I’m a little over 2 weeks in on the b5/b6 regiment. My tinnitus has been gradually decreasing...it’s pretty quiet now and I’ve had no vertigo attacks since starting. Here’s what I still do have, general dizziness, floating feelings on and off which I’ve read classified as “central dizziness”, it comes with pressure in the forehead due to circulatory issues, I’m sure inflammation of the brain having a difficult time reading balance cues. This effects me mostly if I’m tired or run down. Also, my worse ear still can’t regulate pressure and pops sometimes as random worsening my tinnitus until I pop it again. Anyone else have either of these?
… Low salt diet by all means, yes. I will always go spinning if I take too much sodium in any form - either in one meal or over the course of 24-36 hours... bread, pasta, and pretty much anything that has been prepared outside of my own kitchen … I am cutting way back on wheat and anything with wheat in it this week too. I am quite looking forward to this - any relief from the 12+ years of constant insanity of screaming tinnitus will be a great blessing to me... I can easily see what drove Van Gogh to carve off his own ear... Will post results as they come in
Update: My vertigo was settling down over the last 3 weeks. My disequilibrium/ mal de debarquement has still been challenging. I started the B6/B5 2 weeks ago, in the form of a multiB that contains 100 mg of B6 and 300 mg of B5. My doctor put me on Diamox (acetozolamide) 125 mg 2x per day, started it 1 week ago. My tinnitus is still really loud. We have a Chinook wind blowing today, and I’ve had 2 Vertigo attacks this morning. I’m glad for bennyhill that he is well, and that he shared his positive experience. Unfortunately it doesn’t look like it, or any of the other pills, do it for me. But I’ll stay on them for now, in hopes that they minimize my suffering while I wait for a surgical procedure- hopefully that will be my ‘cure’, like bulldogs experienced.
Anne I am so sorry to hear you are suffering a lot. I never found any relief in meds (Monolaurin though changed the frequency of attacks from 1-3 per week to 1 per month) That’s why I opted out for a surgical procedure. At the end of the day it doesn’t matter what helps as long as it DOES help. Have you and you doctor decided on the procedure you are going to go ahead with ? I keep my fingers crossed for you Anne!
I don't know what taking 300mg of B5 does. I do know that 100mg B6 and 125mg B5 plus a low salt diet works. After two weeks you should be stable as to dizziness and vertigo goes. You should also experience a diminished Tinitus, expecting it to be unnoticeable except in very quiet times after a month. Before giving up, reduce the B5 to 125mg.
After two weeks you should be experiencing decreasing Tinitus and vertigo attacks should cease as you state. This is what B5/B6 does for you. However, your general dizziness should be also be gone. Menieres is a flooding of the inner ear interfering with your balance and hearing. It does not affect the outer ear or pressure on the forehead. Popping your ear clears the pressure in the outer ear affecting the ear drum, similar to flying at high altitude. Menieres does not cause this, it only affects the inner ear. I think you have other issues and should continue to seek medical help in finding the cause. The B5/B6 will continue to take care of your Tinitus and vertigo.
Tinitus declining is what B5/B6 is supposed to do as I stated in my original post. It takes about a month for it to decline to where you hardly notice it. I don't take any other medications for my Menieres. As long as you maintain a low salt diet, dizziness and vertigo will be a thing of the past as well.
Marta I saw dr house in LA who offered gent, sac surgery (I’m not keen/convinced on that one) or laby but we both agreed the recovery would be easier for me to get it done home in Calgary. But I don’t see see the Neurovestibular Clinic here until May 1. Bennyhill If I try your exact dosing I’ll let you know.
Anne, after reading the recent posts from Mac (Hough Ear Institute) and jkc (Sound Pharmaceuticals) I wondered whether there would be a difference between laby and gent for future cell regeneration medications. As I understand it, a laby is a sort of physical reaming out of the inner ear, whereas gent is medically killing off the hair cells. If I were facing the question of laby/gent again, it's something I would want to ask about. And I would be interested to know if you get an answer about whether these new medical treatments might possibly restore hearing post-laby. I am so grateful for having had my laby and freeing myself from a life of fear, but I still grieve the hearing loss (from Meniere's prior to the laby) because of the social isolation that comes with it. It would be wonderful to have hearing restored. Does having a laby rule out the medical treatments under development?
Hi all, I started the B5/6 regime on Sat. I have been on JOH regime and anitviral since Feb 1st. I have been seeing good results in decreases of my symptoms on the JOH. Since Sat. and adding the B5& 6 my tinnitus has increased and gotten very loud. Is this normal? (i say with a smile, what is normal these days) I'm not stopping anything just curious?
Doesn't matter. I take them after eating, with my morning fruit juice, but on days that I fast, usually for blooded tests, I take them with a mouthful of water. Food is not necessary.
Update: I’m5 days short of a month on b5/b6; and about 2 weeks ago I added in 200mg a day of magnesium, and a b12 supplement. This afternoon, my ears returned to almost normal for about 4 hours, aside from quiet tinnitus, even hearing I thought was gone forever returned. After eating dinner, the tinnitus has begun to get louder again, mine goes in and out with my heart beat so I can tell there is some inflammation going on again BUT my hearing is still back. I’m gonna up the magnesium I think. I’m still vertigo free and dizziness has improved still. Feeling really hopeful!
Are you maintaining a low salt intake? No added salt to food or cooking? On B5/B6, your Tinitus should not return if your salt intake is very low. Eating salt increases sodium in the blood affecting kidney function. See: www.bloodpressureuk.org/microsites/salt/Home/Whysaltisbad/Saltseffects This leads to higher blood pressure and may be why your Tinitus varies with heart beat. And may be why your Tinitus returned after eating dinner. As expected your vertigo and dizziness should be gone by now and should not come back.
My dinner was low salt, only natural occurring, so maybe 15-30mg. I made a shake before which had maybe 140mg in the flax milk but I’m not so sure it was salt. I’ve always maintained low salt, 500-1000mg a day but I’ve mever seen a direct correlation in my case. When my tinnitus increased I also got very stuffed up and congested and an itchy throat, I think I have an allergy to something that causes some of my problems. I’m just not sure if it’s in the food or environment..
I am on the Pantothenic Acid/B6 for 23 days now, weirdly I also added magnesium (2 x 400mg chelated magnesium) recently. Tinnitus is pretty much gone completely, I really have to concentrate to notice it and my hearing seems really good (to me, haven't had a test).