5 months ago I went through and called every single psychiatrist's office that my insurance covers. Almost 60 different practices and only 4 responses. Most of them weren't taking new patients or just never returned my calls, a couple of them offered me their nurse practitioner but I declined. I need a Dr, I understand the differences between the two but I needed a psychiatrist. Tegretol's side effects had become too much. I couldn't remember one minute to the next, I was always unbelievably tired and it was just getting worse. I experienced long bouts of mental confusion which made meeting life's demands nearly impossible. I developed something else that I didn't know existed, I ended up with hypothyroidism. I needed to get my medication reevaluated and by a psychiatrist.*
One office was able to take me in and I scheduled an appointment but when I got there they informed me that I will see their nurse practitioner, something I specifically told them I didn't want. I wrote down the name of the Dr they told me I would be seeing and expressed that my appointment was confirmed over the phone with this doctor. I was told that I must be mistaken because that Dr isn't taking new patients. There I was, frustrated about my medication side effects (and they were getting worse and worse each day), spending my lunch breaks calling Dr office after Dr office, all just to take care of myself and my bipolar disorder and I landed in some sort of bait and switch situation. I even had to wait 3 weeks to get into this place and it had the shortest waiting period, the next one being 6 weeks out. I just want to take care of myself.
I had already paid for the visit so I figured I might as well get something for my copay, which is just a symbol of time wasted at this point. I sat down with the NP to give her a shot. She looked like my grandmother, who was also a nurse, which instantly pulled at some heartstrings. My grandmother had bipolar and was probably the most special person to me during my childhood. I made the mistake of making a decision out of emotion, something I rarely, if ever, do. I put my well being into her hands.
She means well and I honestly believe she's done the best she can. She did not half ass her effort as a medical professional, and she genuinely cares about me as a patient, but her best has completely screwed up all of my hard work. She has no ill intent and is sweet as can be but she has created a fiery psychological hell that has all but consumed me.
I was on Tegretol at 400 mg for about 3 years, that's the usual max dose (some people are prescribed more, but it usually maxes out at 400 mg). It's an anticonvulsant usually used for for patients that are prone to seizures, but it has also been found to have mood stabilizing qualities. It's something your body has to be weaned off of slowly, very slowing, usually cutting the dose by 10% every 2 weeks. That's not the instructions I was given. I was told to cut my dose in half every 2 days so I did. A week and 2 days later I'm in the middle of the country on a bike ride when my whole body gave up and started shaking violently. My muscles suddenly gave out and I sat on the side of the road with a fellow rider who was gracious enough to hang with me for a while and feed me snacks with plenty of water to make sure I was ok. He and another guy thought it was a low blood sugar issue but I know how to fuel up before a ride and during so I ruled that possibility out, but I've also never had my muscles give up on me while my body trembled from head to toe.
I was able to pedal the 20+ miles back. They were some painfully slow miles but that's all I had. I went home that day and spent my afternoon throwing up while still shaking. Then I started getting crushing migraines. I had never had a migraine before but I have given birth. It was like my skull was trying to birth a large boulder. All the windows had to be blacked out, the dogs couldn't be in the same room as me, there were ear plugs in my ears because all sound was like a pickaxe to my head. I constantly had an ice pack resting on my forehead, and there was a terrible pain in my eyes. It was like they were trying to press themselves out of each respective socket. There was no relief. Pain meds weren't much help. One of my prescribed medications interacts with the majority of over the counter headache options, and the one that was supposed to be safe caused my heart to race and caused major panic attacks.
It was then my husband hopped online and figured out I was going through withdrawals associated with anticonvulsant medication. I developed a stutter and involuntary hand movements that were embarrassing. I'm not ever self conscious about much but the way some customers in the shop would look at me made me feel like shit. It's already hard to get people to trust and respect you as woman in a bike shop (you'd be surprised how quick we can be written off because of our anatomy) but it's even harder to be taken seriously when your hands keep pointing, balling themselves up, and awkwardly jerking around in the air without the ability to stop them. I was even made fun of by some people. Had a guy at Staples ask me "what the hell are you doing with your hands?" Thanks random asshole. That's exactly how you should talk to people. I'm assuming he goes up to people in wheel chairs and asks "what the hell are you not doing with your legs?"
The stutter that developed made speaking difficult because I knew what I wanted to say but it took forever to come out, if it even came out at all. It was really frustrating, especially for someone like me who normally talks too much and at over 100 mph. Not being able to get the words out felt like the last second or two before you absolutely have to breathe after holding your breath for as long as humanly possible. It's a pressurized panicky feeling, a built up frustration that you can feel in every part of your lungs and skull. Those sensations are the force behind every word you can't get out. The interesting and somewhat funny part was how nice strangers treated me when I had a stutter. People sympathize better if you have an issue that they can see.
If I had to choose a worst of the worst side effect from the withdrawal stage it would be the inability to sleep. If I got 5 hours it was a goddamn miracle but that miracle didn't happen but 5 or 6 times during those first 3 months. I had been on sleeping meds for almost 7 years at this point but they were ineffective; my brain was not going to let me rest. I spent 3 months going through withdrawals and all while sleep deprived. I don't know how most people are but my brain shuts down if I don't get adequate sleep. I felt like the living dead.
When I saw the NP during all of this and told her what was going I watched her hop on her phone and google how long the withdrawals process could take. Right in front of me.
I'm telling you, she's doing the best she can. She was genuinely concerned about what I was going through and if she had had any prior knowledge that any of this would have happen she would have weaned me off slower.
But she didn't and my life was hell but that is only the first half of this experience.
During the weaning process I was prescribed a new medication- lithium (new to me). The NP started me on the highest dose of lithium while she was yanking me off the anticonvulsant. Your body needs to be slowly introduced to lithium, just like it needs to be slowly taken off Tegretol. Lithium's side effects went wild almost immediately.
Once the withdrawal shaking died down I was left with uncontrollable hand tremors. My hands wouldn't stop shaking which made every day gestures arduous. I couldn't steady them long enough to put my house key in the lock. I couldn't button my shirts (still have trouble with this one). I couldn't put on my makeup nor could I hold an object for too long before it rattled right out of my grasp. What use to be simple movements became endlessly pathetic attempts; picking up a pen had become a frustrating 15 second cat and mouse game. Turning the page in a book took military level planning. I still have bad hand tremors but they are slightly less in intensity.
I had trouble standing up because my equilibrium is so greatly affected by the lithium. If I'm not in motion I almost always have to sit down because my body sways around and focusing on shifting my feet to keep myself upright is all I can pay attention to. I haven't been on a bike since this whole mess started because I figure if I can't stand up then how the hell am I going to balance on a bike? I don't want to injure myself, or worse, endanger other riders.
Forget closing my eyes while standing up, I would save more time by just throwing myself to the ground. Simple daily tasks like closing my eyes in the shower to rinse my face off become difficult, I actually have to brace myself because once they're shut I essentially have no balance. I try to shower with my husband as much as possible because I'm afraid of falling over and injuring myself. Well, that and I like seeing him naked.
Lithium is a salt so hydration- the right balance of water to salt intake- is essential. That being said, it can also cause water retention and the good news is that I also had that side effect in spades. My body decided to store all the excess water in my stomach, which caused it to swell up to the point where I looked pregnant. I still have a bit of a swollen stomach today but it's not as intense. It just look like a "drink a lot of beer and over invite all of you neighbors to all of you carport cookouts" kind of belly now. Looking at you Lakeside.
Then the fun really started. My hair began to fall out.
I noticed in the shower that there was an increase in the amount of hair flowing down the drain. Then I noticed strands of hair on the sink, all over the floor, choking up my brushes, and even falling out as I prepared food (don't worry, I picked them out). I couldn't wear my bangs straight across my forehead like I usually did because my hair thinned out to the point where my bangs had sections too thin which created gaps, causing the whole delicate hair to forehead ratio to become unbalanced. I have bangs because my forehead is shaped funny, I don't need a funny looking forehead with half assed clumps of hair scattered all over it.
At this point I looked like a balding pregnant woman who was casting spells with my exaggerated, involuntary hand movements.
I also had menstruation cycles that were 2 weeks long and experienced frequent bleeding inbetween periods. Uteri are fickle, somewhat wild creatures so I didn't feel any real sense of alarm until one of my periods surpassed 2 weeks in duration. I visited my gynecologist and after checking for and finding no physical abnormalities she was convinced it was part of my thyroid's process of getting back to regulating my hormones since it was under functioning until 2 months ago. She said it could last a couple months or 6+ months.
Great. Now I'm a bleeding, balding pregnant woman casting spells.
It also affects your digestive system and can cause constipation. I've had horrific constipation, sometimes I won't be able to go for 4-7 days, even though I take stool softeners and have bumped up my already high fiber diet to a super high fiber diet. I have to drink a lot of water and apparently that should help but it doesn't. When I finally have to go my stools are so hard and massive that it's incredibly painful and causes bleeding. I'm so sore afterwards that it hurts to sit down for an hour or so.
Now I'm a bleeding, balding pregnant woman casting spells who can't poop.
So far lithium sucks and it's benefits have been minimal. I blame being put on the (what is usually considered) max dose on day one. My body didn't have time to adjust and the intensity of the side effects reflect that. I asked the NP if we could drop the dose down in order to help my body get used to it and she gave the go ahead. That was a disaster, not her fault this time. I was worse off psychologically and felt like I use to before I was diagnosed and medicated. The reduction in side effects was minimal. After 1 week of 900 mg I went back to 1200 mg. Took about a week for my body to catch up but when it did I didn't feel "better," just less worse.
I will say there has been one beneficial side effect which goes hand in hand with it's worst side effect. I've lost 8 lbs, which is interesting because lithium is not known for weight loss, it's actually infamous for excessive weight gain. It's not unheard of by any means but it's relatively uncommon. I've also lost that weight during a time where I haven't been riding, which means the extra 2 to 3 thousand calories I would normally burn each week haven't played any role in my weight loss. I like this a lot, especially since Tegretol affected my thyroid to the point of gaining weight even while using calorie control and constant cardio exercise. Back then, if I even looked at a picture of a cake or some muffins on Facebook or in a magazine I would instantly gain a pound. The weight loss might just be the result of going off Tegretol but lithium has not added any more pounds onto my balding, pregnant witch body, and that is a very much welcome result.
Have I mentioned bacne yet? Because I have also developed that. Zits have broken out across my back, but has left my face unaffected. Most reported acne cases with lithium report acne on their face. My face has actually cleared up almost completely, something I was struggling with for a couple of years (probably caused by low thyroid function). But yes, I also have acne on my back, or as we said in middle school "bacne." It doesn't bother me too much as it's on my back which means I don't have to stare at it often, and it seems to be a pretty mild case anyway. I also have 25% of an unfinished back tattoo that does a good job hiding the bumps.
Now I'm a bleeding, balding pregnant woman with "bacne," casting spells who can't poop.
I have to get blood tests often because lithium is poisonous and it's clinically effective level is a hairline away from its toxic level. I find it ironic I have to take something dangerous in order to be healthy. My lithium blood levels are really low for being on such a high dose. Drinking too much water can flush out too much lithium out of your system so I tried drinking less water but it didn't seem to help. I don't want to raise my dose, the side effects are already too worrisome. It also makes me so unbelievably thirsty, causing my mouth to dry out and my breath to smell like hot garbage even though I brush, floss, and use mouthwash daily.
Now I'm a constipated, bleeding, and balding pregnant woman with "bacne,"casting spells with a mouth that smells like a sun baked port-o-potty.
I am the lithium witch.
I'm not a fan of lithium so far but that's because my body doesn't seem to want to cooperate with it. Not everyone has these experiences with the drug so if you feel discouraged about trying it just remember that this story is
my personal experience and should not be taken as medical fact. A lot of people have had really positive experiences, mine just doesn't happen to be one of them.
*The psychiatrist I was working with specialized in ADHD and addiction. I had been going to him for almost 8 years due to my ADHD and my brother use to go the same office for addiction counseling when he was still alive. I was diagnosed, treated, and properly medicated while in Pittsburgh and after moving back to Richmond I only needed a Dr to refill my prescriptions in order to maintain my medication regimen until I needed to move on to a different Dr. When the Tegretol became a problem he referred me to another Dr who is better suited to treat bipolar and other behavioral disorders. That particular Dr doesn't accept insurance and the initial visit was about $400. Needless to say I did not take that option. Gotta give a shout out to Dr. Bright. He's a great man.
