My update- Topamax, Nortriptyline, Diet and The Amazing Dr S

Medication 💊 Combo's
,
1

Hi everyone :stuck_out_tongue:

Sorry for being one of those annoying people who seem to only stop by in a time of personal crisis, wail a thousand wails, grab a tonne of advice and then dissapear… :oops:

HOWEVER, I hope at least this time I am returning with some experiences that some might find interesting/a little bit useful?.. Hope so anyways…

So I kind of felt as though my neuro wasn’t really understanding how seriously this situation was affecting me, he told me that if I got another 40% better then he’d class that as success- which put me off a bit/a lot, and I just didn’t feel I was progressing as well as I had hoped after 6 months. Plus he didn’t even consider VRT- until I bought it up myself. So… I decided to book an appointment with Dr S for a 2nd opinion.

Well, I’m so bloody glad I did. What a really lovely man. So understanding, so kind. I wish I had seen him sooner- bet he’s lost count how many times hes heard that! So… a brief run down of the appointment as I know lots of people are interested to know what goes on:

Appointment:
I explained to him that I had sudden dizziness on one particular day in April, explained how I felt then and afterwards. He told me it was important that I understand what had happened and what was happening. He told me that day in April, a blood vessel in my brain stem area had gone into a spasm. It had left me with the balance damage and the ear symptoms (ie tinnitus, ear fullness, ear crackling when swallowing etc) are because blood vessels going to the ear are like end arteries- there is nowhere for them to go. He asked me if my symptoms excarbated- yes. I told him there didn’t seem to be a pattern to anything- yep normal :slight_smile:

Anyways… He also explained that feelings of anxiety etc are often seen in patients like us due to the area of brain affected… Also mood swings… I’m glad he said that- means I can chuck this at the boyfriend from time to time… “It’s my braaaaain!!!” :lol: I’m also so relieved not to be labelled by my parents as a hypocondriac anymore - I’ve had headaches and terrible fatigue for 10 years and Dr S said this has prob been going on for that long.

He also did a diagram of the jug spilling over and explained the notion that we know of things being in there and over spilling.

He did a few of those ‘follow my pen with your eyes’ tests and ‘walk in a straight line’ tests… But the one I’m pretty sure showed up some balance issues for me was when I had to march on the spot with my arms out and eyes closed. When I opened my eyes, I was half way across the room, with my face nearly squashed up against the door, and turned nearly 90 degrees to the right! Hmm! :?

He then gave me the infamous diet sheet. I already cut out cheese, caffeine, citrus, MSG and chocolate (except white choc) a few months back. But Dr S has said to be strict for now and has cut out ALL DAIRY, as well as EGGS, plus anything with YEAST EXTRACT in - which holy moly is in literally everything I seem to pick up and read the ingredients of!- as well as freshly baked bread, chianti , pineapple and bananas… Which also recommends regular sleep, regular meals, no undue excertion/ excersise and avoiding stress.

He then swapped my 15mg of Amitriptyline for 20mg of Nortriptyline and I’m sticking with 50mg of Topirimate at night as I can’t hack any Topirimate in the day (Half an hour after taking 25mg, I’m zombified for 6 hours).

A lot of what he told me, I had found out for myself, but the appointment was worth every single penny. To have the time with such a highly regarded specialist and for a professional to sit opposite, tell me that I wasn’t going mad, what was wrong with me, how we were gonna attack it, and generally understand, was amazing. Even just the understanding how this thing can totally ruin our lives is the difference. I left the appointment literally on cloud 9. I thanked him profusely, told him he was amazing. Wanted to give him a big hug and a kiss but thought he might think I was a crazy lady :slight_smile: As it turned out, I had a pretty terribly dizzy weekend, but the thing was, it was 10 times easier to deal with knowing that I’m now under the care of Dr S who knows what he’s on about.

I feel so bloody lucky to have found this forum, found you guys, been recommended the Heal your Headache book by so many people, and then consequently found out about Dr S from everyone here and end up as one of his patients.

Thank you everyone. I really mean that. xxx

2

What a great post. I wonder about that whole blood vessel thing…is that common? Or was it just that it made your brain “irritable”? I wonder how you will do on the Nort vs. the Ami? So another Doc really likes the Nort…seems to be most docs like it a lot.
I’m really happy you went and thank you for sharing. Let’s hear about your continued improvement!!
xo
Kelley

3

Great write-up missmom.

I wonder about the spasm thing too. Is there a definite loss in the one ear of more than 30% by caloric do you know? Otherwise I’m not sure how that point can be made.

Whatever the case, I’m glad he’s got you well-covered. I like the automatic to manual analogy. Very fitting indeed.

4

Missmoss,

Do you know if you’re spasming all the time and that’s what keeps the dizziness constant? Or was it one spasm a while back that just started the constant dizziness?

I’m happy for you that you got some answers. That’s wonderful! It feels good when you can talk to someone that can explain what’s going and has an answer. I like how said you will get your life back. That must have felt fantastic to hear that. Good for you and I hope to see you post a success story one day. According to your doctor, it’s only a matter of time before you do. :smiley:

Good Luck to you!!!

Greg

5

— Begin quote from “scott”

I wonder about the spasm thing too. Is there a definite loss in the one ear of more than 30% by caloric do you know? Otherwise I’m not sure how that point can be made.

— End quote

Scott, I have no doubts that Dr S is a very good Dr from all the feedback I have seen, as he clearly has a great bedside manner and builds up a good rapport with his patients. If only all doctors were like that! However, I was just wondering whether the information he gives patients, for example the spasm thing, are his own take/theory on MAV, or whether there is scientific evidence for this? I always find this aspect of MAV and trying to understand my condition really difficult. As migraine itself is still not particularly well understood, I generally assume the same goes for MAV, so although I would like to think that what Dr S says is a likely explanation, I am not sure he can be certain this is what is happening in his patients? Or I am wrong? Maybe I should start a separate discussion thread about this, as it would be interesting to have a discussion about this…

(Sorry Missmoss for digressing on your thread. I am really glad you had such a positive appointment :slight_smile: )

6

Beech,

I agree with you on how Dr. S could possibly using his own theory on the matter, however, a lot of what is believed about migraine itself is based on theory. A very very good theory at that. And the success rate Dr. S. has with his patients leads me to believe that if he is using his own theory’s on such matters, then I guess I’d have to say his theory’s are very very good as well. At least he’s looking in to MAV, right.

On the flipside, I’d love to see if we can find out how he came up with the vasospasm stuff, cause it does interest me. But it may just be his theory which is also fine with me given his success rate with patients. If it is his theory, I’d really like to hear how he came up with it. That would give us here even more knowledge of MAV.

Greg

7

Great post! Thanks for sharing.What a relief to finally find someone to work with. The spasm thing caught my attention as it did everyone else’s.Sounds as good a theory as any other I have heard about.

Wish you continued success.

8

Just curious…are you in the us or uk? This doc sounds amazing! Glad you had such a wonderful appt. Those docs are not that easy to find!!

9

I am just sort of surmising by what I have read here and there and trying to make sense of it all. It is probably not a perfect theory, but here goes: It seems that during a migraine electrical changes for some reason become triggered in the brain which causes a hyper-excitability of neurons. This is followed by cortical spreading depression, which is suppressed brain cell activity. The blood vessels expand to increase blood flow and get more oxygen in, because there is now an energy deficit. However, apparently there are some areas that do not get enough oxygen, perhaps due to those blood vessels spasming, as Dr. S. was suggesting? This is particularly obvious with the weird visual phenomenon that some people experience, it might be the lack of oxygen to the visual processing part of the brain for example. It also may be with the changes in blood flow and oxygenation, some micro-vessels in the balance area of the brain or even the inner ear itself might get damaged. That could be why exercise, if not a trigger, could be so beneficial because it is increasing oxygenation of tissues. You just have to figure out the exercise that will not wake up the sleeping MAV monster.

10

dizzitink,

I love that explanation, well put. What about verapamil for the better blood flow to those area’s. Maybe that’s one reason people do get better when they try blood pressure meds like verapamil.

Nice work!!!

Greg

11

Nice analysis dizzytink.I agree about the blood flow problem to the ears.

12

Hey Kelley,

I didn’t really ask too much, but I will enquire more next appointment…but from what i took from it, I think it seemed quite common to him.
I didn’t quite get the connection between that and migraine activity… I think perhaps migrainers are suspestible to it, as the brains already irritated and fragile, and then it’s left more so, but I could be wrong.

x

— Begin quote from “rockyksmom”

What a great post. I wonder about that whole blood vessel thing…is that common? Or was it just that it made your brain “irritable”? I wonder how you will do on the Nort vs. the Ami? So another Doc really likes the Nort…seems to be most docs like it a lot.
I’m really happy you went and thank you for sharing. Let’s hear about your continued improvement!!
xo
Kelley

— End quote

13

I’m having the whole vestibular/balance testing stuff done on Dec 9th so I won’t know til after then… But he said from the basic tests he’s done, and my tinnitus, he thinks there’s damage to the left side… I guess we’ll see after the 9th. I’m not looking forward to it. I heard the calorics are gross
— Begin quote from “scott”

Great write-up missmom.

I wonder about the spasm thing too. Is there a definite loss in the one ear of more than 30% by caloric do you know? Otherwise I’m not sure how that point can be made.

Whatever the case, I’m glad he’s got you well-covered. I like the automatic to manual analogy. Very fitting indeed.

— End quote

14

Hey Greg,

I wish I had asked Dr S this… I will do next time. I think from what he said, it was the once. But thinking about it, in September I had one time where I got sudden vertigo and the tingly hands and feet feelign and feverish feeling and heavyness, for 1 day, that then left… Exactly the same symptoms as the first time, so I would have thought it was the same thing again…

Thank you for the vote of confidence. I’m feeling pretty crap again now after the high post appointement but it’s good to read back over these responses now. Thanks again :slight_smile: x
— Begin quote from “beatles909”

Missmoss,

Do you know if you’re spasming all the time and that’s what keeps the dizziness constant? Or was it one spasm a while back that just started the constant dizziness?

I’m happy for you that you got some answers. That’s wonderful! It feels good when you can talk to someone that can explain what’s going and has an answer. I like how said you will get your life back. That must have felt fantastic to hear that. Good for you and I hope to see you post a success story one day. According to your doctor, it’s only a matter of time before you do. :smiley:

Good Luck to you!!!

Greg

— End quote

15

The more I read you guys comments, the more I want to learn about this too…

I’m also wondering if it relates to high blood pressure.

It must be theory- he didn’t do a scan for example…
— Begin quote from “beatles909”

Beech,

I agree with you on how Dr. S could possibly using his own theory on the matter, however, a lot of what is believed about migraine itself is based on theory. A very very good theory at that. And the success rate Dr. S. has with his patients leads me to believe that if he is using his own theory’s on such matters, then I guess I’d have to say his theory’s are very very good as well. At least he’s looking in to MAV, right.

On the flipside, I’d love to see if we can find out how he came up with the vasospasm stuff, cause it does interest me. But it may just be his theory which is also fine with me given his success rate with patients. If it is his theory, I’d really like to hear how he came up with it. That would give us here even more knowledge of MAV.

Greg

— End quote

16

LONDO*N! UK :slight_smile:

— Begin quote from “dee”

Just curious…are you in the us or uk? This doc sounds amazing! Glad you had such a wonderful appt. Those docs are not that easy to find!!

— End quote

17

I had to read it a few times beore my extra slloooooow maving brain would compute, but it makes totaly sense.
I would love to excersise to shift this weight I’ve piled on but how can you when the dizziness is so prominent? Anyone figured out the excersise that doesn’t wake the ‘sleeping MAVmonster’- i love that analergy!
xx

— Begin quote from “dizzytink”

I am just sort of surmising by what I have read here and there and trying to make sense of it all. It is probably not a perfect theory, but here goes: It seems that during a migraine electrical changes for some reason become triggered in the brain which causes a hyper-excitability of neurons. This is followed by cortical spreading depression, which is suppressed brain cell activity. The blood vessels expand to increase blood flow and get more oxygen in, because there is now an energy deficit. However, apparently there are some areas that do not get enough oxygen, perhaps due to those blood vessels spasming, as Dr. S. was suggesting? This is particularly obvious with the weird visual phenomenon that some people experience, it might be the lack of oxygen to the visual processing part of the brain for example. It also may be with the changes in blood flow and oxygenation, some micro-vessels in the balance area of the brain or even the inner ear itself might get damaged. That could be why exercise, if not a trigger, could be so beneficial because it is increasing oxygenation of tissues. You just have to figure out the exercise that will not wake up the sleeping MAV monster.

— End quote

18

Hi… I have started doing simple yoga a few months ago. I was unbelieving at first but I actually lost weight and it doesn’t aggravate my MAV. I bought Yoga for Beginners DVD on Amazon and it is the perfect way to start. You don’t have to do all those complicated positions to get the benefits. Take care,

Karen

19

Hi MissMoss

I’m using WiiFit - the yoga positions which don’t require head down are good for me, but mostly I do the aerobic exercises, steps, hula and some of the balance programmes. I’ve managed to lose a lot of weight when using it alongside healthy eating and walking in the past. I’ve lost more just recently despite being stuck indoors a lot of the time with MAV, and not getting in as much walking as I would do normally when I’m at work.

It is really useful and effective when you are with migraine/vertigo as it’s something you can do in the safety of your home,convenient and you can just do those gentle steps if nothing else. It’s not everyone’s cup of tea, but it’s worked out well for me in the 2 years I have had it and the balance exercises are an added bonus for this condition.

20

Thanks so much for the yoga advice… I’m def gonna try this out. Thanks x