I’ve been constantly dizzy-ish for 4 years now, constantly swaying. Its horrible and the last 24 hours I’ve been crying non stop because of how shit it is and realising how much time I’ve lost. I’ve come to accept the dizziness and it annoys me more than scares me, but its horrible.
I haven’t tried an SSRI yet because I dont like the idea of them but maybe I should, and I was hoping someone could tell me how things change when taking an SSRI or if I’m screwed.
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Joe - There’s really only one way to find out if a drug is going to work well for you and that’s to try it. Unfortunately dealing with VM is pretty much a trial and error situation. I was resistant to taking drugs too but I eventually got over it – drugs allow me to live a mostly normal life. I’ve tried several drugs that worked well for some VM patients but either didn’t work at all for me, or had side effects I couldn’t tolerate. That seems to be the nature of the beast we’re dealing with.
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Like you and @sfnative , I also resisted the idea of meds. My prescription for duloxetine, an SNRI, sat for 6 weeks before I made the leap. Results were not instantaneous, but over the next several weeks, my symptoms decreased. At first, it felt like my emotional capacity alone was improved, then thinking, then most of the dizziness-related symptoms, and even after 18 months, I notice improvement as my brain continues to “heal” because it is properly supported.
I am lucky because the first med turned out to be effective for me. I wish I hadn’t waited so long. I feel like I lost out on 6 weeks of healing. VM is a type of sensory integration disorder, and sensory integration is managed through neurotransmitters. That is what SSRIs, SNRIs, and the tricyclics are supporting: neurotransmitters. I think of it like feeding my brain a special diet. I don’t know why I developed VM, but I am grateful that the answer for me has been as simple as a medication.
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@Mdizzy how long did you have dizziness before you took medication, and was it 24/7?
Joe - I struggled for many years without a diagnosis. My symptoms very gradually got worse until they suddenly got out of control with extreme vertigo that left me unable to stand or walk for hours at a time. This was happening several days a week. I became disabled until I finally found a physician to help diagnose and treat me.
I take topiramate, an anti-seizure medication, daily to control the vertigo. It doesn’t work well for everyone but it works for me, thankfully, although there are unpleasant side effects. I take a migraine drug (rizatriptan) as a rescue drug when I start to feel dizzy, and when that doesn’t get the job done I take clonazepam, which also has side effects. I’ve tried other drugs but these are the ones that seem to keep me stable, which is the best I can hope for, but my case tends towards the extreme. I wish I had received proper medical care much earlier than I did when my symptoms were milder – I suspect things might not have gotten so out of control and difficult to treat.
My advice is to give the drug a solid try. If that doesn’t work, insist on trying a different drug. Try vestibular therapy if you haven’t already – it helped me but doesn’t work for everyone. Have your eyes checked by a neuroptometrist - lenses with prisms help some of us. Everyone is different, Joe, you just have to find out what works for you. It stinks, I know, but that’s what we’re all dealing with. Hang in there, keep pushing and don’t give up. Come back here when you need a boost. We understand what you’re going through.
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@sfnative Thanks so much, your response gave me hope and motivation to keep going. The last paragraph meant a lot. I’ll update you if anything ends up working, or if I have any other questions.
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hi Joe, you really need to try some kind of medication, believe me it helps. I have had pppd since 2018 and it took a long time to get a diagnosis. Most doctors have no idea what it is, and trying to explain is a nightmare. I am taking Eleva, I have been taking it nearly a month so haven’t felt the full benefit yet, but already know it is helping to give me my life back. Hope this helps in some way
Betty
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Joe- I can promise you you’re not screwed. What you’re dealing with is something that no matter how many times you try to describe it to someone it always feels like they don’t understand; doctors, friends, partners, etc. I’m here to tell you I understand I know exactly what you’re feeling. The people here know what you’re feeling. I can guarantee you that most of us if not all of us have had a point where we broke down, some of us including myself may have second guessed why continue to deal with it all together.
I’ve had it where it was 24/7 from when I was teenager until I was 24, swaying like a Mortal Kombat character ready to fight. I was paddle balled back and forth from a neuro to ENT and back to a neuro again. I accepted it. Id fall down and pick myself back up again the next day. I did all of that without meds. When my issues changed and increased after a fall off a ladder,(Why would someone constantly dizzy be on a ladder you ask? I’m crazy, but more importantly I never let my disability tell me what I can’t do until I tried it myself to set that standard. Also I didn’t even fall from being dizzy on the ladder…it’s a whole thing, back to the main message🙃) I went to a new neuro-oto Dr. Hain in Chicago and started on medication. I went to neuro-optometrist as well like someone said earlier. It was crappy at first it took time. At first I thought I wasn’t getting better and eventually i realized I was slowly getting better bit by bit. I’m at the point where my issues with the swaying and 24/7 is completely gone. I have new issues with perception but that’s separate from you and I.
The point I’m trying to say is keep trying. It took me a while to find my answer. I got so adjusted to it I think I miss it sometimes because I accepted it too much. I’ve had a couple relapses here and there, but I learned that having a normal life is hard with or without our issues, there’s no reason to stop here. Try the meds give it time everyone is different with meds. What’s good for me may not be good for you but why suffer where you’re at when there’s more rocks to be turned over my friend. I feel good now but I still come on here from time to time because the days I felt the worst or crazy; reading other people’s post, not feeling alone is a big part that got me through those worst days. I think the word I meant to say is hope, it gave me hope. 4 years is a long time and I’m sorry you have had to deal with this. Trial and error may take another year or so I won’t lie, it’s a journey, but not one you have to go alone.
I will step off my soap box now.
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@Maclunkey Thank you so much, and as you may understand reading and writing and focusing on this stuff makes me extra dizzy but reading thru it regardless helps a lot. Getting a few people to tell me itll get better means a lot and gives me hope.
What medication did you take if I may ask, was it an SSRI or a dizzy specific medication. I was planning on starting an SSRI thats why. Also with SSRIs its often that people feel worse at first (nocebo effect maybe or side effects) and only realise later that they actually do feel better (in a very subtle way).
Edit: I see you took escitalopram and another medication, so was it the esciatolpram that worked or?
For about 9 months. VM symptoms were constant, though dizziness waxed and waned throughout the day. Also, my type of dizziness was more about wavy, marshmallow ground and some positional vertigo that was visually triggered, but not active spinning (except for a few seconds here and there). On bad days, I couldn’t walk a straight line b/c I couldn’t look around or the visual stimuli would send me twirling. On good days, I just felt nauseated and tired, like the day after a bad hangover.
@Mdizzy I have the same type of dizziness (only for 4 years…) but hopefully an SSRI like you will help!!!
Super I just read a study and it said the following:
"Studies of phobic postural vertigo and chronic subjective dizziness suggest that long-term benefit probably depends on starting treatment early. Years of chronification usually imply a higher degree of maladaptation, more severe disability and more engrained illness beliefs. Undiagnosed or untreated patients can suffer for many years on end, which is why neurologists need to be familiar with functional dizziness and PPPD, must not shy away from a firm diagnosis and be aware of the treatment options summarised above. The presence of long duration symptoms does not preclude a good outcome with treatment. "
But so having it for 4 years definitely makes treatment harder and I will likely not fully recover…
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Can you please link the study (also only fair to researchers)
the last paragraph (its more of a review than a study)
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Much appreciated Joe!
I had my symptoms for a shorter time than you when I began medication. I’ve been taking meds since June 2023 and I am still feeling progress toward whatever the new normal might be. I had a similar experience earlier in life with a gastric problems: a lot of meds at first, decreasing meds over time as body healed (or so I think) to no meds at all now. It was a good 5 years between lots of meds and no meds. So, I feel encouraged for you. First, you’ll feel some sort of symptomatic relief, then over time, as your brain-and-body get re-acquainted, you’ll adapt again, away from current “maladaptations” and implementing new adaptations. This will be a “new normal”, but I don’t look at it any differently than I do a sports injury or aging (another thing I can do nothing about and which requires constant behavioral adaptation!). I think I function a bit differently now, but I can function. Give yourself the time to go through the process.
Yea did you feel the fear of the dizziness go away first when you took medication, and then the dizziness lingering on for a while? I’m starting to feel like my fear of it may go away, but its almost like the relaxation/the lack of fear, makes the dizziness worse?
Decreased anxiety over the dizziness was the first improvement even while I was having other symptoms. I think it helped me distinguish the different sorts of impacts VM was causing? The dizzy parts became clearer because the emotional part had settled down. That was such a relief that I thought I’d deal with the dizziness in return for not feeling so miserable about it! Gradually, the dizziness cleared. For me, the brain fog and nausea are the worst symptoms. My current “adaptations” revolve around what triggers those symptoms with poor sleep, extended hours of computer use, and strong emotions (anger, especially) being the big ones. I spend a stupid amount of time regulating breathing and behavior 
. When I get true dizzy spells, they are brief, often unexpected. But I don’t fear them the way I do “bad brain days” when the normal stimuli and demands of life squash me flat.
Just looking at the pictures in the beginning of this article make me uncomfortable! Hotel carpeting is the worst😬