289 replies to this topic

[EBB]

OMG your story is just shocking. I'm so very sorry. It's amazing you've been through all of that. My issue with adding the SSRI is that in my genetic testing, it said the SSRIs would not be effective for me. What confuses me though is that I took Zoloft, Lexapro, and Celexa for over 10 years. I honestly don't know how well ANY of them worked, but I most changed by Cymbalta. At this point I'd rather be back on it than be in this suffering. The side effects were not great, but this is killing me. It wasn't until 2015 that I went on Effexor. Then I switched to Cymbalta. And I had no withdrawals switching. Do you think it might work to try the tablet Effexor, not the EffexorXR? Is the tablet Effexor taperable somehow? I would switch to ANYTHING to get me out of this withdrawal. 

[EBB]

EBB I am so sorry that you are feeling so badly.  I know how awful it can be.  That FB site has very strong opinions on things and not all of them are correct.  Most people there had been taking Cymbalta for pain so they haven't dealt with the anxiety and depression.  I found this group to be the most helpful and kind.  I know how you feel that there isn't a light at the end of the tunnel but there is I promise you.  

To answer your question, I believe FH went on Zoloft in order to end his withdrawl symptoms.

Thank you Juli, What do you think I should do?  I agree, the FB folks don't really deal with the anxiety and depression side of this. Do you think I can stabilize on 10 beads? Is this just an uphill battle? It's been 3 months and I'm just so so tired of this. It's such a strain on my family and I have no life. Nobody understands. I've seen some improvement but I just want this to END! I also think I may be having more of a problem right now because of PMS? Seems many people say that?

[juli]

I was on Prozac and Celexa before and I am also not sure how great they worked but with Cymbalta I got better.  Then the Cymbalta wasn't controlling the anxiety so my doctor added the mood stabilizer Oxcarbazepine.  It worked miracles for me.  My doc didn't diagnose me as bipolar but she said I could be on the spectrum.  She said I could go off Cymbalta because the Oxcarbazepine could cover it all. So I stupidly went cold turkey and suffered 8 weeks even though I reinstated the next day.

 

FH is helping me cross-taper with Lexapro and it is going quite well.  So even though the SSRI's didn't manage your symptoms before it could still help with withdrawl like it is with me.

 

It's hard to say what I would do.  After three months I am sure that you are looking for relief.  At the end of the day you have to look at your options and make a decision.

 

We are so blessed to have FH who does such a wonderful job of laying out the options for us.  There really isn't anywhere on the web to find this.

 

Is your doctor helping you decide?

[EBB]

I was on Prozac and Celexa before and I am also not sure how great they worked but with Cymbalta I got better.  Then the Cymbalta wasn't controlling the anxiety so my doctor added the mood stabilizer Oxcarbazepine.  It worked miracles for me.  My doc didn't diagnose me as bipolar but she said I could be on the spectrum.  She said I could go off Cymbalta because the Oxcarbazepine could cover it all. So I stupidly went cold turkey and suffered 8 weeks even though I reinstated the next day.

 

FH is helping me cross-taper with Lexapro and it is going quite well.  So even though the SSRI's didn't manage your symptoms before it could still help with withdrawl like it is with me.

 

It's hard to say what I would do.  After three months I am sure that you are looking for relief.  At the end of the day you have to look at your options and make a decision.

 

We are so blessed to have FH who does such a wonderful job of laying out the options for us.  There really isn't anywhere on the web to find this.

 

Is your doctor helping you decide?

Thanks Juli, helpful info. I'm confused tho - does that mean that reinstating didn't help your withdrawal? Or that it took 8 weeks for you to get out of withdrawal after reinstating? Or did the Lexapro get you our of withdrawal? Also, what made you choose Lexapro, rather than one you'd been on before? Thanks for your guidance and help.

[juli]

I guess I am unusual because I didn't feel entirely better after I reinstated.  Each week was better than the last but it took 8 weeks for me to feel back to normal.  So, reinstating helped but not entirely until the 8 week mark.

 

My doctor chose Lexapro for me.  I am not sure why.  She does this a lot and maybe has had good luck with it?  We are using the Lexapro to cross-taper off of Cybmalta.  I started this after I was stable for a couple months.

[gail]

Juli,

Thank you so much for writing all this, it helps a lot.

Maybe Ebb could give it a try with another antidepressant. Another wait, but the longer we wait the longer the agony.

[fishinghat]

Ebb
"My issue with adding the SSRI is that in my genetic testing, it said the SSRIs would not be effective for me."

Very possible.

"Do you think it might work to try the tablet Effexor, not the EffexorXR? Is the tablet Effexor taperable somehow? "

Its impossible to say if it will work or not but it works similar to Cymbalta. It also has a horrible withdrawal. It can be weaned off of by using a razor blade and scraping a little more off each day. A very accurate scale needs to be used to be sure the dosages are accurate and consistent.

Juli
"My doctor chose Lexapro for me. I am not sure why. She does this a lot and maybe has had good luck with it? We are using the Lexapro to cross-taper off of Cybmalta. I started this after I was stable for a couple months."

Your dr did well. The best ADs to use to get off ADs are Lexapro, Prozac and Zoloft. They are easier to wean off of.

[juli]

Seems like trying another anti-depressant to deal with the withdrawl would be a good step.  I think there could be some start up anxiety at the beginning but you have the Ativan for that.

 

It's so hard to say but could be worth a try.

[EBB]

Ebb
"My issue with adding the SSRI is that in my genetic testing, it said the SSRIs would not be effective for me."

Very possible.

"Do you think it might work to try the tablet Effexor, not the EffexorXR? Is the tablet Effexor taperable somehow? "

Its impossible to say if it will work or not but it works similar to Cymbalta. It also has a horrible withdrawal. It can be weaned off of by using a razor blade and scraping a little more off each day. A very accurate scale needs to be used to be sure the dosages are accurate and consistent.

Juli
"My doctor chose Lexapro for me. I am not sure why. She does this a lot and maybe has had good luck with it? We are using the Lexapro to cross-taper off of Cybmalta. I started this after I was stable for a couple months."

Your dr did well. The best ADs to use to get off ADs are Lexapro, Prozac and Zoloft. They are easier to wean off of.

 

Thanks for the support everyone, I guess I'm now worried about the risk of doing an SSRI again. Despite the fact that I've taken Lexapro, Zoloft (twice) and Celexa, my recent gene test showed I have SLC6A4 in the L(A)/S form. SSRIs are termed an "Intermediate risk" for me. What does that mean? Well the info I have explains that "SLC6A4 is a presynaptic transmembrane protein responsible for serotonin reuptake. 

• SSRIs act by blocking this transporter to produce a therapeutic response.

• Higher risk of side effects or intolerance to SSRIs in S or L(G) allele carriers.

• Therapeutic options such as SNRIs or non-SSRI antidepressants may be used if clinically indicated."

After what you've described with Effexor, I don't want to get on that one again. I was already on the XR and I had bad insomnia. I don't want to do another awful withdrawal. This is all so confusing. It makes sense to me logically that if I was on Zoloft twice before and Lexapro once before and didn't experience anything horrendous, I probably wouldn't have an awful adverse reaction. But it seems a risk. Who knows what state my brain is in now. It seems most likely that it just wouldn't help the withdrawal much. And then I'd be  on Ativan, Hydroxyzine, Clonidine, an SSRI and Cymbalta! 

Fishing Hat, do you know anything about the genetic side of this as I mentioned above?

What are you thoughts? I feel really stuck

[EBB]

Seems like trying another anti-depressant to deal with the withdrawl would be a good step.  I think there could be some start up anxiety at the beginning but you have the Ativan for that.

 

It's so hard to say but could be worth a try.

I agree except for what I said above to Fishing Hat...what do you think? You are so lucky you could end withdrawal. Thank you for your help and encouragement.

[EBB]

Juli,

Thank you so much for writing all this, it helps a lot.

Maybe Ebb could give it a try with another antidepressant. Another wait, but the longer we wait the longer the agony.

Except for the genetic roadblock - there doesn't seem to be any good solution! Why me?? I just want to stabilize and be here for my family. I'm a good mom and wife and I have to get through this. Do you think I will EVER stabilize Gail?

[EBB]

I guess I am unusual because I didn't feel entirely better after I reinstated.  Each week was better than the last but it took 8 weeks for me to feel back to normal.  So, reinstating helped but not entirely until the 8 week mark.

 

My doctor chose Lexapro for me.  I am not sure why.  She does this a lot and maybe has had good luck with it?  We are using the Lexapro to cross-taper off of Cybmalta.  I started this after I was stable for a couple months.

Who. So that means you just stopped taking it for ONE day and it took 8 weeks to get stable? 

[juli]

Yep. I was on 40.  So I did 20 for three days then zero.  All hell broke lose. I reinstated to 40 the next day.

[fishinghat]

"my recent gene test showed I have SLC6A4 in the L(A)/S form"
"• Higher risk of side effects or intolerance to SSRIs in S or L(G) allele carriers."

That is the main issue. Those who have that gene abnormality USUALLY have more side effects and ssris are USUALLY less effective. That gene is used by our bodies to produce the protein that's purpose is to reuse serotonin.

I don't want to put words in your mouth Juli but I think EBB missed the point that once you reinstated to 40 mg it took 8 weeks to stabilize completely. At least I think that is what she is asking about.

[fishinghat]

Ebb, what is your current dose on hydroxyzine and clonidine?

[juli]

Yep. Once I reinstated to 40mg it took 8 weeks to stabilize.

[EBB]

Ebb, what is your current dose on hydroxyzine and clonidine?

I am taking hydrox 20mg twice during the day, 50mg at bedtime and 20 around 3 am. I'm also taking .5 Ativan around 11am-12noon, .5 at 5pm, 1mg at bedtime and .5 at 5-6am. I haven't gotten an Rx for Clonidine yet. Seeing my doc tmrw. What should I ask her for? I feel I'm really in a bad way with the genetics and all the meds I'm having to take. What are your thoughts?

[EBB]

"my recent gene test showed I have SLC6A4 in the L(A)/S form"
"• Higher risk of side effects or intolerance to SSRIs in S or L(G) allele carriers."

That is the main issue. Those who have that gene abnormality USUALLY have more side effects and ssris are USUALLY less effective. That gene is used by our bodies to produce the protein that's purpose is to reuse serotonin.

I don't want to put words in your mouth Juli but I think EBB missed the point that once you reinstated to 40 mg it took 8 weeks to stabilize completely. At least I think that is what she is asking about.

So where does this leave me? Just having to suffer, hoping that I stabilize? I didn't feel bad all those years on Zoloft/Lexapro/Celexa, it just seemed like they didn't do a ton, I don't know, it's confusing....

[fishinghat]

In general the hydroxyzine and clonidine are much safer meds than an AD or benzo. The standard dose for hydroxyzine is 25 mg 3 times a day and 50 mg at bedtime. For Clonidine it is 0.1 mg twice a day. I liked the way my dr let me do my hydroxyzine. He wrote me a prescription for 100 mg 4 times per day. That is the max dose. He wrote the prescription for 25 mg capsules so another words 16 capsules per day but only issued the script for one month. This gave me the ability to slowly increase my dose until I found what worked the best. The next month he wrote a new script for that level of usage. Not many drs will work with a patient like that though. I think you definitely need to go to at least 25 mg 3 times per day and 50 at bedtime. Tell him you would like to lean on these two drugs to not only help your withdrawal symptoms but to also avoid having to increase your Ativan down the road.

No promises but if we can get you to a better dose on the hydroxyzine and clonidine, enough to make the withdrawal tolerable, then time will take care of the rest. When the withdrawal finally subsides then you can look at getting off the rest of the Cymbalta and avoid having to add another AD just to survive. If upping the dose on the hydroxyzine and clonidine isn't enough what have you lost? You can still try another AD or go up on the Cymbalta beads. The nice thing about the hydroxyzine and clonidine is no withdrawal. I would much rather lean on them than on a benzo or an AD.

[EBB]

In general the hydroxyzine and clonidine are much safer meds than an AD or benzo. The standard dose for hydroxyzine is 25 mg 3 times a day and 50 mg at bedtime. For Clonidine it is 0.1 mg twice a day. I liked the way my dr let me do my hydroxyzine. He wrote me a prescription for 100 mg 4 times per day. That is the max dose. He wrote the prescription for 25 mg capsules so another words 16 capsules per day but only issued the script for one month. This gave me the ability to slowly increase my dose until I found what worked the best. The next month he wrote a new script for that level of usage. Not many drs will work with a patient like that though. I think you definitely need to go to at least 25 mg 3 times per day and 50 at bedtime. Tell him you would like to lean on these two drugs to not only help your withdrawal symptoms but to also avoid having to increase your Ativan down the road.

No promises but if we can get you to a better dose on the hydroxyzine and clonidine, enough to make the withdrawal tolerable, then time will take care of the rest. When the withdrawal finally subsides then you can look at getting off the rest of the Cymbalta and avoid having to add another AD just to survive. If upping the dose on the hydroxyzine and clonidine isn't enough what have you lost? You can still try another AD or go up on the Cymbalta beads. The nice thing about the hydroxyzine and clonidine is no withdrawal. I would much rather lean on them than on a benzo or an AD.

Thank you, I agree. I will ask for this formula tomorrow when I go to the doc.

1. How much clonidine should I ask for in the Rx to give me flexibility? 

2. How late in the game can I try adding in Cymbalta beads? I'm concerned it's already been 3 months and it will be too late at some point.

3. Do you think I'll be ok?

4. You said your wd went on for 8 months and only stopped bc you did an AD; same for Juli. What if I'm still in withdrawal in a year??

[juli]

FH and EBB I am sorry to have added confusion to the conversation. EBB I stabilized completely 8 weeks after I did a full reinstatement.  I am using the Lexapro now, 2 months later, in order to do a cross taper off of Cymbalta and on to Lexapro.

[fishinghat]

1. I believe that .1 mg twice a day is max.

2. As time goes on the withdrawal will fade anyway. I have never noticed a time limit with anyone. I know of several who have added beads after a couple of months but I don't remember anyone trying that after 4 or 5 months because they usually start feeling better by then or go on another med like hydroxyzine, AD, Clonidine, benzo, etc.

3. Honestly, I am hopeful. If you are treatment resistant than it may require great patience.
4. Research shows that about 20% stay in withdrawal for 8 months or more. By that time we should have found something to help you out. We haven't even discussed supplements yet so don't give up. It can be a long road. Time and patience.

[EBB]

Thank you FH, I'm terrified. And sad. And mad.

Do you think that in the course of withdrawal it gets easier? Do symptoms ease up?

[EBB]

FH and EBB I am sorry to have added confusion to the conversation. EBB I stabilized completely 8 weeks after I did a full reinstatement.  I am using the Lexapro now, 2 months later, in order to do a cross taper off of Cymbalta and on to Lexapro.

No worries! I appreciate your input very much. I actually did understand your comment...

[gail]

Yep. Once I reinstated to 40mg it took 8 weeks to stabilize.

That is indeed a very rare case. Never heard of that in all the time I've been here.

Juli, you are the champion here! By the way, thank you for your contribution to the forum, always good to read you! Xx

[fishinghat]

"Do you think that in the course of withdrawal it gets easier? Do symptoms ease up?"

Symptoms do fade with time.

[EBB]

HELP!

1. Is part of withdrawal to be obsessing about withdrawal?

2. I am just beyond absorbed with worry and running possible scenarios in my mind over and over - is this normal for withdrawal?

I'm a highly sensitive person who tends to obsess and ruminate, but NEVER like this. When I'm in a window (been a couple days since one) it's better. I just feel like this has happened to the wrong personality type. I can't let the pressure of this go. I keep overthinking every possibility. ALL DAY.

3. Would Effexor potentially help me get out of withdrawal? I'm thinking that maybe I should just get back on EffexorXR bc it's in the category that's supposed to work for me and stay on it. As all of you have pointed out, I'm concerned that it's been too many years on meds and I'll need an AD.  What are the risks of doing Effexor other than it's a crappy withdrawal? Do you suggest the SSRIs to people because they work for most people and they are easier to get off of which is most people's goal? My goal is to just feel better, like I used to. When I took Effexor in 2015 it was ok. I had some some insomnia, but it was ok. I sure as hell didn't have obsessive thoughts like this.

I haven't added the clonidine yet, but I'm scared by what's happening. I've tried staying busy and distracting myself, I'm exercising moderately, I'm eating a strict organic diet. WHAT is THIS? Does this happen in withdrawal or am I going crazy?

[fishinghat]

1. Absolutely
2. Absolutely
3. Potentially. Like all ssri/snri there is the risk of sexual malfunction, thyroid issues, liver failure,tinnitus, restless leg syndrome, tachycardia, high blood pressure, low sodium levels, weight gain, slows clotting, can damage red blood cells, alters RNA, hyperglycemia, mania, Stevens-Johnson Syndrome, and seizures to list a few
"Do you suggest the SSRIs to people because they work for most people and they are easier to get off of which is most people's goal?" Yes

Unluckily this is a common occurrence in withdrawal. Not unusual. It is horrible, devastating and terrifying. Get that clonidine going so you can feel better. Did the dr raise your hydroxyzine as well?

[gail]

Dear Ebb,

Please see your doctor about effexor. Same category as Cymbalta. Something needs to be done here Ebb, and you know that!

From what I'm reading, it's part withdrawal combined to the old condition coming back and worse. Now, make that appointment and ask for effexor, never mind the withdrawal about this med.,if it comes to that, now you have tools to withdraw properly.

Make that phone call, remember that it can't be worse than now! It is needed that you try something.

I can't remember why you quit Cymbalta, can you explain to me? I'll try to find your old posts Ebb.

We're turning and turning around here, you agree? A move needs to be made sweet Ebb. Please, for you first and the family. You've tried adding beads, didn't work, you may be like Juli, in need of a start over. With love, Gail

[gail]

Ebb,

I just read that Cymbalta made you feel awful plus the drinking like a fish.

Since effexor and Cymbalta are in the same category, I now doubt that effexor is the one for you. Sorry about the preceding post. I have not heard or read that ssri' made you feel that bad. Geez, up to this point, SSRI's could be the answer to limit the side effects.

Prozac, Zoloft, Celexa, Lexapro is a bit like Celexa. Brother and sister in law do great on it, seems that Juli and Cheryl also. If my mind is correct.

I wish that I could do more than that for you, just like myself, you may be resistant to ad's.
Which is quite a dilemma. If so, mood stabilizers can help. Talk your doctor about this!