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calisto_bee

Need Encouragement

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I don't think I can go on feeling this way. I'm at the end of my rope, waking up morning after morning feeling worse than the day before....weeks and weeks lying in bed whilst the world and life continues without me. I find it very difficult to live this life.

I've been waiting for my TTT for months, I finally have an appointment for the 31st of this month and I'm petrified. I try so hard not to be ill around people, and I'm worried it's going to make me worse....I can barely function as it is.

I find it hard to keep fighting....my doctors have been useless, just sat on waiting list after waiting list. I received the follow up appointment to the TTT this morning, it's for Xmas week. How can I go on feeling this way for that long.

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I'm so sorry you're feeling so poorly. I often feel the same way with doctors. Test after test and no answers. Just keep pushing and fighting. It's amazing how much the body can heal itself. I obviously can't say things will magically turn around for you, but they somewhat have for me. It's been a slow journey with many set-backs but a year ago I couldn't get off the couch or eat a bite of solid food and now I'm able to do a lot of things. My grandfather had a similar episode that lasted four years. He had to stay in a darkened room during that time because any stimulation would trigger his symptoms. He was a teenager and I remember him telling me he would feel so envious of his older sister because she was living life and he was trapped. Somehow, his body pulled through it and he lived a very long, mostly healthy life.

I know we're all different, but I hope my stories can help. Stay strong and keep reaching out! My thoughts are with you!

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I'm sorry you are struggling. I know the wait for doctors is difficult but there are so few that understand dysautonomia that they are spread thin. Hang in there. Xmas will be here before you know it. No need to be afraid of the results, information is power.

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You are in a place where a lot of people can really relate to how you are feeling right now. I'm glad that you felt that you could reach out to people for support and encouragement on here. We all know that its hard to keep going when it seems so hopeless, but as the other commenters have said, just keep going. Its an incredibly long process for all of us, and I know I (and probably most people on here) have felt like they were going no where. You are strong just for having survived with these problems for as long as you have! If you ever want to talk, and get more encouragement, please feel free to shoot me a message. Stay strong!

- Fainting Goat

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Calisto, I do know what you are feeling and going thru. I think many of us go thru periods that are tougher than others and it is mentally and physically exhausting. When I first became homebound it was the toughest thing ever! I dont know how long you have been battling this but I can tell you that you can and will adjust to your new life. It may take a little time but it will happen. Hang in there and try to focus on the things you can do and the things you can control now, try to find a new way of still being yourself in this new life and you will be happy again. Trust, hang on, and dont give up hope! Push thru this and lean on those of us that understand, you will come out of this. Sending you cyber hugs!

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We have all been in your shoes babe... All of us have had that moment of "What the world is wrong with me, why is it like this, why why why?!?!", and in my world, I used some pretty colorful terms (I curse a lot when frustrated), and its taken months, and sometimes years to finally get those answers. I've had my answers since July, and I've watched my life slowly drift away from me. Now I'm having seizures, and they dont know if it's a head injury giving them to me, since I pass out on a daily basis, if it's the dysautonomia, or something else wrong.

It *****. But thats where this board has been my lifesaver. This board has provided me answers, has given me support to speak up and demand treatments I would have never known about, and this board knows exactly where I'm at in my POTS struggle. We are here for you, to hear you, to love and accept you, and we will be here when you have your TTT, and your followups, and in between those times as well, and beyond.

**HUGS** You can do this. You're stronger than you think. I keep being reminded of this by the folks here, the folks around me, and by my journal. If I can survive drug abuse, rape, a family that basically dropped me like a hot potato, and a body that seemingly is shutting down, but my mind is sharp (well, sharpish, its called brain fog, lol), there's gotta be a reason I'm still here, and I'm still me.

You can do this. You're stronger than you think. And we love and support you here.

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It's going to get better. Keep plugging on. Keep all your doctors appointment and don't miss your test, no matter how bad you feel. Doctors can't tell what's going on unless they can see and visit with you. Playing the waiting game for all the test is also hard. However, you will get some of the pieces put together and then some medications that will get your body on track again. Hang in there and be patient. My son was bed bound for several months before I started seeing any improvement at all. An amino acid supplement helped him regain some of his functioning level. He still drinks a high protein amino shake to help maintain his current level of functioning. He drinks GNC Amplified Wheybolic Extreme 60.

You should have to wait so long for the test results? Can they not put you on a waiting list for cancellations appointment? You should not have to be waiting this long to find out test results. Another possibility, can you see another doctor in the group that can give you the results of your test because he is not overloaded with patients. This is a terrible long time to have to wait for a follow up visit. Hope you can move this appointment up.

Rachel

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I'm so sorry that you are going through this. I know how discouraging and frustrating it can all be. Going from doctor to doctor, trying to get answers and the life you knew back while time slips away. Keep hanging in there. It will be worth it in the end. It took me years to finally end up with doctors that knew about my condition and how to best manage it. Being a part of this forum will afford you with so much support, encouragement and valuable information. Every day is a brand new day and eventually there will be a doctor that can help you. Hopefully it will be this one you will be seeing soon. As Rachel suggested see if you can get on a cancellation list so you can maybe get a sooner follow up apt.

Don't give up hope,

Janet

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Thank you all for your kind responses.

Thursday was a bad day....I lost what little strength I had but suffice to say I picked myself up, brushed myself off, and started again.

I won't lie, I'm absolutely dreading my TTT.....as stupid as it sounds, I'm petrified of fainting. So far, I have managed to avoid passing out, although I get terribly lightheaded, sweaty, sickly and the like. From my own readings my BP rises along with my heart rate when standing, but I am unable to stand for any period of time so I'm not sure if it drops eventually. I just know that if I pass out, my confidence will take another beating.....it's a scary thought.

I heeded your advice regarding a cancellation....I spoke to my doctors Secretary and I am now on the list should a cancellation arise, fingers crossed.

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So happy to hear you've done what most of us have learned how to do. Get ourselves up when we are down, literally. We are more then our bodies and we can still find joy and purpose even if our bodies don't cooperate.

My bp goes up too. Prior to my TTT I only had near syncopes, as I usually got myself down fast enough not to faint. I'd learned to compensate without realizing I was doing it. The only time I did syncope was on the TTT after the nitro under the tongue. It has never happened in real life. So no need for your confidence to take a beating if you pass out. They are forcing it during the test.

So, I have some tips for you from my experience. Wear very cushy comfortable shoes and socks that clear moisture. I just wore socks and it was really hard on my feet and they stained black from my socks getting wet. Wear shorts or cropped pants, so the doctor can visualize color change in your legs. If your pooling they will change color. Make sure they have an appropriate bag for you to use should you get nausea. I almost lost my cookies and they handed me one of those silly shallow plastic bowls.

Before they start the test make sure they have you supine long enough that your bp/hr get to your normal baseline. As my bp goes up when I talk, my bp was high at the start of the test from talking. I still failed but it would have been nice for them to see how low I go when supine. So try to be calm and quiet before they tilt you up. Don't worry about the pass out, they will put you down as soon as that happens and you come right out of it. They should give you IV saline after the test, it will help you feel better. Make sure you have someone drive you home.

I won't lie the middle part of the test is not fun for those of us with dysautonomia. All the symptoms that you are good at avoiding and compensating for will present. My legs started contracting on their own trying to get the blood up. It is amazing what our bodies do to keep us going. The test helps us appreciate that. It also gives you a better idea of what your early warning systems are, so you can avoid things better in the future. So, pay attention to your symptoms during the test. If you do pass out that is really good info for the doctors to have. My results were that I had hyperandrengic pots with syncope. That is two forms of dysautonomia not just pots. My dysautonomia though is a result of small fiber nerve damage caused by immune diseases. As my cardio said "There is not cure yet, but we can manage it and you can live with it." Treating my immune disease has helped improve symptoms. So have hope, all is not lost. We just have to learn our new normal. I have found many gifts and silver linings that I would not have had I not gotten sick. Try to look for those.

Take care now and keep us in the loop on how things go!

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Wow - I think all of us live on an emotional roller coaster. I know that when I have been down a long time with prolonged flaring of my disease, I become rather depressed and feel that life is useless - I don't want to carry on. Yet, when the flaring lifts, I feel better and wonder why I ever allowed myself to get caught up in such negative emotions. Don't feel like you are alone in this. We all know what it feels like. The protracted nature of this disease and generally feeling yucky all the time has taught me that I cannot waste time on focusing on the downside. I may be stuck on the couch or in my recliner for days on end but, I can pray for others who are having a bad time and send out notes of encouragement to my church family who are suffering as well. It seems like when I re-focus on the needs and sufferings of others, my own difficulties feel not quite so heavy and distressful.

Good luck with the TTT - you will do fine and it will be over quickly - then, one less thing to worry about - and maybe a big piece of the puzzle will be answered for you.

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Be encouraged in the fact that you have this board to come to when you feel at wits end.

We have ALL been there, and at the end of our ropes. We survived those times.

This disease is very much about management and experience.

Dont quit while your still acquiring information, how to avoid triggers, and while youre acquiring information.

It takes patience. Very few people here get continually worse, because they learn early on that as

they gain knowledge they gain more power over it.

Me for example. Beyond this problem, i have sleep apnea. This makes feel HORRIBLE but im CONTROLLING

it with cpap technology. This technology is new, imagine having this problem 100 years ago!

So i feel BETTER as i grow in the use of it. I also know how to avoid triggers now, and i have a medication

that fights off the worst of it when i feel awful.

I know im making progress, and keep coming here for help when you need it. Knowledge and experience

will lead to results. Everyone here will help.

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