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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!!!!!!

👍!!

@RecipeForDisaster - I would definitely bring this to the attention of your autonomic specialist, since he was the one who p-ordered the collar.

@Dystasysta I am 54 and have been loosing a lot of weight. I also used to have the "thin legs and barrel-belly" shape but have found that diet changes took care of that for me. A dietician told me that I should avoid raw veggies and fruit and steam them instead, avoid carbs but push protein. I too cannot tolerate Ensure etc since they make me sick, so I have found protein bars do the trick for me, I eat 1/2 a bar at a time but several times a day. I avoid sweets, and caffeine ( except for the morning joe ) and alcohol. And I am with you on the chicken and potato!!!!!! Plus - fiber and probiotics help a lot with the bloating!!!!! And yoghurt.

hello @Dystasysta - yes, what you describe is very typical for HPOTS, I have experienced it a lot. In HPOTS our sympathetic NS overcompensates for standing up and being stimulated, so we are essentially in a constant fight-or-flight mode. The symptoms of this response are what you describe: blurred vision due to pupil dilation, elevated BP that can suddenly drop, need to urinate ( bladder emptying is a common symptom, that is why we pee ourselves when scared ) and sensations like electricity in our legs ( the urge to "flee" ). So, as you see, this is what happens when the ANS triggers the dumping of adrenaline. Here is an article that explains it What Happens to Your Body During the Fight or Flight Response? – Health Essentials from Cleveland Clinic For me this used to get so bad that I actually had autonomic seizures! But I have conquered this for the most part. Of course proper medication is essential but even with that I can still get these spells. What has helped me the most is STOPPING whatever I am doing as soon as I notice the first symptom - for me that is usually a pain in my chest and a weird feeling in my legs, like fullness or heaviness. As soon as I feel this I stop doing what I am doing and lie down, no matter where I am. I also prevent anything that I know will trigger it - prolonged standing ( I use a bar stool at the kitchen counter, a wheel chair in stores etc ), exercise ( I only exercise when I am well rested and know that I can rest afterwards ) and stimulation like phone calls or computer time. Over the years I have learned to listen to my body and follow it's prompts, and with this I have overcome many of the most dramatic and disabling symptoms. Of course it is not ALL up to us - a carefully and painstakingly tested medication regime was needed in addition to the lifestyle changes and adjustments, so simply doing the steps mentioned is not enough. They have recorded these attacks many times on me on both Telemetry as well as EEG - they are caused by excessive constriction of the blood vessels due to too much adrenaline. This would cause tremors, chills, cold hands and feet, racing heart, blurred vision ... beta blockers were not enough to stop them. So what has helped me were calcium channel blockers - vasodilators that can prevent the severe constriction. However - I am not sure how vasodilators would affect MCAS, since histamine is a vasodilator. Are you on H1/H2 blockers for the mast cell issues?

Hello @starshine - welcome to this forum! - Yes, insomnia is unfortunately a common problem in untreated POTS. It seems to happen due to adrenaline levels not dropping to accommodate REM sleep, as it normally should happen. That is why you wake up with racing heart etc. For me this was a problem for years, and I did not find relief until I had to become disabled and also had found proper medication regimen. What sets insomnia off for me is overdoing things and becoming too stimulated, whether this is by exercise or mental or emotional stimulation. I find that every time I push myself to do more than I know my body can take I pay with insomnia and bedrest. So finding a healthy balance of what you can do ( rest and activity carefully balanced to your personal abilities ) and trying to find a healthy routine were a necessity for me. Only once I had to stop working and was able learn what that looks like for me did I find relief. For me this involves a lot of rest but also exercise ( rowing machine and mild aerobic exercises as well as household chores ), having the same daily routine ( up at 5, to bed at 9 ) and - MOST IMPORTANT!!!! - stopping any activity as soon as I find it is getting too much. This may seem unrealistic to you but it is what needs to be done for me in order to be able to stay on top of my symptoms. When I am overstimulated and normally would not be able to sleep I take a low dose of Lorazepam, this helps me to go to sleep on those nights. But due to it's addictive properties this is only for really bad days, I use it maybe twice a week. Many members on this forum are suffering from insomnia and try different methods like no electronics in the evening, no heavy meals after 6pm, light and noise cancelling devices etc. Some people take melatonin or herbal teas before bed. You might search the forum for some posts about this subject, there have been many posts that might be helpful to you. I am so sorry you are having this very difficult to live with symptoms, but know that it can be overcome. And talk to your doctor about it. When we don;t sleep our symptoms get much worse, b/c we are in constant stress mode.

Well - LR does not stick around longer, rather the EFFECTS are longer lasting. @Sarah Tee - the risks with IV fluids are only high IF YOU NEED A PORT to infuse them, like for long term treatment. For outpatient treatment on an as needed base they usually are given through a peripheral IV access, like when they take a blood sample. I used to have this done at an outpatient center or even the ER. There are minimal risks involved with this, problem is you have to stay at the center for the infusion. For me a 4 hour infusion helped for 3 days on average, and was certainly ALWAYS a lifesaver to end any flares! Many POTS patients here in the US have standing orders from their docs to get infusions on an as-needed basis, which helps to both prevent and treat flares.

Hello @SnowBird312 - welcome to the forum!!!! I am so sorry you are going through all of this! It's a good thing that your brain fog and dizziness have improved. i am wondering - you said your HR has not come down at all. Is Metoprolol the only beta blocker your doctor has ever prescribed? For many of us just one - or just any - beta blocker does not necessarily work. Some do better with Propranolol or Carvelidol. Personally I tried 3 BB's and Carvelidol is the only one that has helped for the high HR. Also - how much Metoprolol do you take? In most cases once we are sure we can tolerate a med it needs to be slowly increased. For example: I started with 3.125 mg of Carvelidol and then 6.25, then 12.5 then 25 ... as you see, it takes a while to find the right dosage. So - most of us need to go up with the dosage and if that does not work we need to try another BB, and if that does not work maybe Midodrine or Florinef ... depending on the mechanism of your type of POTS. Also - have you tried compression hose?

@CJ65 - I too had very good results from Wellbutrin! My autonomic specialist ordered it on top of Lexapro, due to my problems with fatigue. It really helped, but unfortunately I had to stop it after 3 months b/c it gave me very bad acne ( an adverse effect ).

I would like to state that Ranitidine ( Zantac ) is no longer safe to take and has been pulled off the market

I second everything @cmep37 said: when IV fluids were not available I would rest, rest and rest, with bed exercises increased to tolerance every hours or more. Ever so slowly I would always improve. And for me too it was a learning process to not get too disappointed with every flare. I used to think each time I would be stuck in that flare but I always recover. Today I just shrug my shoulders and rest until it blows over!!!!!

@cmep37 this so accurately describes what it is like! The exact same thing happened to me: do a bit, realize it was too much, recover with rest and when feeling better start this same scenario all over again! But thankfully - as you - I have found a way ( with medications, treatments and strictly following my limitations ) that I now know what I can and cannot do, and by listening closely to my body I can avoid flares for the most part!

@CallieAndToby22 - yes, I can relate. Until recently i was unable to be active, could not even do minor house work and could not be on the phone/watch TV/do computer work etc for any length of time at all. Anything pushing me over my limit ended up with me in bed, ear plugs in ears. Diltiazem and Carvelidol helped with the HR and BP, Ritalin gave me about 2 hours of energy in the morning and SSRI helped with fatigue to a degree. What has helped the most are weekly IV fluids and ( recently ) Plaquenil. I have been on the Plaquenil since January ( for joint pains and POTS ) and it has given me tremendous energy. I can be active now, do chores ( even gardening!!!! ) all day in increments, with rest in between. I do not get worn out by the slightest activity and feel so much more normal. And the added activity in turn stabilizes my HR and BP. I honesty feel the best I have since onset of POTS 11 years ago! And:we are halfway through 2021 and I have not had a single syncopal event or seizure!!!!!!! I hope your docs will be willing to experiment with fluids or different meds, like mine did. I had begged to try Plaquenil for years but the rheumatologist refused, he wanted me to take Prednisone, which made me crash. So my autonomic specialist ordered it for me, keeping in mind that there is new evidence out that POTS is auto-inflammatory in nature in many cases. Of course it is not covered by insurance ( FDA approved diagnoses are RA and Malaria ) but it is cheap. Wishing you the Best !

I have been on Escitalopram ( Lexapro ) for years and do not experience hair loss.

@Abe - I have been in your shoes many times, and the only thing that helps me in a severe flare like that are IV fluids. I used to be unable to stand or walk, and had to crawl to make it to the bathroom without passing out. This often ended up with me having to go to ER for IV fluids, and my PCP usually admitted me to hospital for 24 hours of IV fluids. This ALWAYS, without fail, fixed me right up. MY high BP and HR would drop to normal and I could walk and be active again without passing out. After several trips to ER and hospital my PCP gave me a standing order for IV fluids as needed ( 1 - 2 liters of NSS over 3-4 hours as needed ) and I could go to an infusion center or urgent care center to get the infusions. In my personal experience, IV fluids could get you out of your current crisis, they are a known, effective and often prescribed treatment for POTS flares and POTS exacerbation. Here is an article related to this, written by Dr Grubb - a famous pioneer and authority in everything dysautonomia related: Effects of intermittent intravenous saline infusions in patients with medication-refractory postural tachycardia syndrome - PubMed (nih.gov)

@Jyoti Hi - the HR of 155-160 BPM should be the EXERCISE rate for your age. In normal people this HR should be achieved with exercise to ensure proper circulation and heart health. However - the problem with POTS is that we get higher HR than that just by standing. The other thing is that we do not have the ability to control our HR, often not even with increase in salt and fluid and wearing compression garments. So, IMO, they are both right and both not helpful. It would be nice to keep your HR below 95 but the truth is that with dysautonomia we are not necessarily able to, at least not without medication. And yes - we SHOULD be able to exercise and get our HR up to the recommended rate but we get this HR without exercise and - in most cases - are exercise intolerant. For me any exercise that would get my HR up that high would make me pass out or have an autonomic seizure. For most of us it would at least cause us to be bedridden for a while. To give you those parameters is like telling a chicken to only poop in the litterbox!!!!

@Dystasysta When in hospital for the prep they have a bedside commode next to the bed and thanks to the IV fluids I am able to use that instead of a 😬 bedpan. I think you should be fine with a whole gang monitoring you, even with all the allergies you have. My BP also swings wildly when under stress, but I always have done pretty well with scopes. Wishing you an easy time with it and good results!!!!! Please let us know how it goes!!!!!

@Dystasysta - welcome back ! I am sorry you are having such a bad time. I too have GI issues related to dysautonomia, and had several colonoscopies. I suffer from autonomic seizures, and the prep for a colonoscopy always triggers them and a full flare to follow. Since I - thankfully - have had normal scopes my PCP orders colo-guard ( send-in specimens from home ) and I only do a scoping every other year. I used to have to be admitted to hospital for the prep so I could receive IV fluids during it. Now I get IV fluids at home, so I can do the prep at home, but even with the fluids I still have a flare afterwards, and have seizures during the procedure. I think colonoscopies are very important to ensure our heath and for early detection of problems like cancer etc, so a colonoscopy can be a lifesaver. I would definitely go through with it, especially at your age ( I am 54, so I too am at the age of higher risk of colon CA ), but i would discuss getting IV fluids during and after the prep to minimize POTS related complications.

@tigger2512 - if you have POTS your heart monitor may simply show sinus tachycardia, essentially a fast HR. In POTS the HR goes up when you stand, and stays up - on the monitor they cannot see WHY the HR goes up, so monitors often do not clarify a POTS diagnosis. Simply walking up a steep hill or getting excited can get your HR up like that. I had numerous monitors prior to my POTS diagnosis and they only showed tachycardia ( up to 160 BPM ) and PVC's - no one suspected POTS based on that alone. This sounds exactly like presyncope - almost fainting. I have neuro-cardiogenic syncope ( NCS ) in addition to POTS, it makes me feel like that prior to passing out. I had one of these episodes during my first TTT: my HR sped up and then suddenly plummeted and I fainted. The symptoms you describe happen before I faint and often fainting can be avoided by me lying down or squatting on the floor ( I too have extensively studied the bottom shelves and even the floor in Walmart ... ) For these symptoms they usually recommend the same treatment as for POTS: increase fluid and salt intake and wear compression hose. I would be surprised of no cardiologist had ever mentioned this to you. You may find drastic improvement from following these steps alone, and the beta blocker might hep as well. I was put on Metoprolol for the NCS diagnosis but in my case it was not enough, since I also have HPOTS.