Hello everyone, It’s hard for me to write something in these cloudy times… I am completely lost and, at the same time I feel like I am on my way to my death sentence. On first part I will explain my medical life and on the second one I will post about my “death sentence” and how I will probably end as homeless (everything around me is falling). ----2018–2024---- The End of Normal Life ---Hypothyroidism (Hashimoto)--- (2018) (Didn’t care too much about this) When I discovered my dermatological problem, my doctor recommended that I check my thyroid… and surprise, there was a problem. I wasn’t too affected by this because I knew there was a treatment, and it wasn’t going to affect my life too badly… just a bit harder with body weight (which I managed to oscillate between normal—obese—overweight—normal) and other small things. But from an external point of view, I was okay with my new lifetime pill. ---Alopecia Areata, which evolved into Alopecia Universalis (2018–2024)--- (The Nightmare) This had a long process that extended between 2018–2024 (still ongoing, but you will read something interesting). I was devastated when all my hair suddenly started falling completely from my entire body, and I had to accommodate myself with my new blank face. In the past, I was a guy who always wore a full beard and mustache, had very thick eyebrows, long hair, etc. On top of that, all my nails started to become disfigured and extremely fragile. Even trying to take something from my pocket would result in an exfoliated, half-broken nail. Washing my hands? My nails became like wet paper... At the beginning, it was hard. Everybody kept asking me questions, and everyone thought I had cancer. When I looked in the mirror, I felt miserable, like my life was ruined. During this time, I was studying for my Mechanical Engineering degree. I tried to focus on my studies, and thanks to my lovely family, girlfriend, and friends, I somehow managed to get over it and accept my fate as the guy who would no longer have any hair. I realized that it was only hair, just an appearance issue. Later, I discovered that sweaty summers without eyebrows were a bit hard, but I managed to adapt. The only thing that kept bothering me was my nails. My hands became unusable in some circumstances because my nails would hook, scratch, or break when I touched anything. I eventually found a solution—using 3–4 layers of nail polish, which kept them intact for almost 8–10 hours of daily life activities. But I had to be careful with anything that required the use of nails. (Believe me, you need your nails for sooooooo many things… like opening a can—yeah, impossible). ---Oral/Dental Disease? ---- In December 2020, when my hair was in the process of falling (I had only one patch left on the left side of my head), I suddenly developed another disease, which I thought would almost kill me. I had a problem with a tooth that I was treating, but somehow, I developed a herpes infection inside my mouth… mostly on the left side (tongue, gums, and inside my cheek). It was horrible. My lower wisdom tooth had some gum overgrowth on top, which hadn’t bothered me before, but from that moment, it became a nightmare… At first, it was hard to eat. Within 1–2 days, it developed into extreme pain with any movement. Then, drinking water became painful as well. I tried everything—ibuprofen, lidocaine, you name it. Nothing helped, or if it did, the pain was only slightly reduced, just enough for me to barely drink some water to survive and eat blended bananas (which was also painful). My dentist gave me some antibiotics (I don’t know if they helped at all), performed multiple cleanings over several days, and did other procedures. After two weeks, the infection (or whatever it was) started to fade away and heal… thank God! P.S.: From that moment, my hair started falling extremely fast. Within one month, I became completely bald on my head (though I still had some beard and some eyebrows). Time passed. I finished my studies as a Mechanical Engineer and even started a Master’s in Concept, Design, and Projection for the Automotive Industry. I became more confident in myself, always thinking that at least I could move, breathe, see, and hear—so other problems didn’t seem like a big deal. ----From June 2024---- Until June 2024, my nails went through different stages, but the progression was toward regeneration—they were almost normal... almost. Then in June, suddenly, I started noticing some hair on my face. Not a lot, but when you’ve had zero hair for years and suddenly see 10 hairs on your eyebrow, 10 on your mustache, and another 4–5 on your beard after almost three years of baldness… it’s something! ----October 2024---- (Never took medication, vitamins, or anything for hair/nails/AA/AU/etc.) My eyebrows are about 75–80% grown and look almost normal, my mustache is 80–85% normal, and my beard is growing slightly on the right side, with some thin peach-fuzz hairs on the left. Another big surprise—my head started growing hair again! Not a lot, but enough to see. In patches, but still positive toward regeneration and progression. ----The Nightmare: Meniere!?---- 06.11.2024 – Woke up extremely dizzy, but that was all. 07.11.2024 – Everything was normal. 08.11.2024 – Woke up with a sensation of fullness and pressure in my left ear. My hearing was a bit strange but nothing more. 09.11.2024 – Went to an ENT ASAP. After an audiogram, I was told it was SSHL because I had mild hearing loss at 250, 500, and 1000Hz. I was prescribed prednisolone for five days. Everything went well. My hearing started returning to almost normal (80%), but the pressure remained. I had mild pain behind my head (only on the left side), and the left side around my ear, near my jaw, felt a bit numb compared to the right. But I was happy that my hearing was recovering. 13.11.2024 – Things went bad. I started experiencing severe dizziness and vertigo. Somehow, I managed to drive home. 14.11.2024 – Vertigo calmed down by 70%, but I was still dizzy. My hearing changed again—low frequencies returned to normal, but 6000–8000Hz dropped to moderate hearing loss, along with my new friend, tinnitus. 17.01.2025 – I started your regiment but I think it’s an old version with the: -Lysine, Vinpocetine, Vit C, E, Ginkgo + Vit B complex (B5 and B6 100mg). 19.01.2025 – I start to hear my blood flow in my left ear, like a pump that pulse it and you hear the fluid moving, not very loud but enough to hear it when is completely silence. 20.01.2025 – Tinnitus at 7500–8000Hz. Manageable but annoying. Hearing slightly improved; 6000–8000Hz went to mild hearing loss. Vertigo was almost gone, but I still felt some mild dizziness when moving my head too fast. Later, I developed a weird “feature”—when I pressed one point inside my left ear, my eyes moved to the right, and when I released, my eyes moved back. My ENT suggested another scan. My first CT and MRI were clean, but I hadn’t had this symptom before. 21.01.2025 – I stop to take any vitamins or regiment. 23.01.2025 – Second CT scan—everything was perfectly fine with my ear structure. 25.01.2025 – My left ear became completely full, with high pressure and very bad hearing (almost deaf). Any sound hitting my ear felt like a punch, like my eardrum wasn’t moving. 26.01.2025 – Started Prednisolone (which usually helped before). 29.01.2025 – I start to develop some area on my body where I have some itchy rash/urticaria? Left interior lower calf a patch in diameter of approx. 7cm, right same spot but smaller, upper front right leg a small zone too, 3-4 dots on left hand and some on right arm…. 30.01.2025 – My hearing kept oscillating between improvement and worsening. I also started feeling "funky" and weird pressure in my right ear and had spontaneous tiredness. 31.01.2025 – Hearing is still bad in low frequencies, worse than before 25.01.2025 but not worse than at its peak. Phone calls sound weird in my left ear, and headphones sound like there’s no bass at all with a strange tonality. Feeling "funky" and weird pressure in my right ear but when away during the day. Later somehow, my low frequencies started to come back a bit and hear a bit better. 01.02.2025 – Bad low frequencies again and I feel like my brain want to hear more with right ear or like all the sound come from the right ear, but if I cover my right, I can hear with left but not all the sounds. Itchy rash seems to grow on my skin and I started to take Zyrtec 10mg for allergy (in case of any...) ----Medication---- - Betahistine 24mg 4x per day; - Diamox 250mg 1x per day for 5 days with 2 days pause;( 5 per week) - I am taking prednisolone too but almost taper it out in 2 days. - Nasacort spray 2 times per day (ENT prescription...I don’t know if it helping in any way) ----Diet/lifestyle---- - I excluded a lot of foods from my diet, it’s easier to talk about what I actually eat: Green fresh leafy salad plain with nothing; Cucumber; Frozen spinach; Frozen zucchini; Frozen/Fresh mushrooms; Sweet potato; Fresh/Frozen fish; Chicken meat (sometimes); Liver (pork/beef); Fish oil 5ml/day; Bananas; Blueberry; Citrus fruits; (All this food is cheap but as clean as possible, due to my financial problem which you can read in my second post) - I don’t exceed 1-1.2g of Salt/day (sometimes even lower), which is 387mg - 465mg Sodium (this is the sum of nutritional value table, I do not add any salt) - Sweets….0, well I eat like 2-3 bananas per day and some blueberry sometimes. No bakery, No cake, No chocolate, Nothing Nothing Nothing! (And it’s killing me…I always loved to eat something sweet, even small piece of chocolate or something) - I drink around 2-2.5L of water per day. - From 06.11.2024 until today 01.02.2025, I lost 13Kg without wanting to lose any kilo! (Now I weight 80kg= BMI 26.1 > Overweight but looks like I will be in the range of normal weight soon…)
Second part...... To be honest, I am really ashamed to talk here about my second part that I promised… I feel like a beggar. I have always been the kind of person who does whatever needs to be done without asking for help. Shortly… I am lost. I feel like a heavy weight on the shoulders of my future wife and my parents. I ended up in a country where I don’t speak the language very well, and English is a big no-no for them… Seven months have passed, and I have no job. I have applied to LOTS of jobs in every industry, including Mechanical Engineering, and nothing… My savings are gone. Now I need money to live and for medication. I am an entry-level engineer with around three years of experience, and due to the current world crisis in the industry, no one wants to hire me… or even give me a chance for 1-3 months to prove my skills, which I am confident in. My entire life, I have been the kind of person who always helped others—strangers, friends, anyone—without even considering asking for anything in return. I never felt the need to announce my kindness to the world because I believe that’s how we should all be as humans. I didn’t care that not everyone had good intentions; I always tried to be as good as possible. I was never perfect, and maybe I could have been better, but I was too stupid to realize how. I feel like the entire universe or God is punishing me, and I don’t know why. I have never been a mean or bad person to anyone, at least not intentionally. My life has already been hard until now… It was already enough that I had no job and so many personal problems, but now I am going deaf. Besides the fact that I will probably lose my ability to hear and speak with my family for the rest of my life, no one will want to hire someone with a disability. No one wanted to hire me when I was healthy, so what chances do I have now? I had many dreams—not crazy ones—just simple ones. To be a good man for my future wife and kids. To see the beauty of the world. To own a car or at least a motorcycle so I could travel. But I lost all of them. My only hope today is to get back to normal (which is slowly fading away and seems impossible) and to find a way to survive—to not end up homeless and abandoned. What will happen if my parents get sick? How can I help them if I couldn't even help myself? What will happen if my girlfriend, my future wife, gets sick? Or if one day she has had enough of destroying her young life by staying with a disabled person—someone who will no longer be able to talk to her, someone who will always remind her that sickness ruined our happiness? I barely have enough money for food, medication, or doctor visits. Hearing aid? Implant? Surgery? Zero chance in this situation. And I can't see a brighter future, especially now that I’m going deaf. I feel so tired. And despite all the love from the people in my life, I feel like a parasite. Maybe their lives would be better without me… or at least easier. Sorry for the chaotic writing. It’s hard to open up, even harder to write about my life on a forum… I feel like my time here is running out, or will soon… I really hope to find a job—any job—so I can earn some money, lift the weight off their shoulders, and help myself. Sorry, everybody. I deleted this many times before I finally found the courage to write even a little of this second part…
Well, today is even worse than yesterday. Hearing is very very bad in my left ear and and my skin rash/irritation is extending+ craziest tinnitus that I ever had, loud loud loud… No vertigo,dizziness or anything…feel like this is not Meniere at all. Did an audiograme test on same app that I keep doing it from the first day that I had problem with my left ear and today is the worst ever. I am almost moderate to all frequency toward to severe on some.. Universe or this life is keep punishing me and I don’t know why.
Hi, I can't comment on your previous illnesses because I wasn't there. But regarding Meniere's, you're having a similar path to mine, at least in the first few weeks. I can't guarantee anything, but in my case, the worst of Meniere's was the first 18 months, from then on I got better and I've been fine without vertigo attacks for 4 years and 6 months, I only had mild dizziness in all that time. Most people with Meniere's get better over time and in the long term they stop having attacks, so be patient. I'm sure it will get better, try to rest and not stress yourself out, stress is not good for anything. Go to a psychiatrist if you feel you may have depression or anxiety. Regarding the regimen and betahistine, they are long term. There are people who notice improvement after two months, but many of us have taken 6 months. Given your good diet you can reduce the regimen to just taking Lysine, vitamin D3 and B12. Also keep an eye out this month for the final results of ebselen (SPI 1005) which seems to be a very promising drug. We have a thread on the forum where we talk about it and where you can read some testimonials from users who participated in the clinical trial, most of them are positive. Stay strong and calm, we have all felt miserable at some point. In my case, the antidepressant helped me to take my illness with "humor."
Well, I try to be calm but you know…I am in the middle of the house which is burning and I am drinking my tea. Same, I take the illness with humor and try to be optimistic as possible…but there are many other things that can influence this, like not having an income to assure yourself that tomorrow you will have money for medicine and food…let’s not talk about the cost of psychiatrist. Regard vertigo, to be honest, I had just one episode that was long with no stop. From 13.11.2024 until early December, from that moment, i had zero but many hearing loss episodes and pressure that went away with prednisolone, which now seems like they are coming to stay even with prednisolone. Regard the new medication, I read but I am from Europe that will mean an 50/50 chance from EMA to approve it, which at same time mean that 50/50 chance to work on me (if I really have Meniere)+ at the speed of the hearing loss episodes that seems to aggravate so fast in a so short time= to probably already deaf . So yeah, I am optimist but at the same time my brain keep me to the reality. Thank you very very much for your words and your valuable time, mean’s a lot for me, a stranger!
What's the source on this? Do you mean spontaneous cessation of fluctuations, or burnout (which implies so much damage has been done that there's no more of the inner ear left to destroy?) Bluaz, my heart goes out to you reading your post and I hope you can discover what is causing all this chaos. I hope that, once released, SPI-1005 can possibly provide some benefit. The issues could have an auto-immune origin or a herpes trigger based on your previous conditions. It sounds like you are doing a lot of things right in terms of diet and medication. Adhere to anti-inflammatory diets and practices and the JOH regimen. Consider seeking antiviral therapy as well. Keep up the Betahistine -- with that high dose I would really think it should be helping.
Update for 03/02/2025: Morning: - I woke up with no no more crazy new tinnitus. Completely gone! But still with the old one, high frequency one but waaay lower in intensity then usually. - Hearing was a bit better and overall I felt good, some energy right after wake up but after one hour I got hit by a tiredness. - Skin rash/irritation is a bit worse, at 4am in the morning started to feel some itching but manageable to not scratch…took an Zyrtecset 10mg around 10am. - I was a bit dizzy then usually, could be because one day before I took only 3x 24mg Betahistine…I suspect that skin rash/irritation could be because of them as it specified as an rare side reaction… P.S: I don’t know if other have this problem too, but sometimes when I blow my nose, the left nostril that corresponds to my side with affected ear, have some blood trace in mucus…not a lot but from the day that I start to have “Meniere” symptoms I start to have different quantities of blood trace in mucus…strange. Until then, rarely had this symptom, only when I was extremely sick from cold or flu.. Later - Nothing worse happened, hearing seems to be even better then in the morning, but tinnitus seems to be a little bit higher in intensity but still manageable and close to inexistent(for my new standards..) Finally I feel like I hear “equal” and not only from right side. -My new old friend pulsatile tinnitus is back.. - Dizziness seems same or a bit increased, decided to take only 2x 24mg Betahistine (because of skin rash) but then, later I felt like better take 3 for this day too. - Skin rash later start to itch a bit and idk, seems to be steady or very small extending. Around 19:00 I took another 3x Zyrtecset 10mg. (Concern me a bit to not have another new immune or autoimmune reaction…) What is new or I changed in last days? - On 03/02/2025 I started to take prednisolone(another round, but symptoms was better before starting this high dose round) high dose for skin rash/irritation.. - I started to lower Betahistine from 4x 24mg to 3 and I will try even lower to 2. - No more spinach or other high histamine food. So I eat only peas,carrots,onions,chicken….no more fish because I am scared of the rash/irritation. - I drink some warm water with curcuma powder,a bit of black pepper and some coconut oil. - Zyrtecset 10mg increased to 40mg per day (10g in morning and 30g in evening because sleeping effect). - No more bananas… before I was eating 2-3 bananas per day. - water intake still same around 2-2.5L. - I rated some sweets and I increased a bit salt intake( or I think so because I didn’t care at all)… - I take 0 supplements, only medication with reduction in Betahistine. What I suspect and what I feel? I think I don’t have Meniere but something that mimic very well the symptoms….feels like another disease that systemic affect other thing inside me and when I find what it is, I will erase this nightmare from my life…hope to not be erased by this nightmare before I do it. But this is only my feeling, so I could be wrong and I have Meniere as my ENT said “probably…or not”. Tomorrow I will come with the update for 04/02/2025.
Update 04/02/2025 This day was kind of steady, was overall a bit better then 03/02/2025. - Hearing was a bit improved, not as good as 2-3 weeks ago but still much better the last couple days. - Pressure and fullness occasionally, but pop right away and not a big pain in the back. - I was eating without so strict salt monitoring, like every 0.x gram + I think I was eating for sure more salt then usually…and all good. Ah yeah, and bread…lovely bread. - Sugar, more then usually and low quality one (chocolate like KitKat with caramel 30-40g) + some blueberry’s and citrus fruits. - Skin rash/irritation seems to look like it has slow to/or almost stop. Zyrtecset 40mg and Prednisolone orodispersable is doing good! - Tinnitus is still here oscillating sometimes in intensity but not extremely, like 1-2 levels….and my pulasatile tinnitus still her, louder in the morning and in the evening ( wosh wosh wosh, pushing that blood or liquid ) - Dizziness….hmm, like usually or maybe a bit better then usually, I’m surprised to not feel worse. -Betahistine reduced to 2x 24mg per day, until now, nothing worsen. - No supplements, no regimentation. - Water intake around 1.8-2.2L. Soon I will find the root of my “wanna be Meniere”, I feel so or hope so. Damage to the ear is done, but I hope to stop it from spreading! See you tomorrow to my daily update for 05/02/2025!
Update 05/02/2025! This day was a heavy one, both mentally and physically… but not directly because of my affected ear. Morning: 6am woke up: Hearing was the same as on 04/02/2025—nothing new, nothing worse. 7am: Went to the lab for a blood test… the biggest one I’ve ever done. I lost count of the vials around 12 because they kept taking more. I got a good pat on the back and was told I deserved a big breakfast. Dizziness was almost absent—just slightly present when I moved my head sideways very fast, but nothing significant. (Maybe I was always like this?) No food because of the investigation, but I don’t eat in the morning anyway. Water intake: around 500ml. Skin rash/irritation seems to have stopped spreading. Itching level: 1/10. Tinnitus is still here… and my pulsatile tinnitus, always louder when I yawn or "fill" my ears with pressure (woosh woosh woosh, pushing strong), is temporarily more intense when I do that action but always present. Afternoon: 13:00 – Time for the thoraco-abdomino-pelvic CT scan with intravenous contrast. Right after the scan: drank 0.7L of water within 20-30 minutes. Went shopping for some food—lots of head movement and noise, but no problem. Hearing was still okay, with occasional 5% fluctuations between better and worse. Pressure fluctuated along with my hearing. It started oscillating a bit but then popped back suddenly. If I tried to force it, sometimes it worked, sometimes it didn’t. Overall, pressure increased by about 10-20% and oscillated before returning to baseline. Tinnitus: High-frequency tinnitus remained unchanged, but pulsatile tinnitus decreased or became almost absent when pressure increased, then returned when the pressure decreased. 14:00-15:00 – Arrived home and finally ate something (hadn’t eaten all day). Drank 0.5L of sparkling water within 5 minutes (I don’t usually drink sparkling water, but it was recommended for fast elimination of the IV contrast). Food: Nothing crazy—fresh iceberg and arugula (rocket) salad (no salt), air-fried pork heart (no salt), blueberries, bakery sweets, and some other sweet "junk". Took Betahistine 24mg (1x)—no worsening of dizziness, and nothing changed in that regard. Diuretic as well… let the pee rush begin. Took Prednisolone too. Evening: 18:00 – Dermatology appointment – Well… it didn’t go as I had hoped. The answer was something like: "It will go away, but it might come back. We don’t know the cause, so we will treat it only locally and manage the symptoms. We’ll see what your blood test results show, and maybe do an allergy test too, because we don’t know if it’s an allergy, autoimmune, contact-related, or who knows…" Increased water intake—peed 2-3 times in one hour. Pressure and hearing kept fluctuating—came and went but nothing that triggered panic mode. Tinnitus remained the same as in the afternoon. While waiting for the dermatology appointment, I started feeling tired—maybe because I had woken up at 6 AM for the blood test. Nothing extreme, but I felt like closing my eyes for a bit to rest. Later, I ate something (a bit off my usual schedule) and had some sweets—cheesecake with salted caramel (around 0.29g salt per 100g, and I doubt I exceeded 100g) plus some sweet bakery items. Took Zyrtecset 30mg for my skin problem, which seems to be improving. Slight increase in dizziness and tiredness because of the medication, but nothing significant or panic-inducing. Around 22:00-23:00, I went to sleep and took another Betahistine 24mg (1x) before bed. Water intake around 2.2-3L No supplements, no regimentation. I hope everyone on this planet feels as good as, or even better than, I felt today. I hope you all find relief and are able to live the life you once had or the one you dream of having in the future! It seems like God, the Universe, or mathematics have increased my chances over the past few days… thank you! See you tomorrow to my daily update for 06/02/2025! p.s: still loads of CV sent... and some of robotics "reject" mails..
Update 06/02/2025 Morning: -Hearing and Pressure: Woke up with a slightly increased pressure compared with yesterday or days before. Hearing still good but a bit lowered. -Tinnitus still here same or maybe a bit increased. Pulsating tinnitus lower in volume, almost inaudible but I think it’s due to pressure because is a low frequency type. - Betahistine 1x24mg, but I woke up as normal as before…dizziness is slightly better or same (idk). Afternoon: -Hearing and pressure keep oscillating but slightly increased compared with morning, increase and decrease. -Tinnitus same as in the morning. - No vertigo, dizziness same as before. - Food: anything, didn’t count the salt but I don’t think I exceeded. - New symptom: mouth feel very dry and I drank plenty of water +pee a lot.. Evening: -Hearing and pressure keep oscillating but feel like are improving comparing to afternoon. -Dry mouth and drank lots of water…I was to bathroom 3 time in 25min. - Food, didn’t count the salt but didn’t add any salt to the food. I had salad as yesterday, some chicken drums and some sweet bakery+chees cake with salted caramel(as yesterday). -Before bed at around 22-23:00PM took the last Betahistine 1x24mg. -Skin rash/irritation recovering, visible! + Zyrtecset 30mg. Overall: Ear start to play with pressure and hearing, oscillating but didn’t came back to the level where was on 04/02/2025. Still good anyway, a bit worried but yeah.. -Water intake around 3L or a little more…I went to bed still with dry mouth sensation. -No supplements or regimentation. Univers is teasing me and try to play again…can’t do sh”t so I will play the game ! Hope you all around the world are better and had a wonderful day! See you tomorrow to my daily update for 07/02/2025!
Update 07/02/2025 Entire day was kind of same so… -Hearing decreased, worst then yesterday but sometimes oscillating and get a little better but then come back to muffled or low hearing overall frequency. -Pressure same as yesterday, but no pain or anything. I felt some mild pain right where jaw articulation is close to the ear…maybe radiance ? -No vertigo, no balance problems or anything. Dizziness kind of absent or very very very low, feels like everyday subside or maybe I going crazy -Tinnitus as yesterday, maybe a bit increased in intensity. - 2x 24mg Betahistine per day, half of the dose that I was prescribed. Nothing changed nothing worsening, we will see in time but I feel like I was taking useless amount of Betahistine until I decided by myself to reduce it to half( it’s even say on the prospect that the max recommend dose should be 2x per day…) -Food: chicken drumsticks no salt added but with some homemade spicy mix like curcuma,garlic,lemon juice,coconut oil,black pepper + frozen peas with carrots and frozen bell pepper with same homemade spicy mix. Some sweet bakery, blueberry’s, citrus fruits, around 100g cheesecake caramel salt( last piece ). - Water around 2L or maybe a bit more. - Skin rash/irritation almost disappeared, just on some spots feels a mild mild itchy if I touch but nothing majore, I don’t feel any need to scratch or something. -No supplements or regimentation. >>Very interesting fact!!<< So, something strange came in my mind… I checked my daily smartphone audiogram and things looks very cyclical and food seems to not have any influence or remain to be seen. Why do I say this? My symptoms about muffled hearing,low hearing and pressure increase over last 2 weeks was same, exactly same cycle for every day of the week!(increase increase, recovery recovery recovery, decrease decrease, repeate). This week I tried to not care very much about food and salt but I didn’t exceed it anyway( I am tempted to try it to see what happens), last 2 weeks I had only clean food. Water intake was same or almost around same quantity. Betahistine reduced, so should felt something worst or not have same fluid cycle as before when I was steady on 4x 24mg per day. So…I am very curious what the hell is happening with this almost perfect repetitive cycle. P.S: Got some of my blood test results, I have all 3 herpetic viruses in my body, but inactive and have developed antibodies or indicated that I was infected in past with Epstein-Barr, Simplex1 and Simplex2….and positive active Cytomegalovirus… I would really want to try acyclovir but I don’t have or know a solution to get prescription…. See you tomorrow to my daily update for 08/02/2025!
Los vértigos del Síndrome de Ménière desaparecen con el tiempo | elmundo.es salud La enfermedad de meniere es posible que se cure con el tiempo oh no..? gracias
Update 08/02/2025 Soo, like yesterday things went a bit south.. - Hering oscillating, woke up with low hearing and during the day until around 18:00PM keep lowering. Later, around 19:00PM it’s start to come back, even better then yesterday (strange).. -Pressure kind of same as yesterday. -No vertigo, no balance problems or anything. Dizziness kind of absent, until I took the second Betahistine…for around 1-2h dizziness increased a bit compared to other days but then after slowly decreasing to normal/almost absent. -Tinnitus felt a bit louder, but not crazy. No pulsatil tinnitus until around 18:00PM when my hearing start to improve. -Food, homemade with low sodium…I am 100% I didn’t exceed 1-1.3g salt ( +I use 66% low sodium salt so 1.3g of which is 66%lower sodium then normal) -Water around 2-2.2L -Skin rash/irritation 96% visual recovery and almost no itchy(99%). - 2x Betahistine per day -I restart supplements like Lysine, Vinpocetine x1 10mg, Vit C x1 500mg,Vit E, Ginkgo, ALA,CoQ10, Magnesium bisglycinate 360mg, Zinc+ Vit D 800UI+ Vit B complex (high dose 100mg), hope will boost a bit my hearing or stop this oscillating hearing. P.S: Correction Cytomegalovirus,Epstein-Barr, Simplex1 and Simplex2 was a past infection exposure. So no active infection as blood works say… I can be a case of viral Meniere but I feel like it’s not Meniere… Hope you all have a nice and wonderful life! See you tomorrow to my daily update for 09/02/2025! p.s: Still applying for jobs, nothing came…what a wonderful society we live in
Update 09/02/2025 Nothing new…seems like my hearing is following a pattern. -Hearing stayed low and kind of bad (mild to moderate hearing loss, especially on lower 125-500hz and 4000-8000Hz) -Pressure nothing new, maybe the sensation of pressure fullness is because my hearing is affected… -Tinnitus kind of loud as yesterday with my new low frequency one, but this one sometimes is louder sometimes is inexistent+ when I present I don’t have pulsatil tinnitus, when I have pulsatil tinnitus I don’t have the lower frequency one… High frequency one still here as usually - Skin rash/irritation start to itch a bit again, not looking worse but I have the sensation of need to scratch… -No vertigo, no balance problems or anything. - Food: At around 12-13:00PM, homemade pizza gluten free with a total of 3.2g of salt for 2 persons + some sweet sliced cake. - After I ate, I got hit by a tiredness and I fell asleep for around 1h. - I stop most of the supplements because I feel it’s the only thing that make my rash to start again… so I take only Lysine, ALA and 1x Vinpocetin 10mg. -2x Betahistine 24mg per day, tomorrow I will start to take 3 to see if any improvement come to hearing… So, my last time when I had a massive drop in hearing(similar to this started 2 weeks ago) it took me around 32-36 days to recover to an level where was pretty fine and just 6000-8000 where still mid mild hearing loss… Now I am a bit worried, like this time will not come back, it dose come back every day a bit but then go back again on same day or next one…my hope is still there. I am tired, I keep fighting but sometimes I think it’s better for everyone around me that I wasn’t here anymore….everybody’s love me but I feel like I tortured them and ruining their life+not able to provide any income. I hate my self, but at same time I try to love myself. Hope you all are stronger then me and your life became easier and nicer! See you tomorrow to my daily update for 10/02/2025!
Update 10/02/2025 Morning-Mid Afternoon -Hearing worse , everyday get a bit worse and worse….but read until the end. -Pressure increased a bit + start to feel some mild pain around mandibular fossa and temporal bone + lots of pops/crackling when larg open mouth or massage that area. -Tinnitus increased, but no more pulsatil tinnitus..rest same as yesterday. -No vertigo, no balance problems, just a bit of extra dizziness compared to yesterday. - Extra tiredness this morning. - Skin rash/irritation like yesterday. - NEW: Right ear, crazy tinnitus for 10sec…loud af then suddenly disappeared. Scared the sh”t out of me… Afternoon-Late Evening -Hearing improved…yes, later it’s start again to get better and better compared to the level of the rest of the day.. -Pressure same, lots of pops and crackle and the feeling that I need to pop my ears but they don’t full pop. -Tinnitus decrease? Idk, feels like quieter than usual. No pulsatil tinnitus. -Skin rash/Irritation itching a bit only on…left leg (always my left part of the body…left ear affected,left part of head affected first by alopecia,left eye affected by alopecia,left part of the to ungur infected long time ago,left hand nails affected by alopecia…coincidence?) -No vertigo, no balance problems or anything, dizziness decreased to previous level. Meds and supplements: - Betahistine increase back to 3x 24mg every 8h. - Vinpocetin 3x 10mg (same, kinda spread over 8-8-8h) - Lysine x6 , ALA x1 - Diuretics ( I forgot to include them before, but 5x per week) Overall, at the end of the day I started to feel better…hearing improved, pressure substantially decreased, lots of pops/crackle and tinnitus lowered considerably…I adjusted so good to the loudest one that sometimes I was thinking is inexistent, but it was there present but manageable! So….what the hell? Why I wake up good, around 8-9:00am start to feel the my health overall decrease, during the day it’s stay like this or worsening or oscillating, then later I start to feel better. Process seems to repeat everyday but with different intensity for everything. If I could have a wish, any wish, I would wish that nobody ever had any health problem like this! From my lowest level of energy and hopeless, I send to you all my love and hope that soon everybody will be released from this hearing disorder. -Signed, Bluaz the stranger. See you tomorrow to my daily update for 10/02/2025! p.s: lots of job rejection, I’m still hanging in there..
Update 11/02/2025 Morning -Hearing: woke up with better hearing then yesterday!!! -Pressure almost inexistent! -Tinnitus lower then yesterday and only the high frequency one! No pulsatil tinnitus! -No vertigo, no balance problems, just very very little dizziness, lower then yesterday. - Skin rash/irritation itching a bit on left leg, didn’t extended or not to much. -Right ear again short burst of tinnitus for 10sec around 11:00-13:00PM, happened just one time. Afternoon-Late Evening -Hearing great improved…yes, later it’s start again to get better and better compared to the level of the rest of the day..seems like it almost the same as 1month ago. I am very happy about this and hope to remain like this!!!! -Pressure same, some pops and crackle sometimes but the feeling that I need to pop my ears diminished and after each pop I feel that it’s completely popped!! -Tinnitus decreased or same level, but very low and not bothering . No more pulsatil tinnitus. -Skin rash/Irritation itching a bit only on…left leg -No vertigo, no balance problems or anything, slightly slightly dizziness but nothing to worry…I am almost perfect! Meds and supplements: - Betahistine back to 3x 24mg every 8h. - Vinpocetin 3x 10mg (same, kinda spread over 8-8-8h) - Lysine x6 , ALA x1 - Diuretics ( I forgot to include them before, but 5x per week) Overall, is the best day I had in a while! Good hearing, no pressure, low tinnitus and no pulsatil tinnitus! I hope it will remain like this, the only concern now is, the second day of short 10sec burst of tinnitus in right ear. Hope you all have a wonderful day and be on the same pathway as my symptoms are now, hope you will be cured soon and be happy again with your life! See you tomorrow to my daily update for 12/02/2025! p.s: still getting lots of job rejection, I’m still hanging in there..
Update 12/02/2025 This update will be very short because everything is exactly the same as yesterday. So nothing more to say, I am happy because everything is stable except this skin rash/irritation that seems to start again!? Overall I am stable and I am scared to say it …but, I feel like I am cured at least for the moment(hopefully definitely) Power and hope for everyone around the world, you all deserve a break! - from a stranger See you tomorrow to my daily update for 13/02/2025! p.s: still getting lots of job rejection, I’m still hanging in there..
Update 13/02/2025 Well, I am happy to announce you that today nothing’s new happened. I am fine like yesterday, well, one small detail that put me a bit under stress but I hope not to be the case… but my right ear start to tingle a bit occasionally, like when your hand or leg get numb and then blood flow and feel many many tingles, kind of this…hope not to go bilateral or something… Hearing ok, no pressure, no fullness, no vertigo, no nothin…small small dizziness when move very very fast and alert +right ear symptoms.. -Betahistine 3x 24mg -Vinpocetin 3x10mg -Lysine 6x per day ( as JoH) -Sodium restriction (under 1500mg) I am happy for a 3rd day in a row! Thank you god,universe or who ever make or made this possible! Hope everyone have days like mine! Power to everybody around the world! - from a stranger See you tomorrow to my daily update for 14/02/2025! p.s: still getting lots of job rejection, I’m still hanging in there..
Update 14/02/2025 I’ll keep short today too..nothing much to say, exactly same as yesterday + right ear tingling but a bit rare today and from around 16:40PM some headache and neck pain mild to moderate( didn’t took any pills for it). -Betahistine 3x 24mg -Vinpocetin 2x10mg ( reduced to 2 because I was thinking they game me tingling and headache or not,will see) -Lysine 6x per day ( as JoH) -Sodium restriction (under 1500mg) Love and hope to everyone! See you tomorrow to my daily update for 15/02/2025!
Update 15/02/2025 I’ll keep short today too..nothing much to say, exactly same as yesterday + right ear no more tingling. Tinnitus was a bit louder from around 13-14:00PM -I did a brain IRM(all clear). -Another set of blood work test for autoimmune diseases and genetics. -Homa IR is waaay high now compared to 3months ago, limit 2.4 > 3months ago had 3.4 and today I have 6.04….), so I need to take care with prednisolone to see if it’s induced by this(which is very possible) or I need to take care to not become a diabetic. -Betahistine 3x 24mg -Vinpocetin 3x10mg (back to 3) -Lysine 6x per day ( as JoH) -Sodium restriction (under 1500mg) Love and hope to everyone! See you tomorrow to my daily update for 16/02/2025!