New here, need advice

Hi I am new to this forum. I have been suffering from vertigo since 2008. The episodes seem to be stress related. I started off with the internal med doc, then ENT, then finally to neurology and dx with migraine with vertigo.
The episodes are infrequent maybe two per year but they are awful putting me in bed for 4-5 days. Can’t eat walk work nothing. Then I am left scared and nervous and shaky for weeks.
My first neuro put me on Zoloft as an off label preventative med. and on migranal nasal spray as an abortive med. limited success .
This spring I got a new neuro (other retired). He took me off Zoloft and put me on verapamil. To take when it occurs.
So now I am four days in bed missed thanksgiving freaking out about missing work feeling scared and very sorry for myself.
Looking for advice and support.
Thank you.

Hi,
I am sorry you are having such a hard time and missed Thanksgiving. I hope you are doing better now. I am several years into this and still haven’t gotten a concise diagnosis. First it was basilar migraine then inner ear dysfunction, then it was Lyme disease and now it’s back to migraine. Over the years I’ve learned that it’s okay to feel sorry for yourself. Take time to cry and then brush it off and get back up. None of us know how long each of our battles are going to be, but we won’t find out unless we are up fighting it. Once you start feeling better, get back up in that battle and hopefully soon it will be over and you will feeling 100% again.

Good luck to you and hugs!!

Thank you so much for you kind reply Candi. I am in a very low place this time, and am wondering how to pull myself out of this. I know that this episode will pass, but for right now while in the midst of it I will feel poorly. Thank you again for your response.

Hey there,

I too get these symptoms. They are so terrible, I agree. Mine started really suddenly a little less than 3 years ago. My situation has been helped by low doses of nortriptyline and topiramate - you might want to try either of those drugs or in combination - see a neurologist who can prescribe you one or the other or both.

I don’t want to have to take meds if I don’t have to (I am young and don’t want to take them forever esp. during childbearing age) so I am looking for dietary triggers too. I think for me, chocolate, nuts, dairy, citric acid, MSG, soy and gluten may all be triggers, but it’s really hard for me to know for sure.

Nuts, red wine, too much caffeine, MSG, and yogurt seem to clearly correspond with increased head pressure for me though, which then makes me dizzy.

Is there something that you are eating that triggers your symptoms? Sometimes it progresses to a full migraine, that is excruciating, but usually it’s just a feeling of being off balance. I hope you feel better!!! xx

P.S. Do you take low dose aspirin? I have to for a blood clotting disorder and I was curious if you do too, since I’m trying to figure out triggers.

Hi Liv85,
Thank you for your response. I am sorry that you experience these too.
I do not take low dose aspirin.
I rarely ever get headaches.
Take care,
2dox

Hey 2dox,

Thanks very much for your response. I rarely get full blown headaches too - it requires a ton of fluorescent light work exposure for me to have that happen (basically after a full day conference situation with backlighting on screens too). Mostly it’s just chronic feeling of foggy-headedness and disequilibrium, that can get worse depending on stimuli.

Well, that’s reassuring about the aspirin I guess! I think nortriptyline and topiramate have both been helpful drugs but particularly in combination at low doses. Have you tried either drug? This study below mentions the combo as being useful for migraine (and perhaps MAV sufferers who aren’t helped enough by either drug alone) although it sounds like if you get to a high enough dosage with one or the other, it does help a great deal.

I have trouble tolerating the side effects of meds so that’s why I think the lower dosages of both drugs in combo seem to help me. But I’m still trying to figure out what works for me.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3253150/

Hope you feel better soon!

Thanks again Liv85.
I am taking 40 mg verapamil either a half or whole tablet at bedtime but only if in an episode and then for three days following. This does nothing for prevention. I have s message out to my neuro asking about s change or increase in meds.

I think because my episodes are infrequent I am not on a daily/preventative med. I prefer not to take meds if I don’t have to.

I completely understand you not wanting to be on meds during childbearing years, too risky.

Best to you.

2dox

2dox - Having suffered with vertigo almost constantly for close to 2 years, I have tried everything. Various prescription drugs, herbal remedies, acupuncture, and physical therapy, ent testing (they told me I had damage in my left ear that was causing my vertigo), a specialist at Mass Eye and Ear told me I had MAV. I have tried everything to both diagnose and ultimately cure my vertigo. As a last resort I went to a chiropractor and after an exam by her and some xrays, I discovered my spine was totally out of whack. I was leaning to the left and instead of my spine being curved it was almost totally straight. Almost 8 weeks now going to her first 3 times a week and now twice a week - I am 80% cured of my vertigo. I can now go hours and sometimes most of the day without it bothering me. I would recommend anyone suffering with this awful problem to exhaust every avenue - not only the ones involving medication to find out what is causing their problem.