Still dizzy!

Hey all! I got dizzy around 4 months ago and posted on here shortly after. I’ve gotten a bit better since then but not enough to live comfortably. Since then I’ve seen an otolaryngologist twice who did a few tests and mentioned I might have Chronic Subjective Dizziness, since I passed all the tests fine. I tried a full dose of Effexor for 6 weeks and felt horrible on it, and then 10 days on a lower dose and felt horrible on that too. Returned to the oto a few weeks later and he suggested I try Citalopram and ordered further balance tests (VNG, Posturography, something else). It’s been about 4 weeks on Citalopram and no huge improvement in dizziness.

I have some good days with a lot of bad days in between. Sometimes the dizziness isn’t bad at all and I get excited that it’ll go away soon. No luck yet. I don’t know what to think. I have a hard time believing that this is CSD or MAV or any of the other balance disorders. I’ve had wobbly floors for a few weeks but that’s improved, and now I’m just lightheaded, weak/tired feeling, and my vision seems like its “swimming”. I was dizzy like this for ~5 months last year and that went away on its own without intervention, and I have no clue as to what made it better that time. MAV seems unlikely since I’ve never had any of the conventional migraine symptoms before.

I’m frustrated and exhausted. I took this school semester off in hopes that this would run its course, but I’m going back in January. I barely have any energy as it is, I sleep 10 hours at night and then sometimes a few hours in the afternoons. My neck hasn’t stopped being sore either since this began. No idea how I’m going to deal with school work on top of all this.

Anyway, sorry for the long rant :slight_smile:

Sounds hellish.

I don’t have an answer to spring on you, but I sure hope things get better.

There are a bunch of people on this board who are very savvy about meds, how long it makes sense to try a medication/dosage, when to talk with your doc about moving on to try another. . . .

Thanks for the reply David. Part of what makes this so bad is not really knowing what you have. It seems like most, if not all of the dizzy conditions include vertigo which I’ve never had. Chronic Subjective Dizziness makes sense in that regard, but I seem to have more of the MAV symptoms. Wobbly floors, feeling like I’m walking on a boat, and rocking sensations all seem to be more common in MAV. But then again, I’ve never had any migraines before and rarely get headaches.

I keep thinking that my dizziness might caused by something that isn’t brain or vestibular related. The feeling weak and tired could be anything, but these symptoms were very intense when I first got dizzy. Feeling malaise to the point where I got out of bed just to eat and that was it. Had a stuffy nose and a very heavy head along with feeling lightheaded. I would wake up all the time during the night to pee and with a gnawing stomach. Just odd symptoms that aren’t in line with dizzy conditions. Maybe I have some sort of disease, infection, or brain damage?

I just don’t know :frowning:

I don’t get “traditional” migraines, in that I very rarely get headaches. That’s why it took me so long to believe my diagnosis. But after being on this board and doing more reading, I realized that my symptoms are indeed because of MAV.

I’m not saying that you necessarily have MAV, just that 1) it doesn’t always present itself with a migraine headache, 2) it has a whole lot of possible, strange symptoms, and 3) it can come and go (for instance, I felt really well during pregnancy but now often feel bad again). Also, I’m definitely horribly fatigued when my MAV is bad, which I think is a combination of being depressed about feeling so badly, and using so much of my body’s energy just to stay balanced in the world.

Good luck to you; I definitely know what it’s like to feel so awful and to not know what is going on.

edited to add: my MAV started during my last semester of college, and I found that taking a very small dose of valium would help me get through my classes. I did miss two full weeks of class that semester, but managed to still do well with my grades.

Cassada,

You’re right, MAV could be a possibility and I’ve seen that many members of this forum don’t experience the traditional migraine symptoms either. One of the first questions my Oto asked me was whether I have a history of migraine in my family (my mom’s mom and sister gets them) and if I have a history of motion sickness (not really). I also passed all the walking tests and marching on the spot with eyes closed. MAV people tend to have problems with some of these tests I think? Also I’m a guy so my chances of having MAV are lower :stuck_out_tongue: My Oto also gave me a script for some Ativan. It only helps a little bit and makes me even more tired. He mentioned I should keep an eye out on how my dizziness reacts and changes while I’m on it. I was hoping it would give me a lot more relief; then again I don’t take the full dose. Maybe I just have sinus infection? If only it were that simple, I would laugh all day!

Do you have your symptoms under control? Which meds are you on?

Thanks!

When I first started having MAV symptoms, I was not having migraine headaches at all. Although I have a long history of headaches, the headache pain was not one of my symptoms. Wobbly floors, feeling like my head was in a vice, dizzy/lightheaded feeling all day, floaty vision, anxious, ear pain and pressure, etc. I had a hard time believing it was migraine causing all of these awful symptoms.

What dose of citalopram are you on now? You may have to give the med a few more weeks to kick in and do its job. I took that one first and it took me a good two weeks for the dizziness to go away completely once I got up to the 20 mg level and at that point I’d been on the med for 6-8 weeks total. I’m now doing great on a combo of 100 mg Topamax and 7-10 mg Lexapro daily. I’m feeling 95-100% most days.

Anne,

I’ve been on Citalopram approximately a 4 - 5 weeks now. The first 2 weeks I was on 10mg and now I’m at a steady 20mg. Should I maybe up the dose to 40mg or does that not matter? And it’s great to hear that you’re doing so well! This board could use more success stories like yours :slight_smile:

Hi DarkIce,

Sorry you are experiencing these horrible symptoms. You mention seeing an OTO but I didn’t read anything to suggest you’ve seen a neurologist or neurotologist - have you (sorry if I missed that in any of your posts)? That sort of specialist would be better placed to make a diagnosis of migraine, if that’s what you have. With your family history that’s a good indication that it may indeed be migraine.

I hope you find some relief soon. Dizziness sux.

Vic

I always pass walking tests or tracking objects.

Ativan makes me really tired too; not my first choice of drug unless I need help to sleep (I’ve taken it twice: once after a massive panic attack that I actually called an ambulance for, and the other time was right after my son’s birth).

As for my current symptoms, I had a baby 10 months ago and felt quite well during pregnancy, but crashed a few weeks after his birth. Not nearly as bad as pre-pregnancy when this whole thing started (and when I was on the pill), but definitely there. Most days I’m fully functional but I do have my bad days (today was quite a bad day for me, actually). Not on preventatives at the moment since I’m still nursing, but I will be looking into them more once he weans.

Vic - I haven’t seen a neuro yet, just the Oto. He seems very knowledgeable about the dizzy conditions and even recommended I read The Migraine Brain if I wanted to learn more about migraines. I’ll ask him about seeing a Neuro after I get my other balance tests finished. I just don’t know if migraine seems probable, even though it is a common cause of dizziness. I’d say the aching muscles and fatigue is almost worse than the dizziness. My neck hasn’t stopped hurting since I got dizzy 3ish months ago. If it was MAV would the dizziness have gotten a little better over time (which it has)?

Cas - Were you on any preventatives before you became pregnant? If so, did you get any relief that time?

Thanks!

— Begin quote from “darkice101”

My neck hasn’t stopped hurting since I got dizzy 3ish months ago.

— End quote

Hi - just thought I’d post my experiences re. the neck aching. I had so much trouble with my neck aches/pain. I tried everything I could think of to fix it - acupuncture, massage, physio, chiro. I found a great physio who specialised in necks and he did a great job in fixing my neck pain, and gave me some great stretches - my neck felt the loosest and best it had ever felt - all to no avail, as the neck ache and pain and stiffness would always return. I have MAV, and with the use of MAV meds, like Topamax, the neck ache/pain has pretty much completely disappeared - it was all being caused by migraine! (Unfortunately, the 24/7 dizziness/unsteadiness is still around, but that’s another story)…
Tony.

Tony makes a good point. As you got the neck pain** after** becoming dizzy that’s a good indication that it’s a symptom of migraine rather than the trigger. Still, it can’t hurt to get your neck checked out.

And that’s a switched on Oto to suggest reading The Migraine Brain. :slight_smile:

Vic

My neck hasn’t been checked by any doctor, although I’ve told most of them about it. I think dizziness in general causes stiff necks, but mine has never gone away once even with lots of stretching and Advil. I did do upper body workouts for a few months prior to getting dizzy and that made my shoulder blades and neck a little sore. I still have those sore spots in addition to that specific neck pain that started with dizziness. I haven’t done any hard exercising since then, and have gotten 2 massages plus a couple of Chiropractor adjustments done. It seems to help for a little bit but the soreness just comes back.

I do remember having a sore neck and trigger points along my back last time I got dizzy. That all went away along with the dizziness after a few months. I’ve always had bad posture from sitting on the computer for so long, and have been less active since getting dizzy so maybe that’s why? It doesn’t help that my body feels so weak, heavy…and just broken :stuck_out_tongue:

Thanks everyone!

edit: Also does anyone know if your wisdom teeth can cause any of this crap? When I got dizzy last time my upper right wisdom tooth started to erupt and came in quite a bit until the dizziness disappeared. Over the last 3 months my upper left tooth came out quite a bit. Might be just a coincidence though…

Hi. I was curious about your neck pain… I assume you’ve had everything checked out in your neck? I’ve had chronic neck problems since I was a kid and got hurt in gymnastics. I’ve personally found Chiropractic to be of help, for me… but, I know it does ‘nothing’ for others. I do know that if the nerves in your neck are irritated, and the muscles there are too tight it can cause all sorts of havoc with all sorts of varied symptoms. Anyway, that’s what stuck out to me when reading your posts. Do you remember if your neck hurt at all the last time you got dizzy like this?

I wish I could offer some other advice, but my symptoms aren’t a lot like yours (except neck pain). I hope you find an answer and something that works to keep the world from spinning really, really soon.

~ Shelly