Isaiah, Could you tell us where you are having the surgery, and how you came to that diagnosis? Also, here is a link that connects Menieres with poor posture....this certainly describes me, and relates to my cervical spine instability...it may resonate with other people, too, especially since our Menieres can be a combination of systemic inflammation and cervical spine problems. Vestibular impairment and its association to the neck and TMJ
There are only a few doctors in the US who do the internal jugular vein decompression surgeries. I'm in California but am having my surgery done by Dr. Edward Hepworth in Denver, CO. In 2014 I received a rare diagnosis of Eagle Syndrome which is elongation of the styloid processes & or calcification of the stylohyoid ligaments (ligaments which run from the tips of the styloid to the lesser horns of the hyoid bone in the neck) which are attached to the skull base & are an anchor point for 3 small muscles & two ligaments which help w/ swallowing. I had this bilaterally so needed two surgeries one for each side to shorten the styloids. Those surgeries were in 11/14 & 8/15. Between my surgeries I had a cycling accident w/ a head injury. About a month out from the head injury, I began having horrific tinnitus, brain fog, vertigo & hearing loss. I was diagnosed w/ MD & treated for that in the subsequent years. In late 2018, my hearing began declining further very rapidly so I opted to have an endolymphatic shunt placed in my left endolyphatic duct. Surgery was in 2/19. In theory this would help w/ fluid drainage from inner ear & would stop hearing loss which it did for about 2 years. After that, the hearing loss progressed again. In 2021 someone sent me a link to a medical research article that mentioned that MD symptoms had been seen to be linked to internal jugular vein compression. By that time, I had learned the symptoms I'd initially experienced were also symptoms of IJV compression so I saw an interventional radiologist who sent me for an MRV & a CTA to look at the carotid arteries & jugular veins in my neck. Unfortunately the radiology reports said everything was fine, & the IR even went over an aspect of my images that showed all was well. Being skeptical, I got a second opinion from a friend who was experienced in reading those types of scans. He sent me 3D images which showed I have bilateral IJV compression - on the left between the remains of my left styloid process & C1 vertebra & on the right by soft tissue. The IJV can be "strangled" by nerves, muscle or scar tissue or other vascular tissues. The soft tissues causing the problem don't show up in scans but the squashed jugular does. Another tell is that the body develops collateral veins that bypass the IJVs when they aren't working correctly. I have substantial collateral veins on both sides of my skull that have possibly helped reduce my symptoms to some degree. I agree that there is a connection between MD & poor posture. That link also exists in people who have Eagle Syndrome (ES). Many of the members on the ES forum I help moderate have lost the lordotic curve in their necks. Whether that's a result of styloid elongation or the elongated styloids cause the neck to straighten out is unclear. It's possible both scenarios exist. Loss of the cervical lordotic curve is a huge problem in our current society & is primarily caused by the huge amount of time we all spend looking down at computer & phone screens. It is reversible over time w/ some simple exercises & some people on the ES forum have had symptoms relief once they started working on improving posture & restoring their natural neck curve. There is much more to this topic than I'll go into here. If you're interested in more information, you can send me a private message.
Isaiah, I'm not sure how to send a private message...... I am also in CA (Southern) and once considered going to that clinic in Colorado (maybe the same one you are having the surgery at-- I forget the name) because they seem to be the best at these complex surgeries. What tests should I get? Who would be able to correctly read them? My symptoms also include very irritable bladder, general nervous-system overload, fatigue, a feeling that my brain is "buzzed," and heat intolerance. Controlling systemic inflammation helps, but there is still a missing piece to the puzzle.... Thanks...
P. S. Did you get your idea on this problem from MSK Neurology, Kjetil Larsen? He has written on this subject of interior jugular vein compression and I am about to book a Skype session with him. (He is in Colombia.)
@JanieJiffy - To send a private message click on the Inbox avatar at the top of this page. A drop down menu will appear with the word Conversations as the top line. Click on that to start a private message to any member. I will start one with you, but just wanted you to know how to do it.
I got it from livingwitheagle.org but Kjetil Larsen's name comes up on there quite often. A number of the LWE forum members have been in contact with him. To view a PM scroll to the top of the page & click on the INBOX. I'm very interested to know what KL says when you talk to him. You can reply to the PM I left for you.
Darn... I just joined this forum site but have suffered with vertigo episodes since my 20s (71 now). I was locked out of asking questions until yesterday, so YAY I just printed your protocol. Bless you for sharing! Doctors over the years just couldn't decide my issue until the tinnitus got louder that I even noticed it. So that was several years ago I got the Meniere's diagnosis. I was so hoping for relief from the dizzy unbalanced feelings of this current attack and the tinnitus that is so loud I have trouble sleeping. Thanks all that post what seems to help them. I will continue to dig around this site for ideas. I hate taking drugs that have a host of other side effects and always seek ways to help my body heal itself.
I have done some searching and found a website called Unlock the Natural Power of Healing with Earth Clinic - Natural Remedies, Holistic Health and Alternative Medicine There are some interesting posts on the MD subject if anyone is interested on further exploration. I think JOH is got the right idea though.
I guess I should have replied here?? Still figuring this site out. You have had a plethora of health issues! I hope the Denver doctor can help. Blessings
Thank you @PNWgirl! I hope you're able to find the best course for alleviation or moderation of your MD symptoms, too! I'll come back to report if the surgery helps restore my hearing at all.
I am taking 3000 mg of L-lysine and some of the other vitamins. Trying really hard not to drink coffee and following a low salt diet. So far still bumping into the walls occasionally LOL. This episode has lasted too long! Sleeping a lot! Since I am retired that doesn’t pose a problem. I am an artist and paint in water mixable oils with no solvents. This dizziness upon waking and the constant unbalanced feeling puts a damper on my work. If I need to go out for food (I live alone) I take two motion sickness pills which does help. Tinnitus is constant. Let me know how your surgery goes. Prayers for healing
Thank you! I value the power of prayer & believe in God who loves us deeply. I hope you make headway soon in finding a way to relieve your dizziness. I know from experience how frustrating it is to feel off balance all the time.
You could also try carefully balancing your blood sugar through diet, as there is a strong proven link between Meniere's and impaired carbohydrate metabolism (you could google those terms to read the research). A low-carb, low-sugar diet with lots of veggies and six small meals a day could help and would be worth a try.
Yup, sugar is crack for us all and is in every processed food in America. Disguised as various names to try and fool us. European countries do not have have the chemical additives in their food on the store shelves. I am a label reader and am gluten free. Lately I have even been cutting out grains in general. I still have occasional rice and oatmeal, but only buy organic and long grain rice which I wash the heck out of before I cook it. I hate to eat 6 meals a day as my activity level has not been what it was. Thanks for the comment. I appreciate it.
Update, 8-16-2024 Oh blessings for the advice on upping the anti on L-Lysine. I had always taken it in a much smaller dose so it was easy to just adjust the dosage. The tidbit on taking on an empty stomach was very enlightening. I also take Ginkgo, Vit. C, Vit. D3 with K2, zinc with quercetin, MSM, B12, and magnesium supplements. Gosh do I have any money left over for food?????? Considering the price of organic food who could live on SS alone. Sorry for the whine. My intention is to report the I am feeling almost human again, YAY! Still list to the right sometimes, but careful rolling over in bed doesn't result in spinning out of control. So I joined July 23, 2024 and it is August 16 2024. I have hope for remission soon. Ears are still buzzing. Ugh. God bless. Stay stable folks.
If you eat five or six SMALL meals a day and cut out carbs and sugar, instead, eating lots of high-fiber veggies, you will find you actually LOSE weight. I have lost weight because you can only stand to eat just so many veggies! Yuk! I eat them like they were medicine. When I eat carbs or sugar (or more than a normal amount of salt) I can feel the left side of my face and my inner ear fill up with fluid and then I know I am headed for trouble with balance.
