Recently diagnosed .... very confused and need help

Hi Samaa, so sorry to hear you are having to deal with this but you have come to the right place! There are many people here that will be able to help you and give you excellent advice...unfortunately I'm not one of them lol.

The only one of your questions I can answer is that attacks can vary from person to person but it's not unusual to get attacks such as those you described (without the sensation that the room is spinning). I'm sure people will be along soon that are able to advise you regarding your other questions.

It's perfectly understandable that you are feeling lost and down but remember you are not alone! With the right treatment and advice you're hopefully now on the road to fighting this. Good luck!

 

Samaa:

If it's any help, I traveled quite a bit (many flights) when I was dealing with Meniere's. For me, vertigo came and went on it's own schedule, but was never once triggered by flying. You can bet I loaded up on meclizine and valium just in case, but never had to use it, and never had to deal with vertigo while on a plane or airports.

Hang in there. Over time, you'll likely find a treatment that allows you to manage this. If a doctor tells you otherwise, find a new doctor. There's lot's of options.

 

Look through the data base and you will find many options and opinions. This disease affects everyone differently. I know for myself in the beginning a low salt diet along with diuretics and Valium helped me. The disease advanced and I did try gent shot which gave me relief for about 8 months. My final decision to end the nightmare I was living was surgery. Now I know this is a last resort type of option so no way am I suggesting you run out and have surgery. I say this to comfort you. there are many options to try and bring your symptoms under control. If all fails you do not have to live a life of vertigo. I have a wonderful, active, vertigo free life. I know people on this board will guide you in the right direction. And finally I too have flown many times and never had an issue with my ears or vertigo. Best of luck to you!

 

What do you mean, very low blood pressure? Low blood pressure can make a person dizzy or even black out. Have you discussed this with your dotor?

 

I also have low blood pressure.

Keep in mind that one common side effect of benzos is low blood pressure. So if you're taking valium, ativan, xanax, or klonopin for the vertigo, it can worsen your low blood pressure.

 

In reality, it the same here in the US. American physicians are equally reluctant to prescribe antiherpetic drugs to treat Meniere's. They learned in med school that Meniere's was idiopathic, of unknown or unknowable causes. For these professionals, it's just ludicrous for some patient to come in off the street and tell the physician how Meniere's should be treated, with, of all things, any of the several drugs that suppress herpes viruses. That goes against everything they know and believe. First, patients are ignorant of all the cogent factors that can make a treatment both safe and effective. No patient has ever spent 7 to 12 years in intense medical training, so it's impossible for a patient to contribute any useful treatment information. Secondly, there is (in the physician's mind and experience) not a shred of evidence that the disease is caused by a herpes infection of the inner ear. He didn't learn about this back in pathology classes in med school, so, the matter is settled.

Actually, there is a third factor in modern medicine's reluctance to embrace antivirals for Meniere's. If a long and strong course of Valtrex or similar antiherptec actually brings symptomatic relief in 90% or so of treated patients, the profitability of the physician's practice in endangered (if he's an otolaryngologist). These fellows make a lot of money performing delicate, minute inner ear surgeries to bring relief to Meniere's patients who have striven for years bring things under control with diuretics (seldom chronically successful), SERC, or any of the other commonly-prescribed treatment drugs.

These fellows know that a large fraction, probably a giant majority of Meniere's patients they see will eventually need and request destructive surgeries (VNS, labryinthectomies, etc.). The good doctor won't make much money merely prescribing drugs to treat Meniere's, compared to the thousands of dollars or pounds to be gained in conducting inner-ear surgery.

So, from the doctor's perspective, one can understand (but not support) his reluctance or abject rejection of prescribing antiherpetics.

Any way around this? For some physicians, nothing will cause them to reject antivirals. If that's ones doctor, the only alternative to seek another.

But in science and medicine, one thing validates new information that contravenes tradition and legacy error: publication of a definitive article on the new perspective in a journal recognized within the profession. And that we, have with Dr. Gacek's exhaustive article on his findings of statistically-significant treatment outcomes with antiviral drugs.

Now most physicians, even ENTs, have never read or heard of this paper or of Dr. Gacek. Nonetheless, the presented data are revolutionary and should be embraced by the entire medical community. Very high rates of symptomatic relief, few or no side effects. No other published Meniere's treatment is so advantageous.

So, make a copy of Dr. Gacek's paper, and drop it off at the doctor's check-in counter a week or longer before an appointment, respectfully asking that the doctor give the paper a close read.
All of the cogent info is here: http://menieres.org/talk/index.php?topic=557.0

One final point. The paper centers on acyclovir. But subsequent experience has shown Valtrez (valacyclovir) to be more effective. Also, for some, antiherpetic treatment durations need to be several weeks or months longer than those mentioned in the Gacek paper. Various brands or manufacturers of valacyclovir have shown to be ineffective. There is a thread on this website dealing with that unfortunate topic. One wants a name-brand valacyclovir.

--John of Ohio

 

Hypothetically speaking...

If one were to go to a doctor and tell them that while one was on a vacation a few weeks ago, the old genital herpes flared up. It's ok now, Doc, but i'd like a script to keep it away.

I doubt any doctor would say no to that. And they don't test for it if you're not currently presenting symptoms.

Also, this is standard script for Shingles.

Just hypothetically speaking, of course.

 

This is hard for some people to understand or believe but sooner or later you understand this is how the world works unfortunately