I already had the TMJ. Intracranial hypertension was also floated.
Yeah, with PCOS I also have a ‘gland problem’!
It’s no wonder then we’re all dizzy. It’s because we keep going round and round.
What about ‘floating woman syndrome”. Let’s not miss that one out. Might be important.
If MAV didn’t make us all feel so very ill, the whole situation would be laughable. As it is really it’s pathetic in 2018 but there’s far more interest in putting men on Mars, or peering into Black Holes than in MAV research. More likely to grab headlines maybe.
omg, it’s worse than i thought!
Pugg, I get those exact symptoms and I’ve been diagnosed with MAV & Hydrops. I no longer get vertigo, but I go through phases of fluctuating disequilibrium.
I noticed on the run-up to me going fully chronic I would get dizzy for a few seconds when stressed. This to me was a sign of building Hydrops in my bad ear.
In my case I’m fairly certain my case is Hydrops as I injured my bad ear.
I agree with @Getbetter, you should focus on remedy.
I would strongly suggest you follow the MAV diet and exclude caffeine for a bit to see if it helps. Also consider dropping chocolate.
OMG what a great group of people you are! I especially appreciate the levity because we all know that dizzy is not a fun place to be. I’d respond to you each individually but spending too much time on the computer is probably the thing that most sets me a-tiltin’ so let me just thank you all for the responses and the humor and the good advice. I’ll be getting back the blood lab results in a couple of weeks so maybe I’ll discover allergies or hormone issues, etc. all of which might help me understand what’s going on, although it’s clear that for most of you who’ve been going through this a long time that I shouldn’t (and don’t) expect any definitive diagnosis and whatever diagnosis I get I should be prepared for it to change depending on what doctor I am talking to. And it’s true that I may try to avoid too many opinions and just find something that works, until it doesn’t, and then try something else. So far it seems I am able to control the dis-ease with vestibular suppressants like meclizine (“less drowsy” 24 hr. dramamine) and ginger (“all natural” dramamine) and the occasional micro-dose (less than .25 mg) of xanax (weird but x really seems to stop my tinnitus completely). The CBD oil helps me sleep and with my anxiety but I will say that, though supposedly not psycho-tropic, if I use too much (I prefer the fast results of vaping) it can make me a a bit wonky and causes major munchies. I’m gonna ask my new doctor if there is a better alternative to benzo’s 'cause I don’t want to get hooked on that heavy stuff.
Whatever we end up calling this I feel certain that you all will continue to help me know that I am not just some crazy ol’ codger looking for excuses to the realities of aging!
Your symptoms are exactly mine and was diagnosed with PPPD last November. I’ve been suffering from VM for two years now. Have done Vestibular Physical Therapy, Gabapentin, Amitriptyline, Effexor, Buspirone, and Valium. Seeing a psychologist currently and wasn’t surprised to find out many people who suffer from PPPD have had problems with anxiety/depression before coming down with symptoms.
Have you been working?
Going back to the title of this thread. Indeed what do we really have here?
What are we all suffering with? Obviously it varies. I wouldn’t say there are as many causes as there are cases on here but there must be quite a few different root causes. But eventually where does that bring us. Each individual that is. From the beginning I could see PPPD as being maybe Stage 4 of uncontrolled MAV.
I know for me my MAV journey started real slow n low, very gradually worsening over time, totally undiagnosed and with me in blissful and total ignorance of what might come. When I first went dizzy 24/7 in December 2014 - daft as it may now seem - I just waited for it to stop. After all people just aren’t permanently dizzy all the time without reason, are they. That’s nonsense and for over two months I just waited for it to stop, waking up every morning expectantly and subsequently disappointed. Because it had come on so slowly it wasn’t at all scary. I knew it wasn’t Anxiety when my GP gave me Citalopram which I refused to take. Once I eventually got a MAV Diagnosis in late 2015 it all made sense. It was MAV which I linked to hormone fluctuation. Now virtually four years on I’m wondering has it morphed into PPPD or now medicated am I most part-recovered and what’s left just resembles PPPD? I have been wondering on n off for a few weeks and then I read this. And I’m still wondering … Helen
What I find so interesting is the increasing number of posters on here obtaining successful control with Effexor, a SNRi which is suggested for PPPD. And then one reads that PPPD was previously referred to as both ‘Chronic Subjective Dizziness’ and ‘Visual Vertigo’ the latter of which Dr Hain specifically prescribes Effexor for so things seems to come full circle.
I was also diagnosed with vestibular migraine and PPPD after 3 years of anxiety. I tried several SSRI and had major side effects which forced me to stop it. I also tried lamotrigine but it did nothing. Now I’m taking Xanax 0,5 3/4 times a day, I know it’s a lot but my dizziness makes me so anxious and Xanax is the only thing helping me. Someone here in the same case ?
Please do a search here. You’ll find tons of references to PPPD and each of the meds.
try SNRI like effexor. VM can be chronic and hence often confused with PPPD. Once the migraine stops you will respond to VRT and compensate faster. SNRI works for VM better than SSRI.
Get off the Xanax and use it when things get really bad. You might be signing up for a world of hurt if you stay on daily benzo.
I also tried Effexor and had the same side effects. I had lots of big bruises which means a hemorrhagic risk. I know how addictive benzos are but I have no other choice, I have been doing VRT for months and tried a lot of medications but there isn’t anything else I can try
Thank you but I didn’t understand, where should I do the search ? I know everything the last publications say about PPPD but I’m thinking I might find someone who has the same problem and deals with it differently
Hi. It’s been a while since I was here… I am fortunate to have found some comfort with the disequilibrium and anxiety (although the anxiety has returned a bit with this awful virus situation). When I last posted, probably 2 years ago, I was pretty sure my problem was MAV or PPPD and was fortunate to find a doctor (DO not MD) who did not suggest pharmaceuticals… he gave me CBD oil and suggested benedryl… the CBD helped a bit (only) with the anxiety (why I considered PPPD) and the benedryl helped me understand that my sinus congestion was a factor. I had used xanax once or twice and knew it worked in the worse flare-ups but was nervous about benzos… I was also lucky to find that aspirin and/or ibuprofen helped too. However, the antihistamines (benedryl and loratadine) dried me out too much and I started looking for alternatives.
Around the same time I read of the FDA approving a capsaicin nasal spray for migraines. I went on-line and found a product called “Sinus Plumber” which is an all natural nasal spray made from horseradish and cayenne pepper.
I can only speak of my own experience but… it worked. Palpable relief the first time I used it and have been using it ever since. The theory is that it numbs the trigeminal nerve.
I think you might want to give it a try…
Good luck to you and hang in there.
(and apologies to all my friends here for such a long absence… i guess when my situation improved my energy became focused elsewhere. The support and empathy you all offered at the time was very important!!!)
this might actually give me a migraine judging by the spice level ! It is a homeopathic med.
yes. homeopathic and I too was nervous that it might make things worse. But it worked for me. The immediate response might feel like a worsening, because it is a powerful jolt… but within a minute I was experiencing relief. It did not provoke a migraine, quite the opposite. Real relief for me… but we all have different responses and triggers so I understand your caution
and, btw, I do not believe in homeopathy… the label says “homeopathic” but I do not know why… it’s not a 'like" microdose (sugar pill) of the problem used to treat the problem… it’s horseradish and cayenne pepper and you feel it immediately when you use it. Nothing like it to relieve nasal congestion and for me that seems to be the issue which provokes the MAV or PPPD or whatever it is…
Truth is, once I realized the doctors had no answers I stopped going back to them and started looking for my own… chasing a diagnosis was not productive for me
I also take daily supplements of magnesium (glycinate) with B2 and B12 (no B6) vitamins.