years out, no hope nor help in sight?!

My husband is more than 3.5 years off, and can't do more than shuffle around the house and lie in bed all day watching tv. He's still suffering terribly. He can't keep going like this. Completely losing hope of recovery.

 

Is there really no hope? People still on these boards several years past where we are now don't make it sound like it. Did it get any better for you? Did you reach a point where the symptoms noticeably lessened? Are we anywhere near that?!

 

Does anyone have experience with Dr. Peter Smith? I searched the boards and found shockingly few references considering what he claims to be able to do.

 

 

Who is Dr. Peter Smith? Some of the forum members had luck in healing PAWS with flumazenil infusions. However, theoretically speaking they're only effective in a very specific set of circumstances. Have you been in contact with a benzo-wise physician? There are some other drugs (such as pregabalin) that might increase his quality of life.

What's holding him back exactly? Why is he only shuffling around the house at most? It makes a difference what his biggest problems are because we can do some things to help ourselves. It's hard to make a good recommendation because what is good for one person might be bad for others. Good self-care is good for everybody though. Eat as clean as you can, breathe properly (get in the habit of taking full deep breaths from time to time, throughout the day), both of these things are a big deal and if you're ignoring them, then they may be a source of hope. If you take these areas seriously, you can make huge gains. You are what you eat and the breath is the life force. So eat well and breathe fully. You could set an example to encourage and you'll also see the benefits if you're not doing these things.

 

It would be good to hear specifics if you want advice. Can you get him to open up a little?

What's holding him back is he's still mentally and physically symptomatic! I could list several dozen symptoms, easily, and they aren't background things. He's suffering horribly. In physical and mental pain all the time! He can't feel himself breathe, so none of that type of advice works for him. He doesn't eat sugar or caffeine or any derivative forms of msg. He pushes himself to get on the treadmill daily even though it seems to push him over his limits, because there's so much evidence about exercise being linked to brain health. I do set an example of better living - I've lost 28 lbs myself in recent months. I have incorporated a lot more vegetables into our meals. He's added probiotics and fish oil and turmeric to no avail. We talk multiple hours every day about what's going on with him. There is no lack of opening up, but it's obsessive fear all day long. Which I can't really blame him for after living in bed, in pain and unbearable fear and anxiety for 4 years. Nobody seems to be able to point us to any benzo wise doctors in this state, so we are doing this without proper medical advice. And it's getting bleak. I've consulted many therapists, and have a doctor out of state that answers a few questions from time to time but can't actually help us. This isn't going as described. One benzo for 2.5 years plus an Ashton-style taper should not add up to acute symptoms this long.

I have a question, I see he came off of Remeron, when was his last day of that?  That drug can cause just as much of an issue with people as a benzo, there are many remeron posts on here as well if you want to go there and ask them how long they are taking. It seems its the same with all psych drugs unfortunately so honestly you have to start his first day off as his first day off of all drugs. A big thing Ive noticed in being in this community and facebook groups is that withdrawal makes most of us sensitive to all drugs (until we heal that is, and not eveyone but alot of us) I am unable to even tolerate any supplements, they make my symptoms way worse. Does he have an issue with histamine, alot of us have this problem as well, I had to implement a low histamine diet to keep my symptoms in a tolerable range( he may not Im just asking in case its a possibility and could help)?

Does he have the same symptoms daily or do they change? Does he have windows?

 

My original comments were super negative so I’m editing them and rewriting this one. If you compared him from this year to last year can you see progress? Are some symptoms gone?

 

I am crabby that I have nasty head symptoms. But my husband pointed out to me that last year he couldn’t even leave the house because I couldn’t handle being alone. He reminded me that I would weep every day I had to leave to work. I had so many symptoms a year ago. So now for my only remaining symptoms to be head ones....yes they’re debilitating and weakening me, but I don’t have much else wrong....so I guess as mad as I am about these strong head symptoms, I’ve come leaps and bounds

 

36 months on Sunday. Thought I’d be healed by now

 

I encourage you to listen to Baylissa.com webinars about healing being nonlinear. Severity of symptoms does not equal amount of time we have left is what she says. She works with many many people in wd as a therapist so she has a lot of stories to tell

It does cost a monthly membership fee though of like $25

Exercise can also make symptoms worse, so it’s best to take it very slow. Perhaps start with short sessions of mild yoga for 6 months and see how that goes. Cardio is often bad for some of us in withdrawal.

What's holding him back is he's still mentally and physically symptomatic! I could list several dozen symptoms, easily, and they aren't background things. He's suffering horribly. In physical and mental pain all the time! He can't feel himself breathe, so none of that type of advice works for him. He doesn't eat sugar or caffeine or any derivative forms of msg. He pushes himself to get on the treadmill daily even though it seems to push him over his limits, because there's so much evidence about exercise being linked to brain health. I do set an example of better living - I've lost 28 lbs myself in recent months. I have incorporated a lot more vegetables into our meals. He's added probiotics and fish oil and turmeric to no avail. We talk multiple hours every day about what's going on with him. There is no lack of opening up, but it's obsessive fear all day long. Which I can't really blame him for after living in bed, in pain and unbearable fear and anxiety for 4 years. Nobody seems to be able to point us to any benzo wise doctors in this state, so we are doing this without proper medical advice. And it's getting bleak. I've consulted many therapists, and have a doctor out of state that answers a few questions from time to time but can't actually help us. This isn't going as described. One benzo for 2.5 years plus an Ashton-style taper should not add up to acute symptoms this long.

Thanks for answering. I wasn't trying to suggest there isn't a very real problem, it's just that this detail helps a lot. From your earlier description, it was hard to tell exactly what was going on. Some people get extremely depressed but that doesn't sound like your husband.

 

It sounds like the willingness is there but the body is giving out. Exercise is great for brain health... and everything health to be honest. You're right about that. However, overdoing it can be counterproductive. The magic actually happens in the recovery following exertion. I think your husband might be exercising with too much intensity and too little recovery time. I would take a couple of weeks off the treadmill and restrict exercise to pottering around the house and if possible a steady walk outside in the fresh air.

 

Keep up the consideration over diet. I do think turmeric is good for you but the effect will be a drop in the ocean with severe withdrawal symptoms. Garlic and ginger are good too. I like Indian food and I've perfected a daal recipe that has a lot of the good stuff, onions, garlic, ginger, turmeric, tomatoes all have anti-inflammatory properties. I put in organic ghee and coconut milk for relatively good fats. Lentils are very nutritious. For me this recipe seems to really work, so I thought I'd share. Bit random, I know.

 

The reason I am suggesting a two week break from vigorous exercise is because it sounds like he's overdone it for a little while. The good thing is, I reckon if he can give himself a proper break (if it feels right, take it easy beyond 2 weeks) then his efforts won't be in vain. Take a rest and lock in the benefits of all that exercise. He'll get stronger but not if he runs himself into the ground.

 

Your husband is lucky to have you in his corner, supporting him so closely. He's probably trying too hard to get better and I bet one of the reasons is to take the burden from you. Can you persuade him to hold back? Some of the most valuable support I've had in my journey is when a loved one has helped me to slow down. Good luck with everything!

How old is your husband? And when did he get off Remeron?

 

Please make sure he is not drinking alcohol or using any substances like Marijuana that work on the GABAa Receptors. (These can prolong healing). There are many substances as well.  Sometime Caffeine is a negative, depending if his receptors are down regulated or not. (withdrawal anomaly)

 

Also, look into Ginko biloba...this has helped some people who use it for 4-6 months. Make sure its the “Ginkgold” brand.  It helps with blood flow to the brain.

 

God bless

Marijuana (cannabis) does not work on GABA(A) receptors. Myself and others use it and definitely still heal.

 

It can be a little risky, people can react badly and have a bad experience which can set them back. It's nothing to do with cannabis being remotely like a benzo because that is simply not true.

 

I'm sorry if this is confusing but I would give the opposite advice. I don't normally push cannabis even though it works for me but the time when I would is exactly in this spot, when someone is years out and feeling hopeless. It can be a complete gamechanger for quality of life, just start slowly and feel your way into it. Indica is usually good for keeping the chaotic thinking of the high to a minimum. There's also the option of looking into quality hemp products that are high CBD, low THC. Federally legal in the USA, just do your research on where to order. Again, there is potential for some reaction but it's rare to come across a CBD horror story. I haven't seen one. I've seen where it doesn't work out, perhaps causes a setback, but never a long term CBD horror story. It's very safe as far as psychoactive substances go. Thousands of years of human consumption is my evidence.

 

I realise that not everybody would want to take this risk, even though I think it's slight and the calculus suggests it would be a good idea. However, even better than weed would be Wim Hof breathing and cold showers. Check out this article, it covers the basics of why cold showers are a good idea. There's plenty more extensive research on the net. As for Wim Hof breathing, I suggest this because of the simplicity. Pull up some videos on YouTube, learn the technique and what to expect, then have a go. You will see an immediate and powerful effect. Anybody can do this. It's just a form of pranayama yoga, it's not the only breathing technique that can have such a powerful effect, but it is easy to grasp for a Western mind. It gets the adrenaline going but not the cortisol. It activates a process called autophagy which is when your body uses dead cells and cellular debris to generate new cells. This is what you want, out with the damaged crap, in with the repair work. Two birds with one stone. I preach this because it works immediately and is well explained scientifically. Build up to daily practice. When you can practice these daily, you will start to see real progress in your recovery. It works for me and as far as I can tell, literally everybody who gives it a proper go.

Exercise can also make symptoms worse, so it’s best to take it very slow. Perhaps start with short sessions of mild yoga for 6 months and see how that goes. Cardio is often bad for some of us in withdrawal.

This is true. I've recently come to learn that acute stress and intense physical exercise both cause excretion of tribulin, and endogenous BZD-site GABA_A inverse agonist (and MAO-A inhibitor).

Marijuana (cannabis) does not work on GABA(A) receptors. Myself and others use it and definitely still heal.

 

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3207709/

 

https://www.sciencedirect.com/science/article/abs/pii/S1043661816311392

How did this post turn into a fight about weed. Not helpful. Bam I’m looking at you. This isn’t helping anyone

 

Please stick to the main question

 

Hey Meganz.

 

Nobody is fighting as far as I can tell. I am not.

How is discussing marijuana helpful for the OP. She didn’t ask for that advice. Stick to the point

How is discussing marijuana helpful for the OP. She didn’t ask for that advice. Stick to the point

 

fixed.  no fighting at all. (have serious dp/dr with a pinch of psychosis right now, so i should keep replies to flee size for now) I wish this gentleman (husband) all the best.

How is discussing marijuana helpful for the OP. She didn’t ask for that advice. Stick to the point

I'm sorry you didn't catch it but I already answered this. I think it is relevant and helpful to present a counter to the cannabis scare stuff. Some people use cannabis effectively to heal and many of those people were losing hope. If you don't think that's relevant to say, then I don't suppose I can convince you here. But of course I want people to be careful and not go in blind, I wasn't arguing with the other guy. Nothing happened until you wanted to police a non-incident. It looked to me like OP was open to suggestions. Maybe faith and legality are issues, maybe they've had a bad experience and it's just not an option, I don't know. They didn't rule it out. But the guy I quoted instructed OP specifically to avoid marijuana without making clear that was just his opinion. BB is a public forum and one of the advantages of this is that bad advice can be challenged out in the open.

 

It is a fact that lots of people have a significant improvement in their quality of life with cannabis and it is a fact that it's an available option for many too. I'm sorry if you have different priorities or it's not an option for you but you're just plain wrong to think I'm missing the point. Anyway, I really do agree that people should be cautious and I let the other guy tell me something I don't know. I think it's you that derailed the discussion or maybe I should just let it go. I'm not fighting, I just want you to knock it off trying to stifle discussion on topics you don't like.

Bam,

It’s not that I dislike the topic. But keep it on a post about marijuana. This poor woman is looking for help for her husband. Not your unsolicited advice on recreational drugs that she probably doesn’t care about. Rude

 

You’ve been inserting unsolicited advice into many posts and it’s really inappropriate. No one asked for your opinion on marijuana or blood sugar. I’m sorry if you’re struggling but know your audience. We’re all struggling here and things that are really unrelated to the main posts are just disrespectful. If you want to talk about it, make a new post on the topics you want to discuss. At this point you’re hijacking posts and steering people off topic and it’s just not ok

Ok folks let's dial it back here. What I'm seeing is that someone posted some information about marijuana and diaz-e-Bam refuted the claims about it's affect on the GABA A receptors. This followed with other articles to support the claim set forth by FoeHammer.  This is fine and acceptable according to forum rules and polices.

 

Since this is a peer support forum, we expect there to be differing opinions. What was done was exactly what we expect from adults, providing resources from verifiable sources to support the statements made.  Healthy debate is fine and I don't see where there has been any disrespect on the part of the participants of this thread.

 

Granted, this veered off topic, but let's leave this issue behind and move forward helping the OP.

 

By the way Megan, you are welcome to your opinions about marijuana but it is not only used recreationally. There are many studies showing that medical marijuana is helpful for some medical conditions. I can find references for this later.

 

pianogirl

Maybe this site isn’t for me anymore. OP, I’m sorry your questions didn’t get tended to. I’m pretty over this

I would tell him to do not eat junk like cakes, cookies, pies, candy, NO Processed sugar.  A little sugar in fruit is fine and recommended.  I would not quit sugar all at once either.  But I know sugar is a poison and very horrible for our bodies

I googled Dr. Peter Smith, Benzo Withdrawal and found his website, I think he is in the U.K.  He does everything virtually and does deal with Benzo Withdrawal.

WD can cause something like ME/CFS.

If exercise makes him feel worse it is a bad idea if you have an CFS type illness. It can cause further damage.

Exercise can also cause mast cells to activate that can cause all kinds of problems.

 

It is better to pace. Don't do anything that makes symptoms worse. Find the limit of the activity you can do without symptoms increasing and stick to it.

 

If can get stable at that level increase its TINY bit and see how that goes.

 

WD can cause something like ME/CFS.

If exercise makes him feel worse it is a bad idea if you have an CFS type illness. It can cause further damage.

Exercise can also cause mast cells to activate that can cause all kinds of problems.

 

It is better to pace. Don't do anything that makes symptoms worse. Find the limit of the activity you can do without symptoms increasing and stick to it.

 

If can get stable at that level increase its TINY bit and see how that goes.

 

Maybe this is why working has been making me worse lately and I’m ok when I lay around and do nothing. Even sitting at a computer desk for long periods of time seems to be too much to handle

 

Maybe this is why working has been making me worse lately and I’m ok when I lay around and do nothing. Even sitting at a computer desk for long periods of time seems to be too much to handle

 

Same with me. Reading too long, concentrating too long in meetings/ work makes symptoms rev up. Everything needs to be done slowly / in short spans of time. Our brains and bodies need a lot of rest even if it doesn’t feel like it