Pistol

Dear @MeganMN - I am familiar with that dilemma! In the beginning of my illness I called my - saintly!!!! - PCP several times a week and had an appointment several times a month because I was so scared by my many symptoms. He patiently listened, never complained and tried to help with every symptom. POTS is a demanding illness for both us as well ax our docs . Over the years I have learned that certain symptoms are just a part of Pots and that I have to live with them - but it takes time to discover that. If it is something that worries you I would always call the physician - that is part of their job!!!!

In my case I also do best in the morning and become useless toward mid-afternoon. I believe this is due to the amount of energy our bodies have to use up trying to keep us upright and functioning. I am well controlled on medications and am doing well ( considering the diagnosis ) but I still have to plan my day around my symptoms. It is important to listen to our bodies and not fight them - if you get worse later in the day then try to rest in the afternoons. I take Ritalin in the morning which gives me an energy boost and stops fatigue so I can do what I have to do in the mornings and after lunch I am "retired". All appointments etc have to be scheduled for mornings or I cannot attend. Your lightheadedness might be due to pushing through your symptoms - try to schedule less demanding activities for the afternoon and do the more challenging things in the morning. --- Be good to yourself - and be well!

Regarding your question about financial resources for specialist: most clinics offer financial assistance for uninsured patients and this can significantly lower your costs. You can also go on a payment plan where you pay so much a month to pay off the bill. In any case - I would not delay seeking care due to money, that can all be worked out with the clinic. Getting proper treatment is essential! -- Regarding your unfortunate situation: have you considered talking to a social worker? They can help you with all of your questions: abuse, finding a home and job. Social services are available in any city. Be well!!!!!

@blizzard2014 - you rock! I like the way you cook and are mindful of you diet. Good job!!!!

Regarding what @StayAtHomeMom said: if I need my doctor's attention I get it - preferably by him answering my calls ASAP before I get too ill. I am blessed with doctors that are - during normal business hours - available and if I need help quick and get one then I can get another. Yes - online portals are great and I do use them but for questions that need to be answered THAT DAY I call and ask to talk to the nurse, they usually get back by the end of the day for important things.

Stress can do that - but it can also be a sign of not enough sleep, not adequate nutrition and generally unwell health. I would see the doc to make sure and maybe do blood work.

Well - I am afraid that I am a bad example, I have had 12 CT scans. Mostly head CT's due to my many syncopal episodes resulting in trauma as well as several abdominal problems resulting in surgery. Today I do not allow CT scans unless absolutely necessary.

OK - I have a dilemma. When I get into a bad spell and fatigue is in overdrive and energy is low, exercise tolerance is non-existent ( most of us are familiar with these times ) I often have trouble deciding what I should do with the time I have to be active. Example: when I am well I like to go to church with my family and then either go out to eat or enjoy a nice family dinner at home followed by games. When I am not feeling good I have to decide: church, lunch at home or games? I ususally skip church because it requires me to leave the house and interact as well as stand up - so it robs me of most of my energy and leaves me in bed for the rest of the day. So at least I can enjoy the rest of the day being halfway awake for my family. Other times I have to decide between doing chores or exercising - chores need to be dome but missing exercises will negatively affect my POTS. Another example: going to the library to get books would be cheapest but I dread standing in the aisles looking for books - it is all I can do that day. So I order my books online ( which is expensive ). So - I guess you understand my dilemmas - does anyone have any ideas as to how to decide in each scenario what YOU think would be the best way to spend valuable energy? It is truly always a decision between POTS or me/ family. --- Thank you for any replies - I appreciate them.

@KiminOrlando - based on what you just went through I would ask for hospitalization for the prep - that had to be done for me once and all went well. They gave me fluids during the entire day of the prep and I tolerated it pretty well.

Dear @m4y4_bee - you are quite considerate and sensitive towards her difficult symptoms. Yes - there are a few things you can do: the idea of offering to bring food in rather than going out is excellent. In my case I may be able to go to a restaurant but that is it for the evening. Same as movies - just the movie is enough activity. So I guess - unless she says otherwise - planning dates that require just one activity and then allow her time to retreat or rest may be preferable to her. Also planning can be difficult: if you plan a date and then she does not have the energy you may want to just stay in. And if she has a good day she may be able to say : hey, why don't we do something fun tonight? So I guess my best advice is to take it day by day. Planning days ahead is very difficult for most of us b/c our abilities fluctuate from day to day and that is very frustrating for everyone involved. -- Another thing you could do ( this is my husband's chore ) is always bring a backpack with water and salty snacks. Most of us need to drink a lot of water and increase salt intake to be able to make it through a day. plan activities that do not require a lot of walking ( no walk in the park - lol ). Again - rest periods!!!! But possibly the most valuable thing you can do for her you are already doing: be sensitive towards her limitations and be patient. Living with POTS can be sooo frustrating and trying but it is only an illness and with time and patience you both can work out what schedule is best for both of you. Best of Luck!!

Have you ever seen a nephrologist?

Dear @Mrs r - you mention that you are not taking any of the meds they have offered you so far for fear of getting worse: in my experience we cannot find what helps if we do not take the medications that are recommended by the doctors. I too was always scared to try a new medication but had I not done that then I would not be controlled today. Yes - some meds were flops and I had to stop them but others were godsent and greatly improved my symptoms. Unfortunately it is trial-and-error since no one person responds the same to meds and most of us are very sensitive to medications. However - nothing changes if we do not MAKE changes. Be brave - and work with your doctors to find the treatment that is right for you.

Dear @MeganMN - yes, I too had PAC's, PVC's, bradycardia, ST and SVT as well as atrial flutter on my monitors over the years. Once I had an implanted Loop recorder for 3 years. When I first got sick in 2009 the ectopics were unbearable to me and I too had symptoms from them. My cardiologists never were too concerned about them. I tried many BB's and they helped with various results but since I take Carvelidol they are mostly gone ( except for the occ Aflutter or tachycardia ). My autonomic specialist told me once that ectopics are a sign of an irritated ANS and I should take an increase in them as a warning sign. Over the years I do notice that they return in a flare when my symptoms get worse. From your previous posts it sounds like you are going through a rough patch right now - what did you cardiologist recommend to control your arrhythmias and ectopics? As far as I know PAC's and PVC's are considered harmless but if they are causing symptoms I would hope that the doctors would take them serious - they did in my case.

@KiminOrlando - two years ago I was supposed to have a colonoscopy but my PCP wanted me to be hospitalized for fluids during the prep. They ended up doing the cologuard test that you do at hoem and send a sample in the mail to a lab. No prep required. They do that for people that are NOT high risk, if you are high risk you have to do the scope.

I am not sure what the medication was that I took last November for my colonoscopy but I tolerated it fine ( while receiving home IV fluids during the prep ). I had to drink close to a gallon of fluid but it was a powder I had to put in my drink of choice ( gingerale ). I had to drink the first part the afternoon before and the other half starting at 4 am the morning of the procedure. I also had to take Bisacodyl capsules the afternoon before. I did well ( due to the IV fluids ) and tolerated the procedure ( first time without hospitalization ).

@KiminOrlando - I had several colonoscopies - an Outpatient one that ended up with an admission to OP ( outpatient ) stay due to autonomic seizures during the scoping, then another one that was done while being hospitalized for the prep and another one ( recently ) after receiving home infusions during the prep ( best experience ). Last year I was supposed to have one ( prior to having access to home infusions ) and my PCP told the GI that I had to be hospitalized for he prep. It ended up that I did the cologuard ( mail-in sample ) that year b/c the hospital had issues with an Outpatient stay for a prep. So - this year I had a colonoscopy with IV fluids during the prep at home and did well with both the prep and the procedure.

Sorry @Libby - isn't that discouraging? It sounds like you were doing good for a while and - BAM - right back to it!!! I can understand that though, b/c I've done things like that. But yeah - baths are not a good idea. I avoid all water except for showers and I dread them. Lie still, do exercises with your legs, drink, salt and put on some compression stockings if you have them, those tried and true things might help. Hope you feel better in the morning!!!!

@df3121 - I am sorry that you are experiencing all of these scary symptoms! That is a long time to be that sick!!! -- I would check into an autonomic specialist, you can start on the physician listing on this web site. Unfortunately physiians that specialize in autonomic disorders cannot be found in every state, so many patients have to travel out of state. The other concern is that many specialists have a long waiting time for appointments so we commonly have to see another doctor in the meantime. What I have done in the past is ask my PCP for referral to an autonomic specialist and in the mean time I have seen a local cardiologist. Well - several, b/c most do not know how to treat POTS. It is very important to have a good PCP or cardiologist that is willing to educate themselves and try different treatments or meds for your symptoms. My PCP ad I work well together and he addresses each symptom as it happens ( there is always SOMETHING wrong! ). Also researching your condition and trying all the usual things like hydration, salt and compression is helpful for a lot of people.

You should mention all of this to him - these are all issues that he can address.

For me when my adrenaline surges I get cold hands and feet, tachycardia, hypertension, tremors, yawning, I feel very cold and in the end I pass out or take a seizure ( not epileptic but rather due to constricted blood vessels cutting off the blood supply to the brain ).

@df3121 - for hyperadrenergic POTS I am on Escitalopram, Carvelidol, Diltiazem, Guanfacine, Ritalin and weekly IV infusions of 1 l LR over 8 hrs ( up to 3 l over 24 hrs as needed ).

I used to be on methyldopa as well, as well as several BB's, pyridostigmine, Midodrin and more. What helped me most was adding a calcium channel blocker ( I am on Diltiazem ). The combination of Carvelidol and Ditiazem seems to have improved my severe surges.

I agree with @jklass44 - having surges at any frequency needs to be brought up to the physician so he can adjust the meds if needed. I used to be quite unstable like that but since having found proper treatment my surges have improved and only show up when I am in a flare ( which - thank god - is rare anymore ).

The shakes can be from elevated norepinephrine levels which can cause tremors, anxiety, tachycardia, hypertension, cold hands and feet, seizures …. this is hyperadrenergic POTS. The levels are checked in a blood test lying down and then being upright for 30 minutes. They say anything over 600 is elevated.

I am happy to hear that you are doing better!!! I was a trained figure skater in my youth and certainly understand how much joy it brings - good for you to have an activity that is good for you, gets you exercising and brings you pleasure!!!