Dumbass Psychiatrist

I decided to call my psychiatrist's office yesterday to see if he could see me earlier in the day next week.  I run out of Wellbutrin the day before and I usually take it in the morning.  I thought he might be changing the dose so I didn't want to get a refill on my meds until I talked to him, hence, an earlier appointment would be good.  They didn't have any appointments available but his nurse said that the Latuda was causing the pain and to stop taking it.  I said that was fine but I needed something to replace it.  He said to just stop taking it and we'll talk about a replacement next week.  I told the nurse I simply could not do that.

I made a bunch of phone calls trying to find out what could happen if I didn't stop taking it until next week.  The pharmacist agreed with me not to stop taking it without a replacement.  No one else would give me an answer.  I went to my regular doctor and asked him to either give me a script for an antipsychotic I can take, put me in the hospital, or I'm going to keep taking it until I see the psychiatrist.  He said to keep taking it.  So, therefore, even though it is causing my widespread, neuropathic pain, I am going to keep taking it.  I'm also going to find a new psychiatrist.

The last time I saw the psychiatrist I told him I was having psychotic symptoms and he increased my Latuda.  I also told him about the problems with my back and legs and that they were doing tests.  Who in their right mind tells a person who's having auditory hallucinations and paranoid delusions to just stop taking their antipsychotic for a week?  When I've been without an antipsychotic or been between therapeutic levels before my hallucinations and delusions have gotten really bad, not to mention my brain just didn't function.  I would say a sentence and in the middle of it the words stopped having meaning.  I played a game and suddenly I forgot what I was doing and it didn't come back to me.  I'm just supposed to willingly let this happen?  I can't do that.

The fact that he wouldn't spend the 15 minutes to look at my chart so he could give me something else pisses me off almost as much as the fact that he wants me to just give up logical brain function.  I understand that the neuropathy could become permanent but no one understands what kind of hell it is to lose your mind.

I'm going out of town for a few days with my dad for his mother's funeral.  I'm not looking forward to how much pain I'm going to be in with the long car rides but I wouldn't miss Alice's funeral, even if I have to be in pain.  I'm also not looking forward to all of the emotions flying around.  I've never been very good dealing with other people's sadness, especially when they cry.  I just don't know how to act, I guess.

I had to go shopping for a swim suit yesterday.  It's not something I enjoy, that's for sure.  It doesn't help that summer's practically over and there isn't much selection.  Monty wants me to try getting in the hot tub at the hotel to help with the pain from the car ride there.  I don't really know how much it's going to help, but he insisted I get something to wear.  At this point I'm willing to try just about anything for the pain.  I know it seems like a contradiction, that I don't want to stop taking the medication that is likely causing the pain, but anyone who has had a psychotic episode has got to understand.

An Update

Here I am, at 5:00 AM, typing away at my blog.  When I woke up around 4:00 AM I had been having a bad dream and didn't want to go back to sleep.  I got up and thought to myself, "What in the world are you going to do at 4:00 AM?"  And here I am, writing my blog.  It's a good coping skill helps me organize my thoughts and makes me more aware of them.  It shows me blatantly where I'm being irrational.  Sleep is overrated.

Things haven't been going badly, if you leave out the pain and the hyper-anxiety.  On Monday I had more than one anxiety attack as a result of ruminating about my health problems.  I need to think positively and use positive self talk before I worry myself back into the hospital.  I may have to go back sooner rather than later anyway, so I can be safe if they have to take me off my medications.

As for other psychiatric symptoms, depression is still nipping at my heels.  The auditory hallucinations (noises in other noises) are there occasionally, and more so when I am really anxious.  I would say the medication change has been a moderate success, with room for improvement.  It's hard for me to know what way I want to go with my medications with all these other problems.  I dunno if I would rather switch anti-depressants completely or try upping the the dose.  I really just don't know.

I feel like it's just not time yet.  It's not time for me to go into the hospital yet.  I want to wait as long as I can, especially because I told the staff that I wouldn't be back for a year (trying to be realistic but positive).  If I have to go back for the problems I'm having now I'm not sure I want to go to St. Luke's, because of Dr. Larsen's heavy belief against medical doctors on the psych floor.  I trust him more than anyone with my psych meds but I don't want my physical problems overlooked, especially if that's why I'm there.

I saw the pain specialist yesterday.  I woke up at 3:00 AM and couldn't sleep because of pain so when my appointment came at 2:00 PM you would think I would have been tired.  Instead I was wired and my cuticles picked to the point of bleeding.  I forgot to tell her some important details but managed to remember everything before I left.

She was very nice and assured me that there could be many things that could be causing my pain and many of them are not serious.  She said that it is possible (if there is neuropathy) that it could be reversible.  I told her how scared I was and she reassured me and encouraged me to think of the best possible scenario.  The EMG, she said, is done by a doctor that only comes once a month for these tests.  She said the test would definitely tell us if there is neuropathy and they will do tests to see if something other than my medication is causing it.

She ran more blood tests and named off some medications that could help, depending on what we find.  She said that some types of arthritis and some viruses can cause the symptoms I'm having.  She gave me a different muscle relaxant that she said helps more with pain than the one I was taking.  She also said that the blood work my family doctor did shows my B12 is a little low and suggested I take a supplement.  I'm going back to see her in two weeks.  I had to reschedule my therapy appointment to go to this week's appointment, but I will see my therapist next week as well as my psychiatrist.  Maybe my psychiatrist will have some answers, and hopefully the doctors can all work together to figure this out.

I have been leaving out something important from my blog entries because I was worried about, well, I'm not sure.  My step-dad-like person that I live with has been going through hell as his mother died.  It seemed to me to come on rather suddenly and as soon as she went to the doctor she went into the hospital.  She had pneumonia and had a horrible time breathing and after they moved her to hospice it wasn't long before she was gone.  Alice was a great person.  She always treated me like family, no matter what.  She loved to talk and I wish I could have seen her one more time before she passed away so I could tell her how well she raised her son and how honored I felt that they allowed me to be part of their family.  Unfortunately she was a few hours away and with the pain I've been having I knew I would be very unpleasant after that long in the car, let alone sitting and standing after we got there.  Plus I didn't know when my tests would be.  She passed away peacefully and I will be making the trip for her graveside service on Friday.  I think the new medication will make it easier to make the trip.

Possibilities and Fear

I want to start out by thanking those of you who have "Liked" the blog's Facebook page as well as those of you who read this blog.  I know that some of you choose not to "Like" my Facebook page because it can make you feel vulnerable if you have a mental illness and it's not something you'd like to share.  I don't blame you because I felt the same way before I decided to go public with my illness.  For a long time my blog was written under a pen name because I was worried what people I knew would think if they read it.  No one should feel they have to share anything about their mental illness because it's nobody's business.  Anyway, on the Facebook page for this blog I put up inspiring quotes and links to sites that I think are good resources. Feel free to check it out:

https://www.facebook.com/MemoirsOfASchizoAffective

So I ended up calling my doctor to talk to him about his thoughts about what is going on.  His nurse suggested I just come in so I made an appointment.  When I saw him I felt guilty for taking up his time, but I also needed to ask him a lot of questions.  When I saw him last I was in so much pain I couldn't think about anything else.

He said that the blood tests all looked good except my CBC which he said was just a little messed up.  He said that I could stop going to physical therapy because I felt it was making things worse.  I explained to him my worries about MS and he said it is on the list of possibilities but it is rare so it is less likely.  He feels the most likely cause is one of my medications.  He said I may have to go into the hospital for a med wash depending on the results of the EMG.

I read up on the EMG test (which they have yet to call and schedule with me yet) and by some testimonials it is very painful.  They put a needle in each of your muscles and test the speed at which a shock goes through your nerves.  Some people that have had it said it's the worst pain they have ever been through, some said that it didn't hurt very bad at all.  As you can probably guess most of the people with a lot of pain during the test had more healthy nerves.

The prednisone is helping unbelievably with my pain.  My doctor said that it is a scary sign.  It's also making me sweat like crazy.  My hands and feet are on fire.  But with the way my back, legs, and my arm feel, I'd be willing to be sweaty for the rest of my life.  Of course I'm still having pain but I am managing it.  Unfortunately I think a migraine is coming on, and I can only take the prednisone for five days.  My doctor hopes it will have a lasting effect, but I am skeptical.

I did some research on all of my medications and it turns out that neuropathy is a very rare side effect of Wellbutrin XL, which I take every morning.  None of my other meds even hint at anyone having it as a side effect.  Maybe this is the answer.  I've only been taking it about six months.  I'm glad we might have the cause but I've tried so many antidepressants and this one seems to be working.  I don't know if I'll have to go in the hospital to change just this medication or not.

I've been looking into treatments for neuropathy and most of the information I've read says that it is rarely reversible. Acupuncture is one of the treatments people have found to work, but it is sooo expensive and most people said they needed several treatments for results.  There seems to be several options but none very effective across the board.

I can definitely say that I'm scared.  I'm scared there won't be anything they can do and that they won't even be able to figure out what's wrong.  I'm scared someone will have to take care of me sooner than I was expecting.  I'm scared because there's no one who can take care of me full time and that I might end up in a nursing home.

I guess I just have to wait and see what the future brings.

My (Physical) Health

My back pain has been pretty unbearable and I had no choice but to go to the hospital on Friday (the 10th).  They gave me a strong anti-inflammatory and it helped some.  They changed my daily NSAID to something stronger and gave me a muscle relaxer to take up to three times a day.  I've been taking them as prescribed with no improvement.

I went back to the doctor on Monday where my doctor said he believes it's neuropathic pain, which is pain caused by dysfunction or damage to the nerves.  My doctor is worried that my medications are causing the nerve problems because some psychiatric cause diabetes type symptoms.  He did blood tests and referred me to a pain specialist that I will see next week.   They are also going to do EMG tests which test the function of your nerves.  The blood tests came out normal and I have started taking prednisone (just this morning) in a very desperate attempt for some relief.

I have also had some problems swallowing for the last few months.  I have to take a drink after every couple of bites or whatever I'm eating gets stuck in my throat.  I just attributed it to the antipsychotic I'm taking and it hasn't caused me enough trouble to worry me.

When I go to physical therapy they say they don't find any muscle tension and the STEM treatment they've been doing is not helping.  When I was there last time my leg began to jerk for several minutes and then stopped.  This worried me some, but they didn't think it was anything important.  I told my doctor about it anyway.

After doing a lot of research on neuropathic pain I have found a lot of things that scare me.  Most of the information I've read says that this kind of pain is so hard to treat that many patients don't even get partial relief.  Another thing I found is that neuropathic pain is very frequently found in MS (multiple sclerosis).  My grandmother has MS and I have read that it can having a family member with it can give you a predisposition to having it as well.  Trouble swallowing and muscle spasms are also classic symptoms. They can diagnose it by your symptoms or by an MRI of your brain.

My grandmother has been in and out of a wheelchair for as long as I can remember, even when I was a little kid.  I am 25 and she is only in her late 60s now.  She has had so much pain and it seems unbelievable how she goes from so bad to so much better so quickly.  We always gets so worried about her.  It really scares me to think that that could be my future.

I'm very impatient about waiting for my pain appointment next week.  It has crossed my mind to call my doctor and ask him for the MRI to rule out MS.  He said we still had some options so I think I should wait until after the appointment and the EMG tests to talk to him.  I don't know if that is going to happen though, I'm just so anxious about it.

Depression is Affected by Pain

With the adjustment in my antipsychotic, I've had fewer and fewer psychotic symptoms.  My depression is slightly better than before.  My focus and motivation are still lacking and the hopelessness is really the only thing that has improved a little.

It's had to get past the hopelessness and I think a big part of it is that I don't have any plans for the future.  It's not that I don't want to make plans but even when I start to I usually stop myself.  Every time I make plans the end result is usually me in the hospital.  I get very depressed when  think I can do things and I can't.  The disappointment and guilt that comes with my failures usually spins me to a depression that I can't pull myself out of.  There's really so many things that I wish I could do, and I hope someday I will be able to do them.  I guess I am just so scared of the let down that it keeps me from trying to do all those things.

I've been having problems with my back and legs being in pain all day, getting worse at night.  I got the MRI of my lower back and it didn't show anything so I was told to just take my pain medication and it will resolve itself.  I got a massage, have been seeing the chiropractor weekly, have been using ice and heat, and the pain is just getting worse.  I went back to the doctor and he said that I couldn't take any heavier medication with the psych meds I'm on unless I am in a hospital.  The only thing he said he could do was send me to physical therapy.

The pain is really not helping the depression.  It's hard to have a good outlook if you are always in pain, especially when there doesn't seem to be a solution.  The physical therapist said there could be several problems but seemed surprised when the I told him the doctor had no diagnosis.  The physical therapist said there are some things we can do and I will be going there three times a week for six weeks.  That still doesn't give me a lot of hope with the pain still being there constantly.  I feel like there's nothing that's going to help.

The good thing about physical therapy three times a week is that I will not have a choice of isolating.  I tend to isolate as much as I can when I am depressed.  I don't have the motivation for showering and washing laundry so it's easier not to see anyone.  Not to mention it's just easier if I don't have to socialize, that way no one will know I am depressed.

I'm worried about having migraines though because I have to take extra medicine basically every day and I'm only supposed to take them twice a week.  I hate the injections I have to get when I get a migraine.  They make me feel exhausted for days and sometimes the first one doesn't work.

The Psychiatrist and an MRI

So on Wednesday I saw my new psychiatrist for the first time.  He seems to be pleasant and agrees with my policy to change things one at a time.  He asked me all the things I think a psychiatrist should on a first appointment, including how I felt about how my medications are working for me.  With the depression increasing and the psychosis just hanging around I suggested an increase of either my antipsychotic (Latuda) or my antidepressant (Wellbutrin XL).  I was leaning more towards the antipsychotic, but I wanted to see what he thought so I kept that to myself.  And, it turns out he was thinking the same as I was.  So far no noticeable side effects from the increase, but time will tell.

For the past few weeks or so I've been having pain in my legs and back.  It started out with my not being able to complete my exercise routine and ended in me not being able to do it at all, with constant pain which peaked at night.  I'm not supposed to take pain medication more than twice a week because I'm prone to migraines.  That includes NSAIDs like ibuprofen and acetaminophen.  Frequent use of pain medication, whether warranted or not, can lead to rebound headaches which can lead to migraines.  I had a migraine last week.  It was the worst I'd had in a long, long time.  They had to give me two shots because the first one didn't work.  This was a wake up call for me because I realized that my having to take pain medication for my legs and back had lead to my migraine.

I saw my doctor about the issue on Wednesday morning and he suggested it was a back problem, probably a pinched nerve or slipped disc.  He scheduled an MRI for yesterday to find out what the problem was.  I got the results today and they showed no narrowing or anything that they could see.  He had given me a script for an NSAID that releases at a constant level throughout the day, which leaves me less prone to migraines.  It is helping some, but I am still always in pain.  My dad insisted on me getting a massage ASAP and I have one scheduled for Monday morning.  Hopefully it will help.