The Hydrops from Hell

Just typing the word, hydrops, gives me anxiety. Researching this word can make you dizzy in itself. Any articles you read contain bigger medical terms that lead to yet another article. Before you know it, you’re lost and forgot where you even started.

I was told by a doctor that every Meniere’s patient has hydrops, however not everyone with hydrops has Menieres. This struck my curiosity as I had seen an article about 3T MRI imaging being able to detect hydrops. According to the Internet, “Endolymphatic hydrops is a disorder of the vestibular system in the inner ear. It is thought to stem from abnormal fluctuations in the fluid called endolymph which fills the hearing and balance structures of the inner ear”. I looked further to find that “Primary idiopathic endolymphatic drops, known as Meniere’s disease, occurs for no known reason.” As I continued reading this article, I found that it is people diagnosed with Meniere’s disease that are thought to have endolymphatic hydrops; however not all people diagnosed with endolymphatic hydrops have Menieres.[1] Are you dizzy yet? Well, I’m sorry to inform you that our confusing journey on hydrops has just begun. So, put on your seat belt for the hydrops ride.

Every time I typed the “hydrops” into the search engine, Hydrops fetalis came up. I scrolled through many screens and then had to alter my search wording many times. I finally found that Endolymphatic hydrops may occur as a result of trauma such as a blow to the head, infection, degeneration of the inner ear, allergies, dehydration and loss of electrolytes or in rare circumstances a benign tumor [2] This was very interesting information. So interesting that I kept hitting the links highlighted on this site. I read that hydops can be caused by Varicella Zoster Virus, Herpes Simplex Virus type 1 and 2, and Cytomegalo virus. I was excited as if I found my first piece of what seemed to be the biggest puzzle; what actually causes Meniere’s Disease.

All my polls are conducted in the Facebook group “Meniere’s Without Borders”. I am a partnered Administrator for the group. I ran a poll for the above cited viruses. 237 members from our group, Meniere’s Without Borders voted on this poll. Only 56 people out of 237 had been diagnosed with at least one of them before being diagnosed with Menieres. [3] I was disappointed and baffled to say the least. Many members commented on other things they had, before the onset of Meniere’s symptoms; that they thought may fall into this research. The biggest concern was inner ear infections. Since that can be considered as infection or damage to the inner ear, I conducted a poll on inner ear infections. 203 members participated in this poll. 119 members had at least one inner ear infection before diagnosis of Meniere’s Disease and 84 did not. [4] At that point, I was back to the drawling board feeling defeated.

It finally occurred to me that this is why we have professionals to figure these things out. However, wanting to understand more about hydrops and relations thereof; I continued to think out scenarios. As I scrolled through more sites, the word “infections” brought itself to light. Again, I got excited and ran a poll. This poll allowed members to vote more than one choice. The question laid out different infections that members had before their diagnosis of Meniere’s Disease. 480 votes came in for this poll. 116 votes for other infection of ear, nose, throat, 103 votes for Sinusitis, 89 votes for Upper Respiratory Infection, 61 for Inner Ear Infection, 60 for Tonsillitis, 19 for Shingles, 4 for Meningitis and 28 votes for none of the stated. [5] I felt like I was finally getting somewhere. The numbers were huge. I then conducted a poll by condensing the other polls. The poll listed every virus mentioned throughout the research. 200 people participated in this poll. 176 voted yes; that they had had at least one of the viruses before Meniere’s diagnosis. [6]

Now, I just had to find out that if members didn’t get Menieres through a virus, could it a head injury? I admit that at this stage of the research, I became slightly diluted that I’m on to the causes of Meniere’s Disease. I mean, who with this horrible disease does not want these answers?

An Injury poll was conducted by listing every infection we had already addressed. If the member did not have any of the infections listed, I wanted to know about head and ear injuries. 76 participated in this poll. 7 voted they had an ear injury before Menieres and 28 voted they had a head injury. To my total frustration, 41 votes for members that had neither. [7]

Let’s take a break for a moment. I do not think I can express to readers just how aggravating these poll results are and I am the one running them! I am so happy that members are participating but honestly; do you feel like banging your head against the wall by now? I knew from 17 years experience that there is no concrete rhyme or reason to this disease. However, I thought if I could just do some of my own research, maybe, I could help us get more of a grip on the possibilities. Well, the possible causes are endless! I don’t know how many times I contacted my partner, Dave Giugno, cursing hydrops and infections but, I can assure you that that poll answer is over 100 times.

I was notified by a nurse/member that Shingles and Chicken Pox fall under one of the viruses I had already listed. Renea Berry was immediately asked to come aboard as one of our team leaders. I, and our group, need her if we are going to make it through medical terminology, no doubt. I must say that this mishap was a positive mistake in disguise. I re-centered myself and decided staying calm was best if I was going to get anywhere good.

Back to researching, I found that hydrops and viral infections are connected. [8] I thought to myself, ‘I finally found the key words to wrap this “hydrop thing” up!’ I hit the link with such enjoyment and could not wait for the connection that would bring the unknown to light. If I add up all the research and this final piece, we may actually find some peace. Link uploaded and I don’t remember much of the next five (5) minutes. I pinned clipped my partner, I threw my phone, I yelled at the ceiling, I cursed Menieres and I sat on the floor crying. The common cold by definition is, “a common viral infection of the nose and throat”. [9] You have got to be kidding me. All this research and this is what I came up with at the very end! The research added up indicates that everyone with Meniere’s has hydrops, hydops and viral infections are linked and the common cold is a viral infection. Who hasn’t had a common cold at least once in their life? Well, I conducted a poll. Either 10 people out of 134 participants are really lucky or they had brain fog when answering the poll. [10]

I was determined to write this article with some lead to better answers for us warriors. I conducted another poll as I remembered allergies play a part in hydrops. [2] 178 participated in answering if they were tested for allergies and if they were; did they test positive for things to do with nature/outdoors/seasonal allergies. 32 members answered no, 69 answered yes and 77 were never tested. [11]

Although the circling of researching hydrops and related subjects was frustrating, I did learn new information about Menier’s Disease. I also realize now more than ever, that we need more funding for professional research. Over the years, we have gained and collected more insight but, there are still so many unknowns to this disease. Someone needs to connect the dots. I believe there are different types of Meniere’s Disease; just like there are types to other medical conditions, such as Diabetes. I hope to one day see the puzzle of this thought brought together.

Speaking of Diabetes, Dave Giugno, did a poll on this medical diagnosis in relation to Menieres. 42 people participated in this poll. 14 claimed to be pre-diabetic, 2 had type 1 with Menieres and 26 had type 2 with Menieres. [12] I would like to conduct further research and reading on this subject. I have heard many Meniere’s patients state that sugar works for or against them with Meniere’s Disease and other Vertigo related conditions. I, for one, have noticed that a large intake of sugar when feeling dizzy, sometimes escapes an attack. I was tested for Diabetes multiple times with no detection of having any kind.

Dave Giugno, also conducted a poll on the Gentamicin shot as he has had this form of treatment done. 33 members participated. 6 of those members said it worked for them. 10 said they had more than one (1) shot and it worked. 17, which is more than half of the votes, voted it did not work. Many left comments under this poll. I have included some with the poll results as it was interesting to read what members had to say. [13]

The last thing I want to cover is research I thought of on a whim. My personal partner is left handed. I saw him writing one day and the thought crossed my mind that it would be odd if I found things related to Meniere’s Disease and what side of your brain you use. People who are left handed use the right side of their brain the most. They make up roughly 12% of the population. You will be interested to know that it is scientifically proven that they are more prone to headaches and allergies. [14] We know head pressure/headaches are symptoms of Menieres and we saw previously in the research that allergies are connected in some way. Again, one would think a poll would line up to the facts. Once again, it did not. Believe it or not, only 25 people out of 259, were left handed. [15]

This concludes the roller coaster ride of hydrops and related subjects. May we find more scientific evidence, research, answers, and spin free days.

~ Regina Jackson , a/k/a Gina Marie

Administrator to Meniere’s Without Borders (Private Facebook Group)

*Suggested Article read: 7 Facts about Meniere’s Disease by Rita Power [16]

* Suggested book read: The Color of Broken by: Amelia Grace

-Polls were conducted on the group during the week of July 2, 2018.-This article/report was written by Regina Jackson (Gina Marie) and completed on July 15, 2018. -Special thanks to Dave Giugno for all his assistance in helping me to prepare this article.
RESOURCES:
[1] Meniere’s Society
[2] California Ear Intitute
[3] Gina Marie/Meniere’s Without Borders Private Facebook Group members
[4] Gina Marie/Meniere’s Without Borders Private Facebook Group members
[5] Gina Marie/Meniere’s Without Borders Private Facebook Group members
[6] Gina Marie/Meniere’s Without Borders Private Facebook Group members
[7] Gina Marie/Meniere’s Without Borders Private Facebook Group members
[8] PubMed.gov
[9] Mayo Clinic
[10] Gina Marie/Meniere’s Without Borders Private Facebook Group members
[11] Gina Marie/Meniere’s Without Borders Private Facebook Group members
[12] Dave Giugno/Meniere’s Without Borders Private Facebook Group members
[13] Dave Giugno/Meniere’s Without Borders Private Facebook Group members
[14] Leftyfretz.com
[15] Gina Marie/Meniere’s Without Borders Private Facebook Group members
[16] RESTOREDHEARING.com

Autoimmune Disease and Meniere’s

I was told during my MD (Meniere’s Disease) diagnosis in 2001, that the MD was auto immune related. I was so overwhelmed by everything that I honestly did not ask important questions seeking deeper knowledge. Years went by and I was diagnosed with more conditions, continually hearing the words “autoimmune disease.” I now have Meniere’s Disease (MD), Fibromyalgia, Crohn’s Disease, Sacroiliitis and survived Melanoma skin cancer three times. The fact that one third of MD patients have autoimmune disease [1] is intriguing. What are the other two thirds? Would this make my theory that there are “types” of Meniere’s disease true? Take the walk with me and let’s see what we find. Remember, we need baby steps here. I’m crossing my fingers that we don’t end up in Hyrop Hell. [2]What is autoimmune disease? Autoimmune disease is a disease in which the body’s immune system attacks healthy cells.The immune system normally guards against germs like bacteria and viruses. When it senses these foreign invaders, it sends out an army of fighter cells to attack them. [3]Basically, when you have auto immune disease, your body attacks itself. It sees an organ, muscle, joints or skin as a virus. The body then releases an overload of autoantibodies and goes to war on the healthy cells.What causes autoimmune disease?Doctors have no idea what causes the body to send the incorrect signals to attack non-foreign entities of the body.Healthline lists 14 common autoimmune diseases. [3] I’m not surprised Menieres didn’t make the cut even though one third of Menieres patients do have autoimmune disease. Forbid if we get any awareness. What makes this even more frustrating is that a simple test can determine if you’re autoimmune deficient.What is the test for autoimmune disease?Doctors use an antinuclear antibody test (ANA). If the results are postive, you have autoimmune disease. However, more test need to be performed to conclude which one(s).Putting it together for you:Let me put all this information in a simpler light. When your symptoms suggest to a doctor that you have a disease stemming from autoimmune disease, they usually run an ANA test first. If it’s positive; they take that, add your symptoms up, perform more tests and try to come up with a correct diagnosis. So, think of it this way:If you have Lupus, Celiac Disease, Addison’s Disease, Crohns, IBS, MS, Fibromyalgia (just to name a few) and sometimes Meniere’s disease falls in this category; it’s like “sub-diseases” of your autoimmune disease.When I am asked by a new specialist “what’s your health conditions”, my answer always comes out the same. “I am autoimmune deficient. My diseases are Meniere’s, Crohns, Fibromyalgia, Sacoiliitis, 6mm lipoma center brain, melanoma skin cancer survivor, vestibular issues and high blood pressure.” I just recently got diagnosed with Iritis. I wasn’t surprised to hear that it is most definitely going to be a chronic condition for me because I have autoimmune disease. I start with the main issue, autoimmune disease, then work my way through. There is a perfect example why I do that. I most likely saved myself from a year of unknown answers, trial and error on medications, frustration and pain.I was curious if other MD (Meniere’s Disease) warriors even knew if they had autoimmune disease or knew about the ANA test. I ran a poll in my (and Dave Giugno) private group, Meniere’s and Vertigo Without Borders. 122 members participated in this poll. 11 members knew about the ANA test, were tested and tested negative. 10 members knew about the ANA test, were tested and tested positive. 24 members did not know if they ever had the test however, at some point, they were told they had autoimmune disease. 57 members voted that they never had the test and that autoimmune disease was not ever addressed by a doctor. [4]In the words of my sassy nine (9) year old daughter, “Say what, now?” More than half that voted never had this addressed by a doctor even though one third of MD warriors have autoimmune disease? That makes absolutely no sense to me. What makes it worse is the subject of treatment. Have you ever heard “what works for me, may not work for you”? Well, here is a great example of why. If you do have autoimmune related Meniere’s Disease, certain medications will help give relief that will not help the other two thirds of warriors.Now here’s the funny part! I went back and conducted a poll curious about those 57 members who voted that, “they never had the test and that autoimmune disease was never addressed by a doctor”. This poll was only for those 57 people and I wanted to know if they had any other diseases or illness. My reasoning was simple. If they did have other diseases, they just may have autoimmune disease. In that case, there may be better relief options for their MD. 102 people voted. Wait! What!? I had to laugh at this. Brain fog at it’s finest here, folks. Or, did I learn that people are jumping to give information trying to get more answers. I’m going to vote both!Many members started listing diseases and I could actually feel their anxiety through the laptop screen. I understand completely. It’s very difficult to even want to go to the doctors anymore. Let’s be honest, we get told we have yet another disease, no known cause, and….no cure!I did attempt to conduct a more basic poll. 148 members from Meniere’s and Vertigo Without Borders participated. 61 voted they did not have autoimmune disease, 57 voted they did have autoimmune disease and 30 voted that they did not have a clue what it meant.I am not a doctor nor do I have any medical degrees. All I have is 17 years experience, more doctor conferences than I can account for, 4 specialist, research and an amazing group of MD warriors. However, it boggles my mind that the ANA test is not being one of the first things every doctor addresses with a possible case of Meniere’s disease in front of them. Why? How many medications did you have to do trial and error with before finding the combination that worked for you? Doctors are very aware of the successful results of medications that can help give autoimmune patients a better quality of life. If they knew from the start whether or not you have autoimmune disease, couldn’t that cut the time in half of finding what works for the MD patient? I do not blame the doctors. In my opinion, it’s the lack of awareness and research.Well, what’s the other two thirds? Although I found no “title” for the other two thirds of MD patients; I did run into some very interesting information about those two thirds. You’ll have to bear with me though to understand. The article states, (speaking of MD patients as a whole) “Common triggers include salt, caffeine and alcohol intake, environmental allergies, hormonal fluctuations (such menstrual cycle or pregnancy), psychological stress, or barometric pressure changes (such as storm fronts or airplane travel).” HOWEVER, it continues with the fact that two thirds of MD patients are triggered by salt, alcohol and caffeine. [5] I have autoimmune related Meniere’s Disease and guess what are NOT my triggers? The ones mentioned regarding the two thirds of MD patients. Are you connecting the dots here?My theory is simple. But, how I can get research on this theory and the medical board to reconize it, is very difficult. In my opinion there is a very good chance that there are really two types of Meniere’s disease: Type 1 Meniere’s Disease (AI) and Type 2 Meniere’s Disease (Non-AI). Wouldn’t it be fantastic if I was right. It could help so many people save time and gain a little more quality of life.Only research and time will tell.*Feel free to leave your email address so you can be notified directly when a new article is posted*Resources:[1] sciencedirect.com[2] meniereslifewithginamarie.com (article “Hydrops are Hell”)[3] heathline.com[4] Facebook private support group, Meniere’s and Vertigo Without Borders[5] masseyeandear.org