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Vertigo, Ent, And Where We Go From Here


DizzyGirls

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My daughters have finished a grueling two weeks of doctoring and testing: a two day trip to Stanford (dr. visit and TTT), a couple of actual 'in town' appointments and then our last, the ENT at UCSF. We went to the ENT to see what to do about my oldest daughter's petrous cyst and the youngest appeared to be missing part of her inner ear anatomy. So, the cyst you don't do anything about, and the lack of anatomy, well, he thinks it might be there, just missed in the 'slice' of MRI. She needs a CT scan just to make sure it's there. The doctor asked if anyone had recommended a CT and wished they would have before we made the trip in. Seriously, the one time I decide I was too tired to question anyone regarding that fact. I thought, 'oh, the MRI must have shown everything, how nice'. Ok, always go with your gut. Even when it's tired. So, it sounds like it will be nothing to worry about, we hope.

Those results were good until.......the term 'vertigo' reared it's ugly head. I didn't really want his opinion on it, but it was there in vivid form in my oldest daughter. Poor thing could hardly stand up straight. These car rides are really doing her in. BUT, the doctor was preoccupied with my youngest, whose vertigo has improved a lot from where she was the last time she was at this office (feeding tube, severe vertigo). He harped for the longest time on drinking caffeine and how it was not helping her and only making things worse. And, of course, every time I said something I was wrong. Finally, he left. I hate to tell him, but the youngest one drinks more caffeine and she is doing better than the one that drinks less. AND, she isn't the one with the migraines!

What it comes down to, and what I get really frustrated at, is the fact that he hadn't taken their Ehler's Danlos into consideration along with their POTS. My girls actually do well with anything that will constrict their blood vessels, whether it be caffeine or something else. So now, we wait for doc at Stanford to write back and hope for some good meds!

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So, finally got a response from our doctor at Stanford and he is prescribing the girls verapamil. He said it should help their POTS, migraines and vertigo. Hope so! If anybody has any useful information regarding verapamil, side affects, etc. would you mind chiming in? Thank you!

Katybug, noticed in your signature line that you take verapamil. How has it helped you? I'm going to go to drugs.com and bump up their current meds with the verapamil to make for certain there are no interactions.

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I've been on verapamil twice. The first time was as a migraine preventative when my migraines weren't nearly as bad as they are now. That worked for me for a couple of years.

I am on it now because I can't take beta blockers due to my mcas. It was helping my heart rate although you need to monitor bp because it is really a bp med. It has not dropped my bp which is odd because I have a tendency for low bp. Also, it is currently not helping but something has changed for me and we're trying to figure out what (because frankly none of my meds are helping adequately.)

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Hey DizzyGirls, I am currently on verapamil on a pretty low dose. I take it for chest pressure which it helps a lot, it is also a migraine preventative which is good for me but I am also on another daily med that works better for my migraines. Other than the chest pressure I don't really notice any other effects good or bad with my verapamil dosage. I get vertigo here and there; sometimes migraine related sometimes POTS related, I wouldn't say any of my meds particularly affect it, though they don't make it worse either. For me personally verapamil has been a pretty stable drug in that I don't feel worse or different when taking it, but it does help with my chest pressure, so I plan on being on it for the foreseeable future.

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