From Solari (Ray)
My MegaVitamin C Experiment as Anti-Viral Experiment
From Carnyard 9/30/10
I have had MM symptoms since 2006. My first symptoms were fluctuating hearing loss, tinnitus, and fullness in my left ear. In 2009, I had my first vertigo attack during a business meeting. This was followed by chronic dizziness and nausea. My vertigo attack duration ranged from less than sixty seconds to several hours accompanied by vomiting. Attack frequency between my first attack and prior to starting any treatment ranged from once a day to once every two weeks. I never went longer than two weeks without at least one attack. I had several tests to rule out other causes. I was diagnosed with Meier’s Disease in May 2009. I received a second opinion with the same diagnosis of Meniere's Disease in June 2009. I received a third opinion with the same diagnosis as Meniere's disease in August 2009.
Treatment History and results prior to starting High Dose Vitamin C:
I have tried the following treatments since I started having symptoms: Diuretics and low-salt diet (I was already on a diuretic and low-salt diet for hypertension for over a year when I started having MM symptoms. They did nothing to prevent my symptoms or reduce them. Also of note: I saw three ENTs, one neurologist, two neuroTogists, and the predominant inner ear/balance specialist in New Jersey. Did not have a firm diagnosis for 4 years and spent thousands of dollars); Steroids (No change in symptoms); histamines (made symptoms worse. Doctor took me off the histamines after 2 weeks); JOH regimen (No vertigo, slight dizziness but manageable, slight reduction in fullness and tinnitus for six months. Caught the flu earlier this year and symptoms returned. Have continued on regimen); Chiropractic (significantly reduced duration and frequency of vertigo attacks, no change in fullness/hearing/tinnitus); Acyclovir (symptom-free after 6 days and maintained for 1 month. Caught a cold and symptoms returned); Note: I made a personal choice not to have any type of destructive vestibular procedure i.e. gent injections or surgery. I have no experience pro or con with this line of treatment.
Rationale for experimenting with High Dose Vitamin C
As stated above I caught a cold (or virus) while I was on a business trip in San Diego. After being symptom-free for one month, my Meniere's symptoms came back after the cold hit me. I had the same experience last winter after being symptom-free for 6 months on the JOH regimen. I increased my Acyclovir dosage back to 800mg 3x's per day. I was definitely concerned because a) I had been taking 2000mg of Vitamin C for almost 2 years and I was still catching these colds b) I had cold symptoms for about 2 weeks with no improvement. I read Solari's (Ray) post on his success with high dose Vitamin C. I did my own research and decided to proceed. My intention was to experiment with high dose Vitamin C and continue to take my Acyclovir Rx at the high doses recommended by Dr. Gacek. After consulting my family doctor, I decided to stop taking Acyclovir until I knew how the high doses of Vitamin C would affect my system. At the time, my hope was that Vitamin C would give me enough of an immune boost to resume my Acyclovir and increase its effectiveness.
Personal Experience working up to Bowel Tolerance:
My original bowel tolerance level was 22,000mg. I started at 2,000mg adding 1,000-2,000mg per day. The day I started I had a 30 minute episode of rotational vertigo, imbalance, fullness, and hearing loss. I was also nursing the cold or flu mentioned above. When I reached 5,000mg, the cold symptoms went away along with the dizziness. At 8,000mg, the fullness went away and my hearing came back about 80%. Tinnitus was approx. 4 out of 10 with 10 being the worst. At 10,000mg, my hearing came back 90%, tinnitus 2 out of 10. Stayed that way until 19,000mg, fullness came back, hearing went significantly down, and I had a 60 second vertigo attack followed by dizziness for about an hour. The next day at 20,000mg, dizziness disappeared. No more vertigo. Reached bowel tolerance @ 22,000mg. The next day, I did 22,000mg again to make sure I had truly reached bowel tolerance. I did. Fullness disappeared; hearing came back to 90% but tinnitus increased to about 7 out of 10. No dizziness or vertigo. The next day, I scaled back to 21,000mg. No bowel tolerance. Stayed at 21,000mg. After two, maybe two and a half days, tinnitus virtually disappeared, maybe 1 out of 10 if I really concentrated on trying to hear it. After several weeks at this level with no return in symptoms, my bowel tolerance level fell drastically to 15,000mg. I consulted a Vitamin C expert that I connected with during my journey and he advised that the drop was normal and signaled that I probably had another toxin (possibly the cold I referenced) still in my system even though the most obvious symptoms were not prevalent. This was now eradicated resulting in less Vitamin C required by my system. This drop did not affect the improvement in my MM symptoms in any adverse way.
I have maintained the same success level with practically no MM symptoms as stated above. I continue to take high doses of Vitamin C just below my current bowel tolerance level. I will have another audiogram after I have maintained that level for 6 months.
From Debbie D 9/28/10
So.....I was asked to post some more info on my Vitamin C experience. I know some of you don't care or are skeptics, so feel free to pass on reading. I will try to be as brief as I can so anyone can feel free to direct message me with questions. I plan to stay on the site a while longer to answer any follow up questions.
First of all, let me say that I don't know if I am doing this "right" so am NOT saying this is the correct way. I think anyone interested in the Vitamin C experiment should ready Solari's posts. I am just telling you what I did.
I begin in late June taking the c-1000 powder from Vitamin Shoppe. I mixed 1000mg with water, three times a day. After no ill results, I increased it by 1000/day and continued to do that (sometimes increasing by 2000/day) until I reached bowel tolerance. For me that meant, loose bowels. I didn't spend all day in the bathroom and never had nausea, just had to get there pretty quickly. I worked all the time through this and it was no big deal. I had no negative affects at all from the Vitamin C. I should mention that from what I have read, it is important to spread out the Vitamin C. Because I take it in bottles of water, I am pretty much drinking it throughout the day. That may contribute to my success. I now spread the dosage out in 4 bottles of water. I think the dosage is not important because everyone is different but it is more than 10,000mg and less than 20000.
Within 2 weeks I felt a difference. First the dizziness stopped, no more vertigo and my hearing started to improve. Within a couple of months, the tinnitus was gone. I have done nothing different but the vitamin C. I have continued the JOH regimen which brought me some relief but not to this extent. I truly do not feel any symptoms of Meniere's. I still wear hearing aids and probably always will but I have had Meniere's for 15 years and I am sure some permanent hearing loss has occurred. But my hearing is much much better. With the hearing aids, I now live like most normal folks.
So, that's my story, folks and I'm sticking to it.
Updated by Debbie D 10/7/10
I had slight dizziness twice in the past week, both on days where the barometric pressure was acting up. Otherwise, I continue to be dizzy-free and my hearing is great. Still using hearing aids of course, but hear about anything the average person hears and I can even hear on my lousy office phone without the speaker. I will go back to the audiologist next month and look forward to a new hearing test. Life is still terrific in my mega-vitamin C world! Smiley
From CGR 09/30/10
My [still short] story:
Disclaimer: Due to brain fog, some of this may not be entirely accurate (e.g. dates). I should have kept a diary.
I had sudden (overnight) single-sided deafness in the left ear in 2005. No known cause. Some dizziness for a few months after that, but nothing serious so I didn't worry about it. About the same time, tinnitus started, but at low levels (crickets chirping, occasional notes).
Last year in the Spring, I had another bout of morning dizzies, but they went away after two months and I didn't think much about them.
This past late Spring, I started having the same. Again, nothing serious, so I ignored it for a few months, but in July, it started getting bad and more chronic (no longer limited to mornings), so I went to an ENT.
MRI, CTScans, ENG, etc. No dx.
I tend to lose track of time around here because I entered a period of 3 weeks where it was a living hell (although admittedly nothing like what some folks around here have experienced, so maybe I’m a sissy). I couldn't drive, couldn't work, could barely walk with a cane, and didn't go outside for days at a time. Tullio's was awful. Tinnitus was driving me nuts. I was taking 3-4 mg of Ativan just to maintain sanity, but it was not relieving. I could not sleep through the night without taking another Ativan.
Hooked up with John via email and started on full JOH August 26. I also started taking 6000 mg of D3 and cut back on sodium. I also started wearing ear plugs for the Tullio's sometime in there. Started feeling a bit better within a week or so, but mostly just a more positive mood. Of course, I realize that JOH takes months to fully kick in.
Started Hi-C when I read about Carnyard's experience. Got to BT at 22k (rushed it a bit; others go up more slowly I believe). Cut back to 20k for a few days. Now it seems that my BT is around 16k, so I’m taking 15k a day.
Ok, so where am I today? I'm still new at this, and this is ongoing, but I’ve already gotten more relief than I hoped for. I can now drive, teach my classes without worry, feel less anxiety, have cut back on the ativan (down to 1.5 mg day), and my tinnitus is not bothering me (although it's not lessened in intensity). I now feel like I can safely take myself through a productive day without having to bail on my duties. The last two nights, I’ve had tremendous sleep for 10+ hours each night. I woke up feeling incredibly rested. And both nights, didn't have to take an ativan halfway through the night. I also was able to sleep without ear plugs for the first time last night. I'm not 100%, but it's a hella lot better than it was and it's still early.
Take it for what it's worth. If it's a placebo effect, then God Bless Placebo.
Modification: My current regimen is as follows:
D3 - 4000
GABA - 300
C - 15,000
Selenium - 200
Mag Citrate - 340 (but temp halted due to stomach issues)
Ativan - 1.5 mg (and dropping)
CGR Updated on 10/03/10
Update on my progress:
The past two days I had been wearing my earplug less and less (for the Tullio's). Today is the first day that I have not worn it at all yet. No dizzy symptoms at all. The noises are still a bit annoying, but that's far better than the crashing sounds I was hearing before.
My tinnitus is not annoying me at all anymore. In fact, as I am writing this, I had to think about it to see if the sound was still there. It is, but not very loud.
I'm still at 15,000 mg per day of C.
CGR updated on 10/05/10
I had a hearing test done today because i felt like my hearing in my good ear was getting better. I used to have 30-40 db loss in many of the higher frequencies from awhile back. Today, the worst loss was 10 db in two frequencies (the rest were 0 loss), which is well above normal.
I dunno what to think...
From sirlanc 10/02/10
My Vitamin C story.
I have not had any vertigo since Nov 09 and living a normal life other then 60db hearing loss in one ear and slight tinnitus. Vertigo stopped right after starting with Calcium Channel Blockers. Initially Flunarizine which is not an FDA approved drug and after three months Verapamil an FDA approved drug which also treats my BP.
That said I have had some negligible balance and dizziness issues. I used have some off days when I was a little unstable and was felling a little sick to my stomach. If I were to stand up and tilt my head 90 degrees to the side of my bad ear I used to have about 5 seconds of dizziness and then it would stop. Finally I am a wine lover and when I would drink more than two glasses of wine I would become unstable. These symptoms were consistent coming about once or twice a week and while they did not affect my life at all, they were a constant reminder of MD.
All these months I was taking 3g of Vitamin C per day which is the dosage of my multivitamin, JOH and Verapamil. A few months ago after reading it on this forum and doing my own research on safety, I increased my dosage of Vitamin C step by step to 15g per day, about two weeks after that my remaining balance issues disappeared and have not come back.
I don't know if my improved condition was caused by the Vitamin C dosage increase, I am also not sure about the Verapamil. For this reason I do plan to stop both of these in the next few months so see if my condition changes. I will update the forum.