Totally Refractory - Anyone Else Find That Absolutely No Meds Help?!?

woodsy1

MyPTSD Pro
Anyone else find that Absolutely NO MEDS HELP?!?

This is my second bout with PTSD that was diagnosed as MDD the first time around. Both times, I tried practically every med in the book, and then some. Most of the them made me feel exponentially worse or had horrific side effects.

One tricyclic antidepressant gave me dementia-like experiences. For example I left a McDonald's in my very small town where I've spent some 15 years and had absolutely NO CLUE where in the heck I was. I could just as well have been in China as America! Lol. Another time on the same med I was driving home and about 5 miles from home was totally and completely lost. Scary stuff!

Most any med that messes with Serotonin just makes me batcrap crazy pent up and explosive (though I never act out the feeling). I tell my psych doctors this and they say, "Well, let's try this anyhow. Maybe this one will be different." Nope, worse! How can they be so ignorant?!?

Then there were meds that made my body feel 100 years old. I couldn't even walk 1/2 mile without being in excruciating pain. Ugh!

Only one med has ever really helped me, and that only for sleep. Mirtazapine. Did jack for my depression though.

It really compounds my despair when nothing helps. Makes me feel like I am particularly singled out for extreme suffering.

Anyone else relate? Ever find a solution?
 

Eagle3

MyPTSD Pro
I totally relate! I keep telling docs that mood stabilizers and anti-depressants just make things worse, and they never believe me until they see it for themselves. Drives me NUTS!!! After the last round of "lets try daily benzo's!" that nearly sent me to the hospital for ideation, I refuse to try any more psych drugs. I keep telling them its not a serotonin issue, but hey, I'm not a doc so what do I know? Its just the body and brain I've been living with my entire life, I can't POSSIBLY have any insight on such matters! 😒

I have found a few things that do work. Some natural herbs and supplements have helped as have lifestyle changes and holistic approaches to health, but my prescriptive go-to's have been Buspirone, Testosterone, and Low-Dose Naltrexone. Thanks to these medications I'm as stable as I can possibly be, given my medical and psychiatric conditions and physical circumstances. Sometimes we sensitives need to think outside the box a little, but most importantly is advocate for yourself. You know you best. Good luck finding something that works!
 

Sideways

Moderator
Anyone else relate? Ever find a solution?
Yeah. Spent years in hospital. Tried meds - stopped counting in the 20-somethings. Meds for depression. Meds for the side effects. Meds for stuff that came on the market a few years back, meds that came on the market in the 70s. Had some benefit from Parnate (a MAIO - too old for most pdocs to bother with). Even did ECT twice (2 different kinds). Currently using desvenlafaxine (variant of the venlafaxine that a lot of people here use) - that helps the very bottom of my mood, and if I increase I get about 8 weeks of mood lift. Seroquel XR (in a much reduced dose to what I used to use, slow release to bring down the side effects) to manage the thoughts and my DID.

There was a point where the meds I was taking were so strong, I was on amphetamines just to stay awake!

Haven't tried ketamine (keeping that in the back pocket), TMS (only because extended treatment isn't available to me), or CBD oil (not available to me). So, the list isn't completely done (which is a little reassuring).

Small amounts of certain meds help acute phases (valium for anxiety, instant seroquel if I'm unsafe and need to knock myself out for the afternoon).

The stuff that works? Takes longer. Takes work. And takes a helluva lot of practice. And they can't bottle that in to a pill.

Looking after my body right, because my brain is part of my body and the one doesn't work without the other. Good sleep hygiene (fanatical about that). Daily exercise (best anti-depressant currently on the market according to current research, especially for depression, which I'll probably never fully shake). Trauma work with someone who knows what they're doing. An Assistance Dog (life changed completely when I got him).

Also I wouldn't be where I am without the CBT, parts of DBT, and definitely (very definitely) ACT. They're probably what make my day to day function possible.

Basically, if there's good peer-reviewed evidence to back it up? I try and stay open-minded about my options.

My current mental health situation is the cumulation of years of trauma, so it makes sense it's gonna take a while to turn that around. But it can be turned around - and that's the bit to hold on to.
 

woodsy1

MyPTSD Pro
I totally relate! I keep telling docs that mood stabilizers and anti-depressants just make things worse, and they never believe me until they see it for themselves. Drives me NUTS!!! After the last round of "lets try daily benzo's!" that nearly sent me to the hospital for ideation, I refuse to try any more psych drugs. I keep telling them its not a serotonin issue, but hey, I'm not a doc so what do I know? Its just the body and brain I've been living with my entire life, I can't POSSIBLY have any insight on such matters! 😒

I have found a few things that do work. Some natural herbs and supplements have helped as have lifestyle changes and holistic approaches to health, but my prescriptive go-to's have been Buspirone, Testosterone, and Low-Dose Naltrexone. Thanks to these medications I'm as stable as I can possibly be, given my medical and psychiatric conditions and physical circumstances. Sometimes we sensitives need to think outside the box a little, but most importantly is advocate for yourself. You know you best. Good luck finding something that works!
Thanks for the reply and the chuckle about you not knowing anything about your body you've lived in all your life.😁

I'm glad you found some things that work for you. Buspirone does nothing for me. VA won't do testosterone or LDN.

Right now I'm taking some supplements and otc lithium orotate. Helps a little.

I have my doubts about the chemical imbalance theory of mental health issues being a one size fits all theory. There are plenty of mental health experts who also have doubts about it. Maybe meds help some people somewhat sometimes, but definitely not all people all the time.

I hope you have as good a day as possible.
Woodsy
 

woodsy1

MyPTSD Pro
Yeah. Spent years in hospital. Tried meds - stopped counting in the 20-somethings. Meds for depression. Meds for the side effects. Meds for stuff that came on the market a few years back, meds that came on the market in the 70s. Had some benefit from Parnate (a MAIO - too old for most pdocs to bother with). Even did ECT twice (2 different kinds). Currently using desvenlafaxine (variant of the venlafaxine that a lot of people here use) - that helps the very bottom of my mood, and if I increase I get about 8 weeks of mood lift. Seroquel XR (in a much reduced dose to what I used to use, slow release to bring down the side effects) to manage the thoughts and my DID.

There was a point where the meds I was taking were so strong, I was on amphetamines just to stay awake!

Haven't tried ketamine (keeping that in the back pocket), TMS (only because extended treatment isn't available to me), or CBD oil (not available to me). So, the list isn't completely done (which is a little reassuring).

Small amounts of certain meds help acute phases (valium for anxiety, instant seroquel if I'm unsafe and need to knock myself out for the afternoon).

The stuff that works? Takes longer. Takes work. And takes a helluva lot of practice. And they can't bottle that in to a pill.

Looking after my body right, because my brain is part of my body and the one doesn't work without the other. Good sleep hygiene (fanatical about that). Daily exercise (best anti-depressant currently on the market according to current research, especially for depression, which I'll probably never fully shake). Trauma work with someone who knows what they're doing. An Assistance Dog (life changed completely when I got him).

Also I wouldn't be where I am without the CBT, parts of DBT, and definitely (very definitely) ACT. They're probably what make my day to day function possible.

Basically, if there's good peer-reviewed evidence to back it up? I try and stay open-minded about my options.

My current mental health situation is the cumulation of years of trauma, so it makes sense it's gonna take a while to turn that around. But it can be turned around - and that's the bit to hold on to.
Thanks @Sideways,

I apologise that I did not see your response until just now. I appreciate your feedback.

Like yourself I have tried countless numbers of the "standard" meds and even many off label approaches. Mirtazapine helps me sleep and that's about it. I can tell some interesting stories about my experience on some of the other drugs. Lol.

I just got a VA community care referral for TMS/rTMS. I've heard some positive reports about this, so we'll see.

I just discovered that the VA has approved Eskatamine treatment. I may look into that.

I tried the CBD route and the THC route. Didn't really do much for me. Well the THC ramped up my anxiety, but that's about it.

I understand the VA may soon approve MDMA psychotherapy. Supposedly this is surprisingly effective due to the various chemical systems involved and the facilitation of extinguishing the fear response related to our trauma. I'd be interested in giving this a go.

I've recently begun lifting weights at home and walking 2-5 miles most days. It does seem to help some, but not enough to stop me from seeking other options to add in.

I'm seeing a therapist. We're currently working on addressing triggers via diaphramatic breathing. Such does calm me a little. We'll see if that effect is ever enough to make any real difference. I don't know what else my therapist will try. We'll see as we go.

Again, thanks so much for your reply. I appreciate you!

Have as good a day as you can,
Woodsy1
 

RussellSue

Not Active
Anyone else relate? Ever find a solution?

Yes, I also relate. I spent 10+ years in therapy but refusing daily pills because they made things worse.

I hit a rough patch about 7 years ago and tried Lithium for depression since I'd had no luck with antidepressants. It helped and I stayed on it on a regular, therapeutic dose until it started effecting my health. I have had trouble getting off of it because no doctors wanted to prescribe the lower doses I needed to ween off and then life things happened, but I have not been at a therapeutic blood level in about a year and I don't believe it has been doing much of anything since last year, as I noticed a difference when first lowering my dose but not since then. I plan to start on my first week completely Lithium-free, next week.

I am on gabapentin (Neurontin) for pain at present and I feel like it helps with my anxiety but it also has made it a lot more likely for me to get mouthy when people are rude to me - say at the grocery store - which often concerns me. I am hoping to get off of it soon, since the worst patch with my injuries seems to have passed.

That said, I make sure to get regular cardio exercise, eat a lot of brain foods and try to avoid foods which Dr. Daniel Amen deems neurotoxic, stay on a routine, learn new things all the time, and I accept that I have limitations. If something comes up that really freaks me out and I cannot get over it with breathing and exercise, I take valerian herb for immediate relief. The cardio has really helped with both depression and anxiety and the stronger I feel, the less likely I feel that I am in danger in any way. EMDR has been introduced recently and it is really helping with triggers. I feel pretty confident that my brain has been slowly healing, and at this point, I don't trigger easily and am no longer fighting consistent high levels of depression, anxiety or insomnia.
 

woodsy1

MyPTSD Pro
Yes, I also relate. I spent 10+ years in therapy but refusing daily pills because they made things worse.

I hit a rough patch about 7 years ago and tried Lithium for depression since I'd had no luck with antidepressants. It helped and I stayed on it on a regular, therapeutic dose until it started effecting my health. I have had trouble getting off of it because no doctors wanted to prescribe the lower doses I needed to ween off and then life things happened, but I have not been at a therapeutic blood level in about a year and I don't believe it has been doing much of anything since last year, as I noticed a difference when first lowering my dose but not since then. I plan to start on my first week completely Lithium-free, next week.

I am on gabapentin (Neurontin) for pain at present and I feel like it helps with my anxiety but it also has made it a lot more likely for me to get mouthy when people are rude to me - say at the grocery store - which often concerns me. I am hoping to get off of it soon, since the worst patch with my injuries seems to have passed.

That said, I make sure to get regular cardio exercise, eat a lot of brain foods and try to avoid foods which Dr. Daniel Amen deems neurotoxic, stay on a routine, learn new things all the time, and I accept that I have limitations. If something comes up that really freaks me out and I cannot get over it with breathing and exercise, I take valerian herb for immediate relief. The cardio has really helped with both depression and anxiety and the stronger I feel, the less likely I feel that I am in danger in any way. EMDR has been introduced recently and it is really helping with triggers. I feel pretty confident that my brain has been slowly healing, and at this point, I don't trigger easily and am no longer fighting consistent high levels of depression, anxiety or insomnia.
Hiya @RussellSue,

Happy holidays to you and yours. You'll have to post and tell us how your hiking adventure went! I went for a 4 mile walk yesterday. Headed off to mom's for dinner this afternoon.

I'm sorry you can relate! Sounds like you are finding some healthy and effective ways to move forward. That's awesome!

Wow! Taking the big final drop off Lithium during the Holidays season, eh? You are more brave than I. I'm holding steady on my benzo taper at least another week. Then I'll revaluate and maybe drop another 5%. I recently realized that I'm not in any hurry!

I can totally relate to meds having an undesirable effect like Gabapentin does on you. Buproprione was like crack for me. Lol. It made me very aggressive and lead me toward risk taking behavior. Very unlike me. Besides, it didn't really help, so I quit that one.

We should start up a discussion about our crazy med stories. I've got a couple!

I am glad to hear that you are doing well. I hope today proves to be a good day for you.

Woodsy1
 
For 15 years I tried every SSRI and SNRI there was, including a couple that have since been removed from the market. Zero helped after the first couple of months and all had horrendous side effects. What actually helped me was doing actual trauma therapy. I went off meds pretty soon after I started, and stayed off for a couple of years. I'm on Tegretol right now, which has had no side effects for me.
 

woodsy1

MyPTSD Pro
For 15 years I tried every SSRI and SNRI there was, including a couple that have since been removed from the market. Zero helped after the first couple of months and all had horrendous side effects. What actually helped me was doing actual trauma therapy. I went off meds pretty soon after I started, and stayed off for a couple of years. I'm on Tegretol right now, which has had no side effects for me.
I AM NOT ALONE!!! 😆

Thanks for sharing.
Woodsy1
 

RussellSue

Not Active
You'll have to post and tell us how your hiking adventure went! I went for a 4 mile walk yesterday.
The hike was good but slow (it took an hour) and short in length at 1.7 miles. I am not the wild mountain woman I used to be, that is for sure. But considering where I was at a year ago with two newly torn hip labrums, hip arthritis, dysplasia and impingement I was just finding out about, a compressed nerve and tendinitis, I am not about to complain. I still have most of that, but I am getting around a lot better, now. I was very near using a walker to get to work and was using a cane regularly, last November. I am getting stronger and walking a lot better than I was.

Wow! Taking the big final drop off Lithium during the Holidays season, eh? You are more brave than I. I'm holding steady on my benzo taper at least another week. Then I'll revaluate and maybe drop another 5%. I recently realized that I'm not in any hurry!
Well, I made the decision to keep right on going primarily to avoid any more mishaps with family (my sister in particular). Rather than convincing myself that the detox wasn't going to keep me from thinking straight at some future date, I figured I would just tell her that I would probably not be human again until mid-December (and so we should keep our contact minimal for now), and that way I get this mess over with minimal hurt feelings (I hope). My birthday is right before Christmas, too, so this time of year is hard. I think that I will be alright by the time my birthday hits.

Plus, I DO NOT want to do it after I get a job. I want to ensure that I keep the new job and not sabotage myself. And I just want it done with. It's been a really long haul.


We should start up a discussion about our crazy med stories. I've got a couple!
They sure keep our lives interesting! You ought to. I've had my fair share, too.

am glad to hear that you are doing well. I hope today proves to be a good day for you.

Thanks! Enjoy dinner with your mom.
 

woodsy1

MyPTSD Pro
The hike was good but slow (it took an hour) and short in length at 1.7 miles. I am not the wild mountain woman I used to be, that is for sure. But considering where I was at a year ago with two newly torn hip labrums, hip arthritis, dysplasia and impingement I was just finding out about, a compressed nerve and tendinitis, I am not about to complain. I still have most of that, but I am getting around a lot better, now. I was very near using a walker to get to work and was using a cane regularly, last November. I am getting stronger and walking a lot better than I was.


Well, I made the decision to keep right on going primarily to avoid any more mishaps with family (my sister in particular). Rather than convincing myself that the detox wasn't going to keep me from thinking straight at some future date, I figured I would just tell her that I would probably not be human again until mid-December (and so we should keep our contact minimal for now), and that way I get this mess over with minimal hurt feelings (I hope). My birthday is right before Christmas, too, so this time of year is hard. I think that I will be alright by the time my birthday hits.

Plus, I DO NOT want to do it after I get a job. I want to ensure that I keep the new job and not sabotage myself. And I just want it done with. It's been a really long haul.



They sure keep our lives interesting! You ought to. I've had my fair share, too.



Thanks! Enjoy dinner with your mom.
On my way out the door. Chat ya soon. 😁
 
Anyone else find that Absolutely NO MEDS HELP?!?

This is my second bout with PTSD that was diagnosed as MDD the first time around. Both times, I tried practically every med in the book, and then some. Most of the them made me feel exponentially worse or had horrific side effects.

One tricyclic antidepressant gave me dementia-like experiences. For example I left a McDonald's in my very small town where I've spent some 15 years and had absolutely NO CLUE where in the heck I was. I could just as well have been in China as America! Lol. Another time on the same med I was driving home and about 5 miles from home was totally and completely lost. Scary stuff!

Most any med that messes with Serotonin just makes me batcrap crazy pent up and explosive (though I never act out the feeling). I tell my psych doctors this and they say, "Well, let's try this anyhow. Maybe this one will be different." Nope, worse! How can they be so ignorant?!?

Then there were meds that made my body feel 100 years old. I couldn't even walk 1/2 mile without being in excruciating pain. Ugh!

Only one med has ever really helped me, and that only for sleep. Mirtazapine. Did jack for my depression though.

It really compounds my despair when nothing helps. Makes me feel like I am particularly singled out for extreme suffering.

Anyone else relate? Ever find a solution?
YES!

Relate so much to feeling like 100 years old. I used to hike extensively, could no longer join friends on hikes and they thought I was just blowing them off.

Meds that made driving feel like I was about to fall off a cliff, instead of it feeling natural like breathing.

Meds that made my heart feel both squeezed tight and intensely freezing.

Meds that made my mouth so dry no one could understand what I said.

Meds that made me sleep so much I went from straight A's to Flunking out.

If it had been simple like shedding hair or excessive sweating, fine.
But the extent of some were so bad I felt my heart was going to explode right out of my chest.


These day's I rely on Lemon Balm, Passion flower, L-Betatheatide (Sp?), Melatonin, and THC/CBD is my daily routine now.
Finally feel more similar to how I felt as a child...well... at least as it relates to clarity, less stress, and that hopeful childhood awe.
Simply breathing in the air is less painful on my chest now. I do not mean to discredit modern medicine in general, as I do observe OTHER people benefit from their Rx.
But, after so many outrageous bodily failures, I just had to try something different for myself.
 
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