12-24 months and up support group

[[le...]]

I got the capsules says take 2 a day, 5 mg per capsules. Did feel bit woozy after taking it so might take it late afternoon, evening. How long before started helping you? Just praying it works as can't go on line this!!!

[[La...]]

Leann I’ve never used CBD THC or anything like that. Sorry I have no knowledge of it but I’ve seen posts on here some good some bad. Just be careful and if you do it please go low and slow. I hope it helps you. Poor thing you’ve been having such a tough recovery.

Deanna yes I agree with you about the cough drops. Ricola has herbs! I wouldn’t be surprised if once you stop them that a couple days later you feel better. While we’re recovering EVERYTHING can be a culprit of revving up symptoms. It sucks! I recently had to change my deodorant to unscented natural arm n hammer. So far so good. Day 3 or 4 of using it.

I started watching Virgin River. Wow I really like it. Not stimulating at all and good story line with a small community sticking together. Leann is right that it’s rare to find that nowadays even in small towns. In the old days it was common! I miss those days. I was telling my 12 yr old daughter about having a house phone. When it rung everyone came running to answer it hoping it was for them 😂 and how you had to memorize everyone else number. Made your brain get used the way it’s supposed to. Kids played outside most of the day inventing games, riding bikes, jumping ropes etc. rarely saw a fat kid or a kid playing video games all day every day. We had encyclopedias and dictionary. Our brains got plenty of exercise every day. We spent many hours at the library…studying! If you was poor you’d go walking the neighborhood for junk on the street to take home to create something with it or build a clubhouse. Those were the best times!!! She couldn’t understand or appreciate none of that! All she knows is technology.

Today I’m having some pulling sensation again but it’s less intense. Fingers crossed that my long wave is going away! Thanks Deanna for wishing me well. You too Leann

Brother is getting out of the hospital today.

Hugs to all

[[De...]]

Leann I think I remember having to give it a week or two to see some results and I know I started low so if I didn't notice anything I started to updose.  I got the tincture and it tasted just awful!!!  The things we do when we are desperate!  I hope you get some good effects on it...

 

LadyDen those good old days you just described made me smile.  It was so easy to remain calm and collected back then.  All this interconnected technology overwhelms our brains and I'm sure contributes to the epidemic of anxiety issues!

 

Have a lovely Sunday my dears...I am a bit more settled today but still achy, tired and fearful of the next wave.  Trying to channel some positivity!!! 

[[le...]]

Glad your brother doing well Ladyden. The cbd doesn't contain any THC so is non addictive and no withdrawal. Don't worry alway go carefully. You can take up to 75 mg. This one is 5mg capsules says to take 2. Just been struggling so much recently get desperate for some relief and seems get good reviews. After about 5 days can normally tell if get adverse reaction. Reassured me Deanna had used it without problems.

[[La...]]

Deanna yes they make me smile too. The technology definitely has its pros and cons but in my opinion more cons for the youth. Hope you feel better soon sweetie. Hang in there. I know those waves are brutal. This will pass for us. We’re at a milestone so it’s expected. Remember the windows. That’s what I keep telling myself.

Leann that’s a good approach. I hope it helps you dear! Big hugs to you both.

I wonder where Becks went? And the others?

Happy Sunday to everyone.

“ Take a minute or two today to focus on ONE good thing.”

“ Ask yourself this question: how can I help myself today?”

“ If all you can do is breath, then just do that!”

 

[[Be...]]

LadyDen, I use Mitchum women's gel deodorant.  It has very little odor and doesn't stain and ruin your clothes. 

[[le...]]

Thanks Leann - just go low and slow...I ended up getting to 25mgs 3X day which is pretty high.  There are so many websites that guide you how to get started.

 

 

 

 

 

 

 

How long did you leave it befor you started upping the dose Deanna? Hoping it might help with sleep as well as that been pretty crappy recently, been awake since 4 am, got up sitting in our conservatory listening to birds singing, Only taken it 1 day so far so early days. I'm taking capsules does say they take longer to get round the body, but seem easier to monitor how much dose you are getting. Think was more community spirit years ago, but no web, no BB, would never have coped all this time without the support on here.

[[Be...]]

Hey Ladyden,

 

Yep I’ve had those symptoms.  They are mostly gone  (touch wood) & I can ride in a car & drive a car now.  Those symptoms will go for you - I know it doesn’t feel like it now but they will & you will be able to ride in a car & drive again - please believe that you will.  BWD has been super off for me. Right kid I’m on a wave. It was mostly physical but tonight crushing depression has hit me:  gotta keep going. Distracting as much as possible.  I hope your day is going ok xx

[[De...]]

Thanks Leann - just go low and slow...I ended up getting to 25mgs 3X day which is pretty high.  There are so many websites that guide you how to get started.

 

How long did you leave it befor you started upping the dose Deanna? Hoping it might help with sleep as well as that been pretty crappy recently, been awake since 4 am, got up sitting in our conservatory listening to birds singing, Only taken it 1 day so far so early days. I'm taking capsules does say they take longer to get round the body, but seem easier to monitor how much dose you are getting. Think was more community spirit years ago, but no web, no BB, would never have coped all this time without the support on here.

 

I can't remember now (thanks Benzo brain) but knowing how impatient I am I probably waited only a day or two before updosing.  I think I started off with a dose in the am and one in the pm.  I finally added one in the middle of the day, so I think I did like 9am, 5pm and then once before bedtime.  I can't remember now if there was a time to effect on the CBD, like a half-life.  I know it does have to build up a little in your system.

[[La...]]

LadyDen, I use Mitchum women's gel deodorant.  It has very little odor and doesn't stain and ruin your clothes.

Ok Becks thanks! I have arm n hammer unscented natural essentials. So far it’s not causing any problems. How are you doing

[[La...]]

Hey Ladyden,

 

Yep I’ve had those symptoms.  They are mostly gone  (touch wood) & I can ride in a car & drive a car now.  Those symptoms will go for you - I know it doesn’t feel like it now but they will & you will be able to ride in a car & drive again - please believe that you will.  BWD has been super off for me. Right kid I’m on a wave. It was mostly physical but tonight crushing depression has hit me:  gotta keep going. Distracting as much as possible.  I hope your day is going ok xx

Thanks Bess. Very helpful reply. I’m sure it will go away. I’m not worried about that. I was wondering how you were able to ride in the car during that time? When you had to what happened? Did you make it to your destination?

Sorry you’re depression is ramped up. I really hate that for you. Does it help to do something that makes you happy or laugh? Are you getting sunlight? Walking a bit?

Those helped me get through each day especially when I’m feeling sad. It’s hard to believe we’re going through this for so long. Other meds don’t do this to people for this long. Including street drugs. You’re right that distraction is a must! In my waves I dream of places I want to go when I’m healed. Things I will be doing again. I can’t wait 👍🏼🦋💐

[[De...]]

Hi All!!  As you know I am coming up on one year off.  Quite a milestone but thanks to a recent chest cold I am in a long wave and my nighttime fibro-flares are back.  I absolutely HATE them.  Isn't it funny that we all have that ONE symptom that instills FEAR into us.  UGHHHHH!!

 

Anyway I came upon this as it popped up on my facebook ads.  Funny how FB knows your interests so well, but this is a wearable device called Apollo Neuro which emits vibrations and is supposed to help you improve your resiliency to stress via activation of the parasympathetic NS.  I'm not advocating it yet as I just ordered it and I need to try it out for about a week and I'll report back.  I searched this site for previous experience and as best as I can see only Fluffer knew of it and used it.  I'm hoping that at my particular point of healing that it helps a bit.  It's very expensive but they'll take returns in 30 days if I don't feel it helps. 

 

https://apolloneuro.com/

[[La...]]

Deanna I hope it works! I’ll be waiting on the report. I’m excited for your milestone. Congrats!!!!!!! Early congrats!!!!! 🎉🎈🎊

Yes we all have one or two symptoms that hang on for dear life. Mine is this pulling sensation and boatiness. If it wasn’t for those two I’d be doing soooo much better. I might throw a party when they leave 😂

[[le...]]

Thanks Leann - just go low and slow...I ended up getting to 25mgs 3X day which is pretty high.  There are so many websites that guide you how to get started.

 

How long did you leave it befor you started upping the dose Deanna? Hoping it might help with sleep as well as that been pretty crappy recently, been awake since 4 am, got up sitting in our conservatory listening to birds singing, Only taken it 1 day so far so early days. I'm taking capsules does say they take longer to get round the body, but seem easier to monitor how much dose you are getting. Think was more community spirit years ago, but no web, no BB, would never have coped all this time without the support on here.

 

I can't remember now (thanks Benzo brain) but knowing how impatient I am I probably waited only a day or two before updosing.  I think I started off with a dose in the am and one in the pm.  I finally added one in the middle of the day, so I think I did like 9am, 5pm and then once before bedtime.  I can't remember now if there was a time to effect on the CBD, like a half-life.  I know it does have to build up a little in your system.

 

 

 

 

 

 

 

 

 

 

 

 

I'm like you low on patience. I've been taking them about 3 days I think now 1 in afternoon and 1 in the evening. Think I might add 1 in morning tomorrow see how get on. Don't want to go too high, think the capsules are slower acting as don't go straight into bloodstream. So far Ok so fingers crossed. Sorry about your cold. It's always difficult know whether to spend a lot on things that supposedly help. Fluffernutter seemed very knowledgable, I felt really sorry for her with some of the comments she got before leaving. Just looked up device you ordered at that price good you can return if doesn't work. Hope it helps.

 

[[Be...]]

Hey Ladyden,

 

Yep I’ve had those symptoms.  They are mostly gone  (touch wood) & I can ride in a car & drive a car now.  Those symptoms will go for you - I know it doesn’t feel like it now but they will & you will be able to ride in a car & drive again - please believe that you will.  BWD has been super off for me. Right kid I’m on a wave. It was mostly physical but tonight crushing depression has hit me:  gotta keep going. Distracting as much as possible.  I hope your day is going ok xx

Thanks Bess. Very helpful reply. I’m sure it will go away. I’m not worried about that. I was wondering how you were able to ride in the car during that time?

I have to drive as part of my job - in tolerance WD I had no idea what was wrong with me. I took little trips to build it up. Little little ones. Slowly building it up. If I needed to pull over to throw up, I did & then got back in,. I went slower when I was driving too. Drank a ton of water.

 

When you had to what happened?

Felt horrendous at first. I had to get back to work though as I don’t have any financial support from family (they live overseas) & am single. So it was just one of those things that I had absolutely no choice about.

 

Did you make it to your destination?

Not always.  But when I went back to work I had too.

 

Sorry you’re depression is ramped up. I really hate that for you. Does it help to do something that makes you happy or laugh? Yep it does. We are in lockdown where I Live so I’m limited but I’m watching comedies on a streaming service we have here..

 

Are you getting sunlight?

Yep lots of sunlight thanks.

 

Walking a bit?

Yep - walking a lot.

 

Those helped me get through each day especially when I’m feeling sad. It’s hard to believe we’re going through this for so long. Other meds don’t do this to people for this long. Including street drugs. You’re right that distraction is a must! In my waves I dream of places I want to go when I’m healed. Things I will be doing again. I can’t wait 👍🏼🦋💐

Where abouts is the first place you’re gonna go to when you’re healed? I think I’m going to go to Bali, not the touristy bits but the back out of the way bits. How are you going? I hope your day is going ok. Xx

[[le...]]

Need some virtually hugs, just feel I can't make any improvement or move forward. I feel I'm ruining my husband's life as well as so limited to what we can do. Wish I knew someone local going through same I could talk to, rather than just help line where just tell you it takes long time. Try explaining to friends, they think it's just depression, but makes me sound crazy when try to explain  the intrusive thoughts, I think I'm going crazy so god know what they would think. Sorry I'm miserable Martha today😩

[[De...]]

So sorry you are struggling Leann  :'(  I know this process is agonizingly protracted and I too feel like I've lost all my progress.  But when I consider the alternative that I would remain like this forever it is simply not an option I can wrap my head around.  We have to heal/improve/find a better quality of life.

 

I exercised today despite my concerns that it could make my symptoms worse bc I know it is better to move than to not move.  Exercise improves so many physiological systems, especially brain health.  Do you get regular aerobic exercise??

[[le...]]

I do yoga every day, and go for a walk. Did try exercise bike, but anything too vigorous seems make me worse. Getting rapid cycling symptoms again find really hard. Just hoping the CBD capsules will help, have increased to 3 a day, still low only 15 mg. Just others seem have odd period when the get some relief whereas I just seem stuck in Groundhog Day. First 8 months was tolerable, then gradually got  worse, think I could cope if symptoms were physical and easier to explain to people. Sorry just misery today

[[Up...]]

Well tomorrow is a phone appointment with my psychiatrist and my benzo wise psychologist.  I am almost 24 months and very symptomatic.  I go and do all I can and take care of what I have to and do fine doing it.  But I have so much pain and confusion and wake up with the surges of adrenaline and cortisol, barely a appetite and nauseous, nerve pain, vibrating  and tinnitus nothing is as severe as acute but all is too much.  My psych says I am the only person she has ever seen with such extreme sx.  Wants me to just reinstate and I may have to.  I don’t want to hear all the horror stories and med bashing.  I am almost 24 months off and barely functioning and have a child in hospital who needs me.  I will do what I have to to save my kid.  I don’t have more time with no support.  Nobody can say when I will get any better.  Nobody knows what could help.  But sitting here waiting for relief is not a option for me.  I need my life back.

[[le...]]

Good luck with  whatever you decide to do. GP refuses to give me zopiclone so re instating not an option. Hope things improve whatever path you take.

[[Be...]]

Well tomorrow is a phone appointment with my psychiatrist and my benzo wise psychologist.  I am almost 24 months and very symptomatic.  I go and do all I can and take care of what I have to and do fine doing it.  But I have so much pain and confusion and wake up with the surges of adrenaline and cortisol, barely a appetite and nauseous, nerve pain, vibrating  and tinnitus nothing is as severe as acute but all is too much.  My psych says I am the only person she has ever seen with such extreme sx.  Wants me to just reinstate and I may have to.  I don’t want to hear all the horror stories and med bashing.  I am almost 24 months off and barely functioning and have a child in hospital who needs me.  I will do what I have to to save my kid.  I don’t have more time with no support.  Nobody can say when I will get any better.  Nobody knows what could help.  But sitting here waiting for relief is not a option for me.  I need my life back.

 

I am so sorry to read you are struggling.  I hope you get some relief soon,  I’m also sorry to read the stress you are under.  Especially with your child in hospital.  I’m also sorry to read of the lack of support you have.  I know that this is like.  I hope in the midsts of all of this that you are being kind to yourself. That you are looking after yourself with hood nutritious food & having as many good thoughts about yourself, to yourself.  Which ever you decide to do - be good to yourself.

[[De...]]

I do yoga every day, and go for a walk. Did try exercise bike, but anything too vigorous seems make me worse. Getting rapid cycling symptoms again find really hard. Just hoping the CBD capsules will help, have increased to 3 a day, still low only 15 mg. Just others seem have odd period when the get some relief whereas I just seem stuck in Groundhog Day. First 8 months was tolerable, then gradually got  worse, think I could cope if symptoms were physical and easier to explain to people. Sorry just misery today

 

That's good Leann - yes we should exercise but not overdo.  The fact that you find overdoing makes it worse kind of supports that your symptoms are still WD related and you are just like the rest of us.  I have mostly physical symptoms, rarely mental but they impact me tremendously.  I look completely normal and ppl don't understand my issues either.  I've learned to just accept the bad days as they are and make the best of the good days without overdoing.  This hell has to end somehow and sometime.

[[Be...]]

We are I. Lockdown for another 4 weeks. It’s been almost 5 weeks already.  I run my own business & the lockdown is affecting it. I’m not eligible for government support as I went from being a probate company to a sole trader this year to cut down on admin costs..  trying to stay positive. Woke up at 3.30am with a sore neck & a sore soul. Trudging forward. Gave to keep going.  I’m lonely, oh so lonely. I’m single, love by myself, my family all live overseas & I don’t hear from them much & I have hardly any friends here.  BWD is wayyyyy harder with no support, isolation & loneliness.  I’m trying to stay positive & not fall victim to the gloom. Trying to still eat with a dwindling appetite.  I’m frightened of being in my apartment - the opposite to agoraphobia . It’s weird.  I’ve always been driven, made myself busy - this is tricky during lockdown. Nearly 18 months off - have to keep going. Have to keep putting one foot in front of the other. Have to be my own best friend. Give myself the support Thai get through this. BWD brings up oils wounds. Self esteem, self love. I’m determined to come through this. Learn it’s lessons & be all the better for it.

[[on...]]

Off 21 months.Insomnia is the worst issue. My sleep is super messed up.The sleep cycle keeps changing.Most nights 0-3 hours of sleep and the 3rd night about 5 hours.Lots of time spent home exhausted beyond belief

[[Be...]]

for leann.  It will be alright.  Where's LadyDen today?  Haven't seen her post.