MUCH MUCH worse since Friday's dex injection :(

Discussion in 'Your Living Room' started by HappyGrace, Apr 28, 2014.

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  1. HappyGrace

    HappyGrace New Member

    I was doing fine Sat and Sun-no issues, no vertigo.

    Then this morn I started to get vertigo (the same type I've been getting the past wk-not too awful at all), took Valium, and it went away in about 1.5 hours. Then an hour later it came BACK but with a vengeance-full out incapacitated vomiting "please kill me now" vertigo. I have not had that since before my gent injection last July. And I have never had it come, and then go away, and then come back that quick.

    It must be to do with the shot--too coincidental to get this 3 days after the shot, after not having it that bad for almost a year. I have a call in to my doc to see what he thinks about why this happened. My husband thinks maybe the shot mechanically messed w/ something in the ear that made this happen.

    When I got the shot, my doc said I may still get some vertigo for about a wk til the shot kicks in, but he did not say it would be 1000 times WORSE! Is this normal? Does anyone know?

    The doc said if the vertigo didn't go away in a wk, he said he'd give me another shot at that time, but now I'm deathly afraid to have another! I guess I'll have to wait and see what happens over the next days.

    I still feel like total crap even now but at least i'm able to be up and around a little. It actually feels like it could possibly come again-please, God, no.
  2. james

    james ''Everywhere I go there I am'' GS

    Am so sorry to hear this.Hang in there! Someone with Gent experience will probably come along soon.
  3. HappyGrace

    HappyGrace New Member

    Thanks, James. It was dex injection, not gent, which is why I was not expecting MORE vertigo!

    haven't heard back from doctor yet
  4. PleaseNoDizzy

    PleaseNoDizzy New Member

    I had the same thing happen to me about 6 weeks ago, during the week after my first (and so far, only) dex shot. I can say with certainty, the shot did NOT work for me, but we don't know for sure that it actually caused me to have a cluster of vertigo attacks. I had some other really crappy things going on in my body then that had been making my Meniere's much worse -- a 7-week GI debacle after a short trip to Mexico, and also some unexpected monthly hormone things that were happening off schedule. It created the perfect storm, for sure. My husband is an ENT (peds specialty, not neuro-oto) and agrees with my doc that the shot was just not a good fit for me. For whatever reason -- we don't know why.

    I'm considering a shunt if things don't improve in coming months. My doc wants me to address a possible MAV angle which I am doing now, but deep down I don't think it's MAV. Things just don't add up.

    Hang in there. I am really hoping we all find a way out of this mess.
  5. HappyGrace

    HappyGrace New Member

    Hi PleaseNo-i'm sorry that happened to you too! How long did the cluster last, and did it go away then?

    Did you decide the shot was not a good fit for you just based on the cluster of vertigo it brought on? Did you ever then get ANY better from the shot?

    I talked to the nurse and she's going to call me back after discussing w/ doc. Our original plan was for me to get another shot if this one didn't work, but now I am reallly leery to get another shot-I would have to say that the shot definitely brought this on. I suspect he will say it did NOT though-that I would have gotten the vertigo anyway.

    I'm in the same place as you-shunt would be next thing. I am concerned about the 20% statistic that get WORSE after shunt though! I just want SOMEthing to work. I canNOT got back to these debilitating attacks.

    My doc has never mentioned MAV, but I've been on the MAV diet a couple months, w/ not much help. I don't think MAV seems to be a fit for me either, and my doc says it is classic Meniere's presentation (although i don't trust him at all.)
  6. PleaseNoDizzy

    PleaseNoDizzy New Member

    I'm looking back at my app that I use to track my symptoms day to day. It looks like I had 2 vertigo attacks, 2 days apart, starting 4 days after the shot. There was a third day where I got REALLY dizzy -- like unable to walk dizzy -- but without the rotation sensation. That whole week was awful, with varying degrees of fullness/pressure, louder-than-usual tinnitus, and generally off balance. Once that week ended though (which was when the unrelated hormone stuff also ended) things leveled off and I haven't had another attack since, BUT in general my symptoms (aside from vertigo) have been trending toward the worse. I have maybe one or two good days a week and the rest are pretty crappy. Again I am pretty sure the shot didn't cause all this, but logic tells me it certainly didn't prevent anything either.

    Are you on any meds for potential MAV? My doc just put me on Nortriptyline but said it'll be 3 weeks before I see any results from that. I am trying my best to stick to the MAV diet as well -- a lot harder than lo-so if you ask me!

    Regarding the shunt -- the 20% statistic scares me too. In addition, my case of Meniere's (if that's really what it is) presents really unusually in that I had some minor low-range hearing loss early on, but it has since stabilized and for the most part, my hearing is pretty much ok, per the audiograms as well as how I experience it. The last thing I'd want to do is jeopardize my hearing with the shunt (or make my other symptoms any worse!). This has impacted my vestibular system waaaay more than hearing, over these 3 years. Doc doesn't know what to make of that, at this point.
  7. HappyGrace

    HappyGrace New Member

    just spoke to nurse again-doc says that would not have happened from the shot (just as i thought he would say), but that it clearly is not a good option for me-just like your husband and doc said for you. (I do have a ton of extra fullness in the ear too.)

    He wants to see me this wk asap to discuss other options, which nurse said sounds like he's thinking shunt (that's what we had discussed as a next option anyway.)

    I wonder if I should try looking at the MAV drug option? He will probably pooh-pooh that, like he did with the AVs. And I have no one else to go to that I know of in this area that treats this, and my insurance only covers him as a neuro in my area.

    I just dont know how I feel about shunt-Dr. Gacek and others think it is not a reliable option. If it weren't for the 20%, I'd feel better about at least trying it!

    plz keep us posted on how you're doing w/ the Nortiptyline!
  8. rondrums

    rondrums Bilateral

    Shit, Grace. I'm sorry to hear this.

    I haven't heard of Dex shots causing major vertigo, but some of us have very sensitive, out-of-whack inner ears, and any changes in there can cause an attack.

    I suspect that your hydrops is severe enough to warrant the shunt surgery.

    BTW, have you considered Stephen Spring? Believe me, his treatment is for real, and it's working for a lot of people.

  9. Vicki615

    Vicki615 New Member

    Oh Grace I feel terrible for you hun. I don't have any experience with any of this.
  10. james

    james ''Everywhere I go there I am'' GS

    Don't know why I said Gent..
    Since you both are thinking MAV,I would personally recommend that you go down that route before doing any shunt surgeries or anything destructive.That you don't have hearing loss PND is also a good sign that it may be mav for you.
    Give the Nori a chance to work.Make sure you have a high enough dose.You may have to increase very gradually as many people with mav are very medication sensitive.

    Why don't you ask your GP for mav meds? Nortriptiline or Amitryptiline which is what I take has helped me tremendously.
    It's worth a go.

    My neuro is not that impressed by restricting foods,so don't make yourself crazy with the mav diet.Some people do get better by finding out what food triggers that they might have.

    Good luck to you both!
  11. HappyGrace

    HappyGrace New Member

    Thanks for the sympathy, everyone. My husband just got home and we both feel not too great about shunt-reading online it's almost somewhat of a sham, plus the big thing is the 20% chance of worsening. And 60% chance of improvement is not great odds.

    I think I may have amitryptiline here-when I first started perimenopause I got a migraine once a month on first day of cycle (til i started bioidentical progesterone). Is it something you take every day for MAV? I don't get migraines now but I realize there can be "pain free" migraines.

    i still feel like another attack may be looming. I hope and pray this is maybe temporary from the shot and may pass in a couple days!
  12. yanksgirl

    yanksgirl New Member

    Please know that many here have had the shunt successfully! I did--two years ago. After about 3 or 4 vertigo attacks the week following, I have not had any in 2 years! Dr. told me this week--I 'will not have anymore'! So, we'll see. He does not know why I continue to be so dizzy with nausea and says the 'mini-spin's I've had--not real vertigo, just the feeling the room was starting to move, he has no answer for--other than I have a 'sick inner ear' and just have to do what I have to do when I feel really bad. But--no vertigo. I do take, as mentioned before an anti-anxiety drug but it's not working well or ??? Not sure what else to do about that--all due to this feeling so 'drugged/ dizzy/ and nauseated daily. Many here have had successful shunt surgeries. In fact, more successful, I think than unsuccessful. My doctor said if vertigo came back within 6 mos. you could say the shunt had failed. Otherwise it's a success. So--I'd say think about it, and go for the least invasive treatment first. But--do what you think best. :)
  13. chrisk

    chrisk New Member

    I agree the Shunt is not the best option, but its much less intrusive than the VNS or Laby, My Doctor would not let me do the VNS until the shunt failed. Plus there are some Shunt success stories. I have a High school friend who got MM about 3 years ago, knowing about my history they asked me lots of questions, she progressed to the shunt in 1 year and has been vertigo free since. I'm kind of a bit jealous, she only had one year of suffering, when I had 15!
  14. HappyGrace

    HappyGrace New Member

    Thanks. With my luck with Meniere's, I'd be in the 20% that would get worse after shunt. I think the shunt generally only helps for a couple years though anyway, in many cases.

    I'm already in the 30% that LoSo/diuretics don't help, the 10% that antivirals don't help, the 10% that dex OR gent doesn't help--it's not looking good.
  15. Vicki615

    Vicki615 New Member

    Since you were feeling better on the higher doses of AV's I would not rule them out completely yet.
  16. Angelea

    Angelea New Member

    Hi Grace,

    My previous OTO used Dex injections quite a bit. Like you, I always got a few vertigo attacks in the week after the shots, BUT when the first two worked, I gradually got better after that first week. I got a little better after the first shot, then about a month to six weeks later I got a second one and got A LOT better for 3 months. Then, the vertigo came back for me and I stopped responding to the Dex shots, despite 3 or 4 more tries.

    My doctor has a very high volume clinic and has been specializing in Meniere's for decades and his observation was that it was not at all uncommon for his patients to get some vertigo in the days following the shots. He said he didn't know why, but that it doesn't mean the Dex isn't working unless the vertigo doesn't stop after the first week or two after the shot.

    So don't give up just yet. :)
  17. HappyGrace

    HappyGrace New Member

    Hi Katniss- I was JUST reading the "success stories" in the database for inspiration/hope and read your post there! It really really helps me to know you also got the vertigo in the days following the shots and your doc has seen that happen-my doc acted like it could NOT be from the shot and it meant the shot didn't work for me. Question: did you get the second shot 4-6 wks later because the first one was wearing off, or is that standard practice for your doc to give another one then? AND did you get some vertigo after the 2nd shot too?

    Thanks, Vicki-I agree it's something to do with the AVs-higher dose works for me.
  18. Angelea

    Angelea New Member

    If I remember correctly, I just had a follow-up appt 4-6 weeks later to assess my response to the first shot. While I had improved, I was still not great (I don't remember exactly what that meant, sorry) so my doc gave me a second shot. I think it was a cumulative effect between the two shots. And, yes, I recall getting some kind of vertigo after every IT injection I ever got - between dex and gent I've had 7 or 8.

    Hang in there
  19. HappyGrace

    HappyGrace New Member

    Thanks, Katniss-that helps. You don't know what a relief it was to hear that you did get vertigo after the shots, and that it was temporary!!!! Thank you for taking the time to post about this!

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