MomtoGiuliana

Yes I have been severely fatigued to the point of being bed/couch bound for hours or days or weeks. It can be a symptom of POTS. I do think it can be triggered by overdoing physical activity when in a bad POTS flare.

Patients with POTS may or may not have BP changes. The defining feature of POTS is heart rate increase of 30 bpm on standing. From our website: The criteria for diagnosis of POTS is: (1) a sustained increase in HR of at least 30 bpm within 10 minutes of standing (often with an absolute upright HR ≥ 120bpm); (2) in the absence of sustained orthostatic hypotension (drop in BP > 20/10mm Hg); (3) with symptoms of orthostatic intolerance for at least 6 months. In patients < 19 years of age, there is a higher HR threshold for POTS (increment  ≥40 bpm or absolute uprights HR  ≥ 120 bpm) due to physiological orthostatic tachycardia in adolescents and children (Singer et al., 2012) (Arnold, Ng, Raj, 2018) POTS patients experience a myriad of symptoms, in my experience. My own symptoms have run the gamut and varied over time. We have a list of symptoms that have been reported by various medical journals here: https://www.dinet.org/info/pots/pots-symptoms-diagnosis-and-prognosis-r96/ Severe weakness and exhaustion are symptoms of POTS and I have personally experienced it. It is possible to have POTS and OH.

Probably you know this, but staying very well-hydrated is essential for most of us with dysautonomia. Added salt also generally seems to help many of us. I find this can help me with brain fog. I agree that diet and rest are also important factors.

@JimL b/c of the gastric band, have you been tested for vitamin deficiencies? I was found to be B12 deficient last year (I am a vegetarian but it never occurred to me or my doctor this is a risk factor for low B12--as is generally getting older!). People who have had gastric surgery are also at increased risk from what I read at the time. I had no idea what a toll low B12 can take on your nervous system. I had a severe POTS relapse last year that disabled me for 2 months--it included a lot of digestive problems which I had not had before with POTS. Do you take a B12 supplement? You may want to have your B12 level tested and consider taking supplements anyway even if you are not found officially deficient. B12, from everything I have read, is safe to take in large amounts b/c it is water soluble. Apologies if this has already been discussed elsewhere in the forum with you.

I continue to deal with swelling in my hands and feet. I am not sure it is worse than it was in 2010. It still resolves--eg overnight, if I have swelling in my ankles. I now attribute some of it to perimenopause and aging, as much as being related to POTS directly. I wear compression socks all the time now and that helps a great deal.

Something to do with natural diurnal variations in cortisol? I think this was suggested to me once.

I think in many states you can simply contact them and let them know you are too ill to serve and they will excuse you without needing documentation.

It's very hard to predict. Everyone's situation is different in terms of symptoms, level of disability; and things can change over time. For some people the flare ups can be worse over time, for others not. After I improved greatly, I would have short flare ups lasting several days to a week at most. Very few were bad enough to make me take off work. But last spring I had a severe flare up. I was bed bound/house bound for 2 months. Fortunately there are medications and other treatments that may help. You might look into IV fluids as an option. This has helped me tremendously. With pregnancy it can be more complicated to figure out what is going on bc some symptoms (eg nausea) may be more due to the pregnancy than to POTS.

I only had one pregnancy, at age 33-34. I developed severe POTS (I was disabled and at times bedbound) during the pregnancy and it became worse post partum. I was sick for about a year. I did not attempt another pregnancy. However, I also did not have a diagnosis (except I was told I was depressed) until about 4 months post partum. There are medications and other treatments that could help during pregnancy. So much more is understood now too than 16 years ago when I was pregnant. Do you have a specialist you could consult with--along with a high risk ob gyn? High risk ob/gyns would know more about medications and pregnancy than other doctors would.

Welcome new members!

Just wanted to make sure you are aware of our list of physicians: https://www.dinet.org/physicians/ Also there was this recent discussion that may be helpful to you: https://www.dinet.org/forums/topic/29957-dr-chung-john-hopkins/

There are past discussions about this. Here is one: https://www.dinet.org/forums/topic/10761-adrenaline-and-watching-movies-games/

I do this as well as find it effective.

Pedialyte has been helpful to me, also coconut water, which is actually even richer in potassium. I add salt to the coconut water when feeling particularly badly.

Yes I have had two very severe POTS episodes in my life. Both lasted months and I was too disabled to work during these times. I did go back to full time work. One thing that helped me last time was continuing to get IV fluids once a week for a few weeks after going back. In general getting adequate salt and fluids is important for me to feel well, so hopefully if you need that, which likely you do, you have a job where you can drink fluids as much as you need to (which includes maybe more bathroom breaks too). Best wishes with returning to work!

So sorry you are having a difficult time. I hope you can talk to your doctor soon and go over all of these concerns--do you have a general practitioner who could do this? Anxiety about symptoms can be as hard as the symptoms themselves sometimes. As far as protein in urine, I believe it is normal in a random sample of urine for there to be trace amounts. And that amount could vary from sample to sample.

Thank you everyone for your thoughts on a chat room. If members would like an avenue to have real time discussions about any topic, then DINET might consider adding a private group to our Facebook page for that purpose. The purpose of the forum is to share information between members. We do have PM (private messaging) here on the forum for discussions that people want to be private, so the only purpose to adding chat would be so that people didn't have to wait for a response to their topic, assuming others are available in real time to respond. The downside is that it would eliminate our ability to moderate, so it would take away the protection that we now offer members - protection from solicitation, potentially dangerous medical advice, promotion of non-evidence based information, etc. As an organization there is potential liability that we have to take into consideration, but it is also an important part of DINET's mission that members/users are provided with evidence-based information, and are not subject to advertising. It's also important to us that communications between members on our site are supportive and kind, especially because many members seeking information and support on the forum are quite unwell and struggling with diagnosis, treatment, etc. For these reasons, moderated public discussion on this site is important to us.

Can you research whether there are any electrophysiologists (a type of cardiologist) in your area? They are often knowledgeable about dysautonomia. Neurologists as well may be.

Do you have a general practitioner? If so they should be helping you to see a specialist asap if that is needed.

Mine has been low when in the ER a couple of times in the past, when I was in a bad POTS flare.

This discussion may be helpful: https://www.dinet.org/forums/topic/25579-what-is-air-hunger/

I was able to get IV saline at infusion center at local hospital. It seems to be a standard treatment for POTS in my community now. While I was there I met 2 young women also getting IV saline due to POTS.

IV saline helps me a lot. When I went back to work after my last bad relapse, I continued to get IV fluids once a week for a few weeks. Are you able to put your feet up, even though sitting? I know for me, sitting for too long with my feet down on the floor, can trigger symptoms when I am in a relapse. Hopefully your doctor can confirm if you do indeed have POTS as that may be helpful for treatment.

Have you talked to your cardiologist about these concerns? If you have a family history of heart attacks and you are experiencing chest pain it can be hard to know what to do. Since the pain is so frequent it seems you need to be in touch with your cardiologist as to how to evaluate this at home and how to know if it is an emergency.

Unfortunately, when in a hospital, you need to advocate for yourself. I know this is hard when you don't feel well. But it is your opportunity to get all questions answered by various specialists. Is anyone with you who can help with that? They should respond to all of your questions--it sounds like the reason you are there is to obtain a diagnosis. If you are not getting answers you should talk to the nurse to see if she or he can advocate for you. Hospitals are busy places and the patients with the most severe situations and/or the more demanding will get more attention. PVCs and PACs are common in POTS patients (feels like a missed beat).