12-24 months and up support group

[[De...]]

My unwanted guests are crashing my party yesterday and today!

 

Haven't had this nerve pain in my shoulder since May...I was doing pretty well now I have a knife sticking out of my back and radiating down my left arm.  The pain ramps up, peaks and slowly fades over about an hour, but this happens every three hours.  Had episodes like this several times before and cannot understand how the body can cycle pain like this.  It must be fluctuating neurotransmitters.

 

This time of year never good for me, as I miss the sun.  I'm thinking of buying one of those expensive sun lamps that emit UV rays like the sun to make vitamin D naturally.  I took a baby drop of Vitamin D a couple weeks ago and it revved me up!  How in the universe can we be that sensitive?

[[le...]]

I'm so sorry you are getting bad physical pain. I know virtually every supplement people recommend just revs me up. Just re read Ashton manual couldn't see anything about herbs, but maybe somewhere else,  she says anxiety should subside over a year! Think some of it needs updating a but GP's  over here just ignore it sadly, tell you CT will be just fine. GRrrhhh!!!!!

 

[[De...]]

I agree with you Leann, there is vastly more experience now in ppl who have come off benzos that there should be an accurate epidemiological database with all sorts of UPDATED information of the best way to get through WD.  I think if I never stopped drinking my camomile tea I may have been able to keep using it.  I just assumed alot of stuff I was experiencing was attributable to the camomile, but it may not have been, and now that I haven't used it since Oct 2020 my body is probably sensitive to it and will react if I try to re-introduce it.  Meanwhile it may have given me some relief.

[[le...]]

Maybe try it for a day or so?

As I  say I've been drinking the tea for years as had insomnia fir about 15 years. Anything I try gives me a reaction within a couple of days. Really difficult with supplements as everyone's reaction is different. Yes there def should be an updated version of Ashton, as she recommends switching to diazapam as easier to come off, but GP's wont't give it to you here. Think most peoples symptoms take  lot longer to ease than times she gives.

[[La...]]

My unwanted guests are crashing my party yesterday and today!

 

Haven't had this nerve pain in my shoulder since May...I was doing pretty well now I have a knife sticking out of my back and radiating down my left arm.  The pain ramps up, peaks and slowly fades over about an hour, but this happens every three hours.  Had episodes like this several times before and cannot understand how the body can cycle pain like this.  It must be fluctuating neurotransmitters.

 

This time of year never good for me, as I miss the sun.  I'm thinking of buying one of those expensive sun lamps that emit UV rays like the sun to make vitamin D naturally.  I took a baby drop of Vitamin D a couple weeks ago and it revved me up!  How in the universe can we be that sensitive?

Yes old symptoms cycle back for me as well since I’ve been in month 15. As you know I’ll be 17 months in 8 days. I have symptoms popping in and out all day even new ones pop in briefly. Same as you I’m like “what in the world!!!” I’m sure I’m quite vitamin d deficit seeing that I can’t go outside. It might be a good idea for me to get a lamp too. Matter of fact, I’m going to look it up and probably order one today. I can’t take supplements either. It’s strange the farther out the more sensitive. None of it makes sense. I’m going to start back putting one thing at a time in my diet. Going to try peanut butter, then, cabbage, etc to see how I do because we need to get our vitamins to heal from our food. I’m even going to try salmon. This is so crazy! And how do we know if a food raved us or it’s a coincidental wave?

[[La...]]

Yes I understand how you feel. Do you think the chamomile is causing you an issue. Dr Ashton put it on the no no list. Do you think you could try not to use any for a week or two and see if it makes a difference?

 

 

Those of you in the USA, this is to honor our veterans and heroes who bravely serve our country. We are thinking of you and your families. We are sending you our love. Most importantly WE THANK YOU!!!,

🇺🇸🇺🇸🇺🇸❤️🌟❤️🌟🇺🇸🇺🇸🇺🇸

[/quote

 

 

 

 

 

 

 

No J've drunk chamomile tea for years because of insomnia. I did try stopping it but made no difference and made sleep lot worse. I know it affects some people. Think Ashton has virtually banned everything! I get reaction very quickly if anything affecting me. Do you have 2 minute silence over there? We have it at 11am, it's my son's 40th today so always know when It's rememberance day. We've got knitted poppies all over trees on our village green looks lovely.

That does sound lovely! I wish I could see it.

Wherever there’s a ceremony for the veterans yes they do silence for the ones who passed away.

That’s good that it works for you. I know it revs up many people because it does act on the same receptors as benzos. Maybe that’s why you feel worse after trying to stop. It makes sense. Kind of like WD but on a smaller scale. I’m not telling you what to do, but, perhaps you might want to reconsider not drinking chamomile. Just allow the time to pass to get over not having it in your system even though it’s worse. It will only be for a short timeframe. Then see if you improve from you being stuck in your healing. It’s just my opinion that it may be why you feel so bad everyday this far out. It’s your choice, of course. It just stuck out to me as a culprit. I’d really like to see you get better.

Big hugs sweetie

[[De...]]

On day 3 of a nasty wave of pain and now I feel hit by a truck - the all too common benzo flu again.  No fever but boy I feel like I have the flu indeed.  Oh why why why out of the blue such a bad wave.  Just like acute  :'(  I can feel the neurotransmitters surging and shifting.  One minute I feel like crying my eyes out, next minute not so much.  I eat and I'm hungry 1/2 hour later.  The pain comes and goes just like the emotions.  Like a battle going on in my adrenal/nervous system. 

 

And LadyD it's so funny you mentioned a mini withdrawal from camomile...I was thinking the same thing, that if I could just get over the possible wave from drinking it again maybe it would be good to have the camo on board and I could just keep drinking it.  It has so many health benefits!!  Just stuck with decaf green tea during the day and bland Rooibus tea at night.  Oh how I miss my old routines. 

[[La...]]

Rory Deanna that you’re in a bad wave. Today I am also. It sucks. Every hour or two different symptoms. Does this mean we are rapid cycling? I’ve yet to figure out how to tell. Do you know?

You know what, Deanna, these waves must be doing something serious towards our healing. Why else would we feel so bad and they’re so intense? I keep thinking about Parker’s post of the description of waves and windows. Right now I’m feeling the pulling sensation again, mild tight belly, weird head pressure, increased boatiness, flu like, increased ringing ears, tummy rolling with sudden urge to go to the bathroom and muscle tightness. For a few minutes when this wave started, I felt the right side of my face become numb around my jaw. Never felt this before. When I get big waves like this, I notice new symptoms pop in and out but they’re brief. Do you have this too?

[[De...]]

LadyDen, I have a few odd new symptoms yes, like a strange sensation in my foot, or an eyeball that feels like it has sandpaper in it.  My gut feels like there is some shifting too.  Today things shifted so often I wondered if these are the rapid cycling ppl talk about.  I suppose it could be.  I am sorry you are struggling too.  I'm thinking that this time of year is tough too with less daylight.

 

Oh sometimes I can't believe we are in this nightmare...

[[Be...]]

If you start eating peanut butter again, get the natural pb.  Hydrogenated pb causes me stomach cramps.

[[le...]]

Wish you all well for the future hope you all continue improving. After 32 months with zero improvement given up on fighting this anymore. Everyone is different some of us need extra help to eventually fully recover, I'm just one of the unlucky ones.

[[Be...]]

Wish you all well for the future hope you all continue improving. After 32 months with zero improvement given up on fighting this anymore. Everyone is different some of us need extra help to eventually fully recover, I'm just one of the unlucky ones.

 

I totally get where you are coming from but please don’t give up hope on healing.  It is beyond hard what we go through but you can do this - it will be ok. Know that you are not alone in this.

[[le...]]

Thank you. GP not wanting to know was the final straw. I've put in official complaint to NHS about one who made me CT. Not really eating so might loose bit weight😏

[[La...]]

Deanna  yes I think we both are rapid cycling. I’ve searched the archives for an explainable way of telling if that’s what is happening. I didn’t get much information as I thought I would. So I asked the administrator. She did help me to find a bit more. So from what I’ve gathered, rapid cycling is symptoms showing up in waves varying at different intensity levels every hour or so throughout the day. New symptoms randomly pop in but your “ normal” symptoms increase then all of a sudden you feel a shift ( lifting) in the symptoms. Starting a window that may be in various degrees as well. Afterwards you start the cycle over. This happens rapidly over and over. Hence the name rapid cycling. Even in the same hour, people can get two waves of feeling bad. I’ve read this is a good thing. It’s like fine tuning. I’ve read most healed after rapid or their baseline improved greatly. 

 

Becks thank you for the peanut butter tip. I’ll definitely try it. I’m going to start with a little and see how it goes.

 

Leann you can’t give up now. You’ve come so far. If you go back on your medication you’ll undo all of this time you put in and be wayyyyy worse than you are now. I agree with Bess. Hang in there.

Bess that’s sweet of you to be an encouragement. I hope today is better for you.

 

[[De...]]

Thanks LadyDen, that is very encouraging and very good of you to reach out and get more info from the Admins....What you explained describes what I'm feeling quite well.  Yesterday morning around 4am I was half asleep but noticed I had new nerve zapping in all the familiar places I usually have intense nerve pain.  Like my body was playing the piano on my affected nerves.  Some new places I'd never had pain before too.  That lasted about 30 minutes then faded and I fell asleep again for a while.  I woke up and wasn't even sure I really experienced it but it wasn't a dream, I know that for sure.

 

My daughter came to visit which was a nice distraction for the WE.  I woke up today feeling achy in all the usual places (instead of intense pain) and somehow I feel something has indeed shifted.  My sleep cycle has also shifted, getting up every day now like 4:30 or 5am, but that's 7 hours and I'm happy with it.  Watched a couple movies on Netflix and had a decent WE in retrospect despite all the Sx.

 

I am so very grateful for all of you on this thread and all the others.  I would be a basket case without you 

 

I wish all a good day of healing.

[[La...]]

Glad your weekend was good in spite of your symptoms. Rapid cycling definitely describes us Deanna. You and I are having the same experience about the same timeframe. At least we have each other to relate to. As well as our friends on this forum who always show such love. I’m soooooo grateful for this forum.

My weekend was the best I’ve had in nearly 2 months. I pretty much had a 2 day window. Those windows were at varying degrees but so much better than the ones I’ve had the past month. This morning I’m having my usual dread/wave. I’m hoping I’m turning a corner. I really need to get some sunlight soon. Thanksgiving is coming up so I’m hoping to be in a nice window to enjoy it.

Hope today will be good for all of us. And may we all turn nice corners.

Hugs and love to everyone 

[[le...]]

Decided reinstating on zop not answer, making me feel more teary so stopped after 3 days. Feeling pretty low as was reading on another benzo information site, if you did CT could have protracted symptoms for several years. Basically s* d all I can do. Just feeling very disheartened when things never improve, just seem get the horrible waves then back to normal horrible. They had a podcast from lady who also experienced irrational fears and almost paranoia, so least know haven't lost my mind. It's the feeling you are completely disconnected from your brain, which makes it so hard to distract. Least I only took them for 3 days so shouldn't make much difference.

[[De...]]

Glad your weekend was good in spite of your symptoms. Rapid cycling definitely describes us Deanna. You and I are having the same experience about the same timeframe. At least we have each other to relate to. As well as our friends on this forum who always show such love. I’m soooooo grateful for this forum.

My weekend was the best I’ve had in nearly 2 months. I pretty much had a 2 day window. Those windows were at varying degrees but so much better than the ones I’ve had the past month. This morning I’m having my usual dread/wave. I’m hoping I’m turning a corner. I really need to get some sunlight soon. Thanksgiving is coming up so I’m hoping to be in a nice window to enjoy it.

Hope today will be good for all of us. And may we all turn nice corners.

Hugs and love to everyone 

 

LadyDen I am so happy for you that you are finally in a window!!  Enjoy Enjoy Enjoy!!! 

[[De...]]

Decided reinstating on zop not answer, making me feel more teary so stopped after 3 days. Feeling pretty low as was reading on another benzo information site, if you did CT could have protracted symptoms for several years. Basically s* d all I can do. Just feeling very disheartened when things never improve, just seem get the horrible waves then back to normal horrible. They had a podcast from lady who also experienced irrational fears and almost paranoia, so least know haven't lost my mind. It's the feeling you are completely disconnected from your brain, which makes it so hard to distract. Least I only took them for 3 days so shouldn't make much difference.

 

Leann I think you made a wise decision.  The drugs only screw us up.  I'm so sorry it is taking such a long time for you - we know all too well how demoralizing this experience is.  I feel like my life is wasting away while I heal.  We'll never get those years back unfortunately, but when we do feel better we will move forward and not look back.

[[le...]]

Just got really low after GP refusing to help and questioning whether it was even withdrawal. Zop don't help anxiety anyway just sleep, and that OK at moment. Just everyone else seems to get some variation in symptoms whereas I never improve. Start questioning whether it's just me and my life now. I hate winter always get bit low this time of year and getting bombarded with Christmas advertising here driving me nuts😱

[[Be...]]

Ladyden that’s awesome you had a window - wahoooooo - being on more of them things I say! Xx

[[De...]]

Just got really low after GP refusing to help and questioning whether it was even withdrawal. Zop don't help anxiety anyway just sleep, and that OK at moment. Just everyone else seems to get some variation in symptoms whereas I never improve. Start questioning whether it's just me and my life now. I hate winter always get bit low this time of year and getting bombarded with Christmas advertising here driving me nuts😱

 

I can really relate to the feelings about this time of year.  I've always felt more energetic during the summer when we get more sun.  I hate the dark and cold, so I know that is part of who I am.  Going through this experience we need to really dig deep into whatever fortitude we have left to see past that .  I use a lightbox religiously EVERY day.  I do think it helps some.  Tried to supplement with Vit D but that makes me feel worse.  And I know I'm in the minority but I just don't LOVE Christmas like everyone else does.  Makes me feel like an outcast.  I used to be into it when my daughter was little, but I have always considered it too much work and a lot of wastefulness when ppl give/receive gifts that others really don't like, then I feel like I didn't meet expectations, etc etc and I feel relieved when they are over.  I wish I could feel differently, but I don't think my parents were that into it either and so they were ho hum about - no endearing childhood memories.  So that's just me, and not the withdrawal, so I know I have to just get through the dark days of winter.  But I'm trying to be grateful each day for something and that helps with positivity overall.

 

I was exhausted yesterday from this nasty wave, took a tylenol and I think it helped.  I awoke a little better today, but going to take it easy. 

 

Be kind to yourself - be your own best friend and only you know what you are going through.  So you are the best one to comfort yourself. 

 

 

[[le...]]

So glad you said that, people think I'm misery coz I don't like Christmas, my husband doesn't like it either. Like you I made fuss when my son was little, but when you don't have any youngish children in family it's like any other day. They start getting stuff in shops in October here, all about spending money. I'm not particularly religious, but feel people forgotten what it's meant be about. I've done catering for about last 27 years just had enough of it. Think zop was a big mistake, I know people told me, just feel really miserable. If I didn't think they'd pump me full of meds would go to psych ward. Wish I could be put to sleep and wake up normal. When I dream I'm a normal person!

[[La...]]

Good morning everyone! Well atleast it’s early morning here on the east coast USA. Lol I’m sorry to read that you’re struggling Leann. I agree with Deanna that it was wise to leave the zop alone. It’s the same as a benzo. All that is accomplishing is making things worse. A reinstate is a reinstate. I don’t want to sound like I’m bashing you when I say this but Leann you know that taking more pills or supplements isn’t the answer. In the past, you’ve done this a few times. Each time is a disruption of your healing and may be the reason that it’s not as good as it could be. I know you are miserable and just trying to help yourself feel better. But anytime people are going through this they must count the cost of putting things in the body with a damaged sensitive CNS. I think if you can gather all your strength and just let your brain heal without interference, you will start to feel better. I’ve read about this on the older posts. Some of the BBs just left everything alone then began to heal. Some even healed quickly. Not saying this will be the case for you but IMO I think it’s worth a shot. It certainly couldn’t hurt. But whatever you decide, sweetie, we are here for you.

 

Bess thank you so much dear! I needed those 2 days so bad. Grateful for them is putting it lightly! I wanted to do cartwheels Lol but I knew better.  I’ve been wondering how you are doing? Please give me an update. Are you getting ready for thanksgiving?

 

Deanna sorry you had a nasty wave. I hope it’s over now. It’s ok that you don’t like Xmas. It’s not for everyone. There’s a thing called winter blues that some people get. I looked into getting a light box. I think I’m going to order one. I know my Vit D is low. I’ve always loved Xmas. I did have fond memories of it growing up and as an adult. This thanksgiving and Xmas will be a little rough on me because I’m alone. I’ve always spent them with my husband ( my ex husband now). We used to have big family all together but now everyone is so split apart doing their own thing. I just have to get used to the newness of it. I still plan on making it be the best it can under the circumstances. I’m going to think of something fun and new to do as a tradition to help with the awkwardness of it. I really love the decorations and music of the season. I’m sorry to hear that yours wasn’t very good growing up. If you were anywhere near me, I’d invite you over and we’d have a blast! Matter of fact, I’d invite all of you.

 

Garden I haven’t seen you lately. I hope you’re ok. Please let me know how you are. Sending you hugs sweetie.

 

Becks did you get some sleep last night and was warm? Did you buy a heater? Wishing you a better day today. Nice and cozy warm.

[[Ga...]]

Hello to all from GG here on the East Coast where Fall is quickly being replaced by sights and sounds of Deck the Halls with Boughs of Holly......FaLalLaLaLaFalLa........!  Most of the stores now have leftover Halloween decorations scattered about with Tom Turkeys fighting not to be overshadowed by Christmas mistletoe and holly.  Growing up we had a tree go up a week before Christmas and taken down the day after New Years.  My husband’s father and mother put the tree and other decorations up Christmas Eve when he and his sister went to sleep dreaming of sugar plums.  He has fond memories of coming down the steps Christmas morning to a magical scene.  Aaahhhhh, the good old days.

 

I have been sitting in a nice window for a week or so, with sore ears and a slight headache popping in and out, but not enough to prevent me from getting in the mood for the holidays.  Thank goodness for online shopping as I am still hesitant to visit any large shopping centers.  Trying to pace myself so as to be able to enjoy Thanksgiving before the real madness begins.  I have scheduled my Pfizer booster shot for the Monday after Thanksgiving, so as not to ruin that holiday, and give me time to recover before Christmas; I had a pretty bad reaction to the vaccine ....ill for at least five days with the first and about eight days with the second.  I did get both shots while in a wave so now that I am much further out, I am praying that I have a minor reaction.....or none at all.  I did fine with the flu shot!

 

It sounds as if we are all in different stages of recovery, some in windows, others in waves, and others somewhere in between.  The only thing constant in BWD is that none of us know the why, when or what.  How wonderful that we are here for each other through thick and thin.  Can you imagine going through this horror story outside of Benzo Buddies?  I feel for those that never come to this forum....not everyone knows about google!

 

Sending my very best and warmest wishes to each of you for continued healing.....we are healing even when we don’t feel like we are!!!!

 

Hugs,

 

GG