My Dr S Update

Hey gang,

I saw Dr S Friday for a follow up. Told him I was suffering bad patches on nd off and mostly around my period. He asked me to describe how I felt during the good spells (background lightheadedness, headache, aversion to lights, vision everything is in HD amongst usual every day stuff) and how I felt in bad patches (main symptom- drunk when sober, excruiating pain in face, more head pain, knackered, more of everything else).

He decided I should:

  • Speak to my GP to discuss if I can come off Propranolol which I was originally put on for blood pressure and flushing. As doesn’t want me on 3 drugs especially if we are…
  • Increase Topirimate, from 50mg at night, to include 25mg in morning for 2 weeks. After 2 weeks, increase further to 50mg in morning. I am worried about this as when I started the drug, I couldn’t handle it in the morning- totally zombiefied for 4 hours and that was at 25mg. I raised this point, he said lets see how we go, I may be able to better handle it now after being on it for quite some time… Does anyone else have any experience of this??
  • See how go on the above, there is another drug we could add that is especially helpful when you experience increased symptoms around menstruation. Don’t know what this drug is… Any one know? Anyway, this is the main reason for coming off Propranolol as otherwise I may have 4 drugs going on.
  • Leave nort at 40mg. Constipation is becoming a big problem and I don’t want to increase.
  • Arrange a pelvic scan for polycystic ovaries. I’m not entirely sure why this came up from jusy my dizzies being worse around time of the month, and it does slightly worry me, especially as my periods have become irregular but hey.
  • Limit stress. He said, if you have anything in your life causing you stress, you must find a way to eliminate it.
  • He explained that we are putting plasters over the brain and one day we will take the plasters off and it should be mended as an analergy.

He asked me if I had any questions… I said, I know that all my pills say ‘Do not drink alcohol’ on them. What’s the risk in drinking alcohol?
He answered and told me I shouldn’t be drinking alcohol. Alcohol is a depressant on its own, and the pills I’m on can act in the same way esp when combined with the alcohol… I guess it makes sense. He told me to ‘drink the non alcoholic stuff’ and ‘think about how great life will be when you’ve got over all of this’… I wasn’t expecting that answer and to be honest, have no idea how I will successfully curb the drink, but I’m going to try. Alcohol is my outlet! Though I seem to be getting drunk really easily lately so I guess I don’t need to be drinking all that much anyway.

And that is that… I haven’t upped my doses yet. I’m nervous to up the Topamax and turn into a zombie and not be able to function and I cant afford any time off work. Hmmmmmm.

I also feel a little sad about everything. This whole MAV thing is so erratic. And my boyfriend being with me at the appointment for the first time, somehow seemed to make me being ill, kind of more real. Like it confirmed I am actually sick, there is actually something wrong with me. Whereas before I could have just been making it up in my head, like I was led to believe for the last 10 years. Humph.

Ah well, better kick on with things!



That sounds positive! People who see Dr S always seem to get good advice and a plan of what to do. I hope your change in meds helps you get better and better. The fact that you drink alcohol and enjoy it and don’t want to give it up is a good thing. I haven’t touched the stuff since I got dizzy. Last thing I want is to feel more drunk that I already do! But it’s great that you can do it (even if the Dr said not to) and you should take that as a positive sign that you are doing well x

Hey this all seems positive to me - good on DR S! I try not to worry about the booze (or lack of it!) as my hope is one day we will be able to drink again!
I’ve read a lot of women on here have increased symptoms around their periods - including me, poloycystic ovaries didn’t even cross my mind. I suppose it is a consideration. Our body’s are so complicated aren’t they!


Hi MM,

Thanks for the write up! I would totally agree that being on a few different drugs is not good and that you should try to drop it down to the bare minimum. I know Baloh doesn’t even like having his patients on more than one drug for migraine. However, MAV presents differently among sufferers and within this population there appear to be “subsets” of us. I’ll post some papers a little later but this was the first I had heard of this today. So within this MAV variant, there are groups of us that may fit into different categories. This may partially explain why we all respond differently to meds as well though I suspect it’s more about our own personal physiology and our genetic make up.

Not sure I agree with the “band-aid” analogy Dr S gave you. That kind of talk fuels the loons and quacks out there who think science-based medicine “treats the symptoms and not the cause”. Of course our meds don’t cure this condition and actually don’t treat the cause but they raise threshold instead and help to stop triggers from flicking the migraine switch. To me a band aid approach is more like giving a person with a cold an antihistamine to temporarily stop the nose from running but all the while the cold is still very much active under the dried nose. If we don’t trigger a migraine the whole thing can just stop of course.

Anyway, enough of my rambling. I think it’s a good idea to not drink booze and keep it for rare occasions. Alcohol is a pretty potent trigger for most too.

Hope the meds change works out well.

Scott :slight_smile:

Interesting reply Scott. I saw Prof Luxon last week and she thinks like you. She said the drugs only stop the migraine attacks which keep scrambling the brain and then we HAVE TO DO VRT to reprogramme the brain so it ignores our old input signals and understands the new signals going in. I am not sure I agree 100%. I think the drugs change our brain chemistry so the vestibular nuclei arent “irritated”.

Hi Becks

I was interested to hear how your appt with Prof Luxon went as you said you were going to see her soon in a previous post. I hope it was useful and you got the info you wanted about potentially coming off the meds at some point. I have been trying to figure out exactly what you mention here about whether the migraine somehow scrambles the vestibular system and then it needs to recalibrate again or whether once the migraine attack subsides the balance symptoms improve. Depending on what is going on would affect whether or not it would be worth doing VRT or whether trying to relax and avoid all potential triggers and not stress the brain is best. I feel like with me I seem to have these big neurological/migraine attacks (two now) which really affect my balance/vestibular system but then I have a background of constant off balance feelings all the time x

Jem-I have not posted about my appointment because I am a little bemused about it. I don’t want to critisize prof luxon but it was all a bit confusing. I have improved hugely over the last year after being diagnosed by her. I was initially put on ami by her. I got up to 50mg but the side effects were pretty bad. I was also seeing a physchiatrist whom she referred me to as he helps people who have had chronic illnesses. He told me to change to a drug which is basically ami but is better tolerated (prothiaden, dosulepin). It is a great drug and I have been able to get up to the max dose of 150mg. I hadn’t seen her for a year and I told her the prothiaden had helped so much and she said it is not a drug used to treat migraine??? and that it is in a different drug class to ami!!! This is wrong it is a tricyclic antidepressant and along with amitriptyline and noritriptyline is used to treat migraine. I am baffled. All I can think is she misheard me?? So she then said that the only way the drug could be helping is by reducing my anxiety levels and thereby preventing me from having MAV attacks. I dont agree with this. It has directly treated my symptoms particularly my visual problems.
Do you have an appt with Dr S?, he seems to be more up to date with meds. She only offers propanolol, amitriptyline or pizotifen as treatment and will not prescribe any other drugs. As for VRT. I did it for years with little improvement followed by it making me housebound after having a bad attack and being encouraged to keep doing it! I have restarted it now and hope to see improvements as I am on meds.
Any comments would be appreciated as I am baffled!
I will post this as a new thread

That does sound confusing Becks. I have just this morning heard from Barb on another thread and she takes prothiaden and has seen lots of improvement on it, so it can’t be coincidence. Also, if other tricyclics like nori and ami help MAV then why can’t prothiaden? It sounds like she does not have much knowledge of the other drugs that can help this condition. If you are seeing improvement on it, then keep on it I say!

I am not sure about VRT. If it is as Prof Luxon says then sounds like VRT may be of benefit. Like you, I was doing it for many years with no meds and for me it made me feel dizzy whilst doing it and for a bit afterwards but I can’t really say that it helped me overall. Of course, it is really hard to know if it did. I don’t feel it made me a lot worse but then I don’t think it made me any better really. It certainly has no impact when it comes to preventing these ‘attacks’ and I think maybe only the meds/avoiding triggers will do that. I would keep doing VRT even though it’s a bit tedious if I knew it was going to help me but it’s hard to know whether it is best for the brain or not.

I see Dr Silver on Thursday so will be interesting to see his take on all this. I have read on here that his first line drug of choice is lyrica but I am already on nori so I may just stick on that for now x

I agree with the threshold approach Scott… He also talks about ‘the jug’ which is much more indicative of a threshold.

I have had 3 BLISSFULLY DIZZY FREE DAYS!!! And I havent even changed my meds yet. In fact, the only thing thats changed, is that I’m on antibiotics for severe cystitis and I’m ridiculously constipated, so on the laxatives. (too much info? sorry!)

My question is, would taking antibiotics affect MAV???