12-24 months and up support group

[[La...]]

P. S.  LadyDen, thank you for the heads-up on the Netflix series, Reign.  I was pretty much bed bound yesterday so started watching it, and am inclined to continue on with it.  Wow, I didn’t recognize Megan Follows from Anne of Green Gables, and why would I, as she is now 53 years of age.

 

The costumes and sets are lovely......and the men in their breeches are pretty good eye candy....almost made my headache go away, and sure increased my heart rate!!!!

 

Hugs,

 

GG

:laugh: YEZZZZZ! I told you! Plus it’s a great storyline too. Their dresses are gorgeous! I’m glad you’re enjoying it. I’m on season 3. I’m warning you that it’s addictive to watch. lol

If you want a funnier one to watch try Grace and Frankie!

[[Ga...]]

From one wavy buddy to another, Hi LadyDen.  I am so sorry you are also in a wave after having had some better days!  You are right....this three steps up and two steps back, or vise versa.....is cruel!  I have a sinus infection of some kind with face and ear pressure and headache.  Relying on mild otc meds and drinking lots of water.  The fear of getting a bacterial infection and having to take an antibiotic is real and intense.  I still believe that the Macrobid I took last June set me back, and then to add insult to injury, I tested negative for a UTI!!!!

 

I have watched and loved Grace and Frankie.....omgosh they are so good together.  And their ex-husbands are the topping on the cake!  If I didn’t have Netflix, Apple and Amazon Prime I would be lost.  DISTRACTION is key in this horror of BWD.

 

Off to guzzle down another quart of water

 

Hugs,

 

GG

[[La...]]

Sorry about UTI. Hope it gets better soon. Cranberry juice is a good way to help get rid of it. 

I also get what I think is sinus infection but they’re not. It’s WD symptoms lol I’m having sinus pressure right now too! Headache to top it off lol I put warm towel on my face around my nose and do gentle massage to relieve the pressure. Temporary relief but I’ll take it!

Yes grace and Frankie is so hilarious, I agree with you…thank god for Netflix and YouTube

Wonderful distractions they give. No way I’d of made it through this without those.

[[De...]]

Hey thanks LadyD for the Netflix recommendation for Reign!  I'm still working on Virgin River - in the middle of Season 3!

 

GG I'm sorry about the popcorn incident.  Sounds like my hot dog experience!  I've def noticed that if I eat something and my gut is off then I get stuck in a wave.  I've tried to do my best and take probiotic foods, plenty of fiber, but it has a mind of it's own.  I too have been mostly gluten free and who knows if it helps but whenever I go off it and eat more wheat I find I am less well.  But I can never say it's really the gluten bc sometimes I do eat it and I'm ok.  So I've been just keeping it minimal.  My husband and daughter's Bday are this WE and I'm going to make a cake and I will eat a piece for sure.  I'm so tired of all the RULES of BWD!!  How much can a person take?

 

 

[[La...]]

Hey thanks LadyD for the Netflix recommendation for Reign!  I'm still working on Virgin River - in the middle of Season 3!

 

GG I'm sorry about the popcorn incident.  Sounds like my hot dog experience!  I've def noticed that if I eat something and my gut is off then I get stuck in a wave.  I've tried to do my best and take probiotic foods, plenty of fiber, but it has a mind of it's own.  I too have been mostly gluten free and who knows if it helps but whenever I go off it and eat more wheat I find I am less well.  But I can never say it's really the gluten bc sometimes I do eat it and I'm ok.  So I've been just keeping it minimal.  My husband and daughter's Bday are this WE and I'm going to make a cake and I will eat a piece for sure.  I'm so tired of all the RULES of BWD!!  How much can a person take?

Yes I enjoyed virgin river too. I’m waiting on the next season. I notice I feel like crap if I eat taco seasoning. I think it’s the chilli pepper in it. Because I’ve had the other seasonings with no problem. Chili pepper is the only thing different. But I love tacos so this sucks. I remember your hot dog incident. Did you try the uncurled beef ones?

Aren’t these sensitivities ridiculous!!!!! Exercise intolerance??? Head symptoms ?? All ridiculous and way too long. I can’t wait until I’m healed. I might go on a crusade to keep other people from taking those pills. It’s not worth the hell they give us. Sadly we didn’t know. We were not educated on the damage. Lesson learned!

Deanna did you ever have trouble in the sun? I noticed I get a little sick feeling when I get sunlight.

[[La...]]

Garden I’m glad your UTI was negative. And honestly I’m not surprised. I’ve read about others including myself that this happens to. Urine tests and scans negative. So it’s BW. It just keeps on causing trouble. Lol where is a magic wand when we need one? Right?

[[De...]]

Hey thanks LadyD for the Netflix recommendation for Reign!  I'm still working on Virgin River - in the middle of Season 3!

 

GG I'm sorry about the popcorn incident.  Sounds like my hot dog experience!  I've def noticed that if I eat something and my gut is off then I get stuck in a wave.  I've tried to do my best and take probiotic foods, plenty of fiber, but it has a mind of it's own.  I too have been mostly gluten free and who knows if it helps but whenever I go off it and eat more wheat I find I am less well.  But I can never say it's really the gluten bc sometimes I do eat it and I'm ok.  So I've been just keeping it minimal.  My husband and daughter's Bday are this WE and I'm going to make a cake and I will eat a piece for sure.  I'm so tired of all the RULES of BWD!!  How much can a person take?

Yes I enjoyed virgin river too. I’m waiting on the next season. I notice I feel like crap if I eat taco seasoning. I think it’s the chilli pepper in it. Because I’ve had the other seasonings with no problem. Chili pepper is the only thing different. But I love tacos so this sucks. I remember your hot dog incident. Did you try the uncurled beef ones?

Aren’t these sensitivities ridiculous!!!!! Exercise intolerance??? Head symptoms ?? All ridiculous and way too long. I can’t wait until I’m healed. I might go on a crusade to keep other people from taking those pills. It’s not worth the hell they give us. Sadly we didn’t know. We were not educated on the damage. Lesson learned!

Deanna did you ever have trouble in the sun? I noticed I get a little sick feeling when I get sunlight.

 

Hi LadyDen - There are times when the sun really wipes me out.  But for the most part if I sit in direct sunlight for a half hour or so I'm fine and I find it helps me sleep better.  Probably because I'm getting my Vit D.  But this weekend I did a half day in sun and wind, and I noticed it made me a bit unsettled.  I think it was like a sensory overload or something - like when I'm socializing too much.  And for some reason I am now waking up at about 4:30 - 5am and I'm up for the day.  I was sleeping until 7:30 so I guess it's a new shift.  Again.

 

I SO AGREE with you on this damn sensitivity thing.  I'm hoping it is starting to mitigate a bit.  I ate tuna marinated in a soy sauce mixture and it was fine.  I was staying away from soy sauce for some reason I read about ages ago.  I am most impatient about the exercise intolerance.  I've really been taking it easy to keep my symptoms at bay, but I'm afraid I'm turning to mush.  And I've gained 15 pounds!!!! Wahhhhh.....

[[La...]]

Hey Deanna. I started eating tuna again too but without any soy sauce. I stay away from that. I just mix it in a bowl with chopped boiled eggs, seasoning salt and little bit of light Mayo.

Well atleast I’m not the only one experiencing sun issues. I do sleep better after sun exposure too but it definitely revs me up. I time it and don’t do more than 15 minutes.

About two nights ago I’ve had another episode of very strange sudden spinning with loss of muscle tone. Can’t hold myself up or stand up. I’ve had this happen before but not this severe. Very scary. I can’t walk. I haven’t seen anyone else with this.

Good to hear from you. Big hugs

[[De...]]

Hey LadyDen, does the sudden spinning happen in the middle of the night, like when you awake, go to the bathroom, and then experience it?  Over the course of this recovery I have experienced a lot of little and not-so little symptoms occur in between sleep cycles.  That was when I had my most difficult pain flares which have thankfully reduced now. 

 

What does the loss in muscle tone feel like?  Is it like a severe weakness?  I think our Autonomic Nervous System is so out of whack that anything can happen!

 

I feel as though my symptoms are very very slowly fading, but my Gosh is it SLOW!

[[La...]]

No my sudden spinning happens when I stand up. Just out of the blue I’ll be feeling fine then boom. I immediately get weak all over and can’t hold myself up. I’m still conscious but my brain “ shuts off” for a few seconds. I’m grateful that each time it happened I was near something to prevent injury. It’s absolutely terrifying. It’s strange that during my recovery I’ve always had WD symptoms of not tolerating standing or sitting up. Over these 15 months I’ve made pretty good progress in those areas until last Saturday I was hit with a big episode of the seizure like event. It is noticeably better today but not by much. As you said this is sooooo slowwwww to heal.

Deanna let me give you and whoever is reading this an idea of my days. Hopefully this will answer your questions.

6:30am I wake up very boaty plus morning dread. In varying degrees. Sometimes is intense sometimes mild. Sometimes I have adrenal surges lasting a short timespan and sometimes I don’t ( just feel like crap). This lasts about 1-2 hours then I start a series of waves ranging from 4-8 on a scale of one to ten. Mostly I start with the biggest one 7 or 8 intensity then the smaller ones come directly behind that one beginning my window. By lunchtime I’m either in a window or starting one. So from 12:30/1 until about 6 or 7pm my symptoms are in the background annoyingly. Like clockwork I began feeling an uptick in my boatiness, ear ringing, dizziness and other symptoms start popping in and out ( mild muscle twitches/spasms, sneezing, sweats, fatigue, yawning, ear popping, sinus pressure, surges of goosebumps, chills, itchy fingers/feet, head pressure and visual disturbances). Not all of these at once. They seem to pair up in groups of 2 or 3 taking turns. During this time I watch Netflix or play games to ignore them until 10:30 or 11 if they’re not too bad. By this time my boatiness is tense so as I’m drifting to sleep I’m rocking/ swaying/ bobbling up and down. To help tune it out I meditate going to a nice garden in my mind or I embrace the boatiness by pretending I’m being rocked to sleep as a baby. Sometimes I began a wave as I’m going to sleep. If I do, I don’t sleep solidly waking up a few times during the night and the wave greets me when I wake. I also for the past month or so have been waking up around 3-4 am but I’m able to fall back to sleep quickly. This is definitely a shift 

I use to sleep solid 6 or 7 hours too. Hopefully we’ll shift back as we heal more.

I also experience minor annoying symptoms in between waves or during my windows. When I wake up each morning I’m very boaty. I barely can make it to the bathroom. Seems like we’re experiencing the same thing.

[[Be...]]

Sorry LadyDen, it makes me angry how many of us are being injured by head drugs.  They're poisons!

[[le...]]

Need some virtua hugs here. Last few days feel like I've completely lost my mind. Anxiety gone off the scale for some reason. Starting to question whether I am mentally ill. I seem get a week or so when can just about manage, then the anxiety kicks into over drive. Even thinking about trying other meds but not sure what. Trying the AD's sent me completely crazy, just worried anything else make me worse. Just don't know what to do anymore.

[[De...]]

Hey Leann, you mentioned that last week you were able to manage better, and this week not too well.  That is the hallmark of our recovery.  Waxing and waning for no apparent reason.  You may be entering that part of recovery which just requires more time.  I know you are tired of hearing that, but so many others have taken this long.  Thinking you may be mentally ill is also part of the whole recovery, and I'm no expert but if you really were mentally ill would you be able to ponder that possibility in the rational way you have just expressed?

 

Do you keep a journal?  Rather than thinking about taking more meds, perhaps it would be an option to monitor your symptoms over the next several weeks to see if a new pattern is emerging?  I am so sorry that you are having such a difficult time, and we all want you to find your way out of this Benzo induced hell....

 

Oh, almost forgot those hugs you need:  :hug:

[[La...]]

Thank you Becks. It makes me angry too. Maybe someday soon something will be done to stop them from giving them out like candy. I’m hoping today is better for you and me both. Right now I’m in a bad wave.

Leann I agree with Deanna that you should keep a daily log of your symptoms and on a scale of 1-10 how bad you feel in the morning noon and night. I recall suggesting this to you before. It really helps to look back in order to see progress or patterns and sometimes catching anything that may be triggering. Also journaling gives us a way of getting out feelings. Oftentimes that by itself helps mental state.

Deanna how are you doing? Excited about your upcoming milestone?

What’s everyone doing this weekend?

[[le...]]

I did start doing one will have to go back to it. Only different thing is have tried cutting out biscuits to try loose bit of weight. Just got slammed by really awful symptoms yesterday like being in acute again. Just had flu jab so hoping won't make things worse. The first 8 months or so in withdrawal weren't too bad but since having adverse reaction to the AD's been downhill. Have read some people get increase in symptoms before they recover. How are you doing, least you seem to have had some improvement in symptoms  in past.

[[La...]]

Hugssssssss Leann sweetie! That flu jab may have revved you up. Am sorry it’s bad on your end. Good news is that it may not last long so hang in there. I think once you start back journaling that you’ll feel better. I’ve even just yelled out at my symptoms and felt better.  Do you remember the movie Steel Magnolias? Julia Roberts, Sally Field etc? Do you remember at the funeral scene Sally Field was so bottled up with emotions that she started telling Wheezer that she wanted to hit something? She offer up the other friend to be hit then they all laughed. 

Sometimes we have to find something to make us laugh at our pain. YouTube has a lot of funny comedians stand ups posted. I have watched George Lopez, Lavelle Crawford, Rickey Smiley, Steve Harvey etc. Hilarious 🤣

Also If you want funny and cute then watch Steve Harvey with kids that do amazing things. Those kids are so hilarious.

We must bring some kind of enjoyment to our lives each day. Because this is sooooooo hard and such a long recovery then it’s necessary for our mental health. Just the stress of symptoms is bad enough but we also have to go through life’s struggles, dealing with family issues and we’re in a pandemic. It’s a lot! Take a minute to enjoy something even if it’s just for 10 minutes. That’s what I do several times a day even though I’m back in this bed. Leann I do care about you. I want to see you get better as well as myself and everyone suffering through this. Time will prove to be our relief.

[[...]]

Need some virtua hugs here. Last few days feel like I've completely lost my mind. Anxiety gone off the scale for some reason. Starting to question whether I am mentally ill. I seem get a week or so when can just about manage, then the anxiety kicks into over drive. Even thinking about trying other meds but not sure what. Trying the AD's sent me completely crazy, just worried anything else make me worse. Just don't know what to do anymore.

 

Hugs to you Leann.  Hope you find peace soooon!

[[le...]]

Hugssssssss Leann sweetie! That flu jab may have revved you up. Am sorry it’s bad on your end. Good news is that it may not last long so hang in there. I think once you start back journaling that you’ll feel better. I’ve even just yelled out at my symptoms and felt better.  Do you remember the movie Steel Magnolias? Julia Roberts, Sally Field etc? Do you remember at the funeral scene Sally Field was so bottled up with emotions that she started telling Wheezer that she wanted to hit something? She offer up the other friend to be hit then they all laughed. 

Sometimes we have to find something to make us laugh at our pain. YouTube has a lot of funny comedians stand ups posted. I have watched George Lopez, Lavelle Crawford, Rickey Smiley, Steve Harvey etc. Hilarious 🤣

Also If you want funny and cute then watch Steve Harvey with kids that do amazing things. Those kids are so hilarious.

We must bring some kind of enjoyment to our lives each day. Because this is sooooooo hard and such a long recovery then it’s necessary for our mental health. Just the stress of symptoms is bad enough but we also have to go through life’s struggles, dealing with family issues and we’re in a pandemic. It’s a lot! Take a minute to enjoy something even if it’s just for 10 minutes. That’s what I do several times a day even though I’m back in this bed. Leann I do care about you. I want to see you get better as well as myself and everyone suffering through this. Time will prove to be our relief.

 

 

 

 

 

 

 

 

 

 

Thanks Lady Den , yes I do remember that film. Just the rapid cycling symptoms finding really hard, never really getting a window. Not knowing best thing to do. Virtually impossible see a GP here anyway at moment. Have explain why to receptionist then all you get is a phone call. They are talking about heating bills going up by £500 a year here, and long queues for petrol due to driver shortages so lot stress. Sure people get fed up with me moaning, just have vent when gets too much. How are you, have you had any more bad dizzy spells.  Did manage get to my pilates class today. Think I'll read Baylissa's book again she took long time to recover😊

[[Be...]]

Hugs to you leann.  LadyDen,  you mentioned that you can't cook your own meals.  Who does your cooking for you?

[[La...]]

Very good Leann that you did Pilates. On YouTube there are chair exercises with fun music that I really enjoyed before I got slammed again with this. I think the lady name is Sherry. It’s mostly seniors doing them on the video. You can look it up by searching chair yoga for seniors. Those always put a big smile on my face!

Becks I haven’t had another episode but still trying to bounce back from the last one. I am having waves that are like acute especially in the mornings after my dread. I do have someone coming over to fix food but most of the time I’m having to wait a long time. I’m hiring someone to help me until I’m back on my feet.

Hello Jben how’s it going?

Deanna what are your plans this weekend?

Matter of fact what’s everyone doing?

[[...]]

Good morning LadyDen.  I am better this morning.  Got some sleep.  Still woke up at 3am tho.  I can manage the symptoms today!

 

Sounds like you are experiencing some pretty intense waves.  That ‘dread’ feeling is awful isnt it!

[[La...]]

Yes it is JB! Every morning I think to myself “ good lord in heaven!” 😂

Good morning to you too! Yes im having a rough time but hopefully it won’t last long. I am seeing small improvements. I sleep well too but I wake around 3-4am too. Thankfully I go right back to sleep. Good to hear from you my friend. May today be a good day for us both. Where are you located?

[[...]]

Im in LA currently.  Live part of the time in San Francisco and the other part in LA.  When the pandemic hit I had to choose.  It is warmer in LA so that is where I am haha. 

[[La...]]

Sounds like you made a good choice JB. I’ve visited family and friends in LA. Always a pleasure but I’d never want to live there. The traffic and time it takes to get anywhere is ridiculous! Lol

I’m from the other LA ( Louisiana) but moved to SC. It’s really lovely here but I miss the culture of LA. A whole different world!

[[le...]]

Have you read Baylissa's  book, recovery & renewal, she had dizzyness the whole way through made me think of you. I'm re reading it , only book I've found that helps through this. Seems mental symptoms are very common. So far OK after flu jab, had stinking headache but that's all. Have calmed down bit, am keeping a diary now will mark when I get really bad spells. Watching good drama on Netflix called the Maid. About single mum's struggle, sounds bit heavy but  a good story, got a really cute little girl in it.