12-18 month support

[[pe...]]

Jenny-

What they can do is tell you which nutrients your body is lacking or which body systems are out of balance. In my case, there are simple things like the right kind of b12 and folate (rather than folic acid) that can potentially make a big difference. Basically they can tell you what kind of model you have and what kind of gas and oil to use and which to stay away from. You wouldn't put diesel in a car that takes unleaded and our bodies kind of work in the same way.

 

You're amazing. You've come so far. No matter what you do, it's gonna get better.

Always on your team,

Peace2

[[mr...]]

Returned from doc where I was thinking of my fellow buddies who get nervous.  I was so boaty with my heart racing it was silly. When he first took my BP I told him wait fifteen minutes. Lol. Went from 135/85 to 128/79 which is still high for me. 

We had a long discussion on my migraines. He was worried about my vision changes but relaxed when I've told him I've had this for many years it's just too often now. He asked questions and did a thorough check and felt I had just migraines and at this time didn't warrant a referral or more testing. I agreed.

We ordered a natural remedy off amazon made to prevent migraines which consists of the exact dosage of the minerals and vitamins I was going to start to take. We will add CoQ10 as needed.  The mag/b2/butterbur root takes about ninety days to reach full effect of 50% reduction so we are going to have me take propronolol for about a month to help break the cycle. I will wean as the vitamins start working.  They recommend 80mg day for migraine prevention but we will start at 20 per day and I will ratchet as needed(I'm still gun shy about any med). 

Lastly, he recommends trying gluten free as many people had success w that diet in preventing migraines.

Even though I may still get lots of migraines right now I feel like I at least have a gameplan as before I was just floundering for a life raft every few days.

 

Ps-brought him a copy of ashton. 

 

Drew, such good news!  Coincidental, but I was just reading Perseverance's most recent post regarding the brain's production of ketones, and utilizing MCT oil in order to help the production of this, and/or eating a "ketogenic" diet.  I don't follow it entirely, but ketones are something the body produces that help brain function and our energy levels.  Anyways, the diet is, for all intents and purposes, a low carbohydrate/high(er) fat/protein diet.  I am curious if going gluten-free is indirectly helpful because it coincidentally lowers our intake of carbohydrates and produces an environment conducive to a higher ketone production in the brain...or because gluten actually plays a role in migraines?  Ketone production can be increased as well by taking MCT oil, or by something called "intermittent fasting".  It's all new to me, and I'm still trying to process/understand the information - but kinda cool, too   Anyhoos, something I was wondering!

 

I think I owe everyone an apology on this thread   Mr kindly mentioned to me last night that I have been a bit "testy" lately, and it got me thinking throughout the day...and he's right.  I think I've been experiencing a bit of the "benzo anger" (I can't really call it "rage"...I don't think anyways!)...I'm not sure what to call it exactly.  Maybe "irritability"?  Anyways, my apologies if you've felt the heat   Now that I know, I'm trying to be more tuned in and not overreact.  Hope y'all still love me

 

Hope y'all are having a great night!  I am sleepy and will be heading to bed soon   Take care all,

 

Mrs.

[[mr...]]

Hi guys,

Drew, thank you so much for explaining the process to me. Please keep me posted as I'm very interested in how it all works. I'm glad your doctor appt went well today, and I'm sure your gonna be feeling better soon 

Green-- sorry your getting hit today, but you sound so strong and positive. I can really hear the healing going on underneath it all! Thanks for your reply too.

Peace-- I'm so interested in that testing, but a lot of it confuses me. So what can be done once they know all these things about you? I mean I don't understand what they can do for us? Keep me posted, I'm very interested.

Hi Coop-- thank you so much for your reply, you always know how to make me feel better. I really, really hope that once I heal that I never have to deal with anxiety again. I'm trying to stay positive, because I have had big chunks of time where I had no anxiety at all. I got bumped off of BB last night too, I think the site was down, not sure?

Hi Beulah-- I saw Parker's post and I'm gonna try that lotion, I'll let you guys know how it works.

Nova-- hope your doing good and feeling better tonight

Sky-- I hope your feeling better too, seems as though we all are still getting hit this far out. I think your in month 16? That was a bad one for me, you'll get through it..

 

 

Well guys I'm 18 months off tomorrow! Not sure if I want to celebrate or cry lol...

Love you all, jenny

 

Jenny, don't forget that Healinghope experienced a "mega anxiety wave" at 18 months off   Sounds like you're right on track for another major corner turned soon   Love you girl. 

 

Mrs.

[[je...]]

Peace- can you pm some of the info on where I can get tested? Thx

Mrs-- thank you! I hope I am following HH as I know she went through a major anxiety wave and is doing much better now.

No need to apologize Mrs. We all have our moments, but honestly your one of the sweetest people on here 

[[Gr...]]

Green ... "collapsing" ... probably just wishful thinking on my part ... maybe you can medicate an entire culture into submission ... and maybe I am just an outlier shouting in the wind ...

 

And perhaps these are just the musings of a fella getting older ... and mourning what he sees sometimes when he walks down the street ... and I can't stop caring ...

 

Caring too much might kill us, and it won't change anything.

[[Gr...]]

Green, ...GAWWW.. that's exactly what Sky predicted....that she would do that maddening condescending belittling thing, "why do you need my validation?"..  eerrrrr...  Your reply was so reasonable, unbelievably restrained and fitting. Yes, I can tell you as a former cancer patient that counseling for cancer peeps is ALL about compassion, encouraging of vulnerability and support...full of compassion and unconditional caring...and I can tell you , for me, w/d has been so much worse than my cancer surgery. I will qualify that somewhat by clarifying that I did not require chemo. ...Still it was just a completely different process.

.....Yes, what the heck would we do without BBs....The medical professionals , as nice as some of them are just don't get it...Green, I wouldn't be able to go on a bike trip yet either...I am doing good to go shopping ...still .  Makes me depressed when I think about it, but I think it will keep getting better for all of us. The thing I loved about Maxwell's story was that she qualified her statement of "healing completely at a year" by stating right up front that that was not quite the whole story. She went on to say that over time she realized that her healing actually continued for several more months.

    You are so not on this train by yourself.  Your stop is coming up..  thinking of you Green....coop

 

Coop, I don't feel terrible, because the woman is voicing what the whole medical establishment believes, they just don't want to hear it.  It's not something they can treat -- I don't know why they feel that way.

 

I understand "the look" a little better now.  "The look" is, all right, that's enough carrying on, you're taking this way too far, you're too into your symptoms.  If you weren't so focused on symptoms, they would go away.  Or, and this is more likely, everything you think you're going through is depression-based -- basically, you're imagining it, and if you would stop, get treatment, it would go away

 

They don't believe us.  Her look is telling me, this is all in your mind.

 

Hope you're feeling somewhat better, so I can have that to look forward to!

[[Gr...]]

 

Happy 18th Anniversary, Jenny!

[[Co...]]

Mrs. ...It is so tricky to express tone and intent in a post...and we all get edgy. Some months ago I sent not one but a few very snarky posts to someone who constantly questioned the value of w/d and talked up reinstating. I was furious because I was getting up every day promising myself not to reinstate. It was only after a few months that I realized she was really struggling ...I felt terrible....We have all been there.

....I wish I had a little more of your easy peesy approach ( although I know it's not all easy peesy for you either), but I just don't have it like you do. When I am suffering....I suffer..and get on here and beg for encouragement and reassurance. ..I am sure I have irritated and offended every person on this thread many times...So far I haven't been kicked off...thank god....You're good here...coop

[[dr...]]

Mrs-the gluten migraine connection seems to be strong. I never realized it.  It has something to do w internal inflammation.  Lots of research coming out that the inflammation causes a heck of a lot of problems health wise.  Eventually I'll do the paleo.  The last time I tried it my anxiety went crazy but my doc said that can happen in the beginning.  So much so much to know.... One of the ingredients in my migraine vitamin thing is butterbur which reduces inflammation.  Can't hurt. Keep you posted.  Btw-great job on exercise today.  You too coop.  I'm still man down 

[[No...]]

Good Morning ... well, had a couple of quiet days, woke up with what feels like things ramping up again ... will see how the morning goes ...

 

This weather sure is messing with me ... another housebound day today ... gonna take a couple of days to clean things up and the buses are down again today ... and we have more coming on Saturday ...

 

Feeling lethargic and dull ...

[[Sk...]]

Sky....I am not sure what you mean by " vibrations right in my heart"...but it doesn't sound nice at all. ..I have had palps and bouts of brief tachy cardiac but not vibrations right in my heart....that has to be scary. Did it go away?  You are having tough times and I think  of you every time I read your posts.

    I hope you slept and wake up this morning without heart vibrations....so glad you have Mr. Sky there with you through these tough times.. feel better Sky....coop

 

And my vibrations have stopped this morning ! Thanks ! 

 

I don't know how long it will last, according to my log, it should last about 6-8 hours, that's how it has been in the last month. Vibrations in the heart are so scary but the heart is not affected, sue said she was having the same. 

 

Thanks for your kind thoughts, I don't have close friends or relatives giving me this much time, so trust me, I really appreciate  you taking the time. I am so lucky that mr SKy makes the effort of trying to understand what it's like. I am so grateful to him and the forum, you guys are giving me the strength to pull through.

 

HOpe you have a better day too,

 

Sky

[[No...]]

Sky ... good to hear things have let up for a while ... hoping you have a quiet day ... 

[[Sk...]]

Sky ... good to hear things have let up for a while ... hoping you have a quiet day ... 

 

Thanks Nova. I am "just" contending with a lot of anxiety.

[[No...]]

Sky ... that is rough ... I have had a couple of "quieter" days ... hope they stick around ... 

[[Sk...]]

Good to hear that Nova. Do you do more on quiet days ? do you ever get the frenzy of doing all that you cannot do in a wavy day ? Usually I do, but today, I am such a shock from the last days, that  I am keeping very quiet !

[[No...]]

Sky ... I don't do the frenzy thing anymore ... learned my lesson last summer ...  I mostly do only what needs doing ... and with this weather have not been able to get out much in the last six weeks ... just waiting for Spring ... well Spring is here tomorrow ... now waiting for the snow and ice to melt ...

[[No...]]

Well ... did have a pretty easy 3 days ... and got slammed again a couple of hours ago ... seems to have peaked and is now just sitting there doing its thing ... hope everyone is having a quiet day ...

[[Fr...]]

I'm sorry for everyone's struggles here. I stay away for a while to try and think of other things but honestly wd is all consuming lately.

 

Since I took 5 mg of Elavil about 2 days per week from last June till mid October, my therapist tells me to only start counting months since October.  That puts me at 5 months out according to her, but does that seem correct?  I am really 13 months out from no benzo.

 

I am really in a rough spot.  The windows only come once every 10 days or so and who knows when next.  I am really sick and not feeling at all like I'm making progress.  I get bad nerve pain of what feels like an over active cns that is so painful, brain symptoms of SI constantly that is not from my thinking process (the brain chemistry is so far off, the sensation is intense like my brain is on fire) and neck and back pain.

 

Living is a struggle.

 

My husband called the British Tranquilizer Project for me and himself, to give us hope and reassurance, and whoever he spoke to said, everyone heals and that they've been doing this for 20 years.  We needed to borrow a land line to call though, from the US and may get one so I can call for help more often as needed.

 

My therapist says everyone heals too, but I asked how many clients she's seen over the years for benzo wd, and she said about 50.  Before she told me she knew thousands who healed, but that was from being a part of a Yahoo Group she helped moderate for many years before it closed down and I question who she could know that everyone healed from that because it'd be like this forum.  I really want to know what is true.

 

I have such doubt because I am such a bad case of pain and SI brain issues.  If I need to medicate I want to know my reality.

 

Does anyone else have more sources?  I've been reading Bliss's, Bloom in Wellness Facebook page every day and she says everyone heals too.  I just worry how long I have to hang on for, and am filled with terror over that, since my every other day windows stopped.  I'd even be happy if the waves would lighten up.  I don't expect perfection.  I'd be happy with remaining fatigue or some pain if my mind felt happy and would allow me to want to live.  Does anyone else have this?

 

I've considered trying an AD for some help, but fear that too.

 

I used to be so full of life and happy.  What happened to me?  I live in the twilight zone and feel like a freak.  I do believe I will heal one day but fear being able to cope as long as it may take.

 

Do symptoms begin letting up even gradually by month 18 or so?  I'd be happy for any lift right now. 

 

Parker felt that Remeron helped her to heal.  How does everyone feel about ADs for assistance?  I've had poor success with them in the past and had that Genesight test done which shows me missing the metabolic pathway for  most TCAs even though I felt better on that tiny bit of Elavil 3 times per week, than any SSRIs and SNRIs.  I could only take others for less than 7 days before feeling pretty bad or having bladder issues.

 

Any thoughts?

 

Love to all and I'm glad to see that many of you are having nice windows,

Lisa

[[No...]]

Lisa ... I cannot say anything to other drugs or supplements because I have never used any ...

 

My stuff does seem to be lightening up ... and when a new wave hits it is very intense for a while and then seems to flatten out after a few hours ... happened for me again this morning after a three day respite ... not a window, just a respite ...

 

And I seem to forget how intense things get between episodes and get tangled up in health fears for a while ...

 

Everything I have seen and read, everyone heals eventually if they stay with it ... and everyone seems to have a different process ...

 

And I have stopped listening to anyone I have come into contact with regarding this process ... since October I have settled into just being where I am and hanging out here on BB ... and this is a long, long haul ...

 

Sorry I can't be more "help" ... I can only encourage you to stay with it and you will come out the other side ...

 

[[Fr...]]

Thanks Nova, just your kind words and the fact that you comment is greatly appreciated.  I am happy to hear that matters are lifting for you.  You are always a source of calm strength.

 

Lisa

[[dr...]]

Hi all...getting bad panics lately.  In the middle of one now.  Feels like my right hand can't work which is a lie since it is typing.  This too shall pass.  I am jsut saying to myself to wait thirty minutes and I will feel better.

[[mr...]]

Hi all...getting bad panics lately.  In the middle of one now.  Feels like my right hand can't work which is a lie since it is typing.  This too shall pass.  I am jsut saying to myself to wait thirty minutes and I will feel better.

 

Drew,

 

I had "panic" stuff try to notch up during last month. It lasted about 6 weeks, on/off again. All just lies and garbage, of course. This month it has tinkered out, leaving me better able to handle stress & such. Albeit not perfect (*YET*), but better than before. Resolve & confidence have returned a bit in its wake also.

 

You are correct that "this too shall pass". The dumb lies that benzo withdrawal tries to fabricate sometimes, right? Geez.

 

Are you working today? I am on my morning break and taking my ritual 15-minute walk! Still hungry from yesterdays expedition But I want to lose a few pounds, so just sticking to my normal daily routine for caloric intake. (Dang, I want me some ice cream! ) Any suggestions for some good protein snacks? I'm experimenting this week!

 

Mrs.

[[Gr...]]

Sky....I am not sure what you mean by " vibrations right in my heart"...but it doesn't sound nice at all. ..I have had palps and bouts of brief tachy cardiac but not vibrations right in my heart....that has to be scary. Did it go away?  You are having tough times and I think  of you every time I read your posts.

    I hope you slept and wake up this morning without heart vibrations....so glad you have Mr. Sky there with you through these tough times.. feel better Sky....coop

 

And my vibrations have stopped this morning ! Thanks ! 

 

I don't know how long it will last, according to my log, it should last about 6-8 hours, that's how it has been in the last month. Vibrations in the heart are so scary but the heart is not affected, sue said she was having the same. 

 

Thanks for your kind thoughts, I don't have close friends or relatives giving me this much time, so trust me, I really appreciate  you taking the time. I am so lucky that mr SKy makes the effort of trying to understand what it's like. I am so grateful to him and the forum, you guys are giving me the strength to pull through.

 

HOpe you have a better day too,

 

Sky

 

Sky, it felt like "vibrations."  I was so revved and my chest so tight, it felt like my innards were vibrating, including the heart.  and I had rapid heart rate, with skipped beats every 7-10 beats.  fortunately, it was only 1-2 days.  but scary as hell

[[Sk...]]

I'm sorry for everyone's struggles here. I stay away for a while to try and think of other things but honestly wd is all consuming lately.

 

Since I took 5 mg of Elavil about 2 days per week from last June till mid October, my therapist tells me to only start counting months since October.  That puts me at 5 months out according to her, but does that seem correct?  I am really 13 months out from no benzo.

 

I am really in a rough spot.  The windows only come once every 10 days or so and who knows when next.  I am really sick and not feeling at all like I'm making progress.  I get bad nerve pain of what feels like an over active cns that is so painful, brain symptoms of SI constantly that is not from my thinking process (the brain chemistry is so far off, the sensation is intense like my brain is on fire) and neck and back pain.

 

Living is a struggle.

 

My husband called the British Tranquilizer Project for me and himself, to give us hope and reassurance, and whoever he spoke to said, everyone heals and that they've been doing this for 20 years.  We needed to borrow a land line to call though, from the US and may get one so I can call for help more often as needed.

 

My therapist says everyone heals too, but I asked how many clients she's seen over the years for benzo wd, and she said about 50.  Before she told me she knew thousands who healed, but that was from being a part of a Yahoo Group she helped moderate for many years before it closed down and I question who she could know that everyone healed from that because it'd be like this forum.  I really want to know what is true.

 

I have such doubt because I am such a bad case of pain and SI brain issues.  If I need to medicate I want to know my reality.

 

Does anyone else have more sources?  I've been reading Bliss's, Bloom in Wellness Facebook page every day and she says everyone heals too.  I just worry how long I have to hang on for, and am filled with terror over that, since my every other day windows stopped.  I'd even be happy if the waves would lighten up.  I don't expect perfection.  I'd be happy with remaining fatigue or some pain if my mind felt happy and would allow me to want to live.  Does anyone else have this?

 

I've considered trying an AD for some help, but fear that too.

 

I used to be so full of life and happy.  What happened to me?  I live in the twilight zone and feel like a freak.  I do believe I will heal one day but fear being able to cope as long as it may take.

 

Do symptoms begin letting up even gradually by month 18 or so?  I'd be happy for any lift right now. 

 

Parker felt that Remeron helped her to heal.  How does everyone feel about ADs for assistance?  I've had poor success with them in the past and had that Genesight test done which shows me missing the metabolic pathway for  most TCAs even though I felt better on that tiny bit of Elavil 3 times per week, than any SSRIs and SNRIs.  I could only take others for less than 7 days before feeling pretty bad or having bladder issues.

 

Any thoughts?

 

Love to all and I'm glad to see that many of you are having nice windows,

Lisa

 

Lisa, have I read your signature correctly ? you are at 11 months out ?  If yes, then I think there is some healing to do. Here, our worst month have come at 15 months out.

 

THat said, you are in agony and losing 24 hour windows is horrid, I should know, my pattern just changed. Yours is worse, of course.

 

But, I don't understand why you doubt your therapist ? Is 50 not a  good number ? If she has had 50 cases until now, does that make her less competent ?

 

I am sure you will find comfort from English sources. I had heard of a buddy who did online consultations with Bliss. It might be expensive though. Or maybe Dr Jennifer ? Do you know  her ? She had protracted, she has been in great pain. http://benzowithdrawalhelp.com/

 

Is this what you had in mind ? If you want some comfort, c heck out Matt Samet's interview

I find it very soothing and vindicating.

 

You really should ask Mrs, she is like a human archive and knows all these things.

 

Lisa, I don't know, i would keep away from any more medications for the brain of any kind. at this point, it's just too delicate a balance you have reached, you would risk jeopardizing it all. That's how I see it, but we are all different.

 

YOu have been through a lot, I know. DOn't take rushed decisions, that is all I am saying. Consider all of your options, rushed decisions are what got us here to start with.

 

A big hug, hang in there and let us know how it goes.

 

 

[[Gr...]]

Lisa ... I cannot say anything to other drugs or supplements because I have never used any ...

 

My stuff does seem to be lightening up ... and when a new wave hits it is very intense for a while and then seems to flatten out after a few hours ... happened for me again this morning after a three day respite ... not a window, just a respite ...

 

And I seem to forget how intense things get between episodes and get tangled up in health fears for a while ...

 

Everything I have seen and read, everyone heals eventually if they stay with it ... and everyone seems to have a different process ...

 

And I have stopped listening to anyone I have come into contact with regarding this process ... since October I have settled into just being where I am and hanging out here on BB ... and this is a long, long haul ...

 

Sorry I can't be more "help" ... I can only encourage you to stay with it and you will come out the other side ...

 

 

 

Lisa, I have a hard time finding the words to comfort people in this crazy mess we find ourselves in.  Nova said it so well I would like to echo his words, my compassion.

 

Also, re taking other meds.  When I was in the straits of hell and almost went for "medication help," I found some posts by cupcake, or cindy, I can't remember, someone who helped a lot of people, and this woman had written that the only people, in her experience, who didn't recover for years and years, who went on to become protracted, were the ones who kept experimenting with different medications to feel better.  That had a significant effect on me, reading that.  It resonated, made sense, so that, like Nova, I'm hunkered down for the long haul, waiting it out.  I don't make medication decisions for other people, I wouldn't dare, but can give only my own experience.  I decided not to take the meds.  The dark place I was in went away in a window.  different symptoms, mental and physical, came back in other waves.  but for me, the rapid changing of symptoms was evidence that my body and brain were scrambling to get better, adjust to a body no longer on benzos.