"hopeless" Is What He Said

I went for a routine appointment yesterday to my cardiologist and things did not go well. I will try my best not to be all over the place but my brain is scattered and it was a lot to take in. I guess I will first just give a very brief account of what led up to this point for those who may have not read my first story. I had my son 7 months ago and due to complications after delivery I recieved 3 surgeries, the final one being a hysterectomy. Shortly following the surgery I had an episode where I blacked out 3 times one evening which resulted in a trip to the hospital. After 4 days of numerous tests, including the tilt table, I was officially diagnosed with a sudden onset of POTS. My treatment since has been the typical diet change, stockings, and all those things, as well as Fludocortisone, Midodrine, and Inderal. Unfortunately I have had no benefits to the good and in fact had a few reactions to the medicines that were unpleasant, but overall, I am no better or no worse since beginning treatment. This brings me to my appointment yesterday. I will just begin by repeating a sentence my doctor said that esssentially wrapped everything up and then I will go into more detail. My doctor literally told me yesterday that I am in a hopeless situation. There are many reasons he said that make my particular situation like this. First, he is confident in stating that my POTS was a result of giving birth to my son and it in itself is the hardest POTS to treat and has the lowest recovery rates. On top of that, mine was a sudden onset rather than gradual, which those with sudden onset are much harder to treat and have the lowest recovery rates. So essentially, having those two things combined made my initial chance for any recovery remarkably low. What finally became the determinant of my final fate was the fact that I had no changes whatsoever from initial treatment. He said that in those hard to treat situations alone, if no changes are made, even slightly, from the fludocortisone and midodrine, your chances decrease significantly, and in cases like mine the chances are so small that they almost disappear. In any case, even though my doctor realized that before this he still made an effort and changed around the doses and added the inderal. It was worth a try he said. In any case, as I said, no changes. On top of everything else, the way my body reacted to the medicines in other ways made the possibility of even just trying other medicines for the heck of it impossible because the reactions carry severe risks that could lead to death, even from just one dose. So putting this all together, this ultimately left my remaining chance at less than %1, or hopeless as my doc put it. Now not to say that this is it. He said he would still mess with the doses of the medicines I'm on just so it can't be said that we didn't try but in the end he told me that what we need to start thinking and focusing on is ways we can at least make me more comfortabl, and possible preventative treatments for some of the effects that could result in the future from the POTS. Mainly focusing on the black outs because obviously with no treatment I will have the black outs for the rest of my life and eventually that can cause many issues, most commonly memory loss. In addition, the extreme fluctuation in blood pressure is another main focus because many things could result from that so he hopes we can at least prolong these things, lessen the level of severity they could cause, or in the best case, completely prevent them from occurring. In any case, I'm not exactly sure what his thoughts are in regards to "making me comfortable" but he is setting up a meeting for me and my husband to come in and have a nice long discussion with him. My doctor did also offer his referral to see any doctor of my choosing, fully paid and everything, and he said that decision is entirely up to me, but he said that I should understand that I will only hear the same things he is telling me because of the nature of mine. He said I could find many doctors who could offer possible treatments for patients with POTS and in fact, he himself could offer many other treatments if my situation was different but because of my situation as a whole, it just isn't even a possiblity. Basically, if I had what they consider a typical case of POTS, there are numerous treatments that could be tried. Regardless, I still considered other docs but thought maybe it would be wise to call a few doctors and see what their initial thoughts were before making any decisions and it ended up only aiding my hopelessness. A doctor cannot outright refuse you but each and every doctor I spoke with said that it would he a waste of my time because they could do nothing more than simply back up my doctors work and basically be a second opinion. The only thing I did get out of all of it is one of the doctors gave me some information on a way to contact a research facility and get my name put on file in the case that they conduct any studies or find something new to try and I would be a guaranteed participant. So needless to say, I am severely depressed over the whole thing and I just don't know what to do. I knew that this was a tricky thing to treat and chances of recovery were small, but I never imagined that I would be told that I have to live with this the rest of my life without even so much as an improvement in symptoms. I am only 27 years old with two children. I have a long life ahead of me and I can't believe how much it has changed overnight. Every aspect of my life either has already changed or must change in order to adjust to my illness. Even with the best family support system you could ask for, it does not make it any easier to deal with or any less depressing. And the thing that ticks me off more than anything are the people who say "At least you still have your life and your not dieing like someone diagnosed with cancer", or "At least your not a parapalegic for the rest of your life". It may be different but it doesn't mean it doesnt effect me in the same ways. Anyone who suffers from POTS knows how debilitating it is, especially if you are unfortunate enough to get the constant black outs or you are bedridden. I'm sure almost everyone has even had that thought that they would rather just die. Of course thats only a thought that most of us think out of frustration and depression, but to even be driven to the point where that thought even enters your mind just goes to show how much this illness can affect someones life. I anticipate that it will take some time for me to accept my situation and begin to deal with it appropriately, but right now I just can't get past that point and I get even more upset and agitated when I realize over and over that no matter what I will eventually have to deal with it and live the rest of my life like this! I just don't know how I'm gonna get through this, especially with my insanity still intact. I'm just worried that I will never be able to accept it and end up being miserable and depressed on top of everything else, which is my worst fear. It is one thing to be miserable or to be sick, but to be miserable and sick would be hell. I have said before that I would do everything I could to be sure that even if my outcome was not what I would hope for, I would be sure that I would not be miserable because that was my biggest fear. But that was easier said and thought of at the time when I still had hope and didn't feel the emotions that I have felt and continue to feel since my appointment. I'm not sure what to do or how to even begin to accept this. I am just depressed and frustrated and boiling over with emotion! I just don't know...I am lost and empty at the moment and just hope I can get past this and soon!
aljones414 aljones414
26-30, F
5 Responses Jan 11, 2013

Oh an as a comment on the mention of teens recovering from POTS. I was very hopeful that since I was a teenager when I was diagnosed I would be fine by 25. It is not impossible but I also think it may be improbable because the doctor has not decided that I probably developed POTS after a prescription drug overdose when I was four. Doctor reports after that incident report that my heart rate was extremely high but would get better with age. That is becoming more and more unlikely since I hit puberty early on at age 11 and am out of development puberty stage. But I will keep hoping it will go away. I am 23 now....heres hoping!

Hi dear,
First off I must say how sorry I am that you give birth to your son and suddenly, raising a child is not the most trying thing in your day. That is definitely hard to swallow.

I was diagnosed with POTS in highschool...sudden onset. There was no official cause but I was passing out or "blacking out" as you have said. At first it was any time I stood for more than a few minutes, up to six times a day. The doctor prescribed medicines but they only made it worse.

I came off the medicines and began to deal with POTS in my own way but that did not do much for me either. Now I am struggling because I have lost four jobs over this. I black out often and like you said, there are warning signs, normally I get suddenly hot and my vision blurs or I get tunnel vision only miliseconds before I lose consciousness. I have scared countless family members with this.

No one seems to understand how this affects your life. I am 23 and I was diagnosed when I was 17. I have been trying to live a normal life all this time and failing miserably. I just don't know what my next step will be.

I am interested to hear what your doctor says when you go in to see him. Like you, I wish there were a cure to this. The symptoms are debilitating and there is no cure. You have to learn to change the way you life to accommodate a disease. It is aweful and unfair. I hope it is not that way for you.

Wishing you the best news possible.


Lauren

Hello, I'm not even sure where to start.
My husband started having heart trouble one year ago. After lots of tests and almost getting a pace maker.
He had a tilt test done and we discovered be has Pots Syndrome coexisting with Neurocardiogenic Syncope.
His doctors are great and are being as helpful and honest as can be.
They said to go ahead and prepare that because of the severity of both for the worst.
He hasn't been back at work in a month. The doctor said he won't ever be able to do what he did. (Hvac). And to also prepare that he may never work again.
My husband is 23 (about to be 24).
As you can imagine this has been a chaotic scary time for us.
As of right now he can't even watch our daughter.
It's like he just keeps getting worse and worse.
Really I would just like to get information and support if I can.
Right now my husband isn't interested in this site. He has a good support at church though.

But, I feel like the spouse needs just as much support.
I want to make sure I'm doing everything I can for him. I want to know what will make it easier or less stressful for him. Etc.

He was the only one working I was a SAHM. So I am enrolling back in school to finish and work to take care of us. I think we may have to put our daughter in daycare because we are both afraid he can't take care of her when I'm not there.
The doctor made it seem like we should look into long term SSI disability.
We already did the paper work for short term.

It breaks my heart for HIM at that thought. That he will be on disability.
I don't care about supporting Him and providing. I would do anything for him. But I know this makes him sad.
He loved providing for his girls.

So any advice would be great.

My email is: laurenhicklin @ me.com

I will try to figure out how to get bak here in case one of you replies. But email is a good correspondence way for me.

Thank you for everyone that has shared the stories of your lives. It's been so informative.

I can feel for you, I was diagnosed when I was 35, have fought with it for 8 yrs now. Seems to be getting a little worse, never know if it is going to be a good day or a bad day. I have given up dating after a divorce as I feel as if I would only be a burden for someone not being able to do everything when they want to do them. Yes it sucks, just hoping for the best. I just went in again for IV fluids which seems to help for a little while. I went with only the high salt, high fluid route until finally this year the doc made me go on meds. Im sorry to hear anyone else has to suffer through this. My best to you!
Dan

I was first diagnosed with POTS at 16 this was after having it for two years prior. Now at going on 22, I am functioning fully and like every other person. Yes, I have my bad days but I can do almost everything that everyone else does. Most days that means I have to talk my way through feeling good. Drink LOTS of Gatorade 2 and try to do a little exercise mainly legs. Even though I know that's the hardest thing to do. When you start to get dizzy put your fingers in ice or ice water and pull your legs up, this makes a world of a difference! Okay now here is the biggest part of all! I now go every 4 to 6 months to get two fluid IVs this keep us hydrated and will be your best friend. It will all get better dont worry! Just be blessed that its not going to kill you!(which I know it feels like it might some day ;))
If nothing works take small doses of Lorazepam
If you have any questions feel free to ask

Thanks for responding to my post. I'm glad to hear you have been able to make improvements with yours and do so well with it. From all the research I have done there may be even more hope for you. It is said that most people who develop POTS in their teens reach a full recovery by their mid to late twenties so there is a chance that you may be totally free of it in the near future. As for the advice, I do drink the gatorade every day all day along with lots of water. I have not tried the ice thing so I suppose it is something I could at least try. As for the IV fluids, it has already been an option but as a result of the numerous stays I have had in the hospital my doctor had said that it would not be of benefit because not only do I keep my self more than well hydrated on my own, but I had obviously received fluids during my stays in the hospital and it made no difference. Also, I was actually already on Lorazepem for a few years before my onset for anxiety, and my dose was increased and I continue to take it which is pretty effective as far as my anxiety. I am blessed that it is not essentially going to kill me although I do feel frightened at times that one of my black outs could result in a serious injury. I have not gone more than 5 days without a black out, which was actually the only time I went that long, but on average it is only about 3 days. Alot of times my bad days result in 5 or more black outs and usually my bad spells last 2-3 days with black outs each day. Thankfully thus far the only injuries I have had were a cartilage contusion in my nose, 2 bloody noses, a bloody lip, and numerous goose eggs on my head. But I worry about hitting my head on something or falling down the steps. I also worry for my son. I am afraid of blacking out while holding him. I do have someone with me almost all the time in case something would happen and also to carry my son up and down the steps and anything else that is too risky for me to do with him but I still worry and there are some times when someone can't always be here. My husband suggested seeking a private care companion for long term so that it is assured someone will be here and also because it has been his family members helping but they can't do it forever. The things they have to do to make it possible are just difficult. Many times already someone has had to call off work just so I would have someone here. But they are willing to help as much as they can. In fact, they have took it upon themselves to do research on their own and found a few things they think I should at least try and they would take care of anything I need to do so. One thing they found was a doctor in Ohio named Dr. Blair Grubb. He is said to be one of the most specialized doctors of POTS but some of the downfalls are that it is difficult to get on the list and if your fortunate enough to do so there is at least a year long waiting list just to be seen, a deposit required to get on the list, it is out-of-network for insurance and would result in a substantial amount of money, and of course living in PA would require lots of travel, which is not a real big issue but not being able to drive myself makes it bigger than it would be. Furthermore, doing my own research I found that his "success" is based on a mix of successful treatment and simply teaching a person ways to live around the POTS as best as possible. So it makes for a difficult decision because I'm not sure I could mentally handle waiting such a long period of time and spending all that money just for some doctor to basically make me "happier" with my condition. In any case, it is still on the consideration list. Another thing we found was the Biotronik pacemaker with CLS functions. Some of the downfalls with this however is first finding a doctor who can and will treat you, the cost once again, the obvious risk the actual treatment involves which with this specialized pacemaker typically additionally requires numerous adjustments to fit your specific needs, and probably travel as well. Additionally I'm not sure I even understand how it works and by the sounds of it patients still had to have a successful treatment for the blood pressure in addition. So basically it is as if it is successful with controlling the heart rate but if the drop in blood pressure can't be controlled as well than someone in my situation would not benefit much at all because essentially the low blood pressure is what causes the black outs. My logical thinking would make me think that in reality it could make things worse because if my heart rate is controlled not to increase the way it does but the blood pressure still goes low than I would be recieving no aid in raising my blood pressure at all resulting in more black outs and even less functioning time. But it is at least something I can contact a specialist about and see if it would even be an option for me. The final thing they found, and the least unlikely is a supposed "cure" in Europe. It has been said that there is supposedly a "cure" but it cannot get FDA approved is the US for ethical reasons. There are many downfalls to this, the first being that I'm not even sure if its even true because I cannot find much information besides mainly what others have discussed in forums related to POTS. If it is even true I'm sure the cost is outrageous not to mention the cost that would already be incurred from traveling, which of course would be another downfall in itself. Additionally, if all is true, it makes one wonder what ethical reasons keep it from being approved in the US and how safe it is. So these are a few of the things we found. Of course I still have the option regardless of what my doctor says, to see other doctors but as I said, the ones I have called already said there is nothing more they could offer and essentially my only options are to try something "out of the box" or extreme like the things I just talked about. So I don't know. I mean I will continue looking and consider what I find but as of now that is all I can do besides the things my doctor suggested. My main concern at the moment beyond the POTS is that I can stay mentally strong and focused. Maybe if I do that I can at least prevent giving up completely and regain some hope, even in a seemingly hopeless case.

How often do you exercise?

Well when I was cleared by my doc to exercise I began simple leg exercises while lying down which I planned to do every other day but when I get into a spell of black outs, I cannot do them. So with the frequency of my black out episodes, I cannot keep a consistent regimen. When I first started I got one day in before a black out episode began that lasted 3 strong days. I always additionally need a full day recovery after episodes so it wasn't until 5 days later that I could do the exercises again. At that point I decided on daily routines to try to get a good amount in. Unfortunately after only two days I had another black out episode which lasted 2 days. So this time it was not til 3 days after the last exercise until I could exercise again. So basically it results in maybe 2 days a week I can exercise, which seems almost useless, especially when it's also sparatic. I can't maintain a daily exercise regimen due to this. Got any thoughts?

Well, anything is better than nothing, even if it is only a few days a week. What do you mean when you say "a black out episode began that lasted 3 strong days"?

You might try physical therapy if you haven't already, I did this for two years and it helped do much! I too was unable to workout without blacking out, but with therapy you have medical assistance while working out so it's worth it! Also support hose help a lot as well, weird I know. I hope this helps!
Praying for you.

It means for 3 days in a row I black out numerous times throughout the day. I can blackout from the simplest things like just changing the position of my legs or turning my head. I never know when I am gonna black out so usually the first one occurs while I am up moving and have to sit to try to avoid blacking out but black out anyways. Than after the first black out it is like it makes me more sensitive so anything can provoke a blackout. So those are my strong episodes. On a typical day if I would stand completely upright I would blackout constantly. However if I walk with my body arched in almost a sitting position I can get around but I still have to sit frequently in between to avoid blacking out, which is successful on my good days but I do the same thing all the time and on my bad days I still blackout. Now some days I can blackout just once and that's it. So there is no true pattern really and no way of knowing when they will occur.

Hey all, just like you I "got" POTS after pregnancy. My life went from fulfilling to sucking butt overnight. The worst part is I had to go to er more than 47 times before they didn't dismiss it as post partum anxiety!!!! I have tried meds but because POTS has a mind of its own they don't work. I have become depressed and actually had one doctor tell me if I didn't cheer up I would be dead in a year. Well I am still here and still fighting. I do not have blood pressure drops but just the opposite. It spikes up along with heart rate. Let's see muscles twitches, dizziness, tremors, insomnia, fatigue from hell, and many more. If you want to talk it would do us both good because unlike other illnesses we can't get out to a support group. I feel so bad for my daughter she deserves a mommy who can walk with her and take her to the park and stuff. Anyway, if you want to chat send me a message. Thx.

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