Frustration with Doctors

I have only written one post on this site, but am active on another.

I would like to ask if others have this experience. I get these brain shimmers (like pins and needles) and then body chills on one side or the other and then my motion sickness (I don’t get dizzy per se) goes crazy. Does anybody else have this?

I was diagnosed with MAV in late October and started Nortryptiline in November. I had progressively gotten better to the point that the week before Xmas I thought I was 98% there, I just had a very wierd stomach feeling (not an ache, like it was empty) and a little brain shimmer off and on. Then Wham I had really bad Migraine or whatever (not really a headache) on the 19th and again on the 24th which resulted in bad motion sickness symptoms and it is only today that I feel better. I was going to see my Neuro Otologist but he said he was only treating the Vertigo and is not qualified to treat the Migraine…hmmm isn’t the Nortryptiline used for Migraines as well as depression. Anyway I digress, I am looking for advice. I have had this since April 1 of 2008 (this week is nine months) and it has gotten progressively better but is it normal to have detours like last week, even on Nortryptiline which seemed to be working?


Hi Frank -

It’s very common with MAV to have “relapses”, even with treatment. I’m sorry, but I don’t have any personal experience with Nortriptyline (although others on this board do), but it is definitely a MAV preventative as well as used for depression.

What doctor diagnosed you with MAV? It surprises me that a neuro-oto would treat for vertigo, but not for MAV. But then again, nothing surprises me with doctors anymore. I was diagnosed with Migraine by a Neuro in Phoenix, but he didn’t necessarily think my dizziness was caused by it. It was time to find a new doc. I didn’t care what they called it, I just wanted relief. It took a while to find a doctor I was comfortable with. I think most of us have nightmare stories when it comes to Doctors, unfortunately.

I’m sorry I can’t be of more help, but don’t give up on the Nortriptyline if you’ve had results so far. It’s not so unusual to backslide, and try not to let it throw you. (Hard to do, I know). It’s real easy to get thrown into a panic when you start heading downwards again (after feeling well), but try to keep in mind it most probably is just temporary.

I hope you feel better-


Hi Frank,

So were you given Nortriptyline specifically for the dizziness or for depression? Or did the doc think you were anxious, thus causing your dizziness?

Here’s the deal with Nori: it is a tricyclic antidepressant used for depression at higher doses but is effective for migraine at lower doses (and therefore treats MAV and stops the vertigo). In some cases where depression is also happening with the MAV, and where the nori is not taking care of the depression or when the dose of nori begins to cause too much sedation during the day (and so increasing the dose is not an option), then the next move is to add an SSRI to the mix according to Dr Adleman. So you’d be on a dose of Nori that did not cause you sedation throughout the day and an SSRI (low dose perhaps) to kill the depression.

But before throwing down an SSRI with the nori, I’d use 5HTP first and see how you find that. I’m on 50 mg daily (half of the recommended dose) and I feel better than I did on an SSRI. No side effects on this stuff.

Best … Scott 8)

Thanks for the advice. It is kind of frustrating not knowing. Nice to know other people are going through this.

My GP just prescribed a blood pressure medicine propopanlol (sp?) for the migraines short term. He said the Nortryptiline is the long term solution. I feel like I am becoming a walking drug store :mrgreen:



It is funny you started this thread as I was coming to the board to ask the same thing about doctors. I have had my condition since last November only to be diagnosed this past August.

I have been to see so many doctors and with the exception of my ENT who told me this is what I have none of them seem to LISTEN or really want to hear what we have gone through.

My ENT told me to go back to the Neurologist and she would treat me for this only to find out she did not agree and after finally talking her into it she was going to give me medication and said I will see you in four months which was totally unacceptable to me. I have a very low tolerance to medication and thought I needed to be montiored much closer than that.

My primary care doctor who I really like said she would monitor the medication which guess what I could not take so now I went to see another neurologist who was “okay” but I still did not get a warm fuzzy feeling about.

He gave me the same drug you are taking but wants me to start at a dose that I think is much to strong for me as I know how low my tolerance level is so what am I to do…I guess try and cut the pill into fourths and start it at a lower dosage.
What dosage are you taking just out of curiosity…he wanted me to start on 50mg and I know that is way too much.

I am so frustrated with the medical community right now I could just scream.

I swear I have learned more on this site about this condition than from any of my doctors and it just really makes you wonder sometimes.

And yes I get the pins and needles feeling in my head along with a wave sensation in my head and today and yesterday I had the first real headache I have had in months.

I found a woman in my area who specializes in migraines so maybe I will go see her I do not know what to do at this point and I do not want to turn into a waling drug store and won’t because that terrifies me as much as this disease.


I have been on Propanolol for going on 3 years. I’ve had very good luck with it, I’m no longer homebound, the side effects for me have been fatigue and weight gain, which I’ll take any day over what I was experiencing at my worst. Did your GP say why it was for the “short term” only??? (Low BP to begin with maybe??)

No two of us are alike. What works for one doesn’t necessarily work for the next, but the key is: do your own research, learn more than your doctors even know, and don’t be afraid to ask questions. MAV is still not a very well-known disease. To those of us that live it daily its all too well known. But Doctors, as of yet, are another story.

Timeless- 4 months IS unacceptable. (Its been said here over and over - we are a bunch of people who are extremely "med-sensitive. Our brains are “over-excitable”. I would guess that 9 out of 10 of us would agree - meds (of any kind) are a major deal for us. Way more than most people. Its just the way it seems to be for us). Keep looking for a doctor that you are comfortable with. They are out there. Don’t give up. Find that Doctor thats willing to go every step of the way with you.

By the way Frank, I’m not really clear yet as to why you were prescribed what you were, for what exactly, but just so you know - my anxiety and depression resolved when I began migraine preventatives. For me, it just so happened to be propanolol. Not everyone is so fortunate. For many, it takes alot of trial and error to find what works. You’ve come to the right place - as Timeless said - you’ll find out more info here than any one doctor could ever give you. And its all first-hand.


Hi Kim,

I think all that you just said is right on the mark. No two alike and doctors pretty much in the dark on all of this which is astonishing given how disruptive this condition is to people’s lives – and probably has been for centuries.

How much propranolol are you on Kim? Has it impacted anything else besides tiredness and weight gain? Some say it trashes libido too. I’m wondering if I should try this class of drugs again at some stage.

Best … Scott 8)


I too have had a few doc and insurance companies nightmares before getting a diagnoses, but I thought I would comment on the pins and needles things you describe. I don’t know if this is the same thing you are talking about, but I occasionally get a sensation on the back of my neck like pins and needles being jabbed in. It only last a few minutes, but if I don’t do anything about it, I know that I am in for doozy of a headache soon. I basically consider it a form of aura.


Hi all

Actually I built up to 50 mg. of Nortryptiline for Migraine which I have been on for six weeks by starting at 10 mg then 20 then 50. So far no bad side effects…my wife would be happy if I got the little weight gain and sleep. I had not slept a full night since April and I have lost 30 pounds. Everybody tells me I look really thin…I am thin (my pants are kind of droopy now) but I don’t think it is terrible yet. I have kept the same weight for six months now so I think I am stable.

I like my GP. He is kind of a country doctor type. He always tells me “you are going to be fine” and to take care of myself first. He does not believe that taking Meclazine is bad (It actually really helps me during a attack). He does not know a lot about the Motions sickness part, but does not disagree with the Diagnosis. He does know a lot about Migraines since many of his patients have them.

I agree about learning as much as I can and am frustrated when Doctors refuse to explain things to me.

I hope you are all ok today.


— Begin quote from “scott”

How much propranolol are you on Kim? Has it impacted anything else besides tiredness and weight gain? Some say it trashes libido too. I’m wondering if I should try this class of drugs again at some stage.

— End quote

Hi Scott - fatigue and weight gain are really the only problems I’ve ever had with propanolol. I’m as “med sensitive” and “med paranoid” as they come.

I take whats considered a “baby” dose - 60 mg/day.
I started almost 3 years ago with 40 mg a day, with the intention of going up to 90 mg (further if necessary). 40 didn’t quite do it, and 80 mg was like taking a sleeping pill. I got results at 60. (I know some - SORRY BECKY 8) ) that are able to handle as much as 240 mg per day - but, that would never be an option for me - I’d be completely useless.

Keep in mind, prop is considered “old school” - it was one of the first preventatives, and its considered that there are many new and better meds out nowadays. For me it works (Thank God). I sometimes think, panic and anxiety were such a major part of my life before my crash 3 years ago, and if you read up on it - its widely prescribed for anxiety. Maybe thats why I’ve had such luck with it. I’m not sure. I still am of the opinion my panic and anxiety attacks (depersonalization and derealization episodes) which I had 20 years ago, long before I ever knew anything about migraines , were actually migraine. I also give alot of credit to diet changes - not just the prop. When I eat badly, I really do suffer.

As far as the libido thing - from what I’ve read, it seems to be worse for men. I personally haven’t experienced it.

As far as Propanolol goes in general - I would tell most anyone - give it a chance, certainly don’t let the SE’s deter you from a possible chance at feeling better. If you compare it to something like Topa, its a cakewalk.

But then again - as we say over and over - “Everyone’s different”… … Thats what makes this disease so horrendous.

Be well-


Hi Kim,

Interesting stuff. What sort of symptoms has the propranolol removed? Has it simply raised your threshold do you think? How would you rate yourself as a percentage most days if 100% is no MAV at all? I might consider Atenolol instead which is supposed to have lesser side effects according to Adleman.

Thanks … Scott 8)

I’m giving the natural stuff a go at the moment before I get back on the meds. My bladder condition is vastly improved off western meds - so its a bonus. I also feel no worse off meds - prob better in terms of stuffy head, headache.

However, if I have no luck over the next month or so or start feeling worse my next move will be Topa & then Propanolol - all whilst traveliing round the world!

I’m heading off on Jan 19th with my suitcase of supplements & prescriptions - no your average 25 year old eh! Its been over a year since I have sipped alcohol - good but boring!


Well I am on the baby dose right now. So far so good. I think the combination is working ok. I was really tired last night, but will see how I do tonight.

as far as Libido is concerned nothing can be as bad as the way I was when I was really sick last spring and this summer…I had no interest…which is very unusual for me. Now it is pretty normal.

I hope you all have a great new years eve with no symptoms and here is to a MAV free 2009.


Hey Luke,

You might want to consider atenolol instead of propranolol. Adleman says all the beta blockers are equally effective but that atenolol has fewer side effects. It doesn’t cross the blood-brain barrier (which makes you wonder how it works for migraine but then they don’t know how half of this stuff works anyway).

Hope you had a good New Years.

Scott 8)