Update: DIZZYNESS

[[Lu...]]

Hello my friends I hope who ever is reading this is feeling some peace, love and healing this evening. Haven’t posted in a bit and wanted to see if anyone can relate to this feeling.

at almost 3 months after a cold turkey I am still dealing with absolutely horrible dizziness and vertigo. It’s difficult for me to stand. I am once again terrified that it could be something else but I have had many tests over the last few months and they can’t find anything wrong with me. Whenever I am standing I feel like I am swaying back and forth, like I’m standing on a floating dock and the earth I’m standing on is almost buoyant. It also happens when I’m laying in my bed or sitting in a chair. Any slight adjustment sends my brain reeling and trying to rebalance like I’m laying in a kayak on a choppy river. Then it dies down until I move again.  
 

There are times where it eases up but for the most part it is always there. Is it possible for this to still be benzos at almost 3 months out? This is so badly effecting my life and my ability to care for my wonderful little daughter and maintain my house and career. I am so sad and scared. I just want this to go away. Anyone else have this feeling this far out?  Will this ever go away or is this my life now?
 

i pray for you all and myself nightly to let this trial come to an end for us all. And us all to be bathed in the calming and healing light of peace and health❤️🙏

-Lucas 

Edited April 25 by [Lu...]

[[Ch...]]

3 hours ago, [[L...] said:

Is it possible for this to still be benzos at almost 3 months out?

Yes. 6-18 months is a more reasonable time-frame for substantial healing. You're on your way! Hang in there.

[[Ma...]]

Hey there Lucas! You have an injury to your nervous system, and in the case of dizziness/vertigo it’s specifically your autonomic nervous system.

Your brain is misfiring as it corrects and heals. Symptom. It’s just a symptom and will go away.

Compression socks can help, hydrate, hydrate, hydrate <!!!>, avoid salt, try lying in a completely dark cool room with your eyes closed.

When these weird things, sensations pop op, just say SYMPTOM and rest assuredly it to will pass! Don’t catastrophize with thoughts of, ‘this is forever’-that just feeds the beast. Go neutral and observe them with curiosity.

Look how far you’ve come! WTG!!!! Now? KEEP GOING!!

[[ro...]]

14 hours ago, [[M...] said:

Hey there Lucas! You have an injury to your nervous system, and in the case of dizziness/vertigo it’s specifically your autonomic nervous system.

Your brain is misfiring as it corrects and heals. Symptom. It’s just a symptom and will go away.

Compression socks can help, hydrate, hydrate, hydrate <!!!>, avoid salt, try lying in a completely dark cool room with your eyes closed.

When these weird things, sensations pop op, just say SYMPTOM and rest assuredly it to will pass! Don’t catastrophize with thoughts of, ‘this is forever’-that just feeds the beast. Go neutral and observe them with curiosity.

Look how far you’ve come! WTG!!!! Now? KEEP GOING!!

Avoid salt? Why? 

[[wi...]]

On 24/04/2024 at 20:15, [[L...] said:

Is it possible for this to still be benzos at almost 3 months out?

Definitely. You have to endure. It’s common. It will fade away/ improve with time. CT is such a shock to the body and NS.
They call it “floaty boaty”. “Jelly legs” .

 

[[Ma...]]

Too much salt, especially with a damaged nervous system, increases your blood pressure particularly when at rest, so when standing up you can become light headed…

Sorry my comment angered you @[wi...]. Why? Was that necessary without a comment?

Once again-as I have said before-we are ALL merely trying to HELP. Take it or leave it.

I had such severe dizziness just recently, I had to sit on the sidewalk after walking 2 blocks. This.Has.Passed. And I am now walking 10,000-15,000 steps/day-with brief naps in between. Granted some days I am mostly in bed due to debilitating fatigue yet not all.

Edited April 26 by [Ma...]

[[Pi...]]

@[Ma...]You are so positive and amazing with how you deal with the symptoms. Can you give me any advice as I am in a very very dark place as at 16 months off I am still completely nonfunctional and have so so so many sxs, all of which terrify me 24/7. I don’t believe I will heal from this and find it so hard to cling onto hope.

[[Ma...]]

@[Pi...] I decided I have no other choice. I’ve been doing this for much, much too long as well. 
 

I am trying to tell and teach my brain there is something else to think about other than despair and catastrophe. When them doom enters I say out loud STOP! and repeat positive mantras. Does it always work? No. Yesterday was a hideous hell but today I got myself up, dusted off, yelled FU*K, put on some lipstick and went on a 20 minute walk. I forced a smile the entire way and reminded myself of all the beauty around me-I said to self: the sky is a brilliant blue! The Azeila’s are magnificent! This cool breeze reminds me of the beach!!

I can’t get my hair cut, socialize with my friends (2 years and counting although last weekend I had lunch at a restaurant-brutal but rewarding), my stress response to anything is biblical, I can’t watch TV (but I listen to MSNBC in the background as the news is my thing & I want to somehow stay current); I can’t read a book so I color mandalas…

For me, I am just faking it until I make it as I believe it will all add up 1 day. Strong body, strong mind; creativity creates neural pathways; a smile tells my brain it’s safe.

This isn’t the end of my story and it’s not the end of anyone’s on this board. I am willing to try and do anything that may bring results.

Now, talk to me at 9 p.m. tonight when my entire body revolts for the coming 7 hours and I’ll tell you I am about to die. And I believe it. But I haven’t so each day I put on that damn lipstick and just DO. For me there’s simply no alternative.

You have to believe in YOUR healing You simply must. If it’s for 1 minute-hold on to that precious minute knowing more are coming. Each night (before hell begins), I say WOO HOO, 1 more day down! I am closer than I was yesterday!!! Move. If you are in bed, bend your knees to your chest and get that blood flowing. Open a window and breathe-breathe from the diaphragm and get that blood circulating! Master your thoughts, call them out and do so out loud: SYMPTOM! I see you, now, brain move onto something else!!

Just keep, keep going and BELIEVE that healing IS happening even if you cannot see it!!!!!!!! ❤️‍🩹

Edited April 26 by [Ma...]

[[Pi...]]

@[Ma...]thank you from the bottom of my heart for replying, this is such a lonely and frightening journey. I too put my lipstick on and try and force myself to do things but then I suffer so much later in the day. Do you have bad evenings/ nights too ? I thought it was just me as so many people say they feel better later in the day and I feel much worse. Would you be happy to share with me what benzo you were on and got how long? Thank you so much.

[[Ru...]]

@[Lu...] I've been wondering how you were doing. After the positive update you posted a couple weeks ago I thought maybe you were doing good and enjoying time with your daughter. I'm so sorry to read that you are struggling again. 

With that said, please try and focus on how you were feeling, even if it was brief, and know that that is what the future holds for you (and others, of course). 

Stay positive. You will get through this my friend!!

[[ro...]]

23 hours ago, [[M...] said:

Too much salt, especially with a damaged nervous system, increases your blood pressure particularly when at rest, so when standing up you can become light headed…

Sorry my comment angered you @[wi...]. Why? Was that necessary without a comment?

Once again-as I have said before-we are ALL merely trying to HELP. Take it or leave it.

I had such severe dizziness just recently, I had to sit on the sidewalk after walking 2 blocks. This.Has.Passed. And I am now walking 10,000-15,000 steps/day-with brief naps in between. Granted some days I am mostly in bed due to debilitating fatigue yet not all.

I understand this but salt is also a very necessary treatment or component for symptoms of dysautonomia, pots issues and  symptoms, dizziness when standing etc. if you have a history of hypertension maybe avoid salt to an extent but I don’t think telling all people to avoid salt is really advice we should blindly follow. What if the dizziness is caused by orthostatic hypotension and he actually needs more salt?

Edited April 27 by [ro...]

[[or...]]

4 minutes ago, [[r...] said:

I understand this but salt is also a very necessary treatment or component for symptoms of dysautonomia, pots issues and  symptoms, dizziness when standing etc. if you have a history of hypertension maybe avoid salt to an extent but I don’t think telling all people to avoid salt is really advice we should blindly follow. What if the dizziness is caused by orthostatic hypertension and he actually needs more salt?

I believe in adequate salt in my diet as well.  I had a bit of high-blood pressure and the first thing docs wanted to do was put me on meds and I said no.  This is when I had begun my taper, maybe about 5 or so months into it.  I still believe it was a wd sxs, and it's I got over it shortly after I just kept on with my taper, exercise, and nutrition.

I'm sure a friend of mine that is in his 80s needs salt in his diet, but doctors just keep giving him one med after another and tell him to avoid salt

[[or...]]

On 25/04/2024 at 18:21, [[r...] said:

Avoid salt? Why? 

It's a very good question to ask ourselves, and I for one no longer put my life totally in the hands of a doctor, or anyone else.  I mean if I collapse I can't very well stop someone since I haven't made any arrangements for my care.  Which reminds me I really should do that.  I always look for alternatives to conventional medicine.  Just started doing that about 10 years ago because I knew how sick I was getting doing a benzo.

I do my home-work these days and make my own decisions not just rely on my doc.  Good thing he goes along with me but only after he saw me reverse my T2 Diabetes without the Metformin he wanted to give me, but just with my nutrition, oregonlady

[[Ma...]]

FYI-I don’t think we should blindly follow any advice. Healing is the responsibility of you, me, alone. 
 

If you have OP, obviously you not only need salt, you need to stand up extremely slowly. That’s a given. If you have Addison’s you need salt, elevated BP-no salt.

Every situation is.different.

Suggestions and trying to aid others with information you might find helpful is all this board is about. They are merely suggestions. That is all.

 

Edited April 27 by [Ma...]

[[or...]]

21 hours ago, [[M...] said:

@[Pi...] I decided I have no other choice. I’ve been doing this for much, much too long as well. 
 

I am trying to tell and teach my brain there is something else to think about other than despair and catastrophe. When them doom enters I say out loud STOP! and repeat positive mantras. Does it always work? No. Yesterday was a hideous hell but today I got myself up, dusted off, yelled FU*K, put on some lipstick and went on a 20 minute walk. I forced a smile the entire way and reminded myself of all the beauty around me-I said to self: the sky is a brilliant blue! The Azeila’s are magnificent! This cool breeze reminds me of the beach!!

I can’t get my hair cut, socialize with my friends (2 years and counting although last weekend I had lunch at a restaurant-brutal but rewarding), my stress response to anything is biblical, I can’t watch TV (but I listen to MSNBC in the background as the news is my thing & I want to somehow stay current); I can’t read a book so I color mandalas…

For me, I am just faking it until I make it as I believe it will all add up 1 day. Strong body, strong mind; creativity creates neural pathways; a smile tells my brain it’s safe.

This isn’t the end of my story and it’s not the end of anyone’s on this board. I am willing to try and do anything that may bring results.

Now, talk to me at 9 p.m. tonight when my entire body revolts for the coming 7 hours and I’ll tell you I am about to die. And I believe it. But I haven’t so each day I put on that damn lipstick and just DO. For me there’s simply no alternative.

You have to believe in YOUR healing You simply must. If it’s for 1 minute-hold on to that precious minute knowing more are coming. Each night (before hell begins), I say WOO HOO, 1 more day down! I am closer than I was yesterday!!! Move. If you are in bed, bend your knees to your chest and get that blood flowing. Open a window and breathe-breathe from the diaphragm and get that blood circulating! Master your thoughts, call them out and do so out loud: SYMPTOM! I see you, now, brain move onto something else!!

Just keep, keep going and BELIEVE that healing IS happening even if you cannot see it!!!!!!!! ❤️‍🩹

Sounds like you're handling your windows and waves very well   Mine aren't near as extreme, well, sometimes they do feel very extreme but it's just my lying brain. I'm very much on the mend and only halfway through a micro-taper of a 1 mg C Tablet I took for 35 years. 

I'm 71 and as far as my nutrition and exercise (including weight-bearing & weight resistance bands) I'm surprising the heck out of myself with how much quality of life I've gained.

I was a pretty sad, sack when I got here to BB, and yep, I still can get very sad but I have hope, a lot of hope, and encouragement from my peers here at BB,  oregonlady

[[or...]]

On 24/04/2024 at 17:15, [[L...] said:

Hello my friends I hope who ever is reading this is feeling some peace, love and healing this evening. Haven’t posted in a bit and wanted to see if anyone can relate to this feeling.

at almost 3 months after a cold turkey I am still dealing with absolutely horrible dizziness and vertigo. It’s difficult for me to stand. I am once again terrified that it could be something else but I have had many tests over the last few months and they can’t find anything wrong with me. Whenever I am standing I feel like I am swaying back and forth, like I’m standing on a floating dock and the earth I’m standing on is almost buoyant. It also happens when I’m laying in my bed or sitting in a chair. Any slight adjustment sends my brain reeling and trying to rebalance like I’m laying in a kayak on a choppy river. Then it dies down until I move again.  
 

There are times where it eases up but for the most part it is always there. Is it possible for this to still be benzos at almost 3 months out? This is so badly effecting my life and my ability to care for my wonderful little daughter and maintain my house and career. I am so sad and scared. I just want this to go away. Anyone else have this feeling this far out?  Will this ever go away or is this my life now?
 

i pray for you all and myself nightly to let this trial come to an end for us all. And us all to be bathed in the calming and healing light of peace and health❤️🙏

-Lucas 

Hi Lucas!  I am glad you posted, I know for me I take stop coming to BB but I always come back after what I feel, is a needed break

I've read such a huge list of wd symptoms, I seem to just chalk up anything weird up to the healing process anymore.  I find my anxiety is a lot better just not thinking to hard about things, lots of distractions.  I had a bit of imbalance, scared to walk down the cement stairs in my apartment building.  I also got dizzy every time I got up too fast.  Your post made me realize that has pretty much passed now.

I only did one, CT though, and that was long before I got to BB.  It was horrific after about 10 years of being on the C.  I was hauled off to my doctors appt. by a gal-friend that helped me call his office.  I was lucky he filled my 'script  but unfortunately, I didn't stop taking it at all as I just didn't understand I was addicted, and probably in tolerance mode. 

I just think there is a reason for every choice I've made in my life, I just wish I'd learned to make better ones earlier on, but I'm glad I'm making them today.  I think your symptoms will pass, but it doesn't hurt to get a doc's opinion, just do your research on what they may recommend and decide for yourself.  I mean they have a pill for everything right oregonlady PS good to see you, and to see we are both still kickin it

[[Di...]]

I can definitely relate to “being on the boat”. It comes and goes for me. I’m about 4 months out

[[or...]]

Hi Diggity! Welcome, I'm so glad you found BB, oregonlady

[[re...]]

Salt is crucial in all this I agree. And especially if you are having POTS. But I would at first just try and drink more water only if your water intake is not what it should be. At least 8-12 glasses throughout the day is good.  I think water helps the blood move better through your body. I have noticed many times when my head symptoms are at their worst like headaches and brief dizziness. Water always seemed to help this. Also make sure your blood sugar is even by eating something if you can. 

 I will say that salt is USELESS without adequate water intake to keep it all in balance. The decent water intake with the correct electrolytes keep the kidneys doing their thing properly. 

[[Lu...]]

Thank you to everyone for the wonderful and informed replies, i appreciate all the help ❤️