Finding a cause for my Vertigo

[nwfrugalista]

Hope this finds everyone having a peaceful and relatively pain-free day—

I have been suffering from vertigo for almost a week (the attack began in the middle of the night last Friday). I’ve been seen twice so far: the first trip was to urgent care where they tried to patch me up with Meclazine and Zofran, and after three days on those meds with no improvement a second trip was made to my PCP/internist, who attempted the Epley maneuver (to no avail, sadly), gave me antibiotics to clear my sinuses, and prescribed a higher dose of Meclazine as well as Diazepam (Valium). I’ve had only slight improvement since, and the longer this goes on (especially after eliminating benign causes) my internist says the next step would be referral to a neuro for a brain MRI to determine whether this is ‘central vertigo’ as opposed to the benign/peripheral type.

The only other time I had vertigo was five years ago, which resulted to referral to a neuro who ultimately ordered a brain MRI (in order to rule in/out MS) which instead of confirming MS lesions, revealed a small midbrain tumor (for which I underwent craniotomy/pinealectomy to remove it in 2017). Though the surgery was successful, I still have multiple neuro symptoms (vision problems, constant nerve pain, intermittent weakness of left arm and leg). Throughout this period I’ve also suffered AI symptoms which my rheumatologist originally diagnosed as SLE but later felt was more MCTD. The return of this symptom has me revisiting that stressful time and wondering if I might not have MS after all?

My ask is—with thanks to all who’ve read this far—for those of you who have suffered with vertigo, can you describe how it felt for you and anything which you found which helped? It’s going to take a while to get referred to a new neuro (my former local neuro has left practice) and potentially have another brain MRI, and anything I could do to get some relief would be most welcome.

Thanks so much!

[hopeandgrace]

I had a bout of Vertigo last year. The epley maneuver helped, but I couldn’t do it alone. I bought this hat called DizzyFix for like $60 and that totally helped me. There’s this attachment on the hat and it’s helps to do the maneuver correctly.

Hope you find some relief! Lifting up a prayer for you.

[nwfrugalista in reply to hopeandgrace]

thanks so much hopeandgrace—I’ll look into the hat 💜🎩

[Kenu]

Good Morning ☀️ I have been dealing with migraines and dizziness for the last four months and have tried several drugs and have been doing pt also. I started doing Botox injections in my head and neck for migraines and dry needling in my face for sinuses. This seems to be starting to help some and migraines are there and dizziness but not as server 🤞🏼 Hopefully this is the right direction. One doctor thinks ms related, another ♋️, another from stroke 27 years ago and another thinks it’s from Covid issues lingering 🤷‍♂️ It seems like they are all guessing and not sure what’s going on. That’s why I decided to try Botox and needling (acupuncture). It sure gets old dealing with not feeling well 😖 I just keep pushing thru it and staying as positive as I can with lots of prayers and research 🧐. Hopefully you can get things figured out as it’s no fun when vertigo effects us every day. 🙏👍🏼😉

[nwfrugalista in reply to Kenu]

thanks for your reply Kenu—I hope the Botox and needling (is that like acupuncture?) continue to bring you relief. This week has been pure misery for me, I’m unable to do anything, even lifting my head sends waves of nausea and dizziness—I can’t imagine dealing with this for a long haul.💜

[twooldcrows]

have had off and on ....lots of the times i have forgotten to eat ...be safe ,keep asking for doctors to look into it ...be safe .....love and happiness....

[nwfrugalista]

hi twoldcrows, here’s hoping your vertigo stays off! 💜

[ahrogers]

Success of the epley maneuver really depends on who does it. My neuro said he is bad at it. I had it done by a PT and it helped tremendously. I take Gabapentin at bedtime and it pretty much controls the rest. I probably have both central and peripheral vertigo.

It started a few years ago. I would have that sensation of spinning like when you were a kid and spun in circles then stopped but things kept spinning around you. It initially only happened when I changed positions but then one day I would spin pretty slow all the time but I was still able to function. Tried Dramamine without improvement. This went on for months. Later, I was having more trouble walking and was referred to PT for that. While being evaluated I had vertigo while changing positions and that is when she did the epley maneuver.

I would also get a different vertigo where the world spun in all directions so there was no way I could walk. It would happen out of the blue even if I was just sitting still. This is the one that persisted after the Epley maneuver and is pretty well managed with Gabapentin. I might look into that hat. It probably helps you do the epley maneuver correctly on your own. The crystals in my inner ear may have gotten loose again and need to be reset periodically

ou can ask for referral to PT for vestibular rehab and they may be able to help.

Good luck! I know how much vertigo affects quality of life!

[nwfrugalista in reply to ahrogers]

thanks for the reply ahrogers, I do wonder how/whether we will be able to discern if it is a central or peripheral issue, as there are possible causes on both sides. Either way, I am desperate to get rid of it as it has been very miserable! I’ve been incapacitated for a week now and only just late yesterday started feeling the least bit less dizzy. I’m due to go back to work on Monday (per the doctor) but I’m not sure whether I’ll make it or not.💜

[ahrogers in reply to nwfrugalista]

Best of luck to you. I was lucky to be able to continue working when I had vertigo that lasted a couple months. It was a slow spin.

[Jesselespaul]

Who knew we had crystals in our ears? I didn't until I fell - concussion and vertigo. I was so lucky that the Epley maneuver was the solution. PTs are the best at this - I was taught to perform this on myself. It's been about 2 yrs with no repeat - I wish you the best luck!

[nwfrugalista in reply to Jesselespaul]

Hi Jesse Les Paul—I wish the Ellet maneuver had worked for me that is for sure! The doctor said we could keep trying it at home but I felt no difference.💜

[JTZES]

That is the main effect I have. MS has taken up a big bite of my vestibular nerve that controls all of your balance.

If you go to a PT that specializes in Vestibular Therapy to do the Epley maneuver properly it may not have worked. You are the right meds not at the right dosage.

Over the course of a day I will take 3 doses of meclizine 75 MG per dose and 3 doses of Valium. If you have MS you would have a great amount of fatigue. The medication will cause you some of this but if your not having that issue currently I would say you have a loose crystal in your ear. You need to be Epley maneuver every day to try to reset that crystal.

[nwfrugalista in reply to JTZES]

sorry JTZES but I’ve had a bit of trouble following the second paragraph of your response but do agree in my case maybe I need an increase in the Meclazine—I’ve been avoiding the Valium except at night to try to get some sleep because I don’t like feeling ‘loopy’. Best wishes to you 💜

[JTZES in reply to nwfrugalista]

Sorry for the delay. You are correct. I'm am suggesting to up the dose of Meclizine. Continue to take that each time you take a dose of Meclizine. I know the meclizine can be expensive and your can write a script for it and Good Rx to cut the cost.Your doctor will say that 75 MG a day is not recommended and the doctor will say that much should put you to sleep or knock you out and it will.

So to off set the fatigue my doctor has prescribed Ritalin extend release and 10mg of immediate release.

It is a viscose circle.

[kdali]

I don't have advice on vertigo, but I think that if you are having the same symptoms you had when the tumor was discovered, then trying to visit your neurosurgeon might get you the MRI faster than waiting for a new neuro. If you just had an ER visit, you should mention this when making your appointment, with either practice, so they may get you in sooner as a follow up.

[nwfrugalista in reply to kdali]

thanks kdali—unfortunately my neurosurgeon is not an option as he is out of state (400 miles away), but I will definitely mention the urgent care visit. 💜