Long story short, I started meds for the first time last June. Was doing pretty good, not amazing. Then earlier this month I came off all meds due to side affects. Was doing well for two weeks and then all of a sudden not doing good. (Think it has to do with hormones.) now, Iām trying 5htp to boost serotonin, and taking 10 mg Ami to see if I can feel better while I look into holistic health. Iām just so fed up. My head just keeps rocking back and forth today and itās driving me crazy. This is so depressing being back in this place and I honestly donāt have the patience to wait!!! I canāt do it!
@flutters and I appreciate the support so much! But I think we all deserve to get better and feel better. My biggest worry is that I canāt just take something to feel better instantly. Has anything helped you? Do you have any advice? I sound so desperate but thatās because I am.
There is no easy cure. Many days suck. Some days suck less. What has helped me? These things:
Going beyond what I think I can do, even if I puke or have to sit on the floor for a while. Every day I can do a little more with less consequence, except on the days thatās not true. On average, gently pushing myself beyond my comfort zone means I can do more. For me, that means gut it out for 20 minutes at the treadmill or walking or in front of a screen. Most days, I can go farther. Some days, thatās all Iāve got. Some days, I canāt do anything. Thatās ok, tomorrow I try again. I accept that I might be tired more than I like for longer than is really reasonable.
Eat right. For me, thatās a strict ketogenic diet. I accept that my brain chemistry is not normal and I treat food like fuel, not comfort. I pay attention to nutrition. Iāve learned to enjoy simple foods, prepared fresh because they make me feel better.
Pay attention to electrolytes and hydration. Our brains are wired differently. They require more brain fuel. Thatās electrolytes dissolved in water - but without sugar or sugar substitutes.
Educate yourself. Know as much as your doctor. Knowledge is power and can help stop anxiety.
Advocate for yourself. You know you best. You arenāt an algorithm or formula. Know what you need for you and ask for it.
Be Patient. MAV is incurable at this point. Itās probably hard wired and genetic, though some folks find relief to whatever degree they can. Thatās not a curse or a death sentence. Itās just what it is. We have special challenges and we work with what we have. Give yourself credit for getting through the day with grace and humor and forgive the shit days. Be willing to try meds to see what works and what doesnāt. Sometimes you feel worse before you get better. It wonāt kill you. It might suck. Be patient, but set boundaries for when youāve had enough of something that isnāt working or isnāt worth the side effects. There is no instant answer, only trial and error, hope, perseverance and faith. If you need a therapist to talk you down from the ledge, get one. There are services, even for those that cannot leave the house. If money is an object, churches can provide love and support often over the phone - without necessarily requiring you buy the ticket. Though, if you have faith, it can be a huge help. It has been for me. I figure God doesnāt give these challenges to the rookies. He must have faith in me, so I guess I can, too.
Cultivate acceptance. Come to love you as you and work with what youāve been given. We can thrive, though our definition of thrive may be different than others. Our race is not their race, we have our own obstacles and definitions of success. Give yourself credit.
Strive for love. No amount of dizzy can take away the love of your heart. You have a good man. Love him. Be grateful for him and your time with him. Even in an iron lung, you can fly.
Take the long view. Itās not fast, but itās manageable if you look to improve what you can and keep on striving to do just that. There are no promises. Life isnāt fair. Look for the beauty in it anyway.
@flutters
Thank you for your word Emily. Have you tried medication at all? Or have you looked into functional medicine? That is something I really believe in right now. They test to see whatās going on in your body and work from there. Itās similar to how you are watching your nutrition.
I also have PCOS and a slew of other related maladies. Iāve done the rounds with functional medicine and naturopathy over the last 25 years. So far, most of my success comes from my own actions and listening carefully to my own body.
Iām trialing ami right now. At 10 mg. Iām having mixed results. Going to give it a few weeks to see what I think. Dumped Topomax forever, I hope.
My diet gets me headache free. Iām hoping VRT and ami get me more stable in the vestibular sense. Iām not as bad off as others, which my VRT attributes directly to how active I stay. I know that if I give up ground, it will be very hard to reclaim it.
Did you think the functional medicine roped at all? Sorry I am asking so many questions. I think it is great that you are staying so active. I think that is really important.
Depends whatās causing your āMAVā or if itās SEH thatās been misdiagnosed? (easy to do, it presents identically?). Iām not the only one on here whoās been diagnosed with MAV by more that one doctor but appear to be significantly improving (and continue to do so now even without medication). Another recent post showed that one lady was suffering from otitis media and once that was treated she started to improve ā¦ her symptoms were all MAV-like.
And in general people seem to get things stabilised and disappear from this site? Suggesting theyāve got things managed?
Also @GetBetter can list a number of people who are 100% with MAV controlled on meds.
I really do think MAV is an issue of chemistry and metabolism. Iāve had MAV symptoms since the 1990s. Itās baked in to my genetics. I think for a person like me, itās about a long term management strategy. I believe I can get to a much better place, but I donāt believe Iāll ever not be me - a person with multiple related genetic issues who must act accordingly.
thatās very possible ā¦ iām more specific about my theory, I think itās something to do with āhomeostasisā.
But homeostasis can get upset from various things, including injury, surgery, disease, infection ā¦ as well as maybe some genetic pre-disposition for instability ā¦
Essentially, itās āthe balance within an organismā.
There are so many interacting processes within the body and control mechanisms to keep them in balance. I imagine itās almost unfathomably complex.
I know for sure that my āMAVā is directly related to my injury. My injury upset the homeostasis of not only my inner ear, but the processes around it that maintain its integrity. I even developed symptoms in my good ear (thankfully these have passed now). It will be very interesting if my body finds a way back to full balance again, but it clearly takes a looooooong time.
Iāve been practicing mindfulness and acceptance. My focus, when Iām in a good headspace, is to come from a place of strength. I pay attention not to what I perceive as lost but instead to what I have been given. This community, for example, is a gift to me, as is the grace and humility to ask for help and demonstrate vulnerability.
Can I be honest here? I donāt mean to be rude or mean at all. I think this advice is definitely helpful. However, I canāt just sit back and accept that Iām going to feel like this all the time. I just canāt. I donāt think Iāll ever be 100% but I think that I can get much better and move past this to an extent. So this advice freaks me out a little bit because I donāt want to accept that Iām different, you know? Like I said, not trying to be mean at all, Iām just freaked out and depressed.
Camille, I get you and I didnāt accept it, and I got better ā¦ much MUCH better! So there is hope you will improve ā¦ but it takes a LOT of patience.