Pistol

@Outaker - if you seriously want to apply for SSDI contact your local SSI office, they will help you with the application. It is a long and involved process. They send you a detailed questionnaire about what you can and cannot do etc and they get all of your records from all doctors for their review. Most likely you will be denied several times.. The last step is a hearing with an administrative law judge who will decide whether or not you get it. It takes most people about 2 years. Good luck!!!!

@JP0324 - from my own experience it sounds like you ae not well controlled with medication. Your HR should not still run that high. Is your cardio aware of you still having these symptoms? In my case I had to try many meds before we found the right ones - sometimes there was tweaking, sometimes a change in meds. Do you FEEL any better?

I tried Metoprolol as well as Propanolol as well as Bystolic. Coreg has been most helpful to me since my BP runs high.

I also have POTS ( hyperadrenergic ) and NCS. My first TTT I passed out and got NCS, my second I got POTS. Autonomic specialist did catecholamines and detected hyper-POTS. BB has been good for me - helps both NCS and POTS. Depending on the REASON for your symptoms ( vasodilation or vasoconstriction ) caused by whatever TRIGGERS there are many meds that can help. It sounds like you have a knowledgeable doc - call his office for any question and hopefully you have a follow-up scheduled to ask questions????

Vit D supplementation could improve your symptoms - it did for me. But you have to initially go on prescription strength loading dose to bring the levels up - daily OTC doses are not enough. - Regarding testing - what did the TTT show?

@Outaker - do not give up quite yet!!! Lots more opportunities for improvement coming!!!!

Dear @RJS - have you been tested for MCAS? This could cause severe allergic reactions as well as POTS. An allergist or most ENT's can test for this with labs and urine tests. It is usually treated with H1 and H2 blockers. --- My mother ( in her eighties ) had severe POTS symptoms in her middle age and was tested for allergies and was allergic to almost all foods. She had to go on an elimination diet and then slowly reintroduce different foods. She is better now ( also gets treated for her POTS ). Have they tested your food allergies with a blood test? -- Do you tolerate bone or chicken broth? This could add some valuable nutrition. --- What have your docs said to do? Have you seen a nutritionist? Most hospitals have one and they can give you tips on what to eat so you can get the nutrition you need. Best of luck!!!!

@Outaker - I am so sorry you are having such a bad time. All of these symptoms are familiar to me - I have hyperadrenergic POTS. The BP fluctuations with the consitant diastolic elevation make me suspicious since this is very common in hyper-POTS. It sounds like you need a medication change. For me the cardiologist usually would switch the BB or add another med like calcium channel blocker. Also SSRI helps with hyperPOTS due to regulating the neurotransmitters. I get seizures and syncope from POTS too and before episodes I usually get cold, chills and yawning. I was told the yawning - which you also describe - is a sign of cerebral hypo-perfusion ( not enough blood flow to the brain ). The CP and shortness-of-breath are often caused by circulation changes in the chest as well as the hypertension. --- If I were you I would see the prescribing physician and go with his/her recommendations. Keep us posted!!!!

Dear @MeganMN - I second what @jklass44 has said, try it. I tried many meds over the years and was scared to start them every time. We are in general very sensitive to meds as they effect the barely-there balance of our ANS. However - if we do not try we cannot find what works. I also have found that starting on the lowest dose is the way to go. Be brave - best of luck!!!

Hello @Bicksa - I also get IV fluids for my POTS symptoms. I used to get them as needed for flares and my PCP gave me a standing order for them . I had to go to an infusion center ( in our rural area this was the outpatient surgery center ) or to the ER. They helped but we found that if I get them too fast they were useless, I needed them over 8-24 hours to have lasting relief. But I ended up going so often that I now have a port and get weekly infusions at home with a nurse. The current consensus is to do short term infusions for the immediate relief of POTS or for prevention but discourage long term infusions like in my case. However - my case is so severe that the risks outweigh the benefits ( and I have been very stable on the weekly infusions ). There is an excellent article about this on the main page. first one on the right under study results, about pharmaco therapy for POTS. It has a section on this subject. You can take it to your doctor - it will justify the fluids. And - unfortunately most doctors still believe that we do not need fluids if we can drink. That is nonsense!! Most of us drink like fish but when we are bad that does not help. In my case I have been admitted to the hospital many times in bad shape and left hopping and skipping after IV fluids. I wish you luck and agree with @MomtoGiuliana that IV fluids could be helpful.

@ScottS - do you take any medications that could have the vision problems as a side effect?

I used to get black floaters whenever I laid down but I do not get them any longer since I had glasses prescribed.

Here is an old german trick my mother used for us when we were kids and had stomach upset and diarrhea: put salt in ginger ale. It takes the fizz out but doesn't tast too bad. And between the ginger, salt and sugar it is a great substitute for expensive drinks!!!!!

@Derek1987 - NCS is neurocardiogenic syncope ( also called vasovagal syncope ) and OH is orthostatic hypotension. Both are dysautonomias and can share symptoms with POTS and they all can be diagnosed with a TTT. Oh Derek - this is EXACTLY what happens to me in a store!!! When I am there I race through the aisles throwing anything I need in the cart just b/c I know I only have so much time before I need to leave the store and lie down in the car!!! It drives my husband crazy ( he is the slow and easy-going type and likes to take his time comparing prices etc ). And I have fainted many times in doctor's offices ( and stores and hospitals and church .. and so on ). Only 30 % of POTS patients actually faint - but many ( myself included ) also have NCS which contributes to the frequency and severity of episodes. Fortunately POTS and NCS share the same treatment. I am not sure if you had mentioned this in another post but - have you seen an autonomic specialist? Not just cardiologist or neurologist but rather and actual autonomic specialist? THEY will be able to differentiate your type of dysautonomia whereas many MD's that treat POTS are not actually knowledgeable in all of the intricacies of these conditions.

@Scout - I had many trips to the ER for chest pain radiating up my neck, nausea, palpitations and nausea. Sounds like a heart attack, doesn't it? Well - every time everything checked out OK but nobody had an explanation. Well - finally my cardiologist did a heart cath and found a certain type of angina caused by spasms of the coronary arteries ( Prinz-metaL angina ). Since then I have been on medication for that and am much better. BUT - without the heart cath we would not have known. Only a stress test followed by a heart cath ( if deemed necessary by your cardiologist ) will truly show if your chest pain is anything to worry about. What does your cardiologist say?

@Tiredtoday - I am sorry that you have to be on this forum, but at the same time I want you to know that we completely understand b/c most of us have been in your shoes! -- First of all - if you have POTS your TTT will probably show something to prove that. You may get POTS or NCS (VVS) or OH - but they are all dysautonomias. From what you are describing your symptoms can very well be POTS. Do not worry until you have reason to - often our fears are worse than the disease!!!! And - just to address your worry - IF they claim your symptoms are psychological in nature then you just go to a psychologist, get evaluated and prove to them that your symptoms are not " in your head ". Many of us - myself included - had to go that route just to shut up the sceptics.

Hard to tell due to the difference in light. You have to make sure that the picture is taken with the same light source.

Hi @MeganMN - yes, a halter monitor would be good but you do not need to stop the BB ( unless your EP wants you to ). Depending on your symptoms he/she may want catecholamines but that is only of you have symptoms of hyper-POTS. The usual tests ordered are TTT, basic labs, EKG, Echo, sometimes stress-echo, rule out pheochromocytoma ( labs and urine ). If you experience a lot of palpitations many cardiologists or PCP's will order a halter monitor to check for arrhythmias. My specialist also checked renin/aldosterone levels at my first appointment. Good for you that you are trying to prepare yourself - best thing you can do because until you find that one-in-a-million doc you have to advocate for yourself. But this forum is always here if you need us!!!!

This right there is what you need to avoid. When you feel bad you have to STOP, DROP and REST!!!! If you push through you will cause your POTS to get much worse. If you wake up feeling weak then your body is telling you to take it easy. We CAN get some control over our symptoms but we need to RESPOND to the signals our bodies give us. And - as you already realized - smoking causes vasoconstriction and therefore can affect your POTS ( and as you know it is very bad for your health in general ). Your BP is too high and the fact that is drops to low is common in certain types of POTS ( in my case it happens to me and I have hyperadrenergic POTS ). I know you have mentioned in previous posts that you do not take any meds currently but I think that BP like yours should be treated. The symptoms you describe are indicative of hypertension which can be dangerous if it goes untreated - that is why they call it the " silent killer "

Well - yes, I know that feeling. We all probably do this or have done this to ourselves. But I am impressed that you are able to do this sort of work!!!! I have learned to avoid anything like this b/c I will end up in bed for days and then spend a week reconditioning. So - if possible leave the hard work to someone else!!!!! And if you end up doing something that takes your mind off POTS - set a timer for every hour to remind you to drink and snack. In my case I need as much rest as I can be active, for every 15 minutes of being active I need a 15 minute rest which I use to hydrate.

Dear @Derek1987 - my PCP wrote a note that specified I can not walk more than 200 feet ( based on that is when my symptoms start, not necessarily the fainting ). At work I also - in addition to a desk job - had to use a wheel chair per human resources department. But in the end that too was too much. What finally drew the last straw was the fact that I was too unreliable to work b/c I had to miss so much work and call off due to my symptoms. - Your PCP needs to clarify your abilities, if the nurse is not willing or able to then you need to make an appointment with the doctor and go over it with him. The more specific your restrictions are spelled out the better it is , for insurance purposes as well as for SSDI in the future. --- I would get the gears rolling and apply for SSDI - even though you probably will be denied initially, but it will get you started. It took me 2 years which is common. And you truly are not able to work from what you say. In my case continouing to work and pushing myself made my POTS worse. At least you will have some income from your wife's SSDI in the meantime. Hang in there - it will get sorted out.

I was 42 when I became symptomatic with POTS. Since then I had too-many-to-count ER visits and Observation hospital stays for POTS related symptoms, including chest pain, shortness-of-breath, syncope, seizures, tachycardia, hypertension. Even when I was MOST symptomatic - and thought I for sure was having a heart attack - my cardiac enzymes were always normal. This was despite having tachycardia and PVC's on my EKG as well as T-wave inversion ( an anomaly in the EKG that could indicate MI - but in my case is harmless because it is always there ). Ususally the doctors are looking for a change in the EKG along with a significant elevation in cardiac enzymes in order to determine any damage to the heart muscle. I would trust your ER doctor. Have they checked 3 sets of cardiac enzymes over 24 hours?

@MeganMN - any infection or inflammation can worsen POTS. If you have chronic sinus infection this can put enormous stress on your body due to the overactivity of the immune system constantly fighting the infection. Maybe that is why you mentioned in another post that Sudafed made you feel better? If they are treating your sinus infection with antibiotics you might find some relief even of your POTS symptoms. Are you seeing an ENT?

@MeganMN -when you go to the EP go prepared: write a list of all of your symptoms and BP or HR readings when you feel bad. Tell him what triggers your flares and what makes you feel better. If he dismisses any of your symptoms than he is not a good one! EP's often are trained to just concentrate on the heart itself, especially the electrical system of it. They sometimes forget that the heart is ONE part of the cardio-vascular system and is regulated by many other influences. That is the nature of the ANS's cardiac branch. Also - tachycadia, palpitaitons and syncope are only ONE part of POTS: fatigue, weakness, exercise intolerance, GI problems etc are also important symtpoms that need to be addressed b/c they affect our quality of life. An EP most likely will concentrate on any cardiac symptoms - and that is his area of expertise, so it is a good starting point. --- I had 5 cardiologist before I found my current one and also my specialist. They as well as my PCP are all wonderful and understand that POTS affects the whole body and person, so they address ALL of my symptoms. THAT is what you hope to find in a good EP capable to treat POTS. But having said that - it takes a village!!! Most of us have several docs so do not expect a miracle. But there should be some treatment recommendation to give you relief!!! Best of luck - please keep us posted how the appointment went!!!

I used to get these episodes ( and worse ) regularly when I was still working bc/ I had no choice but to push myself to do more than I should. I still get them but rarely. In my case even meds could not get rid of them completely but becoming disabled and limiting my activity to whatever my abilities are on any given day has improved them greatly. If I am in a triggered flare ( colds, surgeries etc ) then I need bedrest and IV fluids followed by slow reconditioning.