MomtoGiuliana

The definition of "natural" can be a bit ambiguous. But some POTS patients treat their symptoms effectively only with extra salt, fluids and compression. Many others tho do need prescription medications, at least during flare ups, if not consistently. I think what should be considered is whether a treatment is evidence-based--do we know from studies that the treatment is safe and effective? DINET promotes the use of evidence-based medicine (obviously, working with your doctor to do so.). Here is a list of evidence-based treatments that may be helpful. Many are pharmacological but some would fit under the category of "natural":

Welcome to the forum. There is one CO dr listed in our physician list: Physicians - Dysautonomia Information Network (DINET) I am surprised there is only one listed. Likely there are more we just don't have in the list. I would look for an electrophysiologist--as a way to narrow down what cardiologists may be familiar with treating dysautonomia.

@PistolYes I had a cystoscopy. All normal. That is what the urologist insisted on and insisted that was the problem. My intuition was that it was not the problem. Anyway, I was right...and still no answers. GP, urologist, nephrologist, ob'gyn all stumped. Fortunately it has never lasted longer than a few weeks at a time. But it's scary and can be excruciatingly painful.

Yes this has been my experience as well. I would be told I had an infection they would start me on antibiotics. Then would say I had no infection as the culture didn't indicate anything. This has happened to me with almost any severe POTS flare up. And on some occasions I would have blood in my urine. The last flare up--over two years ago--it was the most severe ever. I was admitted to the hospital as they said I had a kidney infection. But then a day later said it was not a kidney infection. The pain was intense--I really thought I had a kidney stone and they missed it, but I had ultrasound and other imagery and claimed they saw nothing unusual. I had so many tests and all came back normal. I am interested her experience is similar bc I have not met many people who have experienced this with POTS. The only diagnosis I came up with was LPHS. I have read it can coincide with POTS. It's (of course) not well understood and many drs not aware of it. Anyway at this point it's all a mystery for me--and fortunately I have not experienced it again for over 2 years.

Welcome to the forum. I am glad she is getting better. Dysautonomia can include so many symptoms and unfortunately can be "idiopathic". However I am interested that you mention flank pain bc the same thing has happened to me during POTS flare ups. The last flare up I had the pain was so severe I needed to take strong pain relief. It felt just like a kidney stone (which I have had) but according to doctors I did not have a kidney stone. I even had blood in my urine. But nothing was ever diagnosed. Eventually the symptoms receded. Many tests and all came back normal. I was found to have low B12 and I do feel better I think on oral B12 supplement. She may eventually be able to wean off the meds. Many of us have periods of remission and they can be quite long. I have gone years at a time without significant symptoms. What helps me the most when I am in a flare is IV fluids, drinking fluids, extra salt, low dose beta blocker, small meals, avoiding hot showers especially in the AM,

I developed severe POTS during pregnancy and it became actually worse post partum. It took months to get a diagnosis. What helped me was IV fluids, drinking a lot of fluids, salt, compression, and a low dose beta blocker. In addition, smaller meals higher in protein. Showering at night as my symptoms were worse in the AM and a warm shower would trigger even worse symptoms. Also I suggest that you try not to spend a lot of time during the day lying down as that can end up exacerbating symptoms (if it is POTS). Even sitting up would be better. I found I became a bit deconditioned and have learned that from subsequent flare ups. Hope you feel better soon.

Welcome to the forum. That seems very uncomfortable and I am sorry you don't have answers. It's reassuring you have had many tests to rule out serious problems. There have been past discussions about bounding pulse however may not be what you are experiencing: Bounding Pulse Everywhere? - Dysautonomia Discussion - Dysautonomia Information Network (DINET) Bounding Pulse - Dysautonomia Discussion - Dysautonomia Information Network (DINET)

Welcome to the forum. Being a caregiver to someone with a chronic condition can be physically and mentally exhausting. We don't have many caregivers very active on the forum but there are a few who come by from time to time. Yes many patients experience the lack of understanding you are describing. That is an added burden for them and also for you the caregiver. We do have this resource that may be helpful if you are trying to help someone understand. https://www.dinet.org/content/information-resources/pots/understanding-dysautonomia-a-guide-for-family-friends-r153/ I hope your daughter is able to find treatment that can help her to feel better and more stable. Many of us here experience flare ups like you are describing.

Welcome to the forum. Sorry you are having so many difficulties and not good answers. This may be helpful to you:

No. I am still feeling quite well and menopause if anything has brought improvements for me so far. However, I was lucky enough to go through a gentle menopause--no hysterectomy etc--my cycles just petered out on their own. I imagine having your ovaries removed would be a big adjustment for your body. So sorry you are in a bad relapse. I think from what I have seen on the forum and read anyway that for many women symptoms improve after menopause. But perimenopause can be difficult. If you just had your ovaries removed it makes sense unfortunately that you are experiencing a flare up. I hope once your body adjusts that you will have a big improvement.

Thank you for sharing. I agree more research is needed. It does say " Notwithstanding the probable low incidence of POTS after COVID-19 vaccination, particularly when compared to SARS-Cov-2 post-infection odds, which were five times higher," This article may be helpful too: https://www.cedars-sinai.org/newsroom/covid-infection-vaccination-linked-to-heart-condition/

Thank you for sharing. Glad you are doing better since the procedure.

There have been some past posts about this diagnosis https://www.dinet.org/forums/topic/24384-optic-neuritis-iv-steroids-no-new-dx-me-at-the-end-of-my-rope/#comment-228175 https://www.dinet.org/forums/topic/23705-vision-loss/#comment-221420

I think what Pistol already provided is super helpful. We do have this resource as well.

Oh no, so sorry about this flare up.

Some of us see immediate symptom improvement on a very low carb/low glycemic diet. I know when I was initially very unwell my dr recommended small meals, plenty of fluids with the meal and foods on low glycemic index. This seems to reduce problems with tachycardia and fatigue and other symptoms after eating, for me. I would suggest tho that whatever is wrong, there may not be one answer unfortunately. I hope her general practitioner and endocrinologist can help soon to determine what tests should be done and other specialists seen. I agree with what others have said here too about communication with doctors. This is a practiced art in itself and very challenging when undiagnosed and experiencing so many symptoms. It's helpful to prioritize the most troublesome problems and to laser focus on those. In my experience, I have heard doctors say things like "if everything is wrong, nothing is", throw up their hands and offer anti-depressant. Keeping a diary of symptoms and diet and other factors is definitely helpful as her doctors sort through this.

Electrophysiologist. This is a cardiologist who specializes in heart rhythm abnormalities. They often diagnose and treat POTS and other forms of dysautonomia.

You said you don't want to start a medication to control her hr without first understanding why it is so high. I haven't followed all of your posts--has she been seen by an EP? I agree w above that IV saline is more valuable when administered slowly, in my experience. Usually tho (with POTS) it should provide some improvement in symptoms even if small and temporary. (Might still feel poorly but maybe not quite as poorly.)

Yes definitely. When I am in a flare my hr can be in 90s and above lying down.

Showering is a significant trigger for many of us. When my POTS was severe or I am in a flare my hr can get this high basically doing "nothing". Showering is a trigger bc the warm water causes vasodilation. That combined with standing or even sitting and putting arms overhead is enough to trigger a big hr increase. I used to feel so badly after showers I would have to lie down to recover for 15 min or more. When I moved showers to night instead of morning it was easier. At night I think we tend to be better hydrated, not sure if there are diurnal hormone shifts that also play a role. Does she tend to feel better later in the day?

Members may find it helpful to watch our advisor Dr. Blitshteyn's video about COVID and how it can affect dysautonomia patients. https://www.youtube.com/watch?v=JI_c95dvg0w She explains the science behind DINET's decision to recommend vaccination regardless of possible side effects unless specifically advised against it by your personal physician.

My first experience with dysautonomia was a severe episode that lasted over a year. After that I got better but since then I have had relapses, "flares" that last a week to 6 weeks at a time. Some people do have constant symptoms lasting years some have intermittent symptoms but most do get better with effective treatment. Every person's experience seems to be unique -- based on the wide range of experiences I have seen on this forum over the years. In some cases people are able to determine a cause or a trigger and treatment of that can relieve the dysautonomia. Unfortunately for many people this process can be long. Having a good specialist and good GP can really help. The support of a caregiver is so important too. So she is lucky to have you!

I also experience myoclonic jerks when falling asleep when in a flare up. I suspect this is common. So sorry that is added to her long list of symptoms. It can interfere with good sleep. I would not assume the salt and potassium is "not working" bc there isn't a turn around in BP or HR within a day. In my experience salt and fluids support improvement but if I am in a very bad flare, the improvement doesn't come about within a day. Very bad flares for me can last for weeks. Compression hose is very helpful. Also if she is lying down most of the time that actually could be exacerbating symptoms after awhile because of deconditioning. It's very hard when you feel so badly, but unless a doctor has said otherwise, trying to get some movement in or trying to be upright some of every hour you are not sleeping should be beneficial. One book that helped me when I was in a severe flare years ago was the book Spontaneous Healing by Dr. Andrew Weil. Besides just being a very hopeful book about the power of the body to heal, he offers some suggestions such as some breathing exercises that I found helpful. Coping with a chronic illness is very hard. For some of us the anxiety that comes along with dysautonomia can be challenging to cope with. It was at times for me.

I've had all the shots and boosters possible (Moderna). No problems (other than the standard side effects for about a day) and so far no COVID infection. Best to follow your dr's recommendations. Good that you are basically protected from severe outcomes with initial vaccination.

My dr warned me not to over-do salt. He was never clear about how much to take but he said to salt liberally (as well as drink fluids regularly). I did take salt tablets also, years ago, for awhile, when symptoms were severe. Typically I put salt in drinks and food now when in a flare. One reason not to over-do salt is that it can result in lowered potassium according to my dr. And I seem to be susceptible to that anyway. When my potassium goes even a bit low I typically feel worse, including more heart palpitations. I use coconut water also, which is rich in potassium. We always recommend that patients consult their doctors regarding medications and diet, including salt. Members can of course share what treatment they use and what works for them, but members cannot advise other members.