~~The Bedridden Club~~

[[ho...]]

Hi Marie- I went pretty slow but tapered my AD at the same time and have a kindled history very bad tolerance and very sick when I started. My story is all over the place with cts and such. I hit a crash once my taper got over 11% and under about 2.5mg of v equivalent. I slowed to 2% first month after the crash then held 4 weeks and then started cutting two weeks ago at 2%. I decided two days ago to hold again because even the 2% wasn’t going well. I don’t ever feel like holds help me but I am not sure what to do at this point. I seem to be reacting to everything I eat. I can feel ok and then I eat and have have burning pain after with anxiety. I only eat Whole Foods but it seems the carbs maybe a problem but with hypoglycemia I can’t do low carb. Hypoglycemia is something I have dealt with my since 18 but it usually comes on from not eating enough. I am eating quite a bit and just getting sicker. Thank you for the prayers sorry for your wave. I will type more tomorrow. Trying to get to sleep early tonight.

 

Hi Fruity-

Had a wave day, sorry I am just now getting back to you.  I tried earlier.  I logged on and then my daughter came by and after she left, my oldest son called. 

 

Anyway.  I read over carefully your reply and looked at your signature too.  You mention being kindled, and also weaning the AD, plus your crash….and now you are at a low dose, so there is a lot going on.  No wonder you aren’t feeling well.  Just anyone of those could cause a problem on it’s own, and you have a combination of things going on.  Very wise of you to hold again.  Personally I am a believer in the holds, but that is only because I have had good experiences myself.  Obviously other’s have different view points and good arguments as well.  From what I have read, for some it has taken a long time for the holds to produce results.  Especially for those who are in a very bad way.  For me, a month was wonderful.  I felt like a different person.  But I wasn’t in your position.  I remember reading one lady sharing, that it took her 3 months before she felt any better and then one day she woke up and everything just felt better.  So you may just have to hold for a while…..your CNS may just really be on fire right now and needs some rest.

 

Are you taking a probiotic at all?  I know how important gut health can be and we have a bunch of gaba receptor’s in our gut as well.  I notice a big difference over all when I take my probiotic vs if I don’t.  I know so many issues relate to gut health, not just benzo w/d, but so many other things too. 

 

Have you tried a Vegas nerve massage?  I do those myself, but if my partner was better at massage I would ask him to do it on me.  My youngest is really good with massage, but because of where it runs, it really isn’t appropriate to have him do it.  But maybe your husband could do it for you.  I think it really helps, along with “belly breathing” (like babies breathe).    Just trying to help you with some of the things I found when I was in my worst shape and they helped me.

 

Also if this isn’t to personal…..why are you on Lithium instead of Valium?  I notice you say “equivalent”.  Is it possible the lithium is making you feel toxic?  Just curious…..?  I don’t know much about lithium.

 

 

Marie

[[ho...]]

Morning everyone. When I’m sitting up I try to do short exercises in my arms and legs to regain strength. Laying in bed for awhile makes us lose muscle tone. When I get to the point that I can be upright for longer timespans , I want to be as strong as I can. Love to you all. Try to keep your strength as much as you can. Also YouTube has chair yoga for elderly or disabled that can be done while sitting or laying down. It’s done with fun upbeat songs. I think the instructor is names Sherry.

 

Good Evening 

 

I am just now making it on.

 

Smart to keep those muscles strong.  If we don’t use it, we lose it.  I try and stretch everyday and also try and do some yoga too.  I have weight bands, but I am going to order a weight set (canceling my gym membership, because I never use it, and I am wasting money) and start doing the same.  I have a indoor professional bike and I so bad want to get on it……but I just don’t have the motivation or feel good enough.  It’s all I can do to walk the dog’s, or myself :laugh:   I am going to slow down my wean, drop my % to try and get my symptoms better under control.  This isn’t working out right now.

 

YouTube has all kinds of good stuff…..you can travel the world, fix your car, learn how do fix your dryer (I did that one) AND DO 🧘‍♂️, and so much more.  I’m glad we have these options while weaning off benzo’s or being in recovery 

 

Ok…see you over where the smarty pants hang out…..

 

Marie

[[Fr...]]

Hi Marie- I went pretty slow but tapered my AD at the same time and have a kindled history very bad tolerance and very sick when I started. My story is all over the place with cts and such. I hit a crash once my taper got over 11% and under about 2.5mg of v equivalent. I slowed to 2% first month after the crash then held 4 weeks and then started cutting two weeks ago at 2%. I decided two days ago to hold again because even the 2% wasn’t going well. I don’t ever feel like holds help me but I am not sure what to do at this point. I seem to be reacting to everything I eat. I can feel ok and then I eat and have have burning pain after with anxiety. I only eat Whole Foods but it seems the carbs maybe a problem but with hypoglycemia I can’t do low carb. Hypoglycemia is something I have dealt with my since 18 but it usually comes on from not eating enough. I am eating quite a bit and just getting sicker. Thank you for the prayers sorry for your wave. I will type more tomorrow. Trying to get to sleep early tonight.

 

Hi Fruity-

Had a wave day, sorry I am just now getting back to you.  I tried earlier.  I logged on and then my daughter came by and after she left, my oldest son called. 

 

Anyway.  I read over carefully your reply and looked at your signature too.  You mention being kindled, and also weaning the AD, plus your crash….and now you are at a low dose, so there is a lot going on.  No wonder you aren’t feeling well.  Just anyone of those could cause a problem on it’s own, and you have a combination of things going on.  Very wise of you to hold again.  Personally I am a believer in the holds, but that is only because I have had good experiences myself.  Obviously other’s have different view points and good arguments as well.  From what I have read, for some it has taken a long time for the holds to produce results.  Especially for those who are in a very bad way.  For me, a month was wonderful.  I felt like a different person.  But I wasn’t in your position.  I remember reading one lady sharing, that it took her 3 months before she felt any better and then one day she woke up and everything just felt better.  So you may just have to hold for a while…..your CNS may just really be on fire right now and needs some rest.

 

Are you taking a probiotic at all?  I know how important gut health can be and we have a bunch of gaba receptor’s in our gut as well.  I notice a big difference over all when I take my probiotic vs if I don’t.  I know so many issues relate to gut health, not just benzo w/d, but so many other things too. 

 

Have you tried a Vegas nerve massage?  I do those myself, but if my partner was better at massage I would ask him to do it on me.  My youngest is really good with massage, but because of where it runs, it really isn’t appropriate to have him do it.  But maybe your husband could do it for you.  I think it really helps, along with “belly breathing” (like babies breathe).    Just trying to help you with some of the things I found when I was in my worst shape and they helped me.

 

Also if this isn’t to personal…..why are you on Lithium instead of Valium?  I notice you say “equivalent”.  Is it possible the lithium is making you feel toxic?  Just curious…..?  I don’t know much about lithium.

 

 

Marie

 

Hi Marie-

Thank you for your kind words. Yesterday ended up being very tolerable and today I am back in it. Tolerable meaning not crying in pain all day but still in bed and able to watch tv. Perhaps holding longer will help i just have never had it really help me but I am not sure what else to do. I worry that I am to bad to get stable on such a low dose. I tried to cross to valium and it didn’t go well. I got one of those genesight tests and it said I was an ultra rapid metabolizer. Librium has worked fine up until this point. I just speak in Valium equivalents because no one knows Librium. Sometimes I think I am low and bed bound I should just keep going and get off but then I know I don’t want to push myself in an already messed up place crashed and bed bound 23 hours a day. These thoughts just loop over and over about what to do. Hope your day is better today.

 

Oh also I don’t know much about vagus nerve massage. I can try and look into later today when my brain is better.

[[La...]]

Yes Fruity I used to sleep solid but since my setback a month ago I wake several times at night. I’m able to go back to sleep in a decent time afterwards. This ( waking several times) definitely happens more often if I go to bed with stressful things on my mind. It’s common.

Hugs Marie. I see you are exercising and pushing yourself a bit. That’s great. I wish I could do that but physically I can’t. I just do what I can when I can and try again the next day. Driving again would be a dream for me. I know I’ll eventually get there. My main symptoms are vestibular ones. Boaty, balance issues, intolerance to standing/walking, intolerance to sit up for longer than a few minutes, head pressure and magnet pulling sensation. All of those have gotten better gradually so far but still debilitating. I’m going to see if I can sit up to watch my saints play today at least for a few minutes. All we can do is just keep trying until our bodies allow us to function normal.

I really miss going outside  :'(

[[Fr...]]

Yes Fruity I used to sleep solid but since my setback a month ago I wake several times at night. I’m able to go back to sleep in a decent time afterwards. This ( waking several times) definitely happens more often if I go to bed with stressful things on my mind. It’s common.

Hugs Marie. I see you are exercising and pushing yourself a bit. That’s great. I wish I could do that but physically I can’t. I just do what I can when I can and try again the next day. Driving again would be a dream for me. I know I’ll eventually get there. My main symptoms are vestibular ones. Boaty, balance issues, intolerance to standing/walking, intolerance to sit up for longer than a few minutes, head pressure and magnet pulling sensation. All of those have gotten better gradually so far but still debilitating. I’m going to see if I can sit up to watch my saints play today at least for a few minutes. All we can do is just keep trying until our bodies allow us to function normal.

I really miss going outside  :'(

 

Sorry you are struggling my symptoms seem so similar to yours. Intolerance to standing or even sitting for more than a few minutes. I have that extreme pulling down sensation as well. It brings me comfort to know I am not alone Lady Den. Does watching tv overstimulate you?

 

It’s weird I had a free consult with Dr Britz from psych med no more from Instagram and she said that Librium was a strange benzo to be on that it is more like Ambien but I didn’t know her reasoning for it. Wonder if this is why our symptoms are similar?

[[La...]]

No tv watching hasn’t been overstimulation for me. I’m grateful because it’s served as an often used distraction for these 16 months. Matter of fact I’m watching the Saints/Falcons game right now 😂

Yes I think the Librium is very similar as Ambien. That explains a lot. Have you tried looking up the components?

I’m also glad that someone has the same symptoms as me. But I’m not glad that we’re going through this. These symptoms are so debilitating. But I’ve gotten better so I know it will go away. In the meantime I’m doing what I can to keep up my strength. Hang in there Fruity. Try not to let it get you down. It’s upsetting but don’t live in that upset.

[[Fr...]]

Glad your able to enjoy the game. Seems most of your symptoms are physical then? Are you watching the game laying down? Would love to where more about your background. We’re you better and more able to function and now back bed bound? I am still not off and struggle daily with holding or pushing through or maybe resuming a very slow 2% taper. I do believe you heal while taper but not sure if I should just get off. I do see people that are very symptomatic even they jump continue to have problems after I held four weeks before and perhaps just need longer time. A lot say four weeks didn’t make a difference. But then I am like will injust be thrown back into this when I taper again? I don’t want to delay the inevitable. My looping thoughts are showing today.

[[La...]]

Fruity. Yes most of my symptoms are physical. I watched part of the game so far sitting up and now laying down watching. It’s almost over. We’re losing    Mods don’t get me but our butts are being spanked like a bad kid stealing candy in a store! Even more sad is that it’s on our own turf! OhhhhhLawddddd please !!! Lol 😂

When I tapered down to 4mg I was hit with a severe sudden seizure like episode with severe spinning and unable to control my body for a few seconds. Immediately afterwards I was left being boaty and have been every since. It took me 10 months to gradually improve to the point I could be upright for most of the day, ride in a car, do light chores, go for short walks and sit up to watch tv or eat at a table with my family. Even paid for vestibular exercises at my home by a specialist. I was in heaven and thought I was home free. That was the end of March. The beginning of April my new granddaughter was born. I was able to ride in the car to go meet her a few times staying at their house for 2-3 hours at a time. I was careful to monitor myself. I’d go home and rest most of the day afterwards. I was making great progress. First week of June right before I’m scheduled to move into my new apartment, I was slammed backwards back in the bed most of the day. Stuck again. So I did everything I could to recondition myself enough to be able to ride in the car. My friends here on BB gave me great support and suggestions. It took me 2 months ( August) to be able to ride in the car to get to my new place. Right on time for school starting back. All this going on while my husband left me. So I’m alone with a kid in this condition. I continued to make progress until first of last month when I’m slammed again with a seizure like severe spinning episode. This one brought a shift with my waves/windows pattern as well as morning dread and night waves. I was going for walks, cooking, started back with my artwork, playing cards, eating every meal at my table, sitting up watching tv, etc. So, now I’m gradually waiting again to get back upright. It’s been a little over a month now. I’ve made some progress but hopefully I’ll be well enough to eat my first meal at the table again on thanksgiving with my family.

As far as you tapering, I strongly feel you should continue to taper reducing as you tolerate the drops. At the end of my taper my doses were paradoxical. I felt like crap every time I took it. I wanted off so bad but knew better so I just touched it out until I had a crumb then jumped on Father’s Day last year. I would hate to see you suffer more by CT the rest of your medication. After all, a CT is a CT. Even zero is a reduction. You hold for up to 4 weeks then reduce. It won’t do anything but make you prolong the inevitable by holding too long. This is MY opinion only! You do what you decide to do. But you asked my thoughts. I’m sharing my experience. When I held for more than 3 weeks it made things worse for me because my brain took it as “ oh this is the dose we are staying on forever?” I gave myself a 4 week maximum hold only. That’s was done only once when I was intensely sick. I did it to ensure I’d get some sleep and allow my brain a little time to settle. I made a rule to never go up but I was allowed to hold. I stuck to those rules and NEVER updosed no matter how bad I felt. To me updose makes things worse because you’re exposing the brain to unstable doses while it’s in an injured state. Plus it erases the reduction you made previously. I’m also that sometimes people have to do what they need to do to help themselves stabilize. So I’m not throwing stones at long holds or updosing. Just saying for me, the sooner I was off the better. Updosing meant taking longer to finish. I didn’t want to send my brain mixed signals. It knew I was reducing. Coming off and it got mad! I don’t regret getting off. I wish I would have years sooner. I can thank the idiot doctors who updosed me to Ambien CR ( releases twice!). I was put on the highest dose for a man. I’m a female. Even the FDA put out instructions for doctors to lower the female patient doses by half. Those pieces of S*** doctors upped mine knowing the dangers. I’m blessed that I’m alive. My soon to be ex husband told me I quit breathing, choked in my sleep, severe night terrors that he probably thought I was having heart attack etc Absolutely terrifying! I’ve even gone for a routine doctor visit while tapering. They took my vitals and called an ambulance because my heart was beating wayyyyy too fast and wildly. It was in danger of stopping because it can’t sustain that fast rate for too long. So yes I suggest you go ahead and taper off according to the taper plan your on. Many BBs hit a wall or two during taper. It happened to me once as I said. It’s common.

[[Fr...]]

Thank you for that. It sounds like you have had a hell of a time. I am so sorry to hear of your sezuire like episodes. It’s so scary what these meds can do. I will not updose as when I took a rescue dose it was paradoxical. I was tapering 11% and then tried to slow didn’t work and the rescue dose it stimulated me and i totally crashed been bed bound since Aug 17th. I just feel so bad and wonder how I can continue on but holding doesn’t really bring any relief. So many have said I didn’t hold long enough to stabilize but when I did the rescue dose it was paradoxical so I don’t know if stabilizing is ever going to happen. Sometimes I feel that I am worse holding and that maybe I should five just kept going  at 10% but at this point tapering is causing so much adrenaline and heart racing bad pots and very poor sleep.

 

Sounds like by your doctor office experience you had pots too. Has that cleared up?

[[La...]]

Fruity I was never diagnosed or told it was POTS but it definitely was a result of tapering off my Ambien. I wasn’t on any other medication. Dr couldn’t deny it. My brain was overreacting due to reducing my dose. Scary times. I’m no longer having heart racing issues like that. Every now and then I’ll get mild adrenal surges that make my heart race for a short while. Those are very uncomfortable when they happen.

Wow you’ve been bed bound since August. I’ve got you beat lol I’m 2 years like this.

Do you mind if I give you a little advise on your taper? I’m NOT telling you what to do. It’s your body. It’s your decision. But, I think you could try smaller reductions. Like 5% instead of 10. You might not stabilize as you said so you might as well just reduce. Many BBs hit a wall. Sometimes more than once. I know I sure did one time. I held for 4 weeks but it didn’t matter much. So I just reduced lesser amount to get over the wall. Anyway, it’s something I thought might help you. The key is to reduce as bearable as you can tolerate because the symptoms are inevitable. I hope I’m not breaking any rules by giving this insight. If I am , it’s not intentional. I’m only trying to help you Fruity through a tough spot. I know when I was in this situation other BBs helped me by giving this exact same advice. Even Dr Ashton said tapering can be slowed down as needed. This isn’t a race. It’s an unpleasant journey on a path to healthier well being. I think it is very brave of any of us to take on such a tedious process as this. That in itself should give us an idea of how we are stronger than we realize. I had to first embrace that fact…I’m not weak, I’m injured and I have got to be my own advocate to help myself. Once I did that, Fruity, my strength burst through so strong. I let go of the fear of what ifs. The fear of I might fail. The fear of unknowns. This helped me to keep reducing. And every time I’d get scared on the night I was supposed to reduce, I would speak my strength out loud telling myself this is no big deal to cut such a small amount. And sure enough it proved to not be so bad. Oh the lies those benzos tell us! I’d lay there after reducing so paradoxical and think “ oh my goodness what did I just do! I’ll never get to sleep.” Absolutely not true!!! I’d do my sleep routine while in a big wave. I started focusing on naming things in alphabetical order( like flowers, usa states or birds etc) to ignore the fears and next thing I know I’d be asleep. Surprisingly many times I’d feel better after reducing.

Well, I hope I didn’t lose you in all that but I just wanted to share what helped me. I’m cheering you on. Don’t give up. Don’t give in. I believe in you that you can do this. Remember to pamper yourself each day. Hugs 🤗

[[Fr...]]

Thank you for your words. Very down today. I will keep pressing on.

 

Lady Den you have been bed bound for two years? I am so sorry to heart that. It criminal what these meds can do. I have been completely bed bound since August like 23 hours a day. Before that semi bed bound my whole taper spending most of the day in bed until five then maybe do a short outing on some days in the evening so I understand. It’s such a long grueling process I have been doing this five years with different levels of bed boundness but this one is scary.

[[La...]]

Yes it is scary but it’s temporary. We must believe that. What our mind thinks the body follows. So positivity and reminding ourselves that healing is happening is good for the body. Although bed bound, we can still exercise our positivity by doing many things. Distraction is truly key to passing our days. It keeps us from fixating on how terrible we feel, keeps depression at bay and gives us hope to make it through the next day. I try to make mine as fun as possible. I’m in this bed but I can still travel the world by internet. You know, you can pick a country to visit then take a whole week exploring that country learning of the culture food clothes customs historical landmarks zoos museums parks etc And even eat their food prepared in a benzo friendly way. And learn to speak their language a bit. It’s so much fun! If you really want to get into it, you can place some of their decor in your room, make art or crafts or wear what they wear to bed. YouTube has live feeds of different places like zoos, museums and aquariums from around the world. Even if they don’t have live showing there’s live recorded footage. I’m in China this week. I’ll be watching panda documentary, visiting their zoos, eating Asian style with chopsticks, learning a few Chinese words and watching videos of their festivals/holidays and cooking styles plus martial arts. Also visiting their landmarks and traditions. I’ll also be listening to their music and watching their orchestra playing. How they meditate, qigong yoga etc

Sooooo many countries to explore while I wait to get better. 

[[Fr...]]

I love your perspective it’s always so refreshing. I look forward to doing the stuff you suggest when I am able so always keep the suggestions coming.

 

Can we talk food and who encounters problems with it. It seems to be the cause of much of my symptoms. I have reactive hypoglycemia which means you get hypoglycemic a few hours after eating. I have been trying to lower the carbs because of this so they don’t spike my blood sugar and then have a rebound drop of even lower hypoglycemia. In doing this I have increased the fat to feel more satisfied and blood sugar balanced but whenever I eat I get this toxic sick heaviness burning pain in the body and seems to be linked to how much I eat in one sitting than any particular food. I will try and eat smaller meals but the stress hormones rage then with less food and then I seem to be even more sensitive to any amount I am eating. How do we know if it histamine intolerance? I didn’t think so but last night became so itchy and usually I am nausea all the time and drink lemon water but in the night I had it and it gave me that same heaviness where I can’t even lift my arms and burning pain in head and body just from lemon water. I read lemon cause a histamine reaction. I feel like if I could find some normalcy with the food things would be a little better but I feel like I am reacting to food because of benzo withdrawal and the state od my body so I don’t know what to do about it.

[[La...]]

Fruity it sounds like you’re struggling with eating. I’d suggest you eat small meals containing protein as your biggest portion of each meal. Don’t drink protein shakes. For example here’s what I eat

Breakfast between 9 - 10:30 am  scrambled egg prepared in I can’t believe it’s not butter, 1 slice of toast, 1/2 cup cantaloupe and 1 slice uncured no preservatives bacon. I eat half of my plate then wait an hour and half then eat the other half.

Lunch 12:30 - 1 grilled chicken salad with 5 whole grain or wheat crackers ( grilled chicken is prepared at home to ensure no preservatives or offending seasonings) I eat half the salad then wait an hour to eat the other half

Snack 4pm  an apple, carrot sticks with ranch ( no msg ), baked potato ( seasoned with a little butter and 1 teaspoon shredded cheese), ham sandwich, crackers with peanut butter or almond butter or grilled chicken nuggets

Dinner 6- 7:30pm beef or chicken with vegetables, beef or chicken fried rice with vegetables, spaghetti with homemade sauce without oregano, homemade pizza, beef or chicken sub with simply brand potato chips, baked fish with potatoes and green beans or hamburger with hash browns or fries or tator tots. Sometimes I eat salad for dinner.

I eat half then wait an hour to eat the other half.

I sip sprite throughout the day to keep sugar balanced. Sprite has no caffeine but has carbs and sugar. When I can’t eat it keeps me stable.

Also this might sound crazy but…I’ve eaten baby food as well. It’s organic, easy to digest and eat. It gives you the needed vitamins as well but naturally. Smoothies are also good options and can be made with almond milk or a simple vegetable smoothie. Sip on it throughout the day or after your small meals. You can also make a fruit and veggie tray to snack on every hour. Fill it with carrot slices, cucumbers, apples, pieces of turkey or ham, melon etc You can just nibble on it all day.

Your body needs carbs, proteins and fats. So don’t eliminate those. Use natural carbs that occur in your fruits and veggies. Also I have a recipe swap meet thread on here. Go take a look to see if there’s anything you might be interested in eating.

[[Be...]]

When I was a month off of the pills, I did drink protein shakes and they made me feel a whole lot better.  I couldn't eat much solid food for a long time and they didn't upset my stomach either.

[[La...]]

Some people can handle them some can’t. It’s because of the added supplements they put in them. I’ve read that the organic way of getting vitamins in the body is best.

[[Fr...]]

Fruity it sounds like you’re struggling with eating. I’d suggest you eat small meals containing protein as your biggest portion of each meal. Don’t drink protein shakes. For example here’s what I eat

Breakfast between 9 - 10:30 am  scrambled egg prepared in I can’t believe it’s not butter, 1 slice of toast, 1/2 cup cantaloupe and 1 slice uncured no preservatives bacon. I eat half of my plate then wait an hour and half then eat the other half.

Lunch 12:30 - 1 grilled chicken salad with 5 whole grain or wheat crackers ( grilled chicken is prepared at home to ensure no preservatives or offending seasonings) I eat half the salad then wait an hour to eat the other half

Snack 4pm  an apple, carrot sticks with ranch ( no msg ), baked potato ( seasoned with a little butter and 1 teaspoon shredded cheese), ham sandwich, crackers with peanut butter or almond butter or grilled chicken nuggets

Dinner 6- 7:30pm beef or chicken with vegetables, beef or chicken fried rice with vegetables, spaghetti with homemade sauce without oregano, homemade pizza, beef or chicken sub with simply brand potato chips, baked fish with potatoes and green beans or hamburger with hash browns or fries or tator tots. Sometimes I eat salad for dinner.

I eat half then wait an hour to eat the other half.

I sip sprite throughout the day to keep sugar balanced. Sprite has no caffeine but has carbs and sugar. When I can’t eat it keeps me stable.

Also this might sound crazy but…I’ve eaten baby food as well. It’s organic, easy to digest and eat. It gives you the needed vitamins as well but naturally. Smoothies are also good options and can be made with almond milk or a simple vegetable smoothie. Sip on it throughout the day or after your small meals. You can also make a fruit and veggie tray to snack on every hour. Fill it with carrot slices, cucumbers, apples, pieces of turkey or ham, melon etc You can just nibble on it all day.

Your body needs carbs, proteins and fats. So don’t eliminate those. Use natural carbs that occur in your fruits and veggies. Also I have a recipe swap meet thread on here. Go take a look to see if there’s anything you might be interested in eating.

 

I like the idea of waiting an hour and then eating the other half. Hank you for that it seems to much in one sitting doesn’t go well so I will try that. Thank you! Trying to decide what to eat so often bring a lot of anxiety so if I make a meal and just eat half the plate snd an hour eat the other half that might work. You are always so great with your advice. I am holding again about 11 days now and I can feel the med build up. It makes me so toxic sick. I am so scared and terrified trying to remind myself to breath.

[[La...]]

You’re very welcome Fruity. I know it’s tough for us but we must follow the process. In this journey there’s no skipping. I’m in a wave today so I wish I could skip to the end of this.

Ok good to hold but I wouldn’t advise holding too long. It’s not going to be easy but you can do it. You can take tiny reductions. Some other BBs had to go at a snail pace. That’s ok. Just don’t give up.

[[Fr...]]

You don’t know how much your words mean to me. Thank you for being here.

[[ka...]]

Lady D, I love your posts ..looove 'em

[[Fr...]]

Lady Do you have a feeling of falling in your body or sinking down or in even when laying down?

 

Hope everyone is hanging in there today!!

[[La...]]

Lady D, I love your posts ..looove 'em

Hello sweet Kanoba thanks for your kind compliment. You know I’m only giving back what I’ve been given. I wouldn’t dare say the things I say unless I knew they were true. They are! I’ve seen many suffering people on here including myself questioning these horrendous symptoms whether or not they’re permanent or if it’s all WD etc. Because we feel so bad, it’s natural to think that way. Because our brains are injured, it’s also natural to take those thoughts to the extreme. Simply put….here’s an explanation for why we feel like crap……our brains are angry that we took away that poison. But guess what? That SAME brain is also glad we did. So in a wave, it’s throwing a fit like a kid being told no when wanting something he shouldn’t be getting. In a window, that same kid is happy playing with its toys. What happens when a kid gets tired? It gets whinny and crying. That’s an extreme response to needing a nap. Lol Our brains are that kid having those good and bad moments each day. But doesn’t that kid grow? Those tantrums settle down becoming less frequent and less intense then eventually the kid don’t throw a fit when told no. Unheard of for a big 13 year old asking for a new game in a store and when told no, he falls on the store floor kicking and crying. Right? To me, that’s what this is…a kid that is on its way to growing up. The tantrums will stop when my “ kid” in my brain grows up. So what to do until then? Rest. Give that kid a nap! Lol Comfort the kid. Distract the kid. Tell that kid to calm down. Teach that kid coping skills to handle its stress of growing up. Reassure the kid. Accept that it’s normal for a kid to react like that. Expect for that kid to not be happy when what it wants is taken away. Distract that kid by giving it something better. But whatever you do….don’t give in. No means no! Bargaining is not an option.

I found such power in acknowledgment. We can’t change what we won’t acknowledge. I do my best to acknowledge my waves and their purpose ( to fix something). Then I change the fears they bring by not participating in the fear. I say to myself “ ohhh we’re having a wave/tantrum. I expected this. So…Ok, let’s find something comforting or positive to do until it settles”

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Lady Do you have a feeling of falling in your body or sinking down or in even when laying down?

 

Hope everyone is hanging in there today!!

 

Yes I have this.  It feels like my mattress is slowly sinking down but it’s not. When sitting up I feel like I’m falling. Especially when I go to the bathroom. Sitting on the toilet for some reason makes it worse.  Being in the bathtub increases boatiness because my body is in real water seeing it. I guess my brain thinks I’m really on a boat LOL I’m like “ hey this isn’t Gilligan’s Island. Chill out!” Lol

But mine does get better, then comes and goes in different intensities.

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Lady Do you have a feeling of falling in your body or sinking down or in even when laying down?

 

Hope everyone is hanging in there today!!

 

Yes I have this.  It feels like my mattress is slowly sinking down but it’s not. When sitting up I feel like I’m falling. Especially when I go to the bathroom. Sitting on the toilet for some reason makes it worse.  Being in the bathtub increases boatiness because my body is in real water seeing it. I guess my brain thinks I’m really on a boat LOL I’m like “ hey this isn’t Gilligan’s Island. Chill out!” Lol

But mine does get better, then comes and goes in different intensities.

 

It’s the most bizarre thing. You said it perfect the mattress feels like it’s sinking in. Thank you so much for normalizing it helps so much with the fear to know someone else has the same experience. I haven’t met anyone else on this board who had such similar symptoms as I. I appreciate all your posts it really helps me.

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One more question Lady. Do you find the falling feeling in the body even when laying down to be worse after eating?