TheWayBack: Hoping to stabilize soon

[TheWayBack]

I forgot to mention that the melatonin tapering had almost no effect on sleep quality. So I can still sleep OK. However the tapering gives me huge muscle stiffness in the neck and face, so that's a reason for a dopamine relation i guess.

[DMV64]

I am amazed at how you can think all these multiple variables through. I hope you get relief!

[TheWayBack]

It's not just me, there are some knowledgeable people at a Akathisia facebook group. Severe neck muscle stiffness are the first signs of dystonia. And they resolve with me almost completely with my cold showers, together with most of the akathisia.

 

I have also a reasonable simple drug problem, considering I only took two different drugs. Only two possible culprits for the akathisia, escitalopram (which i quit) and melatonin. Tapering melatonin gives me severe muscle stiffness and it changes the akathisia-profile a bit. With both of these gone, there is nothing that could prevent healing. I just need to be 100% sure before I start taking something like cyproheptadine. The other avenues that were recommended by psydocs of me were mainly strong anticholinergics (that can cause dyskinesia, no thanks!).

 

Finally almost sober from the cannabis. Nothing for me at the moment. Way too strong and way too psychoactive.  We can't choose our strains here like people do in the USA. Everything here is high THC, almost no CBD. And pure CBD (which we can get) does nothing for akathisia for most. So unless I go haywire on the aka, I'll steer clear of cannabis for the moment.

 

Tapering the remaining melatonin is not as easy as I expected, so I have to remain on 0.15mg for a couple days. Can't risk too much now.

 

 

[TheWayBack]

Today extreme akathisia again, exactly like when it started a year ago. And now in the late evening, extreme anxiety...

This has been growing over the past one and a half week and is peaking extremely.

 

Very frightening, that's for sure. Never been this bad in many months. I can only hope for lots of improvement soon, otherwise I'm at wits end. They say after the worst times there can be the most improvement. Let us hope so... And just now when my roadtrip with my wife is starting in a couple of days. Bad, bad, bad... I have Xanax ready next to my bed, this is a sign of great fear...

 

[DMV64]

Oh sorry to read this!! I hope it gets better soon!

[Carmie]

On 7/24/2018 at 7:24 AM, TheWayBack said:

Today extreme akathisia again, exactly like when it started a year ago. And now in the late evening, extreme anxiety...

This has been growing over the past one and a half week and is peaking extremely.

 

Very frightening, that's for sure. Never been this bad in many months. I can only hope for lots of improvement soon, otherwise I'm at wits end. They say after the worst times there can be the most improvement. Let us hope so... And just now when my roadtrip with my wife is starting in a couple of days. Bad, bad, bad... I have Xanax ready next to my bed, this is a sign of great fear...

 

 

Hi Thewayback, 

 

I was so sorry to read this. How are you doing today? Are you on your roadtrip?

 

Yes, this journey can certainly provoke great fear in us. We can only try n get through every moment the best we can when waves are bad. I keep adding more things I can do for distraction to my repertoire. 

 

Sending hugs and I hope things settle down soon🤗

[TheWayBack]

Hi everybody

 

You are all so kind! Today marks my 6 month since zero. yey?!... And exactly a year when this hell started... yeyy....

 

Anyway, after the last post the akathisia stopped. STOPPED. It was extremely intense the day before, even when going to bed, and I couldn't believe it either at first. I'm at a constant dose of melatonin 0.15mg now and I'm not changing anything now.

 

This however doesn't mean that I'm OK. A huge WD wave is here. And things are very intense. Very high anxiety to extreme anxiety many hours a day. Sometimes reasonable OK in between, considering the past months with akathisia. Sometimes I have been able to catch a tiny breath. My mornings are evil again. My sleep is still OK. Loads of trouble with dystonic reactions it seems. Difficulty moving my neck, bruxism like never before, stiff face muscles. Very frightening. And my nerves were already so raw, panic flashes were already happening all the time... Now using all my free mental time to practice Claire Weekes again and calmly accept the situation. Back to square one. But the moments the wave is less intense feels like incredible relief. No akathisia!!! Able to stand still and listen to someone! Sitting in a chair without every nerve in my body wanting to explode. IN-CRE-DI-BLE. I'm trying to enjoy it, anxiety or not.

 

The rest is the usual WD stuff; anxiety, palpitations, headache, extremely low stress tolerance, my symptoms are cycling very fast again, like I have four to six phases in day.

 

Melatonin is evil. It's on a list of dyskinesia and dystonia inducing drugs. And akathisia being family from those... Nobody ever told me. Well people, now you know

 

Sources:

• https://www.movementdisorders.org/MDS-Files1/Education/PDFs/Middle-East-Continuing-Education-Course---Amman-2016/Al-MelhDrug-inducedMovementDisorders.pdf
• https://www.bcm.edu/neurology/pdf/poster_pdcmdc_Meds_TDysk_ANA.pdf

 

There were some more research papers I found earlier, but can't find them at this moment. Will post this in the future, there is one link in the first PDF, but it points to paid content. It was that case report I mentioned earlier. It is available somewhere without a paywall.

 

My roadtrip starts the day after tomorrow. I hope this wave will be over a bit by then. I'm getting afraid, like really afraid, but I can't be because this will greatly increase my anxiety intensity. Darn difficult times.

 

I wish you all only the very best!

 

Lots of love and I guess I should get back to you all in two weeks.

 

 

 

 

[Carmie]

Hi thewayback, 

 

Soooooo glad your akathisia has subsided💚

 

[TheWayBack]

Hi everybody

 

Back from the roadtrip. What an adventure, driving 1300 km in bad WD, sleeping in our own made camper van (made in high anxiety). The first days were very bad, the brutal WD started couple days before the trip and went on during the trip. Fortunately, after three days I got some relief and got some good moments. I maybe told you all, that cold water brings relief for me, and the mountain lakes in Switserland and Italy gave me just that. Relief. So the beginning of the trip was tremendously hard (had to take a tiny bit Xanax 0.12mg after the first day driving for 8 hours). The days after I was plagued by some more gruesome anxiety, but then the clouds lifted a bit. At the end of the journey it started to go down again, unfortunately.

 

NO akathisia however, only brutal WD.

 

I'm home now, and the WD has flared up again, incredible unstable, moods change like 20 times a day, anxiety is sky-high. Not the best time. Still holding the melatonin at the 0.15mg. Dystonia still not gone. My neck and face feel like someone injected glue in my muscles. Very frightening, and this only adds up to the already very high anxiety. I try to cope and do some chores here, but it is difficult.

 

Work starts again in 7 days and I feel like I'm back at square-one. I started working last year after summer when this hell started and it feels I'm back at the same spot.

 

My biggest hope at the moment is that the dystonia will leave me soon, so I know I don't have to reinstate the melatonin, I'm very scared to do that... Inducing akathisia on myself, brrr...

 

And please some stability...

 

Thank you Carmie for the wishes, and I can only wish you the very best!

 

 

 

 

 

 

 

 

[TheWayBack]

First day at work here.

 

The past days I have had 2 good semi windows lasting a couple of hours. And closing with akathisia again. So it's back... Woke past night around 3.30am with anxiety, that's been a while...

 

But now again back to huge anxiety and restlessness. Month 7 almost here. And back to month 3 in terms of WD/akathisia. Rumination is back to psychotic levels.

 

Dystonia in waves, going to neurologist this friday hoping for some insights in the dystonia.

 

Very difficult time for me.

 

I can only hope on some improvements soon, I just read Aeromans success thread and he got big improvements around 10-12 month mark and he CT'd 10mg. Don't know where this will put me with the adverse reaction and the 1.4mg-1mg jump....

 

So much anxiety, so much waves during the day, so much instability... Bit negative here, but a rational me should say: HEY DUDE YOU FELT PRETTY OK FOR A COUPLE HOURS PAST 2 DAYS. BE HAPPY FOR THAT.

 

I try, I try...

 

 

[Carmie]

Hi TheWayBack, 

 

Im glad you got away on a road trip, it sounds like it was stressful due to withdrawals but it’s great you had a few good moments. When I’ve done things while in a bad wave n I couldn’t really enjoy them I would just say to myself that at least it was a good distraction.

 

Im sooo sorry the akathisia is back. It subsided for a bit though, so maybe you will have more windows of it subsiding. 

 

I love reading what you write, loved the last sentence: 

 

“ Bit negative here but a rational me should say: hey dude you felt pretty okay for a couple of hours past two days. Be happy for that. I try, I try....” 

 

It made me smile. It’s good to put some humour into this horrific journey we are on. 

 

Wishing you many many more hours in the future that give you some relief💚

 

 

 

[TheWayBack]

Hi Carmie, glad I was able to put a smile on your face

 

I went to the neurologist (specialized in movement disorders) and I was very happy he was very understanding of my akathisia and my dystonia type symptoms. However, he wasn't sure it was dystonia. I'm due for an EEG this friday and a MRI in three weeks to check my basal ganglia. I'm very very happy he supported all my deductions on the akathisia, the melatonin, the Lexapro, and the resulting dystonia. He was happy to work with me. And was very impressed with all the knowledge I had gained on my condition. A nice man to work with it seems.

 

Month 8 after zero starting. WD-wise, there is a lot of change happening. Don't know yet if this will be good or bad. I get insane WD-anxiety again, a lot. I get akathisia on other times of the day than usual.  The akathisia is a bit less in intensity then usual. I get extreme restless legs sometimes, lasting for an hour or so. At the other hand, I get longer semi-windows, where I feel a bit more stable for longer times. Sometimes it feels like healing is taking place, just to be back to square-one with WD intensity symptoms on other moments.

 

I started tapering the melatonin again, the neurologist wants me off them asap. He too, sees the danger in the D2-blockade of the melatonin. But he wants me on Baclofen to support the muscle spasms for a while, especially when tapering/stopping the melatonin. A quick google showed me the benzo-type action combined with the calcium blocking activity of Lyrica and others. Not to mention the extreme WD problems this could give. He, however, seems to support the idea that this is not a CNS-drug, but a parasympathetic drug only. Hmm, works like GHB, Lyrica, Valium, ... I'd pass for now, first see how bad this dystonia can get. I'm so close to zero, maybe this won't get much worse.

 

I will know in a short while how the akathisia will evolve without the melatonin. It does seem the intensity is reducing somewhat over the past 1.5 months. Fingers crossed.

 

Some nice quotes that I keep repeating in my head:

• '“I hated every minute of training (WD in our cases), but I said, ‘Don’t quit. Suffer now and live the rest of your life as a champion.'”  - Muhammad Ali"
• Every day you have the energy to make it through that particular day. You don't have the energy today to make it through tomorrow and the next, but you will have the energy for tomorrow, tomorrow" - Joel Osteen
• "Say to yourself, 'I can make it for another 24 hours'" - Joel Osteen

 

This will end one day.

 

I had a pretty darn good day (considering the state I'm in of course) two days ago. Went to a family-animal-zoo-park thingy with my familiy. I could laugh for many hours through the day. This was VERY nice to have. I can't imagine having this experience 6 months ago. So there is progress, however painstakingly slow.

 

So this post is more hopeful, and written on a less bad than usual morning. There is a light at the end of the tunnel. Keep the faith, all.

[Carmie]

Hi TheWayBack, 

 

Thanks for dropping by my thread the other day. I’m glad u found a neurologist that understands, that must be a great feeling.

 

Im really sorry u get akathisia, I had it bad last night. I changed from tablet to capsule four days ago. It’s horrible when u can’t sit still. I’m glad that your akathisia is getting less intense.

 

Let me know how your akathisia goes once you’re completely off the melatonin. 

 

I love your quotes. I might have to steal them.😄 I love that you got to go to the zoo too, I looove animals n nature. It always make me smile.

 

You’re eight months out now. Wow! The further out you get the more healing. We will all get there in the end.

 

Sending hugs🤗🤗

[TheWayBack]

Hi everybody and Carmie 🙂

 

The neurologist had me take an EEG and a MRI. On the EEG he could clearly see the hypersensitive state I'm in. Akathisia diagnose was also again confirmed. The MRI came back OK, that was a relief. The MRI itself was hell on earth. I was having a huge akathisia wave at the same time of the MRI. That anxiety experience is for sure in my top 5 of extreme situations. Damn...

 

But it came back OK and the neurologist is pretty convinced I'm going to recover. He prescribed me Baclofen 10mg (up to 2x a day) against the painful muscle contractions. Tried a low dose (2.5mg) to test the waters. No negative reaction, that was good. But didn't start taking it yet daily or occasionally.

 

Tapering the melatonin is giving me a lot more trouble than expected. Extreme anxiety, like in the first months of the jump to zero with the Lexapro. The dystonic reactions can be very intense and can cause high amounts of pain and anxiety. My neurologist confirmed again that the melatonin is being problematic with the akathisia and dystonia-like withdrawal reactions and wants me off (but slowly!). So I'm now at 0.05mg and in my last 1 or 2 weeks on it.

 

Maybe again another call to Alto; please add a warning in the Melatonin thread. Should this information have been available in the thread a year earlier, I probably had been in a lot less trouble than now.

 

On a more positive note: I had another window from the akathisia, but a much better one. Truly a calm moment (couple of hours) like never before. Unfortunately the tapering of the melatonin is making my akathisia jump all over the place. Sometimes as bad as right at the start, sometimes at times it never came before (like in the middle of the night). And sometimes a window it seems. I'm hoping that in a month or two my akathisia will gradually lessen when I'm off the melatonin. And that the dystonic reaction will subside soon after... But that is wishful thinking of course.

 

Now white-knuckling through the days hoping for improvements and a window ofcourse. Sometimes I'm really at wit's end. 14 months of akathisia 😢

 

But again, no other choice than to persevere and hopefully beating this demon. I can make it until tonight. Tomorrow is another fight.

 

I wish everybody all the best.

Edited September 20, 2018 by SkyBlue
un-bolded bolded fifth paragraph

[TheWayBack]

_________________________________

 

MOD NOTE:  Please see this post

_________________________________

 

I'm 100% sure as the akathisia started on a updose. And every symptom changed over the months, but this one (and the main distressing one) keeps persisting.

 

I'm not going to take other meds now. I know every possible med used for akathisia. I have found an incredible smart neurologist with extensive knowledge on akathisia. First the melatonin and then we will see he says.

 

My posts are now being moderated after a post delete when I gave someone information on akathisia, so I'm not going to post much anymore. If anyone needs information regarding akathisia, please do PM me.

 

Edited September 18, 2018 by ChessieCat
added mod note

[TheWayBack]

 

Please see Altostrata's response to this post.

 

Ok, ok. I get it, but it can be even more dangerous to reinstate an SSRI in heavy WD than to add something like a simple beta blocker (which could save lives in case of akathisia). And this is something often overlooked on this forum. Reinstatement is always first line treatment in here, but it can be really disastrous.

 

 

Edited January 18, 2019 by ChessieCat
added link to altos post

[Altostrata]

8 hours ago, TheWayBack said:

Ok, ok. I get it, but it can be even more dangerous to reinstate an SSRI in heavy WD than to add something like a simple beta blocker (which could save lives in case of akathisia). And this is something often overlooked on this forum. Reinstatement is always first line treatment in here, but it can be really disastrous.

 

 

 

TheWayBack, you don't know what you're talking about.

 

You've appointed yourself the akathisia expert. You seem unaware that there is a spectrum of symptoms that may or may not be "akathisia," and many members here adopt the term when they do not necessarily have the condition.

 

You are also quite certain you know of effective treatments for akathisia. I think this might be the wrong Web site for you.

 

We don't want people here giving people advice that might get them into trouble -- unless you pledge to be there to hold that person's hand if your suggestions go wrong. I do not perceive your having made that commitment.

 

In general, we don't recommend new drugs to people because we're not qualified to do so and we don't know what will work. On the other hand, you are quite sure what will work. This is a dangerous attitude and why we're monitoring your posts. We don't want you leading anyone down a path of self-injury.

 

PS Your knowledge about reinstatement is also lacking. It's unlikely melatonin caused your problems, which are related to your use of escilatopram.

 

PPS I hope your neurologist has guessed right about your drug treatment. I have never heard of withdrawal hypersensitivity displayed on an EEG. I had paradoxical reactions to baclofen myself.

[TheWayBack]

Alto

 

I sincerely appreciate all the time you put into this forum. And I don't want to be a rebel of some sort. I apologize if I came over as one.

 

All I wanted to do is to give some guidance to people that most likely are affected by this condition. The akathisia is often so severe that people will consider the s deed, very fast. I've seen it over and over again over the past year. They will, in most cases, be committed to a psych ward. In there, they too, don't consider the akathisia possibility and drug them with things like Seroquel, Haldol or Zyprexa. Which of course makes things 10x worse and makes the road to recovery multiple times more difficult. That's why I tried to give some guidance in the form of a review of certain common 'treatment' drugs, as prescribed by doctors (like a low-dose beta, which is quite harmless in the grand scheme of things). Instead of nowhere to turn, and unknowingly get polydrugged beyond belief. I clearly stated what to avoid and what to look out for. Isn't Lamictal something that is often suggested by you or other mods, too?

 

I can say I have quite the understanding of akathisia by now, the different theories on its working, the multiple causes and their respective methods of treatment with their possible risks. Reinstatement in the case of withdrawal akathisia can be disastrous. This must be clearly stated. Even Dr Shipko mentions this often. He often chooses to use long term benzo medication to help people through it, instead of risking to make it worse by a reinstatement.

 

If people have questions regarding their akathisia condition or need some support, I'm happy to help them through. I mentioned that in one of the deleted posts. Something about PM me, or something (can't see it anymore)

 

I'm not the all-knowing expert on things, no one ever is. But one must always be open to new knowledge that has come to surface. Like, for example, the melatonin dangers, as stated in quite a few scientific case reports and guidance manuals, and seemingly is common knowledge by neurologists by now. Should this, for example, not be included in the melatonin thread?

 

My akathisia is certainly caused by escitalopram, no doubt about that, but most likely hindered in healing or exacerbated by the melatonin. I'm almost off and hope to be right very soon.

 

I won't make the same mistakes again. Again I apologize. It is your forum with your rules. I'm just a visitor. I will go back to reporting on my own situation and the occasional hopeful reply to an other thread.

[Altostrata]

Yes, we are well aware of the severity of akathisia.

 

We all want to help people who are suffering from drug-induced symptoms. I appreciate your interest in that. You probably don't realize it now, but your certainty that you understand akathisia is unfounded. I don't want you directing people to take this or that drug, they might mistake you for someone who actually has the answers and follow your advice.

 

You might express yourself as "this is what worked for me," which allows only that it worked for you, not that you've found the cure for everyone. Note that I mention lamotrigine only in specific situations (criteria of which you're unaware) and because it helped me, not because I read about it on PubMed.

 

Countless people here have been enthusiastic about having found a brilliant neurologist or psychiatrist who knows exactly what drugs to take, and then been disappointed. As I said, I hope your treatment works for you.

[JanCarol]

On 9/18/2018 at 11:41 PM, TheWayBack said:

a simple beta blocker (which could save lives in case of akathisia)

 

A beta blocker is not simple.

 

My experience with beta blockers was that - when the drug wore off, the symptoms returned 5-fold.

 

That doesn't sound like a "simple" answer - it sounds like chasing the tail of akathisia - or any other symptom.

 

Additionally, beta blocker has a side effect of depression.  I seem to recall that was why I went on the cursed drugs in the first place.

 

Time is the best solution.  Time, and learning to "surf the symptoms" - observing, being curious, but not engaging with them.

[Carmie]

Hi TheWayBack, 

 

How have you been doing?💚