April Love

It's amazing how powerful the wisdom of others can be. That's what I love about this site. You think for a minute you are the only one and then you learn that you are normal given your abnormal circumstances. I can handle knowing that I won't know what to expect, as long as that's what I'm expecting. Thank you all soooo much! You have no idea how validating your responses were and how I look forward to implementing the suggestions. This illness is like the story of when Jacob wrestled the Angel and said "Bless Me" and the angel did, but in the process he broke Jacob's hip to remind him everytime he limped how blessed he was. It's like the more you limp along with this illness the more you appreciate the fact that your able to limp. If you try to run too fast, you'll be down, but if you don't try to limp, you'll be down as well. So you limp the best you can. I can do that!!! Thank you!

I get it all the time! I think it has to do with the NCS. They told me when first diagnosed with NCS I couldn't faint while seated, although I proved 'em wrong! But most often when seated I don't faint, I just get short of breath, my heart starts pounding, and then my head starts spinning. It has also happened to me while laying down. That made me feel really out of shape, but now it's just normal for me.

I am out on STD and have been for almost 6 mos. This is the 4th time in 5 years. My primary and neuro, have tried everything. Usual story, but treatments don't work for me. So here's the problem... How do I set expectations like a daily routine when my fatigue and illness vary from day to day? (Oneday I'm fatigued, the next I'm ill!) Do you all have performance expectations for yourself, like sticking to a schedule? Is it possible to maintain a routine with this illness? If so, how? Also, I keep trying to go back to work and keep leaving on a stretcher. This past year my doctor knocked on my head, literally, as if it were made of wood wondering if I was ready to admit I was sick. I just want to be realistic. I can't wash my own hair. (Maybe that's a little too real!) I have problems sleeping and problems waking up!!! I'm just looking for advice on achieving balance. How do I make realistic performance expectations for myself when basic functions of living are so hard? Will I have a better idea after I go to Vanderbilt, or is it unrealistic to expect knowledge of my limitations from participating in a research study. I didn't see from those of you that had posted in the past that you walked away saying things like, "It's official, my days of riding roller coasters are over!" (I live in Orlando, that type of knowledge is important!) Although, I haven't been able to do things like that since I got sick, no one came out and told me what I can and can't do so I've been learning the very hard way. Combine that with the fact that I am a blind optomist and this is not fun to watch! I wind up being the fighter that everyone is screaming "Just stay down!" at because I don't know my limitations. I need a realistic idea of performance expectations while I am sick. I also need to know what the best case, yet realistic, scenario is if a treatment works. When you all talk about treatments working, does that mean it can fix you or does that mean it just reduces symptoms? i.e. a beta blocker gives me time to know a faint is coming, but it doesn't stop them. I know it varies from person to person, but a guideline would help. I wish someone had told me 1) Don't wear a short skirt once your diagnosed with syncope! I learned that one with a blush!!! 2) Don't shower at home alone by yourself unless your seated! 3) I wish before I had bought a new truck someone had told me, I was going to have to give up driving! Any answers or advice would be greatly appreciated as always! Thanks! April Love POTS, OI, NCS Meds: Beta blocker, stuff to make me sleep, stuff to keep me from being dizzy, and Midodrine (can't remember all the names and spellings right now! Meds/Treatments that didn't work: Florinef, Salt Tabs, different beta blockers, pill for hormone regulations, support hose and exercise.

Why Do You Sleep So Much? Creative Answers for the Bedbound After reading one person?s struggle to explain to their family why they slept so much, I sent some of my more creative responses to them. Then I added a few more and thought I would post them. I thought someone might enjoy them. Healthy family and friends seldom understand what it?s like to be bedbound for weeks at a time. Upon emerging back into the awake world, I also am frequently asked, ?Why do you sleep so much?? (I?m usually down for 3 weeks before I see the sky again!) Anyway here are a few creative answers when POTS, OI, and NCS draw blank stares from your friends and family. ? I have an overactive dormant gene! ? I?ve been working undercover investigating The Pillow Cases. ? My medication causes hibernation ? I'm increasing my demand by limiting my supply to the outside world. It keeps my market value high! ? Someone has to keep an eye on those sheets! ? I'm an artist; sleep is my medium! ? My fatigue is a genetic trait; it's brought on by my family! ? My comforter is down and needed a friend. ? The tooth fairy owes me money and I?ve been trying to collect. ? I?m not chronically fatigued-the rest of the world is hyperactive! ? I, like Sleeping Beauty, would still be resting if my ?Prince? had not disturbed me! ? I look thin horizontally. ? Sleep is an under utilized skill in our society, I?ve been working to raise people?s level of unconsciousness. ? I?ve been conducting secret research for the pajama industry. ? Being brilliant, beautiful, charming, witty, and modest is exhausting! ? Big Dreams require more sleep! Anyway, I figured you all had some creative explanations as well and thought I'd throw this out there for a smile. Look foward to some good responses. (I'm gonna need them. I have to pass on a family wedding in 2 weeks because I'm too tired to put on make up.) My friends and family just think I'm anti-social. If they could see what I look like right now, they would understand that me staying in bed is really in the best interest of society! Hope you enjoy. April Love 30 years old Diagnosed with POTS, NCS and OI Heading to Vandi in April WOO-HOO!!! Drugs of choice: Midodrine, Atenolol, Valium, Serenity, and Love (The last two are the only ones I can afford without insurance.)

Just thought you might find this funny. I have a little dysautonomia prayer I say before bed, it goes "Now I lay me down to sleep, Please let me get out of bed at least once in the next three weeks!" I don't ask for much! And I know during my weeks when I'm in the bed my family and friends don't get it, so I just tell them when they ask where I've been, "I was hibernating, it's one of the symptoms of the illness!" Other explanations include, "I have an overactive dormant gene!" "I'm increasing my demand, by limiting my supply. It keeps my market value high!" "Someone has to keep an eye on the sheets!" "I'm an artist, Sleep is my medium of choice!" and my favorite that usually gets 'em off my back "My fatigue is a genetic trait, it's brought on by my family!" Don't worry about those who don't understand you or this illness, I wouldn't have understood it myself before I experienced it. (And now that I have experienced it, I'm too tired to explain it!) My family can't tell you what's wrong with me, but since I live in Florida and we don't really have a winter, they seem to understand that year round at any point, I am likely to be in the bed.

I am so sorry about your frustration. I can so relate. I went through the TTT in 2001 at 26 after a divorce. They told me I had NCS but probably the divorce and stress had triggered symptoms and to give it some time and I would be fine. Here I am 4 and a half years later, worse not better. I, like you, fought for a long time to get back my old life, I just wanted something slightly normal again. Now, I realize, it is what it is. My friends and I have a quote. "We take what we can get." That makes me feel better when I go out for lunch with them and have to be back home in bed 45 minutes later. I went through a guantlet of doctors before I found an internist I love, and the ironic thing is, he's saying the same thing my last doctor said, only he put it really simply for me since I'm kinda thick headed. He basically said, "Look, you have this thing and we don't know alot about how to fix it once it's broken. We'll try different meds, and do different things, but your life is going to change and there's not a lot we can do about that." I was heartbroken because I work at a theme park and have my dream job. I had my future pinned out on paper and was very active. My poor doctor had to give me that same speech many times over the past year (like I said, I'm thick headed!). Finally, after a while, I stopped fighting to get back to what I was and just took a deep breath and looked around at where I am. It wasn't in the plan, but there's a reason I'm here. I go to Vanderbilt in April, and unlike past doctor's visits, I'm not looking for my old life. I'll take what I can get. And one day, if I am ever able to get out of my stinkin' house as I could in my past life, I know it still won't be my old life, because before I couldn't appreciate how lucky I was to walk up a flight of stairs, or have the strength to go dancing. If I ever do get back out there I will have an appreciation for life most people won't ever have. And if I can't ever get back, I still have an appreciation for whatever I can get. Good luck and don't give up. You may not find the answers about your illness that you want right now, but you are young and time is on our side.

I was on a pill cycle that limited me to 4 periods a year. Even so, eventually, it got to a point that I still went down so hard those 4 times a year that I was it took me about 6 weeks to endure a period. 2 weeks prior I would start having NCS symptoms terribly, the week of, I couldn't get out of bed and it took about 3 weeks after to get enough fluid back into my system to feel somewhat functional. Many times, I just opted for a visit to the ER for an IV. I'm 30 years old and this year finally had a partial hysterectomy. I don't know of any other way to stop periods completely, but if you can endure the 4 a year, do it as long as possible. My primary doctor told me some people with this condition do better pregnant, but apparently I would have needed to have an entire football team to get any relief so I opted for hysterectomy. However, there are so many things a good doctor can do to help you with your symptoms and with only a limited number, it can be endured. I did it for over 4 years. Good luck. (Also, I was curious with the new ring, that limits your period, if tht would be better than the pill since nausea is such a problem for POTS people and half the time I couldn't keep the pill down. Maybe that's an option to look into.) Celeste

That's a great question. I don't know. I will ask today. Thanks for the response.

I am on it. It gives me headaches and goosebumps. I found it limited in how much it helps as well, but I keep taking it, because a little help is better than none.

I am 30 years old. I was diagnosed with NCS in 2001, but my symptoms are very severe and don't quite fit the usual NCS description, and tend to look more like POTS, except the symptoms seem to be degenerative. My nuerologist has decided, we know it's dysautonomia, but beyond that, we need answers. After many years of medicine trials and tests, I am going to Vanderbilt in March. Although I am grateful for this opportunity, I am rather nervous (I guess a more honest word would be...scared). Does anyone have any idea what happens when you go to Vanderbilt? I am sure it's different for everybody, but if you could just give me some ideas of possible things to expect, I think I would be less afraid. I am currently on Midodrine and it helps me maintain my disabled, lay down all day, don't make any sudden movements lifestyle without causing me too much pain other than bad headaches. I am also on Atenolol. Will they take me off my medicines? I have had so many bad experiences with things like Florinef, I am scared to try anyting new. I just want to know what I have. Will the tests they perform to help me figure that out be painful like the tilt table test? If so that's okay, I simply would like to be prepared. (The tilt table caught me off guard.) I can't really find any information on what kind of tests they do for dysautonomia. Also, will they give me the results or will they send it to my doctor? If anyone out there has any information that could help, I would greatly appreciate it. Mentally, I have gotten slow and have alot of confusion, so I figure if I start preparing now, maybe I will have some idea of what's going on when I get up there. Thanks for any advice, Celeste