Update and request for feedback

[[fe...]]

Hello wonderful buddies,

 

It’s been a few very scary and trying days. My husband has been continuing the taper without pause, but twice in 3 weeks he had a bad response to the compound. What I mean by “bad response” is severe akathisia. He did not sleep or eat since Tuesday and until today. It takes elimination from his system in order to start recovering… I think that this time was especially bad because he had not fully recovered from the previous incident. Pure fear for him and anxiety kept me up as well for almost 48 hours. To say I crashed would be an understatement.

 

Anyway, one of the reasons for the post is that yesterday we tried cyproheptadine for the first time. Anecdotally it helps with akathisia. He took a small piece of a quartered (badly quartered, because I could not see straight by that time) 4 mg pill. The bad first: he experienced brain fog, which in his hyperactive state caused alarm and balance issues, which were likely exacerbated by the lack of sleep/ eating. I think that with the drug elimination he would have recovered anyway, but because cypro is used for anorexia it helped with getting him to eat for the first time in days and also sleep, if fitfully. That’s the good part. I think that it did help blunt the severity of physical akathisia symptoms, because other than eating and being able to finally lie down, he also stopped pacing (he had been pacing 24 hours per day… literally. I could post a visual of his activity tracker) and moving around. He still twitched/ jerked/ had muscle spasms while in bed. Maybe a higher dose would have done more. Maybe this was enough to help a tiny bit. I meant to stay up and watch over him, but I went comatose very soon after getting comfortable in bed.

 

Other than that, he added berberine (500 mg) to the NMN/ TMG/ Resveratrol combo as of 6/9. It’s been kind of rough on his stomach, but well tolerated otherwise. Adding berberine to the rest is supposed to further help with SIRT1 activation and as a supplement it’s good for the heart and brain. I was recently reading some articles about NMN helping with recovery from stroke (https://www.ahajournals.org/doi/full/10.1161/strokeaha.115.009216 and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5429727/ , for example) so here’s hoping that indicates help with benzo injury as well. As always, none of these are suggestions. I’m sharing what my husband has been up to in case it’s helpful to anyone or anyone has any feedback either way. Has something helped you guys? Have you had any experience with any of this?

 

The tragic thing about akathisia is that there is so very little that can be done. I have no idea what it feels like from personal experience. I know what my husband has described. The closest I can understand it is “It’s like being on fire and jumping from a building. It’s not that you’re not afraid of the fall, but you are THAT desperate to run from the flames”. Cypro might be helpful… maybe even safe enough to try because you can try so little of it. We got a script for Cogentin (0.5 mg) and it’s scored… that’s also supposed to help with akathisia, but no feedback on it yet. The half-life is 12-24 hours, so that’s scary.

I don’t know. He’s doing better today, but we’re both exhausted. Not comparing my condition to his- that would be anywhere from insulting to laughable.

 

If anyone has suggestions about any other strategies to deal with akathisia, please share. In his case he goes from 0 to torture within hours. There’s no transition or gradual increase of symptoms… it’s “usual taper misery” to “pits of hell” in a matter of hours.

 

I appreciate you all and thank you in advance for any feedback.

[[Li...]]

I’m sorry to learn about your husband’s akathisia.  We have another member who is currently suffering from this horrible condition so I hope she will stop by to offer support and share her experiences.

 

Fyi Some studies have found that berberine can interact with drugs metabolized by P450 enzymes, including CYP3A4 (e.g. clonazepam).  For example:

 

Modulation of Major Human Liver Microsomal Cytochromes P450 by Component Alkaloids of Goldenseal: Time-Dependent Inhibition and Allosteric Effects - 2020

https://pubmed.ncbi.nlm.nih.gov/32591416/

 

Repeated administration of berberine inhibits cytochromes P450 in humans - 2012

https://pubmed.ncbi.nlm.nih.gov/21870106/

[[fe...]]

Hi Libertas, 

 

Thank you for the insight! I had not seen the interaction with clonazepam when I was looking into possible interactions of supplements with his medication.

 

I wonder if it was a contributing factor in any way. Some things kick in a reaction after sufficient concentration in the body, so perhaps that is why he did not experience adverse effects immediately? It's so hard to tell when the nervous system is injured.

 

A slight update: cyproheptadine appears to be helping control the physical symptoms of akathisia. The brainfog and balance issues continue to be alarming to him, but he has been able to eat a little and even drift off. Still uneasy sleep, but I'll take anything over the 24-hour pacing. Literally 24 hours. No rest at all.

[[Bo...]]

Just chiming in, hi there!!!

 

Cypro being a supplement? It’s not the antibiotic cypro correct? Just want to make sure bc that antibiotic can cause extreme neuro harm.

 

Gosh I struggled with aka badly as well at certain points and I am so sorry. It’s horrendous. Certain foods made it worse for me (beef, almond butter peanut butter), yhay stuff still makes it rev up for me.

I had to pace, stomp, throw ice at the side of house to get some aggression out, rock slowly side to side and hold a heating pad against me, put multiple heating pads across my body would sometimes help, sitting in a warm bath sometimes calmed the exploding nerves feeling internally.

 

Supplements made me worse:amplified my aka so I just didn’t use any. Slowing down to 5% reduction a month for a bit helped mine get more manageable, but I know that’s not helpful for others.

 

Will be praying things ease up for your husband. Chris Paige a therapist went thru akathisia pretty badly and is working on an akathisia institute so you might reach out and see if he can share any tips if you haven’t already. Hugs.

[[fe...]]

Hey you, 

 

Sorry for the confusion- I edited to show cyproheptadine. It's the antihistamine that my husband took on Thursday and Friday. It's interesting that you mentioned Chris Paige because my husband has been looking at information on TE (toxic encepalopathy). I don't think it fits, but this kind of mental rabbit hole further messes with your state of mind and despair.

 

Saturday was an okay day for the most part, but there's been an upswing in his symptoms as of about 1 1/2 hr ago. He did not take additional cyproheptadine yesterday. On one hand I know that getting two bottles that were not good for him and the second especially was horrible for his nervous system... my theory is that it was so because he had not fully recovered from the previous experience.

 

Things are usually more linear in terms of recovery from a bad batch and this is really scaring him. Scarring him too. I can't stand how much this is hurting him and how helpless he feels about it.

 

Any thoughts/advice is welcome and needed.

[[Bo...]]

I see, figured it wasn’t the antibiotic but always good to fitnle check .

 

Every time I start a new batch of my liquid compound I have issues the first few days… then I even out better. It is always the sane and I don’t understand it but symptoms increase noticeably and I’m like ok new batch. Not sure if this is what’s happening to him or not. Also sometimes our bodies change in this process where our bodies throw tantrums for something we used to do ok with. Food, medication, supplements… have heard this for a friend who is on both Librium and Ativan taking both. Her body just started rejecting the Ativan what she used to be ok afterward taking it. There is no solution really, our bodies can seem like they are acting paradoxical. This happened to me on the tablets where I got worse after my dose certain times. Then I’d be ok the next few months and then go thru a couple weeks where I was worse and then be ok after my dosing. Some people this happens with and not sure why.

 

But yea, wanted to mention that every new batch of liquid my symptoms intensify for a week or so and then I fall back into my usual rollercoaster. Hoping your husband can get out of this wave and settle some. It might be cuts adding up that have caught up to him and he needs a little hold for a couple weeks to let his brain catch up too. I hit the wall when this happened to me and ajathisia was non stop. I held and then slowed and that helped. Hopeful the aka nightmare improves, it’s so so hard. It’s back at night for me.

 

Lastly I know a medicine is last resort but people with severe aka told me last year that propanalol the beta blocker helped their extreme akathisia. I never tried it bc had low blood pressure and didn’t want to add anything but was very close bc I was struggling so bad. Also the latest video of a girl interviewed on Dr Witt Doerring YouTube (a psychiatrist who specializes in deprescribing), also had some help with propanalol for her akathisia. Not saying it will work, but if y’all are at wits end, many going thru benzo wd have tried it for heart palps, anxiety and ajathisia.

 

Sending hugs and prayers to fellow Texan. 💜

[[fe...]]

Thank you for checking in and the support.

 

Cyproheptadine does seem to help in some ways, but the brainfog and agitation unless you can sleep come with a bag of their own crap. We do have a script for cogentin but he's (totally understandably) afraid to take anything.

 

I feel so helpless when this happens. His psychiatrist has been mostly MIA through this, which makes this even worse. I took off from work since last Wednesday and am likely taking off this week as well. It's horrific what medication can do to an injured nervous system.

 

Currently reading old threads in case I missed anything before...

[[fe...]]

Quick question for you guys: Has anyone had issues with the TEVA diazepam recently? My husband tested negative for benzos (again) even though he's taking 7.5 mg of diazepam that any test should be able to pick up (clonazepam is only picked up in specific tests).

 

I appreciate any insight..

[[Ta...]]

I am so very sorry that your husband is going thru this. I've suffered thru akithisia, and there's really nothing worse than that.

Valium gave me akithisia, and when I got off of it, the akithisia disappeared. I went back on Ativan, and am tapering off of that directly.

I just wanted to mention that to me, akithisia and Serotonin Syndrome are identical in their symptoms. SS can be relieved by drinking unfiltered cranberry juice and grape seed extract.. Also, increasing nitric oxide can help tremendously. There's a breathing technique that increases nitric oxide:

1. Hum for at least 5 seconds. 2. Breathe in deeply thru your nose. 3. Exhale slowly thru your mouth. Repeat. This helped me. I hope it helps your husband.

 

 

[[Bo...]]

Hi feelberlin, try your message on this Valium group board bc you might get some feedback there too. So sorry to hear of the grief your husband is experiencing. I too didn’t have any benzos picked up in bloodwork when I was even in .75mg of K in ER, and also none shown in bloodwork they do for entering psych ward saying 0 benzos in system back in 2021, but maybe that’s bc it wasn’t the right tests.

 

http://www.benzobuddies.org/forum/index.php?topic=96753.23480

[[fe...]]

Thank you all for the insights  :smitten:

 

Trying to get the brand name valium. Other than the cost (which is quite insane) it has been an adventure. NO ONE carries it. I finally managed to get to the bottom of the delay and, apparently, it's back ordered at the manufacturer level because there has been "unexpectedly high demand" for it recently. I wonder if there has been an issue with the generic in general.

 

Of note, in case anyone ever needs to go the brand route, my pharmacist have me the following advice, which is critical in order to push brand name through insurance: "mark the RX as "BRAND MEDICALLY NECESSARY", if the doctor doesn't, Insurance may not reimburse if you file it in the future".

 

Sharing knowledge gained during this time...

[[Li...]]

I wonder if the switch to a new manufacturer might also be a factor?  My understanding is that Waylis Therapeutics acquired the rights to Roche’s original Valium formulation fairly recently (2022).  Waylis may still be gauging demand and gearing up production.

[[fe...]]

I was not aware of that- thank you Libertas! I saw that Roche was discontinued in the Orange book, but with everything else going on, I didn't look further into it.

[[Ta...]]

I tried the brand name Valium and found it to be extraordinarily potent, and overwhelmingly sedating. I had an extremely difficult time maintaining consciousness on brand name Valium as opposed to generic. The brand is also very difficult to divide and cut. It's not scored - it's shaped like a "V," making it hard to taper evenly. This was just my own personal experience.

[[fe...]]

Thank you so much for the feedback Tall Girl. I'm honestly not sure what to expect other than possibly some predictability. If the medication is too potent compared to what my husband has been having maybe we can adjust it down. The typical dose on the generic has been 2.5 mg TID, using 5 mg pills. However, I know that 2mg pills are also an option.

 

Do you recall if the pill was water soluble? Totally understand if you did not experiment with that, but it doesn't hurt to ask. That would have been my approach if the pill was too much for him- titrate and see what dose actually seems correct.

 

I believe that, unlike clonazepam that is fat soluble, diazepam is water soluble.

[[Li...]]

Greetings, feelberlin.  I hope your husband is doing better.  The steadfast support you have given and continue to give him is both commendable and inspirational.

 

Re: diazepam’s solubility in water …

 

Per its official FDA drug label (link below), diazepam is insoluble in water.

 

It is supplied as  ‘… round, flat-faced scored tablets with V-shaped perforations and beveled edges” so splitting them in 1/2 along the score line should be ok.

 

Re: diazepam’s solubility in milk …

 

Diazepam is soluble in whole fat, homogenized milk. 

 

One of our members did a deep dive into the literature on the solubility of diazepam in various solvents. She summarized her findings and provided references here:

 

http://www.benzobuddies.org/forum/index.php?topic=267260.msg3372864#msg3372864

 

FYI I recently learned from a very reputable and knowledgeable source that there is also evidence to support the use of milk for clonazepam-based do-it-yourself liquids.  My source also commented that milk is preferable to water-based do-it-yourself liquids is because of its higher viscosity.

 

Link:

DailyMed - VALIUM- diazepam tablet

https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=260e2041-2bb3-482f-850e-b5d47a7bdbe6