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


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Old 08-24-2019, 05:31 PM #1
claynorian claynorian is offline
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Exclamation 7 months post traumatic headache and still getting worse

Hey guys. My pain is getting worse and is literally unbearable. This all started 7 months ago, after getting hit hard in a rugby game and then 3 days later when I was weight lifting all my symptoms came on.

SYMPTOMS: I have had some what positional headaches over the past 7 months (that have become less positional as time goes on). My headache feels less like a normal headache, and more like a heavy pressure in my head. My brain feels like it is getting weighed down, like someone tied a 50 lb weight to it. It feels swollen and as if it is about to explode. I don't get multiple head aches, its just one continuous head ache that has been here since February. Most of the pain is in the middle to base of my brain, but I also have quite a bit of pain deep in my brain, behind my right eye. It is enough pain to make me want to go to the ER every day but they don't help and give me pain meds which do absolutely nothing.

The head pain is constant and never goes away, I have had the same head ache since February and it has only gotten worse. However, over time I feel my head pain has become slightly less positional and is just always between a level 6-8 pain where as it used to be between a 2-7 pain.

My other symptoms that are secondary to the head pain is nausea, and ringing in my ears.

WHAT I HAVE DONE:
I have tried many different treatments for concussion/ brain injury. I have done:
-over 50 sessions of hyperbaric oxygen therapy
-sensory deprivation tank
- chiropractic acupuncture
-NUCCA chiropractic
-upper cervical spine chiropractor
-physical therapy
-counterstains physical therapy
-cranial sacral therapy
-massage therapy
- cognitive behavioral therapy: counseling
- functional neurology (vestibular and ocular therapy at Imagine X)
- did frequency specific micro currents
-saw a neuro endocrinologist
- pulsed electro magnetic field therapy
- E-Stim at neurofield
-facet injections (MBB block of C2 and C4)
-SPG block
-trigger point injections
-occipital nerve block
-have been to the Amen clinic
- have been to UCLA brain sport clinic
- have been to multiple neurologists, for a second opinion
- have been to a CSF leak specialist
- have been to pain management doctors
- tried meditation
-I also got a blind epidural blood patch to test and see if it was a CSF leak-however it did not help
-saw a migraine surgeon: he did peripheral nerve blocks that did not help

-I also tried numerous amounts of migraine/pain medications that did NOTHING: sumatriptan, rizatriptan, tramadol, topamax, butalbital aspirin caffeine, nortriptyline, memantine, tizanidine, ibuprofen, Tylenol, and a Gamma Core device (and tons of supplements).


SCANS IVE DONE:
Testing for possible CSF leak: I have had a brain MRI with contrast and it showed no signs of intracranial hypotension. I also had a MR mylogram showing no leak and a brain MRA that was clean.

Testing for concussion: MRI with contrast of my brain, MRI without contrast of my brain, MRI of cervical spine without contrast, stand up MRI of cervical spine without contrast, MRA of brain without contrast, SPECT scan, X rays of cervical spine, EEG of my brain, and blood tests done--- all showed clean/normal

I cannot handle this pain. It has been 7 months of unbearable pain that has debilitated me and makes me lay in bed all day. It has caused me to drop out of school and military. Doctors just say I have a migraine because nothing shows up on my scans, but I KNOW its something more. I don't have any cognitive issues such as memory loss, speech problems, balance issues, or concentration problems. I am not sensitive to sound. I literally just have a insanely awful head ache/pain.

Anyone have recommendations they can offer to me or have experienced similar stories?
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Old 09-02-2019, 07:20 PM #2
DrewDigital DrewDigital is offline
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Sounds like this situation is stressing you out, given all the medical help you sought. Try to relax and rest.

Lower your activity to a level that you can tolerate comfortably with minimal pain. For most people that's just quiet time around the house but in more severe cases that may mean bedrest. Once your condition stabilizes and begins to improve, then gradually increase your level of activity. Use the pain as a gauge of how much you can do.

Lay off the pain meds. As you can see, they don't help and probably make it worse. Try curcumin and krill oil instead.
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Old 09-18-2019, 11:55 AM #3
LettingMyLightShine LettingMyLightShine is offline
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My MRI and MR Myelogram turned out okay as well, but a blind blood patch FIXED the same head pressure you describe, so I did have a CSF leak. I would see if I could get a blind blood patch if I were you. My symptoms were just like yours except laying flat did alleviate the pain. I know with time, the positional aspect can go away with a CSF leak. Also- 20% of people’s imaging will come up negative even when they do have a leak. Leaks are elusive.


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Old 09-19-2019, 09:34 AM #4
Mark in Idaho Mark in Idaho is offline
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Have you tried an anti-inflammatory diet?

Or combining maximum dose aspirin and Tylenol. It is my go to for my worst headaches. Excedrin is aspirin, Tylenol and caffeine. I just combine the aspirin and Tylenol
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Old 09-29-2019, 10:44 PM #5
miss2000 miss2000 is offline
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Exclamation Imagine x and functional neurology

Hi there!! Thanks for your contribution. I’m here 2 months post concussion, haven’t been able to leave the house much either.. for headaches, I found motherwort tea, or any relaxing teas help a bit, also CBD oil, cannot do any meds as I killed my stomach with them and don’t want to take prescribed antidepressants to make things even worse ..also screen time significantly worsens a headache as noticed
I also have a headache when lying down - back of my head is throbbing when I do . I m currently seeing a physical therapist for my neck where I have muscle spasm and tightness, and arthritis . Check your neck ?

I have been researching about functional neurology and Imagine X or Minnesota Functional Neirolgy center; going to see dr Carlsen in Massachusetts (also functional neurologist ) since she is under 2 hours away I want to stay there.. so I had a question: how much would you recommend a functional neurology ( I’m considering doing a week intensive for balance, lightheadness, dizziness and headaches...? Thank you so much and hope your headaches r going down
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Old 01-25-2021, 04:13 PM #6
Gettingbetter31 Gettingbetter31 is offline
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Hi
Did you end up going to a Functional Neurologist? If so, which one did you choose and how did it go?
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Old 01-26-2021, 12:43 AM #7
Acrobat Acrobat is offline
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This is a helpful link

https://www.acnb.org/DoctorLocator.aspx
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