Alternatives to benzos

[DizzyGirls]

As you all know, my daughter has had a real hard time these last few years.  She has battled vertigo for 10 years now, the anniversary of the beginning of it just a couple of weeks ago.  Her pain doctor, who prescribes her diazepam, is backing her off of it because he doesn't like her taking it.  It has been the only thing that has controlled her vertigo the last couple of years, in addition to her promethazine.  Does anyone have any ideas of a good substitute that would control vertigo other than benzos.  She has really, really been struggling with it the past few weeks and she's scared to death.   She had to go to the ER a few days ago because of it.

[StayAtHomeMom]

I take a half of a dramimine pill for my dizziness. It is over the counter for motion sickness. I know vertigo isn't the same thing as being dizzy but maybe something simple may help. 

I am sorry I couldn't offer better advice as I don't have vertigo, but my dizziness used to be pretty bad and the dramimine was the only thing that helped. 

I hope some of her symptoms ease, I know she has been having a rough couple of months. Positive thoughts her way. 

[Pistol]

Have they tried meclizine?

[DizzyGirls]

Hi StayatHomeMom and Pistol - She takes meclizine about 4 times a day.  Used to, that was all she needed until 2014 and she had a busy year (graduation, trying to go to college, etc.) and it just took off.  That's when the benzos, ativan first, then switched to diazepam.    StayAtHomeMom, you might have a thought.... dramamine is slightly different than meclizine.   Meclizine is, well, meclizine, and dramamine is diphenhydrinate (a cousin to benedryl).  We used to use benedryl in the early stages of her vertigo, when she was 12, but it got to where it wasn't quite right.  What's weird is that several neurologists have commented on using a benzo for vertigo and that they had never heard of such a thing.  Her PCP was the one that first put her on it, and her chiropractor confirmed the other day that a benzo or benedryl are two of the top meds for vertigo (along with meclizine, dramamine, and phenergan).   I would love to get her off the benzo, because it's really sedating and there seems to be a universal dislike for the med all of a sudden and I'm getting really frustrated at trying to maneuver around the medical field to get her prescription.  With dysautonomia, she has problems with sensory overload (most likely the trigger for the vertigo) and I'm guessing that's why the diazepam works well.  Also, with the change of seasons, it is a particularly hard time for her. 

[StayAtHomeMom]

I have noise sensitivity and for a while it would set off dizziness and I would take the 1/2 dramimine and it would take care of it fairly quickly, without the tiredness. Thankfully the dizziness is mostly gone now. Noise will set off my HR and make me fuzzy brained but not too often. 

[yogini]

 Has she seen an inner ear doctor for the vertigo?  I have been told vertigo (spinning) is separate from the dizziness caused by POTS. I think a specialist in treating that could let you know what the other medications are.  I had severe dizziness from POTS as my worst symptom, but my docs never prescribed a benzo.  My POTS dizziness definitely gets worse when the seasons change.

[Gerbera]

@DizzyGirls

This is going to sound all backwards, but here goes:

I have an Rx of Xanax 0.5 mg x4 per day and I couldn't possibly take one when I am attempting to do things upright walking around because my dizziness would double (I know, I've tried it) so it seems odd to me that it's Rxed for dizziness.

Second, I have been getting progressively worse with fatigue, dizziness and mental clarity so I got an Rx of Ritalin from my shrink. (I"ve been on it before) It helps me a lot with those symptoms and I don't have any side effects that are bothersome. Here's the rub: if you google Ritalin side fx everyone concurs it *causes* dizziness. Go figure. Everyone's different. I think Ritalin has a bad rap since it was so over prescribed for a while... I srsly think it is too strong for school kids to take for ADHD which I have and Ritalin does really work... it's just the side effects that most people encounter would be devastating over the long term for a teen... just my opinion.

Hope you find something that works.

[Pistol]

@Gerbera - I too take Ritalin for POTS related fatigue and brain fog (I was also diagnosed with ADD) and it has really worked well for me. I am not sure if it would help for dizziness though.  - @DizzyGirls - wow, all the meds you list she takes for her dizziness are knock-outs! How can she function on them? -- I would give the Dramamine a try and I hope it works!!!! How are her afternoon episodes of nausea?

[DizzyGirls]

@yogini- She's been to quite a few ENTs and they never know what to do with her.  I won't let them do some of the testing because, typically, those tests are done to provoke vertigo in order to see if they can tell what side is worse, etc.  She always has nystagmus (which her PCP can see).  She's tried the Epley maneuver, and all the other related ones, but they make her pass out.  That's not helpful!  It's definitely true vertigo.  Sometimes she has POTS dizziness, but she's usually very good and differentiating between the two.

@Gerbera- That's interesting!  I think it probably has a lot to do with what is actually the underlying cause of my daughter's vertigo.  I have two daughters that have unrelenting vertigo 24/7.  Both came on around puberty and it also runs in my side of the family.   Mostly we manage it to a degree and they both respond to either lorazepam or diazepam to control it.  There are a lot of triggers that make it worse.  It's definitely a tightrope walk, that's for sure.  I have a hunch that it is autonomically mediated.   I know what you mean about the meds.  A lot do say "causes dizziness or vertigo" and those are the very ones that are used to treat it, and they work.  Go figure!!

@Pistol- Her strange afternoon nausea seems to be settling some.  Thanks for asking!   She had her trigger point injections last Monday and it seemed to help some of the strange things that were happening.  The only thing that is hanging on are these muscle spasms (from her multiple spinal fusion) that are closing off her airways, her stomach, her ability to swallow and speak.  Had to go to ER the other day because she couldn't breathe AND had really bad vertigo.  He said it was just muscle spasms.  Gave her some good meds, let her sleep some, and sent us on our way.  It worked, so now we are trying melatonin to help with her muscle spasms.  It makes you sleepy, but in doing so it calms her body and the spasms down.  Oddly enough, it's helping.  Not a cure all.  That and a good heating pad!  I think the reason she can function on the knock out meds, is that she has MCAD, too and has always needed a lot of antihistamines to keep things in check, or she itches terribly and gets hives.  So overwhelming, isn't it!?

Thanks for all of your help!

[yogini]

5 hours ago, DizzyGirls said:

@yogini- She's been to quite a few ENTs and they never know what to do with her.  I won't let them do some of the testing because, typically, those tests are done to provoke vertigo in order to see if they can tell what side is worse, etc.  She always has nystagmus (which her PCP can see).  She's tried the Epley maneuver, and all the other related ones, but they make her pass out.  That's not helpful!  It's definitely true vertigo.  Sometimes she has POTS dizziness, but she's usually very good and differentiating between the two.

 

If it's a true vertigo with nystagmus, then the treatments that POTS patients use for dizziness might not be helpful.  There might be other forums or resources for information on vertigo. And, even though it might be very painful for her, it might be worth doing some of the testing as that would help you figure out the most effective treatment.  

[Gerbera]

On 10/14/2018 at 3:34 AM, Pistol said:

@Gerbera - I too take Ritalin for POTS related fatigue and brain fog (I was also diagnosed with ADD) and it has really worked well for me. I am not sure if it would help for dizziness though. 

@Pistol - It's 6 of one, half dozen of the other ;-) for me, Ritalin helps with dizziness in that my mind is clearer, more focussed and I think to put it exactly, it doesn't clinically get rid of dizziness but I am more concentrated on being mindful etc. while I move about and in that way it helps... and all in all, I feel less dizzy. That being said, this aft I had rampant dizziness and my bp went to 84/58... and I thought ***...

 

[jeff_jefferson2]

Being on Xanax for long term use is awful. Tapering off the drug, is the absolute worst. Has she ever had any diagnosing for the vertigo? I would suggest a VNG test or meeting with a vestibular physical therapist.