Future Outlook?

[thechick]

Hi, I am a 44 year old woman who the doctors now believe suffers from POTS. I have to say Im amazed that it took them this long to even consider it given my symptoms. Friday I had an ablation done to attempt to solve the problem of Inappropriate Sinus Tachycardia, and needless to say it didn't work. Upon waking up from one of the most painful and scary procedures i've ever had they informed me that they now understand whats going on, and are scheduling me for a tilt table test in one month.

I also suffer from the worst case of IBS they have ever seen, and go through what can only be called intense labor pains for 3 hours every morning of my life, can't walk straight due to improper balance, have severe lower back pain from scoliosis and a rotating tailbone, have diagnosed nerve damage causing numbness and tingling going down both legs, osteoarthritis, and lately have been having a problem with concentration and have not been able to perform my job effectively. I am a manager of a retail store.

I have had a problem with tachycardia off and on most of my life, however in January, 5 days after having bladder surgery, it took off landing me in the hospital for 4 days, and hasnt slowed much since. most drugs didnt work, and the one that did, I had a bad reaction to, so medication isnt' much of an option for me. I can't even take an aspirin without it causing my heart rate to reach 150.

Heart rate is in the 90's while resting, and jumps to 129 upon standing, even more when I move around, and will go as high as 170-190 bpm. needless to say, I'm short of breath all the time, light headed, although I have not yet fainted, suffer alot of nausea, and really don't feel like getting out of bed anymore.

I have a wonderful understanding boss, who has been very patient with me, and I know will never fire me due to my illness, but I have a responsibility to the store, and if I am not going to improve significantly, then I need to step aside and allow him to find someone who can do the job, and be there everyday, but I dont want to lose the job if I am going to get better. This has been going on long enough and I need to make a decision soon.

Can anyone tell me, realistically what to expect in the months/years to come? Im thinking that if it weren't for the IBS attacks every morning, that maybe I could have more control, but starting every day in this much agony will only make the POTS problem worse, thereby giving me not much hope of improvement. Is anyone else going through similar problems?

[calypso]

Hi, and welcome to the forum. I think you'll find many here who suffer the same symptoms you do -- there are a select few who get to have fun with the GI problems, and I'm sure they'll be chiming in soon. Some here have low BP that leads to the tachycardia, while others have a more hyperadenergic variety of POTS that causes spikes in blood pressure (highs, lows) and anxiety-like feelings. (The latter is more like what I experience.)

I have the tachycardia and shortness of breath you describe, as well as nausea and fatigue. Have you been seen at a major medical center that understands dysautonomia and POTS? That would be your first step. Here's a link to a list of docs who treat these conditions: http://dinet.org/physicians.htm

Many here take beta blockers, some take antidepressants, and others use diet/vitamin supplements/exercise/meditation (more natural approaches) to get better. Some things work wonders for some, while they might not help others. You have to find what works for you. I am still finding my groove right now with treatment, but I am only a year and a half into this illness, so I'll let those with more experience add what helps them.

Good luck and I hope your issues improve rather than worsen. Being diagnosed correctly is a good first step.

Amy

[Miriam Poorman-Knox]

ps CANT THEY GIVE YOU SOMETHING FOR DIAHREAH?

TAKE CARE MIRIAM

[Miriam Poorman-Knox]

THE FIRST PART OF MY REPLY GOT LOST!! YOU ASK IF THERE WAS HOPE? ABSOLUTELY< AS WE ADJUST OUR MEDS AND TRY NEW THINGS< THING WILL CHANGE> REMEMBER that there are many meds for cardiac problems< but there are medicationd for other diagnosises that are lifesavers for some of us with pots

REMEMBER "WENEVER CLOSE SOMEONE IS ALWAYS HERE" SO IF YOU NEED TO TALK OR VENT WE ARE OPEN THERE ARE ALSO LINKS THAT MICHELE HAS COMBINED ON A SITE THAT YOU CAN READ ABOUT MANY OF THE THINGS THATYOU WILL HAVE QUESTIONS ABOUT MIRIAM

[morgan617]

I had ablation in 2003 and it was the worst. If they want to go in again, please think about it long and hard. My heart rate has gradually come down, but now I have no way to compensate for my other symptoms. Before my ablation I had 8 hours of tachy on my holter, 1 being normal. After I had 16 hours. Now it it can't go up so I just have tons of arrythmias instead. I am sorry you are having such a rough time. Someone is sure to chime in on just about everything you talked about. Does your BP flucuate a lot? Sorry, talk about cognitive problems, I can't even remember if you said you did.. Anyway, welcome, hope you can find some answers on here, you will at least get lots of support! morgan

[Ernie]

Hi,

Welcome to the Forum.

Many go back to their normal life with some adjustments and some others like me have to completely change their life. It depends on the etiology of your disorder.

Ernie

[opus88]

The only hope - and relief - I have found finally came about when I stopped going to and listening to doctors. My improvement has been from diet and whole food supplements (not the junk supplements found at most stores). I was nearly bedridden 3 years or so ago. Although I work hard at it every day, to the outside world it now appears I live a normal life - and I work a full-time-plus job and 2 part-time jobs and I'm now taking a couple of online classes, too.

A few things stand out as major factors in my improvement (magnesium lactate, vitamin B6, GTF chromium, and the Metabolic Typing Program), but I know that many natural and/or alternative things have benefitted me in many ways.

Keep an open mind. Do your research. Try anything and everything that seems plausible and feels right. Above all, never give up hope.

[tammyokc]

Hi there, I can totally relate to your work situation as well as a lot of your POTS problems. I am in the same boat right now work wise. I work at a college that I LOVE! I am only 30 and started there when I was 18, so I've worked there almost half my life. I have been sick the whole time, I just didn't know it was POTS until 2 months ago. I just lived with my illness and white-knuckled work everyday. But 3 years ago, I woke up with uncontrolable heart palpitations and anxiety and have never been able to make it go away. I went from full time to 75% time and worked for another 2.5 years like that and finally on Jan. 18, 2005, I had to take a leave of absense (it's been over 2 months). I am still on leave and I just don't see myself getting better, and I'm trying to decide right now whether I can go back to work or not. I feel horrible they are keeping my job for me. The guilt is overwhelming. I want to return so bad, but in my heart I know I can't right now. I want to tell them to hire someone else, but my hope is that I can go back soon and so I'm selfishly still trying to get better fast!!! It's a tough place to be in. I have to think of my health insurance and income that I'd lose and I'm scared I won't be able to get disability so these are other factors. Ho hum.

I can't tolerate any meds. either because they all send my heart racing. I have tried several beta blockers (nadolol 5 mg), (Atenolol 25 mg), (Inderal 2.5 mg), Midodrine to raise BP - 2.5 mg , Florinef .1 mg...and nothing has worked and these are at very little doses. And when I say they didn't work, I mean they made me worse!!

I also 2 yrs. ago went on an organic, sugar free diet and took the most expensive and "best" vitamins out there. I researched and read books and watched health shows and still nothing seemed to work for me. I have a lot of GI probs. also and take some probiotics (Garden of Life - Primal Defense) but it doesn't work most of the time. I stay majorly constipated! Do you have diarreha? (sp?) Sorry to be so blunt!

So....all I can tell you is to try not to panic, give it some time (even though you don't feel you have any), trust in God, realize that the world won't end if you can't go back to work even though it feels like it, and keep your faith and hope high that one day you will be better! Lots of POTS patients have some bad years but eventually can lead somewhat normal lives. That's what I'm hoping for!

What's so hard about this is you have to go through a grieving process (and mine hasn't even fully started yet) but I know that I'm going to have to soon grieve the loss of the life I knew health wise and then grieve the loss of the life that I knew as a working, contributing citizen. I also feel guilt over not being a full-time wife and able to do the things a wife does and it can get very overwhelming, but as everyone says on this site...we have to just keep pressing on, do the best we can, be nice to ourselves and enjoy our good moments, trust that one day we will all be better and stronger people for having gone through this.

Trust your heart and try to let go of the things that are beyond your control.

Thinking and praying for you...

[thechick]

Thanks for all of your replys. As to your question I have severe constipation with diareah. I know it sounds strange, but I dont know how else to describe it. It starts as constipation and hours later it turns into the other. Im in absolute agony the whole time. Great way to start the day.

I've been watching what I eat and have been resting the last few days since the ablation, took the week off work to regain some strength I had lost the last 2 months, and for no reason again today... BAM... heart rate 270, chest pain, and I cant catch my breath.

I totally relate to the reference to the grieving process. Thats exactly what this calls for. Im still somewhere between denial and anger, not accepting what has happened to me yet. It really hit home when I awoke in the hospital and had not yet opened my eyes, and heard my father in tears asking why, hadnt I suffered enough? Knowing what this is doing to my family is also tearing me apart.

So, Im not the only one who can't be a good wife, and do the things a wife should be able to do for and with her husband? I can't say that makes me feel better, but I guess I dont feel so alone. How does your husband deal with this? Mine just avoids me and keeps himself busy. He says hes numb to my health problems, and it's just nothing new, so he can't help but be insensitive. I say it's a cop out, and if I cant depend on him who can I?

Thanks for giving me an opportunity to vent... and a place to talk to people who truly understand.

[tammyokc]

I have that too! I call it alternating constipation and diarreha but I don't have the severity like you speak of! I am so sorry!!! I have horrid constipation for days then the diarreha for a few hours then right back to constipation.

Yes, I wish I could help more with the physical problems you have and offer advice but I can only tell you mentally what I'm feeling and hope that helps. I also don't know that I ever will accept this. I am bitter but for the most part I have to know this life is but a stepping stone to my real life. I don't know if you believe in God, but He is what gets me through even when I am down right angry. God can handle your anger, depression, bitterness, and devastation, He is a big God! And yes God allows our suffering and could take it away in a second and heal us, but since he hasn't (and he might you never know) I have to believe this is all for a greater purpose that we won't understand until years later. So I keep my faith and hope alive.

I too feel like such a burden on my husband and parents even though they couldn't be more helpful and WANT to help. I always wear myself out trying to pretend nothing is wrong but I always pay for it so I am trying to get better at letting them help. I'm too sick to pretend much lately. My parents wish they could take this from me and they hate seeing their little girl suffer, even though I'm 30!!!!

About my husband, I think he too gets numb to my health problems but that's cause I've been sick so long. But he is never insensitive. My husband has told me several times when I ask why he doesn't get as upset as I do anymore, that it's just too hard on him to go to that place. And if he were a crying, sobbing, bitter mess than who would keep us afloat when I can't find my smile and going through my darkest days. So I think whoever our partner is....they have to come to some comfort level with it themselves. I am very blessed that I have married a sensitive Christian man and he knows that I am a tornado when I feel well (getting things done) and very highly motivated so when I am this sick, he knows it's not my choice and I that I hate it more than anyone! On the other hand, I have always been able to have some good days and be me again a little. I just hope since I've been feeling bad for so long now and the "real" me hasn't surfaced in awhile, that he will continue to be the same great guy!!! I'll let you know if he changes!

I think we have to try and give our husbands a break. This isn't easy on them either and men just aren't as good at expressing themselves as we are. My husband works from home and can get lost in his work and it's a good escape for him and I'm glad, but then I can get resentful because I can't escape this!!! But it's just as unfair to him as it is to me in a way. Neither one of us asked for it.

If you can't get the sensitivity from your husband at times, call your other family members that love you unconditionally! That helps on really rough days for me. I always want my mommy! And some always want their dads or their kids. And for those that live alone, they find someway to have the strength to get through. We all have to play the cards life has dealt us and even though ours may not be the easiest, it's all we've got, so we have to stay positive and be thankful for the health that we do have.

Not sure that I helped any.... Just please never think you are alone cause you are not. We are all here for each other...

PS: I may sound positive and like I'm handling all this really well...truthfully I'm just as devastated and scared as heck that I won't be able to return to work and everything everyone else is worried about. It's always easier to give advice than to heed it!

PPS: And if your husband is just one of those jerks we all hear about, I'm sure others on this site can relate and give you their side of the story!!

[Miriam Poorman-Knox]

thechick,

I take it your husband has no weaknesses, illnesses, or tiredness or anythins we deal with!!!!!!!!!!!!!!!!!!!!!!!! He is insensitive to your needs, but aren't all of our supporters at some time? There is a book Sacred Contracts, if you can read this it really helps put life and its potholes in perspective. If you can't get it I'll mail it to you. Remember this is the beginning again. Last year I spent 3 weeks on life support/ventilator. Lost 50 lbs. etc.... Felt totally useless, yet as days and weeks came and went and I started to feel better, medicines came and went and I got worse then better. I think of it as the circle of my new life.!!!!!!

Blessings Miriam

[thechick]

Tammy, everything you have said really does help. I know this isn't easy on my husband, and he copes the only way he knows how. He gets so angry and frustrated that he can't fix it, he has to walk away. And yes, I sometimes get resentful because I cant walk away. I too need my "mommy", and she has been an absolute blessing. In the mornings when I am going through the IBS attack, and am in so much pain I can't even speak, just cry, I call her and she talks to me until it is over. We discuss everything except my health, and she tells me stories about her childhood, and gives me something to focus on other than the pain. She's 70 years old now, and after a really rough relationship growing up, I can now say that she is my best friend. I thank God she is so healthy and strong, and pray she stays that way for many years to come.. i dont know what I would do without her.

My kids dont understand. Mom has been sick their whole lives, so its just part of life for them. Two of them are manic depressive and incapable of much comfort, but really all i need are their hugs and kisses, and they do give me that.

I have called and spoken with Social Security and found that I can work part time and still be eligible for disability if my income is below $840 a month. So I am going to talk with the boss today and discuss the possibility of me going down to part time with a salary just below that. I should be able to go into the store and take care of the office work and all of the website work that I do can be done from home as I feel able. Im sure he will approve as his biggest concern has always been my health.

Miriam, thank you for the suggestion. I will be picking up my paycheck this morning, and will stop at the bookstore on my way home if Im able. Or maybe visit Barnes and Noble from the computer once I get home. Im looking forward to reading it.

One good note, I have been leaving the browser up on the computer with this forum, and found my husband reading it last night. Hopefully he will get some ideas on how he can help because I really believe he wants to and just doesnt know how. Do any of your spouses have suggestions for him?

I know that right now I am not in a place to be of much help to anyone else, but I want to thank you all for your help, kindness, concern and prayers, and please know that if I can ever be of any help to any of you, I have a shoulder to cry on, an arm to lean on, an ear to listen, and a heart to care.

God Bless,

Karen

[DSM3KIDZ]

All of this is hard for my husband too. My husband bottles up his emotions and don't get a chance to vent (I try to let him). I've been sick for 7months and I used to run the house and was the decision maker etc. So for the past 7months he has taken over my role with keeping up with our 3 kids (6,3,&1)and the household. I think that keeps him so busy he doesn't have much time to think about what is going on. He's there to comfort me and catch me when I break down. He thinks this is just going to pass. He's just an optimistic thinker. I hope it does for all of us and our families but for now I just try to help around the house as much as I can. He said he will support me 100% as long as I show I'm making an effort (even if it's small) and not giving up. I felt like giving up a month ago but than God sent me 1 really good day where I felt 100% normal NO NAUSEA! and it made me realize I need to hang in there. That maybe someday I will feel like that wonderful mother, wonderful person, wonderful wife again not just a sick blob

Hang in there

Dayna

[EarthMother]

Ok everyone listen up!!!!

I have used this as my screen saver, taped to my mirror and as an index card in my purse. Comes in real handy.

I know it's easy to fall into the blame game ... I spent all of last night and this morning crying because I hate not being ME -- or is it that I hate the ME I've become. Either way, we really need to stop and cherish who we are ... right now. Sure I can't take the kids to Disneyland, but I can roast marshmellows in the back yard ... I can teach them how to make bread (thank goodness bread takes so long to rise!) I am not that trophy wife I wish I could be for my husband ... but I am warm, loving, funny even when I am flat on the floor.

Remember how gifted each of you are just as you are right now.

(oh and remind me from time to time ... because clearly I forget as well.)

Salubrious!

EM

[tammyokc]

Well AMEN Earth Mother. I needed to hear that! I hope everyone reads it. It is so true! We waste any spare time from POTS (is there any of that though really! ) blaming ourselves for what we can't do or be or feel like and we have to try and saver the little moments and accomplishments we can do. I give myself a gold star now when I can go get the mail at the end of my short drive way!!!!

We aren't weak or crazy or lazy, we are sick and trying to deal with a disorder that we didn't ask.

Thank you for this post!