First time to this site and interested to hear from others DR s and Nortripyline

0300hrs on 7th March 2016 I woke from my sleep with extreme dizziness, a feeling as though I was on a waltzer ride at a theme park. I have experienced BPPV before but it usually happens 2-3 times a day lasting no more than 20-30 second bursts, I have experienced this maybe 10 or so times previously in my life. However this time was different, it was occurring every time I moved and lasted much longer, it was extremely intense and very debilitating. I spoke with my doctor who believed this to be BPPV and said that I should visit a chiropractor.

Since that date I have been prescribed various medications from steriods to contraceptive pills. I have had 5 x BPPV repositioning sessions, 2 X MRI scans, a CT Scan, approx 5 blood tests and I have been seen an ENT and Optometrist, all results came back clear.

This in a way was all great news but left me feeling very worried. I knew I was unwell, my dizziness was making life difficult and I felt/feel like my body is trying to tell me something is wrong, but no-one, not even specialists could tell me what!

After all of this I eventually found Dr S and paid to see him privately (app 03.11.16). I too feel like he understood my condition and seem to relate to my symptoms without issue. He has diagnosed me with MAV and prescribed me 10mg Nortripyline before bed and the diet.

I have been following the diet and taking the drug religiously. I feel no different my dizziness is constant, I feel like I am being pushed constantly and dizzy. I am still working but it is getting to a point where I might have to stop if this doesnt help.

Can anyone tell me how long it took for the nortripyline to start working ? and what is the average dose?

I am so so desperate to help myself but nothing seems to be working, I am a 35 year old woman who is/was fit and healthy and I wouldn’t even have said I was stressed ? So this whole thing has been a total shock to me.

Any help I would be grateful

Thanks

Polly

Hey Polly. Couple of things:

BPPV can create Hydrops as a complication. I suspect that’s what has happened to me. See Dr. Hain’s site:

I have been told by two ENT’s I may have a ‘bit of Hydrops’. I’ve had chronic dizziness for a year. It is getting very slowly better.

10mg sounds a very low dose: did your Dr. discuss going up until you found a better balance with symptom control? I take 20mg of Ami which I read is dose equivalent. Any less and my symptoms are too disabling (can’t work as can’t use computer)

There are plenty of recovery stories, so keep positive.

Sorry you are going through this,

James.

James

Thanks so much for your quick response, its genuinely so nice to link to people who are / have experienced the same horrible symptoms. I will take a look at the website.
As for the dose, I believe I can go up 10 mg every two weeks until I find the right amount for me. I know its only a few days (Friday I can increase), but as I am sure you know every day can feel like a lifetime.

I too have read and take comfort from the recovery stories. My only concern is many seem to have a instant effect. I was so hoping for that, but 12 days into Nortriplyine and I feel no effect at all. I think that is what has knocked me.

I will keep taking them as Dr Surenthiran perscribed and try to keep positive !

Good to hear from you and keep well

The effect Ami had on me was felt within 4 days and upping the dose delivered further improvement.

I would definitely see how you feel at the next level up. Good luck with it!!

Hi Polly, I take Nort and im currently on 100mg to enable me to lead a seminormal life at present. The tablets normally take 3-4 weeks to start working properly. I started on 10mg and gradually increased every 4 weeks until I was around 90% better. Hope that helps.

I have had great success with Nortriptyline. My doctor puts me on 25 mgs. for three weeks, then 50 mgs for three weeks, then 25 mgs for three weeks and then 10 mgs. for a week. I then go off for a year or more. I am also on the diet and try to reduce triggers like head motion and heat and other things. Good luck to you and hang in there. My doctor never begins with 10 mgs, seems too low a dosage. This last July, when it was very hot and I felt symptoms returning, he put me on 25 mgs. for 3 weeks and then 10 mgs for several weeks. That worked very well since I caught it early. and I am always on the diet. (vertigotalesandtastes@blogspot.com)

I have recently started taking nortriptyline. I was on 10mg for 3 weeks, then I went up to 20mg for about 10 days, which bring me to the present. So far I really haven’t felt an effect, they don’t even make me drowsy (a shame b/c I was hoping they’d help me sleep better too). But I am going to stick it out at least another month, as per others’ recommendations. Good luck to you!

Hi There’
I’ve been on a trial of Nortripyline for about 6 weeks. Started at 10mg and now upped to 20mg. I find it helps with motion sensitivity. I still have 24/7 symptoms but I do feel a difference. I have hydrops as well as MAV so I believe I will always be somewhat symptomatic. Good luck!

Glad you are getting results NYGAL! Has your Hydrops decreased at all over time? Do you know how it may have started?

Polly I could have written this myself :frowning: I too paid to see Dr S when tests, ENT appointments and MRIs came back without answers. I’ve had a mare with meds, I won’t lie, but have improved regardless with diet and trigger reduction. Dr S prescribed Lyrica which I did not tolerate and today GP has taken me off Nortripilyne and I am now on Propranolol alone. I struggled through work all summer but had to give in in September. I am hoping to return in December. I can sympathise. I would say really concentrate on reducing triggers. Many will mention Heal Your Headache, the book that helps understand triggers and thresholds altho admittedly goes possibly too far with diet restrictions. I’m doing them all anyway, I’ll try anything! Also taking Magnesium chelate and COQ10/B2. Some Neuro’s also make a point about caffeine. None. No decaff. Nothing. Just a thought. I wish you well in your recovery. Tasha.

I don’t know if I can mention another site but there’s some really positive people on a couple Facebook groups who I’ve found very supportive and insightful. See the My Migraine Brain website.

Hi Turnitaround!
I had ECOG testing this past March which showed high S/P ratio bilaterally. I have two additional consults in the past two months with very experienced Otoneurologists and they disagree with a hydrops diagnoses.They feel it’s all MAV. i believe it’s a bit if both. Not sure how I developed but my rheumatologist is sending me to a otoneurologist who specialty is autoimmune related Menieres. I have some autoimmune issues so he thinks it’s all related!
How are you feeling? I know your dealing with hyroosps as well.

Well perhaps we need a hydrops thread, haha.

I have the same disagreements between consultants: out of four one said maybe, one said a touch of hydrops possibly and one said definitely secondary hydrops. Two said maybe MAV, one said definitely MAV. So take your pick.

My condition is improving but in a roundabout way. My tinnitus is generally improving but really fluctuates. I even have hours off now where the tinnitus backs off and has a character that I can totally ignore it. My balance also generally improves but I have occasionally bad days and the very odd attack.

If you ask me I think it’s multifactory. I have elements of BPPV, migraine and hydrops.

Perhaps the BPPV is causing the other two.

Yes, a Hydrops thread might be in order although they say we’re a rare breed…I wonder about that!! My tinnitus is always there but varies in frequency. Do you have nystagmus upon exam?

No, but I worry that’s because the Ami is now heavily suppressing it.

I doubt Hydrops is that rare too. I bet any blockage or inflammation of the inner ear could give you a level of hydrops as there is nowhere for swelling to go as it’s all in bone.

And I don’t believe MAV is central in origin. Imho of course.

I met last week with a fine otoneurologist, I believe my 5th opinion at this point. He examined my eyes very carefully with goggles and videotaped . Apparently, I have upbeat nystagmus(central in origin) and spontaneous nystagmus (peripheral in origin) He concurs MAV diagnoses with damage to inner ear from migraine. He also mentioned BPPV but did not see upon exam. Go figure, I’m all over the place with these findings. As are most of us… I agree that BPPV causes “irritation” hence, perhaps causing Hydrops or Menieres in severe cases.

But you know it may all just calm down whatever it is! Mine is definitely calmer. But not calm enough for my taste!

Btw NYGAL it was explained to me that the tinnitus is the noise you get from pressure on the nerves from the elevated pressure in the inner ear. Given that can vary, it makes sense the sound would vary. Mine is pulsating when at its worse. It has declined over the year I’ve had it but that might just be because I’m more used to it.

However recently I seemed to have noticed a slight improvement in my hearing of high frequencies. I will look forward to my next audiogram.