Pistol

Hello @Coffeebean! I had 2 TTT's. They are not fun, especially if they have instructed you to stop all meds beforehand. They will strap you to a table, hook you up to BP monitor and EKG and then they will stand the whole table up, with you on it, for 30 minutes or until you pass out ( if that happens, you do not have to pass out in order to get a POTS diagnosis. If you have POTS your heart may start pounding, you might get cold and clammy, short of breath, have chest pain etc. But do not panic, no matter what happens - they have it under control, and these symptoms - as uncomfortable as they are - are normal in dysautonomia when standing up like that. They will also start an IV to help you feel better afterwards. Throughout the test they will ask you how you feel, and it is important to mention any and all symptoms you might experience. In POTS your HR will go up at least 30 BPM within the first 10 minutes of being upright, and STAY THERE, along with the symptoms mentioned, and other symptoms as well are possible. If your O2 level drops they will give you oxygen, so don;t worry about that. Good Luck - let us know how you did!!!!!!!

@Sarah Tee - I am sorry you lost your GP, I know how devastating that can be b/c we are so dependent on our docs! --- With all of the problems you had with that practice, and now that your doc is no longer there, I personally would just switch practice all together. Having a bad relationship with staff at a practice can interfere with the way you communicate with them, and that can be bad for you. I fired several docs because they were either rude and ignorant or did not know about POTS ( or they thought they knew EVERYTHING about it ! ) You have to see a new doc anyway - so why put up with that office? Often we have to kiss several frogs before we find our prince. Good idea to ask around what exeriences others have with their GP. In general - if a physician is described as kind, compassionate and knowledgeable they make a good fit for POTS patients, whether they know about POTS or not. A understanding GP will listen, and take you serious - that means he/she will be willing to learn in order to help you with your symptoms. Best of Luck - don't settle!

I agree with @misseb. I do not tolerate big meals, so I too graze all day. My go-to are protein bars, nuts, bananas, joghurts and sandwiches. When i cook meals for my family I just have the protein and vegetable and avoid the carbs. This has greatly improved my GI symptoms and prevented postprandial fatigue.

@Abe - I am so sorry! Yes, the unreliability of our abilities is the worst part of POTS - but unfortunately a real symptoms that is difficult to treat. I always tell people that it is like balancing on a silk thread: one unexpected breeze or startle and down you go ... My sister has POTS and suffers from eye problems. she was put on Mestinon by her autonomic specialist and the problem got much better. Mestinon is a commonly used treatment for HPOTS. Maybe something to look into?

Thank you @Angelika_23 - I am so glad you got through it! You are lucky that you did not end up with a flare. Keep it up!

I put the bit of energy I have in the spring into gardening. I create themed flowerbeds around my property and add to them every spring. A lot of the plants I start from seed, so I get busy in March and go until May. That works out great b/c once it gets too hot in the summer I pretty much have to stay inside except for early morning and after sun set. When the flowers are done I have another project - I will refinish an antique desk in my bedroom. I can do all the sanding and coating on my shady porch in the mornings. I used to love working with wood but d/t POTS I haven't been able to do much of it.

@CallieAndToby22 - I would have the nurse for the neurologist that will be doing the BP measuring check with Vandi if they indeed want you to hold the meds.

@Abe - blurred vision and other eye problems are common in dysautonomia. The ANS controls pupil dilation. I too feel my eyes get strained, and even burny, and blurred when I am on the computer or TV for too long. That is despite a good report from the eye doctor ( I wear glasses ). The head-muscle and neck pain in my case is also from POTS. I have HPOTS and the high adrenaline levels and low oxygen cause constant tension in my head and neck. Even to the point that I clamp my jaw so hard all of the time that I have ground and cracked my teeth over time. I have chronic tightness in my neck muscles, PT helps a bit and trigger-point massage. But mostly I have to take half of a muscle relaxer when it gets too bad.

Hello @teemarc3- welcome to the forum! POTS commonly can get triggered by a viral infection. They used to call it post-viral malaise. If you HR goes up when standing you might have POTS. What BP med did they put you on? Many BP meds can cause fatigue and tiredness in the first few weeks, especially clonidine. I slept the whole day, every day on it and needed to stop it. But with most BP meds ir goes away when you body got used to it.

@dizzytizzy @KiminOrlando I have had joint pain since onset of POTS 12 years ago. Blood testing always only showed an elevated ESR. My joints get red, swollen, hot and very painful, that is ALL joints. I saw a rheumatologist twice, he ordered tons of outlandish sounding labs and even xrays, but everything always checked out normal and he recommended steroids, which i cannot take due to HPOTS When I told him I cannot take that and asked for Plaquenil instead he said that is only for people with RA. Eventually my autonomic specialist put me on Plaquenil, saying it might help my POTS as well. I ahve been on it for 3 months and it seems to have cut back on my joint pains, although I am having some sort of flare right now. I do not know why the rheumatologist community is so bent on lab results. Obviously if a patient has visibly inflamed joints there is something going on. But apparently they are not yet familiar with auto-inflammation. Which surprises me b/c it really is not a new concept.

@MTRJ75 - sounds like you are in good hands! I think you can stop worrying for a bit, she's on top of it and would have told you if you were in immediate danger of sudden cardiac death.

@Knellie the GI issues you describe sound typical for dysautonomia. The ANS affects the GI tract greatly, so typically we suffer from these issues. What has helped me with the nausea is Odansetron ( the orally dissintegrating kind ) - it helps instantly. For the reflux I have been on Protonix for years and when I was at my worst ( I had serious changes in the lining of my esophagus ) I took a combo of Mylanta, viscous lidocaine and Phenobarbitol ( called GI cocktail ). All those meds have healed my GI tract and diet did the rest. Most helpful is avoiding large meals and as soon as I switched to eating 6 - 8 snacks a day instead of meals everything improved. Avoiding raw fruis and veggies as well as carbs helped greatly for the cramps and bloating. @Alicat_326 - to bring it back to the original post: I had heavy periods for a while and my POTS definitely worsened during that time. I ended up having the lining of the uterus scraped which helped with the issue. As soon as I stopped having periods the monthly flares stopped. ( But this is not recommended if you still want to have children. )

@Sarah Tee - yes, that is different from a PCP. I always understood that GP and PCP were the same thing. So from the description you posted it does sound like it is essentially a doc who will see patients with chronic conditions that are too involved for the PCP? So it sounds like he might be a better fit than a Family doc. Let us know how it goes!!!

Hi @MTRJ75 - no worries. CAN ( or cardiac autonomic neuropathy ) is not the same as neuropathic POTS. It is mostly in patients with diabetic neuropathy or due to old age. And the tachycardia that usually occurs with dysautonomia is not life threatening. SVT is altogether another can of worms - it is a tachycardia but a different type of tachycardia. It CAN be dangerous and usually - if severe - they consider an ablation. In POTS we mostly experience, sinus tachycardia and PVC's and PAC's - all harmless. They feel terrible but do not cause sudden death or heart attacks. I am sure your cardiologist told you the same. If none of your monitors ever showed anything other than the above you have nothing to worry about. If you have other arrhythmias ( not related to dysautonomia ) needs to be evaluated by the cardiologist, most likely with another holter monitor.

@POTSie78 - I do get the same type of chest pain you describe and was diagnosed with Prinzmetal angina ( spasms of the blood vessels around the heart ). But when I had pain in my back, neck and radiating under my arm ( armpit ) it was not due to that but rather from a pinched nerve in my neck. There is a big nerve that goes from the neck across your chest under the armpit. I fixed this with Physical Therapy. Could this be the case for your shoulder/armpit pain as well? Applying heat and taking Motrin helped me with that as well.

@CallieAndToby22 - that is strange that the lab sent you home. If they do not know how to do it I would look into a bigger lab/facility or complain to the lab that would not do the lab. I had mine done in the facility where my specialist practices. I believe if you cannot tolerate walking they might just do whatever the most os you tolerate - even if that is sitting up. I had to lie reclined in a recliner in a quiet corner of the lab and after they took my blood after 30 minutes I walked around 30 minutes ( I still could do that back then ) and returned to the lab to have my blood drawn again. I would either try a bigger hospital/lab or - as I already said - ask for the manager of the lab you already tried. If Beverly ordered the lab it is important you have it done correctly, since her treatment options would depend on the outcome of that test.

@Jyoti @Abe @Clueingforlooks - whenever the seasons change our symptoms seem to get worse, happens to me every year in the spring and fall. I believe that is due to changes in barometric pressure, which affects the ANS. Unfortunately there is nothing to be done about it other than ride it out and keep positive, b/c eventually you will learn that each flare is followed by going back to "normal". Hang in there and don't despair!!!! 😘

@Sarah Tee - here in the US everyone has - or should have - a PCP. They are the ones keeping track of all communication between different specialists and have the overview over ALL health updates in ALL diagnoses of each patient and they have all the records. Any specialist we are referred to communicates with the PCP ( or GP ) after each visit. The PCP also handles all referrals and insurance matters. Without My PCP I would be completely lost! ( But I have an exceptionally good one ). So I think it would be a good idea if this doc will take you on as patient!!! Good Luck!!!

@Julyrose - yes, I get chest pain/pressure when my HR goes high. Most of the time my HR goes up I also have high BP, like HR 160-ish and BP 158/110. Then I feel like my heart is going to explode any minute. Usually though I either pass out or have an autonomic seizure before it goes any higher, that seems to be like a reset. When I regain consciousness both HR and BP are usually back down.

@MTRJ75 - anytime you feel new fast or irregular heart beats it is best to see a cardiologist. Especially if you have symptoms like dizziness, lightheadedness or chest pain with the palpitations/irregular beats. At the minimum your doc might want to do an EKG but often they will order a holter monitor in the hopes of catching those irregularities. I - for example - get episodes when my heart beats vey strong and oddly regular, like a robot. Turns out I have atrial flutter when that happens. But you won't know if it is something harmless or serious unless you get it checked. So - I would see the doc on this one.

@Zach Martin - welcome to this forum! To answer your question: yes, I am familiar with the head pressure. I have hyperPOTS, which is caused by excessive sympathetic response causing increased adrenaline levels, which causes blood vessels to constrict and the blood cannot reach the heart, lungs and brain due to this. It causes increased HR and increased BP ( sometimes dangerously high ). Whenever I am in a flare I can experience head pressure and severe cognitive problems - I cannot think, cannot form the right words and slurr my speech. If it is bad enough to also affect the circulation to the heart and lungs I also have severe chest pain and shortness of breath. What helps me medication wise the most is a calcium channel blocker called Diltiazem. It dilates the blood vessels. But even the increased water and salt, beta blockers, SSRI, Ritalin, etc did not help as well as weekly IV fluids. They seem to stop and prevent the vasoconstriction. If your problems are caused by excessive vasoconstriction the Florinef and Propanolol as well as Stimulants may be the wrong meds for you, since they all can CAUSE vasoconstriction. Do you get cold hands and feet a lot? Especially when you are bad? That would be a sign of vasoconstriction. In my case they confirmed the diagnosis of HPOTS with a neurotransmitter test that found my norepinephrine ( adrenaline ) levels to be very high. If any of this sounds like you you may want to look into HPOTS. There are some articles about it on our information resources site, under POTS. Another way to bring down adrenaline levels is to lie down in a completely quiet and dark room and close your eyes and concentrate on your breathing. But this - in my case - is often only effective until I stand up again. This - to me - happens when my BP is elevated. The constricted vessels cause the heart to beat STRONGER in order to push through the narrowed vessels. Feel free to PM me if you find any similarities and have questions. Best of Luck!!!!!!

Yes, I think it's a neurologist. They do a skin biopsy.

@dizzytizzy - I have been on the Plaquenil for about 3 months and I am seeing less joint pains, I know that because I simply just realized while reading your post that I have not been hurting. Even the stiff fingers every morning are less severe! And I have absolutely ZERO side effects from it! But that's just me, I know of Others who are not that lucky. I hope it helps you!

Hello @Knellie - I have broken several toes on different occasions and they always healed ( albeit crooked ) within 4-6 weeks. For minor wounds not to heal in 6 months is odd - could you have SFN? This could potentially cause delayed healing. Delayed healing can have different causes, so if you are worried I would bring it up with your doc.

@MTRJ75 when I first became ill I pushed through all of the ( very obvious ) symptoms and ended up fainting all of the time at work and then , when that did not stop me, started taking seizures. All of these caused by HPOTS. At the time I fought like heck to remain able to work and tried power through these episodes, my HR and BP through the roof most of the time. Doing this definitely worsened POTS for me. But don;t worry - your heart will not top beating!--- I can really relate to how you feel, I have been there many times. And having to fight with insurance and SSDI at the same time that you are trying to just sum up enough energy to stand up and go to the bathroom just feels like you get pushed over the edge. The exact same thing happened to me. But know this: eventually things do get better. I am happy to hear that your doc is willing to try new meds with you. POTS meds often do not get approved b/c there are no FDA approved drugs for POTS. If needed talk to a case manager at your insurance - they often can help with these issues. And in the end it is up to your doctor's ability to document that decides whether or not a drug gets approved. And regarding SSDI: most of us have to fight all the way to the hearing with the ALJ. But once you get to talk to human and let them hear and see what it's like for you most of us get a[roved for SSDI. The problem is that POTS is so misunderstood and little known. Hang in there, and don't push yourself!!! We don;t die from POTS but we can make things worse.