Pistol

@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.

@kel15 are you sure you are supposed to only take 30 mg once a day? The short-acting 30 mg usually is taken twice daily. --- I hope it works as good for you as it does for me 😉!

@Aghast - I have the same symptoms ( I have HPOTS ) and your theory sounds pretty accurate. I experience both high's and lows in BP, both caused initially by pooling. When there is sympathetic overcompensation following the pooling I will have peripheral vasoconstriction causing cold and blue hands and feet, chest pain ( constriction of the coronary arteries, also called Prinzmetal angina ) and slurred speech, brainfog etc due to inadequate circulation of the brain from constriction. I too respond well to IV fluids. What also has helped are Carvelidol ( Betablocker ) and Diltiazem, a CCB that dilates blood vessels. The vasoconstriction used to be so bad that I took seizures from lack of cerebral circulation but thankfully between the meds and frequent IV fluids ( I have a port ) they barely happen anymore. Definitely vasodilators can help for these issues, you may discuss this with your physician. Also increasing fluid intake is a must! Personally I have to avoid compression hose b/c of the peripheral vasoconstriction.

@kel15 - I take Diltiazem for POTS, and it has helped immensely! I have HPOTS and often run both high BP and HR. Other times I pass out and have low BP. I take the CCB along with a BB ( Carvelidol ). With the Diltiazem I started years ago at the very lowest dose: 30 mg twice a day. Once I realized I tolerated it we increased slowly and I ended up on 240 mg of the XL dose. Now I can decrease to 180 mg during the warmer weather months and only take the 240 mg in the winter. My vessels both dilate AND constrict, so in the cold I seem to have more vasoconstriction and in the summer more dilation. I would not be afraid to try the CCB, but start at a low dose and keep an eye on your BP. For me I feel great when I have a low BP but worse when my BP goes up. So even if my BP is 90/50 I still take my meds, and the syncopal episodes have decreased on the CCB. ( Although from what medicine teaches it should drop more yet on CCB - for me it stabilizes ).

My daughter just informed me that a friend of hers ( highschool junior ) had her second shot and had a reaction that sounds like POTS. She could not get up out of bed without her heart racing, getting dizzy and she felt extremely achy and fatigued. She never had felt like that before, ever! Luckily it only lasted 2 days and she was fine. Still - I was surprised about the POTS-like symptoms!

@Knellie - you can get enough potassium and magnesium from a healthy diet, especially bananas, I eat one every single day. In the way of supplements dysautonomia patients have to be careful - we are usually extremely sensitive to meds, even supplements. What many dys-sufferers seem to lack, however, are Vit D, Vit B12 and Ferritin. I was low in all three at the onset of my illness and supplementing the deficiencies has helped with energy and fatigue. Another supplement I take regularly and tolerate well is Turmeric, I cannot take many NSAIDS but have a lot of issues with inflammation. Turmeric works really well for me for joint pains etc. I cannot take Steroids for arthritic flares, so it works well for that. And for digestion I drink ginger tea as well as chamomile tea for sleep.

Hello @NReed2000 - welcome to this forum! -- I am sorry that your husband has such a bad reaction from the shot. You mention he has had dysautonomia symptoms for years - what symptoms has he had? And which symptoms does he have now, after the vaccine? Unfortunately almost every dysautonomia seems to have to go through this - the docs don;t believe that our symptoms are real. It is easier for them to go with what they learned in school: if a patient complains of symptoms you cannot see or prove with labs etc then he/she must be making it up. Very difficult when we suffer from what is called a invisible illness! --- The best way to get a diagnosis for dysautonomia is to see a knowledgeable cardiologist or neurologist, depending on the symptoms and what type of dysautonomia he feels he has ( POTS, NCS, OH, MSA .... ) If his symptoms get worse when standing up he should ask for a Tilt table test. This is usually performed by a cardiologist. Since he is suffering from Diabetes Type 1 he might be affected by a type of neuropathy that can cause dysautonomia symptoms. In that case he of course should see a neurologist. If he has symptoms of POTS - is he drinking a lot of water and increasing his salt? I am not sure if he should wear compression hose with the diabetes - you may have to ask the doctor about that. I hope you guys find some knowledgeable and compassionate doctors, and I hope that he gets over "the hump" soon! This forum is a good place to ask questions regadring dysautonomia - there are many people here that can share experiences.

My flares usually last only a few weeks. I am lucky since I have a port and get home infusions, so I can get extra IV's whenever I flare, and that cuts them short. Before the IV fluids I lived pretty much in a constant flare. The Prednisone flare lasted a few weeks.