I’ve hit a new low, i can’t be out of my bed for more than 1-2 hours now, she visual shakiness, the out of body feeling and the violent rocking sensation are out of control …I don’t know how to be strong anymore, I try really hard just so my 2 daughters don’t worry but I just can’t keep up with the strong face anymore, yesterday I cried all day while the little one hugged me.
Little by little the things that I was still able to do are disappearing, like driving …I’m scared of not being able to do the things I’m supposed to do like taking care of my daughters, taking them to their appts (one of them sees a therapist once a week), to their extracurricular activities, my husband already has so much on his plate being the only one that works and we don’t have any family or friends around.
I hate this new life, I’m angry that God chose me to have this illness, there are dark thoughts in my mind and although I wouldn’t dare to do anything stupid because of my girls I do feel I would be better off not being in this world dealing with this stupid condition
Sorry about another venting, nagging post …I just don’t know who else to turn to
I am so sorry you’re struggling so much at the moment. I think we have all felt exactly the same. I know at xmas I hit another bad patch and felt alot like yourself, MAV has ups and downs and we are lucky enough to be amongst friends on here that understand.
Have you started any meds? I can say that my mental health felt more stable when I started Amitriptyline and my symptoms gradually got less… dont get me wrong I am by no means Cured or a success story but I am definitely doing much better. There is hope! Please dont forget that… this is just another bad patch and you will get better. Those words from fellow MAVers helped me through the dark days! They were right!
I guess in life we have to accept the path we have been given whether we like it or not. I always think OK I am living this hell but there are people far worse off than me and I can get through this and I do everything in my power to keep going. Some days its easy to fall back into the MAV pit but just know this is temporary and things will improve. I have hope for you!
If you ever need to talk just PM me… I am always kicking about this site reading and educating myself on ways I can get better
You have been blessed to have 2 lovely children and they are what will push you through the rocky days!
Hope it improves for you soon lovely
Thank you @MNEK18 …I started nortriptyline but only lasted a week because I felt it was making my symptoms worse, but who knows & it was just a bad flare up, I’m now on week 4 of zonegran since I did good on topamax when my migraine pain started 5 years ago but stopped it because extreme weight and hair loss so my dr thought zonegran was a good choice. He said Effexor would be my next option if zonegran failed, I’ll see him at the end of July for a follow up
I’m so sorry your struggling. All I can say is that numerous times I have been where you are right now, actually even now I’m feeling real crap about my life. I feel vm gives us abit of hope and we drive, live r daily lives and them wham we’re back to square one and we’re having to get used to walking again and push through the rockyness. All I can say is, you will get back to baseline and you will get through this. Vent all you like, you have every right too, as this illness is unpredictable, unstable and just unnatural. This too shall pass.
It is a positive that there is a plan for other drugs in the pipeline should Nortriptyline not be the one for you. Would you be willing to try the Nort again and see if you can push through the first few weeks? It could certainly be that your symptoms are just peaking and the nort hadn’t even been in your system long enough to make a difference. I started to see positive on Amitriptyline at 30mg once I pushed through the side effects. It was worth it.
Obviously you want to feel better and asap! Perhaps you could contact his secretary and get some advice whilst your waiting for you app?
@MNEK18 I was actually thinking about giving it a second try. What I felt that time is very similar to how I’m feeling now anyway!
My 5 year old has surgery on Monday, i don’t feel too stressed about it but maybe subconsciously I am and that’s what brought the bad flare up
@anon96534049 I know you understand because yesterday I read a very old post of yours and I cried while reading it. You typed the exact way I’m feeling right now on that post
Almost everyone finds the drugs make it worse before it gets better. A real trial takes minimum 4-8 weeks at each dose. Trial the meds. You’re still very early on. In a year, this will be a bad memory.
Very possible Diana! I agree, I think giving it your best shot is a sensible idea there is not an endless amount of MAV drugs out there to be so picky I guess. The dose would be very small 10mg? To begin anyway so unlikely to cause big flare but not impossible I guess.
I know how hard it is. Especially being a mother on top of this. Rant any time you need too with me x
@Diana21, we are here for you!
We all know the pain, the anxiety and the overwhelming fear… this is the place where you can get support that no one else can offer, not because they don’t want to… but because they can’t possibly understand.
Please hang in there and know that help is out there, you just haven’t found the right medication yet. As @MNEK18 mentioned, there are so many options for treatment and we just have to keep fighting for it.
You may want to try the Nort again, you know going in that it may be a rough few weeks… but your having rough weeks now with nothing to lose and potentially much to gain! I have read good things about Effexor as well.
I wish I could give you a hug Please know that the future is not lost, I and millions of others are proof of that.
I’m sorry you are suffering, I understand what a horrible nightmare this is. I began to improve after about 3 months on 30mg of Ami, at first I felt so bad that I was willing to try anything and I’m glad I finally saw a neurologist and got diagnosed. I think without the meds I would still be really suffering. Try to give them a really good go, they take a while to work. At first they flared me up a bit but it passed fairly quickly.
Oh Diana, I am so sorry you are going through a low point. We all go through them. It’s okay to just accept your feelings for a while (it’s natural to be angry and to go through all of the stages of grieving VM sufferers go through when we’re having a particularly bad, long stretch). I’m writing this response from my bed on a beautiful Sunday morning while my husband and son go off to visit an island off the coast for the day. I’m feeling so sorry to have missed the trip (yet again) and while I know I should focus on the progress I’ve made and the small victories and stay optimistic, etc… sometimes you have to just accept that you’re sad and share the burden. That’s what we’re here for.
Thank you all for your sweet words
I know this is a long process and that it takes time for meds and all that but it’s
Hard for my mind and soul to be at peace with that when I’m feeling so bad. Today is definitely worse than yesterday, I’m supposed to be making my daughter’s day a good one since she’s having surgery tomorrow and all I can do is be in bed, I don’t even know how I’m going to be able to wait at the surgery facility tomorrow for hours.
I feel like such a failure, I try to tell myself that I didn’t have any control about getting sick but still. It’s like I have two voices in my head battling each other …yesterday I realized that I’ve become a resentful person towards those happy and healthy and I don’t want to be that kind of person, I don’t want to be mad about others’ happiness, that’s not the person I am.
Oh, I remember the resentful feeling well. I remember one Remembrance Day (11th November) when it was dull flat and barely light, might even have been drizzling being the darkest month of the year in UK always and I remember peeping out through the curtain for a second which was as much light as I could bear being extremely light sensitive for about 18 months and I remember resenting the fact that people parking opposite to attend the Remembrrance Parade could actually walk about outside in daylight which was something I couldn’t for about 18 months or more. And I cried, and it takes something to make me cry ever. Today, in brilliant July sunshine I walked outside to peg something on a washing line and I didn’t even put on my wide brimmed hat. Didn’t need it. OK if I’d been staying more than a few minutes maybe. Which goes to show. The meds work but you need to stick with them for weeks/months not days(mine took months, many many months) and you need to put all those ‘Why me’s’ and ‘What if’s’ aside. You are doing yourself no favours. You are where you are so fight to get out of it, and just keep fighting. All the way. It is The Only Way. You gotta get tough. The resentment, like the symptoms, will pass. Helen
Does anybody feel better when focusing on things that requires your whole attention? Like art or things like that?
I’m good at makeup, my little girl loves when I do hers, today she’s anxious and nervous about surgery tomorrow and asked me to doll her up like we usually do when she’s anxious. I tried my hardest and got up, to my surprised I feel better (not completely ok) while doing her makeup and as soon as I finished the violent swaying came back. My mom who’s here from out of state to help with little one’s after surgery care suggested that maybe when I focus on something like that I block out the rest of my surroundings/triggers and that maybe painting or coloring could help.
If distraction makes you feel that much better that would seem to indicate a strong psychological element to me. I’ve read medical papers where they say it’s diagnostic of PPPD which does tend to be treated with somewhat different drugs than MAV. Helen
Helen I’ve actually contemplated the idea of it being something else like pppd or maybe a mix of both, but for what I’ve read symptoms tend to better or go away when sitting or laying down and increase when moving or walking. In my case I feel it most when I’m sitting/laying down.
It’ll be worth mentioning to the neurotologist when I see him at the end of the month
Hi Diana, I definitely look for things to keep me focused. That’s one reason my job has been so helpful to me during this time. I actually thrive on the demands, but also know when I will pay for it later. I tried the adult coloring books but my vision and photophobia didn’t play well with the patterns in the books.
My husband calls me a “jumping bean” since I don’t sit still often. For me, the more physical challenges of housework, even when it doesn’t “need” to be done, I do it. I actually feel better when I’m on my feet.
I think everyone is different and your outlet could very well be doing makeup!
If we lived closer to each other… I’d have you do my makeup and in exchange I would mop your floors