Constant Rocking/Imbalance - Thinking the Worst
Posted , 14 users are following.
Hi All,
This is kind of long, but it's becoming unbearable and I just need to know if anyone has any insight they can give me.
This all started early Feb. 2015, I had been feeling a little under the weather for a few days, but didn't think much of it. I went to bed one night and woke up around 4 am or so with my ear throbbing, feverish, and the room completely spinning. I didn't know really what was going on, but I'd later be able to identify it as true vertigo. I managed to get myself up after laying still in bed for a few hours and went to work. When it only kept getting worse throughout the day, I went to a walk in clinic and was diagnosed with an Upper Respiratory Infection, and given antibiotics, meclizine, and some allergy meds, basically just throwing the book at me. Dr. Told me I'd be better in a few weeks and it'd clear up with the infection.
Well, after about 3 weeks I would say the vertigo did go away, but I was left with a chronic sense of imbalance/dizziness. It took awhile for me to understand what it really was, but it was mostly a feeling of rocking/swaying, that also came with things appearing to be moving slightly. For instance when driving, if I stopped at a stop light, it would seem like the road was sometimes moving away from me. These were all super distressing, and I started having panick attacks, which I also didn't recognize for what they were at the time. I have always been a fairly anxious person, but never to the point where I needed to be medicated/couldn't tolerate my own anxiety.
It was after about 2.5 months of all of this that I went to see a GP, who put me on Zoloft to see if it would help. I was incredibly skeptical, as I don't believe anxiety alone would cause all of these residual symptoms. I had been googling everything, at one point I was convinced it was labyrinthitis, the next week Chronic Subjective Dizziness, and the week after Disembarkment. Basically anything that could cause the rocking sensation, I was convinced I had it all. Well after being on the Zoloft for a few weeks I actually did feel bettter, like I would say I was at 90% better. I was able to live again. I would say over the next 1.5 years I was at at least 90% most days, with some dizzy spells where I would feel like a pre falling sensation, that would quickly disappear and nothing other than more frequent headaches, and a constant fear of the dizziness returning as my symptoms. I had been on 50 mg daily, a fairly low dosage from what I understand.
Well, fast forward to November 2016. I went off the Zoloft in June of this year, as I had been doing better, but didn't think I needed the meds anymore. I had gained some weight from the meds, and wanted to try and work off of them. So officially in June I came off the Zoloft. I had been doing fine for the most part, with the occasional fear of the condition returning, and brief dizzy spells. Before starting Zoloft last year, a neurologist had recommended that I have an MRI to rule out anything sinister. Well after feeling better, I figured I didn't need to, but went ahead and had one done August 2016, as I was still having headaches regularly. The neuro said it looked clear, and he didnt' notice anything unusual.
Fast forward to November 4th this year. I had just returned from a week of Jury Duty, which had been fairly stressful, and I had two concerts planned for the 6th and 7th of November. They involved a lot of driving back and forth, as they were both out of town. On the 6th I hit the road for the 4.5 hour trip to the show, and made the 4.5 hr drive back that night, got home around 5 AM and slept for a few hours. Woke up and drove the 3.5 hours for the next one, and right back again that night. This is where it all went downhill. After the first night, I had noticed that I was feeling that brief rocking sensation again, but figured I was just tired from all the driving/lack of sleep and I could sleep it off. Well over the week it didn't seem to go away. On Novebmer 12th, I was taking my gf out for her birthday dinner, and noticed I was having really off feelings, felt like things weren't steady under me, things kind of seemed like they would fall briefly, and I was having anxiety attacks again. Ended up leaving dinner early and just going home to get in bed. Over the next week it only got worse, the weekend of the 19th I had a relaxing weekend planned with some friends out of town, so the gf and I made the trip up there, even though I was still feeling awful. I spent the whole weekend in bed, feeling fairly sick overall, burning a low grade fever most of the weekend, and the rocking was still there. It was at this point that I noticed something that has stuck with me the whole time. The rocking sensation is at it's absoulte worst when I have my eyes closed, sitting/laying down with eyes closed makes it feel like a full on rocking/swaying. I have been to see an ENT who said it didn't look like anything initially was wrong, he checked out my MRI from Augusta and said he didn't notice any buildup of fluid or anything. The audiologist in office put me through a series of hearing tests that all came out clear, I'm assuming to rule out Meniere's. I have to follow up with them in a week for an ENG test...which I am terrified of, they're going to make me dizzy again to test and that's what I'm most worried of.
List of symptoms I'm still dealing with as of today:
1. Feeling of disequilibrium/rocking/swaying sensation(made worse with eyes closed)
2. Trouble focusing, eyes feel like they take a second to catch up with where I move my head
3. Fairly frequent headaches, actually had a migraine headache for two days this weekend.
4. Anxiety/panic attacks returning, sporadic jump in heart rate, indigestion, same symptoms I had last time the anxiety was bad.
5. General fatigue/malaise, I sleep way more than normal and am still tired all of the time.
6. One small one my gf noticed, is that my pupils seem to be pulsing. They are constantly changing size, but only slightly
I haven't been able to do really anything I used to, I wasn't overly active, but I had been getting back into skateboarding/disc golf/hiking which I hadn't done for years. All of that came to a screeching halt with this second bout, I have been making myself go for at least 1 or 2 10-15 minute walks a day, as I spend most days at work sitting in front of a computer.
Can someone please let me know if you're going through similar things? The most terrifying part is that I can't find anyone who has this same issue, especially regarding the rocking being worse with eyes closed. I have convinced myself every other week that I have something new, Mdds, VN, PPPD/CSD, Anxiety. I just dont' know what to think anymore.
1 like, 36 replies
tina74654 colin47385
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melmelmel colin47385
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Hi Colin
I hope you still check this message.
I have the same exact thing you have, down to the t. I'm struggling as my quality of life is at an all time low. This happened to me about 9 months ago and the rocking and swaying never went away. I'm not sure what triggered it but it could possibly be due to a major stressful life event that occurred around that time?
I went to all kinds of doctors- ent, cardiologist, neurologist, general practitioner, psychologist, and acupuncturist, with no real diagnosis or cure. All I know is it doesn't seem life threatening from what I hear from them. I started to turn to google to research everything possible. I came up with mdms... mal de embarq.... ? Anxiety.. and bppv.
Did you go back on Zoloft? Is it really anxiety that caused all of this? I know for a fact this condition I have is causing me to have anxiety but I'm not sure if it's the other way around! Do these meds actually help? I may consider it.
Let me know how you're doing these days...and if you have heard anything else about this. I'm just so exhausted physicality mentally and emotionally from it.
colin47385 melmelmel
Posted
Hi Mel,
I do try to check responses on this post as much as possible.
I wish I could tell you I found a magic solution, but I haven't at this point. I was absolutely miserable for all of november/december last year. I had all of the same symptoms, and a new one that started this second time around. I started getting insane migraine headaches, something I'd never really experienced before. I was getting the full on head pounding, vision distorting, nausea inducing migraines people always talk about, and it was incredibly difficult to stay positive. I went back to my neurologist who said based on my MRI, and the fact that the ENT couldn't find any clinical reason for my balance issues, he was comfortable putting me back on zoloft since it did seem to help last time.
Now I started taking 50 mg of zoloft again just after christmas, and to some extent it did start to help a little bit, but not as drastically as it did before, and it wasn't helping much with the migraines. I started doing some VRT at this same time as well. After about a month on 50 mg, I was seeing pretty good results in terms of the rocking/swaying, and my dizziness was not nearly as severe as before. I hadn't noticed any change really while doing the VRT, and though I don't think it hurt anything, it was too expensive for me to keep up with. Some people have seen great results, but I don't think it was directly impacting my symptoms. I also at this time largely thought my issue was no longer Vestibular Neuritis, and more likely was related to Vestibular Migraines. I went up to 100 mg of the zoloft around mid February and have been on that ever since. I still get headaches daily, but only get true migraines maybe once or twice a week as of lately. And the rocking/swaying is all but gone, which is a lifesaver. I do still get dizzy more often than not, but the visual vertigo and rocking have mostly disappeared, which makes it a lot easier to tolerate.
My best guess is that those two symptoms were largely brought on by the anxiety of the vertigo/imbalance in my case, and that's why the zoloft seems to help.
Now here's my update on where I'm at. I recently went to my first visit with a TMJ specialist in the Atlanta area, to have some x-rays done to see if I have any TMJD(Disorder relating to the joint in your jaw), and if it could be causing my issues. My x-rays showed that basically my TMJ is entirely compressed in the socket of my jaw, where it should have plenty of space to move around in an otherwise healthy individual. The DDS that I saw was very candid with me initially, in that he said if I hadn't told him I had already seen an ENT, his first recommedation would have been to go through that route before considering TMJD, and that he wouldn't even say whether he could help me without my x-ray results. Once they came back in, he told me based on the severity of my TMJD, he was a lot more comfortable saying it could very likely be the cause of most of my symptoms, and he would be surprised if repositioning my jaw didn't solve most/all of my issues. The procedure can take usually 6-12 months depending on how much adjustment is needed, and in my case is going to be fairly expensive. Around $6000 USD. I'm trying to work with my insurance currrently to see if they will cover any of it, so I can begin treatment.
I strongly recommend going on an SSRI if you can tolerate it, espeically if you've had the rocking/swaying long term without any other medical reason. It has significantly helped me both times with that symptom in particular. I can't guarantee it will help you, but it certainly did for me. I'm hoping to not need it after I get finished with TMJD treatment, though I'm not sure when that will be.
I would recommend looking into TMJ issues as well. I mean as you know there can be any number of reasons we have these problems. The only reason I started looking into this is because I have a really loud/severe cracking/popping noise that my jaw makes whenever I open it, and if I move it side to side. A friend of mine told me about TMJ and that they had heard it can cause migraines, so it started me down this path. It's certainly worth looking into, especially if you're like me and have already been down the standard Neuro/ENT/GP path.
Best of luck with your recovery.
-Colin
connor25311 colin47385
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connor25311
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nikki1978 melmelmel
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I’ve been having issues for a while after having had a bad sinus infection. I was diagnosed with vestibular neuritis and then migraine and now pppd.
I am prescribed klonopin and Imipramine. I am hoping to change to a different medication that will hopefully help me. I get dizziness, disoriented and feel like I’m not really here, like I’m in a dream and it’s an extremely scary feeling. Cannot drive with this, stores and restaurants are difficult and even patterns on carpets are tricky for me. Do you get any of these? Especially the dreamy feeling, I think it’s called derealization.
Thank you.
colin47385 connor25311
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Hi Connor,
I have been back on Zoloft(At 100 mg now) for just about a year. I can say that I've been at about 90-95% improvement with the dizziness/vertigo since about a month after getting back on, and my daily life has basically returned.
In November of 2016 when all of my disequilibrium returned, I also started getting these really awful migraines, something I hadn't had quite this bad before. They were becoming constant and I would have a headache 24/7, that would progress into an actual migraine almost daily. I was at my lowest probably following christmas/new years 2016. I got back on the zoloft and it started to ease some of my dizziness, but didn't seem to do anything for my headaches/migraines.
It's at this point I had come across some information regarding TMJD(Temporal Mandibular Joint Disorder) and how it can be directly related to migraines/facial pain, and occasionally dizziness/vertigo. I went for a consultation with an expert in my area on this just to get a feel for what I could even expect. The guy I happened to get an appointment with was very open with me about cost and the fact that a lot of people have trouble getting insurance to help out since it is still such a new treatment. But that he would love to get initial jaw xrays and at least see what he could recommend for me, regardless of if I would end up staying with him. I took a chance and got the xrays done out of pocket(I think $400-500) and came back for a consult. We reviewed everything together and he walked me through how my TMJ was clearly under heavy impaction every time my jaw was closed, and he would be surprised if it wasn't at least exponentially increasing my head pain.
Now I'd like to just add in here that I've had issues with my jaw popping/cracking/grating since early in high school, and it's only progressively gotten worse as I got older. It's part of how I found out about TMJD in the first place.
The overall treatment plan involved using an orthotic to realign my jaw/bite and ease the tension on the joint. Of course the total cost was around 5.5k and I didn't have the money at the time to be able to start anything. I went back and forth with my insurance for a few months to no avail, and eventually after about 6 months I came back and just paid out of pocket(with some help from my parents up front for the money)
Here's what I can say so far. I have been on zoloft for a year and in my personal experience it has really done wonders for me in terms of my dizziness/disequilibrium. Most days I dont' even have to think about it anymore, and for that I am unbelievably happy. There were days barely over a year ago where I just thought I'd have to kill myself because I couldn't live every day like that. I don't want to be on medication forever, and I know SSRIs aren't for everyone, but from what I have personally experienced I think if you haven't found a solution yet, it's worth a shot at least.
I have been doing the TMJD treatment for my jaw/migraines for about 4 months now, and my headaches are about 85% better. I haven't had a full migraine in over a month, and my headaches though not totally gone yet, have decreased in severity significantly.
Though I don't have any real diagnosis on what caused everything. My neuro couldn't find anything definitive, the ENT I saw ran me through all of the standard tests and said there didn't appear to be any damage that would point towards VN. So I really didn't have a whole lot of options from the medical field. Thankfully my neurologist is a fairly down to earth guy, and said look, if the zoloft helped you, I think it's worth trying again. He said sometimes you won't get the answer you're looking for, but you might get a solution somewhere. And I do think it's improved my QoL insanely.
Sorry for the long post, but I want you to know I've seriously been through it all. I've done the MRI/VRT/ENT tests/Auditory tests you name it. No answers still, but I've found a few things that have worked for me, and as of right now I'm still doing them. I'm hoping to maybe try lowering my zoloft to see if I can try to taper off and maybe the TMJD treatment has helped my dizziness too and I just don't know yet. We'll see though.
Best of luck in your journey. My biggest advice with SSRI's is start low, and stay as low as you can handle. If 50 mg works for you and improves your QoL, stick with that. No reason to add more if you don't have to.
connor25311 colin47385
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colin47385 connor25311
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Hi Connor,
I'd like to just say for clarity I'm not a Doctor, nor do I have any actual medical training/experience. All of what I've said is just what I've tried/what I've been able to read about myself. But you sound like you are exactly where I was before going on the zoloft, and I think you should consider maybe trying a low dose SSRI for a bit.
Some people will tell you all of your symptoms are 100% CAUSED by anxiety, and I don't fully buy into that. It's actually how I ended up on the zoloft the first time, the GP I saw just assumed everything was an anxiety issue and wanted me out of her office. I think anxiety obviously plays a part in all of this, I mean how can you be dizzy all day and have the world spinning around you and not get anxious? But I don't believe you and I just suddenly developed all of these serious issues purely on anxiety alone.
Talk to a Dr. about starting a low dose, doesn't have to be zoloft, there are plenty of SSRIs to try, and not all of them will work for everyone. That's just the only one I've tried.
Good luck out there though, know it can get better.
-Colin
connor25311 colin47385
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connor25311 colin47385
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connor25311
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colin47385 connor25311
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Glad to hear it Connor. I dont' have any real diagnosis but that is my best guess for my condition as well. I started to develop actual migraine headaches as well which led to me even looking down that path. The overall dizziness/vertigo was helped a lot once I got on an SSRI, but the migraines were only getting worse. Someone on a facebook group I had joined had suggested I look into TMJD as a potential cause for my migraines, apparently they are very closely related. I've been seeing a TMJD specialist since last fall, and apparently my TMJ was actually fairly compacted and seems to have been causing a lot of my headaches. Been treating it for about 6 months now and I'm mostly migraine free.
Could be worth looking into as well if you think you may have migraine related issues.
connor25311 colin47385
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connor25311 colin47385
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