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Have confidence that you can get 99%!

#1

I read the new posts from people new to the forum or people that just found out they have MAV. I “hear” the panic in their voices, desperation, feeling like this is never going to get better. Well, I probably wrote the most desperate posts in my beginnings, folks! I had sudden vertigo attacks, where I was on the ground, holding on for dear life, spinning like a top at 100 miles per hour. Scared to death. Dizzy all day long. Frightened, depressed, changed our lives we were so scared. Sold the house, cancelled everything, scared our kids and our friends ( who were so very kind but didn’t really understand anything about what was wrong with me). Then I went on Verapamil, then Nori, and TIME went by. I felt better, I relaxed more, I got used to it, it improved slowly. I gained some weight from the drugs, got constipated from the drugs, but stuck with them and learned to eat better, more carefully, and found Miralax ( lol)!

It’s been 10 months since I was diagnosed with MAV. I am all better. I feel all better. I have lost 10 lbs and look the same as before, I do everything I used to do, except I stay far away from known triggers such as coffee, tea, orange juice, alcohol. Yes, I’m a teatotaler but that’s ok. I misspelled that.

Don’t despair good friends! Takes time and effort but can be done. Thanks to all on this forum that helped me so kindly. Meredith

4 Likes
#2

Hi Meredith
So it was/is nori and verapamil that you are taking? What happened to Paxil?
Nice that you lost 10 pounds. Wish I would!! Any secret?
Nice to hear from you.
Kelley

#3

Glad to hear you are feeling well Meredith. It takes a lot of time and work to get better, but does happen and it is important for those just finding out about MAV to hear that it is possible.

#4

Spinning Lady this is such good news, I am really pleased to hear a success story. How long had you been suffering before you started on meds? What do you take for it - nori - and what dose? How soon after starting the meds did you begin to improve?
Hope you continue to feel so good! x

#5

hello all

I was told that i would get better and get back to my normal self. I might have avoid certain foods etc after but I would get back to normal self and live a normal life. Things might be a little bit different and you might have to be careful

There is hope out there!!

#6

Well, I have read and re-read and re-read your post, emailed it to my mum and showed my husband. I am one of those people in the depths of despair. Thank you for your words of encouragement. You have greatly lifted my spirits and put a smile on my face. Thanks again
Loved to know what meds made you better and time frames.
Kylie

#7

It’s great to hear the success stories. I was beginning to feel like I would never be normal again. I guess everyone has to stay positive and keep the hope that one day we will be better. It does take time and doesn’t happen overnight. Thank you everyone for giving me hope. You all made my day happier :smiley:

#8

Kylie I can really empathise, I too have been suffering since 2009 and thought it was labs/VN at first. Only just realised it could be MAV. I am currently on my first trial med nortriptyline and titrating up (20mg now and 4.5 weeks in). I saw you had tried various meds but say they didn’t work out. I wondered if that is because you could not tolerate the side effects or if they just did nothing for you to help your symptoms? x

#9

I had added Paxil 2.5mg ( like Scott) just for extra help last March. So I was taking 180 Verapamil, 10mg Nori and 2.5 Paxil. In June, I started weaning off the Paxil. I did that because I thought it was just adding to my gaining weight and being constipated. I had about a week of feeling a little dizzy but that went away. So I don’t think the Paxil was really doing anything for me as I feel just fine after being off it.

I had been having these drop attacks for about 3 years…maybe 3-4 each year…alternating with headache. I would get bad headaches about every 3-4 months or less and I would take Imitrex. The headache lasted for about 3 days then left me. I now look back and wonder if it was me drinking coffee and tea and wine and orange juice and smoking ( all triggers for me) but didn’t realize they were triggers, and they were causing vertigo attacks. But, it all came to a head last Dec. while I was in San Clemente, Calif on vacation. I got the 24/7 dizzy Mav symptoms. The Dr. there put me on Verapamil and vit.B2 and Magnessium . First he put me on a week of steroid, then started the Verapamil. He diagnosed me with MAV. I didn’t get the Nortriptyline until that March, when I went to Chicago and saw Dr. Hain. I got the Nori and Paxil there. He told me NOT to take Xanax and gave me Lorazapam, IF I needed it.

A combination of a very loving husband, good care, peaceful surroundings, eating well, not smoking or drinking or having coffee, sleeping well, et.etc. all contribute to getting well. I think the Verapamil got the headache and the Nori did the rest. Just what I think, but I’m not sure as I’m no Dr.

Hope that helps, JEM and Kylie.! Hi Kelley, hope you are well.

#10

Yay Meredith!

I do know we can beat this: I had a year long episode about 12 years ago now, no diagnosis, no preventative meds, only valium and alot of confused doctors, no diet info, nothing like what I have now. Only then, I did have a lovely husband to help me out and that made the stress level alot lower & think it helped the worst of it go away.

Looking back of course I see all the symptoms, piling up since childhood, motion sickness, car sick, fatigue, the balance issues, have always had a thing with stairs (depth perception did not know that till now) the headaches, a labyrinthitis in my 20’s, the ear fullness, the tinnitus, then the aura, etc etc building up until finally a case of cognitive dissonance that my body said “Um, NO, thank you!” to & wham! Right after the flu.

This time around the same kinds of things all build up only add in chronic fatigue, fibromyalgia, aphasia, insomnia, more migraines, vision problems, panic attacks and chronic “flu” so I get the flu shot! Can you say ‘Stupid’? I can!! :smiley: I got pneumonia and then couldn’t get out of bed. The rest is history.

But what your post made me think of is, last week, filling out the forms that Social Security sent me as I have been off work 9 months now & may not be able to get back within the 1 year that State disability will cover me, I was in the gutter. The lowest I have been since this started. Crying my eyes out. I’m 48 and look at what I used to do? For work and for fun. And now this? What am I destined for? An old age home or something? (I never get dramatic or anything) My life is over, tho, is how I felt. I can hardly write, and that is what I love. I want to open a Jazz club. I want to travel…you can’t do these things on SS Disability. Unless you marry that handsome prince and honey, he ain’t looking for 48 year-olds!

So thank you, Meredith, for sharing your story and that it was the first thing I read this AM, as I am going to bravely fill out an application to transfer from one department to another at work to help lower my stress & keep my life in check, so that this never happens to me again.

Let’s just hope that if I get called for an interview, I don’t walk like a drunk person that particular day… :lol:

Kathleen

#11

Thank you for your post…much needed as a started VRT Friday and see my Doc today with the hopes of getting Topamax. Will need that reminder as I’m switching meds. Good thing to read first thing this AM :slight_smile:

Judy

#12

Big help, thanks Meredith. I am going write down as much info and drug combinations as I can to take to Dr Granot.

Jem your MAV journey sounds very familiar, you poor thing! Yes I am very med sensitive which is so frustrating. I did try Nori for 6 weeks but found it made my dizziness much worse and the fatigue totally wiped me out. In hindsight I probably should have given it a little longer, but just found the side effects intolerable and made looking after my three young children almost impossible. It sounds like you are going pretty well with it. Are you getting any side effects? All the best Jem. Look forward to hearing more about your progress. x

#13

Such a great post! That’s wonderful and encouraging news. I’m so glad to hear you are doing so well!!!

#14

Hi Kylie, yes I think our journeys sound similar. I went for years thinking VN and that it would not happen again and I just needed to give it more time to fully compensate. Then this summer I started going really bad again and I started looking at other people on the forums I was on who had all been diagnosed with MAV that’s when I found this great site and started to learn that MAV could present without headache and could cause chronic constant dizziness and I went to my doctors and got a referral to Dr Silver. I asked to trial the nori myself and so far, so good. I have had a racing heart & shortness of breath when I started and when I up the dose. I also have a dry mouth but it has really helped my neck pain. The dizziness has improved a bit in the last few weeks because I had been bed-bound for a month with it. I am now doing a bit more but still v dizzy and got a long way to go. You said in your earlier post that you are really down right now, I hope things start to pick up soon. What a shame that the meds you tried didn’t agree with you. There are more to try though…have you decided what you will do next? x

#15

Hi Jem
I was on Nortriptyline and had side effects like you - particularly the heart racing. I switched over to Prothiaden & found I tolerated it really well - has taken me a long time to get the dizziness under control - upped the med by tiny steps. I’m pretty sure it is available in UK. Supplies have ceased in Oz but taking Dothep (110mg)which is the same med.
Dizzykylie
Dr Granot has added Periactin which is also helping the visual vertigo. Good luck with your visit!
Meredith
Thank you for your encouraging post - I’m aiming for 99% too - not there yet but definitely on the way.
Barb

#16

Barb, I’m sure someone else here said they were on Prothiaden and like you had good results. It is definitely one to bear in mind if I can’t tolerate the higher doses of nori. What dose of nori did you get up to and how long did it take for your dizziness to resolve/improve on it? x

#17

Thanks for the inspiration:)

#18

Thanks for the encouragement!!! I just started Topamax and Im optimistic.

#19

Darren, I thought you started Topomax on Sept 17th. You said on your recent post that you just started it. Did the first try not work for you? Just curious, Darren. I sure wish you luck with it, though. I thought about that drug long and hard, but never did start it. I think it was hearing about people having trouble “finding words, not getting their thought out properly, and memory loss”, that put me off. I have enough trouble with that already.
Meredith

#20

Hi Jem,
Took about four months to get up to 50mg. That helped get rid of the daily migraines but didn’t do much for my dizziness!
Only noticed a difference after I swapped to Prothiaden and got up to 75mg, even better at 100mg but not perfect - got up to 125mg & things improved a lot. Unfortunately, couldn’t tolerate the side effects so went back down to 110mg & began Periactin. I have had significant balance/dizzy improvement since adding the Periactin on 1st September starting at 2mg. Am now up to 8mg & Dr Granot said to try for 12mg. Side effects on upping the peri are minimal - headache/sinus pain/slight ear fullness & nausea lasts for about 2/3 days each time.
My specialist in SA told me that Nori was a stronger med than Prothiaden so might account for going for the higher dose.
Hope this helps.
Barb