Emilee Trying to get off of Paxil, thinking about TMS to help..thoughts?

[Emilee]

Hi everyone,

 

This seems like a great community and very well informed. Do people ever meet up in person? That would be lovely too.

 

My story: I was on paxil 20 mg for 3 years, starting in 2009.  About a year ago, I decided to start tapering off of it. I never suffered from depression before, but had chronic pain (headaches, pelvic pain) which led me to go on Paxil in the first place. My mother suffered from strange chronic pain and many other problems about 20 years ago and was put on paxil and feels like it saved her life. She is still on it with no side effects and it hasn't stopped working for her. Thus, I thought it could help me too. While on paxil, I suffered little side effects and felt pretty good, although my emotions were perhaps a little dulled. A few months before I started to taper, however, I began having a weird feeling in my left eye. I couldn't tell if it was moving at the same speed as my right, it was harder to focus, and sometimes felt dry. It was unlike any sensation I had ever experienced and it is quite hard to explain.  For this reason, as well as the feeling that it was now or never, I began the taper. It has been a year of tears. I cry  easily and often, I am hyper-sensitive to stimuli, and  have developed a strange swallowing problem where I swallow air and I feel as if there is an air bubble stuck in my throat. Additionally, when I am really sad or about to cry, I feel a sort of pain in my left arm, particularly strong near my left wrist. Does this seem strange? It makes me think my depression/withdrawal symptoms must be particularly bad in a part of my brain associated with feeling in my left lower arm.

 

I know it's the anti-depressant that has done this to me, but my doctor is suggesting that I get on Prozac because, "We have to treat depression aggressively, it should not go untreated." I am not sure what I should do. I am currently on 5 mg, and not really able to tolerate anything less.

 

Note: I am fascinated by TMS (Transcranial Magnetic Stimulation). It seems to be safe, pretty effective, and really help the brain heal. What are your thoughts? It is one of the few things that gives me hope. I have a friend who had terrible depression and he said after receiving treatment, his depression completely lifted. Do you think that it could have the same effect for withdrawal symptoms? I welcome your feedback. 

 

Xo,

Emily

[Narcissus]

Hello, Emilee.  I'm so sorry to hear of all the difficulty you've been having with Paxil, some of those symptoms sound very distressing.  

 

If the depression is from paxil withdrawal, and it sounds like it is, then I don't think its needs to be "treated aggressively" by prozac, whatever that really means.  Some people do "bridge" with prozac toward the end of their tapers, and some seem to find this helpful.  But then there are many who don't find the addition of prozac or any other drug to be helpful during withdrawal.  Whether you decide to do it or not, I would consider it as a last resort.  If you do decide to take the prozac it make sure that you're using the "bridge" method.  You can read about bridging with prozac here:

http://survivingantidepressants.org/index.php?/topic/1463-the-prozac-switch-or-bridging-with-prozac/#entry13616

 

A little more information about your taper would be really helpful.  How long have you been tapering (a year?) and at what rate?  Right now I would stay at 5 mgs until things begin to settle down and you're able to work out a new plan.  If you plan on sticking around for a bit, consider doing a short drug/taper history and putting in your signature.  You can follow these steps:

 

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

 

Oh, and I don't know anything about TMS but I'm sure someone here does.Welcome, and stay in touch!

[Altostrata]

Welcome, Emilee.

 

It sounds like you're having a rough time coming off Paxil. It might be a good idea to stop tapering, stay at 5mg for a while, and let your nervous system settle down.

 

You might also want to find another doctor, one who might know more about withdrawal syndrome and "bridging" with Prozac. See http://tinyurl.com/7cp8l8v

[Emilee]

Hi everyone!

 

So, I am not quite a success story yet because I have not gotten off my meds completely, but I am feeling so good I wanted to share. I am at 3.8 mgs, but I feel better than I felt at 10 mgs or even 20! I started TMS therapy about 4 weeks ago and it has made SUCH a difference. I wanted to share this with all of you because I think people commonly don't return to sites like these when they start feeling better and I want to offer some hope and perhaps a solution.

 

TMS therapy was approved by the FDA in 2008 to treat treatment-resistant depression. TMS stands for Transcranial Magnetic Stimulation. It is a non-invasive method which uses electromagnetic induction to induce weak electric currents in specific areas of the brain which are known to be associated with depression and anxiety. Unlike ECT, it has no side-effects and some studies even suggest that it can improve cognitive functioning and memory after treatment. 

 

It is covered by insurance, but it can be a big battle. They want you to have been on at least 4 or 5 different anti-depressants first before they will cover it and even then, they still could reject it. I have only been on Paxil and I wasn't willing to mess around with anti-depressants any longer, so I am paying out of pocket and am going to try to get reimbursed afterwards. I will update you on how that goes. But, plenty of people get it covered, so don't let my story deter you.

 

They had never had someone like me before. I didn't have depression before I went on Paxil, I went on it for chronic pain. Thus, when I began tapering and developed severe depression, I knew it was from Paxil's harmful effect on my brain. So, for me, I was really using TMS therapy to treat post-acute-withdrawal syndrome, not treatment-resistant depression. To give you some background, I tapered extremely slowly for over a year, but by the time I got below 4 mgs, I was a mess. At one point when I was at 2 mgs, I cried all day every day. This went on for weeks. Everything was so sad. I didn't want to do anything, the world was dark and I had obsessive thoughts of suicide. I felt guilty for being sad and felt worthless. I had to go back up to 5 mgs to be able to function, which I have been on since this past December. Ever since I started my treatment, I never think of suicide, I cry probably 10% as often, and I am much more excited about the future. I still have two weeks left and I haven't tapered all the way down, so I will have to keep you updated. 

 

But, I really think this could be something that helps some of you. At my treatment center, which is in Virginia, they have an 80% success rate and 67% full-remission rate. This means 80% of people have their depressive symptoms improve and 67% of people have their depression lift completely. There are no side effects. It does hurt a bit for the first week or two while your brain adjusts to the electric currents, but it's definitely worth it.

 

There is a book a woman wrote about her experience which I read a couple weeks ago called 3,000 pulses. I would read it if you are interested. It is a very well-written memoir of her journey from her suicide attempt to the merry-go-round of meds she tried, to finally being cured by TMS. 

 

I will keep you updated on the taper and whether or not I get reimbursed. 

 

Sending my love and support.

 

 

-Emily

 

[tezza]

Thanks for sharing and keep us posted!

[lucida]

Emily,  Thank you for sharing this.  You are right, people don't necessarily come back and report once they are feeling better, so thanks for doing so..... Best to you and to continued success....

[Altostrata]

It sounds like a very gradual taper (4mg to 3.8mg) is working for you. It could be this, rather than the TMS, that is minimizing your withdrawal symptoms.

 

It's only been a month, please let us know how you do over time.

[Rhiannon]

Yes, this is a new one for me, so I'd like to hear how it unfolds for you over time, if you have time to come back and post.

[WhoAmI]

Interesting. I would like to see how it goes, also. Thanks for letting us know!

[cmusic]

Has anyone checked out the validity of this? My life is ending. I'm losing everything and my family is suffering. I would try this if I thought there was any chance it would help at all. I am scared the benefits do not last without being out back on drugs.

[mammaP]

If my memory serves me well ( that would be a first, lol )  I saw a tv documentary about this treatment, or similar.

It was self administered and I remember thinking that it was like DIY Ect! It was reported in a positive way by

those who tried it, they all felt benefits from it. I think I'll search and see if I can find it. 

I hope you are still well Emily, it's always good to see when someone is getting better. 

[Emilee]

Hi everyone,

 

Well, I am now on only 1 mg of Paxil and still, the depression has not returned. It's been about 3 months since my last TMS treatment and I am still very stable emotionally. I am having some health issues still which are bothersome(a lot of stomach problems, dry eyes, etc) but I am not depressed and am better able to deal with these things now. I had these issues before TMS, just FYI.

 

It should be noted that I did not get reimbursed at all by my insurance company. But, everyone's situation is different. It was certainly worth the money in my case. I don't feel like Paxil ruined my life anymore. I have hope for the future, I don't feel worthless, and I don't feel so sad all the time.

 

CRmusic, I think you should definitely look into trying this and read the book I recommended. Before I received TMS therapy, I researched it a lot and it was one of the few things that gave me hope.There were so many positive testimonials and it has no side effects, literally. I think tapering slowly is crucial as well, but TMS can help the brain heal a lot faster so that you can start feeling good again.

 

Please let me know if you have any questions or concerns about it. 

 

All my best,

 

Emily

[Altostrata]

Emilee, please add to this topic http://survivingantidepressants.org/index.php?/topic/3957-tms-transcranial-magnetic-stimulation/

I'm sure many people will want to hear more about TMS.

[cmusic]

Thank you Emily.  I've been suffering from intense withdrawal from a number of meds for years and have a complicated history of being put on and pulled off things.  Right now I am incapacitated by anxiety and what amounts to trauma from this situation.  I get anxiety/terror over every thought, anything I have to do, it's intense hyper-alerting and burning throughout my body.  I endure it every day but I go to hysterical crying.  The emotional and physical pain are not letting up.

 

I tried to reinstate 5mg of Prozac and it didn't help but now I'm stuck on it.  I'm very scared of doctors and treatments, but my family is going down hard and I am losing everything.  I have a number of questions - as my situation is very screwed up.

 

I have been on and off benzos for years as well as antidepressants for over 12 years.  I finally decided to stop benzos altogether four months ago.  But I am afraid of the seizure risk with TMS.  I know it's low but I have muscle twitching all over my body and don't know if it's safe to do TMS.

 

I have severe withdrawal as I believe I'm in a 'kindled' state - I'm afraid with TMS that it will boost me up while it's going and then I will go into a withdrawal state again as the effects wear off.  Like your brain re-adapting again to an artificially high level of neurotransmitters and then having them abruptly drop off.  Is this the case or is there actually real healing that takes place?

 

I'm in such need of hope, I just worry this is no different than a very expensive 2 month course of an antidepressant.

 

What were your treatments like?  What did they tell you about the safety and longevity of the treatment?  Is it something you'll be going back for over and over?

[cmusic]

A few more questions - I typically see people being transitioned to an antidepressant after the treatment is over - to help maintain the patient.  I of course wouldn't want to take anything more than the low dose of Prozac I'm already on.  Did they push you to get back on drugs after the treatment?

 

And did you have anxiety or issues with it before paxil or during withdrawal?  I've always had anxiety and lack of confidence / shyness / lack of sense of self worth.  But I was always functional and now I'm a severe severe case bordering on agoraphobia.  I can't tell if it's antidepressant or benzo withdrawal or both, but it's brutal.  I read they can actually use this 'off label' on the right side of the brain for anxiety.  Did you hear anything about that?

 

Thanks again.

[Emilee]

Hi CRmusic,
 
I’m so sorry to hear about everything that you are going through. It’s so important to have hope and to not give up. I commend you for doing that.
 
 Let me see if I can answer some of your questions.
 
Firstly, sorry for saying that there are literally no side effects, you are right, seizures are a very rare side effect. Also, some people can get mild headaches from the treatment. But, the headaches are not long-lasting just an immediate result because the treatment can be a pretty uncomfortable at first. What I really meant to write was that it is free of systemic side effects.
 
I, or course, cannot tell you whether or not you are at risk of a seizure. Just know that it is less than a .1% risk. What I would do is find a doctor or clinic that performs TMS and have a consultation. The place I went for treatment had free consultations. They can assess your situation and see if it is right for you. It doesn’t work for everyone, but it has a higher success rate than anti-depressants without all of the systemic side effects and withdrawal.
 
Also, you don't need to be afraid of TMS affecting you like anti-depressants do in the way that it could "boost you up" and then put you into withdrawal once you stop. It doesn't work like that. The electro-magnetic waves they use in TMS stimulate the areas of the brain that are underactive in people with depression. Generally, if you start feeling better, then the effects will last. I guess they kind of reawaken neuropathways which can continue working on their own, without the constant stimulation provided by TMS. Some people have to have management treatments, maybe once a year, or maybe after they have a traumatic event happen, etc, but many do not. It's really meant to be a long-lasting, permanent treatment. I don't expect to have to go back for a treatment ever. But, I am so happy to know that it is there, just in case I slip into depression again. 
 
You are right about stimulating the right side of the brain for anxiety. I actually got this done. I don’t really understand how this works, but they can destimulate the part of the brain associated with anxiety. You can get a treatment done where for the first 30 minutes they will stimulate the area of the brain associated with depression and then the area associated with anxiety. It seemed to help. Although my depression was much worse than my anxiety, so it wasn’t as dramatic an outcome for me as was the change in my mood/crying spells.
 
They didn’t push me to get on drugs at all. I was very clear that I was trying to get off of Paxil and I even tapered a bit during my treatment. (Although they really prefer you not to do that so they can accurately assess how much the treatment has helped you, without adding a change of dose into the mix.)
 
I didn’t have depression or anxiety exactly before going on Paxil. I had a lot of tension and chronic pain issues. These physical ailments did cause me a lot of emotional distress, however. But, most people that get TMS done, have depression, some anxiety, before they went on the drugs, which makes sense since this is the reason most people are on these drugs. So, I wasn’t really a normal case in that regard.
 
Lastly, I just want to mention that the treatments did hurt a lot more than I expected, especially the first couple weeks. It feels like a really bad headache in a specific spot (where the waves are hitting your brain). It would go away as soon as the pulses stopped, but if you are very sensitive, this will probably be a bit scary at first. If you get a consultation, they can talk to you about it. You can take a pain reliever before you go in to help with it. It does get better as the treatment goes on and as you get used to it. 
 
Good luck and keep me updated.
 
Best,
Emily

[Emilee]

*Cmusic, I don't know why I read it as CRmusic. Sorry!

[cmusic]

Thanks for the info. I'll need to think about this. I have all the withdrawal symptoms on this site - extreme fear bordering on psychotic episodes, burning through my body, muscle spasms and hyper alerting. The cortisol / autonomic nervous system thing. The hysterical crying and hopelessness. And a trauma and fear of anything medical or psychiatric.

 

All that being said I want to believe this could help me. I worry because I'm four months off part time benzos after years of part and full time use - in addition to cold turkey withdrawals of Effexor and Prozac. My brain literally feels concussed. And I'm paranoid so worry about seizure threshold. And I worry about being 'kindled' - on and off stuff so much that I'm now severely sensitive and how this will affect me during and after the treatment if it wears off.

 

Reason I bring all this up is because I don't have the luxury of time. Every day I go to work and barely get by - have to hide extreme fear to the point of paralysis, physical symptoms, and crying. If I lose this job I won't be able to get another one and my children need health care. So if there's anything that could help and not cause further damage I need to consider it.

 

I may schedule a consult but would have a hard time trusting them unfortunately.

[Emilee]

You do have more severe symptoms than I did, although I had some of your same symptoms (hyper-sensitivity, hopelessness, hysterical crying). I didn't have the extreme fear or burning, though. Anyways, you have nothing to lose by scheduling a consultation. If you do decide to go forward with this, you do have to commit. The effects generally don't work for at least 4 weeks and you have to go five days a week. It's important that you find a place where you like the psychiatrist and the staff. Mine was really cool and although he wasn't very familiar with post-acute-withdrawal syndrome (obviously most aren't) he was open to it and didn't dismiss me.

 

I can only speak from my experience and since it seems like you have been dealing with these issues a lot longer than I have and you have had more severe symptoms, I don't want to presume I know what's best for you. But, it is possible it could help you. There are people who have been on meds, on and off, a bunch of different types, who it has helped.

 

Anyways, I wish you the best. Let me know if you have any further questions.

[Lexy]

Emilee

Can I ask how you are now?

[Fitby50]

Yes it would be good to know if Emilee is still doing good from the TMS a year ago.  And wonder if cmusic ever tried it?!??!   

[Meimeiquest]

My dr. does this...thought I should have it. I think the results can be quite dramatic, but the info I read said it had only shown benefits for a year, which concerned me because of the cost. In a flagrant violation of confidentiality standards, a secretary pointed out to me a man who was "totally shut down, could hardly get in the office" and now just looked moderately depressed to me, either in the midst of or after treatment. And once again, a treatment that does not get to the real cause...no one is symptomatic from not having their head magnetized...but finding the root cause is not always possible. I think it is sort of ECT-Lite.

[Altostrata]

There are many treatments supposed to be effective for "depression" -- a very poorly defined condition.

 

However, "depression" and withdrawal syndrome are entirely different. Withdrawal syndrome is not in any way the condition described at "depression," although one might feel "depressed" (whatever that is) in withdrawal.

 

If your nervous system has been dysregulated by withdrawal, it might respond in unpredictable ways to treatments that are supposed to rearrange the nervous system, and some of those ways may be very unpleasant.

[Emilee]

Hi everyone,

 

I am still doing much better after the TMS treatment and do still recommend it. There are a lot of people who only need it once and are fine and others that need management treatments. I got the treatment for withdrawal, not for depression and it helped so much. Feel free to message me  if you have any questions. Or ask them here. Xx

 

Best,

Emily

[Meimeiquest]

So glad this has worked out for you! Thank you so much for coming back to tell your story.

[Altostrata]

Good to hear you're feeling better, emilee.

 

Please add more detail to the TMS topic http://survivingantidepressants.org/index.php?/topic/3957-tms-transcranial-magnetic-stimulation/ such as What did you feel like before TMS? What was the treatment like? How did you feel after? How do you feel now?

 

This will make the information easier to find.

 

Also, do you feel you're ready for a success story here http://survivingantidepressants.org/index.php?/forum/28-recovery-success-stories/ ?

[HopeNeeded]

Emilee - Are you still around? My doctor really wants me to give this a try. Do you mind taking a look at my intro post and letting me know if you had any of the same symptoms? Also, I want to hear more about the pain that accompanies the treatment... How bad and for how long? Thanks so much!

[LisasLove]

This is an interesting thread. I have been going through withdrawal / neurotoxicity for almost 4 years now. All of the crazy psychiatric symptoms have left as well as most of the leg jerks but I still have insomnia (though a little better now), tinnitus, visual problems, and shocking-burning-pressure headaches. Basically, my Neurologist has diagnosed me with Neuralgia and Paresthesia caused by Zoloft withdrawal. 

 

Today, I saw a Neurosurgeon for a different problem that I have which I have also seen in the past that knows about my Zoloft withdrawal and he said that I should try Magnetic Resonance Therapy, or MRT. This Neurosurgeon works at Keck Medicine of USC and is against psychiatric drugs. He said that he has seen a lot of people with similar symptoms. He said I should go to the Brain Treatment Center which is an affiliate of the USC Center for Neurorestoration.

 

Emilee...How are you doing now.

[Fresh]

Emilee has not been on the site since 28 June , 2014.

 

Lisaslove , you may want to update your Introductions thread.