(*NOTE: Not benzo-related) STILL THE SAME! THERE IS NO HOPE

[[Th...]]

True, but there are so few cases of fatal insomnia or sporadic fatal insomnia.  The first is genetic.  If you are not in a genetic line that passes that gene on, you cannot get it.  The 2nd type "Sporadic" Fatal Insomnia or SFI has only 26 documented cases. 

 

You have a better chance of getting struck by lightning in your basement on a sunny day than getting SFI

[[Rx...]]

I wondered if anyone literally could die from insomnia.  According to this article, this horrible condition can be diagnosed by sleep study results and PET scan results.

 

https://rarediseases.info.nih.gov/diseases/6429/fatal-familial-insomnia

 

P.S.  I also found this article.  https://consults.blogs.nytimes.com/2010/06/24/can-you-die-of-insomnia/

[Guest [Sa...]]

You have to have someone in your family (usually mother or father) who had this disease to inherit the gene mutation- it’s not just random

[[Th...]]

I thought I had SFI too.  It was just my overactive Benzo altered mind.

 

No need to put people through needless fear of something I would bet the world on they don't have.

 

Again the odds are so remote, you would have a better chance of being killed by an asteroid that made it through the earth's atmosphere than getting SFI. 

 

Let's not put more fuel on the withdrawal fire.  People have enough to deal with already.

 

My advice would be to stop GOOGLING sleeping, withdrawal or other related diseases or illnesses.  It helps no one with anything.  Unless you want to increase your anxiety levels?

[[Rx...]]

I wondered if anyone literally could die from insomnia.  According to this article, this horrible condition can be diagnosed by sleep study results and PET scan results.

 

https://rarediseases.info.nih.gov/diseases/6429/fatal-familial-insomnia

 

P.S.  I also found this article.  https://consults.blogs.nytimes.com/2010/06/24/can-you-die-of-insomnia/

 

From first article link: 

 

"In most cases, a  person with fatal familial insomnia (FFI) has inherited the genetic change from a parent with FFI. In order to have FFI, a person only needs one copy of their PRNP gene to carry the specific genetic change (mutation) that causes FFI.  In other words, a person only needs to inherit the genetic change from one parent. In genetic terms, this is called autosomal dominant inheritance.[1]  In rare cases, FFI may result from a new (de novo) change in the PRNP gene, however it is not known how often a new mutation is the cause of FFI. New mutations can happen during the making of the egg or the sperm.[1][12]"   

 

I think if someone is truly concerned they are dying from insomnia, it is helpful to know that medicine can rule out such a worry.  I found both articles very interesting.

[Guest [Le...]]

If folks want to get launched on the extremely rare versions of Fatal Insomnia, then kindly bring it up in Off Topic.

 

It has nothing whatsoever to do with the temporary insomnia caused by benzo use and withdrawal.

 

Thank you.

 

I wondered if anyone literally could die from insomnia.  According to this article, this horrible condition can be diagnosed by sleep study results and PET scan results.

 

https://rarediseases.info.nih.gov/diseases/6429/fatal-familial-insomnia

 

P.S.  I also found this article.  https://consults.blogs.nytimes.com/2010/06/24/can-you-die-of-insomnia/

 

From first article link: 

 

"In most cases, a  person with fatal familial insomnia (FFI) has inherited the genetic change from a parent with FFI. In order to have FFI, a person only needs one copy of their PRNP gene to carry the specific genetic change (mutation) that causes FFI.  In other words, a person only needs to inherit the genetic change from one parent. In genetic terms, this is called autosomal dominant inheritance.[1]  In rare cases, FFI may result from a new (de novo) change in the PRNP gene, however it is not known how often a new mutation is the cause of FFI. New mutations can happen during the making of the egg or the sperm.[1][12]"   

 

I think if someone is truly concerned they are dying from insomnia, it is helpful to know that medicine can rule out such a worry.  I found both articles very interesting.

[[br...]]

 

ThEwAy . Again I am in awe of your calm , sensible and caring approach to the difficult topic of insomnia. ( and I'm glad that you are back )

 

Hugs from rabbitland 

[[Kl...]]

Hippocrates said thousands of years ago "let food be medicine and medicine be food".  Please research your diet, nutrition, whatever may peak your interest.  I have been ill for years and food has been my disease and food has been my cure.  Food caused a doctor to put me on a benzo and now, with a great diet, I am recovering.  Benzo withdrawal is my last hurdle.

Please stay positive and research.  Maybe if you can, see a good Naturopathic Doctor (licensed of course).

Hang in there and remember "if nothing changes, nothing changes".

God Bless

[[By...]]

only other thing I can think I have is CFS: Chronic Fatigue Syndrome, Supposidly I sleep but feel horrible anyways all the time some days much worse then others.....

 

And if I have that sadly there is no cure, but what else is new for me

 

I have CFS (or fibromyalgia, some claim they're the some, some dont?), its not the end of he world, but it does suck majorly

[[By...]]

Mark, you sure are taking a long time to die. Kind of like when I was a kid playing cops and robbers and pretended to get shot. I acted pretty melodramatic myself.

 

Thats a really awful comment aloha 

[[al...]]

Mark, you sure are taking a long time to die. Kind of like when I was a kid playing cops and robbers and pretended to get shot. I acted pretty melodramatic myself.

 

Thats a really awful comment aloha 

 

I understand why you think that, but you can't judge a long story that you stepped into the middle of without having read it from the beginning.

[[MT...]]

Mark,

 

I know you're suffering. We all hear you and have had some similar feelings. Maybe you do have CFS. Maybe it's just a more prolonged form of wd. (I'm not ruling out wd related effects until after 7-10 years). But even if you do have CFS, life goes on. It's amazing what people learn to adjust to. I haven't felt rested after sleeping since the late 90s. I've learned to roll with it. When I moved to Montana many years ago at first it was a tremendous shock. During the winter I thought I would never be able to adjust to how freaking cold it was. I would panic about the cold, worry about me or the kids getting frostbite or the car dying on one of those isolated highways. The locals taught me things like to get out every day in the cold, exercise, have emergency supplies in your car and how to dress appropriately. The cold didn't change but *I* changed. I stopped freaking out about it and rolled with it. I did what I needed to do and went on with my life. I came to love it there and still miss it now after 20 some years.

 

This is the same with insomnia, fatigue, pain, chronic athlete's foot, whatever. You can learn from the "locals" and adapt (like a good Borg on Star Trek). Most of the battle is avoiding freaking out about the symptom(s). They're just symptoms. I have CFS and still manage to work part-time, exercise, travel and have a social life. It may look different than a normie's life but all in all, it's not too bad. You get to choose: Are you going to choose melodrama, despair and struggle, or are you going to choose to learn, adapt and grow? It's totally up to you. No one can make that happen for you.

 

MT

[[Th...]]

Mark,

 

I totally agree with MT.  You have the power and the ability to respond to your current situation in any way you choose to.  You can be negative and play the "I feel sorry for myself card," or you can look WD or insomnia or whatever you are trying to overcome in the "eye" and choose to improvise and adapt and live the best possible life you can given the crummy circumstances.

 

I look at veterans and others that lost limbs or are wheelchair bound and they rise up and meet their disability head on and live life to the fullest.  They are an inspiration to me and so are many on this forum.  Everyone is fighting their own battles daily.  Please don't be a victim.  Be an a person that overcomes.  Be positive.  Be thankful.  Things could always be worse.

 

 

[[Go...]]

Hear, hear!

[[ea...]]

Mark,

 

I totally agree with MT.  You have the power and the ability to respond to your current situation in any way you choose to.  You can be negative and play the "I feel sorry for myself card," or you can look WD or insomnia or whatever you are trying to overcome in the "eye" and choose to improvise and adapt and live the best possible life you can given the crummy circumstances.

 

I look at veterans and others that lost limbs or are wheelchair bound and they rise up and meet their disability head on and live life to the fullest.  They are an inspiration to me and so are many on this forum.  Everyone is fighting their own battles daily.  Please don't be a victim.  Be an a person that overcomes.  Be positive.  Be thankful.  Things could always be worse.

 

 

This is excellent advice. Thank you for writing this. Many people do fall into the "feel sorry for me" game while getting off benzos. It DOES felt awful, no doubt about it. but if you just lie in bed feeling miserable, you may delay your healing. Think of withdrawal as a sort of temporary illness, like a cold virus. You do need to rest, but you also have to eat and drink normally to take care of yourself. And you DO have to get up out of bed and take care of things in your life. NOT doing so will only hurt you down the road. Over the years I have spent here on BB, I have noticed that people who fall into the self pity, "isn't it terrible" mode seem to heal slower. People who remain positive and hopeful no matter HOW bad they feel seem to do much better.

Benzo withdrawal is NOT easy for may people. But it is how we handle WD that seems to matter.

east

My icons aren't working but a big thumbsup to theway2

[[Ca...]]

Just that it can get dangerous judging anothers experience by ones own experience, or standards...  It becomes an assumption...

In some cases, Cant get out of bed might actually mean -Cant get out of bed..!!

 

I just mean this in a general way, -not case specific...

 

 

[[Ra...]]

Hippocrates said thousands of years ago "let food be medicine and medicine be food".  Please research your diet, nutrition, whatever may peak your interest.  I have been ill for years and food has been my disease and food has been my cure.  Food caused a doctor to put me on a benzo and now, with a great diet, I am recovering.  Benzo withdrawal is my last hurdle.

Please stay positive and research.  Maybe if you can, see a good Naturopathic Doctor (licensed of course).

Hang in there and remember "if nothing changes, nothing changes".

God Bless

 

For those of us that cannot afford a naturopath like me... is there a link or book about what your diet consists of? I'm extremely interested as I know that diet plays a HUGE role in health, next to adequate water intake and exercise.  We cannot expect to feel good, look good or function well if we don't take care of ourselves. Please share what you eat??? 

[[Th...]]

I am doing a Keto diet now.  You can Google it.  I also did a Paleo and Mediterranean too.

[[Th...]]

From Baylissa Frederick:

 

“There is a quote by Dave Brown that says most people give up when the odds seem insurmountable and the true heroes in this world are those who don’t. I genuinely believe that anyone who is going through or has been through withdrawal is a true hero/heroine, and I want to remind you of this today.

 

“In withdrawal, you spend so much time managing symptoms and finding ways of coping, it is easy to overlook the immense strength, resilience and courage you happen to find each day. It’s difficult for someone not experiencing withdrawal to appreciate just how much guts and gumption it takes to get through it.

 

“But you know what it feels like to wake up in pain, every day, and nothing seems to be changing. You know what it feels like to hold on for dear life, while the symptoms rage. You know what it feels like to feel fear in the depths of your gut and to wonder if you will ever heal. You know what getting through withdrawal entails and yet you wake up every morning and you keep going. It takes someone truly heroic to do this and not give up. YOU are that person.

 

“If no one acknowledges your strength and courage, that’s okay. But you must do so. You are the only one who fully knows your daily trials and what it takes to face and overcome them. May the strength that lies within you, which is more powerful than the worst aspect of your withdrawal, that has taken you this far, continue to propel your valiance. To be on this journey means you are strong, indestructible, amazing and deserving of utmost respect. Hold your head up high.”

 

Edit: Clarified unattributed quotation

[[Th...]]

From Baylissa Frederick:

 

“I often think of friends who have long recovered as well as those who healed more recently. At some point, every one of them have said the same things I hear some of you say now: “I don’t think I can do this for much longer.” “What if this isn’t withdrawal?” ” I don’t think I can take any more.” “I think I will be the person who doesn’t heal.” “Why am I getting worse rather than better?” “Will I make it to the end of my taper?” “Maybe this isn’t protracted withdrawal; maybe something else is wrong.”

 

“Some had the worst withdrawal experiences and would often lose hope. Many were cold-turkeyed multiple times, given ECT, reinstated and at times more than once, up-dosed, some felt stuck waiting to stabilize, a lot of them were poly-drugged – you name it – they have experienced it. I had to reassure… reassure… reassure.  There were quite a few who were suicidal or had strong ideation regularly. Well, I can tell you that they are extremely happy they didn’t act on it. It’s true that no one ever comes back to say, “I’m really upset that you encouraged me to keep going and not give up or give in.” Instead, they are thankful they waited it out. There is so much good on the other side, the response is always that it was worth it.

 

“I know that with so much conflicting information and so many people who are waiting longer than anticipated claiming to be exceptions to the “happy ending” stories, it may be difficult for you to believe you will heal. But even those people who post comments about never healing will heal too. You will see. They will see. It’s only a matter of time. Yes, many people heal within the first 18 months, but there are others for whom it will take more time. Trust the process. Your nervous system is innately intelligent, resilient and self-healing. It knows exactly what to do in order for you to heal.

 

“So, remind yourself of this, today. Take a deep breath… and for a moment, tell yourself that the day is coming when you, too, will recover from your withdrawal and will be able to move on, do all the things you can’t now, and live your best life. Even if you are still tapering, yet to taper, feeling stuck, or in the acute, post-acute or protracted stage with seemingly no signs of improvement yet, remember that the natural outcome of withdrawal is recovery. If you consider those before you who experienced what you are now,  you can expect to get better and one day share your success story too. That time is coming!

 

“Keep holding on. Trust that when the timing is right for you, this withdrawal chapter will come to an end and you will be well again.”

 

Edit: Clarified unattributed quotation

[[Th...]]

The above 2 posts were from baylissa.com/blog  There are not my work.  I don't have edit or delete rights.

[Guest [Le...]]

The above 2 posts were from baylissa.com/blog  There are not my work.  I don't have edit or delete rights.

 

I fixed them for you.

 

Kindly review these many quotations you share from Baylissa Frederick (and others) and add the correct attributions (up front), including quotation marks, before you post.

 

It is frustrating for members to slog through walls of text from other sources, only to find that the words are not your own – this has happened repeatedly with your posts and it takes time for the team to go back and credit them.

 

Thank you.

[[Th...]]

NO, it has not happened repeatedly! 

[[Th...]]

And if I had edit rights, I could have easily fixed the posts and then you wouldn't have to slog through them..thanks for your help!

[Guest [Le...]]

The above 2 posts were from baylissa.com/blog  There are not my work.  I don't have edit or delete rights.

 

I fixed them for you.

 

Kindly review these many quotations you share from Baylissa Frederick (and others) and add the correct attributions (up front), including quotation marks, before you post.

 

It is frustrating for members to slog through walls of text from other sources, only to find that the words are not your own – this has happened repeatedly with your posts and it takes time for the team to go back and credit them.

 

Thank you.

 

No, it has not happened repeatedly!

 

I beg to differ, you have been spamming the forum with walls of often-unattributed text from Baylissa Frederick all over the forum, for some reason. I know, because I keep going in and annotating the titles, and adding quotation marks and clear attribution (which is time-wasting and frankly, boring).

 

Please remember that this is a peer support forum. You continue to post this stuff that misleads members into wading through Baylissa’s long essays as though they’re your own words, which has irritated more than a few of them, and they keep explaining this to you – others just report it.

 

You have many useful personal experiences to share, which are always greatly appreciated – but please DO NOT continue to spam the forum in this manner, or your posts will be pre-moderated.

 

DO NOT continue to litigate this on the open forum. Register your complaints at the Helpdesk.