First year passed and worse than before...

[[Mi...]]

Hello everyone,

I need to update our history. Below link with my wife's battle without end...so far.

So, 1 year passed and situation is still getting worse, although it was hard to believe 2-3 months ago that it could be worse again. Alice is still looking for someone like her. But ,while reading histories of long haulers, she has discovered that over 90% of people after CT or too quick taper do not really heal. They are suffering for years and usually becoming more and more sick. If symptoms were not very severe at the beginning they could stand it believing in healing but when it is very bad from the very beginning , like Alice has, it might be very difficult, if the situation does not improve...at least a little.

So in our opinion saying that "everyone heals" in fact depends on the way you coming off the benzo. Maybe it is easier to say so when your way to healing was not so long and difficult or you are still tapering the benzo. In fact some people from "success stories" are having again severe symptoms after taking some medicines or having stress situations... We are not pesimistic people but Alice is not having even windows. Was always hoping that will get better, when 2-3 months passed, after 5-6 months...but now 1 year is over and is worse then ever....with no windows....Yes, I know Long Haulers starts from 18 months but how to stand it?....

And with unbearable symptoms she has, it is so hard to stay optymistic, it is hard to stay at all:

akhatisia, feeling like you are going to explode and you have to move on but you can sleep only 1-2 h /24 h so really you are exhausted,

internal trembling, trembling voice, parkinson like symptoms not allowing to do simple things or going out

severe pain in belly, chest, muscles, stiffened muscles

burning skin and guts

burning brain, dizziness

breathing difficulties with chest pain not allowing to talk

DR, DP, brain fog, not clear vision, thinking difficulties, not able to talk to friends, family

hipersensitive in all aspects

not being able to watch tv, listen to the music, can't rest without constant movement, can't seat due to pain - has to have support to whole back

devastating insomnia

loosing hair and weight (15 kg)

All symptoms since 1 year. I stopped believeing that one day it will suddenly cease but still believe that it will finally improve and give some "light" for recovery. 

I know some people have already asked that question but again, is really everyone going to heal?...

Wishing you all health.

Leszek

 

 

[[fa...]]

30 minutes ago, [[M...] said:

Hello everyone,

I need to update our history. Below link with my wife's battle without end...so far.

So, 1 year passed and situation is still getting worse, although it was hard to believe 2-3 months ago that it could be worse again. Alice is still looking for someone like her. But ,while reading histories of long haulers, she has discovered that over 90% of people after CT or too quick taper do not really heal. They are suffering for years and usually becoming more and more sick. If symptoms were not very severe at the beginning they could stand it believing in healing but when it is very bad from the very beginning , like Alice has, it might be very difficult, if the situation does not improve...at least a little.

So in our opinion saying that "everyone heals" in fact depends on the way you coming off the benzo. Maybe it is easier to say so when your way to healing was not so long and difficult or you are still tapering the benzo. In fact some people from "success stories" are having again severe symptoms after taking some medicines or having stress situations... We are not pesimistic people but Alice is not having even windows. Was always hoping that will get better, when 2-3 months passed, after 5-6 months...but now 1 year is over and is worse then ever....with no windows....Yes, I know Long Haulers starts from 18 months but how to stand it?....

And with unbearable symptoms she has, it is so hard to stay optymistic, it is hard to stay at all:

akhatisia, feeling like you are going to explode and you have to move on but you can sleep only 1-2 h /24 h so really you are exhausted,

internal trembling, trembling voice, parkinson like symptoms not allowing to do simple things or going out

severe pain in belly, chest, muscles, stiffened muscles

burning skin and guts

burning brain, dizziness

breathing difficulties with chest pain not allowing to talk

DR, DP, brain fog, not clear vision, thinking difficulties, not able to talk to friends, family

hipersensitive in all aspects

not being able to watch tv, listen to the music, can't rest without constant movement, can't seat due to pain - has to have support to whole back

devastating insomnia

loosing hair and weight (15 kg)

All symptoms since 1 year. I stopped believeing that one day it will suddenly cease but still believe that it will finally improve and give some "light" for recovery. 

I know some people have already asked that question but again, is really everyone going to heal?...

Wishing you all health.

Leszek

So sorry. Has she tried any other meds to help WD or is she on other meds?

[[Ja...]]

Really sorry to hear about your wife’s situation buddy,.it certainly is a travesty having to go through as mutch suffering that’s comes from medication discontinuation

[[fa...]]

Some people do day they don't get windows until the year mark

[[Cr...]]

3 hours ago, [[M...] said:

But ,while reading histories of long haulers, she has discovered that over 90% of people after CT or too quick taper do not really heal.

Is 90% an actual accurate tally for the people on Long Haulers? I suspect it is more of an 'impression' the wife gets from the active members. There are some important factors she is overlooking.

Forums like this are mostly filled with people that are suffering the most from benzo withdrawal relative to the general population of benzo users. Statistically, we are all outliers on the bell curve and most people coming off benzos do not suffer as badly as we do and for a long duration.

Now when you take into account that almost everyone signing up for this site is part of the rare 'worst of the worst' for benzo withdrawal, a huge portion of them go on to write success stories. Others just quickly or casually disappear after a few weeks, months, or even more than a year of posting and it can be presumed most of them likely went on to heal, lost the need for this site and never went on to write a success story.

So now we get to the minority of the minority of benzo withdrawal sufferers, the people in Long Haulers that take beyond 18 months. While that group has 466 members, many are a part of that group because after 18 months they are not 100% healed. Many are just dealing with one or two persistent symptoms that refuse to go away like tinnitus or occasional brain fog and have functional lives. The amount suffering past 18 months with debilitating symptoms similar to the beginning of withdrawal is a small percent of the already small percent of benzo users that need to use a forum like this. We all want them to recover and I am sure they don't want other people in withdrawal to assume their duration and intensity of suffering is the norm.

Also, unless members' accounts are deleted or they are kicked out, the Long Haulers membership #s will only increase even when many of its members finally do recover 100%.

There are lots of success stories for rapid tapers and cold turkeys. I highly suggest you look for them in the Success Stories. The admin @[Pa...] cold turkeyed off around 6 mg of Klonopin and healed around 14 months.

For some the path to healing is gradual. For others it is bumpy. For an unfortnate, but not insignificant, few withdrawal can feel persitently unrelenting for a quite awhile and then changes for the better practically overnight.

When suffering from withdrawal it is easy to presume the worse when you feel so unwell. If your wife is truly looking at the most likely scenario for her situation, the statistics show she is more likely to fully recover than end up in a protracted withdrawal. Should she reach 18 months and not be recovered, she may at least experience some improvements. The possibility of her going into a long protracted withdrawal is not zero, and neither is winning the lottery.

I truly hope she recovers soon. She will have the support of this forum for however long she needs us.

Edited June 8 by [Cr...]

[[jo...]]

I agree with crono, the vast majority of people fully heal with hugely varying timframes dependent on multiple factors. Looking at the long haulers group can give a false impression, as they are a really small percentage of people suffering past 18 months. They are also in the midst of suffering as opposed to the long haulers who have long gone because they are better. 

It is a tough situation you are all in but there are so many people who report acute like symptoms that improve or go away altogether very quickly. Sometimes over night. Stay strong, things will get better.

[[He...]]

Did she take some other supplements or drugs? What does she eat? How is her hormonal status? For example I am super sensitive to my own hormones and definitely I can guess when I am ovulating.

At last but not at least you are such a supportive partner. I know how difficult can it be.

[[So...]]

I inboxed you to share my story and let you both know you're not alone and there is a lot of hope.. your wife has a wonderful prognosis- it is just about making it to the finish line ❤️

[[Mi...]]

Hello everyone,

thanks a lot for so many replies. We do appreciate BB forum and what all of you are doing here to support suffering people.

To answer some questions. Alice only takes Propranolol (2 x 10 mg) to reduce internal shaking but it rather does not work well anymore (should not increase the dose due to rather low pulse, with quite high blood pressure), lemon balm and magnesium.

No other medicines, she was trying couple of months ago but can't tolerate what doctors prescribe.

Hormons are ok, she was making blood tests recently.

We know that so many people is suffering like Alice but what is the most scariest thing is that everybody is talking about "windows" but Alice does not have such a periods and this is what makes her thinking that she might not heal...and in fact everything is getting gradually worse. Situation would be not so bad if symptoms from the very beginning were not so extreme. 

Anyway thank you all for support. From time to time I will make an update, hopefully with better messages...