Losing Hope

[houswoea]

Hello friends,

I used to have a lot of hope that things would get better for me. But I'm nearing a year and a half since I first got sick and there's not much left. Things seem to get worse and worse, and I lose more and more... I can't have a job, I can't go to school, and I have seen all the doctors I can see to figure out how to make things better.

I know there are many out there with similar stories, but much longer experiences! Some of you have been dealing with this for years and years!

So please, somebody tell me a story about how things get better... how they found the right doctor and how they found the right treatment and how they can live on their own or live with roommates who are not in constant fear...

hope never fails, and even if I never get better than this, I know there is a reason and that I will impact lives. I just want to hear about overcoming this hardship... please?

[jonathanireland]

Hey it sounds like you have good hope already so hold onto that and dont let it go. There are some great success stories on here and im sure your going to hear of some so keep faith in medicine that autonomic dysfunction is becoming more and more recognised every month and doctors are working hard somewhere to find new and excisting treatments to help us live normal lives or even more comfortable ones anyway. Theres always hope a story I once heard on here was about a young girl who was wheelchair bound, her parents and foctor tryed all the usual treatments beta blockade, fluid retension drugs, Midodrine ect...ect!, and then they found a drug called Octreotide, anyone who knows me here on the forum knows im fanatic about this drug and I am hoping on tuesday I will be given the chance to try this drug myself, so anyway the moral of the story goes that the young girl tryed this drug and almost instantaniusly she was 90% functioning as apose to being wheelchair bound and not being able to stand. So for anyone who has wondered thats why I hold so much hope for this drug, and other drugs out there like this who have given Pots patients back their life and now their stonger than ever. So if anything I hope you get a little insight into my hope for salvation from the cold dark world that is Autonomic Dysfunction, and never forget your never ever alone so if ever you do just come on and vent we will always listen and offer some comforting words of wisdom.

Your day will come when you find what right for you.

[Ashelton80]

Go read potsrecovery.com. She just posted a new one yesterday. You can read starting from January when she was really sick to now. She is living a normal life. Personally, I don't put my all of my hope in drugs. If I did I wouldn't have any hope left. They have mostly been huge failures. I am starting the protocol tomorrow. Good luck!

[maggie]

I have been struggling with pots for five years now and have been up and down with this battle. I would be able to get around and then something would come up again and put me back in bed. I was told by my doctors that in my case I would surley see a complete recovery, but that has not come to be. I saw on the bottom of you post that you have faith in Jesus Christ. He's is the one you need to go to at this point. Give all your worries, sickness, and sad thoughts over to Him, lay them at His feet. When I struggle with the very same issues as you I find a verse in the Bible and grab on to that and hold fast. Pslams 57: 23, "Give your burdens to the Lord, He will carry them. He will not permit the godly to slip or fall." Psalms 57:1,"O God, have pity, for I am trusting you! I will hide beneath the shadow of your wings until this storm is past." The last verse is Psalms 73:23, "But even so, you love me! You are holding my right hand! You will keep on guiding me all my life with your wisdom and counsel; and afterwards receive me into the glories of heaven!" My final thoughts to you are even if our lives here on this earth our plaqued with this illness to the day we die, we have eternity, never again will our bodies fail us in heaven. May God walk by your side during this trial, I'll be praying for you.

Maggie

[shannon]

Hello,

I am so sorry to hear that things are tough for you right now. When I look back, I can remember feeling so hopeless, so frustrated, and so tired of being sick. The notion that things could get better seemed unrealistic back then. But things have truly improved for me. I was diagnosed with POTS almost 10 years ago. At the time, I weighed less than 90 pounds, and every day was a battle. After I was diagnosed, I tried multiple treatments before I finally responded well. It took some time, but now I live a very normal life. I work full time, and I even have energy to volunteer outside of work for various programs. I still have POTS, and I still need to be careful about keeping a regular sleep schedule, eating on time, not standing for too long, etc, but these adjustments have become so much part of my life that I barely think of it on an average day. I know there are others who have not shared my experience and I will never understand why some of us get healthier and others don't. It's not fair. But in response to your post, I wanted to share my own story of recovery. I have even grown to have a love/hate relationship with POTS. When I think of all I went through, of course part of me wishes that I had never gotten sick. But at the same time, now that I am healthier, I know that POTS changed me for the better in some ways. I am a more compassionate person. Now, anytime friends or family share about health problems they are having, I know that I can be one of the few who does not respond with discomfort, but instead genuine care and interest. And that is a gift. That is maybe the tiny gift in all of this.

I have hope that things get better for you. Take care!

-Shannon

[lissy]

I have had symptoms for at least 15 years but didn't become as ill as I am now until 2 1/2 years ago. 2 1/2 years ago I felt constant brain-fog and so fatigue without hope or motivation. My thinking is becoming clearer and I do have more mental motivation, I haven't tried any medications as of yet, I have tried to allow my body to naturally heal. I know too much activity , stress, and not eating or drinking right sends me into a downward spiral and its hard to get back balanced. I wish someone would post all of the conditions we should be tested for that could be possible culprits or actual conditions that cause or mimic dysautonomia and that might help some people get more accurate treatment.

Never lose hope or faith and if you come to realize that this is something you have no choice in and no matter how upset you allow it to make you, that actually will make you worse off a positive mind is the only chance for healing.

We all go through the stages of anger, grief, denial, depression and acceptance over and over again and once you feel like you accept something you can feel defeated honestly changing your mindset to this process is the best thing you can do (Mind over Matter) is a fact, become blessed for what you can do and what you do have and try your hardest to keep that concept no matter what.

I would admit I haven't had much recovery physically but mentally I have and I am glad for that because depression can consume your life in every way. Sending uplifting prayers and healing your way:)

[Guest tearose]

When things get hard as you describe, it is time to take things in smaller pieces.

Try to focus on just one thing and appreciate all you can about it. Find joy in small things.

When you have a flare of pain or troubling symptoms, then focus on that pain. Don't deny what is there, just feel it and figure out what you can to deal with it.

The only wisdom I have to share after 19 years is that it helped when I changed my expectations of myself. I did not "lower" my expectations, I changed them. It made me deal with my sense of self. I was a different person after pots/dysautonomia.

Maybe I can't work at a job but I can find a way to do other things for the community or my family. I no longer have a house that is always neat and tidy but I do my personal best. I may not be able to entertain in my home but I will meet a friend at a diner for a cup of tea.

There are blessings in all of life's challenges. Finding your spiritual path or practicing whatever helps you find your "center" will be of greatest value as you walk this journey. The greatest joy for me has been that sense of 24 hour "help" from a Divine source. Having people here at DINET has been a close second blessing and then supportive friends and family are also a blessing.

Sending you support and hugs,

tearose

[icesktr189]

What took me from being bed bound for over 8 months, loosing 30 pounds in a month and almost suicidal from being so sick was Lexapro. Dont dismiss an anti depressant because its used for depression. It made my POTS almost go away. No i was not back to normal, but i went back to work and school! It saved my life. i would advise you to give it a try :]

[lissy]

What took me from being bed bound for over 8 months, loosing 30 pounds in a month and almost suicidal from being so sick was Lexapro. Dont dismiss an anti depressant because its used for depression. It made my POTS almost go away. No i was not back to normal, but i went back to work and school! It saved my life. i would advise you to give it a try :]

Have to add to that about 7 years ago when I was having alot of bizarre symptoms and got DX'd with anxiety and major depression I took lexapro and it also saved my life I was actually probally having a POTS Period and I was 95% healthy after taking that for about 4 months. At that time I thought it was a miracle drug because it helped ***everything I was dealing with. I have thought of trying it again but am nervous since every time I take anything I get severe (like) anxiety attacks with tremors. But I'll probally at least try soon.

Lissy

[houswoea]

Thank you all so much. I'm still in the stage where my plans for the future do not include POTS or whatever is going on inside me.

I am taking Prozac, which I'm not sure is the right thing for me. It turns everything up a notch, if that makes sense. They wanted me to take that instead of lexapro because of my age?

The best decision I've made since this started was to find a counselor. She's certainly helped with this problem tremendously.

And yes, if I didn't have God on my side, I would be dead already. He's saved my life a few times, so I'm supposed to be here for now! "If God is for us, who can stand against us?" I think that includes dysautonomia, doctors, and everything else

[kayjay]

I hope you are feeling more encouraged. I think most us really do have emotional and mental lows.

POTS has changed my life in many ways. I want to share some of what POTS has taught me.

I really try to stay "in the moment". If I think too far ahead I feel overwhelmed and depressed.

I am more thankful than ever for my family and people who I love. I have more attention to give them because I am not "busy" with work.

I was really depressed about not being able to teach- I have learned that who I AM is not what I DO.

I am learning that perfectionism is over-rated!

I am learning to cut myself a break and not be so hard on myself...

I am thankful to know that I have POTS. It took me almost a decade to get diagnosed. I am learning how to live with this illness. I have leaned to sit in the shower, stay hydrated and eat salt!

Many people recover from POTS... and those people most likely don't spend much time on this site anymore.

You may be one of them someday! I know that I am much better but progress is slow and sometimes hard to notice.

As for anti-depressants. I was on lexapro but am doing better on cymbalta. If something isn't working for you consider making a change. The cymbalta has helped me with pain and depression.

I'm praying for better days ahead for you !!

And to Maggie- thanks for sharing those verses. I enjoy Psalms more since I have been sick!

[houswoea]

:'( But I want to teach! I love to teach! I will be so sad if I never get to do it!!! I know God's plans are ultimately better than anything I can understand, but I will still be sad if I never get to teach.

[TypewriterGirl]

I don't want to write this as a success story because every time I write it I jinx myself and have a flare.

I was sick and undiagnosed with POTS for years. No one ever knew what to do about it and I thought I was crazy. Last September I had a flu vaccine and from then on went on an awful spiral where I was in the hospital at least once a week for IV fluids, unable to work or drive. I had to stay with my parents for a while since my husband was studying for the bar exam and couldn't take care of me. I couldn't drive, I couldn't walk to the mailbox, and it was awful. I gradually started taking small walks, then longer walks. I became militant about my medication, and I also tried to stop worrying as much, going on these boards. Thinking about having POTS all the time just made me more anxious.

In the past few months I've moved states. I've been able to go out to dinner with friends (no drinking). I can walk my dog. My life is so much slower than it used to be, but I'm so grateful for every day and every step. I hope I'll always feel at least this good, and I definitely still have bad days/weeks, but in comparison to how ill I was last year it's amazing. I hope all of you can find some relief in your symptoms.

[erikainorlando]

Hi.

I just wanted to say...DON"T GIVE UP"! ;) Many many times POTS goes away...we don't know why. Furthermore, the longer we are sick the better we get at being sick. I now just say I have a condition. I am not sick....I don't have the flu or cancer...I have a condition. I need to respect that and give myself the time I need to rest and deal with stress...love myself..even with POTS and no job!!

I also really want to say - examine your POTS onset. Many times it is due to other things....POTS is clearly an autonomic dysfunction however it may be a secondary conditon. I was diagnosed with Stiff Person Syndrome. Most of the forum remembers when I couldn't stand walk...terrible...getting sent home from the hosital because sometimes I could walk so they thought I was faking it I guess...they had no idea. BUT I new something was terribly wrong and with the help of this forum I pressed on. Even after Vanderbilt said I might have a conversion disorder in addition to POTS as my ambulatory problems were definately not POTS related. Well, they were 1/2 right no conversion disorder...but they are not related...but my POTS is realted to my SPS. After my fifth round of Plasmaphersis, my hr troubles went away! Gone. So sometimes when we see autonomic specialists...they don't see anything other than autonomic probs...not the body as a whole....

I still spasm. So they did IVIG...no help. But I am going back in for me plasmaphersis. My body makes these horrible antibodies. And again, now my hr is increasing. Not too bad maybe 116..but it had been 70 - 90 all summer long. And hte ohter dysautonomia probs left too! I have no real good explanation but perhaps some physicain reading may be able to explain.

And if plasmaphersis has helped me so much....why don't they prescribe this for autoimmune POTS? Like me where I got it after a virus.

Keep asking and pushing....it is your life. Erika

[sue1234]

Erika, I would like to ask--does this have anything to do with measuring the various "immunoglobulins"? That's what my doctor just had tested, and when it was ordered, I thought of you and Arizonagirl. I won't know any results for a few weeks. I knew you were both going through the plasmaphoresis. Is what I had tested going to tell me about autoimmunity? This is all such a new area for me that I know nothing about it.

And yes, with you telling your story, I do hope in the long run that doctors will see how you presented, got diagnosed, and what treatment eliminated your POTS symptoms.