Pistol

@kel15 are you sure you are supposed to only take 30 mg once a day? The short-acting 30 mg usually is taken twice daily. --- I hope it works as good for you as it does for me 😉!

@Aghast - I have the same symptoms ( I have HPOTS ) and your theory sounds pretty accurate. I experience both high's and lows in BP, both caused initially by pooling. When there is sympathetic overcompensation following the pooling I will have peripheral vasoconstriction causing cold and blue hands and feet, chest pain ( constriction of the coronary arteries, also called Prinzmetal angina ) and slurred speech, brainfog etc due to inadequate circulation of the brain from constriction. I too respond well to IV fluids. What also has helped are Carvelidol ( Betablocker ) and Diltiazem, a CCB that dilates blood vessels. The vasoconstriction used to be so bad that I took seizures from lack of cerebral circulation but thankfully between the meds and frequent IV fluids ( I have a port ) they barely happen anymore. Definitely vasodilators can help for these issues, you may discuss this with your physician. Also increasing fluid intake is a must! Personally I have to avoid compression hose b/c of the peripheral vasoconstriction.

@kel15 - I take Diltiazem for POTS, and it has helped immensely! I have HPOTS and often run both high BP and HR. Other times I pass out and have low BP. I take the CCB along with a BB ( Carvelidol ). With the Diltiazem I started years ago at the very lowest dose: 30 mg twice a day. Once I realized I tolerated it we increased slowly and I ended up on 240 mg of the XL dose. Now I can decrease to 180 mg during the warmer weather months and only take the 240 mg in the winter. My vessels both dilate AND constrict, so in the cold I seem to have more vasoconstriction and in the summer more dilation. I would not be afraid to try the CCB, but start at a low dose and keep an eye on your BP. For me I feel great when I have a low BP but worse when my BP goes up. So even if my BP is 90/50 I still take my meds, and the syncopal episodes have decreased on the CCB. ( Although from what medicine teaches it should drop more yet on CCB - for me it stabilizes ).

My daughter just informed me that a friend of hers ( highschool junior ) had her second shot and had a reaction that sounds like POTS. She could not get up out of bed without her heart racing, getting dizzy and she felt extremely achy and fatigued. She never had felt like that before, ever! Luckily it only lasted 2 days and she was fine. Still - I was surprised about the POTS-like symptoms!

@Knellie - you can get enough potassium and magnesium from a healthy diet, especially bananas, I eat one every single day. In the way of supplements dysautonomia patients have to be careful - we are usually extremely sensitive to meds, even supplements. What many dys-sufferers seem to lack, however, are Vit D, Vit B12 and Ferritin. I was low in all three at the onset of my illness and supplementing the deficiencies has helped with energy and fatigue. Another supplement I take regularly and tolerate well is Turmeric, I cannot take many NSAIDS but have a lot of issues with inflammation. Turmeric works really well for me for joint pains etc. I cannot take Steroids for arthritic flares, so it works well for that. And for digestion I drink ginger tea as well as chamomile tea for sleep.

Hello @NReed2000 - welcome to this forum! -- I am sorry that your husband has such a bad reaction from the shot. You mention he has had dysautonomia symptoms for years - what symptoms has he had? And which symptoms does he have now, after the vaccine? Unfortunately almost every dysautonomia seems to have to go through this - the docs don;t believe that our symptoms are real. It is easier for them to go with what they learned in school: if a patient complains of symptoms you cannot see or prove with labs etc then he/she must be making it up. Very difficult when we suffer from what is called a invisible illness! --- The best way to get a diagnosis for dysautonomia is to see a knowledgeable cardiologist or neurologist, depending on the symptoms and what type of dysautonomia he feels he has ( POTS, NCS, OH, MSA .... ) If his symptoms get worse when standing up he should ask for a Tilt table test. This is usually performed by a cardiologist. Since he is suffering from Diabetes Type 1 he might be affected by a type of neuropathy that can cause dysautonomia symptoms. In that case he of course should see a neurologist. If he has symptoms of POTS - is he drinking a lot of water and increasing his salt? I am not sure if he should wear compression hose with the diabetes - you may have to ask the doctor about that. I hope you guys find some knowledgeable and compassionate doctors, and I hope that he gets over "the hump" soon! This forum is a good place to ask questions regadring dysautonomia - there are many people here that can share experiences.

My flares usually last only a few weeks. I am lucky since I have a port and get home infusions, so I can get extra IV's whenever I flare, and that cuts them short. Before the IV fluids I lived pretty much in a constant flare. The Prednisone flare lasted a few weeks.

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!!!!!