This video is about my personal story made to give those who suffer from Vesibular Neuritis, Vestibular Migraine, Labyrinthitis, MDDS, and PPPD hope. There is hope with these illnesses.
I have vestibular neuritis, I'm 4 months in and it's been rough. The KEY to recovery is to keep moving. You will get better slowly but you can't lay down and be lazy thinking it will go away. You need to workout and exercise no matter how bad you feel. It helps a lot, trust me. I'm at 80% I'd say recovered. Don't drink alcohol for atleast 30 days. Going for 20 minute walks doesn't work, you need to stay active for most of the day everyday
20 years. 20 years. And I'm 23 years old. Got this condition for as long as I can remember: done so many medical tests, checks, not a single diagnosis was given. Everything seems to be in the correct place but I always feel like I'm in a boat or in drugs. Experienced so many brutal attacks during these years: felt many times so dizzy that I had to ask my parents to hold my head while I was lying down on bed with eyes closed. This was the only thing that helped a little. This attacks returned in the last few days but I started to do some oculomotor and vestibular exercise found in the internet. It may seems weird but in these occasions, if I stare at my thumb, I do have some relief and eyes seem to be back on track. You feel like you're on your own 'cause current medical standards are not designed to help you with your condition. So yeah, guess I'm forced to re-train my balance/vestibular system on my own. Hope this could give me back my life, even if a little part of it. A hug and a big wish of good luck to all who suffers from this condition.
Thank you for sharing your story with everyone. I hope and pray that you see improvement in your symptoms. Hang in there! I’m moved by what you’ve been through.
I admire your tenacity to find out what you have, what helps, and your mindset to get through it. My son has vestibular migraine and vestibular neuritis. Currently he is in a really bad state. I'm cooking every thing from scratch, he's on vitamin supplements, it's just his medication which our GP has messed up and has caused an enormous relapse. Its exhausting continually bolstering him up, encouraging him. We're Christians too and like yourself, this condition has drawn my son so close to the Lord, he depends on him in a new way 🙏 God bless you
Omg! You brought tears to my eyes. I'm 25 and have had this for months. I want to die! It's too much. Has he recovered? Please let me know It give me hope. I'm Christian too. And just like your son it has brought me closer to god. Please pray for me ma'am and I will pray for your family. I don't want to live like this. Its not right.
I was diagnosed on July 2021.. I waited eight long months for answers ..many test and a lot of Anxiety..I thought I was alone till I found individuals online with the same condition and experience. Thank you so much iv been able to except and learn how to live with it..but thanks to prayer in Jesus Name iv been seeing a huge difference in my recovery yes God is good I see and feel my self getting much better through prayer and good Doctors..I'm pray for everyone going through this that God will heal you as well.
Great video!! I’m struggling it with myself and got diagnosed with vestibular migraine.. ACCUPUNTURE comes along way! I promise you. You’ll still feel that rocking feeling but it does go away with time especially with going to vestibular rehabilitation! Best of luck to anyone struggling. Keep the faith, it will get better🫂✝️
THANK YOU!!!! I am suffering from neuritis right now too and I get so upset whenever I go on any forums and people say they’ve had it forever and it never gets better and it makes me so upset but hearing your story has gave me comfort. Thank you so much.
Avery so glad my story has been a help! I feel basically 100% at this point! Meds and VRT have given me my life back. I’m playing sports again and feeling pretty much at least 99% most of the time with the exception of when I first wake up. Still getting better though.
Thank you so much! Would be too hard to express in words how this video has helped me have some faith in my future while dealing with PPPD. I’m so glad when I went to RU-vid searching videos on this disorder that I came across yours very first. 👏🏽
@@ericfixler I was starting to improve but a week ago I relapsed and now battling with it again, it's awful, worst thing I've ever had to cope with, I am doing VRT every day.
Wendy Lawrence hang in there it gets better! Just takes a long time. I was doing well then had a cold and relapsed a few weeks. I’m just starting to feel better. I do VRT everyday.
Thank you so much for sharing your experience! Exactly my symptoms, and my thoughts about them too--scariest thing I've ever been through. I woke up one morning 2.5 years ago with these symptoms and have had no break from it. I've seen an ENT and numerous other specialists, done more rounds of PT than I can count (including at one dizziness specialty place the ENT recommended, which accomplished zero)--NOTHING has helped. And nothing I've ever been through has changed my life as much as this has--I just retired 2 years ago and let's just say this has totally messed up nearly all the plans I had made. :-(
Somehow I ran across this pppd after looking for ever about my vertigo finally I have a name to something that I have nobody would listen nobody would understand it is debilitating sometimes I am just so thrilled that somebody else has this and I'm not crazy
Great message. I have dealt with this as well. It has now been a year and I'm basically back to normal. I did make the decision to start Lexapro a few months into it and that seems to calm my brain down so I will probably stick with that for a while. But yes, you WILL get better. I'd say at this point if I get weird symptoms, it's no different than general annoyances we all had prior to the neuritis. Some days are 100%, some days are 95%, but there's NOTHING I can't/won't do that I did prior to all of this.
Sarah Lucas thanks for the comment I appreciate you relating and giving your story as well! There’s always hope with these disorders. Glad you’re getting better!
@@ErikvonStrongber It was probably around 2 months. I for sure had an increase in anxiety. Though I will say, by 1 year I felt really great (95-100% recovered) so I started tappering off the lexapro and it clearly shook up my vestibular system so I'm doing VRT again to recover from that. It didn't take me back to where I started but long walks a crowded restaurants cause mild symptoms again.
@@sarahlucas2557 nice to hear. I am struggling with the decision of taking the same med. I have been so stressed out that i have developed tinnitus as well and now i fear the sides of the med even more. I have seen two good doctors and they have both recommended lexapro
I’m not comfortable telling someone to take medication or not. I will say I’m glad I took it. It was clearly doing something for me in addition to my VRT. Everyone is different. And everyone reacts to differently to drugs. You know yourself best.
Relate 1000% to everything you said. Even the facial numbness!! Always on the left jaw side... so glad i'm not alone in that. My doctors wouldn't take me seriously at first... they said it was anxiety. Like wtf. I've had it for 2 years NON STOP. It's made me suicidal at times. Had to stop work and I was convinced I was dying for most of that time. I stayed at home most of the time too... but lately i've been forcing myself to be more active, and to do more things like cooking my meals etc. I've been feeling a bit better lately...still can't work yet but i'll get there!! I'm more able to do things now :) I've let a lot of the fear go now... which has been the most important thing for me. Just proving to myself that I can actually do things regardless. I'm diagnosed with VM and PPPD. Pretty sure its just PPPD at this point.
2 1/2 years of this non sense. I have good and bad days but beating it entirely is extremely hard!! Take a look at TMS, basically this condition turns into a mind body condition we’re you are healing but can’t get out of your own head! Constantly scanning and making the symptoms worse! Helps to relax and talk with people. Also stay active!! The more you can get your mind focused on other activities, the faster your brain will agree you are no longer in danger. Prayers for you and anyone dealing with this condition!
Hi. Many thanks. This is my story, like yours. Symptoms are very same, i just have shaky vision, specially if i go from light to dark room, its getting better, but still i experience. I am watching my diet, it made a huge difference. However i got a mild runny nosy, and yes it brougjt symptoms again...have been fighting with vestibular neuritis for about 4 weeks. In mean time i was admitted twice to the hospital. First time they didn't do anything, second time they seriously, like you it was freak mode for second time i was in the hospital. So i got ct scans, bloods, neurological tests. All came absolutely fine..So still no-one could tell me what was wrong.. 😒 so i went to the private clinic and they gave the answers, so they diagnosed vestibular neuritis. So i started vrt exercises as well trying to get be active and fighting with panic attacks and anxiety. Its such weirdest symptoms you could ever experience in your life.. it very tought. It changed all my entire life.. thanks for sharing 👍 😊
I'm happy to start seeing more videos like this ! I'm going on month 10 of this, I still do vrt I've came so far , I see more normal life I drive every day I go to the grocery store a lone things like that. I had virual labrhthitis pretty much the same thing I just lost a little if my hearing low tones. The anxiety of this is hell though its beyond crazy. I still have a little imbalance its slowly returning I still have off moments but other than that doing so much better your right you just got to move. I remember the first of this I could not walk a straight line i could see right ir hear right. The most scariest thing I'd ever been through, Look forward to your update video!
Thanks Valerie! Appreciate the support! I’m glad you’re slowly getting better. Vestibular illnesses are horrifying with the constant symptoms they cause. It takes so long to regain full recovery. You will it just takes so long.
Ms.valerie I'm 25 and have had it for months now. It feels like an out of body experience. It's hell on earth. My brain feels fried. Did you get full recovery?
Vestibular Neuritis is awful. Strangest symptoms ever. I understand how you feel. My VN started in May, the constant dizziness, panic attack, palpitations and anxiety.
Hamaad Tariq It was a very long journey. The anxiety was the worst. I didn’t take any medication. You have to ride it out. It’s a long process. Inshallah you will get there. Don’t stress and keep active. For myself this has to be the worst period of my life. Then doctors are unsure what’s causing this disorder/illness.
Hi eric im going through the same thing 😢I don’t leave my house I get dizzy I lost all my balance im depressed I haven’t walked my hair this is the worst of my life . I will see an audiologist next week 😢
Thanks for posting this. I have vestibular migraine and/or PPD - the triggering event was about 5 weeks ago (I suppose it's not officially ppd unless at least 3 months have gone by).
Holy crap! I think I might have this. Going on 11 months now. I have tinnitus in both ears, fullness, pressure in head, nausea, right arm weakness. The worst symptoms is feeling like I'm on a boat 24/7. I also have this weird feeling like I'm being pushed, feels like a phantom ghost. Tried everything.
I got my first attack 11 days ago. Came on fast! Vertigo, nausea, vomiting. Walking is hard. Can only look straight. Never knew this existed. Cant drive or work. I put up heavy exterior awnings 16 feet up on a ladder. I don't see myself able to do that work anymore with my vertigo.
I would recommend not doing a physical labor job with the dizziness. Go see an ENT and get an appointment to have vestibular testing from a audiologist clinic. Watch the rest of my videos to see exercise. It’s rough debut you will get better!
Hey Eric. Thanks for the vid brother. I've had this just over two years. And on the whole it is better. I'm at about 80-90% most days, but have relapses every now and then. Please could you share info on your triggers, as well as thoughts on diet. I'm a bit of a diet skeptic. I also think my triggers might be exercise related. I wonder if after a "heavy" session my brain/ ears reset in some way. Thanks man. Nic, South Africa.
Nic Husted thanks for reaching out, I’m glad you’re doing better! Diet wise it depends. I think VM has better results with a diet than VN. It’s always good to be eating healthy though with this. In general it just helps your body be balanced and allows you to go longer periods without the dizziness I feel like. Lack of sleep is the biggest trigger that and life stress. If you can get sleep and control stress you’ll rarely be spinning. Also do not drink alcohol that is a huge trigger. Just give it up. These are what have been the main things for me. Never stop doing VRT even when you feel good it keeps your system compensating which is good. South Africa is beautiful i did some work at UCT some years back. Cheers man.
That’s awesome Marcos!!! Seriously we need more to comment back when they start getting better that way people will see reading the comments. What was your secret?
@@ericfixler After running from Doctor to Doctor for 9 months I realized that they would never really help me. All the doctors could not even diagnose this condition and when they did they could not agree if it was, visual vertigo, labyrinthitis, anxiety, Alice in wonderland syndrome, derealization, Dissociation, , PPPD, PPV, vestibular migraine, so I like the name someone described it “vestibular something”. The one thing they would agree, though, was that I must take medications for it. Them all wanted to give me pill and send me home. The neurologist said "you are having migraine. Take this migraine pill every day for 4 months, contact me after 4 months and Ill give you more". My doctor said, "take this pill for anxiety, this one for pain, this one for inflammation and this one to sleep, get back to me in few months". Even the physiotherapist wanted me to take Effexor. She said, ""go to the pharmacy and buy this med, take it and do the VRT exercises OK? And remember, without the Effexor you wont get better”. And the VRT exercises? To me they didn’t work. Basically. You’ll watch your finger moving from side to side to “desensitize” your brain. Stand on one foot in a corner to train your proprioceptor and restore your balance. If I must "desensitize" my brain to improve the dizziness and do balance exercises. I’ll move, a lot I’ll do every daily activity I can and make it “fun”, not a difficult shore. I’ll play with my dizziness. I won’t get mad at it all the time. And NO-MEDS to me, thanks. 70% of north Americans are on prescription medication and I won't be part of that number. Ill find my own way out of this". I started doing lots of daily activity; I went to the supermarket and got dizzy. Kept myself calm. Stayed there for 5 minutes, next time 8 minutes, next time 10 minutes. Started riding my bike every single day even when dizzy, doing lots of cardio in my apartment, getting neck and shoulder massage once a week, taking vitamins and supplements daily, changed my diet; lots of fruits, vegetable and protein in every meal, stopped eating sugar, avoiding stressful situation that does not contribute to my recovery, drinking lots of water every day as all, and much more. I made big changes in all areas of my life. When I stop trying to understand what the hack was happening to me, when I stopped being nervous, angry, afraid, anxious, stressed, frustrated and just “went with it”. Let it be and keep on doing my daily routine as usual and gave to my body all the support it needed to restore its mental stated without dizziness, it worked. I started feeling better.
Hi there Eric. Thanks so much for your video, the info, the support, advice and reassurance that you have given us all 🙏❤ I just have a couple of questions for you if that's ok? During this whole PPPD experience and process - as well as the dizziness, brain fog and confusion, I also feel very jittery and giddy and the chronic fatigue is incredibly overwhelming. Has that been the same experience for you too? At what time did you get your energy back? It is so hard to push through the symptoms to do the rehabilitation or exercise when you feel so utterly tired. Thanks, Louise.
Hi Louise, hang in there I know what you mean with the fatigue. For me that piece came and went for the first part of the illness. You have to have a routine and push yourself through the day. Overtime you’ll develop new resistance to the tiredness. Sleep is critical along with eating things that give natural energy. You can always get a blood test and see which vitamins might help. They can see what you’re running low on. Just make sure you do the exercises and look into getting on Effexor or Cymbalta. I know people hate meds but you need them with this illness.
@@ericfixler you're such an awesome person! Thanks for the info, the support and for replying. I really appreciate it! Onwards and upwards now... I hope you continue to feel better. I'll do what you said and I'll keep you posted ;) ❤
Hey, there is a great community on Instagram that can help you. I suggest you watch Find your chappiness and Monica (New life sparrow). I am a senior in this condition, had it for longest but they are really informative and positive about all of this.
Eric, can you please come back and share how you’re doing and how is the Effexor? My doctor wants me to try it and I’m terrified from all the horror stories online. It would help SO much -Lace
Lacey Bretthauer I’ll try to make some time to do so. At the end of the day SSRIs all do the same thing so it comes down to which one your body responds to. You can have a genetic test done to narrow that list down for your body type. Effexor has been great for me. I respond great to it and I’m very rarely dizzy at all. I’m back to my normal life. You have to take your meds and do VRT therapy though.
How are you doing Eric? Are you going to the mayo clinic anytime soon? I have seen two doctors and they have both recommended lexapro. I know i have to take it, but I am still struggling with the idea. Especially because i have tinnitus too now.
hi, OP - I have this now and a few years ago my glands both sides of neck are sore, currently swaying, light headed, all what you describe. Eyes also feel tense - I had a bout of spinning dizzy about a month ago also, and my left ear I feel spasms and hear blood flow. pressure in ears also (full feeling) but they told me I have no infection and hearing is fine. feel like floating, list goes on. Do you feel like you are always on the start of spinning room dizzyiness? and can you name those medications your on? Thanks
Lyndsey Milligan I’m glad you’re getting better! I am starting to feel about 86% but still go in and out sometimes. I’ve gotten way better even since posting this video though.
Lyndsey Milligan I know a doctor who tells me Cymbalta is for Vestibular Neuritis and Effexor is more for Vestibular Migraine. I have VN and I am on Effexor but it’s actually still working and has taken away the dizziness and brain fog for the most part. You have to take it for 8 weeks before you really start feeling different.
How are you now? I am suffering from Labyrinthitis since last 5 months or so. It got better within 20 days. Dizziness was completely gone. Then again after 2 months it again came back. So dealing with it now.
Hey man. Thanks for the video. Among so many horror stories of people who have this for 20 years this really cheered me up. AI have some effexor in my cupboard. Havent started it yet. Still to scared I really want to see if I can get better without it bc i have heard horrible things about it. I just started vision therapy tho so we'll see. How important do you think the effexor was in your recovery?
? I had covid in January of this year. I got vertigo as an onset two days in. I had a VNG test in March showed 33 percent damage went back in May to check again they said they showed nothing. Still dizzy woozy feeling in head weird when walking ex specially outside walking. I feel like a bobble head eyes feel really weird. Last VNG test showed oculomotor abnormality. Been to many drs. Know one seems to know what’s going on. I have suspicious idea it might be pppd now. Anxiety is high. Just want to feel better. I walk and stay active. Had light sensitivity wore glasses and hat for a while. Don’t have to anymore. I had migraines really bad but been two months since my last major ones. I get headaches on occasion but short lived. Eyes feel like a camera. Pt showed both eyes skip a bit to each side. What is a timeframe for recovery? Thanks Eyes are the worst. Feel like they jump like a visual vertigo. This sound right Walking outside is the worst. Also find when it’s overcast I seem to get headaches. With pppd did you ever feel like you were getting pushed. Did you have eye issues?
how far into your vestibular neuritis/pppd did you start taking that SSRI? Apparently sooner after the event you get on it the better the results i am going on 6months in
Hi, is it pppd if I have symptoms which is very sensitive to vibrations such as when someone stomps on the floor(our floor & furniture are wood), when the table suddenly moved, someone walking on wooden floors, heart pounding and even when Im in bed feels like there's a loose screw? This feelings are more amplified now that I'm dizzy, always! but the house has always been like this. Feels like a earthquake tremor everyday, 24/7. Hope you can help me
Yes thats one of my main symptom!! The sensitivity to vibration or shaking. If in in a car thats turned on I feel the engine vibrating and I cant stand it at all!
i am feeling dizzy since november 2019 feeling of swaying and then as time passes by added sensation when i am walking and stop the sensation feeling like i am gonna fall same also while walking straight and then turn my head different position i am out of balance. Lying down sometimes can feel swaying sensation and while eating also normally we need to up down the head out of balance also but just a feeling inside my head. Any thoughts brother?
Mecua Yalishanda I’m sorry you’re having to experience those daily symptoms it really is a test of your personal will. I would say you need to start doing VRT therapy and focus on the areas of your body that creat balance. Weirdly enough this does work. Think about your feet and hips while walking, don’t give the dizziness time of day in your head just focus on your other body parts. Over time you will get better it just takes a long time, but you have to start Vestibular therapy. RU-vid exercises, I even have a video where is show them. Do these exercises 3 times a day for 5-10 minutes each time. Also consider getting on meds like an SSRI. Effexor is a pretty good option.
@@ericfixler i am scheduled to have mri mra and vng test on wednesday hopefully all is normal a bit scary. Base on my symptoms does it sounds familiar? It is not the sorrounding typically for vertigo symptoms it is like inside my head. Riding on a boat and it is wavy and i had tinitus ringing in my ear. Basically i still do not know what is exactly happening to me just went last 2 weeks to ENT cannot see anything wrong physically so thwy required me to do MRI MRA and VNG. Kind a exhausted feeling everyday for months you are correct when i drink then it will ease the dizziness.
I have experiencing this dizziness and disconnection from my environment since beginning of May. I am scared. How did you find help? How did you find cure?
@Neil Cognito I understand you now. That's why doing the vestibular rehabilitation exercises are fundamental. Also, physical activity is really important. You must get active and get your body moving in different direction to stimulate your vestibular system.
VRT, learn to get your mind off the symptoms by focusing on other parts of your body like hips and feet that help you balance and get more sleep, get off alcohol, learn to relax through the symptoms and over time doing this all will let you get through it and back to a normal life. Look into getting on Effexor or and SSRI it will also help.
I had terrible side effects with several SSRI and my doctor said there is no other solution.. He said PPPD is chronic and I may have to get used to it 😞
@@ericfixler I am doing pinpointing, tracking and head rotation exercises. I do lots of walking and biking to help me get through this. My doctor put me on escitalopram. What r the side effects of Effexor?
@Marcos Carajol I made VRT for 5-6 months and had very little results.. I saw Joey’s videos but I don’t know if it would be really a treatment as the last publications of the Mayo Clinic say PPPD is not treatable without medication.
Marianela Miraglio I didn’t get my first break from 24 hour symptoms for a month and a half at least. Then it goes from off and on. I highly recommend VRT therapy and Effexor 75mg at least. It will help with it all.
@@ericfixler how long did you suffer from the symptoms before starting the effexor? I have this 24/7 for 2 years now… I hope it’s not late to start the effexor..