Things I've learned.....I hope this helps some newbies!

I just wanted to write a quick note about some of the things I’ve learned while battling this horrific condition for the last 18 months. I have made considerable progress, however, I’m not out of the woods. I hope this does not come across as a know it all by any means. I just want to put some advice out there that I wish someone would have told me when this all began for me! I’ve seen 4 Neuro’s, 2 Neuro-Oto’s, 1 Neuro-Opto, I’ve had 2 spinal taps, trigger point injections, IV therapy, Stress Echo, the list goes on and on. I went to Duke University Hospital and they pretty much tested me for every thing under the sun.

  1. Once you have had the proper testing to rule out other vertigo causes do NOT go from Dr. to Dr. to try to find another cause of your vertigo. I did it and I’ve seen countless others on this site do it. If your MRI, ENG and other vestibular tests come back normal and you are told MAV I would treat MAV. You can drive yourself insane second guessing, spending countless hours on the internet, going to tons of Dr.'s. Don’t do it!!! :slight_smile:

  2. Regarding MAV lifestyle/diet. Do not ignore it! Especially caffeine. I cut out caffeine for about 10 months. After I started feeling a bit better I would have a coke here and there. I would immediately notice the difference in vertigo. Caffeine is a big NO NO.

  3. Read Dr. Buccholtz’s book, Heal your Migraine 123.

  4. Really go through this site. Scott and others have put up a wealth of info. You will learn more from this site than most Dr.'s. Don’t just read the posts from other members.

  5. In my opinion it does not matter what Dr. you go to. It only matters what med’s you try. I would not waste my time trying to go to the “top” MAV Dr.'s. I’ve seen so many people go to them and get prescribed the same treatment plan your GP or local Neuro could prescribe. Look at the list of migraine meds for 2012 Scott posted, print it out and take it to your Dr.

  6. Meds TAKE TIME. Getting well TAKES TIME. Sometimes a lot of time. It took me over 3 months to have significant improvement from Zoloft. I had taken Zoloft before when this first started. I got off it within 2 weeks due to worsening symptoms. I learned from others on this site that you need to give a medication a fair trial. You can get better on meds, so, so many of us have. It does take time to find the right med or med combo. Don’t get discouraged. I think Zoloft was the 11th medication I tried. (Granted I probably did not give some of the meds a fair trial, you live and learn :slight_smile:

  7. The more anxiety and depression you get the worse MAV gets. It really does. I know from personal experience and from talking to tons of others about this. SSRI’s really help as do benzo’s. Be careful with benzo’s though. Not only can they become addicting but there is a lot of info out there suggesting that they can actually make vertigo worse when used for a prolonged period of time. Plus they make you so tired.

8 ) Baby yourself. Get lots of sleep (but not too much as that can make migraine worse), eat right, exercise (as much as you can). These things won’t cure you but if you don’t take good care of yourself you will feel much worse.

  1. Magnesium. Take a Mg supp daily.

  2. This applies to the ladies- Regarding hormone fluctuations: You will feel 10x maybe even 100x worse during hormone fluctuations until (and maybe even after) you get your symptoms under control. Plan accordingly. Keep track of your cycle and be extra diligent about avoiding ALL triggers during this time. As estrogen drops so does serotonin so get extra sunlight, exercise, do whatever you can do to boost serotonin and make yourself feel a little bit better. Hormone fluctuations are the worst possible MAV trigger for most of us! Don’t make big plans during these times as you will feel at your worst and you have to give yourself a break.

I hope this info helps. I feel I’ve learned so much in my journey and felt I should pass some of this info on…Good luck!

Thank you for posting this.

Teri

Elisha
Great post!! First let me say how happy I am that you are seeing so much improvement. Awesome to hear!! Your advice is great!! I have been a bit MIA since I moved and don’t have an office anymore. I check in occasionally with my phone but it’s not the same. But after being a major presence on the board for 3 years, it’s probably time to let others have their time!! :wink:
Thanks for sharing and continue getting well!!
Hugs,
Kelley

Hey Kelley,
I did notice I haven’t seen you on here lately. I hope you are doing well! Thank you for the well wishes!

thanks for that info…it makes a lot of sense. I’ve tried many meds before settling on amitriptyline…i feel about 70% better. Working on the diet/caffiene, well, that’s hard to get used to.

:wink:

Elisha,

Thanks for the post, especially number 5. I waited for months and months to get into a top MAV doctor and was extremely disappointed with the appt. He basically told me there was nothing left he could do for me and to just wait it out. My general practitioner is still treating me and is not giving up on trying new meds. For all the newbies out there, if you can find a caring regular doctor that is willing to listen and go the extra mile, stick with them.

Donna

Great post. I too would’ve loved to see this post when I first started. And you are right about this forum. There is more information on here than any one doctor will ever have. I credit this forum for saving my life because when I found this, I was so isolated and debilitated by this illness. I felt so hopeless and depressed. I had never heard of MAV before I was diagnosed and the day I was diagnosed, I thankfully found this forum. It helped so much to hear that others were suffering the same symptoms. I literally though I was the only one in the world. Actually thought I was dying.

Anyway, hope all the newbies read this. Thanks for taking the time to post this.

By the way, I don’t take magnesium but keep hearing it’s soo good for this. Can you explain why and recommend a good brand.

Mary

Ammaretto-you can get rid of the caffeine, it’s not as hard as you think! :wink:

Donna-I remember that! It was Dr. Baloh right? I actually thought about you (and a few others) when I wrote #5. I hope you find some relief soon. I’m so glad you having a good GP helping you. My GP helps me the most as well.

Mary-It made me so sad to read your post. I can relate so much. I thought I was dying as well. For months I was completely certain of it. Obviously I wasn’t or I’d be dead by now. I thought I was the only one in the world who felt like this as well! I’m so so glad you are feeling better Mary! Those were some dark days for both of us. Gives me chills actually…That’s why I wrote this, mainly bc I wasted so much time going to different Dr.'s when I should have been focusing on MAV.

As far as Mg, It is know that all migraine sufferers are deficient in Mg. I’m really not sure the best brand to take, I just take one I bought at CVS but I have noticed a difference with it. It took about 6 weeks though.

A quick note on magnesium–it is not a cure all. While lots of migraine docs will tell you that it certianly helps some people and for the most part will at worst not do any harm (other than loosen your stools), it certainly doesn’t help everyone. I found magnesium didn’t do me any good at all. I took it for several months. And since I’m back to 100% on Topamax I’m pretty clear that the magnesium wasn’t helping me before I started the Topamax.

That being said, from what I read, magnesium citrate is supposed to be one of the better forms of magnesium in terms of absorption by the body. It is inexpensive if you buy it from some place like Amazon and is certainly worth a shot.

I wish I had read this three years ago. Your story sounds very familiar. I agree with every word you said. I really believe keeping yourself fit and healthy is so important for your state of mind. There is an obvious change in my emotional state after a workout … research has found that exercise stimulates the production of endorphins - happy chemical. On bad days I might go for a walk, others days I jump on my rowing machine or gym (although lately the loud music and lighting has been a problem). MAV has forced me to give up so much, but I refuse to let it take my fitness.

Thank You Elisha

Your post just makes me want to push harder to get this MAV crap under control

Great great post!

And so happy to hear from you.

Elisha, I love your post. I so wish I’d discovered this site in 2009 when my symptoms began! I’m with you about being self-educated, discovering Dr. Buccholz’s basics, and not “doctor hopping” after diagnosis. I love my primary care doctor, and she’s doing an excellent job treating my MAV (because I’m informed, I’m confident).

If I had to add a note it would be to find a way to get those important to you to understand this “thing” immediately. Print info from this site… I’m not sure where I went wrong, but my family thinks ??? I’m guessing when I’ve talked about MAV, I sounded like Charlie Brown’s Teacher!

Elisha – you NAILED it. Everything you said is spot on. Thanks for posting.

You’re a MAV Jedi now (not sure it’s a title anyone would want but you’ve just earned it and should now be able to move objects with your mind :lol: ). Going to make this a sticky post.

Scott 8)

Elisha, Thanks so much for posting this! I am a newbie and learning so much from this site. I think I am beginning to check these off your list. Thank you!!!

Excellent post Elisha, thanks so much. It’s all spot on information - like Migraine Management Commandments. Great work! :smiley:

Can I suggest some add-ons to the NINE Commandents (I think we need a tenth Elisha) to round it off.

  1. Regarding MAV lifestyle/diet. Do not ignore it! Especially caffeine. I cut out caffeine for about 10 months. After I started feeling a bit better I would have a coke here and there. I would immediately notice the difference in vertigo. Caffeine is a big NO NO.
    – this is a CRITICAL commandment. I think it’s also worth adding that overuse of painkillers can (apparently) precipitate the chronic migraine state and cause rebound. While I cannot say it has affected me and made no difference when I avoided pain killers completely, it is a well known NO NO for many migraineurs.

  2. Read Dr. Buccholtz’s book, Heal your Migraine 123.
    – also add The Migraine Brain to this reading list by Carolyn Bernstein

  3. In my opinion it does not matter what Dr. you go to. It only matters what med’s you try. I would not waste my time trying to go to the “top” MAV Dr.'s. I’ve seen so many people go to them and get prescribed the same treatment plan your GP or local Neuro could prescribe. Look at the list of migraine meds for 2012 Scott posted, print it out and take it to your Dr.
    – I think for some it is a real plus to find a good doctor to help guide them through the trials of meds. It’s easy to lose sight of what you’re doing and to have that expert guidance and reassurance is important. But as you said Elisha, at the end of the day, it all boils down to the same thing. Follow the lifestyle and start trialling the evidence-based meds as shown in the guidleines. There is no one doctor who can do any better than another apart from good guidance and a feeling of being in good hands, even if it’s your local GP:

http://www.mvertigo.org/articles/national_guidlines2012.pdf

  1. The more anxiety and depression you get the worse MAV gets. It really does.
    – I would add here to be aware of and AVOID catastrophic thinking with this condition. It’s happened to all of us – I will never get better, I will always be sick, my life is doomed, I’ll never be able to work again – not true and the vast majority with this junk get their lives back to a level where they can get on with it.

  2. Magnesium. Take a Mg supp daily.
    – add to this a trialling vit B2 and CoQ10. Butterbur too for which there is Level A evidence for efficacy and is supported in the Guidelines.

  3. ???

Number 10? Valium!! Juuuuust kidding. Sort of… :wink:

What about identifying triggers but not being a Nazi about it and acknowledging that sometimes there’s no rhyme orreason for what sets you off or that your triggers may only kick in when your threshold is low. On that note, caffeine isn’t a problem for everyone, or at least not all of the time.

Did I mention Lord Valium? LOL

I just got Dx at Duke…Howdy neighbor. Didn’t got through as much testing, just MRI and VNG/ENG, skipped the lumbar puncture (the symptoms just didn’t sound right to go through such a test) and ended up with Dr. Atkins a Migraine Neurologist. She is wonderful, totally understanding. Go back mid Sept for Vestibular Rehab. Have you (or anyone) done that?

Scott - Great additions to Elisha’s fantastic advice. Wish I’d had access to this stuff at the beginning of my ‘journey’ through the mav nightmare! Can it be put together in the Info Vault (?) as ‘Advice to Newbies’?

Beachgal
Glad you have found a good neuro. Regarding the VRT - is she aware you need to be stabilised on meds before this treatment? I wasn’t and the VRT made the vertigo much, much worse!

Scott - many docs/ENTs/physios suggest VRT to patients with mav without being aware that stablisation on meds is most important before starting treatment. Can that be added to the advice?
Barb