The Dizziness Group: For those who are floating, boating, falling or flying

[[La...]]

Hi Dizzy Buds,

Just jumping in here to say hello and see how everyone is doing. Also, I just posted this CBC article in the News section, and I thought I'd post it here too. It's about gabapentin and pregabalin, two medications that are sometimes prescribed for pain. Well, according to this article, there's little support for that off-label use, and of course, they have a number of side effects, including dizziness, fatigue, mental fogginess and visual disturbances -- many of which are part of the benzo withdrawal syndrome.

 

I'm not sure if anyone around here is taking these types of medications, but please have a look at the article, if so.

 

http://www.cbc.ca/news/health/gabapentinoids-low-back-pain-1.4248651

[[so...]]

Lapis,

 

I took Gabapentin for 3 years and CT'd it the same day as Ativan.  YES YES YES, to all the symptoms you mentioned.  Never felt them while ON Gabapentin.  But when I jumped off, oh boy!

 

Sofa

[[La...]]

Really, Sofa? That's crazy! I would have thought you'd have the side effects while on it too. So you were okay while taking it? Did it help you with your pain? There appears to be little support for their use with back pain. It looks like there are fewer and fewer pharmaceutical options for pain control. Opioids work, but they're very dangerous. Acetaminophen and the NSAIDS can work for some pain, but they, too, have side effects that can be serious (e.g. liver issues, gastric issues, etc.). And I was never sure about the gabapentinoids anyway.

 

How's your back these days, Sofa? Better, I hope. 

[[so...]]

Lapis,

 

My back is completely fine now.  After six days last month of the worst nerve pain I've ever felt in my life, POOF gone!

 

And, yes, the Gabapentin did work for my back pain.  No side effects from taking it, except maybe a bit of cog fog.  I can't remember now.

 

Sofa

[[La...]]

Ah, good news, Sofa!

I'm so glad your back is alright now -- and also that the Gabapentin helped you with minimal side effects. That's the best one could hope for when it comes to medications.

 

[[La...]]

Hi Dizzy Buds,

How is everyone doing these days? It's been mighty quiet around here, and I'm not sure if that's a good thing or a bad thing. I've had my usual every-other-day pattern of 8s mixed with 7s or 6s. Never two good days in a row -- just to drive me crazy, I'm sure. Lots of tears lately too. I really want a break already!

 

Anyway, I just thought I'd say hello. I really do hope everyone is doing better and having some good minutes/hours/days.

 

Take care, All! 

[Guest [Le...]]

Hi Dizzy Buds,

How is everyone doing these days? It's been mighty quiet around here, and I'm not sure if that's a good thing or a bad thing. I've had my usual every-other-day pattern of 8s mixed with 7s or 6s. Never two good days in a row -- just to drive me crazy, I'm sure. Lots of tears lately too. I really want a break already!

 

Anyway, I just thought I'd say hello. I really do hope everyone is doing better and having some good minutes/hours/days.

 

Take care, All! 

 

Hi, dear Lapis, glad you are getting 6s now and then. I'm mostly stuck at 6-7, but grateful for that, because I'm no longer dizzy while sitting (fairly still) or lying down. Had two days of 9s, and no idea why, but then it dropped back again.

 

One thing I noticed just this week, and it's really weird - a few times when I've gotten up at around 3 am, the dizziness was down to around a 2, it was just amazing.

 

Not sure what would account for it, but thought I'd mention it - wonder if any other Dizzy Buds have had this.

[[La...]]

Ah, LeslieAsh, it's good to hear that you're getting those better days! Excellent! As far as the middle of the night goes, I do think that's when it all happens! Why would I have 7 one day and then an 8 when I wake up? What's going on in the brain overnight? When I awoke at 3:30 a.m. today, I wasn't so dizzy as I lay there, but when it was time to get up a couple of hours later, I was definitely dizzy. It's a full-on 8 today.

 

I really am glad to know that you're getting some peaceful moments in sitting and lying. It's a good sign. Very hopeful! May it continue! 

 

 

[Guest [Le...]]

Ah, LeslieAsh, it's good to hear that you're getting those better days! Excellent! As far as the middle of the night goes, I do think that's when it all happens! Why would I have 7 one day and then an 8 when I wake up. What's going on in the brain overnight? When I awoke at 3:30 a.m. today, I wasn't so dizzy as I lay there, but when it was time to get up a couple of hours later, I was definitely dizzy. It's a full-on 8 today.

 

I really am glad to know that you're getting some peaceful moments in sitting and lying. It's a good sign. Very hopeful! May it continue! 

 

Thanks, Lapis - we are all on such a weird journey together. Won't it be great when we can throw a reverse Bon Voyage party for ourselves, when we all march in a straight line off the rocky boat, and back on to solid ground again? 

   

[[La...]]

You betcha, LeslieAsh! We'll have a wild party, I'm sure! No alcohol, just water, of course, but lots of great conversation, music and dancing. I will ride my bike to wherever in the world we decide to have this party. 

[[La...]]

Hi Dizzy Buds,

How is everyone doing? Hanging in there? It's another dizzy day for me, and I'm just trying to get through it by reading and listening to the radio. Not a happy camper right now.  :'(

 

I came across this article on PubMed and thought I'd post it here, in case anyone is interested. It's called "Central not peripheral vestibular processing impairs gait coordination", so it may be of interested to those who wobble around like drunken sailors. 

 

https://www.ncbi.nlm.nih.gov/pubmed/28819687 

[[an...]]

I've been in dizzy hell for the last several weeks but mine seems to be coming from my eyes somehow. Visual vertigo is the closest I can describe it. If someone walks past me fast, my body feels like it will fall in the opposite direction. If someone closes a curtain in front of me, my brain wants to go in that direction. My night vision is still horrible so I feel like I'm drunk trying to walk at night. Anyone else feel like their eyes are causing some of it. Maybe it's just my brain I don't know.

[[La...]]

Hi ang1111,

While I don't have that particular thing going on, I can say that vision is one-third of balance. The other two parts are proprioception (your sensation of your body in space/on the ground) and vestibular. All three parts have to be giving the same messages at the same time, but if one of them isn't, then you can feel dizzy. The benzos can affect any of those three things during withdrawal. I used to have a lot more vision issues, but that passed, and I'm guessing it will for you too. As long as you've had your vision checked by a doctor and all is well, then it's just part of the benzo beast.

 

I saw a lot of eye doctors at the beginning of my dizziness to ensure that nothing was wrong -- optometrist, opthalmologist, neuro-opthalmologist (very specialized) -- and in the end, everything was determined to be A-OK. I was relieved....but still dizzy.

 

Hang in there, ang! Take good care. 

 

 

[[La...]]

Hey Dizzy Buds,

If you need a boost today, please read this wise and wonderful Success Story:

 

http://www.benzobuddies.org/forum/index.php?topic=187132.0 

 

I hope everyone is doing okay. Remember: "Weebles wobble but they don't fall down!"

 

[[an...]]

Thanks Lapis2.

 

 

Yes I've been checked but not to all those same doctors as you.

[[Be...]]

I fall down.

[[jj...]]

Hey dizzy buddies. I was posting here for a bit, but haven't been on this thread for a while. Just wanted to give you all some good news and let you know that after 13 months of my boatiness returning, it's mostly cleared up. Hopefully it will happen for all of you too soon.

[[Ko...]]

Hi Dizzy Buddies,

 

I'm now in my 45th month, unbelievable and still dizzy. I really only have 3 symptoms left. The worst is the boatiness that runs from a 6 to a 9 depending. The other two are burning shins and sleep problems.  I had the sleeping issues before, that's how I ended up taking a benzo ( Tamazepam).

 

I went to another neurologist that specializes in movement problems like people with Parkinson's. They spent over an hour with me putting me through a variety of tests. Of course I tested normal

except for the drunken sailor walk.  I think they believed that this could be caused from withdrawal.

They wanted to try to find something to help me.  The first suggestion is to take gabbapentin. Starting with a low dose of 100mg and working up to 900 mgs over a 2 months time. I'm vary wary of following this recommendation because of all the side effects I've read about.  They claim this method

has helped some people. Seems odd that a drug that can make you dizzy can help with dizziness. I'm still debating with myself about wether to try it or not.  The next drug they suggested was Remeron.

It's an antidepressant. They think if the seritonin and other neurotransmitters are readjusted that might solve the problem. Finally, if those don't work then try another benzo.

 

Needless to say I feel like a guinea pig.  They have never treated someone in protracted withdrawal.

So, I don't know what to do.  I will say that drugs can be miracle workers, but I'm very scared of them.

 

I do want to report something else. I developed a bad rash that appeared on the torso of my body. Don't know what caused it. Very itchy, so went to urgent care. The doctor prescribed Prednisone

I've taken it for 2 days and I noticed that it took away the burning pain in my legs and I felt a little more in balance.  Weird huh?  I think it's helping the rash too.

 

Love to hear your opinion about this.

 

Thanks,

Korbe

 

 

[[La...]]

Thanks Lapis2.

 

 

Yes I've been checked but not to all those same doctors as you.

 

ang, I'm glad you've had things checked out. No need for extra checks unless you're really concerned that something's wrong. It's most likely part of  withdrawal. I was thinking about how many of us are affected by the visual over-stimulation that's caused by supermarkets, bright lights, etc. It's quite common, so I'm guessing that's the same kind of thing that you're experiencing. Just too much activity. I still can't watch certain kinds of things online.

 

Take good care, ang, and I hope it passes soon. 

[[La...]]

I fall down.

 

Hey Becks,

Are you using any sort of mobility aid, e.g. a walker?

[[La...]]

Hey dizzy buddies. I was posting here for a bit, but haven't been on this thread for a while. Just wanted to give you all some good news and let you know that after 13 months of my boatiness returning, it's mostly cleared up. Hopefully it will happen for all of you too soon.

 

Woohoo! Thank you so much for coming back to let us know, jjrosk! That's wonderful news! That's exactly what people around here need to know! Did it leave gradually or suddenly? Is there anything that you can tell us about it that you think would be helpful?

 

I'm so happy for you! Enjoy life on solid ground.

[[La...]]

Hi Dizzy Buddies,

 

I'm now in my 45th month, unbelievable and still dizzy. I really only have 3 symptoms left. The worst is the boatiness that runs from a 6 to a 9 depending. The other two are burning shins and sleep problems.  I had the sleeping issues before, that's how I ended up taking a benzo ( Tamazepam).

 

I went to another neurologist that specializes in movement problems like people with Parkinson's. They spent over an hour with me putting me through a variety of tests. Of course I tested normal

except for the drunken sailor walk.  I think they believed that this could be caused from withdrawal.

They wanted to try to find something to help me.  The first suggestion is to take gabbapentin. Starting with a low dose of 100mg and working up to 900 mgs over a 2 months time. I'm vary wary of following this recommendation because of all the side effects I've read about.  They claim this method

has helped some people. Seems odd that a drug that can make you dizzy can help with dizziness. I'm still debating with myself about wether to try it or not.  The next drug they suggested was Remeron.

It's an antidepressant. They think if the seritonin and other neurotransmitters are readjusted that might solve the problem. Finally, if those don't work then try another benzo.

 

Needless to say I feel like a guinea pig.  They have never treated someone in protracted withdrawal.

So, I don't know what to do.  I will say that drugs can be miracle workers, but I'm very scared of them.

 

I do want to report something else. I developed a bad rash that appeared on the torso of my body. Don't know what caused it. Very itchy, so went to urgent care. The doctor prescribed Prednisone

I've taken it for 2 days and I noticed that it took away the burning pain in my legs and I felt a little more in balance.  Weird huh?  I think it's helping the rash too.

 

Love to hear your opinion about this.

 

Thanks,

Korbe

 

 

Hi Korbe,

I understand your hesitancy when it comes to medication. All of the medications that you've listed have dizziness as a possible side effect, and they all affect the neurotransmitters. In my opinion, it's a big risk to try an experiment on your body when there's so little known about the effects. I, too, would feel like a guinea pig. Actually, I feel like we've already been guinea pigs, in that the benzodiazepines were never meant for long-term use, yet our doctors continued to prescribe them to us against the known recommendations.

 

Here are my thoughts on it:

Do a bit of research in the "Other Medications" section here on BB, and see what people have written about their experiences with the medications. I know that some people do okay with low doses of Remeron for sleep, but if the suggestion is for a higher dose, the outcome might be different. If they're talking about "balancing neurotransmitters", that would be just about impossible to monitor. How would anyone know what's happening at any given time in terms of levels in the brain? They couldn't. Would that make you more anxious? Would you feel comfortable taking the risk?

 

My deep feeling is that by taking benzodiazepines for so long, we have altered our neurotransmitters, receptors and vestibular systems. In order to heal, we need time. We need to allow the body to normalize without interference. If we keep adding new factors -- factors that have unknown effects in any given person -- we may lengthen the period of time that we need to heal.

 

Of course, there's always a chance that these medications could help you, but I think you should do a lot of research and a lot of soul-searching before agreeing to something. Whatever it is, you'd have to be able to live with the uncertainty about the outcome.

 

Back when I was on clonazepam, I was prescribed Cymbalta for pain. I had a terrible reaction to it -- severe diarrhea -- and the dizziness began while I was on it. I tapered off it, but the dizziness continued. A number of months later, a doctor suggested I try an SSRI to see if it would stop the dizziness, so I took Prozac. Big boo-boo. Not only did it not stop the dizziness, but it likely complicated my whole situation. I did a clonazepam taper, and then 10 months later, I did a Prozac taper. The interaction of the various drugs appears to have had a bad effect on me, and I just regret having tried them. I wish I'd known more.

 

I hope others will weigh in with their thoughts as well. What I've stated here is my opinion and my experience only.

 

Take care, Korbe, and please let us know what you decide and how you're doing.

[[jj...]]

Hey dizzy buddies. I was posting here for a bit, but haven't been on this thread for a while. Just wanted to give you all some good news and let you know that after 13 months of my boatiness returning, it's mostly cleared up. Hopefully it will happen for all of you too soon.

 

Woohoo! Thank you so much for coming back to let us know, jjrosk! That's wonderful news! That's exactly what people around here need to know! Did it leave gradually or suddenly? Is there anything that you can tell us about it that you think would be helpful?

 

I'm so happy for you! Enjoy life on solid ground.

 

It's been very gradual. From July 2017 to around November or December 2016 my dizziness and paresthesia was gradually getting worse. I was pretty terrified at the time because I didn't know where it was going to bottom out. It got to the point where it didn't matter if I was walking, standing, sitting or lying down, I always felt like I was falling. It stayed at it's worst point until maybe around March or so and then started noticing times where it was a little better and kept gradually improving until now. I mean, don't get me wrong, I'm not ready to write my success story or anything, but at least I don't feel like like I'm constantly tilting, tumbling or leaning.

 

As far as what helps... I don't think anything does. I've walked every day, and I've gradually built up an exercise routine and I do quite a bit of breathwork and relaxation practices so maybe that's had some kind of effect, but it's just so hard to know. Stress always makes it worse, that's pretty clear. My pet theory is that some kind of sustained daily movement aids in the CNS recovering, but really, I just don't know.

[[an...]]

Hi Dizzy Buddies,

 

I'm now in my 45th month, unbelievable and still dizzy. I really only have 3 symptoms left. The worst is the boatiness that runs from a 6 to a 9 depending. The other two are burning shins and sleep problems.  I had the sleeping issues before, that's how I ended up taking a benzo ( Tamazepam).

 

I went to another neurologist that specializes in movement problems like people with Parkinson's. They spent over an hour with me putting me through a variety of tests. Of course I tested normal

except for the drunken sailor walk.  I think they believed that this could be caused from withdrawal.

They wanted to try to find something to help me.  The first suggestion is to take gabbapentin. Starting with a low dose of 100mg and working up to 900 mgs over a 2 months time. I'm vary wary of following this recommendation because of all the side effects I've read about.  They claim this method

has helped some people. Seems odd that a drug that can make you dizzy can help with dizziness. I'm still debating with myself about wether to try it or not.  The next drug they suggested was Remeron.

It's an antidepressant. They think if the seritonin and other neurotransmitters are readjusted that might solve the problem. Finally, if those don't work then try another benzo.

 

Needless to say I feel like a guinea pig.  They have never treated someone in protracted withdrawal.

So, I don't know what to do.  I will say that drugs can be miracle workers, but I'm very scared of them.

 

I do want to report something else. I developed a bad rash that appeared on the torso of my body. Don't know what caused it. Very itchy, so went to urgent care. The doctor prescribed Prednisone

I've taken it for 2 days and I noticed that it took away the burning pain in my legs and I felt a little more in balance.  Weird huh?  I think it's helping the rash too.

 

Love to hear your opinion about this.

 

Thanks,

Korbe

 

It's my understanding that prednisone acts on gaba so that's why you felt better

 

Remeron and gabapentin both have their own side effects and own withdrawal syndromes.

 

I also agree with Lapis2 but wanted to add that what i'm hearing in your comment is that your gut is saying no. Listen to that. You sound extremely hesitant and worried you are being treated like a guinea pig. I think theres a lot of wisdom in that.

[[Be...]]

Lapis, I don't use a walker because my problem is caused by my wrecked CNS.  I have body collapse syndrome where I'll just slump to the floor.  It's not even so much a balance issue.  My brain isn't holding me up and I just crumple to the floor.  It's almost like blacking out.  I was diagnosed with Memory Impairment and Amnesia by the doc last spring.  I have early onset dementia.