My appointment today with Dr Ron Granot

Hi All,

I had a really great appointment with Ron Granot today here in Sydney. I have been feeling pretty crappy now for months really and not managing this condition as well as I like to think I am –- always making excuses for yet another bad day. It was this or it was that and tomorrow will be a much better day is usually the dialogue going on in my mind.

But the reality is there aren’t many better days and none at all lately apart from two reasonably good days in Cairns (but with headache and pain). My life is being continuously eroded badly by this BS. So I went in to see Granot today to try and get some perspective on this nightmare once again. Even with tons of information at my finger tips and in my brain, it was a sobering reminder that one can so easily lose sight of the wood for the trees. I needed some objective expert advice from outside the box. He was great.

Here’s what’s going on:

1)I have some very bad rebound going on from aspirin overuse which I did highly suspect. It would explain why I keep waking every morning with headaches but go to bed relatively clear (note, I am a hell of a lot better since dumping that latex mattress). I’ve been knocking back about 600-900 mg daily for weeks now. Granot totally agreed and said that it was very good that I stopped cold turkey 3 days ago. My headaches are definitely less severe over the last 2 days. Granot said that aspirin hangs around in the body for a good week and that’s how long it would take to notice some significant improvement on that front.

  1. Although I don’t “feel” anxious at all or have any psychological anxiety going on that I can recognise, there is one other thing going on to suggest otherwise. My sleep is atrocious, I need to wear earplugs every night and can’t take any noise disturbance whatsoever AND I wake every morning at 5 AM with heart palpitations unable to fall asleep again because I feel wound up with my mind going 100 mph – i.e. anxious! Granot said there is definitely some physical anxiety going on. So as obvious as this seems now, I think it is very likely the MAIN reason I feel so bad the next day after a night of hell. Anxiety + poor sleep = migraine hell as we all know and I appear to have both.

To me it’s all a big circular argument. So picture anxiety, poor sleep and migraine activity all on different parts of a circle with arrows all pointing to each other on the line. One leads to the other without any one particular instigator. The trick is to interrupt this nasty roundabout.

  1. Unchecked smouldering baseline migraine activity beneath all of these other distractions which to me is like throwing petrol on a MAV camp fire which explodes into flames every time.

So the plan involves a few things: I have to practice regular relaxation somehow, whether it be meditation or doing some yoga or just relaxing activities in the evening at least. Come to think of it, another thing I began doing when this all flared up with really shocking sleep was watching Breaking Bad before bed and now I’m into The Walking Dead series which I love but it does get me seriously revved up. And so the whole night I have “walker” dreams or dream about drug addicts and murderers. :lol:

Granot wrote me a script for propranolol starting at 10 mg, said to forget about an MRI and to give Periactin a miss considering how pizotifen went. The goal is to reach at least 40 mg of prop. Hell, if I can do 10 that would be a miracle. No guarantees there but today my BP was sky high (always is at the doctor’s office) and the prop will kill the anxiety and migraine if it can work for me. I am not even thinking about this but will just dive in and give this a go (again).

Lastly Granot told me “you have no idea how many migraineurs you have played a role in getting to his office via mvertigo who have finally been treated”. He said they come from all over Australia and some international clients that all arrived via the forum. He thanked me for making a difference. Nice guy and made my day. :smiley: BTW, we touched on the nonsense out there of migraineurs being told they are all simply anxious without any recognition of migraine disease. I won’t mention names but these GPs and/or specialists exist in Sydney and elsewhere as many of you have told us on the forum.

So that’s the update!

Scott 8)

Wow, Scott - so happy to read that you had such a good consult with Dr Granot & got down to the ‘nitty gritty’ of your problems. Hope the Propranolol works for you.
I’m so pleased to hear that he acknowledged the amazing help you give to us MAVers - great to know that a Neurologist & migraine specialist is aware of the support this forum gives to so many people in providing so much evidence based information and peer suppprt - it made me ‘tear up’ when I read that!
I’m also amazed that we can email him with our ongoing questions re changing meds etc. He always replies promptly & feel he goes ’ over & above’ what a specialist does for his patients.
I agree with him about the meditation - mine has pretty much ‘dropped off’ but know that it helped the panic attacks I was having last year so it’s important to find the time to do it as my BP is also high.
He’s advised me to titrate up to 12mg of Periactin to see if that helps the visual vertigo - I think I’ll increase the dose by 2mg a week & hope that keeps the s/e down.
Good luck with your trial
Barb

Thanks Barb! :slight_smile: I have to admit I was gob-smacked when he told me he literally had stacks of new patients all of whom had mentioned mvertigo getting them in there for a proper work up. Very cool indeed.

Last time I saw him I was ultra dizzy not long before and then after starting this job. I told him today that within about 3 weeks of settling down into the new role and not freaking out that the dizziness stopped. His response was “really?” He was sort of amazed that my situ had changed from a predominantly dizzy case then to one of migraine headache and pain elsewhere now. Though I did have an aura on Monday which consisted of dizziness, derealisationa and anxiety for 2-3 hours before turning into a full scale headache from hell.

Hope the Periactin works well for you. We need to come up with some sort of relaxation solution on here that people can stick to. I know I don’t but really have to.

S :slight_smile:

Scott I am one of Granot’s international migraine patients that went to him through you/mvertigo. I mentioned your name during my first consultation with him in July and he then asked me how you were doing since you had not seen him in awhile. Anyway, I too had my last consultation with him this afternoon and he has decided to keep me on the periactin and the cymbalta. He said if I don’t notice any further improvement to replace the periactin with topamax. Great guy definately.:

Hey Scott! I started Propranolol 3 weeks ago. I started at 80 mg, taken at night. It ramps up my dizziness about 3 hours after taking it, but, when I awake in the morning it is usually gone or at least back to my baseline. It has however done wonders for my headaches. Good luck!

Scott, if Granot doesn’t give you commission he should at least give you a discount! :lol:

Thanks for sharing this Scott. I’ve had a big problem with aspirin myself. I wasn’t taking as much as you but I was taking a lot. I had to stop bc it was tearing my stomach up. My everyday headaches are not as bad now that I don’t take aspirin but it can be so tough sometimes. We have to let our natural pain endorphins built back up, although I’m pretty sure I don’t have any :slight_smile:

I’m glad you have such a great Dr. I hope the Prop helps, I took it and it really did help me with headaches. Good luck!!! Hope you feel better soon!

Hi Scott,

I’m so happy that you were able to get some answers from Dr. Granot. I hope the Propanolol helps you out. It did completely got rid of my migraines at 30 mg. but I had to get off of it due to circulation problems. My fingers, toes and lips were turning blue when I was on it. I am wondering if I could handle 10 mg. and if that would help with my daily migraines.

I just wanted to wish you luck. Please keep us posted.

Donna

Hey Scott~thanks for sharing. He sounds like an amazing Doctor and it sounds like you got some great advice about dealing with the underlying issues. I know for me, if I don’t get proper sleep, my MAV is revved up by 1000%. Last week, I took an amazing yin yoga class that basically works on the central nervous system and I was astounded at how great I felt all around. And I slept like a baby that night. I have encorporated some of those stretches/poses right before bed and they have really made a difference.

I’m really hoping the prop works great for you and you have minimal side effects :smiley: I personally promote mvertigo on twitter because I can attest to it saving my life. I was so afraid and felt so isolated, depressed and hopeless before I found this site. I will always be thankful for Feburary 21, 2012 as I met Dr Fife and found mvertigo.

Keep us posted. If you need any advice on good opening stretches to do before bed, let me know. I also need to make them a habit.

M

Like the others, I wanted to offer my thanks, Scott, for all you do to promote education regarding MAV. Moreover, providing a forum for people to vent when they are desperate and hopeless and to receive positive messages from people who truly “get it” is priceless.

I have learned so much from this forum and have shared much of it with my physician husband. I always hope what I tell him will “stick” so that if he has a patient that comes in with MAV-like complaints, he’ll be able to steer them to the appropriate specialist (and this site) for further evaluation and information. Just from my own experience, I can’t tell you how many times I was told I just have VN or “a little virus” and then it should clear up soon on its own. (I swear, when doctors tell patients they have a virus it is code for “I really don’t know what you have.”

I have also encouraged my husband to reconsider when he tells a patient that their symptoms are just due to anxiety or depression. Again, many times that just means the doctor doesn’t have the training or experience to figure it out. (My first doctor told me I had psyco-genic vertigo. In other words, I was experiencing horrible dizziness and ear symptoms because I was so anxious. Don’t you just love it? Only common decency (and the criminal code in the US) prevented me from strangling him!)

Anyway, I got side-tracked. Thanks once again, Scott. Best of luck in finding something to relieve your symptoms.

KennedyLane, I was told the same thing by one neuro in Sydney that I had psyco-genic vertigo. I was never anxious before this stupid illness so it certainly could not have been psyco-genic vertigo. Moreover, the cymbalta and time has helped me cope with the anxiety (not completely) much better than when all this crap hit me. I still continue to face the head motion intolerance, heavy head and rocking on a boat sensation when I walk and I really wish I find a med that works soon. I keep thinking to myself that I will be like this forever. Anyway, am gonna follow Granot’s recommendation to start on the topamax next month if the periactin doesn’t work by then.

I’m so glad you had a good appointment!

— Begin quote from ____

Lastly Granot told me “you have no idea how many migraineurs you have played a role in getting to his office via mvertigo who have finally been treated”. He said they come from all over Australia and some international clients that all arrived via the forum. He thanked me for making a difference.

— End quote

I am glad he recognized you, too…if it weren’t for this message board I would be so much more scared and confused right now. Thank you!

I need to make sure I keep up daily relaxation, good reminder. I used to do yoga weekly, and exercise (and red wine!) to relax. Now the only yoga pose I could manage is “corpse” but it’s a start!

Hey Scott,

I just went on a 8 weeks detox from painkillers, mainly Aspirin. It is a program on a hospital, and it was so crazy when I had the migraines. But now, after the detox I feel tremendously better. Both headache and dizzynes is better. It takes hole 8 weeks. On the 3. week I had serious rebound symptoms, like flu-feeling, constant headache and the feeling of “something needed”. I felt so junkie-like. And just for the painkillers!?
I now only can take maximum 2 times a week. But the headache is so reduced that it is all okay.
The hospital has great results.

Good luck to you :slight_smile:

Hey Scott -

I really hope this turns things around for you!!

I should practice daily stress reduction too - I’m doing a little deep breathing most days, but should do more than that because stress certainly is a trigger for me. Thanks for sharing that.

I’m one of those people who won’t put a TV in the bedroom so that I can practice good “sleep hygiene” - the bedroom is for sleep and sex only. If I’m in the living room in the evening and hubby wants to watch something “tense” on TV, I tell him I’ll have to go do something else because even a few hours before bed I need to start winding down (sometimes he’ll change the channel so I’ll stay - but sometimes he’d rather watch “blow sh-t up” shows!).

Hi gang,

Thanks for the feedback.

Well, get this. Since dropping aspirin completely I am feeling SOOOOOO much better. Just a great result. Amazing that it was making me feel so unwell overall. And another thing: the night anxiety has vanished. BOOM, gone. Sleep feels much better and normal again and I no longer wake with a headache every single bloody day.

There is still background junk going on but nothing I can’t handle. Not sure when to start getting into the prop. I need a few clear days in front of me where I won’t have to stand in front of a group drooling. :lol:

Part of my bedroom is being painted today as is the bathroom which will potentially throw a curve ball at me again for a few days. Hoping there won’t be fumes to deal with when I get home. :shock:

S

— Begin quote from “Line”

Hey Scott,

I just went on a 8 weeks detox from painkillers, mainly Aspirin. It is a program on a hospital, and it was so crazy when I had the migraines. But now, after the detox I feel tremendously better. Both headache and dizzynes is better. It takes hole 8 weeks. On the 3. week I had serious rebound symptoms, like flu-feeling, constant headache and the feeling of “something needed”. I felt so junkie-like. And just for the painkillers!?
I now only can take maximum 2 times a week. But the headache is so reduced that it is all okay.
The hospital has great results.

Good luck to you :slight_smile:

— End quote

Hey Line – you and me both. Glad you are feeling so much better too!

That’s v nice to hear Scott. Looks like the visit to Dr G paid off. Quick question for all of you, aspirin is a blood thinner. I notice plenty of people on this board taking it. Does it help the Mav or are the people on this board taking it for other reasons? If it helps mav then I might give it a shot. What do u think?

Nabeel - aspirin is a blood thinner but no longer recommended for primary prevention of cardiovascular disease with or without diabetes.

Aspirin is also a pain killer and is effective for migraine headache at approx 1000 mg for some people like me. HOWEVER, it is very easy to overuse these meds, which causes rebound and can push a person into a chronic migraine state.

NOT recommended daily but only as an emergency treatment occasionally.

S

Hi Scott,
I am new to this forum and Anna said to contact you, i seem not to be able to send PM’s they appear sometimes in my outbox, so am not sure what it is im doing or not doing :-).Also how to post on the forum , do you always have to do a send/reply to write something, like i have done this time, this is my first time on a forum which im sure you have guessed by now, hahaha .
Jane Kent

Glad to hear you are feeling a bit better. Hope the prop works for you! I guess no late night zombies for you!! The season starts back up in a few weeks…you will just need to DVR them and watch before work…

Hang in there!