Pistol

@E pots - keep in mind that most SSRI's take weeks to kick in, so I doubt that switching to a different one would bring about a big change. I am not sure, best to ask the NP. Personally I found that once I don't respond to a med my specialist changed me always to something else. We can only try and learn, since we are all different and the way to find the right med is by trial and error. The fact that you drink so much but pee it all out leads me to believe that you need more tha simply fluid replacement. In my case it was the same - Whatever I drank came right back out. That's why my specialist ended up ordering IV fluids as needed to stop flares - the drinking was ineffective. It is important that you tell the NP that you are not improving despite the drinking these inhumane amounts of fluid. Maybe you can ask to have your RAAS checked ( Renin-angiotensin-aldosterone-system ). It is responsible for how much fluid you pee out and for releasing hormones that can increase your BP. This could affect your BP and HR etc.

@CDNPortGrlSound like a good possibility! That alone should give a doctor enough reason to investigate the possibility!!!!

@E pots - I have not tried SNRI's. I have always been on Lexapro and always tolerated it very well. My autonomic specialist ordered it after he diagnosed me with HPOTS. I do know of Others that take Prozac who have done well. Which SSRI helps you is highly individual, as all meds used in treatment of POTS are - we may share a diagnosis but he underlyong causes are different, and therefore we respond to no ONE med the same. Here is an exerpt for this article: POTS Treatment: Scientifically & Medically Proven • MyHeart "Selective Serotonin Uptake Inhibitors (SSRI’s) SSRI’s are a class of drug typically used as antidepressants. The production of serotonin is thought to be faulty in some patients with fainting spells and there has been some experience to suggest it may be of use in some with neuro-circulatory passing out such as that seen in postural orthostatic tachycardia syndrome (Goldstein et al)."

@CDNPortGrl - I am sorry to hear that you had such a bad reaction to the vaccine - but I am not surprised! POTS commonly gets triggered by a viral infection, due to the immune system's attempt to fight the virus. In the Dysautonomia International's 2020 DI conference Dr Blair Grubb talked about how they have found a link between auto-inflammation and POTS. Autoinflammation is different from auto-immune problems: auto-immune is caused by the immune system that produces antibodies. Autoinflammation is caused by the innate immune system - T-cells, cytokines etc ( which are the cells that initiate the immune response and also remember how to fight a virus ). While in some cases the onset of POTS is gradual, many of us remember the exact instance when the symptoms started - for example your bike ride. Whether it is the ride worsening a potential CSF leak or the activity triggered a flare - you might never find out what it was. I totally understand! I was told that the first shot just PREPARES the immune system for the virus, but the second shot actually triggers the response - that is why many people have a more severe reaction to the second shot. However - I would discuss it with your doctor before deciding not to have the second shot, since a COVID infection could be worse than the second shot. Your doc might be able to determine with you if the risk of a reaction to the second dose is less than the risk of getting COVID. -- Another thought: since you already have such a bad flare - would the second shot make a difference in symptoms? This is just a thought.

@CDNPortGrl - how are they planning on treating your CSF leak? Do you think fixing it will stop your POTS symptoms? Well - POTS is not rare, it is just underdiagnosed. When I first became severely symptomatic ( I had compensated for the symptoms for years, unaware that there was something wrong with me other than "Stress" ) no doctor at the hospital where I worked had ever heard of it. Now it gets diagnosed frequently, and I hear of more and more people in the community either being diagnosed with it or knowing someone who was diagnosed with it. Most docs don;t understand that there are so many different causes for POTS, CSF leaks being one of them, that they simply shut it in a drawer with the treatment being salt, water, compression and beta blocker. I hope they will help you determine if the CSF leak is the culprit in your case - the symptoms you describe sound highly suspicious of a leak!!!!!

@merkat30 - I have to use a wheel chair when I am in a flare b/c many times I passed out or had seizures when I have to stand in line, so I use it for stores or Dr offices when needed. One cardiologist - many years ago - told me that the reason I am having problems with my HR and BP is because I think I have to be in a wheel chair. If I just got up and walked around I wouldn't have any problems b/c there is physically nothing wrong with me. When I told him that my doc prescribed the W/C due to me passing out in public places, including his office so often, he replied "This is what these docs do that think POTS is real - they create mental cripples". He then went on to say that he knows all about POTS, and that it is a hoax. "Drink water, eat salt and go about your business like anyone else - and for crying out loud stop paying attention to your HR and BP - it goes up and down for everybody!" ---- He dismissed my NCS and POTS diagnosis and my many autonomic seizures as being "hysterical in nature" and finished off by declaring: "You are a victim of misguided specialists with too much time on their hands that want to make a name for themselves by inventing a phantom illness" Thank God I have a great PCP that listened to my rant after that visit and simply kept looking for a better doc to refer me to ( which i found ). So sorry merkat! I am sharing this experience to let you know that you are not alone, that there are docs like that and that you just need to keep looking for a good one.

@E pots - Lexapro is a SSRI

@Jeanee H - since you mention low BP and tachycardia: are you increasing your fluid and salt intake? This is the most important self treatment we can do for both symptoms, dysautonomia or not. Also compression hose can greatly improve the symptoms you mention.

Dear @dangernoodle - Have you checked with a home medical supply store? They can measure you for proper fit and order some if they don;t have the right size.

@Jeanee H welcome to the forum! Yes - dysautonomia comes and goes in many cases. For many people the symptoms get triggered, by different triggers, infections, stress, major life changes, hormonal changes, moving to a different elevation ... there are so many causes for flares! I know of some people that only get symptomatic when pregnant, or only during certain seasons. Often the trigger cannot be pinpointed, and other times we know exactly when the symptoms returned. I am so sorry that you are having troubles again! Were there any medications that helped you before? My autonomic specialist told me that POTS can change as we age, and as our bodies change so can the illness.

Thanks for clarifying, @CJ65!!!!!

@E pots - my insurance ( and so do most ) offers a case manager that works with you, your providers and pharmacies etc to manage your health. They can advise you on most issues that arise regarding your healthcare and providers. I just called my insurance and asked for the case manager, they put me right through. Especially if you are too sick to manage everything on your own they will help you, and they can even help you get help with certain services if you are homebound ( this completely depends on your insurance though ).

What the 😖😱😧!!!!

@E pots - whenever I got that bad I went to ER for IV fluids, which always makes me better. Nothing else would help once I got that bad for that long.

@Elizaangelica - I personally passed my Valsalva, but 2 TTT's showed dysautonomia. The Valsalva really simply shows whether or not your ANS is functioning properly. You can have dysautonomia with or without an abnormal VM. So - a good question to ask your doc!

@Elizaangelica - an abnormal Valsalva maneuver simply shows that your ANS is not functioning as it should. A "failed" TTT actually is not enough information - what did it show? It can give you several diagnoses, like NCS, POTS or OH for example. So the doc actually should be interpreting it into what exactly went wrong. Well - what symptoms DID YOU HAVE during your test? Did either one cause you to pass out, or make your HR race; did you feel dizzy or excited? The symptoms along with readings of your HR and BP during both tests will point towards what might be going on with your ANS. Treatment solely depends on the underlying mechanism and your symptoms, and more often than not finding a proper medication regime is time consuming and frustrating! I would ask a lot of questions when you go for your follow-up appointment with the cardiologist. Best to write them all down beforehand! Some doctors are good at explaining and others rush through, so having a list of questions can assure you get all the answers you are looking for!!!!!!

Hello @cmep37 - I am so sorry this is going on! I can imagine how draining and stressful this must be! -- I too cannot tolerate stress of any kind, but luckily my husband does anything stressful for me. However - when I do get stressed, b/c I could not avoid it, then I try to retreat whenever possible and stop doing anything else - no cooking or excepting phone calls or cleaning or anything ,,, just rest, door closed. And then I am usually so worked up in the evenings that I cannot go to sleep, so for these instances I have a prescription for Lorazepam. This helps to relax me enough to fall asleep. But stress like you are having right now usually puts me into a flare 😢

@OSucrose - I agree with @cmep37, checking your orthostatic vital signs could give you a pretty good idea what causes your symptoms. vertigo, as well as all of the other symptoms you mention, can be caused by POTS. If your HR goes up at least 30 BPM, or above 120, upon standing and remains elevated in the absence of a significant drop in BP it is considered POTS. I have not heard much about Cleveland clinic being an autonomic clinic but I assume their cardiology dept should have experience with diagnosing POTS, so I think they should be at least able to diagnose you.

Yes, I agree with @POTSie78 - usually it is recommended to wear compression garments all day and to take them off at night. Thigh-high is recommended - generally the knee-high is not providing enough compression for POTS, it is mostly used for prevention of blood clots in the legs. For POTS purposes the more area is compressed the better the results.

@Tintag - welcome to the forum! The feeling you describe - pounding heart beat throughout the body - can be caused by low BP. In some people the BP can drop at night, and this will cause the heart to beat extra strong. Weirdly though - high BP can cause the same sensation, due to the pressure in the blood vessels being too high. If your BP goes up while lying down it is called supine hypertension. So it is a very good idea if you could measure your BP when you experience these symptoms. The best - and proper - test to make sure there are no arrhythmias causing your symptoms is a halter monitor. These are usually ordered for 24 or 48 hours or even for one to 3 weeks. This test will monitor your HR continuously and the report would show any underlying arrhythmias. Possible, but IMO it should be investigated further. Are you seeing a cardiologist?

@Knellie - assuming you have a PCP you can go to him/her, explain your symptoms and what you have found out about CSF leaks, and how your symptoms are in line with CSF leaks. Then ask him/her to refer you to a specialist that can diagnose this condition. He then will send a referral request along with a letter requesting to rule out or diagnose CSF leak. Especially after telling your PCP about the bad experience with the ENT he/she might sympathize. Referrals to specialists are the responsibility of PCP's, so it should not eb something you have to fight over.

@Knellie - I am sooo sorry that happened to you! Yes, there are too many ignorant docs out there! I also had to read up on my symptoms and actually diagnosed myself with HPOTS before I got to the specialist ( he confirmed it though, after 5 cardiologists gave me a pat on the head and smiled at me ). Our medical community needs to come out of the caves and realize that they do not have the sole lease on knowledge! If a patient shows up and has done the homework and has legitimate symptoms, but has the audacity to suggest - or ask about - a diagnosis that correlates with these symptoms ... how dare they ! I have found it much more likely that a doc gets his rear-end hurt over this than that he would take us serious. Just get another opinion. The next doc may be better at treating patients! Also - you can always ask your PCP to write a referral letter that directly asks the ENT ( or neurologist or whoever he refers you to ) to rule out CSF leaks based on your symptoms. That way the doc may take you more serious. Again - I am so sorry!

@dancer65 - this is so true! I too get irritable when I over do it - I think it is because of the overactive ANS making too much adrenaline. This causes the vessels to constrict, less blood flow to the brain; brain fog and less ability to respond to multiple stressors at the same time ... when i have to cook with more than one pot on the stove I get so overwhelmed that I will rip the head off of anyone who asks me a questions or interrupts me ... a sure sign that I have to stop! My husband and daughter know this, so they jump in and finish the cooking process for me 💗. A while of resting and "cooling down" and I am good to go again!

@E pots - it is common practice these days to have NP's see patients under the direction of MD's. Nurse Practitioners are allowed to assess, diagnose and prescribe medications. They can refer to the neurologist but otherwise they can work independently. I know many, many NP's that are very capable, and in some cases I prefer the NP over the actual MD 🤫! However - whether you see a MD or a NP, there are always uninformed and ignorant ones. Unfortunately with POTS we more often than not have to contend with health care providers that don't take us serious or don't know how to help us. If you feel a doctor does not listen to you, or does not know anything about dysautonomia, it probably is a good idea to switch. Most EP's have minimal knowledge of POTS, if you are lucky they will diagnose you based on the results of a TTT and then prescribe the ususal - beta blocker, salt. fluids, compression. If that does not help it's all in your head ( easy way to wipe their hands off us! ). Unless you are lucky and find a good one it is usually best to be referred to an autonomic specialist ( see the list of specialists under our physicians tab ). The problem is that it normally takes a long time, up to a year, to get in with a good specialist. This is where I would simply hand him/her a list of all of your symptoms, along with a listing of what a "normal" day looks like for you. For example: stay in bed all day except for bathroom breaks and making food, which is very limited. The symptoms should be addressed one by one ( demand this ). And If he/she does not address this I would ask to see the neurologist. You are already an established patient, so there should be no reason why you would have to wait all that long for that appointment. But most likely it will get the NP to acknowledge your condition.

Do you have anyone who can go to appointments with you, a friend or family member? It is always best to have someone who can jump in when you don;t remember what to say. Also - before every appointment I make a list of symptoms and questions. I keep a note book and throughout the day if a question comes up I write it down. I have a page for every specialist. When the appointment comes I just tear out the page and take it with me. That is the only way I can remember all the things I need to talk about!