Pistol

This just about sums it up!!!!!

Dear @Julyrose - yes, most people that are in a POTS flare are not dehydrated but the IV fluids help for other reasons, one of them being that the extra volume "fills up" the blood vessels and that creates a more stable circulatory system. I t also helps to improve electrolytes and fluid balance in the body. Are you on any medications? Please do consider being seen - I also have been alone with my then 4 year old in a bad flare and it was scary. I ended up asking a friend for a ride and took my daughter to the ER with me to get IV fluids. After that I was well enough to make it. Best of luck!!!!

@Derek1987 - to answer your question: yes. I usually am out cold when I faint unless I respond to the early warning signs and lie down before it happens. In that case I am conscious but cannot move and sometimes loose my hearing for a few seconds. This is called presyncope, in other words the state right before the blood loss to your brain shuts off completely. That is a common problem in POTS but be aware that bed rest makes everything worse b/c you decondition and the body looses the ability to adjust to being upright. So - if you get up you faint and if you stay in bed your fainting will be worse once you get up. So here is what has helped me in the past: exercise in bed, get up several times an hour and stand leaning against a wall for a few seconds, increasing the time standing gradually each time. However - in my case once I got to the point where you are at right now my PCP would put me in the hospital or send me to the ER for IV fluids ( even without the DX of POTS IV fluids are a common way to treat syncope and presyncope ). My specialist has given me several times a prescription to get weekly IV fluids at the local hospital infusion center for one month at a time for those times when I am non-functioning. You might ask your PCP for this to see if it works for you as an emergency treatment.

Dear @Derek1987 - after years of having to be frequently hospitalized for IV fluids when I was in a POTS flare I now have a port and get IV fluids at home weekly. I am greatly improved with NO syncopal episodes in over 4 months ( my previous record wax shy of 11 weeks ). However - current consensus is IV fluids for POTS only to be given in emergency situations or on a short-term basis. The risk of repeated IV access peripherally or long-term access as in a PICC line or port ( blood clots, infection, phlebitis ) has to be carefully considered by the physician. So - methods such as increased fluid and salt intake, compression hose, exercise, lifestyle changes and medication are usually tried first and IV fluids only if nothing else helps. It took years of displaying continuous improvement following IV fluids and no improvement from other avenues in order for me to be approved for long-term IV fluid therapy.

Hi @Derek1987 - I respond extremely well to IV fluids given over 8 hrs but I do drink Gatorade inbetween - it is high in sodium and potassium. Other drinks that help me are salty broth and ginger ale with added salt ( tastes better than you think and the sugar/salt mix in addition to the GI friendly ginger are good for my POTS symptoms.

When my POTSX first started the halter monitors ( many of them ) showed sinus tachycardia up to 180's and PVC's. So I had a stress test and two TTT's. I subsequently saw 5 cardiologists ( 2 of them were EP's) but no one ever suggested an EP study ( I would have refused it anyway ). I understand that they want to rule out certain arrhythmias first but I would do a monitor first. Not every tachycardia requires an EP study but many EP's feel that they have to order certain tests as part of their protocol. Some docs have been sued for neglect by NOT ordering certain tests so I believe that in some cases they are just covering the bases to show that they did something to treat you. In the perfect world it would be advisable to get every test there is to get to the bottom of things but then again - POTS is not that clear cut. Weigh your options and decide what you feel is best for you .

@MeganMNI fired 5 cardiologists and stuck with my PCP who always has my best interest in mind. So much so that I begged him for years to have a port for home infusions and he did not want me to because he was afraid I would suffer from blood clots or sepsis from the port. Only when my - also very good - local cardiologist agreed to the port AND there were several times when ER docs and hospitalists refused to give me the IV fluids he recommended did he finally agree to it. He went out on a limb for me and that was the best thing he could have done for me since today I am stabilized due to the weekly infusions. So - yes, doctors follow guidelines but the good ones will listen to YOU and not the guidelines. --- I have also noticed that some docs do more talking then listening - watch out for those. When I see my docs I do the talking first and then they get their turn. How else will they know what is going on? So - pay attention to their ability to listen to your story and do not just respond to a list of symptoms they address stating current rules --- I have noted that some doctors will concentrate on ONE symptom that they know how to treat just to get you out of the office but disregard the many other, more vague symptoms we mention that they do not know what to do with.

I have been in the ER several times each year for POTS complications. Whenever the ER doc asked if I had a headache and I said yes they ordered a CT of the head. FOR A HEADACHE!!!! I no longer mention the headache and - of course - have refused the CT scans. However - there were times when the CT scan was justified: abdominal pains, suspected PE, head trauma from falls … in all these cases the CT scans needed to be done. So - weigh the benefit vs the risk each time.

I have POTS as well as GI issues including bloating - I personally think it is related to the POTS in my case. Try Fennel seed - it really helps with the bloating if you chew the seeds very good.

Sorry @MeganMN - whenever this same scenario happened to me I went back to my PCP and had him take care of it. In the end the PCP is the one who cannot turn you away - hope you have a good one?

@MeganMN - my mother is 87 years old. When she was in her late fourties she began passing out and having fluctuating blood pressures. Back then no one knew about POTS. She was told she had psychological problems etc. The cardiologist put her on a BB and she did not at all respond to it, as well as develop crushing fatigue. She asked to cut the pill in quarters in the morning and half in the pm - the cardiologist told her that is not the way BB's work and that she was noncompliant if she attempted this. She fired him, had her family doctor prescribe her meds and she cut them into whatever pieces she darn well pleased - and lived happily ever after. Today she is - of course - diagnosed with POTS and is well maintained on her meds. So - do what YOU know is right but within reason. It is right what @jklass44 said - BB's can cause problems in the first weeks to months until your body adjusts - but some people also get very ill on them. They are very strong meds and are not for everyone. Listen to your body and take care of it!!!!!

What meds are you on? You may want to discuss this with your doctor - sometimes switching meds to twice a day or taking them in the evening vs am can help.

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.