HCD77

Thank you @yogini I saw where some POTS patients used them together. I was hoping it could reduce my heart rate and maybe that would help with anxiety when my heart rate goes up. I just went outside to pick up some debris in my yard and my heart rate according to Apple Watch went up to 179. I do stand for short periods of time ok but anything the least bit strenuous my heart rate goes up high. I’m thankful what I can do but I really need to return to work . 

I’m taking Midodrine 10 mg 3xs a day and it has really worked for some POTS symptoms. I can stand longer without symptoms. I really want to return to work but I feel like I have anxiety and with the COVID 19 being a teacher. I wanted to try propanol for anxiety. I know low dose propanol is used for POTS too. My psychiatrist thought it might be an option too since I have extreme adverse side effects to many SSRI I have tried. Need help Has anyone had success with both? 
 

Thank you 😊 

Thank you @Pistol for sharing your information. I am a teacher and navigating what to do with the school district so I don’t lose my disability is overwhelming. Sometimes I don’t know where to go for resources. I am waiting to hear from the company yet I need to tell my school district soon because I am under contract with them. I am so confused and sometimes feel hopeless. I am all alone with no other financial support so it is so detrimental I make good decisions. I have read every article online about LTD and Dysautonomia and applying and how to make smart decisions. My insurance company told me the same thing you stated except I would lose my disability if I quit or resigned before claim accepted. School is starting soon and I feel so lost on where to go to find resources to help me. 😞

You have been so helpful 😃

I am waiting on approval for long term disability approval that I took out with my employer . Any tips ?? 

Has your cardiologist put you on any meds? 

Have you tried DGL licorice? This usually works for me. It helped me get off PPI too. PPI have terrible rebound reflex like you said. I was only on them for 2 weeks. Also Kefir helps. 
 

Dr. Andrew Weil recommends these. 

• Use DGL (deglycyrrhizinated licorice). Slowly chew two tablets or take a half-teaspoon of the powder before or between meals and at bedtime. Taper your dose down after your symptoms are under control.
• Consider slippery elm. It can heal irritated digestive tract tissues.

Thank you all so much for your feedback !😃 I am newly diagnosed and mornings are better now since I started Midodrine. I see an electrophysiologist here in my town, but I did get a telemedicine visit with a automic specialist on the list. I am very excited. All your feedback and support has really helped. I talk to my new doctor July 1. Thanks again the support here is amazing!! 😃

Thank you all  so much for all your help! I did take the head of the bed down and I feel so much better. It just different for everybody. I am such a rule follower in order to get well I like to try everything that is suppose to work. I am newly diagnosed and I appreciate all of you and your support in this forum. 😃

Thank you all so much for your feedback! I am newly diagnosed and appreciate all the support here! 😃

Today I saw my dr and he said I needed to have between 6,000 to 8,000 mg of salt per day. Im newly diagnosed . A friend went with me and wrote down the 6,000 to 8,000 mg but she didn’t write down salt or sodium . I know they are different calculations. I know we figured it to be about 1 tsp of salt per meal. I’m so so confused . I could ask him again. It just seems like a lot of salt. Anyone have any idea?  Thanks 😃

Has anyone had a negative experience after elevating head of bed? I just know am having headaches and lots of dizziness. Woke up the first 2 nights with stiff neck. Any suggestions? Lots of the POTS protocol seems like it’s causing problems I didn’t have before. Would welcome any feedback. 

Thank you 😊 

I am a newbie here too. I’m so sorry you are going through all of this. I’m like you are I sometimes feel good and so excited I over do. I’m probably in denial too. I am being treated for POTS now by electrophysiologist. I think he misdiagnosed me though. I was diagnosed with SVT had a cardiac ablation and I just read that an ablation can make POTS worse. I usually don’t go on Facebook but I do think there are some good support groups you will find. 

I was wondering if anyone took Thermotabs or other salt tablets. I seem to be seeing some improvement at least I can be on my feet for longer without feeling like I’m going to pass out, have a panic attack or have wobbly legs. Also driving a car is when I feel the best ( of course short trips) does anyone feel better when driving? 

I went for a follow up after ablation. My electrophysiologist was really sarcastic when I told him I thought I had POTS and thought I had it for years. He told me he didn’t want to see the data from my Apple Watch if it didn’t show heart waves. He told me to increase salt , fluids and elevate my bed. I’m already wearing hose. He then said I will see you in a month because you will probably need meds. He then said so I could hear again “It’s always good to have a patient that self diagnoses them self” I felt so down and angry. I live in a small podunk town in West Texas with horrible medical care. I’m following protocol and of course reading everything about POTS and Dysautonomia. I know I have had it for years but just in the last 9 months I have been on a disability where I’m not able to work. Thank you for your info. I am learning so much about a mystery illness I have had for years . I just thought it was anxiety once in awhile , varicose veins, and low blood pressure. It has progressively gotten worse maybe because of being prediabetic. 

On 6/13/2020 at 5:47 AM, Pistol said:

Hello @Lisa C - I am sorry you are so unwell. The nightmares and high heart rate during the night could be from elevated norepinephrine ( adrenaline ) levels. This used to happen to me, I have HPOTS. In my case this happened because my adrenaline levels did not go down during sleep as they do for normal people. After about 3 hours the levels are supposed to drop to allow deep sleep, if they don't we either wake up or have light, restless sleep - nightmares and tachycardia can be a symptom of that. Feeling worse in the mornings is also typical for that - your body did not regenerate with restful sleep, therefore getting up is very stressful and can trigger our symptoms. 

About the tachycardia - do you have a wrist watch that displays your HR? If not maybe you could count your pulse when this is happening. Otherwise maybe you can ask your doctor about a halter monitor? Also - what meds are you taking for your POTS? It could be that you might benefit from a beta blocker or possibly an increase of any meds you are taking?  Have you mentioned any of this to your doctor? -- It could be a flare, which commonly happens to me during the warmer months of the year. Avoiding sun, extra fluids and salt and wearing compression hose can help, otherwise rest in a cool house, eating 6 small snacks rather than big meals and scheduled but very mild supine exercises to strengthen core abs and legs can help. 

I wish I could give you better advise but at this time I guess it would be important to rule out recurring SVT and - if that is ruled out - consider a POTS flare. That means simply doing the above things and waiting it out ( I know how frustrating and depressing that is ). Best of luck 😗!!!!!!!! Please let us know how you are getting along.

 

Hi Everyone!

I’m a newbie I probably have had parts for a long time though but it’s progressively gotten worse now I’ve been on a disability for nine months and didn’t even know what I had it seems like I have some good days but it’s getting worse and my mornings are awful. 
 

I can see having symptoms when I am standing but I have horrible symptoms for hours after I lay down where I am fatigue SOB and chest pain. I even thought of going to the ER this morning. I hung in and they got better in a couple of hours where I could get out of bed. Does anyone have the same symptoms shortly after getting up and then laying down where laying down you still have them? Also I wake up in the middle of the night several times with nightmares and then high heart rate. I thought this was a SVT . I was diagnosed SVT and even had a cardiac ablation. I had POTS misdiagnosed and SVT misdiagnosed for years thinking it was anxiety. 
Does anyone have waking up with high heart rate? 
 

I know these are a lot of questions to ask. I’m just lost 

Thank you 😃

I’m so sorry you are having a hard time on Lexapro. I had a terrible reaction on a low dose and ended up in er by ambulance . I also was prescribed hydroxizine with it. I feel like my body was on fire. This is before I was diagnosed with pots. I am sensitive to all meds I was given to treat my so called “anxiety”.Prozac, Effexor, and Burspar. Xanax worked until it started giving me problems taking it nightly . So now  I am on a diazepam taper that got me off of Xanax.  I wish I would have had my Apple Watch back in October of 2019 when my severe symptoms started. The Apple Watch shows how my heart rate goes up. It would have saved me a lot of devastating heart ache and huge medical bills . 

I hope you find something that works for you. I haven’t been able to tolerate any anti depressants . I know many people without POTS that they have helped.