Hi there old dizzy friends (Adam I included you in the title because I wanted you to read this message too).
Thought I'd just post an update and let you know that I have CLOSURE! What a big word for this condition. As you know, I pretty much self-diagnosed (through the expert cosultation with many on this board, mainly Hbep!) that I have MAV. Well, I went to see Dr Waterston a week or so ago -AdamW referred me to him) and to cut a long story short he confirmed my self diagnosis. He also gave me a copy of his medical paper which I couldn't get my hands on over the internet! He said the way to go is migraine drugs - basically try a variety of them at various dosages until you find one that works. Having taken amitriptylene and pizotifen (Sandomigran) in the past I know this to be true. Unfortunately this is not an option for me right now as I have just discovered I am pregnant with baby number 2! Very exciting news although a tad earlier than expected this time round. I'll have to put off the experiment with migraine drugs for another couple of years. Having said that I mostly feel ok. I've had some bad phases over the past few months as I always do, but generally I have to say that I can cope with my symptoms without drugs 90% if the time. Each time I get to the point of thinking "ok, time for drugs to deal with this rubbish" it clears up for a while. Also, i know that from the second trimester until the birth I'll feel absolutely no dizziness - what a nice thing to look forward to, and another form of confirmation that it is indeed MAV according to Dr W. Anyway, I feel as though I've investigated my condition enough and that no more investigation is necessary - isn't almost 4 years enough? Oh, there is one more avenue I can try. Dr Waterston referred me to a maxillo-facial specialist who I'll see in an attempt to curb my jaw clenching night habit. He reckons this could be a major trigger to the MAV but not the main cause. Might as well give it a bash.
Hope you are doing well. Would love to hear from you.
Jen

That's great news Jen.. it sounds like you're basically in control now and have options if things ever become a problem.

Congrats on the new baby!

Dr Waterston is a good guy.. really helpful and down-to-earth. I'm amazed that he actually replies to any inquiries I make with him.. very impressed! His paper is the one I have on my site (which I can't link here).

Jen:

I don't drop by that much but was thrilled to see you posted. Wonderful news you are able to put closure on this. Really great news to hear about the baby. Can not believe we have been around this long to know of a second baby coming :) !!! I remain at 97% - many 100% days. Oddly enough this is a week that has escalated my symptoms. It has been very hot and humid. I have also been through quite a bit of stress so I imagine that is a contributing factor also. But I don't let it bother me anymore. Of course if I get that blip that stops me dead in my tracks....I tend to get anxious. That hasn't happened in quite a long time. I stopped taking Nortriptyline about a year ago and didn't notice an increase in symptoms. It probably only served as a great sleep aid. I have noticed a decrease in Migraines since I am in my mid 40s. Probably getting close to the time when you know what happens. Oh well.....just have to keep rolling with the punches life throws you. Anyway....glad you popped in and keep us posted.

all the best,
Kathy:D

Hi Jen, Kathy and Adam,

Great to hear how you're all doing and that you're well. I also only pop in occasionally now, it's always great to see some of the original faces I met when I first found the site.

Jen, huge congrats on baby number 2. Like Kathy, I can't believe we have been in contact long enough to hear of the second baby. I am just hitting the four year mark myself. I am also doing good. Like you, Jen, I now feel I know what I have - the last consultation with that fab neurotologist pretty much confirmed it. It is Vn and migraine, but migraine is now the main cause of my dizziness. The beta blockers that I take daily have - touch wood - made all the difference. I mostly do fine. I have the odd daily tiny blips, bits and pieces of dizziness, a bit of vertiginous stuff, spacey moments, but now I know what's going on and I mostly feel normal, I take it in my stride and don't stress. Like Kathy, if I get a more considerable relapse then I can still panic, but touch wood, that hasn't happened since the beta blockers. I am back at work full time and this isn't getting in the way. I live within certain limits - no migraine trigger foods, make sure I get enough sleep, and I have to admit I would avoid a salsa dancing class or a rollercoaster. The biggest problem I have is I get much more tired than other people - partly the drugs, partly the fact I have this condition, but being tired seems a party in comparison to what I went through. You'll all know where I'm coming from on that one.

Jen, an interesting thing I heard the other day at my check up with neurology. The neurologist said they are advising migraineurs to take vitamin B2 and co enzyme Q10. Interesting to hear this from an actual neurologist as they can be so sceptical about 'alternative' help. He said there had been some very convincing medical studies to show they really helped. Might be of interest to you with the pregnancy. Can't imagine a vitamin is contra indicated, don't know about Q10, but I'm sure it's easy enough to find out. Oh yes, he advised me to try one for a month or so before adding the other. He hasn't sent the letter to my doc yet so don't know which one I'm supposed to go with first. I guess it's to see if one on its own is enough.

Anyway, I am a dab hand at jinxing myself and always worry about posting good news on here as I've done that before and suddenly been hit with the dizzies. But wanted to tell you how I am so thought I'd throw caution to the wind.

Stay in touch Jen, it's always great to hear how you're doing.

Hi Jen and Hbep,

I don't mean to log onto your post (Jen), but wanted to mention something that Hbep said about the coenzyme Q10 and B vitamins. I read a big report about this too, here in the US from one of our big time herbal/vitamin doctors. He wrote a report that linked studies of improvement in migraineurs to the coenzyme Q10. Wish I could remember where I got that report from.

I have taken a multi B vitiamin since the start of my illness (Jan. 3, 2005). After reading this report, I switched in January 2006 to a multi B vitamin with coenzyme Q10 in it. As the months went on my headaches/pressure improved (not totally gone, but much, much, much better than last year). Then a month and half ago, I ran out and decided to use up the rest of the plain B vitamins I was taking. Well the headaches and pressure got a little more intense most recently. I don't know if it is coincidence, time passing, the Q10 or what improved it this year, but I recently ordered some more of the Coenzyme Q10 and have started back on it. I have been under some stress so my headache/pressure could have ironically just naturally flared up too.

Interesting your doctor mentioned this hbep as many doctors dismiss natural stuff like this. I will let you know how it goes in a few months of being back on it.

I'm due to start to wean down off my low dose of klonopin starting the end of September and see my neuroto in December. If I have a hard time coming off the klonopin or I'm not fully recovered at the 2 year mark, I think I'd like to take the MAV route and try some migraine preventatives. I am better and am hoping it is just pain from nerve damage as I have just continued to have an upward improvement over time (too long of time) which I believe from reading some of your posts (hbep and a few other migraineurs) this wouldn't be the case for a person with migraine. Anyway, I'd be interested in talking with you more hbep if that time approaches to gather some information on preventatives as you've done so much research and tried some things yourself.

Take care and I hope you continue to improve with that beta blocker, hbep.

Congratulations on the pregnancy Jen. I'd be interested in hearing how you are feeling and how the pregnancy goes with this condition as you enter each tri-mester. I so much want to have another one and my clocks ticking, but am terrified after this horrible ordeal. I wish you the best of luck and my thoughts are with you for a perfect pregnancy and feeling well through it all.

Take care all,

Gloria

Hi Hbep, Kathy, Adam and Gloria

Great to hear from you all. So glad to hear that everyone is doing quite well at the moment. We have known each other a long time haven't we? :) My dizzies started in Oct 2002 and I first posted in Jan 2003 when I had just turned 30 years old, hence Jen30! I should change my name to Jen33 now!

Hbep, my doc mentioned blood pressure tablets as a form of migraine prevention - is that what beta blockers are?

Gloria, I currently feel absolutely revolting but it has nothing to do with the dizzies, just nausea, nausea and more nausea. I don't enjoy the first trimester very much at all! Having said that, I'd choose it over a phase of the bad dizzies...I think :) I'm looking forward to all the energy and happy endorphins that accompany the 2nd and 3rd trimester, well for me anyway. It's such a good feeling.

Again, great to hear from my old dizzy friends. Will pop in some time and say hello again.

Jen

Hi Jen,

Yes, the beta blockers are used for blood pressure, although they discovered they worked for migraine as it's a condition that causes expansion/contraction of blood vessels. I take propranolol - although there are other drugs in the same beta blocker family. Working from memory there's another drug of a different type used for blood pressure (I think) called verapamil which they also use. I know Adam often mentions that one to people as it has a low side effect profile.

I've actually just had one of my mini set backs, brought on by the stress of a work deadline. Had a dizzy weekend - when I'm like that - head full of fog and disorientated it reminds me how horrible it was to be like that all the time. Stress and my period still have the power to upset the applecart for a few days.

Sorry about the pregnancy induced nausea. I know how grim that is - when I first got dizzy I was horribly nauseous all the time. It sucks.

best,

Hi Hbep

Im glad you are feeling better these days.

I have had labs for a year now and although I am loads better, I have kind of plateaued...and dont seem to be able to finally kick it, which is driving me nuts.

Could you possibly recommend that Neuro-otologist you went to in London.

I would like to see him, as he might have some information which could help my recovery.Maybe I have MAV or something.I just dont want this to drag on for years...if there is something else I could have done.

Thanks

HBEP:

I take Verapamil for MAV 180 MG's . This is considered a Calcium Channel Blocker. I grilled my specialist who said that Calcium Channel Blockets have a success rate where 75% of the patients who become stable on the medication for at least 6 months can ultimately come off the medication symptom free. There are some minor side effects. Only one I experienced is urinary retention mild which I need to follow up on periodically so I do not get any UTI's.

Howie