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.

Withdrawal Day 4

Today I just had a headache on the withdrawal front. I also may have dropped a couple additional pounds. It's hard to tell though.

The big event today was the worst abdominal pain EVER. I had a salad with lettuce, bell peppers, banana peppers, black olives, feta cheese and ranch dressing. I've had similar salads before with little to no problem. Today I was cramped up in SEVERE pain for hours. I was in class when all this was happening. After a trip to the bathroom it resolved itself more or less but was not an experience I'd like to relive. I've had some issues with raw bell peppers before but NEVER like that.

I think maybe I'm better able to concentrate off the Florinef. I went to the library today and read semi-boring economics literature for an hour and a half without breaking at all. This is not a normal feat for me. What sucks is that I was on Flornief for almost 5 years... I have no idea how I worked back then. All I know is that these days I seem to be concentrating better. Yay!

Withdrawal Day 3 and Possible Allergic Reaction

Today's withdrawal symptoms were pretty mild. My weight loss seems to have settled at around 6 pounds since Friday. I've been pretty clear headed and not too bad off on the POTS symptoms front.

One of my friends came into class today with an absolutely horrid cold. I strongly feel that people with raging colds should do us all a favor and stay home. This semester, as much as I have going on, I can't afford to get sick(er). With this in mind I went to the drugstore to buy some Airborne tablets, which I've never tried.

First of all, it was about the most intense crazy taste I've ever had of anything. Once that subsided I settled in my room. Going to the bathroom a few minutes later I noticed some redness on my face around my mouth. In addition, there was some mild swelling of my lips and maybe a bit of my tongue. Also whenever I stood up there was instant tachycardia. I didn't go to get this checked out because it didn't get worse, just got kind of weird. I asked my roommates if they noticed anything and they agreed that there was some redness and mild swelling. Even now the redness is still there to a lesser extent and I look like I've just put on a bunch of lipstick (my lips in the winter are normally pretty pale). To me, it's not worth going to the ER in the middle of the night in the snow, so I'm gonna sleep on it. I'm guessing this is a mild allergic reaction to the Airborne... unless I've suddenly developed an allergy to arena nachos that takes effect an hour later.

EDIT: So I just looked at the container of Airborne and apparently I was supposed to drop the tablet in water and then drink it instead of eating it whole. Wow. That might explain all this. I really need to start reading labels more often. Today I opened one of my roommate's packages thinking it was mine. Maybe withdrawal from Flornief is making me clearheaded but stupid? Sometimes I wonder how I made to being a Junior in college with a pretty solid GPA.

Withdrawal Day 2

Todays withdrawal symptoms (at least, I think they're withdrawal) have been a headache and some feverlike activity. But the headache wasn't anything that some Ibuprofen couldn't knock out so I'm fine now. I managed to get my laundry done today (hauling it via rolling suitcase two blocks to the laundromat... not the ideal situation but it works).

I basically stopped taking my birth control as well. I ran out of it the other week and although I have a fresh supply I think I'm going to give it a rest for a while. I've been on it for about a year and half and I haven't heard good things about being on birth control long term. Since I have no reason to be on it right now, might as well give it a rest. Both birth control and Florinef are notorious for weight gain. Since I've stopped taking them both I've lost about 5 pounds.

I've begun doing a bit of exercise here and there but what I've been doing I KNOW can't be responsible for a 5 pound weight loss in a few days.

I guess I'll enjoy this new lightness while I have it since Atenolol has weight gain as a side effect.

Random Anecdote

I go to the University of Pittsburgh Medical Center for my medical stuffs. This center frequently gets ranked among the best hospitals in the country with a wide array of specialties. They can treat pretty much anything there.

When I was at the doc's office yesterday, he attempted to enter "postural orthostatic tachycardia syndrome" into the diagnosis field in the computer. It came back with an error message, saying that it was an invalid entry.

For a hospital as big and supposedly as great as UPMC to not recognize POTS just shows how rare this thing is. I don't know the exact figures of how many people have POTS, but I read somewhere that it was 500,000 in the US. For a population of 300 million people, that equals 0.17% of the population that has this disorder. Pretty freakin' rare.

Also, I'm having my first day off the Florinef today. So far all is well. I was a little foggy and feverish at the beginning of the basketball game (I'm in the pep band) but that has subsided.

Atenolol

So I went into the doc's office today to discuss my tilt table results. I got a copy of the results (hell yeah! Concrete proof!) and under the section where it summarizes this called "Impression" it says:

"This is an abnormal study. This is borderline evidence for postural orthostatic tachycardia syndrome. This was no orthostatic hypotension. This is borderline post ganglionic sympathetic sudomotor dysfunction as well.

These findings may be seen in patients with POTS of relatively mild severity."

Ok. I have mild POTS. I knew that. People with severe POTS generally speaking can barely leave their house. I still go to school, work, and have an active life, just sometimes it's a bitch to do so. BTW- that postgangilionic thing basically means my feet don't sweat a lot... apparently this is also a POTS trait.

So what's the solution? Atenolol.

This drug is a beta blocker that blocks too much adrenaline. It also lowers blood pressure... today my doc said that for a woman my age my blood pressure was on the high side today. I've never been told that.

I'm also going off the Florinef. Sorry florinef, you and I had a good run, but it's time for me to move on. Going off the Florinef could decrease my blood pressure (it's supposed to raise it). I could also lose some weight in this process because Florinef makes you retain water. The plan is to stop with the Florinef for a week to give my body and chance to cool off and then start with the Atenolol.

I could also be going off the Paxil CR because he doesn't agree with me being on it indefinitely and neither do I but we both agree that this isn't the time to try and withdraw.

So we shall see how this medical saga plays out.

Stomach Blah

After deliberation, I've decided to bring up my GI issues with my doc when I go in on Friday. I haven't eaten in 5 hours and I'm still bloated and gassy and having good ol' dulled stomach pain. Of course, this could also be because today was the first day of that time of the month, which generally makes this worse.

Today I had a random flare up while walking to class. After work I went to Subway for some dinner and then walked to class. The walk from the Subway I was at to my class was around 9 or 10 blocks (note: these are Oakland/Pittsburgh blocks which can be small... it was about a half a mile). This isn't an unusual amount of walking for me. On my way there my heart was beating ridiculously fast and I had to sit down. Taking my pulse it was about 180 or so. I got my cane out to finish the walk to class.

Last night everything on the symptoms front got a whole lot worse than it was yesterday afternoon... this was compounded by the fact that my roommates decided to have people over for dinner (all friends of ours... I okayed it on Monday, but wasn't feeling up to it last night). My legs felt like they had sandbags tied to them. Standing up was a chore. I had a headache. My stomach hurt. I had an interesting taste in my mouth. It wasn't fun.

I'm feeling kind of draggy today. I don't have to be at work until 2 and I don't have class until 6 so I'm just killing time until I have to leave the house.

Also, not being on birth control makes me remember what PMS was. ugh.

Adrenaline from Hell

I seem to have been on the adrenaline kick from hell the past few days. I can barely sleep, but I feel wide awake. I'm tense all the time. I've been sitting down for about half an hour now and my HR is still hovering at 100 bpm. Normally when I get home for the day I take a nap but I don't feel the need to.

I'm not sure what could be causing it. I ran out of birth control pills, but that doesn't explain anything. It could be the stress of starting a new semester (my workload is already pretty crazy and I haven't even had two of my classes yet). It could be the fact that although I've never garnered a bipolar diagnosis, I display some of the symptoms and I could be in an upswing. It could be everything. Either way, I don't like being wound this tight. It makes me antsy and unable to sit still.

Don't Eat the Spoiled Yogurt

So you know how I said yogurt helps? Well, only if its not spoiled. Learned that one the hard way today.

I'm back in Pittsburgh after my three week sojourn in North Carolina. Classes start tomorrow. I have my doctor's appointment on the 11th. Whee.

POTS and IBS

As some of you may know, or not know, one of the things that tends to go hand in hand with POTS is IBS, or Irritable Bowel Syndrome, a disorder of the gastrointestial tract that causes abdominal pain, cramping, bloating, constipation and diarrhea. It's annoying, but not necessarily life threatening. It's usually managed by diet. Both POTS and IBS are related to the autonomic nervous system, so it makes sense that they tend to go hand in hand. I've never been formally diagnosed with IBS, but I wouldn't be surprised if I have it considering that I fit most of the diagnosis criteria. I've never gone through the trouble of getting it diagnosed because there aren't really many medicines out there to treat it and to me the abdominal discomfort and bloating and constipation have become background noise to my life. I've learned to ignore it. Although this is helpful with coping, it's bad as well because I tend to forget what foods will set symptoms off. Even now, because I always push it to the back of my mind, I'm having difficulty remembering what foods set me off. So in that spirit, if I encounter a food that sets me off, I'm going to write it down here, starting with today's experiences and what I remember

Pretzels
Red Onions
Caffeine
Alcohol (the morning after)

I've also noticed that yogurt really helps, so I've been incorporating that into my diet.

Job I Can't have: Professional Mover

Lifting heavy objects plus POTS equals No Good.

North Carolina is in pretty severe drought right now. My family uses a well. If there isn't enough water, the well either dries up or the water filter gets clogged with silt and gunk, causing us to have no water pressure. The gunk is actually ironically enough from recent rainfall we've had, stirring up the silt and whatnot.

However, I didn't know the water was going to crap out on me until halfway through a washing machine cycle. After a couple of hours we realized the water wasn't going to come back so I had to load sopping wet, smelly clothes into a couple of trashbags and haul them to my dad's house, where I proceeded to finish the laundry.

I wasn't having any symptoms today until I had to lift those ridiculously heavy bags and haul them out to the truck. Then my heart started racing and I got kind of dizzy. I shook it off and continued on, but it left me thinking that I should really refrain from lifting heavy objects.

Happy New Year!

Happy 2008 everyone!

I've made a new years resolution that will probably help a lot with POTS: don't drink alcohol as much.

I don't view myself as having a problem with it and usually I'm quite in control, but last night I overdid it and spent today paying for it. I figured it would be appropriate then to write about POTS and alcohol.

A couple of drinks now and again really doesn't have a negative effect on POTS as far as I can tell. If anything, it suppresses my adrenaline so I don't feel so tachycardic and tightly wound. Not that I'm recommending a couple of beers before work as a legitimate treatment, I'm just writing what I've noticed.

However, getting sick in any form makes my POTS symptoms ten times worse, and really bad hangovers are no exception. Throwing up makes me lose fluids that I badly need. Standing up is a beast. On top of that, I think my adrenaline levels are through the roof. I've been tightly wound with pretty bad tremors all day (I normally have a mild tremor).

The conclusion: alcohol in moderation really isn't that bad for this particular POTS patient. Overdo it and in addition to the traditional morning after, you also get to combat a lovely flare.