I’M ANGRY. I REALLY AM. The Mentally Ill suffer daily for many reasons. The stigma of being Mentally Ill, the loss of friends of family, the loss of work and sense of purpose, the loss of drive to do anything or think. The list goes on.
I can’t tolerate the medication merry go round it takes for a Bipolar patient to find the right combination of drugs to help them feel somewhat like a person. If this ever happens. Almost ALL BIPOLAR MEDICATION LEAVE YOU SEDATED. There are very few that leave you feeling like you actually want to participate in life. The ONLY WAY I have been able to do things like go to Florida is because I take Adderall to counteract the drowsiness of the Viibryd and Topamax I take.
My sister in law forbids me to say the word Adderall. She says it’s a “Vicious drug that leads to nothing but heartbreak”. It wasn’t the Adderall that caused the heartbreak it was my niece. Mental Illness and addiction is practically a given in our family. She had already been diagnosed with Borderline Personality Disorder and she was already using Heroine. My ex sister in law chose to blame the Adderall instead of acknowledging the harder stuff. There is no such thing as “Gateway” anything. Addiction comes from some deep routed problem within you. It doesn’t help if your family has a history of it. I don’t believe that one drug or drink leads you to addiction. It has to be in you to begin with.
When I see some of the medications other bloggers are on I’m mortified and pissed. No wonder they feel so horrible. I know these meds because I’ve been on most them myself at one time or another. I’ve never been on two or three of them at once! It would’ve been like Night of The Living Dead. How these poor people even get up to go to the toilet I don’t understand. The over medicated are just as bad as the under medicated.
IF YOU ARE A DOCTOR AND DO NOT KNOW HOW TO HANDLE YOUR MENTALLY ILL PATIENT OR HOW TO MEDICATE THEM REFER THEM TO SOMEONE WHO DOES!!!
There’s no shame in it. Just f*cking do it! People are going to eventually die because of this. Either because they can’t find a way out of the darkness they’ve been put in or because they are simply over medicated. Seriously. A patient being prescribed 2 mood stabilizers, 2 antidepressants, and a pinch of ADHD medication? I’m sorry an antidepressant and an antipsychotic they use to sedate people with 2 different stabilizers. I’m officially disgusted.
Unfortunately, all too often Physicians will rely on what a Sales Rep. tells them while pitching whatever Drug they’re trying to sell. My Psychiatrist has a problem with this big time.
I picked up my prescription for Topamax this morning. This is my mood stabilizer. I’ve been on it for years but have been having problems since I went into kidney failure a year ago. When I went to pay for it the pharmacist said “You really need to read the new information about this drug. Some of it relates to you.” I said ok and went home. when I did read the new information I wanted to punch something.
Here is the new info: Recent studies have found that Topamax can cause the following in some patients, we have found it to be about 1 in 500.
- decrease in vision
- blockage of fluid in the eye causing increased pressure (Secondary Angle Closure Glaucoma)
- These issues can lead to permanent loss of vision
- an increased level of acid in your blood
- leads to Metabolic Acidosis causing (osteoporosis, osteopenia, and kidney stones)
- fatigue, no appetited, change in heartbeat, trouble thinking
Your Healthcare Provider should be doing regular blood tests to measure the amount of acid in your blood. Nope. Never.
Topamax can also make you feel irritable, anxious, depressed, restless, agitated, impulsive, and aggressive. Imagine that.
I fit everything on here but the scariest thing is I told him about the Eye Doctor being worried about the pressure behind my eyes and he fluffed it off. I’m really off today. I’m mad because my sister isn’t taking phone calls. Our dad has major surgery in the morning. But why should that interrupt her day at the beach? I know I sound like a bitch. I just wish I say these things out loud. My day was filled with being peed on by Dutch at the Vet’s and my Dad told me to “Eat shit”. I talked too much at the Vet’s office because I haven’t talked to people in a long time then felt embarrassed. I then cried in the car on the way home. Something has to give soon.
How many people have had bad experiences with their medications only to be told by their Doctor that it COULDN’T POSSIBLY be their meds?
It happens to me often. Around the third time of me saying it, a light bulb goes on in the same Doctor’s eyes and he agrees with me. Why do I have to suffer for almost a year before they believe me?
I think that Topamax isn’t doing me any favors. It’s making me cry and making me cranky. Even with Adderall I just want to sleep. I think everything I do is wrong. My sister and ex sister in law keep saying I need to “be somewhere”. Where the hell do they think that “somewhere” is exactly? They don’t want to say it but they mean a hospital. Neither one of them have ever been so it’s easy for them to say. It isn’t like going to Club Med for a few relaxing weeks of fun in the sun where we make S’mores and baskets. Idiots. I’m extremely touchy about the situation because I’ve been more than once. None of my experiences were pleasant and I also didn’t receive any kind of help. So now I hide in my room and cry.
I recently stopped taking my mood stabilizer Topamax. Due to a problem with my insurance I couldn’t afford it for a week. During that time my morning crying and irritability seemed to disappear. When I worked the insurance problem and started taking it again the crying and anger came back.
I now feel better but I think I might be in Manic mode. I am more impulsive, my judgement isn’t exactly great, and I just want to run. I want to do things I never got to do and my mind races with ideas. The only thing stopping me is my health and money. I’m agitated and can’t sleep. I looked into flying to Florida for a Rock Festival by myself. I don’t know if this is good or bad. I have not been socially active in years. I’m always afraid my dad will get mad if I go out during the night. He thinks this is the only time people will drink. If I mention a concert or something similar he gets upset. I have stopped living so I don’t rock the boat with him. I have no friends left and my family doesn’t really like to spend time with me. I’m too sensitive and dramatic. They limit themselves to a quick text.
With my health problems and the future being unclear I don’t understand why I can’t take a trip or do something I used to love. There are always a hundred questions. No one thinks I can handle a social environment sober. After seven years of sobriety how am I to know if I stay home much of the time. I only leave the house for groceries. This isn’t living.
I also can’t trust myself to know if this is the Manic part of me or if I really do want to join the land of the living again.
Some of you may know that in July I went into life threatening Kidney Failure. I really didn’t have any unusual symptoms except for swollen feet. It’s a good thing something inside of me said “go to the ER”. I was close to death.
The Doctors put stents in to keep my ureters open so that urine wouldn’t build up in my kidneys. They knew the problem was with my ureters but they didn’t know what or why. I had several biopsies that showed irregularities but no reason for Kidney Failure. At the time the Doctors were concentrating on my bladder and not really on my kidneys.
They didn’t find out until December that my kidneys had been damaged beyond repair. The right on was only functioning at 19% and the left was working too hard to make up the difference.
I went to several specialists with no answers. They all agreed there was an obstruction that had to be taken care of they just didn’t know where or how. One Doctor wanted to put tubes in my back going to my kidneys. I was scared. When the Doctors tried to take out the stents I would start to go into kidney failure within 24 hours.
The last Doctor I went to is a Nephrologist. He didn’t seem to take my condition seriously because he works with dialysis patients daily. He did come up with Retroperitoneal Fibrosis.
This is an autoimmune disorder where abnormal fiber like tissue occurs behind the membrane that lines the cavity of the abdomen. The growth spreads to affect the ureters or a mass forms and presses on the ureters causing a blockage.
The symptoms for this are:
- pain in the lower back
- pain in the abdomen
- weight loss
- loss of appetite
Sounds like the side effects of most of my Bipolar meds. Topamax is known to cause kidney stones and may contribute to the Fibrosis. I’ve been on it at a high dose for years. No one said anything. They still didn’t say anything after I went into kidney failure. No one questioned my medications.
It’s difficult to get a biopsy for Retroperitoneal Fibrosis. Most masses are Benign but can become malignant. There really isn’t much of a cure for me at this point. I probably will have to have stents for the rest of my life. There were questionable findings in my biopsies but I guess not enough to consider cancer even though everything I read says you should undergo extensive cancer screening including an entire body PET scan.
The Nephrologist never called to tell me any of this. He just wrote up his notes and I read them in my file. I called twice to get answers and was never called back.
All of this has been frustrating. No one really wants to help because it’s rare and complicated. I’m tired of all the tests. I decided to take a break from Doctors for a month or two. I need to reconsider what I want to do and if I should consult different people in the medical field. I feel like crap but at least I have something that makes sense.
Everyone in the Mental Health Community has their own opinion about medications. Some swear by a “no medication” lifestyle, and use diet to control their Bipolar symptoms. Others will tell you the only way to go is Lithium. And still you have patients that have had great success with ECT or a mix of antidepressants with a mood stabilizer. No one can tell you what’s right for you. Only you can judge your reaction to a med or procedure.
My aunt constantly goes on and on about Lithium and how great it is. She has been on it for many years. All I remember is never wanting to be around her. She was always loud and sounded like she was a little drunk. This is what formed my opinion of Lithium. I also have existing problems with my liver and kidneys so why take the chance? I have given up repeating myself so now I just say “yeah” when she starts in or I don’t answer the phone. This is cruel to do because I now know people do it to me. But she also likes to go on about my mother’s death and that I can not do.
There is too much judging within the Mental Health community over who takes what or who works and who is on disability. I have seen arguments about marijuana use versus meds and alcohol, it’s all detrimental to the cause as a whole. If we stigmatize each other how can we expect our peers not to? I take Adderrall with an antidepressant, a mood stabilizer, and an anti-anxiety med (as needed) and boy to hear it from people. What’s the Adderrall for? It’s constant. The pharmacy is the worse. It is actually used quite a bit in psychiatry. For some reason it helps my stutter and I don’t cry as much. I can function a little bit. When I tried going down on the dosage to see what would happen it was horrible. Within a few days I was waking up crying and my stutter was at a point I couldn’t talk at all. I forgot to mention I have tremors in my hands too that it helps with that came back. I also couldn’t stop falling asleep. I would wake up suddenly with drool running down my face. So I’ll be keeping that for now.
As far as the antidepressant goes I have noticed a change. I am cycling often. My depressive episodes are more often and last longer. I have read that this can happen if you have been on them for a long period of time. I have been on some kind of SSRI since I was 17. I am 42 now and was not diagnosed with Bipolar until 37. I have been sober for a little over 5 and 1/2 years. I have had 1 round of ECT and did not find it pleasant. Plus it shot me into an extremely manic state. I thought it was funny the Dr. was worried. I have also been on the ones that begin with a M. MAOI or something like that. They were a no go too.
What I am saying is we are all wired differently. Scientists admit they will never know all there is to know about the brain. My own father, my hero, thinks I need to just tell myself it’s ok and I’ll be happy. That alone rips my heart out. No matter what I give him to read or what I tell him he still thinks it’s a matter of will. Who would ever chose to live this lonely awful aching existence? To feel worthless most of your life. To always be a watcher in life and never really living it yourself? This isn’t what I chose and when I try to take part everything in me is fighting, telling me I can’t, but I keep trying. I have to or there’s nothing left.
So say what you have to. I’m going to do what feels right for me. And I’ll fight for anyone else that wants to do the same.