Can't do this another day -- please help me -- I've become a worst case

[[Be...]]

I got off seroquel. But my benzo wd was so bad at the time I don’t really remember the seroquel wd. All I can say is I survived and you will too <3

 

 

I would say, "Don't be a stranger", but its good to not see you here. It means you are doing okay. 

[[Re...]]

I don't know what to do. It feels like no matter what I choose, I lose.

[[Ga...]]

Hello Meganz.  Always good to hear from you as you were a shining star on the benzo forum boards, and in spite of so many awful symptoms you endured for many years, you always gave support to your fellow buddies!

 

Hugs,

 

GG

 

 

[[Be...]]

I don't know what to do. It feels like no matter what I choose, I lose.

 

 

Maybe... and maybe not.

 

I took my time researching NAD+. I had old threads from BB's that did IV NAD+, but nobody who tried iontophoresis patches. I literally went into this blind, having no idea if it would work. Two people on BB had it fail. One had it done while in protracted w/d, and the evidence that it helps with it is lacking. The other had a liver not functioning fully, plus they caved during the first month and took several rescue doses. They admitted that it might not have worked because of those things. One of the people on BB who did NAD+ IV's, talked to patients at the clinic where they went. The majority had a successful outcome, but two did not. They speculated it may have been that those two were on multiple medications that made things harder. The NP I had telehealth with, told me they had people report good outcomes with iontophoresis NAD+. I watched Ken Starr Wellness videos, read through his replies to viewers questions, took notes. I vacillated for months. What if it doesn't work, but what if it does?  If it doesn't, I'd be reinstating and tapering for who knows how long.  If it does, I'd greatly reduce my recovery time.  There are days that acute hell was so bad, I questioned if I made a mistake, whether it failed.  I decided to focus on the positives, the tiny day-to-day improvements I made after getting past the initial first week post-treatment. They were there if I looked for them.  I had to change my mindset, and it helped. I see the trajectory I am on is similar to what others who did IV NAD+ reported. Intense acute the first week, slow improvement the second (where I am now) with much more improvement weeks three and four. I did not know for certain, if iontophoresis NAD+ would even work the same as IV NAD+.   It was scary jumping, but I felt pretty good during initial treatment. I held on to the fact, that if NAD+ did work, it would considerably shorten the whole w/d process. No dragging on tapering, no long acute, and even longer post-acute. People who did this reached about 90-95% healed in 5 to 6 months. All who did this successfully said the process was intense, but so worth it in the end. No regrets.

 

So, you are stuck in a Catch 22 situation. You feel damned if you do, and damned if you don't. What if taking a therapeutic dose of an opiate helps? You won't know if you don't try, and it's easy for us to think of worst case scenarios when we don't have concrete answers. So, you research. Talk to others, post questions here, weigh your options. Even if the worst case scenario happens, getting off the opiate won't be nearly as difficult. Try to get feedback from others who used opiates, you said you communicated with one. If you use Twitter, I've found the #prescribedharm community helpful. I asked about NAD+ there, got responses from a few who knew someone who successfully used NAD+ IV's to detox off of benzos. I had no negative replies. One person told me that a woman in her benzo support Facebook group did it, but the mods and admins were rather negative, and frowned on the whole thing, even though the woman reported success. I have seen lots of people ask questions using the #prescribedharm hashtag, and get responses. And there have been replies to query's regarding akathisia with benzo w/d and/or AP use. From people who have had it.

 

----->>>>>The more informed you are, the better you are in a position to make a decision.<<<<----- 

 

There is a BB member who I saw in one of the NAD+ discussions on BB, his doctor is Ken Starr. Ken Starr was helping him get off of various psych meds. He was considering NAD+ at least for the benzos. I can't promise you'd get any useful answers, but you could shoot an email to Dr Starr, and see what he has to say. If he has some ideas, you could follow-up with a phone consult. He might even know somebody to recommend to you, he has been known to do that. Here's the contact info page on his website: https://kenstarrmd.com/contact-us/ Several BB members report that he is knowledgeable, and informative. A few say he is highly regarded.

 

You've also seen replies from others who got through Seroquel and other AP w/d. They made it through. And they are telling you that you will too.

[[Re...]]

I am going to call Ken Starr. Thank you for that info. I wish I could use NAD+ to help the tapering. That would be better than opiates. But who knows how it would interact with Seroquel. I am afraid to research any further....I tend to find scary things that make my life more difficult.

[[Be...]]

I am going to call Ken Starr. Thank you for that info. I wish I could use NAD+ to help the tapering. That would be better than opiates. But who knows how it would interact with Seroquel. I am afraid to research any further....I tend to find scary things that make my life more difficult.

 

 

NAD+ works for opiates and alcohol, it reduces craving, but with alcohol, it also addresses the issue with glutamate. With benzos, it lowers glutamate excitotoxicity. One of the first BB's to have NAD+ IV detox, was NFN. She said it was more like an assist, it doesn't fix you immediately, but it does facilitate recovery. I really don't think it would work for any AP to be honest. Ken Starr would be using it to help people get off other psych meds, and so far he hasn't. I doubt it would interact with any AP, far more likely that an AP would interact with NAD+ working to detox any of the three things it has been shown to help with. NFN's triptan for migraines interfered with her NAD+ treatment, she had to stop for a day while she and the doctor figured it out. Once she eliminated that, NAD+ was resumed, and she successfully jumped off Ativan.

 

BB Shamo had NAD+, and the first three days weren't going well, turned out the high dose of pregabalin he took was the problem. He was able to cut his dose in half, and resume NAD+. He jumped off the remainder after a follow-up treatment. The person going to Starr, was planning on getting off other psych meds first, then using NAD+ for benzos. They did not mention what the other meds are. So, I don't know if Starr can give you any ideas, or not. Or if he knows somebody to suggest to you. All you can do is ask and see what he has to say.

 

If you don't use Twitter, I can post in the #prescribedharm community. Quite a few have dealt with AP's, including Seroquel. I can report back anything I get in reply. People are pretty responsive there.

 

 

[[Re...]]

If you would post for me, that would be great. Thank you.

[[Re...]]

I am going to call Ken Starr. Thank you for that info. I wish I could use NAD+ to help the tapering. That would be better than opiates. But who knows how it would interact with Seroquel. I am afraid to research any further....I tend to find scary things that make my life more difficult.

 

 

NAD+ works for opiates and alcohol, it reduces craving, but with alcohol, it also addresses the issue with glutamate. With benzos, it lowers glutamate excitotoxicity. One of the first BB's to have NAD+ IV detox, was NFN. She said it was more like an assist, it doesn't fix you immediately, but it does facilitate recovery. I really don't think it would work for any AP to be honest. Ken Starr would be using it to help people get off other psych meds, and so far he hasn't. I doubt it would interact with any AP, far more likely that an AP would interact with NAD+ working to detox any of the three things it has been shown to help with. NFN's triptan for migraines interfered with her NAD+ treatment, she had to stop for a day while she and the doctor figured it out. Once she eliminated that, NAD+ was resumed, and she successfully jumped off Ativan.

 

BB Shamo had NAD+, and the first three days weren't going well, turned out the high dose of pregabalin he took was the problem. He was able to cut his dose in half, and resume NAD+. He jumped off the remainder after a follow-up treatment. The person going to Starr, was planning on getting off other psych meds first, then using NAD+ for benzos. They did not mention what the other meds are. So, I don't know if Starr can give you any ideas, or not. Or if he knows somebody to suggest to you. All you can do is ask and see what he has to say.

 

If you don't use Twitter, I can post in the #prescribedharm community. Quite a few have dealt with AP's, including Seroquel. I can report back anything I get in reply. People are pretty responsive there.

 

 

 

Hi BLottie, Did anyone say anything useful on Twitter? Still feeling like I am at my wits end. Horrendous to live this way day in, day out.

[[Be...]]

It may take some time, I usually get/see responses, but it may take a few days. 

[[Re...]]

Got it, thank you. I am going to be making decisions this week. Friends and family members who are informed, benzo and AP wise, and supportive are trying to help me because they think my mind is in terror which it is. I so appreciate your help in this matter. I think I am also going to be blind-tapered which should help me with the trauma of all of this. I wish a doctor could use placebo.

[[Be...]]

More prominent Twitter accounts that are very active in the #prescribedharm community have retweeted to their followers to give it more exposure. I Tweeted a reply asking if anybody has any feedback. The Tweet is getting more eyes reading/seeing it.

[[Re...]]

Thanks. Did you just tweet my post here?

[[Ha...]]

Have you made any decisions Rebecca?

Hardy x

[[Re...]]

Hi Hardy I am still figuring out what to do next. Friends and family who are protective and understand benzo wd and what we are up against are stepping in to help. Psych drugs are not an option and neither is reinstating.

[[Ha...]]

I’m so glad you have the support of your friends and family. I’ve come across folk who have very little, none or even worse actual hostility.

In the end, it’s you who has to make the final decision as how to move forward and judge what you are willing to bear or risk. It’s tough. I’ll be thinking of you. I hope beyond hope that things go smoothly for you.

Hardy x

[[Re...]]

Thank you.

[[Be...]]

Thanks. Did you just tweet my post here?

 

 

I just summarized things, to consolidate it into two tweets, one and a reply. Tweets are limited in characters, and people don't read long multiple tweets.

[[Be...]]

I got a couple relies in Notifications, regarding your aka. I don't know if any of this is helpful.

 

"Not sure why they are tapering off another med so soon after. I'd stay on the Seroquel for now. Wait for nervous system to regulate a bit."

 

"I cold-turkeyed Klonopin. It took 2 years to completely recover. Eighth month was the first I experienced any noticeable improvement."

[[Re...]]

I got a couple relies in Notifications, regarding your aka. I don't know if any of this is helpful.

 

"Not sure why they are tapering off another med so soon after. I'd stay on the Seroquel for now. Wait for nervous system to regulate a bit."

 

"I cold-turkeyed Klonopin. It took 2 years to completely recover. Eighth month was the first I experienced any noticeable improvement."

 

Thanks BL

[[Ca...]]

Hi Rebecca,

 

It's been a couple of days since I read the whole thread... I don't know for sure anymore whether you mentioned you already tried Propanolol... Didn't you? ...and mentioned it made you depressive? If you didn't try, maybe it would be another option... or any other substance like that that you tolerate...(as you probably already know It's beta blockers/Blood pressure medication=no psych meds)

 

I tried 2x 10mg Propanolol, one 10mg at 7pm and one around midnight, yesterday, for Panic and akasthisia like symptoms... I had immediate relief within about 30mins ...

 

What dosage of Propanolol did you try? (if you tried)

It intensifies my tiredness and exhaustion and jelly legs... that's stupid... but better than akasthisia or Panic or both....

 

In me it started as Restless legs and weird leg sensations... so I got into panic ...then I had it in the arms, too.... and then it was in the entire body.... something like a brutal pressure/tension inside... would you describe it the same way?

 

Oh yes... what I forgot... when I had the very bad Akathisia while my failed reinstatement attempt I was told that "Biperiden" or other anticholinergics (for Parkinson's) might help with akasthisia  ... they are also given to people who develop akasthisia from APs... BUT Biperiden (at least) is said to be addictive... That's why I personally declined... and I personally would not take any psych meds either....

[[Re...]]

I can’t take Propranolol due to genetic liver issue.

 

I will never touch another psych med.

 

Unfortunately the only other option is an opioid. And who knows if it will work.

 

Your symptoms are suddenly coming back???

 

[[Ha...]]

Can you just take a single dose of opioid and see what happens? Can’t see that it would do any harm.

Hardy x

[[Re...]]

Yes. What if it makes it worse?

[[Ha...]]

But the effect would only last a few hours even if it was worse but improbable as opioids act as depressants. Worth the risk I would say for maybe months of relief?

Hardy x

[[Re...]]

Also the only reason to take it is to taper off the Seroquel the offending agent here. What if that plan fails then I could be stuck on morphine and Seroquel.