Thank you for the hugs Vicki and hugs right back to you! xo I think you're probably right that stress has been my worst enemy recently. Getting a certified letter in the mail stating I may be going to prison was certainly a shock to my vestibular system! I think upping my dosage of Lauricidin may help and I'll still be well below the recommended maximum dosage of 12 tsps per day. All of these little episodes where I've been teetering on the edge of having a vertigo attack have left me a bit shaken but I'm still very, very grateful that I've not had a full blown attack for the past 6 weeks. I know you had almost immediate relief from vertigo attacks once you began taking an antiviral but did you have any small setbacks the first few weeks or months after you started taking AVs?
Yes I had setbacks but never vertigo, but close to it, and still do if I don't increase my dose during times of stress, fatigue, illness or allergies. It's like a juggling act to know when to increase or stay the course but a helluva lot better than vertigo for sure!
No vertigo....AMEN to that! But good grief you're right, for all the juggling we have to do on almost a daily basis we should all be working the carnival circuit. I'll tell ya, if they find a REAL cure for this disease in our lifetime I'll be hosting a giant MM bonfire and everyone is invited to come along and burn their meds, their canes, their walkers, their supplements, their OTO's and ENT's phone numbers and anything else they'll no longer need. It's just so exhausting having to live at the hands of the beast every single day. Waking up in the morning and not having to wonder what the day will bring MM-wise would certainly be a blessed relief!
I hope a cure happens and soon, but after having this disease for 50 years and not having vertigo or dizzy spells for the last 2.5 years is still a miracle to me.
Hey, I get little dizzy feelings from time to time but they only last a few seconds. And I think the low blood sugar has something to do with it. One week short of four months without vertigo. I'm back to two valacyclovir 1,000 mg, lysine, OPC and monolaurin. Stree is very bad for us. I suggest exercise and lots of water to help with the stress. You are strong Lulu. You can make it. You will make it!
So sorry for what you're having to deal with Lulu. When my mother died I was shocked at how my siblings faught over everything from funeral arrangements to who got her personal belongings. Especially since half of them had only traveled to see her a couple times in the ten years prior to her death. Nothing like a death in the family to bring out the worst in some people! I am seven weeks vertigo free now but still have "loopy" times that I attribute to rainy days or maybe eating the wrong thing. Still, like others have said any day without vertigo is a good day!
Great news! Sharon n Santa. Most days I don't even know I have MM, in fact sometimes I forget to take my acyclovir at the time I take it because I feel so normal. Its only when a few things happen as I mention before, a lot of stress, lack of sleep, allergies (not an issue now that I am going to that allergy researcher/doctor) and illness. I don't even get dizzy spells anymore except for those times I just listed. Lulu have you thought of getting tested for HSV and then retesting in a few months to see if the lauricidin is actually killing off the HSV?
Santa and Sharon thank you both for your very kind thoughts and I must say too that I'm so very pleased for both of you! May your vertigo free days continue without end. Hearing of fellow Menierians who are fighting the good fight and slowly conquering the beast always brings a smile to my face. Sharon my heartfelt condolences on the passing of your mother and all the difficulties you had to face from family members afterwards. It's so very painful having to deal with the loss of a loved one but to have that loss made even more painful by the uncaring actions of others just makes the healing and grieving processes so much more difficult. Caring, understanding hugs to you. xo P.S. Santa - I may need you to slip a 'get out of jail free' card in my Christmas stocking this year so if you could please keep me on your "nice" list I'd be most appreciative. Thank you so much Mr. Claus.
Oh Vicki, to be honest I was so discouraged with my OTO and PCP at my last appointments that the thought of asking either of them to test me for HSV makes me shudder. Neither of them felt there was any connection between MM and any type of Herpes Virus so they'd likely turn my down anyway just as they did when I asked them to prescribe antivirals for me. I didn't even run it by either of them when I decided to start taking monolaurin. Sad to say but I almost feel like I'm better off just going this alone without any input or help from either one of them.
I'm sorry to hear your medical team is not supportive. I hope you can find doctors that are. But you are definitely not alone. I'm going to pm you with some info.
This sounds oddly familiar. I spoke with my OTO and my primary care about anti-virals, and neither of them were receptive. The OTO flat out told me, via his nurse, that anti-virals wouldn't help me. When I asked the nurse to ask the doctor why they wouldn't help me, I never got a call back. The appointment right before that he told me that the only next step was gent injections or shunt surgery. Funny that the doctor makes a lot more money when he performs injections or surgery than just over seeing a course of anti-viral medication. But that has nothing to do with his decision making process, does it? (rhetorical question) That's when I went into overdrive on the personal research front and found this forum. Been on JOH and anti-virals for 3-4 months now and it's going on 2+ months without a vertigo attack. At some point, assuming my recovery continues on this same trajectory, I'm going to write that OTO a letter and ask him how he is honoring his Hippocratic oath when he is uninterested in what causes this disease and treating it in the least invasive way possible. Western medicine is a money machine, nothing more. The overwhelming majority of it's participants in it only to line their pockets, the welfare of their patients being only a distant secondary concern. I was on the verge of wanting to eat a bullet, and he's playing games with my health in order to make more money. 1 Timothy 6:10 For the love of money is a root of all kinds of evil. I'm not bitter at all... lol
SO happy to hear you have been vertigo free for more than 2 months, that is awesome! Chances are it will continue to stay away, just stay away from foods higher in arginine than lysine and you may need to increase your dose temporarily under certain conditions, like extra stress, lack of sleep, illness etc. I agree with what you said but I think for those doctors who want wanted to an an av a try it can be greed, or just plain ignorance/stubborness in not wanting to try something that is not in their medical books.
Don't even bother to confront your physician about your demonstrated efficacy of the two alternative therapies, the prescribed antiherpetic drug and my regimen (http://www.zoominternet.net/~kcshop/JOH.pdf). It will be an utter waste of time and will only anger the fellow. He's the DOCTOR. You are but a layman, off the street. You can't possibly know more about the recognized (last-century) idiopathology of Meniere's. He's already told you the medically-accepted truth: for relief (maybe), you can have only the gent injections or a shunt surgery. We would all presume that all physicians would wonderfully engage in an evidence-based search for new, effective MM treatments. Thankfully, a good number of physicians actually do that; they actually listen to their patients and intelligently consider their thoughts and presented evidence (such as the Gacek paper: http://menieres.org/talk/index.php?topic=557.0 ). But your guy has demonstrated a profound arrogance, rejecting even any discussion of alternative therapies. He's the expert, and he knows it. You can't possibly have anything helpful to offer. You (or your insurance company) aren't paying his big fees for him to be a therapeutic sounding board or soothing friend. He has the only viable answers, and they are as stated (and expensive). The only viable option, if available, is to find another physician. This guy is a classic. (And if he hasn't, he will assure you that your symptomatic relief is only placebo; and you'll come crawling back to him begging for injections or surgery soon enough, he's certain.) He's the kind of guy that if he were paid a C-note ($100) to spend 20 minutes to scrutinize Gacek's paper, he'd still simply say at the end of it, "There's just not enough evidence there. This work needs to be replicated once or twice by others, and new papers then published. When that happens, I consider the matter." Knowing full well that no such subsequent research or papers will appear, he can be assured of dozens of new MM patients with recalcitrant forms of the disease that can only be treated by his injections or surgery. His car payments for the BMW out in the physicians' parking lot are assured. Next patient, please. --John of Ohio
If any of you recall when I first found out about antivirals from these forums I went to my ENT with my arsenal of documents I printed out. She was willing to write me a script and within 4 days my daily vertigo attacks and dizziness had stopped. She wrote me a script for 1 or 2 months I do not recall. I went back to her when my script was running out asking for more. She refused and told me it was just a placebo effect. I left her office in tears, I was so upset because for the first time in 47 years I was not having any vertigo attacks. Well that was over 2 and a half years ago, and I am still vertigo and dizzy free. I haven't been back to her since, I have not been back to any ear doctor. Haven't had the need yet. But if I get a sinus infection or some other issue like that , etc I will see her and tell her how I have been on antivirals. I dare her to tell me its a placebo effect now.
I know. It would be cathartic for me to write the letter though. I am well aware of the fact that he will say it's just the placebo effect. In reality, I'd be surprised if he even responded at all. I'm not kidding when I say I was considering eating a bullet. I would almost say that I tried to commit suicide (sort of). I stopped eating at one point and thought that eventually my heart would just stop beating. Know how much weight you loose when you stop eating? Lots. All that understandably scared the crap out of my wife which shook me. I wasn't thinking real clearly at the time. You know what puzzles me endlessly... when a doctor says something is idiopathic, he is by definition saying he doesn't know the origin of the disease. And when someone comes along with a plausible theory and evidence to back it up, he gets... categorically ignored? It's willful ignorance. He doesn't want to know the cause, because he has spent his entire career developing skills to treat the disease in destructive ways and he makes a killing doing it that way. If he suddenly doesn't have to perform surgery anymore and a pill can fix his patients problems, his salary gets cut in half or more. Such people are a waste of oxygen and the system that supports them is irreparably broken and needs to be burned to the ground. I wonder how the doc would respond if I asked my local newspaper to publish an article about my story and physician arrogance. Or... is there any basis for legal action against such a person? I'd really like to see that guy, and those like him taken down a peg or two. He doesn't deserve the title of "doctor". Or maybe I should just forget the bastard and move on with my life.