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| Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS). |
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03-28-2013, 12:40 AM
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I've lost track of the number of times I've been accused of faking or exaggerating my medical problems. No person seems to be immune: I've had it from friends, family, medical professionals, and people for whom it's not even their business. Any special way you've found to deal with this?
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Passenger in auto wreck, mTBI:
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| "Thanks for this!" says: | Brain patch (03-28-2013) |
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03-28-2013, 12:53 AM
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Many of the "invisible" illnesses with chronic pain & symptoms get that same thing.
I guess you have to know inside yourself that it is real and these other people just don't really understand or know you as a person. But hopefully you have a few supporters that do, and trust what you are experiencing.
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Search the NeuroTalk forums - . |
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03-28-2013, 08:08 AM
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I lost many friends before I got a diagnosis. It was difficult for months trying to tell them this. Once, I was in the hospital, they finally got the idea. Every day, with hope and patience, I am getting better.
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College Student in Information Technology and avid PC Gamer, hit the back of my head against a bunk bed and went unconscious for 3 minutes back in 10-28-2012. Symptoms: Occipital Neuralgia. 2 MRI's and CT normal. Currently going through Paxil withdrawals, and psych has me on L-Theanine, Benadryl for zaps, and Lemon Balm. It has eased it by a bit, so I am continuing the treatment till 1 month from now. Made a 98% recovery on April 8, 2013 with only symptoms of pinched nerves/Occipital Neuralgia in the head and is being treated with injections and physical therapy. Was experiencing: Migraines, Headaches, Nausea and Vomiting, Panic Attacks and Anxiety, Depression, Major Insomnia, Brain Fog, Tinnitus, Lethargy, Loss of appetite, Major Heart Palpitations, Occipital Neuralgia has eased a bit. Vitamins and Medicines: , L-Theanine, Omega 3 Super DHA 900mg, Stress B-Complex Extra Strength, Potassium Gluconate 1000mg, Magnesium Malate 1250mg, Vitamin D3 2000 IU, Methylcobalamin B-12 5000 mcg, Vitamin C 500mg, Lemon Balm. Things that helped me: My Vitamin Regimen, Medication, Earplugs (Love these!), Nature Sounds, Hydrotherapy, Neck Pillow with Heat, Heating Pads, Resting, Being Outside! |
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| "Thanks for this!" says: | MiaVita2012 (03-28-2013) |
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03-28-2013, 08:27 AM
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I literally had to go threw my own war with numerous MDs that would try to give me pain meds, antidepressants etc ANYTHING TO GET ME OUT OF THEIR FACE!I tried one time and then declined so then they started with muscle relaxers.This one MD had me on 4 muscle relaxers @ same time
 I lost all my friends I was the combat queen and hated everything I had my family thinking I was on drugs Then I finally got a MD to get me to a Neurologist to get the diagnosis...even thow I did have to fight with him for a little time...but we finally got the test and diagnosis from my neuropsyc test.I was so close to even getting swept under the rug with neuro because of my attitude Then we get diagnosis and some friends,family and neurologist said this diagnosis explains it all! And thanks for this year and half war I have PTSD! Do not worry if people do not understand.Just focus on you!
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What Happened: In 2011 I was in a MVA . Symptoms: Physical: I am always cold in any season!!I cannot tolerate anything pressure on my head(sun glasses,hats)longer then a hour,Lock jaw/Displaced TMJ, Dropsey, Hands go numb, Arms go numb, back of head numb (when asleep),Muscle spasms in face & upper body,migraines, concentration headaches, dizziness, nausea, neck and back trauma (from accident), tinnitus, extreme light sensitivity, noise sensitivity, EXTREME fatigue, impaired vestibular system, balance off, Pupils NEVER equal, disrupted sleep cycles,speech problems. Cognitive: Cognitive Behavior, Brain fog, impulsivity, speech problems, word finding problems, slowed processing speeds, impaired visual memory, impaired complex attention Emotional: Unable to handle stress or overstimulation without getting extremely irritable or angry, easily overstimulated, MAJOR depression, major anxiety, Panic attacks Treatment so far: Treatment for PCS,PTSD,Depression & panic,Vestibular therapy, Physical therapy, Vitamin Schedule,Walking,No Dairy, No eggs, No caffeine, No artificial coloring, Sleep with 2 pillows, Very little sugars consumed, Eat healthy,No alcohol, Medications, limit stress and overstimulation. ~*~Learn to treasure yourself and your Divinity. Be willing to accept yourself completely. Be yourself, be graceful, be kind, be wild, be weird ... be true to yourself~*~ |
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| "Thanks for this!" says: | Brain patch (03-28-2013) |
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03-28-2013, 08:52 AM
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I had to deal with this years ago with my fibromyalgia and again now with PCS. Not surprisingly it's the same people that said things back then that are saying things now... but she looks fine... she just has to try harder and get over it....
I don't have a lot of good advice because I still find it very painful and hard to deal with! All I do is distance myself from those people. I don't even try to convince them. You have to try to ignore it for your own sanity. Just wanted to let you know that you're not alone in this one, unfortunately. I hope today is a good day. CC
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I'm a 39 year old, female, accountant. On July 2, 2012 I crashed my bike at the end of a 65KM road ride. I was fine that day but woke up the next morning to my current world. Ongoing symptoms include: dizziness, blurred vision, light and noise sensitivities, cognitive problems, uncontrollable emotions/depression/anxiety, headaches (but they're getting better), mental and physical fatigue, difficulty communicating and sleep disturbances. Currently seeing a fabulous Neuro Psychologist and vestibular physiotherapist and hoping to soon see a neuro ophthalmologist. I am currently doing 20 minute stationary bike rides daily, 20 minutes of meditating, 15 minutes of Lumosity and lots of resting. I have not been able to work or drive since the accident. The things that have helped me the most since the accident are vestibular therapy, gel eye drops (for blurred vision, sensitivity and dryness), amitriptyline (10mg), and meditating. I am finally starting to see some slight improvements and am hopeful! My brain WANTS to heal itself... I just have to let it and stop trying to get better! |
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| "Thanks for this!" says: | Brain patch (03-28-2013), MiaVita2012 (03-28-2013) |
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03-28-2013, 09:47 AM
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Friends come,
Friends go, And then there are some, Who never let you go. Family is Family.....For Life. And I will always love my wife.
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. Current: Changes of more insomnia, new reviews with findings of more Depression, tremors, vertigo, tinnitus, loss of focus, fatigue; SSDI - accepted on Depression, Cognitive Deficits; Seizures ruled out, mTBI changes including cognitive slowing/lapses. Medication update: Topamax 200mg twice daily it seems to minimize daily headaches to a 1-2/10 quality(I still know they are there); and acute headaches erupt without warnings. |
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03-28-2013, 05:51 PM
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Well I'll admit it, I crumble.
I've never had a problem like this before that was basically invisible or that I couldn't just push through no matter what. (I can't count the number of migraines I worked through in my lifetime because I can't bear to miss something at work) So I've never really experienced the pain of accusations, therefore I'm pretty highly sensitive to it. I cry. Pretty much every time. I think people are cruel. And then someone defends them saying they don't know any better, and I cry some more, because hurtful people get a defence team, but I don't. I find I expect too much, that people would be kind, and when they show differently I'm so hurt. It's been a wake up call. I need to be stronger, and let things roll off.
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About it: October 26, 2012 I fell backward on an icy parking lot at work. I was on Workers Comp for 9 months. My PCS : everyday headaches became once in a while headaches, and neck pain became manageable. Still have occasional mild dizziness, sometimes fullness in the ears, convergence insufficiency, sequencing struggles, short term memory struggles, verbal processing delays. CT neg, MRI neg. Therapies: prism glasses, acupuncture, icing neck, resting, supplementing, Elavil 20mg at bedtime. NEW: Completed 12 weeks of physical therapy and returned to work full time. About me: I'm a marketing manager, a mom with a blended family and wife to a heart attack survivor. I believe my brain injury taught me more than it cost me. I'm grateful to still be me! |
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03-28-2013, 06:26 PM
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I try to explain, and when that fails, I over-explain to blank expressions, and when that fails, I disconnect and distance myself. It's sad that people can be so judgemental.
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I have recovered my cognitive function, and I've overcome severe vertigo through sensory integration therapy. Wellbutrin has helped me escape depression. I have recently had a few stress-related migraines, as well as headaches stemming from eye strain. I'm also dealing with tinnitus, lack of stamina, extreme light sensitivity, and eye pain. Diagnosed with 9 different vision issues: convergence insufficiency, pursuit eye movement deficit, egocentric visual midline shift, photophobia, visual information processing delays, accommodative insufficiency, saccadic eye movement deficit, lack of coordination, and central peripheral visual integration deficit. *First concussion: October 2010. I was pregnant and got rear ended. I associated my mild PCS symptoms with baby brain and blamed my light sensitivity on allergies and dry eyes. *Second concussion: December 2011. I hit my head on a wooden beam, saw stars but did not lose consciousness, and I had very disturbing PCS symptoms but didn't go to the doctor. *Third concussion: August 2012. I caused a car accident as a result of PCS symptoms. Thankfully no one was injured but me. My husband confronted me, and I finally sought help and took medical leave from work. My symptoms worsened, and I developed severe vertigo. *Fourth concussion: November 2012. I was riding in a car with a friend and we were hit head on by a driver who lost control of her car. I didn't have a big increase in PCS symptoms. |
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| "Thanks for this!" says: | Brain patch (03-29-2013), MiaVita2012 (03-28-2013) |
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03-29-2013, 09:31 AM
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DFayesMom, I do the same thing as you. Sometimes I will let them see me when I am having a major problem with chronic pain. That always shuts them up. They may not understand what is wrong but they know it is very bad and best if they shut it. I am beyond caring what they think other than my family. Those are the only ones that I get upset about. They are really coming around though. Actually with my dad now having Shy-Dragers (double Parkinson's disease) they see that when you have a problem with your brain that you are unable to control certain things. They are learning. They are at least trying now. It is a huge relief.
Brain  don't let them bother you guys!
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Brain patch. . Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg. Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.) |
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03-30-2013, 09:57 AM
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Dear Kenjhee,
You may find it easiest to be the one in control and be the first to say that you know how hard it must be to understand symptoms that are unseen. But would they rather see an axe hanging out of your head? You are not alone even though it may temp. feel like it. We are all struggling with not being believed. The ones who do listen hold onto them because they must really love you.
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I am a 36 yr old female who has played football, as a hobby, for 13 yrs. In July 2012, during a game I was slammed to the floor by two angry guys who hit into me so hard that one of them broke their ribs. This knocked me back onto hard ground leaving me unconscious. I awoke to chronic head and neck pain, sickness and the inability to see or balance. The paramedics made me walk to the ambulance, instead of placing me on a spinal board, where I was taken to the ER. I was hospitalised with suspected brain hemorrhage for 1 week, then on complete bed rest for 1 month, in a wheelchair for 2 months. I have been left with PCS, moderate constant head pain, little short term memory, no memory of the accident, balance and sight problems, depression and exhaustion. The worst problem is collapsing regularly. This has finally been diagnosed as Hemiplegic Migraines , these cause my brain to regularly shut down when I am tired and I then feel the full effects of a stroke (without the bleed on the brain!!) of which the symptoms last 2-4 days. I have had 6 CT's, 2 MRI's and am under 3 specialists. I believe everyday is one more towards improvement. Mainly I believe in the power of acceptance not the weakness of complacency or resignation. |
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| "Thanks for this!" says: | Brain patch (03-30-2013), MiaVita2012 (03-30-2013) |
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