12-18 month support

[[be...]]

Hi Coop (and the rest of the fam )

I'm here. I'm reading along, but don't have much to add to the song. I've got little pep for pep talks and I'm tuckered from my own lamenting. So, silence seems ok for right now.

 

But I will share this, I've entered this world of genetic testing. It's some wild and detailed stuff. But a few bb's have thought that the reason some of us fair worse on benzos is because of a genetic difference, specifically something called MTHFR. So, I like to know things and I went ahead and got tested. Just like all the other bbs who have had this checked out, I too have the mutation! Now, isn't that something? What it means, I'm not entirely sure. The little I've gathered is that this MTHFR thing has to do with many things including the body's ability to detox itself and also the body's ability to make neurotransmitters. I'm still learning and boy is there a lot to learn. I'm not sure it's anything I'll treat right now, but I do see how it could be useful. There are some key deficiencies involved with it - certain b vitamins, folate, other things. I just think it's an interesting link among some of us bb's.

 

That's all for now. I do love you and keep you in my heart. I'm rooting for you and wishing you peace and joy.

 

Peace2

 

 

Hey peace, I'm very interested in the genetic testing. I don't know if my health insurance would cover this testing, is it expensive?

This could possibly be a big breakthrough for many in the future. I sure would like to know if I have the mutated gene. I have always wondered why a lot of people are able to stop the benzodiazepines and not have w/d symptoms. This could explain a lot.

 

My symptoms are up and down back and fourth. It's so cold here...30 below with the wind chill.

All of this snow and cold are not helping for sure.

Think spring!!

Hugs to all of you.

[[ro...]]

get the 23andme test Beulah. That's where I got my genetic testing done.

[[Co...]]

Rockfan...,....I jumped in Dec of 2013 as well and am still having w/d sx too...although I will say that I am healing and things are getting better. Like Peace, I am interested in the genetic testing to avoid any future bad meds. I have had negative reactions to almost every pain medication prescribed for my RA. My RA physicians give me the look and the lecture about " every medication having some sx and given time your body will acclimate to it".  I don't take any pain meds. I would like to know how expensive the 23Me testing runs?.  Thank you for suggesting it.  I think Green suggested it too. I am following as I think it is very interesting .....coop

[[Co...]]

Hi Beulah..., How are you doing now? ...Do you feel like you are getting your life back now?...I am really interested in the genetic testing too. I think it could save people alot of unhappiness and damage if we knew ahead of time which drugs were going to harm us.

.....I hope you are feeling really good at this point Beulah. I know you said that you are still getting cycling sx...hope it's more good days than wavy days....coop

[[Mi...]]

MikeJee -- Sorry to hear you are in a similar situation. Does she also have cancer too? So so sorry. I'll try my best for Disney. I have 3 months till then and I'm at 15 months into w/d. Hopefully I will be in better shape by then. Nothing like a little pressure when going through this.

 

She is away in Vermont with my son. Gone to her sisters for feb vacation. Being alone in the house knowing this is how it will be someday really sucks. Normally I'd enjoy a little guy time but not now. Not anymore. The intrusive thought and benzo fear are running wild with all of this.

 

I hope everyone gets out of their respective waves before the weekend. Tough couple of weeks...

 

No, no cancer for my wife, just something that is quite debilitating as well.  It's affecting our future and I don't know how to feel about it, or what to do about it.  It bugs me constantly but I will choose not to talk about it today, as it is quite personal and not about me.

 

Don't fear plans, it just sets you up for failure/a bad time.  If you fear feeling bad all the way up to the date of the actual plans, chances are that apprehension will cause anxiety/waves/a miserable time all by itself.  I learned that my biggest fear was the fear of having to cancel future plans and feeling embarrassed.    Since then I just say yes and attend everything no matter how I feel when the day comes.  Knowing that no matter what I will not cancel relieves me of so much anxiety and negative thoughts till the date arrives.  I have pushed myself to go to 3 major concerts, 2 of them I ended up having a great time at.  Lots of social events, lots of cub scout events, lots of things where I had to speak up in public or be the center of attention for a period of time.  Honestly the hardest thing I've had to do so far was to plow snow for 3 days on no sleep during a bad wave, and sitting through Thanksgiving dinner at a really hot and crowded restaurant during a horrible wave.  Those things were never meant to be very enjoyable to begin with!!  They would have been flawed for anyone, just happens it's harder on us folks in w/d.  The fun things, like you taking a vacation to Disney, will always have positive value to them, even if you have some low points during your vacation it doesn't matter.  What you take away from having said YES to life and YES to your family are so valuable.  Think of it, you're setting yourself up for a good time.  You would be going to a place that's only goal is to wait on you hand and foot and make you smile.  It should actually be easier to be there than to be at home stewing in your withdrawal and other concerns.  You have spent 15 months in a bad place, you deserve about 25 vacations at this point.  Treat your family and yourself to anything you guys could possibly want. My road has been just as hard as anyone's here, but I am thankful for something.  I am thankful I haven't wasted the last 16 months.  I have accomplished so many things and have had so many UNEXPECTED GOOD TIMES, all while feeling like total shit!  *inaudible laughter* 

 

Go see Mickey, you are so much stronger than you think.

[[ro...]]

The 23andme test is $99.00 Cooperten. It can be a little confusing as far as the genetic codes go but there is some kind of online "engine" you can put the codes through and it will tell you what they mean. I haven't done that yet, I forgot all about it until earlier today when someone else mentioned it.

[[Ko...]]

Just checking in.  Been off for over a month suffering the worst Sx ever. It took me about 4 hrs to read all the posts. Sadly, it seems that most of you, like me, are suffering severe & even new SX. I'm in the middle of month 15. Thought for sure I'd be a lot better rather than a lot worse.

 

I also caught the flu and was really sick with that for two weeks. Took Tamiflu, but not sure it helped, had a horrible cough for two weeks.  At the end of Jan I started to take LYRICA to ease my Sx. It worked really well for burning feet, but when I got the flu & was taking Tamiflu the LYRICA stopped working & actually caused more side effects, especially Akathisia.  For this reason, I'd be interested in genetic testing because I have paradoxal reactions to most sleep medication, in that they agitate me.

 

Presently, my Sx are severe stinging & aching lower legs, numb feet, muscle tightness around neck, feels like I'm being strangled.  Benzo belly pain and pressure, can't take a deep breath, difficulty walking because muscles aren't working and boaty feeling 24/7. Insomnia has gotten worse, probably due to pain caused by Sx. I average 2 hrs usually around 4:30 am to 6:30 am.  Sometimes I can nap and sleep a little more.  Basically, as you know we are on a torturous journey.

 

Thanks to all of you I am not on this journey alone.  You give me the courage to keep going. I'm glad

for Benzo Buddies because most my friends just can't believe Im still sick after more than two years when you count the months I was tapering. My family doesn't live here, but My 87 yr old mother came to see me and was very surprised at how sick I am. I'm glad she came because she now believes  me.

 

I'm hoping that we all start to get better in month 16 to 18. I agree with Coop that we probably won't be 100% for two years. But I'll take 50% better until then.

 

Wish many more windows for you all.

Korbe

[[dr...]]

Korbe...I hear ya.this just sucks..I am 10 months out, was in tolerance for years, and did a 26 month taper. I can't imagine how I would have been if i cold turkeyed.     While I don't like to see any of you suffering it gives me some comfort to know I am not alone.  I have terrible muscle pain, migraines, nerve pain, and chronic fatigue waves.  feel like I got bit by a tse tse fly

 

What choice do we have.  A few have left this thread since they felt better.  Me?  I am better but I was in tolerance so long and my taper was so difficult I don't expect an easy time or quick healing.  I hope to be pleasantly surprised.

[[Lo...]]

get the 23andme test Beulah. That's where I got my genetic testing done.

 

Hey rockfan, I was going to do 23andme and they temporarily can't run the health report :-( something about the lovely FDA. Sigh.

 

My nutritionist told me about Organic Metrix, it's pricey but most insurance companies will cover all or a portion of the cost ($300.00).

 

I really wanted to do 23andme for the health stuff...stupid FDA! 

[[pe...]]

23andme does the test and gives you results that are hard for a lay person to read. It costs $99. Then you can upload this information into several sites for clearer information. Some of the sites are free and some have a fee. I've so far spent $50 at these sites getting things interpreted. Some sites are http://geneticgenie.org, https://livewello.com, http://www.nutrahacker.com.

 

I'm also going to consult with a specialist in California about my results. I'll let you know how that goes. It's just a lot of information and I'm leery to take any supplements without getting more information. There are threads here on bb about the MTHFR mutation if you want to read more about that piece. But it's pretty complicated, at least for me!

 

Peace2

[[Co...]]

Korbe....Hold on buddy...I am at 16.5 months and months 12-16 have seen some of my most difficult waves. I have experienced sx that I have not had previously and some that had resolved came back. The good news is that it doesn't seem uncommon for us to have some brutal waves after year 1....and, for me.  My windows are brighter and closer together. I also have dizziness , boatyness, and a sense of things being slightly off visually for some or all of every day...although now I have had a couple of days of absolutely no boatyness or dizziness. I was sleeping pretty well, although broken into 3/4 stints from month 8-12 and now I have some nights again of insomnia. D/R showed up huge in month 15...after being free of it for months.

    I know things are getting better and my waves are still very much like acute .. .but my baseline has improved so much ( 85%-90%) and my windows are almost always 95%-100%)

....I really think it takes the whole 24 months give or take to get out on the other side of this..  It was good to see you on the thread today.. I hope your wave lifts to an improved baseline.  Here's to month 18!..  coop

 

[[Mi...]]

KORBE:  A little spin-off of the friend thing you touched on. 

 

It's like the uneducated just can't fathom still having withdrawal SX this far out.  The worst part is I have to keep explaining why I don't feel well on a certain day, or defend why I'm only drinking 1 beer instead of 10.  It's ridiculous! I'm getting really f-in sick of repeating myself, and simultaneously re-embarrassing myself reminding these clowns what my world is like sometimes.  It's like, hey!...do you even understand that it's hard for me to talk to people right now cause I feel so tight and nervous all over my body???!!!!  ....Of course you don't, cause I've only mentioned it seven times today!!!

 

I'm at a weird age (37) where I find half of my friends still want to party all the time, and the other half are totally mature, understanding, and accepting of my situation.  To the lesser half, it's like getting drunk and high comes before keeping a very long friendship in good standing.  They would rather just not deal with me at all since I can't act like John Belushi on any random Saturday night.  It's quite insulting and I have no need for them anymore.  They have made it clear where I stand with them.

[[Mi...]]

To COOP:  I very much want to echo your post.  Month 16 has been very hard for me but I have been choosing not to mention much about it.  The old SX have returned a bit, the pain and fatigue, dizziness, and DP is back, yet the revving and overstimulation is occurring less if you can figure that out.  (of course you/we can't lol)  I had a 2 hour window yesterday morning that was awesome.  I had no problem waking up and feeling alert within 5 minutes, I was thinking so clearly and positively, I could feel so much energy surging through me, but it was a calm energy.  During the last month I have been mostly crappy but still pushing through it and accomplishing lots of things.  I'm due for some really good days in a row soon. 

[[dr...]]

Hi all...I am getting hit with a major panic attack where it feels like my legs don't want to work and my hands won't listen.  have had these many times before but they suck every time.  I tried two sessions of relaxation tapes and no luck yet.  I walked around outside and even though I felt like I was going to collapse I didn't.  I know this is my brain telling me lies as I haven't had trouble walking or died yet   I have one meetiong in 20 minutes and then I am on vacation.

I knew I was in a wave when I have had three panic attacks in teh last four days and I had several horriific nightmares last night.  Also, I have the bubbling/twitching in my thighs for the last three days.  Ugh!  

[[mr...]]

Hi Sky,

 

Regarding dietary changes & tweeks, I'm with Jenny (and Peace?) in that it is an individual path, and you'll kinda need to experiment here and there to see what your body tells you about the food you eat. I think that in general, sugars/simple carbs (like white breads, pastas, white flour, etc) can "poke" at symptoms or perhaps create a bit of "rev", which can include an elevated heartrate.

 

Digestion in general takes "work" for the body to do, so this is why simply eating can sometimes "poke" symptoms as well. For some, many smaller meals spread out multiple times per day is helpful. Others find "fasting" helpful - some do a "daily fast", where they eat between only an 8-12 hour segment of the day, and then fast the remaining hours of the day to give digestion a "rest"...others choose to do a periodic fast, where they'll fast for a day every so often.

 

For me personally, when I was in the "heat" of the battle, I found limiting my sugar intake to no more than 5-8g per meal, and 35-40g per day, was very helpful. I tracked my nutrition & calories using myfitnesspal everyday (still do). I found that also, for me, my body read natural sugar just like table/added sugar, so the sugars in dairy (lactose) and fruits I would count in my 5-8g per meal / 35-40g per day limits. This was me, of course - not everyone was/is like this You'll figure out your "limits" too, and they'll probably be different than mine

 

I also found that larger meals consumed in one sitting were a "no-no" for me personally. Again, in the heat of things, I would only eat up to 300-400 calories in one sitting - most times it was 250-300 calories per meal. I ate very often throughout the day - like every 2-3 hours.

 

Also for me, eating "rich" foods was something I avoided for a time as well. "Rich" meaning heavily seasoned, especially with salt, or it could also be things like lots of other seasonings or flavors to it. So, basically most restaurant food If we went out to eat, it was only to places that I could order food PLAIN!!

 

Also staying away from artificial sweeteners, colors, flavors, etc. was helpful.

 

Foods high in potassium (but low in sugar & salt) seemed helpful, too.

 

I ate lots of the following: nuts, seeds, chicken, fish, vegetables, some beef, some low-sugar fruits (berries w/ seeds), protein shakes & bars (PLAIN protein powder - with no added amino acids, just what comes naturally), no-sugar ice cream (I love ice cream!); I also cooked w/ healthy oils (olive, etc).

 

Those were just some things that seemed to help me along the way They may or may not help you, but hopefully it can give you some ideas to start with . I hope you're feeling better today Sky!

 

Mrs.

[[Co...]]

Drew.  man oh man.  You have had a run of it..I am so sorry you are still in a wave. Sometimes I felt like I just kept doing acute over and over again. It gets better Drew. You are dealing with it so well. I hit the quilts when things turn to panic and scary sx. I always feel entirely wimpy when I read posts like yours that talk about hard waves and working through them. ...I hope this lifts for you...it's hard to feel like you are dying and stay in contact with knowing that you are not. Thinking of you Drew.  Glad that you can go home after the 1:00....keep us posted....coop

[[Sk...]]

Mrs, thanks. I was following some of these things, but this far out, I thought it wasn't necessary !!!  Really stupid. I still don't get the gravity of what we are going through , I should know better by now.

 

i will start testing a few combinations.

 

Had a good day, so I guess tomorrow will be ba d ? Hope not but expect to hear me complain ! 

 

Nice posts, I like the quote about having to explain to people a zillion times and justify yourself for not wanting to drink alcohol and stuff like that. Like it's the end of the world if we don't drink ! With what I have seen, I couldn't care less !!

 

Hope the Easter bunny brings me some normality! 

 

NIght everybody, I am going to read a nice book in bed.

[[Co...]]

Sky,...it is so reassuring to me to read your posts. I am also on the good day/bad day pattern . This is completely new. It seems to have been consistent over the last 3/4 weeks. ..Yestwrday...terrible....just like mid acute....today a sunny window and an 85%-90% baseline. Like you I am preparing for a wavy day tomorrow.  ...I think this is a good indication of more healing. Really hoping for considerable improvement again at month 18....Enjoy your good day Sky......coop

[[Co...]]

Mike, .. .you are just a few months ahead of me . Dec 3 is my jump date. All in all , despite cycling sx and waves I think there is a lot of healing going on underneath it all. I am setting my sights on month 18. I am not as brave as you are about pushing through .. but I am 65..lol...however we do it we all get there. ...thanks for the post...it was encouraging and reassuring....somehow we need constant reassurance and encouragement....coop

[[mi...]]

Hi coop....

 

I am still  checking on u.....You have so improved since I first read your posts....I hope u can keep in mind that I had so many of the same s/x as u and even though I healed sooner it means nothing in the long term.....u will completely heal...it is just taking u a little longer...

 

Hugs to u coop....minnie

 

 

 

[[Co...]]

Bless your hear Minnie...you got me through one of the worst times of my w/d.  That time was such a nightmare. I will always be so grateful to you...I am so glad you are healed. I read your success story ...such a reassurance to those of us still healing. How are you now? ..Do you have your life completely back now?...You are so kind to come on to the thread and offer me support. My head sx are so much better. I still have that internal sensation of motion and some dizziness from time to time...but the actual pressure and head fullness is only intermittent...but it still scares me when I have it

. ...thank you so much Minnie.  .coop

[[be...]]

Hi Beulah..., How are you doing now? ...Do you feel like you are getting your life back now?...I am really interested in the genetic testing too. I think it could save people alot of unhappiness and damage if we knew ahead of time which drugs were going to harm us.

.....I hope you are feeling really good at this point Beulah. I know you said that you are still getting cycling sx...hope it's more good days than wavy days....coop

 

Hey Coop, as the layers of withdrawal peel away very slowly...yes I am feeling better but it's still an everyday struggle. The waves are more frequent this month, I think because I'm healing a little faster now. This month has been so up and down...good day bad day.

It's mostly the nerve pain still nagging me. You know the doubts when in a wave...like my legs will never heal.  I've been having some broken sleep with intrusive thoughts and some mild health fears.

This is all nothing I can't handle, it's my life right now and I have been here before.The doom and gloom halo that hangs over my head is almost gone.

Through this whole process I kept saying " if it doesn't get any worse than this I'll make it through".

Well, at almost nineteen months out I have my doubts that any of my symptoms will worsen...at least that's what I'm praying for.

I desperately need my leg pain and numbness gone because I am hoping to drive this spring.

Driving would be huge for me!!!!  I dream of driving on a long road with the radio playing and the wind in my face.

My weight is coming back on and I feel healthier. I still have to watch everything I eat because I'm so sensitive to so many foods...especially sugar!! To eat a pancake with syrup and drive the same day without any problems.....pure bliss.

 

It's thirty below with the wind chill...brr. Looking so forward to spring.

[[Co...]]

Beulah, you are sounding good. Sky and I also have the good day /bad day pattern. That has to be a sign of more healing.

....I completely understand the pancake with syrup and a breezy drive. I dream of a full double latte with a chocolate croissant....and an effortless mind morning volunteering in my grandson's classroom....We will get there.  We have come so far and things are so better. Thank God we are not at the beginning..  coop

 

[[Wo...]]

Hi folks. I'm not yet in the 12-18 month group, but I wanted to jump in here and ask folks that were ahead of me a question. Has anyone here had the palps throughout their taper/wd and they've disappeared? I've just had so many sx fade away, (which I'm very grateful for), however the palps have just been constant for a year with no sign of backing off. Really starting to question if they're wd related. 

[[dr...]]

Coop-Thx for the kind words.  I'm okay.  Just a bit beat up.  I spoke to my therapist on the phone. I only check in when I need a boost.  He said my panics are not setbacks just part of the recovery.  He also ssid while we are doing well stress is still accumulating and it will come out somehow.  Vacation, work, friend in town, prformsnces,  etc,,,he said it's not suprising. I know they are but its just so difficult sometimes.  I try and just let them do there thing but once in awhile they get the best of me. ;(.  I ended up cxling my internal meeting and took off for vacation early. Felt bad about "giving in" but I didn't think it was worthwhile to fight it the symptoms.  Relaxing now before I have a show. 

 

Spelling is off more than usual cause on my phone.