Discussion in 'Your Living Room' started by njspingirl, Jan 11, 2012.

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  1. Intrepid

    Intrepid New Member

    Shuddup :D :D
  2. Imnoscientist

    Imnoscientist New Member

    This must be incredibly frustrating for you. MM, migraine and Panic disorder - all these conditions share symptoms in common. Teasing out whether various symptoms (eg vertigo) are a result of the Meniere's, migraine or panic disorder and therefore how to treat them is very difficult. I'm not sure of your entire history but there may even be misdiagnosis in there. I saw 'panic disorder' on my GP history one time and scratched my head - as far as I'm aware I don't have that condition, I've certainly never been told I do or complained of it. But I do use Valium so I think one of the GPs just assumed 'panic disorder' and put it in the notes (I've since had it removed). Anyway, the treatments for the symptoms of MM, migraine and panic disorder can also overlap - which just makes it even more confusing.

    As discussed in previous posts I think you will get a lot of benefit from trying the migraine diet and lifestyle modifications. At the very least they are very healthy! Others have mentioned counselling or cognitive behavioural therapy - I think those would also be very useful in managing your anxiety.
  3. njspingirl

    njspingirl unilateral menieres..had vns and gent injections

    Imn, I think alot of folks here have an overlapping diagnosis. My panic started from the menieres. I think it all goes hand in hand. Allergies on top of it now. My neurotologist believes its allergies, migraine and neck problems. I do find, that when my neck doesnt bother me and I can stand up tall , I am back to normal. Except when the weather changes. Then the pressure in the head starts. We did rule out the menieres at this point. My ear is dead. I am starting the vit B2 and magnesium as he suggested and Nasonex. Eliminating things from diet. We'll see what happens there. He did not want to give me an RX for migraine medicine. YET. I am very sensitive to meds. So, we shall see .
    I have tried behavioural therapy once. Seems that my first session was repeated over and over again for 4 months! lol
  4. Imnoscientist

    Imnoscientist New Member


    Sounds like your neurotologist is pretty switched on. Good to have that support.

    Like you I'm sensitive to weather changes, specifically changes in barometric pressure when a summer storm is brewing. But, only when my migraine threshold is low. When I'm well I can weather the storms :)

    It will be great if you can get well without meds - I am very pro medicine (certainly not afraid of it) but ideally, we all should be on as few meds as possible. And as you're med sensitive hopefully you won't need them. If you find you get relief from the diet restrictions you can start slowly adding things back in and see what happens. Good luck - I have to confess I've never noticed many dietry triggers for myself - unless my threshold is low in which case caffeine and red wine are not good. Generally you will know pretty quickly if something is making you worse.

    From the tone of your posts it sounds as if you have a lot better control of the anxiety than in the past - whether that is from the CBT or Xanax that's a good thing. Personally I find just having some Valium in close proximity is very reassuring, just knowing it is there if I need it.
  5. Nathan

    Nathan New Member

    I would love to be able to rid these hideously intertwined, complicated & crippling symptoms from those who suffer them.

    Do you remember when you were young, when everything seemed so simple? Maturity, responsibility, the desire to remain diligent & sorted can be exhausting enough. Throw symptoms which influence the basics which we rely upon to function.. & it all seems so impossible at times.

    Hope you find relief soon, njspingirl.
  6. njspingirl

    njspingirl unilateral menieres..had vns and gent injections

    Thanks Nathan :) I am going to think positive thoughts and eliminate all the negative shit in my life right now. I am sure that will help.
  7. redwing1951

    redwing1951 New Member

    I am wondering, you said you still have the spins after you have had gent shot. How many shots have you had? Maybe you need another one to kill the rest of the celia in your ear that is allowing singles to the vestibular nerve? Just a thought. I too hate it every time I have to go over meds with the docs once it is on your record unless it changes why can't you just say NO Change....sorry you are having a rough time right now. Hoping things change for you soon...
  8. njspingirl

    njspingirl unilateral menieres..had vns and gent injections

    thanks redwing. I had 5 shots . It is DEAD.. lol we determined that on tuesday. I hate those goggles. :)
  9. savingdogs

    savingdogs New Member

    I'm a Meniere's patient and also take Xanex. They have me on a low dose .25 mg daily unless I have vertigo attacks, when I would take .50 mg. My doctor says it does not prevent vertigo but instead makes the patient better able to tolerate it.

    I do have anxiety and panic issues as well as Meniere's and Migraine associated vertigo, the medication really helps me. I don't feel guilty or worry about any addiction. I know if I felt better I would be able to wean off the meds and so I'm not going allow myself to feel bad about it. I just take it as sparingly as I can.
  10. hollymm

    hollymm Me, 'in' a tree.

    Boy! Reading all these entries is making me re-think my dosage. My Zanax comes in 1mg tablets. I can take up to 4mgs a day. Most of you that talk about your dosages are talking about .25 or .5 at the most. I've been trying to cut down since this topic has started. I never have taken more than the 4mgs in a day and I usually only take two a day but that's still 2mgs! The screaming tinnitus has been much worse than usual but I'm trying really hard not to take meds for it. Right now my head is screaming at me in multiple tones plus the whooshing noise and it's difficult to write - my words keep getting confused in my head and I sit here trying to get the thought back. I hate this! I hate it so much - I'll never be "Holly" again and I miss her so much...
  11. njspingirl

    njspingirl unilateral menieres..had vns and gent injections

    Holly, I dont know where you are...but we have freaky ass weather here in NJ. Tinnitus is going wild and of course the headaches n neck pain. I wouldnt worry what dose you take, as long as you and your doctor knows. You have a good reason for taking it. That was one thing I felt quilty about. "Should I take it, or should I wait"?? grrrr it drove me nuts. I have been alittle more at ease now that I spoke to both of my doctors.
    If you need it.. take it . My neurotologist asked me a good question when I was there last week. He said to me.. "If you had high blood pressure and you took meds daily to control it, WHY would you stop taking it ONCE you felt better"??? hmmm... "if it helps you get thru the day, TAKE IT".
    I know bp med is different then xanex.. but we take it for a reason. I think we question ourselves because there is such a bad rap for abuse. If your not buying it out on the street corners or stealing from your hubbys wallet to buy it.. lol then use it as you need it.
  12. Intrepid

    Intrepid New Member

    NJ - I saw your post about how you crochet, knit and make many lovely items. I wonder if you work on your crafts many hours a day because if you do, think of how you hold your head, neck and upper body. The back of your neck is in an extended postion while the front of your neck isn't. I think you said you've been doing this as a job for some time now so your muscles are probably pretty out of whack unless you are exercing your neck and upper body on a regular basis.

    I say this because the times I had the worst vertigo, instability, dizziness and pain, was when I spent many months nursing my children when they were babies. It was an unnatural position for me to keep my head twisted and looking down to the left and the right. It messed up my neck big time and I had lots of spins. A physical therapist told me that because I had the tendency to "hold" tension in my neck and shoulders (some hold tension in their stomachs or lower back or clenched jaw etc.), the additional strain was causing these symptoms.

    I am not suggesting you do not have MM/MAV or anything else your specialists have told you, just providing a heads up (pardon the pun!) on how your posture over the years could be contributing to your symptoms.
  13. Trinity

    Trinity Bilateral Menieres 20 years, 24-7 symptoms,

    I will repeat what I put in an earlier post. My Psychiatrist told me that Meniere's is extremely difficult to deal with and I need to look at my meds as my friend and not beat myself up for taking them. She said you don't look at it as an addiction. You look it as a way to cope with this misery and get through the day in the best possible way you can. There are, ofcourse, additional things you need to do like positive thinking, eating health and exercising when you can.
    Stressing yourself out is much worse for your body then taking the meds your doctor prescribed. Carole
  14. rondrums

    rondrums Bilateral

    This is obviously a long thread, but I'll add my two cents.

    Xanax is intended for reducing anxiety, which anyone with Meniere's probably has. But it's also a CNS (central nervous system suppressant), so it can calm down the balance nerve in your inner ear when it's acting up. Valium is even better for calming down vertigo and dizziness, but Valium makes you really dopey. Xanax doesn't make you so dopey. You can take it and get through your day without being a zombie.

    Xanax is addictive and habituating, which means you can't take it for a prolonged period of time and then just stop without withdrawal symptoms, and your dosage will necessarily need to increase over a period of time.

    I've been on .25 mg twice a day for seven years. That's a pretty low dose. My doctor jokes that I take the lowest dose of any of his patients, many of whom take 2 mg or more a day. On bad dizzy days, I take one or two more throughout the day. It works for me. It reduces the dizziness as well as the mental aggravation of being frigging dizzy all the time.

    I haven't increased my dosage significantly over the years. I probably should, but I hate taking this crap. But I hate Meniere's worse. The stuff helps. I don't see any point in worrying about taking an addictive drug if it helps alleviate your symptoms. What's the alternative? Being so frigging dizzy that you can't go to work.

    Bless all,
  15. njspingirl

    njspingirl unilateral menieres..had vns and gent injections

    I think that is a very big part of the problem. I had alot of fun doing the 2 craft shows. BUT, it was alot of work at the felting machine.. HOURS on end. Also, crocheting at night.
    I use to work out 4 days a week. I miss it so much. I did that for 8 years and never missed. I was addicted. lol
    Since my gent shots.. I guess Im just to afraid to do that kind of stuff now. I hate the way my body looks since I stopped.
    If I could get up the courage to walk into the gym again,, that would probably help me ALOT.
  16. njspingirl

    njspingirl unilateral menieres..had vns and gent injections

    Same here with my doctor. He said most of his patients are on 2mgs or more daily. I tried valium YEARS ago.. I forget what the dosage was. But, it made me feel like a zombie. Xanex works well for me.
  17. hollymm

    hollymm Me, 'in' a tree.

    I'm so glad I was prescribed with zanax so long ago (8 yrs). It's worked well and so I haven't had to keep trying different drugs to find the 'right' one. I know I'm addicted and would have to ween off of them. Good news is even after all these years, I've never had to go over my daily dose (4mgs) to take care of the anxiety and calm the tinnitus. I don't have the spins near as much as I used to but I think that's more due to burnout than zanax.

    I still have the multiple days where I sleep a lot but I think it's more from the strain of overload from using my other senses to compensate for the AIED.

    Now, if I could just find the med that would stop the back pain (yes, I do exercises), I'd be a lot more active! Even the pain theropy meds that I'm on don't work on that but then, if I weren't on the meds there's no telling how bad that pain may be!

    I too wish zanax wasn't a 'street' drug. It's got such a nasty connotation to it - as do the pain meds.
  18. Intrepid

    Intrepid New Member

    You won't know unless you try. Take your husband with you the first few times.
  19. hollymm

    hollymm Me, 'in' a tree.

    Today is a bad day on the tinnitus front. I'm just about at that point that I need to calm it down a bit. Had to go out today so I think the outside noises got to me, as usual.
  20. njspingirl

    njspingirl unilateral menieres..had vns and gent injections

    Today it hasnt been bad for me. My neck was stiff this morning and ringing in the left ear. With the rain, it usually gets louder. I have to say, it has been one of my better days. :) I ran to home depot to get my mask. Came home and started soaking my gourds. I keep busy scrubbing away at them and didnt really think about anything except to get them cleaned! They have been drying now since mid Oct.
    I did notice a few quick spins while driving, BUT, rain hit within mins. Then I was fine.
    My head is not pounding like before and I dont know if Its wishful thinking or maybe the b2 and magnesium is kicking in.
    Hope you feel better soon Holly

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