occasionally talk to you to combat their loneliness and adjustment to college life.  But then as years went on, when they finished college, and I had to stop and drop out of college due to excruciating eye pain, any contact was rare.  Maybe in the early years I’d get a text saying that we should meet up over any college holiday breaks.  But it never really happened past the first year of college.  I met up with one of my best friends in private school during our first year of college during Thanksgiving or Spring Break.  But after that, I didn’t see her for 5 years.  I was always the one initiating: sending texts, calling and leaving voicemails, saying we should grab lunch and catch up, etc.  It’s exhausting always being that person.  If they don’t care to return my calls or texts or want to hang out and talk about how life has been, why should I give a damn?  (That reminds me of my favorite movie with Rhett Butler saying, “Frankly, my dear, I don’t give a damn.”)  If you would ask me what any of my old classmates were up to in life–what they majored in college, where they are living, what job do they have, do they have a serious boyfriend, are they engaged, married, or already starting a family, I honestly couldn’t tell you.  And if you asked them the same thing about me, they wouldn’t have a single clue, either.

Put All Your Eggs in One Basket.

Blogging is supposed to be therapeutic.  Whether that’s the truth or not, I’ll soon find out.  But for the mean time, I thought I’d give it a go as an outlet for all my crazy, mismashed, disorganized thoughts that plague me and make my mine race when I’m trying to get a good night’s sleep.

For my first post, I didn’t want to get too heavy and deep in to my most difficult and life-altering medical issues just yet.  As I was getting images off the Internet for this blog, I found that March is Endometriosis Awareness month.  My adrenals, thyroid, and hormone levels have been off for years.  My periods have always been very irregular, heavy, and extremely painful.  I can thank both sides of the family gene pool for that.

Part 1: About three years ago, I doubled over in pain on my left side.  At first I thought it was my appendix, but it felt crampy as well as a sharp, stabbing pain.  An ultrasound revealed a small cyst on one of my ovaries.  I went to the doctor who manages my hormones, adrenals, and thyroid…not an OBGYN…and he said that it was small and benign enough that it would go away on its own.  Sure enough, it did.

Part 2: Cut to a few years later: it’s baaacccckkk.  In the past, I would cramp a day or two before and during, but for the past 6 months, I’d have excruciating cramps two weeks before.  Once I had to  go to the E.R. it was so painful that the Naproxen I’d taken for 10 years no longer worked as a painkiller.  I graduated to Vicodin.  My screams of agony sounded like I was giving birth.  Something needed to be done.  Like the idiot doctors that they are–I’ll save that for another topic–no one ordered a follow-up ultrasound.  An MRI image done of my lower spine inadvertently showed follicles growing on my ovaries.  Cue appointments with various OBGYNs.  Last April, a laparoscopy was done, and the OBGYN removed some endometriosis. tumblr_mj3zijWWQb1rii3uxo1_500 However, I was still in pain months later.  As usual, no doctor took any initiative in finding out what the problem could be.  Again, I found out about multiple follicles and cysts on both of my ovaries by accident.  After having an MRI done of my lower lumbar region to rule out another problem I’m having, the growths showed up again.  The size of one cyst was as big as a golf ball!  That accounted for my worsening period cramps, as well as exacerbating my Fibromyalgia, and the reason why I was in so much pain prior to getting my period.  I had now graduated to Polycystic Ovarian Syndrome (PCOS).

Part 3: It was time for the big guns: FULL OAVRIAN HYSTERECTOMY.  I met with previous OBGYNs including a top ranking one at a well-known hospital.  I had talked about having this procedure done for years as I knew I never wanted kids.  Every doctor questioned me about my decision saying that since I was so young, I’d change my mind or that they didn’t perform hysterectomy’s on women my age.  That in itself was annoying.  I’m not a normal cookie-cutter patient. This hysterectomy seems like the answer to my problems.  It would cut down on pain, which would get rid of one less pain sensor my Fibromyalgia-addled body would have to deal with; stop bleeding, which would save me from having to go to the oncologist every year and a few months for IV iron infusions due to chronic anemia which Aunt Flo so kindly contributed to; and, most basically, not having irregular periods and cause the cysts to stop forming.

Currently, I haven’t scheduled any surgery for the hysterectomy, yet.  Out of the 5 OBGYNs I’ve seen, all have conflicting opinions.  Most say that there still will be bleeding and that cysts could still form.  Though my common sense, which usually prevails over medical degrees nowadays, would think that once the ovaries are removed, no cysts can form on them.  Also, if the ovaries and fallopian tubes aren’t there to complete the signal when it is time to shed the uterine lining, how can I bleed?  These are still questions that I need to ask and schedule follow-ups with OBGYNs again to get their opinions.  Plus, I’ve given the added challenge of finding a doctor who can perform the DaVinci method, which is one incision through the bellybutton, instead of three across the stomach.  {I could get in to OBGYNs pushing for birth control, birth control debacles, and the bioidentical hormones that I’m on now, but my head can’t even think straight anymore.  It’s so convoluted and interrelated.  I should have a M.D. or Ph.D after my name.}

 

I know this is a really long post, but hey, I like to write…and my apologies for it seeming disjointed, but I’m not going for a 5 on the writing portion of AP English.  Here’s a little background information on Endometriosis and Polycystic Ovarian Syndrome (PCOS).         {I also recommend researching these conditions as well as Premenstrual Dysphoric Disorder (PMDD), a more severe form of Premenstrual Syndrome (PMS).}

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The endometrial tissue is located outside of the uterus thickens, breaks down, and bleeds.  However, this blood can’t exit the body like a the usual cycle of the uterine lining would shedding the blood, resulting in a period.  Instead, the blood becomes trapped outside of the body forming cysts and/or irritating and inflaming the surrounding tissue on the fallopian tubes, ovaries, outside of the uterus, or the intestines.  Every month, the displaced, outside tissue is exacerbated by the hormones of your period.  During the first half of your cycle, the tissue is inflamed; in the second half of the cycle, the repeated inflammation can lead to more irritation in the surrounding tissue.  Both can lead to infertility and intense pain in the form of cramps, adhesions-cysts and follicles on various organs.