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Post Concussive Syndrome 7 yrs & counting?

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Old 03-08-2015, 11:58 AM   #1
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Post Concussive Syndrome 7 yrs & counting?

I'll try to make this short. I wrecked a quad about 7 yrs ago. I was wearing a helmet luckily because I remember my head bouncing off the ground. I was knocked out about 5 mins. My now husband was on the back but was okay. My parents on another quad. I was very disoriented & remember a ringing sound. I couldn't remember who I was, who they were, nothing for about an hour. Everything came flooding back when I seen our home. I remember being in allot of pain. I didn't have insurance so I refused to go too the hospital. I slowly got better or so I thought.
About 2 yrs later pain hit. Started with pain from the bad disk in my back (from another past injury). Then my neck pain which is usually excruciating. I have all over pain, always feel sick & tired ect. But I had issues before the injury. Anyhow, I was diagnosed with Fibromyalgia & Nueropathy. Also been told that my dissociative disorder is from ptsd, I also have Anxiety & told I have depression but anyone in my situation would.
I also get extremelly sick. For example I was in the ER recently after 2 days of voliting & it not stopping. I get so sick just a sip of water won't stay down & 99% of it is stomach acid. I also get extremelly painful headaches. Anyhow I get sick like this allot but it usually stops after a day. That time it continued. After they stopped the vomiting I then slept about 5 days straight only to wake up to take a drink of water & use the bathroom then back to bed. I was completely out of it. Then at night it felt like a nerve running up the left side of my neck & a bunch of nerves branching out through my skull. The pain was bad & I could barely sleep for quite a few nights because each night when I layed down the pain got intense. That finally got better slowly. I think that's because I was able to keep all my meds down finally. Then I was walking in the living room & it was like I was being pulled too the left & took me a few seconds to stop because it's like I didn't know what to do & wasn't in control. Another day I was standing up & noticed my upper body was tipped too the left (not slightly tipped either). I stood up straight just fine but thought that was weird. Another day I got really dizzy & catching myself grabbing chairs while feeling like I was gonna black out & collapse. It passed finally. I haven't problems like that since.
It wasn't until last year after some research that my neck pain could be from the accident. I was seeing a chiropractor for my bad disk in my lower back about the time my neck pain started. Then I noticed I have what feels like a bone/hard lump at the bottom of my skull on my spine in my neck. At first I thought it was normal & I hadn't noticed it before. But I can't handle pressure on it so I started feeling my family's necks & they don't have it...
I had 2 doctors butting heads over who was going to order the mri on my neck so I finally gave up. Then I asked to see a Nuerologist & after 3 months of waiting I had an appt. Not long before that appt I had went to the ER & having all those new issues so I was really scared & looking forward to seeing a Nuerologist .. 2 hrs before my appt I got a call from them saying they are referring me to a Physiatrist. I was devastated. They atleast got me in a week later. But when I seen him he was the worst doctor ever, long story short I filed a complaint against him.
But now as usual my quality of life is not good. My kids have missed out on a healthy mom. I can't do much. When I do go places as a family it takes days to recoup at all. I could go into many more details but this is long enough.
The one good thing about seeing the Physiatrist is he mentioned that he thought I had Post Concussive Syndrome but that was it. I did some reading & I have all the symptoms.
But how do I get a diagnosis or treatment when I can't seem to get through to doctors just how sick I am? They act like I'm just supposed to accept that I have Fibromyalgia & deal with it. But it doesn't explain everything I'm going through. Like I said I have many more issues. Like my memory, I feel like I'm going nuts because I can't remember stuff that just happen mins beforehand. It's bad... But just one of my many issues.
I deal with terrible neck pain, have had multiple neck injuries in my life, have a disk or something extruding from my neck yet I can't get anyone to order an MRI!
I'm at a loss of what to do. Over the years I felt like giving up many times. But I'm stubborn & always have hope I will finally get the help I need. But now it just seems hopeless. It's amazing just how poor our health system is!
Btw, I always feel like I have head pressure & a mild headache. It doesn't take much activity for a headache to really hit, to make pain worst, to make fatigue become lethargic, or to make me very sick. Stress will also cause these problems to get worst.
I just need ideas of what to do if anyone has any?
Fatigue & Derealization~ 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia~ 2009

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Old 07-22-2015, 10:08 AM   #2
Corky Painsman
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Re: Post Concussive Syndrome 7 yrs & counting?

Your story has a large ring of similarity to it. I too was diagnosed with post concussion syndrome after an accident 8 years ago and struggle daily as yourself. I am only getting an MRI scan this Friday after lots of pushing and possibly only then because they think I may have had a silent stroke. So my advice is don't give up! keep pestering your doctors and consultants. Remind them it is your health that is in the balance not theirs and so you are the one who needs the answers.
Regarding the memory that is one of my struggles too I have found using the reminder function on my phone very helpful. We have also put up a small blackboard in the kitchen for the family to leave me messages or reminders and I use Google calendar for Everything!! and it is linked to all of my families calendars too. I hope even some of this is of help. Its not easy I know but don't give up never let the pain win.

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Old 11-23-2015, 12:53 AM   #3
Join Date: Nov 2015
Location: New Zealand
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ItsAllInMyHead7 HB User
Re: Post Concussive Syndrome 7 yrs & counting?

I'm 18 years on from a car accident in which I sustained a 'moderate' brain injury. I have all the same symptoms as yourself plus a few others, no energy - every day feels like an ordeal to get through, I have a lower flash point, my thinking is more black and white and I struggle to find words. I was given a book to read called 'It's All In My Head' by Paula Kamen. If you haven't already please give this book a read it helped me in many ways but mostly by reassuring me that I'm not the only one going through this. One thing I do to try and help my memory is puzzles, crosswords and games that require you to use your memory. I also use my phone to remind me things and by doing all this I think over the years my memory has got better. By the way I'm in New Zealand.

Last edited by ItsAllInMyHead7; 11-23-2015 at 01:59 AM.

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Old 09-02-2016, 11:17 AM   #4
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Location: Everett, Washington, USA
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Re: Post Concussive Syndrome 7 yrs & counting?

I've had three major concussions and my symptoms are similar with chronic pain for a dozen years and diagnosed with fibromyalgia. I believe my brain processes pain differently because of the brain injuries. After a one year course of biofeedback my cognition improved and lessened the anxiety. I suggest you see a naturopathic physician to have your underlying chemistry checked. Traditional doctors are schooled to dispense pharmaceuticals, that's what they know. If you give your body what it needs, it will heal itself. That's been my experience. Good luck to you!

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Old 09-02-2016, 11:19 AM   #5
Join Date: Sep 2016
Location: Everett, Washington, USA
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Re: Post Concussive Syndrome 7 yrs & counting?

I found biofeedback helped my memory tremendously. I went weekly for 9 months and I highly recommend it.

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