I had a stroke at 43 & didn't know it | Finally getting answers but not the ones I expected ⚕️

[@HeathersHikesAndAdVANtures]

Did you know you could have a stroke in your early 40s and not even know?? In this video I'm catching you up to speed on my life lately... specifically, what I've been up to since being discharged from the hospital a few weeks ago. Its been a litany of doctor's appointments and labs and more weird tests, but I'm finally getting results and answers to a lot of my questions. Im also being fully transparent and laying it all out... im sharing my full list of known diagnoses, and what we still don't know yet. Finally, iI'll let you know what's next on the horizon, and if there's any hope for me to get back to car camping and solo advantures and travels again soon (spoiler, there is!) Information from the experts on central sensitization syndrome: kzbin.info/www/bejne/rHuxmZekiLBmjbMsi=AhuQNEyoArdCdN67 My scariest solo moment - a medical emergency alone on the interstate: kzbin.info/www/bejne/ZnLKpmVoatCbpZYsi=7ZW37ZL4FC7usK7k My ocular migraine incident: kzbin.info/www/bejne/aauleoVjfsaHo7csi=YNXgILuLZKcanoyj ===== My super simple minimal car camping setup details: **As an Amazon Associate, I do earn a small commission for any qualifying purchases made using the links below, but this is at no additional cost to you, and I only recommend the items I personally use and love. Using these links is a great way to support my channel and ensure that I can continue to deliver quality future content, so thank you in advance for your support - I truly appreciate it! Product Links for Indoor & Outdoor Setup/Items Used: Jackery 240 Power Station: amzn.to/3wIiHgX Jackery 1000 Power Station: amzn.to/3lzmMyP Bluetti EB70S Power Station (800W inverter with 716Wh): amzn.to/3nhu0ft Shower bag: amzn.to/39LSDtM cup holder phone stand for watching TV: amzn.to/3Kk6veY disposable female urinals (Travel Jane): amzn.to/3EGHebl string lights: amzn.to/3IxI3oW Luci Light inflatable solar lantern: amzn.to/3YXvJ6U set of mini cooking utensils: amzn.to/3IdBlTD Lunatec pressurized water bottle: amzn.to/3KBgXyX macrame fruit hammock/bag: amzn.to/3lOlwLT Koonie 8" blades rechargeable USB fan with clamp: amzn.to/3lHxBCl cup holder inverter: amzn.to/41bpluz USB mini fan with reading light: amzn.to/3EhsDCE bamboo breakfast tray: amzn.to/3GiXM8Q Hot Logic Mini: amzn.to/3YD1YbV Dash Mini Maker Electric Griddle: amzn.to/413y6qF low wattage (300W) BalBali electric kettle: amzn.to/3YD96EV Aeropress coffee maker: amzn.to/3lLFKG5 handheld battery powered milk frother: amzn.to/3kat7DV mesh window screens: amzn.to/3GiXSxe magnetic window curtains: amzn.to/3G8TqAW metal utility shelf: amzn.to/3wF2tXp trunk storage unit: amzn.to/3wBFNXY Insulated cooler bag: amzn.to/38FK6IG ergonomic gel memory foam seat cushion: amzn.to/3wBLNjg boot scraper: amzn.to/3z1eaJc side slot cup holders: amzn.to/3wC6IS0 hands free phone cup holder stand: amzn.to/3sTLHS1 hands free phone dash mount: amzn.to/3G8Uvsu USB LED light bulb: amzn.to/3yVudZc stained glass "rainbow" decals: - phases of the moon: amzn.to/3WBaxm9 - mandalas: amzn.to/3hJXlfF magic mesh screen doors: amzn.to/41OXq3x mosquito netting: amzn.to/44aPhrU 1.5" memory foam topper: amzn.to/3EfMQZS Luci solar string lights: amzn.to/46mPF6X Mosaic solar lantern: amzn.to/3LDJpjb large storage hamper: amzn.to/3OVtO0S storage bins with bamboo lids: amzn.to/3oCcfbC chargeable hang led color change light amzn.to/41a5IUm

[@GaiaCarney]

Thank You, for sharing your journey @HeathersHikesAndAdVANtures 💝 Your smile is lovely & you have a tenacious spirit ☺️

[@ArmyMadre]

Please remember this is YOUR channel! We appreciate your transparency, don't let the trolls get to you! ❤

[@HeathersHikesAndAdVANtures]

💕💕💕

[@deeplansandbudgets]

By sharing this information, you are helping people understand just how hard it is to navigate our medical system. Unless a person has had an aging parent or some other close person who has had major medical issues, people just do not know how messed up our medical system is and just how hard it is to navigate. You have a platform, and you should share. If they do not want to watch, then they are free to click off. You will get through this and be back in your wonderful van and taking pictures of amazing birds. That time will come even if now it does not seem like it will never get there.

[@HeathersHikesAndAdVANtures]

Thank you for your words. They are so truly appreciated!! That hope, and being able to be a more present and active parent again, are my main motivators to keep going, so hopefully there's finally light at the end of the tunnel!

[@MrsRubens]

I really appreciate you sharing your journey! I have Long Covid, with POTS, brain fog and joint pain, which is a subtype often associated with autoimmune disorders. I have Hashimoto’s thyroiditis. As I read the description of this video, the mention of “central sensitization syndrome” made all the bells go off in my brain and I actually watched the video from the Mayo Clinic before watching yours. It was so helpful! Even though my health issues aren’t the same as yours, hearing your story is so relatable for me. Best of luck with your journey going forward! I think you have a very good sense of what to share and what not to share. I’m sending you lots of positive thoughts! Oh, PS, your voice sounded much more relaxed when you were in your car than when you were on the couch. You sounded more relaxed and in your body.

[@HeathersHikesAndAdVANtures]

That video from Mayo was like that for me, it was as if he was describing me specifically!! Thank you my friend! Hoping you get some relief soon!

[@missroxanne7123]

Sounds like you are making lots of progress and finally getting the help you deserve. And if anybody doesn’t like your voice they can just buzz off or F off or anything of that nature. ❤

[@HeathersHikesAndAdVANtures]

Thank you, I appreciate you!! 💕

[@terrilane2973]

You are helping people understand. I have had chronic widespread pain for years. Yes I look fine, I'm smiling people think I'm fine. If they had my pain level they would be in bed. So sorry you are going through this. Prayers for you sweetie, I always enjoy seeing you.

[@HeathersHikesAndAdVANtures]

It's tough when you look "normal" or "healthy" outwardly. I think it's partly why it took so look for my primary doctor to take me really seriously in the beginning!

[@ManifestingMimi]

Hello Heather, I am so sorry that you are going through these health challenges. I am keeping you in my prayers. My mom suffered from polymyositis, fibromyalgia, fibro rheumatica, lupus for many years but recent tests are not showing any of these diseases but she will have a biopsy to confirm. Many of the tests that you have described she has had as well. In Feb 2024 I received a diagnosis of transverse myelitis-I also had to have a lumbar puncture, lung function test. I greatly appreciate you sharing your experiences because I can relate to some of the challenges that you have been facing. Don't listen to the negativity of those in the comments, continue to share your story as it helps me be specific in my prayers for you. Take care and God bless you 🙏🏽

[@HeathersHikesAndAdVANtures]

Thank you so much! I'm sorry to hear of the struggles you and your mother have had to deal with, though! Hopefully you are both doing better soon!

[@ChrisW228]

Chronic migraines can mess up a lot. I have been diagnosed with atypical migraines… I don’t have any pain, so I don’t even know I’m having them. (People use migraine and headache interchangeably, but apparently a migraine isn’t the headache itself… it’s a vascular change that can cause a specific kind of headache, but doesn’t always. The headache isn’t the migraine. The migraine causes a headache.) It started out when they thought I had a stroke.. I passed out and came to groggy with trouble speaking and using my arms and legs. After inpatient rehab and a barrage of tests at two different hospitals, including an epilepsy study, they found three “white spots” on my brain. They told me the same thing they told you; chronic migraines or MS. They have since ruled out MS. Long story short, at some point I had such bad migraines (with no pain) that the affected vessels never fully expanded again, hence the white spots. Now when I get migraines in those same spots, my brain thinks I’m lacking oxygen, and I pass out/have a seizure, depending which doctor you ask. Since two of these spots are in the area that controls motor skills, it can sometimes take days or weeks to fully regain use of my legs. I used to need a wheelchair and then walker after these episode quite frequently, but the older I get, the less it happens. I now know the feeling right before it’s about to happen and if I lie down very quickly, I can prevent it. After trying and hating different migraine meds, a fantastic neuro suggested Effexor (anti anxiety med) off label. Apparently, the compounds that soothe anxiety also calm the nerve synapses that cause my type of migraine. So even though I’ve never had nor been diagnosed with any kind of anxiety, as long as I take my Effexor at exactly the same time every day, I do very, very well. It may worth asking your doc about, Heather.

[@HeathersHikesAndAdVANtures]

Thank you so much for sharing your story! It's scary how similar it sounds to my experience! I have started a medication to prevent migraines that *knock on wood* seems to be helping now! I do have another prescription they gave me for if I still end up getting one (as needed) but I haven't had to take one in well over a week!!

[@helenholmstrom5623]

Heather, you are a super brave young woman! I am happy your mom was with you at Mayos. 🙏

[@HeathersHikesAndAdVANtures]

Thank you!

[@annaroberts3976]

Thank you for bringing us up to date. I don't really have the vocabulary to express how sorry I am that you are going through all of this. It truly hurts my heart. But you are doing such a good service to all of us who unfortunately suffer with multiple health issues. You are bringing our struggles out into the open. Navigating the medical system can be an absolute nightmare. And I am always happy when I hear someone talk about how especially difficult invisible illnesses can be. Chronic illness is so very difficult to handle, but when those illnesses are invisible a whole another layer of complexity is added. I truly thank you for pointing that out. It sounds like Mayo clinic is really going to be helping you. The 3-week program sounds fantastic. I continue to send prayers and positive thoughts your way. Do your best... That's all anyone can do 💙

[@HeathersHikesAndAdVANtures]

Thank you Anna! Our Healthcare system really is a nightmare. There is so much waiting just to be seen, and then once you are it's a race to how quickly they can get you out the door typically! And you have to fight so hard to advocate for yourself, even when it feels like nobody is listening! I know you understand this all too well though. Hugs!

[@kirstenstrobel4387]

Wow! Hurricane Helene roared through FL, and now there is Hurricane Heather! Girl, you have been through it all. Getting answers is always a good thing. I’m glad you have confidence that Mayo is moving you in the right direction. The 3-week program sounds like it will help in ways that just going to a zillion appointments might not cover. When multiple things strike at the same time, it’s so hard to get answers. So glad you are sounding more upbeat!

[@HeathersHikesAndAdVANtures]

Yes, I'm really looking forward to finally finding something that has a good chance of helping, and even better that it's not just more pills to take! It's so tough when each specialty is only addressing "their" symptoms, knowing that everything is connected. Hopefully this will be the thing that turns stuff around for me finally! Now I just have to wait & keep from getting any worse in the meantime lol!

[@SheTookTheLongWayHome]

Oh, sweetheart, I am sending you the biggest hugs! Don't even get me started on the lack of care in the so-called healthcare system! I don't have enough hands or fingers to count the number of times I've needed to knock heads together to get people to do their damn jobs. It's absolutely maddening. And those people who think all this needs to be kept to yourself? The gall. It's not up to them; it's YOUR choice. Also, I totally relate about having a sort of hidden disability. I've been navigating caregivers PTSD after caring for my dad for 10 years before he passed. I might look normal, but my brain was literally broken for over two years. I am MUCH better than I was, but still not 100%, and people just don't understand how I could be having a hard time when I seem normal (seem being the operative word). Anyway, I'm so glad they are finally getting all these tests rolling for you so you can get some answers and a tx plan going. Rooting for you, girl!

[@HeathersHikesAndAdVANtures]

You are so spot on about the Healthcare system, and the stigma that comes with "looking normal". I definitely adds an expiration component of frustration to the process. Glad to hear you are doing better now. Hugs!!

[@RLeeVanCamps]

Sorry for all the issues. I personally know numerous people diagnosed with POTS since COVID and the shots. Not sure if there is a connection. My son is familiar with the esophageal tests you speak of. He gets his stretched every 6 months due to radiation for his cancer. The elasticity is gone. Hope you keep getting more answers. 😊

[@HeathersHikesAndAdVANtures]

That sounds tough for your son, wishing him the best! It does seem like autoimmune issues & more chronic illnesses have sprung up since then, so who knows!? It certainly seems possible that there's some sort of connection somehow

[@janeensharbono9715]

I'm so sorry you are going through this. It sounds absolutely terrifying. I have a couple of chronic illnesses that I've dealt with for a very long time myself and so I know the exhausting process of trying to get treated for it. It is nice of you to share it. It does good for you and it also could help other people watching it. As far as your voice goes, don't apologize for that. If people don't like it, they shouldn't have the privilege of watching your channel. Thanks for posting and stay strong. Sending healing energy your way.

[@HeathersHikesAndAdVANtures]

Thank you for your kindness & support! Thanks for sharing your own story!

[@missroxanne7123]

I just have to give you kudos on your ability to explain everything so we can understand it. You do an excellent job. Your communication skills are top notch. Thank you so much I really appreciate it. Prayers for a new adventure really soon ❤

[@HeathersHikesAndAdVANtures]

Thank you, that means a lot!!

[@lyndakelly7224]

​@@HeathersHikesAndAdVANturesI totally agree. I see a speaking career someday in the future. You would inspire and help so many.

[@juliehoot3916]

Hi Heather, this all sounds wonderful. Excited and hope program starts soon. 🙏👍💪

[@HeathersHikesAndAdVANtures]

I still have a little over a month to wait unfortunately, but I have some other tests and things that need taken care of first that are already scheduled, to make sure none of those issues need addressed first! But even having it on the schedule is a weight off my shoulders right now!! 💚

[@fondatruelove2330]

So glad you got some answers I'll be praying for you

[@HeathersHikesAndAdVANtures]

Thank you, I appreciate it! It's nice to at least have an explanation for what's happening in my body these instances...makes it less scary at least. And feel more doable to actually take on and overcome 🤞🤞

[@fondatruelove2330]

@@HeathersHikesAndAdVANtures 🙏❤️

[@ritacolombani714]

Hi Heather, oh my goodness that's a lot for you to take in but I think doing the program is a good way to help with all your conditions & symptoms, wishing you all the best & hopefully you can soon be back to enjoying new adventures with your van. Take care 🤗🇦🇺

[@HeathersHikesAndAdVANtures]

Thank you! Really hoping to be back out there soon!

[@William2N]

Prayers always!

[@HeathersHikesAndAdVANtures]

Thank you!

[@jamnorge]

Keep your head up!!! Keep going strong.

[@HeathersHikesAndAdVANtures]

I appreciate it!!

[@curtisdettra5194]

Hi Heather 👋. Spoiler. I know you'll be back. I just know buy watchin your videos and following you. You are a strong Floridian Gator(woman). I'm praying for Gator🐊. Soo. Lator Gator and get well soon.❤👋

[@HeathersHikesAndAdVANtures]

Thank you Curtis!! I appreciate that, I really am hoping I can start getting back out in nature soon now with this new treatment plan on the horizon!! 🤞🤞🤞

[@ladyd6772]

Thanks for being you Heather! Keeping you in my prayers girl

[@HeathersHikesAndAdVANtures]

Thank you so much!

[@-miekeb-]

Good to hear you are now getting into the stage of solutions!! 🎉💜

[@HeathersHikesAndAdVANtures]

💕💕

[@ramonapuckett3059]

Oh goodness, Heather! The program sounds so beneficial for you! I’m praying for you and the medical community to come up with solutions. And your family 🙏🏼🩷

[@HeathersHikesAndAdVANtures]

Thank you so much!! 💕💕

[@Vangela1]

TSH is actually from your pituitary glad. I’m so glad you’ve gotten some answers finally.

[@HeathersHikesAndAdVANtures]

Thank you for clarifying that!

[@ashleyhum22]

Thank you so much for continuing to share your story Heather. Anyone telling you that you’re over-sharing & this should be private is being RIDICULOUS. It helps others to 1. Understand and empathize with others who have invisible diseases and 2. May help someone else find resources to help lead to their own diagnoses. Keep Going Lady!

[@HeathersHikesAndAdVANtures]

Thank you so much, I appreciate you!!

[@Michelle-bw1xg]

Been thinking of you lately, thanks for sharing your health updates. With all you're facing you did a very eloquent job sharing it all. I'm glad you have such good explanation of your medical conditions. Mayo sounds amazing so far and the 3 week comprehensive program sounds like such a great opportunity. Prayers & good wishes!!

[@HeathersHikesAndAdVANtures]

Thank you so much, I really do feel like it's gonna be a game changer!!

[@jenxu2]

I appreciate you sharing this information. I'm praying for you too get better 🙏🙏🙏 you are amazingly strong to deal with this and share what you are feeling.

[@HeathersHikesAndAdVANtures]

Thank you so much, that means a lot!

[@silliesallie302]

Chronic pain 35 years. Have learned to do what I can when I can. Not anything as complicated as you. Best to be kind to yourself no matter what.

[@HeathersHikesAndAdVANtures]

35 years of pain is pretty awful to have to endure, I'm so sorry to hear that. Hugs!

[@juliarushing1920]

Take good care of yourself. I hope you get the answers and the help you need. Trust your gut. I think that MRI doctor should have let you take that break.

[@HeathersHikesAndAdVANtures]

Thank you! (And I really wish he would have. I'm sure if he knew it would end up taking longer without giving me a few extra moments, he would have!

[@cindyjohnston3134]

((huge hugs)) your a strong woman...stay postitive :)

[@HeathersHikesAndAdVANtures]

Thank you so much! 💚

[@Kimbers58]

Oh Heather! I'm back and watching n will get caught up girl❤ Alot goin on in my life too. I'm still Praying for you my friend. Ok bk to watching ❤🙋‍♀️

[@HeathersHikesAndAdVANtures]

Thank you my friend!

[@Kimbers58]

@@HeathersHikesAndAdVANtures ❤🙋‍♀️❤

[@WanderingWithWanda]

Wow Heather, bless you for enduring all of that! You sure are learning a lot though. I dont know how youre remembering all of that and brave for sharing, I commend you for being transparent and possibly helping others that may be going through something similar. I dont see anything wrong with sharing medical information at all! Quite the contrary. I commend you for putting yourself out there. I have severe panic attacks as well as other things, Im on medication now but I understand people who judge and cant comprehend an unseen medical issue. I'm so proud of you friend. Hang in there! 🤗❤️‍🩹

[@HeathersHikesAndAdVANtures]

Thank you so much, that means a lot. I do hope some of my experience can help others not waste quite as much time waiting. This process is such a nightmare to try and navigate - especially when you're way less than 100% lol!

[@TurtleMyrtle12]

Hi, Heather! This video was published on Friday and I had lost power Friday morning from Hurricane Helene and just got it back now SO I'm able to watch this and catch up. How have you been since Helene? Did it miss your town? You always have a smile on your face even as you face all this. You're incredible! I hope you schedule some vanlife meetups in the future so I can meet Wonder Woman in person! 😃

[@HeathersHikesAndAdVANtures]

Hoping you avoided any other damages aside from power outages 💚💚 We were very lucky here. I am a little nervous about all the rain predicted for our state this next week, since so many areas are still saturated, bit hopefully we are in for cooler, drier weather soon! 💚

[@suzyashby8777]

I hope you get feeling better. I’ve been feeling these symptoms too. I’ve seen my Neuro I may ask for a second opinion. I’m so sorry I will continue to pray for you. ❤❤❤❤

[@HeathersHikesAndAdVANtures]

Thank you! I'm so sorry you're going through similar issues. It's so frustrating! I think part of þhe challenge is that each specialty only focuses on the issues related to their specialty, when in reality a lot of times these more complicated chronic issues involve multiple systems! It seems like a lot gets missed initially that way in my experience so far. Hoping you're able to get some good answers soon! (Check out the video from Mayo in the description if you havent..that was really eye opening for me!!)

[@abdullahbabkhan2401]

Get well soon Dear

[@HeathersHikesAndAdVANtures]

Thank you so much!

[@BonnieMartin-s7s]

Prayers continue things are g I nna get better. Fybromyalgia sucks I know I have it. But it is controlled good luck

[@HeathersHikesAndAdVANtures]

I'm so glad yours is well managed now! Thank you!!

[@vkessler56]

Oh my! I was petrified at spinal!!! Too young😢 Hope you get back to living well soon!!!

[@HeathersHikesAndAdVANtures]

It was definitely scary!!

[@Bakr6432]

I wish I could be there to help you get through this difficult time.

[@HeathersHikesAndAdVANtures]

💕

[@lyndakelly7224]

Very wise to use these videos as documentation for your future self. This might also help your children in the future. A legacy. My heart breaks for you. Ignore the wisdomLESS.❤ Edit. I tried to contribute through the gofundme link but it would not accept PayPal. I'll figure out another way.

[@HeathersHikesAndAdVANtures]

Thank you so much for your kindness! I admit I don't know much about the particulars of gofundme (im still so new to all this), but just watching my videos and supporting me that way is so appreciated! 💕💕

[@TanyaDavis954]

Wow 😮 thank God your ok

[@HeathersHikesAndAdVANtures]

Thank you so much, it's been an unsettling (and scary) few months! 💕

[@chelbylynn3999]

You did well putting your diagnosis in layman's terms. POTS is horrible. Also could be ntracranial Hypertension ... I have POTS, Intracranial Hypertension , AND hypermobile Ehlers Danlos Syndrome. All of these have a snowball effect. Over time you will become more aware of your triggers and can cut some of your symptoms off at the pass.....or at least dampen the effects of your symptoms. Gentle hugs to you .

[@HeathersHikesAndAdVANtures]

So sorry you hear of your list of diagnoses. They never seem to travel alone, these autoimmune and chronic illness, do they?? It can be so frustrating! Wishing you continued progress on your healing journey 💚💚

[@chelbylynn3999]

@@HeathersHikesAndAdVANtures thank you and you are right, they seem to never travel alone.

[@twinkles2150]

The air thing you described sounded like it’s for Cystic Fibrosis patients…I wish we had a Mayo Clinic..

[@hsoderberg6505]

Given the high likelihood that you had a stroke, have they recommended that you have rehabilitation? Given the medical evidence you now have, hopefully should help you in applying for disability. Don't be afraid to ask for what you need.

[@HeathersHikesAndAdVANtures]

Hopefully! I still think it will be a lengthy process, but I definitely plan to start the application process either way, if my testing this month doesn't turn up anything else with it.

[@cjmajor9598]

Just curious if you had any covid vaccines.

[@HeathersHikesAndAdVANtures]

I had the initial one and then the 1st booster, but not since then. I did get Covid for the 1st time last August as well.

[@twinkles2150]

Sucks you have a list of crap going on inside, but I’m curious…. IF You do Not have a Thyroid…… Where is the surgical scar ? Mom doesn’t have hers and she has a scar from where they removed it. I zoomed in and I don’t see it….. I wish they would hurry up and find cures for all this ! Hugs 🤗

[@HeathersHikesAndAdVANtures]

This makes me so happy that it's not noticeable anymore! I started using mederna for scarring as soon as it was closed up, and my surgeon did a great job! I do wish I would have massaged the area more once healed though - I think I have some internal scar tissue that irritates me now

[@twinkles2150]

@@HeathersHikesAndAdVANtures ooooooooooh well least something works!!!! And yeah I couldn’t find it lol 🤗

[@ladonna3659]

Curious did you have the vaccines? If so, I would recommend a detox to get yourself clean of those toxins present in those shots.

[@HeathersHikesAndAdVANtures]

I had the initial one and the booster, but I also got Covid for the first time in August 2023 as well.

[@virginiawedell9715]

Wow, Heather. You have had every test imaginable and been through so much this year. I knew Mayo would be a good thing for you because they are simply the best at what they do. I’m happy that you’re going to do the 3 week thing, and learn how best to manage your issues. I sincerely believe that you have gotten yourself to the best place possible for you, and I commend you for your dedication to finding answers. You have done a magnificent job in keeping your head on straight. A lot of people in your position would have just given up by now. You are stronger than you think and your optimism about going forward is a good thing. I admire the strength and courage you have shown and I wish you all of the best. 💙🩵💚

[@HeathersHikesAndAdVANtures]

Thank you, truly! I think if it wasn't for my kids I probably would have given up months ago. But it finally feels I might be close to a turning point soon!!