Londoner: any help would be much appreciated

[dirtvoid]

So pleased to hear that you are doing better and that the reinstatement is helping - so interesting that these drugs are active at such tiny doses - seems like there is no logic in how the doses are decided and marketed. 

[Londoner]

Thanks so much Dirtvoid.

Yes, it's very disconcerting how unpredictable these drugs are. This is actually my second reinstatement during my life. Back in 2011, on doctors advice, I reinstated 100mg after being off Sertraline for 2 months, during which time I had been ramped up on high doses of Venlafaxine. Back then when I reinstated I went totally mad and had akathisia. I did eventually stabilise after a 3 weeks but I continued to get lots of side effects long afterwards.

That's one of the many reasons I was so nervous of reinstating this time round even at small doses. Thankfully it seems to have helped and I'm just so grateful that this forum is here to guide me.

Depending on how things go, I plan to stay on this dose for many months and then come off it extremely slowly. Once I'm free from these drugs I will NEVER mess with my brain chemistry again or see another psychiatrist so long as a live.

 

How are you doing Dirtvoid?

[Londoner]

I have had another wave of the inner restlessness and super sensitivity today. It started building from when I woke up at 9am and has continued through the day. I was prepared for another wave but it's still tough to deal with. Thankfully it hasn't been so bad I had to call emergency services. 

I will be taking my 5th dose of 1mg Sertraline in an hour. I guess at this point the only thing to be done is to carry on with the 1mg and monitor the situation without changing anything. Is that right? Should I consider increasing the dose at some point?

Even though the last 4 days have certainly been an improvement on last week, I am still counting down the hours in the day and seeming to get a range of symptoms, to various degrees of severity cycling every few hours.

[Gridley]

1 hour ago, Londoner said:

I guess at this point the only thing to be done is to carry on with the 1mg and monitor the situation without changing anything. Is that right?

It takes 4 days for a reinstatement to reach full strength in your blood stream and a few days more to register in the brain.  So, yes, continue with the 1mg, make no changes, and monitor the situation.  Daily notes on paper is a good idea.

 

It's a very encouraging sign that things have improved since last week.  Keep in mind that the purpose of reinstatement isn't to eliminate withdrawal symptoms altogether (though it does for some) but rather to bring them down to a tolerable level.  So the reinstatement at this point seems to be working.

[Londoner]

Hi Gridley,

Thanks so much for your note and guidance. I'll be hanging on in here, praying for a window. I'll continue to take daily notes as well. 🙏

[Londoner]

I've been having more bouts of akathisia today. I am tolerating them slightly better than last week, in part because they're approx 10% less intense and because I think the reinstatement has helped my mood somewhat and I'm feeling less suicidal. Nonetheless, I find them extremely difficult. I have been housebound/bedbound since September with all kinds of very painful symptoms but this tension/akathisia is the thing I find most difficult. It's hard to get through it minute to minute.

Luckily I do not have any real responsibilities and there's nothing in my external environment that causes a large amount of stress. On the other hand, it makes it hard to know what I can do to help myself, especially when meditation, EFT tapping doesn't help.

I am absolutely intending to follow your advice @Gridley and continue to hold and monitor the situation. However, I do fear what I will do if it all becomes unbearable. It is day 6 of my reinstatement. Is there a general time period to wait before reassessing and considering what the next step would be? Indeed, is there a next step? If it were bearable, I'd give it as long as it needed but this particular symptom is kicking my butt. I am trying to hang in there.

[Frogie]

@Londoner

 

I have severe akathisia. I have found a weighted blanket brings me some relief. Even sitting in my chair watching tv, but especially when I lay down to sleep. They are fairly inexpensive. Also, epsom salt baths sometimes help to calm me a little.

 

Hope that helps a little.

 

Take care,

 Frogie xx

[Gridley]

56 minutes ago, Londoner said:

It is day 6 of my reinstatement. Is there a general time period to wait before reassessing and considering what the next step would be? Indeed, is there a next step? If it were bearable, I'd give it as long as it needed but this particular symptom is kicking my butt.

Let's see how you're doing on day 10 or 11.  If you notice any improvement, even slight, I would hold at 1mg.  If by that time you see no improvement, there is certainly a next step.  You could updose to 2mg and see how that does.  You want to do this in very small increments (if updosing is necessary) so as to hit the "sweet spot" where symptoms are bearable.  You don't want to overshoot the mark, which can overwhelm your sensitized system, and that can take a while to stabilize from.  So do this very slowly and don't be tempted to do anything rash like a big updose.  I know you're having difficulties, but do this step by step and you'll be much farther ahead without incurring additional problems by taking too much.

[Londoner]

Thanks so much for clarifying my next steps Gridley. I can't tell you how much I appreciate it. Somehow knowing what the next steps might be helps me get through this torture and lessens my fear that I will reach out to my psychiatrist in a panic...that road I know will only lead to misery. Thank you 🙏

[Londoner]

Thank you Frogie for your lovely message and suggestion. My akathisia is primarily intense internal restlessness and shaking/tremor... so I've been unsure whether a weighted blanket would help but I'll certainly look into it. Im also having daily epsom salt baths which I think help a little bit.

So so sorry to hear you too have akathisia. It is the symptom I feared most and now that it's come around my mind often wonders who on earth could possibility deserve this symptom. I hope permanent relief will be with you soon xx

[Londoner]

I'm also wondering whether I haven't been careful enough with measuring exactly 2ml (1mg) Sertraline solution. Given it's such a small dose I think I need to be more careful regarding air bubbles in the syringe. 

[ChessieCat]

If you are making your own liquid, you can use more water.  The more water you use the more accurate a dose you can measure.

 

I am have difficulties getting rid of air bubbles too.  I am wondering if it might work to fill the syringe with plain water and expel the air bubbles and then empty the syringe before drawing up the dose.  As long as everything is done the same way for the duration of the time you are taking that particular dose it should not cause any issues.

[Frogie]

I’m glad I could give you some suggestions that might help. 
 

I hope you have relief soon also. It’s not a fun experience at all.

 

 

[ChessieCat]

20 hours ago, ChessieCat said:

I am wondering if it might work to fill the syringe with plain water and expel the air bubbles and then empty the syringe before drawing up the dose. 

 

I tried this last night and I didn't end up with the large bubble/s that I usually do.

[Londoner]

I'm not sure if it's something that anyone here can help me with but I have a question about smoking. I have smoked tobacco for around 15 years, between 10-20 a day. For a couple of years prior to withdrawing I managed to quit by using a vape pen, eventually getting down to a very low amount of nicotine. A couple of months after I came of my meds I found that I was becoming very sensitive to the vape pen and instead I went back to smoking cigarettes. At the time cigarettes didn't seem to provoke so much of a reaction. However, right now, with my system being extremely sensitised, smoking cigarettes is making me feel significantly worse as well. I'd like to say I will just quit but I know I won't. I am still currently smoking between 5-10 cigarettes a day. I'm trying to think of ways I can cut down on this preferably by trying something that I hope will not cause even more sensitisation. I'm considering either nicotine patches or gum but have not yet tried them.

Does anyone have any experience with cutting down their smoking whilst in a highly sensitised state? Was there anything that helped you to do it? Is it likely that the nicotine patches/gum will provoke a bad reaction? Is one of these preferable to the other?

Any thoughts on this would be really helpful.

[Rosetta]

Thanks for posting on my thread.  I have a headache, so I can’t write much, but I hope your reinstatement goes well and you get some relief.  
 

Two hundred mgs of Sertraline and 16 mgs of Valium! What a nightmare!  Really surprising . . . well, it should be.  We’ve seen worse polydrugging. However, those doses are higher than I have ever seen before.  
 

I have no idea how you came off that much Valium without problems.  I guess the Sertraline had you sleeping so much.  It made me sleep for hours and hours, too.  I’m still in shock sometimes that this sort of thing has happened and continues to happen. 

 

I’ll be thinking of you, and wishing you well. - Rosetta

[Londoner]

Yes I'm absolutely terrified I will never recover/kill myself before I can get through. It's a sad state of affairs 

[Rosetta]

No, you won’t.  You are aware now of what is happening.  You know there is a way through, and you know there is an end to the suffering.  That’s what you need to get through to good health.  People who have no idea what is happening give up.  People who have no hope give up.  We don’t have to do that.

 

The way I made it through was to delay action for another day.  I would say, “I will wait until tomorrow.”  The ultimate option is always there.  It doesn’t go away.  It can wait indefinitely.  The next day I would say the same thing.  You will realize that you don’t need to throw away the option to heal.  Your brain will torture you a little less one day, and you will think, “I CAN make it through.”

 

Then, you will have a wave, and it’s very, very hard to go from feeling better to feeling worse again.  Those are the times when you have to say, “I will wait until tomorrow.” Or, “I will wait an hour or 1/2 an hour or 15 minutes before I think about that again.”  

Find something to distract yourself for 15 minutes.  Anything.  You would not believe the number of B movies I have watched on Netflix.  Some were so stupid that I didn’t even feel extra anxiety.  They had unbelievable plots, and characters I did not care about, but they got my mind off how I was feeling.  Some I couldn’t even follow.  It doesn’t matter.  It was so much better than sitting with my own thoughts.  That you don’t want to do.

 

It may seem hopeless, but it never is actually hopeless.  You can’t think about the future.  Just think about the next day.  The future will take care of itself.
 

Rosetta

 

[ChessieCat]

This is SA's topic about smoking.  You might find some helpful information there and you could ask your question there and other members might give you some assistance:

 

smoking-cessation-nicotine-e-cigs

 

A post I made in the Smoking topic:

 

 

CAUTION:  There is a drug which doctors sometimes prescribe to help people quit tobacco.  The drug is a psychiatric drug.  A lot of people do not realise what sort of drug it is.  If you decided to take that drug you would need to taper it.

Bupropion - Wikipedia

https://en.wikipedia.org/wiki/Bupropion

Bupropion, sold under the brand names Wellbutrin and Zyban among others, is a medication primarily used to treat major depressive disorder and to support smoking cessation.

 

One thing that I found was that there were particular situations which I connected with having a cigarette, which was unrelated to the chemical withdrawal.  For instance having a glass of wine or a coffee, or after a nice meal.  If you are working you might have a routine that you do at a certain time for going outside.  You could keep a note of when you have a smoke and what happened before it and then have a different activity prepared to do instead of having a smoke.  You need to try to differentiate between the physical addictive craving fo the chemicals and the act of smoking and/or the routine/habit you have formed.  For example do you reach for a cigarette immediately after getting up.  Another thing you could try is putting your cigarettes away somewhere so that you have to get up and physically move to get one instead of having them immediately available.  During the time of moving try to encourage yourself to not smoke or at least wait for another 15 minutes and go and do something else.  And when you are doing your activity to distract DO NOT smoke at the same time.  Only do the activity.  Otherwise you will only be introducing a new situation connected to smoking.

 

I'm sure that there would be plenty of ideas online for ways to distract yourself.

[Londoner]

Thanks so much @Rosetta. You have no idea how much I needed to hear that. You write beautifully and it has given me strength. Thank you 🙏 

[Londoner]

Thanks very much Chessicat. That's really helpful. I will look through the smoking thread.

[Londoner]

I've just been reading some information about tardive akathisia and in particular a blog by Dr Shipko. They have scared me quite a bit, although I have followed one of the recommendations that he makes which is to reinstate the drug. I have been taking 1mg Sertraline for a week. Although my symptoms are not as bad as the week I was on my period and having to call emergency services 3 times, I am still getting daily waves of akathisia/inner tension and shaky. 

Are there people who have had success in reinstating their original drug following tardive akathisia? How long did you wait and how much did you reinstate? @Gridley if you have time, do you know of cases that have improved?

[Gridley]

6 hours ago, Londoner said:

@Gridley if you have time, do you know of cases that have improved?

I'm not personally familiar but my knowledge is limited on this subject.  I do know that it has been our experience on this site that we all eventually heal from all these WD symptoms, including akathisia.  It just takes time.

 

Here's one akathisia success story. 

Success stories after many years of withdrawal syndrome ...

I'd also Google "SurvivingAntidepressants.org akathisia success stories."  The facts in these stories won't exactly match yours--we're all different-- but they do show there's hope.

 

[Rosetta]

I am recovering from akathisia.  It’s mild now — a minor problem for me a few times a month.  I only know it’s aka because I had severe aka, and I can feel the similarity to my former bouts.  Otherwise, I wouldn’t know it is the same thing.  It’s not life threatening any longer.  Mostly, having the restless legs and anxiety causes me a sort of ptsd because of my memories of having suicidal aka.

 

Unfortunately, the hormone fluctuations we have throughout the month irritate our nervous systems.  I have noticed that I have other symptoms of PMS or ovulation at about the same time as Agitation/restless legs/insomnia/mild aka.  Of course, I never reinstated.  Severe aka used to be an everyday occurrence.  You may heal a lot faster because you reinstated.

 

Shipko upsets a lot of people.  I think he means well, but he’s speaking the only truth he knows, and it’s terrifying because there are so many unknowns.  No one is doing any tracking or research about this syndrome that a scientist could consider reliable.  SA is becoming a database as are other online forums, but SA can’t be a scientific, controlled, data gathering operation.  No one can verify what we post here. 
 

Shipko is saying he does not recommend tapering to everyone because of the risks that are unknown. All kinds of substances in our daily lives can prolong the dysautonomia that is protracted withdrawal.  Over time, you will notice what affects you personally, and you can research here to discover the most common pitfalls during recovery (such as dental work and the numbing agent used for that or being floxxed by antibiotics like Cipro.) However, for those of us who didn’t know the risks we were taking and are in this boat for the long term, there is a lot of hope created by SA when one has been here long enough to see it.

It’s going to be ok.  It’s all very scary in the beginning.  Just keep reading and learning.  I’m very hopeful for everyone here, and I’ve been a notorious pessimist for years now!
 

 

[Londoner]

Thank you so much for your posts Rosetta. You have so much wisdom. I keep on going back to words 'You can’t think about the future.  Just think about the next day.  The future will take care of itself.' They have helped me so much. Having suicidal akathisia like I did last week is such a traumatic experience and my mind is constantly trying to figure out ways to ensure that it never happens again. My period will come again in a couple of weeks and I'm scared. But it's best if I focus on the now and the small improvements I have seen in the past week. I have reinstated and I hope that that might provide some protection as well as time and acceptance. I am in an appalling wave now but perhaps I will have a window soon.

Was there anything that helped you to endure the suicidal akathisia? I called the emergency services four times during that week because I just couldn't cope. I also took some antihistamine and propranolol drugs but I'm glad I haven't had to take them the last week. What I fear most is it coming back and during that panic I decide to do something stupid like go on another drug at a higher dose. 

Thank you again and hope you're having a good day 🌼

 

 

[Pawlove]

As a poly drugged survivor and on my last wd I have had some akathisia with lyrica wd but with paxil it is worse. @Rosetta, I loved what you said about the fact that once we know what's going on we can get through it. I have been on benzo buddies for almost 2 years and would not have survived without it. When I had a nightmare CT wd in 2018 from paxil (20+ years of use) I wanted to die. I had not idea for 4 months that it was even wd since the sxs were delayed a few weeks. Just being here and on BB I have been able to vent, learn and get support and hopefully offer some as well. I am not a huge fan of technology as far as where it has taken our kids but than God every day for the forums that help me get through this journey. Londoner, I too fear AK more than any other sx and have had temptations to just ditch trying to get off paxil. But I think about what it has done and refuse to give up. I have had severe pain at times, physical, but would take that all day every day over this emotional pain and the weird neuro sxs. I know you will make it because you are continuing to reach out and admit your fears. I would stay away from reading too much horror stuff. It doesn't change anything. @Rosetta, one night when I was bed bound and suffering from insomnia and AK I watched an entire series on NetFlix- many episodes and it was the stupidest plot I have ever seen. I would say that out loud but kept watching and made it through that night.  Distraction is huge. I had such distorted time perception when I did the ct. I would honestly think 45 minutes had passed and it was 5 minutes. It's amazing the ways our brains react to all this. But there is healing on the other side and those good days are the best in a lifetime! I agree that waves are harder after a long run of feeling good and I will wonder if the good was temporary but I know deep down that my brain is just adjusting. Hang in there Londoner. You sound so brave!

[Londoner]

It is now day 11 of reinstatement. I will be having my 11th dose of 1mg Sertraline at 4pm today. I have been keeping daily notes.

The suicidal akathisia started on the 25th March and lasted 7-8 days (through my period). During that first week I rang emergency services 4 times because the intensity of the akathisia was unbearable. I also took an antihistamine and propranolol. I reinstated 1mg of Sertraline on the 8th day and since I have still been getting continuous waves of very difficult symptoms including akathisia with less suicidal thoughts. However, it hasn't been bad enough to call emergency services or take the the drugs. I am still bed bound and counting down the hours in the day. My most bothersome symptoms are akathisia, jittery tension, feeling sensitive to everything like noise/touch, cortisol awakening through night, lack of concentration and focus, intrusive thoughts. I won't list all of my symptoms as they are many but safe to say the akathisia and not being able to just be comfortable in my skin is the worst. I don't have any responsibilities really at this point because I just wouldn't be able to manage them. This has been the case for a long time though.

 

@Gridley and @Altostrata, sorry to bother you again, given the above would you be able to advise me on what is the best course going forward? Very happy to provide more details of symptoms etc if that would be helpful.

[ChessieCat]

So has there been an improvement in your symptoms since reinstating?

[ChessieCat]

1 hour ago, Londoner said:

I also took an antihistamine and propranolol.

 

When did you take these?

[Londoner]

Hi Chessiecat, I took them occasionally during my week of severe akathisia March 26th- April 3rd

[Londoner]

In terms of symptoms, I think my mood has improved a little and my desire to live. However because the other symptoms are still so difficult, this has not resulted in any functional improvement. I am still unable to stand for more than a couple of minutes. The main improvement is that symptoms haven't been so intense that I had to call emergency services or take other drugs. However, I am still finding it difficult to tolerate my symptoms hour after hour, particularly the inner restlessness. I am very used to being non functioning and I am not seeking a quick route back to even low functioning as I know it will take time. However, this wave including akathisia has taken me to a place where every hour is a struggle just to be. It was worst that first week and either the reinstatement or time has decreased the intensity to the extent I don't need to call emergency services.

[Londoner]

I took a 2mg dose of Sertraline today at 5pm. That's a 1mg increase. I hope you think that's ok? I thought it was worth the risk because of the extent of my akathisia symptoms combined with what Gridley posted a few days ago about giving it 10-11 days and then potentially increasing the dose. I really hope I haven't rushed into it too quickly...

[ChessieCat]

To assess how reinstatement is affecting your symptoms use the following comparisons between before and after reinstatement, or if an increase is made, before and after the increase:

 

What symptoms have improved since reinstatement/increase?

 

Are there any new symptoms since the reinstatement/increase?

 

Have any before reinstatement/increase symptoms worsened?

 

[Altostrata]

4 hours ago, Londoner said:

I took a 2mg dose of Sertraline today at 5pm. That's a 1mg increase. I hope you think that's ok? I thought it was worth the risk because of the extent of my akathisia symptoms combined with what Gridley posted a few days ago about giving it 10-11 days and then potentially increasing the dose. I really hope I haven't rushed into it too quickly...

 

Yes, please let us know how you're doing, noting how you feel before and after taking sertraline, particularly the 6 hours afterward. 

[Londoner]

Thanks @Altostrata I had a sleepless night last nigh and I am wracked with anxiety and panic. Right now I'm at a total loss of what to do. If I am too tolerant to Sertraline for it to give me any relief, is it worth trying a small dose of a different SSRI? I am in a really bad place and desperate, please help

[Londoner]

The trickiest thing is that I'm not even sure if this awful 24 hours is a result of increasing to 2mg. The akathisia was building from yesterday morning and continued through the evening (took 2mg Sertraline at 5pm) and on through the night. It's 11am following day now and I'm still incredibly tense, akathisia, shaking, really hard to distract myself with anything. I'm very unsure what to do. I think taking the small Sertraline dose has helped my mood over the past 11 days but it hasn't touched the akathisia. I'm desperate for relief, longing for a day of fatigue and anhedonia like when I was on 200mg Sertraline, just anything to get away from this. The problem is I don't know if there is anything that could get me relief. I am hopefully going to speak to my psychiatrist today. I am planning on getting him to prescribe me some fluoxetine tablets, just so that I have them if indeed you do advise a switch.

 

Any help from anyone would be so much appreciated.