Love your Diagnosis

Audra Sisak talking about Autism and Epilepsy

October 01, 2021 Lainie Chait Season 1 Episode 2
Love your Diagnosis
Audra Sisak talking about Autism and Epilepsy
Show Notes Transcript

In this Episode of Love your Diagnosis, I talk with Audra about her primary diagnosis of Autism and Epilepsy. 
Audra has a positive outlook on these conditions she has to live with and after trialling a cocktail of medicines over her life and turning down the option of having a VNS inserted into her body, she has found a balance of managing, particularly her seizures with a mixture of Eastern and Western approaches such as:

  • Keto Diet/High Protein
  • Yoga
  • Breathwork
  • CBD

It's a  highly interesting story and well worth a listen for those that are looking for ways to manage similar conditions.


To find out some ways you can look at using traditional plants as part of your wellness journey click on the link below
https://www.happyherbcompany.com/

You can get my book here which is a raw and honest dialogue of how I went from completely using allopathic medicine to manage a diagnosis of epilepsy, to only using a small amount of medicine and managing the rest with lifestyle choices and other wonderful plant medicines and supplements
https://electrogirl.com.au/product/electro-girl-living-a-symbiotic-existence-with-epilepsy-paperback/

Also you can sign up to my quarterly newsletter below where tips and resources will be shared for you to feel into and decide if they are right for you. Knowledge is power.
http://eepurl.com/hJfOHD

A little side note:
These shows are meant to create food for thought for people going through similar situations. Planting seeds of information about things that perhaps you never knew could and might assist in treating and managing the symptoms associated with your diagnosis.

Alternative treatments are out there to be used, alongside alopathic medicine, or instead of.
That part is completely up to you, but gaining knowledge is the first part in empowering yourself back to health.

I really hope you get some good ol' nuggets of info from these interviews so you can go and start researching yourself and perhaps even start experimenting on the treatment that feels right for you!

I do everything for this podcast with no financial backing why? because I think it's important to share people's stories and successes in order to empower everyone!! As much as I love it, it does take a huge amount of time and if you would like to donate to the running of the podcast so I keep the podcasts running and free of annoying ads, please fell free to donate anything you feel by clicking on the link. Gratitude!
https://www.paypal.com/donate/?hosted_button_id=3TQ95ZU6EXBFQ

Thanks for listening and thanks for wanting to empower yourselves to be the best human you can be!

Lainie:

Well, hello. I'm Lainie also known as Electro Girl, and I'm an advocate for empowering people to get back in the driver's seat of their diagnosis. See , I was diagnosed with epilepsy 30 years ago, and basically was never satisfied with hearing from a doctor that pharmaceuticals would be the only approach to controlling my seizures. I just, wasn't going to take it out of my way mortal. So I committed many, many years to researching and finding an answer outside of the Western medicine approach to find a more holistic approach in managing and treating my epilepsy and seizures to love your diagnosis. Podcast is a show about exactly that each week we will be looking into the life of someone who has been diagnosed with a condition or illness and has succeeded in managing their diagnosis, both in and outside of Western medicine. To start off, we will look at the Western medicine, prognosis and approach to dealing with their diagnosis inside the square. Then we'll dip our toes a little deeper into this story where we talk about other empowering modalities that worked for those people outside of that square, basically what put them back in the driver's seat of their diagnosis. So hang around with me while we explore living in and outside the medical square, when it comes to loving your diagnosis. So this is podcast number two, and we're today here with Audra CISAC and because I'm an Aussie , I thought Audra was from Australia, but she's not. And I'm so excited that she's not so high.

Audra:

How you doing? Oh, I'm very good. So excited to be here.

Lainie:

Really excited to have you. Cause you're a podcaster too . I just heard yes.

Audra:

Two shows disability related .

Lainie:

Brilliant. We'll put that in the notes underneath what, where to listen to your podcast as well. But for now let's just dive straight into because you've got a lot going on. It's very exciting in your head

Audra:

So much .

Lainie:

What have you been diagnosed with and basically how long ago? I know there's a few, so get straight into it.

Audra:

I feel like I need one of those scrolls to get everything! My main primary diagnosis is autism and epilepsy, and those really are the two that affect my life. I think the most and really in a positive way for the most part, but I have a whole list of dyslexia, dyspraxia, depression, anxiety , uh , Reynards and restless leg syndrome.

Lainie:

Wow. Are they all interrelated or were you diagnosed with them, like kind of one at a time. So I imagine a doctor wouldn't have just said, look, you got all this stuff going on or did it happen over a period of time?

Audra:

Yes. This has happened over a gradual period of time. And honestly, this really started with the epilepsy. It's all for me , epilepsy. Right. It's just kind of downhill after that. It always is .

Lainie:

But love your diagnosis. That's what we're here to represent. How old were you when you got diagnosed with epilepsy?

Audra:

I was, I think around 35 when I was diagnosed. It was, yeah, it was fairly recent and unfortunately I've had it my entire life because I have idiopathic epilepsy. I was born with it. So I've had all these problems my whole life and they didn't know why.

Lainie:

Okay. I'll just explain to people listening that idiopathic anything or particularly epilepsy is that they don't know where in the brain it's coming from. They can't just say it's in the temporal lobe or it's in the ,e right parietal lobe or , um, or in the hippocampus, they just don't know. So it makes it a lot harder for them to treat it. Yeah . Would you agree with that or Audra ?

Audra:

Oh my gosh. I've been on so many different medications and so many treatments and of course I get the heavy tried CBD and keto . Yes, I've tried .

Lainie:

All right. Well then you were diagnosed at 35, so basically set the scene of what your life was like up to then were you partying, were you a bookworm, were you a complete nerd and just at home and like an introvert, or like, what was the scene like before your symptoms started getting so bad that you had to go to the doctor.

Audra:

Oddly enough, I was an introvert. I did not party. I didn't do anything occasional drink, you know, with my friends and whatnot to go out. Uh, but other than that, I just, you know, my autistic side was like, no, I'll stay in.

Lainie:

So you weren't really a partier that wasn't bringing on any symptoms late nights that wasn't into it, not alcohol. And like you say, not that much.

Audra:

Well, late nights . Yes. Because again, I am an insomniac. I don't ever sleep hardly. And at that particular time in my life, I was just finishing up grad school for the second time grad That's graduate school. So professional school , uh , where I was getting my second masters In what ? Uh , psychology.

Lainie:

Oh , good . Well, I guess with any illness, there's this turning point when, you know, you kind of can't stop ignoring it or being in denial. In my case, it was totally denial. Yeah. What was that pivotal point for you where you went, I've got to check this out. Do you have grand mal seizures?

Audra:

I have all of them, unfortunately. I mean, you could pretty much pick and choose a symptom and I've probably had it unfortunately, but the pivotal point was, and I remember this like clear as day, even though I don't remember the actual time that happened. I was driving to work and I remember getting in the car and I was living in , long island, New York at the time. And I got in the car and I started driving. That's the last thing I remember it, I, at that time I worked in a place called garden city. It was still on long island. Okay . I had driven all the way to New York city. And I don't remember that span of time. How

Lainie:

How many kilometres would that be?

Audra:

I don't know, because in America we always judge everything by time. So it was about two hours of time.

Lainie:

Holy Shit. And you don't remember any of it, autopilot ? Is that because the after effects of the seizure doing something to your brain, not reconnecting properly, dangerous. Yeah .

Audra:

we can only guess that that's probably what happened. And I re I remember snapping out of it when I hit the bridge to cross over into the city and I went, ah , that's not right. Pull over.

Lainie:

Wow. How did you feel? I'm just going to take a little segue to, how did you feel when you clicked, when your brain basically clicked back into working and you realized you lost all that time and you were driving?

Audra:

Uh, wow. So I flipped out, I had a full on autistic meltdown with pulling my hair and picking at my skin. I called I was crying because I honestly had no idea where I was at what was happening. And because I was in such a meltdown mode, I couldn't even hardly remember my own name.

Lainie:

How Long ago was that?

Audra:

That was about five, six years ago when I actually got the diagnosis.

Lainie:

So you went to the doctor and at that stage, did you have any inkling that epilepsy was even going to be on your radar? Yeah, I guess my question is, what , what kind of tests did the doctors run immediately on you?

Audra:

Because I had been diagnosed with everything else up into this point. Cause at this point I already knew I was autistic and I'd been diagnosed with fibromyalgia, which was just a BS diagnosis. And I, you know, because I had complained of constant pain in my leg. Uh, so I was honestly thinking it was multiple sclerosis. So I went and saw the neurologist. They did an MRI, you know, the head MRI. And then they did the EEG or for the electrodes.

Lainie:

They were always fun. (insert smile)

Audra:

Yes. That was fun . And I had to have the one where it was for like five days on my head. Yeah. That's when it came back that I had epilepsy and I, if my brain dropping into my stomach could be described as a physical feeling. That's exactly how it felt when I got that diagnosis.

Lainie:

And what was the actual, because for those listening, there's over 40 different kinds of epilepsy. So , um, I know people think that there's only just like one is the grand mals dropto the floor, froth at the mouth, you know. So which epilepsy did you get diagnosed with?

Audra:

I have complex partial focal seizures with secondary generalized seizures.

Lainie:

Wow. What a milkshake? Yeah ,

Audra:

It's always, that's always like, woo . What are we getting today?

Lainie:

That's pretty big. Does the epilepsy and the autism co relate. So if you're having an autistic experience, does the epilepsy then play a part in that as well or vice versa? Or are they completely different parts of your brain?

Audra:

I think they are very much overlapped because of my emotions, because I have a hard time labeling my own emotions. I can label them and others, but for me it's hard. And then so to have a seizure and then be very upset by something. And then I can't label the emotion and then it puts me in a panic even further. And so when I have a seizure, one of the symptoms or the signs that come a hundred percent of the time is I will immediately cry. And I don't know why.

Lainie:

You're lucky you can cry. I mean, people on medication , some people just cannot access that tear because t hey're so doped up with the meds so good that you can cry, still suppose. So you've got the diagnosis. What was the initial protocol that you w ere given to go o n t o, you know, leaving the room? What was the protocol to try and maintain the electrical imbalance in your brain?

Audra:

Oh, geez. Meds, keto diet, and obviously a hundred percent, no more driving.

Lainie:

Is that still playing out now? You still can't drive?

Audra:

Yes. They have told me that there's no way I'll ever be a hundred percent seizure-free and I have lost my license.

Lainie:

Okay. That's a big moment in order to love your diagnosis, you have to love every part of it, the treatment, the outcomes, freedoms, and liberties that you've gotten, and what have been taken away. So, yeah, that's a big one, but you've obviously dealing with this .

Audra:

I am. And it's , uh, I think part of loving your, your diagnosis and dealing is loving even the bad parts of it, which losing my independence in that way was, but what's the positive side. I get to be chauffeured in every way

Lainie:

In a hummerzine?. Yeah . Maybe

Audra:

Sometimes, never know. Yeah. Oh, fantastic. All right . Most of that's exceptionally big. Were you pretty compliant when you left the doctor's office and had the, you know, the prescription pad and the comments about driving and stuff? Were you compliant or did you want to rebel? Definitely wanted to rebel, but I have a son and , uh, his life is so important to me. And so I need to be here for him.

Lainie:

What a beautiful mother moment. Yeah. You , had other people to think about. Yeah. Which is a big one as well, because when I was going through my stuff, I only had myself to think about, so my choices were very much about me. Nobody else came into the equation except me. So my choices were quite out there in a way, your son. anchored you to just deal with it .

Audra:

Yeah. And he is , uh , autistic and has the same exact type of epilepsy that I do, you know? Cause ours is genetic. So I spend my time helping him as well.

Lainie:

Did you ever think to get a test before having a baby or it just didn't matter? You were like, if they do fabulous, if they don't fabulous.

Audra:

I actually was diagnosed after he was already born. They had no idea. And again, I had had signs during my pregnancy and I had a very hard labor and hard delivery. I almost died.

Lainie:

How did the , the pregnancy and all the hormones related to that affect your conditions? Did they stop? Did the symptoms stop during the pregnancy?

Audra:

No, it got worse. I remember during my pregnancy feeling very terrible. I never wanted to be pregnant again and I wasn't pregnant the one and only time.

Lainie:

Okay. So the hormones, cause that's another type of epilepsy as well. Catammenial epilepsy actually just before women, I'll be late on menstruate. The , some women who get pregnant, the symptoms actually disappeared .

Audra:

No. And , and I I've had hormonal seizures too, because I've had a hysterectomy as well.

Lainie:

When's your book coming out. (said with a laugh)

Audra:

I really do need to write one

Lainie:

So you've, you've been compliant. You've had other people to think about, you've taken the meds. Everything's kind of levelling out, found a kind of balance where you can live with that part of your life, but the symptoms disappeared on the pharmaceuticals or not?

Audra:

Um , my symptoms have not disappeared. However, they have minimized to the point where I can , I can actually work part time now, which is great. I'll never be able to a hundred percent support myself, you know , um, or my family just because that's the way it is when you have multiple disabilities. Um, but yeah, it's enough that I actually had gastric bypass surgery to reduce the hormones. That way I had my gallbladder removed and then I, had a hysterectomy. And with all these surgeries, I was able to get down to about three to four seizures a year instead of about 300.

Lainie:

And are you taking medication pharmaceuticals for any of the other list of diagnoses that you had you on a plethora of meds to find the balance for all of those as well? Or is one pill kind of helping with a lot of them?

Audra:

Uh, no. I take , uh , several meds. Yeah. Gabapentin, Keppra and Lexapro and Zonegran

Lainie:

And CBD. You were mentioning as well. Yeah.

Audra:

And it's, it's stuff is legal here in Washington state. So yeah, absolutely.

Lainie:

So that brings me actually to my next questions . Have you tried anything outside of the Western medicine approach to help address some of the symptoms so that you can take a bit less pharmaceuticals, but still maintain that balance?

Audra:

I do have very high protein diet, especially now since my surgery. Um, so that's basically Keto and then I do yoga and breathing exercises. It's not that it helps with the epilepsy itself, but it definitely helps regulate my emotions and my mental health, which keeps my seizures down.

Lainie:

And do you find also that the diet stuff , um , assists with the autism? . No.

Audra:

No I'm autistic. I'm autistic, that's it ?

Lainie:

It doesn't matter how much kale you eat. You'll still be autistic. It's great that you finding some balance. So you've found some success with the keto. Is that what you're saying a little bit, but then you also thought about taking CBD, which is considered in Australia, still illegal, unless you only get it from a doctor, but you considered CBD in place of medicine or as part of the management plan,

Audra:

I did discuss it with my doctor and we put it in as part of the plan because he just felt with my complex type of epilepsy, there was no way to do it without both sides, but he wanted to see if I could use it in conjunction with the others. And it actually worked out. I was able to reduce the amount of Keppra and zonegran I was taking and incorporated CBD. And honestly my emotions are much more, like I said, well regulated, I don't know . It seems to be working a lot better.

Lainie:

Brilliant. Was that your choice or was that his choice?

Audra:

So that Was definitely my choice.

Lainie:

Why, what led you to want to do that? I just I'm asking because this podcast is really about planting seeds for people , um, about stuff that they may not have thought of doing for their own symptoms and conditions and stuff like that. So what made you want to try something like that instead of all the medicine?

Audra:

Yeah . Uh, so I'll just come out and say, my neurologist was not on board with my plan and my plan was to lose weight, get my gallbladder out, have my hysterectomy , get my hormones regulated and then go on the CBD. Literally, this was my plan. And it was because I wanted to try this, in a healthier way, including medicine. Do you know, like an individualized combined treatment plan using both Eastern and Western medicine? See what I could do without having surgery on my brain because his plan was to have the VNS placed or the, the, the vagal stimulator. And I just didn't want it. So, this was my plan. And two years later I'm more healthy and working better. Like I said, than I ever have. And it led me to this because honestly, when I saw how many medicines they want to put me on, even after the brain surgery, I was like , uh , there's gotta be a better way.

Lainie:

Magnificent Audra in all of this, what I'm hearing is and what I'm so happy for you about is that you still had a choice about, where you wanted this to go. Even though some choices are completely taken out of your hands, but somewhere in there, you found a way to empower yourself with choices that you could make and research that you did do for yourself, which is magnificent. Is there any other choices that you actually made that went against what the doctors were saying for you?

Audra:

No, those, those were the big ones. I still have not had the VNS place and he's happy with the way things are. So, you know, I still haven't gotten my license back, but that's okay. Like I said, I'm glad we're doing all this .

Lainie:

You found a peace with everything! You know about co-morbidities are you aware of that word? Okay. Yeah . So for those that are listening, that don't know what co-morbidities are. They basically are the symptoms that you experience when you've been diagnosed with something that perhaps aren't related to that diagnosis, you know, with a lot of people with epilepsy, they start to develop anxiety issues or depression issues because of basically what they have to endure, and the nature of the condition. So I ask you this Audra is any of those, like anxiety, depression, are they co-morbidities for you or have you always had a predisposition to being anxious?

Audra:

Again? Interestingly enough, because I've had epilepsy my whole life it's like asking, did the chicken come before the egg or the egg before the chicken? And we're not sure because I was diagnosed with anxiety and depression when I was 15 years old. I had an ulcer when I was 12. So we're not real sure what happened if I had these issues before, because again, I'm autistic and I'll tell you guys, here's the one stat that I can guarantee for everybody, autistic people. 34% of autistic people are also diagnosed with epilepsy. So those with cerebral palsy, about 30% of them also have epilepsy, which one came first? Not sure.

Lainie:

Yeah. That's not necessarily a co-morbidity either . They are two distinct conditions linked to the brain. Yeah. All right. Well, my last little question to you really is if there's someone out there listening, or many people listening that kind of can relate to you and you have like a tip or some advice about treatments and management and things like that, what would that be for people that are going through what you are?

Audra:

Oh boy , um, learning to advocate for is very hard, but your voice matters. It really does. I'm doing the research. I'm not saying just looking on Google, but actually opening up a book like the one you wrote or looking on the epilepsy, blogs and looking what other people have done and just trying it, just see, because maybe, you know, you're taking a medicine and it's, you're having side effects. Well, you don't have to live with those side effects, you know, use your voice to get something different because you can live with minimal seizures or no seizures and live a good life.

Lainie:

And I guess anything on the autistic level for people that are, that maybe don't have epilepsy and there may be a management tool or tip that you can share with about being in the driver's seat for themselves, you know?

Audra:

Oh, about being autistic. And that one's difficult because I've spent my entire life. It wasn't until I was 40 and I had a midlife crisis and I decided to become a comedian . So all I can just say is hang in there because it gets better. I promise.

Lainie:

Okay. That's beautiful now we'll put it in the notes, where can someone find your podcasts?

Audra:

Oh, so we are on anchor, Spotify and apple podcasts. We have two from at my producer productions company is Superman productions and we have two autistic artists. So we, you know, feature guests , uh , every month. And then we have another show every month called dating with disabilities, where we talk about all kinds of stuff. Be wary of that show 18 and older.

Lainie:

Oh my God, my favourite. I'm going to be looking at them. Thank you so much for your time. And , and just for sharing your story and just some of the things, that have helped you and your bravery, the fact that you're just out there in comedy, you know, if you can't laugh at yourself who can you, laugh at huh .

Audra:

Exactly. Thank you so much. Thank you for having me.

Lainie:

The love your diagnosis Podcast is proudly produced by me. To Sum up today's podcast with Audra. The main primary diagnosis is autism and epilepsy, even though she has lots of other things on her plate diagnosis wise, these two are the things that, commandeer her life she's been on many different medications. She was actually diagnosed with idiopathic epilepsy, which doesn't actually have an area in the brain where it's specified from . So it makes treatments really hard. So she's been on a plethora of medications and the final straw came when her neurologist, wanted her to have a VNS, which is a Vegas nerve stimulator implanted under the skin in the chest. What happens then is that the device can prevent seizures in people that are drug resistant. So the Vagus nerve stimulation prevents seizures by sending regular mild pulses of electrical energy to the brain via the vagus nerve. It is sometimes referred to as the pacemaker for the brain. Audra Wasn't going to accept this as an option. So what she did was she took control a little bit of her diagnosis. She wanted to use both Eastern and Western combined practices in her treatment therapy, which included Keto, which is a high protein diet, yoga breathing, and regulating her emotions and mental health. So this stuff doesn't necessarily stop the seizures, but what it does is control them more. And this is what taking control of your management is all about. It's being diagnosed with something and going, Hmm , actually, I don't think I want to go down that path. I'll see what I can find. That's going to work for me. The silver lining for Audra is that to love her diagnosis, she has to love even the bad parts of it. And that includes her license being taken away. But you know, the silver lining was that she gets to get chauffeured everywhere. Her final words to everyone are please research and experiment for yourself. Be an advocate for yourself, as hard as that is sometimes be back in the driver's seat because your voice does matter. Audra found that using CBD as part of her management plan also was able to help her reduce the incredible amount of medication she was on. So for her, it really worked in reducing the seizures . CBD is available very readily in the United States. And in Australia, we're a little bit behind on that level, but slowly we're making waves. You know, firstly, they had to approve hemp seeds because apparently they could get your high . What a joke. Anyway, now they're approved and people are working really hard to get cannabis as medicine allocated to the people that need it the most. And I am totally in that court. They're having CBD available to all patients that need it. If they don't want to use pharmaceutical medicine, only think of other ways, you know, be creative with your, with your diagnosis. You don't just have to take one person's opinion about what the outcome for you is going to be. And it's really important that other people share their stories so that this information gets passed on. If you enjoyed today's show at this stage, all you have to do is listen and tell your friends about it because there could just be a story on here that they've got diagnosed with or that they can relate to where they get to think outside the square. And a few seeds might be planted in their brains about other ways of dealing with the , besides just what the original diagnosis and prognosis is. Thanks for listening. If you want to learn a little bit more about other options for what you can utilize for your wellness journey, click on the link below to the happy herb company. I've got lots of amazing products to assist in getting you started in your wellness journey. Thanks again for listening. I'm Laney change .