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Help! Post Concussion Syndrome advice/vestibular concussion?

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Unread 07-06-2013, 07:04 PM   #1
Hoping4thebest84
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Default Help! Post Concussion Syndrome advice/vestibular concussion?

Hello! I've been using this site for months since my injury, and I've decided to finally register and start asking questions about this tricky and awful condition called PCS.

I was kicked in the head in Feb 2012 by a special ed student I was in charge of and since then I've had many health problems from the injury. Massive migraine-type headaches that originate in the right temple where I was kicked and a very bad tender spot behind my right ear. I've tried Topamax 100mg since I was on it two months before the injury to prevent intermittent migraines, although I was on 25mg before the injury and that didn't work at all, along with Neurontin 600 mg and all that did was help me sleep and then feel even more fatigued during the whole day. I thankfully found out about these lenses called Irlen Lenses that assist with light sensitivity, sensory issues, and reading. This has helped both my aspergers and brain injury immensely. However, I'm now off of all medications besides Remeron 45 mg to keep depression from getting me down. I've started on this supplement called Feverfew, Formula 303 and fish oil, which has decreased the headaches from about 30% over the course of the two weeks. I've purchased Migrelief and CoQ10 from Amazon, since it's helped so many headaches sufferers in the past. I was going to try Elavil, but I've decided to give the supplements more of a chance before taking a med that could cause serious side effects. My neurologist seems to be just throwing meds at me, and I'm sick of feeling not in charge of my body. I was extremely active before this injury, biking for hours and hours in the hot sun without health side effects, and desperately want to go back to the life I had before. I'm not working, and a settlement on my case is being decided now, which definitely adds to the stress. Thankfully I have a good support system and my boyfriend drives me everywhere I need to go along with using the disability public service called the Ride in the boston area.

I feel like I can get these headaches under control, that also affects me cognitively, I can slowly introduce intense exercise back in my life. I've tried the chiropractor for my neck issue (retrolisthesis) which I received from past concussions (I believe I've had about 4) and this one. This is the only concussions I've had serious problems with. The chiro has helped the muscles relax better but hasn't really helped with the headaches.

Whenever I ask my neurologist about the tender spot behind my ear, she dismisses it and says it's probably muscular. However, I've just read articles about vestibular concussions, and believe this is what I'm suffering from. Does anyone have any treatment advice for this? The tender spot is very painful to touch and it brings on more headaches. I want it to heal but I'm not sure what else I can be doing for it, that doesn't involve massive amounts of painkiller meds that just cause rebound headaches in the long run. Any advice would be much appreciated! It's been a long road, and I want this to end as quickly as possible. Thanks!
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Unread 07-06-2013, 10:21 PM   #2
Mark in Idaho
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Hoping,

Welcome to NeuroTalk. I'll try my best at responding to your post and questions even though it is difficult for me to read the long paragraph. Your pain behind the right ear is likely an upper neck issue. I see you tried a chiro. Most chiro's use treatments that can be too aggressive for this kind of an injury. Plus, a chiro adjustment is just the start. You also need to do home therapy including icing and disciplined posture behaviors to prevent exacerbating this injury during sleep and rest.

This tender spot is usually muscle spasms caused by the upper neck injury and related inflammation.

Have you read the Vitamins sticky at the top ?

The Formula 303 description looks odd. How can a homeopathic remedy be maximum strength ? Plus, the "proven relief for" sounds to be in violation of FDA regulations. The usual way to dance around FDA regs is to say "Reduces the symptoms of ........" Any time I see these claims without FDA approval, I question the product. F 303 is awful expensive for a homeopathic compound that means it has almost no measurable amount of the 'active' ingredient.

Most homeopathic remedies list the dilution factor. Arnica, a popular anti-inflammatory is diluted to equal one "molecule" of Arnica in an Olympic size swimming pool of water.

I suggest you get going with the full vitamin and supplement regimen or something similar and ice and protect your neck.

The fact that you have had 3 previous concussions suggests you may be suffering from Multiple Impact Syndrome, an accumulation of injuries that combine to make your brain and body struggle even more to recover. Each concussion causes more damage from the same level of impact force and it further limits the rate and top side potential of recovery.

You may need to put your return to intense exercise on a slow hold. You may be able to slowly introduce exercise then slowly build the intensity of effort. Do a search on this forum for Buffalo protocol to read the basic of their system for returning to intense physical activity. You can also Google "Buffalo concussion" but their web site does not necessarily describe the process as simply as those here who have researched or even be through the Buffalo protocol.

I am surprised that your are in settlement negotiations when you are still so symptomatic. I hope you get a good settlement.

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 500 mgs of L-Tryptophan AM, 500 mgs noon, and 500 mgs PM.


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 07-07-2013, 12:21 AM   #3
Jo*mar
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You got kicked in Feb 2012? And there is still a tender spot?

I assume they did x ray & maybe other imaging to check everything?
Might be wise to have some follow up imaging to verify, before settling, if that hasn't been double checked.

Do you have a work comp atty on your case?
Usually they don't settle until you are more or less at maximum improvement, or stable at least.

Is there talk of keeping long term medical open for this ,or just a lump sum payment and nothing else?

A lump sum sounds nice, but you need to do a loss of income, treatment & rx costs projecting into the future. It's a complicated situation so a good atty on your side might be worth it.
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Unread 09-13-2013, 10:28 AM   #4
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Mark I'm not sure how to sta my own Reply but I wondering if you would have some advice about my brain injuy
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Unread 12-28-2013, 06:45 PM   #5
vera13
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Hello all. I was in a car accident on 12/07/2013. Cat scan negative. Diagnosed woth a minor concussion. Its been 3 weeks to the day and I still feel foggy. I can't seem to shake that one symptom. My primary doctor said I have post concussion syndrome. He said this foggy feeling can last 6 weeks or so. Wheb I asked if there was something I cam do to make it feel better he said no. I just need time to heal. Does anyone know if vitins help with the fogginess or is there something you cam do to relieve it at all. Thanls!!!
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Unread 12-28-2013, 07:42 PM   #6
Mark in Idaho
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vera

Welcome to NeuroTalk.

The Vitamins thread at the top is a good way to support your injured brain. The foggy brain is a common symptom. It is your brain telling you to rest. I don't mean sleep or in bed just lower your level of cognitive and physical activity. Limit sensory stimulation, easier now since Christmas is past. The sensory over-stimulation of the Christmas season is rough on a concussed brain.

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 500 mgs of L-Tryptophan AM, 500 mgs noon, and 500 mgs PM.


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 01-01-2014, 07:37 PM   #7
vera13
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Quote:
Originally Posted by Mark in Idaho View Post
vera

Welcome to NeuroTalk.

The Vitamins thread at the top is a good way to support your injured brain. The foggy brain is a common symptom. It is your brain telling you to rest. I don't mean sleep or in bed just lower your level of cognitive and physical activity. Limit sensory stimulation, easier now since Christmas is past. The sensory over-stimulation of the Christmas season is rough on a concussed brain.

My best to you.
Hey mark...thanks for the information. The foggy brain is thr only symtom that I have. My doctor was trying to give me antidepressants and dramamine but I choose not to take them. Its been 3 1/2 weeks now since the accident. I know foggy brain is normal but is it normal for this long? How long can this last for?
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Unread 01-01-2014, 08:40 PM   #8
Mark in Idaho
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There is no normal in concussion recovery. Be thankful that your only symptom is foggy brain. Reducing sensory stimulation and any form of stress will give your brain a break so it may be able to overcome the foggy brain. Think of the foggy brain as your brain telling you to rest.

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 500 mgs of L-Tryptophan AM, 500 mgs noon, and 500 mgs PM.


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 01-02-2014, 02:40 PM   #9
praisinginpain
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Have you tried vestibular exercises? My doctor has me doing them, and they've been slowly helping my vestibular system. The idea seems to be to initiate the system (my symptoms flare when doing it, but then go away afterwards) without over-taxing it. You should be able to find some online or from a physical therapist (just start slow). My symptoms have been different than what you described, but it might be worth looking into.
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Unread 01-05-2014, 10:05 AM   #10
LoriLu97
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Default Vestibular therapy

Quote:
Originally Posted by praisinginpain View Post
Have you tried vestibular exercises? My doctor has me doing them, and they've been slowly helping my vestibular system. The idea seems to be to initiate the system (my symptoms flare when doing it, but then go away afterwards) without over-taxing it. You should be able to find some online or from a physical therapist (just start slow). My symptoms have been different than what you described, but it might be worth looking into.
This therapy for me created much pain, confusion and usually a migraine. Making driving home a challenge. With my fog it was too much too fast. Consider readdressing your symptoms with your Dr. about these treatments and your reactions in detail. Remember you deserve proper treatment. With my new Dr. I received a correct diagnose and it was expressed that wasn't the best option for my needs. Each person is different so this may be perfect for you. My issues were my eyes and the vestibular system. My eyes don't converge. Due to the brain not being ready to take on too much I only do two different vestibular exercises per day. Best of luck to you. On this path there is always another gift as the brain learns a new trick or compromise. Remember your brain controls you and sends you sweet messages to slow down and rest. It is working hard to help you. If you don't listen it will put the brakes on. Patience is a virtue. You are not alone He is by your side the whole way. Always ask for help from family and friends pull them in and share your challenges, educate them on PCS/MTBI. I downplay the drama of the pain and suffering. Only my husband knows. Best wishes, Lori
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