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~Naomi~

Pots Diagnosis

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Does anyone else feel like "POTS" doesn't really answer the question? I am happy to at least have some diagnosis after years of symptoms, lots of Doctors and tests and no answers...but it's not quite enough. I feel like I have to get to the root cause. What underlies this POTS diagnosis, what's causing it, where specifically IS the dysfunction? How can a Doctor properly treat you when they don't really know what is causing this? Sometimes I wonder if it is not POTS, but something else that can cause POTS-like symptoms. Anyone else on the computer researching, trying to unravel the mystery of your health problem? Anyone else going to Doctors and asking for weird tests, looking at obscure possible diagnoses? Which I feel really dumb doing, but I haven't found a Doctor to take me on and commit to figuring this out with me... so I feel like I have no choice but to try to figure this out on my own. Just wondering if others here feel satisfied with "POTS" or "Dysautonomia" and can stop there or does it leave you wanting more?

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Guest tearose

I have stopped looking for the "one clear cause" and focused on living life as best as possible with the least amount of side effects from available treatment plans.

It is a personal decision and I have no regrets.

It has helped me to focus on ability and life and not on illness and disability.

It is a personal and sometimes financial decision. This does not mean I do not keep looking for answers. I just now need to spare my bruised and worn body from any more invasive testing.

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I actually think a lot of people here have found their root cause, whether its MCAD or EDS.

Me personally, I believe 99 pecent I have an autoimmune disorder behind all this. I have way more symtpoms than just the "POTS" ones, and they all point to that. Still waiting to get into a rhemetologist after my ANA was positive.

Dont give up looking, but know when to relax. I have had this for around 4 years and just begun looking for more answers. I just was not in the mood for it before i guess LOL. Also when my symptoms were good, i tend to not really care about looking further either LOL

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I'm glad you asked this - I've been wondering the same kind of thing but couldn't articulate it. I don't have POTS; I have neurally mediated hypotension. My symptoms are quite different than what many people here describe: my heart rate almost never goes above 85, but I am dizzy and shaking with any effort at all. I was thrilled to get my NMH diagnosis last fall- thought I was FINALLY on the road to some recovery. I've been taking midodrine with very mixed results. It keeps my BP up to a reasonable 95/65 (on average) -- but I still feel utterly wretched much of the time.

I feel the same way - that there is something underlying/causing the NMH, and that's why the midodrine has little effect on how I feel overall. (There are times when my BP is as high as 108/70, and I feel at my worst.) I haven't had endless tests simply because they haven't been available to me on the NHS, but I don't know that I would find anything out anyways. So yes, I spend ages trying to learn all I can in the hope that I will eventually find SOMETHING that will give me some improvement.

I feel like my life is utterly consumed by babysitting this body that I am in - did I eat right? did I get enough sleep? when can I have my nap? better have more salt/fluids, and so on -- and despite all the effort I still can barely manage a trip to the grocery store.

I'm sorry you feel this way too -- but maybe through forums like this, where we share information and advice, we'll finally get to the bottom of it.

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I am one of the people fighting to get as far with this as I can, but it's not easy. However I do have the advantage that my medical appointments are paid for by universal health insurance (but not all the travel). The disadvantage is that for a variety of reasons, many of the top experts in these fields are in the US, and I have to either see them or wait for info to trickle down the research chain. I need to get better at balance my quest with looking after myself, but in a way these two things also inextricably linked.

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When I got really sick, I was consumed with finding the cause for my illness. Getting the POTS diagnosis was helpful because it did clearly describe most of my symptoms. I'm thankful that I was able to go to Mayo where they did test me for most possible underlying illnesses. I do hold out some hope that I'll realize the exact cause of my illness some day whether it's because I get so much worse that the illness becomes much more apparent, or whether the POTS researchers come to realize another cause for POTS that fits me perfectly. I also have hope that some day I will get better (but it's been 5 years so far since I first got sick).

However, I'm mostly working to find a treatment plan that best manages my symptoms as well as accepting my current level of function and being content. I find that it's easiest to do this when I try to focus on meeting the needs of my family and others.

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Naomi - know how you feel. I feel similar. I'm happy to have a diagnosis, but not totally satisfied with the answer, or lack there of. However, I am no longer researching online like I did before. I've been heading down the naturopathic route instead, since traditional medicine is lacking. I hope you are able to find either some answers or some satisfaction somewhere.

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Hi...

When i got my diagnose back in 98 I ust consentrated on being the heatlyest i could be. And i was in way better shape than now, and still abel to exersis alot. I did gett my diagnose in usa, and back home i had a hard time finding a doc willing to take me as a patient. I finaly found one, he is no expert and only intrested in the bloodpressure fainting part of my illnes...

Since i was 21 at diagnose, and had a worsening of sytoms in my teens i sort of hoped that i would be of the kind that would grow out of it... I whent on lots of meds trying to stop the fainting, the fainting was then the thing others could see , but i had lots of other stuff at that time also...

I tryed a lot af alternativ treatment too, alot... And i keept exersising the best a could, but it wasnt long before it ust got harder and harder..

And then the years whent on, and i didnt gett better. i got worse, even on better meds. And i got other symtoms stronger and stronger.. A part of me whanted to hold on to the idee that this i would grow out of... But a part of me knew that i have somethimg that causes my pots...

So to the extent my poor foggy brain and weak body lett me i tryed to seek solutions. Not often and not much, but still alilte. And i tryed to seek te help of docs again.

I even got my self tested for mastocytosis, bone marrow test. It came negative. But my allergy pills does help me, and no allergys. Last year when i starded the allergy pills that was a turn for me. In many ways the allergy pills is a greater help than all other meds i have tryed..

My cardio suspect that there might be a nero sort of thing at the base. But the nero i was referd too (since she was so opend minded) told me that i belongd whit cardio docs.. So its so sweet that my papers says i had a nero work up.. She might have had x-ray vison, and she did read my medical history... But a nero work up it wasnt...

I had a twist in things over night some weeks back, and more than ever i know there is somthing causing my pots... I am going to the doc tomaoorw.. And a stupid part of me still hopes that this time, this time they will try to figure out why and whats happening...

I gess hope is important.. But i know how bad i always feel after, each time ust a lilte more deprived of hope... And each time a nother entring in my medical history... And more often than not, more wrongs in the strory than rights....

There are many reasons for pots, from viral to eds... I would like to find mine, i am tierd of fighting gosths.....

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I was just diagnosed in January of this year, yet I still continue to watch every episode I can of Mystery Diagnosis etc. Hoping I might be able to find some sort of clue. But I guess it is just because I can't understand why my quality of life has diminished and there is no 'fix it' pill or solution. Don't get me wrong, I completely understand that sometimes a person is diagnosed with a disease and there isn't an end in sight, but at least doctors can usually take the patient from A to Z on the reasoning or the problem/disease at hand.

With me, they think it has been an underlying problem my whole life, but then why did my symptoms get progressively worse in the last 3&1/2 years?? Logically there must have been a trigger or an underlying cause.

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For anyone interested, there is a lot of good info about MCAD/S and POTS on the Mastocytosis Society of Canada website. You don't have to be Canadian or pay to join, it's just meant to support and inform people. I find it to be a really good resource and place to find articles.

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Naomi, I feel this way exactly. I was just diagnosed at the end of January and have been doing overwhelming amounts of reading about anything that seems relevant to POTS since November or December, when I suspected that's what I had. My husband often has to remind me to take it easy on the research, because I get compulsive about it (like I'm gonna solve my problem in several hours on my laptop!).

I just tried fludrocortisone as my first med last month and saw no results. I've been salt and water loading, wearing compression hose, and sleeping with the head of the bed elevated for a little over two months now and have seen no improvements.

Last week, I requested an appt at Mayo in MN. I'm hopeful that testing can reveal information about where the problems may lie. It's just so frustrating not knowing. At the same time, I've read plenty of stories of people who've been to Mayo and are stuck in the same treatment situation - trial and error with the commonly prescribed drugs - so, I'm not expecting life changing results.

At times, I have 'aha' moments when I learn a new bit of info that helps me understand POTS. But, there's always the problem of POTS being a syndrome - a collection of symptoms. The way I'm thinking about it these days is that, due to POTS being a syndrome, everyone's experience is bound to be different. That's one of the reasons I decided to go ahead with Mayo - testing my own body, rather than extrapolating from participants in research, should yield the most valuable data (for me).

This seems really rambling to me. The brain fog is heavy right now. Ugh.

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Naomi you are speaking my language.

I've been tackling this for about 7 years now and I still have not found my cure. I don't know if there is a cure, but that has not stopped me from trying a million different things. I've ruled out a lot of more serious problems, have tried hormone replacement, vitamin replacement and for now that leaves me with heavy metal toxicity. I know I am in the very least, lead and mercury toxic and that is what I am working on right now. It is not easy. It is not a quick road and most people who chelate don't really do it long enough or get into the trap of using natural chelators which I think work very very poorly. I am constantly questioning everything and I am better for this. I don't suffer from a lot of the symptoms others have here because I have done a lot to help myself outside of just taking rx pills. I feel pretty confident that most mainstream doctors really have no idea what POTS is nor do they have any ideas on how to treat it. I completely agree with you that it is simply a SYMPTOM of a larger issue. Everyone has breakthrough POTS symptoms regardless of the number of rx they take... What they are pushing is just NOT working.

I also wanted to get more and more tests, but I realize no matter what those tests say the doctors won't have answer for you. In fact I believe they will actually get you to believe there is nothing that can be done. Maybe there is not, but I have to at least keep trying or there is little reason to keep going at times. That's just my opinion.

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I so relate to this right now! I have been sick for just over three years, but my overall health has declined dramatically in the last 6 months to a year. In that time I have acquired one new diagnosis, (Celiac Disease) but still have issues that don't fit my previous dx's. There are times where I just want to curl up and cry defeat, and accept that the hope of a "normal" life for me is just gone. At this point I would happily settle for just stabilizing, where I could work around my illness a bit. I am following up with Dr. Grubb next week, and trying to gather up all the data I can to give him the most complete picture possible, in hopes of a new direction. Good luck with your own search, I'll be praying for you as I fight my way through mine!

Sandy

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Sorry - forgot this forum includes other forms of dysautonomia. POTS just seems to be the most popular diagnosis around here! But really the question still applies to any form of dysautonomia with no clear cause. Well, I'm glad I am not alone in my (obsessive?) quest for answers. I really feel like I have no choice. I wake up everyday and face the same set of horrifying symptoms the moment I open my eyes. I lay there like 'Oh God, I don't want to get up and deal with this'... but with two small children to care for, I HAVE to get up and deal with it. Frankly my life stinks -- I am kind of just getting through it when what I want is to ENJOY it. I feel like -if I don't figure this out- another 14 years (just realized today is has been 14 years) is going to pass me by. Can this really be it? Stuck like this forever? I haven't come to accept that yet. And I fear if I ever do come to accept that as reality, it will be the saddest day of my life. So for now I will keep looking. Which by the way is really hard to do with brain fog, cognitive problems, eye focusing problems, dizziness and NO medical background! I wish I could find ONE Doctor to look at everything - I want a real life Dr. House. Boo-- sorry to be such a whiny downer. It's just getting to me lately.

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Naomi -

Again, I'm really sorry you feel this way, but I have found your post helpful, so your being a "whiny downer" has helped someone! :)

It's just a relief to me to feel that someone can relate: I am so familiar with the dreaded "I just can't do this again" feeling when I wake up. (And I don't even have kids; am just struggling to meet my own needs.) I guess your post just makes me realize that I'm not alone in all this; again, I'm just so sorry that you're going through it too.

I really hope you can find something out that helps you. Don't feel bad about having a rant. On a more positive note, I think this is the right place to find something, anything that helps.

all the best.

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Hello, I researched the best doctors for each field in my area and I saw them all. Rheumatology, Immunology/Allergy, Oncology/Hematology, Cardiology, Electrophysiology, neurology, etc. One after one, I gathered a medical book from each doctor with their notes and labs and took all of that info to the Mayo Clinic. That was really helpful for me and the doctors to have all of their information plus the labwork I have had done. I looked up the causes of POTS/dysautonomia and pursued it with all the doctors within their specialty. I feel like I'm pretty close to having answers. Most importantly, I pray that I get better and I have faith that I will. And at this point, I am getting better and I'm thankful for that!

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No, having a POTS diagnosis doen’t cut it for me!! That’s like telling me I have a fever—it is quantifiable evidence of something, but it didn’t tell me the source of the problem.

I am obsessed with putting all of my health clues together. I am like most, about 5 years into this. Normal for the first 45 years.

POTS doesn’t tell me what caused my body to behave like this. I have been trying to take into consideration my history of unseemingly related health issues from my past. I had gut issues before anything, and then the fatigue set in. Ohhh, if I could only go back to the days when I was complaining about the fatigue! At least I had a life and was able to go do anything I cared to do.

The brain fog is getting really bad here in my 5th year, and really making it hard for me to remember things that I research. I have gotten to where I have to print out anything pertinent, just because I can’t rely on memory to make my connections. And, I am researching other body systems that might cause lightheadedness. I don’t even look up POTS or dysautonomia anymore.

I have been trying, since last year, to think outside of the box. And when I make odd posts here, it is all directed at us that are not EDS. I know there are others like me that just, out of the blue, got POTSed(hey, I created a new word!). I am finding out soooo much that needs to be looked at by people with PhDs in biochemistry, etc., that it is overwhelming. I wish I could just go get my advanced degree so I could address these issues, but I have a memory problem! So, there goes that.

It is my life mission now to figure this out. My kids are grown and I have all day to myself. I feel like no one will give this health problem as much thought as I will. At least I can make physiological connections and then ask someone with the degree. I have ordered my own labs when I have been curious about something.

All I know is you can’t fix the WHAT until you know the WHY.

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Count me in! I'm totally obsessive about finding out what's causing my POTS. And when I talk to most Drs about it now, I don't even refer to it as POTS anymore because that doesn't begin to cover all of what's going on in my body - I refer to it as a broader "autonomic dysfunction" - which takes it out of what many Drs seem to see as a purely cardiology-related dx. I am definitely not EDS, and doubtful MCAD. So what is it? My Drs were at least proactive enough to do the insulin tolerance test which revealed hypopituitary (central adrenal insufficiency & adult growth hormone deficiency) but they also say this is not a cause - that whatever mechanism in me is causing POTS is likely also making that happen. Ugh! Frustrating.

I do believe that all of us together will figure this out... no one will ever care about this as much as we who have to deal with it 24/7. I've had a slow 10 year decline & was dx'd finally 2 yrs ago, and only seem to be getting worse despite doing everything the Drs tell me to do.

Seems like the best thing we can do is keep each other's spirits high as we plow through (and I mean that literally - feels like I'm pushing a heavy one with the fatigue! Lol).

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Way to go, all of you!! I am recently diagnosed and I too am convinced that there is an underlying cause, condition, something that just doesn't add up!! Appreciate your Posts and honesty!!! Hope we ALL feel better ;)

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I have had POTS for the past 18 months. I have been determined to find the cause myself. Because I have good insurance, I have persued onward to different specialist with a list of my symptoms. So far I don't have MS, a brain tumor or Renal Artery Stenosis. My next visit will be my Endocrinologist. I was dx with Menopause at age 44 along with Osteoporosis. I am now 48. I have an abnormal AgG titer which is high and a high ANA titer as well. After the Endo, on to the Rheumotolgist. There is something causing this, you just don't wake up one morning with POTS as I did with no explaination.

((hugs)) Dixie

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This is a good thread!!

My daughter was diagnosed with POTS and gastroparisis in 1996. WHY? a 12 hour virus "activated" it. WHY??? did she have it all along? did the virus just activate it??

then came along EDS. ?? 50% of people with EDS/hypermobility get EDS. She obviously had EDS all her life, we remember the way her joints over extended and thought it was just "weird" That was just Ana!!

Then came CIPO. All are intertwined! one "could" lead to another. Maybe not! All is somehow linked. Will we ever know??

We have been looking and looking, but haven't found that "link". But as we all know, with chronic illness, especially invisible ones, we may never get that answer we all so desperately need!!

For the first few years all I could dwell on is "she has a rare, invisible illness with no treatment and no cure". REALLY???? And then came more... In this era?? thats unthinkable!!

I know we want, and need answers, but sometimes they just can't be found.

Hopefully everyone finds some relief.

Cathy

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Hey all! I just saw my PCP yesterday and actually asked him if we should test for EDS and MCAD, as I have symptoms of both. He has no idea what POTS is, but is super supportive--and didn't just say "talk to your cardiologist", which I really appreciated. What he did say was "would it change anything about your treatment if you did know?" Hmmm... Well, probably not. I'd have to go to the Mayo or another POTS savvy institution to get an evaluation of underlying causes. It ain't gonna happen... I do see on a daily basis the effects of my blood pooling in my legs. I don't ever remember my legs and feet being so mottled red, and "heavy". I really think my condition stems from the inability of the valves in my lower body from functioning properly. Yep--that's what I think is the cause of my POTS (and I'm stickin' to it!) Of course this also effects the lack of blood to the brain and heart (as you all know). It's also effected my vestibular system--dizziness, balance problems, vertigo and the worst exhaustion I've ever felt. Yikes--I'm a mess!

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