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never knew POTS was so debilitating


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Hi everyone

Sorry I've not been about for ages. I'm just out of hospital. college went horribly wrong..I got a flu bug when I was there and in the end every single time I stood I was going tachy.

It was far worse than ever before though, and I ended up in hospital. THey thought I'd broken my neck the first time I'd landed so awkwardly, but I was sent home and told to get on with it. Then I got much, much worse until I couldn't do anything for myself.

They were lovely in the hospital, told me they knew about POTS but it's extremelyrare (only 6 other people in the whole of Scotland with it) and no cure exists. THey have me on midodrine and betablockers but these attacks still happen, it's just that my pulse is slower when they do.

They said there's nothing else they can do for me and sent me out in a wheelchair.

The thing is, I wonder if ablation might do some good. My GP is on the case with that at the moment- has anyone tried it and had it WORK?

They told me that only young people get POTS- is that true? They also said that because you rarely hear about older people with it, it might just go away as I get older. Was I being fobbed off, or can POTS really just go away all of its own accord?

Hope everyone is well, sorry I'm not!

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On the "things to avoid" section on this site, the ablation is the first thing listed. I had a double ablation prior to being diagnosed with the POTS. Although it did help lower my heart rate - it doesn't go above 180 anymore - I actually felt worse and had more POTS symptoms after the ablation. This is just my personal experience.

I don't thing POTS just goes away. I think there will be times where you are less symptomatic but I've never heard of it going away. At least that is my understanding anyway.

On this board you will find older people that have POTS so I have to disagree with the statement that only young people can get POTS.

Hope this was of some help.

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Dear Persephone,

Sorry to hear that you're feeling so unstable presently. I am one of the "older" people on this forum having developed POTS at 49 1/2 years of age after a nasty viral infection. I am of Scotch-Irish and mixed European heritage and visited Scotland for the first time about 5 years ago. What a gorgeous country! I wonder why my ancestors left. I was incredibly ill for almost 2 years (practically bedridden for the first) and have improved extremely slowly, but still have POTS. I have had to adjust my expectations about what I can and can't do over the last 3 years. Drinking a lot of fluids (64 ounces a day) helps a lot but doesn't cure the symptoms for me. My docs were afraid to put me on a lot of medication because my BP is all over the place and they didn't want to stroke me out. The one medication that has helped control my tachycardia is Xanax, controversial for some because of it's addictive qualities, but I haven't found that to be the case for me. I was also on Neurontin for a long time because of terrible headaches and have recently been able to taper almost comletely off of it. I have also heard that ablation is not advisable just for POTS alone. Doing some leg strengthening exercises has helped me with the blood return to the heart and gentle Yoga stretching on a mat to a DVD tape is somewhat centering for me as well. Watching my diet and not overeating helps me too. I hope that you will also improve somewhat over time. Take care, Martha

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Persephone,

I read a news article about a new application of an existing drug, Pyridostigmine, about which Dr. Philip Low of the Mayo Clinic said, "We wanted a 'smart drug' that would only increase blood pressure when standing up, and not when lying down."

Perhaps you could investigate this. I hope school goes better for you.

Frank

Hi everyone

Sorry I've not been about for ages. I'm just out of hospital. college went horribly wrong..I got a flu bug when I was there and in the end every single time I stood I was going tachy.

It was far worse than ever before though, and I ended up in hospital. THey thought I'd broken my neck the first time I'd landed so awkwardly, but I was sent home and told to get on with it. Then I got much, much worse until I couldn't do anything for myself.

They were lovely in the hospital, told me they knew about POTS but it's extremelyrare (only 6 other people in the whole of Scotland with it) and no cure exists. THey have me on midodrine and betablockers but these attacks still happen, it's just that my pulse is slower when they do.

They said there's nothing else they can do for me and sent me out in a wheelchair.

The thing is, I wonder if ablation might do some good. My GP is on the case with that at the moment- has anyone tried it and had it WORK?

They told me that only young people get POTS- is that true? They also said that because you rarely hear about older people with it, it might just go away as I get older. Was I being fobbed off, or can POTS really just go away all of its own accord?

Hope everyone is well, sorry I'm not!

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Ablation was the worst thing I ever did!!! It made my symptoms so much worse. I don't know if this happens to everyone, but the literature my doctor got ,afterwards of course, said never do ablation as it's the only way the body has to compensate for some things. I don't get nearly as much tachycardia, but I feel a million times worse. This is a personal experience however and a decision to be made by you and your doctor. I have a lot more arrythmias. It's like my heart wants to go fast and when it can't, it hops into arrythmia mode instead. I know some people on the site got pacemakers and things, so there are more people with their own experiences, and you need to be patient and see if more respond with positive experiences. Good luck! morgan

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Hi, there,

I had an electrophysiology study back in 1998 because I began going into fibrillation, but the doctors couldn't find where my tachycardia was coming from. My doctor said that he could see overactive cells running around in my heart, and he debated blasting each and every one of them. Thank GOD he didn't because he would have blasted 1/4 of my heart away, and if he missed even just one cell, he said, I would still have tachycardia, so he just sent me home on a calcium channel blocker. Now, after reading what everyone here has written, I am so very thankful that the doctor did not ablate. I have had two severe tachycardia spells this month, one with beats around 200 that sent me to the hospital. They upped my heart medicine and sent me home. Since that time, I've had one spell but it didn't last long.

I've yet to be officially diagnosed with dysautonomia (I was diagnosed with POTS 10 years ago but wasn't told anything about it). I've simply listened to my body, read a lot, asked a lot of questions and followed a lot of advice from people who have been there with this.

The only people who I've known to have had a successful ablation are those who had the extra piece of skin in the heart that was causing the tachycardia but had no other POTS symptoms, or those who had a dual pathway (Wolff-Parkinson's, of which I have but it doesn't react) and had one pathway ablated AFTER doctor's saw that the tachycardia was being caused by the second pathway, and who had no other POTS symptoms.

It's up to you and your doctors what is best for you, but if you have POTS and tachycardia is your body's way of trying to help you cope, then I'm not sure I would have an ablation if I were you. There are plenty of meds out there that will help with the tachycardia once the POTS calms down.

Take care and please let us know how you're doing.

Oh, and I had my fibrillation episode in February of my senior year in college. It had taken me six years to get through--went through a very ugly divorce and a severe bout with POTS that put me behind--so when I began with the fib, I was so afraid that I wouldn't make it to graduation and would have to drop out again, but I made it, and you will too. It may take a little more time, but you'll do it, and when you do, it will mean all that much more.

Blessings to you.

Linda

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Guest tearose

Oh dear perseohone! I just figured you got busy with school and that was why you weren't around. I am so sorry to hear of this setback! Thank goodness they were kind to you in hospital. You sure have had a rough time with being so weak though.

I have had dysautonomia for about 14 years. Yes, they "fobbed"/fibbed, but maybe to give you hope that one day you may be one of those who "get all better". Keep that hope but in the meantime deal with your symptoms.

I always try to think of myself as a 30 something year old to help keep myself "mentally young" however I am 40 something...I tell you this to reassure you that you can learn to live with the high heart rate if you are able to manage it on your own. If you can't manage it on your own, you will probably use drugs to manage it. You have to try different things till you see how your body is responding and how you feel.

I know that the compression pantyhose are a chore to get on in the morning BUT they are the best thing to get my heart rate down to a manageable level My standing heart rate clearly comes down a good 15-20 beats per minute when I'm compressed.

I also want to mention that I think all of us are more prone to a major "setback" of all our worst symptoms after we have been ill. It has taken me 2 months to recover from the flu I had in late December!!!!

Hang in there perse, be creative and find your way to deal with this...you can do it!

feel better, tearose

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Thanks everyone, you've been groovy and fab as ever. You've helped me already.

THe worst thing is isolation that comes with this. In the hospital, I was the only person on the cardiac ward who wasn't 85! It feels so unfair..the ward had so many old women who have done nothing to help themselves, smoking and drinking (the number who went outside in the freezing cold, wheezing, to have a cigarette was shocking!) whilst I'm 23, love the gym and swimming, have never smoked, rarely drink and follow a gluten free vegan diet. I know I sound like a spoilt brat but I just wanted to shake these women and say "what ARE you DOING?"

They're able to walk about, and I'm the one sent out in a wheelchair :(

Today is the day that I should have been helping out at the biggest Poetry festival in Scotland and having a great time...instead I'm at home in bed. I went to the shops today with my mum and the number of people who just stand and stare with their mouths wide open at me because I'm in a wheelchair made me so MAD. It's disgusting the way people are so narrow minded. How would THEY feel in my shoes (or indeed, on my wheels? ;) )

Sorry about mini rant---I HAD to do it.

This message board is my life line. THankyou all so much. :o

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Rant and rave as needed, we all do.

I'm sorry you have been in the potshole, and I'm sorry you are missing out on so many other things. I too am of Scottish decent and would love to visit some day.

I agree with the others, you were fibbed to. Most don't "recover", they have "adjusted", which doesn't mean that it might not happen, but I would rather live as I do now than not at all.

As to being the youngest in the cardio wing, I was the youngest that our cathlab had ever worked with. (I had been checked for possible ablation and was then told it wouldn't work and instead had my heart, head and lower right leg checked for blackage and blood clots.)

best to you, blackwolf

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persephone

So sorry to hear that POTS reared its head again and sent you to hospital and home. Any kind of significant illness (like flu) can be a setback for us/cause symptom flare-up. The only comments I would add to the great advice and thoughts already given are--are you keeping up with fluids and electrolytes/salt on a daily basis, as that can make a big difference in symptoms? Also, there are many medicines available to treat symptoms of POTS. It may be that the appropriate combination hasn't been found for you yet. You may need to do some research on your own to boost your doctors' awareness of these medications.

Regarding POTS getting better or going away--it seems to be the prevailing medical view that POTS does tend to improve with time. What my specialist has told me is that there is tendency for this to be true, but there are many POTS patients who must stay on medications for long periods of time -- and when they attempt to go off the meds they tend to get worse again. Also, surgery and other trauma can set off symptoms again in many people with POTS, even if it has been mild for awhile. Some people do not get better, most people do--is basically what my doctor has told me (who has studied and treated POTS patients for well over a decade.)

I think you have every reason to hope and believe that over time you WILL get better.

Take care,

Katherine

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