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Coping with post-concussion syndrome?

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Unread 02-04-2011, 04:57 PM   #1
purple_blutack2108
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Question Coping with post-concussion syndrome?

About 2 months ago, I slipped on an icy pavement whilst walking home and hit my head pretty hard, 2 hospital trips later that evening (the first time they sent me home as they felt it was just a little bump on the head and was nothing serious!) and I was told that I'd received a concussion from my fall. 2 days after this, I passed out and ended up returning to hospital where I was told that I had post concussion syndrome.

Since then, I have had problems with major headaches, memory problems, fatigue, poor sleep, personality changes, lack of concentration/focus and motivation, light sensitivity, depression and occassionally difficulty finding words in conversation.

I've found my PCS really difficult to deal with as I don't feel like myself anymore and am finding it difficult to explain things to friends and family so that they can understand what is happening. Part of me feels like I'm a burden to them even though I know that's just not true, I just want them to understand what I'm going through at the moment.

I've just started my first year at university and am very concerned about the effect it has had on my work, I'm really worried that I may have to leave if I don't find a way to overcome this.

Can anybody give any advice which they think will help? Thanks in advance
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Unread 02-04-2011, 06:45 PM   #2
Jeffrey
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I'm very sorry to hear about your TBI, and what timing, starting college and all

I hope your recovery goes well. I've learned to try to move with extreme caution since my TBI, but minor accidents still happen, which seem to hurt more, and take longer to heal.

Plenty of sleep, low stress if possible, etc.

Mark will probably link you to the TBI guide as well.
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Unread 02-04-2011, 08:40 PM   #3
Mark in Idaho
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purple...

I to am sorry to hear of your struggles. As Jefferey said, check out the TBI Guide to learn more about your condition It is at www.tbiguide.com

Dealing with serious studies while attempting to recover for a serious concussion is a problem. the over-work the brain receives can make recovery take longer and feel much worse.

Does your school have a disabilities department? Here in the States, students can ask for disability assistance, tutors, note takers, extra time for assignments and tests, and quiet testing environments.

I know your struggles as I had to drop some classes as a result of a concussion during my second semester back in 1974.

Your symptoms sound like you copied them out of a PCS reference. You have all of the common symptoms. Even though every concussion is different, the symptoms are rarely anything but the normal symptoms.

As Jeffrey said, the key is good sleep, low stress and I would add, get good nutrition. No caffeine except maybe one cup of coffee or caffeinated tea in the morning. Do a search on this forum for nutrition or vitamins.

You will find a list of supplements that help the brain clear out the toxins that result from the injury. Only when the brain has cleared out the toxins can it begin to heal. It will likely be slow progress since you did not recover in the first few weeks.

If your struggles get in the way of success with your studies, it might be worth asking for a deferral until the next semester. Or, maybe drop your tougher classes and taker a lighter load until you are doing better.

Relax and rest, anxiety is the worst thing for recovery.

My best to you.
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59 years old, retired due to disability, married 34 years, father of three, grandfather of four, Suffered a serious concussion at 10 years old (1965) stopped most driving after concussion at 46 years old (2001), Post Concussion Syndrome/Multiple Concussion/Impact Syndrome with PTSD, immediate/short term visual and auditory memory problems, slowed processing speed, visual/auditory processing difficulties, insomnia, absence seizures, OCD, 14 concussions since first concussion at 8 years old, Taking paroxetine for 14 years and gabapentin for 12 years. Added L-Tryptophan and stopped paroxetine after 3 months of tapering. I currently take 100 mgs of 5-HTP AM, 500 mgs of L-Tryptophan at noon.

As of Nov 15th, Due to high stress issues resulting in PTSD, docs put me on 3 meds. Clonazepam but only for 30 days ) .125 mgs twice daily (Doc presc. .25 mgs 2x daily but half a tablet is good) , citalopram (Celexa), an SSRI , and olanzapine (Zyprexa), an atypical anti-psychotic that usually causes weight gain before bed. I lost over 30 pounds since mid July. It just stopped the weight loss. Took me off the gabapentin. I am feeling better than I have in years.

This great feeling only lasted a month. Back to the same old PCS doldrums.

May 2014, I am off the olanzapine due to a 6 fold price increase. Back on 600 mgs of gabapentin before bed.

I am also taking L-Theanine to help with GABA regulation


"Be Still and Know That I am God" Psalm 46:10
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Unread 02-04-2011, 09:30 PM   #4
purple_blutack2108
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Thank you to both of you, your help is highly appreciated

Jeffery, I know what you mean, not long after my accident we had a heavy bout of snow and the last thing I wanted to do was to leave the house as I was scared of falling and hitting my head again.

Mark, thank you for the link, I shall find some time to read over the TBI guide when I get the chance.

My uni has a student services department which has been helping me to get extensions for my assignments, I also have a personal tutor who knows about my fall and has been very helpful with regards to my studies over the past couple of weeks.

Do you have any tips on how to improve sleeping regimes? I haven't slept properly in weeks and it's one of the main things I'm concerned about in terms of aiding recovery.

Thanks again!
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Unread 02-05-2011, 12:11 AM   #5
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One of the things that impacts sleep, at least for me, is getting my mind to settle down. I use visual and auditory stimuli to help with this. Usually, I watch something that is not too stimulating on television and just try to relax. I turn the volume down and the lights off.

I also will use music to get settled. I watch videos of Celtic Women. Oddly enough, even the upbeat music and singing allows me to get settled. The important thing is to provide something for your mind to do that does not require active cognitive thought.

It also is important for me to get VERY comfortable. For me, this means soft clothes, sheets and blankets. I need to be the proper temperature. I sleep in all cotton with cotton sheets and a soft acrylic blanket. In the beginning, I even wore chenille gloves so my hands felt warm.

If I am in my reclining chair, as I start to drift off, I will notice that I am drifting off and get up and go quietly to bed. My bed has an electric mattress pad to prewarm it. I turn it down and get in bed and am almost instantly asleep. If I do not fall asleep quickly, I may get need to get up and start over or just sleep in my recliner.

I have been doing this sleep process for 6 years. Before then, sleep was a miserable event each night. I also have to take a drug, Gabapentin, to help my body and brain settle. Otherwise, my body starts to jerk as I drift off to sleep. This and my central sleep apnea are unique to me. Others with PCS may have breathing problems during sleep. If the brain does not get good oxygen levels with good sleep cycles, it cannot heal.

These techniques work great for me. Others may need to experiment to find their own system of sleep hygiene. The key is to reduce any stimulation that keeps the brain awake. The problem is that concussion often injures a system in the brain that filters out stimuli. This ends up keeping the brain awake. Reducing any stimuli with behavioral and environmental means can help solve this problem.

Hope this helps.

My best to you.
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Mark in Idaho
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59 years old, retired due to disability, married 34 years, father of three, grandfather of four, Suffered a serious concussion at 10 years old (1965) stopped most driving after concussion at 46 years old (2001), Post Concussion Syndrome/Multiple Concussion/Impact Syndrome with PTSD, immediate/short term visual and auditory memory problems, slowed processing speed, visual/auditory processing difficulties, insomnia, absence seizures, OCD, 14 concussions since first concussion at 8 years old, Taking paroxetine for 14 years and gabapentin for 12 years. Added L-Tryptophan and stopped paroxetine after 3 months of tapering. I currently take 100 mgs of 5-HTP AM, 500 mgs of L-Tryptophan at noon.

As of Nov 15th, Due to high stress issues resulting in PTSD, docs put me on 3 meds. Clonazepam but only for 30 days ) .125 mgs twice daily (Doc presc. .25 mgs 2x daily but half a tablet is good) , citalopram (Celexa), an SSRI , and olanzapine (Zyprexa), an atypical anti-psychotic that usually causes weight gain before bed. I lost over 30 pounds since mid July. It just stopped the weight loss. Took me off the gabapentin. I am feeling better than I have in years.

This great feeling only lasted a month. Back to the same old PCS doldrums.

May 2014, I am off the olanzapine due to a 6 fold price increase. Back on 600 mgs of gabapentin before bed.

I am also taking L-Theanine to help with GABA regulation


"Be Still and Know That I am God" Psalm 46:10
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Unread 02-08-2011, 03:40 PM   #6
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You might try melantonin its a herb that is a natural sleep helper.

Its used for helping to sleep in many situation.

Good luck.

Donna
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Unread 03-22-2013, 09:32 AM   #7
dbg1
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Frown I really need support and someone to relate to

I'm going through the exact same thing and REALLY need someone to relate to. Nobody understands and I feel SO alone. This is the worst I've ever felt in my entire life.


Quote:
Originally Posted by purple_blutack2108 View Post
About 2 months ago, I slipped on an icy pavement whilst walking home and hit my head pretty hard, 2 hospital trips later that evening (the first time they sent me home as they felt it was just a little bump on the head and was nothing serious!) and I was told that I'd received a concussion from my fall. 2 days after this, I passed out and ended up returning to hospital where I was told that I had post concussion syndrome.

Since then, I have had problems with major headaches, memory problems, fatigue, poor sleep, personality changes, lack of concentration/focus and motivation, light sensitivity, depression and occassionally difficulty finding words in conversation.

I've found my PCS really difficult to deal with as I don't feel like myself anymore and am finding it difficult to explain things to friends and family so that they can understand what is happening. Part of me feels like I'm a burden to them even though I know that's just not true, I just want them to understand what I'm going through at the moment.

I've just started my first year at university and am very concerned about the effect it has had on my work, I'm really worried that I may have to leave if I don't find a way to overcome this.

Can anybody give any advice which they think will help? Thanks in advance
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Unread 03-22-2013, 01:27 PM   #8
Brain patch
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Mark, thanks for these two posts. The link to the survival guide is great. I appreciate it. I do the same sleep process as you. Soft cotton clothing is a must. I found the memory foam mattress to be a lifesaver with chronic pain. I listen to music, meditate then put in earplugs and cover eyes. If not asleep soon I have to get up and start over because my brain starts spinning out with racing thoughts. Never thought of gloves. I may try that. I have to wear all clothing from the store called hollister as I have found they have the softest, most comfortable clothes ever.
Db or sorry I don't remember your screen name. You are not alone. We all here have been and are going through these same struggles. We know what you feel like about having no support and feeling alone. This is the most challenging situation I have ever had. We are all here to support you. Don't count on the people around you to understand or support you because they don't. I know this is very hurtful. I wish I had better answers for you. That was one of the hardest things for me is to not have others understand and loose all my friends, fiancι, daughter, brother support or understanding for me. Hang in there.
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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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Unread 03-22-2013, 02:00 PM   #9
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Purplebluetack,

We all have different experiences with PCS and I have had very similar ones to yourself. The turning point for me was when I hit rock bottom and realised that my mood was completely flat. I was prescribed Cymbalta and I instantly felt better in a matter of days, started sleeping, the headaches reduced, I stopped worrying about symptoms and with this realised I am going to get better and sure enough I mostly have done. The psychological symptoms of PCS feed into the physiological symptoms and vice versa, so reducing anxiety and stress is crucial for recovery, at least it was for me!
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