| Undiagnosed chronic condition-constant spasms in head, neck, mouth, spine.
*This is a full symptoms sheet describing my chronic condition. Please read and reply. All comments/suggestions greatly appreciated. Thank you!!!
I am a 68 year old woman who has an undiagnosed chronic condition that began in approximately 1989 and has become progressively worse. I have seen neurologists, neurosurgeons, pain specialists, orthopedic doctors, rheumatologists, physical therapists, chiropractors, acupuncturists, Ayurvedic doctors, and others. I am desperately seeking alleviation of my symptoms, proper diagnosis, and successful treatment. My family has prepared this document to aid that goal.
UNRELENTING CHRONIC PAIN:
Very painful, strong, sharp, pounding, throbbing, muscle spasm-like pulsations are continually present throughout my head, neck, mouth, and down general area of the spine. What started as a small throb in the back of my head in 1989/1990 has progressed to a severe level. The symptoms below are not independent of one another; they occur together as one continuous force:
General occipital area of head: Extremely painful, forceful, severe, throbbing/spasm-like pulsations that are unrelenting and present 24 hours a day. This forceful internal throbbing is by far strongest in the occipital area of the head. On a pain level of 1-10 it is usually a 7. These symptoms tend to be consistently stronger toward the right side. Although present at all times, the symptoms can vary in level of intensity. Throbbing has a bouncy, jerking, “springy-like” feel and is in synch with pulse. The muscles seem to be in a constant state of forceful spasm.
Mouth/Teeth: The strong, throbbing movement causes my teeth to be pulled together on the right side and sometimes on the left. Occasionally “clicking” is audible in front right teeth. From time to time the right side of my mouth is visibly pulled upward.
Bodily movement: These forceful pulsations cause my body to involuntarily move from side to side, as if someone were pushing and pulling me back and forth. When holding a cup or paper in hand, it is moving/throbbing just as I am.
Spine/Back: The spasm throbbing in the general area of the spine/back is very intensified when I sit with my back against anything. The buttock area can also be affected. Because of this severe pain I’m on my feet most of the day and cannot sit for long.
Temple: Throbbing felt in right cheek up through right temple, occasionally left temple.
Ears: I feel the pulsations radiating from the occipital area of the head up towards the ears. Again, predominately on the right side but sometimes on the left.
Eyes: Occasionally I have an eyelid flicker on right eye and sometime the left. I feel the painful throbbing between my eyes if symptoms become very severe and sharp.
Legs: Sometimes slight tingling, throbbing; “string-like” pulling sensations in various areas
Feet: Occasional, slight throbbing, tingling sensation in feet and toes. No numbness.
PAST INJURIES:
In 1988, I was involved in a minor rear end collision and had a sore lower back after.
In 1987, I fell hard and flat on my back and head on a very hard surface. I had no problems after the fall. Two years after this fall the throbbing in my head began.
In 1985, kicked in lower back during a dance rehearsal; as teenager I broke my collarbone.
MEDICAL MRI’S/DIAGNOSES/PROCEDURES:
Medical doctors have not reached consensus on a diagnosis. MRI’s and other x-rays show osteoarthritis of the cervical spine (C5-C6 and C6-C7) but doctors indicate that the degree of pain/symptoms far exceeds the degree of cervical degeneration seen in the x-rays.
A musculo-skeletal radiologist reviewed MRI’s from 2004-2005 and found no obvious pathology in the brain, although plaque areas were present. MRI of neck showed some moderate disc disease at C5-6, but probably not related to symptoms.
Cervical Epidural, Cervical Facet, and Botox injections have had no effect on my symptoms.
CURRENT MEDICATIONS (*taken together for sleep)
Avinza (30 MG); *Tizanidine (4 MG); *Alprazolam (0.5 MG); *Zolpidem (0.5 MG)
I DO NOT HAVE THE FOLLOWING:
Pain or discomfort in the shoulders, arms, or hands
Sore spots on head or neck
Sore muscles
Joint pain (e.g. no joint pain when moving neck or back)
Restricted movement / restricted range of motion (I am very flexible)
Stiffness
Weakness
Light sensitivity
Nausea
Dizziness
Ringing in ears
DOCTORS HAVE RULED OUT THE FOLLOWING:
Epilepsy
Fibromyalgia
Lupus
EXERCISE:
I walk every day for 30-40 minutes.
This past summer I swam regularly which felt good and gave me some relief.
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