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

[[La...]]

Hi Mendozac,

Have you seen your doctor lately? It would really be best to get checked out properly. I don't think anyone around here can weigh in what you've just asked.

[[Me...]]

Lapis that friend of yours that had the same problems as myself whats her name id like to read into her progress?

[[La...]]

It's Fallingstar, although I don't think she's been posting too much lately. She had a lot of tachycardia when she stood up, and I believe it's a lot better now.

 

 

[[...]]

Hello! I used to post on the board periodically, and read it religiously. It’s been about a year since I felt mostly better, 8-9 months of being totally free. It took me a solid two years to heal from ambien use for 8 months. Even though this isn’t specifically dizziness related, I’m posting here because those were my main symptoms (along with relentless fear).  My issues were started and compounded by very complicated thyroid disease. My doctor finally is recommending a total thyroidectomy. I’m terrified of the drugs because of my horrific withdrawal....that most doctors still poo poo. I’m wondering if anyone has had surgery? I’d say I’m healed, maybe 98-100%. It’s hard to tell because some of my swinging thyroid symptoms mimic withdrawal. Every once in a while I feel a little boaty, but then it’s better. If you know of anyone who has had surgery, how’d it go? I haven’t even taken vitamins or Advil since withdrawal, all pills scare me. I’m thinking I’ll tell them I’m allergic to benzos and want to do it narcotic free. Any other suggestions? Thank you! I also apologize for not coming back as much as I swore I would. I never thought I’d get better. It took two solid years of never having a window completely. Until my thyroid went nuts a month ago, I was a school garden teacher and reclaimed my life. I’m hoping this surgery can help! Take care. E

[[La...]]

Hi erp!

Good to hear from you! And I'm so glad to hear that you're doing so much better with respect to the dizziness. Everyone around here LOVES to hear such good news stories, so I appreciate that you posted here.

 

As far as surgery goes, I do know that many people post on other boards about that, so you might want to post elsewhere -- maybe under the general health category or other medications. You should definitely discuss your concerns with your surgeon and the anesthesiologist, since you have the right to discuss what options there are. Others have asked for "No Benzodiazdepines", and I think it's been fine for them, i.e. because there are other options. Try to search here on BB to see what others have experienced.

 

And hopefully, anyone here on the dizziness thread who is reading this can weigh in with his/her experiences too.

 

I wish you well with that! Take good care, and have faith in your body's ability to heal. It has obviously done that fabulously well from the benzo experience. 

[[Ma...]]

Hello! I used to post on the board periodically, and read it religiously. It’s been about a year since I felt mostly better, 8-9 months of being totally free. It took me a solid two years to heal from ambien use for 8 months. Even though this isn’t specifically dizziness related, I’m posting here because those were my main symptoms (along with relentless fear).  My issues were started and compounded by very complicated thyroid disease. My doctor finally is recommending a total thyroidectomy. I’m terrified of the drugs because of my horrific withdrawal....that most doctors still poo poo. I’m wondering if anyone has had surgery? I’d say I’m healed, maybe 98-100%. It’s hard to tell because some of my swinging thyroid symptoms mimic withdrawal. Every once in a while I feel a little boaty, but then it’s better. If you know of anyone who has had surgery, how’d it go? I haven’t even taken vitamins or Advil since withdrawal, all pills scare me. I’m thinking I’ll tell them I’m allergic to benzos and want to do it narcotic free. Any other suggestions? Thank you! I also apologize for not coming back as much as I swore I would. I never thought I’d get better. It took two solid years of never having a window completely. Until my thyroid went nuts a month ago, I was a school garden teacher and reclaimed my life. I’m hoping this surgery can help! Take care. E

 

.. you can tell them you refuse benzos, normally no problem. A better choice to "explain" would be that you have already reacted paradoxically on benzos - this should scare them to death and they would not try a single one! And always tell them "doctor told me to tell YOU that you do not use benzos" (cause patients are idiots...)

You do not need benzos to get narcotized they only use it to calm people down and its easier for them. Propofol is used without side effects or setbacks normally. I react on anything and it was okey for me. I also rejected to get any benzo or calming med at all.

[[...]]

Thank you for the advice! I’m more afraid of a drug reaction than the surgery itself!

[[La...]]

I've, too, have read about people asking for Propofol, so hopefully that's an option for you. I wish you well with that, erp8! When is the surgery scheduled?

[[Bi...]]

It has been a few weeks since I posted maybe even longer. I talked to my Dr and started back up the low dose of amitriptyline that I had been taking last year before all hell broke loose. About five weeks in or  middle of January I had a solid 1.5 to 2 weeks of very mild lightheadedness and dizziness. Then I had one bad night where I woke up at 3am could never fall back to sleep tried to go to work ended up turning around it was just so bad. Ever since that day it has been a living hell of 9/10 days of lightheaded dizziness and off balance. I have tried to go to work which involves a lot of meetings, not all in which I have to contribute but those make it go to 12/10 and I can't take it. Even if I take an early dose or a rescue dose it seems to do nothing to calm these symptoms. I finally had a chat with my boss about it after weeks of suffering and just working from home. He is understanding but I'm not willing to go further than to say I believe it is medication related. He is supportive but this cant go on for much longer. Prior to starting the amitriptyline I would say most days were a 6/10 and I could at least go to work. Then I had that great window and now it is like a 300ft tsunami wave is hitting me every day. I'm just lost. The wife is stressed because I am the sole income for our family. Sorry for any typos etc. Doing this on my phone in the car as I dread going into the office to try to suffer through a few hours to show my face.

[[La...]]

Hi BigSky,

I'm really, really sorry to hear about how you're doing. I know this symptom can be brutal, since I'm living with it too and I understand. What I'm wondering is why you decided to go back on amitriptyline. Like all of the psychiatric meds, it comes with a possible side effect of dizziness. Taking more medication might lead to more side effects.

 

I'm going to re-post some information about dizziness and medications from the Vestibular Disorders website here, since I think it's particularly relevant:

 

https://vestibular.org/understanding-vestibular-disorders/treatment/vestibular-medication

 

Medication

 

Can Medication Help Me Feel Better?

 

The use of medication in treating vestibular disorders depends on whether the vestibular system dysfunction is in an initial or acute phase (lasting up to 5 days) or chronic phase (ongoing).

 

During the acute phase, and when other illnesses have been ruled out, medications that may be prescribed include vestibular suppressants to reduce motion sickness or anti-emetics to reduce nausea. Vestibular suppressants include three general drug classes: anticholinergics, antihistamines, and benzodiazepines. Examples of vestibular suppressants are meclizine and dimenhydinate (antihistamine-anticholinergics) and lorazepam and diazepam (benzodiazepines).

 

Other medications that may be prescribed are steroids (e.g., prednisone), antiviral drugs (e.g., acyclovir), or antibiotics (e.g., amoxicillin) if a middle ear infection is present. If nausea has been severe enough to cause excessive dehydration, intravenous fluids may be given.

 

During the chronic phase, symptoms must be actively experienced without interference in order for the brain to adjust, a process called vestibular compensation. Any medication that makes the brain sleepy, including all vestibular suppressants, can slow down or stop the process of compensation. Therefore, they are often not appropriate for long-term use. Physicians generally find that most patients who fail to compensate are either strictly avoiding certain movements, using vestibular suppressants daily, or both.

 

As the article states, benzodiazepines are considered to be "vestibular suppressants" in the medical literature, so, as per the section on the chronic phase, they interfere with normal vestibular function, and they're not meant for long-term use. I have found the same info in Ear, Nose and Throat medical textbooks. In fact, years ago, I wrote out a paragraph from one of those textbooks and brought it to my doctor to help explain why I wanted to taper off the clonazepam once I realized it was the thing that was making me dizzy. He gave me the diazepam I requested, and I followed the Ashton Manual taper plan to get off. I realized that the longer I stayed on the medications, the more I was delaying the possibility of letting my vestibular system normalize or "compensate".

 

BigSky, please take good care of yourself and consider carefully what your next step is in terms of the medication.

[[Bi...]]

I decided to go back on as a last resort. I had dose corrected after a severe period where working or even everyday living was a struggle back in Aug. After four months of that increase of 1.5mg v I was not stabilizing. The last thing I did before the summer of hell was a quick taper of the amitriptyline. So my thought was maybe that was helping me more than I realized as I tapered from 20mg v to 6.5 v in a year without severe issues. While I put it off for quite some time it just seemed logical to go back to when things were stable and try at a slower pace going down on the Valium. It seemed to help after about a month and I was feeling pretty good. Then as I said it all went wrong. Because all these meds have time lag it is hard to say. I have now been on the same Valium dose for just under six months. I actually had about an hour this afternoon when it went down to say a 7/10 and I was able to get some work done. But that quickly ended and I'm back to feeling worse. I decided to just take the next two days off and see if anything happens. It also pushes back a meeting where I have to present. I'm just crossing my fingers.

[[La...]]

It's very hard to pinpoint an exact thing that will make symptoms worse on a given day. There's not necessarily any logic to it, from what I can tell. Personally, I've had an every-other-day pattern pretty much from the beginning. It's not dependent on what I take or don't take.

 

The larger question is, of course, whether you can actually keep taking the medication and expect not to be dizzy. It's a vestibular suppressant, so dizziness is often a result of taking it. According to that Vestibular Disorders website, "During the chronic phase, symptoms must be actively experienced without interference in order for the brain to adjust, a process called vestibular compensation. Any medication that makes the brain sleepy, including all vestibular suppressants, can slow down or stop the process of compensation. Therefore, they are often not appropriate for long-term use."

 

So, I was wondering if you're planning to re-start your taper off the medications at any point soon. Could you microtaper? I don't know if it's better or just different than doing a regular taper as per the Ashton Manual, but perhaps it would be a bit less scary. You'd be dropping the dose by a miniscule amount each time, which would be hard to notice. At least you'd be moving forward and getting closer to getting off completely so that your brain can heal.

 

 

[[Bi...]]

I do want to start again but I was trying to get to a point of relative stability so I can continue to work and live life as I go through this. I am not sure anyone for sure knows but my understanding was our brains heal as we go down because there is less benzo in the system it can slowly ramp back up. There are people on both sides of that issue.

 

I have contemplated trying the micro taper but it seems a bit overwhelming and a bit more difficult. I have previously talked to my Dr. About switching to the liquid version when I got too low to really break up the pills. I could start that earlier I suppose.

 

It is just so frustrating because I was doing pretty well I feel like all the way down to 6.5 then it blew up. I'm tired of doing a crap job at work and missing many things my son is doing. I know the end goal is off it all but I also don't want to miss everything for years by going too quickly. My body has always been very sensitive to medication and doesn't usually require the same doses a "normal" person would. I dunno, this was a bunch of different topics and rants I know. But I feel like it helps to get it out.

[[La...]]

Yeah, the challenging thing is that everyone is different when it comes to these things, so no one can say for sure that this way or that way is best right now. I'd love to see studies on that, but I just think that genetics play a big role. Whether we can become un-dizzy while still taking a vestibular suppressant medication was the issue for me back when I found out how the meds were causing my dizziness. It didn't make any sense to me to taper too slowly because I wanted this stuff out of my body. Still, though, I did a fairly slow taper (8 months total, with a hold in the middle due to introduction of Prozac -- big boo-boo). Whether a microtaper would have had different results is anybody's guess.

 

This Vestibular Disorders website is saying that the brain cannot really normalize (in terms of dizziness, that is) while one is still taking these types of meds. In the benzo community, people say that the brain is healing as you drop the dose. Again, there's no objective test for that. Not everyone gets dizziness as a symptom, though, so some people can be fairly functional during a taper. Others, not. It's such a crap shoot! I know how frustrating it is not to have answers. I think we each have to figure out for ourselves which way makes sense and then take action. I wasn't on BB when I did my taper, so I just plowed on through with the help of the Ashton Manual.

 

Maybe you can read some of the Success Stories and see what others did. Those people are obviously out of the woods when they write their stories. They're an excellent resource for people who are in the trenches. They can provide ideas, information and that all-powerful resource, hope! Hope...it's absolutely necessary for this rocky ride...plus determination and a huge dollop of resilience.

 

 

 

 

[Guest [Pi...]]

Hello!

I'm new-ish to the site, doing a relatively quick taper that doesn't seem very quick at all to me. I have had unexplained dizziness for ages and ages which got worse and worse and has been horrible for the last 2 years: vertigo, pendulum-head, swing-head, boat-walking, you name it. Not one doctor or specialist identified Ativan as the culprit, though I informed all of them I was on it for years. Not one single person suspected it at all because it was a 'low dose'. Super pees me off to think about now, all the wasted years making myself sicker. But I know I have to be positive and hope I can actually recover. I feel I won't recover until I'm off this sh*t and that's why I don't want to slow my taper too much. I think I will feel lousy for awhile no matter what I do. The one thing I'm finding helpful is to see the 'bad days' and intense dizzy spells as a healing process, like a sign that the vestibular system is trying to right itself. I know if I keep moving, even if I have to use a cane or something, I can usually move through the symptoms after a while and if I sit still or lie in bed, it doesn't actually help overall.

 

I am definitely worried that I will never go back to 'normal', because it's been years of damage, but that's not a very helpful thought, so trying not to go there if I can help it.

 

Cheers,

 

Pickl

 

[[Fp...]]

Have you tried the Epley manuever to insure it's not an inner ear issue. My wife and father used this technique to relieve / cure their vertigo. Obviously, this will not help if it is benzo induced, but it may be worth a try to eliminate what may or may not be causing the dizziness .

[[La...]]

Hi Pickl,

Thanks for dropping in to share your story. I, too, was told I was on such a small dose when I asked if my clonazepam could have been the cause of my ongoing dizziness. It's such an insane response when you look at the medical literature and find that one of the top known side effects (not to mention withdrawal effects) of taking benzodiazepines is dizziness and balance issues. Whether the dose is large or small, the risk is still there. Anyway, good for you for taking steps towards getting off it! And good for you to stay mobile! Yes, even if you need a cane or a walker, it's important to stay as functional and strong as you can under the circumstances.

 

I think you're doing the right things, Pickl. Keep it up! 

 

 

[[La...]]

Have you tried the Epley manuever to insure it's not an inner ear issue. My wife and father used this technique to relieve / cure their vertigo. Obviously, this will not help if it is benzo induced, but it may be worth a try to eliminate what may or may not be causing the dizziness .

 

It's best to get checked by an qualified health practitioner (doctor, physiotherapist, etc.) who knows how to check for signs of BPPV and when it's appropriate to use the Epley maneuver. Personally, I had lots of testing, and I don't have the type of dizziness that's treated with the Epley maneuver. However, we have had people on this thread who needed that type of treatment for vertigo (e.g. Benign Paroxysmal Positional Vertigo or BPPV).

[Guest [Pi...]]

I had vestibular testing done which was 'inconclusive' as was any testing I had done. Had Epley done. Nothing helped. In retrospect I can see that the vertigo would happen with dose reduction but I didn't put 2 and 2 together and neither did anybody else. I saw multiple specialists and didn't quite fit into any mold. It is amazing that not one of them questioned the Ativan, but they just didn't. I'm as sure as I can possibly be that it was years of Ativan and tolerance w/d that have caused all my balance issues. I would have never believed it until a new doc forced me to start w/d and all of it got worse and then it all became very clear.

[[La...]]

Hi Pickl,

It sounds like we've had very similar experiences. I saw 10 different doctors before it became clear that it was the medication. The last doctor did, indeed, confirm it. By then, I'd found all kinds of BB posts describing "floaty boat dizziness", and I thought, "Wow, this is unbelievable! They're all experiencing the same thing I am, and they're all on -- or getting off -- benzodiazepines!" Crystal clear.

 

 

[[Me...]]

Hi so i ended up going to er last night i cant stand the pains in my legs the extreme fatigue and the lightheaded dizziness! The only thing that came out was my haemoglobin is at 11... And potassium is slightly low can anyone relate to blood test on hemoglobin 😧 i cant believe im back in acute i just hate this

[[La...]]

Hi Mendozac,

I've certainly dealt with low hemoglobin before, but mine has normalized now, thanks to Proferrin, a low-dose heme (animal) source of iron. It can take awhile to get one's level up (i.e. a few months), but Proferrin has worked well and without any major side effects, in my experience. I'm sure there are other types of iron supplements, so you could always check with your doctor to see what s/he recommends. You should hopefully be able to normalize your potassium by eating enough healthy food.

[[Me...]]

Lapis where can i get that from? My rbc is a lil low too im just pa mess

[[La...]]

It's an American product, but I've been able to find it in a pharmacy here in Canada. Maybe you can google it to see how you can get it online. I recommended it to another American BB, and she was able to order it without any issue there. Check the comments too, and you'll likely find that most people have positive things to say, e.g. no stomach issues, etc. My mom took it for low hemoglobin as well, and it worked well for her. I've had low hemoglobin (yes, and low red blood cells and low hematocrit), and it has been helpful.

[[Me...]]

Ok will defitnetly look into this thank u!