(thread edit) difficulty, loss

[Thread renamed. See newest post.]

Well, look who’s come back yet again … MVertigo’s own ‘prodigal son.’ I’m annoyingly predictable, aren’t I – I disappear for months on end, then suddenly show up again.

Unlike how I usually post, I won’t say much right off the bat.

Suffice it to say, I’ve had a lot of ups and downs since I was last here, but am having a particularly tough time recently.

I’m fairly confused right now, and would appreciate some … input. Does anyone mind if I share a bit about what the last few weeks/months have held.

George

George!

I missed you. Please share - that’s what we’re here for :slight_smile:

what she said :slight_smile:

I THIRD THAT!

Happy to see you on here, but bummed you’re not doing well.

Kelley

Hey George,

Bring it on my friend … we’re all here to help if we can.

Scott

Hi George

Of course we don’t mind if you share. Glad you’re back in touch. :slight_smile:

Brenda

Lay it on us !!!

Let’s hear it!

Greg

Wow, talk about a warm welcome from a lot of people. Well, thanks, that’s very nice. Lot has happened in the past day or two. But I think I’ll make a new thread of it – no, I’ll just retitle this thread.

George

OK, well, here’s the bulk of what’s happened since I was last here…

For reasons explained before, I decided to taper off benzos to see if the dizziness is still “real” MAV, or is now just a dependence symptom – a “MAV mimic.” Stranger things have happened with long-term benzo use, so I’m trying to sort out the variables.

In November I went to a psychiatrist who knows benzo tapers. I was on 2 mg Xanax, which = 40 mg Valium. So we did a crossover taper to Valium and I’m withdrawing that instead (longer half-life). Taking it quite slowly.

Oddly, for a long time (until maybe late February), it actually seemed to be working rather well. Felt less symptomatic, less dizziness, in general/overall.

I’m down to 11 mg, which is ~0.5 mg Xanax (1/4 of the dose I was on). But ever since hitting ~15 mg, it’s been a challenge. Admittedly I recently dealt with virus, then we just had a huge heat wave for 10+ days, etc. Each made matters worse at the time.

Still, dizziness seems increased as the drug decreases (below 15). Hard to know if it’s because (a) MAV’s still active, and the dose is no longer high enough to work well, or (b) because withdrawal is just never easy. Benzo withdrawals ARE pretty darn nasty for a lot of folks…

Maybe it’s both. Maybe I still have “active MAV” and the dizziness is being increased by the drug (and/or withdrawal). Either way, despite what many people say (incl. Dad, who’s sort of “it’s tough, but try to deal with/ignore it – don’t let it run your life”) … it’s NOT at the level where I can just “get over it,” etc. It can be quite incapacitating when it’s going full steam ahead so I’m not quite sure what I’ll do in the months to come as the dose lowers. Will the brain reprogram, or will I be up MAV River without a pill?

The last part of it is we just found out this morning that our beloved 15-year-old dog has oral melanoma – mouth cancer – and about 5-12 months, short of a miracle.

I’ve ‘leaned on’ the dog as a source of great comfort and support over the years and always wished he’d be here at least long enough to … see me to the end of my ordeal.

I’ve been on an emotional rollercoaster long before today, so it’s just insult to injury. I don’t really know how to feel, what to do or think.

George -

I’m so sorry about your dog. I don’t know how you can handle that and taper off benzos too, when you may have “active MAV.” I think treating MAV on an “as needed” basis doesn’t work as well as being on a preventive, if you can find one that works for you. Are you also looking to start on something else for MAV as you’re coming off benzos?

I’ll admit I don’t understand the “mimic” hypothesis, but if you’re getting dizzier now, what if you ARE experiencing MAV? It’s not a good idea to just let yourself suffer while you’re going through withdrawal, is it? The dizziness MIGHT be “just” withdrawal, but what if it’s not? At what point (or maybe the question is how) do you decide the mimic hypothesis has been disproven and you really do have MAV going on?

Have you talked to your doctor about the amount of dizziness you’re experiencing? Maybe the doc would know whether it’s typical for withdrawal or maybe it DOES sound to the doc like there’s something else going on too.

As an animal lover, I know what it means to have a terminally ill pet. I really feel for you. Take care.

Thanks maryalice, appreciate the kind words…

No, not starting any new medicines in the process. Figure it’d just complicate things (harder to know what’s doing what).

One problem is I haven’t yet found an effective preventive. Ten failed trials so far. But I’ve been on a daily benzo for so long (2+ years), maybe it’s become part of the problem. Trying to determine. I’ve been reading that when a drug/benzo “turns against you” (stops working, or causes dependence, etc), you often get a “mirror image” of the same symptoms the drug once helped.

It seems like the only way to know if MAV’s still there is to withdraw the drug all the way and then allow time for “compensation” – see if dizziness starts to resolve. Far as everyone else is convinced, the withdrawal process is painful but necessary.

Hi George -

I don’t know about “compensation” - maybe there’s something to that, maybe not. I just hate to think of you going through this with no plan of any medication support. (Whether it’s “withdrawal” or MAV, it’s freakin’ rough and dizziness sucks no matter what causes it.) I wonder if the MAV gurus in Chicago (since you’re in Northern IL) would concur with this approach - have you had a consult with one of them? I’m sorry if you’ve posted about seeing one of them and I just can’t recall.

Todd (Go Gonzaga) tried a bunch of preventives too, and is going back to the drawing board - he asked for input and I pointed out to him that he wasn’t on a very high dose of Topamax, especially since he said he didn’t experience any side effects. Have you gone back over your list to see if there’s any you might revisit, even if you’re not prepared to start now?

My dizziness is pretty much under control now, but not headaches - I’m in your neck of the woods and I’m a human barometer. The last couple days I’ve been fighting a headache. No dizziness, thank goodness, but I wonder if this weather shift has affected you?

Hope your dog is doing OK. Take care.

— Begin quote from “georgekoch”

OK, well, here’s the bulk of what’s happened since I was last here…

For reasons explained before, I decided to taper off benzos to see if the dizziness is still “real” MAV, or is now just a dependence symptom – a “MAV mimic.” Stranger things have happened with long-term benzo use, so I’m trying to sort out the variables.

In November I went to a psychiatrist who knows benzo tapers. I was on 2 mg Xanax, which = 40 mg Valium. So we did a crossover taper to Valium and I’m withdrawing that instead (longer half-life). Taking it quite slowly.

Oddly, for a long time (until maybe late February), it actually seemed to be working rather well. Felt less symptomatic, less dizziness, in general/overall.

I’m down to 11 mg, which is ~0.5 mg Xanax (1/4 of the dose I was on). But ever since hitting ~15 mg, it’s been a challenge. Admittedly I recently dealt with virus, then we just had a huge heat wave for 10+ days, etc. Each made matters worse at the time.

Still, dizziness seems increased as the drug decreases (below 15). Hard to know if it’s because (a) MAV’s still active, and the dose is no longer high enough to work well, or (b) because withdrawal is just never easy. Benzo withdrawals ARE pretty darn nasty for a lot of folks…

Maybe it’s both. Maybe I still have “active MAV” and the dizziness is being increased by the drug (and/or withdrawal). Either way, despite what many people say (incl. Dad, who’s sort of “it’s tough, but try to deal with/ignore it – don’t let it run your life”) … it’s NOT at the level where I can just “get over it,” etc. It can be quite incapacitating when it’s going full steam ahead so I’m not quite sure what I’ll do in the months to come as the dose lowers. Will the brain reprogram, or will I be up MAV River without a pill?

— End quote

It’s very hard to say what’s going on George. As you did hit a ‘sweet spot’ even while tapering off the Benzos that suggests to me (and I’m certainly not an expert) that perhaps your symptoms were not so much Benzo withdrawl but MAV after all. I agree with you that ‘toughing it out’ as your Dad suggests is not an option. I think all of us have a pretty clear idea of where our threshold is - some symptoms can certainly be uncomfortable but tolerable for ‘toughing it out’ but beyond that you’re pointlessly living in misery. I know you’ve had some issues with your folks before re getting them on board with what your dealing with so I do hope you seem some improvment there. Our condition is tough enough without the ‘get over it’ response.

HI George,
I’m so sorry to hear that things are tough. I’ve often wondered how you were doing, and hoping that your absence was because you were naked skydiving, or something crazy since you were all better! Anyway, there aren’t really words to describe the pain of losing a loved one. I personally believe the loss of an animal is one of the very worst. I hope that you get some good support during this difficiult time. I’m glad you shared with us, as there are so many caring people on this site.
Sending virtual hugs…
Kelley

I agree with Kelley, the loss of a pet is really hard. I had my two cats for 15 and 20 years, I had MAV when I got them as kittens and had it when they left me. The last two years with the last one were really hard as he was so ill and it was all consuming for the last year. I hope and pray for a miracle for your dog and if not, that you gain some extra strength to help you through.
Best Wishes
Christine

Couldn’t agree more re the loss of a pet. My (family) dog died twenty years ago and I STILL miss her and even occasionally have a dream about her (and in some ways she was a terrible dog - a Bull terrier who would fight every other dog, had to be walked late at night on a short leash with a stick etc) but she was a true friend. I mean really, a friend, would comfort me when I was sad (they just *know *don’t they?) and was just a really good pal.