Marissa: New to forum: Need some advice & support

[Marissa]

I have been on ssri's (different ones at different times) for about 20 years (began at age 12) and have been on Welbutrin for 12 years.  I began slowly tapering off 20 mgs of Lexapro last March.  By July I was down to 5 mgs every other day but I couldn't take it so I went back up to 5 mgs daily.  In August I quickly tapered off Welbutrin because I think it was too activating.  In the mid-fall I cross tapered from 5 mgs of Lexapro daily to 10 mgs of Prozac daily.  My post acute withdrawal symptoms became unbearable by the end of November and I started taking gabapentin and Horizant.  I was still suffering more than I could manage so I went up to 10 mgs daily and then 20 mgs daily of Prozac.  (I had been on 40 mgs daily of Prozac when I had taken it as a therapeutic dose in the past).  Now I am struggling with either feeling too fatigued and cognitively dulled on gabapentin or feeling like my heart is beating too fast and my stomach is tight if I don't take enough gabapentin.  (Throughout my withdrawal process my physical symptoms have been very intense.)  I feel overwhelmed by minor stresses too easily. I also have been taking trazodone because I can't sleep at night without it. 
 
I am feeling worn down by this process.  I don't feel like where I'm at with my medication is sustainable--I can't keep going between fatigue/cognitive dulling vs. being way too activated.  I feel like the post-acute withdrawal has been way more intense than psychiatric symptoms I have had (it's out of this world!).  What really scares me is I think the withdrawal process has really messed up my brain and even going up to 20 mgs of Prozac I'm still not feeling "normal" enough.  I fear that I will have to live with feeling way way too activated long-term even if I end up choosing to go back up to the full 40 mgs of Prozac.  I could end up way worse than when I started this tapering process back in March.  Advice and support welcomed!!!!!

Edited January 19, 2014 by Petu
fixed text

[mattinsmom]

I am sure that someone much more knowledgeable than I will respond soon. I just wanted to say that I hear your frustrations and your fear. I have found so much support here and I am certain you will too. 

[Petunia]

Hi Marissa,

Welcome to SA, thank you for posting an introduction.  I'm sorry you are going through such a difficult time and have ended up on so many medications.  It sounds to me like you have a destabilized nervous system from coming off Lexapro and Wellbutrin too fast, followed by the addition of more medications and a lot of changes.  It may take a while before you are able to stabilize and begin a proper taper.

 

Are you taking Horizant and Gabapentin? It sounds like you have been taking different dosages of Gabapentin in order to try and manage your symptoms, changing dosages of medications can cause further destabilization.  In order for you to calm your nervous system enough to begin tapering, you will need to stay on one dosage of each medication for a while.

 

What other symptoms are you having besides fatigue and cognitive dulling, is there a pattern to your symptoms?

 

It may also be that the Prozac has become too activating for you, but someone else with more experience may be able to comment on this.

 

It would be helpful if you put your drug and withdrawal history in your signature, including dates and dosages.  Instructions for how to do that are here:

 

http://survivingantidepressants.org/index.php?/topic/893-please-put-your-withdrawal-history-in-your-signature/

 

When we know a little more about your situation, we will be able to offer some suggestions.  You have come to the best place for support, there is a lot of friendly help and information here.

 

Petu.

 

 

[Altostrata]

Welcome, Marissa.

 

Did the Prozac relieve some of your symptoms? Is Horizant helping?

 

Are you able to see any of these doctors http://survivingantidepressants.org/index.php?/topic/988-recommended-doctors-therapists-or-clinics/

[Marissa]

Thanks for your support and comments guys.  Currently I'm taking gabapentin, Horizant, Prozac, and trazodone.  The gabapentin and Horizant have been very helpful with my worry and intense physiological arousal (muscle tension, heart feels like it's beating too fast).  Increasing the Prozac has also helped but even being back on 20 mgs of Prozac I am suprised by my level of physiological arousal.  I started adjusting the gabapentin dose because I've been having cognitive dulling and fatigue.  But I don't really know a good system for how much to cut and over what period of time so I've been all over the place with it (clearly not good).  It seems when I take more gabapentin, I get dulling and fatigue and when I don't take as much I get muscle tension and my heart beating too fast.  I don't know if the muscle tension and beating heart is the ssri post-acute withdrawal still (probably) or withdrawal then from the gabapentin (and I'm not sure what the lag time is for experiencing the withdrawal after cutting the dose).  I had been taking 1800 mgs of gabapentin (plus 600 mgs of Horizant) and lately I've been taking 900-1200 mgs of gabapentin plus the Horizant.  It's also been variable how much trazodone I need at night (25 to 75 mgs).  Usually I like to be really systematic about things but I get really miserable on either extreme (dulling/fatigue vs. activation).  Also of note,  I cross tapered from a little Lexapro to a little Prozac in November which complicates things further...in hindsight I would have been much better sticking to the Lexapro for the time being.  I possibly could see one of the doctors on the list...it's something to think about. 

[Altostrata]

Trazodone may be interacting with Prozac in a bad way, see http://survivingantidepressants.org/index.php?/topic/2883-tips-for-tapering-off-trazodone-desyrel/?

 

What is your daily symptom pattern?

[Marissa]

Well that's highly disturbing about the trazodone.  What do people take instead?  It seems like everything else has the potential to cause weight gain, which is a major reason why I decided to try to get off the ssri's.  Ugh. 

 

Right now my symptoms are: I wake up feeling very tired and at times have cognitive problems.  During the day I am tense and stressed over things I used to handle way better.  I can't sleep at night without the trazodone.  When I try to reduce the gabapentin more, I get the activation (tension in my stomach muscles & feel like my heart is beating too fast). I also have a lot of stress/anxiety related physical health problems--which I had before starting the taper but the have gotten way way worse and I even developed a new one: interstitial cystitis.  Interestingly a major treatment for it is antidepressants.  So I don't feel good physically a lot of the time.  I can't stay on this much gabapentin because of the fatigue/cognitive problems yet I can't see feeling so extremely activated without it.  I guess what you are saying is to look into what would happen to stop the trazodone.  A possiblity--but I would have to have an alternative.  I'm a work in progress...My current thought is to perhaps take Horizant twice a day (for a total of 1200 mgs) and not take the regular gabapentin and see if that helps reduce the sign effects.  Not sure.

[Marissa]

Further clarification: my fatigue is worse in the morning but can go on all day.  I also have a dry mouth that started when I increased the Prozac.

[Marissa]

Lastly, I wonder if I should cross taper back to Lexapro since switching from Lexapro to Prozac in November seems to have made things much worse.  I don't know if I should try to stay the course now on the Prozac.

[areyouthere]

Hi Marissa,

 

I'm relatively new here myself , read your intro. and just want to compliment you on your very clearly communicated description of what medications you have been on, switches, amts. , symptoms etc. 

 

So often when one is experiencing strange & frightening symptoms accompanied by the cognitive confusion that follows it takes a while for the folks here to get a picture of what is going on. This will be helpful.

 

It must be very, very frustrating to know exactly how you are feeling and why ( which drug is causing the symptom) but not know how to stop the cycle.

 

You have come to a good place for that. I welcome you and hope that soon you can get things under control and manageable to the point that you can taper comfortably.

 

A good start to your New Year!!

 

RU

 

And PS. I can't answer your questions. Sorry about that. But someone will be along to help you further...

[Altostrata]

What are the symptoms that are worse?

 

20mg Prozac is often too high a dosage when switching from a partial dose of another antidepressant. You may find 10mg is a more tolerable dosage.

[Marissa]

Thank you AreYouOutThere...I'm doing my best!

 

Altostrata--I realized I incorrectly said I something in my intro...when I cross tapered over three weeks from 5 mgs daily of Lexapro, I landed on 10 mgs every other day of Prozac (not 10 mgs daily, like I had written before).  (This was mid-Oct to mid Nov).  Then in December I went up to 10 mgs daily of Prozac and then 20 mgs daily of Prozac after another week.  I felt better with both of those increases of the Prozac.  I think, from what I am reading on this site, that something must have gone wrong when I moved from the Lexapro to the Prozac.  You asked what got worse: worry, need for everything to be finished/accomplished (no loose ends)--not possible in life, need for things to be straight, clean, and organized, anger at people who get in the way of these rigid needs, intense intense physiological arousal---muscle tension and racing heart.  Feeling like I was shot up with adrenaline.  Needed more trazodone to sleep.  Worsening of stress related physical health problems and development of interstitial cystitis.  Feeling like I can't handle my life or be functional. Fortunately I don't feel this horrible now but that's what I felt like beginning in mid November. 

[Altostrata]

Has anything gotten worse since you've taken 20mg Prozac this last time?

[Marissa]

Started getting fatigue, cognitive problems, feeling out of it, and dry mouth.  Fatigue, cognitive problems, and feeling out of it are reduced with less gabapentin.  (But then I am too physiologically aroused w/ less gabapentin--muscle tension, heart beating too fast).  Maybe you are saying that it could be the Prozac rather than the gabapentin to cause these things?  I just assumed that with being on more Prozac, I was experiencing more of the side effects of the gabapentin. 

[Marissa]

And when I go down on the gapapentin dose the fatigue, cognitive problems, and feeling out of it improve.

[Altostrata]

Started getting fatigue, cognitive problems, feeling out of it, and dry mouth.  Fatigue, cognitive problems, and feeling out of it are reduced with less gabapentin.  (But then I am too physiologically aroused w/ less gabapentin--muscle tension, heart beating too fast).  Maybe you are saying that it could be the Prozac rather than the gabapentin to cause these things?  I just assumed that with being on more Prozac, I was experiencing more of the side effects of the gabapentin.

Yes, it sounds like when you reduce gabapentin, you are getting side effects from too much Prozac.You also have side effects from gabapentin.You might hold on the gabapentin for now and reduce the Prozac.

[Marissa]

Thank you Altostrata.  This is very interesting.  Kinda the opposite of what you would think.  How the Prozac doesn't behave the way it use to before I started this whole tapering process.  I appreciate your help!!!

[Marissa]

Ugh.  So I've thought a lot about what Altostratra suggested about reducing the Prozac and I'm so scared to try it!  Clearly something has to give because I can't stay in this condition, but It feels so risky because I don't want to get worse than I am if it turns out I'm not someone that reacts that way.     I felt like increasing the Prozac helped, rather than made it worse, but something was set off when I cross tapering from the little bit of Lexapro to the little bit of Prozac in the fall. 

 

In the meantime, I started taking Horizant twice a day rather than once a day, which has helped but I'm still having a lot of problems with anxiety/muscle tension/heart beating too fast vs. fatigue/cognitive problems.  My friend asked me today how long it's been since I felt ok mentally and physically and honestly I was managing ok with the taper and everything until about early June.  Essentially have felt sick since then.  I wish I had slowed down the taper and now been so naive about this whole process.  Now I feel like my brain has been forever changed by the withdrawal process and I don't know how to get myself back to how I was when I was on the medication (nevermind feeling ok totally off them). 

[Altostrata]

Reducing the Prozac very slightly is a way to test the waters.

 

It still sounds like you're taking something that's too stimulating for you. Prozac is the likely culprit.

 

Mixing up a more elaborate drug cocktail is likely to lead to more problems. It's your choice.

[Marissa]

Thank you Altostratra.  I agree that it's up to me.  I guess I was just venting because it's so confusing and there is a lot at stake.  I saw my psychiatrist this week and he didn't believe me when I said that I'm still going through ssri post-acute withdrawal.  I'm trying to find the best journal article to give him because he seemed open to hearing my perspective.  I've worked with him for a long time so I'm not really ready to try someone else.  Sadly it seems like most of the articles are about short-term withdrawal symptoms or blame the patient for how they tapered.  Doesn't seem to be the kind of studies that are so needed. I'm sure I'm preaching to the choir here.

[Marissa]

Well Altostratra you are right about the ssri being too activating.  I feel like I am in a real bind. I'm depressed now and I added 10 mgs of lexapro to the 20 of prozac I was taking (because I thought something happened during the cross taper between the two).  My depression is gone but it's striking the degree of physicological arousal I'm experiencing.  So it's now very clear to me that the ssri's have become to too activating.  What a mess.  Because they still help me in important ways with other symptoms. 

[Altostrata]

Marissa, you're making a lot of changes in your drugs, in a very uncontrolled way. This makes the situation very complicated.

 

Increasing the SSRIs may also increase intensity of drug-drug interactions with trazodone.

 

You are now taking 3 serotonergics: Lexapro, Prozac, and trazodone.

 

You need to minimize your drug burden, not increase it.

 

Please try to see one of the doctors on our list, or find one who will help you minimize your drugs.

[Marissa]

Your right.  This is a mess.  My current doctor's method isn't working at all for me.  I'm miserable.

[Marissa]

Oh and I forgot to even mention that I tried 2 mgs and then 1 mg of Intuniv for a couple of days.  It's been hard for me to accept that my psychiatrist I've worked with for almost 13 years doesn't have the expertise with this issue.  But I'm on board now, given how activated I feel with the Lexapro that was added.  Such a total mess.  And I'm really scared.  I need to be very functional.

[Altostrata]

Why did you switch from Lexapro to Prozac in the first place?

[Marissa]

For a very stupid reason.  Because I was tired of paying the drug company so much for the 5 mgs of Lexapro.  And Prozac is cheap.  Also thought it would be easier to get off of because of the longer half life.  I now realize that this was very bad, misinformed move.  Plus the Horizant I'm taking costs way more than the 5 mgs of Lexapro did. In the past I had been on different SSRI's.  I knew that I responded well to Lexapro, Celexa, and Prozac.  Thought it wouldn't be a big deal.

[Altostrata]

My guess is you have experienced a failed switch to Prozac. It can't compensate for the effect of the Lexapro. If that is true, reducing the Prozac to 10mg might relieve some of the excessive serotonergicity and not make symptoms worse.

 

Just my guess.

 

When and why was the trazodone added? Did you see any benefit from it?

 

Did the Horizant help any?

 

Yes, your doctor loves to mix random cocktails.

[Marissa]

I think you may be right.  You have been so helpful.

 

I've been anxious throughout this process but over the past month I've become depressed.   What I think could happen is if I reduce the Prozac, I will get rid of the physioloigcal arousal but may have more depression and other anxiety symptoms.  I know when I increased the Prozac in December I felt better in some ways.  It's a terrible bind.  At least I feel like now I have a better sense of what might be going on, although it still feels scary.  I'm going to think about it for a few days to decide if I'm going to reduce the Prozac now or wait until I can reduce this depression (without changing meds but with therapy/my coping skills, etc).  I probably will reduce it.

 

I started the trazodone in July at 25 mgs and now I'm up to needing 100 mgs.  I would not be able to sleep at all without trazodone.  Benadryl had worked for me in the earlier phase of the taper process but it's not enough now. The Horizant and gabapentin seem to be dampening the physiological arousal but I know it's still there when they start to wear off.

 

It's been hard for me to accept that psychiatry is not informed about all of this but given what I've experienced now with the Lexapro it's crystal clear to me that something else besides what my psychiatrist thinks has been going on.

[Marissa]

Made my decision.  I'm going to reduce the Prozac tomorrow and take 10 mgs rather than 20 mgs.  It's the suggestion that Altostratra has made all along and the things that I've tried recently haven't helped and in the case of the the Lexapro, made things strikingly worse.  Feeling a little more hopeful that I'm going to find a way out of this scary mess.  Thank you Alto for your help!

[Rhiannon]

Marissa, I haven't commented because with all the drugs you're taking and the way you keep switching them up, I can't help you. I think you reached the point even before coming to this forum where all the changing you had done had induced enough neurobiochemical chaos that adding/subtracting/changing meds is just going to keep making things worse. I just don't have strategies to help people who are constantly changing their meds.

 

But I do have one suggestion that might be helpful. :-)

 

When you said "It's been hard for me to accept that psychiatry is not informed about all of this but given what I've experienced now with the Lexapro it's crystal clear to me that something else besides what my psychiatrist thinks has been going on."

 

That, I can offer a suggestion about: Read Anatomy of an Epidemic by Robert Whitaker. It will help you understand how psychiatry got to the place where it is today with all these drugs.

 

Good luck to you!

[Altostrata]

It's likely you cannot sleep because of the overarousal from the SSRIs.

 

One can cope with depressive symptoms. The constant overmedication is not good for your nervous system. It's also quite possible during the day you are getting adverse reactions from the SSRI-trazodone combination.

 

You might consider reducing the Prozac gradually, see http://survivingantidepressants.org/index.php?/topic/759-tips-for-tapering-off-prozac-fluoxetine/

but a little faster, perhaps 10% every 10 days.

 

For information about trazodone http://survivingantidepressants.org/index.php?/topic/2883-tips-for-tapering-off-trazodone-desyrel/

 

Also, you need a new doctor, see http://survivingantidepressants.org/index.php?/topic/988-recommended-doctors-therapists-or-clinics/

[Marissa]

To be honest, I felt upset by some of the frustration expressed for all of the med changes that I have done. It takes time for someone taking ssri's for 21 years to shift their views on medicines and psychiatry. With that said, I have been learning a lot and have a much better understanding  of why people may have been frustrated.  I have read some of Glenmullen and Healy's work.  And I had an consult via the e-clinic with David Healy.  So I'm making progress on those fronts.  I get so scared, inpatient, and frustrated and impatient and I start changing things around.  I understand now much more why I need to be slow and systematic.  Right now I'm holding still for awhile as I now get that I am destabilized.

[mammaP]

Hi Marissa, it's great that you had a consult with Dr Healey. Was he helpful? 

Is there any advice he gave you that you could pass on? It's always interesting to know what 

the good doctors have to say. 

 

I understand why you get impatient, we have all been there and had to learn the lesson

that slow and steady is the way to go. When you are feeling bad it's natural to want to do

something, anything, to feel better and when you've been on medication for so many years

it's second nature to look to some sort of medication to ease it. 

 

It can take a while to stabilise but it will happen, just take it one day at a time. 

[Marissa]

Yes, my consult with David Healy was helpful.  He was super super validating.  Which I of course really appreciated.  He emailed me this handout on ssri withdrawal, which I am not sure how to upload.  Although now that I know what it looks like, I saw it somewhere else on the site.  It's a new version that isn't posted yet on his Rxist.org site.  He is working on writing my report that I will be getting back from him soon.  One of the things that's hard is that he wasn't able to give me answers about my outcome--in the sense of, for my presentation, did he think I will be able to get off completely. And what might I be left with.  It seems it's a balance between gloom and doom and naïve optimism.  Also, I was feeling incredibly restless when I spoke to him and he wasn't able to get me concrete instructions for what to do that day to help.  (However, he did email me the handout and he is working on my report.)  It's scary.  But I feel confident that I went to the best person to talk to about this.  And that I appreciate his openness with the limits to what we know.  I also recently started watching a couple of utube videos of him speaking and it's really awesome to see him advocate and give us a voice.  Maybe at some point when I am stable and know more, I can play a helpful role in advocating. 

[mammaP]

I'm glad it was helpful to see Dr Healey but can understand that you might feel a bit 

disappointed that he didn't have the answers you were desperate to hear. 

 

I do believe very strongly that everyone can recover and get off these drugs eventually,

for some it is so very slow but they are getting there. And others who are in withdrawal after

C/T or too fast tapering are getting better.   

[Marissa]

I have been going through withdrawal hell now for 1.5 years.  I'm curious if people have tried Librium to help with the first phase of the withdrawal from an SSRI and/or trazodone.  Clearly one couldn't keep taking it for the post-acute withdrawal phase without becoming dependent.