Pistol

This is where we could see the pattern for me, with the my chart! I can go back and see exactly when the IV was given and the before and after labwork. One doctor started me on oral potassium as a result of the infusions, and another time a different physician said that I do not need to take supplements because of the dilution, only a follow-up electrolyte panel ( which always turns out to be normal a few days after infusions. )

@MomtoGiuliana just a thought - you mentioned that you also benefit from IV fluids for symptom flares. If the blood work gets drawn after the fluids were given it can "dilute" the blood to show an electrolyte imbalance when there really is not one. This has happened to me several times when in hospital - they gave me fluids and checked the electrolytes the next morning ( or same day after the infusion ) and the potassium level was low. Sometimes they would order potassium supplements for this.

Hello @maggiez, welcome to this forum. I am so sorry that you have to go through this! Is it possible that you have hyperadrenergic POTS? The symptoms you describe that started after Florinef sound exactly like HPOTS symptoms ( I have it, so I know what that is like 😒). Also - if you have the hyperadrenergic type then Florinef is essentially contraindicated, hence maybe the strong reaction? The best tip I can give you is to try to avoid complete bedrest at all cost, no matter how hard it is to get going. Bedrest causes deconditioning which causes POTS to worsen. So - when in such a state that getting up is nearly impossible I do abdominal and leg-strengthening exercises in bed, I try to sit up at least twice each hour and as soon as I can I start to get up and move. Drinking is important, but in my case the thing that helps most when in such a state are IV fluids. They help regulate the cardiovascular system by maintaining even pressure within the vessels as well as increasing your blood volume - both essential in treatment of POTS. Do you have a PCP or cardiologist who can give you an order for some? My doctor used to give me a standing prescription that - when needed - I could take to an urgent care clinic or Infusion center to get the IVs. When I was unable to get them I would go to the ER and they would infuse me. In a case like yours an ER visit would be appropriate as last resort, because it is difficult to get through this and IV fluids can turn it around in an instant. Also - have you contacted the physician that ordered the Florinef? Hang in there, call you doctor and be hopeful!

@Sarah Tee I am so sorry! I want to let you know that a counselor can be extremely helpful in cases of emotional problems from chronic illness. When I became disabled ( after fighting for years to keep working despite passing out and having seizures at work all the time ) I sank into a deep depression. I felt useless and was full of self-pity. With the support of my wonderful PCP, family and friends as well as a counselor I regained my joy for life and my self worth. Becoming chronically disabled leads to all the stages of grief - and we all deal with grief differently. We have videos about this on our you tube channel, you may want to visit this. I also posting a link for information about NCS, since you mention having more episodes. I have NCS in addition to POTS and know how horrible it is to experience these episodes. https://www.dinet.org/info/ncs/ Be careful, and lie down as soon as your feel foggy - no matter where you are! https://www.dinet.org/info/ncs/

@MikeO maybe you need to go to a tanning bed? Or else six weeks in the bahamas? Or at least florida?

I do not absorb oral or sublingual B12, and my levels are low when I do not substitute. I have been getting B12 shots for years and now my levels are great. Vit D usually gets given as a booster dose for a few weeks and then 2000 a day as maintenance

@Neomorph It is my understanding that with EDS there is too much collagen in the joints ( hence the hypermobility ) and blood vessel walls ( preventing the vessels from constricting properly ) In order to attempt to pump enough blood to the vital organs the ANS signals for the heart to pump faster = POTS. Since even with this compensation there often is still a lack of blood reaching the brain there commonly will be symptoms of cerebral hypoperfusion = brain fog, FATIGUE, etc.

Urrrrrrrrg! Sorry about that, that is so ignorant!

@Jas autonomic neuropathy is often caused by diabetes and yes - it CAN cause heart failure. Here is an article describing it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5763036/#:~:text=Cardiac autonomic neuropathy (CAN) is,increased risk of cardiovascular mortality. Cardiac autonomic neuropathy and dysautonomia are not the same thing. Dysautonomia is the dysfunction of the ANS, which can have several causes. Autonomic neuropathy can be the CAUSE of dysautonomia, but there are other causes. For example there is neuropathic POTS, hypovolemic POTS and hyperadrenergic POTS ( among other types ).

Does controlling the Remote for the TV count as exercise?

my ejection fraction is dropping a bit, I suspect dysautonomia. Dear @Jas - as far as I know there is not yet a known connection between heart failure and dysautonomia. The two conditions are usually diagnosed by different testing - dysautonomia tested by HR and BP readings as well as accompanying symptoms, and heart failure often gets diagnosed by determining the actual heart function - with ECG, Echocardiogram, measuring the actual output of the heart ( EF ) etc. One is caused by a poor heart muscle and the other is caused by a malfunction of communication between brain, nerves and cardio-vascular system. It may be a good idea to see a cardiologist who can determine if you have heart failure - if you do it would be rare to be caused by dysautonomia.

@MikeO try to get away from numbers and go by how you experience your body ( how you FEEL ). Numbers - in our case - are simply data collected before and after, not WHILE it happens. The symptoms before we have an episode are only apparent to US, therefore it is US that need to respond ASAP. I hope you know what I am trying to convey ..?

@MikeO I have neuro-cardiogenic syncope from sudden drop in BP and HR ( following a period of tachycardia and hypertension ) as caught on TTT and ILR. I also have glucose intolerance causing periods of severe hypog;ycemia, meaning eating something rich in sugar will spike insulin and then -, once the food is digested, usually 1 1/2 hour after eating - my sugar bottoms out, causing severe hypoglycemia. I have passed out from both scenarios, although I can tell the difference and also see that the sugar-low comes on slower than the syncope. The biggest difference I see between the two symptoms is that when my BS drops I get clammy ( especially on my upper lip ), very weak , shaky and hungry. juice and a protein rich snack helps fast. When I get the circulation-related presyncope it comes on fast, my hands and feet get ice cold and I begin to have tremors ( but entire different than the low sugar shakes ). I barely ever experience hypoglycemia anymore since i have adjusted my diet and follow a six-feedings-a-day regimen. So - in your case I can see it will be difficult to determine what is causing your syncope unless you can tell the difference between the two based on how you FEEL. And it is crucial to respond quickly when you feel unbalanced or in any way symptomatic. As always - we can be our best advocates and healers if we learn to LISTEN to our bodies. Our symptoms are usually a warning sign that something is wrong.

@Neomorph Your PCP is right - A diagnosis of hEDS would not change the treatment or prognosis of the POTS diagnosis. It in itself is not a treatable "condition", so simply knowing you have it would not be of value to you other than having an explanation as to the possible cause of your POTS. It could simply explain the mechanism behind the symptoms. As to your GI issues - what you describe sounds like what many members of this forum struggle with, including myself. Since the ANS also controls the GI tract these types of symptoms are common. Some here experience a sluggish digestion ( as in constipation, bloating and slow digestion ) and others see diarrhea, acid reflux and nausea. I have both - some times I have gastroparesis ( when the food does not get pushed through the gut and lies in the stomach for a long time ) and other times I have IBS-D ( irritable bowel syndrome with diarrhea ). I am under the care of a GI specialist for many years and had every possible test done - my symptoms are said to be a product of dysautonomia. Although i needed several GI meds in the beginning of my illness to heal the GI tract I now only take a acid blocker and occasional nausea meds. What has helped me to calm my GI tract is mostly WHAT I eat ( low carb, high protein ) and WHEN I eat ( I avoid large meals but eat small helpings at least six times a day ). I also eat slow, chew well and minimize drinking while eating, i drink afterwards. I hope you will be able to see the GI specialist soon and that they will be able to help you. In the meantime you may want to try to determine what foods make you feel bad and what times of the day you eat. Many people here have a food-diary - this can help you determine what is good for you and what you do not tolerate. Simply keep track of what and when you eat and what your body does after the meals, when you go to the bathroom etc. This will be helpful for the doctor as well.

@Sarah Tee I knit also! Socks are my favorite because they come together quickly. Just tell yourself that you are exercising your fingers 😁!

@Sarah Tee I know how you feel! Whenever I have a "set-back" like you describe I go back to square one ( exercise wise ). I make myself do supine exercises and then gradually increase to sitting and then upright. Or I walk a few minutes and gradually increase the time. If we dont feel like exercising we should always take this as a signal from our body that we need to take things slow. Whenever I have an allergic reaction ( even just one single insect bite ) I flare. Histamine is a vasodilator, so it can wreak havoc on our unstable ANS. I sincerely hope you will feel better soon. Be kind to yourself!

@MikeO - Yum! When will you open your restaurant, and can I get the family discount?

@MaineDoug I have episodes of either high or low BP with flares, and I experience tinnitus ( or more rushing sounds in my ears ) during both. With the high BP the sound is more pulsating and with low BP it is more steady.

@MaineDoug - it has been evaluated by a PT that I consistantly develop orthostatic and POTS symptoms after pretty much exactly 2 minutes of standing at a counter. Standing in line is pretty much impossible for me. When I stand somewhere talking to someone I immediately can tell when the moment comes and usually have to sit on my heels or find a chair. Walking is a bit better, but after about ten minutes of walking I become symptomatic and need to sit for a while. If not I will definitely have a flare for at least several days.

Best of luck @MaineDoug. Please keep us posted!

@Sarah Tee first of all CONGRATULATIONS to your newly returned quality of life! Is this due to CCB or because the autoimmune condition is being addressed? I loved the film Awakenings, and have compared it to my own situation many times! Actually any time I am in a flare I feel like the main character!

@JCO please know that I know of many, many young people that ended up dead in their tracks from POTS, and many of them got better over time. Many young people do just fine once treated properly. I had HPOTS all of my life ( albeit did not become severely symptomatic until my fourties ), and it runs in my family, but I found out through the younger generation ( daughter and nieces ) that the earlier we intervene the better the outcome. At least that is the case in my family.

For me this was not the case. My cardiologist is wonderful, and has really informed himself about dysautonomia. When he ordered a TTT it was an EP that did the test, and he was HORRIBLE! Not only was he ignorant (" You only pass out because you are hysteric"), dismissive (" Your BP is elevated because you take it too much") and uneducated (" POTS is not real, it is a fashion diagnosis" ), but he also deemed the test as normal when it was clearly positive ( later my autonomic specialist reviewed the TTT and said it was POTS, then he confirmed HPOTS with labs that showed high norepinephrine ) So - what specialty a doctor chooses does not make them a better physician!

@JCO This sounds similar to what happened to me when I first got ill and had not yet received proper medical care. The first step would be an appointment with a cardiologist who should perform a TTT. Then they might prescribe a beta blocker ( usually the first step ). Mild but regular exercise is important, and compression garments. I think waiting for the february appointment is too long for his symptoms to go untreated. Does he have a PCP? That could be the first step and he may request a cardiology referral

@Sarah Tee I am sorry! Hang in there, dont fret if you become irritable. Your family will know this reaction by now. Best wishes.