Living with Post Concussion Syndrome - how do you cope?

JourneyToPerfection

JourneyToPerfection

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The short version: an accident 3 years ago this September left me with whiplash and a severe concussion. Post concussion syndrome was the diagnosis that followed, from both my neurologist and my clinical psych.

Anywho, nearly 3 years have passed and the symptoms are no better, if anything worse.

We're talking crippling fatigue (low ferritin is part of it too, and infusions are what I'm having for that), body aches, PEM (days are what it takes me to bounce back from washing the dogs or cleaning the house), brain fog x 1000000, tiredness so constant that on some days I can't get up before midday, and mild flu/cold type symptoms. The list goes on.

Debilitating doesn't cover it. This is how I've lived for years and no end appears to be in sight. Parenting and a full time job are things I still have to manage, but barely adequately is how it feels.

My GP and I are working through ongoing medication adjustments, further testing and what not, but if anyone else here has suffered PCS, or knows someone who has, what helped you? What took the edge off that chronic, never ending feeling?

The peptides I'm currently running for it are:

  • Glutathione
  • Thymosin Alpha 1
  • KPV
  • TB500

A few 'energy' peps like amino and NAD have been tried, and they did F all.
 
Hi hun.

Whoa, that is a lot to go through. Neither neuroscience nor nootropics are my forte, but Selank or Semax might do something for the brain fog? Whether you're on a GLP-1 I can't remember, but tirzepatide could help if chronic inflammation is behind the post concussion symptoms (it has also helped my focus when I take a break from my ADHD meds). Given how serious your condition is, a doc or pharmacist would also be worth talking to about peptide options if you can. Rules around peps are tighter in Australia, I know, but a VPN plus a text or video conference with a non-Aus doc more open to peptide therapy is maybe an option — a DO or homeopathic doc, say?

Biggest hugs to you! That is a LOT to be going through.

(Has acupuncture or Traditional Chinese Medicine been tried yet? Wonders are what I've found it can do, and plenty of patients in pain or suffering that western meds and physiotherapy couldn't help have been helped by it.)
 
JourneyToPerfection said:

The short version: an accident 3 years ago this September left me with whiplash and a severe concussion. Post concussion syndrome was the diagnosis that followed, from both my neurologist and my clinical psych.

Anywho, nearly 3 years have passed and the symptoms are no better, if anything worse.

We're talking crippling fatigue (low ferritin is part of it too, and infusions are what I'm having for that), body aches, PEM (days are what it takes me to bounce back from washing the dogs or cleaning the house), brain fog x 1000000, tiredness so constant that on some days I can't get up before midday, and mild flu/cold type symptoms. The list goes on.

Debilitating doesn't cover it. This is how I've lived for years and no end appears to be in sight. Parenting and a full time job are things I still have to manage, but barely adequately is how it feels.

My GP and I are working through ongoing medication adjustments, further testing and what not, but if anyone else here has suffered PCS, or knows someone who has, what helped you? What took the edge off that chronic, never ending feeling?

The peptides I'm currently running for it are:

  • Glutathione
  • Thymosin Alpha 1
  • KPV
  • TB500

A few 'energy' peps like amino and NAD have been tried, and they did F all.
Click to expand...
I'm sorry you're going through this. I've nothing useful to contribute I'm afraid, but I'll be watching the thread closely - a friend of mine is in much the same position, so I want to see what answers come back for you. Best of luck, and get well.
 
Hey there! Sorry to hear you're going through this. A lot of what you're describing rings really familiar to me, personally. A few questions I have. Did your whiplash come with a neck injury? Any wild swings of your HR? Was there any history of problems, in any way, before the kinetic force injury? Any chronic pain throughout your body?
 
That sounds incredibly hard, and I'm sorry it's happening to you. Post-concussive syndrome has been part of my life for years as well. The PEM hit me hard too — at most, I could manage 1 significant activity per week. Any slight exertion set off my neck and back, which were in pain all the time.

Reading anything with real density, literature included, was beyond me. Podcasts on heavy topics were equally impossible; pushing my brain that way brought on awful headaches.

Here's what made a difference for me; how much each thing contributed is hard to say, but I've starred the ones that stood out as especially useful:

  • An anti-inflammatory way of eating (cutting sugar mattered most; caffeine caused no problems and actually seemed to help) *
  • Soft shell hyperbaric oxygen dives **
  • Ozone therapy * (benefits came and went)
  • BPC/KPV/GHK Cu *
  • Counterstrain physical therapy; this osteopathic form of PT aims to bring blood flow back to injured areas, support the lymphatic system, and do more *** (likely the single most helpful thing I've tried; afterward I could pick up reading again, work through dense texts and hard subjects, and basic conversation stopped draining me so much)
  • Easy daily puzzles — word searches, Solitaire, that sort of thing
  • Hands-on crafts such as knitting and crochet; once I began these, my brain handled complex thinking with less difficulty.
  • Filling in gaps with supplements such as fish oil, magnesium, zinc, and B vitamins
  • Taking glycine and green tea every day

I really hope some of these treatments help you too. This condition is brutal, and it touches every area of life.
 
There are a few foundational areas you should examine. And for each one, we require solid measurements.

What does your diet look like? For a full 2 weeks, you'll have to endure the annoyance of weighing and logging every single thing, drinks included. I wound up buying a cronometer subscription to do this, though my plan is to keep tracking for close to a year. A 2 week stretch gives us a reasonably good picture of what you're eating.

Once you have that cronometer data, it has to be interpreted. I run mine through AI personally, but if a nutritionist is available to review it, do that as well.

What do all the labs show? McCoy's tricorder isn't something we have, but the fundamentals (iron 😉 for instance) along with B Vitamins, D Vitamins, and so on should all be tested. Lab and cost constraints mean not everything is testable, but whatever is affordable and produces dependable results ought to be checked.

Good mineral labs are difficult to obtain, so I determined my supplement requirements for minerals by reviewing my diet data and adding supplements for the ones where my intake was low.

Maybe consider getting one of those all in one full lab workups. Take a look at the ordering your own blood work thread. The effort pays off.

When low energy is an issue, I've found a metabolic doctor to be extremely helpful. I also find that my functional medical doctor doesn't brush me off or gate keep the way conventional PCPs frequently do. Truly, consider arranging a visit with these doctors. My PCP was worse than useless in treating this.

If all of this strikes you as a waste of time, it isn't. This basic process uncovered a ton of issues for me. It has improved my nutrition which over the period of months improved everything else.

Alas, doing things this old school way often means doing them the sloooow way, but I got there. You might also.
 
I turned to Epitalon, NA Semax, and P21 as part of my recovery process. This happened a few years after my most recent TBI as well. After going through multiple cycles of each, I believe it made a difference, and the brain fog I had been dealing with finally cleared up.
 
Could you share your full blood panel results? And what is your vitamin D level? Which medications are you on right now? Have you ever used TNF inhibitors such as Etanercept?
 
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