savinggrace

[Shep]

19 hours ago, savinggrace said:

I have several months of 10 mg. tablets. so I could do it pretty slowly.

 

Do you have an expiration date for your tablets? You may want to go as slowly as your tablets will last before they go bad.  If you can do a 10% crossover, that may allow your nervous system to adjust over a period of months. That would mean not making any reductions, though - it will be hard to tell if the crossover is causing problems or if it's the reduction if you do both at the same time. 

 

You may find that you are able to tolerate going faster, but starting out at 10% will let you test the waters. 

[savinggrace]

Hi Shep, 

The expiration on some is July 2023 and some are January 2024. So I think they will be fine. So a 10% crossover would be good. How often do you think I should make the crossover? My doc has been writing for 15 mg for a long time and I have only taken 12.74 which is how I accumulated). If I notice a big difference it is going to be hard to know when to adjust the crossover again as I haven’t been stable ever, but for the last few years my health has declined seriously so this is coming at a very bad time for me) Should I stick with crossing over every few weeks even if I feel worse?  I am currently on week 9 of a trileptal cut and still have not gotten back to withdrawal normal. My sleep/pain are still noticeably worse. I am going to have to do this crossover anyway. I was hoping to step up the trileptal tapering as it has seriously affected my absorption of important nutrients in addition to drug interactions. I feel it has impacted my health worse than the Valium. 
 

Thank you for your help. 
Grace

 

 

[Shep]

20 hours ago, savinggrace said:

Should I stick with crossing over every few weeks even if I feel worse?  I am currently on week 9 of a trileptal cut and still have not gotten back to withdrawal normal.

 

While you're crossing over, please hold the trileptal. It's never good to make two changes at one time. 

 

The rule of 3KIS: Keep it simple. Keep it slow. Keep it stable.

 

Let's see how you do after the first 10% crossover to the generic form of Valium. 

 

20 hours ago, savinggrace said:

I was hoping to step up the trileptal tapering as it has seriously affected my absorption of important nutrients in addition to drug interactions. I feel it has impacted my health worse than the Valium. 

 

If you can stabilize on that first step of the crossover, will you have time to hold everything steady with the Valium / diazepam mix and concentrate on the trileptal? This is going to be tricky to try and navigate both the impact of the benzo change, along with the trileptal problems. You may have to weigh the pros and cons to see which should take a priority. 

 

Have you had any nutrient testing done to see which nutrients are being affected? 

[savinggrace]

Hi Shep,

No, I mis-spoke. I realize I cannot taper the trileptal any more until I make this crossover. Disappointing. I am seriously Vitamin d and vitamin B deficient. (As in almost none) I got so bad I had to start injecting B12 every 3 weeks. (I take half the recommended dose as it really stimulates me) The injections improved my serum levels (and calmed my doctors down) but don’t translate to much more than that besides the blood levels not going even lower. Vitamin D supplements are also extremely stimulatingamd I am very deficient. I can get it up to the 20’s in the spring to fall season with sun but it still stimulates me. I am also calcium deficient and vitamin C deficient and several other B’s. I have severe digestive disorders that prevent absorption of essential nutrients. (Especially fat-soluble ones like D) I do the best I can with my diet. I cannot tolerate dairy or calcium supplements so I now have severe osteoporosis and arthritis. I weigh 88 #. I am totally house/bed bound. I am in pain all the time. I sleep very little. (Fragmented; never more than 2 hours at a time). ALL supplements interact with my meds so I try to get what I need from food. (Except calcium which stops my gut motility completely; I have tried all forms) Of course my docs want me on the “big drugs” for osteoporosis but frankly, it would be like chemotherapy for me. 
 

I am, and have been doing the best I can for a long time. My only regret right now is holding to try and stabilize too long. I have never stabilized and my health problems and life quality have been severely changed forever. 
 

Right now I am planning to substitute 10% of the brand name with the generic and waiting to see what happens. I wish I could be optimistic. The tiniest change affects me badly and I have been in an intolerable physical state for a very long time. I just couldn’t lose my sanity by cutting any more. Managing the state of my ever-declining health is a full-time effort that has (believe it or not) taken a ton of courage and perseverance. I am always in pain; seldom get any quality sleep. 
 

I will check in after I start the crossover. 
 

Thanks for your time. 
 

Grace

[Shep]

@savinggrace I'm sorry, it does look like you're in between a rock and a hard place. Please let us know how you do. I hope the slower crossover is helpful in getting you stable on the new formula. 

[DataGuy]

On 4/10/2023 at 7:54 PM, savinggrace said:

It is a crime how much they are gouging people like me...because they can.

 

You will not find any disagreement from me! But that is only crime #1 on a very long list...

 

I'm sorry @savinggrace, I hope the transition is not as bad as expected. I wish things were easier for you. I know from experience that it is exhausting 'managing' symptoms all day simply in order to continue existing. Life should not be that dreary. 

 

Hope you get a nice surprise sometime in the future, instead of another bad one. 🙏

[savinggrace]

Thank you Data Guy. You hit the nail on the head.  I am sorry that you, too, spend all day managing symptoms just to exist. It feels awfully futile, doesn’t it? And yet we keep on trying. 
 

Take care. 
Grace

[DataGuy]

How are you doing @savinggrace? There must be a cheaper solution for the diazepam....I wonder if you can import it from another country? I'm sorry the crossover has been difficult. Such an unnecessary hassle. 

[savinggrace]

Hi Data Guy,

 

yeah, good thought but nobody will ship a controlled substance internationally. Many pharmacies do not even ship Valium out of state. I am in a real mess. My doc had me updose (very sparingly but overall I am up 2.25 mg overall with the generic to try and get stabilized or at least to where I was since the crossover. Now I am at a higher dose and having severe air hunger every night so we over-shot the mark. (I think or is the air hunger withdrawal of name brand?)  I will not updose anymore but now I have to claw my way back down to where I was and I fear I have stayed at this higher dose too long. My blood pressure is scary low. My doc advised me to stay at this dose for a week but before I started the crossover and then updosed my air hunger was about once every 3 weeks. Now it’s every night.  So I either am having side effects from new diazepam or side effects from dose being more than my body can handle. I can’t sleep (and am laboring to breathe) all night, every night. I think I made the crossover (only about 1/3 done so far, too fast and it caused acute withdrawal). And then the change caught up with me. I am going to start tapering this updose tonight but can only manage a tiny bit I fear. This is a nightmare on steroids. I basically have now found myself at an unknown higher dose (as we have no idea what the equivalency is with this generic vs. brand; nobody does.). I cannot believe how terrifyingly awful this is. My doc is shooting in the dark with this. She has no experience with people having trouble with generics. I listened to her advice to updose (down to 9 brand-name  but on 5.8 generic. So my overall dose is up? Or is it? Is the generic a lot weaker than the brand? Seems like the generic might be more potent than we thought at first. My gut does not like these new fillers either. There are 7 fillers in this diazepam. Nobody knows the answers to any of this and the trial-and-error approach is killing me. 
 

I never knew just how bad it could get. I am having heart problems. I went to an outpatient clinic for an EKG as I was having chest pain. They wanted me to go to the ER but I didn’t. I wouldn’t let them give me any drugs or anything anyway. I know my heart is just reacting to this change but my blood pressure is super low all the time. Sorry to vomit out all my fears on you. I feel so defeated. 
 

Grace

[DataGuy]

@savinggrace another possibility is that you are having a paradoxical reaction to the increase in dose, resulting in increased anxiety and other adverse effects. I had this and it can happen if your nervous system has become very sensitized. If the air hunger began happening after the dose increase, it could be this problem. It is also quite possible like you noted that the strength of each product is different, although in terms of drug content you would expect them to be pretty close. 

 

I'm sorry this is happening to you. You're right, the best you can do is trial and error. Unfortunately, once symptoms start to kick up, it can be difficult to tell why, and we don't want to overreact to variations that happen over days. I wonder if temporarily reversing some of the changes might help resolve the symptoms? That will at least give you a clue as to what is causing them. 

 

Hope you are able to figure out the issue and find a solution. It is indisputably terrifying. 

[savinggrace]

1 minute ago, DataGuy said:

@savinggrace another possibility is that you are having a paradoxical reaction to the increase in dose, resulting in increased anxiety and other adverse effects. I had this and it can happen if your nervous system has become very sensitized. If the air hunger began happening after the dose increase, it could be this problem. It is also quite possible like you noted that the strength of each product is different, although in terms of drug content you would expect them to be pretty close. 

 

I'm sorry this is happening to you. You're right, the best you can do is trial and error. Unfortunately, once symptoms start to kick up, it can be difficult to tell why, and we don't want to overreact to variations that happen over days. I wonder if temporarily reversing some of the changes might help resolve the symptoms? That will at least give you a clue as to what is causing them. 

 

Hope you are able to figure out the issue and find a solution. It is indisputably terrifying. 

Thank you so much. I am shooting in the dark all the time. I plan to cut .2 of the brand name as I suspect this is too much for my system to handle. I am up in total dose 2.25 total mg. In our attempt to find equivalency. I tried so hard not to do that. I think this “suffocation” feeling feels like an over-dose of sorts (does that make sense). I am afraid to “down-dose” too fast as my body overreacts to changes. I updosed .3 brand-name a week ago. I hope it is not too late to reverse that. I started getting extreme air hunger after about a 1.5 mg change. (All substituting generic for brand). For me, I am certain that brand vs. generic is a problem. As I have mentioned before, 15 years ago when I went from 2 mg. Generic klonopin to brand name and I was able to reduce the dose to 1.5 brand name immediately so I knew then my body was indeed affected hugely by generic/brand. 
 

I do have paradoxical reactions to everything but since I was having intermittent air hunger on just brand, every night air hunger now indicates I am taking too much overall and/or not enough to make up for the crossover. I refuse to go any higher. My gut is super-sensitive and it tells me I am over-dosing now. I am 15 years older and 25 pounds lighter than when the last big changes were made. At almost 69, my metabolism is obviously not the same. 
 

I really am super grateful that you reached out. I have no real support but my husband and he is clueless like me. I have a very very flexible, kind, and tolerant psychiatrist, who is giving me a lot of attention, but her ideas are a shot in the dark, I know. Do you think it is too late for me to undo the updose .3 mg of brand I did 7 nights ago?

 

Thank you. I hope life is treating you better. I really do. 
 

Grace

[DataGuy]

7 minutes ago, savinggrace said:

I really am super grateful that you reached out. I have no real support but my husband and he is clueless like me. I have a very very flexible, kind, and tolerant psychiatrist, who is giving me a lot of attention, but her ideas are a shot in the dark, I know. Do you think it is too late for me to undo the updose .3 mg of brand I did 7 nights ago?

 

Thank you. I hope life is treating you better. I really do. 
 

Grace

 

I don't think it is too late. And if it helps, you can trying reducing more to see if the air hunger eases up. Hypotension is a well know adverse effect of benzodiazepines. See here: https://www.ejinme.com/article/S0953-6205(19)30383-8/pdf#:~:text=Conclusion%3A Older people taking BDZs,people at risk of falling.

 

"Conclusion

Older people taking BDZs may have a higher risk of orthostatic hypotension, perhaps due to an exaggerated immediate BP drop. This adds to other BDZ-related falls risks. BDZs should be avoided in older people at risk of falling."

 

I'm glad you have a caring doctor helping you out, even if they are not that knowledgeable. It can make a big difference and it's a rarity in wd. I wonder if you would think about asking her if we could add her to the doctor list on the site. She sounds very nice. Here is the link to that thread.

 

Hope you feel better too. You have gone through enough torture for ten lifetimes.  

 

[DataGuy]

Hi @savinggrace, how are you doing? Have you managed to stabilize at all on the generic drug version? Hope you are doing better 🙏

[savinggrace]

Hi Data Guy,

 

So nice of you to reach out and check in.  Thank you.

 

I have had a TERRIBLE time with the generic drug.  It has been 7 months and I have managed to cross over to 1/2 dose generic and half-dose brand.  The generic has 7 inactive ingredients compared to 4 in the brand.  My digestive system has taken a gigantic hit.  There doesn't seem to much option though.  I read up on a couple benzo forums and have concluded that the generic I am taking is the most effective.  In fact, one of the generics a member was taking had his urine tested for active metabolites (there are 3) and he was in extreme withdrawal.  It turns out the manufacturer he was using was so weak he urine showed no active metabolites...none!

 

So my doc and I decided I better just tough it out as the brand name is soon to be discontinued as we have to search far and wide to get it.  We all know measuring blood/urine for psych drugs is a slippery slope.  My doctor is pretty aware and is using urine tests periodically (with my full encouragement) to see what has happened to the metabolites after going down to half. ( we measured before starting and now)  So it turns out (and admittedly this is not exact science) that I have crossed over about 50% and the active metabolites are about 25% less (that's a big "about") on the generic drug.  SO...when I make a change, I am changing .3mg every 17-20 days the blood level MAY BE going down 25% of .3mg so I can't really go any faster.  My gut is getting sicker but I have no choice.  I am worried I won't be able to get enough to fully cross over.  The only silver lining is that I MAY be actually cutting my dose while doing this (but I had to updose at the start 1.75 to try to start out from a more stable place)  We did that very carefully by going up and down every few days until I felt about the same as I did on a full brand dose.

 

I hope this makes sense.  My gut is sooooo bad.  My GI would gladly give me domperidone.  He has pushed it from day one but I just know it will mess with my brain AND my other drugs.  I never did well on drugs that messed with dopamine.

 

I am quite worried as I haven't been able to put on any weight since I dropped to 85#.  I eat as much as my gut pain allows.  Doctors are done with me.  I won't take their drugs; a feeding tube is not on my list of acceptable interventions.

 

I am alive.  I am barely living.  I hope to live to hold my grandson (thought that part of life was over) in March.

 

I see your suggestion to add my psychiatrist to the list of caring, wise psych doctors.  I am truly blessed.  I am the only patient she works with who is not pre or post-natal or pregnant.  That is her passion and her specialty.  I got lucky.   I see her about 3 out of every 4 weeks.  She has diagnosed me with severe PTSD (much is medically driven), depression and anxiety.   Whether these diagnoses are accepted here or not, they pretty much describe me.  Anxious, depressed, and traumatized starting in early childhood and continuing...

 

I sincerely hope you are experiencing healing on your journey.  Happy Thanksgiving to you.

Grace

[DataGuy]

Happy Thanksgiving to you, too, @savinggrace. I am just a bit sick now, but will reply later. Sounds like you are really on top of the crossover to generic. Very smart to look at the metabolites from diazepam. Hope you were able to enjoy the holiday as much as could be expected, given the circumstances 🙏

[savinggrace]

Thank you Data guy!  I don’t really feel successful with this crossover but we have approached it with the only tools we have…iffy lab work, logic and guessing.  Take care. Grace

[DataGuy]

On 11/21/2023 at 7:18 PM, savinggrace said:

Hi Data Guy,

 

So nice of you to reach out and check in.  Thank you.

 

I have had a TERRIBLE time with the generic drug.  It has been 7 months and I have managed to cross over to 1/2 dose generic and half-dose brand.  The generic has 7 inactive ingredients compared to 4 in the brand.  My digestive system has taken a gigantic hit.  There doesn't seem to much option though.  I read up on a couple benzo forums and have concluded that the generic I am taking is the most effective.  In fact, one of the generics a member was taking had his urine tested for active metabolites (there are 3) and he was in extreme withdrawal.  It turns out the manufacturer he was using was so weak he urine showed no active metabolites...none!

 

So my doc and I decided I better just tough it out as the brand name is soon to be discontinued as we have to search far and wide to get it.  We all know measuring blood/urine for psych drugs is a slippery slope.  My doctor is pretty aware and is using urine tests periodically (with my full encouragement) to see what has happened to the metabolites after going down to half. ( we measured before starting and now)  So it turns out (and admittedly this is not exact science) that I have crossed over about 50% and the active metabolites are about 25% less (that's a big "about") on the generic drug.  SO...when I make a change, I am changing .3mg every 17-20 days the blood level MAY BE going down 25% of .3mg so I can't really go any faster.  My gut is getting sicker but I have no choice.  I am worried I won't be able to get enough to fully cross over.  The only silver lining is that I MAY be actually cutting my dose while doing this (but I had to updose at the start 1.75 to try to start out from a more stable place)  We did that very carefully by going up and down every few days until I felt about the same as I did on a full brand dose.

 

I hope this makes sense.  My gut is sooooo bad.  My GI would gladly give me domperidone.  He has pushed it from day one but I just know it will mess with my brain AND my other drugs.  I never did well on drugs that messed with dopamine.

 

I am quite worried as I haven't been able to put on any weight since I dropped to 85#.  I eat as much as my gut pain allows.  Doctors are done with me.  I won't take their drugs; a feeding tube is not on my list of acceptable interventions.

 

I am alive.  I am barely living.  I hope to live to hold my grandson (thought that part of life was over) in March.

 

I see your suggestion to add my psychiatrist to the list of caring, wise psych doctors.  I am truly blessed.  I am the only patient she works with who is not pre or post-natal or pregnant.  That is her passion and her specialty.  I got lucky.   I see her about 3 out of every 4 weeks.  She has diagnosed me with severe PTSD (much is medically driven), depression and anxiety.   Whether these diagnoses are accepted here or not, they pretty much describe me.  Anxious, depressed, and traumatized starting in early childhood and continuing...

 

I sincerely hope you are experiencing healing on your journey.  Happy Thanksgiving to you.

Grace

 

Thanks so much for your update, @savinggrace. Always great to hear from you. I'm sorry you are suffering so much, but I hope you are able to fulfill your goal of meeting your grandson 🙏.

 

It is such a dilemma being forced to crossover to a generic like that. Pretty incredible to hear that the metabolites are down 25%. Did you mean 25% overall or 25% when factoring out the brand name dose you are still taking? If they were down 25% overall, would that not mean that the generic drug is only 50% the strength of the brand name (since the brand is half the dose, the 25% reduction would be entirely due to the generic and the only way that could happen was if the drug had only 50% of the strength of the brand name). But maybe you already factored that in and I am misunderstanding?

 

I know you have probably considered this, but if things go a little too sideways, would it be possible to simply take a larger dose of the generic? E.g.: if you were starting from scratch, cross over 1.75mg of brand name diazepam to 3.25mg of generic diazepam? Seems that might even things out and then your body would simply be left to deal with the different inactive ingredients rather than the decreasing blood levels as well. But perhaps I am missing something. In any case, incredible that the active ingredient is so different, and even more incredible that that is legal!

 

I have a friend who is looking into what exactly pharmacies are doing as far as dosages go. Perhaps I can ask him what he thinks might be going on with the generic vs brand name? The measurements of metabolites can certainly have some level of error, but probably not that large. Blood levels should be relatively stable with diazepam, especially since at least one of the metabolites can have a half-life of up to 200 hours.

 

As for myself, I am doing ok. I had a sort of bad reaction to nuts awhile ago and that definitely knocked me off kilter. I've been trying to stabilize since then with limited success. Still working and playing some sports though, so I am doing ok. But stomach has been off and it has really put a damper on my ability to get things done. I am sure you can identify with never quite feeling stable. Very frustrating! To say the least....

 

Anxiety and depression are most definitely real and very normal emotional states to feel after trauma or when things are just not going very well. My issue has always been with how they are treated. Sounds like your new psychiatrist has a better idea of how to do that without the harm of drugs. I'm very happy you found her : )

 

Let me know if I am getting things wrong with the generic dose. I will ask my friend if he has any knowledge of how generic doses vary relative to brand name and what the standards are surrounding these discrepancies. I hope you had a nice Thanksgiving, Grace. 

 

DG

 

PS: As far as adding the doctor, no pressure of course, but we have most definitely had members who were pre, post-natal, or pregnant. 

 

 

 

 

 

 

[savinggrace]

Hi Data Guy,

 

You ask THE big questions.  My husband and I have spent hours trying to answer them (previous to your inquiries as I was needing to know what this crossover was doing to my blood levels.  ie: going too fast, etc.)

 

I just wrote up a document TRYING to explain how we landed on the 25-27% weaker effect with diazepam generic.

 

I am cutting our logic/explanation here...I understand it is hard to follow but I can't make it any clearer.

 

My original brand name Valium was 12.75 mg./day.  At the time of the first of 3 urine analyses, where the metabolites looked very similar (between tests) when I was on all brand-name valium, I had cut my brand name to 8 mg/day which was a difference of 4.75 mg.  In order to maintain the metabolite level, as shown in my last urinalysis (and symptomatically somewhat stable to my normal withdrawal pattern) I need 6.5 mg/day of generic diazepam.  If we divide 4.75 (amount of brand name I was on before the latest test) by current replacement dose of 6.5 mg. generic we get. .73 which is 27% less than all brand-name.

Admittedly,  there are flaws here.  I saw in previous active metabolite urine tests that the numbers (before starting the cross-over)  are not the same, but according to my doctor, close enough to get a general idea.

My current change has me at 7.2 valium and 7.3 diazepam.  During the several months of this crossover, when trying to find the sweet spot, we tried up-dosing and down-dosing a mg. at a time, just for a few days at a time. until we landed on a total dose of 14.5 mg/day between brand name and generic.  This was laborious and difficult.

Assuming this logic and rationale is at all right,  I have gone from all valium to the above noted amounts in 7 months.  SO, we think it would be logical to say that when I make a new change (about every 3 weeks, average now)  I am essentially tapering by whatever the change is by 27% of the change.  I updosed diazepam by .3 and down-dosed valium by .3 a few days ago.   I am having obviously increased withdrawal symptoms but this is not a cut of 27% whenever I change.  It is a cut of 27% of the cut (recent change .3 less valium  is .081 mg. decrease in valium.

We looked at where I had “stabilized kinda” to where I am now which was 4 months ago.  Four times .081 mg. (27% of .3 down dose) equals .324. mg over 4 months.  Trying to find the dose that made me feel as the brand name dose was shockingly difficult.  At a 27% difference, the change is not as obvious when you are messing around with the dose as when, for example, 15 years ago I crossed over from generic klonopin to brand-name klonopin.  I was so sedated that the difference was obvious w/i a week.  I went from 2 mg. klonopin to 1.5 mg. in one week….again approximately a 25% difference.

Caveat…we have given this a ton of thought and tried to apply logical thinking to it.  We did not have anyone to consult to come up with this estimate.  BTW,  different manufacturers have very different results.  I am using TEVA as it got the best reviews for stability  and also seems to be fairly easy to get.  I  believe my body has had difficulty dealing with the new additional (3) inactive ingredients.

I also want to stress that my 20 years of valium use and intermittent use of benzos for 20 years before that made me at the extreme end of sensitive so many here would not be as affected by this change as I have been.  I am making this change because brand-name valium is insidiously expensive and now becoming nearly impossible to get.  I hope I can get it through this cross-over.  I am half-way there. Plus side?  I have made a tiny cut of benzo during this process.  For me, that is a (small) victory.

 

Clear as mud?  Yeah, I get it.  If your friend has any thoughts at all on our logic/conclusions, I would love to hear them.  My doctor sorta just went along with my thoughts.  It would be so nice to have an expert to consult.  I care because I don't want to be going too fast or blaming this process on ordinary withdrawal ups and downs.

 

It sounds like you are indeed healing, just looking at the time since we have started communicated.  I always wish you well and am eternally grateful for your interest and encouragement.  If you can't understand the above, I am sorry.  I did my best to communicate it for you, for myself, and for anyone here struggling with this problem.  I don't imagine there are too many people this will help.  We have spent an egregious amount on brand name drugs.  I still have remeron and trileptal in brand-name but I can't do this with all three at once, and my doses are low enough that the cost is do-able...though still 1-15 times what generics are...

 

My doctor simply isn't taking new patients or I would share her.  She has decided to "hold my hand" through thick and thin as she is quite concerned about all the medical trauma I have experienced and is helping advise me on handling other medical problems as far as referrals, bloodwork, etc.  I try hard not to take advantage of her.  She is/was one of a kind.

 

Thank you and good thoughts be sent your way for your own healing.

Grace

[DataGuy]

Sorry for taking so long to reply. This explanation makes a lot of sense @savinggrace, good on you for figuring it out! I guess my only question is how do you separate out the adverse effects of withdrawal from whatever potential problems are being caused by the additional inactive ingredients? The way I read your post it seems like you discovered as you were crossing over that you are also in effect reducing the dose, but decided to keep doing this anyway, because it has been tolerable enough? Or do you actually feel better in some way tapering slowly than you did holding?

 

I recall when I was tapering (a long time ago now) that even though it was quite difficult at first, it seemed like my body "adjusted to it" and I actually seemed to feel better slowly tapering than I did just holding the dose. I'm not sure if it was a real effect or I just wanted to get off the drug as fast as possible, but that is something I remember pretty clearly. This did get me in trouble near the end of the taper though, as I went much too fast getting off the last portion and what little sleep I was getting disappeared to almost nothing. 

 

I hope I am understanding right. You did explain it pretty well, and I would not sell the value of your experience short. It would be very useful for people to know the various concentrations of generic diazepam vs brand name (or some other standard brand). The differences in concentrations could also really trip people up if they are switching from shorter to longer acting drugs.

 

I am definitely healing in some ways, but I've also had my setbacks. I still have plenty of days where I'm not functional and sleep 3-4 hours. I can't even count the number of days I have gone to work on 4 hours sleep or less. I'm often behind on everything, because I either don't have the energy to get things done or am too uncomfortable with symptoms that I need to take care of, so it has been far from easy. Still not working anywhere close to full-time, but fortunately my work has been very accommodating. I'm always looking for ways to make things easier for myself or avoid potential pitfalls. I finally got a water filter a few weeks ago because I had been worried about pharmaceutical waste (in addition to PFAS etc) in the water. I'm glad I did it, but I am not sure I notice any difference, other than the water tasting better : )

 

I hope you enjoy the money you save once you finally get off the brand name diazepam. So glad you've found a doctor who actually helps you rather than hurts you. Not an easy thing to manage! (I certainly haven't). 

 

Hope you have more good days than bad 🙏

 

DG

[savinggrace]

Hi, DG....It is always so nice to hear from you.  I also appreciate the time you spend responding to me when there are so many other members that need attention.

 

If you understood my logic in strength of generic/brand, good on you!!!  I am not sure I am right on, but I do know there is a difference.  I did not feel too much difference in the early months of crossing over.  I had a pattern to the w/d of the crossover.  These last two crossovers have been terrible.  Two nights ago I slept two hours and last night, after so much fatigue, I only slept one hour before I woke up.  My sleep is utterly broken (and is what wound me up on these toxic drugs so many years ago).  I am very discouraged right now because I think whatever reduction is resulting from the crossover has finally caught up to me and my brain is screaming for me to take a break.  This would literally be a costly break....name brand continues to go up...example generic for 30 pills of diazepam is $11; brand name is $750!  More worrisome than that burden is the fact that it seems production of brand-name has slowed so much we are calling many many pharmacies who won't even try to find it for us.

 

My PCP has suggested that we try to get diazepam compounded.  I doubted it could be done but she said she talked  to a compounding pharmacist who compounds diazepam (the generic one I take has 7 inactive ingredients, which I am sure are not doing me any favors) who said he could compound diazepam in non-allergenic capsules (liquid never worked for me)  I have not talked to my doctor or this pharmacist yet, but I have a ton of questions.  I guess compounding pharmacies can be dangerous as they are not audited like regular pharmacies are.  That said, my doc really trusts them to be reliable and careful.  I am interested to discuss with the compounder what inactive ingredient he would have to use and how much (because surely the 7 inactive ingredients in my current diazepam takes up most of the weight of the tablet so I can't imagine I can get pure diazepam)  I am also worried about what my body is going to have to go through as surely my body will absorb the pure(r?) form differently.  All that said, getting a lot of excess, unnecessary chemicals out of my body might improve my digestion, pain, sleep, etc.  I am scared about trying this.  My psychiatrist is willing to work with my PCP on this but she won't write for compounded diazepam as she does not trust compounding pharmacies but is allowing for me and my PCP to make this choice.

 

So bumpy times ahead, but maybe in the long run, better?  I am looking at the inactive ingredients of my other drugs and wondering if I could have them compounded too.  There are over-lapping inactive ingredients in all 3 together, so it seems like a good idea to get whatever toxins out I can.   Perhaps I will then be really able to taper the diazepam (and others) at a faster but do-able rate.  I just turned 69 so at this rate, these drugs will kill me before I even make a dent in what is left.  I also wonder what this is going to cost, but surely it will be cheaper than the more than $2200/3 months we were paying.  Getting extra toxins out and hopefully (fingers crossed) being able to really taper diazepam would be a dream come true.  (Dreams get awfully small when In bad health!)

 

I hear you about feeling better while tapering.  At first with this crossover I thought I felt a little better with the momentum, but it has disintegrated and I am feeling it in my bones, my digestion and my sleep.

 

It is almost hard to read that you are surviving on 3-4 hours/sleep years after finishing a taper.  I sympathize with you as 3-4 hours of fragmented sleep is really all I get any more but I don't have to go to work.  My quality of life is non-existent but I still force myself to walk almost an hour every day so my muscles won;t atrophy.  I hurt if I stay in bed too much anyway so I literally count the steps ~6500 is all I can manage but at least I am moving.  Otherwise, life is lived at home, in my comfort zone, barely living but living non-the-less.  I look forward to my newest grandson coming in March...it will help get me through winter.  It's hard to be grateful most times but i do look for reasons to keep going.

 

I wish you a merry Christmas and improving health and stamina in the coming year.  I am very grateful for your interest and support.

 

Cheers!

Grace

[DataGuy]

I hope you slept better in the subsequent nights, @savinggrace. Awful sleeping that little. I don't always sleep 4 hours or less, but it does happen about half the time, so plenty of occurrences when I've got something important to do at work or some social function to go to 🥴. Doesn't usually make for a pleasant day. But when I sleep 5+ hours (never more than 6), it feels great. I don't feel 100% or anything close to it, but in comparison to the <4 hours, it's a dream. 

 

Have you considered updosing the generic diazepam as a temporary solution to the withdrawal symptoms? Not sure what your supply of valium looks like, but might help get you through if you are desperate. It may also tell you something about what symptoms are from the inactive ingredients vs what is due to the wd. 

 

I hope things go a bit more smoothly leading up to March. The amount the human body can endure is pretty incredible. My grandfather (who is in his mid-90s) has had cancer for 15+ years, is confined to a wheelchair, has dementia, lives in a long term care home, has glaucoma, recently broke his hip, and hasn't been able to be completely independent for a few years now. No one really knows how he is still alive, but we are all amazed. He recently got Covid for the first time and recovered from that as well (after a brief hospitalization). A few years ago I would have said he was just a regular guy. Now I am thinking he is just short of immortal. He has survived an astonishing amount of illness. He has never been someone you looked at and thought "he looks tough". Was always a very average height, average-to-slight build, moderate fitness etc.  

 

All of this is to say: I hope you surprise yourself with how much you can endure, and that things go much better than expected in the next few months. Then I hope things continue to improve 🙏

 

Merry Christmas, Grace : )

 

 

[Comfyquilt]

Hi @savinggrace I’m so so sorry to hear about your issues with Valium. I too struggle with this beast. I do not tolerate the tablets at all and use compounded liquid as it’s made with the same manufacturer every time. I would be more than happy to ask my pharmacist what the brand is as maybe it’s an option for you too. Hang in there ❤️

[savinggrace]

Hi Comfy Quilt, 

 

Thank you for your kind words. 

 

I tried liquid tapering (with the brand name years ago) and it was a disaster. My body absorbed it differently and I felt severe, acute withdrawal. I do have a compounder willing to compound dry capsules for me.  He gave me a choice of various fillers. My current generic has 7 fillers in it. He can compound it with just one. I will probably try this option next time I am due for a refill. My psychiatrist won’t write for compounder liquid but my GP will. Also Medicare doesn’t cover compounded drugs; at least not compounded diazepam. Thank you for your willingness to ask your pharmacist for me. I wonder if he uses polyethylene glycol (PEG). I developed an intolerance to that. 
 

Again, thanks for writing to me. I wish you well. 
Grace

[Comfyquilt]

Hi @savinggrace it’s so tough and I’m so so sorry to hear of your struggles. Valium really gets in claws in. My biggest regret in life is ever touching a benzo. I was given it for panic attacks after I stopped nursing my youngest.

 

My liquid has a base of ora-plus, it’s a compounded suspension. Yes my insurance does not cover this here either and a bottle is around $100 (😳) 

 

keep going we will get there ❤️

[savinggrace]

Thanks, Comfy.  I appreciate you reaching out and wish you the best.

 

Grace

[Ariel]

@savinggrace

Thinking of you and holding space for your experience, I keep you in my heart and prayers (such as they may be). 

I believe (in) you and respect your choices and the dignity and integrity with which you choose to live your life. 

You are extraordinary. 

Love, A.

[savinggrace]

Dearest Ariel,

 

Don't think that because you were gone you were forgotten!  Thank you so much for your kind and generous message.  I am in a continued downward spiral and I seldom post but I still care about my friends here at SA and cheer them on as they continue on their path towards healing.

 

I wish I could report that I am doing better, but I am not.  Life and chronic, increasing health/pain problems have held me captive to doing anything about tapering.  I have spent a year crossing over from brand name valium to generic and it nearly killed me.  I am still not done but almost there.  Then I will chip away .1 mg/time, if possible.  I am almost 70 and I do not hold much hope for anything.  My husband wished me peace today and I told him I could not think of a single thing I am peaceful about.

 

I am completely disabled now, able to walk but really, that's it.  Chronic pain and malnutrition kind of stop life dead in its tracks.

 

All that said, I am SO GLAD to hear from you and that you feel that you are headed towards healing, even if not at the pace we all wish for.

 

Thank you for thinking of me.  I seriously have no one in my life except my husband now and we are at odds most of the time because life has taken its toll.  So I appreciate your greeting even more.

 

Grace

[DataGuy]

@savinggrace I'm sad to hear about your downward trajectory. Getting off these drugs is difficult even for younger people in pretty good health. For people who are older and already have health problems, it is downright scary.

 

I'm sorry things have not turned out the way we all hoped they would. I don't know if there is anything I can say to console you, but I am sure you have had many things to be thankful for in your life. For me, even though the last few years have been much more difficult than I anticipated, I'm grateful I have the truth, even if I don't have many things that other people of my age and education have. 

 

Wishing you peace and love,

 

DG

[savinggrace]

Thank you Data Guy.  I just read an article about Seeking Joy.  When your body is failing you, in just about every way and you live with constant pain and downright misery, It is really hard to overcome it.  The pall of pain and disease hovers over everything you experience and tamps it down.

 

I have some very unsettling family stuff, and a long family history of it as well, that makes me wonder all the time what on earth all this suffering is for...

 

I still am going through the motions of the things I can do...ie: planning and shopping for my flower gardens, visiting my newborn grandson but the literal pain kind of overshadows everything.  These are fleeting moments.

 

I have had a hard life.  That said, I put 150% into everything I did and I experienced many things that I am so grateful for...until life fell apart and the polypharmacy began taking its toll.  I can't really go back.  The physical damage is permanent and can't be reversed.  All I can do is live from one day to the next.  It is hard not to despair and succumb to the fear of how much worse this is going to get.  I don't come to SA often, but I am not under the impression that health issues and chronic pain are the predominant withdrawal symptoms so it's hard to know what is and isn't attributable to the drugs.  I have all the mental stuff, too, (depression and anxiety mostly)  though I have always tapered slow enough to avoid the depersonalization, anhedonia, akathisia and other scarier mental w/d symptoms.  I knew I could not do both.   It seems the drugs attacked me physically, and it's a "chicken or egg" argument but I remember a therapist telling me 25 years ago "if you weren't so sick (and I was only on amitriptyline then; but I had other serious chronic issues) you would cope fine."  25 years later, I still agree with him.  I know, and have navigated the mental stuff for 40 years.  As I near 70, the physical stuff is what drags me down.  Unfortunately, it has dragged down two out of three of my sons as well, though their problems came with abusing alcohol/recreational drugs.  It doesn't help.  Addictions/dependence have destroyed my life starting with losing my father to alcohol at the age of 6.

 

I am indeed grateful that I had the foresight to go very very slow in my taper, and even stop it all together for a while, in order to be able to do and experience things in life.  I cannot and do not compare my life to others.  The hardest part is that they compare their lives to mine and make me feel like this is my fault!

 

I am also grateful that you have taken the time to listen to me.  As I always say, don't feel obliged.  You have your own self to take care of.

 

I wish you well.  You are a good person.

Grace

[Ariel]

@savinggrace

Oh Grace.

I hear you.

I'm so sorry you're going through this. 

My heart goes out to you. 

So much love, 

A.