Mini Me Update

I know my last post was a bit bleak, but things are getting better, I think.

I still have this dang migraine with no relief in sight, but I haven’t given up hope. My useless stay in the hospital and the indifference my migraine doctor showed about the akathisia has lit a fire under me to find a new headache specialist, which is much harder than you might think.

Luckily the medication that my PCP sent and the medication that my psychiatrist gave me have mostly taken away the akathisia. I still feel a bit antsy and my anxiety is higher, but I don’t HAVE to move all the time. I’m amazed the akathisia was so bad and has lasted so long from 3 doses of Compazine, I’m so grateful for my PCP and psychiatrist for helping me. My PCP even offered to call my migraine doctor to stress how important this was. My migraine doctor did call, after I sent a message to her about how unacceptable it was that she hadn’t gotten in touch with me. When she called she had to talk to Stuart, of course, and said she was out the office on Monday (in my message I told her that another doctor in her practice should have been covering her for her if she was out of the office. I also told her how my other doctors had helped), and said he had been researching how to help. Really? When Stuart first called her we gave her the name of one of the drugs that help with akathisia, so she already had that information. I got it after a quick Google search. It sure didn’t take me THREE days to get it.

Now I have to not only search for a new headache specialist, but I also have to look for a new PCP because mine is moving next month. Hopefully, this will be an easy process, and I’ll find some great doctors. I know finding a new headache specialist is going to be hard, there are only around 500 in the country. I don’t like the idea of having to travel 100+miles to see a doctor, but I may have no choice.

One thing that came from this, I’m really proud of how I advocated for myself while I was in the hospital and for messaging my doctor about how unacceptable her actions (or inactions) were. Since I lost my hearing it has been very hard for me to do that, but I made sure in the hospital when a nurse and tech ignored the fact that I have hearing loss, that they understood what they were doing wrong. Hopefully they will change their actions in the future.

One of the medications my doctors gave me for the akathisia makes me so stupid. I am forgetting everything! I can’t remember what I was talking about in the middle of talking! Right in the middle of a sentence I’ll look at Stuart and say, “What was I talking about?” It has been very confusing, luckily it will go away once I’m off the medication. I cut it down from 2 pills a day to 1 a day since my symptoms are so much better, and the confusion is much better all ready.

I don’t remember what else I was going to write, so I’ll close for now.

How is everyone holding up? Have you known anyone personally who has been infected with COVID-19? Do you happen to know a good headache specialist in Tucson? hahaha

From Hospital to Akathisia

Another day, another migraine day. It’s the way it’s been for over 6 months now, and it’s been getting worse. How does 6 months of migraine get worse? The severity has been worse….much worse.

The new way to log your migraines now is with the “traffic light” system. With a GREEN migraine, yes you have pain and symptoms but you can still do what you need to do. YELLOW means you have limitations as to what you can do. RED means it stops you. You can’t do anything else buy exist with it.

I saw my migraine doctor virtually on Friday, Yes the same doctor who said she can’t do anything else for me and wants me to go to San Diego for treatment, she didn’t mention this during this last appointment. She saw how many RED days (17 in October) I’ve had this past few months and asked if I thought she should admit me for treatment. I reluctantly agreed. I really wish I hadn’t.

I had my Allay Lamp so I didn’t have to have the bright light from the hospital. It helps relieve migraine pain, and it puts out light that I can stand during a migraine. Unfortunately the nurses didn’t seen to understand about the light. Bright lights are not necessary for everything.

I arrived at the hospital just as shifts were changing. It was confusing and very overwhelming. The pain was high and because of COVID-19 everyone has to wear a mask which means I can’t see their face to read lips, it was horrible I was so glad that Stuart was able to stay longer than they said he would be able to. He answered questions for me, which is really hard on me. I’m the patient. I’m the one who needs to know things, but I couldn’t hear well enough to understand what was going on a lot of the time.

The migraine doctor gave orders for me to get DHE shots, only. She didn’t prescribe anything else. I could do that at home! I expected a

DHE (Dihyrdoergotamine) is given with an antiemetic, so you won’t get nauseous. They gave me compazine instead of promethazine (what I normally take). Compazine isn’t just an antiemetic it’s also an antipsychotic. Antipsychotics can cause akathisia. (a state of agitation, distress, and restlessness, you feel like you have to move ALL THE TIME) You may remember a few years ago when I took Latuda I had a terrible time with akathisia. Now if I take any antipsychotic I get akathisia. I am having a helluva time. I cannot be still. On top of it all, I’m having PTSD because of my past experience with this. I can’t do this much longer. I don’t know what to do.

We called my migraine doctor on Monday morning. Stuart talked to the triage nurse and she said she’d send the message to the doctor “Top Priority”. My doctor didn’t call back until today, it’s Wednesday. So I’ve had akathisia since Saturday!! We called my PCP after hours yesterday and Stuart talked with the doctor on call, he called in something that is supposed to help. I’ve had two doses so far and I’m still moving. I

t’s hard to sit still and write this. I’ve started it over many times over the last few days. I have a horrible migraine right now, I can’t walk around with this pounding in my head. I feel like I’m being tortured. I NEED to MOVE, but I can’t because the pain gets worse and I’m dizzy. Stuart is calling my psychiatrist to see what she suggest since she is more used to this class of drugs. I think the drug the doctor put me on last night might be working a little, but with this SEVERE migraine pain I can’t move as much I as NEED to because it makes the pain so much worse. It really is torture.

Cross fingers for me that this medication works. I can’t write any more. I’ll be back after I feel better. xoxo w

Sitting is a Luxury

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.

 

I can’t be still…….

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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.