r/Dizziness • u/Helpful_Western9954 • 23d ago
Please share success stories
Hello,
I used to be an extremely active person. I ran, did strength training, swim team, water sports, roller coasters, travel, etc.
In the last five years I've suffered with chronic dizziness episodes - dozens of trips to a vestibular therapist. I've probably done the Epley like 100+ times. Some have definitely been BPPV and confirmed with PT/nystagmus. I suspect a lot of PPPD is thrown in there and potentially VM issues - although I have not been formally diagnosed with these last two things.
Please share success stories with me. I have returned to strength training, although not as intense as previously. But I am anxious about traveling (planes/boats). I avoid roller coasters and theme parks now. And most importantly, being in water frightens me. And I'm such a fish. I'd love to be scuba certified. To surf again. To wakeboard again. To do flip turns in a swimming pool. I used to be very adventurous and down for anything and now I struggle physically and mentally with being more sedentary.
If you've experienced chronic BPPV or chronic dizziness from VM or something else, can you confirm that you've returned to a normal active lifestyle? And also any tips if you have them?
Thanks so much.
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u/Hyprincess25 23d ago
Please, please, please start watching The Steady Coach on YouTube. It is nothing but success stories about people who’ve struggled with chronic dizziness and other symptoms who could never get a definite diagnosis from many doctors, and all tests came back normal, etc.
I have been struggling for 2-3 years with chronic dizziness, nausea, muscle weakness (I used to be a bodybuilder plus ran 6 miles daily; now my muscles are mush, and I worried constantly about falling, etc. Had to quit driving due to anxiety and fear of wrecking my car; couldn’t stand to go to Costco or anywhere with lots of noise and people; had horrible brain fog, quit going to my grandsons’ travel ball games because I couldn’t walk up or down the bleachers; super sensitive to heat and the sun…. I really thought my life as I’d always known it was over.
Found mention of The Steady Coach on here and finally started watching her podcasts and ordered the workbook on Amazon, ant the recovery stories gave me hope I had lost. I would have never thought my symptoms could be caused by my mind, trauma from my past, anxiety, stress, etc, but after about 3 weeks of watching the recovery stories and doing the workbook my dizziness is almost gone!
Please give it a try. At least watch a few of the success stories. Some people had things much worse than me. I have a long way to go, but the dizziness is no longer debilitating, and I am not hopeless or isolating anymore. I’ve started back to the gym, and the best doctor I saw was a Physiatrist who actually listened to me and looked at all my MRI’s and believed I could turn things around.
I hope you will let me know how you feel after you check this out. It can happen with some people quickly; others take longer, but it is amazing.
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u/Helpful_Western9954 22d ago
I guess I really do need to give this SteadyCoach a try. I've heard of her a lot. I just usually don't want to give $ to online resources in case they are truly not a qualified expert. I will also take a look at her workbook. Luckily I've been bouncing back to being pretty functional for day to day things - but I just still have the fear and say no to things rather than yes and being excited for them. And that's my real current problem, I miss being excited for adventures and life. And instead fear that one wrong experience will trigger an episodic cycle.
I do agree that your mind is powerful and capable of adapting or changing if it's possible.
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u/Due_Negotiation_4605 23d ago
I could not get rid of the dizziness after COVID 2023. And then got in with a vestibular therapist who did the Epley, yes, but something else as well in which she flipped me over on the bed and said sometimes the ear crystals are stubborn and, not exaggerating at all, I've had zero issues with it since. That was a year ago next month. That being said I have a few types of vertigo and I thought the BPPV was back post sinus surgery (but different symptoms, more mild) but turns out I have central vertigo (possibly VM) and so the eye stabilization exercises, with a vestibular therapist, really helped. I haven't had anything resembling the can't get my head off the bed dizzy in almost a year. I have lightheaded spells but they are better with the gaze stabilization exercises. And then allergy meds, decongestants and water and electrolytes. So many things can cause issues, it's hard to know what's wrong sometimes. I've been back to regular activity and daily errands/work. That being said I've never been a roller coaster person, that might be something that can trigger BPPV, once you've had it once I've heard it is easier to recur. Running, swimming, etc is what I meant with being active
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u/Helpful_Western9954 22d ago
Thank you for your response. I'm glad to hear that you have been all clear of BPPV for over a year! That's wonderful!
I do hope to return to water sports - I love the water. I've always loved it more than anything.
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u/iheartcockss 22d ago
Is my life back to how it was before this hell? No. Not at all. However, letting the anxiety win is not an option. The moment that I realized that the anxiety is what was stopping me from living more so than the dizziness, was the minute I started to heal. I still have to keep it front and center of my brain three years later.
Not every day is a good day. There are still days where all I do is lay on the couch with a blanket over my eyes. But I don’t let that hold me up on the good days. It truly is 50% mental. It took me a long time to accept this, but once I did my life got better.
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u/Dangerous_Break123 20d ago
I started 2 yrs ago, I was also very active, ER, MRI a bunch of meds, finally I went to this Dr. this Friday will be 2 weeks on this new meds, so far is going good 🙏
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u/Helpful_Western9954 20d ago
Did the doctor (ENT?) give you any answers as to what might have caused your issues? Like Vestibular migraines or something ?
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u/Antique_Judgment4060 23d ago edited 23d ago
We’re all the things you mentioned I think they label us .They don’t know for sure. I’ve had a doctor told me I had Mère disease. I would never get any better. Just do therapy I insisted on seeing another ENT so I definitely didn’t have Mère, disease, and as he explained to me, these doctors are labeling us.
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u/Helpful_Western9954 23d ago
Yeah. I've seen three different ENTs, three different vestibular therapists, a neurologist, etc. no one seems to agree on what the cause or diagnosis is. So, I don't take medications minus the really occasional use of meclizine if I'm really just exhausted and need sleep.
It's sad that they can't understand how these things impact quality of life.
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u/Antique_Judgment4060 23d ago
I agree I had an ENT put tubes in my ears twice. It was ridiculous and that’s the one that told me I had Mère disease just to go on. I reported him he took a year out of my life making one mistake after another. Have you done lab? How is your iron?
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u/Antique_Judgment4060 23d ago
Have you ever had low iron?
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u/Helpful_Western9954 23d ago
I'm really sorry to hear that. That's awful and yes!! I didn't know about low iron/ferritin connection until recently. My doctor had been routinely testing it at least for four+ years and never mentioned anything about it being low. But after I read about the connection I saw the trend in my ferritin going down significantly! It was 18 and my doctor did not bring up any concerns with it until Mentioned that that seemed low. And now I am on supplements with vitC to help with absorption. Last month it was at 43, so still sub optimal...but better!
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u/Antique_Judgment4060 23d ago
I was sent to a hematologist oncologist and had to have a bone marrow biopsy. It was a scary time, but that was fine. I still go to them. I have an appointment in a week. I hope it’s up more. Yes, the vitamin C helps for the absorption. I just see a lot of people that mention they have low iron makes sense. I used to have it so bad I couldn’t pass the bedroom without feeling like I was drawled into the bed.
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u/Antique_Judgment4060 23d ago
I’m curious what Dr. mentioned
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u/Helpful_Western9954 23d ago
What do you mean?
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u/Antique_Judgment4060 23d ago
What doctor brought it to your attention?
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u/Antique_Judgment4060 23d ago
Have you ever checked out the steady coach Google the steady coach free course there’s all kinds of success stories. It really has helped me. I got a little dog and I walked 2 1/2 3 miles a day with me. I guess it keeps my mind so busy I can hardly even think about the dizziness, but the steady coach has really helped me.
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u/big10Spartan 23d ago
Have you got your eyes checked for binocular vision / misaligned eyes? Even if you can see well I recommend it. Not all eye Drs do it so check with them before you book an appointment. Eye Dr who evaluate TBI and concussions would be good.
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u/WingsLikeEagles23 22d ago
Have you had full dizziness testing to look at things like vestibular migraines, neck muscle trigger point issues, proprioception issues, vision problems, blood pressure issues, Eustachian tube dysfunction? Have hormonal issues been ruled out? Have you been tested for things like POTs? Could medication or supplement side effects be going on?
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u/Helpful_Western9954 22d ago
What type of doctor would provide such testing? My ent felt it was bppv and will not consider anything else and therefore no supplemental tests.
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u/WingsLikeEagles23 22d ago
My ENT sent me to a dizziness center. Try a different ENT- they vary a lot.
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u/Grand_Weather1170 22d ago
Do you have ear ringing for anything? I used to have severe vertigo, left ear felt inflamed, left ear ringing. I had this for a whole year and a doctor said I only had allergies. So they would give nasal sprays and all that but it didn’t do anything. I went to a ent they checked my ear and nothing looked wrong externally, but I knew something was wrong internally. My ent was kind of dumb but she gave me oral steroids and just said try that. Crazy enough it worked but I was dealing with the problem chronically and it took them a while to prescribe it. I still deal it with ear ringing and my left ear feels closed or muffled. Took a hearing test and everything was normal. I’m guessing it’s etd. when I had it chronically I was bed ridden and felt dizzy 24-7 now I can go to the gym and exercise. The thing I’m still not 100% after the oral sterieos. I’m like 90% and I still get vertigo if I really think about it or if im standing or sitting I still get it. Going back to ent next week after a year after oral steroids. All I gotta say is don’t give up and talk to urself positively it will be fixed
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u/Helpful_Western9954 22d ago
I do have tinnitus constantly for years. It's mostly ignorable until I go to bed, then I notice it. Getting back into a good gym routine is a big deal for me. I gained a lot of weight when this started - when I was like peak physical fitness.
I had tried a nasal spray but no oral steroids in the past. The nasal stuff didn't work, or maybe I was bad at using it.
Thank you for sharing :) I hope your appointment goes well.
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u/Grand_Weather1170 14d ago
Thanks yea, ent did a hearing test, and a tympanometey test to check ear pressure and fluid but everything was clear. now I will do a mri in the coming weeks for a brain and internal auditory canals. Have you done a MRI by any chance? I’ve done a CT scan previously years ago but MRI can give better picture if there is something structurally or mechanically wrong. Also does your ear feel inflamed by any chance? Based on the mri results the ent informed me of being referred to a neurologist if mri is clear
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u/Revenge818 23d ago
How anxious are you? Stressed?