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Thread: Omg pain!!!

  1. #41
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    Currently I'm just dizzy and haven't had the vertigo for almost a week. Relying on the meds like meclizine too much can prolong the dizziness. So I've taken less of them today. I've thought of a couple of things that might help you with the dizziness and hopefully prevent it turning into vertigo:

    It could be from eustachian tube dysfunction, which a lot of us have, allowing too much fluid to accumulate in the middle ear. That can affect the inner ear, too, which also has fluid in it, and they are connected. I have been routinely taking pseudoephedrine (generic for Sudafed) to help keep the e tubes open so they can drain. It is an icky drug which it has taken me a long time to get used to, but everyone may be different in that respect. I don't take a lot, usually one 60mg. dose a day, and I have gotten over the jittery feeling it used to give me. It does make my heart rate go up a bit, especially if I take two doses, the most I ever take in one day. I just started today with the two doses because my ears were feeling full, and I have started to feel better after the second dose. Just a thought. Target, at least here, has a very good deal on their house brand of pseudoephedrine in the 48-pack, just a little over $3. It might help you.

    Also, I think exercise helps, also taking a hot shower, or anything that gets your heart pumping faster and supplying more blood to the brain, which is trying to interpret the signals it's getting from the inner ears and eyes, which work together to maintain balance. It's hard to think about exercise when dizzy, and I would do it cautiously. For me, it's more just moving around, doing normal things like house or yard work, but nothing really vigorous.

    One more simple factor could be barometric pressure, when the weather changes. I think this is affecting me. The weather just changed here and I got that full-ear feeling and pressure across my nose. It has sort of subsided this evening. I'll see how I feel in the morning, and will try not to take the meclizine or will take less of it, will take the sudafed, and will try to remain active, maybe going for a walk. I hope some of this helps. And see if you can get a prescription for meclizine in case things get bad. It's kind of like pred in that it can really help, if you take enough, but you need to wean yourself from it to really recover and get back to normal. And get lots of rest... Avoid coffee but drink lighter forms of caffeine if you must.... I do. Or go ahead and drink coffee if it doesn't make it worse.

    The reaction from your rheumy sounds great. So now she is considering RTX; that is good. But it does take awhile to work, and a little CTX in the meantime wouldn't hurt, IMO. But I'm not the doc, and maybe your symptoms aren't bad enough for that. It really helped me when i was in bad shape. I haven't taken RTX. I hope you can get it approved. They might say to try CTX first; I've heard of that. We know the possible risks of that... as for RTX, I've heard of some worrying about it, but it seems like most people's docs just go ahead and do it and most on here have gotten good results. Good luck!
    Anne, dx'ed April 2011

  2. #42
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    Dear Nikki,
    I am sorry for your sufferings. Too much. Too long. I also think its a flare. I am glad your doc finally decided to give you rtx. For some of us it work fast so there is a hope around the corner. Hang in there.
    The feeling in the head sounds familiar to me, I had it when I had ears and sinus inflamation.
    Maybe 20mg pred daily is not enough at that point ? I took between 60-30 during flares. Dependes on how severe it was. My doc prescribed the pred in many variations like: 60, 50, 40, 30, 20, 10 or 30 for a week, then 20 for a week, then 10 for a week. There were more variations. You need to find what works best for you. Sending prayers & love ♡
    Last edited by Alysia; 10-10-2015 at 01:06 AM.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. #43
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    The Wegs impaired my balance when it took out my hearing on my right ear. It was a granuloma that developed in the inner ear i guess that caused the hearing loss and vestibular hypo-function. This made me dizzy and caused some vertigo and spinning sensation in my vision when i would turn my head quickly like when driving so it was a big concern and i didn't drive for a year after Wegs hit. I got some vestibular rehab that really helped me. I still wobble a lot when I walk and fall over if I close my eyes from loss of balance but other wise I have adjusted to this part of my "New Normal".
    Knowledge is power! Wisdom is using it to make good decisions!

  4. #44
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    Arrgh, I knew that bloody dog was waking up

    I agree with Alysia that the 20mg pred is not enough but I'm so glad your doctor has dropped the fibro angle and is concentrating on the sneaky WG.
    I hope your ears and dizzy brain feelings clear up soon, and hurry up and bring on the RTX?

    Sending some big hugs your way
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  5. #45
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    Sneaky wegs indeed!

    Nikki - I'm so glad that you'll be starting rtx soon. I think that makes sense based on the way other doctors have described the heavy hitters in the following order CTX > RTX > MTX > AZA. So, rtx would be next up on the list to knock this disease on it's a**. I hope it does a spectacular job and you feel better in no time!

  6. #46
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    I went to the ENT yesterday at the request of my rheumy so that we can say we explored all the options to pursue RTX without any hang ups. Of course, it was the usually completely frustrating appointment as going to ENT always is. he's always saying my sinus pain and ear issues are migraines.

    Really?

    So, feeling like I am stuffy is a migraine? Getting dizzy is a migraine?

    He checked for BPPV by making me lay down and turn my head, sit up quickly, lay down and turn my head the other way, etc etc. I never got dizzy ... but I did get a headache. (You think?!) He never checked my nasal passages for the inflammation ... when I suggested it he went back to migraines. I was so mad. And then, when I left, I got an email from the GP saying there was a prescription for migraine medications at the pharmacy for me that I have to take 3x day all the time ...

    Wait ... what? That sounds excessive for headaches that I don't get.

    yes. I get headaches but I most certainly do not get migraines. And, if I do get the occasional massively uncomfortable headache, it's not something I should be taking meds 3x a day for.

    In any case, I just feel more frustrated. My rheumy said that even if the ENT didn't note inflammation, that didn't mean I was out of the running for RTX. It just was an appointment I needed to have to get all my ducks in a row so I am hoping that this doesn't derail our plans.

    I am getting on a plane Sunday morning. My anxiety is not so great right now but ... I am hoping that it all goes smoothly and I get to actually go on a real vacation (sort of) and then have a smooth flight back and get on with it. This is the biggest challenge I have ever faced down, my biggest fear, and I hope that there is some sort of learning that comes from this. Like ... if I can do that, I can do anything sort of thing. Cross your fingers for me.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

  7. #47
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    It sounds like you need to upgrade to a better ENT.

    I hope your vacation is relaxing and helps quell some of the anxiety! My fingers crossed for you!

  8. #48
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    When it comes time, you'll just get on the plane and everything will be fine. A little drinkie-poo either before or after getting on, or both, will help, if you can do that.

    That ENT... I wonder if he dx's half his patients with migraines just to avoid the time and effort to really figure out what is going on? It would be nice if you could get a new ENT.

    I'm a little afraid "they" will say you need to try CTX before going on RTX. I don't know if you've ever tried it. Your doc may well be right that is isn't warranted right now and that RTX would put you on a more even keel. I hope your plans aren't derailed.

    My dizziness has really subsided in the last week or so. I hope yours has, or does, too. I'll keep my fingers crossed on all fronts.
    Anne, dx'ed April 2011

  9. #49
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    Nikki - It may be worth looking for a neurologist as a second opinion regarding migraines. Your ENT may be really off base or it could be "atypical migraines" (see below).

    I developed migraines about a year and a half ago for the first time in my life but found relief about 4-5 months into cognitive behavioral therapy (CBT) for my anxiety. It took me a while to figure out that I stopped needing the migraine medications as my anxiety improved. I highly recommend CBT to anyone with anxiety (or just needing help dealing with the stress of this stupid disease).

    Migraines * ENT Surgical Consultants * Ear Nose Throat Doctors * Chicagoland * Sinus * Joliet * Morris IL

    These “atypical migraine” sufferers may have primary complaints consisting of :
    • Dizziness/ vertigo/ recurrent BPPV (positional vertigo)
    • Ear/ head pain (often “sharp” and “stabbing”)
    • “Sinus” pressure/congestion (seen in 40% of migraine sufferers)
    • Fluctuating hearing loss
    • Ringing in the ears (tinnitus) Visual alteration
    • Gastrointestinal symptoms (cyclical vomiting/ abdominal migraine/ periodic diarrhea)


    Anne - I'm glad the dizziness subsided. I hope it stays away for good! Sending you well wishes!

  10. #50
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    Well, the atypical migraines do sound more like me. I have ALL those things! But, the ENT just said migraine and I was like "NO!" It makes more sense the way you put it. I do have a lot of anxiety right now with this upcoming trip but the problems started before I even made the reservations or had the trip in mind. So, I know it's not solely based on the anxiety. Of course, this disease brings its own host of anxiety right? not to mention my crazy ass job.
    I have made contact with a therapist to start seeing when I get back. So, that will help. There's just so much to get out of my noggin.

    I made the decision to take care of me in every way possible recently. I stepped down as a trainer at work. Something I wanted to love so much but hated every minute of. I love my job and want to love it completely again. I am changing the diet to make my body healthier so maybe I won't hate what I see in the mirror so much every day. I am facing this HUGE challenge and biggest fear of my life by taking this plane ride. And, I am going to get a regular therapist so that I can sort out all the things I just sort of keep bottled up because mental health will help overall health too.

    If I am going to be sick the rest of my life, I at least want to be happy.

    Oh ... and the universe is trying to tell me something ...
    I just got an email for a deal on british airways flights to London (where I want to go SO bad) for $823 round trip out of San Francisco.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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