Mental Health TRMDD X 21+ years. Tried EVERYTHING it seems.

[dysthymicdiva94]

Hey everyone....never posted in a forum but I'll try and keep this brief.

• Diagnosed with MDD about 8 months after the birth of my daughter
• NOT PPD as I bonded well with her and was taking great care of both my children (son was 1 1/2 when she was born)
• sertraline X 18 months then it quit working for no apparent reason
• have tried multiple types of antidepressants, antipsychotics, atypical antipsychotics all with little to no effect or untolerable side effects (psychiatrist believes I am a "slow metabolizer" but have not had the genetic testing to confirm)
• about 14 years ago did a course of ECT that helped marginally and temporarily with mood but had DISASTEROUS side effects. I remember nothing of the weeks surrounding the treatment, and now have a deteriorating memory condition like some kind of conversion disorder. Wiped years of my memory from before treatment (I no longer remember years of my children growing up) and I now have trouble with short term memory converting into long term memory unless it is something I do repeatedly within weeks. I have met my husband's co-workers multiple times at social events, yet the next time I meet them, for me, it's like the first time (they must all think I'm a complete airhead by now lol). I also get lost in and around the newer parts of the city I have lived in my whole life, as I can't retain any new info (thank God for GPS!)
• at one point I wanted off ALL the meds as I didn't even know who I was anymore. For this, my psychiatrist said I had to be admitted for "legal and ethical reasons" presumably in case I crashed and tried to commit suicide at home, lest my husband had to deal with it. Upon admission, with extreme anxiety and panic attacks, dealing with withdrawal of multiple meds, my delusional roommate that just got out of observation decided I was the brunt of all her issues and attacked me trying to kill me. Needless to say I was discharged early and detoxed in the relative safety of my own home.
• About 2 years ago applied for the deep brain stimulation trials in Toronto but was declined for the study as I take narcotic pain medication for a work related back injury where I herniated 3 lumbar discs and have permanent spinal cord damage, intractable sciatica, and neurological issues throughout the lower half of my body. Apparently they need a "clean trial" and will not accept anyone on narcotics or using "street drugs".
• Was referred to the TMS clinic in Toronto but was unable to afford the financial and logistic implications of driving there daily (live about 200km away), being off work, and paying ~$45 daily for parking (actual treatment costs were covered by Pharm.Co. that is involved in the study). I now know in hindsight that I could not have driven home post-treatment anyhow.
• Lucky for me, a TMS clinic re-opened clinical trials in my home town! Last summer completed 28 sessions (more than usual 20) as I only began to show response on my 18th session (and then the equipment malfunctioned - on someone else, not me). several weeks later when repaired I finished 10 more sessions. My Hamilton Depression scores went from 22 to 4, if that is any indication of the response I had. It was overwhelming to say the least - after 20+ years it was like someone turned the lights and colours back on. The dark, negative and suicidal thoughts disappeared for the first time - entirely! It was a huge adjustment at first, learning to cope with feelings after being numb for so many years and sleep-walking through life. I felt so much guilt for all the wasted years- even though this treatment was out of my grasp during that time.
• The effect has not been permanent though, as I feel myself sliding ever so slowly into a relapse. Perhaps a yearly boost is what I need, until DBS is more widely available. Currently only on meds to help with sleep.

Just wanted to let all those out there just hangin' on, or merely coping, that there IS hope. You will find something that works for you. I had so many exhausted days when I just couldn't do it any more. Ask for help. Talk to someone. Anyone. There is a solution....it just may take time to find it. And hopefully it won't take 21+ years!

Best of luck! And if anyone has any questions - feel free to ask

 

[AlphaMethylPhenyl]

Hey,

I think it's really great that you've opened up about this. I can imagine it might make you uneasy, especially considering that it's your first forum post.

Sertraline (Zoloft) is an interesting one. I've heard that it does tend to lose its effect. You must have tried a lot of different medications to be referred to ECT, no? Would you mind telling us what you've tried? The other moderators and myself do our best to create a friendly, open atmosphere.

I honestly can't imagine if something similar happened to me. I don't have children, but it sounds like you love them with all your heart. To lose memory of them growing up is surely very painful, I'd wager. If these people write you off as an airhead because a legitimate neurological/psychological malady, then, in my opinion, they aren't really worth the time getting to know anyway. I would urge you to hold fast to the idea that we don't have to lower ourselves, especially for things out of our control.

Right now it's probably good to have the GPS. And it sounds like you're trying very hard to cultivate your memory. Again, I've never been through ECT, but I do know that the brain is remarkably adaptive if we use it right. That is to say, there are techniques one can practice to improve cognitive skills, such as memory. Here are a few links I found after a minute or so of searching: http://www.apa.org/ed/precollege/psn/2013/09/learning-secrets.aspx, https://www.psychologytoday.com/blog/happiness-in-world/200911/eight-ways-remember-anything.

A large portion of people on psych meds experience the strong urge to get off their medication, so you're definitely not alone there! I think it's reasonable to assume that your psychiatrist had your best interest in mind in requesting your admission. That said, it sounds like you were not only in terrible condition when admitted, but that you may have incurred some real trauma via your roommate. I'm curious as to whether or not she may have been provoked, but I'm just spit-balling here. There's no rational reason for assaulting another human being. I in fact know a little about this, as I was assaulted during one of my hospital stays, and then harassed and egged on by the individual until I left. What made it worse is that his behavior up to that point was perfectly normal, and initially no one believed that he actually did it! Amazing world we live in.

And serious physical issues to boot. So you take your pain meds as prescribed? I'm assuming you do.

It's just outrageous that we oftentimes don't have access to the treatment we need to be healthy. I'm so glad that you began feeling better, truly. Guilt tends to grab us, I think it's okay in moderation. It's okay if it drives us to be better people, as opposed to devouring our health.

Do you think that you may need meds that aren't just for sleep? I'm just saying because for a lot of people, insomnia is due to another underlying condition, but of course not always.

Good advice

Be Well