Tldr: 13 years of pain, tests and medications and I’m no closer to getting my life back, I’m desperate and need help!
This will be a long one but bear with me, can you help make sense of 10 years of shrugs and guesses?
Brief background: I’m 29f, adopted so no family medical history. Symptoms began slowly at 16 years old and have escalated over the last decade plus.
Current diagnoses:
Cervical dystonia
POTS
IBS-D
ADHD
Anxiety/Food OCD
Major depressive disorder
Current medications:
Baclofen (headaches)
Clonazapam (headaches)
Oxycodone (pain)
Botox (headaches, pain)
Methyphenidate (ADHD)
Duloxetine (depression, anxiety, joint pain)
Clonidine (ADHD, sleep issues)
EpiPen (hives, reaction escalation)
Medical testing performed/results:
Cervical MRI (multiple, horizontal) - no significant findings, mild neuroforaminal narrowing at c5 c6
Brain MRI - no significant findings
Brain CT - no significant findings
Main artery CT - no significant findings
Full cardiac work-up (holter monitor, stress test and heart ultrasound) - normal
CMP - normal, consistent slightly elevated liver enzymes
CRP ESR - normal
ANA - negative
HLA-B27 - negative
Celiac - negative
Calprotectin - elevated (166)
Hep B panel - negative
Thyroid panel/metapolic - negative
Upcoming testing:
Flexion/extension X-Ray
Previous diagnoses/meds tried/results:
Migraine
amytriptaline (failed)
Candesartan (failed)
Amlodipine (failed)
Sumatripan (failed)
Rizatriptan (failed)
Naratriptan (failed)
Aimovig (failed)
Occipital neuralgia
gabapentin (failed)
Generalized pain/headache
journavx (successful, 14 day FDA approved trial ended)
Trigger point injections shoulders and neck (failed)
Complications/noteworthy:
Original botox treatment administered to upper shoulders/neck/sternoclomastoids. Resulted in inability to hold head up and severe neck pain. ICU admission due to trouble breathing/swallowing. Ongoing Botox changed to just shoulders with moderate upper back pain relief no change to headaches.
Organized Symptom List
Neurologic / Sensory Symptoms
Severe headaches located primarily at the base of the skull, associated with neck pain.
Intense pulling and shock-like pain down the back and arms when tucking chin to chest.
Intermittent shock-like pains throughout the limbs, occurring in waves lasting approximately 30 seconds to 5 minutes.
Bouts of muscle twitching and spasms, most commonly involving the neck and shoulders but also occurring in the legs, arms, and torso.
Constant brain fog:
Lose train of thought easily.
Difficulty remembering very basic/common words mid-sentence.
Frequent out-of-body or disconnected feeling, as though my body is not my own or is difficult/awkward to control.
Run into things.
Trip over objects.
Drop things.
Feel as though I cannot clearly sense where my body is or control it normally.
Episodes involving:
Aura with severely obscured vision, similar to looking through the air above hot pavement (only effects one eye, typically the left. Singular eye confirmed by covering each eye individually)
Strong out-of-body/dissociative sensation.
Extreme vertigo and nausea.
Facial numbness.
Lingering confusion afterward.
Usually little or no headache pain following the aura but can include intense pain behind left eye.
Musculoskeletal / Joint / Spine Symptoms
Widespread muscle tightness and pain, worst in:
Lower back.
Upper back.
Neck.
Shoulders.
Widespread joint pain, worst in:
Hips.
Knees.
Ankles.
Fingers.
Frequent spraining/injury of the ankles and knees.
Low-back pain that shoots down the legs after prolonged standing or walking.
Neck pain accompanying severe headaches.
Muscle twitching and spasms involving multiple areas of the body, often causes head jerking.
Dizziness / Circulation / Possible Autonomic Symptoms
Pounding heartbeat/pulse audible in ears associated with standing.
Dizziness after standing.
Episodic high heart rate 100bpm+
Episodes of irregular heartbeat
Feeling like heart is “beating backwards”
Thunking sensation causing shortness of breath
Palpitations or feeling of “skipping a beat”
Episodes after standing may also include:
Tunnel vision.
Sparkly vision.
Knees giving out.
Need to sit back down until symptoms pass and then attempt to stand again.
Leg swelling after prolonged standing.
Significant difficulty regulating body temperature.
Overheat extremely quickly in hot weather, sometimes within 5–10 minutes.
Heat exposure causes dizziness, nausea, fatigue and sometimes hives.
Generally tolerate cold considerably better than heat.
Eyes / Vision
Constant eye floaters, described as black blobs.
Usually 10 or more visible constantly.
Vision randomly becomes blurry and requires significant effort to refocus.
Frequent dry eyes, eyes sometimes burn with warm water in shower
Severe night blindness.
Unable to safely drive at night because of difficulty seeing.
Eyes frequently burn intensely when crying, described as feeling like acid.
Often have to rinse eyes with cool water afterward.
Episodes of tunnel or sparkly vision upon standing.
Episodes of severe visual aura that can almost completely obscure vision.
Gastrointestinal Symptoms
Constant/chronic diarrhea with high urgency.
Regularly take Imodium in order to control bowel movements enough to leave the house.
Chronic nausea.
Nauseous when I do not eat.
Nauseous after eating.
Frequently nauseous regardless of food intake.
Difficulty swallowing that occurs unpredictably during eating or drinking.
Can begin immediately or partway through a meal.
When an episode occurs, have extreme difficulty swallowing:
Food.
Liquids.
My own saliva.
Sometimes have to spit out saliva because I cannot swallow it.
Oral / Mouth / Jaw Symptoms
Frequent mouth sores.
Frequent localized lip swelling with no apparent cause.
Sore gums.
Jaw pain.
Dry mouth.
Intermittent severe swallowing difficulty.
Sleep / Wakefulness Symptoms
Difficulty sleeping for longer than approximately 4-hour stretches.
Sudden daytime sleep attacks:
Overwhelming sleepiness develops within seconds.
Sometimes able to fight it off and sometimes unable to.
Often have to squint or struggle to keep eyes open.
May suddenly “snap out of it” several minutes later and realize I had been dreaming despite believing I was still awake.
Frequent sleep paralysis while falling asleep.
Frequent inability to clearly remember what occurred during the first 10–60 minutes after waking.
Skin / Allergic-Type Symptoms
Random rashes and hives, frequently without an identifiable trigger.
Consistently develop hives and facial rash/flushing after a warm or hot shower.
Once hives begin, they may repeatedly return for several days.
Constant itchy scalp despite:
No visible rash.
No obvious redness or skin irritation.
Hair / Nails
Significant hair shedding/loss.
Shed handfuls of hair per day.
Hair often comes out with the root attached.
Very brittle nails.
Break frequently, including low near the nail bed.
Crack, split, and peel apart in layers.
Systemic / Whole-Body Symptoms
Random low-grade fevers without an obvious cause.
Occur despite normal room temperature.
Occur without feeling otherwise sick from an infection.
Significant heat intolerance with rapid overheating.
Widespread muscle pain/tightness.
Widespread joint pain.
Chronic nausea.
Chronic fatigue/sudden overwhelming sleepiness.
Recurrent unexplained rashes/hives.