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@Stephanieann8131 - is it possible that your resting HR has always been that high and you are so used to it that you feel different when your HR is normal? Maybe that is why you felt faint - your body is not used to going below 90 - ? Now I can see why you don't want to take meds that bring your HR down to normal! -- I have the same thing with my BP. I always had a very low BP and only when I started with HPOTS did my BP ( and HR ) go way up. I feel absolutely HORRIBLE when my BP goes up! Since I am well controlled with meds right now my BP runs as low as 80/50 - most people would feel very faint, but I feel great! So I don't go by numbers, I go by how I feel. If my BP goes around 120/70 I start to feel it. Yes - POTS causes orthostatic symptoms - I don't believe IST does. Do you still have orthostatic symptoms, even with Florinef?

Hello @endless_august - welcome to our forum! I am so sorry you are experiencing all of these strange symptoms! --- When reading your post the only thing that came to mind is some type of neuropathy. You mentioned a history of genital herpes - a family member of mine is suffering from that and he has weird skin sensations including unexplained pain. He had shingles once and since then he has rashes and pain between his shoulder blades. --- Personally I would not be satisfied with the neurologists interpretation of your MRI - I would seek a second opinion. It sounds to me that injury in T1-T2 could potentially cause symptoms, but I am not sure. I do know someone who had unexplained pain in his chest and they told him he was seeking pain pills when it turned out that he had something wrong with his back and ended up with back surgery. Also - my Physical Therapist told me once that since you are supine during a MRI anything pressing on your spinal cord can easily NOT be touching it due to the posture but go back once you stand up. Sorry I don't have more to say, except that I would not simply go with the opinion of one neurologist in your case. I hope you get some answers!

Another thought - has your doctor considered IST ( Inappropriate Sinus Tachycardia )? POTS and IST often get confused since both share tachycardia, but in IST the resting HR is usually high, whereas in POTS the resting HR is normal.

Hello @Stephanieann8131 - welcome to our forum! --- Yes, I feel faint and have chest pain as well as breathing difficulties when I have increases in HR and/or BP. I was told that this is due to changes in circulation in the chest from dilating or constricting blood vessels. I am not sure why you would be concerned about lowering your HR when your resting HR is so high? 85 to 95 BPM when sitting seems very high, Are you sure your sitting HR is 95? From 95 to 120 is 25 BPM - for POTS the HR increase is 30 BPM or more within 10 minutes of standing. I am happy to hear that you have been experiencing mild symptoms, and I hope it continues! Are you experiencing any unusual stress or change in diet, exercise or health that could contribute to your current increase in symptoms? Have you checked your BP when you feel faint? I can feel that way with either high or low BP.

@chzrles - that is a symptom of dysautonomia, so either an autonomic specialist or a neurologist .

I am declared homebound by my PCP, since I can no longer drive or shop, and Dr appointments are very difficult for me. That's why I am able to get in-home PT. Your PCP should be able to order home PT if the notes that you currently are unable to travel. I would chock with your insurance what their requirements are for in home PT and then ask your PCP.

@MTRJ75 this is what happens to someone who is deconditioned. The body is no longer asked to do anything, so the slightest movement is perceived as unsurmountable and therefore causes exhaustion and fatigue But the way to get back on your feet from that is - well .. get back on your feet! If 3 minutes upright are too much for you do 1 minute a day, then one minute twice a day, then 2 minutes twice a day and so on .. you have to gently coax your body to be able to tolerate the slightest activity again. And also - avoiding doing things that are too much is just as important. So if you take the dog out to do his business - that' your exercise, rest afterwards. But don't get stuck on the couch then - after a long rest get back up for a minute or so. For me deconditioning also caused bad joint and muscle pains. Exercising made that better - a lot better! But initially it hurt more because I had not used my muscles and joints in a while. My PCP does not prescribe pain pills for me b/c they make me sleepy and keep me being from being active. I use Turmeric and a muscle relaxer ( at night only ) an sometimes Motrin. But really I have found that mild exercise is effective for me.

@MTRJ75 - I am sorry if I caused confusion. The whole point of my response was: acceptance is NOT giving up, NOT envisioning a life on the couch. It is to stop fighting POTS in a way that is unproductive and overwhelming - but rather realizing that symptomatic treatment may be what we need to go on. There ARE many meds that will help for specific symptoms but not CURE us. Being stuck on the couch means you are giving up - acceptance means you get back up and look for ways to go on. I don't know what meds you have tried so far, or why you stopped them. There are many meds that help, we just have to try them and understand that one pill will not give us our life back. Being inactive is the enemy of POTS, so it is important that you exercise, even if initially you have to do it on the couch. We can recondition ourselves - we dont need a pill for that - just patience. When I was in your shoes I had a PT come to my house and show me exercises that strengthen me, and I could do them in all positions. I started to exercise several days for a few minutes every day and then graduated to exercising sitting, standing and eventually walking. Going outside for even just a moment helps tremendously - there is something triggered within the body when we get hit by cold air or sun hits the pupil. I am glad you have a physician that has been there for you. Maybe at this point it is necessary to simply treat certain symptoms to get you active again and then, once you regained some of your strength and stamina, go back to introducing - and maybe even re-introducing - therapeutic meds. I have found that what was ineffective at my worst can be therapeutic once the body is stronger again.

@MTRJ75 - it is not giving up. It means you are ready to get to acceptance. When I finally realized that there was no huge "healing moment", no "right pill", no "wonder treatment" and that I would have to live like that for the rest of my life I too thought that I was giving up by looking at that reality. But in the end it brought me acceptance - and with that came finding a way to live not only WITH dysautonomia but also DESPITE of it. Once I realized that there were not only things I could NOT do but also many things I COULD do,, and I found that fighting POTS had taken so much energy and sheer Will that facing my limits was almost a relief. And I continued my research but now it was less for answers but rather for ways to get better. And I stopped looking for the miracle that someone would provide and started to find ways to go on with my life and not think of myself as UNable - just DISabled. That's pretty much typical POTS treatment for most of us - once the docs ( if you are lucky enough to have found one that knows even what treatments to try ) tried everything they have heard of and nothing works they cannot do anyting more but either refer us to an autonomic specialist that has more experience than them - or simply treat symptoms. It is well known that POTS etc is extremely difficult and frustrating to treat - one reason most docs won't touch it with a ten foot pole!

@p8d - for normal people the orthostatic adjustments the body makes occur within 1 minute, so definitely we have to take them after 1 minute ( before that the readings will be inaccurate due to the adjustment period ). In dysautonomia the BP or HR can either drop ( OH and NCS ) or increase within 10 minutes, so it is important to take it again after 10 minutes. To find out what changes occur at what point we should take them at 3 and 5 minutes as well. In POTS the HR is elevated within but also AT 10 minutes - meaning if the HR is up at - for example - 4 minutes but goes back down at 9 minutes it is not POTS. So it os important to check both HR and BP at all of those different times.

@MTRJ75 - IST is an arrhythmia that CAN be caused by dysautonomia but is not POTS. Usually it originates within the sinus node. The biggest difference is that with IST the resting HR is high as well, whereas in POTS the tachycardia occurs upon being upright. However - frequently POTS gets misdiagnosed as IST and vice-versa. A TTT usually clears up the confusion.

@appoi789 - if your neurologist suspects dysautonomia it is very important to find out WHAT KIND it is. The most common types of dysautonomia ( POTS and NCS ) affect the cardio-vascular system due to dysregulation of different mechanisms. The most typical symptoms are changes in HR and BP. Then there are MSA ( Multiple System Atrophy ) and PAF ( Pure Autonomic Failure ) with a different set of symptoms. To diagnose dysautonomia you normally undergo autonomic testing ( see this article ) Autonomic Testing for Dysautonomia - Dysautonomia, Disorders, Diagnostics & Info - Dysautonomia Information Network (DINET) Autoinflammation is different than autoimmune, so the usual labs for AI would not show anything and is most likely a bit premature at this point. I would simply ask the type of dysautonomia and ask to be referred to an autonomic specialist ( unless your neurologist is very experienced in this diagnosis ). Also - what types of treatments he is considering? Has your gastroenterologist ever talked to you about EPI ( Exocrine Pancreatic Insufficiency )? This can certainly be a cause for some of your symptoms and can be caused by pancreatitis.

Dear @appoi789 - welcome to the forum, but I am sorry that you are unwell!!! --- It is quite common to develop dysautonomia after an infection - ANY infection, really. In most cases they say it follows a viral infection, but any infection can cause stress, and that can set it off. Recently the specialists have found that dysautonomia can be related to autoinflammation. And inflamed pancreas due to sludge certainly is severe enough to possibly lead to dysautonomia. However - pyloric stenosis and atrophic gastritis are not - as far as I know - related to dysautonomia. Slow functioning of of the stomach ( as you describe ) can possibly be due to gastroparesis, a common problem in dysautonomia. I would talk to your GI specialist and discuss his findings.

@chzrles - have you considered antihistamines for the itching? I have itchy skin and also have allergies and Benadryl or claritin usually help.

@Amyschi - 🥰

@Roxy -I have not tried any food-by-mail programs but have you tried to place an order with any of the big grocery chains ( Trader Joes, Walmart, Whole Foods etc )? You can order online, have it sent to your home ( in some cases ) or ask someone to pick up the order for you. Also - what I do is I use my instapot a lot for cooking since it is quick and does not require a lot of time at the stove. I also cook in advance and freeze portions, so when I don't feel good we can just take out a meal and reheat. Good Luck to your husband with his upcoming surgery!

@CallieAndToby22 - there are other ways to give IV fluids, not only a port. You can have a PICC line, that gets thread into your arm and goes to where a port ends ( in the SVC ). Personally, since you suffer so much I think you would be a perfect candidate to weigh the benefits of permanent or temporary IV access higher than the risks ( blood clots and infection ). But this decision is entirely up to your physician.

Dear @sophiagrace - after years of having to go to ER and being admitted to hospital every 6-8 weeks due to syncope, seizures and inability to be upright from POTS ( each time getting IV fluids with complete improvement ) my PCP finally approved me for a port and home infusions. They have changed my life! I have had the port for over 2 years and get 1-3 liters of LR every week, I have only been in hospital once since starting the fluids, and barely ever have seizures or syncopal episodes. My BP has come down to normal, even low, levels and I could stop and minimize some of my meds. One of the reasons my PCP finally gave in to my request for a port and home infusions was that often ER docs and hospitalists refused to give me IV fluids b/c I could drink ( I always peed all oral fluid out faster than I could take it in, but not so with the IV fluids ). Of course it was already proven and well documented in my medical record that IV fluids worked like a miracle on my often unexplained severe POTS symptoms, so I did not have to convince him of that - only that I needed them weekly rather than only during flares. They do not only help as a treatment but also as a prevention of POTS symptoms. Here is an article you can show to your doc that was written by Dr Blair Grubb, one of our Top autonomic specialists internationally. It explains that IV fluids are a proven, effective and approved treatment option for POTS, especially of medication refractory. Effects of intermittent intravenous saline infusions in patients with medication-refractory postural tachycardia syndrome - PubMed (nih.gov) Before the port I had an order to get 1-2 liters weekly as needed for 4 weeks when in a flare, but I always had to wait for the flare to come before I could get them as an outpatient. Now, since I get them every week, I don't flare as frequently and not as severe as before. I hope this is helpful to share with your physician!

Hi @Amyschi - it was explained to me that in my case a sudden drop in BP triggers the ANS to overcompensate by activating the sympathetic NS, which dumps adrenaline and causes constricted blood vessels increasing HR and BP, tremors and chills and other symptoms. Afterwards I often feel like I have the flu - like a fever but no temperature. More likely the inability to sleep comes from the high adrenaline, so you are already in a flare when you cannot sleep. This happens to me when I get overstimulated - the levels go up and don;t come down, so I can't sleep . That in turn makes everything worse - like a vicious cycle!

@Mady - I am so sorry you are feeling this bad!!! - Yes, it sounds like a flare to me. One reason your oxygen levels could be low is that when your HR goes up it is often in response to less circulation ( from either low BP or excessive vasoconstriction ). In both scenarios the body tries to circulate the vital organs and fails to circulate the peripheral body - meaning there is not enough blood reaching your arms and legs. This will often cause cold hands and/or feet and the oxygen probe used to test your oxygen levels cannot adequately detect your true O2 levels. Sometimes you can use the ear instead, but that does not work for me either since my ears also are cold when that happens. What I have found is that often with a flare this bad I had to change or increase medications. Depending on your particular type of POTS you may need a different med, as determined by the physician that is treating your POTS. Also - increasing water and salt intake, wearing compression hose and exercising daily but carefully to your tolerance can improve your symptoms to a degree. When I am bed bound I usually get up every 30 minutes for even just a minute, and I do leg strengthening exercises in bed, as well as crunches to increase circulation and prevent abdominal pooling when getting up. It is important to notify your doctor of your symptoms. When I am too bad to get to my PCP he schedules a phone visitation for me, especially during COVID most docs are open to this option. I hope you will feel better soon!!!!!!

Hi @CallieAndToby22 - oh my, you sound so frustrated and miserable! I am sorry. --- I have found that changing any medication can cause POTS to get worse. I too have IC, along with inflamed joints and other generally inflammatory issues. My autonomic specialist states that they have found a link between autoimmunity ( having to do with the innate immune system, not autoimmune disease ) and that would explain so many of my symptoms and flares! He is putting me on Plaquenil ( Hydroxychloroqine ), but I have to have an eye test first, so haven't started it yet. He said it will help for the POTS as well. I think being in a constant state of inflammation causes so much stress on the body that it causes POTS symptoms. Well - mostly I try to avoid it! I understand that is not very helpful to you but for me it is vital that I stay within my limits. I only do thn=ings like doctor appointments or other trips out of the house when I am stable, I cancel them if it gets too much. I rest if I know I am stressed - or will be - and exercise carefully. When I was at my worst and still working my seizures and syncopal episodes were uncontrollable. What helped to minimize them was becoming disabled and housebound ( which enabled me to stay within my limits, therefore avoiding triggers ), my medication combo and - most of all - weekly and as needed IV fluids. They also help with stress!!! Having my cardiovascular system stabilized prevents the dumping of adrenaline ( for me ) and therefore I can endure some stress. If you have never tried them before I would ask your doc. In many cases IV fluids can help restore normalcy of the ANS, even if just used as a last resort. Most docs order them weekly for a month in flares.

@Nin - I found this Researchers from the Barrow Neurological Institute in Phoenix, Ariz. reviewed videos of 221 people having seizures. They found that 50 of the 52 people having non-epileptic seizures closed their eyes during the event, while 152 of 156 having epileptic seizures kept their eyes open or blinked until the seizure was over. Epilepsy or Psychological Seizures? - WebMD www.webmd.com/epilepsy/news/20060612/epilepsy-psychological-seizures

Hello @bookworm818 - I get short of breath when my BP is up or when my HR is up, but not wheezing. I think the shortness of breath you describe sounds more like asthma. In asthma, often we develop tachycardia because that comes with breathing problems. In POTS we often develop shortness of breath WITH the tachycardia, both from a change of circulation to the heart and due to the accompanying anxiety. I myself do not have asthma but my daughter and BFF both have it and I am very familiar with it. My daughter also has POTS and takes an Albuterol inhaler as needed ( Caution - this med causes tachycardia as side effect ). She also took Singulair most of her childhood ( no longer needed since her asthma is allergic in cause and her allergies have been treated successfully ). Are you seeing an allergist for your asthma? They usually are the ones treating asthma. A beta blocker is appropriate for POTS related tachycardia, and your cardiologist should know which ones are safe to take with asthma, not all beta blockers are the same. Actually - they all differ quite a lot, and many POTS patients tolerate some and not others. I would give it a try if I were you.

@Nin - I have autonomic seizures and I am told that my eyes remain open during them. I definitely do NOT have epilepsy, that was ruled out. Also my autonomic specialist has witnessed one of my seizures and said it looks pretty much typical for an autonomic seizure.

@merkat30 - i am sorry all o this is happening to you right now. I hope your husband will recover quickly. Best wishes 😘