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~Naomi~

How Are You Coping And What Is Your Outlook?

How are you coping now and what is your outlook?  

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Hmm, this is a tough one, Naomi! I wanted to say that I'm successfully managing my symptoms because I feel like I am while I'm in my own house, but outside of here, it's a bit of a disaster (requiring lots of modifications and recovery time) and most of the time I just don't have the energy to do it. In my heart I feel like I will get better, but I wonder if it's partly that I'm afraid to believe anything else.

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Good poll! Most of the time I feel like a ticking time bomb. I feel like how could anyone feel this way and not be dying, it scares me! I'm not doing anything currently that is helping, I am in the midst of trying to find a new cardiologist.

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I think now I have gotten to the point where I realize I am probably stuck with this for the rest of my life and that somehow I am just going to have to cope (I owe it to my son) :( my specialists have gone from telling me 1-2 yrs for improvement to benign chronic long term illness and the list of secondary issues keep getting longer. I guess I can handle having to live with this new life but what my personality doesnt allow is the not knowing why? I have to know the cause...its how my brain works.....I am a huge believer in cause and effect. I just wish more dr's cared about the why.......if their lives were drastically altered over a couple of years for no reason and to the point that they couldnt hold a job, friends or anything the slight bit fun or stressful, I bet they would want answers ;(.....sorry to ramble...bad day lol!

Bren

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I'm not totally sure where I'm at either. I have been in the midst of this bad flare since about February. I have only seen things get worse so far. I've been on Mestinon for about 3 weeks now and haven't noticed a whole lot of improvement. I get random times where I feel okay, but the minute I try to do be up and moving to get things done it comes right back. I'm getting nervous because I've been off work since May. I only have like 3 weeks of 100% STD left. I have a feeling my occupational med doc is going to have me try to work again next week. It did not go well last time. I toughed it out for a few days and then went downhill fast and couldn't even sit up at a computer for more than 2 hours. If I can't work and have to switch to LTD, the pay is only 65%. Granted it's way better than nothing but we are already in a tight spot financially. I don't know what we're going to do honestly. My husband had cut back hours last year at work to restart school because I was functioning pretty okay and we thought I was improving. He can't do school now because we're not even sure if I'm going to be able to work in the near future. The only thing that keeps me going is knowing out families won't let us end up on the streets. So my optimism varies from day to day. I think I have altered my expectations of 100% recovery (especially since EDS is most likely what caused POTS for me) but I would just like to get to a point where I can have some semblance of my old life back.

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I think now I have gotten to the point where I realize I am probably stuck with this for the rest of my life and that somehow I am just going to have to cope (I owe it to my son) :( my specialists have gone from telling me 1-2 yrs for improvement to benign chronic long term illness and the list of secondary issues keep getting longer. I guess I can handle having to live with this new life but what my personality doesnt allow is the not knowing why? I have to know the cause...its how my brain works.....I am a huge believer in cause and effect. I just wish more dr's cared about the why.......if their lives were drastically altered over a couple of years for no reason and to the point that they couldnt hold a job, friends or anything the slight bit fun or stressful, I bet they would want answers ;(.....sorry to ramble...bad day lol!

Bren

Bren:

This is the place to vent! We all have those bad day where everything seems hopeless and it is on this forum where people understand what you are feeling.

Hope tomorrow is a better day!!!

Pam

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This is a hard one to answer. My feelings towards it change. Sometimes I feel like im totally gonna beat it and then there are times when I feel I need to make better strides toward acceptance because I'll deal with this forever. I also know I have EDS and that doesn't go away, can POTS go away when you have EDS? Idk, different people say different things.

I know as of late I've been a little down bc it seems like my progress is stalling some.

My dr tells me that I am the same girl I always was and ill be able to do everything I did before. I'm not sure if he means cure or just getting by. It's all confusing really

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I am under control with meds, but I am still wondering how this happened. I have always been a person who needs to understand. Byt he grace of G-d, someone mentioned OI to me which set me on my discovery of POTS, thanks to this site. I have educated my doctor about all I have learned about POTS here. I think she still suspects its psychological. The one POTS "specialist" I went to told me that I don;t have POTS based on a poor man's tilt while on meds. So I don't have any medical professionals supporting me in my search for answers. I am hopeful that either the meds + time will heal me, but am trying to accept that this may be it for life. I am hoping that this site will clue me in when there are any breakthroughs in research, but I don't honestly believe it will happen any time soon. Sometimes it is depressing and I worry that the underlying cause of this will erupt one day in another way that I won't know how to deal with. Before I started the meds, I felt so ill all of the time, there was no relief! I worry what could come next. But I try not to think about it and just be grateful for each day that I can function.

Sorry for the ramble....it feels good to vent somewhere other than to my husband!

Abby

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I think now I have gotten to the point where I realize I am probably stuck with this for the rest of my life and that somehow I am just going to have to cope (I owe it to my son) :( my specialists have gone from telling me 1-2 yrs for improvement to benign chronic long term illness and the list of secondary issues keep getting longer. I guess I can handle having to live with this new life but what my personality doesnt allow is the not knowing why? I have to know the cause...its how my brain works.....I am a huge believer in cause and effect. I just wish more dr's cared about the why.......if their lives were drastically altered over a couple of years for no reason and to the point that they couldnt hold a job, friends or anything the slight bit fun or stressful, I bet they would want answers ;(.....sorry to ramble...bad day lol!

Bren

reading your sig i think i have many of the same probs as you , POTS, MCAD, neuropathy and EDS (awaiting testing).

I have a similar personality i think in wanting to know root cause. Have been tested for lyme and pushing for autoimmune tests but if they come up short not sure where else to look. i had a surgery which caused POTS for me, but the EDS underpins it.

have had this for about 2 years, TBH don't come on Dinet unless i'm going through a bit of a flare or having a bad week. reading everyone's posts just made me write a list of things i can affect and can't. i find this helps me cope, i write each problem down and ask myself am i doing everything i can in my power to have an affect on that problem and set an action if i need to. e.g.

Neuopathy - Sugars/carbs make it worse, action - reduce sugars/carbs

EDS - make a physio appt' ASAP

POTS - tilt head of bed further, increase exercise, stand more, focus on sleep, hydration

etc...

Once i'm satisfied I'm doing everything i can at that moment in time i try and accept it. Very very hard but you can only be stoic about it. What gets me down is being in a flare and wondering if/when improvements will come.

The one thing that has helped the most over the whole time i have had POTS is mindfulness/meditation. Was very dizzy @ work today, and then sat to meditate on lunch and it just seems to get rid of the dizziness and focus the mind. So useful.

I saw my POTS doc here in the UK a few weeks ago, his centres focus is on an immune problem being behind the symptoms of POTS. He will be working with a Neuroimmunologist soon on new research. His policy is to treat the symptoms of POTS and at this stage and not to over analyse causes of symptom's as they are related anyway. Not easy, but the science just doesn't seem to be there yet so have to trust the doc and for now try and treat the output.

stay strong everyone!

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Guest headhunter030

Haven't been here for years. I have resigned that I will deal with this forever. Stole my manhood, but I do live a pretty normal life; especially in the winter. The heat tolerance has progressed to an all time low; thought that winter exercise would help me with summer heat---barely last 2 minutes on hot day.

And BTW, hope all of you who I spoke with over the year are doing well; cant remember names. Bryan

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I question how much time I should spend looking for Doc's. As there are none in my area. Some of the folks here who have had autonomic testing, Qsart testing, autoimmune tests etc and who know exactly what type of POTS (hyper or hypo) or Dysautonomia they have are still very sick. I say that will all due respect as well. My point is - should I push hard to find a cause or just listen to my body and treat accordingly? I'm no longer interested in seeing another 'wrong' doctor as I've done that already. But i'm unsure the right one will make a big difference.

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Realistically, I do think I will be dealing with this for life. BUT, I also think that there is probably a treatment regimen that will ultimately work to give me a better quality of life than I have now and get me back to work and to my horses. I ditched the docs in a fit of anger a couple of years ago and tried to push through it alone but really that doesn't work in my case. There is a bigger problem than just POTS and we need to get to the root of it. I finally realized in Sept 2010 that I needed to start over with the docs and be my own advocate, because, frankly, no one was going to do it for me and I can't expect the doctors to care more than I do. But, this time around, I started out with the attitiude that any doctor that was inappropriate or condescending would be fired on the spot. I have been a customer service manager all my working life and I know exactly what good service looks like. I finally figured out that of all places where I should not put up with sub-par service, it was in my health care. Doctors are in the ultimate service industry (whether they realize it or not)! Once I took this attitude, things changed. I still had to go through a few doctors but I now have a team of docs that cares and is trying, plus they are also attempting to get me with other docs that they believe can contribute to the solution, which we are closer to than ever before. So, am I hopeful for a "cure"? No. However I am hopeful for a better quality of life (if I don't give up the fight.)

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Well I'm hopeful and at a point of acceptance. Don't know at 55 if there will be a cure in my life time for what is causing me to be ill. Don't want to count my chicken to soon either. I believe I am turning the corner and my new treatment plan of about 5 months has stopped the progression and has shown improvement in labwork and symptoms, still have a ways to go though. I am grateful that there are established treatments for each of the several underlying causes, take your pick as to which one or the combination of all of them are causing the autonomic symptoms. I feel lucky, because they could have found a disease state that wasn't treatable. So, I am grateful that they all are treatable. Without the treatment plan and meds I'm on now, my quality of life would have continued to decline, what I have like a diabetic will require treatment until my time comes.

I've come to acceptance that this will be with me thru my lifetime, but I am always hopeful that god or science might find a cure. Sometimes there is peace in accepting what is, is what is. Yes, I have fought hard for answers I now have. The fight to get those answers was very difficult, there were times I did give up, only to get worse and be forced to put on what I call my warrior hat and go fight for answers again. There are times that even though you do feel like crap, you just need to take a vaction from it and yourself.

Had I stopped seeking, I would be worse off, because everything I've found requires treatment to manage them. There was a point after many years of there is nothing wrong with you, that they found things that I'd never heard of and weren't even on my radar. The last autoimmunity diagnosed, I was like either I'm going to never stop crying or I'm going to just start laughing because at this point it is ridiculous, how many autoimmune diseases can one person have. I'm grateful to be past the worst of all that now. I am getting my joy back if not all my energy. You don't have to be well to be joyful.

I hope to continue to post reports of improvement, so you all have hope that it is worth the fight to figure out what is wrong. My hope is that all of you will get to figure that out much quicker then I did. Early treatment intervention would have kept me from getting as bad as I did.

So do what your heart is guiding you to do. What I do know for sure is that through my long journey god has had his hand on me and guided me. That everything difficult can have a silver lining and our hardship can allow us to help others.

Take care everyone!!

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I've eliminated the majority of my symptoms via diet and supplements but due to damage sustained from

leaky gut (eating the wrong foods, allowing bugs to thrive and heavy metals to collect) I'm not sure I can ever heal completely.

Also, I'm a celiac so my intestinal villi get damaged when I come into contact with gluten and it's freakin everywhere.

And my body over reacts to minute amounts of gluten by producing too many antibodies.

I'll never stop trying new treatments tho. I just started a serious parasite cleanse. Next heavy metals.

I'm optomistic some days but try to remain realistic. Tc .. D

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I don't think much will change for me.I will always keep trying to search for answers though. After many failed treatments/medicines, realistically I just don't see myself getting much better by man. I'm already going on 12 years with POTS and when I really look back and think about it, I've had signs of POTS since at least age 8. They just weren't as severe as now and I didn't understand it was abnormal to feel the things I felt. I thought it was normal!

I keep praying and I truly believe the only way I will be healed is by God. He's the only one who has the ability to take all of this away from me. :) Even if a doc has some treatment, it is still only a treatment.

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I go back and forth - if I take the most likely explanation (hypermobility syndrome plus Cymbalta-triggered SNS overdrive), then I know the root cause and it's not really treatable per se. Mmm, rather, it's treatable to manage symptoms but not in a way that would make POTS go away. Thus - dealing for life; sometimes I feel more optimistic, like I can continue to be independent and working (assuming lifetime medication, lifestyle changes, etc) and sometimes I'm more pessimistic.

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Guest headhunter030

I don't think much will change for me.I will always keep trying to search for answers though. After many failed treatments/medicines, realistically I just don't see myself getting much better by man. I'm already going on 12 years with POTS and when I really look back and think about it, I've had signs of POTS since at least age 8. They just weren't as severe as now and I didn't understand it was abnormal to feel the things I felt. I thought it was normal!

I keep praying and I truly believe the only way I will be healed is by God. He's the only one who has the ability to take all of this away from me. :) Even if a doc has some treatment, it is still only a treatment.

Yep coming up on twelve years, but looking back I had symptoms for 19. And I have to say I am a little embarassed to have a condition that seems to affect mostly women. Please girls dont take this the wrong way....just a litttle weird for me.

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headhunter, I bet this effects more men then you might think. Men and women may just have different ways of seeking information. I think you should feel good that your a man who is actually seeking help and support. I come from a generation where men where suppose to just suck it up and never show weakness. Many man never seek medical care even when they need it.

So good for you that your here, we do have some great men on the forum who really add to the discussion. All the guys are welcome here. It really isn't just a female issue.

So welcome back!

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Guest headhunter030

headhunter, I bet this effects more men then you might think. Men and women may just have different ways of seeking information. I think you should feel good that your a man who is actually seeking help and support. I come from a generation where men where suppose to just suck it up and never show weakness. Many man never seek medical care even when they need it.

So good for you that your here, we do have some great men on the forum who really add to the discussion. All the guys are welcome here. It really isn't just a female issue.

So welcome back!

Point well taken thank you.

" I come from a generation where men where suppose to just suck it up and never show weakness"

Haha your right...believe me, I tried

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Well, I came from a family with many kids, so everyone had to be strong, boys and girls alike...lol...so after 13 long years of debilitating health with very strange symptoms, and coming close to having several car wrecks, it was definitely time for me to get treatment. I found wonderful doctors in Birmingham, AL, but have done my own research, constantly for years for myself and others, being a nurse, and desperately wanting to figure this illness out. I even looked up dysautonomia before being diagnosed...but I had more trouble with hypertension, so since dizziness/vertigo were my main issues at the time, I found an ENT on the internet, who without me knowing, did a thesis on Autonomic vertigo, and the rest is history. I have 3 other doctors, that I was referred to, am receiving good treatment, but am always searching for a reason and a cure. My faith in God, medical knowledge, DINET, perseverance, exercise, supplements and medication all have made me a lot better over the last year. I have accepted this as my "new normal", but I will always fight the good fight, and if it is God's will, I will be healed; if not, I will continue to help others and receive my ultimate healing in heaven... :)

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Since I have been suffering for the past almost 5 years now ,but had signs of a condition for the past 15 years I've had many ups and downs. I constantly search for more answers I have never had a doctor with a plan to find out the possible cause, I always have to suggest testing for random causes and that gets pretty frustrating and that leads me to give up and take a break from doctors....I recently got approved for disability Medicaid so I no longer require referrals which will be more helpful since the referral process takes so much time and it takes away the limited doctor selection. So maybe now I can find some more answers ;)

I now realize that if I ever get better its up to my higher power, I also realize that I truly do suffer from major depression and anxiety disorder and that mixed with POTS is pretty confusing. I only wish that we would all wake up healed tomorrow, I don't post much anymore guess the depression had taken hold of me but I come to read here all the time one thing I know is we are some very strong individuals and pretty intelligent too!!! I just can't see us not recovering we have so much to offer , and I always think if we only get a chance it will be so wonderful. I hear alot of people on here being successful despite how they are feeling and that is great I am awaiting that day.

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After 12 years of this life changing disease, after traveling all over the US and spending thousands of dollars to get the "best" treatment" I'm pretty realistic. As one of those research doctors told me not long ago, "eventually, we will get there, but the research is so far away a this point, so not in your life time I'm afraid. The best we've got right now is trying to manage the symptoms." I think I will continue to have bad flares and then remissions. One day I would love to be able to sit normally again so I could go to a movie or eat at a restaurant...or my dream, to be able to read books again.

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I have given up looking for a root cause because I don't think it's possible to find it here in my country. I am unsuccessful with managing symptoms (though there have been short periods where they have been much more tolerable over the past 2.5 years).

Some days I feel very positive that my body will heal itself anyway, over time. Other times I think 'this is it now, for the rest of my life'. I do not let myself dwell on that thought though because it is unhelpful and nobody really knows what will happen. I could magically start recovering tomorrow. :-)

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Ah. Brave and lovely people, it is a tonic to read what you have written. You all inspire me and make me feel like this road is no lonely path, even if it feels that way sometimes. Just sharing the road with you guys is really helpful to me.

i can trace my symptoms back to 11 years old... so there has been weirdness now for twenty seven years. I have had periods of 'normality' but right now it's not so 'normal'. I feel very sad for my family sometimes, and very scared for me sometimes too. However, my recent success with Mestinon is giving me real hope. I need this to work on every level!!!

Here's to us. We are pretty amazing really! Shame the world doesn't always see that, but just quietly, we rock.

;)

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