Two steps forward on leap backward

Santa
Maybe the weather is affecting you! You sound like a fighter, you'll get through this!

 

Santa jot down what you ate, drank, did before the attack (for the 24 hours before), you might have some MAV triggers or maybe it was something you ate or drank over the 24 hr period before the attack that triggered an MM vertigo attack it. I've come to believe the attacks don't happen randomly, although it sure seems they do, but something triggers them, the trick is to find out what the triggers are.

watch your high arginine foods those with more arginine than lysine, I was knocked on my keister from that w/o realizing what brought on the vertigo.

here is a nutritional database to check foods for anything in them
http://nutritiondata.self.com/foods-000089000000000000000.html

 

I hate this fucking disease!

 

ditto Bulldogs

 

Hi Vicki and All,

Diagnosed 30 days ago with Chronic Migraine and Atypical Meniere's. I have ongoing dizziness sometimes more pronounced than other times and only one short full vertigo attack which I could control with visual focus in less than 4 seconds. I think that is why it is being labeled Atypical. That said, I am on a migraine diet and 10 days into integrating the John's Regimen products and taking Dyazide for MM. Since I have started on John's Regimen, I am sensing an upward trend on improvement especially after all the Prendisone, antibiotics, Benzo's and several migraine meds are detoxed from.

Now its the right ear only tinnitus, fullness and disorientation in sound and sense of being on a sailboat plus a bit of pressure in my head and sorta headachy feeling. I also feel an itching in the right ear and an earache feeling some days. Anybody have that?

I have had minor cold sore outbreaks and am wondering about the antivirals. Maybe my ENT Doc would prescribe if I pushed it. Which is the most recommended, the Acyclovir or the Famvir and what's the shamanic dose and for how many days? How many days does it take to know if this is helpful since I do not have vertigo.

I was also shocked at the foods on the link that are high argentine (SP?) and bewteen that and the migraine diet, not much left to eat :-[ Based on your experience Vicki, what is the daily threshold or does it mean that all foods on that list must be avoided?

I posted last week too about how John's Regimen's products might effect migraine since, as I understand it, it is vasular dilation that creates the headache part of the migraine syndrome. John's Regimine seems anchored in achieving more blood flow into the head. Anybody have experience with this?

Indeed this sucks. Been two full years of cycling symptoms, not able to work, most friends gone away and scared about survival. Afraid I might live! Ha! Sorta true many days feeling my identity of self-sufficiency and high achievement personality dying quickly.

Thanks too to JOH and for this forum as I am learning a lot.

Holly

 

Hi Hollyflo, so sorry you are going through this. As far as threshold goes, it is different for everyone, as is the food triggers are as well. I suggest to write down what you ate/drank etc a day or so before an attack or exacerbated symptoms. It will be clearer what sets them off.

As for AV's I am taking acyclovir and have amazing success with it. But the dosage is usually adjusted by the individual at certain points.
Dr Gaceks recommended dosage is

2400 mg for 3 weeks, if vertigo is under control reduce to 1600 mg for another 3 weeks, if still under control 800 mg for maintenance.

If you find after decreasing symptoms return increase for another 2 weeks or so then try again. I had to stay on 1600 mg for many months before I could decrease to 800mg.

When fatigued, sick, stressed, or being affected by allergies increase your dosage for those times.

Good luck! and keep us posted.

.

 

Holly here is an example of my thresholds for MM, if I eat a little bit of nuts (high arginine food)I am fine but if I eat too many it bring son MM symptoms and vertigo. But if it is allergy season I cant even have 1, so I avoid them completely during that time.

My MAV threshold example. I can eat yogurt in moderation. One maybe 3 times a week. If it is allergy season I must avoid it completely or I get extremely unbalanced and vertigo.

 

Hi. I am new to this.. I was finally diagnosed with meunière disease. I also have chronic migraines. My vertigo started awhile ago and comes and goes however recently the vertigo has been more often. Some days if I turn my head to fast I will get dizzy. Recently I was in the ER because the vertigo came on so fast and strong I was like paralyzed. Vomiting and couldn't even sit up w/o falling over. Just horrible. The fullness and tinitis in my left ear is so annoying and I do have pain in my ear sometimes too. Just went to ENT last week and was diagnosed. They told me it was caused by my chronic migraines. I miss so much work and really don't have a social life because I never know what is going to set me off and I don't want to be out and about when the vertigo hits. Had an MRA and Ct and they were both good, thank god. I guess my questions are how do you function during these episodes? How do you work? I know that pressure changes affect my migraines and certain foods/drinks. I just want to live a normal life and feel right now that I cant. Any suggestions.
? Oh I am scheduled for Botox injections this week and I am hoping it will ease both issues.

 

Hi Vicki,

Thanks for your reply!

Since I do not have vertigo or sudden 'attacks' but creeping-in levels of roaring, hearing loss, tinnitus, noise sensitivity/distortion and manageable, albiet not desirable, sense of unsteadiness, does it make sense to try to the AV? Have you seen anything published or shared here that indicates that AV's help with non vertigo MM?

I am being as precise as I can with what I am introducing into my system especially the pharmaceutical stuff. BTW what are the side efects of AV's or longer term negative consequences of using those drugs? Any you are aware of from your own experience or what you have read?

Again thanks for your amazing devotion to this very supportive communication channel!

Holly

 

Hi Lisam,

The issue of Chronic Migraine and Meniere's is very interesting to me and I so relate to what you are saying here sans the crippling vertigo. I am seeing a psychologist who suggested that it is natural to find oneself isolating during the discovery phase of these diseases and before one stabilizes and then becoming more intimately familiar with the cycles, triggers and self care needed to mitigate the diseases within life. I have been unemployed a long time and personally have not ben able to look for work since I cannot make ethical representations yet about my capacities. This in itself is stressful. Kinda sucks since the diseases themselves are the source of stress Trying to live a 'normal' life with these diseases is also a cause of much stress. Acceptancing and researching and experimenting with triggers and remedies until things stabilize are more productive places to focus..at least for me.

I am curious too about the ear pain, which I also have which hasn't been adequately explained by MM or CM so far as I've heard from the DR;s nor read anywhere.

There are many references to the book Heal Your headaches which unpacks myths and ill informed pain relief stategies that keep the headaches locked in. This is a must read for CM. I did try all sorts of pharmaceutical drugs for my migraines with no good effect. I have the botox injection about 60 days ago while in the MM crisis for 60 days without end and they might have taken the edge off. I do not however like the brick forehaed affect they warned me of and am glad this is wearing off. My off the pain meds and most meds and on the migraine diet, my headaches are not so severe nor as frequent.

Best wishes to you,

Holly

 

Hi Holly,
I would give AV's a try and see if it helps, I say this because Dr Gacek has an explanation for why we all have different MM symptoms:

as told by a forum member who spoke with Dr G at his appointment with him:

"The different forms of the disease depend on which end of the nerve they are active on - from what I recall, if the virus is active on the “brain end” you suffer from the vertigo without the hearing loss. If it is active on the other end you suffer from the hearing loss / fullness etc. without the vertigo. If it is active on both ends, you suffer from all of the symptoms."

 

There have been long term studies done on AV's for 5, 10 and 20 year follow-ups and it is very well tolerated with a very small percentage of resistance and no ill effects. I have posted those studies on the forums a few times you may want to search to find them, if you can't find them let me know I will repost them for you.

 

Vicki thanks! That information from Dr G is very helpful. I like more precision than I have gotten from Kaiser. I seriously doubt that my ENT Dr will prescribe it. May gve it a go in a week or so as I become more sure of the positive JOH regimen protocol benefits over time. She knows I have chosen this route over more oral and injected steroids and wished me well at least!

Gratefully,
Holly