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New here “My Story”...feeling hopeless.

Discussion in 'Your Living Room' started by Nicksteeleblack, Aug 15, 2019.

  1. June-

    June- Well-Known Member

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    What Anne said. If it can make change for the better, it can make change for the worse and every body is different.
     
    • Agree Agree x 2
  2. Fisherman42

    Fisherman42 Active Member

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    I’ve been taking antivirals for 4 years and my MM continues to be suppressed. I would take them a little longer to see if they help first. For me SERC didn’t help it was The AV’s and JOH. Be careful not to jump around too much too quickly you could lose track of what’s working and what isn’t. Good luck! Nice to meet you and welcome btw!
     
    • Fistbump/thanks Fistbump/thanks x 1
  3. Bonlyn

    Bonlyn Active Member

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    So, so sorry to know you have to go through all of this too. A few years after being diagnosed with menieres, it was determined I had vestibular migraines too. Something no so uncommon to have both. Since it seems you are trying everything for menieres and are still not finding relief, I would get the book recommended on the forum titled Heal Your Headache By David Buchholz. With vestibular migraines I discovered you don't necessarily have to get the traditional headache. Vertigo and sinus infections are strongly connected to some types of migraines. The book is $11on Amazon. If you want a quick look on the foods you should and should not eat with vestibular migraines the Dizzycook has a good link at the menu part of her site. Https://thedizzycook.com. Best to you, Bonnie
     
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  4. Nicksteeleblack

    Nicksteeleblack New Member

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    So due to multiple people recommending I give SERC a try I got my hands on some with a spark of good luck. I have a friend that lives in Spain, I asked if he could get ahold of some and send it to me. In Europe it’s available over the counter without prescriptions needed, you can just go in and buy it then walk out. So he went down to the pharmacy and got me 6 boxes of 30 pills each at 16 mgs. I’m gonna start with 1 pill 3 times a day and see what happens. It’s the name brand “serc” not generic. Each box is about 5 Dollars then plus shipping to get it here in 3 days It cost me about 65 dollars for everything so I’ll have 2 month supply or more if i lessen the dose. It should be getting here in a couple days.

    I also started taking vitamin C powder 3 days ago according to Solari’s Post. I started with 15 grams a day now I’m at 20 grams a day which put me at my titration point giving me loose stools. I’ve been separating the dose into 2 separate ones or throughout the day, I’m not taking it all at once. So I’m going to continue with that as well for a few weeks.

    I haven’t really gained any relief yet that’s worth noting but I’ll keep everyone updated on my progress. Thanks for all the responses and support. I appreciate it.
     
  5. AnneT

    AnneT Well-Known Member

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    Hoping they help, NickS!
     
  6. Saera

    Saera Active Member

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    Do I dare ask what ASMR is? Lol

    I can’t help that I love trash tv. And would kill to live in Orange County. So beautiful there!
     
  7. Jacqui

    Jacqui Member

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    Agreed, you need to do your own research and be wary of anything that can mess with your kidneys and liver. Some of the JOH components are banned in Australia and Canada, although probably more due to unwarranted claims about their efficacy than toxic side effects. I always buy expensive brands like Solgar and Lamberts (Europe) as I am more confident the dosages will be accurate. Tests have shown vastly different amounts of active ingredient in some supplements.
     
    • Like Like x 1
  8. Nathan

    Nathan Well-Known Member

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    Autonomous sensory meridian response.

    The underlined words in my comments indicate hyperlinks. For example, click here. By clicking on the underlined words in my previous comment you will be directed to Real Housewives ASMR edition.

    I can't help that I love ASMR. And I would kill to live in a ASMR universe.

    (When listening to ASMR headphones are recommended)
     
  9. Melc

    Melc Member

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    Hi Nick,

    I was on serc for 11 years. I started a 8mgx4. That didn’t work so I slowly increased the dosage. It didn’t start working until I increased the dosage to 32mg x4. I’m a small person and doc thought it was a high dosage but that’s what it took. You might be interested in this study.

    High-dosage betahistine dihydrochloride between 288 and 480 mg/day in patients with severe Menière's disease: a case series. - PubMed - NCBI
     
    • Informative Informative x 2
  10. Nicksteeleblack

    Nicksteeleblack New Member

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    Thank you for the info! Are you still taking serc? Or did you cure yourself through taking serc for that one at such a high dose?
     
  11. Nicksteeleblack

    Nicksteeleblack New Member

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    Also are you saying you took 32 mg - 4 times a day? If so did you just take 2 - 16 mg pills 4 times a day because to my knowledge I don’t think serc comes in 32 mgs. Thank you again.
     
    • Like Like x 1
  12. Melc

    Melc Member

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    I haven’t been on serc since I went into remission from vertigo about 11 years ago. I have no idea if the high dose of serc was what put me into remission or if the ear just burned out from so many 12 hour bouts of vertigo over the years. I still have 24/7 tinnitus, aural fullness and no functional hearing in my right ear.

    Yes, I took 32mg 4 times a day. At that time they only came in 4 and 8 mg so I took 4x8mg 4 times a day. When they started making 16 mg tablets then I took 2 tablets four times a day. It was after approximately three years on this dose that I went into spontaneous remission from the vertigo. I can’t say that it was the serc that did it, but when I was on the high dose the frequency, duration and severity of the vertigo was lessened.

    I hope the serc does the same for you.
     
    • Like Like x 1
  13. Nicksteeleblack

    Nicksteeleblack New Member

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    Got my serc from my buddy from Spain yesterday. I took 2 - 16 mg tablets spaced out yesterday. Today I’m taking 3 - 16 mg tables spaced out so today is my first full day of serc. We’ll see how this goes. Also I ordered vertigoheel which also arrived yesterday and I’m trying that as well. 1 tablet under the tongue 3 times a day. Still taking full JOH, b5/b6, magnesium glycinate, K2, ALA, Valtrex 3 grams a day, Vitamin C powder 20,000 mg a day spaced into two doses one in the Morning and one at night.
    My symptoms are the worse they’ve ever been today in regards to being off balance and equilibrium and everything not looking right.
    I’m really starting to get frustrated and discouraged. Just made a new post about my sinuses if you’d like to check it out and weigh in. Thank you.
     
  14. wendy

    wendy Member

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    I only use the vertigoheel if I feel really dizzy or off balance. I do not take it on a regular basis.
     
  15. Clare

    Clare Active Member

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    Nick, I just re-read your posts from the beginning describing your symptoms, and it doesn't seem like you have all four of the markers of Meniere's (vertigo; hearing loss particularly in the lower frequencies; tinnitus; and fullness), but it sure sounds like you have sinusitis. It also sounds like you're taking a lot of supplements. I hope you can work with the ENT on a plan to get to a definitive diagnosis. Maybe s/he will prescribe a course of antibiotics or possibly steroids to see if you get better as a way to rule out or in alternative causes. Either of those would give you results and/or information in a couple of weeks, and neither would involve long-term medication.

    I have occasional sinusitis, which is not at all related to Meniere's symptoms. If my sinuses get inflamed, a course of antibiotics is typically required to combat the infection. It's not a viral thing, so taking antiviral supplements wouldn't help with it. I take a half-dose of Sudafed (what the docs prescribed for children in the pediatric clinic where I previously worked) when I feel my sinuses getting full in order to ward off a potential bacterial infection.

    I really hope you can figure out precisely which beast you are trying to slay, and then go after it with evidence-based treatments. Believe me, I totally get the desire to throw everything including the kitchen sink at these frustrating symptoms, but with a more systematic approach you can figure out which bit actually is fixing the problem.
     
    • Informative Informative x 1
  16. Nicksteeleblack

    Nicksteeleblack New Member

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    I’m honestly thinking about just trying to stop taking everything and see what Happens. I don’t know if that’s a good idea or not though because the body needs time to build up certain supplements in your system and I feel like I’d be messing up my progress by stopping everything. I just seem to be getting worse and worse. Maybe it’s the supplements maybe it not. Idk anymore.
     
  17. Dnrpn

    Dnrpn Member

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    Don’t give up yet. I was WAY worse for a month after starting valtrex. The next two months were much better. I decreased to 1000 per day a week ago and interestingly, today is the worst day in the last two months. All is as it was before valtrex. Perhaps I need to increase back up to 2000 per day. I hate this shit!
     
  18. Nicksteeleblack

    Nicksteeleblack New Member

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    Just got back from my appointment with my ENT. I told her about the possibility of my sinuses causing my issues but she dismissed that as causing anything because my sinuses on my imaging scans aren’t that bad. She just told me to take Claritin at night, Flonase in the morning and sinuses rinses for allergies.

    She did however take all my concerns into consideration and is going to send me to see a doctor at the House Ear Clinic in Orange County for a second opinion. So I’m waiting to get approved by insurance and I’ll be calling them to set up an appointment.

    I told her about everything that’s been going on and how my hearing/tinnitus/pressure hasn’t gotten any worse it’s just my balance/equilibrium. She asked if I had been getting any headaches and to be honest I have, maybe from the JOH and supplements I’ve been taking or lack of eating but she said that some of her patients have had success in controlling their symptoms of off balance “Amitriptyline”. She said I could give it a try and see what happens, 10mg once a day at night to start. She also prescribed me “Valium” 2 mg just Incase I get vertigo which I haven’t yet *knock on wood*. Worried about taking Amitriptyline due to side effects and interactions so idk what I should do.

    Still Taking full JOH and all the other supplements besides the high does Vitamin C powder because I don’t want to put that much stress on my kidneys. 6 weeks into AV’s still at 1 gram 3 times a day and 1 week into SERC at 16mg 3 times a day. No relief yet, feel like I’m getting worse.

    That is all for now.
     
  19. Bonlyn

    Bonlyn Active Member

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    That is interesting she prescribed amitriptyline. That is a common one that they prescribe to treat mav...migraine associated vertigo. Did she mention mav?

    It was not until a few years after I was diagnosed with menieres did they say I had MAV and mm. So I have been trying to get the mav under control but it has been very difficult.

    Also if you have not already read David Buchholz book HEAL YOUR HEADACHE, you should. There is a whole chapter on misdiagnoses of sinus headaches really being MIGRAINE.

    I totally understand wanting to get better as soon as possible, for me there is such stress thinking of losing my job, etc,. I learned the hard way taking too many things at a time came at a price. I had a horrible reaction...rash, weird severe head pain and I had to stop everything to figure it out and then start from scratch. I think that may have helped set off this MAV.

    I really hope you can find the relief and peace you need. At least this doctor seemed to want to give you options. Hope you can get an appointment with the Ear Clinic soon. Best to you.
     
  20. teesdale

    teesdale Active Member

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    Same with me. I unwittingly went to 1g per day and symptoms came back quickly. 2g per day seems to be my maintenance dose.

    You may need to give the A/V's a few more months before giving up on them. Getting worse could be a good sign that the virus is fighting back.
     
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