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Working impossible

Discussion in 'Your Living Room' started by Sarah Walkwr, Mar 28, 2024.

  1. Sarah Walkwr

    Sarah Walkwr New Member

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    Mar 16, 2024
    Hey guys,

    Since a few days my vertigo is pretty bad again with fatigue and a lot of anxiety. Since 6 months I’m dealing with constant vertigo attacks and I tried nearly anything, still on a lot of medication.
    Lately I’m becoming pretty stressed as well as I’m not able to continue working and I’m so anxious about my future.
    How are you guys even able to work with this illness? How do you manage a job? I am 25 years old currently graduating and I’m so worried about my financial situation as well in the future. Currently I can not imagine doing a regular office job and it stresses me out, as I need to pay my bills and somehow need to manage to live a normal life..

    I’m just interested in your experiences, maybe some of you are in a similar situation and could maybe tell me the way handling a job with MD.

    Thank you so much!

    Regards

    Sarah
     
  2. Donamo

    Donamo Active Member

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    Hi Sarah, boy that would be scary starting out your working life when this disease is roaring. For me, I was already well established and working from home when the disease struck.

    There are several "treatments", none proven, that have helped people with MD, which is really just a name for several problems caused by something wrong with the inner ear. My first success came from taking mega doses of Vitamin C. The treatment was unpleasant and unsustainable but showed me that I had some control over this problem.

    As you can see from my signature, I've had success with several "treatments" and so can you. There is a link to a good scientific paper somewhere on this site showing a link between MD and hyperinsulemia. (sp?) and that's what got me into Keto. I am currently having great success with that.

    Stress is a trigger for many of us so I think you need to realize that MD also goes into remission on its own quite often and it can be controlled if not completely eliminated.

    Once you have some success with any of the treatments, it is very empowering and your outlook will improve.

    Good luck to you and be sure to read all the info in this forum. Keep in touch.
     
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  3. Donamo

    Donamo Active Member

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    May 12, 2014
    • Like Like x 1
  4. Mr. Dutchie

    Mr. Dutchie New Member

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    Jan 29, 2024
    Hi,

    Upon reflection, I have found that optimal scheduling for me involves spreading my meetings out to avoid clustering them on a single day. Additionally, I now intentionally allocate breaks between meetings. This adjustment stems from recognizing that prolonged meetings have previously induced symptoms of ear blockage and tinnitus. Moreover, I have significantly reduced my physical presence in the office. When present, I ensure my hearing aids are muted to minimize any potential triggers. Fortunately, these measures have enabled me to continue functioning effectively. However, I must acknowledge that there are instances when my balance is notably affected, presenting a further challenge in concealing these issues.

    I typically commence my days at an early hour, thereby minimizing interaction with colleagues. Furthermore, I predominantly work remotely.
    Should any issues arise, I find that a brief Power Nap is usually sufficient to alleviate the most severe symptoms, enabling me to continue my work as necessary.

    Fortunately, my position in the organization grants me the autonomy to enact these changes, which seem to be positively embraced by everyone involved. I recognize that such adaptability might not be feasible for everyone, particularly for those in open office environments where exposure to triggers can be challenging to manage.
     
  5. arcticblueice

    arcticblueice Member

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    Aug 12, 2018
    Hey Sarah,
    I am sorry to read about your experience with this wretched disease.
    I have bilateral MD and I have been working with it full time since my first acute attack in 2017. The first thing to consider is the regimen that you are using. There is your Ménière’s and my Ménière’s and everyone can have varied results so so should consider putting together a regimen that you play around with to see what your MD will respond to. For me, I used the John of Ohio regimen for several years and take 24mg of betahistine every 8 hours. This has kept me vertigo and dizzy free nearly 95% of the time. I actually have only had a few bad days by the grace of God in 7 years. I still take 24mg of betahistine every 8 hours and a modified version of the John of Ohio regimen for maintenance. He has some brilliant posts here if you want to look them up. Another thing to consider is the stress that drives up the cortisol in your body that make you feel worse or trigger an episode. You have to learn not to sweat the small stuff and manage the stress to stay employed. You will still have rough days but you will also have good ones too. Remember that today is not forever and you don’t have to let Ménière’s disease wreck your life. Just take it one day at a time and keep trying different things until you can find your sweet spot. It will take time, trial and error but you will get there in the end. Never, never, never give up is one of my favourite Winston Churchill quotes. All the best
     
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  6. Mr. Dutchie

    Mr. Dutchie New Member

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    Jan 29, 2024
    Dear Arcticblueice,

    It is commendable that you have found relief, yet the challenge arises when the triggers of Meniere's Disease (MD) are unclear. In my experience, common triggers such as caffeine or sodium do not seem to correlate, whereas external factors like sound, temperature, and stress evidently impact my condition. This leads me to question the universality of treatment regimens for everyone. While it is encouraging to hear of successful outcomes, reliance on methods not universally endorsed by the scientific community warrants caution.

    Please do not misinterpret my perspective; it is indeed heartening to learn of your success. However, it's important to consider that Meniere's Disease can exhibit periods of remission spontaneously, raising questions about the efficacy of specific regimens over potential placebo effects or natural progression. The complexity of Meniere's Disease lies in its variable impact on individuals, coupled with a current lack of comprehensive understanding regarding effective treatments for all.

    The rarity of Meniere's Disease likely contributes to the limited funding for research and, consequently, the discovery of a cure. Adding to the complexity, the diagnosis of Meniere's Disease may overlap with conditions such as autoimmune disorders or viral infections, which might respond more favorably to the treatments frequently discussed. Therefore, while we aim to support one another, it's crucial to acknowledge that strategies effective for one individual may not benefit another.

    This underscores the importance of continued dialogue and support within our community, always bearing in mind the diverse nature of our experiences and responses to treatment.
     
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  7. Steven Wm.son

    Steven Wm.son New Member

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    Feb 23, 2024
    Good luck, Sarah. I think you are y]the youngest person I can recall to have this disease. I wish I could offer you sone advice, but you will need to find your own way. Don't let the medical community tell you "there's nothing we can do." If there's anyway you can, see a specialist who has been looking at this for many years. (I found doctor in a local university teaching hospital--I see them in May.)

    Keep at it, try things and take careful notes on what does and doesn't work for you. As someone above said, it different for each of us.
     
  8. Kevinb003

    Kevinb003 Active Member

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    Hello, Sarah. Sorry to hear you are struggling.i have been working with this since my diagnosis in late 2004/early 2005. There were some days of puking for 8+ hours at my desk unable to move. I’ve since had a labyrinthectomy and work 100% from home so much better now.

    Only advice I can give is to be fully transparent and talk to your reporting manager about you potential needs up front. More often than not ppl are understanding and will make accommodations as best they can. Additionally, if you are in the U.S. and the company does work with the federal government—even if it’s only one client—they receive a certain benefit if they hire a certain percentage of ppl with disabilities. Not 100% clear in the program details, but i believe it’s directionally correct.
     
  9. Mr. Dutchie

    Mr. Dutchie New Member

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    As previously mentioned, it is important not to allow the limitations of the medical field to dictate what is deemed possible or impossible. Just as we cannot foresee how each day will unfold, it is unrealistic to expect healthcare professionals to possess all the answers. The quest for the right specialist may prove to be a daunting task, as their expertise is often confined to existing knowledge within the medical realm.

    Regarding Kevinb003's post, I am contemplating the value of producing a comprehensive explainer video for this purpose. Such a visual aid could effectively convey the complexities of this disease and provide viewers with a deeper understanding of the challenges it presents. Should there be a collective desire for such a resource, I am prepared to create a professional animation explainer. Drawing upon my experience in crafting visual explanations, I have access to top-tier tools commonly utilized in professional productions.
    Please inform me if the inclusion of a visual aid would be beneficial in these circumstances.

    Ultimately, our capacity to work should not be contingent on whether a company receives advantages. Various nations have implemented legislation that forbids companies from partaking in discriminatory practices. Additionally, in most countries, there are regulations in place that allow individuals to keep their medical conditions private unless there is a specific law that prohibits them from carrying out certain tasks. For instance, in many countries, being a truck driver with Meniere's disease is typically not feasible due to the associated risks.

    Uncover your entitlements and elucidate your individual situation. If you have concerns that HR may be seeking to end your employment, seek advice from a corporate medical professional to find a harmonious equilibrium between your well-being and job responsibilities, and consider involving this individual as a mediator if feasible. Frequently, companies are not permitted to disregard their advice. This approach can also alleviate stress and enhance work manageability.
     
  10. apenultimate

    apenultimate New Member

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    Mar 23, 2024
    Hi Sarah,

    When my vertigo was constant, Meclizine was the only thing that worked for it for me. Diuretics did nothing, steroids injected into the ear did nothing, etc. However, the Meclizine makes me very sleepy, and it was not a good long-term solution.

    John of Ohio's (JOH) regimen (linked to in other forum threads here) helped me. The vinpocetine in particular made a noticeable difference after just one pill (for some, however, it doesn't have an effect). I've been pretty much vertigo-free for 2-1/4 years now (although allergies are bad currently, and that tends to make it a bit more tentative).

    I would edit to add--don't take vinpocetine if you are pregnant. Also, it is a mild blood thinner, so don't take it if you are taking another blood thinner (aspirin, warfarin, etc.), or if you plan on having invasive surgery soon.
     
    Last edited: Apr 4, 2024
  11. Mr. Dutchie

    Mr. Dutchie New Member

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    Jan 29, 2024
    Dear Sarah,

    I wanted to share a helpful tip that has made a significant difference for me. I recently purchased prism glasses, and I have found that they have greatly reduced the frequency of my vertigo episodes. While Utermöhlen prism glasses are typically prescribed for Meniere's disease, my doctor mentioned that there is limited evidence of their effectiveness due to the image being shifted to the left or right without a true correction. Many individuals with Meniere's experience double vision according him when they relax their eyes, indicating a need for the eyes to adjust inward to merge the two images into one. The conflicting signals from the inner ear and the double vision can trigger sudden vertigo. By wearing prism glasses, the visual information aligns more closely with the signals from the inner ear, leading to improved balance. This alignment is especially beneficial for individuals with Meniere's, as it facilitates finding physical balance through visual cues when the inner ear function is compromised.

    I have personally experienced a noticeable improvement in stability, particularly in well-lit environments while wearing my glasses. However, in dark settings where visual input is limited, the vertigo tends to return quickly. While the glasses have not eliminated my vertigo entirely, they have significantly enhanced my ability to function during the day, which is crucial for most people's daily activities.

    Although I cannot guarantee that the same results will apply to others with Meniere's, I recommend conducting a simple test by relaxing your eyes and focusing on a small object nearby. If you notice double vision, prisma glasses may be worth considering for potential benefits.

    Without the use of these prism glasses, I perceived objects both nearby and across the room as double images with a separation of up to one foot (30cm) between them. The challenge for the brain to merge these disparate images into a single coherent picture is particularly difficult, especially when compounded by the misinformation caused by Meniere's disease. Particularly towards the end of the day, small details like letters appeared blurry, often leading to frequent headaches and not being able to read or focus for long at small details.

    It is hoped that others can also derive advantages from the use of these glasses. If you experience double vision, it is advisable to schedule a consultation with a specialized eye care provider. While prism glasses may be costly, individuals suffering from Meniere's disease in the Netherlands are eligible for a full reimbursement from the tax office.
     
  12. tek465b

    tek465b Member

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    Feb 27, 2022
    Indeed its absolutely impossible to work in this condition for me, i cant even do the things i like to do and i need help for basic things at home. sadly, i am disabled(i have a hard time accepting this, i used to be very active, electronic/programming/mechanics/chemistry/music, i could wake up and start working from 7am to midnight/1am, now i barely do anything).

    Every night i go to sleep am thinking of all the things i want to do the next day, then i wake up and theres no way am doing anything in this "state".
    With some luck after 1 or 2 month i do 1 or 2 things.

    In fact its almost impossible to live like this for me right now so am just surviving with hopes something change someday.
     

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