Hello! I'm newly diagnosed with secondary endolymphatic hydrops. Waiting to get in to see an otoneurologist in November. GAH! I have so many questions, but I think the symptom that is the worst for me is spacey-ness. I just feel weird and disconnected from the world. And SO tired. Is this common for this disease? How do you deal with it? With much gratitude,
Yep, me too. Brain fog was noticeable until I started on the JOH (John of Ohio) regimen. Been on it for 3 months. Other symptoms haven't improved much but the brain fog definitely has!
Vinpocetine is the component of the John of Ohio Regimen (http://www.zoominternet.net/~kcshop/JOH.pdf) that gives the relief from brain fog. (Relief from other symptoms can take longer than 3 months to appear. Persist.) --John of Ohio
Doc did put me on Valium. Makes me so spacey, I only take it as a last resort. I will have to read up on Vinpocetine. Tried edibles and (I live in OR, so it's legal), but I didn't get any relief. Just didn't care as much! Thanks!
I used to have it, too. It ended when I started the Valacyclovir. That's crazy about November! Keep calling.
I just found this thread searching about confusion. I periodically have severe dizzy episodes which are accompanied by confused thinking, making lots of mistakes and forgetting to do things. My Neurologist mentioned Menieres in passing during our last visit, which is the first time a doctor has mentioned Menieres. I suffer from Vestibular Migraines, so I had always associated this with the Migraines. Today is one of those days. I’ve seen references to the JOH treatment but haven’t searched it out. Are the drugs on John’s treatment readily available? Do the cost a bunch? I’m retired and have to watch my money.
I’m having another bad day today. I read this post that I’m replying to and thought, “Wow, someone else with the exact same issues that I have.” I hit the reply button and then saw my name and realized it was my own post. I hate it when I get this confused.
Hi! The first to encourage you because the confusion usually happens over the months, I think it is because the brain takes a long time to adapt to the new stimuli it receives. The thing about getting confused and forgetting things Are you having anxiety, depression, nerves, etc. because of your illness? When I started my Meniere I had anxiety attacks every day and hardly slept more than 4 hours a day for three or four months. In this period I forgot things and was confused, but it is a symptom of anxiety or depression and poor sleep. About the JOH regime, you can find it here: JOH (John of Ohio) Regimen for Meniere's Disease details JOH has also written that he would add a high dose of vitamin D3 (5000IU a day at least). In any case, not all elements of JOH regimen are necessary for long-term improvement if you cannot buy everything. The essential thing is lysine, a good multivitamin and also add a strong vitamin C and D3 even though they are included in the multivitamin. And JOH has never commented on this, but I would add sea pine extract as it is a powerful antioxidant with bioflavonoids that has a clinical trial where it helped with dizziness at 90% and the rest of symptoms at 40-50%. The rest of the JOH compounds can help with symptoms like brain fog or tinnitus, but they are not essential.
Im not having anxiety, depression, nerves or stress. I’ve come to terms with my loss of hearing, and I’m working on the dizziness. It’s the brain fog that is concerning. I’ve always had a sharp mind and could remember the smallest details. Now, I’m doing good to remember what day it is, or do simple math. My first loss of cognitive skills was following heart surgery where I went on bypass. Now I’d be happy to just get back to that point.