My POTS Story | First symptoms & Diagnosis
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- Опубликовано: 5 окт 2024
- 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....
![KSI - Thick Of It (feat. Trippie Redd) [Official Music Video]](http://i.ytimg.com/vi/At8v_Yc044Y/mqdefault.jpg)
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 seem
If I tried walking for 5 min, I would faint for sure. One of my faints resulted in a broken leg. Started after having a bad covid infection.
Your heart rate increases insanely fast. It feels impossible when this happens.
@@jamielashley6219 I agree. It will literally stop you in your tracks. Low dose beta blocker and a low dose anxiolytic can be game changers for a lot of people
@@cbliss look up the chop exercise protocol. It says it's for children but adults also use it.
@@jamielashley6219 look up the Chop exercise protocol. It says it's for children but adults also use it
I also was diagnosed with POTS. I first fainted when i was 7 years old and from there kept fainting without an actual diagnosis. I would get others symptoms such as flare ups without actually fainting, syncope, dizziness, rapid heart rate, and sweating or feeling hot. I can’t even blow up a balloon or stress myself out at the gym. Before i was just given vitamins and iron pills to take because i was also in borderline of anemia. Before getting diagnosed with POTS. I believed that would be it. I ended up fainting while getting tested with the tilt table test. I told my mom that it feels like such relief to be able to explain why this was happening to me. I havnt had major fare ups lately but it felt like hell when i was going through it. I told her it “feels like i’m dying”. Hearing someone else’s experience and story about POTS is very comforting. I’m glad i found this video, I can relate so much with you and hope it gets better.
i had pots only for 1 year, increased 30 beats per minute.. worst year of my life but it dissapeared the food you eat is important
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 ❤
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.
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.
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❤
Hi.
Pls guide me , how you good better ?
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:)
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
It can be so hard, but it does get easier with time. Still working on finding what works best, don’t give up!
@@jenniscollection Thank You
I workt as a commercial diver before covid 2022, but the decline started 2021. Been fucked up since then. Weird blood blodpressure and brain fog etc. I dont care anymore, best way to stay sain XD
Just to add on this thread. As I’ve been going through countless appointments and talking with doctors. They are linking my PoTs to when I received my Covid vaccine shot in 2021. Again, before the shot I used to work 80hr weeks and run 25miles a week. But afterwards then brain fog, high blood pressure and etc. started. There are new studies coming out linking the two together. I don’t know if this helps anyone but this is the path I’m on.
Thank you for sharing your journey. Was especially helpful as I experience low blood pressure with other symptoms where most experience high blood pressure. I am 83 yr old and much of what is now being shared online was not recognized when I was younger. Looking back I believe my mother had symptoms too. She was diagnosed with hypoglycemia as other testing/knowledge was not available then. A lot makes more sense to me now. I realize it is very complex. Just know your video has been very helpful. Wishing you well and continued progress in your young life .
I wanted to mention that there is an exercise program specifically for pots. It's called the Chop exercise protocol. It was designed for children but also used by adults... Since people with pots have a tendency to faint and have difficulty walking, a recumbent bike is suggested.
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 🕊
Thank you! Im still searching, slowly making improvements here and there! I wish you and your daughter luck:)
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.
Thank you for making this video! I want to send you a hug!
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🙏🏼
Consider cervical instability. Dr Ross Hauser has videos on this on RUclips! Just an idea ❤
@@peachysquirrely I greatly appreciate your comment because I forgot to mention to doctors about this. Caring Medical is such a great resource on YT. Doctors normally seem to brush me off since I’ve had 2 CT scans of head and neck normal last year and MRI normal this year plus had abnormal EEG of brain this year that can’t be explained. You’re my friendly reminder to continue to advocate for myself ❤️
I defiantly has a way of showing you the things you select being grateful for while being healthy. Praying and writing help a lot, just figuring out how to deal with all the mixed emotions in general can take time. Give yourself grace. Do research on thiamine, I started taking it recently and so far it seems like it’s helping a lot!
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.
I need recovery methods' this shit is now affecting my life.
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!
I'm honestly getting tired of this condition. I struggle a lot from POTS and I collapse and faint and stuff like that. But the doctors won't diagnose me, I keep getting different diagnoses and none of them fit like POTS. Honestly so tired.
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.
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
Thank you :) ! Yes, I always say I’m stronger because of this, because I know how to cope with it now. Defiantly took some time to get to that point mentally but I got there. I hope all is well with whatever it is you are going through!
Love you Jenni, great job on this video. Surely will help others❤❤❤❤
Thank you for sharing, this really has helped me feel like im not alone
You’re not! I see you!:)
Good luck. I wish you well and will keep you in my prayers.
Thank for educating us about Pots my nice had it.
this video was so helpful for me thank you
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.
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.
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:)
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.
I need your help.
I spell my name like that, too! I am currently waiting on diagnosis.
U don't have too always b3 happy
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.
Try to find a POTS specialist near you, I also suggest seeing a cardiologist and neurologist if you’re able to just to make sure that it’s not something else. I’m assuming you’ve seen an endocrinologist to get your hashimotos and hormones checked, but if not maybe start there! I hope you find what you need to get feeling better:)
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
Have you lost a lot of weight due to not being able to eat?
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!
Have you looked into MCAS?
I was officially diagnosed yesterday. My episodes began in 2022.
I hope you are doing well!
OMG I been dealing with this since I can remember 5-10 years old I’m 41 now, and after many Dr’s visits and many wrong diagnoses like depression, inner ear problems, dehydration, anxiety, high blood pressure, and then self medicating for years I finally was told I have rheumatoid arthritis, then fibromyalgia then prescribed Physical Therapy and they seemed like they thought I was lying then I had an attack in front of them and they figured I had Cervical Instability, (I had all the symptoms, Nausea, blurred vision, hard to swallow, can’t sleep, rapid heart beats, palpitations, neck gets stuck, vertigo, pale/fainting spells etc..) Finally got a MRI approved and I have pinched nerves and Disc degeneration now. I believe if they would of listened years ago or diagnosed me properly it wouldn’t of caused so much damage. They referred me to a Neurosurgeon but I feel that’s not who I should be seeing but I also have bone spurs on my vertebrae and narrowing of my c/5 - c/7 left side nerve exitings and they’re pinched. I feel I have Cervical instability which is affecting my Vagus nerve and POTS. I had anxiety but was also relieved they finally took me seriously and found issues. I’m in CT and have to see what DR’s are around here. I’m going to UCONN for the Neurosurgeon maybe they have someone there. Thanks for sharing your story and hope things have gotten better, I know how hard and scary it’s to deal with this issue.
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.
did you experience side effects from the meds?
You are a hero.
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.
Thank you for making this video. I'm currently living looking for answers for my daughter's medical issues and it seems like EDS and POTS might be the reason. She has a cardiologist appointment soon, and I'd love any advice about what I should discuss with him to help push her forward toward diagnosis and relief from some of her symptoms with correct diagnosis and treatment.
I think I may have this. I already have Chiari malformation that affects the nervous system. I thought the sudden rapid heart rate was from the Chiari. I need to have the table test. I just left the ER last night from all kinds of crazy symptoms including high heart rate. All tests normal so definitely points to neurological.
Thanks for sharing, I think mine came from binge drinking coffee 😩
haha could be, I’ve never liked coffee
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...
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!
Hi Jenni, does your blurred vision improve when you lie down?
Hi, generally, yes. But it honestly depends on how bad my symptoms are at that point.
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 don’t necessarily have to have low blood pressure to have POTS some people have high blood pressure. Normally, it’s one or the other but not always. As far as heart rate, the average persons heart rate will spike for a few seconds before returning to normal. With POTS it tends to just never really go down. The creeping back up I would think would still put you as having POTS, but I would defiantly ask your doctor and get your heart checked if you haven’t already.:)
geeze. awful .my wife has similar
After years of suffering, I got diagnosed with POTS today and I know EXACTLY how you are feeling! ❤️🩹