Desperate - benzo withdrawal trouble

[[Ph...]]

Hi there,

 

I am posting here on behalf of my mom, as my family and I are in a desperate state and not sure where to turn. My mom has had a difficult 7 years of dealing with withdrawing off of a benzodiazepine (Valium).

 

To start, she has learned through her taper process that she is "highly sensitive" and has multiple chemical sensitivity.  After experiencing withdrawal symptoms back in summer 2009 from using bioidentical hormones (a steroid) for a short 3 weeks (which at the time she was unaware these were steroids and symptoms were from withdrawal), she ended up in the hospital after not being able to sleep for several days and was prescribed Ativan. After taking Ativan for 3-4 weeks, she decide to stop and after more testing she finally figured out she was suffering from withdrawal symptoms through her own research. She found a doctor willing to work with her and converted to Valium to begin her taper.  She started at 4mg and and successfully tapered (Ashton Method) over a 9 month period.

 

In the summer of 2012, a wave hit and she experienced severe withdrawal symptoms and spiraled out all over again. After several hospital visits, she reinstated back on Valium, eventually stabilizing at 7mg, and started an even slower micro-taper from there. In March 2016, she was still not feeling well (even after a 4 year long taper) and decided to hold at 1mg of Valium for several months to see if the withdrawal symptoms would lighten.

 

At the end of October, she crashed with brutal and intense akathisia, extreme fight or flight and withdrawal symptoms. She had 3 visits to the ER.  We tried up-dosing to 1.3 mgs to see if that would relieve the restlessness, but it did not. Since then (about 7 weeks), we've been hovering around 1mg of Valium to try and stabilize her, but nothing is working. We are trying to find a stable dose so we can begin the withdrawal process again. 

 

She has lost at least 20 lbs (she cannot keep food down due to nausea, gagging, and extreme food sensitivity), has severe burning throughout her entire body-especially when she takes a dose of Valium, she at times feels overdosed or as if the drug is now acting paradoxical in her system, shortness of breath/shallow breathing, several panic attacks throughout the day, sleepless nights (still), constant fight or flight, slurred speech and stuttering, body spasms, a huge knot-like feeling in her gut, extremely depressing thoughts, and extreme food and product sensitivities (even to the most natural shampoo), and I truly could go on... She has given up all hope. If we up-dose the Valium, she feels sluggish and the benzo feels toxic in her system. If we give her less Valium, she experiences withdrawal.

 

She is in agony and feeling pain.  She/we are looking for any advice to help with this in the short run.  Our number one goal is to reduce her pain/agony, stabilize the dose, and get moving again on the taper - but it truly seems like nothing is working.

 

Over the years, we (especially my mom) have done immense amounts of research on benzo taper and withdrawal and we are truly at a loss as this crash came out of nowhere. We fear there is no way out and are hoping someone out there has experienced something like this and found a way out. All she wants is relief, as she's in constant agony and complete fear day in and day out.

 

Thank you in advance for any comments or advice. We are in tears as we write this...

 

PhiCal & family

[[Be...]]

I'm very sorry to hear all this. Valium destroyed my life in a mere year and a half.

I don't know what to say about your Mum, but my heart goes out to you as someone who knows the devastation this drug causes.

I'd like to say what I would do to the HQ of the drug company which pushes this shit KNOWING THE SIDE EFFECTS, but I imagine I'd be banned.

BASTARDS. I'll leave it at that.

[[Be...]]

I'll ask one thing: when you get her on a high enough dose, does she remain stable? It just seems like you're getting stable then going straight into a taper.

What I'm asking is, is there a possibility she could just stick at a higher dose, or is she symptomatic all the time?

[[Ja...]]

I can relate a lot to this post

I am sorry to hear about your mother-- this is awful

My story also included a steroid and kindling and reonstatemenf and micro taper

I was doing "ok" until I hit 1mg

Mind you I was also on remeron

Akathesia burning terror prickling and severe pain literally happened out of the blue

The only way I stabilized was by holding 1mg(it's been two mos now) and adding gabapentin

I hate to add more meds but my Akathesia and terror was so so so bad and my physical pain literal agony it was a life or death matter

My doctor said I don't think you will make it and that I was kindling to be in that kind of withdrawal pain.

So gabapentin started and within 24 hours I was able to go on a hike

I know it's trading one problem for another

I have no idea how I am going to get off

No idea

But... What my plans are are to start Jan 1... Many ppl here feel micro taper actually causes MORE damage especially from short term usage as I had. I regret reinstating and doing this.

One wise doc said " get off and let your GABA heal"

So..... I am going to taper slowly and if it gets to rough either jump or finish the last bit with help in a hospital

I have Akathesia too and it's the most dreadful symptom known to man.

Consider gabapentin

Other options that were suggested were baclofen and lyrica

Remeron nght help your mother too

I am highly sensitive as well. To everything.

Where are y located? There is also NAD iv natural Aminos but I believe I am too sensitive for that too...

Good luck

Lmk how she does

[[Ph...]]

Belfast2016, thank you. We have not been able to find a high enough dose, as she starts to feel almost paradoxical to the Valium and "overdosed" if we updose even the slightest amount (ie, even .3mgs). This has included either complete drowsiness or a feeling of toxicity throughout her body OR it makes the fight or flight feeling worse and she is completely revved up after taking her dose. If we try to cut a small amount, she experiences extreme withdrawal. It feels like a catch 22. Right now we are trying to hold at 1mg but nothing is changing... she had been holding her taper at 1mg since March of this year (7 months) and was doing okay (not great) on this amount before the crash. We do not know what happened.. so horrifying. Is it best in this extreme situation to now get off as quickly as possible, or pray to find an amount that stabilizes her? We do not know.

 

Jackson1, thank you as well - I'm sorry to hear of your experience. We are in complete fear of introducing other drugs because of the hypersensitivity. During one of our trips to ER, she was given a children's dose of Benadryl and it caused her fight or flight to go through the roof, even with that tiny amount. Over the past 7 years, she has literally not taken anything in addition to the Valium (not even a Tylenol, natural supplements, vitamins, you name it) as it would cause a reaction. Her diet was eventually limited to about 6 foods (and has now been cut down to 3, barely getting those down) I agree getting off the drug to let the GABA heal is the ultimate goal, but it feels like it is impossible to continue the taper process itself at this point... I'm curious, when you say you may get help from a hospital to finish your taper - what kind of help would you seek there/from which unit? Also, do you mean you'll tell them of your taper troubles and hope they admit you? During each of our trips to the hospital (ER), it's been extremely hard to seek understanding of our situation, so that is why I ask. We are located in Chicago, IL.

 

Thank you both for responding promptly... I fear we are running out of time

 

PhiCal

[[Ch...]]

I'm going to go back and read your intro, but one question first: has she been given a fluoroquinolone antibiotic at any time?

[[Ch...]]

There are two 'benzo-wise' doctors in Illinois on this list: http://www.benzosupport.org/benzo_wise_doctors.htm

 

You are in a legal state for this thread: http://www.benzobuddies.org/forum/index.php?topic=165140.msg2280981#msg2280981

In your situation I would read with an open mind and explore the science behind it.  Nuff said, I don't want to sound like I am 'promoting'.  I am not.  But if your mom is chemically sensitive, this may be something to explore.

 

I would also check in with this support group for those tapering Valium: http://www.benzobuddies.org/forum/index.php?topic=96753.18780

 

I wish I could be of more help personally, but I haven't taken a long-acting benzodiazepine and I think in your mom's case we all need to be very prudent in our suggestions to you. 

 

1mg of Valium is a low dose ...but we are all different and some people continue to titrate or micro taper far beyond that point.  The folks on the Valium/Diazepam support thread above may have some good suggestions for you as far as where to go next in her taper.  If she is truly paradoxical, perhaps it's safe and the right time to get off of it completely.  I am not one to advise about that, I have a lot of knowledge but not specifically about when to jump from Valium or what to do when paradoxical to it.

[Guest [su...]]

Hi there,

 

I am posting here on behalf of my mom, as my family and I are in a desperate state and not sure where to turn. My mom has had a difficult 7 years of dealing with withdrawing off of a benzodiazepine (Valium).

 

To start, she has learned through her taper process that she is "highly sensitive" and has multiple chemical sensitivity.  After experiencing withdrawal symptoms back in summer 2009 from using bioidentical hormones (a steroid) for a short 3 weeks (which at the time she was unaware these were steroids and symptoms were from withdrawal), she ended up in the hospital after not being able to sleep for several days and was prescribed Ativan. After taking Ativan for 3-4 weeks, she decide to stop and after more testing she finally figured out she was suffering from withdrawal symptoms through her own research. She found a doctor willing to work with her and converted to Valium to begin her taper.  She started at 4mg and and successfully tapered (Ashton Method) over a 9 month period.

 

In the summer of 2012, a wave hit and she experienced severe withdrawal symptoms and spiraled out all over again. After several hospital visits, she reinstated back on Valium, eventually stabilizing at 7mg, and started an even slower micro-taper from there. In March 2016, she was still not feeling well (even after a 4 year long taper) and decided to hold at 1mg of Valium for several months to see if the withdrawal symptoms would lighten.

 

At the end of October, she crashed with brutal and intense akathisia, extreme fight or flight and withdrawal symptoms. She had 3 visits to the ER.  We tried up-dosing to 1.3 mgs to see if that would relieve the restlessness, but it did not. Since then (about 7 weeks), we've been hovering around 1mg of Valium to try and stabilize her, but nothing is working. We are trying to find a stable dose so we can begin the withdrawal process again. 

 

She has lost at least 20 lbs (she cannot keep food down due to nausea, gagging, and extreme food sensitivity), has severe burning throughout her entire body-especially when she takes a dose of Valium, she at times feels overdosed or as if the drug is now acting paradoxical in her system, shortness of breath/shallow breathing, several panic attacks throughout the day, sleepless nights (still), constant fight or flight, slurred speech and stuttering, body spasms, a huge knot-like feeling in her gut, extremely depressing thoughts, and extreme food and product sensitivities (even to the most natural shampoo), and I truly could go on... She has given up all hope. If we up-dose the Valium, she feels sluggish and the benzo feels toxic in her system. If we give her less Valium, she experiences withdrawal.

 

She is in agony and feeling pain.  She/we are looking for any advice to help with this in the short run.  Our number one goal is to reduce her pain/agony, stabilize the dose, and get moving again on the taper - but it truly seems like nothing is working.

 

Over the years, we (especially my mom) have done immense amounts of research on benzo taper and withdrawal and we are truly at a loss as this crash came out of nowhere. We fear there is no way out and are hoping someone out there has experienced something like this and found a way out. All she wants is relief, as she's in constant agony and complete fear day in and day out.

 

Thank you in advance for any comments or advice. We are in tears as we write this...

 

PhiCal & family

 

I feel so sorry for your mom and your family. You wrote about being sensitive against medicine. I am. I have a genetic problem with my enzyme in the liver that metabolise Valium. I have big trouble of come off this drug. And I feel "high as a kite" on small doses. Have your mom been tested for this? The enzyme is in my case CYP2C19 it is the major enzyme that metabolise Valium. The other is CYP3A4, I think Atvian is also CYP3A4. The last one is function in my liver but with real slow pace. My genetic problem make the w/d much longer than in other humans. And for me a 5 mg can be as high as 20 mg or more. 1 mg can be like 10 mg. To cut from 1 mg is impossible for me it is like going CT...

So I fear for the day when I get closer to zero....I have big problems now after a cut. It worked fine down to 10 mg. Just a thought...

//Sun

[[Be...]]

I wish I knew the answer to your question.

These guys above ^^^^ seem to know about stuff which could well be relevant tho.

 

I'm sensitive but not that sensitive, as I did stabilise at 3mg. I know the hell of WD all too well tho. And the profound ignorance amongst doctors. :/

[[Ri...]]

I had major problems with Valium very much like your mom's.  I too am very sensitive to drugs and when the doc first put me on Valium I had no idea that it was the drug exasperating the issues I spent the entire summer walking around the block in 100 degree heat I lost 80 pounds  and looked like a  method head.  I went through I dont know how many ssri and other psych drugs until I said enough.  I had a friend who gave me a xanax and that helped somewhat but I was to afraid to take more than a crumb at first.  The doc also put me on Depakote which I did not take for at least 3 weeks.  One  night I finally got desperate and took the depakote and .25 MG Xanax I felt somewhat better within hour's.  I continued this and by about day 3 I was doing well enough to be able to sit down for short periods. I upped the xanax to .50 mgs per I took .25 in the am and .25 in the afternoon.  It took about 3 months of this regime before I can say I was able to relax and watch TV for a bit. At that time I started weaning off of the Depakote and found that fairly easy to get get rid of.  I was only taking 150 mg per day a very small dose.  This was over a year ago and I have been doing a liquid taper from the Xanax and am now down too .177 of Xanax.  I have taken it very slow and I don't care if it takes another year to get off of.  I have been able to maintain my life with minimal side effects.  I did find out through a gene test that my body does not get along with Valium.  Xanax can be harder for a lot of people due to its short half life.  There is an extended release but the problem with that is as you get below .25 mg it no lomger acts as an extended release because you have to cut the pills and the coating is what makes it extended.  I guess my whole point is it might be a good idea to see if another benzo may work better for your mom and then stabilize and taper from there.

[[pa...]]

Maybe I missed it in your post but have you tried an elimination diet?  And is she away from all chemicals?  I ask because I think often we are so focused on one issue that we miss another.  In my case this has happened many times.  Also I have a family member who has MCS and food is often a huge part of the picture.

 

If she is willing to go ultra strict with food you may get somewhere.  There are many elimination diets out there.  I have to be on a super strict food plan all the time because many foods cause severe physical and mental problems. I can more easily tell you what I CAN eat as opposed to what I CANNOT eat.  That is how limited I am.  They say it is genetic and in my family this is apparently the case.  But I believe it can also develop from "leaky gut" and various digestive issues.

 

Anyway just a thought!  Safer foods for me are chicken breast, cooked carrots, sweet potatoes, white rice.