An experience like no other

[[An...]]

Pj, Thank you with all of my heart. I'm so scared this is something I will never be free of. It is a cruel torture. I got into this whole mess with ativan due to having insomnia (hormonal related) a few nights per month after having my baby. I had no idea the Pandora's box of problems including severe insomnia still at five months out from my last dose I would be inviting into my body by trying to "fix" my insomnia with a pill. It set me back something fierce and it's torture. On top of insomnia and all of my other randomly rotating symptoms (twenty-something), I am a mom who still gets woken up multiple times by my baby every night once I finally manage to fall asleep. And I still have to take care of my baby and be present for him every day through all of the symptoms. I thought what I had before was tough...I had no idea. The worst thing is that I only took the med for three months total and yet my body is acting as though I took it for years - I have always been extremely sensitive to medications of any kind. I am so mad at myself for trusting my doctor. But I know I can't focus on that. It does no good. I just have to keep trudging along. And truly the worst part is having to go through this while my little one is a baby. I hate that this is happening to me and to my little family. I feel like I am faking it so much of the time - my husband tells me "fake it until you make it." And I really do - I don't want to have any regrets so I never let my suffering show in any way with my baby. My husband and my mom are the only ones who know I'm still going through this. No one in my family really believed what was happening to me was due to a "safe" prescription drug and none of them would believe it's still causing withdrawal. I have lost contact with most of my siblings and am not on speaking terms with my dad and his wife. This whole thing has been a nightmare of epic proportions. It's so hard to hold onto hope that this will end since I feel like my sensitive body is so very different than so many others. But stories like yours keep me hanging on through this hell. I cannot thank you enough for taking the time to come back here to offer hope, kindness, and compassion. This place and my husband and mom are all I have for support going through this nightmare. I pray every day that one day I will look back on all of this as a distant memory and be glad to be free of it and so grateful to have made it through. Also I have not found even one health care professional who believes in withdrawal - they all say the same thing - "the medication is out of your body now so there is no way it can cause withdrawal." They are so wrong. Anyway, thank you so much again PJ 

[[...]]

Hi Angelprint,

 

I'm about to take a lunch break, but before I do, I wanted to get back to you.  Thank you for your kind words, you are very nice.

 

No one, except the people at BenzoBudddies will understand what withdrawals are like for you.  We cannot expect our family or friends to understand. Folks who are going through withdrawals have a hard enough time, themselves, trying to understanding what is happening to them.  Most doctors don't understand.  So, for people who never heard of a benzo to understand, no matter how much they love you, the whole withdrawal thing will not register with them.  People fear what they cannot see.  Benzo withdrawals, for the most part, are invisible.   

 

Sometime ago, a member asked me how I coped with not sleeping for almost thirty days.  I responded to them with the following post, perhaps it may help you. 

 

How did I cope with my not sleeping?  By not going to bed.  I knew I wouldn't sleep, so instead of tossing and turning all night long in my bed, I spent most nights in my recliner with the television on, the volume turned down real low.  I would watch old black and white movies that were showing on the TCM channel.  Colored movies would have been much too bright, and much too stimulating for my already over stimulated mind to handle.

 

As strange as it seems to say it now, at that time, all those great actors from the forties and fifties became my friends, not because I was delusional, but because they kept me company all night long, making me feel like I was not going through withdrawals all alone. 

 

Watching those old movies helped to ease my anxiety over not sleeping.  When morning came, I would just say to myself:  "I didn't sleep last night, maybe tonight I will."

 

Angelprint, on those nights when sleep eludes you, and if you have access to some of those wonderful old black and white movies, you can take your little baby, and you two can cuddle together in a comfortable chair.   

Bonding with your child who is sleeping next to you, the muted voices on the TV, and the stillness of the night, may comfort you enough so that you could possibly fall asleep. 

 

The worst thing you can do is to go to bed, and just lie there, tossing and turning.  Believe me, I did that a few times, and as you probably already know through experience; it's torture.

 

Your sleep will come back, not magically all at once, but it will come back in stages.  Your brain is working overtime to repair the part that regulates sleep.  Try not to obsess about not sleeping, it just makes it worse.  It's got to be so hard for you, raising that precious little baby on very little sleep.  I [...] your sleep returns real soon, I really do.

 

One night when I was sitting in my chair, and for the first time in many weeks, I started yawning - I knew that I was about to witness a miracle, and I did.  I slept that night, not perfectly, and not all that long, but I slept.

 

Until your sleep cycle straightens out, you can expect sporadic sleep.  Some nights only an hour or two, some nights three or four, maybe five, other nights, nothing.  There is no rhyme or reason to it.  It's maddening, I know, but eventually you will sleep like a newborn baby.

 

You will dream happy dreams again.  No more nightmares.  Your mind will be as free as dandelion seeds floating in the wind.

 

I cannot imagine what it must be like to go through withdrawals while tending to a little baby, especially when you are not sleeping. 

 

Take good care of yourself .

 

pj

[[pi...]]

pj,

 

You have such a special way of comforting and reassuring our members, thanks again for all you do to help!!! It's hard to see the light of day when getting pounded with symptom after symptom and it's up to those of us who have gotten to a place of wellness to let others know that it will happen for them as well.

 

Yeah, Skype is great!  My granddaughter, now 3, is really able to communicate with us.  Still, I miss her.  Mr. PG is retiring next month, and I think I will survive that....  .  We've talked a little about possibly moving to where our son lives, we'll have to see how things play out.  We love where we live but since it appears we'll only have this one grandchild, we'd love to be able to share her milestones and be a part of her life.

 

Life is funny, we'll see what's down that road. 

 

PG

[[An...]]

PJ, thank you so much again, with my heart. You completely understand why benzo withdrawal isn't understandable to family and friends. You are right it is invisible - I've had that thought many times. Thank you so much for your kind advice and empathy. I know you took a benzo for sleep right? So you truly understand. I hope you're right and my sleep will come back. This has been such a trial. Thank you for reassuring me and for caring and for responding on your break 

[[...]]

Hi PJ

 

Its always great to read your posts, so inspiring, so supportive and always thinking of our members. Like me you are so very passionate in helping members to get through this awful journey.  We know there's often little or no support out there for benzo folk.

 

You are right it matters not how long or what dosage one takes.  Everyone's withdrawal is unique.  I met friends similar dose and length of time as me, recovery time was completely different.  Its unfortunate, sometimes members taking small dose short time can sometimes take as long as members who have taken it a few years.

 

Withdrawal is such a difficult journey, there is no quick fix, its tough but its temporary, we do recover eventually.

 

Its a privilege to know you,( virtually) my friend, thank you for continuing to take the time to post support

 

Margo :smitten:

 

 

Hi there, Margo

 

It's so nice to hear from you again. 

 

Way back, when you first became a Moderator, and you were responding to the new members who had just registered at BenzoBuddies, I instantly knew what a special person you were.  You were so kind, and understanding, and you had so much empathy for those folks. 

 

Now you are an Administrator, and nothing has changed.  You are, and you will always be someone very special to me, and to everyone who has ever corresponded with you.  You love to help people, and they in return, love you.

 

I thank you for always treating me with so much kindness.

Your virtual 'keyboard' friend.  Peace and happiness to you forever.

 

pj

 

 

 

[[...]]

pj,

 

You have such a special way of comforting and reassuring our members, thanks again for all you do to help!!! It's hard to see the light of day when getting pounded with symptom after symptom and it's up to those of us who have gotten to a place of wellness to let others know that it will happen for them as well.

 

Yeah, Skype is great!  My granddaughter, now 3, is really able to communicate with us.  Still, I miss her.  Mr. PG is retiring next month, and I think I will survive that....  .  We've talked a little about possibly moving to where our son lives, we'll have to see how things play out.  We love where we live but since it appears we'll only have this one grandchild, we'd love to be able to share her milestones and be a part of her life.

 

Life is funny, we'll see what's down that road. 

 

PG

 

Hi pianogirl,

 

Ya, I know.  I'm just like somebody's old bathrobe; comforting and reassuring

 

Enjoy your granddaughter while she's still 3 years old.  Turn around and she'll be 13.

I hope all your plans work out great for you.

 

The best to you from cyberspace.  It's nice to have an invisible friend again.  I was 5 years old when I last had an invisible friend

 

pj

 

[[...]]

PJ, thank you so much again, with my heart. You completely understand why benzo withdrawal isn't understandable to family and friends. You are right it is invisible - I've had that thought many times. Thank you so much for your kind advice and empathy. I know you took a benzo for sleep right? So you truly understand. I hope you're right and my sleep will come back. This has been such a trial. Thank you for reassuring me and for caring and for responding on your break 

 

You're very welcome, Angelprint.  I'm glad that I was able to give you some reassurance that you will get through this. You WILL sleep again, and NO, you will not be permanently damaged from what that doggone Ativan did to you.  Ativan messed me up pretty good, but I think the Ambien was even worse. 

 

I'm sensitive to most medications, just like you are.  When I took Benadryl for the first time, I took the recommended dose, big mistake, for the next day and a half, I felt like a drugged Zombie.  I was desperate for sleep so I tried it again, at one quarter the recommended dose, and it worked fine for me the few times that I took it.  I don't like to take any medications, and I won't unless they are absolutely necessary for my health and well being.  All I currently take is vitamin D because it's hard to get enough just by the food that I eat.     

 

You have a supportive husband and that sweet baby; two wonderful reasons to stay strong, and I know you will, because you seem like that kind of a person.

 

I hope you can get some sleep tonight. 

 

pj

[[An...]]

Thank you so much PJ!! It's been such a hard week for me - I'm just treading these crazy withdrawal waters! I'm holding on and I can't wait for these moments to pass!! Thank you for saying I seem like the kind of person who will stay strong and for believing in me! I won't give up - I feel like this whole experience I've been like the Apollo space craft coming back through the atmosphere as they show it in the Apollo 13 film - invisible layers of me burning as I descend back to earth. The Apollo craft and it's passengers all made it so I will keep believing I will too even in the darkest moments - I just haven't made it far enough out of space yet  By the way I'm a big fan of black and white films - I love Jimmy Stewart, Cary Grant, and Abbott & Costello. Thanks again for believing in me and for your kindness  You know exactly how much and how badly I need it right now 

[[...]]

Hello Pj,

 

Were you so together during withdrawal? Did you cry?

 

I had been so positive and doing everything I could to keep myself healthy while my brain got better. Everything got worse 3-4 weeks ago.  I know it will get better, I know the physical will go away and I know the mental is not me but sometimes it overwhelms me so and I don't know what to do. I try to distract and do most of the time but it doesn't always work.

 

I work 4 hours 4 x week. I need to. I am not going to let my family lose everything because of this.

 

How did you keep yourself going? What did you do with yourself? The winter makes it so much harder. My husband had foot surgery last week and is stuck in the house.

 

Were you really bad and did you really get better?  You are so kind to all on here. I am sorry to be so pitiful.

 

[[Te...]]

Hi, 1729,

 

Your history looks just a little bit like mine, esp. when you stopped, and how long you've been going through w/ds. I am having a rough time, but the one thing that helps me the most is exercise. When someone first suggested that I try running, I told them that I didn't think it would be possible. But, eventually, one morning, I *forced* myself to get up, put on a cold-weather jogging suit, and go out, even though I felt awful.

 

I'm so glad I did! I discovered that it isn't a cure, but that, at the very least, while I'm out running, the symptoms are held at bay. Since then, I've gone jogging just about every day, no matter how cold it is. For the most part, I've only missed days after it's just snowed, or if it's currently raining.

 

Lately, I've been going for longer and longer distances/times. I don't really push myself -- I stop and walk whenever I want to. But just this morning, I went for almost three hours, and covered about 10 miles.

 

I think it has really helped make the symptoms lessen more quickly. Anyway, that's one thing that I do that helps me keep going. If you try it, I hope it works for you, too.

 

 

[[...]]

Hello Pj,

 

Were you so together during withdrawal? Did you cry?

 

I had been so positive and doing everything I could to keep myself healthy while my brain got better. Everything got worse 3-4 weeks ago.  I know it will get better, I know the physical will go away and I know the mental is not me but sometimes it overwhelms me so and I don't know what to do. I try to distract and do most of the time but it doesn't always work.

 

I work 4 hours 4 x week. I need to. I am not going to let my family lose everything because of this.

 

How did you keep yourself going? What did you do with yourself? The winter makes it so much harder. My husband had foot surgery last week and is stuck in the house.

 

Were you really bad and did you really get better?  You are so kind to all on here. I am sorry to be so pitiful.

 

 

Hello to you, 1729

 

Did I have it together?  Believe me, when I was in the worst of withdrawals, I did not have it all together. For the first three months I was pretty much like a Zombie, slow-walking my way through the day - that is, when I was able to walk without my legs feeling like they were on fire.

 

Did I cry?  I was raised in an environment where it was instilled in me that boys and men don't cry - how crazy is that?  But I realized that crying is a sign of strength and compassion, not a sign of weakness - so yes, there were days that were so overwhelming, that I did shed a few tears. 

 

I'm sorry that things got worse for you.  Things will get better again.  Benzo withdrawals are like a Duncan Yo- Yo, one day we are up and the next day we're down.  Eventually the string on that yo-yo breaks, and everything evens out in our life.

Benzos trick our mind like no other drug does.  We can be reassured fifty times a day that we are going to get better and completely heal.  Yet, we still doubt it, not because we want to doubt it, but, because the benzos won't let us believe otherwise. 

 

You will get better, and you're going to completely heal.  I'm not saying that just to make you feel good.  I'm saying it because it's true.

 

What did I do during withdrawals?  I tried to stay positive.  I kept a journal of my benzo experience.  I tried to live my life the way I did before withdrawals, but that's a tough thing to do, because of all the limitations withdrawals puts on us.  Going back to work was a challenge for a long time, but it helped me to not dwell on my symptoms.  When I couldn't sleep at night, which was an on going struggle, I would watch old black and white movies to help wile away the hours.

 

You asked if I was really bad, and did I really get better.  If you could have seen me when I was wearing a parka in the house because I was freezing cold or when I would stick my head in the refrigerator, trying to cool off, because my body sometimes felt like it was on fire or if you could have seen my red eyes with their twitching eyelids, 

 

and you could see me now - there would be no doubt in your mind that people do heal from benzo withdrawals.  Thousands of folks have healed.  I did, and so will you.

 

You are not being pitiful.  You are having withdrawals.  What is pitiful is that anyone has to go through benzo withdrawals.  Benzo withdrawals, as you know, are probably the most painful, and the most confusing thing you will ever have to deal with in your lifetime.

 

The time will come when the dark days of withdrawals will be behind you, and the bright days of the future will be ahead of you.  I hope you start to feel better real soon.

 

pj

[[An...]]

Ted, I have also found that walking or sometimes jogging is the only thing that helps me. I know you said running but wanted to say I'm similar in finding that getting outside and exercising helps! I just read your signature - isn't phenobarbital for seizures? I was a vet tech and I remember vets giving that for seizures. I wanted to add that I didn't have anything major after I finished my taper and then exactly one month out I had a panic attack and a mini version of what happened to me in cold turkey withdrawal. Since my husband and I thought I wouldn't experience withdrawal after my taper we had no idea what was going on and we went to the ER. Thankfully I haven't had another panic attack since that last one but that's when I feel like my withdrawal really kicked in - I started back in with about 29 symptoms (about 35 less symptoms than I had in cold turkey withdrawal). But it's weird how I seemed to be doing ok despite some withdrawal symptoms up until one month off exactly. Sort of similar to you. I wonder if that's how long it takes for the drug to completely leave our bodies?

[[...]]

Ted,

    I used to run. 10 miles was my max. My husband is a marathoner but not me. I do miss the warm flush I would get from running and feeling used up but now I am sticking to walking. I did 3 miles outside today. It was nice.I do feel better most of the time walking but this past bout of torture has made it tougher. I have had to slow down to keep the sweat and heat down. Never sweat before walking but everything makkes me sweat again now. It is not going to take my walking away from me.

 

Thanks for the suggestion onhow to feel better. It has been an adventure, not one I will ever repeat

 

Good luck, I hope we both are better soon 1729

[[...]]

PJ,

 

Thank you for answering all my questions. I had to smile about your hot and cold story as I laid in bed with my ice pack and my blanket nearby.

 

You help so many of us. Thank you for remembering us. Hopefully, one day we won't have to help anyone after we heal. Hopefully, this won't happen to too many more. Thank you for helping me. Kate 1729

[[Mo...]]

Congrats PJ!!!

[[...]]

Thank you

[[...]]

Hi PJ,

 

I am so pleased for you to have come through this, it must feel wonderful 

 

I have read your success story over and over as it gives me hope. I am 10 months off and really thought I would be better than this by now. Totally exhausted and awful muscle weakness and burning in my shoulders and head. This morning my mind was telling me there must be something else going on here as some days it feels so much worse than others. Can you relate to this and will it get better? I'm not sure if this contributes to the dizziness as all the tension spreads to the ears.

 

You are an angel for staying on here now you are better and helping others. Bless you 

 

Catherine

[[...]]

PJ,

 

Thank you for answering all my questions. I had to smile about your hot and cold story as I laid in bed with my ice pack and my blanket nearby.

 

You help so many of us. Thank you for remembering us. Hopefully, one day we won't have to help anyone after we heal. Hopefully, this won't happen to too many more. Thank you for helping me. Kate 1729

 

You're welcome, Kate.

 

I hear you, I always kept a blanket within arm's reach when I was going through the "now I'm freezing" ... and the "now I'm roasting" phase of my withdrawals. 

 

Hopefully, if and when more doctors begin to take benzo withdrawals seriously, it will be a giant leap forward towards reducing the amount of physical and mental suffering that folks have had to endure,

just because they were not made aware of the harmful, debilitating side-effects that are inherent in a drug that is so misunderstood, and so overly-prescribed.

 

The best to you.  Take care

 

pj

[[...]]

Hi PJ,

 

I am so pleased for you to have come through this, it must feel wonderful 

 

I have read your success story over and over as it gives me hope. I am 10 months off and really thought I would be better than this by now. Totally exhausted and awful muscle weakness and burning in my shoulders and head. This morning my mind was telling me there must be something else going on here as some days it feels so much worse than others. Can you relate to this and will it get better? I'm not sure if this contributes to the dizziness as all the tension spreads to the ears.

 

You are an angel for staying on here now you are better and helping others. Bless you 

 

Catherine

 

Hi Catherine

 

I can sure relate to you regarding the shoulder burning and muscle weakness.  The stiffness and the burning in my neck and right shoulder were the last symptoms to leave, stubbornly hanging on for close to fifteen months, until one day those two remaining symptoms just disappeared.  That is when I knew I had completely recovered. 

 

Benzos are notorious in convincing us that something else, other than withdrawals is happening to us, because those withdrawals can change in intensity or feel different - sometimes, hour by hour.  It's frustrating and it's disconcerting, especially when a symptom seems to be less painful, or may have left, only to reappear in a day or two, worse than it was before. 

 

Try not to worry about it, because your body keeps on healing itself every minute, every hour of every day.  It may be so miniscule that you aren't aware that you are healing, but you are, and you will continue to do so, until that momentous day comes when - HOORAY! - you are completely healed.

 

The dizziness you mentioned is a symptom that many folks experience.  When I had the dizziness thing going on - the way I walked, would had made the proverbial drunken sailor seem sober.

 

Thank you for your kind words. Responding to nice people like you is what keeps me from cutting the cord and drifting away from here.

 

Peace and happiness to you.

 

pj

[[An...]]

Hello dear PJ,

 

I am still so very grateful for your responses!!!

 

One thing I always want to ask those who have healed:

In the Ashton manual it mentions that a great stress can temporarily bring back withdrawal symptoms after one has healed. Is this true?

 

It's my dream and hope to have a second baby if I ever heal from this horrible torturous withdrawal. But I keep thinking that the physical and mental stress of pregnancy and birth and physical healing postpartum are huge stresses so I worry they would trigger withdrawal. I wouldn't want to have that happen.

 

I know I'm years away from considering getting pregnant again and who knows how long for healing from withdrawal? But I can't help thinking of this every day. It has always been my husband and my dream to have 2 children and we still dream of it.

 

I have already asked one member who has healed and she said she hasn't had symptoms come back from stress but has had them come back from taking medicine - even OTC simple things like Benadryl. I've always been dangerously sensitive to medications of any kind my whole life so I do worry about if I would need a medicine during pregnancy or delivery.

 

Please let me know your experience if you get a chance - with symptoms returning due to stress or medicine (even OTC).

 

Thank you so much!!

[[...]]

Hi Angelprint

 

I want you to stop worrying about the extremely rare possibility that some undue stress in your life could trigger a return of withdrawal symptoms.  When you have healed, my friend, you will stay healed.  For your peace of mind, you must remember that something that may have negatively impacted someone else, does not mean or portend that it will happen to you. 

 

I don't have any idea how common it would be for an extremely stressful event to trigger a return of withdrawal symptoms in a person who has healed.  Applying common sense, and a little logic, I would suspect that it would be extremely uncommon, if at all.  I have some pretty stressful days, and none of my symptoms have ever returned.

 

Like you are, I am extremely sensitive to drugs, too, but I have never had any withdrawal symptoms come back when, on those rare occasions that I took an OTC medication.  I always take much less than the recommended dosage.  Knock on wood, I do not need take any prescription drugs.  Your doctors must be aware of just how sensitive you are to medicines, so, I would hope they can make any needed adjustments or substitutions to any drugs that may be required for you to take during a pregnancy. 

 

Don't let all those 'WHAT IFS' that are swirling around in your pretty head get you down, and keep you from realizing your dream of having another baby.  You must remember that most of the things we worry about in our life will never happen. 

 

The stress, and anxiety that goes along with being pregnant, I would imagine, is a much different kind of a stress than any of the other stresses in a woman's life.  It's got to be a happy kind of stress.  Even if it were possible for stress to bring back withdrawal symptoms, the stress that goes with being pregnant, is not the kind of stress that could bring back withdrawal symptoms. 

 

So, please, don't you worry.  Don't let anything deter you from dreaming that wonderful dream that you and your husband have of some day, bringing a precious new life into the world.  When you hold that newborn baby, a miracle of all miracles, in your loving arms for the very first time, and feel it's gentle touch, touching you, all will be so right in your world.

 

You're going to stop being a worrywart? Promise.

 

pj

[[An...]]

Hahaha, yes pj, I will try so hard to stop being a worrywart!! Thank you so much for your response!! It is so hard not to be worried in withdrawal - I can't wait until I'm my normal self again, and completely healed!! Thank you so much for being so positive and so supportive of me and of all of us on BB!! I won't stop dreaming of that precious second baby 

[[...]]

You're very welcome, Angelprint. 

 

Hahaha! back at you.  You were laughing - that's great!  Laughter is the best medicine for a person in withdrawals.  Unlike benzos, laughter is addictive in a good way, and the only side-effects are that it puts a smile on your face and a song in your heart.

 

To quote George Bernard Shaw: "Life is a flame that is always burning itself out, but catches fire again every time a child is born."

 

Have a happy day.

 

pj 

[[pa...]]

Hello Sweet Friend PJ...

 

This "Cowgirl" is just stopping by to say hello to my dear friend.  I've been away for awhile, but stopping by to say howdy to my writing partner PJ.  The winter in your neck of the woods I'm sure has been rough, but that sunshine will be beckoning forth, will have all the blossoms blooming, the birds singing and nature waking up to wholeness again.  My very best to you always dear PJ...  A rock of strength to so many on BB.. with the positive extension you give.    Something I heard today:

 

Let the "Heaven within you, extend to others when on Earth"... 

 

And you my dear friend, that's exactly what you have given to all on this site.

 

Loving thoughts to you always,  Pattylu

[[...]]

Hello Pattylu,

 

After noting that the New York Journal had mistakenly published his obituary, Mark Twain said: "The reports of my death are greatly exaggerated."  After noting your very kind post, PJ said:  "Patty's post extolling any virtues I may have are greatly exaggerated."

 

PJ feels that he is no more special than anyone else who has recovered from benzo withdrawals, because they too, have encouraged others who are still suffering, to be patient, to never stop believing, and to never stop hoping.

 

Yours truly,

The Ghost of Mark Twain

 

I Thank you patty, for your kindness.  I hope the California Cowgirl in you decides to expand on the story we started somewhere on this site a long time ago, and you hone it into a viable novel, making you a recognized Author. 

 

Well, you take care now.  The very best to you.

 

pj