Does anyone have headaches? I am on JOH, B5&6, and Acylovor for a MM diagnosis of August 2018. Been on the above regime since Feb 2019. I am seeing improvement, however, I have headaches every day. does anyone have this? My symptoms are going away except the tinnitus which now is every other day. I've never had vertigo just facial fullness and tinnitus and now headaches. I am puzzled. thanks to all
Hi Emily, I have menieres and migraine associated vertigo. (MAV) I was not diagnosed with MAV until a few years after menieres. Actually I do not think I had MAV in the beginning. I follow the JOH and was taking high doses of vitamin b. I learned from a neurologist that high doses of vitamin b6 can set off vestibular migraines. I think this is what set it off for me. He also recommended to take between 200 mg and 400 mg a day of vitamin B2 to help with migraines. If you have headache issues you should take your b vitamins separately not in a complex to control the dosage. For about a year the B2 really helped me, but in the past few months I can not seem to control the MAV. Seems like the weather is really affecting me. If you are not familiar with Migraine associated vertigo, you should look into getting the $11 book on Amazon titled Heal Your Headache By David Buchholz. Best to you. Bonnie
Thank you for this information. I did get the book and am reading it. I watch everything I eat. Especially sugar chocolate and alcohol. I am careful about salt. I will reevaluate my B vitamins, I take B5 125 mg & 6 100mg before breakfast. I'll look into B2. I am baffled about my symptoms, no vertigo however tinnitus every other day and daily headaches. And the left side of my face feels funny, hard to explain what the feeling is. I live in Fl and its been raining almost every day so maybe the weather is a factor. Thank you for the input. I hope you feel good today.
Oh good, you have the book. There is a section on trigeminal neuralgia and atypical face pain. If you find the section and read through this sentence stands out in regards to your face...and I directly quote... The message here is: if facial pain is not characteristic of trigeminal neuralgia and does not respond to adequate treatment for it, and there is not a clear explanation such as acute bacterial sinusitis or an abcessed tooth, the CAUSE is probably MIGRAINE. Also there is another part in the book in which it talks about numbness in face can be migraine related. Not sure if this applies, but just in case thought I should share. Bonnie
Following! Glad you are seeing improvement. I am still suffering from ear fullness, mild tinnitus that comes and goes, and I have pressure in my head at times. Have you had that? My Neurotologist diagnosed me with a migraine variant that manifests in the ears, but I am somewhat skeptical! I do get headaches, and I have a history of migraines. I think because of that history is why he diagnosed me with a migraine variant. I still believe my ENT was correct with his diagnosis of cochlear Hydrops though. I am still taking Valtrex 2000mg a day (ENT prescribed) and taking the Nortriptyline that the Neurotologist prescribed. I may be slowly getting better, but I still am having better and not so good days with it. I find weather to be my biggest trigger! I am so sorry! I have become so self absorbed with this maddening ear fullness that I have ended up talking about me when I really wanted just to ask you if you had a history of migraines. If so, you might want to look up the Association of Migraine Disorders and be sure to read the part about how it can affect our ears. I still have a hard time accepting this diagnosis for me when my problem started out as a middle ear infection, but praying the Neurotologist is correct! Hope you feel better!
Thank you, this sounds like me. I have a doc appointment with my GP who is really good and plan on pursuing this with him. I really appreciate your feedback. Again I hope you are doing good today, it’s a day by day thing. Yesterday my tinnitus was very loud today it’s veryvery low. Headache is in the base of my neck. Mild facial effect. Go figure ♀️
Hi, you sound a lot like me in many ways. I have not had migraines before. But am going to pursue this with my GP. He’s really good. I’ll go on the disorder website. I’m glad to hear more of your story. We ALLare just so overwhelmed with this disease. It truly is absorbing . I try to focus on I am seeing improvements & not get discouraged. I able to be functional and that is a huge step forward. Thank you for your help today and you have a wonderful good day!!! Keep on moving forward
I have had headpressure only on my left side, everyhting with me is on my left side. And I think the weather has a effect on me as well.
Are these headaches new? That’s good you’ll be letting your doctor know, just to make sure. Did they headaches start after you started the supplements and vitamins?
Ive had headaches off and on like most people, nothing what I would consider migraine like in the past. They started consistently in late May. I started antiviral and supplements Feb. 2019
I had some horrible migraines, thought they were headaches about 10 years ago. I had to go to a dark room and lie down, then sometimes I had vertigo on top of the migraine - I assumed they were brought on by the vertigo. Long story short, I started taking 400 Mg of Magnesium (on Sun, Tue, Thr and Sat) and quite honestly I have not had a migraine since.
Hi Steven, Welcome to the site. Not sure where you are in this journey of menieres or mav, but I hope you can find the answer or support that you may be looking for. There are a lot of different members that check in that have a wealth of knowledge, so if you have anything specific you would like answered, start your own thread. You will get more hits and your replies will be easier to find. Best to you. Bonnie
I got one right now....dealing with a 13 year old who wants to eat ice cream rather than go to bed. It’s 10:50 at night and this idiot is going asking around the kitchen like it’s high noon.