Guys im back and again i cannot sleep its 3am as im sitting upright sweating and afraid. I dont feel dizzy but i cant sleeep because when i close my eyes its like im about to spin and my body naturally is anxious. I was out loud music and ears statted to hurt. Head movements are sensitive as i sit up in bed scared and brain wont let me drift off comfortably because when i do i feel as im floating dizzy oh i hate not being able to explain but is meds my only way out of this?? I see pppl on meds and still get attacks and for me it never lets me sleep the fear the body naturally produces. Im not coping im really not everyone.
Ane, please… I’m not being harsh, that’s not my goal. I want you to hear me.
We have all chimed in before and you don’t seem to listen.
You’ve tried the diets, you’ve tried the lifestyle changes, you’ve been to countless doctors, you’ve done everything in your power… but you won’t take medication.
We’ve all been scared, we’ve all had sleep stolen from us, we’ve all lain awake for days on end praying, hoping and too scared to close our eyes. We cannot help you if your not willing to help yourself.
Please… for yourself and your family… PLEASE speak to your doctor about medication options! You always say you cant handle another day, but you do. Another day comes… and it’s still bad. Unless you try something different than you already have, this cycle won’t ever end. YOU must make the decision to change your tomorrow or week or month or year by taking steps today.
Echo that! @Naejohn
Ok sorry. I wont post again. I dont do meds as i fear feeling worse than i do and ppl do according to the forum.
Obviously MAV is terrible, I just really struggle to understand people not taking meds? I mean for me personally I think if your not willing to try meds then it can’t be that life restricting because I was scared, terrified of dizziness getting worse to the point where I would rather not be here anymore if this is my new life. That is how bad it was.
We all appreciate that you are suffering but surely the choice between winning and loosing is better than not knowing?!! If you continue to struggle then - without sounding harsh more fool you. Perhaps the first drug you try would be the one for you? How will you know either way?
I have tried 4 different meds now and its not for the faint hearted but I literally have NO CHOICE!!
Its really quite simple, I wish you well and hope you take notice of this and at @Naejohn because nobody knows better than us MAVers what it really is like.
I feel like shit amd feel.likenim annoying everyone when i shouldnt feel like that. Everyone thinks im stupid for not taking meds. I dont want to feel worse its my biggest fear and my body is so sensitive i cant evem do magnesium.
And it is life restricting. I barely leave my room. I wemt oir fornthe 1st time full of panic and dread and last an hr. Thats 3 yrs of agoraphobia. Im fightong every day
Absolutely not the aim here. We want you to feel better. Of course you need help. Only you can make this happen.
I wish you well with whatever options you decide.
Ane, no one thinks your stupid… my gosh, we all live and have lived in the exact same space your in… absolutely NO ONE here thinks your stupid! I don’t want you to quit posting, this isn’t my forum and I may be kicked off here tomorrow… but before I do, I need to try and HELP YOU! I am here for support and compassion that others have given to me and I’m here to help others. I want you to HEAR ME… I’ve been compassionate and encouraging to every single person here and your no exception, I was compassionate and supportive on Instagram when you messaged me too.
I am a survivor or this horrible disorder! I have CHOSEN to lot let MAV steal my days any longer… I made the CHOICE to take the risk with medication. Tell me how your days could possibly be any worse if you simply try medication?! I feel like an angry mother right now, I just want you to help yourself… please consider!
Ane what is your doctor advising you to do? I think you could do with some professional counseling support from someone who understands what you are going through. Please discuss this aspect and your fear of medication with your doctor.
You have to recognise there are no magical solutions. It’s important you try to follow the advice and at least try all the options. You have the power to make a difference. It might be a bit of a leap but I’m sure you can do it!
We’ve all been there with at least some fear of the unknown but what other options so you have left? Given how disruptive and harsh MAV can be, fear should not be enough to stop you. Be brave for your own sake so you can get you life back!
I can understand. I’m extremely sensative to meds and have taking over 6 months to reach my dose on pizatofin. I have quartered tablets and quartered agen. Low and slow on medication. You can do it. You can make the tablet as small as you like. Your in control. If you find it’s toi much than stop. You will not know until you try. I understand the anxiety, but try, please try.
Thankyou i feel just like you. Ppl say heart palps ive had those and fear getting irregular rythym again or feeling an attack or a worse one. I just fear more symptoms. Did you get dizzy in sleep feeling hungover attacks. Is the medicine helping . Do u still get vertigo.
I hear you i do but the fear of feeling worse from what others have said scares me. I dont want to feel dizzier or get more violent attacks i fear that. I want my life back but ppl say otherwise. How long do i get my life back being on meds. Of i come off them will it return. I dont know how this all works even after 10 yrs. Im sorry i am listening im scared alone and fear attacks. Last night it would let me sleep i want dizzy but felt drunk i close my eyes i cant sleep . Ot i wake up to intense swim headed which ive had 3 times. Lasted hours. Now i have a fear of sleeping.
You might feel better too. I understand about being afraid. My neurologist said to me, “we’re just trying things. If it doesn’t agree with you, then I won’t make you keep taking it.” I think most doctors are working in that way, with the goal of getting some relief for you. Don’t leave - this place is where people actually do understand what you’re experiencing. You might not agree with all of the comments, but these are people who have been in your shoes. Whatever is said here gives us something to think about and maybe a pathway to start trying new things in spite of the fears.
Having MAV can be a really negative situation but that doesn’t mean we have to only focus on the negative. You mention you fear trying the meds because of the negative things people have said - but you are choosing to ignore all of the positive things they have said. So many people have improved or recovered with meds. Think of the possible (more likely probable) outcome of improving with meds, and not on the negative of side effects, which you may not even get. We are all here for you and understand your anxiety. In desperate times sometimes a leap of faith is needed. It could make all the difference. And if you do nothing, you already know how you will feel, which seems to be causing you a lot of discomfort as it is. Are you under the care of a doctor for Mav?
Thankyou so much for the support. I have been to see so many drs. Test. Mris. But i dont even understand vm. I was so good in 2017 but aside from the fee attacks ive had it mostly plagues me in my sleep. Not even as severe as an attack but still bad. When ypu say fully recovered i dont understand as ppl say it can return and then go back on meds? Im 37 and have been suffering for 10 yrs as it comes on and off but the attacks started 2015 and come and go. I dont know what to do anymore. No amount of cou selling ive tried tskes away the fear of the sensation. I dont want to keep trying meds as ive always been sensitive to any medication. I sound annoying i know i just cant express how i feel
You aren’t annoying you are just desperate for relief. Everyone deserves to feel better. The fact the you are using the forum and asking for advice tells me deep down you are still willing to try something. Which meds have you already tried? There are so many out there it would be nearly impossible to try them all. A lot of them are easier to tolerate than others if you’re worried about side effects. Have a professional monitor you closely and begin with very small amounts. It certainly is worth a shot considering how much you’ve been suffering these past years, no? As for the recovery, I can tell you I used to get VM as a teenager and after several months of meds it completely went away for me and ceased to be a part of my life. Only since I’ve been off meds for several years and had a stressful period has it come back. So that is always a possibility but I can tell you being on a med that works for you is 100x better than dealing with untreated symptoms. Don’t feel anxious about possibly being on a med long term. Millions of people with all sorts of medical conditions take meds daily to treat whatever they have, and go on to live normal lives!
ThAnkyou for really listening to me and all the ppl who reply. I think what if I try meds and then I get vertigo so bad like I’ve never had before prior to meds and makes me so bad and my anxiety gets so bad I become agoraphobic again because I fear the symptom of vertigo so much. It consumes me. I was given this a month ago "Thanks for your emailI am sorry to hear I think these episodes at night that you are describing are due to vestibular migraine. I really feel that you should consider trying another medication given the severity and the impact these episodes are having on you. As we discussed at length last time, migraine medication works differently in different people and you often just have to try one and find one that works for you.
He first prescribed me allegron if no good try these
My suggestions are:
-Sandomigran. Possible side effects are drowsiness and weight gain.
-Periactin. Possible side effects similar to Sandomigran, but you can take this medication on and off. I’m freaking out as I don’t want to aggravate my symptoms anymore ugh I feel so scared but my anxiety is panic disorder when I have an attack I hate it so much.
Also after taking meds for a few month how long were you ok for? Wow … we’re u scared ThAnkyou for listening to me I just wish you could see that state of fear this has a hold over ,e and the problems it caused me heart irregularities and then even more anxiety all from vertigo !
Try xanax or klonopin or ativan.