So Depressed

[jnew]

I'm new on here. I cry constantly. I don't know how to get out of this feeling of enough. First, I've been battling getting off of benzos for so long. Not from recreational use, but from a stupid Dr that put me on them for RLS. That has been painful and taken everything in me. Now, POTS? How much is a person supposed to take?

I get to sleep only to awaken in a few hours with my heart pounding and I'm so hot but can't sweat. I have to sleep with an icepack. Then I'm awake and exhausted. Still, I try to ride my bike for 40 or 50 min every other day. How can it be that I can ride my bike or feel strong in my legs till my feet hit the floor and then everything is crazy just to get across the room?

This bobbing/rocking feeling is driving me mad. It doesn't matter if my Bp and pulse are high or low or normal....it's there all of the time. I want it to end so badly.

My vision in my left eye is funky. So along with the bobbing, reading is out.

My pulse and BP are all over the place. I eat lots of salt and drink plenty of fluids. I feel like I'm crazy.

My husband is so worried about my state of mind. So am I.

I'm afraid to have sex as to what will happen to me.

I know I have POTS, and am low in blood volume and have 40% pooling. I have no idea what the POTS is from or how to treat it. Cleveland Clinic diagnosed me and told me to increase my fluids and salt and exercise. Beverly at Dr. Grubb's was going to put me on Florinef, but due to previous eye pressure problems, told me no. So I'm on no meds. My blood pressure can get so low I'm terrified. My legs feel like weak heavy uncoordinated lead.

I have to have someone here everyday. I feel so useless. I was used to helping others and doing so much with my kids and granddaughter. Now, it's either bed, or the blue recliner to keep my feet up to stop pooling.

In my dreams, I am me...laughing, dancing, doing all kinds of activities. When I wake up, I just want to go back to sleep. I start crying then.

I am worn out and pray so much. I have been fighting the benzo battle for years and mow POTS. I don't think I have anymore fight in me. I admire all of you that have been doing this for so long and keep going. Dear God, I don't know what to do.

Thanks for reading this.

Julie

[lieze]

God Bless you Julie.

I want to tell you it will get easier but we are all different.

I do think it is hard to comprehend the change from a normal body to a POTS body.

With all the stresses I've had I almost feel as if I'm in a dream like state. Nothing really feels real like I'm floating in a cloud.

Hang in there and keep posting and reaching out.

[Katybug]

Hi Julie,

Some days it's really difficult and it feels very hopeless, but, there will be good days and those are what you need to look forward to. Hang in there and take one day at a time...when I have bad flare ups, I even sometimes go one hour at a time. You are not alone.

Katie

[HopeSprings]

I can empathize with everything you said - especially the part about dreaming you're the old you. I long for that person too. I went through the exact same thing - first the benzos, protracted withdrawal and now POTS. It feels like it's never ending. The only things that give me comfort are talking to people here and continuing to search for answers, with the hope that one day I'll find one. ((Hugs)) to you - I wish I had more to offer.

[HopeSprings]

This just popped in my head. I think I said this in your last post too. Some of what you're experiencing could be from the benzos or from the taper. It's possible once you're off and some time has passed that some of this will just go away. Try to have faith.

[Dizzysillyak]

I'm sorry you're having such a rough time. Hugs ... I was just as devastated as you in the beginning. It's only natural to mourn the loss of your health.

If you haven't already, I'd see an integrative doctor who would look for possible causes. It can't hurt to try .. The one I see has helped me tremendously. A lot of us have allergies and nutritional deficiencies. Fwiw. You can be sensitive to a food without being allergic or have celiac disease.

Like the others said, I live for the good hours and days. And hope that they'll find a treatment / cure

for us.

Meanwhile, just coming here and reading other members stories and comparing notes keeps me motivated to do everything I can to help myself.

Tc ..d

[MomtoGiuliana]

I'm so sorry you are having such a difficult time right now. Chronic illness is a lot of hard emotional work.

Do you have specialist(s) helping you with other alternatives if florinef is not a possibility? there are a lot of meds that can be tried.

Please continue to hope. For most people, POTS symptoms improve over time.

[sue1234]

One thought is all the salt you are taking in. It is possible it could be making you have some fluid building up in your inner ear. I have had that problem when I try and take in more than average salt.

[blueskies]

hi jnew,

My heart goes out to you because it is tough to live with this thing.

Some days I find very tough going. Others not so tough. Sometimes I even find myself enjoying myself. And I take note of it when I do. Sort of store it up so that when I'm feeling bad again I can think back and realize that although, maybe right in this particular moment I think everything is black, there are many times when I don't think that.

I find seeing a psychiatrist to be tremendous help although we haven't found an anti-depressant yet that I can take successfully because of side effects or allergies to them. But being able to see my psychiatrist really helps me keep stuff in perspective. We talk about the problems of having an illness that has symptoms that can be so hard to manage and it just helps to talk it out with someone that I'm not related to. I've talked enough about it to my friends (don't have many friends) and family. They don't want to hear any more about this illness -- they tend to feel frustrated because they can't fix it -- and I understand that. They feel for me but they don't grasp what it's like to have it. My psychiatrist does understand so much about dealing with this stuff and when he doesn't and says something that doesn't apply I am able to point out to him that 'no, it's different than that.' and he listens and 'gets it.'

The only problem I have with seeing my psychiatrist is the difficulty actually getting there. But I nearly always seem to make it, only cancelling the day before if I'm going through a really rough patch. I don't attempt to catch buses to see him anymore. I grab a cab. I've got a pots doc, an allergist, a pain specialist, a neurologist, a general practioner, a gastroentorologist and they all help me. But it's my psych that helps me the most.

My psychiatrist, along with this forum and imazebra forum has been, over the years, of enourmous support to me and although at times I feel very dispirited it really helps to know that there are other people out there who know exactly what I'm feeling. So make sure you hang around and keep posting and reading. The people on these forums really do help and they know a ton of info between them and many ways of coping with this illness.

Plus, when feeling lousy it really helps when I respond to someones post, too. Writing my response helps me get stuff into some sort of perspective. And when I start a start a new topic I know I'm going to get great answers from people that offer up some great advice or just plain, but invaluable, empathetic support.

welcome,

blue.

[sue1234]

I forgot to clarify by what I meant about fluid build-up in the inner ear. It could possibly be a cause for your 'rocking boat' feeling.

[jnew]

Thanks to all of you for your responses. It's such a hard journey for us.

I developed the rocking feeling before I had a diagnosis of POTS and was taking in all of the salt. I so want it to go away. I want to live in my dreams. They are so much better than my reality.

Thanks,

Julie

[maggie]

I am not going to feel sorry for myself or any of the others on this sight for their health issues. I have had pots now for 6 years and have been fighting with all my strength to get back some of my life. I had to give up my active life sytle just like the rest of you and yes, I cried. It's only normal to cry for the loss. But the crying has stopped and the moving forward has started and nothing is going to stop me from living life! I now play the digital piano for enjoyment. I now am learning to sing. I have just written my first song lyric and working with a producer to record my song. I am also working on a new business of training service dogs for those in need. All these new adventures would have never come to the surface if I had never gotten pots. I now have a better understanding for those in need if I hadn't gone through this myself. Now my songs are all written from my life experiences. I'm also taking dance lessons to help me restore some of my strength back. I am also working on a video in regards to dancing to help us with pots with the help of my dance instructor. Does my life sound empty? In no way, it is more exciting now then before because I now know how sweet life was and can be if only you stop looking at what you have lost and start seeking for what you can find. My prayers go to all those who have loss, and that is everyone here on earth where it be health, relationships, or another type of loss.

Maggie

[gertie]

It takes time to adjust to Dys/POTS if we ever do. I've had it many years & some days I wonder why I bother to

struggle & other days I do ok. The way I see it we have no choice. We were put on earth for a reason, altho

I'm not sure what it is, but we must do the best we can. We can try to set a good example for others. The thing

that helps me most is, "take one day at a time & not worry about what might be". I have not cried because of

this illness but I get angry. I know it's hard to imagine anything worse than what you're going through, but there is.

The rocking feeling may be inner ear. I also have Meniere's disease which causes that feeling. The

Benzos could also cause that symptom. Be thankful you have someone to stay with you daily. Stay strong, things

will get better.

[Maiysa]

Hey Julie,

So sorry you're feeling blue. I acquired this at age 42, and I was going strong-having so much fun and loving my life. It was a blast. But life is never set in stone. And acceptance has been my biggest nemesis, but now we are friends...most of the time. haha. I am now going on my 6th year of this journey and still have a lot of unanswered questions and still a lot of feeling sick. I understand what you are saying, I miss my old life too. Sometimes when I wake up I think it was a dream and I never thought i would be living an hour to hour life of not knowing what's around the corner. If you are new to this it is a terrible adjustment. But I want you to have faith and know that it can always get better. I am having better days here and there and I cherish them so much..so much! and I've learned now that somedays...a lot of days are just going to...how can I put it elegantly...*****. But those good days keep my hope up. Every case is different and do your best to be inspired by the good stories-there are several out there. And for me God has done wonders for my spirit. Hang in there and keep hope and faith. Watch as many funny movies and sitcoms on the bad days...it makes it not seem so bad if we can laugh. Most of us, if not all of us, have been where you are-stay strong.

Best Wishes and a Smile and a Hug,

Maiysa