LaurafromCT: finally off SSRIs but it's challenging

[LaurafromCT]

I feel like the Trileptal didn't agree with me after a while. I felt like it was making my "morning sickness" worse. 

 

I am so conflicted what to do next.  I feel like the imipramine is making my brain feel ringing and tingling all day. I feel sour and acidic all day like my brain ate a pickle. It's so hard to describe. My legs seem to be getting worse too.

 

If I was going to switch to another SSRI would you recommend cross tapering over?  I worry that adding Lamictal will exacerbate my morning sickness. It seems like my CNS is so fragile right now.

 

I am working on typing up some symptom lists. Thanks Alto.

 

[Altostrata]

Trileptal was making you nauseous?

 

Laura, I still need those daily drug schedule and symptom notes.

[Colonial]

Hi there,

My concern is your making too many dose changes and med changes too fast.

At this point, you've recently tried so many things, and relief is not going to come in 30 days.

Continually adding more drugs (in my opinion)  is just going to make it worse.

 

You reduced the imipramine in October, added Trileptial at 37mg in November, Discontinued Trileptal in January...

 and took a 10mg dose of (I think Prozac) for 1 day out of nowhere.

In only 4 months time, you've "tampered" with alot of things, even taking a dose of this or that just once "just to see" what it would do.

 

Because of it, it's nearly impossible to determine what symptoms are a delayed reaction to a dose change or to a newer med.

The problem is, and this is my personal opinion, your expecting to see major positive change too quickly. 30 days isn't realistic.

And every time You change a dose or add a new medicine in, your just delaying the time it's going to take to feel better.

Only God knows what adding the Lamictal AND OR Lexapro will do.

 

Basically, with this many drugs and this many dose changes, there's no realistic way to get a pattern...

Because one dose change can bring back WD symptoms from another drug.

 

For example, if I don't take my pain meds for a few days? I "technically" go into Opiod withdrawal, and guess what that does?

Both my Wellbutrin AND My paxil WD symptoms CAN come back, even if I haven't touched my paxil dose.

This is because when Your central nervous system is this destabilized, ANY DRUG CHANGE CAN SET OFF AND BRING BACK ANY SYMPTOM FROM ANY DRUG WD.

I've been off Wellbutrin over a year...

But the symptoms specifically related to just THAT DRUG can return when I "fast" from the opiods and or I make a Paxil drop as well.

 

So, it's not even possible to know, which symptom is being aggravated by what adjustment Your making...

Or which symptom is really "proper" to which drug, or combination of them.

Since in the chaos, Your brain can re instate a "Past symptom" that You had from a different drug.

It takes You brain longer to "heal" , further out past the time your having symptoms, and any drug added in or changed during that time can bring back other symptoms.

 

I can't say which med issue the leg problems are from, but they do seem to be WD Related.

Constantly adding new drugs into the picture is, my opinion, only going to make You worse and delay Your healing instead of helping it.

 

If You think the reinstatement failed, the issue is, IS that because You didn't give it enough time, or if you had a reaction, based not necessarily on that ONE MED,

But on the constant tampering with Your brain?

You might "think" your having a reaction to a new med, but it could just be Your brain having now to once again, over compensate for everything Your throwing at it.

 

Your brain is in a free for all right now.  If You think Your going to find that "one med" that's going to make it better, I think Your setting Yourself up,

Not only to be disappointed, but just making deciphering Your symptoms more complicated, but delaying your long term progress.

 

Good luck. 💝

 

 

[Colonial]

 2018 - November - feel like I am really developing serotonin toxicity.  Decide I have to get off everything ASAP.  taper off imipramine, going from 75 mg to 2.5 mg over 2  months

Jan - bridge to Prozac. taper from 10 mg to 1 mg over 3 months.  Last dose end of March (alternating days).

2019 - March - August - I developed leg/nerve pain which became increasingly debilitating over time. Saw a ton of doctors. No physical explanation.  September - Leg pain has worsened to where I can barely walk across the room.  Reinstate imipramine at 2 mg

 

I think All of the  "symptoms" Your trying to treat could still be Protracted withdrawal-reaction from this original landslide from Nov 2018 to March 2019.

This was ONLY a year ago altogether.  And it was only 7 months from March 2019 to Your new issues in Oct. 2019

I don't think Your taking that into account.

 

Now since October, all of the added changes, and now Your having "more" symptoms. 

 

My personal opinion? 

1. Everything Your experiencing is either WD or "reactions" to meds that "seem" to help for a small window, then make You worse.

2. Continuing to "add" a new drug in (Lamactil-Lexapro) is only going to continue this pattern.

3. The only thing that is going to help at this point is a "controlled descent" of anything your still on, and TIME.

 

Reinstatement only "helps" with drugs Your body has not had a reaction to.

You MIGHT be able to get some relief reinstating, but without the in depth "symptom-med chart" Alto asked for, it's hard to give a opinion on it your "symptoms" are a reaction to the med or a WD Symptom.

 

💝

 

 

 

 

[Altostrata]

No matter what, I still need those drug schedule and symptom notes!!

[LaurafromCT]

OK it took me 4 hours; I created a chart for the past month.  So, 30 days of data.  Here is a link which is view-only.  @Altostrata and anyone else I can send you another link where you can comment.  I really hope this is what you wanted.

 

https://docs.google.com/document/d/1xvUJxyzXz8J54UyV4pTN_N4t9BEf-AnHUj1xnQM7K6A/edit?usp=sharing  (I pasted in from Word so some formatting is a bit weird)

 

All I can say is that I wish I hadn't reinstated with imipramine.  I think that reinstatement was absolutely necessary because I was consistently losing mobility and definitely in increasing pain month over month, with no end in sight.  I just wish I hadn't chosen to reinstate on a stupid tricyclic that I was only ever on for about a year.  I think that SSRIs messed up my brain and I don't know if a tricyclic is going to fix it.  IDK.

 

On days like today, where I feel like my brain is full of a million swarming tiny bees, like my brain is just one huge fizzy brain zap all day long, I feel like I have to do SOMETHING and that is when I sometimes move the dose up or down a tiny bit.  Like from 0.036 to 0.035.  I feel like my brain is screaming at me to fix it or make it better.  But overall if you look at the past month I have tried really hard to stay consistent.

 

Looking back to my notes for January, I tried really hard to stay constant at 0.036 mg of imipramine every single day.  I did experiment with decreasing it to 0.030 mg on Jan 30th / Jan 31st because I felt super incredibly sick at that time and I thought maybe I had developed an intolerance to the imipramine.  That was around the time I discontinued the Trileptal and I was in a panic.

 

Thank you so much for your help.

[LaurafromCT]

On 2/28/2020 at 12:26 PM, Colonial said:

Reinstatement only "helps" with drugs Your body has not had a reaction to.

You MIGHT be able to get some relief reinstating, but without the in depth "symptom-med chart" Alto asked for, it's hard to give a opinion on it your "symptoms" are a reaction to the med or a WD Symptom.

 

 

@Colonial  I totally appreciate your input.  For the record, the 10 mg random dose of prozac was last September when I was flailing around and not consulting this site. :-)

 

Can you please explain what do you mean by the above: Reinstatement only "helps" with drugs Your body has not had a reaction to.?

 

As you very wisely point out, what I really struggle with is knowing whether my "symptoms" are a reaction to the stupid imipramine or an ongoing WD symptom.  If you (or anyone!) can tell anything from looking at the chart I posted, I would be immensely grateful.  Because I am living this 24/7 and I spend hours thinking about it every day and I can't figure it out.

 

THANK YOU for caring and trying to help!!

[Colonial]

6 minutes ago, LaurafromCT said:

I just wish I hadn't chosen to reinstate on a stupid tricyclic that I was only ever on for about a year.

 

Why? Meaning why do you beleive being on it for "only" a year" is relevant?

I was only on Wellbutrin 6 months and when I cut it in half I had a major WD Episode.

It took Me over 3 years to WD off a drug that I was "only" on 6 months.

 

It only takes a very short amount of time for these drugs to remodel Your brain.

Knowing which drug to use for a reinstatement has little to do with how long You were on it...

But which drug has the best "chance" of helping to stabilize your symptoms due to how much remodeling the entire drug cocktail has done to Your brain

[LaurafromCT]

1 minute ago, Colonial said:

Why? Meaning why do you beleive being on it for "only" a year" is relevant?

 

Well, I was on Lexapro/Celexa for 15 years.  And other SSRIs before that for another 6-8 years.  So my theory is that the Lexapro/Celexa was the big culprit in the whole "remodeling" process of my brain.

But if you have other theories i find that very interesting!!  Tell me more...

[Colonial]

5 minutes ago, LaurafromCT said:

Can you please explain what do you mean by the above: Reinstatement only "helps" with drugs Your body has not had a reaction to.?

 

If Your "allergic" to something, or Your body cannot tolerate a drug for some reasons, those symptoms are different that WD.

IF Your fine the entire time your on a drug and only have issue going off it, that is WD.

If Your fine per se, but just depressed, and you go on a drug and have a massiver symptomatic reaction, that's not WD, Thats a reaction.

That is a med you need to get off ASAP.

 

But when someone tries to go off a med, has a WD reaction that either gets "misinterpreted" as being bi polar, or another illness,

people can get put back on another drug WHILE they are having WD Syndrome.

If they then have new symptoms going on the new drug, it's hard to tell if the symptoms are a reaction per se, or Your brain being in WD and now you throwing an ew drug in on top of it.

 

You've already dabbled with so many drugs, it's hard to tell where your brain is at, and if your seriously contemplating adding Lexapro now on top of it and take it...

And You end up getting worse, it's impossible to say why that will be, a reaction or just the fact that You've been on 8 different drugs since 2017.

You have to realize there's a cumulative effect to all of that, and it's going to take time to unravel.

 

[Colonial]

9 minutes ago, LaurafromCT said:

 

Well, I was on Lexapro/Celexa for 15 years.  And other SSRIs before that for another 6-8 years.  So my theory is that the Lexapro/Celexa was the big culprit in the whole "remodeling" process of my brain.

But if you have other theories i find that very interesting!!  Tell me more...

 

The culprit isn't "how long" you were on something, the culprit is how many times your fiddled with your brain chemistry..

as I said, a few months is all it takes to remodel your brain.

There comes a tipping point when your brain can't take anymore and what ever you throw at is is going to be problematic.

It seems like you eventually "pooped" out on the celexa after 17 years, and then you bombarded your brain with 8 different drugs in 2 years.

 

 

[LaurafromCT]

12 minutes ago, Colonial said:

 

It seems like you eventually "pooped" out on the celexa after 17 years, and then you bombarded your brain with 8 different drugs in 2 years.

 

 

If by poop out you mean it made me feel increasingly like I had the flu all the time, then YES. 

 

And if I am ever out in public and I run into the Dr who put me on all of those different drugs in 2017, instead of listening to me when I said I was getting sicker and sicker... my reputation as a nice, kind and level-headed person might be in jeopardy... 😉

[Colonial]

 

I'm looking at your system chart, and You DON'T have the Benedryl twice a day listed on Your med line.

Or the caffeine pill.

 

Benadryl is listed as having MAJOR drug interactions with  11 other drugs. 387 drug interactions all together.

Anxiety is  a major complaint of people using it as well as other things you seem to suffer from:

Dermatologic Rash, urticaria, skin rashes, erythema, photosensitivity, pruritus, drug rash, excessive perspiration^[Ref]

I myself can only take 2 dosages of Benedryl before I'm clammy and shaking and having panic issues.

Musculoskeletal Muscle twitching/weakness.

The caffeine pill, I just can only think it's long term making things worse.

 

If the benadryl causes so many problems, the types of which your describing for people NOT in WD,

I can't but think it may be exacerbating Your symptoms.

Even if it was something You could take fine in the past, it may now be causing you more problems than you think its helping.

The same with the caffeine...Your nervous system needs to rest, not be stimulated.

 

 

[Colonial]

8 minutes ago, LaurafromCT said:

 

If by poop out you mean it made me feel increasingly like I had the flu all the time, then YES. 

 

And if I am ever out in public and I run into the Dr who put me on all of those different drugs in 2017, instead of listening to me when I said I was getting sicker and sicker... my reputation as a nice, kind and level-headed person might be in jeopardy... 😉

 

Lol 💝

It does seem like the classic pattern that, unfortunately, so many have gone through.

Hugs...💝💝💝

[LaurafromCT]

10 minutes ago, Colonial said:

 

Benadryl is listed as having MAJOR drug interactions with  11 other drugs. 387 drug interactions all together.

Anxiety is  a major complaint of people using it as well as other things you seem to suffer from:

The caffeine pill, I just can only think it's long term making things worse.

 

 

I will think about everything you said and thank you for your thoughts.  I don't suffer from anxiety thank God.

 

I try not to take the Benadryl more than once every 2 days if possible.  I agree with you, it's a very "dirty" drug. My Dr. showed me on wikipedia how many neurotransmitters it affects.  But when I wake up feeling so incredibly sick and horrible with the morning cortisol sickness, I feel like I can't hardly stand it and I just need some relief.  I hate to take Klonopin and add benzos into the mix.  I wish there was a morning sickness pill I could take when I wake up feeling so incredibly bad.  I tried Zofran (anti-nausea med) at one point but it didn't seem to work and then I read that it can affect serotonin so it's a good thing I didn't go with that.  Does anyone have suggestions for when you wake up at 4am and just feel like you're going to die?

 

I noticed several months ago that when I had the terrible shaky/shivery feeling in the mornings due to cortisol sickness or whatever, that I would feel almost immediately better after drinking my morning coffee.  So that's when I started taking 100 mg of caffeine which is equivalent to 1/2 cup of coffee.  Is it recommended to discontinue coffee during W/D?

 

Thank you ❤️

[Colonial]

It's pretty much recommended to discontinue any stimulant during withdrawal, since your CNS is out of balance.

But going cold turkey off of caffeine is no joke either, even in healthy people, so you would cut back little at a time.

 

It would be interesting to know if the caffeine is related to another symptom acting up later in the day.

 

Because, Granted, we all feel better after we've had our morning coffee...

But that's because we're all addicted to it, and I think the "rush" you get compensates for the symptoms your experiencing.

But that's no different than an alcoholic temporarily feeling better when he gets a drink.

The problem is it's just repeating the cycle.

 

I used to have 4 cups of coffee a day, so what I did was just decrease it from 8 ounces to 6 ounces  4 times a day for 10 days,

then down to 4 ounces, etc. till I was off.

And that was also 8 teaspoonfuls of sugar less a day as well, it was indeed a big difference for me in my afternoon anxiety and nerve tingling down my legs.

 

Well, let's let Alto look over Your log and see what else she can pick out...

But I know that Benedryl is wicked stuff...😬

 

 

[Altostrata]

Laura, what does "brain glittery" mean?

 

Why do you think the imipramine is making your brain ring?

 

How often do you have the leg itching in the afternoon? When did that start?

 

Are the sensations in your legs like electrical current or are they muscle spasms or cramps?

 

How did you take Trileptal? Which of your doctors prescribed it?

 

How long have you been taking Klonopin every day? I see you take it at various times and dosages. What effect does it have on you?

 

What is your sleep pattern?

[LaurafromCT]

Hi Alto,

 

Please see below.

 

Laura, what does "brain glittery" mean?  - Like all of the molecules in my brain are tingly and sparkly.  It's like my brain is fizzy, like I ate Pop Rocks (do you remember those?).  It's usually accompanied by difficulty focusing, like ADD, which ranges from mild to horrible.  Sometimes it feels like one extended slow motion brain zap.  But it's all day long this tingly feeling which gets better and worse throughout the day.

 

Why do you think the imipramine is making your brain ring?  I just feel like I have had this brain ringing since I reinstated.  It seems to be getting worse but not sure.  I do remember that when I was taking imipramine at a therapeutic dose, I complained of tinnitus to my Pdoc at the time.  I do know that if i increase the dose even slightly, I feel like my brain is in a vise (one day I wrote that my brain felt like an Instant Pot).

 

How often do you have the leg itching in the afternoon? When did that start?  It's not a skin itching but like a buzzy, deep muscle itching.  I am not sure when it started.  Maybe in the past month or so?  Actually I just looked at my notes and I have had intermittent itchy aching all along.  I think it might be made worse by melatonin or benadryl but I am not 100% sure.

 

Are the sensations in your legs like electrical current or are they muscle spasms or cramps?  Electrical current.  It's not spasms.  I do have benign fasciculations in my legs/feet which are

 non-painful twitches and they sometimes go all the way down to the sole of my foot.  The pain sometimes feels like a cramp, esp in my sciatic/glutes.  But more often it's a feeling like my leg(s) are literally plugged into a low voltage electrical socket.  The pain and discomfort reminds me of times I've accidentally buzzed my fingers and gotten electrocuted while plugging something in.

 

How did you take Trileptal? Which of your doctors prescribed it?  I had 150 mg tablets and I quartered them and then weighed them on a gram scale and shaved off bits to make sure they were consistent.  My psychiatrist prescribed it.  He said it would be like putting fire retardant on a fire.  I definitely noticed that if I increased the Trileptal dose a tiny bit, it made my "morning sickness" worse.

 

How long have you been taking Klonopin every day? I see you take it at various times and dosages. What effect does it have on you?  Before WD, I used to take it PRN to sleep, but since going through WD last fall I was really trying to avoid it.  I looked back at my notes and it looks like I started taking again it when I started feeling really crappy at the end of January.  It makes me sleepy and knocks me out.  If I have really bad morning sickness at 3am it helps me get back to sleep for a few hours.  Or if I'm in a lot of pain at night feeling wired, it helps me fall asleep.

 

What is your sleep pattern?  I was always a good sleeper (before this whole mess).  Lately I fall asleep Ok but sometimes need to take something.  I try to go to bed at 10:30 or 11 and I sleep well, until I wake up at 2 or 3 or 4 or 5.  I was having a great stretch back in December when I was sleeping all the way until 6am.  It seems lately I feel sleepy in the afternoon, but if I lie down in the afternoon for a nap, I pass out and can barely rouse myself up at all.

 

Thank you so much.  

[LaurafromCT]

On 2/27/2020 at 10:51 PM, Altostrata said:

Why not take a bit of Trileptal again?

 

I feel dumb. I didn't realize that you were suggesting that I might be experiencing withdrawal from the Trileptal. I thought you meant I should just give it another go.  Anyway I woke up this morning feeling extremely itchy and based on your questions I realized what you meant. I took a shard of Trileptal this morning and I think the itchy feeling is a lot better. 

 

I would still appreciate your thoughts on switching to Lexapro or another SSRI. I was thinking that maybe I could start taking Lexapro at a homeopathic dose to start... super diluted. Idk. 

 

Thank you. 

[manymoretodays]

Hi LaurafromCT,

I do see your Word formatted notes here, or the link to them. 

 

 

Might just be me, but they were slow to pull up, and a bit more timely to view.  Like, as far as having to scroll up and down a lot to see a whole day.  Some really great aspects to them as well,   the bolding, and the columns.  And I know you spent a lot of time on them.  I hope that doesn't sound too critical.

I wonder if you would consider doing this going forward:  Keep daily notes of drug schedule and symptoms

And then just posting a day at a time, right here, on your introduction.  It might save Alto time, when viewing, too.  I'll post the sample note from the link above:

- Time and dosage for all drugs taken throughout the day, psychiatric and non-psychiatric.

- Following each dose, note any symptoms. If you are having a reaction to the drug, it may take hours for a symptom to show up -- that's why we ask you to keep notes all day long.

- If you're not taking any drugs, your symptoms throughout the day.

- Your sleep pattern. Since so many drugs disturb sleep, if you find you're waking in the middle of the night, it could be from a drug you took earlier in the evening. If you're not taking any drugs, there may be ways you can improve your sleep.

And so forth. A diary, in chronological order, looking something like this:
 
6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

 

An appointments diary is perfect for this and can be bought at stationery stores. They have a page for each day with times for appointments which can be filled in with doses, symptoms etc as shown above. Or, you can copy and paste from a cell phone app -- but make sure the result is easily readable.

 

Please do not use spreadsheets, they are difficult to read online and some of us don't have Microsoft Excel to look at them.  You may link to a Google Doc or spreadsheet if you wish.

 

Try the above, and then post, the day after.  You could still keep the google doc going, if that is easy for you to do, and then just transfer over on a separate reply, a day at a time.

And interesting, as I used Trileptal too, much higher dosage to start, and really did not know much about WD, or tapering at the time.  It was my last medication!  And I tapered off it successfully and have been now med free for over 3 years!  Doing better all the time.  Doing quite well now.

It looks like you've had a lot of fairly recent changes, different drugs, rapid tapers, etc. in the last couple to several months.  This can be hard on the nervous system.  I will follow you too now, LaurafromCT.  I didn't really get too much time to, this morning, will read back more, when I can, and have some time too.  Off for a filling this morning!  And ugh.  Hope it all goes quickly!

 

L, P, H, and G,

mmt

 

Edited March 4, 2020 by manymoretodays
to toos usage :-(

[Colonial]

6 hours ago, LaurafromCT said:

I took a shard of Trileptal this morning and I think the itchy feeling is a lot better. 

 

If your reinstating a med, make sure your weighing the dose correctly every day...

The mods really need to know what a "Shard" means dosage wise, so update in Your thread what You took and the date You started again.

 

It could take a week or more to see if reinstating this was helpful or a mistake that makes You worse.

Starting any other drug at this time is a recipe for disaster.

No one will be able to tell You what happened if You had a reaction,

If it was the "Shard" of this a "homeopathic" tinge of that...

Or the 2 of them together that did You in if You get worse or develop new symptoms.

[LaurafromCT]

4 hours ago, manymoretodays said:

I wonder if you would consider doing this going forward:  Keep daily notes of drug schedule and symptoms. And then just posting a day at a time, right here, on your introduction. 

 

I will follow you too now, LaurafromCT.  I didn't really get too much time to, this morning, will read back more, when I can, and have some time too.  Off for a filling this morning!  And ugh.  Hope it all goes quickly!

 

 

First thank you so much for following me and for taking the time to read and help. I know my symptoms aren't as bad as some others' but I feel so hopeless and scared when I think about not getting better and continuing to be in pain. I really appreciate all the help I can get, so much. I hope your filling was painless. 

 

I can try to post my symptoms here. My mom actually helped me type everything up, maybe she can continue to help. Won't it get cluttered and cumbersome though, and make my thread gigantic? 

[LaurafromCT]

25 minutes ago, Colonial said:

 

If your reinstating a med, make sure your weighing the dose correctly every day...

 

It could take a week or more to see if reinstating this was helpful or a mistake that makes You worse.

Starting any other drug at this time is a recipe for disaster.

 

Ok you are absolutely right. I need to be patient.

 

I will try to figure out how many mg I took. The little gram scale I ordered is not quite sensitive enough for tiny amounts (0.03g). I need to search the forum for recommendations and get a better scale.

 

Thank you

[Colonial]

Oh, Gridley posted somewhere on the scale from Amazon...

I clicked on it, it's around $25.00 or so, so You might be able to get free shipping...

I'll look later for the link, if someone doesn't have it off hand... gotta run to Petco to pick up an order 😘

 

[LaurafromCT]

I found the topic about the scale. It looks to be about the same as the one I have, which is to say that it's advertised as measuring 0.0001 grams but doesn't come near that for measuring small amounts. I may have to dissolve the Trileptal in water and figure out the dosage that way.

[LaurafromCT]

Hi @Altostrata or anyone, when you said "take a bit of Trileptal" what dose would you have tried? I was taking 37 mg in January so I reinstated at 20 mg for the last 3 days and now I feel so buzzy and tingly I can barely think. Ironically my morning sickness is almost gone. I am going to decrease to 10 mg tomorrow. I need to type up my symptoms but I can hardly think straight.

Edited March 8, 2020 by manymoretodays
none, quoting only

[manymoretodays]

Hi LaurafromCT,

When did you come off the Trileptal 37 mg?  At what dose?  Was it 37 or 37.5 mg?  Your signature notes 0.37 mg.  Is that correct??

I came off Trileptal, from much higher doses.  I liquified mine, for tapering, and went with 10%, and then 10% every 2 weeks, and then jumped off at 24 mg.  In retrospect, I might have, or in retrospect, wished I had jumped off even lower.

If you have syringes to measure and a mixing container, you could try mixing a solution from your pill/tablet with water.  I used to have to wait for mine to dissolve fully and then swirl it around in the container prior to drawing up a dose.  If you are already using the scale though, there is no need to switch now.  Let me know if you need more information or have questions around getting correct dosages.

1 hour ago, LaurafromCT said:

Hi @Altostrata or anyone, when you said "take a bit of Trileptal" what dose would you have tried? I was taking 37 mg in January so I reinstated at 20 mg for the last 3 days and now I feel so buzzy and tingly I can barely think. Ironically my morning sickness is almost gone. I am going to decrease to 10 mg tomorrow. I need to type up my symptoms but I can hardly think straight.

 

Try the drug and symptom log just like this example:

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

 

What do you mean by morning sickness?  Are you pregnant or do you just mean nauseau and ? vomiting.  I think you'll be okay with the 10 mg, as you were only on the 20 mg for 3 days.  But.....one doesn't want to go too fast with Trileptal either, as too fast tapering could result in seizure activity.  So go cautiously. 

I take it that the buzzy and tingly is a new symptoms since you reinstated?  I got lot's of tingly stuff with Trileptal and then even when tapering down.  Hands and feet that would "fall asleep" sometimes......and then I would have to shake them awake again.  No pain with that though.

I also couldn't think real straight or good, when in more acute WD from Trileptal.  Is this a brand new symptom?  Or has it been since December/January as well?

 

Are you on any other drugs/medications right now Laura?

 

Try the drug and symptom notes, as shown, if you can.

Thanks.

 

L, P, H, and G,

mmt

 

 

Edited March 8, 2020 by manymoretodays

[Altostrata]

See my questions in blue.

On 3/3/2020 at 3:44 PM, LaurafromCT said:

Hi Alto,

 

Please see below.

 

Laura, what does "brain glittery" mean?  - Like all of the molecules in my brain are tingly and sparkly.  It's like my brain is fizzy, like I ate Pop Rocks (do you remember those?).  It's usually accompanied by difficulty focusing, like ADD, which ranges from mild to horrible.  Sometimes it feels like one extended slow motion brain zap.  But it's all day long this tingly feeling which gets better and worse throughout the day.

 

Would you call this buzzing? An electrical buzz?

 

Why do you think the imipramine is making your brain ring?  I just feel like I have had this brain ringing since I reinstated.  It seems to be getting worse but not sure.  I do remember that when I was taking imipramine at a therapeutic dose, I complained of tinnitus to my Pdoc at the time.  I do know that if i increase the dose even slightly, I feel like my brain is in a vise (one day I wrote that my brain felt like an Instant Pot).

 

Is this ringing in your brain or in your ears (tinnitus) or both?

 

How often do you have the leg itching in the afternoon? When did that start?  It's not a skin itching but like a buzzy, deep muscle itching.  I am not sure when it started.  Maybe in the past month or so?  Actually I just looked at my notes and I have had intermittent itchy aching all along.  I think it might be made worse by melatonin or benadryl but I am not 100% sure.

 

If it's not actually itching, let's call it buzzing or aching or something else. Itching is a term only for itching; buzzing is very different from itching.

 

Is it itching or buzzing-aching?

 

Are the sensations in your legs like electrical current or are they muscle spasms or cramps?  Electrical current.  It's not spasms.  I do have benign fasciculations in my legs/feet which are

 non-painful twitches and they sometimes go all the way down to the sole of my foot.  The pain sometimes feels like a cramp, esp in my sciatic/glutes.  But more often it's a feeling like my leg(s) are literally plugged into a low voltage electrical socket.  The pain and discomfort reminds me of times I've accidentally buzzed my fingers and gotten electrocuted while plugging something in.

 

Is this connected to the buzzing-aching we talked about above or is it different?

 

Strongly recommend doing leg and foot stretches, you may be sitting too much. This makes you more susceptible to these kinds of muscle symptoms.

 

How did you take Trileptal? Which of your doctors prescribed it?  I had 150 mg tablets and I quartered them and then weighed them on a gram scale and shaved off bits to make sure they were consistent.  My psychiatrist prescribed it.  He said it would be like putting fire retardant on a fire.  I definitely noticed that if I increased the Trileptal dose a tiny bit, it made my "morning sickness" worse.

 

How long have you been taking Klonopin every day? I see you take it at various times and dosages. What effect does it have on you?  Before WD, I used to take it PRN to sleep, but since going through WD last fall I was really trying to avoid it.  I looked back at my notes and it looks like I started taking again it when I started feeling really crappy at the end of January.  It makes me sleepy and knocks me out.  If I have really bad morning sickness at 3am it helps me get back to sleep for a few hours.  Or if I'm in a lot of pain at night feeling wired, it helps me fall asleep.

 

About how often have you taken Klonopin in the last month? Att @Shep

 

It's extremely important that you keep notes of your benzo usage -- times of day and dosage every time you take it. It may be influencing your symptoms.

 

What is your sleep pattern?  I was always a good sleeper (before this whole mess).  Lately I fall asleep Ok but sometimes need to take something.  I try to go to bed at 10:30 or 11 and I sleep well, until I wake up at 2 or 3 or 4 or 5.  I was having a great stretch back in December when I was sleeping all the way until 6am.  It seems lately I feel sleepy in the afternoon, but if I lie down in the afternoon for a nap, I pass out and can barely rouse myself up at all.

 

If you sleep in the afternoon, you don't sleep as well at night? That makes sense.

 

Thank you so much.  

 

On 3/4/2020 at 5:33 AM, LaurafromCT said:

 

I feel dumb. I didn't realize that you were suggesting that I might be experiencing withdrawal from the Trileptal. I thought you meant I should just give it another go.  Anyway I woke up this morning feeling extremely itchy and based on your questions I realized what you meant. I took a shard of Trileptal this morning and I think the itchy feeling is a lot better. 

 

I would still appreciate your thoughts on switching to Lexapro or another SSRI. I was thinking that maybe I could start taking Lexapro at a homeopathic dose to start... super diluted. Idk. 

 

Thank you. 

 

Well, there you are. You had Trileptal withdrawal. Get the liquid form from your doctor, see Tips for tapering off oxcarbazepine (Trileptal)

 

Please do not change more than one drug at a time. If taking a little Trileptal, such as 1mg, relieves your symptoms, you're set for a while. After you stabilize, you can taper off. Why do you want to take an SSRI?

 

To help us see better what's going on, please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. You can post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.

 

[LaurafromCT]

On 3/7/2020 at 9:05 PM, manymoretodays said:

Hi LaurafromCT,

When did you come off the Trileptal 37 mg?  At what dose?  Was it 37 or 37.5 mg?  Your signature notes 0.37 mg.  Is that correct??

 

What do you mean by morning sickness?  Are you pregnant or do you just mean nausea and ? vomiting. 

 

Good catch.  I was on 37 mg Trileptal not .37 my apologies

 

Definitely not pregnant LOL.  I just call it "morning sickness" because I wake up every morning feeling all kinds of sick.  It's like nausea but more intense, just an overall bad feeling, jumpy, shaky, ill, heart racing, can't lie down, etc.  I am not sure what else to call it.

[LaurafromCT]

14 hours ago, Altostrata said:

 

Please do not change more than one drug at a time. If taking a little Trileptal, such as 1mg, relieves your symptoms, you're set for a while. After you stabilize, you can taper off. Why do you want to take an SSRI?

 

 

Oops I took 20 mg for 3 days.  Went down to 10 mg yesterday, will see how it goes.  How would you proceed today?  Stay at 10 mg?

 

My thinking on the SSRI is that since I took SSRIs for over 20 years (Lexapro for 15 of those years) and I took imipramine (tricyclic) for only one year, that it was the SSRIs that molded my brain over 20+ years.  Therefore that's why the imipramine reinstatement is not working and why I am thinking that bridging to an SSRI would help me get better.  Please let me know what you think about this theory.

 

I will answer your other questions when I can, thank you.

[LaurafromCT]

On 3/7/2020 at 9:05 PM, manymoretodays said:

 

If you have syringes to measure and a mixing container, you could try mixing a solution from your pill/tablet with water. 

 

Are you on any other drugs/medications right now Laura?

 

 

I should add that I dissolved the Trileptal 150 mg in 150 ml of water and it dissolved very nicely so I have been measuring out of that with a syringe.

 

I am mainly just taking the imipramine microdose.

[Colonial]

I'm interested to see what Alto says on this, because it still seems to Me If Your in withdrawal From the drug you most recently took.

And if You didn't have WD from the Lexapo, retaking that drug woudn't seem to help the WD Symptoms from the drug Trileptal that's giving you the symptoms.

 

I'm still not convinced it has anything to do which drug you were on the longest that's going to give you relief if it didnt give you WD when you went off it,, but that its the most recent drug, that caused the issues.

It would seem to me IF it's Trileptal WD, adding BACK the Lexapro is not only not going to help, but then just give you another drug to have to WD from again later.

 

But it's an interesting discussion.

Interested to see what she thinks about what the longest drug in your system that you dont think gave you symptoms may or may not have anything to do with a secondary and later drug being a symptomatic issue.

 

It COULD be just the overall cocktail that pushed your body over the tipping point, since you said you thought the Celexa was giving you flu like reactions before You started the Trileptal.

 

BUT... You also  said you started the leg nerve issues right after the Prozac CT...

I still think your just suffering from too many drugs in so short a time...

 

Hope You have a better day! 🙂

 

 

 

 

[manymoretodays]

4 hours ago, LaurafromCT said:

I should add that I dissolved the Trileptal 150 mg in 150 ml of water and it dissolved very nicely so I have been measuring out of that with a syringe.

 

I am mainly just taking the imipramine microdose.

 

What dose of imipramine?  And for how long have you been taking this?

What dose of Trileptal now?

Are you dosing these at regular times, each day?

 

You might have reinstated the Trileptal a bit high LaurafromCT.  I will give you the link to peruse.  And I wonder if you are having side effects of it.  We usually suggest really small dose reinstatements, and in hopes that they will offset WDsymptoms.......NOT as a way of remedication for some diagnonsense or other.

 

About reinstating and stabilizing to reduce withdrawal symptoms

According to what medicine knows about psychiatric drug withdrawal syndrome, reinstatement is the only way to alleviate withdrawal symptoms. All the papers about withdrawal symptoms allude to how symptoms usually resolve after reinstatement. This is considered a hallmark of withdrawal syndrome.

 

I think you may have posted some daily notes here now.

Would you do some more please, and then just post 24 hours of, right here, on your introduction page.  That will help us and you quite a bit, to see how each drug is affecting you, and your symptoms now.

 

Okay, thanks for answering questions and all.....

 

L, P, H, and G,

mmt

 

[LaurafromCT]

@Colonial I should claify an important note: everything I took gave me flu-like symptoms over time.  Lexapro, celexa, AND imipramine.  I stopped taking the imipramine because I got the same flu-like symptoms I was experiencing on the SSRIs. For some reason I am not experiencing flu-like symptoms on the microdose.  Yet.

 

The Trileptal issues I am having now are almost a side issue.  The main issue is that I am 5 months into reinstatement at a pretty consistent dose and my leg pain is not improving.  Actually it got a bit worse.  Here is a bird's eye view:

 

September (End of)	reinstated micro dose imipramine
October	legs felt slightly better (20%) started trileptal
November	legs felt slightly better (15%)
December	Legs felt slightly better? (10%)
Early January	Feeling the same, legs maybe a bit better
January 16th	started feeling much worse - leg pain, flu-like symptoms.  No idea why.
Jan 29th	discontinue trileptal
February	Legs about the same. Maybe a bit worse.

 

Ultimately I want to get to where I can walk again and I don't think that staying on imipramine is going to get me there.  I have had wicked electrical-feeling side effects the whole time I have been on it.

 

I still don't know why I started feeling so bad mid-January.  I did start feeling better after I stopped the Trileptal so maybe I was taking too much of it.

[LaurafromCT]

1 hour ago, manymoretodays said:

 

What dose of imipramine?  And for how long have you been taking this?

What dose of Trileptal now?

Are you dosing these at regular times, each day?

 

 

 I am still at 0.034 mg imipramine.  Sorry I thought that was in my signature.  I have been taking approximately that dose since September

 

Today I took 10 mg Trileptal.  yes at regular times each day.  I will post my last week's doses.

[LaurafromCT]

Here is my last week's tracker:  Month of February is here:  https://docs.google.com/document/d/1xvUJxyzXz8J54UyV4pTN_N4t9BEf-AnHUj1xnQM7K6A/edit?usp=sharing

 

Imip = imipramine

IB = ibuprofen 200 mg 

T = Tylenol 500mg

Alka = alka selzer (aspirin (325 mg) + sodium bicarbonate (1.9 g) + citric acid (1 g)

Melatonin = 1 mg tablet

Klon = Klonopin 0.5 mg

caffeine pill = vivarin (combats shaky shivery feeling -- totally helps) 100 mg = 1/2 cup coffee

 

Date:     March  1                               Day of week:  Sunday

 

Overall notes for day:  A bad day. Brain so tingly and legs too. I could barely think straight

 

Morning Sickness score:  2                            Total Tylenol: 2

 

Time      Symptoms          Drugs Taken

5:00 AM               Wake up, sick – 3             Alka, caff 100 mg

6:00 AM               Legs vibrating   

7:00 AM               Brain a little zappy           Imip – 0.036

11:00 AM            Brain ringing, zappy, all morning can hardly think, legs achy -2, stingy, pins and needles  

2:00 PM               Nap, legs hurt, brain ringing really bad, all day legs zingy

7:00 PM               Legs achy            

9:00 PM               Legs crampy       2 T

11:00 PM             bath, sleep         

 

 

Date:     March  2                               Day of week:  Monday

 

Overall notes for day: Very painful day

 

Morning Sickness score:   4-5                                       Total Tylenol: 7 + 3 IBP

 

Time      Symptoms          Drugs Taken

4:00 AM               Wake, Hot and shaky      ½ mel

5:00 AM               Wake up itchy, hot shower

5:45                        heart pounding, shaky   1 T

5:45                        caff 100 mg

6:00 AM               Brain zappy, legs twitching          

7:00 AM               Legs very unc, weak / floppy, very prickly

7:30 - bath          Imip – 0.035       

10:00 AM            Feel bad, weak / floppy, legs very prickly, very uncomfortable     2 T

10:00  Worked 10 - 2     

2:00 PM               Achy, sour pain, headache all over body                 2 T

3:00 PM               Nap – passed out 1.5 hours        

7:00 PM               Pain - bath          2 T

9:00 PM               Still in pain          3 IB / Fish Oil

11:00 PM             Sleep    

 

 

Date:     March  3                               Day of week:  Tuesday

 

Overall notes for day: Very painful day

 

Morning Sickness score:  4-5                                        Total Tylenol: 4 and 4 IBP

 

Time      Symptoms          Drugs Taken

2:00 AM               Wake up – hot, pain – 2, brain glittery, shaky      

2:45        take ¼ klon and alka

3:00 AM               Shivery, Bath

3:15                        sleep    

5:45        wake up, itchy / shivery / prickly                100 caff

6:10        Feel sick              

7:00 AM               Still feel sick, legs stingy                Imip – 0.036

10:00 AM            Brain ringing, legs very prickly, ADD – can barely focus   

1:00 PM               I can barely think, brain ringing , BATH   

3:00 PM               Achy      2 T

5:00 PM               ringing is better, legs itchy           

6:00 PM               feel itchy / owie               

7:00 PM               A LOT of PAIN, Whole body headache, Brain zappy            2 T

9:00 PM               Still in pain          4 IBP

10:00 PM             Passed out on couch      

12:00 AM            1 AM – go upstairs to bed            ½ Mel

 

 

Date:     March  4                               Day of week:  Wednesday

 

Overall notes for day: In bed most of the day.  1^st day of Trileptal reinstatement

 

Morning Sickness score:  4                                                            Total Tylenol: 4

 

Time      Symptoms          Drugs Taken

4:40 – Wake, achy            1 T

5:15 – Shaky, Itchy, Bath               1 T  and ¼ klon

6:00 AM               Feel bad

6:30 – Shivery    21 mg Trileptal  100 Caff

7:00 AM               Legs twitchy / zappy, Itchiness feels better, Shaky             Imip – 0.035

8:00 AM               Slept 7:30 - 10   

10:00 AM            A bit itchy, buzzy             

1:00 PM               A bit itchy, buzzy, Brain tingling a bit       

2:00 PM               Can’t think great              

4:00 PM               Nap       

6:00 PM               Legs a bit achy, brain very zappy, braining RINGING, High pitched,

6:30 pm                Legs very electrical, vibrating, stingy, can barely think, sour itchy pain feeling, buzzing     

9:00 PM               Very electrical, Sour feeling         2 T

11:00 PM             Ears ringing, sleep          

 

 

Date:     March  5                               Day of week:  Thursday

 

Overall notes for day: Not very painful but zappy. In bed most of the day

 

Morning Sickness score:  3                                            Total Tylenol: 1

 

Time      Symptoms          Drugs Taken

4:20        Wake up, Shaky, back to sleep  

5:40       Intense bad feeling, get up

5:50       A bit shivery       1 T   100 caff

6:45        I actually feel pretty good            

7:00        Brain glittery, Legs buzzy              Imip – 0.035

9:00 AM               Brain glittery     

10:00 AM            15mg Trileptal

11:00 AM            Brain zaps, legs tingling/zappy   

1:00 PM               Can barely think, Brain tingly      

3:00 PM               Brain tingly, Legs very electrical, very tingly         

7:00 PM               Vey electrical, zappy body/legs  3 mg Trileptal

11:00 PM             SO ELECTRICAL, sour, achy – 4, Bath

11:45 - sleep     

 

Date:     March  6                               Day of week:  Friday

 

Overall notes for day: In bed all day – felt pretty bad all day

 

Morning Sickness score:  2                                                            Total Tylenol: 5 + 3 IB

 

Time      Symptoms          Drugs Taken

4:20        Wake

4:30        back to sleep ?  1 T

6:20       A bit shaky/shivery, a bit agitated

6:40        weirdly cheerful, mind racing      100 caff

7:00 AM               A bit stingy, floppy, Bath               Imip – 0.035

8:00 AM               Legs suddenly painful – 6              20 mg Trileptal

10:00 AM            Still achy, electrical current         

1:00 PM               Legs weak BAD Broken glass feeling – 7, Hard to walk, not hungry, ow all over      2 T

6:00 PM               Brain zappy, tight, numb              

7:00 PM               Pain very bad, discomfort 7-8      2 T

9:00 PM               9:30 – still feel bad, very prickly, getting sleepy  3 IB

10:00 PM             Brain RINGING with electricity

10:30 - sleep     

 

 

Date:     March  7                               Day of week:  Saturday

 

Overall notes for day: In bed most of the day, had a hard time walking up the stairs – pulled myself up using the banister

 

Morning Sickness score:  1                                            Total Tylenol: 4 + 3 IB

 

Time      Symptoms          Drugs Taken

4:30                       Wake, back to sleep       

6:00 AM               Wake NOT sick, legs tingling, Brain very glittery 

7:00 AM               Imip – 0.035, Trileptal 20 mg

9:00 AM               Legs zappy, trembling, Brain less glittery, Bath   

1:00 PM               Legs very itchy, electrical, prickly, very uncomfortable, Can hardly think  2 T

3:00 PM               Nap 1.5 hours   

5:00 PM               Feel itchy, bad, Itchy brain           

7:00 PM               Feel very buzzy, itchy, Legs very uncomfortable, Very hard to walk/think 2 T

9:00 PM               9:30 – Still feel bad          3 IB

10:00 PM             10:30 VERY BAD PAIN, Very uncomfortable, Brain ringing, Bath