I have been watching this site religiously after my TBI and learnt and followed lots of advices from newbies to veterans. My story can be long and pardon me if it is rhetoric. I try to split into 3 parts.

Part - I

I hit the back of my head in May 2009 (2 years ago , yes) and had a skull fracture ( I think since Neurosurgeon said I didn't and Radiologist reported I had a fracture) and my brain bounced. In that force my brain internally hit the skull in front at two places (frontal and temporal lobes) and caused bleeding on the brain ( Brain Contusion). I also had severe concussion which caused Post Concussion Syndrome.

When I admitted to the hospital immediately after it happened the doctors didn't even found out in the beginning (no CT scan nothing) and I don't remember anything (amnesia for 8 hours) and seemed like I was conscious (GCS -15 according to the report) during the whole time and they discharged after few hours. I had severe headache and dizziness and went to my doctor after 4 days then she immediately ordered a CT scan and found out about the brain injury.

Doctors told me I can keep going to work and if things get worse asked me to come back. Then only I came to know I should have rested for few weeks and gradually returned and no one told me. I

I was progressing slowly for 5 weeks (fatigue, dizziness, headaches all going down). One day I had heart palpitations and about to faint while driving and called 911 (ambulance). Again went to hospital and stayed for 3 days and ran all the tests and nothing significant besides the MRI showing minimal encephalomalacia. They discharged saying do whatever I can tolerate.

But this time my symptoms became severe and my condition went to hell that day and until this day most of it stayed. Some got better and some got worse. I rested for 1 year and went around with docs/therapies and didn't see much improvement. Luckily I got a job to work from home and I work at my own pace. I don't have any issues with memory, didn't lose any of my computer skills etc., I am a computer engineer and I do some thinking in this job but not like my pre-injury where I did some complex stuff and still can do it.

Part - II - Symptoms

1. Head pressure like hangover-heavy headed (24/7)/ intermittent head aches
2. Near fainting episodes when I go to stores, in malls or wherever there is too much stimulation
3. Visual disturbance (unable to focus when I talk to someone, tired eye, dazed etc.,)
4 24/7 Dizziness and because of that walking like a very old man (lot of old people are much better me)
5 Occasional vertigo
6. Severe ringing in the left ear
7. Nausea
8. Neck pain on the right side
9. Pins and needles pricking sensation in the body
10. Imbalance
11. Low appetite
12. Visual dizziness (sometimes just moving eyes causes dizziness/discomfort)
13. Light and noise sensitivity
14. Sleep disturbance
15. Severe pain on the right leg
16. Smell disorder - Parosmia (everything smell and tastes different at times - but some times I do smell and taste close to normal)


Part - III - Therapies/Medications/Doctors etc.,
. Primary Care Physician
2. Four Neurologists (2 top doctors)
3. Three ENT specialists (1 top Neuro-Otologist)
4. Two Psychiatrists
5. One Cardiologist
6. One Neurosurgeon
7. One Endocrinologist
8. One Developmental Optometrist
I am losing track of how many I have seen.....

Tests:
1. Several MRI/MRA of brain, ear and cervical spine
2. Many CT scans
3. Several blood works
4. Lumbar puncture (lots of tests on spinal fluid and nothing showed up)
5. ECG, EEG, QEEG, Holter monitor etc.,
6. Ear tests
Brain softening in two places because of the injury (brain bleed) showed in MRI.

Medicines:
1. Elavil
2. Wellbutrin
3. Cymbalta
4. Lexapro
5. Lyrica
6. Neurontin
7. Epidrin
8. Xanax (helps somewhat and taking minimum dosage)
9. Klonopin
Except Xanax/Elavil everything made my condition worse. Right now I take only Elavil (10 mg at night)

Alternative therapies:
1. Neurofeedback
2. Physical Therapy / Vestibular rehab
3. Acupuncture
4. Chiropractor (upper cervial and normal - 15 + sessions)
5. Vision Therapy
6. Vitamins, supplements etc.,
7. Hyperbaric Oxygen Therapy
8. Meditation
9. Trigger point/Myofascial pain release
10. Cranio-sacral therapy


Therapies/med helped (best to ok order):

1. Trigger point/Myofascial pain release but temporary (went for 50 + sessions)
2. Xanax - also temporary and my body got used to it and no effect with my minimal dosage.
3. Neurofeedback (non-volitional from experience TBI Psychologist who treats head injured iraq army veterans) - again helped only temporarily with my smell disorder in the beginning and made me calm as well.

Now I am not on any therapies since I can't get permanent relief and therapists getting tired after few months if I didn't see any benefit. I need some advice if any one has for my following symptoms which pretty much disabling me. I am also getting suicidal and anti-depressants doesn't help since all of them increases my dizziness, nausea and fatigue. I also developed IBS-D which makes things worse.

Perpetual dizziness (non-vertigo)/low level nausea, constant facial pain/forehead headache, terrible fatigue.

Seeing a new physical rehab director on my PTs advice who knows very well about mTBI/PCS and said he is considering to do BOTOX on my head/neck. I am ready to do anything at this point. If I can take a flight I am even considering Stem Cell Therapy.

I can keep going on but I cut down now and thanks for reading my rant. Is there anything else I can try?


S.