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Freaked

How Bad Can Pots Be Untreated?

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I came down with POTS six months ago and have been left basically untreated. I went to an autonomic clinic but they 'don't like diagnosing POTS' so they're just treating me for the hypotension and prescribed me fludrocortisone. Unfortunately I often have low potassium and I have hyper-POTS so I get blood pressure spikes; not sure if the fludro is going to work out for me. Had a bad few days when i was on it - my heart wouldn't go below 100. The clinic views the fast heart rate as a good thing cos it stops you passing out. So they didn't give me any exercises, don't know much at all about POTS as a condition and are only seeing me every few months. My cardiologist didn't view it as a cardiological condition either.

I'm basically wondering how bad POTS can get in this situation. My heart rate is high, i get skipped beats, I can barely walk at all, suffer really unsettling chest/upper body spasms, often feel sick and sweaty or vomit. Being 21 and housebound, plus really physically lousy feeling the whole time, has started to get to me mentally and it's been hard trying to find help for that too. So far the only real lead I have is a Canadian cardiologist Dr. Glover in the city who has helped people with POTS, or at least he used to a few years ago if doctors here haven't shamed him out of it yet.

I was basically wondering if other people have been so debilitated, or for so long?

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Yes, unfortunately I think the whole diagnosis and treatment process for POTS seems to be very long and drawn out. I've had POTS for 14 months - it took 7 months to get a diagnosis, 2 more to find a doctor who would treat it (but only with beta blockers which made me even worse) and I finally had an appointment with a POTS specialist 2 weeks ago (the wait times are awful!). And he made it clear that I probably have more testing and lots of trial and error ahead before I can expect improvement. And yes, it can be very debilitating as well. I've been mostly housebound since November - there are ups and downs, I was largely bedbound for a few months in the spring but some weeks I can leave the house a few times. And I know there are other people on here in similar, or even worse, situations.

I'm sorry about your terrible experiences with your doctors so far! I think most of us have been through that, but that's just ridiculous that an autonomic clinic wouldn't be very familiar with POTS. Your cardiologist may be right that POTS isn't exactly a cardiological condition, but he could at least help you find someone! Have you looked for any cardiac electrophysiologists or neurologists that may have experience with POTS? Maybe there are some other Canadians on here who have better recommendations. Have you considered travelling to America to see a specialist? I'm not sure how expensive it would be, but if it's financially feasible maybe that would be something to consider.

This may not be a very positive answer, but maybe it'll help you to know that other people are going through the same thing. There are doctors out there who are empathetic and actually understand this thing (sort of at least), but it can take a while to find the right one and the find the right treatment and that whole process is so frustrating and disheartening. It seems so unfair that on top of the physically difficulties of being sick every day, we have to deal with doctors who don't believe us or say we're too confusing or too hard to treat, and sometimes that really brings me down too. I'm also young - 23 - so I understand the particular difficulties of being this ill at our age. It's a time when we expect to be very active and healthy, not worrying about doctors appointment and medications and whether it's even possible to get out of bed each day. I feel like I have more in common with the elderly now than with people my own age. And sometimes young people aren't very understanding - my parents friends are actually a lot nicer about it, maybe because they're more familiar with the idea of chronic illness. A lot of my friends have seemed sort of frightened/depressed by it, or just don't understand why I'm still sick, so it can be very isolating. If you're well enough to go, you might consider finding a psychologist or counselor who specializes in chronically ill patients - I see one sometimes when I'm feeling down and it's nice to have someone who understands where I'm coming from (at least has seen lots of similar patients) plus it limits how much I burden my family and friends with my fears and frustrations.

Good luck finding a better doctor who will actually treat you! I think it's normal to be mentally down about this sometimes, but just stay hopeful that it won't always be like this, you will find someone who can help you.

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Hi freaked...

I am so sorry you are having a rough go. I was diagnosed with "pots" last August and just finally got an appointment in Hamilton,Ontario in September.

It really is a trial and error type of disorder, I have been on the same meds since Aug.2012. No one wants to touch them till I see theguys in Hamilton....lol

I have found that compression stockings help (not the sexiest things on the planet but do help with the pooling in your legs/feet)

Also you can ask your gp for a referral to one of the specialist. Where are you in Canada? I know about Dr. Morillo in Hamilton, Dr.Schondorf in Montreal, Dr.Cliche in Montreal, and another doctor in London.

The wait times are seriously crazy, so anticipate that.

Till then, get to know your new you (corny I know), you will learn the signs. I personally salt load, stay extremely hydrated, and get enough sleep. I find that once the tired kicks in and you try to push yourself, the next day or days can be cruddy. It's hard being in your twenties and trying to figure this all out. My cardiologist is a great guy, and when I went in there panicking about a trip that was planned before my dx,he was like....what's the worse that's going to happen, you will feel like poop, you will be tired, but you're not going to die.....Reassuring right....lol

Anyhow, I did see a psychologist for coping mechanisms and how to deal with all of the fun stuff. And it did help.

Sorry, I tend to run on....I wish you all the best and if ever you want to vent feel free to pm me.

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Getting diagnosed and treated for POTS is like going to war with the medical profession. Most doctors don't understand autonomic dysfuction and they aren't willing to take the time to learn about it. Every time I go to a doctor I feel like I have to convince him that my symptoms are real and serious enough to be taken seriously. If I want to try a new drug, I have to convince him why it might help me. It should be the other way around. They get paid for their supposed expertise, but in my experience, they are really getting paid to stand in the way of me getting better.

Anyway, as hard as it is, getting the right treatment is important. Everybody deserves to feel well if possible. Before I got on Midodrine and a beta blocker I had tachycardia pretty much all the time, even lying down, and I felt sick all the time. Now at least I feel normal-ish when I am in bed. Of course as soon as I get up and try to do something I am sick again, but that is my life now.

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Thanks for the replies! And thanks for the recommendations about docs, though I should clarify that I'm not actually in Canada (unfortunately for treatment). I'm from Dublin and the only POTS doc I've heard of is from Canada. Ireland's not great for anything rare and not life-threatening - it's just assumed you'll go somewhere else in Europe. But that's disruptive, especially if you're too sick to travel easily, and not cheap.

It's so frustrating we all have to spend so long badgering doctors. You'd think the medical profession would care more that previously young healthy people were so incapacitated, but unfortunately it doesn't always seem to work that way.

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Guest maia

For me, it varied so much using and not using drugs that im pretty sure it is a complete wash.

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Freaked,

I so feel your situation and I'm sorry you are having to deal with it all, especially at such a young age. Unfortunately, your experiences seem to be the nature of this beast. I was dx. almost 5 years ago now (I'm 43) and went about 2+ years without treatment. I still don't know what type of POTS I have and even the dx dr. only dx me, then told me that he doesn't treat POTS and doesn't know of a dr. that does. I finally found a GP (referred to me by our Pediatrician) that at least has other POTS patients. He is currently treating me. As a side note my teenage daughter (17) was just dx with dyautonomia, although she also has congenital heart defects, but seems to do well as long as she stays hydrated and gets enough rest.

I have improved slightly in the last five years, but I'm not sure how much of that is due to meds and/or me just learning to "deal" with it all. It is all hard to deal with especially when you feel like poop daily and no one seems to have the answers. I would agree that finding a counselor that is familiar with chronic illness could be very beneficial. I think it is important also that since you know that you have hyperPOTS that you try to search out what others have done to improve. There can be a difference in protocol for the varying types of POTS/Dysautonomia. I think I have hyperPOTS (although have never been tested as no dr. in my area knows much about the whole disorder much less the different types) so for me personally, salt loading, compression stockings and all that doesn't seem to help me. I can't take excess salt as it tends to raise my bp too much and into the hypertension area. I don't have low bp nor do I faint.

Everyone is different and reacts differently to treatment. I sincerely hope that you find the answers you are looking for that can lead you to a better quality of life.

Be well,

Bebe

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Freaked

Where did you attend in Ireland?

I have been at St James FBOU and found them quite good at first.... however i may have been overenthusiastic as I think now it was more of a "better than the worst ive encountered" scenario!

I have had a very bad relapse the last 3 wks (had been getting gradually worse for a couple of months). The last couple of times when I attended i have found there is no recognition of POTS (as you said I was told it was good cos my heart is doing a GREAT job of compensating!)my fludro was just doubled "to keep my bp up". Which caused other problems cos it was too high for me and didnt control the tachycardia.

There seems to be a huge emphasis on Low blood pressure and diagnosing NCS or Vasovagal syncope.

They done a TTT(nitroglycerin) couple of months back (ive had 3) and my BP crashed post nitro...but that was the first time it ever had and I think it was the Nitro more than the condition that caused that....anyway it seemed to just reinforce their belief that its NCS despite the fact i never ever faint!

Im utterly frustrated at trying to explain POTS to docs here who then insist on looking at BP constantly especially in a specialised Autonomic centre! For me its the Tachy that is constant and causes most of my symptoms.

I ended up in local hospital for a week last week and the docs were shocked at what the HR monitor was doing....it seems they have to see it to believe it...HR 45-50 resting up to 160 when I went for a walk. Its the first hospital admission I have been taken fully seriously about how sick I get with it....it helped that one of the staff membrs who had worked on the ward had been diagnosed with POTS....i got understanding and sympathy for how ill I was this time!!

I believe my bp drops when my HR tries to relax n HR pumps up again....if any of them actually stopped and thought about that they would recognise its like running a constant marathon!

Anyway Freaked...im with ya here on the lack of understanding of the condition and the frustration of that really starts to get ya down! I am considering going drug free again myself as I am unsure how much the fludro is actually helping me now however my experiences with POTS would tell me there's a good possibility I will get very unwell again and could get more debilitated than I already am. Definately at a standstill !!

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I got extremely lucky and just happened upon a cardiologist that knew what is going on. Even so, it still took a long time of trial and error till we got everything under control. Then without warning everything has fell apart, I cant take the proper medications, and I am back to fainting.

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Freaked, I'm also in my 20s and I agree with everything lejones1 said. As hard as just living is when you're sick, you have to advocate for yourself, and seek treatment yourself. I'm sure you've already tried all the non-pharmaceutical treatments (exercise, tons of liquids, salt) that you can do "for free". If you bring medical journal articles with you about POTS treatments to your PCP (or "GP" in Ireland?) perhaps he will be receptive if you approach it in the right way?

But to answer your question directly - I was untreated for the first 6 months too, and while I had better weeks and worse weeks, as a whole it was just a decline until I ended up in the hospital on my back for 2 weeks, could hardly stand up at all, and then started exercise. Now, I don't know if the underlying condition causing my POTS is getting better or worse (Small Fiber Neuropathy in my case), but I do know that the 'treatment' has at least made living day to day more enjoyable. I'm still quite debilitated (and no my friends (and even family) don't really understand the disease or why I'm no longer around), but at least I can smile sometimes and feel relatively normal sitting down, which I didn't always when I was in the thick of it that first 6 months.

So yes... not getting any treatment is bad in my opinion, but that doesn't mean when you do it will be too late to start to turn things around. Take things one day at a time, be an advocate for yourself, and find a doctor who will be an advocate for you too. I don't know the situation in Ireland, but you must keep seeking treatment. We're too young to not be treated. Why should millions of Euros be spent on some person in his 80s on his death bed and not on you... in the prime of your life in your 20s and significantly debilitated?

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I went undiagnosed for 8 years. Age 16 to 24. Then after getting diagnosed, the meds just gave me a lot more problems or did nothing. I didn't have any positive change with salt loading, fluid loading, exercise, saline IV's, electrolyte drinks, DDAVP, midodrine and florinef, so I don't bother with those. Beta blockers work a tiny bit, but again not worth the other symptoms I get from it. I consider myself an untreated POTSy at this point... I went to the doctors 5 years ago to get a diagnosis and treatment, but I realized it was not what it was cracked up to be...Some people seem to do better than others with various treatments and some people just get better with time or go through relapses. I definitely can't understand that because that has not been my personal experience at all. For me it's in Jesus' hands at this point because doctors and naturopathic means have had no appreciable impact on my health at all. Take care

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