Love your Diagnosis

Nat Holcroft talking about AVM and Epilepsy

October 30, 2021 Lainie Chait Season 1 Episode 6
Love your Diagnosis
Nat Holcroft talking about AVM and Epilepsy
Show Notes Transcript

In this Episode of Love your Diagnosis, I talk with Natalie Holcroft about her diagnosis of AVM - Arterial Venous malformation at age 14 which then led her to develop Epilepsy resulting in five brain surgeries in 20 years

FIVE BRAIN SURGERIES in 20 YEARS. Three for the AVM at age 14 and then two related to the epilepsy later on in life. Nat is only 36.

Nat's story was particularly interesting to me as she has an outlook that "everything happens to people for a reason" and that having these brain related issues has humbled her and made her a more empathetic human.

As much as she would like it, allopathic medicine is really one of the only options for her as she would be risking her life if she doesn't find a sweet balance that her brain can handle to remain electrically stable. She has attempted Keto and other modalities to assist the meds but is resigned to loving her diagnosis in other ways.

To find out some ways you can look at using traditional plants as part of your wellness journey particularly for brain enhancing herbs 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 about different topics of wellness that you can  feel into and decide if they are right for you. Knowledge is power.
http://eepurl.com/hJfOHD

If you have a story that you think other people will benefit from and you would like to be on the podcast then contact me at
[email protected]

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 allopathic 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 instead of just letting someone else direct your health decisions.

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  0:01  
Nat, I'll say Natalie Holdcroft because that's your full name. Did I pronounce that right?

Nat  0:05  
You sure did.

Lainie  0:06  
Okay, but you like Nat, huh?

Nat  0:09  
Yeah. Oh, yeah, go by either one.

Lainie  0:11  
All right, let's just go NAT. It's a lot more, you know, sort of intimate. Where are you from in the world?

Nat  0:17  
I am in Connecticut, USA.

Lainie  0:20  
The US A, that's great. You're the second USA and you're the second American that I've had on the show, which is amazing. Alright, well, let's start with what you've been diagnosed with. How long ago and a brief description of what it is.

Nat  0:36  
Sure. I was diagnosed with AVM? arteriovenous malformation, epilepsy, and depression, anxiety, and dermatomyositis.

Lainie  0:50  
Oh, that's a big one. What's that? I haven't heard of that before.

Nat  0:53  
It is an autoimmune disease. And I haven't heard of it because it's pretty rare. Apparently. That's my MO I go for the rare ones.

Lainie  1:01  
Congratulation. 

Nat  1:02  
Thank you go big. It is a autoimmune of the muscles, skin and connective tissue.

Lainie  1:12  
Wow. And were you born with all of that? Or did they develop over time?

Nat  1:17  
No, the only one I was born with was the AVM and I didn't know it until it ruptured when I was 14, and just

Lainie  1:25  
a little brief description of what IBM is a VM.

Nat  1:29  
It is, this one happened to be in my brain, I guess they can be anywhere in the body. And it is when the arteries going into the veins, they don't have capillaries. So the blood is going too fast into the veins. So it starts pooling and then it too much pressure. So it ruptures causing a big blood clot. Wow. So it was in my brain. So that blood clot became the size of a baseball in a very short time.

Lainie  1:58  
That's quite big. Yeah. So how long? How old? were you when you were diagnosed with that one?

Nat  2:03  
That was my 14th birthday.

Lainie  2:05  
Oh, Happy Birthday on the actual day. Yeah, um, with seizures associated with that massive clot, or did that come later?

Nat  2:14  
It came, um, I guess two months later. And it was just because there's they said, of the scar tissue and too much raw blood on the brain.

Lainie  2:24  
Okay, great. Well, not great at all. That's pretty, pretty full on for a teenager, you're usually supposed to bleed from your vagina at that age.

Nat  2:35  
Yeah, that was probably happening too.

Lainie  2:39  
So, I guess at 14 You know, did you have quite a normal life? Was there a lot of stress going on for you at the time? Any like trauma? Nothing like that.

Nat  2:49  
No, I I was like, the girl you hated to hate. I had everything. Okay. Yeah, I was like MVP in soccer. I played, you know, ran track. I did. I was swimming. I did. Boating, we lived on a lake like I was that girl you hated. And I lost everything. Yeah, I lost all that.

Lainie  3:13  
Well, that's a big lesson, isn't it? Yeah. You were kind of did you have a bit of an ego at 14 about all that.

Nat  3:21  
Yeah, I I thought I was the shit.

Lainie  3:25  
Yeah. Well, you still are, you just a different smell of Shit. Okay, that's really that's, that's really fascinating. So everything was like, picture perfect in inverted commas.

Nat  3:40  
Yeah, exactly.

Lainie  3:43  
Were you were you experimenting with like drinking or smoking cigarettes?

Nat  3:47  
No, I was very much into sports, as were my two sisters. And we just we were very athletic. We played a lot of soccer swimming. No, I 14 I was I was top of my class. I was no there was no drinking drugs. Nothing like that.

Lainie  4:07  
Okay. You were snow fucking white. Huh? Well, then what? What was that turning point then what happened? Because of the clot that you thought I got to check this out. This is this. I can't go on this something absolutely not right. 

Nat  4:21  
It was the end of seventh grade. I had perfect vision and all of a sudden, within a very short time I couldn't see right in front of me. And I told my mom and she wears glasses. She was like, yeah, we'll get your glasses before the school next year. And then all sudden, I started having migraines and throwing up and I was like, something's wrong. And she's like, Yeah, migraines will get checked out, you know? And so she wasn't concerned. You know, nothing was triggering anything for her. And then we were on vacation on Lake Ontario and I had shooting pains up my arm. And I was crying to her and she was like, yeah, it's a pinch nerve, no biggie, like, whatever. And she left to come back to Connecticut and told my grandma like she has a pinched nerve. Don't let her cry too much, you know, like, she'll be fine. And my mom came back in, you know, the end of the week to pick us up. And I said, my, my head hurts. And she's like, Yeah, I'm making lunch, go lay down.

Lainie  5:22  
Oh, she must feel great about this now!!

Nat  5:25  
Well, that's just how we were raised. You know, it's just nothing was a big deal. And I went to lay down, and my mom said, she went to eat lunch. And she just felt this weird feeling that she needed to check on me. And she came inside, and I was blind. I couldn't see her. And I kept saying, Mom, where are you? Where are you? And she's like, Natalie. I'm here. And I was like, I can't see you. And she tried to sit me up. And I just started vomiting everywhere. And she said, within half an hour, she knew that something was wrong.

Lainie  5:58  
Yep. Probably when you can't see her and you're vomiting. Yeah, that might might mean that. Yeah, let's go check this shit out. Yeah, mother's intuition. Uh huh. So what kind of tests were done immediately when you got into the hospital? Was it a hospital? You went straight to? 

Nat  6:14  
Yeah, so they called 911. Because my mom didn't want me throwing up in her car. And it was just a small town hospital there. And normally, they said they do spinal taps first to check for meningitis. And the CAT scan happened to be open. So I went in. And they came back out to get my mom who was there with my grandma and said, You got to come back here. And they brought my mom and grandma back into a little room and said, We're sending her to the trauma centre. This is too big for us to handle. She has a blood clot the size of a baseball in her brain, and we can't do anything for and they were going to airlift me there the helicopters out and they said, you can meet her there. She's already on her way.

Lainie  7:02  
Wow. Um, was it immediate surgery? What are they? What are they have to do?

Nat  7:07  
So when I got there, they said that they had called in one of the top neurosurgeons. And my mom said, when she saw him, he walked in, in a suit. So she knew they had called him in from, you know, a fancy dinner or something. And he said, you know, she may not walk may not talk, or have a left field cut. And this could be fatal, but we're gonna try. 

Lainie  7:30  
So he wasn't pissed off that you stopped. He's shrimp cocktail dinner?

Nat  7:35  
No, I guess. I guess not. It was pretty cool guy. And my, my mom just kept saying just get in there, just get in there. But they came back out and handed her my hair in a bag. They said for the next 48 hours, we won't know if she'll make it. Wow. So they called my dad who was back in Connecticut, they called my, you know, everyone to come in to say, you know, to see me, because they didn't think I was gonna make it

Lainie  8:02  
Do you have pictures of yourself at that time, I suppose  whouwould be taking a picture?

Nat  8:06  
No. And that's what my mom said that's her biggest regret is she's like, I wish I had a picture shoot that they had put me in an induced coma for the next I forget, 2 weeks or something like that. Because they said if they had woken me up, I would have died from the pain, it would have raised my blood pressure too much. And I would have made the bleed again. So first surgery, they just took out the blood clot to make it so I can ease the pressure. Right, right and take out the bone, you know, to relieve the pressure. So then the next few weeks were just survival. And after they realised I was going to make it I stayed in ICU in the trauma centre. And I just I remember asking them constantly to take my catheter out. I was like, just please, I'll get up. And they said no, because I didn't have a bow and I couldn't get up. I have to wear a helmet. And so finally I said where's my helmet? You know, like, give me the helmet. I'll get up. And then I remember being sent to a the oncology floor because they said that that's where I fit in. I had no hair. They had no hair, and I needed it really quiet. It's a really quiet floor. So I was sent there. And then I would need more surgeries to remove the AVM's and I I believe they said five other aneurisms, they would still have to remove.

Lainie  9:30  
Okay, so how many surgeries did you end up having for this?

Nat  9:33  
For that when I the first time in the hospital, I had two surgeries. And then the AVM did grow back. So I had gamma knife to remove  it was too deep and too close to the brainstem.

Lainie  9:45  
Wow. So you've had three brain surgeries at 14?

Nat  9:49  
Yeah, for the AVM and then for epilepsy. I've had some brain surgeries as well.

Lainie  9:54  
Okay, we'll get into that in a sec. How long were you in hospital?

Nat  9:58  
I believe it was about six weeks.

Lainie  10:01  
That's nothing for three. You know, that's pretty incredible, actually for three brain surgeries. So well, you know, when all this was happening, were you in denial about this? or where you fully present with what was going on?

Nat  10:13  
I had, I think, at that point. I mean, I was young enough that I had no idea what was going on. I was just like, if they said, you know, we're we're doing this, you know Cat scan today. And this angiogram is like, yeah, okay, whatever. And so, everyone was like, Yeah, you're so brave. But at that point, you're just like, What other choice do you have? What else are you gonna do? Like, no, I'm not doing it. I.

Lainie  10:38  
Okay, so did you did you lead a pretty normal life afterwards, where you're back doing gymnastics and triple pikes and stuff like that?

Nat  10:45  
No, the only thing I tried to go back to, I tried soccer. And my neurologist said, No more soccer, because you can't get a ball to the head. And then I ended up having a grand mal seizure on the field. And I was embarrassed to go back. And then I tried track. And it was eighth grade. And I, of course, was sweating running. And I guess they said, I sweat out my meds. So I ended up having a seizure at track. And I was embarrassed to go back. I think I did go back to track but it just wasn't the same.  I wasn't my normal, athletic self, you know, as I didn't have all the muscle tone anymore. I was just laying in bed for six weeks, I just wasn't me

Lainie  11:34  
And your brain needed a chance to re you know, understand what what its new role is, you know, with with bits and pieces removed. Okay, so moving on to the epilepsy part of it, then, were you diagnosed with that as a byproduct of what happened? With the veins? Yes. And what kind of epilepsy were you diagnosed with?

Nat  11:57  
At first, it was grand mal seizures, tonic clonic seizures, and then they realise I was having seizures all day long, you know, the focal aware seizures or the that I would be aware of things, but my kind of brain was not there. And so you would you stay? Yeah, I was just having auras all day long. And so I was just in school, mentally just, I was in the special ed room all day, you know, not understanding what was going on.

Lainie  12:30  
So with aura seizures  can you still communicate with people? It's just something that you feel in your head?

Nat  12:36  
Yeah. I feel drunk all the time. Or I feel like my speech is all slurred or I forget what I'm even talking about or doing or it comes and goes,

Lainie  12:50  
okay. And did they get straight onto it and just flood you with medicine?

Nat  12:54  
Yeah, I was on so many meds that I started growing facial hair. I started. It was the meds were crazy. And they still weren't stopping the seizures. I mean, the seizures are getting worse and worse. And my mom finally went in and said, Look, I don't know if she'll survive another seizure. And that's when they got serious about more meds and trying different meds and we went from doctors in Connecticut, to doctors back at the trauma centre. And I had VNS put in a vagus nerve stimulator, but I tried every Med and either they didn't work or the side effects. I couldn't handle the side effects. 

Lainie  13:36  
So the vagus nerve stimulators put into your chest, and then is your brain operated on as well?

Nat  13:43  
Yeah, so what was put in the chest and then also cut here and tied in there. And it just kind of tickles that your throat or pulls out your throat, and you have the magnet, you can swipe it, if you feel a seizure coming or just and they just kept bumping up the stimulation. And it did it seemed to help. I was able to cut back on the meds. But still, I would just the meds would work for a little while and then I would start having breakthrough seizures again. And so then that med was out. 

Lainie  14:15  
Um, how old were you when this was going on?

Nat  14:17  
So they started when I was 14. That was all that was all of high school. And then I just a year or two ago, did the epilepsy surgery.

Lainie  14:26  
Okay, so between then and now as an adult, did you ever just go I want to there you know there's got to be other ways besides this the medical realm to look after myself and try and avoid the seizures or were you completely just trusting in the system?

Nat  14:45  
I tried like the keto diet, and it helped feel better, but I knew I couldn't like get rid of meds or anything. Because if I even missed a dose of meds, I would have seizures. I don't know about where you are, but we didn't have medical marijuana yet. Obviously we do now, but then we that wasn't an option. So there really wasn't anything else to try. My seizures were bad enough that I, if I tried something that didn't work it, it could have been life or death like it. The seizures were just they were lasting over 10 minutes long, and I wasn't breathing through them.

Lainie  15:29  
Were you going blue?

Nat  15:30  
Yeah, my mom, I was like going blue then go in grey. And she's like, I don't know, she'll make it.

Lainie  15:36  
Well, clearly, you're a survivor. Because you're here, we'll get to the brain surgery in a sec. Do you feel now that you're in control of this because that's the main thing is that you like, for me, it was really important that I take control back of my management and treatment plan instead of just outsourcing it to practitioners that feel that they know what's best for me. Do you feel like you're in control of your treatment, even though, you know, you have to be on medications and things like that. 

Nat  16:04  
I feel in control, for a few reasons. One, the meds seem to be helping mixed with the surgery. And because my doctor is very open to working with me, he's been extremely helpful. I can email him, he emails me right back or calls me or if I say I don't feel comfortable with that he's right with Okay, well, we're not doing it or, you know, it's like, he understands that this isn't just like, his job. It's my life. Like, it's it's very much a team effort.

Lainie  16:37  
Okay, so you had brain surgery to take the part of the brain where the where the seizures would be where the abnormal activity was out? Yes. Wow. You have, you must have so many scars on your skull.

Nat  16:51  
Yeah, well, if I, if I move my hair any way, it's like, it's there's scars everywhere. Yeah, it's just one big loop of scar.

Lainie  17:01  
Did you take photos that time?

Nat  17:03  
Well, I'm constantly shaving my head because of different surgeries. I have a six year old son who's constantly asking me, am I ever gonna have long hair again?

Lainie  17:13  
Hopefully, son, hopefully, maybe you can send me a photo to put up on the Yeah, I have tonnes of them. Oh, yeah. Great. Send me a couple of juicy pictures of your gorgeous skull with a few scars on them. That's always interesting. So do you think that'll be the last operation?

Nat  17:32  
I know, yeah. That the workup was a couple surgeries in itself do you get to have the intracranial EEG and then another surgery to take all those out, and then another surgery to have the actual removal. And so it's quite quite a process. But obviously, well worth it. And I wasn't sure what side effects I would have from losing those parts of the brain. From my initial bleed, I have a left field cut. And that only got a little bit worse with taking out parts of the brain. They weren't sure if I would just be totally blind on one side. And the only thing other thing that I can really get annoyed with sometimes is I don't know the word for it. But like, like counting, I can't look at a room and like count how many people are in it? Or like it's like almost a spatial thing or like a I can't do like practical life skills like that sometimes.

Lainie  18:30  
Can you drive?

Nat  18:31  
I do drive because when I have seizures, I have such a long aura that I I can pull over in time.

Lainie  18:39  
Yeah, fabulous. At least that's one, one freedom and one liberty that you haven't had to give up about any healthy lifestyle choices that you've decided to take on just to now support the brain that is in your head? Because medicines how many different medications are you on now?  and they've found the balance, you haven't had seizures,

Nat  19:02  
Maybe four or five, I still have seizures. It's just not nearly as many. And my seizures used to be extremely painful. I would scream until I passed out. And that was the big goal was like to get take that away and that has seemed  to go away. Because they took away the pain sensory part, I believe. And so I don't have to feel that.

Lainie  19:27  
And do you have the clotting in the brain anymore? Is that fixed? and the comorbidities of anxiety and depression that's being dealt with as well. Is it?

Nat  19:39  
 As far as I know, that's fixed Yeah, through therapy and some medication and I mean, that's that's been going on since I was 14, I think just from trying to figure out my new life and who I am.

Lainie  19:53  
Well, that leads me I guess to one of my final questions for you is that you know the name of this podcast is love your diagnosis would you say that you love your diagnosis?

Nat  20:05  
I truly believe everything happens for a reason. And when I was 14, I, I was that girl you love to hate. And I think for the most part, I can definitely say, having what happened to me, totally changed who I was. I am no longer this stuck up 14 year old girl who walks around like I'm better than you. I walk around, like, wanting to help everyone else. And I believe that this happened to me because I got that I needed to be put in my place.

Lainie  20:42  
Yeah, at 14  like, you know, we're all a bit stuck up our own assess really, you know, on some level,

Nat  20:50  
I love, like showing awareness for my diagnosis. And I love like going to all the walks, I love that kind of thing I love. I love my diagnosis that I have a son because of my diagnosis. I was on so many meds that made birth control ineffective. I mean, I just I believe everything happens for a reason. And so I love my diagnosis because of that.

Lainie  21:17  
Yeah, well getting a son out of it. It's pretty good.

Nat  21:21  
I'm proud of like, when I see awareness, bands or awareness shirts and stuff, like I'm proud to wear them. And I love it that way. Do I wish it didn't happen to me? Sometimes, of course, who doesn't? Who wants to like who wants to have to worry about seizures every day. But it is what it is. And I love being able to say that I'm working on it. And I survived what I did.

Lainie  21:48  
Yeah, beautiful. And it's always a work in progress. You know, people address it in different ways. Yeah, I guess, you know, for me, personally, I'm an advocate of using a, holistic approach to my brain health. So you know, have to be on a little bit of medication, but also I take all these other great stuff that that helps my nervous system and brain outside of it, because that's really important to me, that helps me love my diagnosis more by by looking into different ways where I could take the most minimal amount of medication in your case, you know, it's a big risk and experimenting with your health is a brave risky thing. But it's, you know, it's, it's something that is, is such a personal choice. If, if you had one tip that you could say to people going through what you have or similar to what you have to give them a bit of hope, or give them a bit of guidance, what would it be?

Nat  22:46  
My tip of hope is that it took me 15 years to get where I am at, where I started out having several hundreds of seizures a month, to now just, you know, a couple here and there a month, but it took me 15 years to get where I'm at. And so just because you're struggling right now doesn't mean that you will be like that forever. It's that it takes time to try different things. It takes time to try one thing and see if it works. It's it's a process it's takes forever. And don't give up because it's it is frustrating.

Lainie  23:30  
Yeah, and, and just some, you did say something in there before. As far as guidance goes, just that find a doctor.

Nat  23:39  
If that's so true, I did start with a doctor that we didn't get along. And that was the hardest thing for me. I was only getting sicker and sicker. And when I switched doctors to someone who I really liked, that's when I started improving. But when I had a doctor that we didn't agree I was in the emergency room every week. So that is definitely key.

Lainie  24:04  
Yeah, that's great. And that's a good actual parting gift for someone. So yeah, well it's great that you've still got a little bit of your journey ahead and so much more out there to research and look into and you know you've got obviously got very supportive family behind you, which helps and thank you so much for sharing your story. I don't know if you've done this before but you did it really well

Nat  24:30  
never done it and but I enjoy sharing it for all the people who are going through the same thing and scared to share

Lainie  24:39  
I'll let you know when it comes out and then you can share it on your you can be brave and share it on your socials and things like that.

Nat  24:45  
Awesome. Great. Well, yeah,

Lainie  24:49  
thanks. Thanks very much. Thanks for being part of this and and being brave and being alive. Really, you've done well. He's supposed to be here by the sound of it. Everything happens for a reason. Totally well done Thanks darling Thank you

Transcribed by https://otter.ai