Yes I will let you know how it goes. I hope your meds start to help and the side effects don’t stick around too long x
— Begin quote from “sarahd”
Tony- has the gabapentin helped you? are you on anything else?
— End quote
Hi Sarah. Sorry for the late reply. Not been around for a few days. I’m also on 80mg Topamax, but was on this before seeing Dr. S. Basically, I had a really good spell a few months ago, where I thought everything was going great…and then it slipped back, almost to the usual baseline again. 
Tony.
Tony you were on pitz once right? how bad were your symptoms before it? this is defo where I need to go next X
— Begin quote from “Blondie”
Tony you were on pitz once right? how bad were your symptoms before it? this is defo where I need to go next X
— End quote
Hi,
yes I was. I loved it the first time around - this was in the early days before I even realised I had MAV and before I had even really started seeing specialists. My GP prescribed it because his Mum had had similar symptoms and had success with it! It completely removed all symptoms the first time I took it - som much so that I completely forgot about the 24/7 dizziness - it simply went away after about 3 weeks or so at 1.5mg, I think (I’d had to check my notes)!! But then my heart went out of rhythm (don’t worry - this was NOT the Pizotifen - my heart is prone to this and had done it many times before - it was just bad timing). I was advised to come off it simply as a precaution - there was no need and I soooo wished I hadn’t - it’s my one big regret. When I returned to the Piz months later, it simply didn’t work as well - perhaps 70% - despite me going as high as 3mg.
I still have it in mind to return to the Piz one day…
Tony.
Tony I have a prescription for pitz now you know me Im from dizzytimes 
Im in limbo here now as Im on ami aswell but in the biggest relapse Ive ever had , I had my son 5 weeks ago.
Now Im unsure do I stop the ami and go on the pitz in a week or so or do some dual therapy with it? Im so confused about this I need to do something fast
Hi Tony,
Why don’t you go back on Pitz and keep your other meds too? 70% is pretty good- how are you feeling now???
— Begin quote from “Blondie”
Tony I have a prescription for pitz now you know me Im from dizzytimes Im in limbo here now as Im on ami aswell but in the biggest relapse Ive ever had , I had my son 5 weeks ago.
Now Im unsure do I stop the ami and go on the pitz in a week or so or do some dual therapy with it? Im so confused about this I need to do something fast
— End quote
Hi there Blondie - congratulations on the birth of your son! 
Sorry to hear about your relapse
Are you currently self-medicating and not seeing a consultant? Kelley is very good at answering medication related questions, in terms of their action and interaction. Also, every single person seems to react completely individually/differently to a drug or combination of drugs! I’m guessing you can’t just stop the Ami dead, anyhow, but need to taper off it gradually…? Was the Ami working for you previously, and has now stopped working? Have you room to up the dosage?
Tony.
— Begin quote from “sarahd”
Hi Tony,
Why don’t you go back on Pitz and keep your other meds too? 70% is pretty good- how are you feeling now???
— End quote
Hi Sarah,
When I went back on the Piz a 2nd time and it didn’t work as well I was very disappointed. But I still knew that 70% wasn’t too bad. That’s why it was one of the most difficult decisions I’ve ever made - to let go of the Piz again for a 2nd time, and start trialling other meds. I just knew I’d likely have a difficult time ahead, and completely upset the apple cart, so to speak. At the time, I was under the care of a neurologist, who started me on Topamax. Later, I started seeing Dr. S who kept me on the Topa and added Gabapentin to the mix. So now I’m under Dr. S’s care, I’m going to place my faith in him. We have discussed how well suited I was to the Piz in the past, and I know that he may try me on it again, perhaps with the Gabapentin rather than the Topa, judging by his comments. So, I guess I’ll bide my time until January.
I’m not feeling great right now, and haven’t for a couple of months. And yet I had a little spell where I felt great on the Topa and Gabapentin - like I was really getting somewhere again - then a relapse…go figure…all part of the frustration of this condition!
Tony.
Hi Tony,
Sorry I just don’t understand the logic- why on be on Pitz and be at 70%, and then add other meds to see if you can get better than that? I would kill to be at 70%- I would try and get back on it if I were you, but everyone is different.
Thanks Tony
Yes the ami worked well for me for around 18 months I was 90% on some occasions but since having Charlie Im at like 30% and nothing seems to be pulling me out of this relapse. As you can understand Im getting very agitated and worried.
I upped the ami to 30mg but it seemed to make me worse for two days but I just dont know what to do X
— Begin quote from “sarahd”
Hi Tony,
Sorry I just don’t understand the logic- why on be on Pitz and be at 70%, and then add other meds to see if you can get better than that? I would kill to be at 70%- I would try and get back on it if I were you, but everyone is different.
— End quote
Hi Sarah,
I can see your view-point. But firstly, 70% was simply a subjective attempt to quantify a feeling I had about where I was in relative terms. It’s not like there’s a standardised scale of MAV, and someone can take some blood and say, “OK, you’re at 68%…” - wouldn’t that be useful!! 
So perhaps you’re hearing 70% and thinking, “WOW!”, whereas I was thinking, “Urrghhh”! I guess what I’m saying is that one person might experience someone else’s MAV and put a completely different figure on it (i.e. what I’m calling 70% you might call 90%, what someone else calls 50% I might describe as 65%, and so on - that’s the subjectiveness of trying to quantify something we physically feel or experience, I guess). I certainly wasn’t ungrateful for having some success the second time around on the Pizotifen, but…
Secondly, what you have to remember is where I was *relatively *speaking. I had just experienced practically complete relief from the 24/7 dizzies, only to have the heart thing happen and resume the med months later and find that, *relatively *speaking, it simply didn’t work as it had before. That was a huge disappointment, it really was. I had trouble accepting that - it reminds me of some song lyrics: “If I hadn’t seen such riches, I could live with being poor…”!! To have the 24/7 dizziness back, albeit slightly muted and without so many of what I called the “attempted mini spin attacks” (where a sudden vertigo spin feels imminent"), was just unacceptable after the success I had so recently experienced. I have read of many others on these and similar forums, for whom 70% (there’s that subjective figure again! ) just isn’t enough. Perhaps 70% is too high a figure - perhaps I’m only at 60% or 50%. I still have unrelenting 24/7 dizziness, trouble seeing friends and socialising (I’m sick of those “falling off the chair” feelings!).
But now, I’m under the care of Dr. S. and I’ve mentioned all my history to him, including what happened with the Pizotifen, and I guess I have to trust in him. But I’ve never forgotten the Piz, and know that I can return to it one day if need-be (I’m even hoping that it might regain its magic now that I’ve had such a long break from it!). I also think that Dr. S might try mixing the Pizotifen with what I’m currently on at some point - probably the Gabapentin.
Tony.
Hi Tony,
If it makes you feel any better, I had a similar experience with Nortriptiline. The first time I tried it, within about 4 weeks everything in my vision was completely still- normally, when I sit still, everything in my vision constantly shakes back and forth. I had to stop it though bc of a side effect. I went back to it about 6 months later, and while I actually got different side effects this time, it didn’t work nearly as well on that visual symptom. I don’t know why this is- I have seen this pattern on many other people too- don’t know why our bodies have to suck like that GRRRRRR!!! I know what you mean about what 70% means- it is certainly different for everyone. For me, my actual dizzy symptoms are probably 80% better which is great- but my balance has been like 10%, where I have to use a cane to get around- so yea it is certainly different for everyone.
— Begin quote from “Blondie”
Thanks Tony
Yes the ami worked well for me for around 18 months I was 90% on some occasions but since having Charlie Im at like 30% and nothing seems to be pulling me out of this relapse. As you can understand Im getting very agitated and worried.
I upped the ami to 30mg but it seemed to make me worse for two days but I just dont know what to do X
— End quote
Hi Blondie,
I am wondering if your dr. has prescribed any type of benzo for you? Maybe this could help your symptoms while you wait for the meds to kick in???
No they hardly prescribe those in the UK as you might know not sure if your from the UK?
Tony quick question what dose do you feel pitzo worked at? Also how long to kick in? thanks
— Begin quote from “Blondie”
No they hardly prescribe those in the UK as you might know not sure if your from the UK?
Tony quick question what dose do you feel pitzo worked at? Also how long to kick in? thanks
— End quote
Hi Blondie,
I’ve just replied to your PM - but the first time around the Piz worked after about 3 weeks or so at 1mg (I started at 0.5mg). When I returned to the Piz a second time months later, I went as high as 3mg.
Best wishes,
Tony.
— Begin quote from “sarahd”
Hi Tony,
If it makes you feel any better, I had a similar experience with Nortriptiline. The first time I tried it, within about 4 weeks everything in my vision was completely still- normally, when I sit still, everything in my vision constantly shakes back and forth. I had to stop it though bc of a side effect. I went back to it about 6 months later, and while I actually got different side effects this time, it didn’t work nearly as well on that visual symptom. I don’t know why this is- I have seen this pattern on many other people too- don’t know why our bodies have to suck like that GRRRRRR!!! I know what you mean about what 70% means- it is certainly different for everyone. For me, my actual dizzy symptoms are probably 80% better which is great- but my balance has been like 10%, where I have to use a cane to get around- so yea it is certainly different for everyone.
— End quote
Hi Sarah. I agree - I too have seen this pattern repeatedly, where returning to a drug has a completely different effect, both in terms of results and side-effects. I can only assume, since the drug doesn’t vary, that our brains must constantly change biologically, chemically, etc - it’s completely frustrating. It’s like throwing the drug at a moving target…
I’m really sorry to hear about your struggles with the vision and balance. I often bump into the corners of desks, etc because I’m mis-judging things because of the disequilibrium, etc. I’ve had the Pizotifen work great the first time around, but not so great the second time. Then the Topamax on its own seemed to work in patches throughout the various dosages. Then the Topamax and Gabapentin combined seemed to work for a while - but not now…and on it goes.
But for me, when a drug seems to work, everything ‘clicks’ into place - I realise then that all the various symptoms aren’t really different things (for me at least) but are all just manifestations of this one MAV disease. When a drug works, truly works, all symptoms seem to improve - the wobbly, trampoline floor feeling, the false-motion, the disequilibrium, the brain-fog - it all improves.
Are you able to find some kind of ‘middle-ground’ with the Gabapentin - where pehaps you keep the pain-relief but regain some balance?
Tony.
Hi Tony,
That is really interesting that for you, when a drug works, it helps all symptoms. I should mention that all my problems started after a barotrauma- and I also am suspected of having a fistula. I am curious if maybe the MAV drugs are helping everything but my balance because maybe that is affected by the fistula??? I have so many questions, and my Dr. has almost no answers (he is a phenomenal otoneurologist with the best credentials one can have). He literally can’t answer these things- so frustrating- so I am trying to figure out how to help the symptoms, and trying not to ask WHY so much- there is no real answer to that I guess.
About the Gabapentin- interestingly, it didn’t make my actual dizziness worse- just my balance. Again, maybe this is from the fistula??? Who knows. I can’t really go down on the dose anymore without it working for pain unfortunately. I am trialing Lyrica now (with the Nortrip that I am already on)- it is so sedating though- very frustrating.
I guess one of the “take aways” that I am getting from this forum is that if you are lucky enough to find a med that works, stay on it at all costs- because if you go off of it, you may not get the same relief later on.
Are you on the diet? If you are, do you think that has helped you at all? I tried it initially to no effect, so I just eat whatever I want.
Sarah
Hi Sarah,
wow - I see what you mean about the barotrauma and suspected fistula. Your hypothesis would fit, wouldn’t it - MAV drugs can’t relieve something physical which can’t be affected ‘chemically’? Can your neuro at least consult with someone who might know about these things? Or put you in touch with someone who might know? I can imagine how frustrating and difficult it must be having this mix of problems.
Once I had the Pizotifen experience, I swore I’d never again be persuaded to prematurely come off a drug! Like you say, that’s at least one thing I’m learning from this! I am on the diet, and have been for probably 3 years now - it’s just become a way of life. When I started seeing Dr. S about a year ago, he tightened up the diet even more (no eggs, and not even any Rose wine, in addition to the usual Red)! I’m not sure the diet has helped to be honest - I’ve never identified any specific food triggers, but I do think red-wine and aged beers may cause problems. Also, I’ll never bother going back to caffeinated coffee - when I came off it I felt sooo much calmer and more relaxed and less ‘edgey’ and agitated - that really was amazing for me.
Tony.
Hi Tony,
Yes, I have a very complicated situation- it has taken me so long to find a Dr. who will take the idea of a fistula seriously- I am curious if the two years that have passed have caused me to develop MAV on top of this- my neuro doesn’t have any real answers to these types of questions. I feel extremely fortunate to have found an otoneurologist and an otologist who are both willing to work with me- they work together at a prestigious Eye and Ear hospital- they discussed my case together- so it is like getting a second opinion too- I am so grateful for this. The neuro has been trying to treat the MAV through drugs, and if this doesn’t work fully, then the otologist has offered to do an exploratory surgery for a fistula. Before finding these Drs., I had seen 3 other very reputable neurotologists- they all had different ideas for fistula symptoms- they all concluded that I couldn’t have one- i.e.- “you have to have a positive fistula test,” “you have to have hearing loss,” “you have to get dizzy when you cough or sneeze”- all of these criteria are not necessarily correct. So yes it is so complicated- I wish I could just have one problem or the other- really not sure which I would even choose!!! Based on the articles I have read online, the patient experiences I have read online, and my own symptoms- my gut really tells me that I do have a fistula- but you just never know.
That’s great that you are doing the diet anyway- I found it so restrictive and very difficult to follow. I agree with you about the coffee- I thought for years I had chronic stomach pain from both stress and NSAIDS- but when I stopped the coffee, my stomach felt great! That was certainly and interesting revelation- though I do love my coffee
Hi Sarah
Have you read the book ‘Finding Balance’ by Sue Hickey. The author describes her many years recovering from a series of vestibular disorders and she goes into quite a lot of detail about her surgery for fistulas. It is definitely worth reading if you haven’t already x
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| “Finding Balance” |
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