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@Lainy - I have NCS and hyperadrenergic POTS and used to pass out or take autonomic seizures ( like convulsive syncope ) several times a week or even several times a day sometimes. I also had this happen while eating often, just like you describe. Usually I am only out for up to 1 minutes or less. The extreme dizziness you describe is pre-syncope and if it happens again you need to lie on the floor immediately to avoid injuries. You should ask for a referral to a cardiologist. In the meantime drink fluids, increase salt intake and get fitted for compression hose - that is the usual NCS treatment. Also - check your pulse when you get dizzy and measure your BP. The vertigo and headaches could just be from low BP but also can be more serious, so I would get them checked. Did the ER give you any meds for the dizziness? I used to take Meclizine for that and it helped. Please follow up with your PCP and cardiologist or neurologist. They may even want to order a MRI of your brain. Best of luck!!!!!!!

@kisekis - I have hyperadrenergic POTS and get the surges both standing and supine. I used to even pass out while sitting. The way I understand it is that standing causes excessive norepinephrine to be put out which happens to every one but in dysautonomia the levels do not go back down which causes the surges. But orthostasis is only ONE trigger - there are others ( like eating, over-stimulation, heat/cold, stress …). My nightly surges are typically after 3 hours of sleep, when the bodies adrenaline levels normally begin to drop to start the REM cycle. For me the levels do not drop but go up at that time and I wake up with tachycardia and high BP. Then I have to calm myself down and distract myself by reading or something like that until the levels come down and then go back to sleep ( only to do it again 3 hours later ). This does not happen every night but it happens when I am in a flare. Normally I can sleep relatively good.

Dear @kisekis - an autonomic specialist can be neurologist or cardiologist or even endocrinonologist, it is a doctor who specializes in autonomic dysfunction. Most often they are cardiologists because the most severe symptoms are tachycardia and cardiovascular problems. --- About the ANA: don't worry necessarily about the BB, I have taken different BB's for almost 10 years and my ANA etc is always normal. Replenishing the Vit D is very important. Here in the US they order loading doses of up to 50,000 Units Vit D weekly for up to 3 months and then 2000 units daily. Just supplementing daily with a maintenance dose is not enough to bring the levels up. I would try to find a cardiologist who is familiar with dysautonomia if there is one in your country.

@voxel - are you taking a new med? I have developed acute hypotension from new meds like BB or calcium channel blockers before and needed to decrease the dosage until my BP started to become high again and then increase again. We are extremely sensitive to meds, so that could be possible. -- Yes - I salt-load along with fluids and it helps for me somewhat but when I get hypo-or hprtensive I get IV fluids and that fixes it.

@Robertlg1967 - I have found that most pharmacies have assistance programs for patients without insurance. When I could not pay for some meds they scanned some card and I got a huge discount. Call around and ask major chain pharmacies if they have a program like that for you. I also know that some people get their drugs for much cheaper from a mail-in ppharmacy in Canada. And it is true that some times the manufacturer will give a discount.

I agree with bobmsh3ll. I also have been very anxious every time I start a new drug and always try half of the lowest dose ( per recommendation of my specialist ). Most of the time nothing really bad happens. Sometimes I think I want to stop a new drug because of some side effect but most of the time it gets better once the body adjusts to it. And in most cases the new drugs help me. Be brave - and I hope it works for you. If we are too afraid to try new things then everything will stay the way it is - that is enough encouragement for me to take the med!!!

@blizzard2014 - I am so sorry about your cat. I know how heart wrenching the decision to put your pet down is, I had to do it to my pets before. But remember - when they suffer like that then we are doing them a favor by ending the suffering for them.

@bombsh3ll - I get 1 liter over 8 hours weekly but if I get bad I can have 3 liters over 24 hours. That is what I used to get hospitalized for and it fixed everything - chest pain, hypertension, nausea, peeing too much, syncope upon standing etc. I have tried 1 liter over 2 hours but it does not work as good as the 8 hour infusion, nut I know of others who get them and it works for them. Also - bolus does not do anything for me either. It seems that the longer infusions counteract the vasoconstriction and break the cycle. Best of luck to you!!!! ( I had the IV fluids for years by peripheral access but I developed phlebitis 4 times. That plus the weekly home infusions justified the port.)

@blizzard2014 - please see your doc ASAP for these symptoms. I know you are a diabetic and throwing up like that - and not eating - can be very serious. Whether it is gastroparesis or a stomach virus - you need to let your doctor know what is going on!!!!

@joiedevivre - I am in the US and have no advice regarding canadian health care but … I have only the best to say about IV fluids. I am sitting in my living room right now with my second bag of fluids going. I felt terrible yesterday with a bad flare coming ( high BP, tachy, dizziness etc ), but I get IV fluids once a week by home health. This time I askes for more than 1 bag due to my symptoms and I am FEELING GREAT!!!!! In the past I would end up being admitted to hospital with hypertension, syncope and even seizures from my POTS symptoms. Now I can be in my home without any type of emergency treatment and all my symptoms are gone … it is a miracle treatment and I can only recommend it if you are not responding to other treatments or meds. Best of luck!!!!!

@peachychou123 - I have been somewhat controlled with meds and lifestyle adjustments to where I can tell when I get bad and get IV fluids to control my symptoms. If I did not have that option then I would be a complete mess - both physically and psychologically. ABSOLUTELY - when I get sick in ANY way my POTS flares and I will need fluids and bed rest. But I also know that if I get the bedrest WITHOUT the fluids I will not be able to function at ALL, even when the acute illness improves. My point is: if your current treatment is not enough to help you then you need better treatment. I understand that you have been to ER many times but ER only stabilized you until you can see your PCP - the PCP has to intervene and order treatments or testing. So - you need to bring your concerns to your treating physicians, and if they do not seem to satisfy your needs then you should find a doc who does. If you have been diagnosed with dysautonomia you will need to fins a specialist trained in that field. If you had rheumatoid arthritis you go to a rheumatologist: for stomach issues you would see a GI specialist and for a broken bone you would seek advice from an orthopedic …. the same it goes with dysautonomia!

@peachychou123 - you are experiencing the typical POTS dilemma: does the anxiety cause the tachycardia or does the tachycardia cause the anxiety? This is exactly why many of us get the anxiety thrown at us. It is true: a typical POTS patient has a completely normal heart despite all of the tachy/palpitations and there are studies that claim the "normal" POTS patient does not have elevated symptoms of anxiety. However: to distinguish between anxiety and POTS they do a TTT - and based on that they will make the differentiation. If you suspect POTS then you should ask your cardiologist to order a TTT. That is how POTS is currently diagnosed ( as well as symptoms and length of symptoms).

I used to get HORRIBLE PVC's - multifocal/triplets/bigeminy/trigeminy ( which means 2 or 3 in a row or every other beat or every third beat ) but since I am on BB and calcium channel blocker they have almost subsided(so has my tachycardia). They - in themselves - are not dangerous but they do indicate an irritable ANS. I know that some people are afraid of beta blockers but it all depends what you are more bothered by: the fact that you take BB or the fact that you have PVC's. Beta blockers are what are used to treat these symptoms. If you are not already taking one then you may want to check with your cardiologist about starting one. If you are already taking one and your palpitations persist you may want to check if your dosage needs to be increased or the BB needs to be changed.

@peachychou123 - I have POTS and angina, I always get chest pains when my POTS flares. It is definitely a very concerning and bothersome pain but my heart cath and sterss tests were not showing anything concerning. Please know that chest pain is a common symptom for POTS - most of us have it. If your tests continuously show nothing bad and your pain comes and goes you may just have the ususal POTS chest pain. DO follow up with your cardiologist but also be assured that it is a "normal" symptom of POTS.

That is a tough one. Beta blockers are highly individual in effectiveness. I have taken 4 different ones before finding the one that worked for me. I have a 13 year old daughter that also is displaying symptoms of POTS (it runs in my family) but so far she has been able to manage without meds. If she continues with her symptoms as you describe I think it is reasonable to try a different approach. Maybe even a different med? I am not current on pediatrics but maybe midodrine? One thing I would consider is seeing a cardiologist if she uses a beta blocker. --- I know from my own history that if she continues to faint the BB is not effective. Does she do salt/hydration/compression hose? Does she exercise to tolerance daily? Is she seeing an autonomic specialist? --

Please know that it is normal to feel groggy etc after switching or starting beta blockers. In most cases this will go away after a few weeks. I took 4 beta blockers over the years and the dizziness/sleepiness happened with all of them but in all cases became completely tolerable. As long as your POTS symptoms improve you should continue it for a few weeks to see how it affects you long term. Our bodies are not machines - they need time to adjust, especially dysautonomia sufferers are very sensitive to meds. So - one or two days do not mean anything, give it more time. Do not switch up dosages because you will not be able to determine the effectiveness of the med. BE PATIENT!!!!

I am so sorry you are going through this. I have been dealing with dysautonomia for 9 years and went through the same uncertainty - and frustration - you are describing. I also have bladder and stomach issues in addition to many other symptoms from dysautonomia. The biggest advise I can give is that it does not stay the same for ever. Some days my stomach/bladder/heart issues are the most bothersome and other days it is the fatigue/brain fog/insomnia. Ove the years I have learned many ways to counter-act or deal with these issues. --- The nausea used to be unbearable, I could not even drink water without suffering from it. It came immediately after putting anything down and often came in waves. Today I am better controlled - I eat frequent small meals, drink ginger ale instead of plain water (I tolerate carbonated drinks much better than water), avoid trigger foods (spicy/acidic/fatty/heavy) and take several GI meds daily as well as Zofran as needed. For the fatigue, insomnia and dizziness I have noticed that mild but daily exercise are very helpful. I also take Ritalin for the brain fog and fatigue and it helps a lot. --- In the end the most important treatment for me is to live within my means - limit myself every day to what I am capable of that day. It makes life unpredictable but also tolerable. By that I mean that I can function daily without passing out or giving out. And my go-to last resort are IV fluids - I recently had a port put in and am now getting weekly home infusions with GREAT results. This - of course - is not realistic for everyone and most people can do without this drastic step. Just try to be positive, we may loose some abilities but we do not loose what matters the most. --- Tell your doc how you feel - many of your symptoms can be lessened with proper medication and lifestyle changes!

@jklass44 - my cardiologist wanted me to have it and at first I - like you - refused. But after the chest pain became very bothersome and my PCP talked me into it I agreed to have it done. If your doctor recommends it I would have it done. Even if we think there is nothing wrong - it is very important to have things ruled out. Now I know what is causing the pain and no longer have to worry every time I get bad chest pains.

@angelloz - I have prinz-metal angina, chest pain caused by spasms of the coronary arteries. This is from excessive vasoconstriction caused by ANS dysfunction. Typically it wakes me up at night or I wake up with it and it can last the whole day. Often it is accompanied by elevated BP (from vasoconstriction). Also the chest pain usually radiates up my left neck. I had several stress tests over the years but my diagnosis was made after a heart cath in January. I take nitroglycerin patch for it. ---- Just a thought: sometimes midsternal chest pain ( in the middle of the chest ) can be caused by heartburn. When you see your cardiologist and nothing shows up in any tests you might want to consider that. My husband had an episode of severe chest pain that woke him up once and he went to ER - all labs, EKG etc were normal and the cardiologist ordered a heart cath, which also was OK. His chest pain was determined to be heart burn and he was started on a proton-pump inhibitor. No more chest pain since then.

@Gerbera - I too take Ritalin for POTS related fatigue and brain fog (I was also diagnosed with ADD) and it has really worked well for me. I am not sure if it would help for dizziness though. - @DizzyGirls - wow, all the meds you list she takes for her dizziness are knock-outs! How can she function on them? -- I would give the Dramamine a try and I hope it works!!!! How are her afternoon episodes of nausea?

Have they tried meclizine?

I used to get tachycardia and skipped beats as well as syncope and presyncope all of the time - they were sinus-tachycardia and PVC's as well as PAC's. None of these are serious. The presyncopal episodes are common in POTS and in my case improved with medication and limiting my activities as well as hydration. Are you using compression hose?

I had to stop working 5 years ago and am permanently disabled from POTS. I had a hearing with a judge and he awarded me SSDI on the spot. I tried many years to work despite the POTS but I could not. If you are functioning enough that you could work they most likely will not give SSDI to you, if you can work in any other function than they will recommend what type of work you can do, i.e. if you are working in a job that requires a lot of standing or walking they might recommend a job as a secretary or anything that you can do while sitting. --- If you are able to and desiring to work then that is what you should do - depending on the job it very well could improve your symptoms. POTS waxes and wanes in most but I knw several people that were ill with POTS and now are working and living normal lives - although taking all the measures to avoid POTS symptoms. --- If working makes you worse then you can use that as a reason to apply for SSDI next time around. - You said you have a hearing coming up in January - is that for disability? Then I would try to work and see how it goes. If it does not work out you can use that in the hearing. Good luck!

I would not worry - if it only showed up in one tracing it most likely is due to the tachycardia. If it is a constant EKG reading it could mean that there is something wrong with your heart Since it was only once recorded your heart does not seem to have a serious problem.

@Berly26 - When I loose weight my POTS gets worse every time. It must have some metabolic reason. Maybe your POTS flare-up is due to the rapid weight loss?