My POTS Story | First symptoms & Diagnosis

My life took a complete 180 in 2019 when I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome). There was a long period of time when things looked pretty grim for me, a lot of bad days. But, as I'm typing this, I'm in a better period of life. Things are starting to look a little different, a little better. No, my POTS has not disappeared. Yes, I still have bad days, but I have good days too.
I believe that everything that happens in life happens for a reason. That these past few years have been a season of preparation. I don't know what I'm being prepared for exactly, but one day I will. For now, I'm just leaning into it and trying to learn and grow through it all, so that when that time comes I'm ready.
I'll be sharing many more videos through the coming year showing the ups and downs that I have faced. My hope is to let you know that:
1. You are not alone.
2. It's okay and NORMAL to struggle.
3. Things are only embarrassing if you let them be.
4. Your "best" will be different everyday.
5. Bad periods don't last forever. (even if they feel like they will)
So, I'm going to press upload now, before I talk myself out of it....

[@MilouAT]

Thanks so much for sharing this story, Jenni. I want to hug you through the screen! I have been sick for 2,5 years now, thinking I had a really bad burn-out, but it was so severe that my therapist thought there must be something else too. I recently found out I’ve got Post-COVID and PEM, and am now expecting to have POTS too. I am on a waiting list for months, but I tried to do the selftest several times as good as possible and it seems to be so. Thank you so much for your story again and I’m so glad you feel better now. For you of course, and also because it gives me hope, like the words of encouragement in the comments. Sending health and love to you and all who read this ❤

[@baileywilson1448]

You're clearly super talented and you have so much life in you and in front of you even when it doesn't feel like it

[@e.williams13]

Also I know it's difficult but you have to walk. Start out with 5 minutes a day and then increase. You may have to have someone walk with you but exercise will help regulate your nervous system. Youre autonomic nervous system is dysregulated... The more you are immobile it makes it worse it seems.

[@dreweastw]

incredible how the symptoms you describe and emotions are the same as my experience. To get the diagnosis is a relief in itself, and one day at a time after that for a while.

[@NeverHopelessbyElizabeth]

Thank you so much for sharing. I am so sorry that you are going through this. I know the struggle, I have had POTS for 14 years now, I’m 54. My daughter is 27 and was diagnosed at 16. We don’t faint, but we do get adrenaline dumps, with similar symptoms to what you call your attacks. Things will get better! I encourage you to keep searching and finding those doctors that have knowledge and understanding of POTS. I was treated successfully by my GP for 12 years, then I moved. I am now back again on the hunt for a doctor that treats POTS. BE WELL 🕊

[@jenniscollection]

Thank you! Im still searching, slowly making improvements here and there! I wish you and your daughter luck:)

[@Dulcimerist]

I have hyperadrenergic POTS as well. The adrenaline dumps are annoying. They generally treat that with the alpha-2 blockers Guanfacine or Clonidine. That type of medication has been a huge help for me.

[@00SeanWest]

Yup, I was diagnosed 6m after I got the Covid Vaccine. I had to give up my boxing career. POTS sucks but hang in there.. I went through everything you said and it can get better.

[@rcola25jr71]

I appreciate you sharing your experience. I’ve been suffering for 2 1/2 yrs with serious health issues. I used to be a marathon runner and now I’m bed ridden for most of the day. Within the past weeks I was finally diagnosed with PoTs and just now starting the long path to recovery. Suffering daily isn’t easy and I thank you for sharing your story. God Bless

[@jenniscollection]

It can be so hard, but it does get easier with time. Still working on finding what works best, don’t give up!

[@rcola25jr71]

@@jenniscollection Thank You

[@e.williams13]

Hey sweetie! I know exactly what you are going through. I went through the same thing. I am about 75% better. I still struggle with a little fatigue but I am able to work from home full time now. I started brain retraining. As weird as it may sound someone mentioned it to me and I looked into it because medications did not help much and I felt like my life was passing before my eyes. There are different ones but the one I am doing right now is called wired for wellness. You can also look into people with pots here on KZbin that have tried this and are doing a lot better. Please try this with an open mind and do not let anyone tell you that it cannot get better or be healed because it can. The doctors can only do so much for you and honestly it's not too much. Take care❤

[@vocalsbymohsin]

Hi. Pls guide me , how you good better ?

[@jenniscollection]

I do lots of meditation and brain work. It does have its benefits, especially if you’re stressed. Constantly looking at new research and seeing what makes a difference. I plan on figuring this all out no matter how long it takes. I’m happy to hear you have had great improvements in your health. Thank you for sharing:)

[@paulcasey796]

Thank for educating us about Pots my nice had it.

[@josiedoe7935]

Thanks for posting your story. I just recently learned of Pots but do not have a diagnosis. I do have hashimotos, and PMR and all the symptoms of Pots. I have no idea where to start my search for help. Prayers to you and hope you are finding help.

[@user-cx7rz4rw2y]

I spell my name like that, too! I am currently waiting on diagnosis.

[@denisesmith7627]

Love you Jenni, great job on this video. Surely will help others❤❤❤❤

[@michellemurphy4150]

Good luck. I wish you well and will keep you in my prayers.

[@melrosewrites]

Thank you for sharing, this really has helped me feel like im not alone

[@jenniscollection]

You’re not! I see you!:)

[@suzyhomemaker9918]

Thank you for sharing your story. We need more stories out there. My daughter started having symptoms in 9 th grade. If we had heard stories like this back then ,then maybe she would be further in her recovery now. We went trough 10 years of doctors calling it anxiety or saying there was nothing wrong. 3 years ago she was so sick she had to move back home and was house bound. That’s when we stoped letting doctors tell us there was nothing wrong and finally got the pot’s diagnosis. And that was only after I saw a story on you tube about girls with pots that describe her symptoms exactly. We then went to a new doctor and asked to be tested for pots. She much better but still has a ways to go. I am researching recovery stories now to find the next steps to take. I don’t know where you are in your journey now but keep working at getting better . Recovery is possible.

[@vocalsbymohsin]

I need recovery methods' this shit is now affecting my life.

[@jenniscollection]

Thank you so much for sharing. I am slowly improving and plan to continue sharing what works and digging through research. I pray that your daughter is doing well and continuing to improve!

[@invictuse8865]

Thank you for sharing your journey. I know what it’s like to struggle with illness, it’s never easy. And I know how hard it can be to be open about it. But thank you for finding the courage to speak about it here. I’m always curious to learn about health conditions that are very important, but not talked about enough. I hope I can learn more about POTS so I can help patients with this condition improve their daily lives after I graduate college. Please continue to share your story and educate more people about this condition. I hope a cure is found in the future, I understand how hard it can be to live through.

[@invictuse8865]

If you’re wondering about which illness I suffer from, I’ll share it here. The mental health conditions I suffer from are OCD, anxiety, seasonal depression, and panic disorder. My OCD started to heavily affect me when I was 13 years old, about 6 years ago. It was based around religion at this time, but was centered around contamination when I was a kid. These days, it mainly focuses around health conditions. I wondered if I had POTS for a long time, but I don’t think I have this condition. My anxiety is coupled with my OCD, but it also advanced into a panic disorder last summer. I even had my first panic attack in the course that caused all the stress, it was an EMT course. It’s a pretty good place to have a panic attack, especially when you’re not sure what’s going on lol. And my depression has been pretty light, only happening based on bad circumstances like this or during winter. I hope that this helps you not feel so alone in struggling with health. Everyone in the world will have to suffer through their own conditions someday. But fortunately for them, it won’t happen until they’re older. I know how hard it can be to go through tough times like this at a young age. The last 6 months have been extremely hard on me. But I know that it will get better. You will find your way. Don’t give up hope on your future. You can never control the cards you’re dealt, but you can choose how to play them. Please keep fighting this and see it through, no matter how hard it gets. I believe you can do it.

[@jenniscollection]

I’m sorry that you are going through that! I hope that you are able to find things that help. Trial and error, just keep going:)

[@Dulcimerist]

I have POTS from having Ehlers Danlos syndrome. Specifically, I have hyperadrenergic POTS, the kind that has adrenaline surges, so my symptoms are managed with Guanfacine or Clonidine. I also wear compression calf sleeves like marathon runners wear, and during the hot summer months I get saline infusions when needed.

[@becky6598]

Hi Jenni, I developed POTS between April and June 2022, and I hope my story can help you (I am about 90% recovered now). Similar to you, I first noticed my blood pressure dropping and feeling a bit dizzy (although I never passed out). I had recently been diagnosed with fibroids, and had needed a transfusion due to very low hemoglobin, but the POTS symptoms seemed to come on as a reaction to a medication called Lupron that they prescribed for the fibroids. Lupron shuts down your hormones. Each time I would get a Lupron shot. I would have dizzy, spells and low blood pressure for a day or two. The third time I noticed that my pulse went up every time I stood up and that time it didn’t go away the next day. POTS has a high correlation among women, both very young and those approaching menopause. This indicates a hormonal component. Like you I was bedridden, in my case for about six months. I had other symptoms in the beginning, chronic fatigue, digestive problems, nausea, headaches, feeling, off-balance, brain fog. And then probably forgetting a few. Like you, the doctors didn’t have very much to offer. I wasn’t willing to accept that it couldn’t be treated though. So I did a lot of research looking on KZbin for people who had recovered from POTS. @e.williams13 is correct: POTS is a symptom of disregulation of the autonomic nervous system - the part of your nervous system that controls all the automatic functions of your body, (as were all of my other symptoms). The broader term for this is dysautonomia. The good thing is, you can correct this problem and bring your autonomic nervous system back into regulation. For many people brain retraining programs are all they need. I tried DNRS (online), and while it wasn’t enough for me, just hearing the testimonies from people who had recovered was helpful, because the knowledge that you can get better is essential to relaxing your autonomic nervous system so it can come back into regulation. (dysautonomia is not the same thing as anxiety, although it can cause you to feel anxiety. It’s a real physiological problem, and can affect any of your systems, so different people can experience different types of symptoms.) In my research, I kept finding testimonies from people who were treated by functional neurologists (sometimes also called chiropractic neurologists). so I looked for one in my area and started a treatment program there. About four months later, I no longer had POTS, I was able to drive, and I only lay down when it was time to go to bed. Now I can work full-time and do all the normal activities I used to do. I still technically have a little dysautonomia, mostly in the form of mild balance problems, but I expect this to continue to improve, and eventually go away. My treatment involved noninvasive nerve stimulation, Red laser light therapy for my headaches, various balance, coordination, and cognition games, hyperbaric oxygen therapy, tilt table therapy (carefully monitored starting with mild angles and pressurized boots, not like the tilt table tests), and changes to my diet and supplements to support brain and hormone health and replenish nutrients that were low. I saw a significant improvement in my symptoms during this time, while visiting my parents for three weeks, when I forced myself to sleep 10 to 12 hours per day. I had had poor sleep for a long time before that, and for me improvement in sleep helped my nervous system rebalance a great deal. Dr. Nathan Keiser (who happens to be in Michigan) is a chiropractic neurologist, and he has a great KZbin channel where he describes, and explains dysautonomia, and other conditions he treats, and the treatments he uses to help people get better, often very quickly. I recommend you look at his KZbin channel (www.youtube.com/@dockeiser) and his webpage (www.drkeiser.com). If you can find a clinic like his in Texas, then I would suggest to do a consultation with them. If not, I would suggest to travel to one like Dr. Keiser’s. Heads up, standard medical doctors are generally not trained in or knowledgeable about functional neurology, nor is it covered by most insurance plans. However, it is worth the money if you have to pay for it on your own, because it will truly return your health to you, which standard medicine cannot do. Since I lost my job during my illness, my sister raised funds on GiveSendGo for my treatment, which was around $7000. I never took medications or massive amounts of salt, and I only wore compression socks for a short time. Do not give up, you can, and will fully recover, either with brain retraining or functional neurology, or a little bit of both. You are in my prayers and I wish you all the best.

[@vocalsbymohsin]

I need your help.

[@user-ip1oj6js1t]

I also have PoTS. One thing that has helped I am going to respiratory therapy and have started wearing compression hose when standing on my feet. I wear knee high. Compression socks when sitting. I don’t wear them when sleeping. I have what I call zombies, I have to move and it is like I have an adrenaline rush that can last for hours. Light bothers me. Too much sound bothers me, I have brain fog and have to use a shower chair. I have been to every specialist and test but no Dr has actually diagnosed me. Now I am drinking a lot of water. I do drink 70oz of water a day as recommended. I have lost a lot of weight. I used to sleep all the time and felt week and dizzy when standing, I still get dizzy at times and don’t drive. I take electrolytes. I live in OK at I have basically helped myself thru research. I have been to a neurologist had brain scan, cardiologist had ekg, treadmill test, cat scans, mri’s, my cardiologist took me off of blood pressure pills. I have had my hair fall out and cut it off. My dermatologist prescribed rogain and a prescription to help my hair grow back. My g.i. Doctor prescribed something for my nausea and reflex after a colonoscopy. I feel like I am being dismissed. This has been going on for 2 yrs. My husband has had to do everything. But I will say compression hose & respiratory therapy had been the best help. I still am not right. The pulmonary Dr. Checked me for cOPD and asthma tests show I don’t have either. I am very short of breath with any exertion. And if it is really bad, I vomit or have diarrhea. Although that is a lot better since I started respiratory therapy. I have search for help and someone that know what to do to help me with no luck. Carolyn

[@xoxomoniqua]

Have you lost a lot of weight due to not being able to eat?

[@jenniscollection]

Hi, Carolyn! I’m sorry to hear about your journey with POTS. I know how hard it is, no one should have to go through it. I too have found more information from my own research than I have from Doctors. Here are some things that have helped me (please note they will effect everyone differently); Increased protein intake, water but not to much-you don’t want to be washing out all the nutrients in your system, in the beginning I was drinking way to much. Rosemary oil and hair masks to help regrow your hair. IB guard for G.I issues and nausea, peppermint oil for body pain(feels like icy hot). Exercise but not too much. Also I recently learned about B1 and its effect on POTS, so I would suggest looking into it! I’m only about a week in so I can’t say definitively whether it’s helping or not. And I am looking to start physical or respiratory therapy soon. I hope some of this helps. Know that I’m continuing to do research and will share anything that I find that aids in recovery. We got this, don’t give up!

[@tomandchandler1]

Have you looked into MCAS?

[@allthingsmaloney5634]

I got Dx in October and had tons of symptoms as well. They thought seizures or MS initially. Thankfully it’s “just” POTS. I got meds and I’m 90% back to normal I’d say. I hope I can stop meds one day but probably not. I take propranolol 20mg twice a day. It took 3 weeks to start working. I went from 6 minutes to 1.5 hours on a treadmill. It was exhausting to get here.

[@keteedevil]

did you experience side effects from the meds?

[@vocalsbymohsin]

You are a hero.

[@Dulcimerist]

Glad Propranolol worked for you. I had adverse reactions to beta blockers, but thankfully there's a wide array of different types of medications that can treat POTS. It's just a matter of finding the right one, since not everyone reacts the same to each medication.

[@summerknabe2560]

I have a question if anyone knows. I have all the symptoms of pots except low blood pressure and my heart rate goes up by 50 when I stand up but it doesn't stay up. It goes back down to 80 in a matter of a few seconds and then slowly creeps back up. Is there a limit on how long it has to stay up??

[@cjjames83]

im sort of in the same situation.. im curious did you get vacinated with the covid vaccine and also did you travel out of the country prior to fainting the very first time.... reason im asking is have you looked into you gut Health... i strongly advise that you get tested for GI issues such as H pylori or any bacteria over growth in your stomach... which normally trigger your system to go out of wack.also what is your diet like and have you check your histamine level.. because thats critical....im my case everyhting that happen to you already happen to me.. but im real stubborn and im getting to the bottom of it..... i saw major improvement with a low histamine diet. taking supplements not medications... vit D k2, CoQ10, vit C ,, B complex digestive enzymes a magnesium and good pro biotic and well as bromyl sodium and drink plenty of electrolytes and water... im seeing improvements...

[@jenniscollection]

I’ve never been out of the country and this all happened before covid and vaccines exploded. My gut was one of the first places I checked, as I have always had issues with it. I also have intense hormone studies done. I am also stubborn so I will not be giving up. I take vitamin d+k2 , a B-complex, as well as recently adding B1 on top. Exercise and higher protein intake has helped a bit as well. But I’m will continue to research and test until I figure it out. Wishing you Luck!

[@spikygreen]

Hi Jenni, does your blurred vision improve when you lie down?

[@jenniscollection]

Hi, generally, yes. But it honestly depends on how bad my symptoms are at that point.

[@BasicBeachCommunity1]

geeze. awful .my wife has similar