So I went back to my VR therapist yesterday (made it through the wait without chickening out and taking xanax this time, yay! lol). Things are on and off still, some days better, some days worse. She thinks she's basically taught me all she can but wanted to keep me on in case things take a turn for the worse. She said she wanted me to go back to my ENT and get a referral to the neurologist and get checked out anyway.

Called the ENT who said they needed her to send over her recommendation that I go to a neurologist. Leave her a message to let her know. She calls me back and says she talked to her mentor, and since it seems like I've been getting better, they want to keep seeing me every other week and hold off on sending me to a neurologist.

:confused: I told her, over and over!, that it always gets better, and then it comes back. That's the way it's been since last December. All she said was, "yes, I know, but you've been getting better, responding to the treatment." Ugh.... She seems to have totally forgotten that the first few times I saw her I was perfectly fine and then had another vertigo attack along with all the other symptoms despite all her treatments.

Why are they SO reluctant to have me checked out? This has been going on for over 9 months now, the recurring vertigo, that is. Everyone (friends/family) is asking me if I haven't had a MRI/scan yet? And why not? Hell, even my VR therapist asked me when I first came to see her, "And I'm sure you had all your MRIs/scans already?"

What the heck. :mad: What do I do?

Hi there. What is your diagnosis? If it keeps coming back there is limited things rehab can do and the docs need to investigate more. when it comes back is it as bad as the initial vertigo or more of a decompensation?
Hope you're having a good day :)
Joni

Thanks for replying, Joni.

I've had BPPV-like vertigo attacks coming back about once a month since December. I felt pretty horrible Jan-Mar with nausea, anxiety etc. That went away but the spinning attacks kept coming back (and going away within anywhere between a few days and a couple weeks.) I've started feeling crappy again in July/Aug. It's been on and off since then. Some days are good, some days are not so good.

My therapist knows all this. When I first went to see her, she couldn't elicit any symptoms. A couple weeks ago I had another spinning attack (one day after I saw her), and the following visit she finally saw my eyes jumping around and decided it was BPPV. I've been getting better since then again, but the problem I see with her is that she attributes my getting better to the therapy even though I keep telling that I always get better, therapy or no - until it comes back.

I'm not really sure how to approach this. Very frustrating. :(

The only thing I can think of Sipa, is that they/she don't feel it is necessary to get any more tests (MRI) because 99% (probably lower, I know I'm exaggerating) of the time the tests come out fine. This inner ear stuff is SUCH the pits because in my experience, you can get tested, and tested and retested and most of the time the test come out normal. The majority of us in here have had tests up the wazooo done, and they hardly EVER show anything out of the norm.

Now, I'm not saying at all that you don't need an MRI. I am assuming that you have already had the vast majority of tests done that we all get around here (ENG, blood work, CT Scan, etc.). If not, well then you DEFINITELY need to get that done. But if you have already had these tests done, my neurologist told me, "NO MORE TESTS!" when I mentioned to him something about an MRI. If the rest of the tests showed inconclusive, the MRI is probably going to do the same. However, if you really, really want to make sure, just push them further and tell them you insist on getting an MRI. But do not be surprised if the tests shows completely normal. I mean, that's good news and all because it will ease your mind about having a brain tumor, but it will put you back to square one and continue to wonder, what in the heck is wrong with me??!!!

I'm sorry, I know it is SOOOO frustrating!! :(

Thanks, Missy.

I think you're right that she doesn't feel like it's anything more serious (central). But... the thing is I haven't had ANY tests done other than people looking at my eyes. No blood work, CT scan... nada. She did do the Hallpike test with the infrared goggles. First time nothing. 2 days later (after I had had the vertigo attack), my eyes were all over. And that worries me too. From what I understand, I shouldn't have had any nystagmus when laid on the unaffected side. I did - steadily downward beating that wasn't subsiding. The affected side was nice and spinny, like they expected, and subsided.

I won't see her again for another 2 weeks. I guess then I'll just have to really push her although every time I've tried so far, she seems to stop listening. sigh :(

Hi again Sipa,
Forgive me, but I gotta say WOW!!!! You are one XXXX of a strong entity, in light of words. I now think I'm pretty lucky to have my doctor. I don't have any therapists,yet,and don't want any now ! Gee, I don't know what type of insurance you have, and I understand, that's non of my business. But I'm feeling like a big cry-baby right now! Here you been trying to fight this thing for over what 8 months, maybe more,, here I'am whining about a lousy 4 weeks. Again, I don't know your situation, or your resources,,, but it sounds to me like maybe it's time for you to start seeking a second opinion,, maybe even a new PHCP. I may be wrong cause I'm still new at this and all,, but I know Doctors and other specialists have very expecisive lifestyles,and since knowledge (or even the preception of such ) is power,, they (the doctors and such) they have it all,, we have little to none,, unless they share and educate us as best they can. To me, having you come back every couple of weeks or days for the same " See,, your getting better today" is crap!!!! I fear I'd be in a loony house by now if that was happening to me. You are very very strong!!! No body can ever take that from you! May God bless you everyday Sipa! And please believe that he already has been just by contiuing to give you the strength to fight back and live your life to your fullest and to reach out to help even others like me. God bless you,and keep fighting !

Well, lol, thanks for the kind words but I think you will find that there are many people here who have been dealing with this for much longer than I have.

I agree that if you have a good doctor who's willing to listen and actually find out what's wrong, you're very lucky. My GP is pretty worthless and I really need to change to another one. My ENT is pretty good, I think, but dizziness isn't his specialty. And my therapist...she's nice but man... :rolleyes:

Don't let this stop you from going to vestibular rehab. Chances are if you've had dizziness/vertigo for a while, you'll need to do some exercises to help you get back to normal. And even though I think my therapist isn't the best when it comes to evaluation, she does help me find exercises that work for me and how to do them properly.

Regarding my insurance: I'm not really sure what my options are from here. The ENT told me my therapist had to send over a recommendation to see the neurologist before they could refer me. Maybe I should just call them back and ask what to do since she's wants to hold off on further testing.

I do have a high deductible which discourages me from going to different doctors until I find one who's right for me. I do go to get checked out obviously but not as much as I should be. There are a few things I have on my to-do list but that'll have to wait a little.

Isn't it wonderful..

Well sipa - I would definitely want to have at least the blood work done just in case you are anemic or your hormones are out of whack (which can cause dizziness and all sorts of crap). I found that my RBC was kind of low so I have started taking an iron supplement daily and it seems to have helped.

Anyway, you should at least get the bloodwork done to put your mind at ease there. The CT Scan is questionable. It too usually shows nothing conclusive.

You're in So Cal - me too. We have lots of options of healthcare around here so I think if your PT isn't listening, move on. But another caution which I don't have to tell you I'm sure because you seem very knowledgeable on this stuff - most doctors will not be able to give you one magic antidote or be able to satisfy you completely because this inner ear garbage is mysterious. And like ONE of my neurologists told me that has stuck in my mind, "Dizziness is extremely difficult to diagnose and treat." But at least someone should be able to help you more than what you are getting now.

Thanks, Missy.

I realize dizziness is very hard to diagnose and treat, and it probably (*knocks on wood*) isn't anything horribly serious. It concerns me a little, and when I'm fighting anxiety not so little, that no other tests have been done at all. I asked around a little and one of my friends is extremely happy with his doctor so I will try to get in there and see if I can make her my PCP.

I'm ok with the fact that there is no pill that'll make this all go away, and that it'll take a while to get over this completely. I guess all I really want is to make sure it isn't anything serious. When I'm in a middle of a bad day, the uncertainty makes my anxiety skyrocket and really difficult to control.

That said, what kind of blood tests should be done? Hormones, RBC, anything else? I like to go prepared. :D

I totally know what you mean. My anxiety is so crazy when I don't know what is going on. Or even today, for example - I was feeling a little crappy because it's that "time" of the month, and I had to get my allergy shot and I just felt uppety for no reason. I know it's that my estrogen is low right now, and that always makes me feel horrid. But still, the anxiety is there just nagging the heck out of me. Those doctors offices are just the worst. And just think, I have to do this twice a week for years! ;) I'll get used to it I'm sure.

Ohhh, the blood tests. I've had my share. I don't have them in front of me right now - only the hormone one:

Endocrine/hormone tests
Estradiol
Luteining Horm
Prolactin, S

And wouldn't you know - the results came back normal on the hormone tests. Arggggg - I know they are NOT normal. Or maybe it is normal to feel like you are dying during your cycle and ovulation. :mad:

The other blood tests are just the typical RBC panel I guess, that checks to see what your white and red counts are to make sure you don't have an infection and how your organs are functioning. But your new PCP should know. That is the one that showed my iron being low. Since I started taking the iron I have less headaches around that time and just feel better overall. If you are still having your periods, taking an iron supplement is proably a good idea but check with doc of course.

Things always get worse for me pre-menstruation too. If I'm going to have a vertigo attack, that's when it happens. Maybe I should make sure to schedule the appointment with the new doctor during that time and have her do the blood tests then! :D

Thanks for the info. I'll try to look into it too, maybe I can find out which ones should be done or might be a good idea to do. I'm pretty convinced by this point that unless you're dealing with a specialist who doesn't do anything but deal with vertigo/dizziness, the doctors don't know more than we do, and probably less. Can't really expect general practitioners to know about everything, to be honest.

Hi Sipa! When you get a vertigo attack, is it from having your head into a certain position, or does it happen just from sitting there?

Cathy

Hey Cathy!

It's like a classical BPPV attack. Always happens at night/morning. I turn over to my right and things start spinning out of control. The spinning disappears as soon as I turn my head away from the right.

I guess that's why everyone's so sure it's BPPV.. and I would be too cept for a few other things, like it recurring pretty much monthly, the nystagmus when I laid on my left during the last Hallpike, and the continuing unwell/off feeling.

[QUOTE=missy7777;3229698]Well sipa - I would definitely want to have at least the blood work done just in case you are anemic or your hormones are out of whack (which can cause dizziness and all sorts of crap). I found that my RBC was kind of low so I have started taking an iron supplement daily and it seems to have helped.
Anyway, you should at least get the bloodwork done to put your mind at ease there.

I'm sure glad to see that there atleast may be other options there for you to explore. Also I totally agree with Missy about the blood work!! My Dr. also started out telling me about all kinds of conditions that can cause these symptoms,and that many of them may be tracable through routine blood tests. But then they (doctors) seem to get lost when these tests come back normal,, that's where I'am now. In my imediate blood line, on my dads side, they are peppered with diabetes (not him,nor my brothers,and luckily not me iether). But he does have Hypothyroid and glocoma and something else that I can't pronounce or spell. Course my spelling is way off these days now too lol. My mothers side had more heart and muscular problems, and other problems that involved obesity. Her youngest brother had MS, which they havn't tested me for that yet,and her father developed Alzheimers about 7 years before he passed away. Also my husband heard something about B Complex, I asked my Dr. and he said it wouldn't have any adverse effects with my current meds and that I could try it if I want. Mine is, Advanced B- Complex with Vit C, and Iron. I've been taking 1 everyday since last Friday.

Hey Sipa, I think you need a few more epleys, couple in a row for a few weeks. My crystals have always been stubborn and that what worked for me. I used to live in socal, and the funny thing is that i am moving back there by the end of oct. There are some great chiropractors that do epleys. Thats who I went to, and had great success! Try a chiropractor if the PT isnt helping. But make sure they do the epley.

Cathy

Pumama: Yea, I'll try to get in with that new doctor and pressure her to get a full checkup done on everything. I have hypothyroidism, they figured that out when I was about 13, and it's an autoimmune disorder. Been on medication for that ever since and doing ok with it. I should probably get that checked by someone who knows what they're doing anyway. My current GP tried to adjust it several times over the past 6 months and I KNOW he is clueless.

I told my therapist about it because I thought the fact that it's an autoimmune disorder might be important but she more or less just shrugged it off. Bleh. >.<

Cathy: She's done several Epleys and had me do them at home on my own as well. I do think they helped when I had the acute vertigo. But I also know they do nothing to prevent it from coming back. The last attack I had, I went to her on a Tuesday, she did the Epley, on Wednesday morning woke up with vertigo. She had no explanation for it.


Had a really crappy night last night, couldn't sleep, anxiety coming back... ugh. I'm not even feeling nauseous today but just kind of foggy and just not well. *sigh*

I'm with ya Sipa - I just posted about my crummy night last night. Sheesh! I am really starting to wonder if this is mostly hormone related. I mean I have read that hormones can cause dizzy/vertigo and all of the other stuff we are experiencing. I think its perimenopausal - and our bodies need time to adjust to the fluctuating hormones. Ick - I sure feel lousy right now - totally seasick and nauseaus. :(

Yea, just read your thread. Man...

You know, I thought about it being pre-menopausal too but I think I might be a little young for that. 34. But hey, who knows, right? I'm coming up on that time of the month too pretty quickly (don't even remember for sure... might be next week... or the week after.. haha, I should really keep track of that better!)

I'm not feeling nauseous quite yet and I'm really, really sorry you are. That's the most horrible feeling. I wish I could say or do something to make you feel better. :(

Thanks sipa! Yah, 34 might be a bit young for peri-meno but who knows - the books all same something different. I am only 40 and this stuff started when I was 39. I know my grandmother reached menopause when she turned 46 so maybe we start young. Or maybe, it's not perimenopause but rather just hormone fluctuations. Who knows! I tell you though, after all of the research we do, we may as well become M.D.'s!! ;)

Hey ladies - It's AMAZING how many women are suffering from the same vertigo and dizzy symptoms as we are. Some of them starting taking HRT and the dizziness went completely away. Of course, HRT has it's own problems and I'm not willing to go there, but it is just interesting to know that our dizzy problems could be related to hormones. The doctors won't mention that. And the hormone blood tests won't show it as well. Sometimes it can be an estrogen withdrawal or low estrogen. Like for me, the worst is around my cycle and also mid-cycle around ovulation. My dizziness seems worse around these times.

Anyway, just something else to consider in our road to recovery and healing!

Yea, it's definitely something to look into. I wonder why it isn't detected by blood tests? That should be easy to do. :confused:

If I can get in with that new doctor, I'm definitely going to bring it up. It's just too much of a coincidence to have increased symptoms the same time of month every time.

If your symptoms don't increase pre-menstruation, your hormones are probably not a contributing factor so I wouldn't worry about it. In my case, symptoms have been extremely pronounced during that time, that's why I thought there might be an issue there.

I have been doing quite a bit of looking around for the topic online but it seems that I'm not very good at searching the tubes. I can't seem to find much info beyond general PMS symptoms and a bunch of we-want-to-sell-you-herbal-supplements websites.