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Is Pots Life-Threatning


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Hey guys. So I have heard here and there that you pots is life-threatning and that it isn't..... my doctor has said that it doesn't but I find that hard to believe. As time has passed I came across a rememberance video of someone who died who had POTS and also gastroperisis..... so that kinda scares me a lil. My question is does anyone know if it is life threatning? I think it is but my doctors beg to differ. I mean how can our heart rates go to 160 or more , fainting , sometimes not being able to eat , loosing lots of weight , and so on not be life-threatning? It frustartes me. Expecially when I am in a flare and am scared to death. But when I call the doc they say "yep thts pots for you , dont worry about it" I just wana scream , and say "are you kidding me"? grrrr <_< Does anyone else feel this way?

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Pots girl, if you go to my history of pots thread I posted a review article on pots (then called by different names) that had a 20 year follow up on these patients and didn't have a remarkably different death rate. Pots is very scary, but understand there are people on this board who have had it for over 40 years. We'll find ways to ease the pain together but you shouldn't worry about dying from it.

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I'm one of those that's had it for over 40 years and really haven't had a whole lot of meds for it. Just in the last few years have I added Tramadol and Bentyl - most of my life I've controlled it with natural supplements. I still think that's the best way to go. I've had a pretty full life - despite this illness. I would however, like to have more quality of life and would love to help contribute to finding a cure - or at least a better band-aid. I bet you're younger than me and you have allot of life yet to live - so don't worry about it so much. Live your life to the fullest and when you look back have no regrets. Live as if today is your last, dream about tomorrow - but LIVE today and don't take anything or anyone forgranted.

Issie

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All of the medical literature I've seen as well ultimately says POTS isn't life-threatening in and of itself. Now, if you experience syncope, then that can be a problem if you happen to faint in the wrong place / wrong time, such as driving.

I too was surprised when I learned of this.

Don't forget that this DOESN'T mean we won't get additional injuries or live happily ever after. It's just not lethal in and of itself.

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Expecially when I am in a flare and am scared to death. But when I call the doc they say "yep thts pots for you , dont worry about it" I just wana scream , and say "are you kidding me"? grrrr <_< Does anyone else feel this way?

I know, right? Crazy how we're being told to ignore symptoms that would send most people running to the emergency room! It's a little hard to get used to.

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When my symptoms were the worst I thought it was inner ear and was easier to deal with. The inner ear does not hurt you, just makes you miserable. By the time I knew the real cause, my graditude was so overwhelming that getting better was all I could think about. If you can just go with it and maybe it will be less scary. Laying usually gets the relief you need. We have lots to be grateful for and someday hopefully soon a cure. This makes life harder, but all of the dinet boys and girls are here for you. :rolleyes:

Jangle's encouraging words are a blessing for today!

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I know, right? Crazy how we're being told to ignore symptoms that would send most people running to the emergency room! It's a little hard to get used to.

Well, I did have one cardiologist who thought I should get an implanted pacer/defib. After reading that this wasn't life threatening, then looking into the side effects and complications of a pacer/defib, I opted against it. It's been quite a few years now and I still don't regret not getting it.

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Hi Potsgirl,

Having POTS can definitely be uncomfortable and feel really bad, but it in and of itself it isn't life threatening. It just feels awful.

The girl you saw on the video probably had much more than POTS going on. I don't know the details of her health, but she might have had pretty bad gastroparesis. If gastroparesis becomes severe a patient may have to be on tpn or tube feedings. It's a necessary treatment for them, but they run the risk of complications and infections, some of which can become very serious. That's not something a typical POTS patient has to deal with. And even then, POTS isn't the problem. Gastroparesis and complications are.

I know it's hard to understand when you feel your heart racing, feel faint, nauseated, etc. It's miserable and can be scary. I remember my doctor telling me when I was first diagnosed, "This isn't life threatening. You may feel like you're going to die, but you won't."

So hang in there. We're here for you and we understand what it's like.

Rachel

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Rich,

Do you have to wear oxygen 24/7? What is the nature of your breathing issues? Have you gotten to any doctors that can help you?

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Rachel thank you for the response :) Yes it is def scary and hard to understand that it is not life-threatning. But it is nice to know that it is not. It is just some symptoms that i do have that are related to POTS one of my doc says is serious and life-threatning. So mixed signals from many diff docs.

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I'm sorry, but I do have to agree with Rich. There have been some people die and it has been determined that they had POTS. Now whether it was a reaction/consequence of the medicine given for POTS or it was the dysfunction of their bodies with POTS that caused their death - we will never know. But, I don't think anything in regard to our symptoms should be taken lightly. (Just my opinion.)

Issie

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It's always important to get your POTS symptoms checked out medically. We may not all get the answers as to what's causing our symptoms, but we should keep pushing for answers and improvement in our symptoms. That is the only control that we have over our illness. There are some underlying causes of POTS that can be life-threatening such as heart failure, carcinoid syndrome, porphyria, etc. As long as I'm still sick with POTS, I'll continue to get screened for underlying causes of POTS as my symptoms dictate. Other than that, I consider it my job to take care of myself by worrying as little as possible.

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Rich,

Do you have to wear oxygen 24/7? What is the nature of your breathing issues? Have you gotten to any doctors that can help you?

My oxygen levels seem to be perfect, but that isn't an indication of all life-threatening lung problems. I have seen 3 pulmonary doctors so far and none of them can explain my breathing problems. So far it is chalked up to POTS. There is no rescue medicine for it, the only thing that helps is to stop the blood pooling by raising my legs and then to drink tons of water. Compression stockings help somewhat. I'm still exploring a few more areas, but pulmonary specialist are baffled so far. I'm going to see a POTS neuro soon, a rheumy and also going to look into lyme and co-infections..

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I know that when doctors are unsure of the reasons for this illness, it does make it scary at times, when we don't have all the answers, but God does. I know when I have trouble breathing, my chest hurts, or I have awful pain in my side, I sometimes feel like it is terminal, but I know, in of itself, it is not...Although life is life threatening, even for those who are the picture of health!! Life is unpredictable for everyone, so we need to live life to the fullest when we can!! I listen to my doctor's, listen to my body, listen to God, live the life He has given me,(It's a gift), and take care of myself in the best way I can with the One who holds my life in the hollow of His hand. Every morning has new mercies, "great is thy faithfulness" :)

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Rich,

Good luck in finding an answer with your breathing issues.

Kim, I like your thinking. Life is indeed life-threatening for us all.

Cheers.

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  • 1 month later...

http://stroke.ahajou...31/10/2307.full

Orthostatic Hypotension as a Risk Factor for Stroke

Hi Rich,

I hope you get your breathing issues worked out. I don't know if I've mentioned this to you or not but food intolerances can cause a host of problems. Soy causes phlegm in my throat immediately. Gluten appears to have been causing most of my neuro problems. The list goes on .. There are quite a few of us here that are gluten intolerant. As a parent of a child with anaphylaxis from peanuts, I know just how easily peanuts can set someone off.

They thought I was having TIAs regularly right before I had my two hour seizure which was probably a tonic clonic. After some researching I saw that caffeine could be linked to seizures and so I weaned myself off of it. I had also been playing around regularly with eating those "GF" foods that aren't gf. I knew gluten caused me to get nocturnal myoclonus, i'd just never experienced it during the day and for two hours straight.

So far, I haven't had the TIAs or a major seizure again ... kow ... i came close when I had a fasting blood draw but I had Klonopin to stop it.

I know that technically that TIAs and seizures (petite mals) aren't the same thing but as someone who's probably experienced both, IMHO, it would be hard to tell the difference unless an experienced doctor was present. With the TIAs (?) I couldn't think, I slurred my words and I had to take a nap afterwards. I can't think when I'm having petite mals either but I don't slur my words and I don't need a nap.

tc ... d

PS. I wouldn't expect our dysautonomia doctors to know about the caffeine or gluten connection. It's still to new for them ...

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Diet: Lots of water, low sugar and dairy, not a lot of white flour or pastries, lots of veggies, oatmeal, brown rice, whole grains and some fruit.

Rich,

At the risk of being a pest, I wanted to let you know that most of the people I know would be sick if they ate what you're eating.

Sugar, dairy, gluten and all other grains cause problems for a lot of people. Oatmeal is heavily cross contaminated with gluten so most of the celiacs I know don't eat it. Many of those who try the Bob's Redmill GF oatmeal have problems with it too.

If you're interested, IMHO, the Wahls diet looks like the best option for now. I was Paleo but I was eating to much meat and not enough veggies. Speaking of meat, do you eat it ? From what I've witnessed and read some of us need it ..

I was recently told to back off drinking so much water too. It depletes our electrolytes. Fruit is a better option. I was told to eat citrus because it contains a good amount of nutrients and liquid.

Hope I'm not being a pest. I see so many people here that IMHO, would feel better if they would just changed their diet. And with you having such severe breathing problems I get worried.

FWIW ... I'm 56 years old so I think I may be stuck with dysautonomia based on all the physical damage I have now but I'd hate for someone else to get to the point I am if it's just a matter of changing their diet. Not that I know this for a fact of course, but what do you have to lose ?

Hope you feel better soon and hope I'm not being too pushy ... tc ... d

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For me that is simply not true. I have had hyper A pots for 31 years and POTS. I am middle aged. I have had two heart attacks from coronary spasms from adrenaline rushes and continue to have them. I have diastolic heart failure from 30 years of tachycardia and on and off high bp control. I cannot retain any salt with saline in a port and almost died of that in 2003.

I've had ten hospital trips in last 12 mos. for bp as high as 250/140. Think I might have a stroke? Does that sound life threatening to you?

I am allergic to heparin in the port so I can die of a blood clot at any time, but if I don't get saline twice a week, I have a coronary spasm and the bp over 230/130. I have syncoped driving down I-75. I have to take a massive overdose of clonidine (got special approval from insurance), beta blockers and trandate plus other treatments to keep bp below 200/100. Any change in my body at all (a cold, walking extra) and I loose that bp control.

I've not even gotten started. My pcp referred me to hospice. I have NO OTHER conditions other than POTS and probably ME/CFS. I have totally clean arteries (no idea how, but I do) but even a cool breeze will cause my coronary arteries to spasm. BECAUSE the linings of my arteries are so damaged by constant NE releases, per my cardio.

I've watched this post for some time. I've finally decided to tell my truth.

IN MY PERSONAL CASE, I ended up like this because I did NOT stop working and pushing myself. I think it's dangerous to pretend you can't die from dysautonomia. I'm warning my friends that it might be too late once you've overdone it.

To me personally, suggesting that our illnesses are just inconveniences is demeaning. No, POTS IS A BIG DEAL to me.

Edited by corina
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It is life threatening to be alive. I guarantee that one day, you will no longer be here.

On that note, people with ailments such as ours have an advantage in that they cherish what they do have, and they do not take anything for granted. Every day is a blessing. Live every day like it is your last and you won't regret it. Nobody is guaranteed tomorrow, healthy or not.

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Elegiamore, so sorry to hear about your state. Is there any potential for utilizing IV stem cells? It might be possible to repair your endothelium. I'm assuming that's what they mean is damaged when they refer to the lining of your arteries.

When you say you had hyperpots for 31 years, was it even early on in your hyperpots that you would have high blood pressure from standing up? High blood pressure itself can damage the endothelium without the NE explanation.

That said, it is true that POTS can be very severe and drastically impact one's health. One should not negate this fact, but it also shouldn't make us afraid to live our lives. We do need to take it easy and incorporate treatment plans to reduce our NE levels such as aerobic exercise etc. etc.

Thank you for sharing your story.

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