Lulu glad to hear you have no had a vertigo attack in 3 months, that's wonderful, do you think the disequilibrium may be due to MAV? that's a symptom of MAV and when my vertigo and MM was under control that is when it was apparent to me I had MAV as well. As you probably know Having MM and MAV is very common. Maybe try avoiding the MAV trigger foods and see if that helps.
Hi Vicki A few years ago someone had suggested that to me as well. I followed the Heal Your Headache book by Dr. David Buchholz - did the elimination diet, kept a journal etc but sadly I didn't experience any relief from it. I was never able to pinpoint any particular foods that seemed to be triggers for me. Bad weather, on the other hand, is a huge problem for me along with stress and lack of sleep. One, two or all three of those things can send my balance reeling. I've learned to live with it though. I just drag my boyfriend (aka cane) along with me and stumble my way through as best I can.
sometimes avoiding food triggers are not enough, if want to take a look at Dr Hains flowchart on how he treats MAV, if diet doesn't work he goes to the next step etc etc
Thanks Lulu. Glad to hear you are doing better as well. I too still have the residual balance problems. I seemed to notice them more when I stopped taking the monolaurin, and when I went down to 1 dose of acyclovir a day. I went back up to 2 a day and started taking the monolaurin, and it's keeping the balance problems at bay. They aren't quite all the way gone, and maybe they never will be. I don't know. I had an appointment with a doctor yesterday on an unrelated matter, and to my surprise, he is also a fellow meniere's disease sufferer. He first become symptomatic back in '92. He's been in burn out for a number of years. But he still has balance problems. Maybe some brains just can't ever adjust to the loss. Or maybe the balance organ in our bad ears is flickering light a half dead light bulb and the brain can't adapt because the information it gets is always changing. Those are my personal theories. I think I can adjust to this life though. It is at least livable, where the way life was before...
burnout does not mean you are symptom free. http://www.menieresinfo.com/prognosis.html#burnout When a patient reaches burnout, the patient has little or no vestibular function left the affected ear or ears, and therefore the patient no longer experiences acute attacks of rotational vertigo, although some dizziness may remain if the vestibular function is not totally destroyed. However, with the lack of vestibular function in the affected ear or ears, balance is a problem and the body may or may not compensate in other ways. Any vestibular function remaining in the unaffected, or less affected, ear may take over and/or the patient may learn to balance through visual cues (with difficulty in darkness). In this situation, many patients benefit greatly from vestibular rehabilitation therapy (VRT).
Thanks for the warm wishes Lulu, glad to hear you've had no vertigo. I was going to say maybe now all you need is some VRT, vestibular rehabilitation therapy, they are a series of exercises of moving the head and eyes that train the brain to keep better balance. A physiotherapist usually gives the exercises. If you mean you feel like you're on a boat or something like that then VRT might not help, I don't know.
Hmm, I do remember you saying that to me before. I have to try the diet I guess. Is tinnitus also a MAV symptom? Since they found above normal pressure in my right ear is that also MAV or maybe I have both, sigh.
yes tinnitus is for MM and MAV Usually MM is low pitched tinnitus and MM is high pitched, but I have MM and MAV and I only have high pitched tinnitus probably due to the fact I do not have hearing loss caused by MM.
some comparisons and overlapping symptoms of MM and MAV The overlapping symptoms of Ménière disease and migraine-associated vertigo include episodic vertigo, sensorineural hearing loss, and tinnitus. Differentiating migraine-associated vertigo from Ménière disease may be difficult because of the overlapping nature of the symptoms of these diseases. However, often the patient’s history offers clues that may help make the diagnosis. When vertigo is present, it may be indistinguishable from the spontaneous vertigo of Ménière disease. One clue that the vertigo is not of the Ménière type is that the vertigo of migraine-associated vertigo may last longer than 24 hours. In fact, a rocking sensation may be a continuous feeling for many weeks to months. In contrast, the vertigo of Ménière disease typically does not last longer than 24 hours. Symptoms that would support the diagnosis of migraine-associated vertigo as opposed to Ménière disease include photophobia, nonprogressive sensorineural hearing loss, vertigo of longer than 24 hours in duration, a long-standing history of motion intolerance, and dizziness occurring only during the menstrual cycle. Childhood benign positional vertigo is strongly related to migraine-related vertigo. Migraine and vestibular disease can coexist. Patients who meet the clinical criteria for Ménière disease should be treated appropriately for Ménière disease, even if a history of migraine headache exists
I just ordered some monolaurin too! It is supposed to get here on the 20th . Is this the same as coconut oil, I have some coconut oil in my cupboard and I am going to go try it, I still have a Dr. Appointment on Wednesday, my FNP thinks I need an MD instead of her, due to low sodium thing going on, I hope he is an easy Dr to talk too and is open to new ideas, I have to go to his office and they will fit me in, then he is leaving for 2 weeks, small towns, gotta love them, he is the same Dr I saw in hospital about the low sodium, so that is a plus
I hope it helps Linda. Coconut oil contains lauric acid when coconut oil is ingested the lauric acid changes into monolaurin in our bodies.
Wow, my brain fog must have let up somewhat, I just realized there were 17 pages on this subject! I ordered the monolaurin, now I think I will also try Johns regime, and if my doctor will prescribe it, the acyclovir, it sounds like it would be okay to do that too, if I am understanding correctly, just want someones agreement or disagreement, is it okay to do all three at the same time? I value people's opinions especially their experience! Am so tired of feeling like this. Also I have cut back on Prozac from 60 to 20 mg as the Dr. told me prozac can also cause low sodium, wondering if I should just get off of it completely, it was hard cutting back dosage, I have been on in for at least 15 years. I took 1/2 of hydroclorothiazide 25 mg yesterday, but felt worse, I am not sure sometimes if I am light headed and wobbly from low sodium or MM. I do see Dr. on Wed. And again I express thankfulness for this site!
Concurrent (at the same time) use of prescribed antiherpetics (acyclovir, others) and my regimen (http://www.zoominternet.net/~kcshop/JOH.pdf) creates no problems. Quite the contrary. Each treatment approach complements the other, with an elevated chance of ultimate success. Antiherpetics suppress herpes virus replication, reducing or eliminating the production of virions, individual virus particles which are ejected from infected cells. They then, in turn, turn on the immune system and cause inflammation of inner ear and nerve tissues. That's what causes the symptoms of Meniere's, the inflammation of tissues from the herpes virus particles. Stop the production and cellular excretion of herpes virions and Meniere's symptoms (in about 85 to 90% of cases) terminate. (Sadly, for a minority of sufferers, herpes viruses apparently are not the root cause, and viral suppression doesn't work. Pinched or mechanically irritated aural nerves or some other mysterious factors are causative.) The advantages of using both prescribed antiherpetics along with my regimen are these. First, and perhaps foremost, the root-cause herpes viruses are suppressed in two, different chemical ways. Antiherpetic drugs disrupt normal herpes virus replication; and so does the lysine of my regimen --- but in a chemically different manner. With a combination of an antiherpetic drug along with lysine, the the herpes viruses are being attacked in two different but complementary ways. But physicians (often with no real clinical or published evidence) are sometimes reluctant to prescribe satisfactory or lengthy doses of antiherpetics. (They are unaware of, or reject the profound clinical findings and recommendations of Dr. Gacek, in the link below.) Lysine, however, is an extremely safe over the counter supplement that can be taken chronically, without interruption. When the antiherpetic prescription runs out, continue with the lysine, to gain or continue adequate herpes virus suppression. But antiherpetic therapy fails to address the symptoms of Meniere's, only the root cause (laudable enough). My regimen understands that most of the symptoms of Meniere's result from the body's reactions --- localized inflammation and ischemia --- to the herpes infection. Normal blood flow through inner ear tissues is restricted, resulting in hydrops (fluid accumulation) and irritation or disruption of inner ear nerves; which causes many of the other symptoms, including the vertigo, where the brain receives aberrant position signals from the inner ear. The other components of my regimen address these problems, by increasing inner ear circulation, etc. (Read in detail the accounts of these in the regimen URL above.) As I've noted before, I have written records of dozens upon dozens (now 261) of regimen user accounts, telling successes and failures. Presently, 229 reports are positive, where Meniere's symptoms have been drastically reduced or completely eliminated. Thirty-two users report that the regimen has been a failure; that few or no symptoms have been controlled or eliminated. That's an 87.74% success rate (very similar to the success rate Dr Gacek reports for users of his protocol.) Those wishing to have their physicians prescribe antiherpetics are advised to read carefully the following posting: http://menieres.org/talk/index.php?topic=557.0 --John of Ohio
I can attest to the truth of this statement. This is exactly what I did. I started the JOH regimen in February of this year and added the acyclovir as soon as I could find a doctor to prescribe it. My last vertigo attack was April 7th. If you want to add another potent component, use some cannabis. It also has anti-viral activity targeting the herpes virus, is a powerful vaso dilator, helping with delivery of things to the inner ear, and will help you deal with the anxiety caused by this disease. It's a really great substitute for control medications prescribed by ENTs for our disease like valium. Natural, non-addictive alternative with more theraputic benefits than valium.
Thanks John, I just got through ordering the supplements from Vital Cost , am excited to get started. I am so tired today after working the last 3 days and I went home early each day!Of course I took an ativan about 3 hours ago for dizziness, and it worked the dizziness, lightheaded went away after a nap, but still feel drained, can't wait to see the Dr. on Wed and hope he is open to the acyclovir, also have monolaurin on the way, and took some coconut oil last night and twice today. I am drinking powerade because of low sodium lately, I think that messes with the low sodium I need to follow, maybe tomorrow, I will just try water.
This is the quote from the e-mail I received from Dr. G. after I wrote to him that I had been taking Lysine, Lemon Bioflavonoids, Vinpocetine and Gingko beside antiherpetic drug. "The other meds are OK to take. It is just that they may cover the effects of the acyclovir which is the important thing here." I believe in JOH regimen, of course, and will pursue it. Meanwhile I introduced Vitamin C and Vitamin E. But it seems that the doctor is unaware of it?
IMO most medical doctors are not well versed in herbs or supplements. I have found its best to ask a pharmacist about herbs and supplement or a holistic practitioner or a nutrionist.
I would interpret that to meaning that with the other supplements added that there would be a sure way of knowing what is working. As he is very focused on the anti-viral piece it makes sense to me that he would need to determine efficacy with his regime only.