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SIDE EFFECTS OF THE TREATMENT FOR MENIERE'S DISEASE

Posted , 8 users are following.

patrick12162
patrick12162

I was diagnosed w/Meniere's several months ago.  I went to a specialist and the treatment he put me on was Scopolamine Transdermal Patches.  I wear it for 3 days and add a new one.  I'm also on a water pill (Hydrochlorothiazide).   They have worked as far a checking my vertigo and nausea but I have severe dry mouth.  So bad it is just below the vertigo and nausea.  It is awful and I can't go on like this.   I tried to get off the patch and 36 hours later I got nausea enough I had to go home from work.  I tried to take the water pill every other day and a vertigo attack hit me yesterday causing me to miss another half day of work.  

    I have tried EVERYTHING for dry mouth and nothing helps.  My pharmacist today told me I've got to get off the patches.  It will start to effect my joints and I'll have problems urinating and eventually have a hard time swallowing.  

    He suggested I try Lipo Flavonoid for ear ringing.  Take two tablets 3 times daily.  I took my first two tonight and he said to put on another patch and after 3 days, take it off and hopefully the Lipo Flavonoid will be taking affect. 

    I asked him about Betahistine because I see several patients taking it.  He said it was a histamine and would dry up fluids like the patch does.  Do any of you taking Betahistine have any dry mouth?

    I know as many of you, sure wish they would come up with some cure for Meniere's and very depressing to know not a lot you can do to deal with it.

    I'm going to try some other supplements I've seen on the chat room and hope this will help. 

0 likes, 13 replies

13 Replies

  • david2salsero
    david2salsero patrick12162

    Posted

    Hi Patrick,

    I’m sorry to hear about your MM issues. It’s a frustrating disease to say the least. Keep at it though. I ditched the water pills and opted to control sodium through diet. It’s a hard task, but I want to avoid medication where I can. I take betahistine 36mg twice a day. I don’t know if this really helps, but the idea is to relieve ear pressure. It works for some and not for others. My MM has progressed from hearing loss in my left ear to slight episodes of vertigo. When I feel a vertigo episode coming on—I can tell usually from my hearing—I take meclizine which is over the counter an hour before. I’m using natural patches called MQ to prevent vertigo. I exercise to help with blood flow. Again, I’m convinced if we can relieve pressure then we can avelliate the symptoms.

  • christine_35821
    christine_35821 patrick12162

    Posted

    Hello Patrick. Yes I take betahistine and I get a dry mouth at night. I hadn’t actually associated it with the betahistine but it could have been because I was on a higher dose than previously. I am in the process of cutting down again to 8 mg x3. I’ll monitor this and post again. Maybe others have experienced this too. Having said all that it’s not so bad that I can’t lead a normal life free of vertigo. It’s worth trying isn’t it?  I have only had Meniere’s a year and was very unstable for the first 6 months and betahistine doesn’t take full effect for a few weeks. Good luck. 
    • patrick12162
      patrick12162 christine_35821

      Posted

      Christine - I've tried everything for my dry mouth and nothing works.  I did last night try XyliMelts are kinda a lozenge that you put inside your mouth at night when going to bed.  They go on your outside gum and you just let them dissolve during the night.  Like I said....first time was last night so not sure if I can say it is worth it but impressed the one time I put them in.   I found them at Rite Aid.

    • patrick12162
      patrick12162 christine_35821

      Posted

      Christine - just wanted to follow up with you about your dry mouth at night.  Last time I messaged you I had tried XyliMelts that you put in your mouth before going to bed.   I had only tried them one time but now that I've had them in every night for 5 nights, they are the ONLY thing I've tried that really works for dry mouth.  So if you are still having dry mouth at night when going to bed, you might give these a try.  You put them on each side of you mouth next to your gum.  They will dissolve during the night and keep your mouth moist and kinda have a mint flavor.  They are made by OraCoat and I got them at Rite Aid.   I tried Walgreens but they didn't have them.  Just looking at my box and the flavor I have is Mild-Mint.  If you can find them, might give them a try.

    • christine_35821
      christine_35821 patrick12162

      Posted

      Patrick - thanks for the post. I lost your other one and couldn’t remember the name of the XyliMelts. I had already ordered on line a tube of ointment which had good reviews but it’s incredibly messy to apply to your gums. It works for a few hours but is not pleasant as it makes me gag!  So now I will get some XM’s and let you know. Having said that I finally got a glimpse of what a proper night’s sleep feels like. 

    • patrick12162
      patrick12162 christine_35821

      Posted

      I think you'll like the XM's.   They just dissolve in your mouth all night and a pleasant mint flavor.  I tried a gel made by Biotene and it didn't work all that well for me either.   I had to put on my tongue and then coat my mouth with my tongue.  It didn't seem to last long.   Good luck and keep me posted.

  • NeddyO
    NeddyO patrick12162

    Posted

    I hope you have had an MRI scan to eliminate other possible causes for your symptoms.

    Betahistine is a drug specifically designed for Meniere's and apart from some possible gastric irritation (which is easily managed) it is remarkably free from side effects. As a life long hay fever sufferer I get dry mouth from the antihistamine (Zirtek) which I am able to manage when bad with salivary stimulants. When on betahistine my mouth symptoms do not get worse so I do not think you need worry on that score.

    High dose (64mg tds) Betahistine has certainly been my salvation. It takes a month to become fully effective and you should remain on it until you have been free of attacks for at least 5 months when a slow wean off is advised.

    If as I suspect you are in N America you will need a personal named  prescription which a specialist pharmaceutical laboratory will then make up for you.

    Your pharmacist is right about the patches - they are merely treating your symptoms, not doing anything for the main problem,

    • patrick12162
      patrick12162 NeddyO

      Posted

      NeddyO - Yes I had an MRI done and several other test my ENT put me through.  When I went for the results, they said I tested negative for Meniere's but since I have the classic symptoms, he said I have Merniere's.  I may have to see another ENT because this dry mouth issue is horrible!   I contacted my ENT and asked him if there was anything I could take that I wouldn't get this severe dry mouth.   He said "No".   I'm going to wear my patch until Monday and try going without it and taking the Ear Ringing pills my pharmacist recommended.  If I can find another doctor who will prescribe Betahistine, I'd like to try it.

  • carol83
    carol83 patrick12162

    Posted

    dear patrick 12 i have taken bestahistine 16gm    3 times a day recently up the dose to an extra tablet  as meneirs kicked in again after 5 years  also take prochlorperazine twice a day not had any sickness problems do have fulness in head tinnitus and vertigo but scince taking extra tablet is deffinately lessoning it somewhat ,had no side effects.have taken these tablets for 5 years now, i find stress does bring it on especially if i go to dentist ,hope this helps.
    • patrick12162
      patrick12162 carol83

      Posted

      Carol83 - that is encouraging that you don't have side effects from it.  I also take a water pill and that probably adds to the chronic dry mouth I have.  I have to find something to help keep my Meniere's in check and get rid of the dry mouth.  Food doesn't taste good and my tongue is raw rubbing up against my teeth with no lubricant.  I'm from Kentucky and 66 years old.  I never heard of Meniere's until this happened.  I sure wish I had listened to my wife and cut back on salt a long time ago!

  • tanney
    tanney patrick12162

    Posted

    Hi Patrick. what dose of diuretic (water pill) are you taking?  Diuretics are normally effective in controlling MD symptoms when administered in correct dosage.  Most ENT start patients on 25mg and will increase to 50mg if necessary.  Have you tried to eliminate salt from your diet?  Have you eliminated caffeine and alcohol?  I think it is the patches that are drying out your mouth.  Has your ENT suggested steroid injections to inner ear as a way to control symptoms? 

    In the USA you will need a prescription for the Betahistine and you will need to have it filled at a compounding pharmacy.  Betahistine is not approved by the FDA so your insurance will not cover it.  Cost for 90 days supply of 16mg taken 3x/day is approximately $200 depending on where it is compounded. 

    My suggestions are the following....

    1.  stop the patch

    2.  restart the water pill....make sure dosage is accurate

    3.  eliminate salt, caffeine, alcohol as much as possible

    4.  start Betahistine

    5.  if above does not stop vertigo after a month consider having steroid injection

    6.  if all of above still do not stop vertigo, ask ENT about Gentamycin injections.  This will stop the vertigo.  This has possible adverse side effects....research it.

    Good luck.....

    • patrick12162
      patrick12162 tanney

      Posted

      tanney - thank you for the info.   Very informative and one of the reasons I got on the chat room.  My water pill is Hydrochlorothiazide and I'm taking 12.5mg.   Actually, my general doctor is the one who prescribed it and not the ENT.  Diuretic may be the same thing.  I tried to get off the patch a few weeks ago and first day I was OK.  The 2nd day about mid-morning I started to feel nausea and by mid afternoon I had to leave work and go home.  I put the patch back on.  On the water pill, I tried taking it every other day and a few days of doing this, I started to get vertigo and missed work again.   I'm back on the water pill again.  

          I'm taking Lipo Flavonoid and two pills, three times a day.  Today, I took the patch off again and going to see how I do.  It seems I'm the only one who is wearing a patch and everyone is taking Betahistine.  I contacted my ENT and asked him if there was something besides the patch I could take that wouldn't give me the dry mouth and he said "NO".  He never mentioned steroid injections or Gentamycin injections.  I think I need to go to another ENT.  I don't believe there is another one in my home town and I may have to try Louisville.  

          On salt, I have cut back but not eliminated it completely from my diet.  I was a salt-a-holic before and know this is part of my problem.  I watch my caffeine and never have used alcohol.  

          I've got my fingers crossed that without the patch I can not get nausea or vertigo.  

          Again, thank you, you've been very helpful and I really need to try and see another ENT.

  • Willow4
    Willow4 patrick12162

    Posted

    I have tried Serc 3 separate times which isn’t available in the states but thought I would try it.  It was no help.  I was placed on dyazide which does help with a 1500 mg max Sodium diet.  But 3 years ago I had the Sac decompression which lasted 3 1/2 years.   Then I started having symptoms again. Started slow then went severe.  I have been out of work since 8/22 and have been told another 2 months at least.  I had a second Sac decompression on 11/30 which ended with a CSF leak due to the dura being effected.  I believe it would of been successful like the first if not the complication of the CSF leak.   I was told I should never go off of the dyazide because it will protect it from going into my left ear.  I also had success with a steroid injection in my effected ear.  So as I ramble on here. Try the diet 1500mg of sodium, ask for dyazide, Valium for extreme Vertigo, possible the injection and promethazine at night so you can wake up not as nauseated.  Lots of meds but I couldn’t function without them.   Good luck to you! 
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