Rapid metabolizers support group

[[Ki...]]

After the donation I felt pretty shook up- they do something during the " return" process that binds to calcium or something weird and long story short I felt like my whole body was vibrating. All weekend I just felt like I had been in a very minor car accident or something, just shaken up. Hopefully its gone and I wont get hit next week like cut and hold people do.

If you have low cholesterol you are right thats not the way to go. I just started out on a tablespoon of grapefruit juice about an hour before my dose at bedtime. I didnt notice anything after a few days so I upped it to an ounce which I could tell was too much after a few days. It really is just by feel- some days I didnt have any, some days a little more but it never took more than an ounce a day to make a big difference.

[[...]]

After the donation I felt pretty shook up- they do something during the " return" process that binds to calcium or something weird and long story short I felt like my whole body was vibrating. All weekend I just felt like I had been in a very minor car accident or something, just shaken up. Hopefully its gone and I wont get hit next week like cut and hold people do.

If you have low cholesterol you are right thats not the way to go. I just started out on a tablespoon of grapefruit juice about an hour before my dose at bedtime. I didnt notice anything after a few days so I upped it to an ounce which I could tell was too much after a few days. It really is just by feel- some days I didnt have any, some days a little more but it never took more than an ounce a day to make a big difference.

 

Thanks kitty ..... No more donating plasma for you for now!

[[Ki...]]

Agreed!!!

[[Ki...]]

Ok it took 8 days to hit. I had some bumpy days last week but thats expected. Hopefully this will be it. And if anyone ever asks- dont donate during a taper😖

The bergamot does not seem to have enough oomph by itself to help slow metabolism. Im taking one and still need my 2 tb grapefruit juice to be able to dose once a day.

[[Rh...]]

Wow, been looking for a rapid metabolizer group!  I'm ONE of you...and my taper had been horrible from start till this very second.  I'm down to 2.6 mg's and it's been HELL!!!  I too was put on several SSRI's before my genetic testing and now I know why they never worked!  Genetic testing should be done by anyone looking to get on any prescriptions that affect the brain and insurance should fully pay for it.

 

So enough with my rant...I don't know what to do at this point.  I was on temazepam and crossed to V because the WD's from temapzepam were worse.  I've been sick for almost a year and a half now and still tapering...

 

I feel all of you in this group!

 

Rach

[[Ki...]]

I agree - my doc would not even look at my DNA results even the ones specifically for drugs- and with me taking 2 that say DO NOT CONSUME GRAPEFRUIT on the little add on warning labels- geez!

I can taper a little easier using the grapefruit but again its a matter of finding how much to use. I did an ounce at night every night and it really threw me- way too much. I was classified as ultra rapid on valium and when it broke down the metabolites it said temazepam was a metabolite, that one I was just listed as rapid instead of ultra rapid so I keep the temazepam around a little longer. I have no idea if that matters or not. I adjust alomg the way- if I feel shaky and need to nibble a little bit of my dose around dinner I know its a 3 tablespoon night but if I felt tired and weak to only use a tbsp or none at all that night. I wish I could remember the posting persons name that used cimetadine, his/her doctor ordered it if I remember right and they worked out an appropriate amount. I know some folks will yell about it saying " oh you are just trying to make it easier" I had some of those comments a while back. They dont understand- all we want is for it to work the way its supposed to work! Hopefully you find a way to get you to a better place to taper. Its hard enough with things working the right way to have to deal with the addition of not knowing when/ how to take it!

[[Rh...]]

Yeah, aren't doctors wonderful!  Im just not sure if I should push through and stick out on V or switch to something else.  Maybe K or clonazepam, I think those are the same???  I'm just so sick and almost bedridden at this point.

 

So are you using temazepam or V?  And you use the grapefruit juice and dose once at night only?  I have to dose 3 times a day...this stuff is so confusing and add our problem and it's impossible.

 

Well I guess I'll call my doctor and see what he thinks I need to do at this point.  Good luck and let me know if you find that other post. 

 

Rach

[[Ki...]]

Im sorry you are having such a hard time. Maybe trying to even it out a little might make things a little smoother- you could ask your doc about using tagamet to slow down the metabolism rate. K and clonazepam are the same, yes. Im not sure if its processed the same way- if you are a rapid metabolizer of both that means same problems. I just take valium but as it breaks down one of the metabolites is temazepam, and the report said I dont metabolize that as quickly. It probably doesnt really mean much in the long run though!

[[Rh...]]

Yes, I have read that V metabolizes into temazepam.  Luckily, or unluckily in my case, V is the only benzo I ultra rapidly metabolize.  I did try and switch to Librium, but I could not tolerate it.  I am highly sensitive to any medications, supplements and even vitamins and always have been.

 

I have a call into my doctor and will see what he suggests.  I've thought of giving Remeron a go for my non-existsent appetite.

 

Thanks!

 

Rach

[[Ki...]]

I cant taper anywhere near as fast as you do without going bonkers. I cant even taper at the " normal" rate of a half mg a month, I push it going that much in 6 weeks. I read that rapid metabolizers are the ones who have the hardest time with " successful treatment" but Im not sure if that includes tapering- but after a year of reading this forum it seemed the rapid folks just did better going a little slower. I really hope you find the solution- it is out there! Sometimes its just hard finding what works best. Good luck!❤️

[[Rh...]]

Well I push it and then pay dearly...I'm learning as I go.  Slowing down now as I can tell I'm in or going into acute.  My brain starts to go crazy along with all my other WD stuff.

 

What do you mean by ultra rapid metabolizers seem to have a hard time with "successful treatment"?  I know I cannot really tolerate any benzos or other prescriptions...in fact my testing said I could not take any SSRI's many antipsychotics and a host of other things.  I've never needed any of Jose, andxhope to never have to take them, but I do find it a blessing knowing.  Do you think they mean we should have never been prescribed them in the first place as it's not a "successful treatment"?  I mean I see that statement to mean if we rapidly metabolize them, then they don't work for us like other people and we should not be given them as a treatment option.

 

Don't know if I make sense, but yes, we just have to find our paths of tapering.

[[HO...]]

Where were you all tested for this. What kind of doctor ordered the lab work?

[[Rh...]]

I think you can go to 23andme and get them???  Not sure though.  You could also ask your doctor and see if they are willing to do it.  They are fairly "new" so not a lot of doctors understand what to order or how to read the results.

 

I am seeing a doctor who "specializes" in benzo WD and he thought, since I was having such a hard time getting off the V, that there might be a metabolism problem.

 

Others might chime in to let you know what they did and the labs they used.  Mine was GenoMind.

 

Good luck!

[[Ki...]]

I did 23 and me. After they sent the codes back I put them into Livewello which was like 20$ and one called Promethease which was only $5.00. I got so much info not only about drug metabolism but why I have other conditions and how likely I am to respond to different treatments-it was well worth it

[[La...]]

Thank you so much for starting this thread. I think this may explain why my sister is having such a difficult time.

 

We are very interested in getting the testing done.

 

Just so I'm clear on how to do this, first you go to 23andme and get the kit (saliva), then they get the results to you and then you have to go to a couple of other sites Livewello and Promethease and then you get the info on how various drugs affect you, and which things you are a rapid metabolizer of?

 

 

[[Ki...]]

Yep. Apparently 23 and me used to give you all the info but the FDA stopped them so now you have to get an interpretation elsewhere. But its very straightforward. I actually liked the promethease better but I think it was just a little easier for my benzo brain to use on my phone! But yes it does list your drug pathways and gives a large list of drugs affected. Very helpful stuff to know.

[[La...]]

Okay, I went to 23andme and I'm not sure which kit to get-

 

Is it the ancestry kit 99$

or the ancestry and health for 199$  (I'm assuming it's probably this, but want to be completely certain, b/c didn't see info about metabolizing drugs, but maybe that is from where you send the 23andme data)

[[Ki...]]

Health. All the ancestry one has is heritage- no medical info at all.

[[La...]]

Okay, great, thanks so much. God, how I wish we knew about this before we ever got involved with these drugs

 

We're really thinking that she might be one of these rapid metabolizers

[[sh...]]

Yep. Apparently 23 and me used to give you all the info but the FDA stopped them so now you have to get an interpretation elsewhere. But its very straightforward. I actually liked the promethease better but I think it was just a little easier for my benzo brain to use on my phone! But yes it does list your drug pathways and gives a large list of drugs affected. Very helpful stuff to know.

Hi,

 

I am so grateful for this thread. I just started looking into my Promethease report, and will get Livewello soon.

I was wondering if you could give your opinion on other industry labs that do Pharmacogenetic testing.

I checked lab panels offered by a couple listed on CPIC. One of them is Genelex. It has a 5-gene panel for $390 , and a 22 gene panel for $479 that covers over 80% of all drugs. They have drug-drug, drug-gene, and cumulative drug-drug-gene analyses. And they do over-the-counter medicines, herbal and dietary supplements, and other drugs such as marijuana (he mentioned one enzyme only - there are at least 2 I read) - the latter for their enzyme inhibition/induction impact on drug therapy.

http://genelex.com/pharmacogenetic-tests/

 

Other than the huge price-tag, they also do not test for the 5 UGT, and SULT enzymes involved in estrogen and other hormone metabolism. So no BHRT therapy recommendations either. Some of the UGT are also in Benzodiazepine metabolism pathway, but their reason for not including them in the 22-gene panel is "they are not clinically significant" 

 

My reason for testing is I cannot tolerate most if not all blood-pressure drugs. I develop the nervous/psychiatric side-effects which often cause my Blood Pressure to be higher with the med than without it. Getting off the drug is then a major issue given the ubiquitous cross-tolerance of Diazepam with other drugs, perhaps because some of these BP drugs also act on the GABA system.

 

My family is moving overseas. With my Adrenal Exhaustion (Stage III), and Tolerance withdrawal of several years, I would likely get medicated with Corticosteroids, BP drugs, antibiotics that I might have adverse reactions to. By getting tested, I hope that if I get severely compromised, the Drug-Gene analyses will help someone else make a safe choice for me.

 

Again, many thanks for the information you have shared, and hope to hear more from you. 

 

-Shisham

[[Ki...]]

Wow, that is quite an undertaking! I had never heard of that company before- or the tests for that matter! This is quite an education- thanks for posting it! It sounds like you can get a LOT of info from it. To me this is so valuable. I am still shocked that neither of my docs were interested in my reports. Especially since the drugs I am on are all flagged! But nope, not one whit of interest. I hope you can find some info that clues you in to your reactions to the BP meds. I take nadolol and have never had any problems with it.

I dont understand them telling you hormones are not clinically significant. That sounds like an opinion rather than a fact but what do I know!

It really is a great help to understand that there are real reasons why some of us have to dose differently or use other methods to alter our metabolism. I cant count the number of times people have accused me of using grapefruit to make my dose " stronger" or yell at me for doing something the sticker says not to. I tell them I just do it to try and be as normal as possible. We all need any help we can get going through this mess!

Good luck with your report, whichever one you choose. Its so good to have as much info as you can to make the most informed decisions.

[[Rh...]]

Wow, I knew there were a lot of other tests, but not to that extent.  I'm glad I have the little info that I received from just one saliva kit.  I still don't understand some of the other stuff my report says, but I now have a list of over 60 prescription and OTC drugs that I can and cannot take.  I love knowing that, but my doctors either don't share my enthusiasm or have no idea what that means other than which drugs I cannot and can take.  One of my doctors said those tests just provide too much info and hen make things harder.  I was amazed, because he was the one that originally tried to put me on three of the medications that my genetic report said I cannot take and will have paradoxal or adverse reactions too.  I told him it would have been nice to know I had these metabolism problems before he prescribed them, and it would have saved him a lot of paperwork and visits and saved me from a lot of unnecessary suffering m, ER visits and sickness.  But again, who am I!

 

I was also told by another doctor to try the grapefruit juice, so there are some doctors that understand the Valium rapid metabolism problem. 

 

Well, enough of my rant...good luck to us all!

 

Rach

[[Ki...]]

"Too much info" translates to "Im not going to bother learning all that stuff"!

[[sh...]]

Wow, that is quite an undertaking! I had never heard of that company before- or the tests for that matter! This is quite an education- thanks for posting it! It sounds like you can get a LOT of info from it. To me this is so valuable. I am still shocked that neither of my docs were interested in my reports. Especially since the drugs I am on are all flagged! But nope, not one whit of interest. I hope you can find some info that clues you in to your reactions to the BP meds. I take nadolol and have never had any problems with it.

I dont understand them telling you hormones are not clinically significant. That sounds like an opinion rather than a fact but what do I know!

It really is a great help to understand that there are real reasons why some of us have to dose differently or use other methods to alter our metabolism. I cant count the number of times people have accused me of using grapefruit to make my dose " stronger" or yell at me for doing something the sticker says not to. I tell them I just do it to try and be as normal as possible. We all need any help we can get going through this mess!

Good luck with your report, whichever one you choose. Its so good to have as much info as you can to make the most informed decisions.

Kittybeanbag,

I am so grateful to you for suggesting Nadolol. I had given up on finding any pharmaceutical drug - least of all a beta-blocker that does not have restlessness, anxiety, or panic attacks as side-effects. Nadolol does not have any of these as far as the FDA listing goes. I was going through adrenaline rushes after my Clonazepam gone bad sue to summer heat, and then a reaction to taking CW Hemp Oil orally instead of sub-ligually; details here:

http://www.benzobuddies.org/forum/index.php?topic=165140.msg2401657#msg2401657

My Blood Pressure and Heart Rate came down, and so far I am not experiencing withdrawal on days I don't take it. I am worried about it lowering my already low cortisol, so am trying to take 5-10mg once in 3 days. Thanks for sharing the dose you take.  Taking the 20mg the doctor wrote script for would have made my AFS fatigue much worse. I found a link saying that:

http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing/the-perils-of-standing-ii-drugs-for-chronic-fatigue-syndrome-mecfs-patients-with-orthostatic-intolerance/treating-chronic-fatigue-syndrome-mecfs-propranalol

But I am a little concerned about it being non-selective - so it slows down not just the heart, but  kidneys, lungs, gastrointestinal tract, liver, uterus, vascular smooth muscle, and skeletal muscle and as an effect, could cause reduced cardiac output, reduced renal output amongst other actions. My liver function is affected by the AFS which has caused reactive metabolite overload, estrogen dominance, etc. I cant take most supplements for the same reason.

But it's not having the anxiety side-effect is a life-saver for me. Thank you so much again!

If you have experience with other BP meds that dont cause neurological/psychiatric side-effects, please do share. Thanks!

Sorry it took me so long  to respond. I am still sick. I did not get to learn anything more about pharmacogenetics.

[[Ki...]]

I have never heard of smaller doses of nadolol ( or any of the non specific betas) at smaller doses having a big effect on organ function, but anything is possible. The starting dose for CV like HBP tachycardia etc is around 40 mg a day if I remember right. I never had to increase and its been almost 40 years I have been on it. I have taken too much and it did make me tired- taking it twice in one day oops! But it does seem to be very well tolerated at these small doses. I hope you dont have any problems with it. The reason I wanted the non specific was because I wanted the anti anxiety effects- get rid of those butterflies in the stomach!

Im going on a trip soon and Im not sure how to lug around grapefruit juice so Im going to try just grapefruit for a while and see what happens...