So basically, at 24, this it the rest of my life, huh?

Thank you all for your responses. So much information to take in and consider. I just need to realize that this is my own particular case, and no one elseā€™s. Thereā€™s no cure for it, but itā€™s is possible to continue living like a normal human being, without constant or even frequent symptoms. Thatā€™s all I ask for. Iā€™m excited to try other meds. One down, 40-something to go. Thereā€™s still plenty of options.

Just out of curiosity to anyone who has commented on this thread, are you all able to work full time with MAV? Thatā€™s one of my main concerns, really. Iā€™m eager to graduate college but anxious to face an 8-10 hour workday with this until it gets under control.

hi there
Just my experience, but i have got better on MEDS with MAV; i still have good and bad days, but more good than bad. I have got better on my first drug (Nort); by no means am i perfect, but throughout my MAV journey (3 yrs) i have probably had only 2 weeks off work sick (in total) and i work 4 days a week. I have accepted i have got it, and have made lifestyle changes because of it, but iā€™d rather that then struggle and not enjoy my 2 young children.
I have realised that we all have varying symptoms so its difficult to compare with each other; each case is unique as is the treatment by each of us.
I dont believe its the rest of your life, i just think you have be patient, find what changes you need to make, work out what meds will work for you, and get better, which you will do over time.

Nick, yes I work full time and have also started a masters since my diagnosis. Not only that Iā€™m self employed so no sick leave safety net :smiley:

Thatā€™s so inspiring to hear. The rockiness is killing me right now. Every time I stand up I feel like Iā€™m going to fall. Is this still an issue for any of you all?

Iā€™m BUSY AT WORK ( :slight_smile: ) right now Nick but just wanted to chime in and let you know that it is perfectly possible to live a mostly normal and healthy, happy life with MAV. Iā€™ve had a few relapses but always come good. And I work full time and even have a second job! (the mortgage wonā€™t pay itself). Hang in there and know that youā€™ll probably be completely fine with at most a few bumps in the road. I travel and live my life normally - go on boats, fly, eat pizza, drink red wine etc.

Vic

So good to hear, Victoria! So happy for you. Youā€™re an inspiration. Iā€™ve seen quite a few of your posts on these forums, and I noticed that you seemed to have been quite successful with Topamax, so Iā€™m glad to hear itā€™s still working for you. How long have you been on it?

Nick I didnā€™t have rocking (Kelly I think was the rocking queen and I think she found an antihistamine helped her, but Iā€™d have to check

I did however get a lot of false motion (the car would stop and I would feel like I was still moving or the ground was moving under my feet as I got out of the car even though I knew the car had stopped) but the meds killed that 99.9% of the time (I"m on metoprolol - a beta blocker.)

If Iā€™ve had a bad day or two and I can afford the antihistamine ā€œhangoverā€ I find a phenergan or periactin can ā€œresetā€ me if I take one at night. Unlike Vic (who is an antihistamine eating machine) I donā€™t need much of a dose to knock me out :lol:

Hi Nick,

We have all been in the pits of hell where you are now and have had our ups and downs. I guess I would consider myself at 90 to 95% most of the time if I am taking my medicine AND avoiding triggers as much as possible. As time has gone by I have discovered that during my worst times I am being triggered and donā€™t always realise it. I had been taking 10 mg of nadolol in the morning and 400 mg of magnesium glycinate at night and was ok most of the time with some breakthrough mild dizzies and nausea until a mold problem developed in my apartment. All hell broke loose and I doubled the nadolol and was still having problems. What I didnā€™t realise is that on top of the mold trigger, a lot of what I was eating had triggers for me. I knew MSG and tyramine are big ones for me. But there r things not on those food lists that trigger me as well. Like green beans and I had no clue till a year later and I was eating them every day! I have to pretty much stick w root veggies and leafy greens because overripe fruits and veggies(especially ones w seeds) for ex. zucchini will set me off. I never eat anything canned anymore. I also have to b very careful to use all unscented products for body, bath and cleaning, laundry etc. Nobody wears perfume in my house. We do not use any chemicals to clean the house and I try to stay away from any kinds of fumes as much as possible when out of the house. Yes I have a very boring diet and many people think I am nuts but itā€™s worth it. When I go out I have chamomile tea instead of coffee and ask for simpler versions of menu items in restaurants. Never eat anything w any kind of broth or seasoning mix. Restaurants donā€™t always know if premade broths and seasonings are really MSG free. They will read the container and tell you no but if ā€œspicesā€ or ā€œnatural flavorsā€ is listed its in there. I Pretty much only ask for olive oil, salt and pepper on grilled meat and some veggies w butter. And most restaurants are happy to do it. Just tell them u have a food allergy and they will comply. Keeping well hydrated is another biggie, eating at regular times and not getting too hungry and goin to bed and waking up at the same times every day no matter what is also big. Even with all that as it should be if I get a cold or go to the dentist or get really stressed I will get dizzies and nausea but not as bad as it has been in the past. The process of getting a dental implant ruined me for a good 8 months. So, I guess what I am suggesting is that you re-take inventory of your triggers and your diet and surroundings. You may have tons of triggers like I do and are still being triggered on a regular basis. Do you keep a migraine journal? It really helps to figure out what makes things worse for you. I write everything down: foods, weather, disturbed sleeping patterns, etc. anything out of my routine that happens. I still discover things I shouldnā€™t do or eat, etc. after 6 years of MAV because the triggers stack up and when u get over a certain level it goes off. So some days I think something is ok even tho itā€™s a trigger. Itā€™s also just not humanly possible to avoid everything all the time. And triggers can build up over days. It does suck to have to be so meticulous but it does yield results. I went from a couple of episodes of being stuck at home for months at a time, unable to walk without a cane or sometimes even w one, dizzy as all get out with headaches and slurred speech and ataxia so bad my leg would give out on me, head bobbing, vomiting, etc. I was able to go back to working a low key job part time and then full time. Life is not perfect but Iā€™m not giving up. Right now I am home from work bc my blood pressure is too low on nadolol twice a day (after 3 years of success) and I have to try taking half again and see where that gets me. I may have to add another med to get back up to being able to go back to work. Who knows maybe I was just not drinking enough water or eating enough in the Am to keep the bp up. I am suspecting an interaction from another medicine I was given plus that as my bp was low before I started the medicine. Keep trying man! There has to b a way around this for everyone. It just takes a lot of discipline and scientific method. It can b depressing but I just think of the things I can have and can do instead of focusing on what I canā€™t. Take it a step at a time and keep focused on your progress. We all hit the wall at times but just keepin at it even when frustrated will work eventually. Sometimes medicines stop working and we have to try new ones. The body chemistry changes over time. I have heard that some get lucky and as they get older their chemistry changes enough that they donā€™t get migraine very often or at all anymore. Iā€™m keepin my fingers crossed!

All the best!
Jeanette

I totally get itā€¦ Iā€™m 32 and going on my third year of vertigo, I have three kids and keeping up with life is so hardā€¦I try to push through but when your in the grocery store with three kids and the aisles seem to be moving faster than your eyes and pushing the cart makes you feel like you going across a rocky roadā€¦weā€™ll I canā€™t always fake normalā€¦I go to doctors this week and I will have my final dx but they have already told me my symptoms scream mavā€¦ I have been following the diet the best I can but Iā€™m only humanā€¦I will not touch anything with msg, I will be down for usually three days and still recouping the fourthā€¦so it was easter I watched everyone eat yummy food and I ate nothingā€¦then the next day I couldnā€™t help it I cheated had a few pieces of cheese and my fav picklesā€¦weā€™ll the next day I had a full blown brain freeze migraine I started losing vision in my left eyeā€¦and Iā€™m having an eng done so they said nooooo meds not even Advilā€¦so I suffered, I am really trying to be hopeful I have a life I want to live and I feel like Iā€™m fighting everyday for some normalcy, I wonā€™t give in but the days the vertigo is at itā€™s worst I immediately become depressed and think this is itā€¦this is my life and I will live forever trying to copeā€¦not being able to shop or go into public settingsā€¦it sucks and then on top of it I canā€™t eat anything I like! Nooo fresh baked bread (which I love to make) no bananas cheese pickles sour creamā€¦shall I go on? I think I feel even worse now because I had to go off my ativan a few days before the eng so Iā€™m in full detox but I already kicked the coffee habitā€¦what do I have left? We all have a crutch,a guilty pleasure,an addictionā€¦but who am I when there all gone and how do enjoy lifeā€¦anyways Iā€™m whining but what Iā€™m really curious is now that Iā€™ve started watching my diet my vertigo is so much less but now Iā€™m getting migraines almost everydayā€¦has anyone else had this?

ā€” Begin quote from ā€œsarahdā€

the people with the most severe symptoms are the ones who will hang out on a forum like this in general. honestly i was given a lot of false hope by my drs. and encouraged by all the success stories i saw on here and was made so much worse its terrifying. i wish i had been warned that i could get worse from treatment so that i could have at least weighed my options- no one warned me this was a possiblity. now i am 30 and looking into things like assisted living- if i had known i could have gotten worse i would probably have made different decisions. again i am an absolute worst case scenario super random case of this- my dr. has never seen someone get permanently worse like i did in his 20 yrs of practice. but again i am on a forum bc i am so bad off- the milder ones or the ones who get better arent on here, they are off living their lives hopefully.

ā€” End quote

Hello Sarah. What meds did you take which made you worse that you were when you started when you stopped them?

Did you say VRT also had the same overall negative effect when you stopped it?

Thank you for any info.

vestibular rehab, topamax, savella, and atenolol, in that order. They each made my balance progressively worse and now i can barely stand up or walk around the house or shower. i used to be able to walk safely unassisted and get out and basically function (not highly function by any means) but I could take care of myself. nope no one has any idea why i got worse but its too late anyway. i wouldnt worry about this happening to you my drs. have literallly never seen this before or read about it so the chance of it happening to you is extremely slim.

I felt so sad reading your post. I was in your position, I can relate. When I was diagnosed I had a three year old and eight year old. I was 33. I was bedridden, depressed, extremely anxious and so desperate. My husband works long hours. I would rely on my parents to help me with my kids, shopping, etc. A few meds and therapy made me worse. All my hope was gone. Life was going on all around me. I was so jealous of others. I could not accept this condition. I read every self-help book, healing book, religious book possible. Then my husband gets diagnosed with cancer at only 36, my daughter gets diagnosed with type 1 diabetes, my mother in law passed away, and that is not even the half of it. I was so mad that I had to deal with mav while sitting at my husbandā€™s hospital bed. I couldnā€™t even walk to the cafeteria to get myself a sandwich. To make a long story shortā€¦ Please, please, please do not lose hope. I consider myself a success story because I am 100% better than I was. Sure, I get my spells but I know it is not here to stay. And my spells are mild, thank God. I know stress is my trigger. Dr. Hain and Dr. Cherchi saved me. They really did. They talked to me and gave me hope. It is a long road but you can and will get better. You will. I still visit the forum because I like to see if any new advances have been made. Also, one of my best friends was diagnosed with mav. What are the chances? He goes to Mayo in Mn. for it. He was real bad but getting better. I am so sorry this happened to you at 24. I canā€™t even imagine. You are in my thoughts. I know everyone has their own beliefs but I am praying for you. For with God, nothing shall be impossible. In the middle of my suffering an insert that said that came in the mail to me with some organization wanting donations. I still have that card taped in my kitchen. I look at it everyday. Just to let you know, Hain does do phone consultations covered by most insurances. You just call, then fax or mail your records. Then he calls you. I was too sick to travel back then. You will be okay. Donā€™t give up.

All my thoughts and prayers-
Nance

Nick,
Just realized I was replying to post from 17th. Hope you are feeling better and hopeful. I am on iphone now at eye dr appt. i didnā€™t look at date till after I replied. I am having trouble seeing small print close up. Hope I donā€™t need glasses just yet.

Nance

Thanks for your reply, Nance. Good to hear youā€™ve gotten better and Iā€™m sorry to hear about all the obstacles that hit you while you were going through this. Sounds like you certainly had it worse than I do now. So you got better without any medications at all?

Also, is the struggling with reading small print a result of the MAV or just bad eyesight?

Hi Nick,

I take Verapamil. A very low dose. Dr. has me sprinkling 1/2 of capsule onto applesauce before bed. It is extended release capsule 120 mg, so I take roughly 60 mg. this has helped my cluster headaches tremendously. I suffered every spring for three months straight with debilitating headaches since I was 15. So I take verapamil for clusters and mav. Also, I take Vitamin B complex (vitamin B2) is in it, Vitamin D, Co Q10, and I have slacked and only sometimes take magnesium. All were recommended by my neuro. I take Wellbutrin as well. I was pretty anxious, not sleeping etc when I was dealing with my husbandā€™s illness and my symptoms. That helped me. I am so med sensitive but am good on these. I do have Diazepam if I need it. I donā€™t really take it anymore but carry it with me. The eye dr. said I can get a pair of magnifying glasses at Walmart to help. I guess it is common as we age to get blurry vision when reading things up close. Iā€™m going to be 40 in Dec. but I do remember my vision feeling funky when I had daily dizziness. But this is different. I pray my 40ā€™s are better than my 30ā€™s. lol. Just to let you know, I went out to dinner last night. For the longest time, I never thought Iā€™d be able to do that again. Now everytime I go out to dinner, shopping, etc. I always feel so grateful. Because at one time, I couldnā€™t do anything. You will get better and enjoy life again too. Try to keep stress levels down. That is the hardest for me. Easier said than done. Hope you are feeling better

Nance

Thatā€™s good to hear. So happy for you! How long did you struggle with the symptoms before you were finally diagnosed with MAV, and how long after your diagnosis did you start getting better?

Also, how many years have you been better (or at 95% or so most days)?

Also, Victoria - has the Topamax helped you with the rocking/swaying/loss of balance? Or was that ever a problem for you?

Nick,

Took 6 months for diagnosis. It was a gradual improvement. Med started working in about 2-3 months. I think I was then about 70-80%. Diazepam helped too. I just took it to get through dinners, shopping etc. at that point. Outside of my 2010 flareup, iā€™d say I have been 95%. Stress, fatigue, hunger, and seasonal weather changes trigger me but nothing big enough to keep me home anymore. I think my dr was right, it can just burn out so to speak. I was so mad for a long time at being 70-80 %. But it was a gradual improvement. I can accept 95%. But still aiming for 100%.

Nance