I have been thinking… I NEVER HAD A PAIN migraine just the tons of other weird symptoms and despite the diagnose done by Dr S could it be pppd? If yes how would I know
Forgive me for being cynical, but if you have two diagnoses, both with an identical set of symptoms, both can come on spontaneously, both have similar treatment … what does that tell you and what’s the benefit of having either specific diagnosis, does it change anything?
No, neither have I. ‘just’ true rotary vertigo, dizziness and all the other vestibular symptoms or nearly all of them. Cannot answer your query. Doubt there is a definite answer. For PPPD to develop I understand there has to have been a major vestibular event and the prolonged constant dizziness must be of at least 3 months’ duration. No such definition exists for VM as far as I’m aware. VM is an umbrella term for a collection of symptoms and PPPD is another one defined by symptoms. There’s tons of references to PPPD on here. A good typical case which appeared in the national press occurs in an article appended to an old thread of mine entitled ‘PPPD epidemic about to hit the UK? See if it relates to you.
Or perhaps, do you relate to this one? Helen
I had no headache pain for the first ~20 months of this becoming chronic, now I have daily ‘classic’ migraines along with the 24/7 dizziness. In a way, getting the pain in addition to the dizziness at least helped me accept (somewhat…) that this ‘all of this’ really could be migraine.
In any case, as Turnitaround says, it makes very little difference to the treatment options; indeed, i read a study recently that said that treating other balance towards (PPPD, MdDs, etc) as if it were chronic migraine (i.e. with preventative medications) actually leads to better outcomes for patients than the standard treatments for those disorders anyway. I believe such studies are leading many to begin seeing PPPD as an atypical migraine variant.
Best wishes, D
I suffer from “silent headaches” and migraine equivalents for the past 7 years. I have been to many neurologists at NYU hospital and also other very well know neurologist, much to my dismay they were very unfamiliar with “silent migraines” until I finally got a diagnosis by a Neuro at Columbia. I have suffered from migraines as a child and then they returned when I was around 35. I felt that the silent diagnosis is very generic so every time the symptoms began I would feel hopeless not knowing what the diagnosis really is. My symptoms are fatigue, tunnel vision , dizziness, Nausea and these last for approx 3 days before I get relief and it all subsides.
Do you have these symptoms with your migraine equivalent ?
Thanks for all the info you can provide.
Hi Anna and welcome back. You sound much like me. I went more than a decade misdiagnosed most probably because my attacks lacked the headache element. You can read my story to date under the Personal Diaries section. I’ve been taking Propranolol for three years now and to date (and fingers and toes crossed) so far I’ve only had one full on acute attack (my attacks last 8 days) since I swallowed the first pill. Helen
Before you started taking the propanolol how frequent were your attacks / episodes ?
About two a year of 72 hour duration for many years from memory. I’ve not written records. Then they became much longer in duration, in fact 8 days (no variation I could time them virtually, was same with 72 hr ones, never varied and stopped as abruptly as they started). Not sure how iften the eight day ones occurred, again no written record. All I remember is in 2015 between January and end of September I had nine or ten, each of 8 days duration, and about half of those occurred August into September virtually back-to-back, just a couple of ‘free’ days between. That was when I Went Find A Neuro-otologist PDQ - it was getting ridiculous. I needed to find out what This Beast I was dealing with really was. I had no diagnosis at that point and no idea migraine was a possibility - no headache, you see. Helen