Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 05-16-2011, 05:20 PM #1
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Default TBI/PCS - Terrible symptoms - Perpetual light-headedness, nausea, fatigue etc.,

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.
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Old 05-16-2011, 06:29 PM #2
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I have almost every symptom you have. I'm not dealing well with it...now at 8 1/2 months. One thru 14 but not #12

I can barely go on the computer...hardly watch tv...no reading...i'm going stir crazy. I have 3 kids to take care of (well one coming home from college this weekend)

i've seen several neurologists...even a headache specialist. Nothing is making it better. Hoping someone here has some advice.

I also have a vibrating feeling in my head.

And...when I do go out...I suffer the next day or two -- do you?
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Old 05-16-2011, 07:49 PM #3
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I have been watching your thread and we have quite a few common symptoms. I am single, male, very early 40s and I stayed with my relatives for 1 year in the beginning and they have 2 small kids. I cannot entertain or do anything and hide in the basement. Later on my situation was causing trouble in the whole family relationship so I moved out and now I live in my own apartment with some assistance for which I pay (meals and cleaning). It is very quiet, nice park like setting etc., and thought my condition will improve. Nothing much changed and even I think it is getting worse.

I live in D.C. metro area and has access to all kinds of hospitals, therapies and I even have 2 insurances so mostly I don't even pay co-pay. All for nothing and no one can help so far. My recent rehab director seems to be very knowledgeable and even mentioned he went for a recent conference for mTBI/PCS and said I have to be persistent. Very frustrating since it has been 2 years.

I was suffering too whenever I go out. Also I have to take Xanax before I go out. Now I don't go out at all after I quit taking Xanax. Restaurants, malls, stores immediately makes me lightheaded like I am going to faint, headachy etc., Even talking over the phone I get headache and start perspiring in the armpit (when i am very dizzy). Bizzare. When I look at some one and talk their face slowly starts becoming blurry and I get brain fog. So I entertain no guests anymore and live in a hell. Pre-injury I was hardly at home and be happy when I can relax at home.

With t.v./computer I was like you for 3 months. Terrible I can understand. Looking at the wall doing nothing (ofcourse cannot sleep either) when the mind is racing is torture. Even now I can sleep 8-10 hours but every morning after I wake up and in 1 hour all my symptoms slowly settles in and stays with me until I go to sleep.

This is no way to live. I am not dealing well with my symptoms too and not sure how any one can. I honestly wish I lost my leg or hand than go through this unpredictability.
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Old 05-17-2011, 12:17 AM #4
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My Mood: TBI/PCS - Terrible symptoms - Perpetual light-headedness, nausea, fatigue etc.,
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Thanks for posting. Sorry to hear about your experiences.

Thank you for sharing what you've tried & the results.

Yes, this is extremely difficult, and very unpredictable.

All that gets me through this sometimes is a Bible verse like Philipians 4:7.
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Old 05-18-2011, 02:30 PM #5
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Yes...I'm with you -- I've been thru so much in the past -- 7 miscarriages, son extremely sick...but this is torture.
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Old 05-18-2011, 03:24 PM #6
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I am with you all. I have been through a major fracture in leg femur bone and bedridden (with pin traction) for 2 months in hospital and rigorous PT for 1 year, some minor fractures here and there, hernia surgery and completely recovered.

With this I am not expecting complete recovery anymore but to a level where we can do some what normal things with workarounds is all I am praying for. In the past 2 years I never had symptom free moment when I am awake. Even talking for few minutes and immediately the symptoms gets worse. Should I avoid people, outings, stores and talking for the rest of my life? I heard some PCS folks sought relief from marijuana and unfortunately I never tried those things pre-injury when all my buddies tried. Wish I tried them before. I tried once with a glass of wine. Next day was a disaster. No relief from anything except when I sleep. What a life?
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Old 05-18-2011, 11:24 PM #7
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Default treatment 1 month into PCS

I am 1 month into treatment for PCS. I am taking Topiramate (anti-seizure) and sertraline HCL (to lower adrenaline levels). I got instant relief from the over sensitive nervous system symptoms from the Topiramate so I love that. The sertraline I hate. Makes me feel high, lose verbal filter, I have a taste like sin in my mouth. I do realize that I need it though because I feel the difference when I've tried to take less. I can actually feel the adrenaline buzzing through my body like electricity and then I can't sleep. I can't handle the grocery store. It makes me nauseous and instantly sleepy. I haven't been driving although I think I could if I were alone on the road. Its the relative movement that disorients me. I have raised a son with severe ADHD, one with Aspberger's Syndrome and my youngest son was diagnosed with Panhypopituitarism 2 years ago. I was a Montessori teacher and studied Cognitive Science at UCI and Brandeis so I know something about learning and the brain. Some of the symptoms remind me of my toddlers with immature nervous systems. Some of it reminds me of ADHD. I decided I needed a therapy to gently bring my brain back or at least to train it to cope. So I went back to my Montessori roots where we put things in a child's hands knowing that it will speak to their mind. Natural light is soothing and nature again is full of patterns that the brain is hard-wired to recogize. I decided a garden would be a good project for me. My family was very relieved to see me take charge and have a focus. I started by asking for a gift card to a local nursery for Mother's Day. I planted in containers on a deck so I'm not tromping all over the yard. I can go out for an hour or so and then rest. I researched different plants, tools, etc. online. Made lists and planned the layout. My husband has taken me to several diffeerent nurseries in the area to buy plants. It has been a Godsend. I feel normal when I'm focused on it. None of it has made me feel overwhelmed. Will it translate to other parts of my life? I don't know yet. I am seeing a neurologist this month who is an expert in PCS.
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Old 05-19-2011, 10:54 AM #8
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graciesmum : you explained it very well than the doctors I have seen. These are the things I expected doctors to tell me after listening to my symptoms and then try out the medicines. All they were doing is throwing meds in a standard way. PCS means Elavil first, then keep going on anti-depressants. One Neurologist kept telling me I have nerve pain when I complain about dizzziness, nausea and fatigue. I even written down my symptoms and give it to doctors nowadays. They look at it only for few seconds.

Neurologists don't like if we suggest medicines. I sure going to ask my PCP for Topomax and she is the only one who listens to me and wiling to try. May be my nervous system acting up. Who knows? For some reasons my brain doesn't react well with SSRIs and I get suicidal thoughts, insomnia etc., Thanks for the suggestion.
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