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Is there any point in seeing a doctor/neurologist if you’re on JOH?

Discussion in 'Your Living Room' started by Brother_of_Nool, Jun 16, 2019.

  1. Brother_of_Nool

    Brother_of_Nool Member

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    I get pressured to see another doctor from time to time from well meaning friends and family members. I’ve seen several doctors over the past year, although none were neurologists. It’s my fourth week of JOH, B5/B6 and magnesium and I feel like I’m making progress. I just wish that I looked for this forum immediately after my doctors said that nothing further could be done. I’ve also just ordered Olive Leaf extract to back up the lysine. Is there any point in seeing a neurologist? I assume that the only reason to do so is to get antivirals (which seems to be an uphill battle to get prescribed) and I really don’t want to take them anyway. Is there anything a doctor could do or prescribe that would be better than what I’m already doing?
     
  2. California Sun

    California Sun Active Member

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    If you have already been told that nothing more can be done, and you are making progress doing what you are doing, IMO it would be pointless to see a neurologist or any other doctor at this time.
     
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  3. AnneT

    AnneT Active Member

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    Brother of Nool
    Where do you live? Maybe someone here can suggest a good otoneurologist or neurotologist in your area.

    My understanding is that the steroid injection is sometimes temporarily helpful. If medications and supplements don’t get you vertigo-free within a few months to a year... if your vertigo becomes debilitating (affecting work, quality of life, driving etc) there are definitely other treatments that a good Menieres doctor can offer you. It may take some time and trials to find the right doc (I’ve seen 5 specialists over about 10 years) so keep on it.

    Don’t let the disappointing doctors prevent you from finding the ones who are worth their weight in gold.
     
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  4. Bonlyn

    Bonlyn Active Member

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    Yes, I agree with Anne. Don't cut all contact with mainstream ent doctor because you may have severe episode that you want the drugs they offer. I am experiencing that right now, presently having severe attacks often and my ent gave me two steroid shots in the ear. Though still having episodes, the steroid shots seem to help a bit.. I try to do things as holistically as possible with JOH etc but sometimes I seem to need something more to function.
    Also I didn't keep up with the neurologist, so will be treated as a new patient and then by the time you can get an appointment, you are (hopefully) over it all. Best to you. Bonnie
     
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  5. Brother_of_Nool

    Brother_of_Nool Member

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    Thanks all. Since I stopped eating gluten, I haven't had any vertigo attacks. So, I think that I have cochlear hydrops rather than MM. I'll keep on with my regimen, but will visit a doctor again if I develop vertigo. Hopefully the JOH will prevent it from progressing to that point.
     
  6. tmcmahon2

    tmcmahon2 Member

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    Cochlear hydrops is another way that some doctors refer to Meniere's.
     
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  7. Brother_of_Nool

    Brother_of_Nool Member

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    My doctor didn’t use that term, but I wish he had. He said that I had Ménière’s, and even though I didn’t have vertigo, it was inevitable. I prefer to think that I have cochlear hydrops, and that the vertigo isn’t isn’t a forgone conclusion.

    As always, I’m not putting down my doctor. Even if he had given me all this information a year ago, I wouldn’t have known what to do with it.
     
  8. Bonlyn

    Bonlyn Active Member

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    Hello,

    Since I have been having attacks more regularly and can't really go into work have been reading these threads more closely. :D

    I read in your post here that you are getting the Olive leaf extract to back up the lysine. Since this statement can be ambiguous, just want to make sure you read John of Ohio's post from February 13, 2018 about taking lysine and OLE together. (You probably have, but just in case.) Bonnie
     
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  9. Brother_of_Nool

    Brother_of_Nool Member

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    Nooooo, I didn't see that. Thanks for calling my attention to it (in such a tactful way). I will re-evaluate if/when I'll take them.
     
  10. Jimii

    Jimii Member

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    After 18 years I finally started having Vertigo attacks. I largely ignored the Meniere's.
    Now I can't. Meclizine (as needed, not every day) has helped me stay vertical during the last two attacks.
    I am sure without it, I would have been on the floor.
    After my first attack, I called to get an appt. 3 1/2 months to get in. I have an appt. July 10th.

    Jim
     
  11. June-

    June- Well-Known Member

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    The answer to your original question is - it depends on the doctor and it depends on whether you are open to learning.p more or think you have all the answers you want or need.
     
  12. Brother_of_Nool

    Brother_of_Nool Member

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    I felt that’s what I was asking in my original post. I wanted to know if I was doing everything I could be with JOH. I guess I was looking for a story like “I was doing ok with JOH, but found a good doctor, and now I’m much better than I would have been with just JOH”. I’m not angry with the doctors that I saw (I know the frustrations of being unable to fix something, despite best efforts). I’m grateful for the diagnosis that I got because it led me to this site, but I’m not eager to meet with another doctor, since they’ve all done and said the same thing since the first diagnosis.
     
  13. June-

    June- Well-Known Member

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    Have you taken antivirals? They address the virus, if that is the origin of your problem. If you take antivirals you dont need the supplements aimed at viruses. Antivirals are a quicker route. Not all doctors will prescribe them though. Sometimes the family dr is the best chance, sometimes an ENT will prescribe them. I personally do not subscribe to the kitchen sink approach although if i could not get antivirals such as acyclovir, famvir or valtrex, i probably would try lysine. The problem with the kitchen sink is that you never really know what worked and you never really know what is causing side effects if you have any.

    The other thing that helped me was allergy treatments. They take a long time, years, but they also helped me. The dr i saw who did both was Dr Derebery at House Ear in Los Angeles. It was my family dr who first prescribed acyclovir though so that i knew antivirals were the key for me.

    Good luck! I expect you will find something that works for you.
     
  14. June-

    June- Well-Known Member

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    Also, you said neurologist. Do you suspect migraine? That is a whole other approach which is significant for some people. I dont have that so i cant speak to it but many here can.
     
  15. California Sun

    California Sun Active Member

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    Thank you for mentioning this, as I am considering trying some of these things. I had not seen JOH's post but looked it up.

    When I try something new, I prefer to try one thing at a time for at least a couple of months before before adding something else or moving on to something else. My feeling about it is that doing it this way will give me a better idea if what I am doing is helpful. If I am doing multiple things at one time and get a good result, I'm not going to know which thing was helpful.
     
  16. Brother_of_Nool

    Brother_of_Nool Member

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    I’ve never taken antivirals, never given the option. I was only told that I should adopt a low sodium diet. When you say antivirals are the quicker route, do you feel that both lysine and antivirals are equally effective, lysine just takes longer to reach the same results?

    I don’t, but I had read that people felt that they were helpful (I had actually meant to say “Neurotologist”, but autocorrect changed it). Alert:boring story;). Part of the reason I asked the original question was because a few months ago, relatives were on vacation and the subject of Ménière’s came up. They were given the name of a doctor, and they passed his name on to me - but I declined to see him. Recently, I was relating to my relatives that I had read some threads about people seeing Neurotologists, and was quickly reminded that I was told months ago about one, but dismissed it.

    That’s good advice. I’ve ignored it in the past month in order to make up for lost time, but I will start to heed it. I’m having some side effects that i’d like to get past before starting the Olive Leaf.
     
  17. June-

    June- Well-Known Member

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    Antivirals are quicker. JOH might weigh in here but i think the antivirals kill it, the lysine just creates an inhospitable environment and encourages the virus to give up or something along those lines. If you can get the antivirals i would go that route. as long as you dont have any kidney or liver issues they are pretty benign. Diretics and low sodium help some, never did a darn thing for me except make me faint.

    btw, my well respected neurotologist had told me there was nothing more he could do for me (i was already permanently deaf and had no balance in one ear before I got CH in the good ear so they didnt want to operate). My family dr knew this is where the ents were at, and only then did she feel like she could do a little experimenting without stepping on toes i think. She gave me the antivirals when i told her some people on the internet claimed they worked. I was not really begging for them, just through it out. She saw no harm it giving them a try and did not see them as very risky. They rx them for cold sores and shingles and chicken pox ... when they worked but not 100%, i went to Dr Derebery in LA because she was known to rx them sometimes.
     
    Last edited: Jun 18, 2019
  18. Brother_of_Nool

    Brother_of_Nool Member

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    I was thinking about going that route. I used get cold sores terribly in the winter until I started taking lysine a few years ago. I figure if things don't progress then I could see my primary physician when I go for my yearly physical and ask about antivirals. However, I was under the impression that herpes has no cure; that everything (including antivirals) is done to suppress it. Here's the post that I'm basing this on…

     
  19. June-

    June- Well-Known Member

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    So suppress it for 10 or 20 years, like with chicken pox, mono etc etc. They are herpes viruses. No one knows which one (s) of the human herpes viruses are involved with menieres, they just know the antivirals cure some people if taken long enough in sufficient dose. I havent taken antivirals for years. I have not had a recurrence.
     
  20. Brother_of_Nool

    Brother_of_Nool Member

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    That's great! So you don't have to take supplements anymore? How long did you have to take the antivirals for?
     

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