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Jenni, thank you for sharing your journey with us! Love that you write and are creative. Last year was rear ended and started to have symptoms which I thought was just migraine. I love theatre and VO classes and was supposed to perform earlier this year but I had flare ups and I couldn’t. I have POTS symptoms and have yet to be diagnosed when I see autonomic specialist in a few months. I’m still hanging in there. I’ve had presyncope episodes (feel like going to pass out) while at work, driving and at home. The light sensitivity to digital devices and light in general, under eye twitching, heat and exercise intolerance, bed rest, unable to drive or cook, fatigue, shortness of breath, can’t walk as fast, or stand for too long, brain fog and speech difficulties at times. I was taken to ER twice in one month and blood work was fine and sent home but I still wasn’t fine. I would even feel at times like was dying because of the awful pain. My faith in God helps me and I also like to write. I’m learning to be grateful more than ever. Doing my own research in the meantime has helped me listening to podcast The Standing Up To POTScast with POTS patients and professionals speaking about this topic. Sending you lots of love and God Bless🙏🏼

Beautiful writing and voice 💖💖💖

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??

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 <3 I hope you are able to work with a mental health therapist to bring you meaning and a pathway forward. I don't have pots, but I related to losing your freedom to be mobile and "productive" and that can really spiral anyone into depression and its long term impacts - personally learning the skills to pull myself out of that spiral has been transformative even after the fact because I know I will be able to cope now if something like that happens again.

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

Thank for educating us about Pots my nice had it.

I have POTS too. I cut my hair coz it was taking so much energy to maintain. I have to sit while taking a shower (and cooking). I have to budget my energy and prioritize things to make life easier.😢

Thank you for sharing your tips and ideas! It is appreciated.

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.

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.

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.

I am in the process of being diagnosed and seeing specialists for POTS. I have been struggling with my symptoms so much and I feel like I have tried everything to try and manage them but I just constantly feel worn down and no energy. I am not sure what else to do to help manage my symptoms. It has gotten to the point where I have to call out of work because it is too much on my body. I want to try and see if I could get disability benefits but I don’t know if I would qualify because I don’t faint, I just blackout and stay conscious… I have fainted twice but they were years apart. I went to the ER and got no answers either, they just shrugged me off and made me feel like I am just being delusional or making stuff up. I am at a loss and the more I stress about it, the more I feel even more burnt out…

I am so glad you uploaded a new video. Thank you for your wisdom and being so genuine and sharing your experiences that somehow feel familiar and safe . I am truly proud of you . Watching you being so kind and gentle to yourself is an encouraging and precious experience <3

😅😅 i already wanne know how you're doing now. I hope its a story of successful recovery! And i like to think you are up and walking around out in the world with no problems. I also have POTS ( bed bound atm) i hope there is hope for us all

Oh by the way, do you have socks up to your groins? Or your knies? :)

The thing about not being hard on yourself is so true. I learned to be very kind to myself after being hard on myself forever. I’m so proud of that to be honest! And you can be proud of the progress you made too 🥰

Thank you so much for this video! I’m glad to already know and do most of this tips, but the exercise thing is so hard on me. I’ve been putting it off for so long or only doing it at the end of the day laying on my back, out of guilt or because I just want to get better so badly. After breakfast I’m just so tired, so I’ve been thinking about moving before it too. Thank you for this great advice, also about the consistency and changing the amount of minutes. ❤❤❤ P.S. I just found out I replied to a video about your move that you posted recently but MADE very long ago. You referred to it in your POTS story of course. Sorry, didn’t get that. I thought you just moved but now I realize haha 😊

Ohhh I feel you girl. “Down, going backwards, and then coming where I was again”. Yes… I really hope your move will help you shift to a new phase and will also give you your feelings of comfort and safety like this one did. Moving is never easy, but when you’re sick you’re spending SO MUCH TIME at home, that I can understand that leaving a place you have “only” been living in for two years, may feel like you lived there for 10+ years… That’s the way I feel about the place I’m in now, in which I fell ill two weeks after moving. Best of luck to you, thank you for your videos and greetings from the Netherlands ❤ Milou (28)

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 ❤

Hi! Does your heart rate still increase when you wake up?

Thank you for making these videos

good ideas

August 20th is my birthday, at least your not broke and addicted like me, great video

this was beautifully made ! i hope youre doing well this days. i also have POTS and its very hard

🙏 How are you doing these days?

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 🕊

Good video. Helps me understand the illness. My wife has weird sysmptoms after covid infection. 17 months no diagnosis yet.....

geeze. awful .my wife has similar

❤

Hi there! I came across your channel while researching POTs stories. I also have experiences with POTs (long Covid version, for almost a year now). While it's gotten a lot better thankfully, I understand how horrible the symptoms can be as well as dealing with the ups and downs. I appreciate you sharing your reflections! I think they resonate with many of us out there. I hope you get many more moments of joy and happiness in the near future 🙂

It’s crazy how we have to reshape are mental to our new reality. It’s very hard for others to understand. I don’t have the answers and on my journey as well. My advice would be to take one day at a time good or bad and fight the best you know how. I’m a believer so I would pray 🙏🏾. But do what comes naturally for you. Thank you again for sharing your story. Idk how you have energy. Take care

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

🙏

I am bedbound too; 3 years now 😢 Can I contact you?

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

It’ll be okay. You’re doing so good ❤

I am sorry you are going through this but it makes me happy that there is someone out there going through the same things I am. I’ve been in a flare this week because of 100°+ temps (and cuz I over did it a few days in a row 😅) watching your videos motivates me to start making videos for my channel again (not this account) thank you so much for being open and raw about your health! ❤❤

Love and prayers always my dear QUEEN Jenni!!!

Hi, Jenni! This is the first video I’ve seen of yours and after hearing about your POTS and knee issues, I have to ask if you’ve ever heard of or been evaluated for Ehlers Danlos Syndrome or Hypermobility Spectrum Disorder? It is often associated with POTS and causes joint problems, along with so many other things!

I have had that exact same feeling of tension and anxiety in my body, while mentally feeling calm and peaceful. Would be lovely if there was a way to get rid of that feeling!

I didn’t notice your channel name right away, but I thought it was a cool coincidence when I did because I know someone named Jenni who also has POTS, she even spells her name with an i like you do

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.

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.

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...

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

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.

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 RUclips 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 RUclips 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 RUclips 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.

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.

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 RUclips 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❤

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