MomtoGiuliana

Yes, after a very bad year long bout of severe and disabling POTS, I improved. It was about 4 years until I became essentially symptom-free (by that I mean very minor symptoms, I was able to generally lead a normal life). I very occasionally had small flare ups over a 15 yr period after that. Then I had a very severe flare up 2 years ago and was sick for 2 months (unable to work). Dr found my B12 was low. I guessed that was the trigger but my specialist didn't think it was related. Then 2 yrs later I had another bad flare up. I just recently recovered from this. It was about 6 weeks of severe symptoms. No idea what triggered it. I am in perimenopause however so that may also explain both of these more recent flare ups.

I remember you too! Nice to see you here again although I am sorry you had to come back. I hope you get relief soon.

I've had episodes like this and I was told anxiety or panic attacks but I think for us w POTS it may be more complicated than that. However, I am over 50 and been having these symptoms usually in pattern of flare ups since my late 20s and it has only gotten better and less frequent over time, so I can only assume it is POTS and is essentially benign. Increasing fluids and salt always helps me when I get into a flare, and can help reduce these symptoms. Also IV fluids. Sometimes it is triggered by an infection--eg UTI. Often worse before my period starts. I hope bc of these symptoms they did an EKG and are ruling out any cardiac problems. Good you are getting blood and urine tests too.

I get heartburn during flares and rarely otherwise.

Whenever I am in a flare I lose weight.

Thank you for coming back and sharing your experience. So glad to hear that you are improved!

Our physicians list includes doctors in the UK. Not sure if you'd be able to see any of them but you may want to take a look: https://www.dinet.org/physicians/

So sorry you experienced this set back. Setbacks are so frustrating and frightening. That is such a good point not to burden ourselves further with questioning why--especially "what should I have done differently". I agree that so much of the time the flare up or set back is not connected to anything we probably have control of.

Welcome to the forum. Headaches can be a part of dysautonomia. I get episodes of headache that can last for days, but not an aura, or anything that suggests migraine. I've been told they are tension headaches. You can search for "migraine" on the forum to find past discussions. There have been a lot of past discussions on this topic. Here are a couple that may be helpful: https://www.dinet.org/forums/topic/27750-occipital-neuralgia-vs-migraine https://www.dinet.org/forums/topic/25786-horrible-migraine

Welcome to the forum. There have been past discussions about POTS and narcolepsy. You can do a search on the forum using the search tool, but here are a couple discussions that may be helpful: https://www.dinet.org/forums/topic/27153-pots-or-narcolepsy https://www.dinet.org/forums/topic/23444-diagnosed-with-narcolepsy https://www.dinet.org/forums/topic/12137-sleep-disorders

Yes this is very typical. I have had many days of feeling horrendous in the AM and quite normal in the evening, only to repeat that pattern the next day. One dr told me it is due to diurnal variations in cortisol which affects fluid retention. Many POTS patients arrange their schedules and lives so they are most active in the late afternoon and evening.

I took Prozac for a couple of years. I believe it may have helped with severe symptoms. However there is an adjustment period where some symptoms may worsen. Studies have found it is beneficial for some POTS patients. We have a little more information here: https://www.dinet.org/info/pots/pots-what-helps-r100/

I tried it once when I was having severe insomnia as well as a small POTS flare up. I did feel really great afterwards--super relaxed. I don't think it helped POTS or my insomnia. However, my guess is that acupuncture is most beneficial when practiced regularly -- it is not a treatment that would be expected to be effective after one session? I don't think there is any research that supports acupuncture as a treatment for POTS/dysautonomia. But it has been shown to be helpful for pain management. Let us know how it works for you.

That is great to hear--so glad you got through it OK. I tend to get a flare with any infection, even a common cold. So I expect to have a flare if I were to get sick with this. There is research indicating that there may be a relationship between infecting dose and the severity of illness. https://www.sciencedirect.com/science/article/pii/S1201971220304707 And wearing a mask may protect the wearer from larger doses. Less severe infections may be less likely to initiate a flare?

Our list of physicians is here https://www.dinet.org/physicians/

I assume you saw this: https://www.dinet.org/forums/topic/31200-statement-on-covid-19-and-cfsoi/ I think many of us are concerned about the unknowns regarding POTS and COVID-19. I think it is good your dr doesn't want you in a classroom. I would hope that any doctor would recommend against any patient being in a classroom without masks in the middle of a severe outbreak. People without any known underlying conditions are having serious complications, and it seems right now hard to predict. The CDC has a list of conditions that are known to make severe illness more likely as you probably know: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html Nothing like POTS is in this list but unfortunately until a lot more data is collected a full understanding doesn't exist. I think another concern is the long term impact of the virus. Since many of us have flare ups when we have any kind of inflammation, this virus is IMO likely to cause POTS flare up for many of us, and I worry for myself, it could be a long-lasting flare up, at the very least.

It's good your eye dr is trying to be careful. I've had my pupils dilated many times and it has not affected my POTS in any way. Everyone is different however. Hopefully you see a specialist and can talk to him/her about this concern.

IV fluids, salt tablets.

So sorry this happened. Hope you are feeling more stable now.

I have been going through a flare up and it has included neck pain and back pain. I have been feeling that the two issues must be related. My autonomic dysfunction has improved over 2 months, and the pain too, but I still have pain. I was told it is arthritis. PT was prescribed but I have not yet pursued that.

I agree with you and I was thinking this week that many of us with POTS who have experienced months of being homebound are probably better adjusted to this than many in the general public. We have learned to accept limitations and uncertainty in our lives whether for long stretches in the past, occasional flare ups, or our current situation. We may be faring better psychologically than many others for this reason. I think many of us are already taking measures to avoid illness too, so that is already second nature to us (washing hands, maintaining distance).

He is a pediatric specialist. However he does also have patients in their 20s, 30s and 40s.

Dear Members, Dr. Peter Rowe of Johns Hopkins University School of Medicine, has kindly answered some of our possible concerns regarding COVID-19 and CFS/OI. His statement can be found at this link:

When I have a severe bout with POTS I have this symptom. My head would literally bob up and down when I had severe POTS 17 years ago. I also remember a swaying motion when I would sit certain ways that would come and go. It was scary. I am not sure what causes it but I think just out of balance sympathetic activity.

I was told by my endocrinologist that cortisol levels bounce around all day depending on many factors. I had done a saliva test for cortisol at the time and it indicated my cortisol was high. There are specific ways to test for properly functioning cortisol response--I am not sure of the details. I would talk to her doctor or a specialist to get more understanding.