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


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Old 09-01-2014, 09:05 AM #1
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Default Botox..

Thoughts on this??? I am torn...
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The Start: MVA, t-boned, on 1-12-14 (my sons 5th birthday) and did not think anything of it.. my back hurt on site but everything else seemed ok. Lost about 10-12 hours from about 3 hours after the accident to the next day...Experienced terrible brain fog for over a month, plus intense headaches, nausea, dizziness, cognitive difficulties, disorientation, no short term memory, depression and just an overall hangover feeling daily.

Current Situation: I'm about 7 months in and my local neurologist has waived her white flag and therefore I am headed to Dallas to be seen (I have family there). The headaches are still daily. I have nausea, dizziness as well.

Drugs I have been on- Vicodin (off), Naproxen (off), proanolol (off), topamax (off), cataflam (off), Midrin (off), Flexeril (off) and now Namenda XR (off), Nortrptylin (off), Verapamil (off)

Therapy- Osteopath, Vestibular and balance therapy, fuzion/soft tissue massage, acupuncture

Drs- ER (no help), GP, Chiropractor, Neurologist and Osteopath
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Old 09-01-2014, 09:26 AM #2
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I know they talked about wanting to do that to me in the base of my skull. They claim it has helped some big time with headaches. We never really got out of that stage though, so I cant honestly say.
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Old 09-01-2014, 11:42 AM #3
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that is what the thought is for me Kev... and just nervous...
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The Start: MVA, t-boned, on 1-12-14 (my sons 5th birthday) and did not think anything of it.. my back hurt on site but everything else seemed ok. Lost about 10-12 hours from about 3 hours after the accident to the next day...Experienced terrible brain fog for over a month, plus intense headaches, nausea, dizziness, cognitive difficulties, disorientation, no short term memory, depression and just an overall hangover feeling daily.

Current Situation: I'm about 7 months in and my local neurologist has waived her white flag and therefore I am headed to Dallas to be seen (I have family there). The headaches are still daily. I have nausea, dizziness as well.

Drugs I have been on- Vicodin (off), Naproxen (off), proanolol (off), topamax (off), cataflam (off), Midrin (off), Flexeril (off) and now Namenda XR (off), Nortrptylin (off), Verapamil (off)

Therapy- Osteopath, Vestibular and balance therapy, fuzion/soft tissue massage, acupuncture

Drs- ER (no help), GP, Chiropractor, Neurologist and Osteopath
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Old 09-01-2014, 04:11 PM #4
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I was sent to the neurologist in May or June and he recommended Botox for my 2.5 year long headache.

He wouldn't guarantee any results, said it was a 50/50 gamble since my head pain is not typical of what is normally treated by Botox and that I would have to do 3 rounds before I could know for sure whether it would work or not work. Each round would end up costing me about $1000 after what our private insurance covers.

My physiatrist (rehab doc) really wants me to try it. My physiotherapist thinks its a waste of money.

The idea of Botox and the list of potential side effects freaks me out, especially given that every drug we've tried so far to treat my head pain has ended up with intolerable side effects, even weird ones that almost no ones gets.

I've heard quite a few people say they've been helped by Botox, but when they tell me what their symptoms were like before, they were more like regular headaches that came and went, not constant head pain like I experience.

So for now, I'm not doing Botox. I won't rule it out forever, but while this head pain is awful, I'm just not ready to do something that potentially could make it worse. Especially not for that kind of money. Not when I'm about to go for a vision therapy assessment and investigate that, anyhow. That will be plenty expensive enough.

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Old 09-01-2014, 04:18 PM #5
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What are the side effects?
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Old 09-01-2014, 07:39 PM #6
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My physiatrist was talking about this and said it works for some but not others plus it's very expensive. I asked him if he could put some around my eyes while he was at it

Do you have migraines?

Sitting here with a headache so wondering too what the side effects are for Botox?
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Old 09-01-2014, 07:51 PM #7
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I was having debilitating migraines and getting the Botox worked for me. I am due for my second round of treatment this week. They also injected some into my trapezius muscles (which were like a cord) and my scapular muscles. This also helped. I still have frontal headaches 24x7 but the Botox keeps me out of the "dark room" now.
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1 year post-concussion caused by a high-speed MVA.
Driver to driver head-on. I was stationary and the other vehicle hit me traveling > 110 km/hr successfully breaking my sternum.
Diagnosed with chronic neuropathic pain, PTSD, somatic symptom disorder, depression, anxiety. I suffer from daily headaches, 24x7.
Meds: On prescription medication for neuropathic pain, breakthrough pain, anxiety, depression and sleep disorder.
OTC medications used to try and keep headaches in check: acetaminophen and ibuprofen.
Treatments: Physio (declined since May '14), RMT (declined since Feb '14), Psychiatry CBT (since Nov '13), Pain Clinic Nerve Blocks, Botox and Lidocaine Infusion (since May '14), SLP (since Aug '14), OT (since Sep '14).
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Old 09-01-2014, 09:00 PM #8
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The common possible side effects are readily available online, but I would suggest discussing them with your neurologist or whomever would be performing the injections for you.

I discussed them with my neurologist and he's "the guy" in the city that everyone likes to send their migraine patients to for botox because he's very good at the injections and has done so many. There are other docs in the city that do them, but none as experienced and he was very upfront about the side effects posted online and some others.

I don't want to get into them here, knowing the high levels of anxiety that some people can experience when discussing things like this, which is why I'm suggesting to talk to your doctor about it and decide if its right for you.

Right now, for me, I've decided its not. Maybe at some point in the future. But given how overly sensitive I've been to everything they've given to me up until now, it gives me pause.

And technically, I would not describe my head pain as a migraine or even a headache. Its head pain, that I've had constantly without a break for 2.5 years. To me, that does not qualify as a migraine or a headache. But what do I know?

Also, no one can find any neck injury or muscle issues. We tried cortisone and lidocaine injections with no improvement at all.

Best of luck.
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Old 09-03-2014, 12:48 PM #9
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They called today and want to get into a consult before doing them.

Not sure how I feel about them, something I seriously need to think about. I dont want to google the side effects, so maybe you can pm me?

Anywho, most of the time mine are mingraines. I guess their current thought process is im suffering from "migralepsy" and this could potentially help out both the migraines and the "seizures." Its funny how they dont listen to me about the seizures, but now all of a sudden they think im suffering from this. Also comical is how they said my MRI was clear, but this new neurologist claims the MRI proves this would help. When I questioned them on the phone, they wouldnt answer me and said we would talk at the consult if WC accepts it. Ugh, what does that even mean?!

I swear, some of these neurologists must have brain damage far worse than any of us for their thought processes to switch so quickly on a dime.
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Old 09-03-2014, 03:48 PM #10
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Quote:
Originally Posted by kevbo887 View Post
They called today and want to get into a consult before doing them.

Not sure how I feel about them, something I seriously need to think about. I dont want to google the side effects, so maybe you can pm me?

Anywho, most of the time mine are mingraines. I guess their current thought process is im suffering from "migralepsy" and this could potentially help out both the migraines and the "seizures." Its funny how they dont listen to me about the seizures, but now all of a sudden they think im suffering from this. Also comical is how they said my MRI was clear, but this new neurologist claims the MRI proves this would help. When I questioned them on the phone, they wouldnt answer me and said we would talk at the consult if WC accepts it. Ugh, what does that even mean?!

I swear, some of these neurologists must have brain damage far worse than any of us for their thought processes to switch so quickly on a dime.

WOW! I have not looked up the side effects... I will now... I am supposed to go friday... this dr is a neurologist and a ocular neuro... she does a lot of work with empty sella... which i have... I am still up in the air about this as well... I will PM you side effects...
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The Start: MVA, t-boned, on 1-12-14 (my sons 5th birthday) and did not think anything of it.. my back hurt on site but everything else seemed ok. Lost about 10-12 hours from about 3 hours after the accident to the next day...Experienced terrible brain fog for over a month, plus intense headaches, nausea, dizziness, cognitive difficulties, disorientation, no short term memory, depression and just an overall hangover feeling daily.

Current Situation: I'm about 7 months in and my local neurologist has waived her white flag and therefore I am headed to Dallas to be seen (I have family there). The headaches are still daily. I have nausea, dizziness as well.

Drugs I have been on- Vicodin (off), Naproxen (off), proanolol (off), topamax (off), cataflam (off), Midrin (off), Flexeril (off) and now Namenda XR (off), Nortrptylin (off), Verapamil (off)

Therapy- Osteopath, Vestibular and balance therapy, fuzion/soft tissue massage, acupuncture

Drs- ER (no help), GP, Chiropractor, Neurologist and Osteopath
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