Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Sunday, March 03, 2013

The Anti-Jen drug, or a better explanation of my current med situation

I posted the other day that we are in a holding pattern waiting for a new antipsychotic to be relased. I'm sure I've said that before. I should explain. Also, Jean Grey as she often has done for me told me about a drug called Ascendin that I'd actually never heard of and thought maybe I could ask about taking it instead of the MAOI. I can't. The situation right now is that I am in a corner. There are meds I haven't tried or that didn't get a huge trial but there are reasons for not being able to take them. One antipsychotic that I always blank on the name of sounded great until Dr. Brain found an interaction with Seroquel she wasn't willing to risk. Anti-psychotics were a tricky business for me for a long time and it was hard to get one I could tolerate. The first one I took, Geodon, caused extrapyrmadal symptoms, which are unreversible if the med isn't stopped quickly. In my case I spent several weeks sticking my tongue in and out of my mouth like a snake, without control of it, even when my tongue would bleed from rubbing on my teeth. I think I was on Geodon maybe 4-6 months before this became a problem. Next we tried adding Abilify. I don't know if she planned to switch since Geodon didn't work quickly for me and I was in a bad place. Abilify gave me my first case of akathesia, the must move constantly and without stopping syndrome that hospitalized me in Sept. 2012. Those first 2 were in 2004. We waited probably a year to try anti-psychotics again and this time it was Risperdal. I felt better on it but it increased my blood pressure badly. At that point we knew antipsychotics would be tricky. About 15 months later I re-tried Risperdal to see if the blood pressure issue was definitely linked. It was. Several months later I think we tried a 3 day pulse of Risperdal and my blood pressure went up again. So we knew that was out. After those reactions I had cause entered a tricky spot. I can't have any older antipsychotics because the risk of extra-pyramidal symptoms is higher, and when I developed akasthesia again last fall from a related but not psychiatric drug that meant I will be at risk for movement disorder with any drug that can cause it, one of which is lithium. Since lithium is vital can cause similar reactions. When I finally went on Seroquel it was with the knowledge that it didn't have a huge chance of working and it did have a good chance of causing problems. We tried to counter that by taking months to reach a therapeutic dose. I was off work for I think 4 1/2 months and only on a therapeutic dose for maybe a month of that. It has worked for me and I haven't had issues although after my last akasthesia my psychiatrist doesn't want to increase the dose further. but now she doesn't want to increase. I'm on a pretty high dose but have been on more in the past We took a chance and tried a pretty high dose of Seroquel along with a good bit of Zyprexa if you're already on a lot of Seroquel trying to treat that and it didn't work. Zyprexa is a less than ideal drug for me because I have a family history of severe, fatal, limb and kidney losing diabetes that hits pretty much everyone between 40 and 50. It also had no effect and I'm allowed to get rid of it so I guess it's very unlikely we'll be returning to it. Seroquel though works pretty well and if some combination of meds that helped depression and anxiety safely were found I might not need an addition. The last addition we tried was Latuda. It was new and I was my doctor's first patient on it. She thought that sounded like a great drug and everyone I've met on it has loved it. I hated it. It made me worse and I was off it quickly. Then there are the other drugs. MAOIs seem to work for me. I still don't know what is happening with that but that's another discussion that you don't want to hear. Michal knows. It's not pretty waiting here at this point. MAOIs can sometimes be supplemented by a tiny dose of a tricyclic antidepressant. However when that was tried in the hospital last time nobody was comfortable with it. I didn't even remember I was taking it because it was not very effective, and I wasn't in a good place to monitor side effects/ notice if they were dangerously interacting. There was also a change from the days when I had enormous amounts of imipramine, another tricylic around. Tricylics can be lethal in overdose and I'm not allowed any more of that than possible. I had to earn my way back to klonopin that I'd taken for years because of the risk, even with monitoring. There is one med left that might help with sleep but I've not been considered safe enough to have it either. My doctors really took the suicidal stuff seriously last year. It's so blurry but I was serious enough that no chances apparently will ever be taken again. Dr. Mind has told me that he felt last year that if I attempted suicide I would have succeeded. It seems that they still believe this and that until I am more comfortable with life I'm going to be considered at risk. That means no meds that are potential dangerous in any dose higher than absolutely necessary. That means no tricyclic antidepressants, the SSRIs and variations don't work for me at all, so MAOIs it is. I'm sure the pills will be less safe and I'll only be allowed a minimum of them. It's hard to overdose with patches which is one reason Dr. Brain does not want me off them. I don't know what my suicide note said but it scared the people who treat me into this state of not really being ready to trust me, possibly ever again. Again, this is based a lot on their belief that I am serious and would succeed. I believe I must have laid out some plan in that note which really made them cautious. I don't know. The drug that Jean Grey mentioned, Ascendin, is like all the med problems I have at once. I wondered why I'd not heard of it; I've been on so much and discussed so many other options that it's rare that I've not heard of something. It would be a great drug if they wanted to see what horrible things could happen. It's a tricyclic for one thing, so it has overdose potential. I think they once said I've failed so many tricyclics that they weren't likely to work, although this one is different. It also has properties of the older antipsychotics which means movement disorder risk. Andit's hard to determine if it is ok with MAOIs although my doctor would know that, although she'd rather tweak elsewhere than combine. We're finding creative solutions. I was on Neurontin for a while in 2012 but it drugged me. Now after we brainstormed about sleep and anxiety I'm on a tiny bit and it helps. I get to sleep nearly every night by 3 and the anxiety is a little more manageable. So there are things that can help, they're just hard to find and sometimes it requires saying "this didn't work before but what if we try a tiny, tiny bit and see" and then it is ok. Some drugs can't even be tried that way, but when we find something it usually is an improvement if only tiny. Neurontin is strange in that I fall asleep but I never get tired. One minute I'm reading and the next I'm out cold. I am supposed to be adjusting to Nuvigil to help re-organize my sleep but the depression and some panic attacks just about when I should fall asleep haven't made that every easy so for now I'm working on that one. I would like to get on it because when I've taken it and seen my mom she immediately sees my cognition improve a bit, or at least my speech does. So that's the long story behind my med woes. They don't want to try things that I've failed before or failed the close cousin before, they don't want movement disorders, they don't want further cognitive effects, they don't want me to be able to kill myself easily. All good things I guess butit does make it tricky. Meds, complicated, life story. Copyright 2006 www.masterofirony.blogspot.com


Ruby said...

Hi Jen,
I've only commented once before, when you were in the process of applying for disability services.
My son has Bi-Polar, ADHD Sensory processing disorder. He's 18 now, and attending Job Corps to learn welding.

I too have bi-polar disorder, but also have fibromyalgia, and severe chronic migraines. These are all debilitating conditions. I know you know that about bi-polar first hand. I'm truly sorry for you loss. I know how much it hurts to suddenly find yourself in position that you either never expected, or didn't think would happen anytime soon.
I was just determined eligible to receive DVR services, and they classified me as "persons with most significant disabilities". I'm reeling. I feel gut punched. I know i have some serious issues, but didn't expect to be at the top of the list. It sucks. I don't want to be there. I don't want to need the help that I know I need.

Before today, I had an abstract understanding of what you've been going through, adjusting to all the changes and loss in your life. Now. Well, now I get it. I can empathize.

I'm sorry, I'm venting in your comments, and you don't know me. But I wanted...no...needed to vent to somebody that is likely to "get" what I'm feeling right now.

I am so very frustrated and scared. I've obviously been lying to myself; my brain is way more screwed up than i ever wanted to believe/accept. I guess I'm at a point where I have no choice.

Take care Jen. I hope your cat feels better soon, and I'm so glad your doctor was able to make the arrangement for the patches. I'm sure that was a huge relief.


Just Me Jen said...

Hi Amber. Thanks for you comment. It's fine to vent here.

I went through the DVR (I usually call it voc. rehab even though that's not correct; it was what I learned in grad school and never corrected) back in 2007. Ultimately the caseworker sat me down and told me that I wasn't able to work and should go on disability. It was a terribly hard thing to hear. My doctors did not agree with him and both felt strongly that I should work as long as I could. Later I found out that they both felt that I needed to be the first one saying that I couldn't do it.

I remember what I felt like the day I was told by voc. rehab that I needed to stop trying to work. It was pure horror. Partly this was because I knew the doctors did not agree but partly it was that it put my disability into context that I'd never really seen before. It sounds like you are experiencing something similar.

I learned then to really do some soul-searching and see if you agree and if you feel that they are wrong and that this is coming from your brain and not your heart that you should question it. I didn't enjoy the conversation i had with the voc. rehab person when I told him that I wanted to keep working and needed ongoing support in some fashion (I had another assessment, this time from an OT who came to work with me and provided education to my employers. She supported working with some supports) The next few years had 2 times I was fired and thought perhaps that was my sign (one time though was a company well known for firing experienced therapists and replacing them with new grads, saving $10-$15/hour), then I had a few years of being good at what I was doing. And having those last few years when nobody questioned my ability was a great gift.

I guess what I'm saying is that I know the confusion you're feeling. I felt it several times beginning in 2006 when I was on disability for months and first because aware I was not likely to work as long I wanted. Oddly I wrote that I'd be lucky to work 5 more years and I knew it. I worked 4 years, 11.5 months longer. I also know that testing or DVR people don't know you as well as you do and that creates a really hard task of deciding if that label is what you agree with or not.

I also know what it felt like last year when my disability was approved in a matter of weeks. I had triggered an automatic approval via a computer program they use that identified people who will be given benefits without question, saving months of work. Psych patients almost never are approved on this system. I was and I knew that it meant I was really, really sick. It was hard to go to support group and say that I'd been approved so quickly when others were waiting for years and the only explanation I had was basically that I was sicker. I was, but even I thought it was just acutely, not that I was the one who couldn't function, period.

I guess it's a lot like accepting the diagnosis all over.

And feel free to come here any time. You can email me at masterofirony@gmail.com but please comment that I should check my email because I don't check that account very often.

Just Me Jen