kcs72: Doctor cold turkey

[KarenB]

To search things on this forum, use google and type 'SurvivingAntidepressants burning mouth' (or whatever thing you are wanting to find).

[kcs72]

Thanks to all who offered responses; these symptoms are just unlivable. I feel like I won't make it; the burning/poisoned tasting tongue is among the worst. I'm going to have to research coping skills for this because it is truly trying me to my core..

[bubble]

I will google surviving antideptessants burning tongue. I'm sure we have it covered.

 

I quickly read through your thread and if I understood it well you you came here after CTing Lexapro. You didn't decide to reinstate a very small dose as advised but went to hospital where you were put on more drugs at higher doses which you also CTed later.

 

I will consult with other mods to see what can we suggest at this point.

 

What is your thinking? Unfortunately there are no quick fixed. One of the problems I could identify from your thread is not giving things enough time and looking for quick solutions.

 

What is your symptom pattern at the moment? Do you have any however brief periods when you are feeling at least slightly better and a bit calmer?

 

Hang in there. We will think of something.

[scallywag]

1 hour ago, bubble said:

I will google surviving antideptessants burning tongue. I'm sure we have it covered.

 

My quick search of the site found this topic: Burning Mouth Syndrome.

[bubble]

Thanks a lot Scally!

[Shep]

 

Hi, kcs. 

 

I saw your post over on the benzo forum, but as Bubble wrote, it's best to keep your information here, as you are not actively tapering a benzo and you will get more responses here.

 

On 2/24/2017 at 8:19 PM, kcs72 said:

I was discharged on 40mg Prozac, 1mg Ativan, 10mg Propranol three times/day, Vitamin B12 and D as well as methylfolate to help with the prozac’s absorption.

 

I quoted the above from one of your earlier posts from back in February. Since burning tongue can be from vitamin B12 deficiency, did you also discontinue the B12 and methylfolate supplements? 

 

While some people can be overly stimulated by adding B12 supplements, I'm wondering if perhaps removing it may have made this symptom worse if it was helping with a deficiency. 

 

Please list any supplements you are using, in case this may be part of the problem. 

Edited June 25, 2017 by Shep
fixed link

[kcs72]

Thank you. I did discontinue the supplements. I'm just in such a bad place mentally and physically; I honestly don't see surviving this. I have a 14 year old son depending on me and I'm non-functional...so sick

[Shep]

Kcs, 

 

Sorry, I'm a bit confused after re-reading your benzo forum thread. You came to SA after a cold turkey from Lexapro, and you were on the benzo forum wanting tapering advice for Klonopin in October of 2016, but then stopped posting over there until today. And in your post written today, located here, you mention being off Ativan and Prozac for 4 months. 

 

How long were you on Ativan and Prozac? Please give the start and stop date. And are you off all drugs and supplements now? 

 

Edit:  Please update your signature to include Ativan and Prozac, including the dates and the dosages. Here is a direct link to your signature:

 

Account Settings – Create or Edit a signature.

Edited June 25, 2017 by Shep
added link to signature

[bubble]

The way I understood it is Kcs was given advice to RI Lexapro. She decided not to and went to hospital where she was put on Prozac and Ativan. It seems that before that she went on with her plan to stop taking Klonopin.

 

As it was expected she didn't react to those well so she stopped taking them 4 months ago.

 

I hope she gives a short history as you asked because it isn't quite easy to get that from her posts and I'm not sure I got it right.

[Shep]

Thank you for that information, Bubble.

 

I'm sorry, Kcs, I see now on your main thread where you wrote about hospitalization back in February. 

 

I've asked the other mods for their opinions, but if a reinstatement is advised again, would you be willing to work with us on getting back on a small amount of a SSRI and doing a proper taper? 

 

This will require you to focus, answer questions, and to be able to work with a scale or to do a liquid titration. 

 

Let us know what you think. 

[kcs72]

I'm sorry. I'll try to be more clear..

[kcs72]

I am so desperate that I'm willing to do anything but I fear the meds never worked; that I couldn't properly metabolize them. The whole time on, I never felt any benefits. 

 

1) Rx'd Klonopin after a panic attack (1-2mg/day as needed); after a month's use, returned to doctor for help getting off benzo

2) He rx'd Lexapro 10mg (first pill-had hysterical crying); told to stop and I did

3) Freaked out and tried to come off Klonopin too fast; brought it down from 1mg/day to .5; brain thrown into dp/dr; thought I was nuts-went to a different doctor who knew my history with anxiety

4) She put me back on Lexapro b/c she knew I'd had success with it in the past; it never worked-made me sicker; had me take it to 40mg

5) Decided to leave that doctor b/c she didn't listen to me that I was so sick on that ssri; sought out a psychiatrist-all were booked; found a local psych assist and he rx'd Buspar 5mg, brought Lex down to 10mg, kept Klonopin .5; this failed to help either-only got sicker; he d/c'd the Lex; I ct'd the Buspar as it made tachycardia

6) Still so sick, decided to go to a hospital that was recommended by a counselor-thought I could get "Stable" and back to myself; They refused to believe this was caused by meds and referred to every symptom as "my illness"; took me off Klonopin and added Ativan .5 x2; added Prozac 40mg-so sick; dc'd home after 3 weeks

7) Hospital stay was in November of 2016; Still sick through months that followed; decided to go Natural route and sought Naturopath. She told me just to stop the Prozac...I had already ct'd the Ativan...

8) It's 4 months now and just getting progressively worse; agitated; hysterical crying, dp/dr.

[Altostrata]

Hello, kcs.

 

If you consistently post in this topic, you won't need to iterate your history each time you post.

 

It sounds to me like you have benzo withdrawal syndrome, aggravated by adverse reactions to Lexapro and possibly other drugs.

 

When you go on and off psychiatric drugs, your nervous system can become sensitized to all of them and react badly to "normal" doses.

 

Do you have the akathisia symptom at any particular time of day? Is it better or worse at any times? Do you still have tachycardia or other symptoms?

 

Please keep daily notes on paper about your symptoms, when you take drugs or supplements, and their dosages. This helps track adverse reactions.

[kcs72]

Thank you Altostrata...It's the most horrific thing I've ever experienced and pray to survive; not doing well at all...I have the akathisia most every day..can't tell if it decreases any during the day or not; I do sleep a full 8 hours though-my only relief. I have tachycardia but take Propranolol for it and it helps keep it down. I appreciate the feedback.

[kcs72]

Do you think I would risk worsening my condition if I went for an evaluation and more meds were prescribed? Is there a risk of kindling or cross tolerance? I'm so desperate; I really can't take this much longer....the burning tongue too is maddening

[bubble]

On ‎22‎.‎10‎.‎2016‎. at 1:53 AM, ChessieCat said:

Hi kcs,

 

If you do decide to go to hospital, they may increase your dosage/s, add another drug, CT you.  This is something that you need to consider.  Are you thinking clearly enough, or do have someone who could advocate on your behalf, to be able to assess what they might try and give you?

 

Other mods are more familiar with your situation so I will ask for their assistance.

If you read through your thread, you will see that most of your questions have already been answered.

 

This one is the answer to what happens if you go for an 'evaluation'.

Edited June 26, 2017 by bubble

[bubble]

On ‎25‎.‎2‎.‎2017‎. at 2:19 AM, kcs72 said:

 

During this time, I made several trips to the ER with tachycardia. The psych assistant told me to stop the Lexapro and I did. I stopped the Buspar on my own feeling it was contributing to my tachycardia. For the first time in my life, I contemplated going to a hospital. We found Menninger Clinic in Houston and I decided it would be worth it to go and get stable-anything to stop the crying. My mother had to take out money from my inheritance just so I could go. I stayed a total of three weeks in their CPAS unit where several tests were conducted.

 

I was discharged with what I believe to be a faulty dx: MDD; Anxiety D/O; Depersonalization Disorder. I agree that I am anxious but something else had caused the crazed mood I was experiencing and yet, I could get no one to listen. They all attributed it to “my illness” which ironically, I’d never had before the meds.

 

I was discharged on 40mg Prozac, 1mg Ativan, 10mg Propranol three times/day, Vitamin B12 and D as well as methylfolate to help with the prozac’s absorption. I returned home feeling much the same as I went in and further in debt. My crying spells would continue along with body tremors, dp/dr, apathy, agitation and fear.

 

This brings me to where I am today; unable to function, hold a job, finish school, parent my son, do things around the house. It is so important that I get well. I have a limited source of support. Most of my family have passed except for my mother. My mother, my son, and I all reside together and I worry if something happens to her, where will we be with me in this fix? One knows when something is not right with oneself and this has been the case for ten; almost eleven months. I have to get well so that I can resume my normal functioning pre-medication. 

 

I think you have already had plenty of opportunity to see how the doctor's advice just doesn't work. But each of us have our learning curves.

 

I can understand that taking advice from the internet over that from a professional medical professional feels strange but you have to make up your mind about that. After I've read through your thread it seems that you have disregarded all the advice and suggestions you  got here and did things your own way and followed the advice of the doctors. This is perfectly ok except that it didn't seem to work out so you are again asking for the advice.

 

And we will again offer advice but we need as detailed and precise response to our questions as possible. For start, please update your signature with this information from February. I suggest you just stick with doses and dates and leave out the descriptions.

 

Also include the brief information about any drug use prior to 2016.

 

These drugs are very dangerous and very powerful. They severely interfered with all our lives and made it impossible for us to hold down our jobs, take care of our families and fulfil our other roles, even very basic ones. As you saw it for yourself, the doctors will attribute their effects to 'mental illness' even if we previously didn't have one and throw out many diagnoses. Your case is actually quite typical and most of us have had one or the other version of it.

 

Our peers in the similar situation found a way out of this situation. Their collective wisdom is collected on this site and we provide information which anyone can study for themselves to make informed decisions on how to handle their situation after they have been harmed by medical professionals (repeatedly).

 

There are no quick fixes. Nothing can take those symptoms away over night in the same way there is no drug or a supplement that would heal a broken bone over night or within a week. Any attempts to do so only make the symptoms worse. As you have also found out for yourself. But it is possible to set on the right path that will lead to gradually healing the brain and make that long journey to healing more bearable.

 

The only way to reduce withdrawal symptoms is to reinstate a very small amount of drug (not that impossibly high dose of 40 mg Lexapro - psychiatrist have this mistaken belief that the worse the symptoms the higher dose of the drug is in order).

 

As I said, we are consulting to see what drug and at what dose could possibly be reinstated. But to be able to make that suggestion we will need all the information we asked you to provide.

 

I would also suggest reading through your thread and reading through the links that have been posted for you. Of course you are completely free to seek advice from medical professionals but it's very hard for us to help out with the results of such interventions. So it seems you will just have to make up your mind as to what advice to follow. 

 

Edited June 26, 2017 by bubble

[Shep]

4 hours ago, bubble said:

And we will again offer advice but we need as detailed and precise response to our questions as possible. For start, please update your signature with this information from February. I suggest you just stick with doses and dates and leave out the descriptions.

 

Also include the brief information about any drug use prior to 2016.

 

Once we have the information Bubble is asking for, we will be able to give you advice.

 

As far as your repeated questions about the use of other meds, have you read Robert Whitaker's Anatomy of an Epidemic?

 

This is a short video where Whitaker talks about the book:

 

Robert Whitaker, author Anatomy of an Epidemic - video

 

At some point, you really need to decide if you want to live medication free and then target that as your goal. Perhaps a reinstatement followed by a slow taper will help to stave off withdrawal symptoms, but there is no chemical fix. And you need to be in a position where you can handle using a scale or doing a liquid taper. 

 

You can heal from this, Kcs. The fact that you are sleeping 8 hours a night is a very good sign that your brain is already recovering. 

[kcs72]

Thank you...I'll go back and see what I need to do to update my signature..I appreciate the guidance from you both..

[kcs72]

I was put on Klonopin in 2016 for one bout of panic. When I learned it was a benzo, I returned to the doctor for help coming off. I was rx'd Lexapro which I'd taken in the past no issues. This time, however, first  pill shot me into hysterics. This symptom has stayed with me now 21 mos as I was tried on several other ssri's and another benzo. I ended up stopping all meds in 2017. I am 11 mos off everything and declining in health...I am practically bed bound by mental and some physical. I feel certain I have some form of brain damage. I can't do simple tasks and things are overwhelming to me. I have off behavioral outbursts and never know how my mood will be. I'm just devastated.....I don't know what if anything to do in this...Is this neurotoxicity and it is degenerative?

[Altostrata]

Hello, kcs.

 

We haven't heard from you since last June, what happened in the last 6 months?

 

What is your current symptom pattern?

[kcs72]

14 hours ago, Altostrata said:

Hello, kcs.

 

We haven't heard from you since last June, what happened in the last 6 months?

 

What is your current symptom pattern?

I've just been very unwell, thinking all the time I was suffering benzo withdrawal and just "waiting it out" but I've since researched and feel I know what happened to me; the Lexapro I took-first pill shot my brain to hell...I have suffered now daily for 21 mos (10 on and 11 off the meds). I"m no better but in fact, worse. My cognitive is horrible. I can't do little things. I lie in bed all day every day. I'm completely disabled. I have severe agitation/akathisia. I just wanted to see if anyone had experienced anything like this; what I believe is poisoning from the Lexapro and how long it takes to recover. Also, with the akathisia-if there is hope in recovering from it.

[bhasski]

27 minutes ago, kcs72 said:

. I just wanted to see if anyone had experienced anything like this; what I believe is poisoning from the Lexapro and how long it takes to recover

 

Yes I had .. but lexapro is not the ssri.. there are many. 

I am off 22 mos. You will get better.

 

I can go off bed now, though with efforts. Not long before ( some 6 mos back) I was bed-bound.

 

I am not saying this will be the timeline for you...  but you will get better.

Yes , I m still agitated , anxious , sleep disturbed, have akathisia... but everything have step down to degrees.

 

 

I can eat now.

Yes I was that pathetic.. nothing suits my stomach. All time cramps and pain.. bloating.

 

I dont know of taper... I CTed on doctors advice. But believe , things will ease of.

 

 

[kcs72]

Could I ask you more of your symptoms...I'm terrified.

[Altostrata]

There is a small subset of people who have immediate bad reactions to SSRIs such as Lexapro. You may be one of those people.

 

This may be on top of benzodiazapine withdrawal syndome.

 

What do you mean by agitation and akathisia? Are your symptoms better or worse at any particular time of day?

[kcs72]

I just stay agitated and my brain is so off. I can't do little things; get overwhelmed so easily. I lie in bed all day every day b/c I can't handle anything which i believe is a part of akathisia..They are usually consistently bad throughout the day. I wonder too about people who say their neurotoxicity is progressive and they will die from it. One person is wheelchair bound...I'm really worried b/c I'm absolutely non-functional at 11 mos off...I just know that something happened to me when I reinstated the Lexapro...first pill shot me into hysterics...I haven't been right mentally since then

[Altostrata]

You are taking 0.5mg clonazepam per day now? How does this affect you? What times of day do you take it?

[kcs72]

I can't function at all after a year off cold turkey of benzo/ssri combination. I really believe I have neurotoxicity from reinstatement of Lexapro. I've gotten progressively worse the farther off I go; I was not this bad earlier on in withdrawal. I have terrible akathisia (mental) and cannot function. I am only able to lie in bed all day. When I get up I"m derealized and everything feels electrical; feel head is in a fish bowl and it's hard not to freak out. I can't do even little things. I"m terrified I"ll be institutionalized or in a nursing home the remainder of my life..I need hope to hang on...

[Altostrata]

On 1/26/2018 at 5:32 PM, Altostrata said:

You are taking 0.5mg clonazepam per day now? How does this affect you? What times of day do you take it?

 

What do you mean by "agitated"?

 

How are you sleeping? Are you sensitive to light?

[kcs72]

I just don't feel right in my body or skin..everything bothers me...the feel of my skin...anything overwhelming...I just can't stand anything..it's been this way for awhile too...I really believe I have brain damage...I'm not really sensitive to light..I'm not on any meds; 12 mos cold turkey off benzo and ssri...

[kcs72]

I have developed odd habits/symptoms during withdrawal that are all mentally driven...I can't get out of bed or off the couch b/c of odd feelings in body and mind...like not feeling real...feel diassociated to everything...fear and agitation...I just don't feel right anywhere...does this go or do you have to get therapy? I feel ruined.

[Altostrata]

On 1/26/2018 at 5:32 PM, Altostrata said:

You are taking 0.5mg clonazepam per day now? How does this affect you? What times of day do you take it?

 

[kcs72]

I'm off all meds....12 mos and still so sick

[kcs72]

Is there hope this will end; neurotoxicity from Lexapro then developed mental akathisia....Please give me hope. I'm a year off and so sick in brain and body

[Carmie]

Hi Ks, 

 

How are you doing after 22months off the benzos and SSRIS now? Have you improved at all? Sending hugs🤗