August 10, 2023 • 21 mins
PLEASE READ!
Please note that The Post Concussion Podcast has been closed for new episodes as of early 2024. Concussion Connect is also closed.
Thank you to everyone who was so supportive over the years and I hope these episodes continue to help others as they come across them!
I have set on a new venture (with a pen name - Izzy Barry) you can learn more about here
https://izzybarry.substack.com/
--
Last weeks episode #111 on "When Concussion Turns Chronic" raised a lot of questions. During this episode I take the time to answer some of those lingering questions to hopefully bring you some clarity.
Will step into the complex world of chronic illnesses associated with post-concussion syndrome such as autoimmune conditions, central sensitization disorders, and POTS. I’ll be sharing my battle tactics against these conditions and how they differentiate from PCS. We’ll explore the vital role of support and resources in dealing with PCS. Plus, share concussion and post-concussion awareness apparel that can help in raising awareness about this critical issue!
FAQs https://postconcussioninc.com/faqs
Concussion Awareness Clothing: https://www.bonfire.com/store/concussion/
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Bella Paige (00:03):
Hi everyone.
I'm your host, Bella Paige, andafter suffering from post
concussion syndrome for years,it was time to do something
about it.
So welcome to the postconcussion podcast, where we dig
deep into life when it doesn'tgo back to normal.
Be sure to share the podcastand join our support network,
Concussion Connect.
Let's make this invisibleinjury become visible.
(00:25):
The Post Concussion Podcast isstrictly an information podcast
about concussions and postconcussion syndrome.
It does not provide norsubstitute for professional
medical advice, diagnosis ortreatment.
Always seek the advice of yourphysician or another qualified
(00:46):
health provider with anyquestions you may have regarding
a medical condition.
Never disregard professionalmedical advice or delay in
seeking it because of somethingyou have heard on this podcast.
The opinions expressed in thispodcast are simply intended to
spark discussion aboutconcussions and post concussion
syndrome.
(01:06):
Do you feel constantlyoverwhelmed by your concussion
symptoms and life changes?
This is where Wombat.
Wombat can help you A newbreathwork and somatic therapy
app powered by neuroscience.
Let's slow down those racingthoughts and give ourselves the
ability to breathe.
Wombat is designed with anunderstanding of the impact of
(01:27):
trauma on individuals, ensuringa safe and supportive
environment for users dealingwith stress, anxiety or post
traumatic experiences.
Go to their website today athellowombatcom.
Welcome to episode number 112 ofthe Post Concussion Podcast
with myself, Bella Paige.
(01:48):
Now, this is a unique episodeas this is kind of part two of
when Concussion Turns Chronic.
I don't usually do these typesof podcast episodes because I
don't do Q&As on the podcast,because I do those on Concussion
Connect and I don't have enoughtime to do both.
This is more like yourquestions answered.
(02:10):
I thought I did have anotherepisode planned for today, so
that's why this episode is alittle delayed, because I
decided to plug this in herelast minute.
It's more like your questionsanswered type episode and that's
because I've been said probably200 plus questions from our
latest podcast episode and Iknew it would raise a lot of
(02:31):
questions and that's okay.
I can't answer them all rightnow but I will answer a few and
I'll continue with ConcussionConnect Help Series on a lot of
this to really clarify kind ofwhat's going on and things like
that.
I will answer a few here justto kind of make sure everybody
kind of gets a betterunderstanding.
Now the biggest question I gotwas are you recovered from PCS,
(02:55):
which I did talk about a littlebit in the last episode?
And the answer is yes, and Ican tell you why, and that is
because I don't have all thesymptoms that PCS had, or my
experience with PCS had, aspersistent concussion symptoms,
post concussion syndrome,whatever you want to call it.
Everyone's experience is verydifferent and we all know that.
(03:17):
So for me it was.
Memory loss was a really bigthing.
I could read a page and nottell you what was on it.
I was missing a few years.
I have big gaps in my memoryfrom when I was younger and
going through this as well, Icould walk into a store and not
know where I was.
I had light sensitivity,overhead lights.
I'm still not the biggest fanof overhead lights, but that's
(03:39):
actually from another illnessnow, but I will talk about that
in a little bit.
But I don't have lightsensitivity like I used to.
I don't have noise sensitivityat all anymore.
I don't have headaches like Ihad before.
Don't get me wrong.
I still get headaches, but Ialways know what they're from.
They're not related to anythingthat my PCS headaches were from
(04:03):
.
I had a lot of vision problems,like reading I couldn't read.
Now I can read, actually shared.
I think the other day that Iread an entire book in a day.
Well, I read another book inlike 12 hours the next day
because it was a series and itwas really good.
So that's not something I couldhave done in the past with PCS
(04:24):
at all because reading wasnearly impossible.
So you know when you go downthe symptom list of PCS and what
is PCS?
And if you want a list of thesetypes of things like what is
post concussion syndrome, whatis CTE, how is post concussion
syndrome diagnosed, what is asub concussive head injury, how
to live with PCS, types oftreatments, what are symptoms
(04:48):
all these types of questionsthat you might have or somebody
else might have for you.
We actually have an FAQFrequently asked questions on
post concussion Inccom that youcan go to.
I will link it in the episodedescription.
That kind of just answers allthese.
They're not super in-depthanswers, of course, but they
definitely give you a basicunderstanding or where to go
(05:09):
next to get you know more help,different types of Specialists
you can see in your recoveryjourney.
Sometimes concussion specialistis a little too general.
So definitely something thatyou can take a look at and maybe
it'll help you out now.
Another comment that I gotduring all of this was it's
really bad, it's rude, it's.
(05:31):
I can't believe you For tellingpeople they won't get better.
This is really disheartening.
I don't think you're helpinganyone and you know I'm just
gonna throw this out there thatI do all of this in my own time.
There is sponsors on thepodcast but, believe me, this
costs a lot more than you couldimagine and beyond what sponsors
(05:54):
help us with.
So this is all actually out ofmy own pocket.
So when people kind of get likedefensive and Kind of harsh
towards me, I do take it alittle personally, just because
all of this is just help people.
That's why it's here, that'swhy we accept donations.
All that, because all of thisis Is just hard work, and I do
(06:18):
it to help people and for noother reason.
And so Talking about chronicillness after a concussion is
not telling you that you won'tget better.
I'm hoping you all do.
I just know that there is thefew that do experience this like
I did.
I do know there's others thatyou know they're symptoms one
away, but they're still ill andMaybe they're questioning it or
(06:41):
maybe new symptoms that arearising, but they don't relate
to that concussion symptoms list.
So they can't figure out what'sgoing on and they just, you
know, throw it in thatconcussion bucket, like I talked
about in the last episode.
So it's important to talk about, because you may not relate you
likely will get better, becauseit's unlikely that you do
(07:01):
become this At the moment withbasic, current research but it's
important for those few, evenif it's two out of a few
thousand people, that this helps.
That's what matters.
It's really about the smallportion of people and just to
create awareness, because we'rehere for everyone.
(07:22):
I'm here for everyone, frompeople who have PCS for a month,
for parents who are dealingwith their Children having PCS,
the opposite, everything.
I'm here for our families,caregivers, support workers,
specialists.
We're here to create awareness.
We're here to help.
(07:42):
Well, I say we all the timeI've been really working on that
.
It's just me I had a post aboutthis the other day that I do
all of this.
There is no other team behindme.
So, yeah, but I do believe thatit can help a lot of people.
So the last episode, if it madeyou feel worried, try not to.
(08:02):
Of course, it's really hardwhen you feel like you're never
going to get better, but itdoesn't mean things won't get
better.
It's just, you know, sometimesthe roller coaster recovery is
up and down and right and left,and sometimes you hit roadblocks
, but it doesn't mean that youwon't get around them.
And so another thing that I gotasked about a lot, which kind
(08:23):
of relates to that, is how do Iknow what stage I'm at?
Well, if you're really new toPCS and I don't want to make it
seem like it's not a long time,and remember I am not a medical
professional.
I read articles but no MD here.
But I'd say if you're stillunder a year or two years, I'd
(08:46):
say you have so much potentialto improve your symptoms, you
have so much potential toimprove your symptoms at five
years.
I've improved all of mine.
Between year two and five therewas a really big jump in
symptoms and five and seven andthen after that almost all of
them were gone and then therewas just a few things to sort
out, like a few things withreading and things like that.
(09:08):
So you know, sometimes thosebig jumps happen later on.
But if you're around, then justreally focus on your recovery.
And you know, if your symptomsare all on that post-concussion
symptom list, then that's mostlikely from basic understanding
of how this stuff works, thenyou still have PCS and that's
(09:30):
okay because you can recoverfrom PCS.
And I had this conversation theother day on concussion connect
about why do I call it PCS andnot a brain injury, and there is
no problem with what terms youuse.
I have a help series on this.
To me, a brain injury is whathappened.
I had a brain injury.
(09:51):
I had a concussion, wherepersistent concussion symptoms
or post-concussion syndrome issomething I have.
It's more like the illness.
It's more like you have a tumorbut you have cancer.
I definitely have otheranalysis and they're better in
the help series.
I swear because I was focusingon that.
But I call it PCS instead of abrain injury because I had a
(10:14):
brain injury.
I don't still have.
It's not that my brain isn'tstill injured, but I'm working
on recovery and I like usingterms that you can recover from,
like you can recover from postconcussion syndrome and things
like that.
So kind of using that canreally help people, but it's
really up to you.
And how can I recover from PCSand how do I know what stage I'm
(10:34):
at?
So I'm gonna go back to thatfor a few seconds.
You know, really pay attentionto your symptoms.
Are they strange?
Are they beyond what postconcussion symptoms should be?
Are they weird?
Are things changing?
Can you not figure out whycertain things are happening?
And don't forget, bring it upwith your medical professionals
(10:55):
that maybe you're concerned it'ssomething else, and so a lot of
my symptoms didn't show upuntil PCS kind of stopped, and
maybe that's because I wasfinally able to be aware of them
, or maybe that's just how itworked.
And so how can I recover fromPCS is something I got a lot of
questions about, because sayingyou're recovered makes a lot of
people get hope, which is great.
(11:16):
Cognitive FX is aresearch-driven clinic that has
successfully treated thousandsof patients who have
long-lasting symptoms fromconcussions or other
brain-related injuries.
Cognitive FX has an innovativeapproach to recovery that uses
an advanced fMRI scan to map thefunction in your brain.
Treatment at Cognitive FX takesfive days to complete and uses
(11:38):
your fMRI scan as a guide andbaseline to ensure that your
treatment is personalized andeffective.
This means that you won't needto schedule and keep track of
multiple specialists, locations,dates, times or therapies,
because it will all be preparedfor you when you arrive.
Once you've completed theirtreatment, you receive a
personalized at-home plan tocontinue your recovery and gain
(11:59):
access to their online patientportal that has instructional
videos and resources for yourcontinued recovery Conveniently.
Cognitive FX also offers freeconsultations, so both you and
the doctors can ensure thattreatment is a good choice for
you and your injury.
Visit their website atCognitiveFXUSAcom.
Don't delay your recovery anylonger.
(12:20):
Find solutions at Cognitive FXtoday.
Welcome back.
So how can I recover from PCS?
I have an entire list on thatFAQ on post-accountation ink, of
how to recover from PCS.
And it's not how to recover,it's more like who you can go to
, because we have a lot oftreatments, a lot of specialists
that are available to you toget help, and so sometimes you
(12:45):
might not have thought of goingto a specific specialist.
So I really recommend checkingthat list out.
I also really recommend stayingpositive, and I mean staying
positive in the way that, okay,the eye therapy you did didn't
work.
Osteopath didn't help.
The massage makes things worse.
This doesn't help.
(13:06):
Eye therapy doesn't help.
Vestibular therapy doesn't help.
Physical therapy doesn't help.
You have to remember that allthese things take a really long
time to help, which is reallyfrustrating because they're
exhausting, but you also have toremember that science is
continuously changing.
For example, when I started allthis they said lay in a back
room, stay in that dark room,don't leave it.
(13:27):
Keep your sunglasses on, don'tbe exposed to light, muffle, all
sounds, kind of secludeyourself from the world.
And now we know that that is ahorrible recommendation because
it makes it really hard to getout of that dark room.
Pencil pushups have become veryadvanced with technologies and
the advancement of research andwe have treadmill tests and
(13:51):
heart rate tests to get backinto exercise and all these
things available to you now thatwe didn't have before.
So you just have to rememberthat this is only a short period
of time of 10 years, which ofcourse is a long time when
you're ill.
So next year, when I go to thenext medical conference I go to
on brain injuries andconcussions, who knows what they
can come up with?
(14:12):
So it's really important tokind of keep your hopes up that
maybe it's just the next thingthat's really going to make a
big difference in your world.
Now another question I got askedwas what chronic illnesses do I
have and how do they affect me?
Now I have a couple.
Some are you'd kind of expectafter the concussion and some
(14:32):
are not so expected.
So one is an autoimmunecondition which is called
Sjogrens, and so autoimmuneconditions.
There's overwhelming amount ofautoimmune conditions out there.
So autoimmune conditions, thecause of them is very unknown,
sometimes trauma, sometimes headinjuries, things like that can
(14:52):
be a cause.
So those were my causes, ortheir estimated cause, because
of course we can't guarantee alot of these things so that one
is like dry mouth, dry eyes, sothat one does give me headaches.
It really dry sometimes in mymouth.
It's really annoying,especially during the podcast.
I do have a lung issue withthat as well.
So they're working at the MayoClinic, as I was just there.
(15:15):
I have a lot of specialistshelping me, and so that's one.
And dry eyes is actuallysomething a lot of survivors
deal with.
So I really recommend thosepreservative free eye drops that
come in the little vials.
There's an eye mask you canfind on Community Recommends, on
Congestion Connect.
That I find really, reallyhelps If you find you get a lot
of eye pain.
You know you can use it atnight.
(15:37):
It only takes a few minutes andit creates so much relief and
it's really not overly expensive.
I think it's like $20 to $30.
So you know, affordable buthelpful.
Now I have something calledcentral sensitization disorder,
which kind of goes along thelines of fibromyalgia, chronic
fatigue syndrome and there's alot more in there and it's
(15:57):
probably the one that's the mostrelated to PCS, because it's
very rollercoastery, like mybody lives in bite or flight
kind of permanently.
That one causes really weirdsymptoms and I manage that a lot
with lifestyle things andthat's the one that I'm working
on the course for for CongestionConnect, because it's very
(16:19):
related and managing yourlifestyle with illness can be
huge, like sleep and relaxationtechniques and hygiene and
eating and exercise andfriendships and relationships
and all these things.
You know you put the wholepuzzle together and it can
really help you.
So that's really related tothat one.
The chronic fatigue issomething that I find comes in
(16:42):
way and I'm pretty good atfighting with it.
But there is the odd day whereI'm just the fatigue takes over.
For example, I'll sit in mydesk room sitting right now and
I'll like fall asleep sitting upand I'll just kind of accept
that I need to sleep for a day.
But you know, other than that,that one's not horrible.
I don't believe any of them arehorrible.
(17:02):
I have another one, pots.
As a lot of you know we have anentire POTS course on
Congestion Connect that is freewith Congestion Connect and that
one is kind of like.
A lot of people deal with somePOTS symptoms or related POTS
symptoms during concussionrecovery.
But POTS is usually a lot moresevere.
Like my vision used to justdisappear when I stood up too
(17:24):
fast.
I used to look drunk walkingdown a hallway.
So those are a few of them.
It kind of keeps going a littlebit.
But is it worse or is it better?
The PCS was one specificquestion that kind of made me
think a little bit and I wouldsay it's better, and not in a
way that it's better becausethere's no recovery for these.
(17:46):
I've read about recoveries forsome of them.
My doctors told me there is norecovery for me, at least at
this time.
They said it's not random, weknow why it's happening.
It's not going to go away, butit can get better and get worse
at certain times in your life,but it's not going away and so
the chronic aspect is definitelyharder to accept and get
(18:10):
through.
But once I got through that I'dsay it's definitely better,
mostly because it doesn't affectme every day, all day, in the
same way that PCS did.
It doesn't throw me to the wallso often because my POTS isn't
very severe.
Do a flare-ups, like I went fora hot bath and I ended up in bed
(18:31):
for like two days, I couldn'teven get up, I almost couldn't
land on one, and so I do havesome flare-ups of those things.
It's just habits.
Everything to do with mychronic illnesses are daily
habits that I can control, andnow that they've become habits I
don't have to think so muchabout them.
So it's not as crippling as PCS, at least in my mind, because
(18:54):
the pain in pulse congestionsyndrome was really awful and
what I do that doesn't have aton of pain other than my eyes
and my lungs.
Okay, there's pain, but it'sdifferent.
I find headaches are the worsttype of pain because headaches
don't allow you to think, walk,talk.
You know it's really difficultto kind of participate in
society.
A lot of my symptoms don'tprevent me from going out, like
(19:16):
noise sensitivity, lightsensitivity, things that prevent
you from interacting withothers I don't deal with.
So I definitely say it's better.
It's different though.
Pcs has hope at the end of atunnel where chronic illness the
hope is just to keep going orto manage it better.
But it's not that it'll end.
So it's definitely a differentperspective.
You know I'm affected every day, but some days less, sometimes
(19:40):
more, and it's very similar toPCS.
You know I find it's a littleless life-altering than PCS felt
.
Now there's so many requestsand questions and I did answer
some and if I didn't answer youI'm very sorry.
I am working through them.
Our latest podcast episode on myconcussions during chronic was
(20:00):
a hard episode.
It was a hard episode for me toshare.
I've been thinking aboutsharing this for months, like
probably six months I think andit was a hard door to open
because of all the questions,all the requests, all the you
know backlash for saying peoplewon't get better.
And I didn't say that.
I just said that some turn outwith chronic conditions instead
(20:22):
of just PCS, or PCS goes awayand then the chronic health
conditions are there.
Remember to check out the FAQ.
We do have concussion awarenesswell-being that I love.
It says concussions suck.
On one of the shirts we havepodcasts sweaters and t-shirts.
If you want to kind of you know, support this show.
(20:42):
There's one that says there'snothing mild but a concussion
and things like that.
So definitely check that outbecause I really love it.
I actually live in my fewt-shirts that are from that line
because they're my favorite towear around.
Make sure you check those out.
I know I talk about ConcussionConnect a lot, but I think
that's because it's where Ispend most of my time.
Do make sure you check that outas well, and I hope this helps
(21:03):
you.
And, believe me, if you haveany questions, don't hesitate to
ask.
I have no problem answeringeveryone's questions.
It just sometimes takes me alittle bit to get back to
everyone, and I hope you allhave a good day, or at least a
little less symptoms.
If you can Need more than justthis podcast, be sure to check
out our website,postconcussioninccom, to see how
(21:26):
we can help you in your postconcussion life, from a support
network to one-on-one coaching.
I believe life can get betterbecause I've lived through it.
Make sure you take it one dayat a time.
Hi everyone.
I'm your host, Bella Paige, andafter suffering from post
concussion syndrome for years,it was time to do something
about it.
So welcome to the postconcussion podcast, where we dig
deep into life when it doesn'tgo back to normal.
Be sure to share the podcastand join our support network,
Concussion Connect.
Let's make this invisibleinjury become visible.
(00:25):
The Post Concussion Podcast isstrictly an information podcast
about concussions and postconcussion syndrome.
It does not provide norsubstitute for professional
medical advice, diagnosis ortreatment.
Always seek the advice of yourphysician or another qualified
(00:46):
health provider with anyquestions you may have regarding
a medical condition.
Never disregard professionalmedical advice or delay in
seeking it because of somethingyou have heard on this podcast.
The opinions expressed in thispodcast are simply intended to
spark discussion aboutconcussions and post concussion
syndrome.
(01:06):
Do you feel constantlyoverwhelmed by your concussion
symptoms and life changes?
This is where Wombat.
Wombat can help you A newbreathwork and somatic therapy
app powered by neuroscience.
Let's slow down those racingthoughts and give ourselves the
ability to breathe.
Wombat is designed with anunderstanding of the impact of
(01:27):
trauma on individuals, ensuringa safe and supportive
environment for users dealingwith stress, anxiety or post
traumatic experiences.
Go to their website today athellowombatcom.
Welcome to episode number 112 ofthe Post Concussion Podcast
with myself, Bella Paige.
(01:48):
Now, this is a unique episodeas this is kind of part two of
when Concussion Turns Chronic.
I don't usually do these typesof podcast episodes because I
don't do Q&As on the podcast,because I do those on Concussion
Connect and I don't have enoughtime to do both.
This is more like yourquestions answered.
(02:10):
I thought I did have anotherepisode planned for today, so
that's why this episode is alittle delayed, because I
decided to plug this in herelast minute.
It's more like your questionsanswered type episode and that's
because I've been said probably200 plus questions from our
latest podcast episode and Iknew it would raise a lot of
(02:31):
questions and that's okay.
I can't answer them all rightnow but I will answer a few and
I'll continue with ConcussionConnect Help Series on a lot of
this to really clarify kind ofwhat's going on and things like
that.
I will answer a few here justto kind of make sure everybody
kind of gets a betterunderstanding.
Now the biggest question I gotwas are you recovered from PCS,
(02:55):
which I did talk about a littlebit in the last episode?
And the answer is yes, and Ican tell you why, and that is
because I don't have all thesymptoms that PCS had, or my
experience with PCS had, aspersistent concussion symptoms,
post concussion syndrome,whatever you want to call it.
Everyone's experience is verydifferent and we all know that.
(03:17):
So for me it was.
Memory loss was a really bigthing.
I could read a page and nottell you what was on it.
I was missing a few years.
I have big gaps in my memoryfrom when I was younger and
going through this as well, Icould walk into a store and not
know where I was.
I had light sensitivity,overhead lights.
I'm still not the biggest fanof overhead lights, but that's
(03:39):
actually from another illnessnow, but I will talk about that
in a little bit.
But I don't have lightsensitivity like I used to.
I don't have noise sensitivityat all anymore.
I don't have headaches like Ihad before.
Don't get me wrong.
I still get headaches, but Ialways know what they're from.
They're not related to anythingthat my PCS headaches were from
(04:03):
.
I had a lot of vision problems,like reading I couldn't read.
Now I can read, actually shared.
I think the other day that Iread an entire book in a day.
Well, I read another book inlike 12 hours the next day
because it was a series and itwas really good.
So that's not something I couldhave done in the past with PCS
(04:24):
at all because reading wasnearly impossible.
So you know when you go downthe symptom list of PCS and what
is PCS?
And if you want a list of thesetypes of things like what is
post concussion syndrome, whatis CTE, how is post concussion
syndrome diagnosed, what is asub concussive head injury, how
to live with PCS, types oftreatments, what are symptoms
(04:48):
all these types of questionsthat you might have or somebody
else might have for you.
We actually have an FAQFrequently asked questions on
post concussion Inccom that youcan go to.
I will link it in the episodedescription.
That kind of just answers allthese.
They're not super in-depthanswers, of course, but they
definitely give you a basicunderstanding or where to go
(05:09):
next to get you know more help,different types of Specialists
you can see in your recoveryjourney.
Sometimes concussion specialistis a little too general.
So definitely something thatyou can take a look at and maybe
it'll help you out now.
Another comment that I gotduring all of this was it's
really bad, it's rude, it's.
(05:31):
I can't believe you For tellingpeople they won't get better.
This is really disheartening.
I don't think you're helpinganyone and you know I'm just
gonna throw this out there thatI do all of this in my own time.
There is sponsors on thepodcast but, believe me, this
costs a lot more than you couldimagine and beyond what sponsors
(05:54):
help us with.
So this is all actually out ofmy own pocket.
So when people kind of get likedefensive and Kind of harsh
towards me, I do take it alittle personally, just because
all of this is just help people.
That's why it's here, that'swhy we accept donations.
All that, because all of thisis Is just hard work, and I do
(06:18):
it to help people and for noother reason.
And so Talking about chronicillness after a concussion is
not telling you that you won'tget better.
I'm hoping you all do.
I just know that there is thefew that do experience this like
I did.
I do know there's others thatyou know they're symptoms one
away, but they're still ill andMaybe they're questioning it or
(06:41):
maybe new symptoms that arearising, but they don't relate
to that concussion symptoms list.
So they can't figure out what'sgoing on and they just, you
know, throw it in thatconcussion bucket, like I talked
about in the last episode.
So it's important to talk about, because you may not relate you
likely will get better, becauseit's unlikely that you do
(07:01):
become this At the moment withbasic, current research but it's
important for those few, evenif it's two out of a few
thousand people, that this helps.
That's what matters.
It's really about the smallportion of people and just to
create awareness, because we'rehere for everyone.
(07:22):
I'm here for everyone, frompeople who have PCS for a month,
for parents who are dealingwith their Children having PCS,
the opposite, everything.
I'm here for our families,caregivers, support workers,
specialists.
We're here to create awareness.
We're here to help.
(07:42):
Well, I say we all the timeI've been really working on that
.
It's just me I had a post aboutthis the other day that I do
all of this.
There is no other team behindme.
So, yeah, but I do believe thatit can help a lot of people.
So the last episode, if it madeyou feel worried, try not to.
(08:02):
Of course, it's really hardwhen you feel like you're never
going to get better, but itdoesn't mean things won't get
better.
It's just, you know, sometimesthe roller coaster recovery is
up and down and right and left,and sometimes you hit roadblocks
, but it doesn't mean that youwon't get around them.
And so another thing that I gotasked about a lot, which kind
(08:23):
of relates to that, is how do Iknow what stage I'm at?
Well, if you're really new toPCS and I don't want to make it
seem like it's not a long time,and remember I am not a medical
professional.
I read articles but no MD here.
But I'd say if you're stillunder a year or two years, I'd
(08:46):
say you have so much potentialto improve your symptoms, you
have so much potential toimprove your symptoms at five
years.
I've improved all of mine.
Between year two and five therewas a really big jump in
symptoms and five and seven andthen after that almost all of
them were gone and then therewas just a few things to sort
out, like a few things withreading and things like that.
(09:08):
So you know, sometimes thosebig jumps happen later on.
But if you're around, then justreally focus on your recovery.
And you know, if your symptomsare all on that post-concussion
symptom list, then that's mostlikely from basic understanding
of how this stuff works, thenyou still have PCS and that's
(09:30):
okay because you can recoverfrom PCS.
And I had this conversation theother day on concussion connect
about why do I call it PCS andnot a brain injury, and there is
no problem with what terms youuse.
I have a help series on this.
To me, a brain injury is whathappened.
I had a brain injury.
(09:51):
I had a concussion, wherepersistent concussion symptoms
or post-concussion syndrome issomething I have.
It's more like the illness.
It's more like you have a tumorbut you have cancer.
I definitely have otheranalysis and they're better in
the help series.
I swear because I was focusingon that.
But I call it PCS instead of abrain injury because I had a
(10:14):
brain injury.
I don't still have.
It's not that my brain isn'tstill injured, but I'm working
on recovery and I like usingterms that you can recover from,
like you can recover from postconcussion syndrome and things
like that.
So kind of using that canreally help people, but it's
really up to you.
And how can I recover from PCSand how do I know what stage I'm
(10:34):
at?
So I'm gonna go back to thatfor a few seconds.
You know, really pay attentionto your symptoms.
Are they strange?
Are they beyond what postconcussion symptoms should be?
Are they weird?
Are things changing?
Can you not figure out whycertain things are happening?
And don't forget, bring it upwith your medical professionals
(10:55):
that maybe you're concerned it'ssomething else, and so a lot of
my symptoms didn't show upuntil PCS kind of stopped, and
maybe that's because I wasfinally able to be aware of them
, or maybe that's just how itworked.
And so how can I recover fromPCS is something I got a lot of
questions about, because sayingyou're recovered makes a lot of
people get hope, which is great.
(11:16):
Cognitive FX is aresearch-driven clinic that has
successfully treated thousandsof patients who have
long-lasting symptoms fromconcussions or other
brain-related injuries.
Cognitive FX has an innovativeapproach to recovery that uses
an advanced fMRI scan to map thefunction in your brain.
Treatment at Cognitive FX takesfive days to complete and uses
(11:38):
your fMRI scan as a guide andbaseline to ensure that your
treatment is personalized andeffective.
This means that you won't needto schedule and keep track of
multiple specialists, locations,dates, times or therapies,
because it will all be preparedfor you when you arrive.
Once you've completed theirtreatment, you receive a
personalized at-home plan tocontinue your recovery and gain
(11:59):
access to their online patientportal that has instructional
videos and resources for yourcontinued recovery Conveniently.
Cognitive FX also offers freeconsultations, so both you and
the doctors can ensure thattreatment is a good choice for
you and your injury.
Visit their website atCognitiveFXUSAcom.
Don't delay your recovery anylonger.
(12:20):
Find solutions at Cognitive FXtoday.
Welcome back.
So how can I recover from PCS?
I have an entire list on thatFAQ on post-accountation ink, of
how to recover from PCS.
And it's not how to recover,it's more like who you can go to
, because we have a lot oftreatments, a lot of specialists
that are available to you toget help, and so sometimes you
(12:45):
might not have thought of goingto a specific specialist.
So I really recommend checkingthat list out.
I also really recommend stayingpositive, and I mean staying
positive in the way that, okay,the eye therapy you did didn't
work.
Osteopath didn't help.
The massage makes things worse.
This doesn't help.
(13:06):
Eye therapy doesn't help.
Vestibular therapy doesn't help.
Physical therapy doesn't help.
You have to remember that allthese things take a really long
time to help, which is reallyfrustrating because they're
exhausting, but you also have toremember that science is
continuously changing.
For example, when I started allthis they said lay in a back
room, stay in that dark room,don't leave it.
(13:27):
Keep your sunglasses on, don'tbe exposed to light, muffle, all
sounds, kind of secludeyourself from the world.
And now we know that that is ahorrible recommendation because
it makes it really hard to getout of that dark room.
Pencil pushups have become veryadvanced with technologies and
the advancement of research andwe have treadmill tests and
(13:51):
heart rate tests to get backinto exercise and all these
things available to you now thatwe didn't have before.
So you just have to rememberthat this is only a short period
of time of 10 years, which ofcourse is a long time when
you're ill.
So next year, when I go to thenext medical conference I go to
on brain injuries andconcussions, who knows what they
can come up with?
(14:12):
So it's really important tokind of keep your hopes up that
maybe it's just the next thingthat's really going to make a
big difference in your world.
Now another question I got askedwas what chronic illnesses do I
have and how do they affect me?
Now I have a couple.
Some are you'd kind of expectafter the concussion and some
(14:32):
are not so expected.
So one is an autoimmunecondition which is called
Sjogrens, and so autoimmuneconditions.
There's overwhelming amount ofautoimmune conditions out there.
So autoimmune conditions, thecause of them is very unknown,
sometimes trauma, sometimes headinjuries, things like that can
(14:52):
be a cause.
So those were my causes, ortheir estimated cause, because
of course we can't guarantee alot of these things so that one
is like dry mouth, dry eyes, sothat one does give me headaches.
It really dry sometimes in mymouth.
It's really annoying,especially during the podcast.
I do have a lung issue withthat as well.
So they're working at the MayoClinic, as I was just there.
(15:15):
I have a lot of specialistshelping me, and so that's one.
And dry eyes is actuallysomething a lot of survivors
deal with.
So I really recommend thosepreservative free eye drops that
come in the little vials.
There's an eye mask you canfind on Community Recommends, on
Congestion Connect.
That I find really, reallyhelps If you find you get a lot
of eye pain.
You know you can use it atnight.
(15:37):
It only takes a few minutes andit creates so much relief and
it's really not overly expensive.
I think it's like $20 to $30.
So you know, affordable buthelpful.
Now I have something calledcentral sensitization disorder,
which kind of goes along thelines of fibromyalgia, chronic
fatigue syndrome and there's alot more in there and it's
(15:57):
probably the one that's the mostrelated to PCS, because it's
very rollercoastery, like mybody lives in bite or flight
kind of permanently.
That one causes really weirdsymptoms and I manage that a lot
with lifestyle things andthat's the one that I'm working
on the course for for CongestionConnect, because it's very
(16:19):
related and managing yourlifestyle with illness can be
huge, like sleep and relaxationtechniques and hygiene and
eating and exercise andfriendships and relationships
and all these things.
You know you put the wholepuzzle together and it can
really help you.
So that's really related tothat one.
The chronic fatigue issomething that I find comes in
(16:42):
way and I'm pretty good atfighting with it.
But there is the odd day whereI'm just the fatigue takes over.
For example, I'll sit in mydesk room sitting right now and
I'll like fall asleep sitting upand I'll just kind of accept
that I need to sleep for a day.
But you know, other than that,that one's not horrible.
I don't believe any of them arehorrible.
(17:02):
I have another one, pots.
As a lot of you know we have anentire POTS course on
Congestion Connect that is freewith Congestion Connect and that
one is kind of like.
A lot of people deal with somePOTS symptoms or related POTS
symptoms during concussionrecovery.
But POTS is usually a lot moresevere.
Like my vision used to justdisappear when I stood up too
(17:24):
fast.
I used to look drunk walkingdown a hallway.
So those are a few of them.
It kind of keeps going a littlebit.
But is it worse or is it better?
The PCS was one specificquestion that kind of made me
think a little bit and I wouldsay it's better, and not in a
way that it's better becausethere's no recovery for these.
(17:46):
I've read about recoveries forsome of them.
My doctors told me there is norecovery for me, at least at
this time.
They said it's not random, weknow why it's happening.
It's not going to go away, butit can get better and get worse
at certain times in your life,but it's not going away and so
the chronic aspect is definitelyharder to accept and get
(18:10):
through.
But once I got through that I'dsay it's definitely better,
mostly because it doesn't affectme every day, all day, in the
same way that PCS did.
It doesn't throw me to the wallso often because my POTS isn't
very severe.
Do a flare-ups, like I went fora hot bath and I ended up in bed
(18:31):
for like two days, I couldn'teven get up, I almost couldn't
land on one, and so I do havesome flare-ups of those things.
It's just habits.
Everything to do with mychronic illnesses are daily
habits that I can control, andnow that they've become habits I
don't have to think so muchabout them.
So it's not as crippling as PCS, at least in my mind, because
(18:54):
the pain in pulse congestionsyndrome was really awful and
what I do that doesn't have aton of pain other than my eyes
and my lungs.
Okay, there's pain, but it'sdifferent.
I find headaches are the worsttype of pain because headaches
don't allow you to think, walk,talk.
You know it's really difficultto kind of participate in
society.
A lot of my symptoms don'tprevent me from going out, like
(19:16):
noise sensitivity, lightsensitivity, things that prevent
you from interacting withothers I don't deal with.
So I definitely say it's better.
It's different though.
Pcs has hope at the end of atunnel where chronic illness the
hope is just to keep going orto manage it better.
But it's not that it'll end.
So it's definitely a differentperspective.
You know I'm affected every day, but some days less, sometimes
(19:40):
more, and it's very similar toPCS.
You know I find it's a littleless life-altering than PCS felt
.
Now there's so many requestsand questions and I did answer
some and if I didn't answer youI'm very sorry.
I am working through them.
Our latest podcast episode on myconcussions during chronic was
(20:00):
a hard episode.
It was a hard episode for me toshare.
I've been thinking aboutsharing this for months, like
probably six months I think andit was a hard door to open
because of all the questions,all the requests, all the you
know backlash for saying peoplewon't get better.
And I didn't say that.
I just said that some turn outwith chronic conditions instead
(20:22):
of just PCS, or PCS goes awayand then the chronic health
conditions are there.
Remember to check out the FAQ.
We do have concussion awarenesswell-being that I love.
It says concussions suck.
On one of the shirts we havepodcasts sweaters and t-shirts.
If you want to kind of you know, support this show.
(20:42):
There's one that says there'snothing mild but a concussion
and things like that.
So definitely check that outbecause I really love it.
I actually live in my fewt-shirts that are from that line
because they're my favorite towear around.
Make sure you check those out.
I know I talk about ConcussionConnect a lot, but I think
that's because it's where Ispend most of my time.
Do make sure you check that outas well, and I hope this helps
(21:03):
you.
And, believe me, if you haveany questions, don't hesitate to
ask.
I have no problem answeringeveryone's questions.
It just sometimes takes me alittle bit to get back to
everyone, and I hope you allhave a good day, or at least a
little less symptoms.
If you can Need more than justthis podcast, be sure to check
out our website,postconcussioninccom, to see how
(21:26):
we can help you in your postconcussion life, from a support
network to one-on-one coaching.
I believe life can get betterbecause I've lived through it.
Make sure you take it one dayat a time.
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Therapy Gecko
An unlicensed lizard psychologist travels the universe talking to strangers about absolutely nothing. TO CALL THE GECKO: follow me on https://www.twitch.tv/lyleforever to get a notification for when I am taking calls. I am usually live Mondays, Wednesdays, and Fridays but lately a lot of other times too. I am a gecko.