Pistol

@Sashmonsterr - in order to be diagnosed with POTS your HR must have a sustained increase of 30 BPM or above 120. In your case the HR jumped 29 BPM and then dropped 8 BPM by the end of 10 minutes. That is probably why the MD called it a transient increase in HR. --- Were you anxious or nervous during the test? This can lead to an increase in BP. --- I am not sure but I doubt that NSAIDS would influence the outcome of a TTT. ---- I know that TTT's can be both false negative and false positive, so they are not necessarily the gold standard. Do you normally have symptoms of orthostatic intolerance?

I have been trying to figure out why POTS can worsen with weather changes ( as it does in my case ). According to this article found online https://migraineagain.com/feel-4-ways-barometric-pressure-affects-health/ I found that barometric pressure affects migraines, BP, blood sugar levels and joints. It can cause vasoconstriction - and the drop in blood sugar can cause fatigue. Most importantly the article states that when the barometric pressure drops it causes the blood viscosity to increase. That might be the clue - thicker blood will trigger POTS. This would explain why in some of us our symptoms worsen in certain seasons ( spring and fall in my case ). I usually experience a sudden onset of POTS symptoms like severe fatigue, BP fluctuations leading to syncope, increase in orthostatic intolerance … all improved by IV saline. This explains why in many of us IV fluids are so helpful - they improve the blood viscosity!!! I find this very enlightening and an explanation as to the reasons behind seasonal flares. -- I also have found that allergies cause flares in me due to the effects of histamine release ( vasodilation ), this includes seasonal allergies ( spring, fall ) as well as insect bites and rashes ( summer ). does this ring a bell for anyone?

@judyinthesky - I have hyperadrenergic POTS ( too much adrenaline ) which at times causes me to have insomnia due to the night time adrenaline levels not dropping. When that occurs I fall asleep easily but keep waking up throughout the night and I am restless and easily irritated during the day instead of being tired. Having "a short fuse" unfortunately is a symptoms of the body not getting enough sleep and running on adrenaline. Have you referred to your doctor? Maybe he would order a sleep study ?

@Nin - when I asked my doctor about that years ago he said that our symptoms depend on our autonomic tone and that fluctuates in dysautonomia in an unpredictable pattern. Over the years I have found that to be true.

Dear @Random-Symptom Man - I am so sorry about your health!!! It is so scary to go through this time of uncertainty and open-ended questions! I hope and pray that it can be worked out!!! I hate to ask this but have you considered MSA (Multiple System Atrophy) ? It is a dysautonomia that shares many of your symptoms. Despite the seriousness of your unclear situation - please stay positive and hopeful. I wish you the very best 🤗

@Derek1987 - hmm, I am not sure!!! I think it is simply a matter of taking the right medication.

@Nin - according to what I have read a TTT can be both false negative and false positive. It is not the " Golden Standard " that many hope for. Your tolerance to a TTT can change. I had 2 TTT's, one I passed out during it and the other was considered "normal" by the performing cardiologist - but a autonomic specialist later said it was clearly positive for POTS. I agree with @MTRJ75 - the reason for doing the test upright ( and tied to the table ) is most likely safety. The reason for doing it at all is that orthostasis causes our symptoms b/c the ANS attempts to compensate for being upright and fails to. In most cases this is triggered when standing up. This can happen anywhere within the first few minutes after standing up. It is possible that your symptoms start after so many minutes - and by the time you become aware of them you are already walking. Personally I tolerate walking better than standing but cannot tolerate standing in line, standing at the sink doing dishes etc. Try to compare your HR after standing for few minutes versus walking a few minutes.

Dear @Frau - I am not sure if this is the same you experience after IV fluids but when IV fluids get run too fast ( anything above 250 ml/hr ) I become very cold, teeth chattering, shaking severely and nausea. This happens to my sister as well ( we both get scheduled IV fluids for POTS ). In our case this is due to the fluids being colder than the body, therefore causing these symptoms. When they run slower ( 150 ml/hr ) this reaction does not happen. Some people use fluid warmers for this reason. To determine if this is the cause for you as well ask for the fluids to be infused at a slower rate next time.

@Julyrose - I am so sorry to hear that you are having trouble with your port!!! Hopefully it will heal soon. - Yes, my doctor took over 2 years before he finally agreed to the port for me. He was worried that infection or blood clots would be a real threat. However - finally he decided that the benefits outweigh the risks and agreed to the port. And I am so thankful b/c I am sooo much better since receiving IV fluids regularly ( and most importantly I have not had to be admitted to hospital or go to ER for the past year and a half!!! Prior to the port I was admitted every 6-8 weeks!!! Many physicians oppose ports - or even scheduled infusions - for POTS, but in refractory cases it can be a life changer!!! --- Best wishes for a rapid recovery!!!

I would like to add that I personally benefit from increasing the exercises by frequency rather than length. I am not able to increase the time I spend on the rowing machine in one session but rather the frequency of the sessions. Instead of increasing from 2 minutes daily to 3 minutes twice daily I increase to 2 minutes three times a day and so on. This seems to avoid exhaustion that carries on throughout the day.

@Alice Jean - I just have a bottom-of-the-line mattress but I do think that a proper mattress can make all the difference. If you can afford it at all it might be very beneficial to invest in a reasonable priced mattress. I am not sure if an adjustable base would be necessary other than for comfort, but it is recommended to raise the head of the bed for POTS. I found this on Dysautonomia International: Elevate Head During Sleep It is recommended to slightly elevate the patient's head during sleep. This is done in order to help (re)condition the patient's body to orthostatic stress,6 and this can also help patients that may be experiencing gastric motility problems that result in acid reflux or G.E.R.D. The best way to do this is to raise the head of the bed with a few bricks or large books. A wedge pillow is not very helpful for this. Elevating the whole body and having the feet be lower than the hip area is needed to get the intended benefit. A wedge pillow only elevates the shoulders and head, but does nothing to change the position of the hips or the lower legs. According to most of the literature all that is recommended is elevation of the head, so I am not sure that an adjustable bed would be necessary. But I always follow my older, starving artist brother's advice: Save where you can but never on mattresses or shoes!!!!!!!

@Luke - a recumbent bike is not considered medical equipment and I doubt you will get it covered by insurance. See if you can get a used one?

@Scout - yes, we have to be aware and prepare by taking the recommended steps like handwashing, avoiding crowded places IF POSSIBLE etc. However - since that is all we can do there is no point in fretting. The anxiety over what CAN happen can be worse that what DOES happen. I too get very ill whenever I get sick and am also afraid of getting sick - but I do not let this take over my life. Next month I will be flying overseas and I did consider the fact that being in a crowded airport could be a risky business. But I will not let that change my plans or cause me to worry. --- This pandemic is affecting many countries and unfortunately it affects countries that do not have the medical resources we have. I truly believe that it will pass, just like the other flus we had to deal with in the past. Remember SARS and H1N1? It was overcome, and so will this. Until then just be careful.

@Always_anastasia - you do not have to faint with POTS, as far as I remember only 30% of POTS patients faint. I personally do faint but I have both POTS and NCS ( neuro-cardiogenic syncope, also a dysautonomia ). In my case the fainting is caused by a sudden drop in HR following the tachycardia. I am happy you got a diagnosis, I know how important that is to know that there actually IS something wrong with you! But getting diagnosed is only half the struggle - now you need treatment and that can be a frustratingly long journey. It takes a lot of hit-and-miss b/c there are so many causes for POTS and they all respond differently to medications. Often the first med is a betablocker, for both POTS and NCS. However - it is important to follow the recommended increases in water/ salt intake and wear compression stockings. There is a good book that explains what happens in syncope, and it is written in plain English b/c it was written for patients. It is " THE FAINTING PHENOMENON" by Dr Blair Grubb, MD. Another good resource for patients is the book " THE DYSAUTONOMIA PROJECT ", which was written for both patients and physicians and is a magnificent source of information. You can get it at the website with the same name and both of them at amazon. I wish you the best of luck and a rapid improvement of your symptoms. Please keep us updated on your progress!!!!

@SCOOBY - I have hyperadrenergic POTS, currently somewhat controlled by meds and IV fluids every week. I used to be very exercise intolerant and also suffered from adrenergic surges and high BP after any activity. However - when I was at my worst and essentially bedridden I still exercised. I did leg-strengthening exercises while reclined, this was essential for me to be able to get out of bed at all. Once I improved to where I could be more active I started to add mild weighted exercises and orthostatic training ( leaning with your back against a wall for a few seconds and increasing the time to tolerance ). Today I use a rowing machine with good results, I can exercise my whole body while sitting. I found that exercise is very important but you have to only do exercises that GIVE you energy, not USE energy. When you do too much or the wrong exercise it will make you sicker. For me it was important to exercise lying down initially and then upgrade to sitting and standing exercises, but only when tolerated. Some days I can not exercise at all and others I can. Listen to your body - and if the exercises you currently are doing make you symptomatic do milder ones that don.t trigger you symptoms.

Hurray!!!! I hope this will bring you relief. Please let us know how you are after the first week!!!!!

@Nin - I believe the reason you are not to take anything by mouth before the procedure is b/c if you pass out you could vomit and that could cause you to aspirate. If your stomach is empty this very possible scenario could be avoided. HR normally drops at night, but it may also be b/c you are reclined and resting.

@DizzyGirls - that is such wonderful news!!! I am so glad that FINALLY something went right for you guys!!!! Best wishes!!!!

@CallieAndToby22 - I am glad, I have no doubt it will help. Let us know if you feel better - and hang in there! 😉

I am sorry you are going through that. In most cases of low BP and tachycardia ER's administer IV fluids, since both symptoms together can indicate dehydration, and the fluids are given to increase BP and therefore decrease HR. This alone should - in my experience - qualify you for IV fluids. This is the only treatment that is effective in my case, to treat an exacerbation of POTS - whether it is high BP or low BP. Many doctors do not like to give IV fluids for POTS, however with your symptoms it is an appropriate treatment, even if you did not have POTS. So I do not see why you should be refused to receive them, if you would ask for them.

Yes, many people with dysautonomia only get it at certain times, or after certain triggers. -- I also think it might be possible that you are suffering from some other condition that triggered ANS imbalance. Have they considered autoimmune disease? Many people on this forum developed POTS due to autoimmune issues, that is not that uncommon. And autoimmune disease can be very difficult to detect, and sometimes has unusual symptoms that can easily be missed. Has any of your doctors ever checked for that in a blood test ( ANA, ESR, RF, Lupus, Lyme titer etc )?

Dear @SteveC - I am so sorry you are going through this. It does seem to me that some of your symptoms could stem from dysautonomia, especially the fast HR, inability to be upright for long, the fact that it improves with lying down and the exaggerated response to overstimulation. But some of your symptoms, like muscle twitching and swallowing difficulties, could also be from other causes. When you get your monitor you will be instructed to describe your symptoms and activity when you push the button. that is very important for this reason: if you simply push the button for dizziness or fast HR the doctor will think you may be very physically active - which would be causing the symptoms. However - if you feel dizzy, have a fast HR and palpitations and you simply stood up from sitting - that would be an abnormal scenario. So it is very important that you describe exactly what is going on whenever you push the button. Has your cardiologist ever taken your HR and BP lying, sitting and standing? If not - you can do this at home if you have - or purchase - a BP measuring device. Simply lie down for a good while and take your BP. Then sit up and take your BP and HR after one minute of sitting. Then proceed to stand up and take your Bp after one, 3 and 5 minutes. In POTS your HR would increase 30 BPM or more and stay there after getting up, usually without a significant change in BP ( except for the hyperadrenergic type, in which case your BP would also go up significantly ). Important in addition to the numbers would also be your symptoms your are experiencing during this test. If your numbers and symptoms are significant this may be caused by dysautonomia. You can read more here This sounds like dry mouth, which can be caused by many different things. Dysautonomia CAN cause this if the ANS causes the body to not produce saliva. This should definitely be brought up to your doctors. It can also be a cause of certain medications. Since you suspect dysautonomia the best steps to take are usually drinking lot of fluids, increasing your salt intake ( if approved by your doctor ), wearing compression stockings ( you can get these at any medical supply store where they can measure your legs to get the right fit, very important ) and changing positions slowly. Mild exercise is recommended and avoidance of triggers ( this is the hardest part b/c it often has the biggest impact on our lifestyle). I personally would be diligent in recording everything you experience while wearing the holter monitor, take your orthostatic Vital signs on several days and research as much as possible about dysautonomia so you can go to your Follow up appointment with the cardiologist prepared. Also write down any questions as they come up so you do not forget anything at your appointment. I think you are being very proactive by considering the possibility of dysautonomia and I hope your doctors will be able to rule it out!!!! Best wishes - please let us know how things go! 😉 Be well!

In my case it was the opposite - I had to learn to accept my illness and limitations in order to function. As I went through the stages of grieving over losing my independence from POTS I got very depressed and I realized that I got stuck in the denial phase. Once I learned to accept my "new Me" things got a lot better. Acceptance does not mean defeat - it means being able to live with the reality of loss and building a new existence including the limitations. This also is different for me and many others with POTS. If I push myself beyond my limits I become worse. In my case I have to follow a strict balance of rest and activity - if I overdo it I become too symptomatic to function. However - I do push myself to be active WITHIN MY LIMITATIONS, meaning I exercise and am socially active as much as my illness allows me to safely.

@Robert J - these are typical triggers for POTS and controlling them is a challenge. Meds help some but I have to completely avoid them in order to function.

Dear @Scout - this a quote from an article about AD from Wikipedia: AD occurs most often in individuals with spinal cord injuries with lesions at or above the T6 spinal cord level, although it has been reported in patients with lesions as low as T10.[ I used to think that my symptoms - similar to yours - are caused by this but my autonomic specialist calls it hyperadrenergic POTS. AD has similar symptoms but is related to spinal cord injury. The hyperadrenergic state in POTS is caused by autonomic dysfunction. This sounds like hyperadrenergic POTS to me, which runs in my family. Beta blockers CAN be effective but are not for all people. My sisters and I all take Carvelidol, which has proven to be the only BB effective for us. However - it alone is not enough for us, we also take Diltiazem ( a calcium channel blocker ) and guanfacine as well as many other meds needed to control our fluctuating BP's. Your specialist may have to experiment with other meds; it took trials of many medications ( pyridostigmine, Midodrine, several beta blockers, clonidine, Norvasc etc ) before we found the right combo. Here is a list of meds commonly used in the treatment of hyperadrenergic POTS ( assuming that is what you have ), from an article on our website: Some of the medications that have been found helpful are: Adderall, Ritalin. Florinef. Clonidine. Beta-blockers (especially the combination of Carvelidol and Labetaiol) Midodrine. SSRI/SNRI. Modafinil. Methyldopa Maybe your specialist would be open to discuss these meds with you. ---- As in advocating for yourself: I used to bring literature about hyperadrenergic POTS with me to my appointments in addition to a list of questions. If the physician would not address my concerns or act ignorant or refuse to change meds I simply fires him/her - I had to do that to 5 cardiologists before finding the one that knew what was going on. And that one is an 8 hour drive away!