9 months off benzo and still having very severe symptoms.

[[Mi...]]

Hello to All,

I'm constantly searching all stories and really can't find someone with such a severe symptoms like my wife has (after 9 months with no benzo, after almost cold turkey, forced "tapering", without stabilization, in 6 weeks only, by doctor). And these are getiing stronger (or maybe it is just her impression due to weakness, exhaustion...?), anyway it becomes unbearable to my wife anymore and driving her to thoughts about any end to this.

Whole store of my wife is here: 

Symptoms below, starting with the worst:

- suffocation, hardly breathing, feeling like drown, chest squeezing, actually all body, muscles is squeezing, unable to talk, crying, yelling, horrific case ( especially in the mornings, can last 2-6 hours)

- extremely strong belly pain

- strong internal trembling , feeling like some insects eating body from inside, almost whole day long - like internal akathisia. Horrific feeling like has to take the skin off...

- head - brain burning and itching

- skin burning and itching

- insomnia ( only 0- 4 hrs sleep) 

- akathisia (external) - walking 1 -2 hrs daily

and many minor symptoms which she could stand if she hasn't been so exhausted. 

These severe symptoms are every single day, already 9 months long with no benzo plus 6 weeks tapering. In fact it is worse and worse.

What I find, people have such a symptoms after C/T but it usually either settle down after 2-3 months or people reinstate. 

If we knew it was that bad like this we would have reinstate benzo, but now after 9 months this would be extremely dangerous game I believe.

Or maybe someone went through such a horrific withdrawal and could give some hope...please.

Thanks to all...

 

[[Ma...]]

That is just too long to be suffering so much. Unfortunately many do.

Is she able to make it to the doctor to get blood work, a physical? See if she is deficient in any vitamins. Perhaps starting on some microdose of a supplement can ease some of her symptoms. Magnesium, for example, can help with sleep if she can handle it. B vitamins are crucial. 

Additionally, Ashton states that small doses of Doxepin can be beneficial for both sleep and depression, ir a small dose of an antidepressant that works for her. I encourage she take a gene test which will tell you exactly which medication her system can metabolize.

A lot of people take Gabapentin which mimics GABA but some find it difficult to stop.

Adding anything is rather controversial on this forum so please do what is right for your wife without being swayed by group think.

Can she manage Tylenol?

I used ice caps from Amazon-around the clock-for my burning brain and other packs on my body.

I also bought oxygen cans from Amazon to assist my breathing. Probably a placebo effect but it worked for me. And an prescription Albuterol inhaler.

A heating pad could possibly help her bellie in addition to the clean diet. Probiotics are also useful. I drank Kefir which is also a natural antibiotic and it worked like a miracle. Also eating in small amounts every 2 hours, like plain oatmeal especially immediately in the morning. Gut health is just paramount.

I really hope you can find something to help.

Edited March 6 by [Ma...]

[[Mi...]]

Thank you Mary1, we will check things you mentioned which we have not yet checked. 

All vitamins, minerals are under control so at least this part is ok. 

Oxygen cans sound promising...definitely will try it. 

Praying for any improvement every day.

Thank you.

 

[[PE...]]

Hi @[Mi...]you making a heroic effort to help your wife good job!

I started taking quentapine a month in after I stopped doing benzo and it had great impact on my wd symptoms. 

The breathing part CAN be anxiety related but can of course be something else. 

Anakthasia was my true enemy the whole last year and at it's worse i walked for 15 hours a day. Limping badly from the pain it caused me. It slowly subsided. 

 

[[or...]]

I truly believe if I were in either yours or your wife's place, I would truly consider reinstatement.  If these symptoms she is having are destroying her, which it sounds like the worst symptoms I've heard so far, I would try what Ashton says in the following, from page 92-93.  It sounds the worst just trying this, maybe starting at same original dose, and possibly needing more, would be better than this sort of suffering.

This is just my opinion, and I only experience a CT one time and reinstated after just a few days it was so awful. I cannot even imagine what your wife is going through, but finding a doctor that will do this for her is an option.

From Ashton Manual:

Reinstatement after withdrawal? Many benzodiazepine users who find themselves in this
position have withdrawn too quickly; some have undergone 'cold turkey'. They think that if they
go back on benzodiazepines and start over again on a slower schedule they will be more
successful. Unfortunately, things are not so simple. For reasons that are not clear, (but perhaps
because the original experience of withdrawal has already sensitised the nervous system and
heightened the level of anxiety) the original benzodiazepine dose often does not work the
second time round. Some may find that only a higher dose partially alleviates their symptoms,
and then they still have to go through a long withdrawal process again, which again may not be
symptom-free.

[[Ma...]]

If you do choose to reinstate I would encourage to to google Beating the Benzo and talking with Emma Saunders.

She reinstated successfully and knows many who have done the same. She’s very kind and will speak with you for free.

You can watch some of her interviews on YouTube for a reference point of what she experienced.

[[Co...]]

I have no experience with reinstatement but I was basically the same and worse my first 6 months of tapering after reducing half and immediately becoming destroyed within days usage. I did not go back up. I held for months and then reduced afterwards. I knew my life was over, vomiting 24/7, no sleep, no eating, no talking, etc etc etc. I have improved slowly slowly slowly over the past year. Was she okay on the benzo before? For someone like me reinstating of updosing was not an option because of how sick I was on them... Have you tried looking into alternative therapies? Some people are helped with hyperbaric oxygen therapy.

[[Mi...]]

Many thanks to All for advices and help. 

We will check all options you have mentioned. Step by step but we have to find something what could help...it is too much already...

 

Thank you All.

 

[[Mi...]]

Hi new peppe from sweden, this is the only option to try to help my wife to get rid off this poison....but we did not know how cruel it could be....in the meantime finding BB forum and all stories of people suffering withdrawal...horrific.

Anyway, could you tell me how long you were taking quentapine? Was it helping at once or needed a time to help a bit? 

Thank you

 

[[ap...]]

On 06/03/2024 at 20:55, [[M...] said:

Hello to All,

I'm constantly searching all stories and really can't find someone with such a severe symptoms like my wife has (after 9 months with no benzo, after almost cold turkey, forced "tapering", without stabilization, in 6 weeks only, by doctor). And these are getiing stronger (or maybe it is just her impression due to weakness, exhaustion...?), anyway it becomes unbearable to my wife anymore and driving her to thoughts about any end to this.

Whole store of my wife is here: 

Symptoms below, starting with the worst:

- suffocation, hardly breathing, feeling like drown, chest squeezing, actually all body, muscles is squeezing, unable to talk, crying, yelling, horrific case ( especially in the mornings, can last 2-6 hours)

- extremely strong belly pain

- strong internal trembling , feeling like some insects eating body from inside, almost whole day long - like internal akathisia. Horrific feeling like has to take the skin off...

- head - brain burning and itching

- skin burning and itching

- insomnia ( only 0- 4 hrs sleep) 

- akathisia (external) - walking 1 -2 hrs daily

and many minor symptoms which she could stand if she hasn't been so exhausted. 

These severe symptoms are every single day, already 9 months long with no benzo plus 6 weeks tapering. In fact it is worse and worse.

What I find, people have such a symptoms after C/T but it usually either settle down after 2-3 months or people reinstate. 

If we knew it was that bad like this we would have reinstate benzo, but now after 9 months this would be extremely dangerous game I believe.

Or maybe someone went through such a horrific withdrawal and could give some hope...please.

Thanks to all...

Look, listen to me, this ends, none of this is permanent. If you reinstate you will just end up having to it all over again.  We are all going through this horrific ordeal. I'm 20 months off. My taper took 3 years and 8 months and yes horrific. Please try not to reinstate

 

[[Mi...]]

Hi appleeater, yes you are most probably right. You tapered in over 3 years, Alice in 6 weeks....Anyway we are still very far from reinstating this poison. But sometimes it comes to our mind, situation is so hard, devastating...not much we can do now. We continue to hope for better to come. Thank you.

[[or...]]

Hi again @[Mi...] & Alice,

Have you got a copy "online" copy, of PDF formatted Ashton Manual?  I was just reading what things are mentioned in it that cover from foods, drink, and other medications that might help in withdrawals.

I'll put a link here to the PDF file:  https://www.benzoinfo.com/wp-content/uploads/2022/07/Ashton-Manual.pdf

If you want to take a look at page 73, EXTRA MEDICATION DURING BENZODIAZEPINE WITHDRAWAL.

It does give the pros and cons.

Then page 77.  Same with this page, it gives pros and cons.

Look through as much of the menu as you can, there is a topic on so, very many different places a person might be at with withdrawing.  There might be something in there that will help your wife, and yourself get through this, oregonlady

PS I know this is a lot but maybe at some time you can just take baby-steps reading, this is my fave article that helped me understand "What is Happening in Your Brain" by Parker (her story is intense but so wonderful she was able to share it with us)

 

[[Mi...]]

Thank you Oregonlady, we've read Ashton manual, what a pity that it was too late. We went through Colin's explanation about brain but as you mentioned before you have never heard about such extremely severe symptoms...yes this is horrific and I really do not know why it is so bad. And it is not like waves...better and worse, every day looks very similar, very bad and actually slowly getting worse.

Still considering reinstatement but this is so much anxiety about it...after 9 months...

Something must be done...

Thank you.

[[Ma...]]

@[Mi...] Please contact cohealme.com and ask if Geraldine Burns is still with them and available for consultation. She testified to the legislature in Massachusetts changing their de-prescribing guidelines statewide after her own brutal withdrawal.

You can also look at them on Instagram.

You can message them :

sarah@cohealme.com

 I am confident you will receive some more information that will be helpful.

Also Google Geraldine Burns, read her stories, and watch her blogs/videos will provide you with an enormous amount of information. You might even see similar stories of your wife’s.

Edited March 14 by [Ma...]

[[ns...]]

Hi Michaelz, I was forced tapered in 8 weeks. What benzo was you're wife taking?

What dose?

How many x per day?

I was taking Lorazepam, I reinstated and it has bee a disaster. Now I'm forced to taper the drug that's made me sick.

If she does decide to reinstate, I would consider a different benzo like valium if it were me.

It's been almost a yr, I was off for over a yr and going back to the same drug was the wrong choice. 

She could do a slow taper on valuim if she has a doctor or psychiatrist to monitor her progress. 

Im not advocating reinstatement, an er doc gave me a valium 5mg and my symptoms were gone in minutes!

I wish I'd had tried valium before this taper. Once I was back on lorazapam, I used valium at the beginning of my taper and it was miserable. 

So, just a little snippet of what I experienced and for your information if she decides to reinstate. 

I have most of the miserable symptoms as yours wife and I am truly sorry she is suffering 😢. 

It is cruel to go thru it and at times I have to just cry out to God for just a break!

You are such a great husband for being there for your wife, I am blessed to have a husband who takes care of everything as you do. Hrs exhausted but he he keeps going. He keeps me going and for this I am so grateful every day!

I pray for strength for you both, your in for a bit of a journey.  I've visited the er several times for reassurance, it helps trust me. Also, be sure to get her sodium checked ok.

Blessings to u both 

Take care

Ns

 

[[ns...]]

Just now, [[n...] said:

Hi Michaelz, I was forced tapered in 8 weeks. What benzo was you're wife taking?

What dose?

How many x per day?

I was taking Lorazepam, I reinstated and it has bee a disaster. Now I'm forced to taper the drug that's made me sick.

If she does decide to reinstate, I would consider a different benzo like valium if it were me.

It's been almost a yr, I was off for over a yr and going back to the same drug was the wrong choice. 

She could do a slow taper on valuim if she has a doctor or psychiatrist to monitor her progress. 

Im not advocating reinstatement, an er doc gave me a valium 5mg and my symptoms were gone in minutes!

I wish I'd had tried valium before this taper. Once I was back on lorazapam, I used valium at the beginning of my taper and it was miserable. 

So, just a little snippet of what I experienced and for your information if she decides to reinstate. 

I have most of the miserable symptoms as yours wife and I am truly sorry she is suffering 😢. 

It is cruel to go thru it and at times I have to just cry out to God for just a break!

You are such a great husband for being there for your wife, I am blessed to have a husband who takes care of everything as you do. Hrs exhausted but he he keeps going. He keeps me going and for this I am so grateful every day!

I pray for strength for you both, your in for a bit of a journey.  I've visited the er several times for reassurance, it helps trust me. Also, be sure to get her sodium checked ok.

Blessings to u both 

Take care

Ns

Ps. Michaelz, the symptoms do get easier with time. It's difficult but I've learned to breathe thru it, tel myself I'm safe but only uncomfortable. But there are times when the symptoms are intolerable and a hot bath with Epson salts does give a bit of comfort. 

The more I focus on my symptoms, the worse they get. If that makes sense. I'm not able to tolerate vit, supplements etc, certain foods, or any kind of sugar or stimulants.

Just something to consider. 

Take care 

Ns

[[ns...]]

22 minutes ago, [[n...] said:

Ps. Michaelz, the symptoms do get easier with time. It's difficult but I've learned to breathe thru it, tel myself I'm safe but only uncomfortable. But there are times when the symptoms are intolerable and a hot bath with Epson salts does give a bit of comfort. 

The more I focus on my symptoms, the worse they get. If that makes sense. I'm not able to tolerate vit, supplements etc, certain foods, or any kind of sugar or stimulants.

Just something to consider. 

Take care 

Ns

Also, has she had her thyroid level checked?

 

[[So...]]

I don't think your wife has the worst symptoms I've ever seen if that beings you any comfort, painful and horrific, yes, but I'd hardly say it sounds like the worst case scenario.  I am sorry she is suffering so badly. 

 

I would really hesitate about reinstatement, I was having life altering horrific symptoms at 2.5months off and reinstated to have no relief and have to get off again.  It doesn't always work out like that, but reinstating is such a big risk, you'd almost be better off trying gabapentin or even an opiate if she is that desperate. 

 

I wouldn't try seroquel (quetiapine) in benzo withdrawal you have a high affinity for extrapyramidal side effects (sounds like she already has some akathisia) and those are significantly increased even more with Seroquel.  

 

Something that really helped me was just getting out of my symptoms a bit, starting very small, and doing a hobby like crochet.  It may be as you said that her symptoms arent really getting worse, but rather the length of time she's had to endure them is wearing on her and it's hard to find relief when all you do is lay in bed all day and think about them.  That may sound harsh and there is definitely a time and a place for doing that, but when people don't try to distract at all after acute is when I typically see people becoming stagnated. 

 

It is so so so hard and like I said, it could be something incredibly simple like crocheting or doing a small puzzle, and she won't want to do it at first but with enough repetition she may just find an outlet to help with neuroplasticity and getting out of the pain and/or fight or flight cycle. 

 

It is the basic principle of DNRS if you want to look into that.  Again, this wouldn't fix her symptoms but may help her have a better quality of life and pass time a little easier until she gets there. 

 

Best wishes!

Edited March 14 by [So...]

[[Mi...]]

Thank you All for support. We try things like all other people (even winter hat has still lying and awaiting to be finished with crochet, but as symptoms has worsened it still can't be finished).

Anyway we start on Monday with blood test, need to be refreshed, not yet done this year. We'll see how it goes.

Best wishes and good health to All of you. Thank you.