Pistol

Yes @lattegirl - this used to happen to me frequently, usually followed by syncope. When I was still working I had no choice to keep going when I hit my limit and often became presyncopal or fainted, this was often described by bystanders that I stopped doing whatever I was doing, had a blank stare and blue lips as well as a white triangle around my mouth - in 90% of the cases I would either pass out or have an autonomic seizure. This happened tons of time at work, so there were always witnesses. After and during an episode I always have slurred speech and talk jibberish - this is due to no circulation to the brain. Since this happened during a workout I would say you probably are doing more than you should - I would hold off on the gym and stick to light exercises!!!!

@erinlia - I experience many of your symptoms. I was diagnosed with HPOTS in 2012, after 3 years of suffering all of the symptoms of POTS including syncope and autonomic seizures ( caused by loss of circulation to the brain by sudden and severe constriction of vessels ). I also have Reynaud's and Prinzmetal angina - all caused by spasms of the blood vessels. I also have NCS, which causes syncope from excessive DILATION of vessels. In my case it depends on which way the sympathetic NS reacts - if withdrawal then my vessels relax and I have tachycardia and low BP and pass out or if excessive sympathetic overcompensation the vessels spasm and I have tachycardia and high BP until I eventually go into a seizure. Obviously this scenario is quite difficult to treat, since I have BOTH high and low BP, BOTH vasoconstriction and vasodilation. What has been successful for me is a betablocker with both beta- and alpha-blocking properties ( Carvelidol ) for HR and BP control, a calcium channel blocker that provides vasodilation ( Diltiazem ) and IV fluids ( I have a port and get home infusions ). Since I "swing both ways" in the way of blood vessels constriction the fluids help keep the overall tone of the vessels steady by preventing them from constricting or dilating too much, both by providing a steady pressure inside and by giving a volume boost. I was always unable to get the same effect from drinking alone, and since the IV fluids ( 3 years ago ) I have been so much better! They also have helped me with fatigue and sleep. I take a very low dose of Ritalin in the am, and that gives me enough of an energy boost that I can complete a few tasks before 11 am. I too cannot use compression hose due to the Reynauds. That is a shame b/c I think they would help. Since you have Reynauds meds that cause vasoconstriction, like Fludrocortisone and Midodrine, may not be right for you. I could not tolerate any meds that cause constriction but - as I already said - do well with vasodilators. Having said all of that - I still have to do all of the preventative measures you take now, but I feel better and no longer pass out or have seizures. I hope they will find the right meds for you. Have you been back to see Dr Grubb?

I agree with what everyone else has been saying: a cardiologist not trained or educated in POTS care may make things worse simply by dismissing your symptoms ( due to blissful ignorance ). I myself saw 5 cardiologists with different levels of (mis)understanding of POTS - the best one said if I had POTS he wouldn't know how to help me, the worst one called me hysterical ( I have HPOTS and apparently he could not make heads or tails out of my TTT ). So - no, a cardiologist may know less about dysautonomia than a good PCP ( that was and is the case with my own PCP ).

@Goldfish - it can be caused by POTS but it also can be caused by underlying inflammation or viral infections. Many people have ongoing problems after certain viral infections such as Mono, Flu etc. These days of course there is the possibility of a previous COVID infection. Sometimes viral complications can be seen in blood work and sometimes they cannot. Low-grade fevers such as you describe can have immune causes. The fact that you get sick often is also indicative that there is an immune problem, not necessarily auto-immune in nature. It may be a good idea to see an immunologist or rheumatologist, they are most knowledgeable in this area. There is also a chance that you may suffer from allergies - have you ever been checked for them? If your body is constantly fighting allergens it can cause ALL of the symptoms you experience.

Hello @Goldfish - welcome to this forum!!! I am so sorry to hear about your problems, and at such a young age! But be assured that MANY young people with POTS have a almost complete recovery and enjoy a healthy life. --- The fact that your HR jumps up and then goes back down is not indicative of POTS, but all your other symptoms are. Normally a Tilt Table Test is used to diagnose POTS, which is done by a cardiologist. The recommendations your PCP gave you are appropriate, and I hope you follow them. Do you see ANY improvement with them? If they do not help you enough you might want to see a cardiologist for further investigation. As to career path - I know this stressful time of decision making all too well, since my daughter is also 16. Be assured - there is no reason not to pursue what you want at this time! There are many more treatment options available, so just hang on! If necessary you can take a year off between school and college ( or whatever career you want to pursue ). I know several young ladies with POTS that either are at college now or have recently graduated, with all different types of degrees. Even areas that require physical involvement, such as Nurses and Physical Therapists! I think it is best to approach your future as you would without POTS, since there is a greater chance for you to improve ( especially since you have not yet been evaluated or treated by a specialist ) than there is for you to stay symptomatic. As I said: there are many POTS sufferers that completed schooling of their choice even WITH POTS! This question is best answered by a specialist. There is a list of physicians knowledgeable in POTS on this website ( under the physician tab ), and increasingly pediatric cardiologists are becoming aware of POTS. It may be a good idea to make an appointment with a pediatric cardiologist at a major hospital center near you. Don't worry - many teens are able to recover with proper treatment!

Caffeine is a stimulant and commonly causes palpitations in many people.

I took Prednisone ( 60 mg to 10 mg over 6 days ) twice for joint pains. My autonomic specialist always told me that I could not take it b/c of my POTS, and he was right 😒. I did OK while I was on it but stopping it caused one of the most horrible flares, with high BP etc. The second time we weaned slower - instead of stopping at 10 mg I took 1 mg less every day. I still had the same flare - so I was told not to take steroids at all unless it's an emergency.

@JFB - yes, I agree with @p8d. I hve been on Plaquenil for 5 months now and have seen a definite improvement of joint pains and fatigue!!!!

Hello @POTSie78 - yes, the unfortunate scenario you describe rings a bell for many of us! i too had to struggle staying employed and ended up using up all of my FMLA. I was absolutely devastated when I was told by my employer, my doc and my family that I had to stop working. I was the bread winner of the family, and without my job we would all end up without insurance and income! But it worked out, as things tend to do, and I was lucky - I had short term and long term disability insurance that paid 60 % of my pay. I agree with @toomanyproblems - our symptoms wax and wane. I was completely unable to do anything until I found proper treatment, including IV fluids via my port. I am still disabled but now am a lot more stable. You too can find a lot more stability and relief from many symptoms once you are on the right meds. Be patient - hang in there until your appointment - it WILL get better!

@MTRJ75 - Autonomic Dysfunction is essentially the same term as Dysautonomia, meaning abnormal ANS. Autonomic neuropathy is ONE condition that causes autonomic dysfunction. So as far as I know they are NOT the same thing. But a specialist may disagree with that.

@MTRJ75 - CAN ( cardiac autonomic neuropathy ) is ONE cause of dysautonomia, and can include POTS. It is commonly caused by Diabetes, and blood glucose level control can stop the progression of the disease. Neuropathy is a common complication of Diabetes. The following website had this to say: Cardiac Autonomic Neuropathy | AutonomicDysfunction.com " In a review of several epidemiological studies among individuals with diabetes, the 5-year mortality rate is five times higher for individuals with cardiac autonomic neuropathy than for individuals without CAN. The stronger association observed in studies defining cardiovascular autonomic neuropathy by the presence of two or more abnormalities may be due to more severe autonomic dysfunction in these patients or a higher frequency of other co-morbid complications that contributed to their higher mortality risk. "

@MTRJ75 - Congratulations! Yes - I too found that they ( the SSI people ) don;t have a clue what to do with dysautonomia. Can you blame them - if even the medical community has no clue? I had an in-person hearing with a judge that initially was quite skeptical, but once I explained the symptoms and the reality of POTS he approved me fully on the spot. I think what they don;t understand is that we are unable to follow any schedule, since our symptoms pretty much dictate our schedules 😒. I have found - from other posts on this forum - that psychiatrists can be quite helpful in diagnosing dysautonomia, simply by ruling out psychiatric causes. They can see the difference between anxiety/depression/somatic disorder vs a true physical reason for the same symptoms. I was evaluated extensively twice by a neuro-psychologist ( for cognitive decline from POTS ) and both times she was adamant that the symptoms were physical rather than psychological, and that the anxiety/nervousness was a result of the illness rather than the reason. Huh! I admire your determination!

@Jyoti The Relationship Between Potassium and Sodium | Livestrong.com

@POTSie78 - that is what happened to me as well, I ended up using up all of my FMLA waiting for treatment. Hopefully this will not be the case for you 🥺! At least you can have hope that the Mayo doc will be able to help you! Best of luck!!!! Please keep us updated!

@POTSie78 - yup, I have been in your shoes many times before! In my case I have both high and low BP. When my blood vessels dilate suddenly I pass out, and when I come to I am drunk-like - slurred speech, am in a fog, sluggish. When my vessels constrict suddenly I will have chest pain, a "blank" feeling and then I have seizures. They last anywhere from 15 seconds to a minute. Afterwards I am groggy and sleepy but the BP is usually down. For me it seems that both - syncope and seizures - act somewhat as a reset and I am better for a little while. The crawling is also something that I experience - but normally just BEFORE the episodes. It is pretty clear that you are unstable in your symptoms and need to be better controlled on meds. I always benefitted greatly from a few bags of IV fluids over a day - not infused quickly but rather over several hours. The added volume seems to create enough steady pressure within the vessels to counteract the ANS from responding inappropriately. I used to literrally CRAWL into the hospital after seizures or syncope, unable to talk right or think straight or walk ... and after a few hours I was talking, laughing, on the phone, walking to the bathroom - and the next day I would leave the hospital skipping and hopping. It is truly a miracle when you see it! Unfortunately I ended up in the hospital every 6-8 weeks, so my doctors agreed to a port and now I get infusions at home, at least once a week but more if needed. I have had NO seizures or faints this year at all, and last year only twice, due to triggers ( Prednisone and illness ). Depending on what country you are from your doc might consider IV fluids for you, just to bring you out of the slump. I used to also get them as an Outpatient in an infusion center, 1-2 bags weekly during flares. My autonomic specialist gave me a standing order and I just went in for the fluids whenever I was bad. Also - since you are newly diagnosed you are most-likely not yet well controlled on medications. There is no ONE med that helps everyone - it is usually a combination of meds that helps. It took me years after diagnosis to find the right combination, and I had to try many that did not work. A TTT often clues us in as to what exactly happens during these episodes, and with that there are treatment possibilities. The docs need to determine if you vasodilate or vasoconstrict - that is a big clue as to what meds could help you. However - in my case I do both, and IV fluids help for both. I know it is frustrating and scary to go through this, and it is frustrating for both you and your doctor ( not to mention your family ) when medications don;t help. But have hope - as long as you keep trying new meds you will find what helps. Hang in there!!!!!

If it wasn't so sad this would be funny - ...

@Jyoti - have you compared the ingredient in both products? I guess whatever is higher in the Normalyte could be the culprit?

@CaveGirl - it could be a vasovagal reflex. When you walk uphill or into the wind you likely change your breathing - or even hold your breath without knowing. You might strain as well. Both of these things ( breath holding and straining ) can trigger the vasovagal reflex, which is a normal reflex that slows our HR. Try to strain as if you are having a bowel movement or as if you are blowing a balloon - you will see your HR drop.

I don't have pseudo seizures, I have autonomic seizures - also called hypoxic seizures. They are caused by cerebral hypoxia from excessive vasoconstriction, as shown on longterm EEG with telemetry. And no - I RARELY ever have them anymore, thanks to IV fluids!!!!!

@Aghast - I used to wonder the same thing. For me the hypoxia got so bad that I took seizures, so I was concerned about permanent damage. But the neurologist I was referred to ( and confirmed autonomic seizures ) said that it does not cause permanent damage. The seizures are caused by COMPLETE loss of circulation and don;t last long enought to cause permanent damage, and during the times of slurred speech etc the brain still receives enough oxygen ( although obviously less than optimal ).

@CaveGirl - a 48 hour monitor is not long enough to catch these episodes. I would ask your doc for a 30 day monitor, since the episodes continue and you have noted that it is accompanied by changes in heart rate, I had at least 3 30-day monitors that did not show anything other than tachycardia, at that point my autonomic specialist inserted a implanted loop recorder, which is good for 3 years and sends the episodes directly to the cardiologist. 48 hours is simply not reliable to determine of you have an arrhythmia!!! Any symptomatic episodes like you experience warrant longer monitoring.

@CaveGirl - these symptoms do not sound like dysautonomia but rather like an arrhythmia that causes bradycardia ( slow heart beat ). Have you been evaluated by an Electrophysiologist? A heart monitor can shed some light on this. Even if you had one before and it not did not show anything it is possible it just was not caught before. Although it sounds like it happens often enough that a 30 day monitor should catch these episodes. Depending on the results a pace maker COULD be indicated. In some cases restoring normal heart rate can improve the blood pressure as well. Talk to your cardiologist - what you describe sounds like you might be suffering from symptomatic bradycardia. I don;t know what meds you take - if any. Some medications can cause a slow HR as well.

@Aghast the symptoms you describe are actually very common POTS symptoms. They are all part of brain fog, which is caused by not enough blood reaching the brain. This can in some people lead to syncope, but does not have to. There are many posts dealing with brain fog on this forum, you might find a search helpful. I used to get these symptoms often, but now thankfully much less ( I am controlled on my medications, including weekly IV fluids ). I would not be able to find the right words, slurr them or replace them with wrong words ( this can get quite funny!!! ). What has been helpful for brain fog for me is SSRI ( I take Lexapro ) and Ritalin, but also Beta blocker and Calcium Channel blocker. The latter may not be for everyone since it is a vasodilator. Depending on the type of POTS you have the lack of circulation can be caused by dilation OR constriction of the blood vessels, so the medications can be very different. As long as you are not medically controlled for the symptoms and adequate circulation is not restored the only thing that helped me is rest. Unfortunately this symptoms has landed some of us in bed - and bed rest makes EVERYTHING worse. POTS is not ONLY about tachycardia when standing!! Talk to your doctor about this being a symptom of POTS. Once the brain circulation is restored with medications the symptoms usually disappears - or only returns with flares. Here is one post about this from our forum search, but there are many more: Slurring Words a Precursor POTS flareups? - Dysautonomia Discussion - Dysautonomia Information Network (DINET) Also - loss of balance, as you mention, is also a symptoms of POTS, with or without dizziness. It ican be caused by cerebral circulation changes as well.

@POTSie78 - I have never heard of POTS causing any type of skin reaction such as you describe. I think it might be unrelated. Have you seen a dermatologist?

@ramakentesh - the only side effect I experience from Diltiazem is brief moments of headrush when I stand up too fast from squatting ( this only happens when I am gardening ). I do have low BP now ( 90/50 ), but this is actually what I had all of my life until I got POTS, and I feel great with a low BP like that. I rarely ever experience high BP or even fluctuating BP anymore, and no longer faint or take seizures.