Aeterna: Please help me

[AliG]

Hi Aeterna,

 

Reinstatement doesn't necessarily eliminate all the withdrawal symptoms. While being stable, you may still experience waves of symptoms, which lessen as time goes on.  I can empathize with the withdrawal  insomnia. I have it , also.  I haven't had the akathisia, but I have had a few nights of paresthesia.  It's brutal , and I can totally understand your frustration. Have you tried magnesium , in any form ?  As a supplement, oil  or bath salts ( epsom) ?   It can help tremendously, at times , and some find melatonin helpful.

http://Melatonin for sleep

 

 The magic of time and a lot of patience is needed . Try not to become anxious, about this and practice some deep breathing and meditation, if you can in the meantime.

 

Ali

[Aeterna]

Thank you Ali

 

I have tried magnesium. I don't believe Melatonin is for sale in the UK for some reason. Thank you for your reply. It helps to know there are others who understand.

[AliG]

Aeterna,

 

Have you tried online ?   It is similar here. I have just realized I haven't been taking the " real stuff" bought from the health food store. I'm going to order online. Apparently , IHerb is good . 

[Altostrata]

Aeterna, are you taking any other drugs?

 

Are you taking Prozac at the same time each day?

 

Have you accidentally forgotten to take any doses?

[Aeterna]

Hi Alto 

 

Thank you very much for replying! To answer:

 

I am not taking any other drugs apart from Prozac. (Except Omega 3 and small dose of Paracetamol this weekend once on Sat and once on Sun - I have taken Paracetamol about twice before after reinstatement and it had no noticeable effect so I figure it might not be the Paracetamol) The only other thing I have recently changed - past two weeks - is that I have been taking a very high potency probiotic (Nutri Advanced ProBioplex IB.) I stopped that yesterday as I was wondering if it might be interfering)  

 

I do take Prozac between 7:30am and 10am - It is typically just before 9am but it has on occasion varied by as much as 2 hours. I am wondering though: Does it make a difference if taken on empty or full stomach? Should I take it on empty stomach and wait, say an hour before eating? Should I take it same time as food or should I wait, say an hour after eating. Does that make any difference?

 

I forgot to take a dose only once - about two weeks ago. No noticeable symptoms then - apart from maybe somewhat elevated heart rate.

[Altostrata]

Try to take Prozac at the same time each day. Skipping doses can be a problem, too.

 

It could be the probiotic started to be activating.

 

Your system should show signs of settling down, in waves and windows.

[Aeterna]

Thanks Alto - 

 

What do you mean by "the probiotic started to be activating"?

 

It would be a relief to know what might have caused this as to avoid it in future. The only other thing I would have guessed was that there was a variation in the capsules / liquid itself, but I suppose that is unlikely as I'm not using a generic. (I've heard that apparently there could be slight variations between prescriptions depending on the generic's manufacturer).

[Altostrata]

Sometimes people have unpleasant reactions to probiotics. You might be able to take it again after a while.

[Petunia]

Hi Aeterna,

Do let us know if your symptoms start to settle down now you have stopped the pro-biotic, it seems like the most obvious cause seeing as nothing else has changed.

 

It doesn't make a difference whether you take Prozac with food or not, but as Alto mentioned, taking it at the same time is important and being careful not to skip doses, especially as you are trying to stabilize after reinstatement and dose changes, your nervous system is probably still sensitive to the smallest of changes in its environment.

 

Here is a topic with general information and tips for keeping your NS stable and in the best state for tapering or while trying to stabilize.

 

The rule of 3KIS: Keep it simple. Keep it slow. Keep it stable.

[Aeterna]

Thanks Petunia :-)

 

Update: Today is Saturday; the symptoms started on Monday so it is 6 days in. There appears to be slight, gradual improvement. I seem to have smaller waves through the night and in the morning and larger windows in the evening before bedtime. But I still get up at 3 am and have to move around.

 

One more thing that I am wondering about that could have an effect: Xylitol. It is meant to be a natural sweetner made from birch tree extract with 2/3 the calories of sugar but it does not spike blood glucose like sugar. I've been using it regularly untill all this began then cut it out. When I felt better I started using it again. Cut it out again as on Monday. Xylitol is not like zero calorie sweetners (I know these are definitely bad.) Just wondering if anyone has heard of Xylitol having an effect.

[chicken]

Thanks Petunia :-)

 

Update: Today is Saturday; the symptoms started on Monday so it is 6 days in. There appears to be slight, gradual improvement. I seem to have smaller waves through the night and in the morning and larger windows in the evening before bedtime. But I still get up at 3 am and have to move around.

 

One more thing that I am wondering about that could have an effect: Xylitol. It is meant to be a natural sweetner made from birch tree extract with 2/3 the calories of sugar but it does not spike blood glucose like sugar. I've been using it regularly untill all this began then cut it out. When I felt better I started using it again. Cut it out again as on Monday. Xylitol is not like zero calorie sweetners (I know these are definitely bad.) Just wondering if anyone has heard of Xylitol having an effect.

Aeterna,

Dentist gave me xylitol when I had dry mouth from AD's. After reading on it my gut reaction was not to use it and I didn't. Not sure what effect it would have had on me but If I have a gut feeling on something it is usually is right.

 

Found this on xylitol from http://draxe.com/xylitol-side-effects/

 

Are Xylitol Side Effects Dangerous?

Xylitol poisoning is relatively unheard of in humans, and the xylitol side effects associated with consuming it are generally minimal for most people. However, it has been reported that xylitol can raise blood glucose levels, which suggests that diabetics shouldn’t consume it. (4) This may seem odd to most people as many doctors recommend that people use it to replace sugar because it’s low on the glycemic index!

Another concern that I have with xylitol is the industrialization process that is used to manufacture it. Currently, most xylitol is produced by “hydrogenating” xylose; a chemical process that treats a compound with hydrogen usually with a catalyst such as nickel. (5) There are two major problems with this process.

First, the fact that xylitol is “hydrogenated” should raise some concerns because hydrogenated foods are known to cause: (6)

• Alzheimer’s Disease
• Behavioral irritability and aggression
• Cancer
• Diabetes
• Obesity
• Liver dysfunction
• Major depressive disorder

Secondly, nickel is a known toxin has been linked to: (7, 8)

• Asthma attacks
• Cancer
• Dermatitis (skin allergies)
• Hand eczema (skin rash)
• Indigestion
• Kidney problems
• Lung disorders

At this point, there is no research proving that chewing xylitol sweetened gum or eating xylitol sweetened cookies will cause these things, but I’d be careful before diving in and making xylitol part of your daily natural health regimen.

[Altostrata]

You might stop the Xylitol for a while and see if your symptoms improve.

 

Have you had any alcohol to drink recently? That can cause problems, too.

 

Please keep notes on paper about your daily symptom pattern relative to when you take Prozac.

[Aeterna]

Thank you very much Chicken. That is worth looking into. I have cut it out for now.

 

Alto - I have not had any alcohol recently. I'm keeping notes :-)

 

At the moment I am slightly better - but I am not where I was when I though everything was stabilizing just over a week ago.

 

What worries me is that it is not possible to pinpoint what caused this. Xylotol? Coffee? Probiotics? Almond butter? That's pretty much it, folks.  What happened to me does not seem to follow the pattern of anyone I know of who reinstated. The most frightening prospect is that it might have been caused by the Prozac just stopping to work. (Whether that be due to over/under sensitivity or too low/high level of Prozac is anybody's good guess).

 

My symptoms are so severe and debilitating that it is not possible to ride out for very long. The only way to go is to reinstate and then follow a very careful and very gradual tapering plan. If reinstatement doesn't work, I'm toast. Ask anyone who's ever had akathisia. Anyone. There is nothing like it and there is no way to understand it unless you have experienced it. But everyone who has experienced will agree.

[Aeterna]

Update 2018

 

I haven't posted anything for a while. Here's an update. I really had no choice but to reinstate so I'm currently on 30mg Prozac / day and have been now since then end of 2015. I am not entirely back to "normal" as I was before coming off it. But I can function well and hold a full time job. I have visited Dr. Stuart Shipko in his office in Pasadena and discussed this extensively. I have also spent over two hours in video conference with David Healy. I also had a couple of video conferences with Yolana Lucire in Australia. In addition, I have spoken to a few people who went through this. My conclusion, for the time being, is that if you have akathisia and want to remain alive, then it is advisable to reinstate. This is a subjective view based on my own experience and those of some people who went through this whom I spoke to directly. It has become clear to me that there are no experts as what is going on in the brain is not known to science (at least publicly). SSRI discontinuation has not been studied and I am sure many a salary and bonus depends on ensuring that it never does. All there is to look at is clinical experience of people who are living it. This is not being recorded in a systematic way by any health "authority" as far as I am aware so what is available here on this site is probably the best we have. I hope to be able to taper off to a lower dose in the future, but although tapering has proven to be able to prevent acute withdrawal, I am not convinced that tapering will prevent chronic symptoms that appear months after final discontinuation (whether tapered or otherwise). I realise that this is an unpopular opinion, but my personal experience has borne this out. I tapered 40mg Prozac down to zero over a year and still ended up with unbearable chronic persistent symptoms. Maybe a longer taper would have helped, I do not know. I followed a protocol that David Healy gave me personally. And he knows more than anyone around here. And still, I only prevented acute withdrawal, not chronic persistent symptoms that only appeared months after. I also noticed that there are misconceptions about the two types of phases after discontinuation (acute withdrawal vs chronic persistent). These are two very different sets of symptoms. In addition, I think many people here have misconceptions about the seriousness of akathisia. It is a very very different symptom from most others and I would caution people when taking advice from forum users specifically on akathisia unless those users experienced it themselves or been in close contact with somebody who has. Once agin, please be aware that these are my opinions based on my experience. There are too many unknowns and variables in people's constitutions to be able to reliably predict outcomes. Maybe one day I'll be rid of it but I am less confident now than when I initially started down the tapering road. I am hoping that over the years thing will change with science and pharma but I am not holding my breath. From what I can tell the depth and extent of the corruption is of such breathtaking scale that extracating society from it is not likely in the forseeable future. 

 

 

[Marta]

How are you today?