60% and breaking through the Glass Ceiling!

I joined this board a very sick girl (actually nearly 50 so not such a young girl!), around Nov 07 and had been suffering severely with MAV since 26 March 06. The relief I felt with knowing that other people were suffering just like me, and who felt their life had been ripped away from them just like me and who suffered awful nausea, dizziness, fog, poor concentration, splitting migraine headaches, vertigo…and the list goes on and the condition just seemed to go on and on too, well…it gave me great solace and an empathy so great for others suffering in this way too. When I first joined, I apologised for ‘letting go of all my garbage’ because I had noone who really understood what I was going through, and instead of being told just ‘to get on with it, the power of positive thinking’, I received so much sympathy and in that sympathy and empathy, it instantly made me feel comforted. Sometimes it doesn’t pay to be stoic when you’re just trying to keep your head above water, and others appreciating your situation can give you such comfort that I feel can really make your resolve in your condition become stronger.

Anyway lets fast forward…more empathy and sympathy and much, much information of personal experiences both good by board members as well as bad have helped me consider my very own personal experience and my very own choices about my treatment. Oh and the wonderful information posted really has made me feel more well informed.

I’ve been taking sandomigran .5mg 7 tabs daily for nearly 2 years and klonopin 500 microgram 1 tab per day. My progress has been very slow, but consistent and I think that’s perhaps how this disease moves. My main symptom/s which wouldn’t seem to allow me to progress much further than my 60% was the anxiety/stress issue we all discussed. It wasn’t that I was suffering from stress it was the MAV which was affected by the slightest rise in the anxiety threshold (and that is a very subtle difference). After hearing stories about meds for anxiety and in hearing about Julie’s success with Klonopin too and comparing dosages, I took the plunge and increased my Klonopin from 1 to 3 tabs per day.

I just wanted to say that the change in MY formula was nothing short of miraculous, I’ve enjoyed my son’s 18th birthday this weekend, been to the local pub to celebrate with his friends for several hours on Fri night with extremely minimal difficulty and entertained 40 people at home on Sunday for lunch to celebrate where I actually **DANCED ON A TABLE **and had an absolute ball! It was the most fantastic weekend I’ve spent in 2 years and 2 months (but who’s counting!).

I have finally broken through the 60% glass ceiling and have felt 70% or even more for the past few days. I’m not for one minute going to say that I may not slide backwards as I know I will always have this disease and need to monitor and treat, but I just wanted all my supportive board members to know that there are times to feel desperately sad and have your friends support you and there are times to feel really good and have those same friends rejoice in your wellbeing!

I wish you all much health and wellbeing…but if you’re having a bad day, please tell me too because I’ve been there (and who knows, may go there again) and **I WILL LISTEN AND CARE!**Regards to all, Judy

1 Like

Judy,

Are you serious?? That’s GREAT! Yes, that one extra Klonopin made a world of difference to me - actually got me out walking!! I am so happy for you.

It’s great to hear some good stories. Thanks for citing me in your post - Kira is the one who gave me guidance regarding taking the benzo plunge. We discussed it in detail, including the risks of addiction and tolerance, plus the fact that it’s not actually a cure, but a vestibular suppressant. Oh, and benzos can depress you. I decided it was worth the risk. In addition, there is a stigma to taking benzos and I’m glad I got past that.

:slight_smile:

Judy,

I have also recently bumped up my klonopin dosage. My doc has been trying to get me to do it for a couple of years now, but from what somebody posted here, I decided to do as you did, and let my doc increase the dosage. I only went from .5 mg at bedtime to 1 mg at bedtime, but I have noticed a difference already. For me, the main change is that I have noticed a decrease in my tight jaw muscles caused by the bruxing from my other med. If I don’t run into the side effect I expereinced a couple of years ago, I may let him up the dosage again in 6 months.

For me, my good days are 90% to 100% normal, so I can’t tell if the Klonopin is helping with balance. I may find out during my next dizzy spell though. Those drop me down to 50% to 70% of normal, and if I don’t find myself going so low, or as often, then it is probably doing something.

BTW, good to hear about your improvement, and I hope it lasts.
Brian

— Begin quote from “Julie”

In addition, there is a stigma to taking benzos and I’m glad I got past that.

— End quote

What stigma? Klonopin being the “Stevie Nicks” drug? :smiley:

Heather

Hi Julie, Brian & Heather,
thanks for your replies, I just wanted to add a ‘good news story’ to the board as we have so often wished we could see more of. I know it would be inspiring to me if I heard of other’s who were having successes, even small!

Brian, if you don’t mind my asking, what course of meds do you take, I’m so pleased for your success and am interested to know what your own meds do for you (our conditions are all so unique eventhough we have similarities too) and what are your major features of the disease that you have to deal with?

And Julie, what is your “formula” and how do you think each of your meds work together to target your specific features of your condition?

Also, just because I’m taking the Klonopin presently and have felt such a leap of improvement, I would still like to know a bit more about the med.

(excerpt from Julie’s post)

— Begin quote from “Dizzyblonde”

Thanks for citing me in your post - Kira is the one who gave me guidance regarding taking the benzo plunge. We discussed it in detail, including the risks of addiction and tolerance, plus the fact that it’s not actually a cure, but a vestibular suppressant. Oh, and benzos can depress you.

— End quote

Any information, advice and personal experiences would be great. Question: If Klonopin is a vestibular suppressant, what other meds can replace that?? I have to say I’m lovin’ what it’s doin for me at the moment, just hope it continues?? :?

regards Judy

Wow Judy, you are full of good questions! :slight_smile:

I first started Zoloft, at a time when, coincidentally and unknown by my neuro-oto, I was in a Major Depression. I agreed to it readily and started noticing an improvement in energy and mood almost immediately. I also noticed an improvement in dizziness, but that wasn’t as easy to judge, nor was it quite as significant as the energy and mood improvement. I needed more, was unable to tolerate any increase in Zoloft due to the arousal part of it and talked him into trying Neurontin (it wasn’t on his favorites list). Again, immediately, I felt a calming of my nervous system, I don’t know how else to explain it but the Zoloft arousal went away, plus some. I had more improvement in my dizziness, more energy in my body, was even more functional, but again, only to a point. At this time, because of the Neurontin, I was able to increase the Zoloft to 75, which is where he wanted me, but with absolutely no more improvement in dizziness. I’m sticking with Zoloft 50. I kept going up on Neurontin, feeling more improvement along the way, but hit a dose where I was getting pretty severe myoclonic jerks, anytime I was at rest - meaning not active. And on falling asleep they were really extreme, even had some waking me up in the middle of the night. In addition, I started having arrhythmias. We decided to taper down on the Neurontin and pretty quickly these SEs went away - I’m sticking at Neurontin 900. Somewhere in there I added Klonopin. First .25 bid, then .5 bid, then finally, and lastly, .5 tid. My neuro-oto was clear that that is as high as he wants to go with Klonopin, I assume because of addiction/tolerance issues. Sometimes I wonder, what did what, but one thing I do know is that I need all three - when my doc suggested i go off Neurontin completely I said no, i need it. Also - I told him, Klonopin out-performs them all. What this tells me is that the preventatives are helping, but most of my improvement has been due to the vestibular suppressant of Klonopin. Unless I’m wrong - I have seen Klonopin on the list of preventatives, but I think it’s working as a suppressant. The last thing I’ve done - went to see an endocrinologist. My TSH was found to be borderline high and he started me on Synthroid. By day 7 I had increased energy, not sure about the dizziness. But that is when I started taking walks each day. I hadn’t been out of the house (besides doped up rides to doc offices) for more than a few steps to walk my dog in going on two years. Since the Synthroid, I’m taking 20 minute walks, not sleeping ten hours a night, not fighting falling to sleep by 5 PM. So, that’s another med I need. And I’m probably not done - i may be adding another to my pill box before the month is up. Regarding Kira, like you, i noticed that she was taking Klonopin and was stable on it. I had serious reservations and needed to talk to somebody who had been treated with it successfully, so I asked Kira for her input. We were in agreement regarding the risk/benefit ratio, even though we both worry about long-term use.

Hope that helps,

Julie

Judy,
My first neuro-otologist had me start klonopin when I actually paged him on a Saturday night (I don’t think anyone else ever figured out how to get him through the hospital switchboard before) because the room was spinning wildly after I did my home epley exercises for the 100th time.
I fought him at every step–I didn’t want to go on it, and I didn’t want to stay on it: the stigma is that benzo’s are addictive. You know what–so what, they work.
Finally after weeks of frank vertigo, nausea and misery: he told me to go up to 3 mg. I could only stand that for a short while, as it made me too tired and groggy. I have read different upper limits–some one on the MDDs board was told to go to 4 mg. The official prescribing information for anxiety is up to 4 mg a day. For seizures, it’s up to 20mg/day.
So, I stabilized at 1mg am and 1.75 mg pm and gradually cut down to 1 mg twice a day. With the recent flare, I added .25 mg to the evening dose.
My current otologist initially gave me a hard time about it, telling me to cut back, but recently told me to accept the fact that it is a medication that I require and treat it with the same attitude I would as a medication for any chronic disease. My GP and ENT have both told me a little klonopin was worth the benefit.
I kept thinking I’d get off it, should get off it, and now I realize that it helps me and I’ll come down on it, as I have, when I feel better.
I saw my ENT, and the audiologist gave me a lecture about how the brain can’t adapt if it’s suppressed–well, all my testing was abnormal for over 20 years, and I wasn’t on the klonopin. My ENT said that some vestibular defects never adapt. I also read how partial defects, like mine, can just continue to give trouble while a completely dead nerve is easier to handle.
I do get BPPV, and there was just an article about how people with migraine get 7.5x more BPPV than anyone else–the theory is that the vasospasm knocks loose the crystals. But, when I try the repositioning exercises, I get so much worse.
So, there is a stigma about benzo’s, and my otologist would prescribe it as “for vertigo” so the ignorant pharmacy technicians would leave me alone–one had the nerve to tell me that they have to count the “controlled substances” twice, you know.
This is one the same highly educated women who advised me that people allergic to penicillin could still take amoxicillin…
Long story, I’ve come to reluctantly accept that it is a medication that I’ll be on for a while, and it is not a moral failing–it’s vertigo, and the drug works.
Doctors don’t like to prescribe drugs that can be abused/controlled substances. My ENT said that he’s never seen anyone with vertigo abuse klonopin–they take when they need it, and back off when things get better.
The stuff works for me, and keeps me functioning, and I can’t imagine having 40 people over and dancing on a table, so you should relish the improvement.
Kira

Judy,

I take a combo of Depakote and Klonopin. The Depakote is for the MAV and the Klonopin is for headaches caused by the Depakote. I am a tooth grinder and I have just recently found out that the Depakote can agrevate this which is where my headaches come from. Klonopin is just on of the many meds that can be used to treat bruxing, so I “think” this is what I am getting out it. From some recent posts on here, I talked to my doc last week and regarding the dizzies, I had to agree with his logic, “if it ain’t broke then don’t fix it,” so I am staying on the Depakote.

BTW, those “good days” I talked about earlier are about as frequent as my bad days. Then I have what is now “normal for me” days which is about 80% of the time.

Brian, Kira & Julie
thanks for your responses again to the Klonopin issue. I read up a little further about the med today and it’s long-term dependancy effects and although it raises concerns, I really can’t deny the enormous improvement I’ve felt in a short period of time and my hope is that this will continue and like you guys…I’ll worry about the dependancy issues later. I really must have some kind of chemical imbalance that fits really well with what this particular med consists of, so I’ll be sure to raise this issue with my neuro mid June. Interestingly, it was my previous visit to the ENT who prescribed this med, not my neuro and when I had the prescription filled, the pharmacist (who was absolutely lovely), said that she thought it was a wonder drug and that it was hugely prescribed for the mal de debarquement syndrome. I suppose some of MAV’s features overlap and hence the effectiveness.

Julie, I like you feel that I need a little ‘formula’ of pills to relieve several symptoms I have, and I’m particularly intersted in the idea of following up with an anti-depressant which does not have contraindications with my sandomigran (Pizotifen). What I’ve read on this board appears to show a conflict with Sandomigran and SSRI’s, so I might have to leave that for the neuro in June (why do we have to wait so long between appointments!!! :x

And thanks also everyone for all your info on your very own med ‘formulas’, it’s food for the melting pot in my next conversation with the neuro. Oh Julie by the way…you mentioned about myoclonic jerks, well they appeared big time with me when this disease was manifesting itself and the Klonopin really helped me with that, so that’s why I told the neuro I wanted to persue it. Little did I know that it was going to help me even more down the track and all it took was the right dosage. How many out there in ‘med-land’ are on the right med but not the right dose, the mind boggles!
cheers
Judy :stuck_out_tongue:

— Begin quote from “Dizzyblonde”

What I’ve read on this board appears to show a conflict with Sandomigran and SSRI’s, so I might have to leave that for the neuro in June (why do we have to wait so long between appointments!!! :x

Judy :stuck_out_tongue:

— End quote

Sandomigran is a serotonin antagonist, SSRI’s are serotonin re-uptake inhibitors. My doc was willing to give me a TCA along with my SSRI, but I refused because of my sensitivity to the SSRI I was taking. I think Adam was on Sandomigran (?) and added Effexor (?) Your doc will hopefully know what to do.

Regarding appointments - I talk to my doc on the phone sometimes as much as once a week. I’ve been tweaking my medications for almost 9 months and have only seen him twice. I even asked him once, after not seeing him for 6 months, if he wanted me to come in - he said, no, we’re doing fine over the phone. As hard as it is for me to travel, I really appreciate that.

Like Kira said - savor the moment and good luck to continued improvement.

Julie