HCD77

@DeltaAll I know is last year at this time I felt really good. I was working a full time job and didn’t even know I had POTS. I did have the neuropathy in my feet, red feet upon standing, heat intolerance , wore compression hose because I thought it was varicose veins, so basically I had many symptoms of POTS but thought it was other things. Then in early October I went to get my regular flu shot and exactly a week later started have heart palpitations, night sweats , night mares and waking up every 2 hours. I immediately went to the doctor , but all tests where fine. It kept snowballing into major fatigue, nausea , chills all POTS etc . Here it is a year later and I am wondering if it was the flu shot that exacerbated my existing dysautonmia that I didn’t know I even had . I still wonder to this day if it was the flu shot . I’m trying to decide if I want to take it this year like you . If I don’t this will be the first year I haven’t received it. I probably will take it though because I’m high risk because of age .

@Pistol, That is exactly what I feel like too! I swear I’m getting better and then I feel so horrible the next day!!! I get so discouraged and very down. It seems like doctors and vacuuming do it to me too! Ugh !!! I know I can’t vacuum. I just try to get through the day and then hope and pray the next day will be better. I also research and research to figure out what I did that could have triggered such horrible symptoms. I guess I’m just hoping I can change the outcome and have more good days.

Thank you @MomtoGiuliana, I will check other forum posts. I did see lots of posts about dental procedures but I wasn’t expecting the reaction a day later. I did do well during the visit I thought I was doing great ! I was calm and I didn’t even take a med like I was planning to. That is what puzzles me about POTS , that I can feel so good and hopeful and them BAM ! I literally feel so so sick. Why does this happen ? I try to avoid triggers and it still happens. I question everything I do ( dentist appt or was it the milkshake afterwards, on and on) I just feel like I should be feeling better because I’m taking my meds etc . I’m glad I see a specialist for the first time and I’m going to get many autonomic tests done. Maybe Dr. Suleman will be able to help me. It’s been a year with debilitating symptoms.

Yesterday I went to the dentist to get a regular cleaning and 4 cavities filled. A friend drove me. I felt fine the whole time I was there. Came home very tired and rested. Then normal good evening. Normal insomnia I usually experience . Then this morning woke up with headache , shortness of breath, and total fatigue where I couldn’t get out of bed. This is the worst I have felt in a long time . Anyone experience this feeling after a dental procedure?

I wonder if I could have gotten low blood volume after my emergency hysterectomy . I had to have a transfusion with 2 liters of blood. My POTS systems started shortly after, then returned 5-10 years later as of now. I had 5-7 years of pretty good health. I had no idea it was autonomic dysfunction. I was 50, but started having weird symptoms after I had my son at 40.

@merkat30 I’m so sorry you are having such horrible symptoms at night. I still have awful insomnia. I fall sound asleep and then wake up between 3-4 am if lucky . Wake up with night sweats , then I take a 5 mg of melatonin and try to go back to sleep. I can go to sleep relaxed and calm and wake up feeling horrible. It is the worst thing to have chronic insomnia. Sometimes I wake up with achy pain head to toe. Yes I have nausea too. The nightmares can also be very disturbing. I have a prescription for gabapentin but a little scared to take it. I may try it soon , I heard it helps with the night sweats and autonomic neuropathy in my feet that is also painful at night . Have you tried gabapentin? I hope you have some restful sleep soon. Take care

I see my specialist at the end of October for the first time. Thank you so much for your comments. I hope I will have a better of quality of life soon.

Does anyone have excruciating painful body aches and tenderness sometimes? It’s not all the time but it seems like after I sit at a computer or maybe I’m doing too much. I was just wondering if anyone else has this symptom and what relieves it? I’m in real pain and I was doing real well even walking. I see a specialist next month. I’m on a low dose Midodrine and propranolol and normal non pharmaceutical protocol.

@roamer1That’s awesome ! Please let me know how the autonomic testing goes and your appt. You can pm me if you want. I’m so glad you got in. I’m sure he will be able to help you. He’s suppose to be the best in Texas. Best of luck to you !!

@Green48 I’m so sorry you have had such rough year. I know I took some amoxicillin months ago that gave me heart palpitations. I however am very sensitive to all meds and the first thing I notice is most meds effect my heart rate.

@roamer1I’m so sorry you are going through this! You are very fortunate to get a referral to Dr. Vernino, I’m sure he will get to the bottom of what’s going on with you. I’m waiting to see if I will get to see him myself. I was diagnosed with POTS by my electrophysiologist. Lots of waiting and paperwork involved . There is also a Dr. Suleman in Dallas at Heartbeat Clinic . He is an advisor on dinet.org website. I have a telemedicine appointment with him this Wednesday. I wish you the best with Dr. Vernino.

I’m just curious since POTS and other Dysautonomia’s can be so life altering. I know 25% of POTS patients are not able to work or attend school . I was wondering how many people can still work or go to school ? If you can what is career that enables you to still work? I am a teacher and I am not able to work because of my symptoms.

I have lost 18 lbs since my symptoms started in October 2019. It is scary weighing 118 lbs at 5’10’’. A year ago I weighed 136. I have always been thin, but I’m so concerned even seeing a dietitian. Between being a prediabetic and eating low carb smaller meals it’s so hard to put on weight. I have a good appetite and eat through the nausea, but still not gaining. I have telling my PCP since October I have unintentional weight loss which should be a huge red flag for all doctors to listen and investigate. I get so discouraged.😞

Thank you so much @autonomicreg !! I had a telemedicine appt with Dr. Suleman several months ago he encouraged me because of the pandemic to just stay with my electrophysiologist here and not come to Dallas where the cases are surging , but I have an appt with him in person in October. Hearing your experience makes me feel very hopeful. I would have already seen him but the COVID has really made getting medical care a real challenge. I sure hope you find a doctor that helps you as much as Dr. Suleman did. Since you have had all the testing , would you be able to just continue with him using Telemedicine until you find a doctor in NY? I hope you get the care you need.

Hi @autonomicreg I’m in Texas , May I ask where did you get your autonomic testing? I am awaiting a referral for Southwest Medical Center in Dallas. I did see a video called Changes on the dinet website . The doctors name is Svetlana Blitshteyn. I was really impressed . If I were in NY I would make an appt. with her office. I think she’s in Buffalo. Best of Luck!

@Jennie, I live in Texas about 5 hours away and I was just looking into POTS Care. I did find reviews on some blogs. I know it can cost up to 5K-10K if you have a budget for that, I know they don’t accept insurance. I have heard they use Biofeedback ( Heartmath )and meditation. I am definitely one who is interested in a more wholistic approach but the cost and reviews made me very weary. Hopefully you can find someone on this website that has first had knowledge . These are the blogs I found when I was researching POTS Care Treatment Center. This is a past post I found researching . Hope this is a good start until you can find someone that received care there recently. 😃

@Pistol I am so sorry this happened to you. Please take care and rest. I hope you get better soon. You help so many on this forum by sharing your knowledge , experiences and your positive attitude is always an inspiration.

@p8d this has been so helpful for me.

I am newly diagnosed with POTS and I can tell I feel so much better as the day goes on just like I am back to normal . After I take my meds and salt/fluids/ and put on my compression hose I feel so much better. Then in the morning I feel awful and it starts the pattern again. Does anyone else have a pattern like this ??? Sometimes I feel like I don’t even have any symptoms. I would be interested in your stories because I just don’t understand the huge difference. I am so thankful for my symptom free day. Then in the morning I feel awful until about 9:00 after I exercise.

I’m so sorry about your wife. I know what it is like to be afraid of takings meds especially SSRI’s. I have tried Lexapro , hydroxizine , Effexor and Burspar. All had frightening side effects even at low doses. I wish there were a med that would help me. I know many people that have been helped by taking SSRIs and SSNRIs. It’s just trial and error. I am newly diagnosed with POTS , before I thought it was anxiety. I took the meds because I thought I had anxiety. Now I take Midodrine and it seems to help me. I hope your wife finds a med that will help her with her symptoms. She is very fortunate to have a caring husband to be an advocate for her medical needs. I did find an old post with info on Cymbalta https://www.dinet.org/forums/topic/8942-cymbalta/

Who diagnosed you? My EP diagnosed me but he also performed a cardiac ablation on me thinking I had SVT. I talked to my neurologist and told him I was diagnosed with POTS and he told that is why my EMG was normal 2 years ago. He said I had autonomic neuropathy . I’m sure I have had this a long time just went misdiagnosed like all of us. There is a list of autonomic specialist on the diner website. I’m being referred to a specialist on the website by my neurologist, but especially because of COVID it is a slow process. I know the feeling about running to so many doctors. Here is a website of specialists http://www.dysautonomiainternational.org/page.php?ID=14

Kristin , I’m awaiting a disability now to be approved. I am also a teacher in Texas, another hot spot. I have been off on disability since October 2019 with a mystery illness that turned out to be POTS that I just got diagnosed with. I would like to go back because I need a job, but I probably will not since I still do not feel I can perform my job duties. I’m also high risk because of age. My small Texas city is surging right now. I do know a colleague that had several staff members with COVID 19 but she did say they recovered.One was very sick. I’m sure they don’t have POTS though. Nobody knows about POTS in my small Texas city!! Not even Drs or ER. I’m very scared to go back I also have my 89 year old mother living with me. I know a lot of schools in Texas are only doing remote the first 4-8 weeks. I already feel bad so I can’t imagine getting COVID on top of POTS. I have heard some teachers that are starting their own business of tutoring and being available for remote tutoring for students learning at home and to give students support. I would also check out remote learning teaching jobs . There has to be jobs out there for teachers. I know so many teachers that are really scared to go back too.I haven’t experienced COVID , thank goodness !!! This is when I wish I worked for google they are working remotely till the end of 2021 . I hope this helps .😃

@Pistol I guess I was hoping it was wrong, ugh my HR went up to 179 today ! Just picking up a few twigs on my lawn. I think I’m in the denial stage thinking I’ll just get over this and find the right meds. This HR was on meds! 10 mg of Midodrine 3xs a day. I want to try propanol to see if it helps . The Apple Watch is what made me start thinking I had POTS. I also measure HR with Pulse Oximeter but I never see it above 116 maybe 120 .

My Apple Watch is showing very high heart rates when I stand . I was wondering if it is accurate ? Does anybody use an Apple Watch to monitor heart rate ?