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Normally you just call your insurance and ask to talk to a case manager. Then you simply ask them whatever question you have. You can appeal that decision. In most long term disability insurances you must be unable to work for at least 6 months, depending on your company. You could request a review and ask for another case worker. There should be instructions on how to go about an appeal in your paper work. I am so sorry - it is hard enough to get through each day, now you have to deal with this! Do you have someone who can help you?

That is a bit difficult to answer, @Elizaangelica. Some people with POTS recover almost completely, whereas others suffer for the rest of their lives. What seems to be an ongoing symptom is orthostatic intolerance. Fatigue also seems to be a symptom that many suffer from, even if HR and bP are controlled. Some people - myself included - are disabled, and Others work, even full time. I think the biggest hurdle for many of us is the anxiety that comes with our symptoms. When at our worst it is easy to think that it will be like that for the rest of our lives. But in very few cases do the symptoms not improve or get worse. I have severe HPOTS and experienced fainting and seizures multiple times a week. Today I rarely get these anymore. This is partly due to my treatments and meds but also because I have learned to listen to my body, to respond to the faintest signals in order to stop the chain reaction of complete chaos. You ask what is "normal" when we have POTS - well, avoiding triggers ( like standing, heat, large gatherings etc), drinking like a sieve and eating salt like it is going out of style, wearing compression hose regardless of fashion or weather, lying on the floor to avoid fainting, using a wheel chair in stores, spending days in bed due to fatigue or flares, not being understood by a majority of people, having myriads of seemingly unrelated symptoms and going to multiple specialists ... and much much more ... this is all common with POTS. So our normal is different from how we lived prior to getting this diagnosis but it does not mean that we have to spend the rest our lives in bed just because we are in a bad flare. Often we may need medications adjusted or changed - the symptoms WILL change over time, but not always for the worse.

@toomanyproblems - I ask myself this all the time. I was afraid of starting Wellbutrin b/c I have high NE levels. But it actually helped me - I don;t get it! I did not have any surges from it - which is what I had feared. Go figure!

@E pots - there are so many treatments and drugs you have not tried yet, and most of us need a combination of drugs, rather than just one pill. Don;t be discouraged - now that they found your bP to run high it opens up a whole new avenue of treatment approach! Most of us had to go through a period of years of trying different meds before we found the right combo. Treating POTS is hard, and frustrating to both patient and physician. Just hang in there and keep going back to the doc until you find relief.

You tell the psychologist the truth, just answer his questions honestly. It is not a pass or fail exam. I was evaluated by a neuro-psychologist twice, and each time she noted in my record that I do not have anxiety but that my physical symptoms are the same as those experienced with anxiety. Don't worry - even if the psychologist finds that you are suffering from some type of anxiety or depression - it may be secondary to your POTS symptoms, they can easily cause both.

Hello @E pots - a case manager at a hospital or insurance company ( here in the US ) is a person thats familiar with your specific case. They usually ask a lot of questions about your situation, diagnoses etc, and then advise you what the ( hospital, insurance etc ) can do for you. An insurance case worker will be a liaison between you and the insurance.

Hello @Elizaangelica - I have HPOTS and was on Guanfacine for years. It helped with high BP and somewhat for ADD, but I only used it in addition to my other heart medications. I only took 1/2 of the lowest dosage pill ( 0.5 mg ). Eventually I had to stop it b/c I no longer needed it, my BP stabilized b/c of IV fluids ( i still take my other BP meds though ). I don;t believe that I personally would take it if my BP was on the low side, like yours. It is a pretty powerful little pill! You might benefit more form Ritalin ( which I also take ), or another ADD med.

I ever only tried Lexapro and Wellbutrin, but I found them to be equally effective for me. And I took the Wellbutrin on top of Lexapro.

@BrookM - this question should be asked of the cardiologist that scheduled the appointments. I know that Midodrine has an exceptional short half-life, so they may just want you to hold it the morning of. Normally they give you literature that tells you what meds - if any - to hold, or they call you with that information prior to the tests. To make sure I would call the office.

There have been several posts regarding this matter in the past, but I wanted to share this finding. Many of us notice flares - or at least worsening of some symptoms - with weather changes or when traveling to places at different elevations than we are used to. I travelled last summer from my home at 3000 feet elevation to the ocean ( obviously at sea level, duh! ), and the minute I stepped out of the car I flared big time, having to stay in the hotel for almost the entire stay. I also experience flares every time the weather changes suddenly from good to bad ( stormy, windy, rain, cold front moving in etc ). During these times I experience severe vasoconstriction leading to cold hands and feet, tachycardia, high BP, brain fog, orthostatic intolerance etc, all seem to improve when better weather comes back. In the summer I cannot ( and most of us can't ) tolerate heat and humidity, I have to stay inside or else pass out. I am so severely affected by temperature changes that i have to adjust some of my meds according to the seasons ( Diltiazem And beta blocker at higher doses in winter, when I suffer more from vasoconstriction ). I have always wondered why that is, since there do not seem to be studies done on this in regards to POTS, although most of us experience the same. So I came across this simple worded article Physical Effects of Barometric Pressure Changes (azcentral.com) that states the following: "When the barometric pressure falls, so does the amount of oxygen in the air. Blood vessels react by dilating or constricting and the sinus cavity often responds to this change with a sinus headache." The article also explains why we experience increases in joint pain and sinus trouble during weather changes. I always was aware of me responding drastically to barometric pressure changes but this article is the first I read that explains why. Makes a lot of sense!!!!!!

Well - for me there was. I would faint or have seizures when HR went above 160 at the same time as my BP went above 150ish/100ish. I could run a HR of 180 without a spike in bP, but could not sustain that rate without eventually fainting. The fainting and seizures appear to work almost like a reset - everything normalizes afterwards. I once was on a holter monitor that recorded 3 hours of HR in the 150's ( eventually this led to fainting ). During this time I was - of course - highly symptomatic. My cardiologist said that although the tachycardia itself is harmless, with prolonged periods of HR's as high as you describe there could eventually develop problems, including heart attacks, simply because the heart cannot sustain rates like that for very long. I believe that that is why many of us faint - the heart cannot adequately circulate blood at those rates. You describe that your HR jumps up to above 200 and then slowly lowers again - that should be less of a problem to your heart muscle than a sustained HR in that range, or even lower. You mention that your HR spikes and then falls - does it remain elevated at all once it drops or does it eventually go back to normal? And does it ONLY get high when your bp drops, or does it ever get high without a drop in BP and then stay there?

@Shercakes - my sister actually just had a long eye exam for this condition from her ophthalmologist and now she has special glasses. Not only have her eye problems improved but she also feels a lot less stressed and her BP has even come down!!!! I am not sure if it is a coincidence ( she changed meds around the same time she started wearing the glasses ) but her POTS symptoms have improved!!!!

@p8d - thanks for the update and link. It's so great to hear that you are feeling better! I truly hope the medications will continue to give you relief!!!!

@Bobannon - there really is no specific number, anything over 120 is considered tachycardia. The diagnostic criteria used most commonly states " increase of 30 BPM or above 120 BPM within 10 minutes of standing" .

Thanks @Platypus - yes, medication hypersensitivity is very common in dysautonomia, and most of us - myself included - have to start on extremely low doses, even half of a pediatric dose.

Huh - pretty much instantly! I run the fist 200 ml of my infusion wide open, and it helps right away. I can give you an example: not too long ago I had overdone things and my port was not accessed ( I need to give it 2 days of rest without a dressing b/c I am allergic to the dressing ). I ended up in bed, barely able to stand, with chills, shivering, ice cold hands and feet, unable to find words or think straight, BP and HR high. the nurse came to access my port and ran the fluids wide open. Within just a few minutes she was amazed to see my color turn from ashen to pink, I could speak and laugh, my feet turned from white and frozen to pink and warm ( you could SEE them releasing the vein spasms ), my HR and BP turned to my usual slightly on the low side and I could get up without even feeling dizzy. I get 2-3 liters a week and use them preventatively, not only to treat the flares. So I rarely get bad anymore, unless I am sick or stressed etc. Prior to the port and home IV fluids I had to be admitted to hospital for overnight fluids more often than I can even remember, every 6-8 weeks for years. I was always on telemetry and the immediate response to the fluids was always caught on monitor, and my vital signs also reflected this in my chart. It baffled many docs who thought drinking fluids was all I needed.

Exercising several times a day can help with that. I use a rowing machine or do mild aerobics. Exercise helps use up some of that penned up nervous energy, I rest until I feel stable, then I exercise depending on my abilities that day and then rest afterwards. In between I do chores, but ONLY to my tolerance. On bad days I simply rest, on good days I am more active, I too don;t feel good when i have to be inactive for too long, but keeping active to tolerance helps with most of my symptoms and prevents the feeling you describe. Also - when I have to stay in bed I stay active with knitting, folding laundry etc - this distracts me from the misery!!!!!!

I take low dose Ativan, o.5 mg, on evenings when I am too worked up to sleep. When I take it 1 hours before bedtime and avoid electronics etc it puts me out like a light, and the next day i might be a bit groggy but no bog deal at all. But I only use it sparingly b/c of it's addictive properties. Another medication my PCP prescribed for me that helps with sleep is the muscle relaxer Cyclobenzaprine. During flares my muscles tighten up from the elevated adrenaline and I get spasms as well as seizures. So 1/2 of a cyclobenzaprine ( Flexeril ) helps a lot on those nights. It is a non-controlled substance, so my PCP has prescribed for insomnia before.

I was tested numerous times for AI disease due to generalized joint pains of unknown origin. All AI tests including extensive work-up by rheumatologist always came up normal except for an elevated ESR ( 54 ). My autonomic specialist ( one of the leading in the field ) states that auto-inflammatory disease ( recently linked to POTS ) cannot be diagnosed with AI testing b/c it involves a different branch of the immune system, the innate immune system. So common AI tests that rheumatologists order will not show it, just as @p8d suggests. BTW - I too have NAFLD and high cholesterol despite a liver-friendly diet and no alcohol!

@Bobannon - 🤗😙☺️ - I love your dog!!!!!!!

Hi @Bobannon - POTS can be triggered by inflammation, as a matter of fact they only recently realized that many POTS types are auto-inflammatory in origin ( as opposed to auto-immune ). I myself have HPOTS and my autonomic specialist put me on Plaquenil - an immune med. It has greatly helped with joint pains, and also has improved my energy levels! In most cases the cardiologist refers patients back to the PCP for a work-up for immune problems or suspected inflammatory issues. This would involve blood tests etc. Depending on the results of basic labs you may get referred to a rheumatologist. For most POTS sufferers a minimum of 30 mmHg counter pressure is recommended, as well as thigh high hose ( knee-high does not provided enough area of pressure ). You can easily order compression hose online, but it really should be fitted. This can be done at any home medical supply store. They will measure the length and circumference of your legs and then fit you with the appropriate size garment. Too tight can interrupt blood flow and too loose would be useless, so getting the correct size is extremely important. Just picking between small, medium or large is definitely not good enough! Generally speaking - POTS patients are supposed to increase BOTH fluids and salt. Adequate hydration is very important to avoid low blood volume, which can cause POTS symptoms to worsen. but simply drinking more will lower your electrolytes, so you should always increase your salt intake as well. Most POTS patients drink between 2-3 liters of fluid a day and add electrolytes or salt. However - if you have problems with hypertension as well you need to consult your doctor before increasing salt. I have both low and high BP and am on IV fluids that contain sodium and other electrolytes, and even during times of high BP I need the increased salt. Many POTS sufferers also use banana bag solution or sports drinks to combine fluids and electrolyte supplementation. -- If your cardiologist has not recommended increasing salt and fluids I would call and ask, but otherwise it is generally recommended for POTS, as well as OH.

Also @Bobannon - have you increased salt and fluid intake and wearing compression hose? These measures are ESSENTIAL for blood pooling, and are commonly prescribed for both POTS and OH. They help to prevent syncope as well. Since you are not currently able to stand it is also very important that you do not become deconditioned - do leg and abdominal exercises and attempt standing every hour or so, even if you just stand for a few seconds.

Hello @Bobannon - welcome to the forum!!! Wow - you have a lot going on! And it looks like you had the run-around with doctors!!!! -- I am sorry you are having such a tough time, but also glad that some of the more serious diagnoses were ruled out! I am a bit confused. POTS and orthostatic hypotension are two different autonomic disorders, and normally the criteria for POTS is an increase in HR WITHOUT a significant drop in BP. Here is the definition as per this link: Postural Tachycardia Syndrome (POTS) Diagnosis and Treatment: Basics and New Developments - American College of Cardiology (acc.org) "POTS is defined as the presence of chronic symptoms of orthostatic intolerance (≥6 months) accompanied by an increased heart rate (HR) ≥30 bpm within 10 minutes of assuming an upright posture (Figure 1) and in the absence of orthostatic hypotension (blood pressure [BP] fall >20/10 mmHg).1,2 " Unless the criteria have recently changed this has always been important in diagnosing POTS, since an increase in HR is a normal compensatory mechanism of the ANS to a drop in BP. Orthostatic hypotension is also a form of dysautonomia, but it is different from POTS. Has your doctor considered a TTT? This is normally the test considered essential in diagnosing POTS or OH. There are some symptoms that OH and POTS share. Only 30 % of POTS patients actually faint ( as per literature ), but syncope is common with OH. Often OH is caused by the ANS triggering sudden dilation of the blood vessels, which will cause the blood volume to pool in the lower extremities. This naturally will cause symptoms of pre-syncope and also syncope. The symptoms of POTS can also be caused by blood pooling from vasodilation, however the increase in HR is not normally accompanied by a significant drop in BP - hence the differentiation between the two. I am not sure if you can have both diagnoses together or if the one cancels out the other. Good thing you have an upcoming appointment with a specialist! Hopefully he/she ( they? ) will be able to get to the bottom of this. The good thing is that there are meds that can help with vasodilation and OH, and these meds can also be used to treat certain types of POTS. Midodrine and Fludrocortisone, for example, are both medications that can help with excessive vasodilation. Beta blockers are commonly used to treat orthostatic tachycardia IF THE TACHYCARDIA IS NOT CAUSED BY A DROP IN BP. If it is then correcting the hypotension should stop the tachycardia as well. This symptom can be caused by the drop in BP, since the heart has to pump extra hard to circulate the blood. Sudden weight loss can cause orthostatic symptoms, since now the body has to adjust to a different body mass. Hypotension with weight loss is not that uncommon. So - I hope your appointment will NOT be positive for POTS, and that the doctor will be able to help you with these difficult to deal with symptoms. Good Luck - and please keep us posted!!!!!

@KiminOrlando thank you for posting this 💗, it explains a lot!

Dear @POTSie78 - well, the coping part takes a while. I too had to fight and advocate for myself when I first became ill with HPOTS. I literally went online and typed in " tachycardia and hypertension" and went from there. A week later I knew I had HPOTS, which neither me nor any other docs I knew had ever heard of. My wonderful PCP knew my symptoms were real and referred me to several cardiologists and to an autonomic neurologist at a big autonomic research facility - all treated me with various degrees of ignorance. Back then I did not really cope - I fought for survival and recognition of my disabling symptoms, and I fought to remain functioning. After 2 years ( and one year waiting period ) I finally got in to my current autonomic specialist and he diagnosed me on the spot, confirmed with norepinephrine tests. What a relief that was! But even after diagnosis I was not coping - I still had these disabling symptoms and lost my job ( and any chance of ever being able to work again as long as I was sick ). It took years of trying different meds and treatments and eventually getting approved for SSDI, as well as a serious bout with depression before I truly learned to "cope" - it took full acceptance of the reality that I was never going to be able to go back to my former active life. Initially that felt like I was giving up, but it paved the way for me to learn to live with - and despite - my limitations from POTS. So - no, I don;t think most of us necessarily "cope", even if we might seem strong. And for most of us it takes exactly what you are going through right now: searching, hoping, getting disappointed and starting all over again. Not too long ago the time from onset of symptoms to diagnosis was 6 years for the average POTS patient. That has greatly improved - but not finding treatment. There are now many docs out there who can DIAGNOSE POTS - but very few that can successfully treat it. This is mostly due to the incorrect assumption by doctors that there is only one kind of POTS ( which there is NOT!!!! ). So if beta blocker, salt and fluid loading and compression does not work their arsenal is exhausted - go somewhere else. And unfortunately they often simply hand you off to someone else, equally unprepared to take on the treatment of POTS. So - at least be assured that you are not alone, that you are doing the right thing by continuing to find help, and that there is a lot of hope. Mayo has helped many other POTS sufferers - hopefully they will be able to help you too. Best of luck, and hugs!!!!!!