SelmaLady: How do I do this?

[luv2knit]

Oh no... I wish I had some advice for you on this, but I do not. Is there a mod who could perhaps help with this?

 

Continuing to pray for healing and peace.

[SelmaLady]

No mod has visited for quite awhile and I don't know what they would say.  Since I am not withdrawing anything, there's nothing to reinstate.  Thank you for prayer.  Oh God help me.

[Broken]

God help us all! I'm fed up feeling like I'm crazy, this is not my fault yet I'm the face of all the upset that the medication ultimately caused.

 

I'm the one left trying to pick up the pieces. People don't see the chain of events and the medication that damaged our health, it's not tangible. However they do see an individual which can no longer function in society, they associate their hurt with that individual because they're (through no fault of their own) causing the disruption and are therfore the root of the problem.

 

My condition us the byproduct of unsafe medication, substandard health care and malpractice.

 

See me not my "illness". I don't like the term illness for the hell we're dealing with because true illness can't be avoided but our condition absolutely could have and should have without question.

[Broken]

Ironically the practitioner's that helped destroy are lives are the most likely to think we're just mentally unstable.

 

How can we resolve this? Hmmmm....

 

Take this SSRI in the morning, this SNRI just before bed, this anti-psychotic midday and this xanax three times a day indefinitely.

 

See you in 3 months for a dose of ECT and a lobotomy when that doesn't work.

 

#notamused

[Broken]

Hang in there SL if only out of spite! Anger can be incredibly useful when applied effectively.

 

Forgive them but don't forget.

[Fresh]

Hi SL , I'm so sorry that you're having such a rough time.

If you're able to , could you update your signature please.  There must be more to add since 2013 , and everyone reading this just wants to be able to offer something constructive.

As impossible as it seems , you actually ARE enduring it . . . so bravo to you.

You have lots of people praying for you , and I believe there IS a bigger picture.

Hugs   ,     Fresh

[Fresh]

I just read your very first post from 30 Dec.  2014.      You were taking Zoloft 25mg. then.    Have you stopped it in the past 4 weeks?    Or changed the dose?

 

You write "Since I am not withdrawing anything , there's nothing to reinstate"   but that's not true.

[WiggleIt]

One day at a time and by clinging to God

[SelmaLady]

I just read your very first post from 30 Dec.  2014.      You were taking Zoloft 25mg. then.    Have you stopped it in the past 4 weeks?    Or changed the dose?

 

You write "Since I am not withdrawing anything , there's nothing to reinstate"   but that's not true.

I have tried many times to change my signature but the system won't allow more than what I have up there --- If I try to add more I get an "OOPS!" screen.  I've tried all different kinds of ways...I had a mod say they would post for me but I can't think enough to tell her what to put up there.

 

Right now I am taking 25mgs of Zoloft which I have been taking since 1988 continuously, never ever attempted to get off as I had no problems with it.  I used the Afrin in Feb of 2013 and that torched my CNS leaving me with unremitting extreme akathisia and increasing the protracted DR/DP to extreme visual distortions including intense color perceptions and feelings as though I were sitting in a hole.  My DP also increased so that I felt less and less of myself.  I went to the ER and was given an rx for 10mg Valium.  I took one, it got rid of the akathisia but did nothing else.  I was despondent and ended up overdosing on the rest of the Valium rx.  I was hospitalized and was given in addition to the 25mg Zoloft, 50mg Doxepin and 2mg Clonodine.  I tried to liquid taper the Doxepin---got to 49.6 when I went into a huge increase in akathisia and feelings of insanity.  The akathisia had gone away completely after the overdose until I had to take penicillin for a gum infection.  Then it came back along with the ever increasing loss of visual space and loss of the feelings of sanity.  I am still here only because I don't want to hurt my family. 

[Meimeiquest]

In Fresh's signature she mentions Dr. Lucire in Australia. Maybe your husband could check out her website, noted in Fresh's signature above. Muddles, in England, was able to connect with her somehow and posted a utube video about extreme reactions to antidepressants. She might be able to give you some guidance as to what drug would best be eliminated first.

[SelmaLady]

One day at a time and by clinging to God

Yes.   Cling to God. 

[Fresh]

Brilliant idea meimei

[SelmaLady]

In Fresh's signature she mentions Dr. Lucire in Australia. Maybe your husband could check out her website, noted in Fresh's signature above. Muddles, in England, was able to connect with her somehow and posted a utube video about extreme reactions to antidepressants. She might be able to give you some guidance as to what drug would best be eliminated first.

Per Alto, I should taper the Doxepin first as this is having horrific interactions with the Zoloft and the Clonodine. 

[Muddles]

I personally think Doxepin is your problem. I can't read through all of your posts but are you coming down off the Doxepin? Dr lucire does not really know much about withdrawal to be honest. Not sure what to advise here. What happens when you reduce the Doxepin?

[Muddles]

A lot of people have reactions to liquid. Have you tried cutting down with using scales?

[SelmaLady]

I personally think Doxepin is your problem. I can't read through all of your posts but are you coming down off the Doxepin? Dr lucire does not really know much about withdrawal to be honest. Not sure what to advise here. What happens when you reduce the Doxepin?Th

Thank you for your post. 

 

My daughter who has been researching this for 2 years believes too that Doxepin is causing the brain to stay in a chemical upheaval -- I don't know.  Before I had to take the penicillin last Jan, I was taking the Doxepin, Zoloft and Clonodine and yet making good progress in recovery.  Then, after the penicillin, my whole brain went into an escalating chaos, including the every encroaching visual and emotional distortions.  I have had DR/DP since my first c/t with Valium in 1981 and this extreme is hitting in that area of my brain. 

 

I really feel that for complete info on drugs and withdrawal, all the info that's available is right here with Alto's site.  She feels its the combo of drugs that is keeping me getting worse.  I'm trying to micro taper the Doxepin, but have gone into this unbearable place since trying to get over to liquid.  I had taper to 49.6 and had to stop.  I tried to s/w Alto by my tag to her here and I also tried to pm her, but she said she can't pm with me personally.  All I can do is to hold I guess until the akathisia settles down again.  I am sleeping through the nite now so that's an improvement.  So terrified.

[Muddles]

It's difficult to know what to say. I got sick on the drug and came off over 9 months...felt no different coming down at all. Ditched it at 5mg but wished I hadnt really. I suppose what I am trying to say is that it is a difficult position to be in when we are sick on the drugs. I had an adverse reaction to a flu medicine a couple of years ago whilst on mirtazapine - I believe I went into poop-out then as I suffered many weird side effects after that and was never right. (Never right all the time I was on it though).

 

I would give it a couple of weeks and then look into cutting down using scales if you can.

[Wildflower0214]

Liquid was a disaster for me. Anyone already reacting to a drug should NOT switch to liquid in my opinion. Liquid hits harder and stronger, like a freight train. So, if someone is having a bad reaction already, switching to liquid is most likey going to exaggerate the problem. I wish I would have known before I did it.

[SelmaLady]

A lot of people have reactions to liquid. Have you tried cutting down with using scales?

See, here's another time when if I had known then what I know now......I'm tapering 1/2 liquid and 1/2 powder in capsule  We have a scale and my husband is meticulous in weighing out the powder.  I had started to shave a teeny bit of the Zoloft off the tab too, but was told not to taper more than one at a time so, I'm down a teeny amount in the Zoloft tho not enough to make much difference (or maybe it did??).  

 

When you got sick on the mirtazapine, did you have a reaction to it after taking it or just any overall sickness?  What did you experience? 

 

I think you're right in giving this another few weeks and then starting up with the micro taper again.  Thank you SO much for helping me.  I am an anomaly with my drug history (Afrin reaction) and my DR/DP paws.  But I am like someone who c/t'd am SSRI/TCA in that my brain has become extremely dysregulated.  I have to believe that in time, it will find a way to come back closer in balance.  I just don't know where the Zoloft particularly, fits into all this...

 

I read your thread all the time and am always rooting (and praying) for you and know that you are going to come out just fine.

[SelmaLady]

Liquid was a disaster for me. Anyone already reacting to a drug should NOT switch to liquid in my opinion. Liquid hits harder and stronger, like a freight train. So, if someone is having a bad reaction already, switching to liquid is most likey going to exaggerate the problem. I wish I would have known before I did it.

I know.  I'm so sorry---for both of us.  I was told (not here) that it would just be an "uptick" to transfer over to the liquid and not that if you're really symptomatic, and/or really sensitive, to maybe not try that.  The liquid is touted as the very best and I think that may be true.  But it IS possible to taper slowly with capsules/tabs.   I reacted as though I had either cut a huge amount of upped the dose a huge amount.  I know you have to hold now to wait for an evening off of the symptoms too.  With me, it never ever evens off since the penicillin, so I just have to hope that I don't cut too fast --

 

Are you seeing any calming down yet?  May take a bit but you were showing some good stability before the liquid so you can get back there, I'm sure.

Am praying as always.

[Wildflower0214]

 

 

Liquid was a disaster for me. Anyone already reacting to a drug should NOT switch to liquid in my opinion. Liquid hits harder and stronger, like a freight train. So, if someone is having a bad reaction already, switching to liquid is most likey going to exaggerate the problem. I wish I would have known before I did it.

I know. I'm so sorry---for both of us. I was told (not here) that it would just be an "uptick" to transfer over to the liquid and not that if you're really symptomatic, and/or really sensitive, to maybe not try that. The liquid is touted as the very best and I think that may be true. But it IS possible to taper slowly with capsules/tabs. I reacted as though I had either cut a huge amount of upped the dose a huge amount. I know you have to hold now to wait for an evening off of the symptoms too. With me, it never ever evens off since the penicillin, so I just have to hope that I don't cut too fast --

 

Are you seeing any calming down yet? May take a bit but you were showing some good stability before the liquid so you can get back there, I'm sure.

Am praying as always.

Yes, I was told the same thing....Not accurate information. Umm, I have balanced a bit, but I'm still not returned to the baseline I had before, which really upsets me. But, not much to do but wait.

 

I know the feeling, people kept telling me to wait to taper until I was stable, problem was, I wasn't ever stable!! I'm praying for you. And yes, capsules are a very very good option for people like us.

 

I wonder what happened with the Afrin? Were you already destabalized when this happened?

[SelmaLady]

 

 

Liquid was a disaster for me. Anyone already reacting to a drug should NOT switch to liquid in my opinion. Liquid hits harder and stronger, like a freight train. So, if someone is having a bad reaction already, switching to liquid is most likey going to exaggerate the problem. I wish I would have known before I did it.

I know. I'm so sorry---for both of us. I was told (not here) that it would just be an "uptick" to transfer over to the liquid and not that if you're really symptomatic, and/or really sensitive, to maybe not try that. The liquid is touted as the very best and I think that may be true. But it IS possible to taper slowly with capsules/tabs. I reacted as though I had either cut a huge amount of upped the dose a huge amount. I know you have to hold now to wait for an evening off of the symptoms too. With me, it never ever evens off since the penicillin, so I just have to hope that I don't cut too fast --

 

Are you seeing any calming down yet? May take a bit but you were showing some good stability before the liquid so you can get back there, I'm sure.

Am praying as always.

Yes, I was told the same thing....Not accurate information. Umm, I have balanced a bit, but I'm still not returned to the baseline I had before, which really upsets me. But, not much to do but wait.

 

I know the feeling, people kept telling me to wait to taper until I was stable, problem was, I wasn't ever stable!! I'm praying for you. And yes, capsules are a very very good option for people like us.

 

I wonder what happened with the Afrin? Were you already destabalized when this happened?

 

When I took the Afrin I was just fine.  I still had the DR/DP left over but I was completely stable and continuing to improve as I always have. 

 

After the first w/d, after 4 years I began to get better and I just kept getting better for the next 18 years!  My memory kept improving, my cognitive kept getting better, my feelings kept deepening after having been at -0- for 5 years.  I ate anything, no sensitivities whatsoever.  The DR/DP was continuing to lighten.  But I stupidly took Xanax, not knowing it would send me back to w/d---but even then, after I had slow tapered off a Valium crossover, I returned back to my baseline in 18 mths and was continuing on getting better and better.  I had surgeries with sedatives, cortizone shots, all kinds of OTC meds.  I was using the Afrin because I thot it would be less of a stress on my CNS than capsules, etc.  I had been using if for YEARS w/o any problems.  But I think I pushed it up my nose too far and I had been really sick and stressed and that can thin out the membranes in the nose, so it went right into my brain.  HOW MANY TIMES have I gone over and over and over that, trying to go back in time to NOT use that things.  I wasn't all that stuffed up which might have been why it got into my CNS.  So unnecessary.   And then the penicillin last year just sealed the deal with what I am going through now.  Have to let that go.

 

Yes.  It's so hard to feel confident in cuts when you never EVER stabilize or like me, keep getting worse.  I do so understand the need of the brain to remain stable.  But like you, I'm taking something that is most likely contributing to the instability.  So I have a couple of markers:  akathisia and bad sleep, as being my signs that my brain is way over upset.  When those settle back, I'll just have to keep cutting.  I don't know what else to do.  Don't you wish that you had this info when you were without symptoms and could do it right?  I do have to say tho, that I was very symptomatic and unstable when I did a Valium taper in 2003.  I was very very slow and careful, but usually waited only 3 weeks, sometimes 4, to make a tiny cut.  It took me 2 years to get off of 12mg because I slowed it waaaaaaaaaaay down at the end and I think that's what helped.  I actually felt pretty good the last 6 months of the taper.  So maybe it won't matter all that much if we go ahead and taper while unstable as long as we go slowly and watch to be sure we're not taking on any new symptoms.  Or really severe. 

 

Have your "manic" thoughts subsided some yet?  And I know you struggle with insomnia, how's that?  I really do believe that you are going to be really good in recovery, especially once you get off.  But oh, we are so weary with this struggle.  Prayers.

[Muddles]

 

 

A lot of people have reactions to liquid. Have you tried cutting down with using scales?

See, here's another time when if I had known then what I know now......I'm tapering 1/2 liquid and 1/2 powder in capsule We have a scale and my husband is meticulous in weighing out the powder. I had started to shave a teeny bit of the Zoloft off the tab too, but was told not to taper more than one at a time so, I'm down a teeny amount in the Zoloft tho not enough to make much difference (or maybe it did??).

 

When you got sick on the mirtazapine, did you have a reaction to it after taking it or just any overall sickness? What did you experience?

 

I think you're right in giving this another few weeks and then starting up with the micro taper again. Thank you SO much for helping me. I am an anomaly with my drug history (Afrin reaction) and my DR/DP paws. But I am like someone who c/t'd am SSRI/TCA in that my brain has become extremely dysregulated. I have to believe that in time, it will find a way to come back closer in balance. I just don't know where the Zoloft particularly, fits into all this...

 

I read your thread all the time and am always rooting (and praying) for you and know that you are going to come out just fine.

I was sick on mirtazapine on and off from the start but couldn't get off it. When I hit poop-out I went completely emotionally numb at first - my dads death pushed this to happen. Then I started getting withdrawal symptoms - akathisia, twitching, delirium, depression etc. I started tapering but I never stabilised - my body was rejecting the drug and it was making me really ill. I got to the point where I didn't know what the hell I was doing - couldn't even get to the doctors to get a script so just stopped at 5mg. I should have tapered further but honestly couldn't look after myself in any way...very bad way. When I came off things changed - I did start to see things pick up. I am not sure if tapering down to 0mg would have made any difference to me tbh; I'll never know. But one thing we all know not to do on here is cold turkey - even if the drug is against us, especially if we have been on it for a long time.

 

Honestly, I feel so bad at not knowing what to tell you or help you. Maybe you have hit poop-out??? I just don't know?? But one thing is clear - the drugs are not helping are they?!!

 

I just hope that you see some changes soon...just try and hold on for a couple of weeks and go from there.

 

Do you feel worse after dosing?

[Muddles]

I am being really thick here - please forgive me...I am on my phone and struggle to read back at posts and take all of the info in - my brain doesn't work well at the min.

 

Did you start taking Doxepin after the bad reaction to the antibiotics or were you already on it?

[Muddles]

I've read through your posts and it's no wonder you feel so confused as to what to do!

You don't need to answer the above question - I bet you're sick of going over that.

Are you in America?

[luv2knit]

Ugh... Yes, cold turkey... Not quite but almost. I believe I have seen my "taper" referred to as a cold turkey taper. When you compare your symptoms to cold turkey off an SSRI, I believe it, Selma. I think your symptoms are the closest to mine of anyone's. Some definite differences, but more similarities than with anyone else, I believe. Really hope you can get this worked out!!

[SelmaLady]

I've read through your posts and it's no wonder you feel so confused as to what to do!

You don't need to answer the above question - I bet you're sick of going over that.

Are you in America?

I have such a long convoluted relationship with chemicals in my brain that I really don't expect anyone to absorb all of it (or really care).  When I went to the psych hospital after the Valium overdose, I tried to give my history to the psychiatrist---I got the deer in the headlights after just a couple of facts.  Besides, Protracted Acute Withdrawal form 5mg of Valium??? Nope, can't happen.  So I got a dx of "Multiple Personality Disorders"--ie tons of neuroses.  I just get used to repeating my history tho, because it is all intertwined, I feel like I have to give it ALL or there's no real understanding of what has happened to me

 

Yes, I'm in Selma Oregon USA (on the West Coast). 

 

I don't feel worse after either the Zoloft or the Doxepin.  That is, I feel bad all the time but I don't have a spike in akathisia or insomnia or any other sign that I'm paradoxical.  But I guess somehow the drugs together are keeping my brain ramped up and in chaos.   

[SelmaLady]

Ugh... Yes, cold turkey... Not quite but almost. I believe I have seen my "taper" referred to as a cold turkey taper. When you compare your symptoms to cold turkey off an SSRI, I believe it, Selma. I think your symptoms are the closest to mine of anyone's. Some definite differences, but more similarities than with anyone else, I believe. Really hope you can get this worked out!!

Yes.  I agree.  But where does that leave me?  I can't just jump off.  I'll have to do an incremental taper or I will have a horrendous w/d.  I just have to hope that I can endure the escalating symptoms from a brain that is super toxic.  And I think its because we both have been exposed to Zoloft for over 20 years.  Zoloft is notorious for akathisia.  Not that others aren't , but I think this drug really has propensity for that.  When I was trying to taper off of Valium in 2003, my husband was afraid that I would get depressed and asked the doc to up my Zoloft, which he did-----my first experience with akathisia---tapered it back down in three weeks and was ok after that.  But that was what I got so badly with Afrin hit---akathisia.  I have always felt that the Afrin affected the Zoloft and sent me into w/d's...  I am so looking forward to a taper of these drugs. 

[luv2knit]

I'm sure, SL. Like you said, you can't just drop off. There are many meds that cause akathisia--not just withdrawal. I have been meaning to see if Afrin is one of them, if I can get my brain to work well enough to do the research. The list includes antibiotics, reglan, compazine, AD's (aside from WD), and many others.

[Muddles]

I wonder if there are any knowledgable doctors you could see there?

 

Just know we are thinking of you. Honestly, it will get better at some point...but the awful thing is just not knowing when. Will pray for you.

[SelmaLady]

I did lots of research on oxymetazoline (the active ingredient in Afrin).  It is a huge brain stimulator by binding to receptor sites that excite the brain (no receptors that psych drugs bind with tho).  I couldn't find any evidence that it causes akathisia, but I may have missed it.  It can cause as I said, a temporary up reg but that is usually resolved quickly.  One girl I read about had anxiety for 6 months after a reaction to it.  Some people get hallucinations from it but again, it resolves quickly.  There are people who use it continually, several times a day for years---honest.  One lady began having thunderclap headaches from it and when the did an MRI, they found enlarged veins in her brain---but even that resolved over a few months of getting off of it.  So I just have to believe it affected the Zoloft in some way...  But I always want to warn people that nasal sprays are powerful chemicals.  And anything that goes up your nose it never a good idea...

[SelmaLady]

I wonder if there are any knowledgable doctors you could see there?

 

Just know we are thinking of you. Honestly, it will get better at some point...but the awful thing is just not knowing when. Will pray for you.

I live in the boonies of the Oregon woods.  Although, when I went to an ER in one of our larger cities, the intake nurse and the ER doc were interested in my PAWS and used that as a dx!  But the Nurse Practitioner that I see has NO idea what is wrong with me nor do I discuss it with her.  I go there to get my meds and if she thot there was anything really wrong with me, I'd be scurried over to a neurologist for expensive tests that would show nothing and he would want to c/t me off the meds.   How I wish there really was a doctor who got this..  But then again, what difference would it make? 

 

Thank you so much for your help here and your prayers.  ((Hugs))  I am praying for you also and so many here.

[luv2knit]

SL--I assumed you had looked into it, but was definitely curious... I know you can and will get over this. Just wish there was an easy fix!!

[SelmaLady]

SL--I assumed you had looked into it, but was definitely curious... I know you can and will get over this. Just wish there was an easy fix!!

Me too.  Thank you so much for the encouragement.   We'll get there in God's timing,  xoxo

[luv2knit]

Absolutely!

[WiggleIt]

Selma, I know things are super tough right now, but you are really brave and you are going to pull through this.