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@Slim Im - I get POTS flares whenever I have allergies or even insect bites. I also do not well with immunizations. I was told this is due to histamine release, which is a vasodilator and therefore can wreak havoc in our unstable ANS.

PLEASE go to get it checked - it COULD be a blood clot. I am not aware that Florinef would cause swelling in just one leg.

@POTSius - thanks so much for sharing that this helped you! I hope it continues to work!!!!! 😊

@merkat30 - for me IV Fluids bring my BP down when it is high from HPOTS b/c they help relax the blood vessels.

@toomanyproblems - I recently started a post on autoinflammation & POTS, in which I mentioned the new findings in current research about the inert immune system causing POTS by way of autoinflammation ( vs autoimmune ). I think the fact that so many COVID patients develop post-viral POTS goes along with those findings.

I have never heard of it either but just looked it up. Sorry - I get what the test is but have no words of wisdom. I always am for checking into things, though, since it may pinpoint what causes her problems.

Which test are you referring to?

Hello @Ashc - I do not really have depression from COVID but had it due to becoming disabled from POTS years ago. I did talk to a friend who is a counselor back then, as well as my doctor. Between a few talks and going on SSRI as well as improving my diet and going outside every day ( when possible due to weather ) I improved considerably. Feeling shut in ( or out ), being bored, feeling hopeless and experiencing inactivity from the restrictions can cause to feelings of depression, and that is normal. In these times I have found social media a lifesaver ( especially facetime and zoom ). For me being confined to the house is nothing new, due to limitations from POTS, and I have found that finding new hobbies has helped me a lot. Also volunteering in different ways can help, we can contact different Nonprofits or church orgs to offer to help. Forums always appreciate input, and some places may appreciate help such as calling older or sick people that are alone over the holidays etc. You can also check with the local senior center etc.

@Mslucimills - welcome to the forum! I was on Bystolic once and it did not help my high BP. It did not even help for the tachycardia that much ( neither did Metoprolol ). Carvelidol ( nonselective beta blocker ) and Diltiazem ( calcium channel blocker ) helped me much, much more. But we are all different. Generally speaking - medication effectiveness is highly individual in POTS, so no ONE type of med works for all of us, even if we have the same symptoms. My docs and my autonomic specialist usually either up the dose ( if possible ) or switch to another medication if one does not seem to help.

WHAAATT? 😵 I am shocked! Elavil is a potent med, and I cannot imagine putting a 6 year old on that!!!! --- One thing to keep in mind - people with dysautonomia are generally very sensitive to medication, so my specialist told me to always go the very possible lowest dose at first, even if that means to go by pediatric dose or breaking the lowest dose in half. Many of my meds were introduced that way and if I tolerated them they were increased slowly, in small increments. That way if I did not tolerate it the negative effects were not so bad, and also that way we could see what dose was enough ( for me usually a much lower dose that recommended for my age and weight ). So please keep that in mind when any doctor wants to introduce a new med.

Hey @MTRJ75 - seizures come in different types and forms, so anything is possible. I take autonomic seizures and they are not like what you describe but rather that I loose consciousness and my body stiffens and back arches for up to 2 minutes ( usually 30 seconds or so ). I am not sure that seizures become progressively worse like you describe - but I am no expert!

Hello @Cmama - welcome to the forum! I am so sorry that you son has all these scary issues. I am wondering if he might have allergies causing these spasms. Has he ever been evaluated by an allergist? Histamine release can trigger POTS symptoms since it is a vasodilator. Also - has he been evaluated for sleep apnea? You mention the emergencies always happen at night. A sleep study might shed some light on the issue. As far as I know POTS does not commonly cause the type of respiratory symptoms you describe, so it may be unrelated or - as I mentioned - it COULD be that it is due to allergies or immune issues that can cause POTS. What tests will Mayo be doing?

@Hippopotsamus - you know, I was just thinking .. in 20 years medicine may have changed to the point that dysautonomia is a common diagnosis, and treatments may be available by then ( certainly hope so ). In literature they mention that dysautonomia has been around forever, but the docs never knew what it was and were baffled by the symptoms. I read that in the recent past it was always brushed off as anxiety, hypochondria or hysteria. And before that they had different names for it but no treatment, they used to put the people ( mostly women ) on bedrest and there they would stay indefinitely. How sad! I wonder if that is what happens to all the females in classic novels that had a mysterious illness and did not come out of the room or had to move to the sea for a better climate. Well - makes me almost relieved to have it in this day and age ...

Hello again, @LisaMarie - be aware that Ativan ( Lorazepam ) is a highly addictive and controlled substance, I doubt a doctor would consider it at her young age. You are so welcome 😉. Feel free to PM me anytime , I am glad to help if I can.

Hello @LisaMarie - welcome to this forum! --- I am very surprised that your daughter was diagnosed with dysautonomia that early, but am not surprised to see her get worse in her teens. I have HPOTS and also have ADD, had it since childhood. Due to the symptoms of dysautonomia I was referred to a neuropsychologist twice, and she diagnosed me with ADD. I never knew I had it until my adult years and it turns out that all of my 4 siblings have it too, as well as POTS for my 2 sisters. Depending on your insurance you may want to ask for a referral to a neuropsychologist b/c they can help her deal with the ADD. --- I have been on Lexapro for the POTS but my autonomic specialists prefers Wellbutrin. I had allergic reaction to it, so had to stop, but I know that can be very helpful and many POTS patients take it. I also am on a low dose of Ritalin which helps with energy and concentration, although it is very short lived. You would think the Ritalin would worsen the insomnia ( since it is a stimulant ) but it has helped me with my sleep. In HPOTS ( hyperadrenergic POTS ) the insomnia is caused by increased adrenaline levels, which are supposed to drop during the night to allow REM sleep. Having the added energy and being able to exercise a bit helps me with sleep. I am VERY surprised the doctor ordered clonidine for sleep, especially in someone as young as your daughter. It is a powerful drug and - although it helps some POTS patients - can wreak havoc in our already unstable systems. I could not tolerate it at all and had to stop it after just a few days. I also have a prescription for Ativan, which I take sometimes when I am too wound up to sleep. It is very important to have a sleep routine, meaning going to bed roughly at the same time each night, not using electronics or doing exercises for at least one hour before bedtime, avoiding heavy food before bedtime or drinking too much in the evening. Getting daily outdoor time is also important. I hope the new cardiologist will be sensitive to her needs and is educated about POTS. Has she ever had a TTT? Often once the POTS is under control the insomnia improves as well. The usual treatment includes increased salt and water intake, compression hose and a careful balance of rest and exercise. One of the biggest challenges in POTS for me is having to constantly listen to my body, to stop when I need to and then to get up and be active when I can. I know this is difficult for a teenage but it is very important in order to stay on top of POTS. Pushing through or powering through the symptoms will make it much worse. Good Luck with the new doctor. Please let us know how things are going. Best Wishes!

@cmep37 - I frequently pop my ribs out too! I had this happen to one particular rib for years before finally my chiropractor found what it was. Between her and a friend who is a RPT they showed me a maneuver ( mostly stretching and twisting ) that pops the rib back in. I often can do this at night, when I am relaxed. It works, but it does not help to prevent the rib from popping back out. With me it is a rib that was broken once and healed crooked so that it now is too short, therefore it easily pops out. I also found some useful videos on youtube that show PT's doing a stretch that pops it back in.

@scmnewlgpt I do not have mast cell issues but do have NCS and HPOTS. I was prescribed Escitalopram ( SSRI ) years ago for POTS and it has really helped. I have no bad effects from it. It really has improved the adrenaline surges and also has made me simply feel better. I also was - in addition - on Bupropion ( SNRI ) and felt good on it as well but had to stop it after a month because It gave me acne ( very rare side effect BTW ). SSRI's and SNRI's in POTS is just like with any other med: we are highly sensitive to any meds and what works is highly individual. My autonomic specialist uses Escitalopram and Bupropion the most b/c it seems to work and more patients tolerate it. So since you did not tolerate Paxil Wellbutrin ( Bupropion ) may be a good one to try. Good Luck!

@cmep37 - this is what happened in my case. When I first becme sick I was working 12 hour shifts on my feet, and I refused to see the necessity to stop working. After 2 years of that I could no longer stand, had to use a wheel chair and started passing out and taking autonomic seizures even WHILE SITTING. I am convinced that had I had the ability to stop working and rest for a long period and then slowly increase exercise I could have regained some of my abilities. But we'll never know, because I pushed myself too hard.

Do you mean this happens only in dysautonomia patients? Normally experiencing pain causes the BP to go UP.

Yesterday I had an appointment with my autonomic specialist. I informed him that, since onset of POTS 11 years ago, I have also been suffering from generalized joint pains and flare very badly when exposed to allergens, such as pollen or insect bites. I was seen by rheumo twice, each time with tons of labs to check AI, always negative except for ESR, WBC and RBC. I have been taking Prednisone twice, which makes my POTS worse. He explained to me that they now know that Dys is an auto-inflammatory disease, meaning it affects the innate immune system and the tests for autoimmunity will not show anything, since the adaptive immune system is an entire different entity. Here is a good article explaining the difference: Difference Between Innate and Adaptive Immunity | Compare the Difference Between Similar Terms The autoinflammatory part of POTS appears to have to do with cytokenes, mastcells and cholinergic reactions, and the labs commonly done for AI are not affected. He said that they had found compelling evidence of this and were ready to prove it by a major study but along cam COVID and shut it all down. Once they can do research again this will all evolve into a great breakthrough in finding a cure for POTS. Isn't that great? For now I will be taking Plaquenil, which should not only help with the constant inflammation but he claims it will help my POTS, especially the fatigue. A friend of mine on this forum takes it ( she is very similar to me in symptoms ) and she found good relief from it, especially with fatigue. Once it starts working I should be able to exercise more which in turn should improve many of the symptoms of POTS. I will not be able to start it until January ( an eyexam is needed before starting ) and I was told it takes about 4-6 weeks before any improvement is seen, but I will come back to this post and update how things go. I am just hopeful about the good news that better treatment is on the horizon!!! He said with this development they not only will be able to use the drugs they already have but - more importantly - can develop new drugs to help this disease. Hurray!!!!!

@CallieAndToby22 @KiminOrlando - I had to fire several ignorant docs that told me : "You are just gonna keep fainting, there is nothing to be done, it is the common faint you have", " the symptoms you have clearly stem from hysteria", " you cannot tell when you have high BP, therefore you make this up" and, my favorite: " you have a very vivid imagination". And there are even more ... 😬 I had two docs during those years that were my rock: my PCP, that did not know beans about POTS but was willing to stay the course and help me, symptom by symptom: and my current cardiologist ( not my autonomic specialist ) who - in the very beginning - admitted that he does not know anything about POTS and therefore does not feel comfortable to treat me but supported an autonomic specialists referral. Since then he has really informed himself about POTS and now treats several other POTS patients. I believe that the common denominator in this is that most docs would have to rethink their entire approach to medicine in order to admit that dysautonomia is a real thing. Forever they were under the impression that unexplainable symptoms in the absence of abnormal testing are psychosomatic. And now, suddenly, there is a whole new way to look at this, that explains the physical mechanism behind these symptoms and that they are a real disorder. There is so much to know about dysautonomia that belies what they have been practicing that they would rather deny this disease than being open to new findings. A good physician follows the oath that - most importantly - states DO NO HARM. Not taking a patient serious, ignoring symptoms because they do not understand them and dismissing seriously ill patients is clearly a breech of this oath. We just have to keep looking for our prince. I found mine, I have a wonderful team of docs that all work with me and for me and that NEVER ignore any problems I have. But it took a long time to get them, so my best advice is: keep looking. I think he is right by saying this, and it may be his way of telling you that he does not know how to help you. His responsibility then would be to refer you to someone who can. I would call the office and ask to talk to the person that said you don;t have dysautonomia and confront this person. If they make a note in your record stating that you do not have dysautonomia it can add confusion and also support other bad docs that want to believe that dysautonomia does not exist. Ask what evidence brought them to this conslusion, even if you have to request another appointment. Do not just simply take it and have them write you an untrue - and potentially harmful - report that states you do not have what you clearly have. I am sorry this happened to you again!

Hi @MTRJ75 - well, I know what you mean about exercise. I have reached the max benefit I can get from meds I have tried so far and that is why I am on IV fluids weekly. My POTS has greatly improved insofar that I barely faint or have seizures, my BP has stabilized and palpitations have ( for the most part ) stopped, fatigue is tolerable. However - I continue to have orthostatic and exercise intolerance to the degree that most exercise ROBS me of energy and I need bedrest if I do too much - or the wrong - exercise. I had a telemedicine appointment with my autonomic specialist today and he scolded me for not exercising enough. Well - compared to what I could do 2 years ago, before the IV fluids, I am VERY active! I do light housework etc every day, I walk 5-10 minutes at a time every day and I use my rowing machine often ( my current ability is 20 reps 2-3 times a day. To me that is pretty good. I also do stretching. Some days I cannot do anything. What I have found is many exercises are not good for me, and aerobic exercise ( as is recommended ) depends highly on the temperature. In the summer I can only tolerate being outside in the early morning, and in the winter I can only go outside when the sun is shining and it is above freezing. I had to laugh about this one 😂! I think what they mean is when you have POTS the exercise intolerance will keep you from exercising, which in turn will make the orthostatic intolerance worse. Therefore it IS important to exercise to tolerance, and to slowly increase exercise. Also - as you know regular exercise helps the heart and circulation because getting our HR up with exercise promotes good circulation - which we POTSies lack. As a result our heart does not have to beat so hard because the exercise helps to circulate. We will develop muscles that promote good circualtion as well, and BP is more stable.

Dear @Farah - Oh my, what a mess you are enduring! I am so sorry! --- I am glad you are seeing a neurologist, the twitching sounds like something a neurologist would be checking into. I am not sure if the neurologist would order a TTT - that is usually done by a cardiologist. With your elevated HR and BP I definitely would be asking for one. With your symptoms it is appropriate. Since you have elevated BP upon standing often they will check your neurotransmitters during the TTT, to determine of you have elevated norepinephrine levels ( if so it would be hyperadrenergic POTS ). I have HPOTS and - although I had symptoms off and on throughout my life - giving birth to my daughter triggered it for me. I also had post partum depression, although mild, and terrible fatigue, just like you. My HR and BP would skyrocket with standing. It took 2 years and 5 cardiologists and 1 neurologist before I finally saw a specialist who diagnosed me with HPOTS. Prior to seeing him I had tons of tests, including 2 TTT's ( confirmed NCS and POTS ). My norepinephrine levels were sky high, therefore the HPOTS diagnosis. Did anyone recommend increasing salt and fluid intake and wearing compression hose? That is usually the first - and very important - treatment. Watch for your BP though! I have high BP but still eat tons of salt. I am surprised she would order the propanolol as needed. And I also would not so easily accept the anxiety diagnosis. So many of us get that diagnosis slapped on because we have the physical symptoms of it and all test are usually normal. That is why you should ask for a TTT - that would differentiate from anxiety. You seem to fit the criteria for POTS: symptoms longer than 6 months, tachycardia greater than 30 BPM increase upon standing in the absence of a drop in BP. Also - pregnancy and childbirth are known triggers for POTS. IBS and other GI symptoms are common in POTS, since the ANS controls the cardiovascular system as well as the GI system. The problem with POTS is that the symptoms are similar to those of anxiety - yet they are not caused by anxiety. Actually the anxiety FOLLOWS the symptoms, meaning we get scared by the symptoms. If elevated adrenaline is at play then we also get overly excited, which also mimicks anxiety. So as you see - a inexperienced physician can easily brush the symptoms of POTS off onto anxiety. But that will not help you, IF it is POTS ( determined by TTT ) then there are many different meds that can be tried - below is a link to articles from our Information Resources tab that may be helpful to you POTS What Helps? - POTS - Dysautonomia Information Network (DINET) How is POTS Diagnosed? - POTS - Dysautonomia Information Network (DINET) Best of luck, please keep us posted how your neurology appointment went, and if you will be getting a TTT.

@adejuliannie I am sorry to butt in, since your question was addressed to DizzyGirls, but I too have autonomic seizures and take the non-selective beta blocker Carvelidol. It helps a lot with many of the symptoms. I tried other ones ( Metoprolol, Bisoprolol, Propanolol ) but only the Carvelidol made a considerable difference. However - it did not help with the seizures. My seizures are caused by excessive sympathetic overcompensation causing dumping of adrenaline, which in turn constricts all of the blood vessels what then stops circulation to the brain. What helps me there is a calcium channel blocker ( Diltiazem ) and regular IV fluids - one dilates the vessels and the other keeps them dilated ). Hopefully this is helpful to you.

Dear @Rachelexis13 - welcome to this forum! However - I am sad to hear you are so unwell. There are several things I would like to address regarding your post: - yes, the symptoms you describe DO sound like POTS. The fact that all tests are normal, you respond well to IV fluids and appear upon standing all point in the POTS direction. - you mention that the ER docs the first time said they thought it was orthostatic hypotension: WAS your BP low? You mention the high HR but did not mention what your BP was at the time. - The criteria for a POTS diagnosis are an increase in HR of 30 BPM or more WITHOUT drop in BP within the first 10 minutes of standing ( sustained ) and presence of symptoms at least 6 months ( you are not there yet ). - I do not see a need to change your cardiologist at this time. In order to diagnose POTS she would have to order a Tilt Table Test ( TTT ), which can be done at any major hospital. But since your symptoms are so recent it sounds reasonable to wait until you see her in January. The advice she gave you to increase salt and fluid intake as well as wearing compression hose is correct, and helps many people who first experience symptoms. I would be absolutely diligent in following her advice in that regard! Any autonomic specialist would want you to have symptoms for at least 6 months and have a TTT done before seeing you, and most of the good ones have very long waiting lists. The fact that your cardiologist suspects POTS is actually very encouraging! - You mention that you will graduate from college very soon and that you work - that could point towards a possible trigger for your symptoms. Both work and school can cause considerable stress on your body, which can cause symptoms like you are experiencing. That does not mean it is all in your head - nothing would be further from the truth. It simply means that the stress you may experience currently can be the trigger for your ANS to overreact. What helps there is taking more rest periods, not overdoing things and cutting back on some of the stress ( if you graduate soon school will be over, but also you may need to take a break from working ). Spending your days resting and doing regular exercises ( 30 minutes aerobic exercise 30 minutes a day every other day is recommended for POTS ) may help. When I first developed POTS I ignored the symptoms and pushed through - that made it a lot worse. - If you do not improve despite doing all these measures and finishing college your cardiologist may consider a beta blocker or other medication to help you with your symptoms. I hope this helps. Please check our information resources under that tab on the top ribbon of this web site - there are many helpful articles. Best fo Luck with your graduation - and please let us know how things are going for you!!! Stay strong!