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

[Guest [...]]

Lapis,How are you doing today?A lighter off balance day I hope?

 

I pray everybody is having an easier weekend!

[[La...]]

Thank you lapis. I'm afraid my brain is stuck on this boat. The dizziness is unbearable.  I walk like I'm in a play house. My brain and body don't seem to know where things are. I feel like I'm floating, sinking, on a boat,, tipping falling, awful.  Do you know if anybody's dizziness was like that they were covered?

 

Well, Brussellsprout, you've just described what many of us are feeling! Have you checked the first page of this thread? I put up a list of descriptive words that BBs use when talking about their dizziness, and there are many water references. Yes, I agree it's awful. It's just plain mean! But people DO get through it, and for some, it doesn't last too long. We're all different and of course, and it's impossible to predict how long it might last. I know that adds to the anxiety for everyone, but it's just the way it is. Taking medication to try to cover it up can actually make it worse. If you check out page one of this thread, have a look at some of the links there, and in the following few pages. There's lots of info there.

 

 

[[Br...]]

Thank you.  I hadn't taken a klonopin for 60 days  according to the Mal de debarquement  group, Klonopin actually helps with the symptoms. So I tried it for the past day at .25 mg and it seems to make things a bit worse. So, does this mean that I have to restart the whole clock? Has my healing in the last 60 days of being a Klonopin now completely undone?

[[La...]]

Lapis,How are you doing today?A lighter off balance day I hope?

 

I pray everybody is having an easier weekend!

 

Hi 2200,

It's a 7 for me today, which is better than yesterday's 8. I tried to get through it, but around dinnertime, I kind of lost it and cried most of the rest of the night. I had about three hours of sleep last night, so I've been up since 3:30 a.m. Definitely not fun!

 

And how are you?

 

I'm munching on some delicious cherries right now, and I have to say they're awesome! Wow! Have you had any? Every time I eat them, I remember a woman I used to know who ate them like "small fruit" -- meaning, she'd take a little bite out of it like it was a peach or something. It was pretty cute! I just throw the thing in my mouth and enjoy the flavour explosion! Yummo! Nutritious and delicious.

 

Anyway, that's my off-the-boat excitement for today. Cherries. Now back to your regularly scheduled program....

[[La...]]

Thank you.  I hadn't taken a klonopin for 60 days  according to the Mal de debarquement  group, Klonopin actually helps with the symptoms. So I tried it for the past day at .25 mg and it seems to make things a bit worse. So, does this mean that I have to restart the whole clock? Has my healing in the last 60 days of being a Klonopin now completely undone?

 

Brussellsprout, please read that first page I mentioned! Benzodiazepines are vestibular suppressants and interfere with the brain's ability to normalize balance. They're not meant for long-term use. You don't have a signature attached to your profile, so I don't know what you're taking, for how long, etc. If you can fill that in, it would help us all to help you.

 

[[Br...]]

Sorry. I took .25 mg klonopin for 2 weeks, then .125 a week later. That was 60 days ago. I just took the .25 mg yesterday.

[[La...]]

Ah, okay, I got it! But still, it would help to see your history of benzo use, so if you can add a signature,  that would be much appreciated.

 

Anyway, what you've just described is a "rescue dose', and I doubt it would set you back all the way, but it's really impossible to know. Ashton has written about people taking a small dose of a benzo for a dental or medical procedure without ill effects, so it's not necessarily a huge issue. Try to just move forward from here. You took it, and it's done now. Just look to the future.

 

How long were you on benzos all together, which what and at what dose? How did you taper? Or did you "cold turkey"? These are things you can put in your signature that will make the picture clearer for everyone around here.

 

My dizziness varies in levels from a 6 out of 10 to a 9 out of 10. And once I went off benzo, I never took another. So, your one dose yesterday may or may not be the reason for your increased dizziness today. Still, just let yourself off the hook and know that you're on the right path again.

 

[Guest [...]]

Lapis,How are you doing today?A lighter off balance day I hope?

 

I pray everybody is having an easier weekend!

 

Hi 2200,

It's a 7 for me today, which is better than yesterday's 8. I tried to get through it, but around dinnertime, I kind of lost it and cried most of the rest of the night. I had about three hours of sleep last night, so I've been up since 3:30 a.m. Definitely not fun!

 

And how are you?

 

I'm munching on some delicious cherries right now, and I have to say they're awesome! Wow! Have you had any? Every time I eat them, I remember a woman I used to know who ate them like "small fruit" -- meaning, she'd take a little bite out of it like it was a peach or something. It was pretty cute! I just throw the thing in my mouth and enjoy the flavour explosion! Yummo! Nutritious and delicious.

 

Anyway, that's my off-the-boat excitement for today. Cherries. Now back to your regularly scheduled program....

 

 

 

Oh yummo,the wonderful cherries!!I had some of the Rainier cherries a couple of weeks ago,and they were awesome!I wolfed down so many,I am ashamed to tell you!I am onto peaches now,and they taste like candy!I can't wait for fall,and all the fresh apples!

 

I'm so glad it is a #7 for you today and not an #8!

 

A #7 and cherries makes for a much more tolerable and happy day don't you think!

 

I am about a #2 today,and feeling very good!I don't know what happened,but I will take it and run with it!

 

Had a bad wave yesterday with the anxiety,dizziness and head stuff,only to leave after about 20 minutes.I was so happy!I want more days like this,please,please,please.......... 

[[Br...]]

Lapis. I updated my profile. What's so interesting here is the crossover. I had been diagnosed with vestibular  migraine which was just visual dizziness. I took nortriptyline for that and gave up on it too soon and started Effexor. My strange de realization sensation started on the Effexor . Then I took a long trip to Chicago and felt the ground kind of moving under my feet. I thought tha may be MDS and the doctor gave me Klonopin. I only took it for two weeks but did not have the boat feeling anymore. Then, after coming off all of the meds, the boat feeling returns.  Sure hope the rain doesn't heal from these things. Afraid your story makes me very concerned as this is quite difficult.  I have a four-year-old and two-year-old I don't know how much longer we can go on like this

[[La...]]

Brussellsprout,

Both benzos and antidepressants can cause dizziness, so it looks like you had a mixture of those things. SSRI dizziness is pretty much the same sensation as benzo dizziness in terms of the sensations, so it might not be a case of Mal de Debarquement that you have. It may just be from the meds. There was a great study on MdDS not too long ago, and there's an excellent website by a doctor in NYC who treats people with it. If you want, I can track that info down for you. We all noted the similarities between the two types of dizziness (i.e. benzo and MdDS).

 

I took both benzos and an SSRI, so I got a bit of a double whammy. Some people are fine with all of these meds, of course, and some aren't. It's just such a crap shoot.

 

My suggestion would be to stay off the meds that are questionable, and just take it one day at a time. It might all be gone tomorrow! Stay as positive as you can, and hopefully, it won't last too long. 

[[La...]]

One other thing, Brussellsprout, and that is that you didn't take any of the meds for very long. That's a good thing! It's not always a direct line between length of time the drug is taken and the length of time the withdrawal lasts, but I'm guessing it's an advantage. I took my medications for quite some time, so there were cumulative effects. You likely have much of less of that. I'm hoping that you won't have to deal with all of this for too long. Fingers crossed!

 

How did they diagnose the vestibular migraine? Is there a test for that? Or is it by symptoms? The symptoms from these various things can be similar, so the doctors need to be very careful about taking histories, doing testing and putting pieces of a puzzle together. Do you have a sense for yourself of what you're dealing with? Medication side effects? MdDS? Vestibular migraine? Derealization?

[[Ko...]]

Hi Korbe,

Valerian, along with some other herbs, are on the list of Positive Allosteric Modulators for the GABA-A receptor, as are the benzodiazepines. So, while it may be effective, that effectiveness may be problematic for people who are trying to avoid the problems caused by benzos. I'm not sure how strong valerian is compared to the benzos, but if you're at all concerned, it might be best to avoid such things. What about melatonin or tryptophan or some other non-GABA-related thing?

 

Here's a wikipedia excerpt:

 

In pharmacology, GABAA receptor positive allosteric modulators are positive allosteric modulator (PAM) molecules that increase the activity of the GABAA receptor protein in the vertebrate central nervous system.

 

GABA is a major inhibitory neurotransmitter in the central nervous system. Upon binding, it triggers the GABAA receptor to open its chloride channel to allow chlorine ions into the neuron, making the cell hyperpolarized and less likely to fire. GABAA PAMs increase the effect of GABA by making the channel open more frequently or for longer periods. However, they have no effect if GABA or another agonist is not present.

 

Unlike GABAA receptor agonists, GABAA PAMs do not bind at the same active site as the γ-Aminobutyric acid (GABA) neurotransmitter molecule: they affect the receptor by binding at a different site on the protein. This is called allosteric modulation.

 

In psychopharmacology, GABAA receptor PAMs used as drugs have mainly sedative and anxiolytic effects. Examples of GABAA PAMs include alcohol (ethanol), benzodiazepines such as diazepam (Valium) and alprazolam (Xanax), Z-drugs such as zolpidem (Ambien) and the barbiturate drugs.

 

https://en.wikipedia.org/wiki/GABAA_receptor_positive_allosteric_modulator

 

 

And this is from the University of Maryland:

 

Valerian

Overview

 

"Valerian has been used to ease insomnia, anxiety, and nervous restlessness since the second century A.D. It became popular in Europe in the 17th century. It has also been suggested to treat stomach cramps. Some research -- though not all -- suggests that valerian may help people with insomnia. Germany's Commission E approved valerian as an effective mild sedative and the United States Food and Drug Administration listed valerian as "Generally Recognized As Safe" (GRAS)."

 

"Scientists aren't sure how valerian works, but they believe it increases the amount of a chemical called gamma aminobutyric acid (GABA) in the brain. GABA helps regulate nerve cells and has a calming effect on anxiety. Drugs such as alprazolam (Xanax) and diazepam (Valium) also work by increasing the amount of GABA in the brain. Researchers think valerian may have a similar, but weaker effect."

 

http://www.umm.edu/health/medical/altmed/herb/valerian

 

 

Thanks for the information. I value your opinion & I thought that was the case.  Just wondering why Ashton said it was okay to have a glass of wine during withdrawal since alcohol also effects the same gabba receptors. I agree I should just avoid valerian even though I've been off Benzos for 44 months.

 

Korbe

[[La...]]

With alcohol, I think it's a very personal choice. I won't try it again after all of this. I was never that interested in it, and I won't miss it. For some who go through benzo withdrawal, it's still something they'd like to add back into their lives. Each person has to make that decision for him- or herself, but I'm guessing there may be a risk to trying it again.

 

With the herbs, I doubt they're very strong, but again, it's a decision about risks we're willing to take. In my opinion, it might not be worth the risk. Others may think it is. I just think there are better things for improving sleep, and they have to do with lifestyle things, like going to bed and waking up at the same time every day, keeping the bedroom cool and dark at night, relaxing at night, not eating or exercising vigorously at night, etc. My best sleeping pill used to be aerobic exercise. When I was swimming and cycling regularly, I slept deeply and woke up refreshed after six or so hours of sleep. Great! I felt good. Now, as a dizzy dame, I can hardly walk. It doesn't help my sleep, but I do make an effort to do the other things I mentioned.

 

What have you tried already, Korbe? Maybe tryptophan is worth looking into if you really want a sleeping aid. I don't have personal experience with it, but I believe it's relatively safe.

[[La...]]

Hi Dizzy Buds,

How is everyone doing these days? It's been relatively quiet around here, and I'm hoping no news is good news. I've got another 8 today after yesterday's 6. It was a nice break from the internal roller coaster ride, but I'm back on it today. I know it's amusement park season right now, but I could really do without this kind of fun.

 

Anyone else?

 

Take care, All!

[[He...]]

Lapis. I went to an ENT Monday. I had a hearing test and the doc spent 5 minutes telling me it was not my inner ear. Referred me to a vestibular physical therapist... who I know and have seen before.  She sent me home and told me it was withdrawal... I'm still very very dizzy and fatigued.  Suppose to cut again but I'm afraid.

[[La...]]

Lapis. I went to an ENT Monday. I had a hearing test and the doc spent 5 minutes telling me it was not my inner ear. Referred me to a vestibular physical therapist... who I know and have seen before.  She sent me home and told me it was withdrawal... I'm still very very dizzy and fatigued.  Suppose to cut again but I'm afraid.

 

Good to hear from you, Healing seeker! I was wondering how things went for you on Monday. So, it sounds like it's exactly what you thought. I'm glad there's nothing else more sinister going on, but I know that it still sucks. How can it not?

 

Will you see the physical therapist? I went through the process of vestibular rehabilitation on two occasions for a few months at a time, and clearly, my symptoms didn't respond to it. I certainly gave it a very good try, though.

 

On the issue of cutting: I know it's scary, so try to go at a pace that you're comfortable with. But the bottom line seems to be that the medication is the problem, so it's good to keep moving towards the time when you will no longer be taking it. It interferes with vestibular compensation.

 

Stay strong, Healing seeker! You can do this! 

[[La...]]

One other thought, Healing seeker:

The fact that your physical therapist has acknowledged that it's withdrawal is a good thing. Many people never get that confirmation. Hopefully, she's onside and supportive, even if she can't help you right now.

[[Li...]]

Hi Lapis

Do you know of people who have got rid of their dizziness once and for all?

Thanks

Liz

[[La...]]

Absolutely, Liz! I don't keep a list or anything, but we've had a number of people come through this thread and then leave because they're better. Many don't come back to tell us that they're better, so it's hard to know when it happened for the various people.

 

Baylissa Frederick and Don Killian, both of whom have websites, and who have helped many others with their books and websites, were dizzy for long periods of time and are no longer so. You might want to check them out if you need some reassurance. I'm still on the boat, but others have disembarked!

[[Li...]]

Thanks Lapis.

It is reassuring to know that people do recover.

I had some kefir today for the first time in over 2 years and have been really tired and more dizzy than usual. Have you noticed a correlation between probiotics and increase in dizziness/ lightheadedness?

Thanks

Liz

[[La...]]

Hey Liz,

I don't eat dairy. I just take probiotics as a supplement, and I haven't noticed anything at all. My guess is that because dairy contains tryptophan, an amino acid that can make people feel sleepy, you may be getting an effect from it. Have you experimented at all with dietary changes? Everyone is different on this one, so it's really a trial-and-error thing.

 

My dizziness doesn't seem to be correlated with anything that I can put my finger on. Sometimes I can have less sleep, yet feel less dizzy -- and that doesn't make sense at all. It seems to have a life of its own!

[[He...]]

Lapis

I need some practical tips from you on dealing with the dizziness.  I've been paralyzed by fear due to it and I think the fear is fueling it.  My doctor told me to wait a bit till I cut again but I don't know what that means. 

 

I'm afraid to shower , walk , do anything.

 

I was told to stay upright... and that I was getting deconditioned. 

I need practical tips for moving forward.  My fear is off the charts.

 

Thank you... I'm mostly sitting.  Not good I know

[[He...]]

Also wanted to add if I do too much. I get dizzier the next day .  This is new.

I ve been told I'm cutting too fast and that I need to hold. I've been told I need to cut smaller amounts .... I'm very confused and extremely anxious

[[La...]]

Hi Healing seeker,

Yes, upright is better, for sure. Have you got a walker, or a cane, or anything else as a mobility aid? Is it possible to get a home visit from a physiotherapist -- or "physical therapist", as I believe it's called in the U.S.? It would be great if someone could help you with a set of exercises that you CAN do -- some in sitting, some in lying -- and then, with the addition of a mobility aid, you can add a little walking to that. With muscles and bone density, it's a "use it or lose it" thing, so they need to be used in order to function. I know it's hard, and I know you have some conditions that make it even harder, but it's important to do as much as you can to stay functional.

 

Regarding your taper, you probably have to ask yourself some tough questions about how long to wait before cutting. Because I wasn't on BB at the time of my taper, I just followed the Ashton Manual. I decreased my diazepam intake by 1 mg every two weeks, as per the table. It was actually not too bad! In my case, the SSRI likely played a big role in what happened to me, since I then had to wait a bunch of months, and then do a second taper. But I felt fairly stable while doing my diazepam taper. I had an every-other-day pattern of 6s and 8s out of 10 on my dizziness scale. That allowed me to use the 6s for harder exercises, like squats and other standing exercises. On the 8 days, I did a bit less.

 

I'm using a walker. It's essential. It has allowed me to get up and move around, even when I'm really dizzy. I haven't fallen, and I don't want to. That ugly walker (known as "Stable Mable") has been essential. Think about getting one, if you haven't already.

 

Everyone is different, of course, but I think we're all in agreement that benzodiazepines are problematic, that they interfere with balance, and that they can have long-term consequences. If your goal is to get off that med, then you might have to have a fierce chat with yourself about how to reach that goal. I wanted it out of my system really, really badly, once I found out that it was one of the main reasons why I was dizzy. I knew I couldn't cold-turkey or go very fast, so I made the plan to do an every-two-week drop in dosage.

 

Are you on other meds right now? MANY meds cause dizziness, so if you are, that could be part of the problem too. Look into it. For me, the SSRI was part of the problem. I regret that I started taking it, but once on it, I didn't want to do two tapers at once.

 

Take care, Healing seeker. I hope that helps a bit. 

 

 

 

 

[[He...]]

Lapis does this condition cause you anxiety?  And how do you deal with that?