Pistol

@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!

Yes. I have. I was diagnosed with hyperadrenergic POTS and NCS and I have both sympathetic overcompensation and sympathetic withdrawal. The first means that something ( a sudden drop in BP for example ) triggers the sympathetic NS to jump in to compensate and it does so in excess ( dumping too much adrenaline ). causing fight-or-flight response with all the fixings and - in my case - even leading to seizures ( too much vasoconstriction causing cerebral hypo-perfusion ). The latter means that when normally the sympathetic NS SHOULD activate ( like in orthostasis, when adrenaline should be excreted to cause vasoconstriction to counter the blood pooling and drop in BP ) it fails to do so, causing a sudden drop in BP leading to syncope. ---- I have not tried Valium but I know that some people do take it for their POTS symptoms. I have a prescription for Ativan ( also a benzo ) to take when in a stimulating environment to PREVENT the dumping of adrenaline, but I take it very sparingly and try to limit stimulation by avoidance of triggers. Once I am in a spell it is ineffective. Also - my autonomic specialist does not support the use of benzos for POTS b/c it is not a treatment but rather a "crutch" to mask the anxiety that comes with adrenergic surges and leads to dependence ( which he said is common in dysautonomia ). To me - in addition to medications commonly used in the treatment of POTS - the single most effective treatment for problems concerning the sympathetic NS are IV fluids. I believe this is b/c having the extra volume creates a normal pressure in the blood vessels, which in turn prevents the triggering of the ANS to dump adrenaline to cause vasoconstriction. Since getting weekly and more infusions my symptoms have greatly improved, hence proving the effectiveness of the infusions.

@Scout this might be what happens to me before passing out or having a seizure, people tell me that I just stop doing anything and have a blank stare for a few seconds and then go unconscious. I am aware of the staring too, and I feel simply "empty". "Void of all senses" might be a good way to call it, for those few seconds I am not really conscious yet not unconscious either. Sometimes my lips turn white or blue when this happens. I believe this is pre-syncope: our brains are not receiving enough oxygen. the link below explains it - and also that nausea afterwards is typical. @Always_anastasia - how often do you have these episodes? Have they ever been witnessed by anyone? Usually someone describing what you do during them is helpful to doctors. When I was at my worst I would have them anywhere - in doctors offices, on the street, in stores, in restaurants … so mine are usually witnessed and my doctors actually witnessed them themselves. Have they ever done an EEG? Have they done orthostatic Vital signs ( taking HR and pulse lying, sitting and standing ) - you can actually do this yourself if you have a BP machine. PM me if you need to know how. If this test is abnormal you can show your doc that you are legitimately a candidate for dysautonomia. I know exactly what you are talking about - good way to describe it!! If your neurologist does not take you serious than I personally would look for someone else. I am so sorry that you are alone in this - it is a very scary thing to go through. To both of you - the following article describes some of this: https://www.epilepsydiagnosis.org/seizure/autonomic-overview.html

I know someone on this forum who cannot drink enough fluids due to stomach issues and she gets infusions via port every day. She also has a NG tube in place. I myself can drink orally but its never enough. 1 l IV fluid run over 6 hours does the trick, same for my sisters. If it is run faster its not effective. I usually do well with fluids once a week unless I am in a flare, then we do them every other day. I would imagine that for you starting with fluids every other day might be good , you can always increase as needed. Getting too much IV fluids has its own set of problems, however since you cannot supplement orally it may be necessary. Trust your doc.

Dear @Julyrose - I am so happy for you! Thank god it went well for you! --- How often did you need Fluids before the port? I started on an as needed basis but ended up in hospital every 6-8 weeks because if I waited until I needed the fluids it was already too late. Then we did them weekly for a few weeks and stopped but I got bad as soon as we stopped them. Since the port my doc's orders are 1l LR weekly and up to 3l weekly as needed. This way I do good with the weekly ones but if I am sick or in a flare I do them every other day and this helps me to recouperate quickly, plus I no longer pass out or take seizures ( well, rarely at least ). --- since you have such bad gastroparesis I would think that you might need them several times a week -? The good thing is that with the port accessed you can hook up to them yourself. You just need to have a nurse access and deaccess the port and flush it with heparin. Other than those things I do everything myself at home. I hope you will improve as much as I did!!!! Best wishes!!!!!

@Nin - yes, I have autonomic seizures. I have NCS and hyperadrenergic POTS and when my adrenaline soars I suffer from sudden, severe vasoconstriction. this stops the blood flow to my brain so abruptly that I take seizures that appear exactly like epileptic seizures. I had a longterm EEG in an epilepsy monitoring unit and when I had an episode thay found that it is due to the stopping of cerebral circulation that I seize. My HR at the time was high. I also experience sudden drops in HR that cause syncope from NCS. I used to have episodes several times a week but with medication, frequent IV fluids ( I have a port and get them at home ) and limiting my activity ( although exercising lightly every day ) I hardly ever get them anymore. If I am sick or stressed or do too much I have them but not often. These seizures have different names: convulsive syncope, autonomic seizures, hypoxic seizures, reflex anoxic syncope …. they are all caused by dysautonomia. I don't know why there is no information about this out there - I know of several people who have the same seizures. But I guess it is a bit rare, so not much gets written about this. My autonomic specialist hs several patients with the exact same seizures, so it can't be THAT rare! How are you coping, what meds do you take and what other measures do you take to stop them? I am sorry you are going through this, it is scary and frustrating!!! Wishing you well!