Pistol

I have floaters or colors in my vision right before I pass out - they go away if I lie down in time … or pass out. I believe that certain vision changes can be a sign of presyncope.

Dear @dannyg - I agree with what other members have suggested: ask to speak to a case manager at the hospital where you get your procedures done, it is their job to help people just like you. Also - my father-in-law had prostrate cancer that spread to his bladder and after surgery and radiation he is now a 15 year survivor ( was told he had 5 years ). Keep seeing your doctors and follow their instructions. Best wishes!!!!

I was diagnosed - and extremely symptomatic with - POTS long before I was diagnosed with ADD. It was when I got worried that my inability to concentrate or remember was caused by so many falls and hitting my head that I sought treatment by a neuropsychologist. She told me that I had ADD and had compensated for it since childhood but that the worsening POTS had made the ADD worse as well. I am not sure if ADD can be a symptom of POTS or not but in my case I had symptoms of BOTH since early childhood.

@jeff_jefferson2 he uses a brand he ordered online, it has both pre-and probiotics. But there are many good brands available at your local pharmacies. They can be pricey but the product he uses is reasonable priced - it is from Spring Valley. But I was told that there is a better one called digestive advantage.

@jeff_jefferson2 - my husband had severe problems with bloating and has Small intestinal bacterial overgrowth. He used to look like a 5 month pregnant person and also suffered from belching. EGD and colonoscopy and biopsies were all normal. He improved after including pre- and pro-biotics into his diet and cut out certain fats ( such as are in most snack foods ). Also it may be important to notice the appearance of the stool: if it floats there may be an abundance of fats, if it is too loose or too hard it may mean you need to add fiber. I assume that during your surgery you had antibiotics - they CAN ( but do not have to ) cause a change in the amount of bacteria we have in our gut and this can also cause a lot of issues such as bloating and belching.

Hello - and welcome to this forum!!! I am sorry to hear your story, you sure have had a hard time!!! Regarding your GI issues: I have similar problems from POTS and have been through the wringer with tests. I also was prescribed Pantoprazole twice a day. I have Barrett's esophagus ( precancerous changes in the lining of the esophagus ) from the relentless overproduction of acid. What has helped very much is a change in my eating habits and diet: no fresh vegetables, minimal dairy, low acid and several snacks a day rather than 3 meals. This has improved the GI symptoms greatly. -- I also believe that the surgery and subsequent bed rest could have caused your symptoms. Whenever we are not able to get up and exercise for an extended time the body looses the ability to adjust to orthostatic changes and this can lead to tachycardia and orthostatic intolerance as you describe. Slow reconditioning is the key. Have you considered seeing a physical therapist? They can advise you on exercises that are safe to do with your back but increase your resistance to orthostasis. Several members on this forum ( myself included ) have found improvement from daily targeted exercises. -- Also: the TTT should show if you have POTS or orthostatic hypotension. Most of the people on this forum have been referred for treatment by an autonomic specialist., there is a physician directory on this site if you are interested. Please keep us posted on your progress! Be well!

@brainchild - you are doing such a good job researching and advocating for yourself! I hope all will go well and you can find relief. Keep up the good work!!!!!

Hello @StayAtHomeMom - POTS runs in my family, mother/ sisters/ nieces all have it. We all have hyperadrenergic POTS with hypertension but all at various severities. I believe that our type of POTS is - apparently - genetic. Regarding underlying cause: in many cases it cannot be determined. The most important thing is that you find treatment and that is usually by trial-and-error. --- I have heard that the younger we are when POTS starts the better the outcome - although that is probably not always the case. I personally know several people who developed POTS at a young age and ended up with almost complete recovery. I hope this is the case with your son. Best wishes!!!

This morning I woke up in full POTS mode - tachycardia, chest pain, dizziness, close to passing out, palpitations … and then I realized that I forgot my meds last night. This was a good reminder to me how good I am actually doing when I take them and how bad it used to be to have POTS. So - next time I complain I will remind myself of today and count my blessings. I love my meds!!!!!

I am not knowledgeable about the effects of chemo on POTS but I would think that the biggest problem might be the nausea and vomiting that can occur with certain chemo agents. But in any case - chemo is a life-saving medication and there is no way to go without, so you may have to just see what happens. Everybody responds differently, she might do better than you think. I know that IV fluids are many times given to minimize the dehydration from chemo and this is also a very effective treatment for POTS. I know that at our local cancer center the nurses are very good and provide IV fluids when needed and as ordered by the oncologist - that could help with some of her POTS symptoms. Best of luck !!!!!

@brainchild - according to literature the current recommendation for elastic hose is at least 30-40 mmHg ankle counterpressure, works best if waist high. Regarding the blood pooling or excessive vasoconstriction - the best way to determine that is by measuring your BP. In general blood pooling will contribute to hypotension OR tachycardia, vasoconstriction - in my case - causes high BP and tachycardia. --- The commonly ordered tests to determine dysautonomia are EKG, Echo, TTT, halter monitor, stress test. If I am not mistaken the TTT is the one that provides the actual diagnosis of POTS, I am not sure if it can be properly diagnosed without a TTT. Most patients have that test done initially. There are also other autonomic tests that can be done and are usually performed by a specialist. Like I said - it is very important to measure your BP and HR often since this is a good indication of what is going on with your ANS.

@Iheartfrogs217 - your doctor is wrong to dismiss your syncope as "just POTS". I used to faint just like you and was diagnosed with NCS after a TTT, the POTS diagnosis came later. Yes - the cardiologists also told me that I will just keep passing out, put me on a beta blocker and sent me on my way. Only my PCP - who witnessed many of my syncopal episodes b/c we used to work together - saw how bad I really was and took this serious. Eventually I was seen by an autonomic specialist who started me on medications and diagnosed me with hyperadrenergic POTS as well as NCS. You are right - POTS mostly causes symptoms when upright but NCS causes syncope in any position. They are both dysautonomias and treatment is similar. Are you doing the treatments that are recommended - 2 l fluid a day, increased salt intake, compression stockings … ? Are you on any meds? What does your BP and HR run? Have you had a TTT? Have you had a halter monitor? --- The frequency of syncope that you are experiencing is not acceptable and you should really see your doctor immediately. When I was as bad as you are now the only thing that gave me some relief were IV fluids. I used to work at a hospital and would pass out at work all of the time - they would send me to the ER for IV fluids and I would get some relief for several days. BE CAREFUL!!! The worst thing about fainting are the injuries you can obtain - I had several concussions, broken ribs and bad bruises from the falls. Again - please see your PCP or cardiologist right away, this should not be dismissed because it is scary and you CAN improve with proper treatment.

Dear @brainchild - welcome! I am sorry that you are unwell but it is really impressive how well you have researched this!!! - I am not able to answer all of your questions but some. Compression stockings are recommended for MOST Pots patients, except for those that suffer from excessive vasoconstriction ( like myself - I have hyper-POTS and Raynaud's and cannot wear them ). And yes - compression can be helpful for other reasons as well. In most articles they recommend wait-high since knee-high compression stockings still allow for some pooling. If you do not have pooling ( mind you - you may have it and not be aware of it!!! ) compression will help to prevent your BP from dropping. But size and strength are up to your physician. The best way to get accurate and individual fitting is by getting fitted by a medical professional, such as you find in any medical supply store. BTW - you do not NEED a prescription but if you have one your insurance may cover part of the cost. I personally would not go with online stockings for the first pair, I would get fitted for the first pair and when you have the right size you can maybe order the next pair online since you will know the size. Congrats to doing all the things you should do to minimize symptoms. What tests did the cardiologist order to diagnose you? And regarding the appointment with the PCP: since you have the diagnosis the PCP will have to inform himself about POTS. A good thing is that you have the cardiologist - he can work with your PCP. It is OK that the cardiologist wants the PCP to order certain things - that is what the PCP does. You can go to thedysautonomiaproject.org - they have a book that explains POTS to both doctors and patients - I gave a copy to my PCP and the cardiologist had one as well. My PCP is wonderful - he did not know anything about dysautonomia but worked with me, treating every symptom as it came up and by now he is VERY familiar with POTS!!! I have found that some PCP's are more open to POTS than some cardiologists and therefore more helpful. Best of luck - and keep us posted on your progress!!!!

@RecipeForDisaster I am sorry to ask but - what does MTHFR stand for?

Dear @RecipeForDisaster - DON'T throw out your fluids!!!! There will always be times when you need them, illness, stress, surgery etc,. But it is GREAT if you do not have to rely on them on a weekly basis!!! I am glad that you find improvement from the Adderall - Ritalin also helps me so much!!! --- The best thing about the IV fluids is that I can actually function - I do not have to drag myself around and force myself to do things. I actually have energy and some endurance as well!!! --- I bet yesterdays set-back was due to the fact that I felt so good that I decided to take a little walk. AND then cooked a casserole for church and had to stand at the stove. So - I guess it was poor judgement rather the lower dose of Diltiazem.!😏

I have hypertension whenever I faint/ take seizures. In my case excessive sympathetic activity constricts all the blood vessels ( hence hypertension ) but there is no blood flow to the brain due to the vasoconstriction.

I know that feeling Julyrose! I would have to crawl to go to the bathroom or else I would faint!!! For me it was never possible to wait it out - once I got that sick my PCP put me in the hospital for IV fluids. All was well after the first bag!!!! Today - thanks to weekly IV's - I no longer get that bad. Thank god your husband will be home soon! Take care - and seek treatment!!!!

W-E-L-L …. today was the first day on the lesser dose and I am sorry to admit - I went down. BUT --- it is the first day, so it could be expected. I still have an awesome record, I still feel great. Who says that a little faint is a big deal? I am going to BEAT my OLD record now!!!! - I will update. All is well!!!!!

Dear @Delmar I am so very sorry to hear about your struggles. I too have been exposed to ignorant and incapable MD's and have been damaged by them. Have you been diagnosed with dysautonomia? And what meds/ treatments do you take/follow? Is Mestinon your only med prescribed?

Another update: had cardiology follow up today: able to decrease Diltiazem from 240 mg to 180 mg because since the weekly IV fluids my BP is running on the LOW side!!!!! Also I am just short of 5 months without syncope/ seizures/ hospitalization/ ER visit. Current research does not recommend long-term IV fluid therapy for POTS ( just short-term and emergency fluids ) but in my case this was never enough to permanently improve my symptoms. How much more proof is needed to show that long-term IV therapy IS effective in severe cases?

@RecipeForDisaster - I take Ritalin for years - it was prescribed for fatigue and cognitive issues stemming from POTS. I tolerate it well. It also helps for ADD ( which I have ). I take the lowest dose in the morning and I really have a lot more energy and can be more active. I cannot take it at night or I can't sleep. I also used to have insomnia very badly and that also contributed to my fatigue during the day. Since taking the Ritalin I am able to do more during the day and therefore sleep better at night. I wish you great success and improvement from the Adderall!!! Hopefully the side effects are temporary - I have found that with some meds the body needs a while to adjust to it.

My autonomic specialist mentioned once that headaches are common in POTS. He actually seemed surprised that I do not suffer from them. I am not sure if you tolerate caffeine but some OTC headache meds have this in them, it helps many but may be bad for your POTS. If you tolerate caffeine - meds containing caffeine are the go-to for my husband who suffers from cluster headaches.

Hi - this is exactly what happens to me: the POTS gets worse a few days before I get sick. I do believe that in the 2 days or so before a cold or viral infection the immune system is acting up, this causes the body stress and we get symptomatic ( my own theory ). --- I am glad to hear that you are doing a bit better - be well!!!!!

I am not sure what the mechanism is behind it but I also improve from taking slow, deep breaths when I am in a hyper-POTS flare. I personally believe that it helps to calm down as well as help oxygenation.

I am glad he is being referred to a specialist - personally I would see a neurologist. Good luck!!!