Pistol

@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!!!

@StayAtHomeMom - yes, I had Vit D checked recently, it's normal. I have been low in the past and have been on a loading dose several years ago and daily maintenance since. Also take Vit B12 shots and daily iron for low ferritin. I just never know why I get these joint pains and it comes and goes - does seem to be worse in fall and spring. Maybe it is the cold weather that is supposed to be coming …

Thank you @StayAtHomeMom - that is what I am going through: pains all the time but over the years all of the labs always were normal, except a slightly elevated ESR and I had a knee arthroscopy done years ago and they did not know what to make of it - there was too much synovial tissue in my knee but all was well anatomically, the Ortho said that this only happens if there is trauma or a ruptured meniscus. But there was nothing wrong with my knee - so they did not know what it was. Yet - there are times when my joints just hurt so bad!!! And when they don't - then I can tell just how bad it really was!!! Problem is - I have no idea what triggers these pains but have recently noticed that they occur when my POTS symptoms flare. So - I have NO IDEA!!!!

I started on the lower dose - 10 mg, and I am still on that dose. But it is very individually what SSRI/ SNRI or what dose of which agrees with you personally.

@p8d - thank you for the suggestion, I will ask him about this. I believe you also have hyper-POTS - do you experience ANY side effects of the hydroxychloroquine?

@CarolineEJ - would it not be easier on her to get her fluids IV? I do understand that current consensus is to avoid long-term IV fluid therapy for POTS due to the considerable risks that come with long term IV access ( blood clots, sepsis ). But in your daughters' case her quality of life is affected if she can not get out of bed to receive her fluids via tube. For me my energy returned once I received the fluids weekly and I am able to exercise more, be more active and can function more. This in turn improved my exercise tolerance, social life and just general well being, I no longer feel depressed. That makes me feel as though she could benefit from IV therapy b/c I do not have to lie in bed while receiving the fluids - I am attached to a pole but can still do things around the house. And once I am off the fluids I am a changed person!!! It also has greatly improved my anxiety b/c I have not been passing out or having seizures, so I do not have to try to constantly triage my activities out of fear to have an episode. ( If that makes sense ). --- I wish the best for your daughter and hope she will not need the NJ tube, it sounds terrible to have to ensure that long term!!!!!!

I am sorry @potsiebarbie that you feel so unwell. Yes - I know what it is like. When I was at my worst and had to stop working I was overwhelmed with the outlook of having to live with so many limitations yet still be so sick. I became depressed, partially due to the fatigue and exercise intolerance, the fact that I was housebound, the anxiety over taking seizures and syncope that I could not control and partially because - well, because I felt depressed. This was a downward spiral for me and I even became so bad that I considered suicide. This was a bad time and I immediately talked to my doctor and my closest friends about this and was evaluated ( my choice ) by a neuro-psychologist. She di a thorough, many hours long exam and told me that my depression was a result of the symptoms of my illness and gave me ideas as to what to do every day to get better. And my PCP started me on SSRI ( Lexapro ). I have been on that for many years and tolerate it well. … Today I am in much better place, I have accepted my limitations and found relief of many symptoms through medication and lifestyle changes but still am disabled. I guess what I am telling you is - don't be hard on yourself. What you are feeling is common and many of us feel - or have felt - that way. Yes - medication helps many but in my case it was talking about what was going on and allowing myself to be helpless and human and letting other people in on my misery. It is VERY important to have someone to talk - whether this is a doctor or friend or family or counselor. Sometimes when we get too wrapped up in our feelings we loose the ability to think straight and talking with others puts things into perspective. And it lets us see that we are not " crazy " or "unreasonable" - we are just human and there is only so much we can tolerate. But others can help us carry our loads. Be well!!!!!

Dear @MeganMN - I also can relate and have been in your shoes. I would definitely call the EP and tell him about your symptoms, he may want to see you earlier or advise you as to what to do. When I was in your exact situation ( better on BB but bradycardia when on it, bigeminy as well ) my cardiologist switched my BB ( I was on several ) and took me off Norvasc. I have hyper-POTS, so calcium channel blocker is needed for vasoconstriction and hypertension in my case. Once I started Coreg the tachycardia and bradycardia went away but I had to slowly increase from 3.125 mg to 25 mg. But even with the lower dose I found improvement and never was bradycardic again. --- I was a nurse as well and know what it is like to push through bad symptoms just to finish your shift. As @jklass44 mentioned - there comes a point when work ( especially 12 hour shifts ) are no longer doable, at least until you are stable on meds. In my case I worked for years with unstable POTS and made things much worse. Can you cut down hours or days until you feel better? When I was too sick to work my PCP gave me restrictions and my employer switched me to a desk job ( which I hated but could tolerate better ). Would that be something that might be possible for you until the monitor results are back and you have some answers and hopefully better treatment options? --- I wish you well and please call your EP or tell your PCP what is going on.

Hello - I have a question. There are several posts regarding joint pains but my question is: are the generalized joint pains that many of us experience caused by POTS or are they unrelated? I have noticed that when I am sick or have worse POTS symptoms I always also experience these joint pains - mostly knees, ankles, wrists, elbows. There is no swelling or redness and Range of motion is normal except that they hurt, constantly. I do not have RA or autoimmune disease that I know of but I do have arthritis in all of my joints, including the entire spine. Also - what I have noticed is that my BP tends to run low when the joint pains start ( since getting weekly IV fluids I have not experienced hypertension ) and I suffer from cold hands and feet. I take Turmeric with good results for the pain. But it does seem that this comes along with the fatigue, brain fog, PVC's, dizziness upon standing etc, so I was just thinking if anyone else has seen a relation between POTS and joint pains?? Any comments would be appreciated.

@dannyg - I am sorry about the findings - I am sure the wait time is unnerving and scary. But I would not think twice about the surgery - they have to remove it and test it in order to determine what type of growth it is. The fact that you had it a while could be good - the growth appears to be slow-rowing. --- Re surgery: I have hyperPOTS and NCS and had several surgeries over the years. As long as the anesthesia department is familiar with your history of POTS you should be OK. Once I had a hernia surgery and the anesthesiologist did a spinal lying down ( normally done while seated ) to avoid sudden drop in BP. I did great with that surgery. Another time I had an umbilical hernia repair under general anesthesia and did OK, although my BP dropped and they had to give me something to bring it back up. They also - for another procedure - gave me volume expanders ( IV fluids that expand the blood volume ) and I had no problems during that procedure. So - to make an already too long story short: make sure during the pre-op visit you lake them aware that you have POTS and need special attention during surgery and that it is ESSENTIAL for them to give you IV fluids before the surgery. This has in my case always been done and has been very imprortant for my peri-surgical stability. I wish you the best of luck and hope the surgery goes well!!!!! Please keep us posted!!!

Also - what has helped me a lot is walking close to a wall. When I used to work in a hospital I often could avoid a complete fall by walking close to the walls so when the faint came on I could lean on the wall and gently slide down rather than hitting the floor with a loud thump. Looks more elegant, too!!!!

@Colomom - ARRGGHHH!!! Tis makes me so mad b/c I also have been there. I cannot even IMAGINE having to deal with docs like that when it comes to my child. I have endured many ignorant docs but at least it was about me ( and I can handle that ). But if the same would happen to my child - I do not know how I would handle that. I am happy that you have found a "human" physician and wish the best for your son. Be well!!!!!!

I have to - unfortunately - say that Vanderbilt was a complete waste of time and money. In my case - NOOOO to Vanderbilt.

So - when will you open The Dysautonomia Restaurant? I will be there - well, if I have a good week. ( I guess a dysautonomia restaurant will not take reservations? )