Thoughtfultoo: Very thankful for these boards

[Thoughtfultoo]

You could call me a psychotropic veteran. I hope soon to become a recovering, zero-tolerance advocate against most things psychotropic. My family history of depression is that it was really tough; heartbreaking in fact; so much so that I was wary of my own mental health and open to the use of SSRIs when they appeared in the early 1990s. I started with Prozac and ran through the gamut of similar meds - so much so that I can't bring myself to bore you with a detailed description. Suffice it to saw that no matter what the SSRI or SNRI or whatever (even some Klonopin, Buspar, etc.), they would work great for a little while, then not so much at all. Psychiatrists, being how they were trained, upon my complaints would immediately throw higher doses at me or switch to a new miracle med. Every dose increase was followed by even more anxiety, bruxism, hyperactivity, GI problems, etc. New drugs soon became not so new and I floundered on. 

 

After decades of this, last fall I was diagnosed not with depression or anxiety but with what has apparently become the latest buzz illness: bipolar. Ah, Bipolar II even! Eureka! Still being somewhat naive, gullible, and insecure, I started a new class of drugs: Lamotrigine, Gabapentin accompanied by a longtime standard, Buspar. The last six months have brought no more relief then what I got from SSRIs. It has brought weight gain, such swelling of my legs that I couldn't sleep, and four unexplained and ridiculously painful urinary tract infections - abacterial infections that mimicked bacterial ones but that couldn't be relieved with antibiotics.

 

Finally, I put my scientific, medical and research hats on and figured out that Gapapentin was causing the leg edema and weight gain. Slowly I tapered that off. Next, I learned that Lamotrigine can cause the abacterial UTIs/bladder spasms in women my age. My GP didn't catch it; neither did the prescriber. Of course, the prescriber doesn't even want to consider the possibility of such a side effect. UGH! I am now down from 200mgs of Lamotrigine to 25mg, with the vaginitis/bladder pain diminishing along with the med. I'm seeing a urologist on Monday and hope to confirm my own diagnosis: Lamotrigine (and possibly Gabapentin as well) were what caused a miserable last six months of vaginitis, mimicked UTIs, etc.

 

By chance, I moved to a new city recently and found a new psychologist who turned out to be as skeptical and disgusted by the pharmaceutical industry as I am. She actually laughed at the bipolar diagnosis ("You're NOT bipolar!!!"); then I did too. Without her encouragement and support I wouldn't have found the internal strength to defy my prescriber's advice and slowly get off this stuff. I might have been worried that my new psychologist was an anomaly, but apparently not. There are many psychologists and psychiatrists out there, with small voices in the wind, beating drums about the dangers of meds that have undetermined etiologies; chronic side effects and no definitive studies of their long-term effects. I see a light on the horizon for the first time.

 

So far, I'm doing pretty well. I have to stay vigilant about self-care, which is against my nature. Daily, I must meditate to increase the Alpha waves destroyed by such longterm use of antidepressants. I have to eat healthily, exercise A LOT and not drink alcohol. I have a lot of anger at what the pharmaceutical industry has done and continues to do in a country that used to hold companies accountable, but I'm planning on channeling that anger to where it will do some good. It took me a long time, but I'm finally accepting and acknowledging that when the FDA-listed possible side effects of a medication FOR depression or FOR anxiety IS depression and/or anxiety; SOMETHING MUST BE WRONG! Having worked in the pharmaceutical industry for many years, and having seen and learned things I can't unsee, I carry some guilt; but that, too, is motivating.

 

I am very happy to have found these forums and this site. I would appreciate any encouragement and really hope I can keep this drive off these ridiculous medications strong and get through these last bits of tapering. Thank you for "listening."

[Altostrata]

Welcome, Thoughtful.

 

Yes, you have arrived at conclusions shared by many of us, with similar experiences.

 

What drugs are you on now? Did you get any withdrawal symptoms from reducing your drugs? What is your current symptom pattern?

 

Here are our Tips for tapering off Lamictal (lamotrigine)

 

Depending on how you're feeling, you may want to reduce that last bit of lamotrigine very slowly.

 

To help us out, see these instructions Please put your drug and withdrawal history in your signature

[Thoughtfultoo]

Nice to meet you, Altrostrata, and thanks for the welcome. I have to thank you for you devotion to this effort - I have already learned quite a bit from you.

 

I am down to 12.5mg of Lamotrigine, and 20mg of Buspirone. I have absolutely gotten withdrawal symptoms as I taper down: headaches (diminishing), brain zaps (diminishing), insomnia (getting through it....), increased anxiety and various mood states throughout the day are the primary ones. Oh, and lately: painful and confusing abacterial UTIs/vaginitis/bladder spasms - that I'm almost completely convinced were caused by the Lamotrigine and/or Gabapentin.

 

A typical day is to wake up anxious. I meditate (10 or so minutes) using Insight Timer (in case it hasn't been mentioned before, this is a fabulous free meditation application that I find invaluable daily) then get on with the day. In the early afternoon I start to feel anxious and panicky, so I meditate again for about 15 minutes. That lifts me out of my anxiety and I get on with the day. At night I meditate again right before sleep for anywhere from 10 to 30 minutes so I can sleep through the night.

 

I have to throw in what I'm working on with my psychologist because for the first time I'm allowing someone to tap into my right brain to get me through this withdrawal and treat my intrinsic depression and PTSD. I've tried to withdraw many times before but the symptoms were awful and frightening; I never got through it. 

 

The psychologist is using neurofeedback and Eye Movement Desensitization and Reprocessing (EMDR). I'm told that getting through the symptoms of withdrawal will take an average of 90 days once I take the last med. I've also been told that longterm use of antidepressants has been shown in clinical trials to depress the brain's Alpha waves (among many other things) - the waves that calm you and provide a sense of serenity and peace - hence my anxiety. It has also been suggested that many of the physical problems I've experienced over the years were caused by the psychotropic drugs I was on. I'm sickened that I trusted my psychiatrists over the years - none of them brought any of this up. NONE.

 

The way I deal mentally with the possible damage done by long term use of psychotropic drugs is knowing about the wonderful neuroplasticity of the brain. I can get through this, gol dang it!

 

The neurofeedback and EMDR subconsciously work on these depressed Alpha waves, among other things, and if administered correctly and over time they can heal depression, anxiety, PTSD, etc. Meditation also raises depressed Alpha waves, which is why I've been using it A LOT. Call me extremely skeptical, but these modalities are beginning to work to get me through withdrawal.  I wasn't sleeping more then three hours a night, and now I'm getting seven or eight, so something's working and it's not just a placebo effect. It's even empowering to know that after I take that last dose, it will take around three months to be free of withdrawal symptoms. I sure hope that's true!

 

At the same time I'm going through withdrawal, when I can I'm also researching everything I'm being told using credible medical journals to make sure I'm not just being sold a bill of goods. I tried neurofeedback once before and the practitioner, I now realize, had no idea what she was doing; but this time, I think it's actually doing something positive.

 

Thanks for the tip about the final stages of getting off Lamotrigine. I thought I put my medication history in my signature but somehow it landed somewhere else, so I'll try again (you'd be amazed at how I can overthink directions!).   

[Altostrata]

1 hour ago, Thoughtfultoo said:

I am down to 12.5mg of Lamotrigine, and 20mg of Buspirone. I have absolutely gotten withdrawal symptoms as I taper down: headaches (diminishing), brain zaps (diminishing), insomnia (getting through it....), increased anxiety and various mood states throughout the day are the primary ones.

 

Given you've been having withdrawal symptoms, I would give your nervous system a rest now for a good while, at least a couple of months. More tapering could be too much for it. Your symptoms may fluctuation but, hopefully, gradually fade. Please let us know how you're doing.

 

Many people do better with fish oil and magnesium supplements, see
http://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

 

http://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

A lot of people find them helpful. Try a little bit of one at a time to see how it affects you.

[JJ33]

Welcome to the forums.

 

3 hours ago, Thoughtfultoo said:

I've also been told that longterm use of antidepressants has been shown in clinical trials to depress the brain's Alpha waves (among many other things)

 

I hadn't heard of this effect.  Are there other techniques you use to raise Alpha Waves?  You mention neurofeedback and EMDR, but I don't know what the evidence is for those.

 

Meditation is great, though I have a hard time doing it.  I'd be curious what insights you've gleaned from working in the industry, I suspect we've been sold on the idea of drugs capabilities far beyond their actual design.

[Thoughtfultoo]

Hello JJ33,

 

Thanks for your response. Here are some articles that talk about Neurofeedback and EMDR:

 

Neurofeedback:

https://clinicaltrials.gov/ct2/show/NCT03279913

 

http://www.mdmag.com/journals/md-magazine-neurology/2018/march-2018/neurofeedback-therapy-improves-behavior-outcomes-in-patients-with-adhd

 

https://www.sciencedaily.com/releases/2017/09/170904093440.htm

 

EMDR

https://www.frontiersin.org/articles/10.3389/fpsyg.2017.01935/full

 

http://www.clinicalneuropsychiatry.org/pdf/2-paper-Clinical17-5.pdf

 

Other things that work for me are unquestionably exercise (walking, elliptical, horseback riding, weights, biking) some form of which is done daily without fail. I eat as healthily as possible and buy organic as much as I can. I love animals and want to be around them a lot, so I am. If something I'm reading or looking at online starts to upset or bother me, I stop. It took a while for me to even admit this was a problem.

 

Working in the pharmaceutical industry when I was quite young was a shock. I saw and learned things I can't unsee and I understand that the same practices are going on today. Many of the companies are corrupt and trying to skirt the FDA and the law as much as they can. Many of the people that work in this outrageously overpriced industry are as cold, self-absorbed and unpleasant as I've ever seen. Physician's ability to prescribe without appropriate oversight and the willingness of many of them to be bought is sickening. In the area of psychotropic drugs, the corruption and hiding of negative clinical trial results is appalling. I saw it; I experienced it: the expensive junkets for CME credits to Aspen et al; the prostitutes brought in for entertainment; the lies about patient morbidities and clinical trials; the half-accurate published abstracts and the greed. I hope to write a book someday.

 

 

[JJ33]

What could there possibly be online that would bother anyone? 🙂.

 

Thanks for the articles.  Interesting hypothesis about EMDR treatment—so it takes the hyperarousal out of the amygdala and hippocampus allowing the brain to process it.  Fascinating if true.

 

Quite the portrait of the pharmaceutical industry.  Lack of oversight around prescribers has always bothered me.  I believe people have good intentions, but when you set up a system where a lot of money can be made with no accountability you are just asking for trouble.

[Thoughtfultoo]

I could not agree with you more. And yes, the hyperaroused amygdala and hippocampus are subdued. The process takes time and effort and is in its infancy, but clinical trials are being done. Personally, since incorporating these modalities I'm starting to sleep more then three hours a night; everything spiked once I went off of Effexor and I was exhausted. Very hopeful now!

[Thoughtfultoo]

Thought I would update with a summary of a recent visit to a urologist. I saw the urologist for an opinion about recent abacterial UTIs that coincided with the Lamictal and Gabapentin I started last fall.

 

I prepared a written summary of my recent history as described in previous posts. I do this so everything is completely covered and chronological. Most doctors greatly appreciate this and it saves me from having to repeat things over and over in one office visit.

 

I specifically asked the doc's assistant to make sure she read the summary. A half an hour late, the doc enters the exam room and asks me to tell her why I'm there. I asked her: didn't you read the summary I prepared - I gave it to your assistant. The doc then claims her assistant may have had it but now it was lost. Yeah, right. 

 

Well, red flags are starting to fly. I pull out my copy of the history and ask her to read it in front of me. At this point, as she reads a smirk begins to appear on her young, hip-doctor face. She announces that none of her patients have had trouble with Gabapentin. I point out the case studies I'd found, to which she replied: Well, you can find case studies that show something caused a third eye in the middle of a forehead, that doesn't mean it happened. I can feel myself getting a bit frustrated. The case studies I'd provided were from credible medical journals and the NIH website.

 

Next, I talk about more case studies, even stronger then the ones for Gaba, for Lamotrigine. My guess is she has no idea what the side effects of Lamotrigine or Gaba regarding bladder spasm issues in women my age were, but she's not going to acknowledge that there may be any relationship whatsoever. There's some pride at work here.

 

She tells me my UTI symptoms could be a lack of estrogen. I point out that I've been doing the menopausal thing for years - why would these issues suddenly appear? Why, now that I'm off Gaba and almost off Lamotrigine are the symptoms diminishing? No response. She's then much more interested in whether I'm OK going off these medications and by the way - who is supervising me (ie: you're may be losing your mind soon, if not already).

 

I now let her know that I know she's the doc (need to stroke some aroused ego here) but that I too have a strong medical background (which was listed on my intro patient sheet) and have spent a lifetime doing medical and health-related research. I pose this question to her: if antidepressants are so effective, then why since 1987 when they came on the market have mental health problems exploded? Why have I been told to try so many, because they all eventually fail me? Why does clinical research show that chronic use of psychotropics can lead to MORE depression and anxiety? Her response: hmmmm, interesting.

 

Then she announces exam time. Ugh.

 

The good news is, she found nothing wrong - no masses, no strictures, nothing. She says she's not worried and doesn't need to do a followup. Then she tells me I'm very "tight" and I should just relax. This, after having an exam I hate when I'm already not thrilled I had been condescended to and smirked at. No respect. None.

 

I'm continuing on with my steady, slow WD because she gave me no reason not too. After this annoying experience, for half a day I again had self-doubt about whether I should be worried I'm even doing this - but this lasted less time then it had the last time I doubted myself. I remembered my highly competent psychologist who is all for getting off this stuff. I remembered all the people on these boards going through the same things and in many instances who have made it just fine to the other side. I remembered all the doctors who can't possibly know the adverse affects of all medications (let alone psychotropics) and had too much ego involved to admit it. I persevered.

 

And BTW, Altostrata, I'm about to hop on an airplane for a weekend trip. Always an anxiety-provoker (went off a runway once and things were very dicey), I could feel my fears grabbing control and the insomnia kicked in. Following your advice, on Monday I started more fish oil - and today, Thursday, I can feel the lifting of anxiety and ruminations. Thank you so much for the spot on advice!