Pistol

@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?

Hi @CK1 - I am so sorry about all this! What a disaster! I have one comment: my sister lives in Germany and she also could not get ANY help with her POTS symptoms. A year ago she came here to the US to see my specialist. He is very well known and a authority in autonomic dysfunction, he diagnosed me with hyperadrenergic POTS years ago. She waited 11 months for the appointment and it cost 360 dollars plus the flight. He spent 2 hours with her ( and had informed himself well prior to the appointment reading over her test results etc ). He diagnosed her with dysautonomia ( could not confirm hyper because she could not pay for the lab ) but said she most likely has the same type that I have. He prescribed several meds, including SNRI and recommended Modafinil ( she is not taking that currently ) as well as some cardiac meds and - she is doing great! She was close to loosing her job when she saw him and now she is top shape!!!!! If you are interested in seeing him PM me and I can give you the details. --- Another question: have they ruled out an adrenal tumor?

When women have worseining POTS symptoms during their period it is usually related to hormonal fluctuations, not blood loss. I am peri-menopausal right now and have worse POTS issues and during menopause testosterone levels are elevated in women, so I do not see a relation there.

@voxel - when they do the catecholamines they take them after 30 min of rest and then after 30 minutes of being upright. I was not particularly symptomatic that day but they were still elevated. Yes - my renin etc were all normal, just norepinephrine and dopamine were elevated. In my case with BOTH rest and being active.

@jeff_jefferson2 - I am glad your cardiologist takes your symptoms serious and is willing to test you. Most of us are not in that capable of hands! - Elevated HR upon exercise is normal and expected, desired actually! A healthy individual will try to achieve a certain HR through exercise for cardio-vascular health. The concern comes in when the HR goes up to extreme levels WITHOUT exercise - simply from the act of standing/talking/coughing/walking - even sitting, and WITHOUT any recognized arrhythmia. --- Good luck with your testing!!!!