What does it sound like is happening??

[[Re...]]

I am putting some pieces together of what to do next and what this could mean. I want feedback from fellow akathisia sufferers or those in the know about what this process looks like when dealing with this lurking beast of a symptom. I will be super detailed because I am trying to figure out what could be happening with my nervous system.

 

Some background...The akathisia has shape-shifted since I was rapidly tapered off 1.5mg of Ativan last Sept after two years of use and chaotic polypharmacy before that. I was put on Seroquel (which can cause or exacerbate akathisia) for sleep, and tapering it has been a nightmare. I have been holding at 28 mg for about six weeks now.

 

I am almost 9 months off the Ativan.

 

Akathisia started as insomnia and not sleeping for 14 days during benzo withdrawal. This was when I was given the Seroquel. Then it became middle of the night exercise with a complete inability to relax or be alone. I would need to do push-ups, run around, jumping jacks, and burpees, and get this energy out that I thought was panic because I did not know better. I did not understand what akathisia even was at the time. It took me months to figure out what was happening to me.

 

Then the akathisia became not sleeping more than an hour and having to take cold showers so much that I got burns on my skin. That phase shifted and became electric skin sensations and muscle contractions, and I even had an acute dystonic episode. Medical professionals missed all of this, and I recently got a proper diagnosis of akathisia FINALLY after ER visits for months and a week-long stay in a medical hospital. All the while, I was responsibly tapering Seroquel.

 

The akathisia became so unbearable last month that I was willing to try low-dose morphine to treat it. There is scant medical evidence of the effectiveness of this treatment, and it worked for Jordan Peterson, whose daughter publicly wrote and spoke about it. I had tried Propranolol, Benadryl, Vitamin B6, and Mirtazepine and had adverse reactions.

 

Three days after trying the morphine, I had three weeks of increased pacing, inability to sit still, and agitation. Would it take this long for morphine to affect akathisia, or would that happen immediately, or is that something one cannot say? I took one 4 mg shot of preservative-free morphine because sodium metabisulfite, an additive in pills, can exacerbate akathisia. In the last three weeks, there were about five days where I did not sleep more than 2-3 hours, then I crashed last Friday and slept for 14 hours broken, then 10 hours Saturday, 9 Sunday, and now I am sleeping 6ish broken hours with the ability to lay in bed in the mornings, but I have a lot of physical pain.

 

I have not paced really since last weekend.  I paced for the first time this afternoon, expecting it to last hours, and it spiked then fizzled after 30 minutes, and now I am sitting at my computer and have been for a while.

 

This past Wednesday, I woke up as usual in unbearable physical pain with a sensation like my diaphragm will pop open. This is a newer pain, I have had it in my chest before, but that has not happened in weeks. It is horrible, and I hate waking up every day to this reality. Then, suddenly, around 10 am, I felt slightly better after putting ice under my armpits and on my chest—a giant ice pack. I felt OK enough to leave the house. I still had akathisia, but I could sit in a car (I did not drive), get a manicure, and get my teeth cleaned. Strangely, being almost upside down in the dentist's chair helped the akathisia. I almost felt "normal" in that position. I got a shoulder massage for ten minutes at the nail salon, which spiked the akathisia spike for two hours. Then it went down again. Reacting to such normal activities and being aware of everything and how it could affect you is enough to drive a person mad.

 

This past week I have observed:

 

--Terror seemed to decrease. The inner akathisia is constantly there but spikes and goes down to different levels. I have been able to pray for the first time in months.

---Muscle stiffness seemed to decline (However, I feel like my teeth chatter and my knees are weak now -- newer symptoms...)

-- I have had quite a few "normal dreams." Like about shoes and parties and stuff. Before this, there were no dreams or nightmares but nothing in between. In my dreams, I am well, not sick.

--I experienced sexual arousal and relieved it. This shocked me as I had no feelings for months other than terror or agitation from terror.

-- I have been able to eat other foods like cacao, blueberries, and peanut butter, and it does not spike pacing like before. If anything, sometimes it seems to calm. This one baffles me.

--Skin sensations wavered

--Tinnitus seemed to waiver a bit

 

I hesitate to express all of this because it could mean nothing, and every time I have reported changes, it seems like jinxing progress. There is so much trauma from traumatic withdrawal.

 

But what does it seem like is happening??

 

I am curious to hear other people's specific experiences tapering with akathisia and how it has changed or disappeared and if what I am describing sounds anything like it might be heading in a better direction. I know nobody can say for sure, but we are an experience collective, and I am curious.

 

No doctor can tell me how much the Seroquel is contributing to or causing the akathisia. I know Chris Paige's story, so I don't need to mention that to me. I do not wish to speak with him, so there is no need to suggest that I do. I'm afraid I have to disagree with staying on this drug and need to taper it more, and I am considering a micro taper and creating a legal emergency plan to protect myself.

 

I am holding and hoping the holding isn't making more chronic akathisia. I refuse psych meds -- NEVER AGAIN. There is still the opioid option. However, I do not wish for another chemical dependence, so I am trying to hold on --even by this string. Emma Saunders and Nicole Lamberson reinstated months off the benzo to stabilize the akathisia, which worked for them and successfully tapered after that. Well, Emma is still tapering she held for one year. I think about their stories. After a year of holding, Emma says in social media videos that she is successfully tapering the Seroquel. She still has Mirtazepine. But these stories are not the norm in terms of reinstating.

 

When I begin to taper, I need a plan B medical plan if things worsen.

 

I understand akathisia does not have a treatment or a cure.

 

Constructive feedback, your intuition, or your experiences would be greatly appreciated.

 

I would be BEYOND grateful for a healing miracle, as I am sure many of us would be.

 

[[Le...]]

It seems like you are slowly getting better rebecca. I would not change anything. I would not taper the seroquel at the moment if I were you. Keep doing what you are doing and give your brain more time. 9 months off ativan is a great achievement. Nervessystem healing is usually very up and down, symptoms wax and wane and non linear. Keep going, all the best to you.

[[dj...]]

If the akathisia and anxiety have eased up the last week, I would say that is a really positive sign.  I would keep things the same.  The tricky thing with benzo recovery is that it is not linear and these symptoms have a mind of their own.  If you switch things up with the Seroquel and start getting symptomatic, you may blame it on the Seroquel when it may have just been the natural course of recovery and nothing to do with the Seroquel. 

 

 

Honestly, I’d leave the Seroquel alone until you feel mostly healed.  I know taking an atypical antipsychotic is not desirable but 25mg is a baby dose and incredibly unlikely to cause many of the problems associated with antipsychotic use.  People with schizophrenia take 400-800mg.  At your dose, it’s basically an antihistamine.

 

 

[[dj...]]

Rebecca, I think I’m about 2-3 weeks behind you.  My jump date was Oct 5th.  I hope you are finally starting to see some improvement.  I hope I see some too.

 

I would give anything for this muscle tension to ease up.  It has been raging the past couple months and has gotten worse.  It feels like my entire body, including my head, is getting squeezed 24/7 and it’s quite unbearable.  Can hardly do any physical activity (like walking more than 30-40 yards) without the tension and squeezing getting worse.  And it will basically last at that severity the rest of the day.  I will go to grocery and walk to the pool in my complex (about 50 yards away) just to get outside but that’s the extent of my physical activity.  I would kill to be able to go on a real walk right now.  This sure will make me appreciate the small things.

 

Didn’t mean to get on a tangent there.  Misery likes company.  I hope you are seeing real strides for once.

[[Re...]]

Last night I was up at 4 am been pacing, moving, and rocking since then. 9+ hours now. I can't take this much longer. It just switched back on. I don't know what is what. The Seroquel the benzo withdrawal. This is absolute hell. I have started to get so agitated I scream and I never did that before EVER. I feel trapped in a cage.

[[...]]

Hello Rebecca,

 

You had a small improvement, although now you don't see it, you improved. Hold on to that and wait until you get better again. As the peers say, this is not linear.

 

I'm so sorry for what you and the rest of the people on this forum we have to go through, but you are not alone. Keep going!!!

[[Re...]]

I just don't know if I am doing the right thing trying to slow-taper this drug while experiencing akathisia because it is not clear what is causing what and I am suffering again.

[Guest [...]]

I just don't know if I am doing the right thing trying to slow-taper this drug while experiencing akathisia because it is not clear what is causing what and I am suffering again.

 

This is only an intuitive response, Rebecca.

 

I’d be reluctant to taper anything whilst still in recovery from the benzodiazepine medication. I imagine the last thing my brain would want whilst trying to heal and rebalance, is to continually have the goal posts moved…

 

It may be worth keeping in mind that these potential improvements you’ve been experiencing (although still waxing a waning), have actually been occurring whilst holding your dose. 

[[ne...]]

Exactly me:

 

"I would give anything for this muscle tension to ease up.  It has been raging the past couple months and has gotten worse.  It feels like my entire body, including my head, is getting squeezed 24/7 and it’s quite unbearable.  Can hardly do any physical activity (like walking more than 30-40 yards) without the tension and squeezing getting worse.  And it will basically last at that severity the rest of the day.  I will go to grocery and walk to the pool in my complex (about 50 yards away) just to get outside but that’s the extent of my physical activity.  I would kill to be able to go on a real walk right now.  This sure will make me appreciate the small things."

 

Any activity/easy exercise and BAM-it increases tenfold.