Pistol

Hi @tjf0220 - too had a severe flare from prednisone. Yes, digestion can cause anxiety. This is because when we eat the parasympathetic NS causes most of the blood to be diverted to the GI system. That causes - of course - less circulation to the brain etc., and can cause overcompensation by the sympathetic NS, causing anxiety, diarrhea, palpitations, tachycardia, chest pain and other POTS symptoms. It is very important to be mindful of what you do during a flare: I rest and avoid stimulation but do exercises in bed and get up every 30 minutes or so, do leg exercises to stimulate circulation, drink LOTS of fluids and increase salt ( if approved by cardiologist ) and wear compression hose. I was completely out of circulation during my prednisone flare, and the first time actually ended up in the hospital b/c I could not get up at all and took autonomic seizures. The second time I had one after Prednisone ( I now am not allowed to take it unless it is an emergency ) it was a bit less severe. Wishing you a quick recovery - hang in there!!!!

@HOTLIKEFIRE - my MIL has lymphoma and Sjogrens ( AI disease ) and her docs refused to give her the shot until she got the OK by her rheumatologist. My personal opinion is to wait until you see the rheumatologist. Also - leukemia is also a reason to check with the oncologist before getting the shot.

@HOTLIKEFIRE - have you been checked for Viral infection like Lymes disease etc?

@Nin - my sister has POTS and she swears by abdominal compression. She says it helps her a lot. I cannot tolerate it ( or any other compression hose ) b/c I have HPOTS and Reynauds syndrome. I have heard from several people that it helps them, albeit a bit uncomfortable and hot in the summer!

Hello @MMarianne - welcome to this forum! I am sorry you are having such a hard time. Yes, I have fluctuations in BP, and I am on a beta blocker. Unfortunately not all beta blockers are equal, and we often need to try a few before we find the right one. I tried Metoprolol, Propanolol and Bystolic - all of them were either ineffective or dropped my HR too low at times. What helps me a lot is Carvelidol - it has both beta and alpha blocking properties. I used to take more BB when my HR and BP were up and less when they dropped - but this only caused more chaos. My autonomic specialist explained to me that fluctuating too much with our meds will often make the "disorder" part of POTS worse - we are thriving to find balance, so changing our meds does not really help with that. In my experience if you have to keep changing the dosage obviously the med is not helping, since if it was helping you would not have these ups and downs. I have found that for most of us there is no ONE med that is the quick fix - it takes a finetuned mix of meds, lifestyle adjustments ( rest and exercise to our tolerance, salt and fluid loading, compression hose ) and the acceptance that there will be flares that we will have to adjust to. Most docs and patients think that treating the HR is what will fix our symptoms too. But this is not true: the HR is only ONE symptom, and treating it solely does not fix the other symptoms, such as lightheadedness, fatigue, exercise intolerance etc. For many patients it takes other meds, not only cardiac meds - for example SSRI/SNRI's are very effective for all types of POTS in most cases. This brings me to this: Most cardiologists will only treat the cardiac symptoms of POTS, since that is their field of expertise. However - POTS is a syndrome that does not have only cardiac symptoms but is rather a mix of cardiac, neurologic and endocrine symptoms. Therefore you are in better hands with a dysautonomia clinic that treats ALL of the symptoms. I am not sure how long you have been diagnosed with POTS but I assume you have not yet been properly adjusted with meds. For most of us it is a predictably long and frustrating process ( for us as well as for our docs ) to find the right treatment. Keep a log of your symptoms and Vital signs, take your meds a prescribed ( for now ) and take this to your Follow up appointment. It is important for the doc to see how you respond - and this cannot be established if you keep changing your meds. Wishing you all the best - hang in there!!!!

I agree with @yogini that you should report this finding to your physician, in case there is a problem with your carotid arteries. I feel pressure and fullness and sometimes pulsating in my left neck often and this is harmless in my case - but I have been thoroughly evaluated for this and have HPOTS, so it is a common symptom.

@yogini @Soph1802 here is the current diagnostic criteria for POTS, from this article POTS: An overview - POTS - Dysautonomia Information Network (DINET) "The criteria for diagnosis of POTS is: (1) a sustained increase in HR of at least 30 bpm within 10 minutes of standing (often with an absolute upright HR ≥ 120bpm); (2) in the absence of sustained orthostatic hypotension (drop in BP > 20/10mm Hg); (3) with symptoms of orthostatic intolerance for at least 6 months. In patients < 19 years of age, there is a higher HR threshold for POTS (increment  ≥40 bpm or absolute uprights HR  ≥ 120 bpm) due to physiological orthostatic tachycardia in adolescents and children (Singer et al., 2012) (Arnold, Ng, Raj, 2018)" You CAN have OH in addition to POTS though, like in your case, Yogini. The reason why it is important to consider the BP in a POTS diagnosis is that an increase in HR in response to a drop in BP is NORMAL. In POTS the increase in HR without a significant drop in BP is a significant sign in determining the diagnosis. I agree, there is a lot of overlap in treatments in all dysautonomias. However - the mechanism of the disorder determines the treatment. For example: if the dysfunction stems from excessive vasodilation the treatment would point to vasoconstrictors, such as Midodrine or Florinef. Betablockers are commonly prescribed for the tachycardia, but depending on any alpha or beta blocker sensitivities may or may not be effective. If the dysfunction is caused by excessive sympathetic activation the symptoms would cause vasoconstriction, in which case the above treatments would make symptoms worse. In these cases vasodilators like calcium channel blockers would be more effective. Note that in the hyperadrenergic form of POTS there commonly is an INCREASE in BP along with the tachycardia.

@Soph1802 - yes, it is totally possible b/c I have both diagnoses! My first TTT simply showed NCS but it actually showed POTS first then NCS, the cardiologist was not aware of POTS at that time ( 2009 ). My HR went up, stayed up and then plummeted, along with my HR. Later I was diagnosed with HPOTS by my autonomic specialist, he checked neurotransmitter levels and the Adrenaline was very elevated upon standing. In your case it sounds like the culprit are the blood vessels that are not constricting properly, hence the drop in BP in response. The previously mentioned meds all work for that.

@Soph1802 - your doc is right, POTS is diagnosed by an increase in HR sustained WITHOUT a significant drop in BP. However - I have both HPOTS and NCS ( neuro-cardiogenic syncope ), the latter causing syncope by suddenly dropping both HR and BP. In normal people the HR and BP adjust upon standing within one minute and normally do not cause symptoms except for the occasional dizzy spell upon standing up too fast. Either way - you definitely suffer from dysautonomia and treatment for POTS and NCS are similar. Most common treatments for POTS with pooling and LOW BP are beta blockers, Midodrine or Florinef, SSRI/SNRI ... there are more but these are the ones most commonly mentioned. Has your doc prescribed any of these meds? Florinef and Midodrine especially work for people with drops in BP, so they might very well help you with some of your symptoms. For blood pooling compression hose of 30-40 pressure is recommended and can help greatly for the pooling and BP drops, as well do salt and fluid loading. You might find this article helpful: https://www.dinet.org/info/ncs/neurocardiogenic-syncope-info-r10 Don't worry - I used to faint all of the time from NCS, and took seizures from HPOTS. Today these episodes are rare for me, thank god. There is a lot of reason to be hopeful!!!!!

@Churt - a SSRI or SNRI might help. I take Lorazepam 0.5 mg at times when I am too wired to fall asleep, and it helps. But I don;t take it often due to the high risk of dependency. I used to not be able to sleep, mostly waking up after 3 hours, when the adrenaline level is supposed to drop to accomodate REM sleep.

@Phyllis - I too have seizures and neuro-cardiogenic syncope as well as HPOTS. I pass out when my HR drops and I have seizures when my BP goes high. I am unfamiliar with Ginkgo biloba and it's effects on circulation, but personally I am very careful with natural medicine, mostly because of the medicine sensitivity that comes with dysautonomia. I am not opposed to natural medicine ( I take Turmeric for arthritis ). Make sure you check any potential interactions with any meds she might be taking. I hope it helps!

@Churt - I take Carvelidol ( beta blocker ), diltiazem ( calcium channel blocker ), IV fluids up to 3 x a week, Ritalin, Escitalopram ( SSRI ) and other meds not really prescribed for POTS. I also was deficient in B12 and Vit D, so I had those deficiencies corrected.

@merkat30 - I have this happen to me, My HR will speed up and then plummet and I pass out. In my first TTT this happened and I was diagnosed with NCS ( neuro-cardiogenic syncope, also called vasovagal syncope, a type of dysautonomia ). When I am in a flare ( probably caused by the virus in you ) I faint more often, so the NCS gets worse. Other times the HPOTS worsens and I have problems with seizures and high BP.

@peachychou123 I will send you a pm. You might want to read this: You’re Not Alone: Understanding Depression and Chronic Illness - Mental Health and Chronic Illness - Dysautonomia Information Network (DINET) I Can't Just Relax - Understanding Anxiety and Chronic Illness - Mental Health and Chronic Illness - Dysautonomia Information Network (DINET) What's Next? Coping with Uncertainty When You Have Chronic Illness - Mental Health and Chronic Illness - Dysautonomia Information Network (DINET)

hi @Knellie - I don;t have any Input on MCAS but the above symptoms could be Reflux related. I know several people who saw an allergist for those exact symptoms and he said it is reflux. My F-I-L also has this ( throat burning and feeling like it closes up ) as well as cough and it is GERD. Since you have eosiniophilic esophagitis - could that be the case for you?

Well - I am considered fully disabled, so I am homebound. But with help of meds and IV fluids ( I have a port and get fluids when I need them ) I have been able to avoid seizures and syncope ( which I used to have all of the time ). I can pretty much take care of our household chores but my husband does all of the driving and shopping. When I have a good week I can garden ( my passion! ). Compared to what my life used to look like I consider myself lucky, and I feel pretty independent. Regarding sleep - insomnia is a typical problem of POTS and it is hard to get ahold of as long as the POTS is not controlled. I used to be so wired from the high adrenaline levels that I fell asleep almost instantly but kept waking up after 3 hours - the time when normally the adrenaline drops to allow REM sleep. The SSRI Lexapro has helped me with that, as well as the IV fluids ( they help with ALL of the POTS symptoms for me ). Other people do well on Wellbutrin ( Bupropion ). Melatonin also helps many ( like serotonin a neurotransmitter ). And a well-followed through sleep hygiene is very important - like avoiding electronics or alcohol before bed, going to bed roughly at the same time every night and getting up around the same time as well, sleeping in a dark and quiet room if possible ( that of course will not be possible with that beautiful baby girl of yours!!!! )

@ramakentesh - a SSRI/SNRI is a good treatment possibility for those symptoms!

@Glassywood - welcome to this forum, and I am so sorry you are dealing with all of this!!! I too have similar symptoms as you - IC. IBS, arthritis and NCS ( neurocardiogenic syncope, same as vasovagal syncope ). as well as HPOTS. I am 54 and started getting severely ill when I was 42. --- I understand your issues with anxiety, and when I was at my worst I too dealt with that. I found relief when i became disabled and could avoid pushing myself. I now lie down to rest both to prevent symptoms as well as to stop them. I find that resting a lot and doing certain exercises ( I have a rowing machine and also take short walks ) helps a lot with the symptoms, anxiety and brain fog being some of them. Since you are hightly medication sensitive meds may not be an easy option for you but I am on Ritalin for the ADD and brain fog and ( rarely ) take a low dose Ativan to calm down when my Hyperadrenergic symptoms kick in. Mostly though I find rest when anxiety or overactivity kick in helpful, if I do it as soon as I feel uneasy. I retreat into my bedroom and drink a cup of tea or close my eyes. When I am rested I get up again and do whatever I was doing. Deepbreathing exercises also help. Here is a link fro our Information Resources section that you may find interesting: I Can't Just Relax - Understanding Anxiety and Chronic Illness - Mental Health and Chronic Illness - Dysautonomia Information Network (DINET) Just my cup of tea … self-help options for managing POTS symptoms - POTS - Dysautonomia Information Network (DINET) Finding Balance by Trudi Davidoff - Newsletters - Dysautonomia Information Network (DINET) Best of Luck to you!!!!!

@peachychou123 - Oh my, what a scary disaster! I feel for you, although it was a bad idea to attempt the walk I can see that staying in that car was an equally bad idea!!!! -- I have been in similar situations where I had to willingly make a bad choice and pay for it with weeks of bedrest. I am glad you made it home OK and that you can find the necessary time t rest and slowly recondition. One word of wisdom: if you are discharged from the ER but still find yourself as unstable as you were ( and a BP of 130/118 whilst being symptomatic is NOT NORMAL ) then going back would be the thing to do. Any patient that comes back to the ER within 24 hours has to be checked more properly and warrants admission to the hospital. You obviously were to sick to go home and the ER just did not know what to do with you ( they probably did not see the emergency b/c they did not know about POTS ) and going back would not have been unreasonable. They really should give you IV fluids when you are so bad, since that is a known and proven way to temporarily improve a POTS flare. I was in the ER every 6-8 weeks when I was at my worst and IV fluids always turned me around. You may want to discuss that option with your doc. With a prescription you can get IV fluids in most Urgent Care centers or in the ER. I wish you a speedy recovery!!!!!!

Hello @EH89, and welcome to this forum! -- I have HPOTS, and had it since childhood. I was diagnosed in 2012, and my symptoms started after child birth. I suddenly became so hyper, tired all the time, and i also developed joint pains. It very well could be a flare due to the changes your body went through after giving birth, and it is possible that it will improve. Many women do get better. For me that was not the case, and I became chronically ill. My first thought also went to Sjogrens. Have you seen a rheumatologist? There are specific tests for Sjogrens. I was tested for autoimmune disease by a rheumo due to elevated ESR and continouus joint pains and swelling ( I tested negative for autoimmune but my autonomic specialist placed me on Plaquenil for the joint pains and it helps. ) They have found that POTS is highly related to auto-inflammatory issues ( not the same as auto-immune ). Oh - I sooo relate! When my daughter ( now 16 ) was that little I worked full time and on days off had barely enough energy to take care of her - there was not an ounce left for my poor husband! I too felt like an old woman - at 37! I told my PCP that I used to be like a sportscar and now felt like a 1966 pick-up truck!!! The hyper-surges, nervousness and feeling overwhelmed switched existence with extreme fatigue and weakness very fast, and I became extremely irritable. Think: when our ANS goes in overdrive we are constantly trapped in the fight-and-flight response. I explain it like this: if you are fighting off a mountain lion you find questions about what's for dinner quite unimportant. I used to snap at people a lot, and it took all of what I had to take care of my baby. There is hope, and it CAN get better. First of all: get someone to help with the baby. You need time to retreat and rest when things get overwhelming. Lie down WITHOUT INTERRUPTIONS and calm down. Then get up slowly. Do only one thing at a time - I find that doing this helps avoiding surges. When you can concentrate only on the task at hand you can be calmer. Drink a LOT of fluids and increase salt ( check with doc first if you are nursing ). Wear compression hose - this is very important and can help avoid surges. If you have problems with fast HR ask your doc to do orthostatic vital signs - lying, sitting and standing at 1,3, 5 and 10 minutes. If you HR goes up 30 BPM or more it is considered POTS. Then ask for a Tilt Table Test - the proper form of the same test. This test is used to make the official diagnosis. Next would be medication: the most commonly prescribed med is a beta blocker, but there are many others used, different ones for different mechanisms. Also - getting checked for autoimmune disease and then treated for it can help stabilizing your POTS symptoms. If you are nursing it is possible that the added demands on your body are triggers. Check with your OB-GYN if this could be the case. Some women find that once weaning off the symptoms improve to a degree. Here are some articles from our Information Resources Site that you might find helpful: Hyperadrenergic POTS (hyperPOTS) An overview of a POTS subtype - POTS - Dysautonomia Information Network (DINET) What are the Mechanisms of POTS & other forms of Dysautonomia? How is POTS Diagnosed? - POTS - Dysautonomia Information Network (DINET) I wish you well, and hope that you will improve. I was hopeless and became depressed when I found myself unable to cope and function when I first became ill - but it did get better for me. I am one of the unfortunate people that got stuck with POTS as a chronic illness, but today I live a fullfilling life ( despite my limitations ). Once your AI issues are diagnosed and treated you might find yourself in better place. Best of luck - this forum is a good place to share how you feel, and to ask questions. May here have been in your shoes! Stay strong - 😉

@Ashc - I use it also to apply a warm wet compress to sore joints, or after an injury like a sprain. I have a bum knee that swells and hurts at times. I apply a compress and then rub it with Arnica oil. It really helps! Also - another short cut I use when I am too ill and cannot tolerate a shower or bath: I wash only my hair under the tub faucet and do a "bucket bath" in the shower. This way I clean up without having to stand or being submerged in water. And it is quick!

@CallieAndToby22 - I had to stop my meds 3 days before my TTT. Granted - I was not on many meds back then but it still got me sick as a dog without them. I am not sure if I could do that today - I am on a lot of meds that should not be stopped abruptly. Not sure about yours.

@CallieAndToby22 - has your urologist ever considered an indwelling urinary catheter to help with your symptoms?

@p8d - yes, I flare very much if I spend too much time in the sun. I have not yet figured out why. It is not even just heat, since I get it when out in the sun on cool days. I read somewhere that sunlight triggers the ANS by dilating the pupils in reaction to the bright light. I can be out doing something in the garden feeling just fine but from one second to the other I am floored ( literally! ). It always takes me a few days or longer to get better. --- I also have been experiencing more joint pains with the weather change, but I am on Plaquenil now and it's not as bad as before. Hope you get better soon 🧡

I sleep 7-8 hours a night. I did not used to ( hyperadrenergic POTS causes too much adrenaline, so we are pumped up 24/7 ) but since pretty well stabilized on meds sleep is no longer an issue, unless I am recovering from a flare.