NOW they tell us

People taking epilepsy medication have twice the risk of suicidal thoughts

I'm not currently on any, but back in the day when they were trying their damndest to get anything to work on me I was on a number of them and let me say this: yes. It does happen. With me it only happened with one drug and I was promptly taken off of it. This is one drug out of the five I ended up trying. And when they say twice the rate, they mean .43% of the sample group compared to .22% of the placebo group. But it does happen. And there should be warnings. Hopefully this will help people be aware that epilepsy meds are nothing to fuck with.

Oooh, your maroon stockings are so pretty!

Uh, thanks, but its actually the massive amount of blood hanging out in my legs.

Yeah, it seems that since I've quit the Florinef (or started the Atenolol) that I've developed one of those POTS symptoms that I previously hadn't had: molted legs from blood poolage. I've had blood pooling before, but never visibly except for in my feet. Now its appearing in my legs. It's pretty subtle, they don't look anything like this.

In other medical news, it's now been over a week since I started the Atenolol. I think I still need another week to really determine just how good this treatment is for me. So far I think it's doing a good job, but that's not to say this experience has been without side effects and other occurances.

Coldness I'm cold all the time now. These days I'm rarely seen without a light fleece jacket except for when I'm just coming in from having walked a mile or so. It also doesn't help that Pittsburgh is chilly in the winter and my bedroom window seems to be a little drafty. My hands and feet are also cold all the time as well, even more so than the originally were.

Bizarre Dreams Being on a Paxil/Florinef and others cocktail for a long time, I'm used to having odd dreams, but the past few mights have been really taking the cake. In one dream I had three seizures back to back (note: I do in fact have a seizure disorder completely unrelated to POTS and for about the past year the condition has been inactive). That's my idea of a nightmare right there. I also had a dream about an old flame who, in a nutshell, led me on without realizing it himself for a while and then when he did tried to let me down as gently as possible but ended up leaving the situation very open ended and ambiguous, thus confusing the hell out of me and put me through an emotional hell for a while (didn't help that I was a really stupid freshman at the time). So having him insert himself in ANY dream of mine disturbed me profoundly.

Waxing and Waning of Appetite When I was first put on the Atenolol I had the appetite of 3 pregnant women. The past few days however, that's turned into the appetite of a chemotherapy patient. I've been eating very meager portions of meals but not feeling like I'm missing out on anything. However, this brings me to my next complaint...

Stomach Troubles Like I said, I haven't been eating very much, but when I do sometimes it's accompanied by nausea or bloating and gas. I'm used to mild bloating and gas, but it's been even moreso lately. The random nausea is new too. It could be that something had gone bad in the salad I had last night. However, Pepto killed the nausea and I felt fine.

However there have been a lot of good things. My heart rate and blood pressure have both dropped. I'm not as tired all the time as I used to be (although I am taking a nap after this... because I can :) ). So far the good is outweighing the bad, but this is a drug that takes a few weeks to level out in your system, so we'll see how it goes.

Soooo tired

Today I was tired BEYOND tired. I don't know if it's a side effect or me not getting enough sleep or a POTS thing or what. I could barely drag myself to my 9 am class and when that was over I skipped work and band practice to come back here and take a nap ultimately lasting 6 hours (on top of the 6 hours of sleep I got the night before) and guess what? I'm still tired! I met up with some of my fellow social work students tonight to work on a project and I was dragging ass barely able to contribute. I also didn't wear my compression tights today (for the second day in a row) and noticed considerable pain and pressure in my legs, forcing me to break down and don them, which alleviated that issue. But I'm still tired.

Well, the Atenolol seems to be working. My POTS symptoms have been dramatically reduced, I have more energy and concentration than I've had in years. Today I was even brave enough to venture out of the house all day WITHOUT my compression tights. And you know what? I was fine.

There are three problems though. None are cause for great concern, but they're definitely strange. I've been more sensitive to cold lately, I've been peeing like a racehorse, and I've never been this hungry in my life. The cold thing and the peeing thing are more just annoying, but the being really hungry thing is kind of concerning. I'm not sure if I can attribute all of this to the Atenolol or if it's from stopping the Florinef, but these are definitely new sensations in my life.

Falling Into a Medical Abyss

So I stumbled across this article about a man with a rare disease. Although this disease isn't POTS or a dysautonomia, I can still relate to it. It's about just how crazy it is to live with a rare disease and how frustrating it is that no one is holding races for your cure or telethons for research on your ailment. Here it is:

Falling Into a Medical Abyss

Living with a rare disease is a little like being an orphan. But one doctor has helped me find a home.

NEWSWEEK

Updated: 2:28 PM ET Jan 12, 2008

Some days I wish I had cancer. I'm even tempted to tell casual acquaintances that I have cancer, because when I say "severe aplastic anemia" they look at me blankly, or they reply that their aunt Sheila has anemia or, worse, they say, "Thank God you don't have cancer." That's what the hematologist said after reviewing my bone-marrow biopsy: "The good news is, you don't have leukemia."

I run my uncle's internal-medicine practice, so I see cancer patients and survivors all the time. There isn't much that shocks or frightens anymore in this exhibitionist age, but there's one bridge that everyone still trembles before: cancer.

Yet during my first trip to the oncology ward—oncology because there are no wards for aplastic anemia—four successive roommates, all leukemia patients, returned to their lives after receiving treatment while I stayed and reflected on mine.

Aplastic anemia is a noncontagious disease in which, for unknown reasons, the body's immune system destroys newly formed blood cells in the bone marrow, causing life-threatening anemia and high risk of infection and hemorrhage. When you have a rare disease like mine, you don't fall through the cracks in the system—you fall through a gaping abyss. There is no money for what you have, no telethons, no support groups, no ribbons of camaraderie. Because there is no profit in developing and testing drugs for rare diseases, they've been lumped together as "orphan" maladies, much as real orphans are crowded together in one place to be more efficiently cared for. And the metaphor of being an orphan feels all too real, as if you're abandoned to dark corridors while mansions are constructed to treat diabetes and AIDS and Alzheimer's. When you're an orphan you envy people with families, even such horrific families as cancer.

But there's one glowing advantage to having a rare disease that perhaps redeems all the rest. You never have to wait for an appointment. There may be only a handful of specialists in the entire country familiar with your disease, and you may have to endure hardships to reach them, but they'll see you right away, and they won't have to look at your chart to remember your name.

After I was diagnosed last April, Dr. Jaroslaw Maciejewski, a Polish-born researcher at the Cleveland Clinic, offered me an appointment in three days, and even then apologized for not being available sooner. My parents drove me two and a half hours to the steel-and-glass structure on the Cleveland Clinic campus called the Taussig Cancer Center, because there are no buildings for aplastic anemia. As a child I had reveled in my nonconformity, but now, at 46, I wanted to meet people just like me. Instead I saw two floors of pale women in headscarves, and wheezing men with canes or walkers. Yet many of these beleaguered patients were in remission, and all of them, I realized, despite their obvious suffering and my deceptively normal appearance, might outlive me.

Patients are often tossed from doctor to doctor and given little time. I got two doctors. First a fellow came to take my history and examine me. Not a student or resident but a hematologist-in-training rotating through this specialty clinic and serving as a kind of Watson to Maciejewski's Holmes. That was my first impression of the idiosyncratic doctor as he burst into the room, shook my hand and leaned against the sink, his hands empty, his hair tousled, his blue eyes piercing yet not unkind, and began, as though we had long been friends, "So, Mark, tell me …"

He spent more than an hour with me, patiently explaining my options, the history of the disease, the current state of research. Thirty years ago the severe form was always fatal, but now it can be pushed into remission or even cured by a bone-marrow transplant or less risky immunosuppressant treatments. When my mom let slip that I was a writer, the doctor's eyes lit up and he implored me to write a story about scientists, a thriller, filled with intrigue. Not the sort of tale to give a new patient confidence, but that was the best thing of all, not to be treated as a patient.

So wear your ribbons and watch your telethons, but know that your cures might be born in an orphanage like Maciejewski's. And even if they aren't, these doctors who treat rarities deserve high praise for their devotion, whether they save a hundred million lives, or just one.

Schreiber lives in Columbus, Ohio.

Atenolol Day 2

I started Atenolol yesterday. So far I haven't noticed anything negative (although I was feeling strange last night, but that was unrelated). In fact, today I was able to scale some serious stairs in some serious cold with no ill effects. I'll take that as a positive. I think I'll need a few more days to really formulate whether or not this is a step in the right direction.

Feeling Good These Days

I've really been feeling great lately. I'm able to concentrate so much better and I have more energy. I haven't had the overpowering urge to nap in the middle of the day like I used to. I credit this to two things. 1) getting off of the Florinef and 2) beginning to go exercises. I haven't been going to the gym, but whenever I get the chance I've been doing some leg lifts and arm circles and the like and it's really helped alleviate the leg pooling. The great thing about these exercises is that you can really do them anywhere, especially the leg lifts. AND you can do them sitting down, great for any POTS patient.