Hi. My name is Mindy. I am 43 years old. I will start out with some basic information so this makes sense.
MEDICAL PROCEDURES:
- 2/1976 - Tonsillectomy
- 12/1986 - Maxillofacial Jaw Reconstruction (severe headaches began following surgery)
- 7/1992 - HELLP Syndrome & birth of my Autistic son
- 7/1995 - Diagnosed with Bilateral Trigeminal Neuralgia (TN) & Bilateral Atypical Trigeminal Neuralgia (ATN)
- 10/1997 - HELLP Syndrome resulting in loss of twin pregnancy
- 10/1998 - Cervical Cancer (LEEP/CONE)
- 4/1999 - Cervical Cancer & Uterine Cancer (Total Abdominal Hysterectomy)
- 12/2008 - Sciatica/Discectomy, Fusion, & Laminectomy on L4-L5 & L5-S1 (currently one herniated disc)
- 12/2010 - Bilateral Gamma Knife Radiosurgery (GKR)
DIAGNOSIS:
- Anxiety
- Depression
- Asthma (rare now)
- Vitamin D Deficiency
- Sleep Apnea
- Essential Tremors (ET)
- Bilateral Atypical Trigeminal Neuralgia (ATN)
- Bilateral Trigeminal Neuralgia (TN)
- Occipital Neuralgia (ON)
OTHER SYMPTOMS (Undiagnosed):
- Tingling, Burning, and/or Numbness in fingers, hands, forearms, toes, feet, lower legs (especially left)
- Cognitive Issues (Trouble spelling simple words, leaving words out of sentences, lose train of thought in middle of a sentence, repeat myself often, severe short term memory loss, go blank when asked a question that would normally be simple to answer, forget where I am driving sometimes, forget how to get to the front of stores to check out and leave that I have been to many times before, etc.
- Blurred/Fuzzy Vision (no dx of Optical Neuritis)
- Exessive Sweating (I don’t hardly have to be doing anything; dishes, just after bath, and at times just sitting). I often wake up with my face, hair, neck, & back drenched. (Just began approximately two months ago).
- Balance Problems (I’ve fallen down stairs several times and anytime I try to lean over (which is not easy with the titanium rods in spine) to do things such as tie shoes, pick something up, etc., I will fall into walls, doors, etc.
- Incontinance Problems (Instant urge to urinate. Feeling of very full bladder. Continue to urinate after wiping. Lose control of bladder easily when tickled, coughing, sneezing, or vomiting.
- Severe Fatigue (But usually have troubles sleeping for more than four hours at a time and can not seem to get my days and nights back on track).
- Chronic Aches (All over - no rhyme or reason).
- Feet/Legs go numb and I am often unable to get up quickly and walk (this has increased over time. Sometimes get severe swelling from right below knees all the way to toes with no apparent cause).
- Weight fluxuates by as much as 10 lbs. in a weeks time but will go back down almost as quickly as it went up).
- Vertigo (At least 3-4 times a week I will lay down at night to sleep and feel as if I have a bad case of the bed spins. The only way to seem to make it stop is to brace myself and open my eyes. It seems to happen mostly at night).
CURRENT MEDS:
- Wellbutrin XL
- Topamax
- Inderal LA
- Maxalt MLT (prn)
- Morphine Sulfate IR
- Lasix (prn)
- Potassium (prn)
- Baclofen (Just started and not liking it - went from hardly any sleep to sleeping 16-20 hours/day).
I’m sure I may have missed a thing or two but that is pretty much my medical history. I had Multiple Sclerosis ruled out in 2009 but was told I would be watched over time due to having Essential Tremors my entire life, ATN & TN since the age of 17, and several of my ongoing complaints that have not changed over the course of years, dating back to 2008. When I first began getting ATN & TN attacks, they usually only lasted approximtely two weeks at a time and maybe 2-3 times a year. Now that I am 26 years into this, my last exacerbation began 05/10/2010 and has never stopped. My doctors include my PCP, Neurologist, Neurosurgeon (Spine), Neurosurgeon (Brain), & Pain Management doctor. I was told that being this far into it…this one may be “The Big One”, the attack that will never end.
I have been telling my doctors the very same symptoms over and over for over four years now. They seem to just stand there with their arms crossed in silence. It always makes me feel very uncomfortable, crazy, a Hypochondriac, as if I am not believed, etc. (although I have been assured they do believe me).
I understand that nobody here is a doctor or can give me diagnosis especially without seeing me…but have any of you gone through this? If so, what was the outcome? Do I sound like I may even be on the right track? I feel so lost and alone in this fight to figure out exactly what is going on with me. Maybe I am nuts?! I don’t know. Looking for any un-professional advice. Thank you!
