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


advertisement
Reply
 
Thread Tools Display Modes
Old 10-27-2020, 09:51 PM #1
Crabmeat Crabmeat is offline
New Member
 
Join Date: Apr 2020
Posts: 5
3 yr Member
Crabmeat Crabmeat is offline
New Member
 
Join Date: Apr 2020
Posts: 5
3 yr Member
Default Ketamine, MeRT, nerve decompression surgery?

Hello,

I'm at 13 months post concussion, and still desperately looking for something to stop the headache. Headache is my only real symptom, along with the subsequent anxiety and depression. I've been to dozens of doctors and tried all the medications and injections to no avail.

Recently I've been told it might be occipital neuralgia, but occipital nerve blocks provide no relief so that seems doubtful.

Anyway, after some further research I'm now looking for feedback on:
ketamine therapy
magnetic EEG resonance therapy (MeRT)
occipital nerve decompression surgery

Anyone experienced these or other similar treatments/surgeries?
Crabmeat is offline   Reply With QuoteReply With Quote

advertisement
Old 11-01-2020, 12:04 AM #2
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,416
15 yr Member
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,416
15 yr Member
Default

Have you found anybody who understands Botox for conditions like yours?

It has success in many cases.
__________________
Mark in Idaho

"Be still and know that I am God" Psalm 46:10
Mark in Idaho is offline   Reply With QuoteReply With Quote
Old 11-01-2020, 12:07 PM #3
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Default

What about less invasive, less meds treatment first ?
Have you tried PT or DC, massage?
Soft tissue, strains, muscle spasms, trigger points, misalignment factors can be addressed by good PT or Chiropractic if you haven't explored that route yet..
Maybe even acupuncture..
These things can cause headaches..
__________________
Search NT -
.
Jomar is offline   Reply With QuoteReply With Quote
Old 11-01-2020, 04:06 PM #4
BurritoWarrier BurritoWarrier is offline
Junior Member
 
Join Date: Sep 2019
Posts: 45
3 yr Member
BurritoWarrier BurritoWarrier is offline
Junior Member
 
Join Date: Sep 2019
Posts: 45
3 yr Member
Default

Can you list the medications and injections you've tried? (Along with the doses and length of time you were on them for). I know you said all of them, but the list is long, and it can take a while to work up to the max dose on each one, so I'm just curious if there's anything left to try.
BurritoWarrier is offline   Reply With QuoteReply With Quote
Old 11-04-2020, 02:25 AM #5
Crabmeat Crabmeat is offline
New Member
 
Join Date: Apr 2020
Posts: 5
3 yr Member
Crabmeat Crabmeat is offline
New Member
 
Join Date: Apr 2020
Posts: 5
3 yr Member
Default

Thanks all for the responses. I have tried Botox, PT, vestibular, acupuncture. Most of the meds I've tried have had bad side effects. Here's a list:

• Migranol (B2, feverfew), Migra-eeze (B2, butterbur)
• CBD tincture and smoking
• Imitrex, 100mg
• Nortriptyline, 10mg, 5 days (horrible side effects)
• Topamax, 25mg
• Cyclobenzaprine
• Occipital Nerve Block
• Botox, x2
• Cymbalta, 30mg, 7 weeks; then again for 6 weeks
• Synapsin nasal spray
• Epidural
• Lyrica, 50mg, 5 days (bad side effects)
• Aimovig
• Ajovy
• Medrol 4mg pack, 12 days
• Kratom
• Occipital Nerve Block with cortisone

Doctors I've seen include:
o 3 Neurologists
o Physical Therapist
o Acupuncturist
o Therapist
o Pain Management
o Sports Medicine
o Vestibular PT
o Psychiatrist

I am scheduled to try ketamine infusion next week.

Are there others who have gotten a diagnosis of occipital neuralgia? After reading more about it, seems what I have could be classified more as OM than PCS, since the headache is the only symptom. But then again, the occipital nerve block didn't do anything...
Crabmeat is offline   Reply With QuoteReply With Quote
Old 11-04-2020, 09:19 AM #6
BurritoWarrier BurritoWarrier is offline
Junior Member
 
Join Date: Sep 2019
Posts: 45
3 yr Member
BurritoWarrier BurritoWarrier is offline
Junior Member
 
Join Date: Sep 2019
Posts: 45
3 yr Member
Default

Okay, this is what I had been wondering given that you had been suffering with headache for only 13 months and "tried everything". It does look like you've tried a lot of things, but I don't see that you've given any of the standard preventatives a fair trial (working up to the max dose and staying there for 6-8 weeks).

I had severe nerve pain in my face, and it almost entirely resolved with Topomax. It is different for everyone, but I can tell you 25mg did nothing for me, and I didn't have it resolved until I was on 100mg (therapeutic dose is considered 100mg-200mg) for several weeks. That follows what leading doctors have suggested.

For what it's worth, I was first on 75mg of Nortriptyline (therapeutic dose is 50mg-100mg) for about 8 weeks and found the side effects to be horrendous. I wanted to push through, though, because some people have initial side effects that subside and they find relief. Didn't happen for me

"Fair" preventative drug trials are really tedious and take a lot of time. People get impatient because of the side effects and the level of pain they are in--they want relief right away. I get it. And even with a fair trail, each drug is only 50-75÷ effective at reducing symptoms by 50÷ or more, so that's not really great odds.

Read the medication section of "Heal Your Headache" (ignore the hokey title--its written by one of the most famous headache doctors to come out of John's Hopkins and is still somewhat used as the treatment standard today). There is some good guidance on preventatives in there, but it looks like you technically have all of the main ones left to try (besides the newer injectables), given the ultra low doses of topomax and nortriptyline you were on.




Quote:
Originally Posted by Crabmeat View Post
Thanks all for the responses. I have tried Botox, PT, vestibular, acupuncture. Most of the meds I've tried have had bad side effects. Here's a list:

• Migranol (B2, feverfew), Migra-eeze (B2, butterbur)
• CBD tincture and smoking
• Imitrex, 100mg
• Nortriptyline, 10mg, 5 days (horrible side effects)
• Topamax, 25mg
• Cyclobenzaprine
• Occipital Nerve Block
• Botox, x2
• Cymbalta, 30mg, 7 weeks; then again for 6 weeks
• Synapsin nasal spray
• Epidural
• Lyrica, 50mg, 5 days (bad side effects)
• Aimovig
• Ajovy
• Medrol 4mg pack, 12 days
• Kratom
• Occipital Nerve Block with cortisone

Doctors I've seen include:
o 3 Neurologists
o Physical Therapist
o Acupuncturist
o Therapist
o Pain Management
o Sports Medicine
o Vestibular PT
o Psychiatrist

I am scheduled to try ketamine infusion next week.

Are there others who have gotten a diagnosis of occipital neuralgia? After reading more about it, seems what I have could be classified more as OM than PCS, since the headache is the only symptom. But then again, the occipital nerve block didn't do anything...
BurritoWarrier is offline   Reply With QuoteReply With Quote
Old 11-04-2020, 01:25 PM #7
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,416
15 yr Member
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,416
15 yr Member
Default

I see you have not been assessed by an Upper Cervical chiropractor. A NUCCA or Atlas Orthogonal trained chiropractor would be worth a try. They specialist in C-1 and C-2 issues.
__________________
Mark in Idaho

"Be still and know that I am God" Psalm 46:10
Mark in Idaho is offline   Reply With QuoteReply With Quote
Old 11-04-2020, 02:00 PM #8
caroline2 caroline2 is offline
N/A
 
Join Date: May 2015
Location: Santa Monica, CA
Posts: 3,313
8 yr Member
caroline2 caroline2 is offline
N/A
 
Join Date: May 2015
Location: Santa Monica, CA
Posts: 3,313
8 yr Member
Default

OP, I've never had a concussion and have NOT had a headaches in over 25 yrs, and I believe all due to taking Grape Seed Extract....now if this would/could help you, don't know until one tries..... You sure have taken a LOT of pharma drugs and still have issues....So why not think about this.

Here this D.C. Dr. Silverman talks about all the natural remedies and he does mention Resveratrol which is of the Grape family.

Manage a Concussion with Supplements & Vitamins | Fullscript
caroline2 is offline   Reply With QuoteReply With Quote
Old 11-05-2020, 02:40 PM #9
Crabmeat Crabmeat is offline
New Member
 
Join Date: Apr 2020
Posts: 5
3 yr Member
Crabmeat Crabmeat is offline
New Member
 
Join Date: Apr 2020
Posts: 5
3 yr Member
Default

Thanks, appreciate the input. A chiropractor is something that I have not yet tried but have always been considering, probably will wait until next calendar year when I can switch to PPO insurance.

I can look back into topamax and will check out that book. Admittedly I only tried that medicine for a few days and stopped more because I wanted to try a 'holistic' route, more than because of negative side effects.

But yea - the nortripyline was the first med I tried and it was absolutely miserable. Before it I was going to work, exercising - but as soon as I started it I ended up having to take months off, it felt like that's when the PCS actually started.

My bad experience with meds is why I am intrigued by ketamine. Who knows, it may be BS, but apparently some people do get depression/pain results right away and not have to wait 8 weeks.

My vitamin regimen has included fish oil, magnesium, b2, and D, but I'll throw grape seed extract into the mix.
Crabmeat is offline   Reply With QuoteReply With Quote
Old 11-05-2020, 03:25 PM #10
BurritoWarrier BurritoWarrier is offline
Junior Member
 
Join Date: Sep 2019
Posts: 45
3 yr Member
BurritoWarrier BurritoWarrier is offline
Junior Member
 
Join Date: Sep 2019
Posts: 45
3 yr Member
Default

I don't blame you for not wanting to deal with medication side effects. I went through the ringer with it, too. Difficult to handle, especially if you have a job that is at all intellectually challenging. I did find that increasing the dose super slowly made a world of difference, though. So if you ever want to give the preventatives a try again, know that's an option.

My first headache doc had me going up on Nortriptyline at 25mg increments (I'm a pretty lean female), and I thought I was dying. My second doctor prescribed me a liquid version, which you can create infinitely small doses out of, and I went up 5mg at a time...WAY better. Still didn't end up helping in the end, but I was able to give the med a fair trial without feeling like I was going to die of side effects.

Topomax comes in 15mg sprinkle capsules, so you can increase by 15mg increments if you like, which I found mostly tolerable, and the side effects mostly subsided after about a month of not changing the dose anymore. Different for everyone, but generally going slower helps for sure!
BurritoWarrier is offline   Reply With QuoteReply With Quote
Reply

Tags
headache, ketamine, nerve, occipital, therapy

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Nerve Decompression Surgery reddhairedgirl01 Peripheral Neuropathy 1 10-07-2018 06:21 AM
Musician just having Ulnar Nerve Decompression Surgery Art Burke New Member Introductions 4 11-08-2015 02:48 PM
Ulnar nerve transposition surgery after unsuccessful TOS decompression surgery? tos1234 Thoracic Outlet Syndrome 6 02-23-2015 09:54 PM
Dr. Ducic - nerve decompression surgery concussedlawyer Traumatic Brain Injury and Post Concussion Syndrome 8 05-22-2014 09:15 AM
Triple nerve decompression surgery MelodyL Peripheral Neuropathy 15 10-07-2009 04:16 PM


All times are GMT -5. The time now is 07:52 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.