13 months tomorrow

[[sl...]]

 

On September 17th, I entered a window of feeling so much better.  Nothing had disappeared, but I was sleeping better and getting out of the house and enjoying life.  I was getting an average of 6 broken hours sleep with barely any of the morning nausea and fear. 

 

Just a few days ago I started my menstrual cycle and things have rapidly gone downhill.  Last night was so bad!  Constant nauseating shocks all night coming from my legs and stomach, zaps in my face, twitches and spasmning all over my arms and legs that would last several minutes.  I also had something return from several months ago; hypnagogic auditory hallucinations (hearing doors shut and tin cans clanging).  I also had a lot of lights flashing in my eyes... Way more than usual!  This is unbelievable to me.  I know this crap isn't linear, but really??   

 

Even during my window I didn't feel like I was getting any deep sleep.  I'm certainly getting none now!  I am very underweight with so much muscle loss and my hair is terribly thin.  I'm so afraid of the long term consequences of all of this.  Please, someone tell me that your body looked and felt like hell during wd and returned to normal again!  And that your deep sleep came back after having light and choppy dream sleep for many months. 

 

Btw, my cycle last month lasted 12 days!  First time in my life that it lasted more than 6-7 days.  Another reason I'm afraid of what this crap has done to me.  Sorry for my pitiful post.  I'm ready to go apeshit. 

 

[[Ni...]]

I think it was FloridaGuy who shared this podcast.  Wayne Douglas a benzo survivor speaking to Dr. Breggin about his journey.  He also had hypnic  jerks.  Good stuff.

http://drpeterbregginshow.podbean.com/

 

 

 

[[me...]]

Sleepless, sorry to hear that the window has closed, but I'm sure you will see another!

 

The experiences you are having certainly seem to line up with a hormonal dysfunction as at least part of your issue. September 17th lines up exactly with ovulation, when your natural progesterone would rise quite rapidly, as shown in this chart:

https://www.britannica.com/science/menstruation

 

At the beginning of your period, progesterone drops precipitously. I often had severe insomnia at that time (menopausal now). Prolonged menses would also indicate dysfunctional hormones.

 

If this is the case, you should have another window about 14 days from the start of your period. Something to look forward to! Do you track symptoms?

[[Ru...]]

I am concerned about the effect hormones have on my insomnia too. How old are you if you dont mind me asking?

 

The fact that your brain knows how to balance is a really good sign and another windows might be just around the corner. Also, if it is precipitated by hormones then it is only due to drug damage and this should rebalance too.

 

Strangely my period has come back after nine days this month and I'm puzzled about this. I am so hoping I'm not going into the menopause because I cant take that shit on top of everything else.

 

I wouldnt worry about your body being irrevocably damaged.

 

I'm so sorry you are suffering. You saw a good change and that will come back. Absolutely no reason why it won't.

[[Ru...]]

Did you get a full thyroid panel done?

Just a thought due to hair loss.

[[sl...]]

Niners,

 

Thank you so much for that link!  I just listened to the whole thing and I'm blown away.  His story could be my own.  I cannot beleive how determined he was to win his case while spending all of that time and money to do so.  In the end, he lost and it is so unfortunate.  I am like him as I'm determined to speak up and write to local congressman and whoever else that will listen once I'm feeling up to it.  At minimum, I deserve a heartfelt apology from the doctor who got me in this mess and then continued to drug me up to my eyes balls after the symptoms started!

 

 

[[sl...]]

Meowie,

 

Interesting as that timeframe does line up precisely.  I cannot make a connection to my cycle during previous months as almost every day was bad, but it certainly seems to be more evident as of now. 

 

Rubiks,

 

Yes, I had a full thyroid panel and all seemed normal.  I saw an endocrinologist for it.  You should listen to the podcast that niners just posted.  I would love to contact that doctor.  I couldn't beleive my ears when he said to stay away from herbs like ashweghanda.  I've connected the dots with that herb as I had a terrible reaction to it after a naturopath gave it to me along with about 5 other things she shouldn't have.  She, and one other "natural" doctor swore to me that they would cure me.  Ha!  They have absolutely no clue what we are dealing with.

[[sl...]]

More about Wayne's case:

 

http://www.japantimes.co.jp/community/2012/03/13/issues/new-zealander-loses-legal-fight-over-crippling-med-addiction/#.V_FTL2S9Kc1

[[Ru...]]

Just listened to it. Unfortunately I've heard it a million times before...nothing surprises me now.

 

I did LOVE that he mentioned herbs. I couldnt tolerate ashwaghanda either and that was when I was relatively stable.

The podcast has made me come off my daily camomile tea which I doubt will make any difference but you never know. And YES all these alternative practitioners havent a clue what they are dealing with. NOTHING has ever helped me and your chin would drop to the floor if I told you all of the things I have tried over the last twenty years. So may expensive practitioners PROMISING to heal me. The very last thing I tried was acupuncture and she was ABSOLUTELY ADAMENT that she could heal me; I think these people are well meaning but completely deluded.

 

I love Breggin. I wish he was my Uncle or neighbour or someone I could talk to.

 

How are you today MT? Does MT stand for Minnesota?

 

I'm going through a particularly bad sleeping patch. Last night I just couldnt believe what was happening to me. I am in shock at how little sleep I am getting. I so want to enjoy a day in this beautfiul autumn sunshine we are having here but I don;t really see the point as Im so sleep deprived.Last night I cried over missing my daughter's life (she was getting excited about xmas and I couldnt even pretend to be positive). I so want to be the mum I am underneath this, which is a really rather fantastic one if I do say so myself 

 

 

[[sl...]]

Rubiks-

 

Just getting by, thanks for asking.  My symptoms at night are still strong and driving me insane.  I'm somehow managing enough sleep to get by though, 4-5 broken hours.  It seems my need for sleep is starting to gradually override the symptoms, even when they are horrible.  In previous months, a night that would start with constant jolts meant I would get 0-2 hours.  I wish I could just have this amount of sleep due to insomnia and not all of these horrible symptoms!  I'm so nauseas from them.

[[Ru...]]

4-5 hours isnt enough though is it but sometimes I am grateful for that. I need six and a half to feel human.

It sounds like you are giong in the right direcion. I imagine by xmas you will have upped that average an hour or two.

I'm sorry you are still suffering.

[[sl...]]

Today is the worst day in 3+ weeks.  I cannot beleive how my night went!  Between my 2 hours of very broken sleep, I was constantly spasming and having what are called pallatle myoclonus.  I swear, I should have a team of doctors studying my long list of unnerving symptoms that probably less than .01% of people ever experience in thier life!  This pallatle thing is an uncommon condition where a sound comes from the inside of your mouth.  I can feel it pop and it sounds like my tongue just clicked very loudly.  Another lovely variation of that one is a sound like my teeth just slammed together... When they 100% most definetly did not!  I won't even tell my husband about these 2 symptoms out of fear that I will be looked at as a freak show or that I'm just a crazy person making all of this bizarre shit up.  The only person I tell "all" to is my mom.  I wish I could say that these things are my worst symptoms.  Oh boy, they are far from it!  The damn electrical surges and spasms that send my heart pounding are the worst.

 

I'm overwhelmed today.  Just cannot understand this process and why I've been so strangely and horribly affected by these discusting drugs.  After having an "acute" night once again, I'm fearing that the worst is not behind me.  So scared and not sure how I will cope if this lingers on.  Please, someone wake me up from this nightmare!!

 

Anyone else going through hell at 13 months off?  Anyone else want to force feed your doctor these damn pills? 

[[sl...]]

Rubiks, I just read your message.  Geez, it would be such a miracle if I was getting more predictable and better sleep by Xmas.  I looked back at my sleep log and probably shouldn't have.  At month 6, I entered a period of change where I dropped my medication (that I once needed to get even a minute of sleep) and suddenly I was getting an average of 5 hours sleep that month.  Each month slowly deteriorated until it turned around again for those 13 days just recently.  Does this mean I'm only due for a window every 6 months?  I know I'm being rediculous, but it really makes me wonder!  Really trying to be a half glass full kind of person, but this process is making it near impossible.

 

 

[[Ni...]]

Jessica,

Have you considered a sleep study?  I had two whilst taking benzos so obviously not of much help.  My doctor recently referred me to Stanford University for another one.  I haven't scheduled it yet.

Below is a link that I came across from Lee Hardy she's a BB member don't know her username.  It really gave me hope.  She talks about her healing experience with the waves and windows.  I found it very inspiring.  She also counsels folks going through benzo withdrawal and anxiety.

 

[nobbc]http://youtu.be/EBq85HxAJRA[/nobbc]

 

Edit: disabled link.

~Colin.

 

[[sl...]]

Niners,

 

Thanks for the video.  Couldn't do the math on how long it took, but it sounds like it was at least 3 years before she healed. 

 

I did a sleep study when I was 2.5 months off.  I could not sleep a wink without mirtzapine at the time so I had that in my system. I was told I woke 22 times and slept close to 6 hours- which at the time was one of my best nights.  I was used to getting about 3 hours of broken and drugged sleep.  Anyway, the study showed no form of apnea and nothing came up on the EEG.  I'm not sure that repeating the test will prove anything that can be fixed.  Idk.  I just wish there were more here who had and healed from my many strange symptoms.  I hope you are feeling good today!

[[wh...]]

sleeplessMT, I'm so sorry that this is still happening and I'm sure it is so frustrating being so far out at this point. Have you seen any doctors or specialists to give advice on protracted w/d symptoms? I would be curious about this.

 

I'm still taking mirtazipine to get sleep pass symptoms and wonder how I'll be able to without it. But you are so strong and to get even 1-2 hours of sleep without any drugs says that to me. Keep faith and I'll add you to my prayers today.

[[Ni...]]

Not sure how long it took her but most importantly she was functional and working throughout half of her recovery.  Not sure if I'll do another sleep study although my family is pushing for it.  Don't see any reason for it except to make them happy.  I had a great 5 month window (80% healed) at 4 months off and unfortunately haven't returned to baseline in almost a year.  I had crazy panic attacks within the first few minutes of falling asleep then followed by sleep paraylis upon awakening.  Very scary! This went on for 2-3 months and eventually went away.  Panic attacks still return but I believe it's no longer benzo related, it's caused by GERD. Praying the Hypnic  jerks along with other sleep disturbances fade away very soon.

[[Co...]]

Jessica,

Have you considered a sleep study?  I had two whilst taking benzos so obviously not of much help.  My doctor recently referred me to Stanford University for another one.  I haven't scheduled it yet.

Below is a link that I came across from Lee Hardy she's a BB member don't know her username.  It really gave me hope.  She talks about her healing experience with the waves and windows.  I found it very inspiring.  She also counsels folks going through benzo withdrawal and anxiety.

 

[nobbc]http://youtu.be/EBq85HxAJRA[/nobbc]

 

Hi Niners,

 

There is no reason why you should know this, but we banned this member well over a year ago for attempting to use BB to promote her dubious commercial services through our PM system (despite being warned not to do before the fact). Please do not link again to any of her pages at FB, YT or anywhere.

[[Ni...]]

Jessica,

Have you considered a sleep study?  I had two whilst taking benzos so obviously not of much help.  My doctor recently referred me to Stanford University for another one.  I haven't scheduled it yet.

Below is a link that I came across from Lee Hardy she's a BB member don't know her username.  It really gave me hope.  She talks about her healing experience with the waves and windows.  I found it very inspiring.  She also counsels folks going through benzo withdrawal and anxiety.

 

[nobbc]http://youtu.be/EBq85HxAJRA[/nobbc]

 

Hi Niners,

 

There is no reason why you should know this, but we banned this member well over a year ago for attempting to use the BB PM system to promote her dubious commercial services through our PM system (despite being warned not to do before the fact). Please do not link again to any of her pages at FB, YT or anywhere.

 

Kindly noted.

 

[[sl...]]

Thanks niners.  I hope you get a break soon too.

 

WH,  I have seen a lengthy list of doctors including several specialists (endocrinologist, 2 neurologists, 2 psychiatrists, a pain specialist, plus several pychologists, GPs and natural doctors.  Only 3 people on my list know how damaging these drugs are.  None of the appointments were helpful to me as I already had the information they knew.  There was a pychologist who showed me pictures of how benzos damage the brain and said it could take 5 years to heal.  Her only helpful advice was to learn coping skills, eat healthy and excercise. 

[[Co...]]

Kindly noted.

 

Thank you for understanding.

[[Ru...]]

Hi MT I am feeling much the same as you. Read my recent post on the protracted section. Our insomnia is different in nature but the the fear, debilitation, and frustration is the same.

 

I too dont know what to do. The options are so limited. I wish I could take a drug to get to sleep but this is not an option. I have been beginning to wonder if I have some sort of unusual brain damage. This sort of thinking is due to my one hour sleep last night. I am losing hope.

 

I am so sorry you are suffering too.

 

[[sl...]]

Rubiks,

 

I read your other post- I'm so sorry you are suffering too.  Nights of 0-2 hours sleep always derailed me and I had 3 days straight of  less than 2 hours sleep right at 12 months off. My last 2 hour night was about 2 nights ago and the one before that was 3 weeks ago... A 3 week break, holy cow! You are one year off so I'm praying you are headed towards a bit more sleep like  I recently had.  The last two nights were hell with so many symptoms, but I'm trying to remain hopeful that this will be a short wave.  I can certainly identify with the morbid thoughts of self destruction, as you posted on the other thread.  It hits me worse in the morning too.  Children have certainly saved many lives in this mess, I beleive.  How could we possibly end it all and never see their precious faces again?