In A Quandry

[bebe127]

Hope this finds everyone as symptom free as possible.

I have a question or two or three. I just feel like I'm in such a quandry. As most of you know I was diagnosed with "what is probably POTS" almost four years ago. I've never found out for sure (although tested positive during TTT), nor have I found out what type of POTS I have, if in fact I do have it. For these last few years I've been on the search through this site and many others like it as well as through blogs and the like.

I've researched Lupus, Fibro, Meneires, MCAD, POTS, HyperPOTS and many more that I can't even remember right now. In my research I often find that I have some of the symptoms (and I know that no one person has every symptom and all these syndromes present differently) and much of the time the symptoms that I do have don't seem to be the prominent ones for any one syndrome, if that makes any sense. For instance, with Lupus, I have many symptoms, but don't really have chronic pain. I mean I have fatigue and my body at times feels like I'm 80 instead of 43, but I usually chalk that up to getting older.

I guess what I'm asking is do any of you feel this way in your quest for answers? What do you do? I am currently working on a notebook that houses all my information in the hopes that when I do get to a dr. even if it's just my GP, we can possibly go over it. In the past the only tests my GP has ordered are regular bloodwork and some sonograms unrelated to POTS. Do I go in and just say...could you test me for Lupus, Fibro, MCAD, HyperPOTS, etc.,etc., oh and by the way throw in a test for the "crazies" while your at it?

I feel like I'm back at square one. Even though I am doing much better than I was four years ago, I don't know if that is due to the meds, just getting used to my "new normal" or a change in attitude toward my illness. Perhaps it's a combination. I just feel like there is more to the puzzle, but I don't know where to go or who to turn to.

I also always have that thought in the back of my mind that I don't want to start this whole process over again just to hear, you're just anxious, depressed, all tests have come back normal, "go live a normal life" (yes those were the exact words of the dx. EP! Maybe I should just leave well enough alone and be thankful. Oh...I just don't know anymore.

Sorry for the rambling. Thanks in advance for any thoughts on this.

Be well,

Bebe

[Joann]

Bebe,

I think you should make a list of things you want him to test for. Your doctor is there for you and you know what, if you don't push for it, it will never get done. It would be awful to find out you have something that could have been treated and you suffered all this time, because no one looked at it. And yes, I have some symptoms that fit one thing and others that fit others. I honestly have thought what is wrong with me, is different at different times. I have often wondered if there is something wrong in my neck that is causing all of this, I have thought angina, pheo, hernia, hyper pots and goodness knows what else. Who knows, maybe I have a couple of things wrong. I have often wished I had certain things, just so I would know.

And I think I have gotten somewhat better, but only because I am slowly seeing some triggers and patterns. I don't think what is wrong is better, just my avoidance of things. So sometimes I think we may need to take a breather from the search, but I think you have to get back up and keep trying. Especially if you have insurance, if you do, go for the tests. Even if it just eliminates things, it still helps you in your search. I will say this last bunch of tests have kicked my butt and my symptoms are back with a vengenance, kind of scaring me. But, if they help me figure this out, it was worth it. Hopefully, I will no more in the next few days (and hopefully symptoms will subside also).

Bebe, you seem very organized, bring a list of symptoms, a brief history of how it began and is currently. A list of doctors and tests you have had and a list of your questions and tests would like to talk about

[bebe127]

Thanks for the encouragement Joann!! Hoping you feel better real soon. You are right, I'd hate to keep going feeling poorly when someone out there might be able to help me somehow. I guess it's just the good ol' fear of the unknown that's the killer. I'm in the process of a blog post on my notebooking, and your suggestion of listing symptoms reminded me that I actually made a table listing them all in sections based on frequency (one of the positive things I guess to having so much time in bed and energy to only type!) thanks for the suggestions

Be well!!

[misstraci]

Bebe, I feel exactly as you do. It's been 3 years for me going strong with only a probable pots diagnosis after many things ruled out. I still believe there is an underlying condition causing the "pots" symptoms though, not just for me but for everyone. I'm sorry you still feel cruddy. I'd ask the doctor about the various tests. I hope your dr is caring and would give you the time of day. Mine would say that we've done a full workup, some people just live with certain things, they have to get used to it. BLAH, I've heard that too many times yet still feel like death. anyways, I'd just ask and hope for the best, hope he will do the tests for you. I've been feeling back at square one too. I'm thinking about going to Mayo or something. but even that feels like a last resort and what if no answers from them either?!

[looneymom]

I agree with the above answers. Ask for the test. The last time I took my son into our family doctor, he threw a fit about running some of the test. However, I had articles that backed up my theories, so he decided to run some of them, which was better than none. It's best if you can find a doctor who really wants to get to the bottom of the problem. Don't give up, there is a doctor that will be able to help you. I have fired several doctors because they said it was behavior and anxiety. Our cardioloigist has been the most helpful. He has several pots patients, but our son seems to be his worst. He suspects an underlying autoimmune problem that's causing POTS. If you suspect this type of problem, I would suggest you discuss this with your doctor. If he is not comfortable with running the test, then ask for a referral. I have ran into this problem with our family doctor. You are not crazy, stand your ground with your doctor! Or find another doctor that cares about your medical needs.

[bebe127]

Thanks looneymom!! Hope your son is well and props to you for being such a great caregiver/advocate for him

[Mydoggielovesme2]

Bebe, I went for years with a Pots" diagnosis. But it was not until going to Mayo that I found out I have Celiac disease. I really thought Pots was first, but now wondering if this may actually be part of the cause of pots. My point is, I never pushed for more answers. I had (and still have) so many varying symptoms. But once I put them on a list, and went to a great Dr, I started to get some answers. Sure I'm still sick, but getting the right tests, and getting some answers is soooooo reassuring. I have some direction to focus on now. I have areas to work on that will improve the quality of my every day life. So keep searching, keep asking for more tests. You are NOT crazy. You just need to find the right Dr that will help you with your journey.

[westernmass]

I feel the same way as you! I've had a lot of tests (and sort of suspect something lupus-like) but not much has come of it. Food intolerances (though some docs say that test is worthless), and elevated ANA (though Rheumy said that didn't matter, lol), gastritis ("but that could be from lots of things") and so on. Everything "normal" except I have POTS and "delayed OH".

I am lucky to have a wonderful GP, who will pretty much test for whatever I come up with... But is pretty much out of ideas himself, as am I. I started brining a long list of symptoms and ideas to my appts, which I was embarrassed about at first but is great! If we run out of time or it's a lot to cover, I leave him the notes and he'll get back to me. Don't be shy with your doctor! If he/she doesn't seem to care find someone else. I feel you on "not wanting to start all over" though. It's never ending it seems!

I also get you on not knowing if you are getting better, or just "dealing" better and making the best of it.

Anyway, be well, and good luck!

[dpeeps]

Hi BeBe127. I am curious when you say that you had a positive TTT, but not sure if it is POTS? I thought the TTT was the definitive test for POTs (?) The reason I ask is I am wondering if I have celiac disease primary with POTs secondary. I tested positive (extremely positive) during the TTT, but have never been tested for celiac disease. (Now this is embarrassing, but...) I have had chronic diarrhea for over a year!! No amount of fiber helps, I take Iron for anemia, which is suppose to make you constipated - not me!! Maybe I should just cut out gluten and see what happens. I heard it is a tough diet to follow though.

[Angela]

i just wrote a longish message and somehow it got messed up by my laptop. anyway, have you tried taking an h1 and an h2 AT THE SAME TIME every a.m. and p.m. 10 mg. of each is what i take every morning and night. i def think it helps me....the tingling sensation in my feet and hands is gone now. my neuro said mast cell is very hard to catch. cmy hr is lower, not sure if it is because of this tho. bp still messed up:{

[margiebee]

I was wondering about the positive tilt test thing as well. I mean the only test I have had in direct regards to POTS is the TTT and my doctor said that is diagnostic of POTS just not of what type it is, which is why I'll be having more testing. But I've also been told that its more of a "process of elimination", although I have had testing for ANA (which I've been told would cover autoimmune things), celiac, thyroid, liver, various heart scans etc and the TTT has been the only thing abnormal. So I suppose maybe that's why I've been told that, all the other options have been eliminated for me more or less.

I am pretty "textbook" for POTS as far as symptoms go, I don't really have anything that falls outside the range and I have pretty much everything that does. But I do have a tendency to distrust doctors and assume they are missing something so I try not to overthink it if I can.

[bebe127]

Thanks mydoggielovesme and Westernmass,

I haven't really been tested for anything else since getting sick. I am currently working on putting a notebook together to take to my dr. next week. When I first started seeing him, he just kinda concurred with the dx. EP and went with POTS. We've never discussed anything else like Lupus, Fibro, Mcad and the like. The only blood tests he has run are just the regular ones. He has never tested my NE levels which might or might not point me toward Hyper POTS. He's never even taken my bp lying, sitting, standing. One of the good things about this dr. is that he put me on a BB (although if I am hyper these might not be helping, from what I've read) and at least tried some things with me. Not like the dx dr. that just suggested I have POTS and that there was nothing I could do and told me to "go live a normal life". I haven't been back to him since. I guess I'm just so tired after waiting for hours in my GP's office and I'm so frazzled when I get in to see him that the only thing on my mind is that I just want to leave. He is a pretty good dr. though and he seems to listen. I am going to hopefully aquire some assertiveness soon so I can ask for different tests.

Thanks again and be well

[bebe127]

dpeeps and Margibee,

Thanks for your responses and your questions. I'll try to make this short. You can feel free to read the really long version on my blog below. Not trying to give a plug, it's just a long story and it includes most of my dr. visits and symptoms and such.

Here goes:

I originally went to see a dr. for a raised hr. It would get up to 120 while just making the bed and I had some chest pain/discomfort and a weird feeling in my left arm. I also had some bp readings that were on the high side. I saw a cardiologist. She put me on Norvasc (10mg) and Niacin because she said I had high bp and high cholesterol. She scheduled me for a treadmill stress test. The results of the stress test were: Exercise capacity: "The patient exercised for 8 min. 6 sec. of a Bruce Protocol achieving a work level of 10.0 METS consistent with above average exercise capacity. Hemodynamic Response: "The patient's resting HR was 81 bpm and BP was 123/84 mmHg. By peak exercise, the HR rose to 171 bpm and the BP rose to 176/95 mmHg. No symptoms, No arrhythmias, 100% PMHR achieved. So...end result, I have a perfectly normal heart function (great news) and have above average exercise tolerance. I have to say that at the time all this was going on, I didn't have all the symptoms I have now and I was exercising regularly, riding my bike 9 miles a day.

I had been taking the meds that she prescribed for about a week when I had my first episode while driving. Next morning same episode happened and I found myself in the ER where I stayed over night. Saw the dx. EP there and both he and the attending dr. said that I had neither high bp nor high cholesterol and to stop taking the meds that the cardiologist gave me. They both told me that a side effect of the meds was arrythmias. The EP asked me if I had ever fainted, I told him one time while I was a teenager (I was at this time 39). He scheduled me for an event monitor.

The EP wrote in his notes that I was "experiencing palpitations associated with racing heartbeat, dizziness, lightheadedness, sycope (all true except the sycope, why he wrote that, I don't know). She feels jittery with tingling all over her arms and legs." My potassium was 3.2 (on the low end from what I've read) and everything else was unremarkable. After having the event monitor for 21 days, his first assessment was that I had SVT. He also put in the report that I had significant bradycardia. He wrote that my SVT has morphology which resembles a bunch of long medical terms. He also put the "her heart rhythm abnormalities and her symptoms might also be related to other conditions such as vasovagal syncope associated with bradycardia and tachycardia."

Fast forward to the TTT. Yes, the TTT is the only test for determining POTS that I know of. Mind you, I was not on any medication at the time and it had been about 2 months since my initial episode. I'll give you the short of it:

Results:

Baseline BP 117/76 HR 60

Raised TT to 80 degrees After three minutes my vitals were. BP 123/98 HR 95

2nd time: After three min. BP 139/94 HR 147 and into the 150's he did a few things like pressing on my carotid and having me bear down to lower my HR, didn't work.

3rd time: After three min. BP stayed at the range of systolic of 140-145 and HR rising to 160 range. He injected me with adenosine to stop an arrhythmia (if I had one) made things worse.

In his notes he put: "TTT results were probably consistent with POTS."

He then told my husband and me after giving me some printouts from Dinet.org that I probably have POTS. He told me, "Drink more water, eat more salt, and go live a normal life." He told me in a later follow-up visit that "many people live normal lives with this, I don't know why you're experiencing all these symptoms."He told me the only medication for POTS was Florinef but that he wouldn't put me on that because my bp raised during the test and by putting me on that med it could cause hypertension. So there I was with a "probably" dx and relatively no explanation. He told me that POTS is rare and that not many dr.s treat it and he wasn't one nor did he know of any that did treat it. He referred me to a Neuro. I went and after a few preliminary, what I call "sobriety tests" in the exam room, told me that my problem was cardiologic not neurologic and referred me back to original EP.

So that's the short of it, well, sort of. Maybe I'm just stuck on the whole "probably" thing. I still have many symptoms and the more I read, the more I question. Still no one has told me what type of POTS I have, if in fact I have it. Not even the dx. dr. told me there were types. I only learned that after doing research on my own. Don't get me wrong, I am doing better that I was four years ago and I have good days and bad, but I just can't stop this nagging feeling that something else might be wrong, or that there is an underlying condition that needs to be looked at. Thus, my quandry.

Hope this answers some of your questions. Sorry it was so long.

Be well,

Bebe

[bebe127]

Angela,

Thanks for your response. By the H1 and H2, do you mean Zantac and Zyrtec? I've often thought of just starting those on my own, but need to check with my dr. as to any drug interactions.

Thanks again,

Bebe

[Hope]

Hi BeBe127. I am curious when you say that you had a positive TTT, but not sure if it is POTS? I thought the TTT was the definitive test for POTs (?) The reason I ask is I am wondering if I have celiac disease primary with POTs secondary. I tested positive (extremely positive) during the TTT, but have never been tested for celiac disease. (Now this is embarrassing, but...) I have had chronic diarrhea for over a year!! No amount of fiber helps, I take Iron for anemia, which is suppose to make you constipated - not me!! Maybe I should just cut out gluten and see what happens. I heard it is a tough diet to follow though.

Gluten-free is really not that hard once you get the hang of it. I have never been tested for Celiac because I haven't been well enough to do the scope, but I attribute my digestive tract going back to normal to my Gluten-free and low dairy diet. Also when I was in that state of constant diarrhea, the iron supplements just added to it. Now that my digestive tract is good, I can tolerate iron in my vitamin more often, but not daily yet.

[bebe127]

I also have had GI issues until just recently. The only difference with me is that I started drinking a Nutribullet smoothie about 4-5 times a week in the am for about the last two weeks. They usually contain but aren't limited to...spinich, shredded carrots, apple, banana, blueberries (or other types) a scoop of yogurt and some coconut milk. I was just realizing this am that I haven't had diarrhea and/or loose stool (sorry for the tmi) for about a week or so. Can only figure that the smoothies have made the difference as this has been the only change. I've never tested for celiac, but have heard good things about gluten-free diets.

[Hope]

I'm with Joann, keep trying until you get answers. We are our own best advocates. After 2 years, I am finally not letting what doctors say to me dissuade me from getting answers. I just figure a person only knows what they know from either education or experience (including doctors), and they are only going to be as compassionate as their personality allows so if I don't agree or like what I hear or what the plan is, I move on. Other people have other answers and ideas and as long as I have good insurance I will keep forging ahead until I'm satisfied that I know what is going on with me. This is of course as my strength and energy allow Especially in the case of my cardiologist. I went from one guy basically telling me I wasn't doing enough to get better (my fault, really?), to another cardiologist that my neurologist sent me to that knows Dr. Grubb and follows all his research, and that cardiologist said I am making great progress and that he has patients that just don't get better. Support from a doctor that knows what they are doing is a wonderful thing! I also ditched my primary that kept telling me I needed to "see the psychiatrist for better drugs" because I was just having anxiety and I need to get up and walk! When I got the tilt table test the gals there told me I really needed a new primary that would listen to me. The results of course went to my previous primary and he called me and actually recognized that I had POTS but was still on the band wagon for Zoloft which I tried a few before that and didn't tolerate well. That was the last time I talked to him and I now have a WONDERFUL primary who actually has at least one other POTS patient. Don't get me wrong, I am not against psychiatric drugs if they help, but my situation does not call for it. Keep forging ahead!

[bebe127]

Thanks Hope!!

I agree with you and Joann. I'm in the process of compiling a notebook with all my info that I will take into the dr. next week when I go in for a physical. If it is not ready by then, I'll just take in my list of symptoms and some articles and questions I have regarding HyperPOTS and MCAD. We'll see what happens. Here's to hoping I can get some assertiveness before next week I really do like my GP and he treats about 5 other patients with POTS, so I guess I really should be grateful.

I don't like psychiatric drugs either, but to tell the truth, I think that Xanax is something that I truly couldn't live without.

I've been drinking my Nutribullet smoothies the last two weeks and walking with my son a few times a week as well, and I tell you what, I'm feeling so much better! Don't know if it is that or I'm just having a "good week". I had a freakout this past weekend, but that has passed and today I feel really good. Go figure. It's like my body is bipolar!! One day, fine, next day FREAKOUT!! I just trying to go with the flow. Too bad my family has to deal with my craziness as well. Oh, well, I'll take good when I can get it.

Hopefully will find some info out at next appt.

Thanks again and be well,

Bebe

[dpeeps]

Hi BeBe127. I am curious when you say that you had a positive TTT, but not sure if it is POTS? I thought the TTT was the definitive test for POTs (?) The reason I ask is I am wondering if I have celiac disease primary with POTs secondary. I tested positive (extremely positive) during the TTT, but have never been tested for celiac disease. (Now this is embarrassing, but...) I have had chronic diarrhea for over a year!! No amount of fiber helps, I take Iron for anemia, which is suppose to make you constipated - not me!! Maybe I should just cut out gluten and see what happens. I heard it is a tough diet to follow though.

Gluten-free is really not that hard once you get the hang of it. I have never been tested for Celiac because I haven't been well enough to do the scope, but I attribute my digestive tract going back to normal to my Gluten-free and low dairy diet. Also when I was in that state of constant diarrhea, the iron supplements just added to it. Now that my digestive tract is good, I can tolerate iron in my vitamin more often, but not daily yet.

Thanks Hope for the info. I am wondering if it is gluten sensitivity - can this be something that develops over time? I mean, prior to POTS I never had any issues with diarrhea. I guess the best thing to do is try it to see if it helps. I bought some gluten-free waffles last week to eat for breakfast because I like to have something startchy texture when I wake up. I thought to myself, "Hmmm.... they taste like mashed potatoes!!! " Then I looked at the ingredients and it said "potato flour" hehehe no wonder. I read the instructions and started toasting them a little longer until they were crunchy. Once I got used to them, they started tasting great!

[dpeeps]

Bebe - that is interesting. My heartrate increase was not as dramatic as yours, yet my cardio told me "you definitely have POTS" He then alluded that there was other stuff he could do (injection?) but that it was not necessary. I remember his exact words "we could go further with the testing, but there really is no need to" My heartrate while lying flat was in the low 90's and it rose to 148 within less than a minute upon tilt. I felt dizzy, light-headed and nauseous, but never passed out.

Interesting that my cardio was so sure, while yours only said "probably" - even though your bpm increase was greater mine.

[Lel]

I second Mydoggielovesme's advice about searching for the right doctor and also knowing that you aren't crazy! I bet almost all of us have wondered at one time or another if we are crazy. I know I sure did! (and sometimes still do)

Also, if you're looking into autoimmune diseases, I recommend getting a referral for a rheumatologist. The tests they run for autoimmune diseases don't provide concrete answers. For example, positive results are indicative of lupus, but people with negative results can still have the disease.

For me, my rheumatologist has helped connect the dots to my list of symptoms better than my other doctors. In fact my first cardiologist laughed when he heard my rheumy thought I had POTS. My rheumy insisted I see another cardiologist who specializes in the ANS, and thankfully she did, because I tested positive on the TTT. Rheumies are use to dealing with weird systemic things. It might help to have another doctor's viewpoint. I would recommend giving it a shot.

And a gold star for keeping such organized lists! : )

[bebe127]

Thanks for the responses!

My next line of defense (I hope) is to go in for my physical next week with my GP. He's going to order labs and it is my hope that I can convince him to order a variety of tests (not too many though, just the ones I'm concerned with now). I would like to firstly know what type of POTS I have. I am going to go over my TTT and discuss the whole "probably" part with him. While I had "remakable" results from my TTT, my BP increased, which from what I've read can happen with HyperPOTS. I do not faint, nor do I get lightheaded often, I don't have blood pooling, or a host of other symptoms common to POTS, could be the meds., though not sure. I do have tachycardia and mostly just feel yucky much of the time. I'd like to be tested for HyperPOTS in which case I'm assuming he'll have to check my NE levels. Also, I'd like to ask for an ANA test (Antinuclear Antibody) since I've read that this test can detect autoimmune disorders, but I realize there is a potential for a false-positive and of course like you said, Lel it can come back negative even though I might have something. I also want to be tested for MCAD, but don't know if this is asking too much. I think at this point, I just want to know if I have HyperPOTS or more specifically, what type of POTS I have, if in fact I have POTS (which if I do, my meds might need to be changed) and/or if I have any autoimmune issues that could be contributing to my state of health.

I've been going through this for almost four years now and I've never had any of the above tests done. No dr. has even suggested that there are different types of POTS nor have they suggested finding out what type I have. Unfortunately, my daughter is beginning to exhibit some symtoms as well. She has congenital heart conditions already and her regular visit to her Cardio is in two weeks. I'm going to discuss it all with her.

My fall back plan, if my GP can't help me is to go see a new EP that apparently knows about dysautonomia. I was referred by a friend who's teen daughter was diagnosed by him not too long ago. We might have to see him anyway for my daughter, we'll see.

Thanks again

Be well.