MomtoGiuliana

Could the sugar in the coke have been what dropped your bp? I have to say however that I have noticed more pronounced orthostatic hypotension after drinking coffee. I drink it black typically (and I am not a daily coffee drinker--maybe 1-2 times per week at most). Maybe it is something in coffee other than caffeine??

I am not sure if I fit into the hyper category. However when I am in a POTS flare I have high bp when standing and I get surges like you describe. The thing that helps me the most--which may seem counterintuitive, is extra salt and fluids, and IV fluids if possible. Otherwise, increasing my beta blocker dosage.

DINET maintains a list of physicians here. I see there are two listed as being in Pittsburgh. If you are able to travel there may be others you can consider on this list. https://www.dinet.org/physicians/

Does your hr change from sitting to standing, or do you feel faint or have worse symptoms on standing? Have you had a tilt table test? Can you have your general practitioner check your hr and bp sitting and standing, at least?

I tend to have low potassium. It is more likely when I am in a POTS flare. I am not really sure of the reason for this, my specialist told me slightly low potassium is an issue for some people. It can be exacerbated for some by taking too much salt (he told me) and encouraged me to be careful about over-doing salt intake, although an increase in salt intake is recommended for POTS patients (which is a little confusing). When I was at the ER the very first time for POTS I remember they asked me if I had been vomiting a lot bc my potassium was low. I had not had any intestinal upset at all! There have been past discussions about this on the forum. eg https://www.dinet.org/forums/topic/18019-low-potassium/ If you are taking florinef that can cause your kidneys to excrete potassium so it is important to eat potassium rich foods if on florinef. But if you are like me, you may need to make sure you are eating potassium rich foods regardless. Fruits and juices are particularly rich in potassium and can provide a quick infusion of potassium.

So sorry you are having such a hard time. Here is information about PAF that may be helpful: https://www.dinet.org/info/paf/ There is overlap of symptoms with these different conditions. Hope you can find a specialist who can diagnose and treat you properly.

The most important dietary change for me was added salt and fluids. When I was very sick with POTS I found I did better with small meals especially in the early part of the day. In general I think low sugar makes a difference for me too but not as significantly as increased fluid and salt. I would add that iron deficiency can exacerbate POTS so making sure your diet is sufficient with iron would be important. May not be an issue if you are eating meat. I am a vegetarian and have a little trouble keeping iron levels normal so I take a supplement typically. If B12 is low, that would be important to correct, as low B12 is implicated in causing or exacerbating POTS--it did for me.

Hope you get answers today. I would not hesitate going to the ER if these symptoms continue and you can't otherwise get prompt testing.

We've been maintaining an informal poll of DINET members. https://www.dinet.org/forums/topic/29054-poll-dinet-members/ 13% indicate a diagnosis after age 50.

So glad to see this and that you are feeling a little better.

Increased fluids and salt helped me with severe fatigue. Otherwise, just time. Over time I would get better. I've had multiple severe episodes of POTS--lasting from nearly a year, to a few weeks at a time.

I agree w Yogini. I used to (and still sometimes do) get lightheaded and feel like I am not getting enough breath with extended talking. I don't think it has anything to do (in my case) with anxiety/stress. I remember first noticing it happening when I was reading aloud to my infant.

My BP is typically more stable if I am well-hydrated. IV fluids 2 to 3 times per week helped me greatly, including erratic BP and HR, when I was in a very bad flare a year ago (when I am in a bad flare I have both high and low BP). Otherwise, I try to just stay well hydrated with drinking a lot of fluids. That said, with a severe situation, you may need more than fluids to address this.

There have been some past discussions on this. Here are two that may be helpful: https://www.dinet.org/forums/topic/29429-cooling-vests https://www.dinet.org/forums/topic/14953-cooling-vest-which-is-best

I get the flu shot nearly every year--for about 15 years. I have never noticed a correlation with POTS symptoms. That said I do wonder if some vaccination might have triggered POTS for me. I lived in Africa and prior to going and while there had a variety of vaccinations. It was during that time that I began to notice POTS symptoms (did not know what was going on until severe symptoms occurred 10 yrs later). I had very severe POTS reaction following B12 shots last year. My dr was stumped and felt it was a vasovagal reaction simply to having a shot. Seems really strange to me bc I have had so many other kinds of shots in my life with no reaction like that. I do think that a variety of triggers can bring on POTS, and it is certainly not well understood.

Thank you for sharing. That is great that you are feeling so much better. Hopefully you will continue to see improvements. I have also had recovery. I have had two periods of severe symptoms that were extremely disabling in my 30s and 40s, and both times recovered eventually quite well. I had all the symptoms you describe, as well as severe exhaustion that prevented me from leaving my bed or my home for months. For me, fluids were extremely important, and modest increases in salt intake. IV fluids helped me greatly in my 2nd bout.

There have been several past discussions about this. Here is one: https://www.dinet.org/forums/topic/29728-pots-treatment-center/

So sorry to see this. I have also "hit a wall" several times in my life, due to this condition, and had to take a great deal of sick leave and once had to leave work for nearly a year. I also make more than my self-employed husband does--some years a great deal more. I had short term disability insurance that helped slightly. It's good that you are looking into what options are available but so sorry you are feeling so poorly. Good your doctors are still doing testing, if standard treatments for dysautonomia are not helping. Sometimes it can take awhile, months or more, to recover, even with medications that are appropriate--in my experience and from what I have seen on the forum over the years. Take care.

That is interesting that you mention that your symptoms came on after taking two contraceptive pills. The same thing happened to me in my late 20s. Maybe it was coincidence, however, I seem to be very sensitive to hormonal changes. I also had severe POTS during pregnancy. I was not diagnosed with POTS until age 34 and post partum. Have you talked to a doctor about your concern about a blood clot? I also get symptoms of chest heaviness, which can change with position, and exercise intolerance and lightheadedness. The dry cough is concerning and I hope you can have these symptoms thoroughly checked out.

So sorry you had such severe and scary symptoms. The warm bath water may have contributed to blood pooling. I have had such symptoms and also gone to the ER--when I didn't have a diagnosis, and also a few times after my diagnosis (over the years). When symptoms are severe or something new comes up that is scary, I think it is a normal reaction to consider going to the ER. We can't advise you on the forum about when to go to the ER, except to share our experiences. I would say that if possible you should try to reach your doctor to get a verdict as to when to go to the ER. Although typically for liability reasons they will likely advise that you do so, if you are having symptoms that mimic heart attack, stroke, etc. I know once or twice when I had very severe symptoms my husband called 911 and paramedics checked my vital signs at home. Although I felt dizzy, weak and unstable my oxygen, pulse (lying down) and bp were OK, so I opted to stay home. The tingling you describe I have had as well with events like this. This could be caused by hyperventilation. Did you mention this symptom while at the hospital? It may be helpful to maintain a diary of symptoms. Hope you can rest well tonight.

And I would add that perhaps a third option is that severe symptoms will come and go throughout your life--not sure if that is the same thing as "chronic" exactly. I have had two severe episodes in my life, which caused me to be disabled. Both times, I improved within months to being functional and eventually exercising again. My symptoms are mostly mild, most of the time otherwise.

Yes. It became more severe when I had a relapse last year and was diagnosed with low B12. Taking B12 supplements over months may have improved it, or maybe it is a symptom of POTS. For me it did improve as my other POTS symptoms improved. These days I do experience it, but it's very mild.

I also get a dizzy odd feeling in my head when lying flat, at times. Even if my other POTS symptoms are minimized.

So cute. Thanks for sharing!

Thank you. And thank you to Edriscoll for all that you do for the forum and the website, and the organization. It's a huge job -- you are the glue that keeps it all together and functioning!