Very Sad, and Very alone -my dizziness is back

I was doing so well and then bam, here I am waking up to that same dizzienss. I thought I would be better equipt to deal with it, but NO, i feel scared, sad, and frankly really really depressed. My husband does not even want to hear it anymore. He is frustrated with my constant talk about my issues with this. My doctor wont ever call me back and I cant even get another appointment with him. My friends all deserted me. And NO ONE Listens to me. I can hardly take care of the kids because i am always worried about this condition. I honeslty feel like a useless human being who can not take care of her crap. I still feel like I cant believe MAV is the cause of 24/7 dizziness. I mean isnt it suppose to be intermittent? I also cant help but think this has to do to the thinning of my superior canal which is on the same side. I know my doctor says its not but I find it coincidental. I feel like I have no one to talk to and really I just want to crawl in a hole and cry my life away. This is just too hard for me to handle and i cant imagine living the rest of my life like this. I mean what kindof F=== life is this. meds, dizziness, therapist. I just want to be my old self and i realise that will never happen.

I also had a very deep tissue massage yesterday and after i felt dizzy. Do you think this could be the cause of this? I just read another post where someone mentioned that? It was a pretty rough massage.

First–NOT ALONE…people are listening, and we do care. So does your husband, but he’s frustrated too. He wants to “fix it” but how? He is as frustrated and lost as you are in this, and he may have lashed out incorrectly, but don’t take it personally–he doesn’t mean it any more than you mean to get angry when there just isn’t anything left inside you but anger because you’ve cried yourself dry of tears. :frowning: He wants to help you as much as you want to help yourself, but just as you’ve seemed to hit a wall–so has he, and when you don’t feel well, he is frustrated that he can’t help you while also frustrated that you aren’t up to par to help him.

Second–You THOUGHT you were over this because you’ve had GOOD days recently!!! That means that you haven’t been dizzy 24/7 lately, and that’s a GOOD THING!!! Today isn’t a good one, but were you dizzy yesterday? It is worse when you’ve felt better because when you feel bad, you realize how far from “good” you really are!!! But that you have good days is a HUGE STEP IN THE RIGHT DIRECTION!!!

I have had a tough couple of days too, and I think they’ve seemed worse to me than usual because I felt so good for almost two weeks prior to these three days. For a little while there I got really down about the fact that I was feeling so awful (in my case I got hit with horrible nausea and the follow-up headaches this time–it started Friday night with what I call a “balance slip” where it felt like someone pulled the ground out from under me while I was standing still–I haven’t been on kilter since). But I remembered too that I had felt like this nearly every day for 18 months STRAIGHT not too long ago. I feel bad right now, but I WILL FEEL BETTER AGAIN SOON–which I wasn’t sure I would ever be able to say again back in October before the meds started to actually seem to work a bit!!!

You are angry with your doctor that you can’t get an appointment–but I would bet money that your doctor has read your message and knows (not that it makes you feel better at the moment) that you will feel better when this particular episode runs its course. I don’t recall what meds you are on, but we all have to wait a few months for it to truly “sink in” to our system and make a lasting difference. I’m only 4 weeks in. I’ve been told it takes as much as 6 months on a maintenance dose of topamax for it to be its most effective!!! At 4 weeks I’ve noticed a huge difference, even though I’m not “cured.”

Let’s look to our future…how far into your “sort of working” meds at this point? What success have you seen so far? How many GOOD days have you had recently??? Tell me the good stuff that has happened lately!!

— Begin quote from "dolfnlvr"

First–NOT ALONE…people are listening, and we do care. So does your husband, but he’s frustrated too. He wants to “fix it” but how? He is as frustrated and lost as you are in this, and he may have lashed out incorrectly, but don’t take it personally–he doesn’t mean it any more than you mean to get angry when there just isn’t anything left inside you but anger because you’ve cried yourself dry of tears. :frowning: He wants to help you as much as you want to help yourself, but just as you’ve seemed to hit a wall–so has he, and when you don’t feel well, he is frustrated that he can’t help you while also frustrated that you aren’t up to par to help him.

Second–You THOUGHT you were over this because you’ve had GOOD days recently!!! That means that you haven’t been dizzy 24/7 lately, and that’s a GOOD THING!!! Today isn’t a good one, but were you dizzy yesterday? It is worse when you’ve felt better because when you feel bad, you realize how far from “good” you really are!!! But that you have good days is a HUGE STEP IN THE RIGHT DIRECTION!!!

I have had a tough couple of days too, and I think they’ve seemed worse to me than usual because I felt so good for almost two weeks prior to these three days. For a little while there I got really down about the fact that I was feeling so awful (in my case I got hit with horrible nausea and the follow-up headaches this time–it started Friday night with what I call a “balance slip” where it felt like someone pulled the ground out from under me while I was standing still–I haven’t been on kilter since). But I remembered too that I had felt like this nearly every day for 18 months STRAIGHT not too long ago. I feel bad right now, but I WILL FEEL BETTER AGAIN SOON–which I wasn’t sure I would ever be able to say again back in October before the meds started to actually seem to work a bit!!!

You are angry with your doctor that you can’t get an appointment–but I would bet money that your doctor has read your message and knows (not that it makes you feel better at the moment) that you will feel better when this particular episode runs its course. I don’t recall what meds you are on, but we all have to wait a few months for it to truly “sink in” to our system and make a lasting difference. I’m only 4 weeks in. I’ve been told it takes as much as 6 months on a maintenance dose of topamax for it to be its most effective!!! At 4 weeks I’ve noticed a huge difference, even though I’m not “cured.”

Let’s look to our future…how far into your “sort of working” meds at this point? What success have you seen so far? How many GOOD days have you had recently??? Tell me the good stuff that has happened lately!!

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Thank you! Its good to know that its not strange to have long vertigo. My last episode was when it first came and it lasted for 2 months. I got on nueronton and it helped a lot and now about 1.5 months later that humming and dizziness is back. They seem to correlated together. Once the humming starts i know in about a day or two the dizziness will start. Ok, so the good stuff is that I dont have that pressure in my head I use to and my brain is not as foggy. I am not as anxiety ridden as I use to be, but still there but not as bad. I did have a 1.5 months og good days, so that is a start. You are right, i know it will get better, bc all of you have gone through this. I really want to believe this is Labyerthis so that i can have that hope that it will go away some day. I know that i will not die of this so that is good. that was what gave me so much anxiety the last time. I need to except that this is my life now. This almost feels like Mieneres to me but my dizziness lasts for longer stretches than that. Thank you so much for replying to me, I needed to hear that it will get better and that you have gone through the same. :slight_smile:

Oh and my husband called and apologized! that was nice of him. he is stressed out by all of this too. its new to me so i am just trying to figure it all out and just deal with it all

Hi Notchoma,

I am sorry to hear you are feeling bad again. Did the dizziness start immediately after your massage or later that day? I think I remember you mentioning you trying to pop your ears and it made you dizzy- could it have been from that? I know it sucks to hear but even if you are on a successful preventative medication, you can still have some symptom flare-ups every now and again, and it doesn’t mean that your med stopped working. I think of it like fibromyalgia, asthma, etc.- you can be on a great preventative med, but you can get break-through pain, flareups, wheezing maybe when you are sick, etc.

Were you going to increase your med- did you do that yet?

— Begin quote from "sarahd"

Hi Notchoma,

I am sorry to hear you are feeling bad again. Did the dizziness start immediately after your massage or later that day? I think I remember you mentioning you trying to pop your ears and it made you dizzy- could it have been from that? I know it sucks to hear but even if you are on a successful preventative medication, you can still have some symptom flare-ups every now and again, and it doesn’t mean that your med stopped working. I think of it like fibromyalgia, asthma, etc.- you can be on a great preventative med, but you can get break-through pain, flareups, wheezing maybe when you are sick, etc.

Were you going to increase your med- did you do that yet?

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Yes i have increaded to 2700 . The dizzi.ess did happen right after massage. I really think it was that. She did a lot of work on my neck. It.was a two hour massage. I wonder how long i will be dizzy and i wonder why that triggered it

i did try and pop my ears about a week ago and it made me dizzy, but that lasted for about 2 days. it was not as strong as this. Another thing i did is i am taking antibiotics bc i have fluid in my right ear again. wants to try antibiotic just in case. i took one last night. i wonder if that has anything to do with it. rrrrr.

whoa 2700 mg- is that 900 mg 3 times a day? Does that make you sedated at all? The neck definitely can affect your balance- hopefully it will pass soon- no more neck massages and no more ear popping :frowning:

Do you actually have an ear infection or just fluid? It is possible the antibiotic could be making you dizzy too- I tried to take doxycycline and it made my balance even worse.

yes that dosage is high!!! and that is what she said to take. I take it for anxiety as well. my psychiatrist is helping me with the doage. bc my doctor ignores me. i need to see a neuroloigst who can help me.

i am taking antibiotics bc when i was taking them about 2 weeks ago it seemed to take away the humming in my ear, then 4 days later after taking it, the hum came back. we are trying to see if there is some sort of bacterial thing going on. it could totally be the antibiotics. i will give it another couple days and if i am still dizzy maybe i will stop them. he only saw fluid in ear but no infection.

I can totally sympathize about having a dr. who ignores you- my dr. says the best way to reach him is email- I email him, hear nothign for a week, and then have to email him again and wait a day or 2. My balance is so bad that I am almost housebound- I can’t sit here and be ignored yet again. He is really nice in person but he also prescribes me meds that no one else is taking from this board- it is frustrating- uggggggh. Psychiatrists are more responsive and sometimes know more about meds than the neuros do. We are truly suffering we can’t deal with being ignored on top of it. I hope things settle down again for you and that the new dosage works out.

— Begin quote from "sarahd"

I can totally sympathize about having a dr. who ignores you- my dr. says the best way to reach him is email- I email him, hear nothign for a week, and then have to email him again and wait a day or 2. My balance is so bad that I am almost housebound- I can’t sit here and be ignored yet again. He is really nice in person but he also prescribes me meds that no one else is taking from this board- it is frustrating- uggggggh. Psychiatrists are more responsive and sometimes know more about meds than the neuros do. We are truly suffering we can’t deal with being ignored on top of it. I hope things settle down again for you and that the new dosage works out.

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Yes I feel like my psychiatrist is the only 1 who gets back to me. She is the only one who cares. My neuro otogist just ignores me even an email. He hasnt even referred me to a neurologist. He wont make a.follow up appt w me.either.

The good news is that gabapentin did work for a while. Increase the dose a little, and make sure you stay away from ALL diet/lifestyle triggers. If that doesnt work, then try another med like topamax or nortriptyline.

So my dizziness.got better! It lasted for.half the day and now i just have medication dizziness due to the increase. Yay. That was so fast. Im so happy.

Glad to hear you’re feeling a bit better - stay away from those neck massages. Trigger point therapy could be a better option!
Barb

glad to hear it passed- it is always nice when people come back and say that they got better from their rough patch that they posted about- no more neck massages or ear popping :slight_smile:

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So my dizziness.got better! It lasted for.half the day and now i just have medication dizziness due to the increase. Yay. That was so fast. Im so happy

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See that!!!

Now, go cure the next migraine and make up with hubby :lol:

(note other thread)

Thank you so much everyone. You guys are great. Today has been fabulous. I almost feel totally normal if it were not for the humming in my ear but i get the feeling thats just gonna be with me forever. Ug. But it is what it is.

So glad to hear that- please keep posting good news- it is the only thing keeping me going these days- I am really struggling to keep going.

— Begin quote from "sarahd"

So glad to hear that- please keep posting good news- it is the only thing keeping me going these days- I am really struggling to keep going.

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I am so sorry. What is going on with you srahd? are you dizzy? It is so hard i totally understand. Everyday seems like its different for me. One day great the next day bad. I get nervous when i get dizzy that it will be that 2 month escape. i think thats why i get so nervous. to be honest this whole thing has made me a total hypochondriac. I notice every little thing. Tell me what is going on with you?

It’s a long story but basically have had this 2.5 years- had constant unsteadiness when walking the whole time, but for the first 2 yrs had about 75% of my balance where any med pretty much would make it worse. Since the summer for some reason my balance is now at about 10-20% of normal, I can barely walk with a cane, I am in constant agony from limping and lurching- if it gets any worse I will need a wheelchair. There is a question of whether I have lyme disease too so it is so complicated. You wouldn’t let a dog or cat suffer like this I don’t understand…been trying meds but nothing really helping balance. it just gets more complicated as time goes on gonig to see a regular neuro in may to see if i have something other than mav maybe? You are so lucky to find a med and get diagnosed so quickly- even if you have bad days the med can still be working- i know it is hard but try not to get too upset if you have a bad day or whatever- i know it is easy to get upset but hopefully it will pass. i wish i could take gabapentin bc it helped my pain but it screwed up my balance too much.