Genetic Test for Medication

When I first started seeing my new psychiatrist she asked me if I’d had genetic testing to determine which medications would work best for me, I hadn’t, so she asked if I was interested. Of course I was interested! I was then given 2 swabs to rub on the inside of my cheeks and off they went to the lab at GeneSight, within a few days the results were back.

You can read a lot more about GeneSight and see an example of what an actual test looks like on their site. To see a detailed example of  test results click here. It will take you to a pdf. I was going to show you some of mine but mine are black and white copies and aren’t nearly as pretty as the actual test results, and mine has over 9 pages of information. (I think some is repeated to give more in-depth information about it, but golly, that’s a lot of information.) I will however talk about some of my results.

Sample of one page of a GeneSight report.

After receiving my results we started going though it all to see what medication therapies would be best for me. It was very surprising to me how many medications I’ve been on in the past that were listed in the “Significant Gene-Drug Interaction” category. I also found out that this test really didn’t show which drugs I would have severe side effects to. For example, all antipsychotics. There are a few that are listed as “Use As Directed” that caused me severe Akathesia (the need to constantly move) and muscle twitching, which can become permanent.

We went through all of the medications on the list for Antipsychotics, Antidepressants, Mood Stabilizers, Anxiolytics and Hypnotics, Opiods and Non-Opiods. I’m not really sure why I was tested for opioids and non-opiods but I will be taking that to the hospital the next time I have surgery. (hopefully that’s never)

I’ve been told I’m a complicated case. I’ve tried a lot of medications in the past, some worked for a while and stopped and some never worked. We started going through one that worked for a while first. Lithium. When we tried Lithium I started to show toxic signs before I got to a therapeutic dose. We tried Depakote, I felt better and got to a therapeutic dose but it caused so many side effects that I couldn’t take it. (my stomach hurt so much and caused me to have severe retching, it was most painful, and this went on while I was on antibiotics so I blamed it on the wrong drug for a long time, finally we figured out what the culprit was and I had to stop it.) So then we tried Vraylar, an Antipsychotic, almost immediately I started having symptoms of akathesia. It wasn’t as bad as it was with Latuda, but it was starting, so I was put on a drug to help control them. It did but I still had this constant hum that made me feel like it was going to start all the time and I was still a little manic. You may remember the post about me talking all the time. I saw my psychiatrist during that time and could not stop talking during that visit, it was most disturbing to me. I can’t even remember what she did to change my medication at that time, I believe she added another medication. I know at one time I was on five drugs from this one person….or was it six? I’m still on a ton, but I’m tapering off 2 so that will make it less and one of those should also take over a medication for a condition I’m being treated for by another physician, so that will take away 3 drugs all together. Score.

I’m sure I’ve completely confused you. It confuses me!

Let’s see if I can make a little more sense than I have been….yes I seriously doubt it too, but bear with me. The last visit I had, I took that gene test and was ready. I told her what I had taken before that seemed to work for a long time, Topamax, all by itself, but we got to such a high dose I has severe cognitive issues, so I’d like to add it to the Lamotrigine I’m already on, both of these are mood stabilizers, that way I don’t have to have such a high does of Topamax and shouldn’t get to the point that I have cognition problems. (I was over 400mg before now I will be at 200mg, much more doable I think) Topamax can also help my migraines and my Idiopathic Intracranial Hypertention, so that’s a great thing.

I’m also seeing another psychiatrist on the 28th for a second opinion. I’m not thrilled by how this has been handled, all the drugs just pushed on me, and at one point when I was at my worst and asked what to do if I was in crisis, I did not feel it was taken seriously. I was told to go to a certain hospital, but was not given the information. How is someone who is in the throws of a severe mixed mania episode supposed to remember what psychiatric hospital this woman spoke of to find out how to get there, and I was not in the frame of mind to ask her to write it down. I was a complete mess at the time. It’s times like that that patients really rely on their health care professionals, and too often they fail to live up to what is needed.

I’m still a lucky one. I have insurance and can actually go to a psychiatrist and get help, there are countless others out there who can’t. We often tell people to reach out when they are in pain, but if they can’t pay for help, they are simply turned away. This country treats their citizens like garbage. If it’s unsightly, throw it away.

Please support mental health facilities who treat those who can’t afford care, there are so many people who are homeless because they have no where to go for treatment. Take time to be kind.

Have you tried GeneSight? Would you if you haven’t? Do you think it’s beneficial?

I do think it’s a great place to start. It’s telling me if certain drugs metabolize faster or slower than they should, and well all kinds of things. Be sure to read more at their website if your interested.

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My Doctor Treats Me Different – Mental Health Stigma

image by pixabay.com

For the first time since my diagnosis in 1996 I’ve felt that I’ve been treated completely differently because of my mental illness. Perhaps it was because I mostly stable for so long and my few people have ever seen me have an episode, but this came from my doctor.

Since we moved to Tucson 8 months ago I had to get a new PCP (Primary Care Physician), I initially wasn’t sure about her, she seemed a little too friendly, and one of the first things she said was that she wouldn’t write a prescription for diazipam. (I didn’t ask, I’d get that from my ENT anyway), but I gave her a chance. I admit I went in there not expecting much so I felt that’s what I got. The second visit was much better. Every time I’ve seen her she hugged me, until I told her about my mixed mania episode. Now things are different.

I saw her on Friday for back pain. I felt like she dismissed things I said. I tried to talk about the back pain and she asked what I wanted to do about it. I said, “fix it”. “How do you want to do that?” I jokingly said, “I want you to fix it.” and I laughted. She said, “I can’t do that”, in a very abrupt way. She immediately said she would refer me to PT. I tried to say that I wasn’t sure it was muscular, I was concerned it may be arthritis. “No. You need PT”. She normally talks well so I can understand and is friendly, on Friday I had to turn my cochlear implants DOWN because she was so LOUD. She didn’t even want to look at my back, when I said where it was, she said she thought it was my lower back….”well bitch if you had asked you’d know!”, I thought to myself. She touched me and said, “I expected it to be tighter”, in a much lower voice to my husband. I tried to tell her that it feels different, but she dismissed me. I needed to go to PT. Fine, I’ll go to PT and I’ll find a new PCP! (you’d think she thought I was seeking drugs but I’m allergic to opioids, and she knows that, so WTF? I just wanted a discussion and maybe an xray)

I may have made the grave mistake of telling her about my episode, but when my drug list started to change, that would be a pretty obvious clue things were changing. I also mentioned I had back pain as a side effect from akathesia due to a side effect form Latuda 2 years prior, I should not have said that…..WAIT!……………

What am I saying?? I should have been able to say all of that!! My general doctor should be able to be aware of my mental health issues and not start treating me like I’m not able to think for myself.

I will be firing her soon and I will make sure that she and the office know why I am doing so. This is crazy, I’m not!

New look and a Mini Me, Update

I hope everyone had a magical holiday season. I hope you didn’t kill anyone. I know I wanted to a few times. Luckily it ended when it did.

I’ve started a new look to my blog, I will probably change the photo soon, but I wanted a better font and line spacing, especially with the new way WordPress is making me format post now.

Thought I’d give you all a little health update since I left things kind of up in the air. My infections seem to be all gone, or at least almost all gone, no worries about that anymore! Yay! But my tests showed that I have an obstruction in my kidneys. Yes, I said, “kidneys” plural. I don’t know what is going on. I had an urgent referral to a nephrologist, but they seemed to not think it was urgent since I don’t have an appointment until January 7th. I have been told that if there is a change in my symptoms to get the ER immediately. Okay, I can do that. I’m thinking this was caused by inflammation from the infections and it will clear up, possibly on its own? (one can hope) Maybe that’s why they weren’t worried about getting me in there sooner? I did have a pretty severe pain yesterday, I decided to drink something other than water and very weak decaffeinated tea and my kidneys screamed in response, so did my bladder. Maybe it’s not just inflammation?

We had a very quiet Christmas. We had breakfast with Stuart’s father, and we watched holiday movies all day. I ate entirely too much the past couple of days. It’s obvious there is something going on there. I simply can’t stop eating. Either this new medication is making me crave all kinds of crap, or I’m not dealing with things as well as I think I am. Maybe it’s a little of both? All I know is that if I’m not eating, I’m thinking about the next thing to eat. (if I’m honest, I know I’m not dealing with everything well, I still have this underlying anger that wants to break through often. My husband has the patience of Gandhi. I don’t know if I would put up with me for this long. He says it really hasn’t been that long, it feels like a life time to me.)

We ended up canceling our rescheduled Christmas dinner too. That has been hard on me. Not really that we had to cancel, but that it is going to be very hard to plan it now. and the decorations would have made it very festive, what am I going to do with that empty spot in my corner where the tree was? We moved the furniture and now there is nothing to put there. hmmm. Luckily I like minimalism. We decided we just shouldn’t try to do all of that when we don’t know how I’ll be feeling. So I’m waiting until after I see the kidney doctor before rescheduling. We decided to make this dinner much more laid back though, spaghetti with salad and bread (all gluten free of course). Everyone was all on board with this too, amazing! Most of the time I’m hit with…so and so won’t eat that…it’s hard when you ask and ask what people can and can’t eat and then when you make plans you hear that it’s not right. This might be the last dinner I plan. I now understand why they all go out to eat so much.

There is still so much drama here that it makes my head spin. I’ve just been lying low and keeping to myself. Stuart worries that I need to be more social. Maybe when I feel better, but right now, as long as we get out for a little bit once a week, I’m good, just curled up in my chair with heat on my abdomen and/or back, I’m good to go for now. I’m worried about him, he’s been awfully depressed lately. I think this move took a lot more out of him than he wants to admit too, and he’s worried about me…darnit.

Well, it’s getting late and I find myself rambling so I’ll close for now. I do find myself rambling much more lately, can’t stop talking, a sure sign that I’m still dealing with mania, but I don’t like this new medication. It has too many side effects and too many things that can go wrong. I hope there is another option. I see that doctor late January, she took a lot of time off for the holidays and I had to cancel my last appointment right before she went on vacation because of the kidney stuff. I really need to see her though, we called and I’m on the wait list, hopefully an appointment will come available. We also asked for orders to get my blood drawn, since you are supposed to do that within the first month of being on this medication to make sure your live is okay. Got that yesterday, will be having it drawn tomorrow.

How’s everyone out there? I’m looking forward to having some of these things resolved soon so I can start the new year on a healthier note. I does seem that I either go out of a year feeling like crap or start a new year feeling like crap. Within the first hour of this year I had a cluster headache (and every day since) that’s a sure way to start the year off with a dud. 😉 I’m sure that it will only go up from here.

I will just stop and be thankful for all the support and love I have.

and just breathe.

A Really Long Update

water droplet on sage leaf

I’ve been saying that I’m “working on a post” for a while now, but I haven’t.  I’m not sure why.  I haven’t been too busy.  I think I’ve just been avoiding talking about things.

My bipolar episode has lasted much longer than I ever anticipated.  I’ve been stable for over 20 years and suddenly I had this awful episode that left me feeling like I didn’t deserve the life I’ve built for myself. I knew if things didn’t change soon, I wouldn’t be able to carry on.  After trying to get my medication working and failing, we decided to go back old school, I’m on Lithium again.  This is the first drug I was put on when I was first diagnosed.  It worked for a very long time, but it damaged my thyroid and we decided to try something else.  Fortunately, at the time, I responded well to the alternative medication.  Since the damage to my thyroid as already happened, there is really no reason for me not to take it, and fortunately, it works really fast.  After being on it for about a week I could tell a huge difference.  I’m still having that low hum that makes me feel like I’m going to explode at any moment.  But I don’t explode, I might get angry, but I don’t have the rage I was experiencing. I just increased my dose, so I’m hopeful that anger hum will diminish soon.

That is the good news. I’m leaving out all the rage episodes, the night I was actively seeking for a treatment center to commit myself because I was very afraid I was going to harm myself or someone else, the anger I felt toward my psychiatrist because I can’t hear a word she says and I have to have my husband in there to help me.  At this last appointment I was so distraught by everything I couldn’t really talk at all, he had to tell her everything.  Before we left I asked where I should go if I were in crisis, she asked if I felt suicidal, I told her how I had been feeling, she simply told me which facility I should go to, but I didn’t feel like she took me seriously.  Perhaps I’m being overly sensitive and she understands that hubby will be here to monitor me and see me through this trying time. It’s very hard to get to know a doctor when you are in the throws of a  (disphoric mania) mixed stated bipolar episode.   Yes, I did say, mixed state.  I’ve only talked about the rage here, but I’ve been bouncing around from extreme anger, severe depression, and wanting to jump my husband’s bones….all in the same day. Sound a little crazy?  Yep, I felt that way too.  Thankfully, it’s calming down and I’m feeling more like myself.

Unfortunately, I can’t say the same for my health.  The vertigo, migraines, and hypoglycemia have had me pretty sick, most of the time. Last Saturday we went out to breakfast with my father-in-law, shortly after getting our food the world started to spin.  I lowered my head, took my meds,  and told them to continue.  I was sure it was going to be a quick attack and I’d be okay in just a little bit.  I might not be able to eat, but I could take it with me.  I was wrong. The spinning got worse and I was afraid I was going to vomit right therein the middle of the restaurant.  I got Stuart to get me a throw up bag from my purse and I clutched it tight.  I told him it was BAD, REALLY BAD, and I needed to go home.  I motioned for him to get the food to go.  Hey, I wanted my pancake!  I really didn’t think about how hard it would be for me to walk out.  I couldn’t focus and I felt like my body was moving in ways that my brain really wasn’t telling it to.  The sensation of  being moved from forces that no one else sees is very disturbing. I used to think I had gotten to the point that I was okay with all of this, but I really,really hate it.  I knew my feet weren’t going straight, I kept trying to compensate, that seemed to make it worse.  I clutched on to Stuart for dear life.  It was absolutely mortifying.  The only thing that would have made it worse,is if I had thrown up too.  I will say,my brain seems to deal with the episodes better than it used to, I rarely throw up anymore.  Of course, I did get a Phenergan in me at the very first sign of the attack, and as soon as we got outside Iused my vape pen that’s 4:1 CBD:THC just a little and it calmed my stomach right down.  I also never feel the psychoactive effects with this ratio.  Itis still illegal to use medicinals in public, under normal circumstances I’d never do it, but we were away from other people, and since people use those cigarette vape pens, no one knows what I’m doing. But as I said, normally, I’d never use that in public.  I thought about using an infused candy or tincture, but they simply don’t start working fast enough to help stop vomiting.  But I digress….  This was the first time my father-in-law has seen this, that was hard, but I’m relieved he does understand some of what I go through before he moves in with us.  He also handled it with grace and was very helpful to Stuart.  Not that I really noticed at the time.

I’ve had a lot of challenged with my balance this past month.  Kinda regretting buy a car, but even if I can’t drive it, it’s nice to have a convertible in the family.  I am very disappointed that I can’t drive though, having that feeling of independence was nice.  I was still having vertigo occasionally, but it didn’t last long, it was mild in intensity, and I always had signals that twas about to happen, so I wasn’t afraid to drive.  That all changed.  I accept it, but it makes me sad.

I found a new ENT and I really like his so far.  He admitted that I’ve had all the treatments that he could recommend, yep, I’ve had it all really.  He did say he could give me steroids to try to help with this flare, but since I had Avascular Necrosis that they think was caused by steroid use, I don’t use them if at all possible.  He understood.  He suggested trying Benedryl everyday because it’s a vestibular suppressant.  I never knew that.  I tried it for over a week and didn’t get the results we’d hoped for. So I asked if I could take diazepam for a week or two to try to calm itdown and he said yes.  Also, the Audiologist there called and said she isn’t as experienced working with my brand of cochlear implants so they are having the Advanced Bionics specialist come in to do the adjustment to my CI’s (mapping).  I was so very impressed with that.

I’m also working on getting a new migraine specialist, I really don’t like the guy I’ve been seeing. So cross your fingers I like the new lady.

I’ve done something that I’m afraid I may have a very hard time pulling off.  We had planned to be in our house by now and we planned to host Christmas there.  Well….I decided we still needed to do it, but man is it going to be a lot of work.  I’ve invited the whole family, and one friend. That’s 6 adults and 2 children.. 

But this is the first Christmas that Stuart’s step-mother will not be home.  I feel it’s important for his father to be surrounded by all of his family for a Christmas celebration.  We are having it on the 22nd so Dad can spend Christmas day with his wife. We have been thinking about joining them, but it’s a busy time at the home, and her daughter and her significant other will be there.  So, I think it will be good to go have dinner with her between Christmas and Thanksgiving.

I’ve been trying to make cookies, the kind you decorate all pretty with royal icing.  I decided they were WAY too sweet with the icing, since it is just a sugar cookie, so I’ve been trying to make the icing less sweet.  Problem is, as I have been working on a new recipe I have to keep tasting it.  This stuff is super sweet…cloyingly sweet.  So twice now, I’ve had a hypoglycemic crash.  Feeling dizzy, light headed, sick to my stomach….ok so none of that is new….cold sweats, shakes, stomach cramps….I even threw up.   Yep, blood sugar drop.  Now I’m not even sure I ever want to decorate cookies.  My back always hurts when I do it anyway.

Oh…other challenges this week.  I had my physical on Monday.  All my numbers were good!  Even my triglycerides, they have only been normal one other time in my life. Shockers!   However, I was having a slight pain in my kidney area and asked if she’d check my urine.  I’m so glad I did!  By the next day I was in severe pain, still am if I’m honest, and the nurse called and said that I have a UTI.  HAHAHA I found that amusing because I really had no idea when I asked for the test.  My back has been hurting so I thought it was just that, it was obvious the next day that is wasn’t.  So now I’m taking antibiotics…eww.  Can you imagine how much worse it would have gotten if I had needed to go back to the doctor for a test?  Phew!  that was lucky.

I also got a pneumonia vaccine, I had to have one when I got my cochlear implants, and I was supposed to get a booster in a few years, I’m about a year late, but I got it done. (it is supposed to reduce the chance of meningitis)   1% of the people who get this vaccine have a reaction to it.  Yes, I am that special!  The injection site swelled up and turned read.  It measured about 3” in diameter, and it was so painful.  If I moved my arm a very sharp pain would shoot through, not as if the muscle was sore, a very sharp pain.  I couldn’t lie on that side for over 3 days.  Finally it is feeling almost back to normal.   Golly, that was an experience.

There I think I’ve caught you up on all things Wendy for now.

I hope you are having a joyful holiday season.  Try not to overdo, as you can see I probably am…..big dummy.  😊

*photo, “Water Droplet on Sage Leaf” taken by W. Holcombe.  Please do not use without permission.  All rights reserved