This will just be a short update on what’s going on with me and Akathisia. (literally meaning “inability to sit”). I found a great article explaining this complex side effect to various psychotropic drugs including antidepressants and antipsycotics. If you’re interested: Akathisia by the RxISK Medical Team.
The turmoil I have experienced with akathisia has been unbelievable. The need to move has been overwhelming. I can’t express how intense this sensation has been, it was consuming every part of my life. You can read more about my experience with this side effect in my post “I can’t be still”.
I saw my psychiatrist last week and she took away one of the new medications, but kept me on an antidepressant that often helps with akathisia. I’m happy to say that I’m much, much better. I feel that sitting still is such a luxury.
Finally after a more than a month the restlessness is easing. I still feel figetty and just want to shift and move a bit, but I no longer feel the need to pace until I drop, with still the need to move. My back is still very tense. The muscles have been tense for over a month, they simply do not want to settle. I’m in a quite a bit of pain because of it. I think I may need physical therapy to help calm it down. I’ll be seeing my primary care doctor next Friday for my 6 month visit, I’ll see what she has to say then.
How about side effects with the new medication? After all, can an drug actually cause no side effects? I’m not sure it’s the medication that’s causing it but I’m having a hard time with my cognitive function. That, sounds like I’m brain dead, I promise I’m not, I’m just having a hard time thinking. I have brain fog and I’m very easily distracted, or my short term memory is shot….I’m not sure which, after all my brain is not thinking clearly. Hopefully this is a side effect that gets better. If not, we may be on the search for a new antidepressant. sigh.
I promised this would be short, I’m keeping my promise.
I’m leaving you with a few articles about Akathisia that I found useful during all of this. I learned so much. I’m surprised I haven’t heard of this before.
“Do not resist your pain.
Surrender to the grief, despair, fear, loneliness,
or whatever form the suffering takes.
Witness it without labelling it mentally.
Allow it to be there.
Embrace it.
Then see how the miracle of surrender transmutes
deep suffering into deep peace.”
~ Eckhart Tolle
“With mindfulness we have the choice of
responding with compassion to the pain
of craving, anger, fear and confusion.
Without mindfulness we are stuck in the
reactive pattern and identification that
will inevitably create more suffering and confusion.”
~ Noah Levine
*image taken by S. Holcombe, permission is required for use.
Today is the first day I’ve had any relief from the restlessness caused by my medications. In my post about my side effects I mentioned that my antidepressant caused me to have restlessness and my doctor put me on something else to counteract the side effects. I thought it was going to work at first, but it didn’t. She changed the medication to a new one that should have helped with the side effects, instead it made it worse. And my hair started falling out! (not in clumps but my brush has to be cleaned at least twice a day)
The restlessness has been severe. On Thursday I was at my therapist office pacing, and sobbing as I couldn’t be still and my muscles have been so fatigued they just can’t keep going. I’m amazed I haven’t lost a ton of weight. (I have lost some, just not a lot compared to how much I’ve been moving) I’ve been moving constantly. and I do mean c-o-n-s-t-a-n-t-l-y! I don’t feel like I can portray just how horrible this is. I feel like my muscles in my back are tightening up all by themselves. My back HURTS. I just need to move. It is very hard for me to sit here and type this post because I really NEED to be up and moving. And yes, this is a better day.
My therapist talked with my psychiatrist while I was in the office. She was concerned I might be going manic. I’m not. I do feel a little like it, the motion, the antsy feeling….but it’s different than this. This is different. It is in no way good. When mania first starts with me, it feels good. (unfortunately, that’s why people shy away from treatment so often, it can feel good, but things change) I think my psychiatrist finally understood just how bad it was. I don’t think the messages she was receiving portrayed the situation correctly. Poor Stuart was calling her office a LOT.
After she talked with my therapist she changed up my medications. Possibly because I said I wanted to be off anything that MAY cause restlessness. Just start over. Yes, I’m risking my sanity by switching antidepressants, but I’m doing well and I’m very aware of what I’m doing so if I start getting depressed I’ll know what is causing it. That is the first step in dealing with it for me. I know it will stop.
I wrote the previous part of this post yesterday (Saturday), today I’m not doing well at all. I don’t know why I felt somewhat better yesterday, today is hard. I wish I knew exactly what I have. The name it is called. She mentioned kinesia, but that encompasses so much. From what I’ve read it sounds like I have Akathisia (A feeling of muscle quivering, restlessness and inability to sit still, sometimes a side effect of antipsychotic or antidepressant medication – Mayo Clinic) I’ve been reading that some of this can become permanent. “Please do not let this last forever. Please don’t let it last much longer.” I really feel like I just can’t deal with it much longer. This is the stuff a nervous breakdown is made of. My mental health drugs have caused extreme physical changes, this hasn’t been helping my mental state of mind, but I’m not manic or majorly depressed at this moment. yes, I’m a little depressed, but who wouldn’t be under these circumstances?
Unfortunately, today is a bad motion day. I do have moments where I feel somewhat normal, but that is normally when I’m really concentrating on something else. I just want to get up and move. But moving really doesn’t help the feeling get better. I just NEED to do it. I’ve never had a feeling like this and it is very hard to explain, I hope I’ve made it understandable.
I’m confident that things will get better, but I must admit I have the fear in the back of my mind that it won’t get better. Then I try to bring myself back to the present and deal with it one moment at a time. I CAN DO THIS!
*all artwork on Picnic with Ants created by Wendy Holcombe unless otherwise noted. Please do not use this image without permission.
I’m happy to say, for the most part, I’m doing well; but I’m having a heck of a time with side effects from one of my medications.
Normally I don’t mention the names of medications I’m having troubles with, but feel this would get confusing if I don’t use their names this time. Please remember that medication side effects hit different people differently. Some will have no side effects, others will be allergic. Be smart about your medications. Keep up with your side effects and discuss them with your doctor.
I’ll start from the beginning of this tale.
Last year my psychiatrist put me on Latuda for Bipolar Depression and it worked very well. I was very impressed. However, in January when I had to pay over $1000 every month for Latuda until my deductible with my insurance was met. I decided to try a new medication.
Enter Geodon. My psychiatrist had seen similar results from Geodon as with Latuda, so we decided to give it a try. It didn’t help my moods as much, but I wasn’t on a high dose. Then the muscle spasms started. My back started hurting so much. I could not get comfortable. This can be a side effect of Geodon. At this point I had met my deductible so I went back on Latuda. I was sure all would be fine then, but it wasn’t.
It took me a while to understand what was happening to me. I simply could not sit still. It got worse, not only could I not sit still, I felt the need to pace. I would pace the house. I would exercise throughout the day. I just had to keep moving. It was driving me crazy. I had a lot going on this past month so it was difficult for me to figure out it was Latuda causing my problems. I just never suspected it, I didn’t have side effects when I was on it before, but evidently when you go back on a medication it can produce new side effects. Finally I decided to look up the side effects for every medication I am on. I wasn’t even going to check Latuda because I had no side effects before, but I decided to look them up. One of the first side effects listed that you need to discuss with your doctor is restlessness. I hate it was my beloved Latuda, but glad we figured it out. I really have been going crazy. Having to move all the time is overwhelming.
I told my psychiatrist how I was so restless and how it gets worse within 30 minutes of taking Latuda. She said, “shit”. She’s a really cool doctor, she was just saying what I was feeling. Aw Shit! Now what? We decided to add a drug (Cogentin) that will help with the side effects instead of taking away the Latuda at this point. Latuda has helped my depression so much, I hate risking my mental health by changing antidepressants, but I also hate taking a medication to stop the side effects of another drug. Not a good place to be in right now. I’ve decided to try the Cogentin for a while. I may decide to change antidepressants in the future. If the Cogentin doesn’t work, I’ll be going off of the Latuda if I want to or not.
I started the Cogentin yesterday and I have to say, I feel much more calm. I’m a little antsy, but I’m not pacing. I can sit still for a bit at least. I hope it keeps on working and works even better.
photo by w. holcombe
I had to drastically cut down on my knitting because my back was hurting pretty bad. Today I’m able to knit more. That’s a huge improvement.
I’ll close today with a short list of things I’m grateful for right now…..
I’m so grateful that most everything with my health is doing well. I haven’t had a flare in quite some time, even though I pushed myself too hard recently. I’m grateful that I have such a great psychiatrist, who listens and is willing to help me find the best solution. I’m grateful that is seems the Cogentin is working. I’m grateful I have friends I can reach out to when I’m not feeling my best and they “get it”. I’m grateful for my blogging family. I’m grateful I can knit again!
“The way is not the sky.
The way is in the heart.”
~Buddha
“Watch your thoughts, for they become words.
Watch your words, for they become actions.
Watch your actions, for they become habits.
Watch your habits, for they become character.
Watch your character, for it becomes your destiny.”
~Buddha
“Do not dwell in the past,
do not dream of the future,
concentrate the mind on the present moment.”
~Buddha
*all artwork on Picnic with Ants created by Wendy Holcombe, unless otherwise noted. Please do not use without permission.
**This post may be a trigger for those who suffered physical abuse or molestation.
On January 4th I got a text telling me he was dead. My first thought was “good”. Then I got hit with a wave of guilt. How could I feel good that a person died? I felt like a bad person. We aren’t supposed to talk ill of the dead, but when the dead did some horrible things I think it’s time to talk about it.
It’s not like I didn’t tell before now. The first person I told said I was lying and stopped speaking to me. To this day she will barely acknowledge me. We were very close, it still hurts. I told my mother years later, she believed me, but I asked her not to do anything about it because it would have ruined her relationship with her sister. You see, my abuser wasn’t alone, his wife was with him. His wife is my cousin. My sister listened when I told her, said she was sorry, but she is still very close to my cousin. It hurts me terribly.
I felt very guilty about this the abuse. I was a teenager, I felt like I should have been able to stop it. To not feel like I just wanted them to love me. I was a very confused teen. I was undiagnosed with bipolar disorder. It was easy to confuse me. I was a teenager. These people were grown-ups, they broke the law when they molested me, even if it seemed to be consensual. There is a reason we have those laws.
After the initial abuse he would grab and fondle me when people weren’t around. I tried to stop this. It was very hard. I was so confused. This was someone who was supposed to protect me, yet this is how I was seen; as a sexual object. I lived with my cousin and her husband. It was not a good thing. I was never comfortable. They threw me out of the house because I cut school. I was a straight A student, I cut school, it didn’t affect my grades, but that wasn’t enough for them. I was told to get out. I don’t feel the punishment fit the crime. I had less than 2 months until I graduated from High School, and I had no where to go. (It’s a long story as to why I was living with them.) I turned to a friend and lived with her family until I graduated. This house was so much different. I felt safe.
It is hard to tell this story without going into too much detail. I don’t think that is necessary. I want to tell you all that if you were abused it is not your fault. It doesn’t matter how old you are. If you have been grabbed or fondled, you have been abused. If you have had sex without your consent, you have been abused. If you were too young to consent, you have been abused. They call it harassment or rape when you get older. It’s all wrong. No matter what you do, what you wear, how you act…it’s wrong to treat you as a sexual object. It’s wrong. You should never feel like you did anything wrong. I carried that guilt and shame for a long time.
Now, I feel a tiny bit of release. He’s dead. And I feel good about it. Does that make me a bad person? No, it makes me human.
Does the pain and confusion go away when an abuser dies. No. Maybe that’s because nothing is really settled. For me, I still have people who don’t believe me. I don’t feel like either of them paid for what they did to me. They kept the same people close to them. He continued to have sexual relations with many women. (I don’t know that he abused anyone else who was under age.) She is still part of a close knit family. I’m the odd man out. Everyone ignores the girl who told.
Remember that nothing you feel is wrong. Emotions are never right or wrong. Nor does feeling them make you good or bad.
Don’t try to suppress or fight any emotions that may arise. Resisting our feelings often forces them to return even stronger and more demanding of our attention.
Don’t be surprised by any emotion that comes up, even if it surprises you that you feel that way. Sometimes our emotions are letting us know we have unacknowledged issues to process. Keep in mind that emotions we experience following our abuser’s death can often be conflicting.
Don’t focus on sorting out which one is right or wrong. Just acknowledge them, feel them and use them to process whatever information you need to.
Attend your abuser’s funeral only if you feel it would be beneficial to you. Family members may try to pressure you to attend the funeral, if only to keep up appearances that “everything is fine”. If you do choose to attend any services it might help to take a safe, supportive person with you.
Be prepared to grieve the loss of things you always wanted from your abuser. Perhaps you wanted an apology. Or you wanted to confront them and have them accept responsibility for what they did. Maybe you wanted them to finally become the parent/ sibling/etc. that you needed. Giving up those hopes is a loss that you may need to grieve.
Seek help if the emotions brought up by your abuser’s death feel overwhelming or insurmountable on your own. A support group, therapist, grief counselor or Trauma Recovery Coach. Even if you felt that you had already “finished your work” the death of your abuser is such a significant event that it might necessitate some additional help. It doesn’t mean you’ve lost ground in your recovery. It just means that some new ground has been uncovered.
To read other stories about how people deal with the death of an abuser see the links below:
“Sometimes people hunger for more than bread.
It is possible that
our children, or husband, our wife,
do not hunger for bread,
do not need clothes,
do not lack a house.
But are we equally sure that
none of them feels alone,
abandoned,
neglected,
needing some affection?
That too is poverty.”
~ Mother Teresa
“Even if others abandon you
You must never abandon yourself.”
I’ve been trying to write for a long time, but the words just haven’t come. There are a couple of topics I want to write about, but they are sensitive, and they may offend some people who read my blog. It’s a true dilemma. I want to be true to myself and my readers, but I don’t want to hurt anyone. So I feel stuck.
My brain is also just not working like it used to, I’m thinking that having a moderate to severe headache for almost 2 years has something to do with that. They’ve just been getting worse. I had another visit to the migraine doctor and she changed up the Diamox; she had to, it was driving me crazy with all the side effects and I wasn’t going to take it anymore. She put me on Methazolamide. It’s in the same family as Diamox but it is supposed to be more easily tolerated. So far I am tolerating it, but it is doing nothing for my headaches. I feel like she doesn’t take me seriously since most of my migraines are moderate in intensity. A moderate headache (between a 4 and 6 on the 0 – 10 scale) every day can be pretty debilitating. At least I do have a few hours here and there where my headache is mild, but it’s still there, all the time. My brain is mush.
I started to order supplements that are supposed to help with migraines, but I’m seeing the functional medicine doctor next week, I’m sure they will suggest supplements. So, it will wait until the 18th. I’m excited about going to the Functional Medicine doctor. I’ll write all about it after my visit. I was supposed to go a while back but we thought we might be moving and didn’t want to get started with another doctor. But it looks like we’ll be here for a while, so let’s get started.
I was reading on the American Migraine Foundation site and the University of Maryland site about supplements that help with migraines. (be sure to check out those sites for information on supplements for migraines) I’ve already tried looking for triggers in foods and everything else I can think of. The only things that really trigger a headache for me is the weather, and strong smells. Sometimes bright lights can do it. So I’m searching for alternative treatments. I’ve tried acupuncture and chiropractic, they didn’t work for me. I know that magnesium can help with migraines but I found it caused diarrhea. My migraine doctor suggested a different type of magnesium that is easier to absorb, (magnesium glycinate or gluconate). Who knew there were so many different types of magnesium, I counted 7 yesterday when I was researching it. How is one supposed to know what you need?
I decided to wait on starting the new magnesium until I found out if this medicine she gave me worked. (I already take magnesium, but it’s the kind that upsets your tummy so I don’t think I’m taking a therapeutic dose.) She still says to give this new medication a month at the highest dose. I hate to say it, but I’m ready to look for something else. I just don’t think the medications is going to help, so far my headaches have been more severe. I’ve been on the medication for about a month now, I’ve been on the highest dose for a week now. It’s a very hard medicine for me to keep up with . I have to take it 3 times a day. It’s the only med that I need to take in the middle of the day and I can’t remember it. (I haven’t missed a dose, I just don’t feel that I’ve timed it out well) I installed a timer on my phone, hopefully that will help, as long as my phone is close enough to hear. Great thing about this medication, it has greatly reduced my appetite. I’m losing weight again, finally, after so much trying. I’m very excited about this. Now if I can keep it off when I go off the medication.
The thought of adding more supplements or medications to my regime is overwhelming. I take so many pills, surely I don’t need all of them. But I’m not one to just go off of medications. I will go over all of them with the Functional Medicine doctor and we will see what he has to say.
“Functional Medicine is the deepest and most powerful approach to prevention and reversal of disease that I have encountered. It systematically discovers and addresses the root causes of disease and uses sophisticated treatments that lead to dramatically improved outcomes” ~ Robert Sheeler MD, Editor Emeritus, Mayo Clinic Heath Letter
Since I’m giving an update on me I may as well tell you about my vertigo. I’ve been having a lot of short spurts of vertigo. It may be migraine related instead of Meniere’s, but it is really hard to tell at this stage. I’ve fallen twice in the past 2 weeks. Luckily I remember to just crumple myself on the floor instead of falling hard. Both times I went down on my artificial hip. Luckily, I didn’t hurt myself at all. Think I need to use my walker at home more often.
So, I’ve been rambling. At least I’m writing, right? Today I just had to get out what has been going on recently. Perhaps soon I’ll write about the other things on my mind. I really want to keep my blog open and honest and not writing about these things that are going on in my life, feels dishonest. Perhaps I’ll write about easier things first. maybe.
Thank you all for following me. I’m glad you like Mindfulness Monday. I’m going to try to get out more posts, I promise.
What would you do? If you thought a topic might cause some upheaval, would you still write about it? It isn’t anything that everyone in my family doesn’t know about, they just don’t believe it all. Then the other topic is about medical marijuana….since it isn’t legal in my state, I’m not sure I should write about it.
Picnic with Ants 