Pots: How To Believe You're Not Dying

[Freaked]

I'm having real trouble with this. I've had such scary episodes since all this started, and when it comes to my heart I just have trouble ignoring stuff. For example, I notice now that when I lie on my front or certain other random times, every heartbeat tickles. Not skipped beats or anything, cos my pulse seems to feel regular when it happens, but I don't know what it is. I don't know what any of this is; docs told me a bunch of times my heart looked fine, and yet it goes so fast whenever I do anything and I feel so bad.

I hate things I can't understand, and when it comes to post-viral pots no one seems to know anything about what actually causes it. They just tell you that they don't think it kills people. Well good, but how can you know for sure when you don't know what it IS? And that's why we get these half-measure treatments that aren't actual cures.

Sorry for the rant; I'm just sick of feeling so fatigued and sick and BAD all the time. It's very hard to believe at times that I'm actually 'okay'.

[E Soskis]

I have to agree with you - how can we be OK when we feel so yucky? -It doesn't make any sense! I'm sorry you feel so bad - it is definitely not fun to be sick all the time - for me, I had to quit dwelling on the "why's" and move on to the "how", as in, how do I make this better? Maybe it is a little easier for me because I have worked in medicine for so many years. I have seen the very real limitations on true medical knowledge and treatment of uncommon illnesses - in some ways, medicine is quite advanced in knowledge and understanding but, there is still a long, long way to go. The more common a disease is, the more is known about it since that is what gets studied and researched the most. I mean, when you think about it, how many illnesses and medical conditions are truly "cured"? We treat the symptoms of heart disease but, it is not cured. Some cancers are cured - until they recur somewhere else in the body. We can't cure a common cold. So...we're pretty good at managing symptoms but, that's about all!

[Hope]

I'm with you, I don't believe they know if this will kill people or not. If we do die, they can always blame something else, or put "undetermined" or "natural causes" on our death certificate. It sounds morbid, but I have thought about this a lot. Like, just put "It was all in her head" on my grave stone! My dad died of colon cancer, at home with hospice, and for some reason they put diabetic renal failure on his death certificate. He had very mild diabetes, not on any meds. I've lost trust in our health system and most doctors. I appreciate the ones I have now that aren't working against me. They are doing their best to help me, I believe, but there's just not enough research for our type of illness and it seems the research that is out there for post-viral illness is ignored by the medical community. It's only the doctors on the fringe that don't take insurance or very limited types of insurance that seems to recognize what might be going on and the insurance companies won't back them.

I just know that I am gonna live until I die, whether I die from this illness or hit by a truck, it will be my time to go.

Not a very uplifting reply, sorry! I commiserate with you totally!

[MomtoGiuliana]

While I don't necessarily disagree with what anyone has said in response, I would like to add that there have been many, many people using DINET since I joined about 10 yrs ago. I am aware of almost no deaths. The one death I am aware of occured due to pneumonia. I don't know the situation well enough to know if POTS played any significant role. I think if this condition were life-threatening I would have seen a different trend over the years. I think it is important to trust what is known about POTS and what other people's general experiences have been. It doesn't help to be unnecessarily anxious, IMO.

I do understand how you feel b/c when I had acute symptoms 10 years ago I had the same fears. The symptoms were so intense and I felt so weak it was hard to believe there was nothing seriously threatening my life at times, particularly prior to diagnosis.

The things that helped me, besides time and SSRI, beta blocker, added fluids and salt and forcing myself a bit to spent more time upright or walking, was breathing exercises and visualisation. I do think for me, this helped to relax my body and mind which helped the physical (and mental) healing process. You might look for Spontaneous Healing by Dr. Andrew Weil. It includes breathing exercises. For me also, spending time outside was helpful. I think when you are housebound there is a tendency to stay indoors and fresh air and sunshine, for me, is helpful. Of course on a super hot day it may not be!

I do think the mind is pretty powerful and while I do not think positive thinking will cure POTS by any means, I do think it is a part of the coping and healing process.

[Guest maia]

I'm having real trouble with this. I've had such scary episodes since all this started, and when it comes to my heart I just have trouble ignoring stuff. For example, I notice now that when I lie on my front or certain other random times, every heartbeat tickles. Not skipped beats or anything, cos my pulse seems to feel regular when it happens, but I don't know what it is. I don't know what any of this is; docs told me a bunch of times my heart looked fine, and yet it goes so fast whenever I do anything and I feel so bad.

Sorry for the rant; I'm just sick of feeling so fatigued and sick and BAD all the time. It's very hard to believe at times that I'm actually 'okay'.

After what i have found out this past week, i hope docs stop referring to cardiologists after a workup to make sure the heart is ok and start referring to all other specialties until something is found out as the cause. If the heart is fine, tachycardia is a symptom, and imo the cause needs to be determined and treated, not the symptoms.

If your heart has checked out ok, then try and trust that. by all means if you are concened keep going back to makes sure but in between try and do things that you are comfortable with and that dont aggravate your symptoms. if something agrivates the symptoms and you dont die, remind yourself of that. i didnt die last time this happend so lets see if i can do it again. didnt die? ok, i know i can do that and even though it feels awful it isnt going to kill me.

i second the breathing and visualization and getting outside. even if you can only walk out the door one step. drag a blanket along to lay on or wrap up in, bring a pillow and get some air and sun. look at the scenery, try and truly enjoy it, the colors, the sounds, bring a book. even if you cant enjoy it, fake it till you can. it will come. think about good things and focus on them so even if its only for a few minutes you can have those few minutes of peace. then revel in those few minutes of peace. Talk to your heart, tell it its ok and believe it, tell it its ok to calm down and a little, etc. may sound crazy but the way you talk to yourself has a definite affect. Try and lay in a position that doesnt aggrivate it. If you consistently notice it being in the same position, get it checked. get your kidneys checked.

and above all, keep searching for an answer. if you dont get one from one doc, go to another. tell your doc to get you a social worker and get some help there, they can coodrinate services or point you in a direction and they can come to you.

Im beginning to wonder about post viral pots too... that was mentioned with me but i wonder which came first. I was doing a lot of heavy work, got sick and couldnt stand. bam. i was never tested for any viruses. Did my kidney fall and cause me to be sick which was called a virus because they never looked any further?

fwiw as far as im concerned, rant away! sometimes its the only thing that helps.

[margiebee]

I often appreciate the irony of the fact that I, a person with severe Obsessive Compulsive Disorder, ended up with a chronic illness that is severely under-researched and not well known with so little information out there about it. I think that my persistance due to the manner in which my brain operates is the only reason that I have a diagnosis today, but unfortunately that persistance doesn't end once I've found the sort of semi-answer that POTS is. I constantly worry about what the underlying pathology could be (working on getting an answer), what the final outcome of all of this is, etc. It does overtake my mind sometimes.

Since my brain is repetitive in nature (or "obsessive"), I find that repeating a mantra such as "I am living in the present, I am at peace" while meditating to be helpful in slowing the worrying thoughts. The bottom line is I'm being treated at one of the best hospitals and I don't need to be grasping for control like I do, I need to just live and I do have faith that the answers will come. I think its really important to be able to express feelings like this, it really does eat away at you.

[Freaked]

Thanks for the replies everyone. Margiebee, I've also been, uhm, known to become obsessive, and like you the wondering drives me nuts.

I do know that if pots was a more potentially fatal diagnosis, it's likely it would be taken more seriously, but like Hope I do sort of worry that they'd just diagnose you with something else post-mortem, like Prinzmetals. And then people would be like 'ah but it wasn't the pots that got her, it was the Prinzmetals' (yes I do worry that I've had artery spasms since coming down with pots).

MomtoGiuliana, it is reassuring that more forum members don't drop dead (touch wood), but then if I did, I'd highly doubt anyone here would ever know about it unless I told people to announce it specifically. But yeah, longitudinal studies on pots survival rates are mostly pretty encouraging, and I try to tell myself that.

I suppose I just always have the worry at the back of my mind that this isn't just pots. I've had fairly severe angina-like pains when I run my whole life and was investigated cardiologically a few times in my childhood and teens, so when I came down with pots symps my fear was and is that it might be a worsening of some underlying condition that's hard to find, like microvascular dysfunction. My cardiologist has basically given me the middle finger at this point and I think my parents (ie the money) would go nuts if I said I wanted more tests atm.

Thanks to everyone who suggested trying to sit out and enjoy stuff. I do and I used to be pretty good at that sort of zen thing, but unfortunately the heat atm is really not agreeing with me :-/ I feel like, whatever this is, it's stripping away so many of the things I used to enjoy. I just want to go to the bloody beach.

Maia, I agree, if they keep telling us our hearts are normal then they should really keep looking until they find what isn't.

[bebe127]

Freaked,

I am so sorry you are going through this. I too have been where you are. It is so hard not to dwell on every thing our body is doing and/or not doing, whatever the case may be. Prior to being dx I never gave my heart, vitals etc. a second thought. I'm in my 4th year with this and things have gotten somewhat better for me. I am on meds. although they do as they are intended, I still feel poorly most days. I don't understand and the dr.s don't understand, and what's worse, they don't try to for the most part. They take my original dx. of "probably POTS" and go with that. I've had no other testing done and my recent visit to the GP was a bust. I know how frustrating it can be.

Things do get better though. I'm not sure if it is partly the meds., my thinking is different, I've come to some sort of acceptance or what. I too am so sick and tired of being sick and tired. At the beginning, I felt utterly useless and helpless. I've gone through the gamut of emotions, and still go through some to this day. Honestly, if it hadn't been for my faith, my husband and this forum, I don't know where I'd be today. I too have been told it's not "life threatening" but still wonder at times why no one can figure out the 5 W's concerning my health. At the beginning, I was homebound, and dare I say, close to agoraphobic. Now, I do get out more and I even drive when necessary. Like some of the other's have said, it helped me to have a sort of mantra, "I can do this", "What's the worst that can happen." "911 is just a dial away." When I'd get in the car, I'd have my kids read prayers to me from "Praying Through the Psalms" book. I would be shaky, sweating, and ready to have a meltdown, but just by hearing them read the prayers, I was reassured and was able to get to where I was going. When I got there I would feel so accomplished. I made it! I would tell myself.

Just like MomtoG said, "I do think the mind is pretty powerful and while I do not think positive thinking will cure POTS by any means, I do think it is a part of the coping and healing process." I personally rely heavily on my faith. I try to focus on what I can do and not what I can't, although it still bothers me that I can't do those things I once loved.

I feel that anytime someone is faced with a chronic disorder, there is a grieving process of sorts that many of us go through. I found the book: http://www.amazon.com/Coping-Chronic-Illness-Migraines-Fibromyalgia/dp/0736927069/ref=sr_1_1?ie=UTF8&qid=1373116056&sr=8-1&keywords=coping+with+chronic+illness to be quite helpful.

Everyone is different and responds differently. I know you mentioned OCD, of which I do have the tendency as well. It is hard for me to not be in control. I abhor it, but it is what it is and like it or not, it's my life now. I must dwell on what I can control and that is how I react and respond to all of this. I have good days and bad days, I have pity parties at times, but I think it's important to try to pick myself up and carry on the best that I can.

I do so hope that you can find your own way of dealing with all this and that you get relief soon. Feel free to pm me any time. Ranting is important in my book. As Shrek always said, "Better out than in." Of course, his reference was gas related, but I think it works for this situation as well

Be well,

Bebe

[Guest maia]

Maia, I agree, if they keep telling us our hearts are normal then they should really keep looking until they find what isn't.

Freaked, Im like you in the fact that if something is bothering me, i wont stop until i am either entirely discouraged, convinced otherwise, or find a solution. Unfortunately the first two played into my situation for a long time. I finally stood up for myself again and demanded more answers. The cause of my pots has just been found. My kidney drops when i stand up. I also have recently been having angina like pains in addition to everything else and was even given an rx for nitro-which luckily i didnt take...

[spinner]

For one thing, many of the symptoms and triggers of POTS and dysautonomia can be brought under control over time and experience. With time comes discernment and perspective.

Myself, I have pretty much uncontrolled heat intolerance. Its ridiculous, I get overheated in stuffy 72 degree rooms.

And yet, I've relocated to a midwest climate and am enduring the summer, and also swimming in a cold indoor

pool every day.

The cold antigravity situation is CONTROLLING my worst symptom as is hydration, potassium, plenty of rest,

and a host of other things, whereas a terminal disease such as pancreatic cancer cannot really be controlled.

In the case of unregulated cardiac events just about everyone here has had them and THOUGHT they were going to die and didnt. We can gain more and more information about controlling them and changing our lifestyle.

For some extreme cases it seems prudent to move very close to an outstanding cardiac hospital so that in the rare event of something extreme it would be a quick five minutes to the ER. Personally, Ive actually gone to the ER waiting room many more times than ive actually gone in.

And then theres time. Many people simply get better, especially as they learn how to follow what works including the excercise regimens and diet guidelines.

I went to Mayo Clinic and i'll never forget them telling me how thankful i should be that i dont have the HOST of problems they were looking for such as ALS and Lupus that would be much worse IMHO.

[looneymom]

I don't know if my son ever felt like he was dying, but I know he was scared. My son did have a virus before he was diagnosed with POTS. As a mom, I watched him develop more new symptoms that were more severe after he was diagnosed with POTS. He does have tachycardia but his heart has been checked out. His heart is fine but the scary part has been all the new symptoms that developed along the way.

There were nights when I went to bed and cried myself to sleep. I was afraid my son was going to die. So I really understand your feelings. Things that have helped my son and I are staying distracted, going outside in the sun, playing board games, positive thinking, keeping a flexible schedule, and focus on things that he can do.

The other thing that I do, is keep researching and let my cardiologist know what I am finding out. No doctor can actually keep up with the latest research that is going on in this area. In my son's case because of his age and the severity of his symptoms, I just wanted to find a cure. I feel like at this point, my son and I have accepted the fact that he is not in any danger. We just take it day by day and try to make the best of it until we find a cure or underlying cause of POTS.

[Joann]

I like you get scared I will die. I know that I have something else going on along with or causing the POTS. Until I figure out what, I will be afraid these episodes could eventually kill me. Maia has given me hope that continually searching for the cause can give me the answers I need to get better. I honestly believe that an underlying problem is causing the POTS symptoms along with my other symptoms that other doctors just want to shrug off and say they don't know.

I am currently looking into my thoracic back and another cardio test.