Hi. I'm new here...the Dr. said I had this...condition, about 10 days ago then never said more. I was left to google, which scared the tar out of me but then I found you guys. *thank you, thank you, thank you! I'm still not convinced that this whole mess isn't just a form of migraine. I'll try not to be too long winded, there's so much...but this is me -I'd like to find someone with similar symptoms and stalk your posts. . In my pre-life I was awesome now I'm: Excruciating headaches -come and go Stuffy head - always Queasy - at times Dizzy on my worst days -thankfully not vertigo Back of head and neck soreness - seems to follow headache Heart palpitations Odd chills! Hearing loss that comes and goes...both ears Ringing in ears - always RUSHING in ears - only on dizzy days It seems there are a lot of variables to this condition but judging by some of my reading, I may be lucky to have an ENT that prescribed me antivirals. Now, as I'm reading through posts, I have even more questions. isn't there a test to tell is if we have a virus? Shouldn't we have a fever? *and what's wrong with MYLAN brand Valacyclovir? Can I take L-Lysine at the same time? I doubt the doc would know. I'll stop now. ~m (melanie) Formerly known as mcoffeesnob...I was told not to drink it so...
Welcome Melanie. Others will do better at answering some of your questions as I am pretty much a Newb myself. I'll ask a question if I may. Have you experienced any neck injury in your past? I ask as your comments about neck pain, back of the head and severe headaches. Neck pain, back of the head headaches are part of my journey. I have experienced various upper cervical injuries in my past that have me in PT due to the condition of the muscles in my upper cervical area which run up and over my head. Upper cervical misalignment is one of the conditions that can cause MM like symptoms. I am one of the folks who have experienced relief using the JOH supplement routine which Lysine is an active component. While I won't make any claims about recovery, my symptoms are a squeak compared to what they were prior to reducing sodium and starting JOH late last year. The palpitations you mention is a new one for me to read about on this board. Could these be from anxiety or another condition?? What did your Dr. say about the palpitations? I have not yet start the AV regimen but others here have. Quite a number of folks have experienced relief if not outright remission. The key to this ailment is to start exploring the triggers for your condition. My best advice is to research MM and apply your past life and conditions to see if there is a cross connection. You need to take control as many ENT's have a limited canned regimen. Don't presume everything you are experiencing is part of the same condition. As I draw close to 60, I find I have a handful of issues to manage with only some of which may be related. You will find encouragement here as well as info. We are all in this together. K
Welcome aboard. You should get an appt with a neurOTOlogist and make sure the diagnosis is correct. Then you can start thinking about treatments, etc.
Thank you so much. I'm actually lying in bed now, not able to sleep. It's a good day but I need to learn to grab those and run instead of ruminating. Not sure how to do that just yet. YES! I have neck injuries. I have been to a chiropractor for years to treat my migraines C1 and C2 get out if whack a lot...but now I'm wondering if the chiropractor is part of my problems. Maybe he messed me up. I have another link too with a virus. I do get cold sores on my mouth, but not often. I've tested positive for that but can it jump to my ears!? Yikes. I do think I weakened my body by doing intermittent fasting...it felt good, but now I wonder if I messed myself up. I do thank you for listening and replying. The advice is good. I'm so grateful. Someday, when I can breathe a bit, I'll try to help others. ~m
If you decide to try antivirals, it should be easy to get a script since you've been tested for herpes already.
Some optional reading while you pursue your current regimen. http://ww1.prweb.com/prfiles/2010/11/01/4183644/menieres1.pdf C1 and C2 are key vertebrae in which misalignment or abuse can cause issues with the Cochlear and Vestibular nerves. Yes, this can cause MM symptoms. Like you, I have upper cervical issues and this is reason I am currently in PT twice each week since the MM reared it's ugly self. Like you, I was under the care of a neck cracker for a year before I quit four years ago. Bottom line is it never helped relieve my symptoms. Only recently have I heard of the damage that can be done with some methods of adjustment. I'm not against Chiro, but I am for doing what works, and try the obvious 1st. I may end up trying a NUCCA Chiro in the near future as they specialize in C1/C2 and use a gentler adjustment method. It all depends on how the PT goes. Whatever path of treatment you elect, stay consistent. Don't expect rapid positive change. It seems it takes months for most folks. Be happy with baby steps. My symptoms have improved remarkably since I found this place and decided to try the JOH regimen. The symptoms are still there but are in the shadows for now. BOL and stay strong.
Migraine is what jumped into my mind. I dont have Migraine Associate Vertigo but a number of people here do. I have heard the book 'Heal Your Headache' recommended. I know for a fact foods can cause migraine. Raw onions cause it in me.
+1 for the Buchholz book. Even if you don’t have MAV (either stand alone, or in conjunction with Meniere’s) the explanation of triggers and tipping points is relevant to Meniere’s and worth the price of admission alone.