Yikes! I’m gonna say a prayer for you about that one.
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Pah! Get that checked out … but … pah! 
On the basis of what test did he come to that conclusion?!
Based on the fact that I don’t fit the VM or MAV diagnosis. And because all of my vestibular tests have been fine. And because I recover so quickly from my attacks, with usually no residual dizziness (and never any of the other symptoms you all describe, such as the rocking, swaying, push/pull feeling, brain fog, etc.).
Hi All,
Sorry it’s taken me so long to re-post on here - I wasn’t aware I had any replies until I saw them all sitting in my inbox!
It’s been relatively good news for me. I managed to convince my neurologist to try me on carbamazepine before any of the other drugs used to treat migraine (amitriptyline, topiramate etc). So glad I did, as since I started taking it (August 2017), I’ve had one single spin, and you could barely even call it a spin. More like a wobble with a bit of staggering. I was having the attacks roughly once a month, and much more severe, so this is a massive improvement. I’m now able to drive and swim again, and don’t worry about having an attack all of the time. Because I responded well to carbamazepine, I fit the diagnostic criteria for VP.
By the way, to those people talking about diagnosing it using MRI/MRA to find vascular loops - I’m not sure this is strictly correct. Although it does identify a loop if it’s present, there is a significant proportion of the general population who also have the loop. The test is therefore sensitive, but not very specific.
If any of you are struggling with these quick spins, I’d really recommend trying carbamazepine. It has essentially changed my life. Oh and stick with it through the horrid tiredness - it gets much better 
Oh, @Bex85, THANK YOU SO MUCH for your reply. You don’t know how much you may have helped me (well, yes, you probably do).
My attacks come once every couple of months. My husband and I have both read a bunch of articles and papers and most of them described the attacks as happening multiple times per day. I’ve never had that.
I’ve stopped driving because we’re afraid of what would happen if it happened while I was behind the wheel. And it’s interesting that you mentioned swimming. We are both avid swimmers and when I saw the neuro-otologist a couple of months ago, I mentioned to him that we are competitive swimmers and swim both in pool meets and in open water races, and that we swim on a weekly basis in the ocean. He said, “You shouldn’t do that.” I said, “Shouldn’t do what? Swim in open water?” He said, “Yes, if you had your face in the water and had an attack, where you couldn’t tell up from down, you could drown.” I told him that I would not be giving that up.
I read the side effects for carbamazepine and they sounded awful. So you had drowsiness at first, but it resolved? How long did that take? (I went through that years ago with a med for a different problem, so I can do it again.) Did it cause any other side effects?
Hi Manatee!
So glad to hear I may have helped you!
Carbamazepine is my hero - I can’t stress that enough. Like you, I was afraid to drive for fear of causing an accident, and I was afraid to swim in case I drowned. I was also afraid to be in meetings or in public without anyone I knew in case I caused a scene by one of my spins happening - I don’t know about you, but they were so sudden and severe that I would cry out in surprise - it could be quite embarrassing…
When my neurotologist thought I had VM and I wasn’t convinced, I contacted a doctor in Germany who had written several papers on VP - Michael Strupp, if I remember rightly - and asked if what I was experiencing could be VP (because I too had read that the spins in VP tended to happen more frequently than mine, and I was also experiencing some milder dizziness symptoms between attacks). He didn’t directly answer the question, but said I should try carbamazepine. Thank goodness I did.
The list of side effects for carbamazepine does look fairly horrendous, but the only one I had was drowsiness. That was fairly severe, I will admit - very difficult to stay awake whilst sat at a computer or in a meeting at work, for example, and staying awake past about 9pm was impossible! They started me on 200 mg to minimise any side effects, and increased the dose by 100 mg every two weeks until I felt some effect on my symptoms. I stopped at 600 mg per day. I’m going to ask to increase the dose to 800 mg to see if that cures my spins completely (as I had the one very mild one quite recently). The tiredness reduces significantly after the first week or two of increasing the dose, but I do think that even now, 7-8 months since starting it, it still has a mild effect. I was a terrible sleeper before, and now I sleep like a log - a positive side effect, if you like!
I know exactly what it’s like to be in your shoes. I felt very alone when I was having my spins because no one else seemed to have the same thing. It made me feel depressed, and being unable to drive made me feel isolated. I hope so much that if you give carbamazepine a go, it has the same positive effects for you. My fingers are well and truly crossed for you. Happy to answer any other questions if you have any x
I have several of Michael Strupp’s papers saved on my computer. That was a good idea, to contact him. I’m going to print your comments and take them with me when I see the neuro next month.
Yes, the attacks are both dangerous and potentially embarrassing. I had one at work and it really shook up my office mate. She thought I had passed out because I fell to the ground. That time I had the presence of mind to purposely squat down, to avoid an actual fall, so to her it looked like I was falling but it was sort of on purpose. My attacks happen SO quickly that I don’t have time to even think about reacting. The one thing I know I do during an attack is to close my eyes - my vision is so scrambled that I don’t think it would be possible to keep them open. And then even with my eyes closed it feels like I’m falling, and if I’m holding onto something, like a table, it feels like that object is falling with me. It’s really bizarre.
I felt a bit awkward contacting Michael Strupp, but I thought I had nothing to lose. I sent him a brief email saying I had read some of his papers and would be grateful for his opinion. Part of me didn’t even expect to hear back.
Your attacks sound very similar to mine with respect to your falling sensation. My first one was the worst. I felt like the building was collapsing. I think with VP the attacks are generally all quite similar to each other. For instance, I always spin to the same side (to the right), and always in a vertical rather than horizontal plane - so I feel like I’m spinning upside down and back upright again, rather than around in a circle as if I was on a roundabout. And like you, my vision is totally scrambled.
Really hope you get somewhere with this…
Yes! It’s not a spinning feeling. It’s a feeling of falling forward, then sort of forward and tilting to one side. Mine are so quick. They’re over in probably 15 seconds or so. Oh, my, it’s such a relief to meet someone who experiences the same thing.
I saw the neurologist yesterday and he agrees that I may have vestibular paroxysmia!
I waited two months to see this guy. A couple of weeks ago I mailed his office a copy of all of my previous test results (all of those balance tests, ear testing, MRI, etc.). It was almost 50 pages. With it, I included a two-page letter to the doctor where I explained my 23-year history of (mis)diagnoses. In the letter I mentioned that I had recently read an article about vestibular paroxysmia and that my husband and I both agreed that it seemed to fit my symptoms better than anything else.
I hadn’t corresponded yet with @Bex85 when I wrote the letter. After she so kindly provided me information about her attacks and her treatment in the posts above, I was even more convinced that this was probably my diagnosis. I read every PubMed article that I could and I printed several of the ones written by Michael Strupp. I also printed some of the above discussion thread where Bex85 explained what dose of carbamazepine she started on and how she tapered up. I took all of that with me yesterday.
When I got there yesterday, a nurse first called us into a room where she took my blood pressure, temperature, etc. Then she asked us to go back to the waiting room until the doctor was ready. He came out himself and led us into his office instead of an exam room. We walked in and had barely sat down when he said, “I’ve been reading over the documents that you sent. I think your diagnosis may be correct.”
I looked at him and said, “Vestibular paroxysmia?” He said yes. So we talked for a while about my symptoms, history, etc. He agreed that I should try one of the drugs. I pulled out the printouts of the above posts and told him about Bex85’s description of her attacks (which sound almost identical to mine), her drug dosage, and how she tapered up, and he read all of that. Then I gave him the articles written by Michael Strupp, and an article from Dr. Hain’s website where he has a little chart listing four different drugs, the dosages, and some comments about each.
He decided to start me on oxcarbazepine. I am starting at a low dose and will work my way up.
He did say that I need to watch for any allergic reaction. I am allergic to three different drugs and he said that might make it more likely that I could be allergic to this. So I have to watch for a rash and stop the drug if that happens.
I am really hoping that maybe this is finally the answer to my mystery. And I am keeping my fingers crossed that I will be able to tolerate the drug. I took the first pill this morning and so far, so good!
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Way to go, Anna!!
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Years of research bears fruit finally. Anna, hope you fix this thing for good.
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Godspeed!! You’ve tolerated it for long enough!
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By the way, I found a paper that the great Dr. Timothy Hain wrote in 2004 about vestibular paroxysmia:
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It would be great to have several more ‘Hains’ and ‘Salts’ in this world!
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DARN, DARN, DARN! (That’s not what I really wanted to write.)
I think I’m having an allergic reaction to the oxcarbapezine. Today is Day 11, and the first day I went up to the next-higher dose. I noticed that my arms and stomach looked a little funny and when my hubby got home he confirmed that I’ve got a rash on my stomach that looks like a drug reaction. 
So I’ll stop the drug and call the neurologist on Monday. Unfortunately there aren’t many other options for this so I’m not sure what he’ll suggest.
Sorry to hear Anna. Go back to the lower dose and stay there longer…There is one more drug…my memory fails me…rhymes with oxcarbapezine
oxcarbapezine is anticonvulsant family so there will be some side effects
From Hain site
It is the author’s view that a trial of treatment with oxcarbamazine (an anticonvulsant that is a sodium channel blocker) is usually indicated for the index symptom of “quick spins”. This was also the suggestion of Hufner et al (2008). Addition of baclofen may be reasonable if there is a partial response. Other treatments of neuralgia, such as other anticonvulsants (carbamazepine) may also be considered. We have had some success with Keppra. (levetiracetam). A new medication called “eslicarbazepine”, was FDA approved on Nov 8, 2013. It is suggested to cause less side effects than either oxcarbazepine or carbamazepine. As Oxcarbazepine has side effects only on very rare occasions, while we like the idea of safer drugs, right now the cost-benefit ratio is strongly in favor of oxcarbazepine. All of the drugs related to carbamazepine have low sodium as a common side effect. While it was first thought that this hyponatremia was due to too high ADH, as ADH levels are normal, it is now thought that this is due to increased sensitivity to ADH. It is rare that hyponatremia associated with oxcarbazepine results in clinical symptoms.
While there are many alternative medications for neuralgia, there is little motivation to explore them as oxcarbamazine is generally very effective and safe.
Thank you. With allergic reactions, you never want to continue taking the drug (at any dose). (Unfortunately I’m kind of an expert on this, as my father died from something called Stevens-Johnson Syndrome, which is basically an allergic reaction to a drug that keeps going even if the patient stops taking the drug. If you Google it, be warned that the photos are horrifying.)
The neurologist warned me that I might be allergic to this one. I’m allergic to three antibiotics and he said that increased my chances of being allergic to this drug. He told me that if I developed a rash to stop taking the drug, take Benadryl, and call his office.
Definitely stop. SJS is extremely serious. One of my kid’s friends spent two weeks hospitalized with SJS after a bad antibiotic reaction.