Help me.

Everytime I turn off the lights and close my eyes to go to bed, my symptoms become active but i remain calm and it passes within 20-40 mins and i fall asleep. Iā€™m so use to it i just enjoy the ride.

4 Likes

Iā€™m not anxious at all through the day. At all. Even when I wake up dizzy itā€™s a little but not as much as I get from a severe attack. I know it canā€™t kill me but I have seen dr after dr and they say eat properly walk avoid stress and only the last neurologist on the third visit recommended meds. So I tried it and was hell. Ppl say they wake up with dizziness but I cannot fall asleep from the intensity of motion when my eyes a closed its impossible to sleep itā€™s so uncomfortable. Itā€™s non stop throughout the night and kept going after the dream I awoke from dancing and spinning. It doesnā€™t let me sleep! I see ppl say you have to get control. Iā€™ve been in therapy for three years. Iā€™ve seen 5 specialists done vrt and still do. I have no clear answers as to why it returns or if this will be a problem Iā€™ll have to live with forever. Why do replaces happen? Iā€™m scared to live fly travel because the symptoms are so debilitating! Iā€™m crying as I write this with absolute gut wrenching pain that this has been plaguing me for 10 years and got worse 2015 and I still donā€™t know how to get better despite seeing so many specialists.

I would enjoy it if it let me sleep mine doesnā€™t the ride is vicious .

if you already seen that many drs, maybe itā€™s time to try meds?

1 Like

I had to try three meds over the course of a year before I got under control - not better, under control. And I still have bad days, bad weeks, relapses. I flew three weeks ago - in full aura. I lived. I managed to not even embarrass myself this time. You have to live your life.

Meds are hard at first. You have to ramp up much slower than the pharmaceutical company and your doctor recommends. Each ramp up increases symptoms for a few weeks before they ramp back down. Some side effects always stay but are worth it in the end. Each time a med fails you have to slowly ramp back down, hang out at baseline and try again. Each med should be tried to at least 4-6 weeks at an effective dose, if you can. A lot of us have tried the same med more than once and found that sticking through the early awful was worth it. Some of us did that and still rejected that particular med but not the whole class of meds. There are many different meds. Each works slightly differently. Mileage varies but there is almost always something that works to an extent or a combination of somethings. After that, you just accept what you have and live your life anyway. Many of us can get to 80+% and can call it good. My life is MAVtastic. Itā€™s full of MAV but also pretty fantastic. Some of that is meds and lifestyle. Some of it is acceptance. I work around it and forgive the bad days, cherish the good.

I went to the symphony on Saturday. Got all MAVy - dizzy, photo and phonophobia, unhappy tummy. I still enjoyed the music. Yesterday I woke up even more MAVy. It was kind of cold. Kind of rainy. I rode my bike 35 miles anyway. The entire way the ground was wavy, it was hard to see, my head was foggy and I had significant diarrhea. But, I know this trail. I know my capacities. I know where the bathrooms are. It was a beautiful ride and I enjoyed it. I feel just as crappy on the couch as I do out in the world. I might as well play.

Find a reason to be happy as you are and then work to get to a better spot.

3 Likes

I try but this unable to sleep no one seems to have, Iā€™m ok during the day but as soon as I close my eyes I cannot and it will not let me sleep. Iā€™m so sorry I know Iā€™m being a pain but I just want to sleep. I canā€™t accept feeling worse if meds will do it to me thatā€™s terrified me. I take the meds a yr they donā€™t help I come off them and still feel horrible then what?

Have you considered a sleep specialist? There are actually quite a few members here whoā€™ve had trouble with sleep. @turnitaround I know slept or sleeps on multiple pillows so his head was never flat. Otherwise, he couldnā€™t sleep.

Meds wonā€™t make you feel much worse than you do right now. Your life is pretty unmanageable right now. Whatā€™s a couple of weeks of feeling crappy compared to 10 more years of this? You already know exactly what you can expect without them. You donā€™t know how much better you might feel if you try it and stick to it, even if that means more than one trial. I thought topomax was going to kill me. Effexor saved my life. It was worth going through topomax (which some people love) to get to effexor.

Kill you? I donā€™t want to be dependant on meds. They just suppress I want to heal it forever! I was ok for two years. Nothing. Can it go away forever?

I donā€™t know. Iā€™ve had it for 20+ years. It doesnā€™t have to go away for me to be happy, productive, vibrant in my life. MAV is a chronic condition. Iā€™m certain mine is genetic. Unless we learn how to do DNA swaps, I donā€™t see changing out the essential me - a me that has MAV. Iā€™m ok with that. MAV isnā€™t a plague in my life. Itā€™s a feature of my life, among many others. Meds made my life better. Is it just suppression? I donā€™t know. Donā€™t care, either.

I was ok-ish for a long time, too. Itā€™s a pattern with us that often progresses until it goes chronic. Mine did that in September 2017. It was inevitable for me, looking back. I gave up trying for a 100% forever cure. Thatā€™s not really a condition of life. Instead, I live my life, with MAV and am really happy its not something much worse. And because of MAV, Iā€™ve learned lessons about myself - in strength through vulnerability, empathy, kindness, acceptance and love that I would not otherwise have known. Iā€™m a better person for MAV. This is not a catastrophe, though sometimes it seems it. Itā€™s a blessing, too.

4 Likes

Wow you are something special. I want to be like you. Ok so if my mri in 2015 was clear I shouldnā€™t worry do I need another. For nights I donā€™t sleep from chronic dizzy what can I do to feel better. Walkā€¦ foodā€¦ ? I donā€™t know ā€¦ I M fear flying travelling because of this. I want to learn how to better cope as sometimes I say this canā€™t be vm you know?

1 Like

See, thatā€™s the best bit. You ARE just like me. We both have MAV. We both have one clear area of control - our attitudes. We both suffer, but we donā€™t have to be miserable. And you and I arenā€™t alone. There are thousands of us right here at mvertigo who totally get it. We understand. We all despair. We all get mad. We all have to grieve. Some of us are very lucky to get to acceptance or at least f*ck it, Iā€™m going out to play.

Nope, you probably donā€™t need another MRI. My first and second MRI showed the same thing - nothing. When I canā€™t sleep, I walk. I used to go swim really early at the YMCA in my town. That helped because water doesnā€™t care if you canā€™t walk straight. Sometimes I do some menial task like cleaning. Try sleeping upright for a while. That might help. I also have a considerably better relationship with God than I used to. Turns out, heā€™s available 24/7.

Travel. Live your life. Whatā€™s the worst that can happen? Howā€™s this? Explosive diarrhea on a plane. Been there, done that. Drugged into a coma and need help getting on/off the plane. Yep, tried that, too. Feeling lousy when you get there? Arenā€™t you already? Play anyway. Just be mindful of your limits. Plan in rest periods. Understand travel is a trigger so hydrate, keep travel days light loaded, eat well.

Itā€™s MAV. Itā€™s all MAV/VM. Migraine is a brain trauma. It affects the central nervous system including all sorts of autonomic functions. Your brain determines your reality by interpreting information from your senses. Ours took a detour and is showing us some pretty exotic lands - in our own backyards.

3 Likes

So today last night not a wink and I tried to sleep again Nd within five min same feeling. Si is it just a matter of when my body allows me Iā€™ll sleep. Ps. Since you said autonomic would it explain if you have heavy stress mav shows up weeks later? Irregular heartbeats and when mav goes so do symptoms?

At this point, Iā€™ve had about 98% of the symptoms I hear about on here and read about in the scientific literature including the irregular heartbeats. I donā€™t put much past MAV. Stress is a major trigger.

Hey, I hate to leave you, but I have to. Iā€™m a planning consultant in Washington state. In a pique fit of public do-good-ery I set up a regional forum between six local cities and the county. Our kick off meeting is tonight and Iā€™m the moderator. I have to go live my life.

Iā€™ll pray you get some sleep. :heart:

2 Likes

Same here. I think of it like a cradle rocking me :stuck_out_tongue:

5 Likes

Guys, hats off, thatā€™s the spirit!! :fist_right:

@An4749 this is how you need to look at it mentally. These symptoms arenā€™t going to kill you, they are just unexpected sensations, try to change your attitude towards them.

If you are struggling mentally you really should consider counselling or medication, but always take the advice from qualified doctors on this.

In any case you should experiment with diet and supplements to see how far you can improve things without medication.

Have you tried the 6Cā€™s diet? Have you cut out caffeine and alcohol?

1 Like

Guy i love the outlook trust me but if it stopped and let me sleep great but it doesnt. Everytime i close my eyes im dizzy like extremely drunk or get awoken from dreaming im dizzy. I tried meds yest and no beouno! What type of supplements? Diet i feel i eat well but made the mistake of eating mcdonald. 2017 i ate whatever I wanted and was fine and now im back here no sleep for 5 days.

Ane, the answers are on the site already, please read the material provided via the wiki like I asked you to.

https://www.mvertigo.org/t/poll-what-supplements-have-helped-you/14929

https://www.mvertigo.org/t/diet/14992

OK. Lets get down to the nitty gritty. Can you remember (a) what meds you took? (B). How big a dose? And (c) for how long?

And, are you prepared to follow a Migraine Diet strictly for a few months, and stop or severely reduce caffeine ditto?

Are you prepared to seek treatment for your Health Anxiety?

All questions you need to ask yourself.

Because IMHO Nothing is going to change until YOU implement changes. Helen

7 Likes

In addition to what James posted above, Dr. Hain has some information about supplements. Click on the titles to be redirected to the pages:

ā€“MIGRAINE HEADACHE ā€“ Alternative treatments and Conventional Medications of uncertain utility

ā€“Migraine and Magnesium

3 Likes

lying down is my worst position especially if I lean to the left side where I have the vestibular issue.
As per James ā€œTurnitaroundā€ - I recommend learning to sleep in a slight recline. He uses pillows, I bought a cheap adjustable bed so I can set the incline. I sleep on my back with pillows formed so I donā€™t turn hard to my side - especially the left side. If I end up somehow moving in my sleep and lying flat or on my left side I often awake with the start of an attack and need to quickly take meds and drink water staying upright for a while to recover.

One side benefit is that it also helps with gastric reflex if you have that issue (I did and now can skip the drugs for that).

I tried many drugs (most anyone mentions here) but none of them had any positive affect for me. I am also predisposed to be skeptical of anything that they claim takes 6 months to start to work. I can see how that might be the case if there is some real scientific explanation, but frankly my condition varies significantly whether on drugs or not so I might just get better in 6 months. I do know that there are many on this form that found a drug or combination of drugs that seemed to help them dramatically and I certainly approached it with that in mind giving them long periods of trials, but none worked for me.

I do use a diuretic Triamterene/hctz which significantly reduced the number of spinning/drop attacks where I canā€™t stand. However I changed over from periodic attacks to a constant condition of imbalance dizziness/vertigo, and migraines - and thus the MAV diagnoses in addition to Meniereā€™s. These are just names for groups of symptoms anyway and not a definition of exactly what is wrong.

Although I am somewhat of a skeptic on the migraine diet (I donā€™t think it is the cause, but just a possible irritant that exacerbates your condition. However I do keep my salt intake low and consistent (like the diuretic it seems to help with the fluid level and pressure within my vestibular system which seems to help). I also try to minimize certain things that I have found may worsen my condition. I have one coffee a day and no more caffeine. I try to avoid chocolate and peanut butter but not really convinced if these are an issue.

I do use some ā€œrescue drugsā€ which I religiously carry 100% of the time (in a contact lens case). These are to help fend off an attack before it becomes a major attack (last major one put me in the hospital for 3 days after 12 hours of vomiting and stuck to the floor).

Valium for me is the best emergency drug and has a very fast affect to reduce the vertigo. I also carry Zofran that disolves under my tounge to help stop the vomiting so the valium will work. I try not to rely on these all the time, but if I have that feeling as if an attack is coming, it is the best thing to avoid it. I also find that sitting quietly in the dark and drinking lots of water helps to make these go away.

To sleep at night when I am not doing well, I use a low dose of Promethazine before bed (which helps reduce dizziness/nausea and makes you sleepy). I also find that a low dose of benadryl helps me to sleep as well if I donā€™t want to do the promethazine too often . Getting a full night sleep is a key for me to have a decent day. No sleep equals bad symptoms all day.

Just my 2 cents on ideas to help you cope and sleep.

Dave

2 Likes