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Need help with boyfriend's post concussion syndrome

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Old 02-01-2016, 04:12 PM   #1
fluentinsarcasm
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Default Need help with boyfriend's post concussion syndrome

Hello everyone. First, I want to say that this is an amazing community. I've read a lot of threads on here and found a lot of valuable information. Y'all have honestly been a godsend.

Right now, I've got some specific questions and am in desperate need of help. My boyfriend (21 years old) has had around 30 concussions since he was a child. He was a semi-pro hockey player and also played football and skateboarded. He recently got another concussion at the beginning of January when a guy attempted to mug him and hit him in the head with a gun. We've been to the ER like 4 times since then because of his symptoms--first to treat the concussion, then because he was violently vomiting and couldn't eat for like a week, then because of severe head pain, and lastly because he kept losing consciousness, couldn't walk, was disoriented, and had slurred speech.

They've done CTs every time except once, and there's no sign of a brain bleed, but he's really struggling. He's on medicaid, and getting a competent doctor to see him is practically impossible. I've got an appointment for him on Feb 15 for a new PCP who said they'd refer him to a concussion clinic, but in the meantime, I don't know how to help him. On his bad days (disorientation, passing out for a few minutes at a time, no balance, slurred speech, etc), he fights sleep. He says it's because every time he closes his eyes, he sees these horrible images from trauma in his past or fears he has now (he's got some past emotional/mental health issues too.) But the longer he stays up, the worse his symptoms get, and I just really don't know how to get him to try sleeping. It's also hard for him because he's in an incredible amount of pain, both in his head and also his stomach (he has a torn abdominal muscle had has had a bunch of GI surgeries) and his back, which has protruding discs and some other problems.

(Moral of the story here: Hockey ***** up your body.)

Does anyone have any advice? I'm chronically ill myself, so I get the good and bad days and I never take it personally when he gets combative, I just know he seems better after he sleeps but I can't GET him to go to sleep.

Also, any advice about pain management would be great. The doctors won't give him any narcotics because they say he's "too young" but Excederin just isn't cutting it. :/


Thank you so much!

Last edited by Chemar; 02-01-2016 at 05:08 PM. Reason: NT guidelines/language
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Old 02-01-2016, 08:49 PM   #2
kiwi33
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Hi fluentinsarcasm

Welcome to NeuroTalk .

My general suggestion is that you could encourage your boyfriend to give up activities which put him at risk of concussion - the brain damage from concussion is cumulative.

A retired football player here, with a long history of sport-related concussion, has been prescribed Aricept which he says has helped him. This is an option which your boyfriend could discuss with his health care team.

I hope that the referral to a concussion clinic will help him.

All the best.
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Last edited by kiwi33; 02-01-2016 at 09:20 PM. Reason: Added more information.
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Old 02-01-2016, 10:08 PM   #3
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Welcome to NeuroTalk.

Whoa. Frankly his condition as you describe ("disorientation, passing out for a few minutes at a time, no balance, slurred speech, etc") as well as his other difficulties sounds extremely serious.

For more support and information about PCS, please also check out the

Traumatic Brain Injury & Post Concussion Syndrome Forum

It also sounds as if he needs some professional help for his past trauma that you mention.

There can be many reasons for head pain or head ache after TBI. He needs to see someone who is knowledgeable. Ask for advice on TBI/PCS forum and give your general area as well. Also, there are numerous, excellent brain injury Associations in the US for both the injured and their families and caregivers. This link is one of many ...

http://www.biausa.org/state-affiliates.htm
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Old 02-02-2016, 04:56 PM   #4
fluentinsarcasm
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Quote:
Originally Posted by kiwi33 View Post
Hi fluentinsarcasm

Welcome to NeuroTalk .

My general suggestion is that you could encourage your boyfriend to give up activities which put him at risk of concussion - the brain damage from concussion is cumulative.

A retired football player here, with a long history of sport-related concussion, has been prescribed Aricept which he says has helped him. This is an option which your boyfriend could discuss with his health care team.

I hope that the referral to a concussion clinic will help him.

All the best.
Thank you for your warm welcome and response!

He doesn't play hockey competitively anymore--sometimes he'll play pond hockey, but it's far less physical than on the rink. The only sport he does now is weight lifting/body building, and he's aware of the cumulative effect--it's one of the reasons we think this most recent concussion is so bad.

Thanks for the advice about Aricept. I've been reading that ADHD drugs like Ritalin and Adderall can also help. I just hope we can get him into a concussion clinic. His previous PCP never referred him to a neurologist or anything. She was basically just like "eh, it'll go away on its own." His biggest problem is that he can't work right now because of all this, which leaves him on medicaid, and it seems like doctors don't have an interest in helping medicaid patients. :/
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Old 02-02-2016, 04:59 PM   #5
fluentinsarcasm
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Quote:
Originally Posted by Lara View Post
Welcome to NeuroTalk.

Whoa. Frankly his condition as you describe ("disorientation, passing out for a few minutes at a time, no balance, slurred speech, etc") as well as his other difficulties sounds extremely serious.

For more support and information about PCS, please also check out the



It also sounds as if he needs some professional help for his past trauma that you mention.

There can be many reasons for head pain or head ache after TBI. He needs to see someone who is knowledgeable. Ask for advice on TBI/PCS forum and give your general area as well. Also, there are numerous, excellent brain injury Associations in the US for both the injured and their families and caregivers. This link is one of many ...
You're not wrong--he's in rough shape, and we both know it. We've just been having a really hard time getting help for him. At the ER they never do anything except a head CT and fluids, and as I mentioned above, his previous PCP wouldn't give him a referral to a neurologist. It's extremely frustrating because he's suffering and it's like no one will help.

He does need help for his past trauma, but he's not ready for therapy. I gently bring it up every so often, but I can't make him go and he's more focused on getting out of physical pain first.

Thank you for the links and suggestions, I'll definitely look into them!
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Old 02-02-2016, 11:21 PM   #6
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Fluentinsarcasm, I reckon that you boyfriend is fortunate to have a loyal and supportive partner like you.

Please remember to look after yourself first. I have put that in bold to say how important I think that it is. It is not a selfish thing to do - if we don't do that then our capacity to care for those who matter to us can get messed up (something which I learned IRL).
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