Pistol

I saw my PCP from the onset of symptoms and he helped me through all of the (5) cardiologists that did not know anything about POTS and messed up everything by prescribing stupid useless meds. I was referred to an autonomic specialist out of state, that took 1 year waiting. In the meantime my PCP was by my side, fighting with and for me and learning about POTS along the way. He did not know anything about dysautonomia at first but that did not stop him from treating me - he is wonderful and still my #1 doc. So - yes, you can be treated by a GP as long as he knows about POTS. Treatment id frustrating because it takes so much hit-and-misses. Good Luck - check on the physician listing on this site -maybe there is someone listed on there that is close to you?

By the way - I WAS 42 when my symptoms started, I am now 51. Also - one meal a day is not good for dysautonomia - several small meals are better, they help with the GI issues but also prevent surges and nutritional problems. Do you drink enough fluids? Do you load up on electrolytes and salt?

What you describe sounds almost exactly like my story - 42 years old and same BP fluctuations and symptoms. I was started on metoprolol then bystolic - which both made things worse. Then midodrine ( worse ), clonidine ( worse ), compression stockings ( worse ), salt tablets ( could not tolerate ) - I had to keep cutting down on my work ( RN ) because of repeated syncopal episodes and eventually seizures from extreme vasoconstriction. I finally saw an autonomic specialist ( took one year to get in with him ) who diagnosed me with hyperadrenergic POTS based on Tilt tests, labs, Vital signs and symptoms. The medicine that helped me most was Carvelidol ( which is both beta- and alpha bocker ) but also vasodilators like Diltiazem. Most effective for surges and flares are saline infusions over 24 hours - they seem to interrupt the cycle that causes the ANS to respond with vasoconstriction. Actually - when my BP is high the infusions cause the BP to normalize and symptoms like Chest pain, headache, shaking, syncope etc go away. A normal response to IV fluids is an elevation in BP - everything is opposite with me. ---- The diastolic elevation also is what I have. ---- Most cardiologists are dismissive towards POTS - I believe it is because our symptoms are opposite of what they are taught the body does and that means they would have to rethink everything they were taught. But it sounds like you have a competent neurologist who - at least - understands your symptoms. Unfortunately you need a cardiologist to treat many of your symptoms. I can only recommend that you search for a cardiologist familiar with dysautonomia - you may have to go out-of-state if there is not one in your area. ( that's what I had to do ). There are several listed on this site. In the mean time - ask your doctors if any or them would consider Saline infusions for your flares - I experience many of the same symptoms and they do help me a lot. Best of luck to you - keep going!

I am a firm believer of bringing your research with you to your appointments. That is how I still treat my docs: anything I feel needs to be checked or addressed and I have to see a doc who is not familiar with POTS - I bring applicable studies or articles with me to the appointment. Although I am very lucky - my PCP was willing to go the road of discovering POTS with me, every step of the way. Today he is the one who oversees ALL of my medical needs - even if I have to see a specialist for something, HE is the one who pulls the strings and lets the MD's know what I have and need. My local hospital even developed a careplan designed by me and my PCP to instruct other docs what to do because I often was dismissed by ER docs when I needed IV's for POTS but they did not understand why and sent me home. Today I have a plan-of-care attached to my record that instructs other docs about my medical needs and it is so much easier for everybody. I no longer have to try to explain or justify why I need help - it is no longer up to each individual MD's opinion. Unfortunately there is not yet a standard-of-care (like for other chronic illnesses) for POTS that automatically instructs docs on what tests, meds or treatments to use for an individual diagnosis ( i.e. asthma, COPD, CHF etc. ). So they can do as they please and if they feel you are making it up or have anxiety or seek attention - well then they can just send you home. Syncope, tachycardia, most POTS symptoms are not life-threatening, so they can just pass the buck. It is up to US to stand up for ourselves - it is wrong but it is what it is. Just keep looking for informed and understanding docs ( and when you find one please refer them to this forum to be added to the list.)

A tilt test will show if you have orthostatic intolerance from POTS if your HR goes up 30 BPM upon standing or HR above 120 BPM. It can also show NCS if you pass out or your HR drops. It will not show the type of POTS, this has to be determined by the MD that treats you. I have hyperadrenergic POTS and had 2 tilt tests, one showed NCS and one was positive for POTS but the cardiologist doing the test did not recognize POTS. Only once I saw an autonomic specialist was I immediately diagnosed with hyperPOTS based on symptoms, Vital signs and a blood test for neuro transmitters ( norepinephrine and dopamine ), first after resting for 30 minutes and then after walking for 30 minutes. If your tilt test is positive you should see someone familiar with diagnosing and treating POTS. I do not know who does that in Australia but check on the physician list on this web site, there are physicians listed all over the world. Best of luck - keep us posted! If you have questions about it you can PM me.

There are several studies available online that address this , check on thedysautonomiaproject.org or google IV therapy for POTS article by Dr Blair Grubb MD. You can show them to your doctor, it might convince him hearing it from autonomic specialists that treat hundreds of patients. I myself benefit greatly from periodic infusions. Best of luck!!

Thank you all so much for your replies - it reassures me that she will have to face the possibility that she may have POTS. As all mothers know: we want so much to save our children from pain and worry - but sometimes we can't. I appreciate all of your advice !

Hi - I have hyper-POTS, so do my mother and sister. My 13 year old daughter has passed out in the past and has intermittent tachycardia but nothing too alarming. Recently she had a sports injury and has been passive for 3 months ( usually very active ). Now she often complains of chest pain, shortness of breath and dizziness and when I check her Pulse it is racing and irregular. When she gets out of the shower her feet are bright red. She also has asthma so I her PCP said not to give her her inhaler for the breathing due to the tachycardia. In the past she had a holter that showed sinus tachycardia. Since I am disabled from POTS and often bed ridden she is very scared to get it also. I do not want to worry her too early but I am wondering if I should take her to my autonomic specialist? Is it too early? Should I wait for more severe symptoms before I go that route? For now I have told her to drink a lot and eat more salt. Does any one here think I am over reacting with my concerns or am I right to suspect POTS from those symptoms?

When it ran out they removed it (both surgeries - inserting and removing - are simple and easily tolerable procedures), they did not give me a new one because the initial reason for it was to determine if my syncopal episodes and seizures were due to low HR so I might qualify for a pacermaker (they were not). I live in the US. I am a big supporter of ILR's ( inserted Loop Recorders ) because they record every heart beat, are easy to use ( you send the data by cell or land line to your ordering physician monthly or earlier if you have an event ) and the recordings show without a doubt what goes on with your heart rhythm every second of every day. In my case it confirmed the diagnosis of POTS and showed that I was not a candidate for a pacer.

I would like to ask anyone with low iron/ferritin what oral supplements actually work. I eat a high iron (sort of) diet, yet are low in ferritin. Does that mean if I take ferrous sulfate (or others) that this iron will not be metabolized either? My PCP suggested to take an iron supplement daily and recheck ferritin in 6 months. How do I know if my body absorbs the iron supplement if it does not absorb the iron from my diet? Also - I take Protonix 2 x daily for my extreme indigestion caused by dysautonomia - does that not cause problems with absorption? I know that these are questions for my docs but I am just asking for experiences of others, not medical advice ( I do have wonderful docs - but I AM my own advocate ) . I am ever so grateful for the advice we give each other - thanks!

@Bluebonnet08Thanks for bringing ferritin to our attention. I just had mine checked today because of your post & it is low at 4! Wirhout your info I would not have known to check it.

Did you ever look up adrenal fatigue? I know someone who experienced similar symptoms as you describe following a stressful period and she was diagnosed with that.

I know that drinking water can make you sick to your stomach and so can salt supplements. I solved that problem by eating salty things such as marinated olives, pretzels, pickles (however the vinegar in those may give you problems) - drinking ginger ale has helped me maintain my fluids ( but increases sugar intake and is not for every one). IV fluids sound like something that might help you in the long run, it is that way for many of us. Maybe your cardiologist might consider weekly infusions for a while until you improve enough to maintain balance with hydration, salt and mild exercise? This regimen has helped many of us get back on our feet when we are acutely ill with POTS symptoms.

I have both Vit D and B12 deficiencies since childhood, it is apparently due to malabsorption. Take B12 shots monthly and D3 supplements. In the winter D dropped due to lack of exposure to sun so I need to boost extra during those months. Both of those vitamins cause - when deficient - fatigue, depression, weakness and in my case also imbalance of POTS related symptoms. I can definitely tell when I need to boost extra on the Vit D and improve rapidly with weekly doses of 50,000 units for a month, then 2000 daily. Iron also gets you weak - it is important to supplement with iron during pregnancy. Vit D3 is available in drops or tablets but B12 should be given IM since often people don't absorb enough of it in their GI tract. It looks like you might feel much better if you take these supplements. Ask your doc if you should take a loading dose of D since low supplementation usually does not bring the level up. Best of Luck!!!

I do not know what country you moved to but usually cardiologists ( specifically Electro-Physiologists ) know about POTS. They see patients with this because of the Tachycardia. They also perform the Tilt-table-test. In the meantime you may want to - Drink fluids, increase salt, green leafy veggies and red meat to increase iron and combat anemia ... try to avoid heat and prolonged standing, wear compression stockings .... bets of luck, let us know how things go.

OK - first of all you need to tell your physician that you need to be evaluated to rule out dysautonomia. You may want your blood work to include a CBC, that will tell you if you are anemic. POTS will get worse with anemia, so just a low hgb does not mean you do not have POTS. Getting orthostatic VS done at your visit could give a clue about dysautonomia. The doc might want to order a Tilt-table-study to confirm POTS or other autonomic issues. --- Yes - for many POTS patients symptoms fluctuate. ---- Please be specific when describing your symptoms to your physician, if you are concerned about POTS ( and you do have some symptoms indicating you might ) then he needs to rule it out. This process will show if you have it or not. If your doc is not familiar with POTS then he may not be able to test for it. Whenever I need to see a new doc I make sure I ask if he knows hoe to reat dysautonomia before I make the appointment, this includes family physicians. Good Luck - I hope you will find answers.

I am so very sorry to that you both are going through this. I agree with the posts - POTS symptoms are so difficult to endure AND to explain for people who can verbalize them, it must be very scary for your son and heartbreaking for you. I am wondering if a good specialist in autism might be able to help with the outbreaks. The POTS symptoms generally take a long time to get under control but could someone with experience in autism help him deal with them and - do YOU have someone to support you with all these issues?

@Pearlie - I take Nitropatch for prinz metal angina, it does not affect me in a negative way. Clonidine was AWFUL. Hope you will find a doc who is more open. We need to educate ourselves on our symptoms and ways to fix them, especially with doctors who seem to know it all ( which boils down to blaming everything on anxiety ) That is something that baffles me - how some docs think that since they don't understand our symptoms we can't really have them. One EP once told me that it is impossible to have BP's like I do so I am "hysterical". FOR REAL! --- I am lucky to have the best PCP ever, he has been there for me since my first syncopal episode and is always open to hear about my research. Keep looking - they are out there.

In addition to many dysautonomia symptoms I also had periodic flushing, rashes and itching. I asked my ( wonderful and understanding ) PCP to check for MCAS and he referred me to a ENT/Allergist. She checked special labs and a urine test and all was well. That was very reassuring. Maybe you could ask to get tested for MCAS? It is just some blood tests.

Hi - I have hyperPOTS with both Hyper- and hypotension. I pass out when my blood vessels dilate and cause a drop in BP and I take seizures when my boodvessels constrict and cause hypertension. Sometimes I also have supine Hypertension followed by orthostatic hypotension. In addition to other meds ( for other symptoms caused by POTS ) my BP and HR are somewhat controlled with Carvelidol, Diltiazem and guanfacine. I had to do some experimenting ( a pinch of this and a half of that and double of the other ) until I got the dose just right. Most days are OK but when I get unstable I might add half of a Carvelidol for the Hypertension. However - when I crash and my Bp is too high when lying down and/or drops when upright I go to the hospital for Fluids oversight, I just had to do that 2 days ago. When I go in I am sick as a dog, cannot walk, Bp is 140/98 ( at least ) and after my first liter of Lactated Ringers it is down to 118/60. The next morning, after 24 hours of fluids, I am a new person. --- To the question about fluids and salt: I do try to drink fluids but cannot drink water due to GI issues, so I drink gingerale. But I DO take in a huge amount of dietary salt and it does not at all increase my BP on good days. My dysautonomia specialist told me once that when it gets to the point of having both hyper- and hypotension than there is not much we can do with medications. For me the IV fluids always " reset " the faulty mechanism. I hope this does not discourage you but hopefully help you. Best of luck - it is not often to hear from someone who also has this particular dilemma.

When I first started taking beta blockers to fight Tachy and hypertension my HR would start to go down to 40 sometines. It stopped when I was also put on Diltiaem and switched to a different BB. Do you take meds that could drop your HR?

Some medications used for POTS can cause electrolyte imbalance which could lead to spasms. Maybe have bloodwork drawn to check this and talk to your doc or pharmacist to see if any meds could be the cause?

Have you had an MRI of the brain?

Sorry - I got the worst symptoms at 42 and am now 51 with no end in sight. My mother and sisters also have it ( thankfully not as severe ) and they all got it during menopause. I have however met people who would get it bad during pregnancy and then improved after. I hope the latter is the case for you

Hi - I just now posted something about flares, you might want to read the post on flares. I have hyperPOTS and was on Metoprolol, the same thing happened to me, it just stopped working. My systolic BP is also always high although I have HTN. When I switched from Metoprolol to Carvelidol and then gradually increased the dose from 6.25 to 25 mg it helped. But I also ended needing Diltiazem and Guanfacine to control my BP. I also experienced that at first the meds would work for a while but then it was as if suddenly my body became intolerant to them - they just stopped working. I now also take Lexapro, Ritalin, B 12 shots, Vitamin D ( was extremely deficient ) plus several GI meds and this concoction has worked for me for the last 2 years. It does not prevent the flares but keeps me somewhat stable between them Maybe you could discuss this with your cardiologist - best of luck!