The first time I had Vertigo was in July of 2019. I’d jumped into an indoor pool with my grandson and suddenly the world spun. We were in a very small town just outside of the north end of Yellowstone and I thought I was having a stroke or maybe some kind of elevation sickness. I managed to get back to our hotel room and about 5 hours later I was fine. Fast forward two weeks and boom…spinning again. GP diagnosed BPPV and sent me home with instructions for the Epley Maneuver. Spinning symptoms off and on and no luck with Epley…always made it worse. In Feb 2020 went to and ENT and he essentially told me he didn’t believe I could be dizzy for hours at a time but wrote me a referral for PT. By the time I was spinning again the referral wasn’t valid any longer and I kind of just accepted that this was my life. I would go several months without symptoms and then a week or two with vertigo off and on for hours at a time. My new GP suggested PT again last year which I tried with no luck. This summer the frequency increased and I started suffering from migraines as well. Went back to the ENT and he still seemed to think I was exaggerating but suggested I see a neurotologist. It took a long time to get appointments with both the ENT and specialist but finally I had a new diagnosis…Vestibular Migraines. 5 weeks ago I started 10 then 20 mg Nortriptyline. Today he took me off because of the side effects…days long migraines, increased BP and Resting HR at night. I have a televisit in two weeks to discuss results from the MRI I had last week and how to move forward. Not sure where we’re going but any suggestions are welcome. After nearly 5 years of symptoms with no relief it’s wearing me out.
You’re on the right path. You have a diagnosis and are actively seeking treatments. Now the hard part is patience – not every treatment will work and each treatment takes time to fully kick in. Be patient for a few more months as you try new medications and you will get better. Have faith
Thank you. I’ve been spending quite a bit of time here reading about all the potential treatments. Finding a doctor (neurotologist) who takes me seriously was a relief. Not sure what to expect from the brain MRI. Should have results before my next appointment. In the meantime I’ll keep reading!
The MRI is more of an insurance to rule-out anything else (improbable given how long this has been going on for you)
Thanks for that information. For now I’ll wean myself off the Nortriptyline and wait for my next appointment and hopefully a new treatment to try.
did your doctor say to wean the nortriptyline?
edit: nevermind i cant read
Yes, My BP jumped up, normally on the low side, my resting HR jumped about 7 or 8 BPM and I’ve had worse migraines the last two weeks than the ones that started this summer. I’ve only been on it for 5 weeks but he doesn’t like the results I’ve been getting. I had about a week and a half symptom free then vertigo and migraines came back. Do you think I’m giving up too soon? Maybe I should try the 10mg dose still?
I think that’s really a call that your doctor has to make honestly. I know from other users that amitriptyline can work faster than other drugs (say venlafaxine, for example), but it normally gets titrated to doses higher than 10 mg for efficacy, especially if you’ve been more-or-less chronic for the past few years.
My personal philosophy is to stick with a drug until it becomes medically dangerous to remain on it, as determined by the physician. Again, your doctor has to make that call.
Okay thanks…I’ll follow the doc’s orders and start over. I appreciate your feedback!
I agree, you finally got over the highest hurdle when you found a competent physician and received a diagnosis. In my experience successful treatment is a trial-and-error process but it’s worth it when you finally get your life back. Have you found Dr. Timothy Hain’s website yet? If not you might spend some time browsing it while waiting for your next consultation. It helped me understand just how complex this condition is and the many different treatment options that work for some but not for others. Don’t give up! There may be a single drug that works for you, or you may need a combination of drugs, or you may need drugs plus other modalities, lifestyle changes, etc. But keep at it, Lulu. If one thing doesn’t work try something else. Ask questions. Be a little pushy if you have to. Take care.
Thank you for the great advice and I’ll check out that website today. I’m still in the investigative stage since I just got an actual diagnosis in late November. I’ve spent the last 4 1/2 years stumbling around in the dark…literally and figuratively. I’m finally realizing what I’ve been going through is a real thing and not just the “dizzies” like most of my friends seem to think it is. I have hope that the new doc will have some answers at our next appointment but I want to be prepared.
Seconding Tim Hain’s website. He wrote the playbook for treating this condition
If you are into doing your own research - give Meniere’s Disease a little check out. Your symptoms seem so much like mine were over 50 years ago when I first started down this path. For me the condition has progressed and morphed to include MAV, and now also possibly PPPD…it seems many of these conditions are quite closely related in the long term. Like all similar conditions - no ‘test’ will diagnose Menieres, so Dr’s work on symptoms and their own knowledge base (or lack thereof ) . BTW - I totally understand your frustration - it took me 10 years to get a diagnosis…and lot of skepticism along the way!!! It is so sad that little has changed since the '70’s!!! I hope your next appointment brings some clarity for you!
Thank you Mazzy. Boy 10 years is a long time to go without real answers. When my symptoms started changing and getting worse early last year I did do some research on Meniere’s and thought it might be a possibility. I joined a forum and read everything I could on Meniere’s and still don’t know if that’s a possibility or not. It’s the reason I scheduled another appointment with the ENT actually. I had to wait several months for an appointment because they wouldn’t see me without doing a hearing test first. By then the headaches were becoming more frequent and worse but I still have excellent hearing. No tinnitus to speak of other than occasionally and a weird intolerance to loud noises, but the vertigo was keeping me home for days if not weeks at a time and then the headache would either follow, precede or overlap with the spinning. The ENT sent me to an associate, a neurotologist, and I didn’t tell him what I thought was going on, just described my symptoms and he came up with the VM diagnosis. He even tried to trigger vertigo but couldn’t. I don’t know if he’s right or not but I think he probably is. It can all be very confusing because everyone seems to have a broad and varying range of symptoms for both diseases. One thing I don’t like to do is diagnose myself even though I do try to be my own advocate and pursue wellness very actively.
have you had a hearing test? can rule out Meniere’s pretty fast with that…if you’ve seen an ENT i imagine they performed one and found it wasn’t an issue…
Yes I had one in 2019 and another in October of last year, no hearing issues so I assumed not Meniere’s either as that seems to be a pretty consistent symptom.
Yep, the lines are very blurred between a number of conditions. Sheepdog_lord is correct - if your hearing is still fine, it’s unlikely to be Menieres. I did’nt realize that you had already had hearing tests. By the time I got a diagnosis, I had already lost almost all the hearing in the left ear. I lost what remained due to -at the time - cutting edge! - surgery. I, personally, have also never had headaches. I wish you luck with finding answers.
Thanks Mazzy, I’m at least looking forward to having something to try soon other than the supplements I’m starting. I’m sorry about your hearing.