To add to my reply to you. Alcohol will exacerbate her symptoms both by suppling extra histamine and by inhibition of the anti inflammatory effect of fatty acids. Histamine, a cause of the inflammation is cleared through the kidneys so more water. She can use vitamin C and L-Arginine. Both are safe, both are anti inflammatoy, and both are mild diuretics. L-Arginine has another benefit. It dilates small arterioles to allow more blood flow to the site of irritation. This response allows more of the fatty acids to get to the site and reduce the inflammation. I use such a combination to stop my symptoms. Larry
Hello Scott, I'm so sorry to hear about your girlfriend. Unfortunately, everyone on this forum knows what she is going through, so we can certainly empathize. First, I would say not to rush into anything drastic and/or expensive. Many people have gotten significant relief from the JOH regimen, antivirals, vitamins, DAO (check out Rubygirl's posts), betahistine, neck adjustments, diuretics and many other methods. It really is trial and error to see what works for each individual, and unfortunately that requires patience. When I was first diagnosed, I was afraid to go get the mail. The first doctor I saw was not helpful at all, so when I found this forum, it was a game changer. I see Dr. Gacek online and he prescribes Valacyclivor. I have also recently (Feb 2025) started taking Sertraline (SSRI anti-depressant), which has really helped! I have a clear head, very minor if at all tinnitus, and my ear doesn't feel blocked. I also have an Ativan prescription (.5 very low dose), which is a benzodiazepine, so I take that only when traveling or going to the dentist. If anyone had told me 3 years ago that I would be taking antidepressants, I would have laughed. But what I've found is that if it works for you, take it. There is still a stigma associated with ADs, but no one would tell a diabetic to stop taking insulin and suck it up, so why suffer? I am confident that your girlfriend will find something that works!
Also the PRP Treatment is different than what Dana white did because what he did is originally called regenokine/orthokine which is different than PRP because PRP concentrates platelets to release growth factors, while Orthokine concentrates white blood cells to release anti-inflammatory factors while using only blood, so definitely orthokine targets inflammation better than PRP.
I’ve read a bit about both PRP and Orthokine/Regenokine, and it seems like there’s often confusion between the two. From what I’ve gathered, PRP (platelet-rich plasma) focuses on using platelets to release growth factors that may help with healing and tissue repair, while Orthokine or Regenokine (what Dana White reportedly had done) isolates anti-inflammatory proteins from white blood cells, so although they sound similar, they’re not quite the same process. There’s very limited published evidence on either treatment for Ménière’s, most of what’s out there is anecdotal or focused on joint conditions. That doesn’t mean it can’t help, just that there’s not enough reliable data yet to say for sure. If you do go through with it, it might be helpful to ask the clinic what exact method they use (PRP vs Orthokine) and whether they’ve treated any Ménière’s patients before. You can also read a bit more about PRP treatment PRP Treatments for Skin & Hair Texas | | PRP Treatment Clinic in general to understand how the process works and what it’s typically used for. Definitely keep us updated. A lot of people here are curious to hear how it goes, and wish your girlfriend the best with finding some relief.
Highly recommend having her get a prescription of Ativan/Lorazapam from her dr for when the attack starts. It is addictive so doctors can be hesitant; mine was clear to take it only when the room started spinning (not "if" it seemed like it may). One tablet under my tongue when it starts - shortens my attacks from hours (4-6+) to about 45 min. Because it is under the tongue it hits the system and not thrown up before it can work. For me it was a huge thing. Yes the room spinning and puking for close to an hour sucks (wouldn't wish it on anyone) but knowing that it won't be for hours; knowing that I have made it through much longer ones makes a difference.
I completely agree about the Ativan. I have had a prescription for two years, but I've never raised the dosage or asked for another prescription before I needed it. I get 30 (1)mg every 4 months. I take half (.5) - as they are designed to be split if needed - before a dentist or doctor appointment, or when traveling. It works. I also take Sertraline 50mg and Valacyclovir. There are horror stories about addiction and withdrawal, and I don't doubt that it wouldn't be pleasant. However, it's usually people who have been prescribed higher dosages to start with and they may also be using other substances. I look at it as a quality of life thing; if it works, use it. I hope she gets some relief soon.
Scott: Sorry to hear about your girlfriend. I may be able to help. I have Meniere's disease, but I am also a researcher in auto-immune disease so I have an edge. There is lot of good intentioned contributors to this site, but unfortunately much of the information gleaned from this site is either wrong or unsubstantiated. So before I offer any help, here are my credentials, so to speak. Graduate paper, 1961. Amino sequence in human serum albumin. 5 years in clinical chemistry, Hospitals. 5 years toxicology research, Institute of Experimental Pathology and Toxicology. 3 years as consultant to private labs to establish protocols in clinical chemistry, serology and hematology. 2 years in hepatitis research. Discovered and published the second key to immune response. 3-4 years taught endocrine fellows at V.A hospital A number of papers published on diabetes, hypothyroidism, hypoparathyroidism, osteoporosis and trace metals. The last 18 years, independent research on stem cells, amino acids, fatty acids and toxicological effects of pharmaceuticals. Because of your reference to PRP and Orthokine, I showed your communication to my wife. Her background includes blood banking, immunology, platelet aggregation studies and one of the founders of the histocompatibility lab at The V.A.Hospital for The Albany medical center (Renal transplant program). In our opinion the use of PRP or Orthokine is not appropriate and could provoke more allergy reactions. True Meniere's disease is a autoimmune condition. What makes is difficult to diagnose and treat is the complexity and varied intensity of the symptoms. Instead of going into how and when I figured all this out, I'll give you the important points. The reason why the symptoms are so varied during an attack is that a group of nerves serving different parts of the head are involved. Headache, sinus ache, outer ear itch or ache, ringing in the ear,( usually only one ear is affected), facial numbness (one side), double vision, blurred vision, tightness in the back of the neck, runny nose. So it seems to be a bunch of unrelated symptoms. Until we look as the neuroanatomy of the head. There is a nerve crossroad just above the ear. The nerves when inflamed as a group could produce all these diverse symptoms or simply a swollen Eustachian tube. In the case of Meniere's disease the area becomes inflamed due to histamine release in an allergic response to one or more of the historic allergens that patients immune system has detected. Although the most common detection routes are mouth and nose some have suggested the gut may play a part. Here are some points I can attest to through experience. I have an allergy to Russian wheat. Painful Glossitis. An attack does not precipitate any Meniere's symptoms. Poison ivy rash does not relate to Meniere's symptoms. An allergic rash from contact dermatitis also does not trigger symptoms. Another thing to note is that it is probably more then one allergen that is responsible. Because once a person reacts strongly to one allergen they may begin to react many others, and the excess histamine makes thing worse. My symptoms occur daily and are environmental. Without getting too medical I might compare Allergen to Antigens. Both can at some point trigger Histamine release. The point which histamine is release depends on the concentration of either. For instance, in my house I got all the symptoms. In a large retail building I only get sleepy and blurred vision. It has to do with which allergen is dominant in concentration. This is similar to a bacteria that that suddenly turns infectious. Pneumococcal Pneumonia is a good example. We harbor that bacteria in our sinuses. But it's small colony size does not trigger our body to react. In the fall when our immune systemweakens and the bacteria's environment changes, the colony can grow uncontrolled. A note on this example. It's been shown that this particular bacteria does not grow well in the presence of Ascorbic acid (vitamin C). So, what did I do and what can you do? Once I knew the cause and location I modified a lotion that I developed to reverse the symptoms of aging like atherosclerosis and first applied it around the ear and had some immediate success. So I knew I was on the right track. But that does not help others because I can't sell the lotion legally. So hear is some over the counter products you can try. Each I either do or did use. Keep in mind that all have a specific purpose. And that the fancy lotion I developed has 26 different fatty acids in it. List Flax seed oil 2000mg/day -Anti inflammatory- Metabolizes to other necessary fatty acids Krill oil 1000mg/day- anti inflammatory- Metabolizes to other essential fatty acids. Don't use if allergic to shrimp. Docosahexaenoic acid (DHA). 1000Mg/day. This is new and I have added it to my lotion and have been taking it orally to see how it works with Meniere's symptoms. This is one of the two major fatty acids in fish and krill oils. Don't use fish oil unless you know where the fish come from. DHA is a strong anti inflammatory. It has some side effect at this dose level. It lengthens the growth period of hair and reduces inflammation in the Hypothalamus. L-Arginine- 500mg - essential amino acid. Dilates small arteries. Use as needed when a symptom like sneezing or runny nose occur. Wife uses it to stop bronchial spasm. Taurine- Amino acid- 500-100mg/day- There are claims that it reduces Tinnitus. I have taken it for other reasons for years. I don't have tinnitus. This is not a joke. If her symptoms are getting the best of her. Have her take a short nap. About ½ hour. Best if she can reach rem sleep. It has to do with cortisol, adrenaline, the pituitary, the Hypothalamus and histamine. I hope this helps. If you can find a willing doctor see if you can get a morning a evening Cortisol level done, It can be done on saliva. Also a serum Immunoglobulin isolation and quantitation. Larry
Yeah, not sure I’d put much faith in Larry’s post ^^ to tell me I’m good intentioned but wrong is a huge insult. Nobody is wrong here unless they are telling you someone is wrong. Sorry, this pissed me off.
Agree! Especially because the discounted "good intentioned" info often times has been given to many of us from the medical community. To date (that I am aware of) no one has been able to pinpoint causes or treatment for Meniere's that work for all. Any options shared here...in my opinion - give hope and something to try/something to ask for. I know early in my journey my drs basically said eliminate salt, caffeine and the remaining attacks sucks to be you I got nothing for ya. This board (original one then this) gave me hope. Things to ask for. Things to try. I appreciated (and still appreciate) every insight shared because this board and people are about support!