Jump to content

extreme dizziness


Recommended Posts

Hello everyone, it has been awhile since I have been here. I have tried to come off of ativan many times unsuccessfully over the years and I have been trying since around January once again. I switched from taking 2mg of ativan a day to taking 18 mg of diazepam a day.

I am currently down to 5.5 to 6mg a day and I am struggling so much. This is the farthest I have ever made it and no matter what I am coming off this horrible medication this time. I taper a little when I feel that I am ready which is about every 2 weeks and right now I am cutting a half a mg of diazepam at a time. I take 3 doses a day currently, 2mg between noon and 2pm, 1.5mg around 8pm and then 2mg between 2 and 3 am.

 

I have had severe dizziness and light sensitivity over the years and it has gotten worse each year. I started taking ativan around age 16 I believe and I am almost 25. For the past several years I have had a lot of trouble walking and I feel like I have vertigo or just got off a roller coaster or elevator etc, it is very hard to explain. The past year has gotten very bad. I literally have to use a cane if i am leaving my house which is quite embarrassing being 24 and using a cane.

 

I really don't know what to do. I can barely walk and everything looks scary. When I am walking and i stop it feels like I am still moving foreward or if i look side to side it just throws my head into some crazy stuff. These problems are most severe in lighted areas such as outside and grocery stores etc. I have collapsed at least 10 times at various places like the grocery store and home depot which is pretty embarressing because people look at me like i am on drugs and its hard to explain myself.

 

I have very long hair and i look like your typical pothead/metalhead kind of person so people automatically assume i am on drugs. I have also had to sit down on the floor in stores because i have gotten so dizzy and my legs just wouldnt hhold me up. I just completly freeze up and cant move. Can you imagine just sitting on the floor in walmart with tons of people around staring? what makes it worse is i get very angry while this is going on and I will curse a lot out loud randomly and move weird and just do weird things so i look like I am on drugs but I am complete panic mode and feel like i am fighting for my life.

 

Anyway what I would like to know is, is this intense dizziness probably caused by the pills/withdrawal? Should I go to the doctor about it? I hate going to the doctor because everytime I go to any doctor they automatically tell me everything is all in my head, which i know a lot of it is "other brutal mental illness i suffer from" but I know this dizziness etc is not in my head and it is very real. I also feel like I cant think and it scares the hell out of me.

 

I feel like I am having a stroke or something because I used to be very smart and now I am kind of slow and struggle when i am speaking, trying to put sentences together. I cannot remember what simple things are and when i try to remember i freak out hard because my mind feels blank and i feel like i am going to faint or pass out.

 

here is one example. The other day I heard someone talking about porcupines on tv while i was working on my computer "i am a programmer" and I couldnt remember what a porcupine was which seemed unreal to me. I ended up thinking a porcupine was a pine cone and it sent my mind into panic because i knew that was not right and i ended up yelling to my girlfriend to tell me what a porcupine was cause i felt like i was going to lose it or faint because i coulndt think properly.

 

Sorry if my spelling is bad. I have been awake for who knows how long. My insomnia lately has just been ridiculous. I cannot go to sleep until I am actually so tired that when I lay down i pass out almost instantly from being so tired. I stay up for 24 hour + periods all the time and sleep very little and do it all over again and its miserable.  I am so miserable from so many different problems that it is unbelievable. I hope i feel better one day because i cannot imagine a lifetime of this terror, it has gone on for far too long already.

Link to comment
Share on other sites

Hello there,

 

I crossed over from Clonazepam to Diazepam and and I am now down to 8mg of Diazepam.  I've been tapering by 1mg per week up to this point.  I too (as of lately) suffer from incredible dizzy spells.  I'll walk my child to school and then wonder how I'm going to walk back w/ out passing out.  I feel like my eyes are everywhere and I can't focus.  It's been a rough week all and all...and I see you're a man, so you can't relate to this aspect of it, but hormones DO NOT help. lol  It's ALWAYS a rough week.  Ugh.  I have been fortunate enough to not have too many issues w/ insomnia, but I do wake up often in crippling fear where my entire body gets cold chills/tingles and I feel "frozen"...like I can't move.  i want to cry/scream, but I'm afraid if I ever utter a word I'll "lose it".

 

The dizziness is tough and I really really hate it...but in that past years when I came off of a few ssri's, I had the same withdrawal effect...not as long-lasting, but it was there and it was annoying.  I just find that when coming off of a benzo, our senses are SO heightened that now the dizzy spells really bother me and make me feel scared, whereas when coming off an ssri, it was just annoying and it passed after a few weeks.

 

I made tons of errors too while typing.  It's like my hands aren't my own.  I can't think straight and my body feels like my finger is in a electrical socket and I'm forever being zapped.  I was doing well at the beginning of the taper...and in all honesty, coming off of Diazepam is still WAY better than coming off of Clonazepam - that was HORRID.  But it's still unsettling and I cry a lot b/c I'm afraid of what the future holds.  I just remind myself that there are SOOOOO many success stories and we will get there.  I've come this far so there is no way I'm giving up now.  I WILL be off of these by summer and then my body will be "my own".  Finally. 

 

I hope this helps...I know I haven't really given any advice, but just know you're not alone.  I am constantly reminding myself that it's just my body healing...hard to believe when your in fear, but sometimes it helps.

 

ALL the best...I wish you well,

Schatje

Link to comment
Share on other sites

Hello there,

 

I crossed over from Clonazepam to Diazepam and and I am now down to 8mg of Diazepam.  I've been tapering by 1mg per week up to this point.  I too (as of lately) suffer from incredible dizzy spells.  I'll walk my child to school and then wonder how I'm going to walk back w/ out passing out.  I feel like my eyes are everywhere and I can't focus.  It's been a rough week all and all...and I see you're a man, so you can't relate to this aspect of it, but hormones DO NOT help. lol  It's ALWAYS a rough week.  Ugh.  I have been fortunate enough to not have too many issues w/ insomnia, but I do wake up often in crippling fear where my entire body gets cold chills/tingles and I feel "frozen"...like I can't move.  i want to cry/scream, but I'm afraid if I ever utter a word I'll "lose it".

 

The dizziness is tough and I really really hate it...but in that past years when I came off of a few ssri's, I had the same withdrawal effect...not as long-lasting, but it was there and it was annoying.  I just find that when coming off of a benzo, our senses are SO heightened that now the dizzy spells really bother me and make me feel scared, whereas when coming off an ssri, it was just annoying and it passed after a few weeks.

 

I made tons of errors too while typing.  It's like my hands aren't my own.  I can't think straight and my body feels like my finger is in a electrical socket and I'm forever being zapped.  I was doing well at the beginning of the taper...and in all honesty, coming off of Diazepam is still WAY better than coming off of Clonazepam - that was HORRID.  But it's still unsettling and I cry a lot b/c I'm afraid of what the future holds.  I just remind myself that there are SOOOOO many success stories and we will get there.  I've come this far so there is no way I'm giving up now.  I WILL be off of these by summer and then my body will be "my own".  Finally. 

 

I hope this helps...I know I haven't really given any advice, but just know you're not alone.  I am constantly reminding myself that it's just my body healing...hard to believe when your in fear, but sometimes it helps.

 

ALL the best...I wish you well,

Schatje

I know exactly what you mean. Every week I have to walk around the block which isn't too far of a walk maybe 3 minutes, but I have to get a lawn mower from a buddy to mow my lawn and while I am walking I think to myself "how am I going to walk back home". It feels like death or something. The dizziness is unbelievable and i just feel like I am going to drop dead or pass out. I am sorry you have to deal with the same type of issue, This stuff is terrible.

I was also tapering 1mg at a time until 6mg and then I dropped a half because of how hardcore the difference from 6 to 5 was. I have to say though 5.5mg feels about the same as 5 did. I am hoping to drop my pills faster than 0.5mg every week or two but I can't even imagine going down father than I already am.

 

I am also afraid of what the future holds for me. These pills and other mental issues i have developed on these pills have ruined my life.

Link to comment
Share on other sites

I am so glad I read your post today because I was feeling horrible and thinking I was the only one who feels dizzy and off balance ALL the time.  I have felt like I am on a carnival ride since Feb. 24 and I really want to get off of it.  I keep thinking I am never going to get better and how am I going to cope with being like this the rest of my life.  I was even thinking about calling my doctor tomorrow but then decided he wouldn't know what to do either.  I have had a CT scan and a MRI and both came back normal.  This has to be withdrawals and our brains are just trying to get back to normal.  It is so frustrating and debilitating.  I tried to go shopping with my daughter today and had to sit in a chair at the store while she shopped.  I then came home and layed in bed and just cried because I am so tired of this taking over my life.  I just want to feel good again.  I have also found that I can't remember words when I'm trying to talk to someone.  I can't seem to think anymore.  I have a job I have to go to and I am having a hard time figuring out how I'm supposed to make it there everyday when I know I shouldn't be driving.  I wouldn't recommend going for any tests unless it would make you feel better. You will just end up with a ton of medical bills and no answers.  I'm pretty sure we are in withdrawal and eventually we will feel better.  The not knowing when is most frustrating.  Maybe if I had a date when this would stop I could handle it better. Thank you for posting this. We are not alone.
Link to comment
Share on other sites

  • 2 weeks later...

Thank you for posting and sorry you are going through this.

I have to keep this short as I cant even handle being on the computer.

I have trouble reading post as it does my head in.

But I do have all what you have and its a night mare

 

Link to comment
Share on other sites

I didn't at all.  This is a whole new ballgame for me.  I'm starting to think it isn't benzo related because it's gone on for so long.
Link to comment
Share on other sites

I've just developed dizziness after lunch today and I'm ten days into my last cut of 4.5mg. I know it's WD but going to have to go to bed instead of grocery shopping like I planned. Forgetting words is something that happens to us while we go through this. Dizziness is a new one for me and I don't like it!

 

Frannie

Link to comment
Share on other sites

My dizziness started about 10 days after I stopped the clonazepam so I suppose it must be related to benzo withdrawal.  I just never figured it wouldn't last this long.  It is going on three months of a nonstop boat ride on rough waters.  I would really like to know if anyone has had balance issues and dizziness for this long and when it finally stopped.
Link to comment
Share on other sites

What you described sounds exactly like benzo w/d symptoms.  I too was on Ativan and was making the switch to Valium.  Half way through I started to feel full blown w/d symptoms with a lot of psychosis.  I could no longer drive or do my own shopping.

 

This was the beginning of learning how to ask for help from people around me.  I had always been a fiercely independent person for most of my life, so this was difficult for me.

 

I decided to just get it over with and go to a detox (which I do not recommend).  I came home 100 times sicker from the rapid withdrawal.  I literally could not cook food or even bathe I was in such bad shape.  I had to learn what true humility was.

 

At a little more that 16 weeks out I am still unsteady on my feet and have poor motor coordination.  I still can't drive or do my own shopping, but I am starting to have a better day here and there.  When I first got home I was to sick to even sit and type at the computer or understand anything I was reading for that matter.

 

What I am trying to say is that you can begin to feel the benzo w/d during the Ativan to Valium switch and it can be very disabling.  Don't be afraid to ask for help.  You may have to educate your friends and loved ones as to what is going on and make them understand that benzo w/d is different than w/d from other types of drugs.  The road to recovery is longer and tougher.  I only hope that you have people in your life who you can depend on to help you.

Link to comment
Share on other sites

Interesting that this happened to you when switching from ativan to Valium

I had to switch from valium to a generic and Ive found that all sxs have got worse since then.

Ive been on the generic for 5 months now with not much improvement.

Every time I stand I feel like Im about to fall flat on my face and my brain just turns to mush.

 

Link to comment
Share on other sites

Hi Cryptic. Dizziness/vertigo  is what landed me in the ER and caused two mini panics post taper.  Fortunately at 18 months off valium, it's a thing of the past and will pass for you as well.  If the dizziness is recent and the insomnia bad, you may wish to hold your taper for a few weeks to stabilize and feel a little better before resuming.  Also, how large are your cuts now?

 

I had a particular kind called BPV (benign positional vertigo).  It only occurs when you lie down on one particular side but not the other.  I was referred to a vestibular therapist and an otoneurologist.  First they want to give you an audiogram to rule out some kind of tumor.  Then they wanted to give me an expensive auditory ct scan which I refused.  I knew inituitively that the vertigo I experienced was caused by the cessation of the valium three weeks earlier even though the idiot ER doc said it was not possible to be related to that.  Don't they teach them in medical school that valium takes up to a month to process out of the body?  Apparently not.  

 

Anyway, the vestibular therapist gave me something called Brandt Daroff exercises to do (You can google it and try them out, see if it helps your dizziness. It basically involves a series of exercises getting up and sitting down, lying down on each side, eyes opened the closed....).   With BPV, lying down on the "good side" helped but the other side caused spinning. Actually, I never had vertigo while sitting or standing, only lying down on that one side.  Apparently a particle in the inner ear gets jarred loose and needs to fall back into place.  The exercises seem to help some, not for others.  After talking with my ENT and the otoneurologist, I elected to reinstate to 5mg valium.  The vertigo went away within days whereas I had been told by friends and friends of friends that it would take weeks, maybe even months to resolve.  I'm not suggesting reinstatement, only that it worked for me after my c/t nearly three years ago.  

 

Vertigo is qualitatively different from dizziness.  I've had both.  Vertigo is a spinning of the room, much like you've had too much to drink, can even result in falling over or down (happened to me but fortunately i was on the bed).

 

Dizziness or feeling off balance can be, for example,  after getting up from lying down and feeling faint (had that too).  Mine was both withdrawal related and later from elevated blood pressure, which also resulted in jelly legs.  There are all sorts of loverly symptoms one can get!

 

 The good news is that "this too shall pass".  Hang in there.  If you suspect you might have vertigo, it might be wise to see your ENT.  He/she can differentiate whether you have BPV and also if you want to rule out an auditory tumor, get an audiogram...  Interestingly, some middle ear diseases like Meniere's I believe is treated with valium or other benzodiazepenes.  It may be the tinnitus and/or the motion sickness.  So it did not surprise me that by going off the valium c/t that I ended up with a rebound vertigo for lack of a better term.  Anyway, dizziness at times is "normal" on this journey.  It does pass and sometimes can be lessened by watching your diet.  You might want to check your blood pressure.  Many drug stores like CVS or WalGreens have free machines you can use and you can also buy portable ones to have at home and check your Blood Pressure throughout the day.  My doctor wanted to put me on beta blockers but I was thru with medications and elected to change diet and exercise, which took care of the elevated BP within a week or two.

 

Hang in there buddies,

 

Vertigo

Link to comment
Share on other sites

×
×
  • Create New...