Support, tips for Recurrent Vestibulopathy
January 29, 2021 7:14 AM Subscribe
I seem to have developed Recurrent Vestibulopathy, and I'm miserable. I just had my second episode--2 and a half weeks after the first--which lasted over 24 hours, during which I had vertigo, general dizziness, shaking, weakness, and exhaustion. It seems to be over, but today I am still exhausted, weak, and not great mentally. I need help dealing with this.
All my ENT told me was to try to take a dose of meclizine as soon as I can when an episode hits. But I'm in need of other advice to help me get through the next 3 to 5 years--the time period this condition generally lasts.
If you suffer from this condition, or have in the past, do you have any words of wisdom for me? Tips on how to cope during the episode? Sleeping positions? What to avoid or what helps? It's extremely difficult for me to prepare any food at all, but I know I have to eat and drink to keep my strength up. I need to avoid very salty foods and too many carbs as well. Do you have any suggestions of food or drink that are super easy to have on hand and available to eat when I'm having an episode? Also, any thoughts on how to keep from feeling despair, terror, and panic when I'm going through this?
All my ENT told me was to try to take a dose of meclizine as soon as I can when an episode hits. But I'm in need of other advice to help me get through the next 3 to 5 years--the time period this condition generally lasts.
If you suffer from this condition, or have in the past, do you have any words of wisdom for me? Tips on how to cope during the episode? Sleeping positions? What to avoid or what helps? It's extremely difficult for me to prepare any food at all, but I know I have to eat and drink to keep my strength up. I need to avoid very salty foods and too many carbs as well. Do you have any suggestions of food or drink that are super easy to have on hand and available to eat when I'm having an episode? Also, any thoughts on how to keep from feeling despair, terror, and panic when I'm going through this?
Response by poster: Oh, and nausea. My first episode I vomited many times over a 12 hours period. This time I didn't throw up but I had constant low-level nausea.
posted by primate moon at 7:29 AM on January 29, 2021
posted by primate moon at 7:29 AM on January 29, 2021
I had something like this decades ago and in hindsight it may have been atypical migraines.
There are migraines where the only symptom is vestibular stuff. It is worth investigating this as a cause, especially if you’ve had migraines in the past, and then trying to use migraine meds to treat it.
Otherwise, it is hard to adjust to. Meclizine knocked me the heck out. My housemate at the time was a neurologist and tried the Epply maneuver on me with no good effects.
Sending you hugs because this sucks.
posted by sciencegeek at 8:34 AM on January 29, 2021 [1 favorite]
There are migraines where the only symptom is vestibular stuff. It is worth investigating this as a cause, especially if you’ve had migraines in the past, and then trying to use migraine meds to treat it.
Otherwise, it is hard to adjust to. Meclizine knocked me the heck out. My housemate at the time was a neurologist and tried the Epply maneuver on me with no good effects.
Sending you hugs because this sucks.
posted by sciencegeek at 8:34 AM on January 29, 2021 [1 favorite]
I do not have this condition, but do have dizziness, weakness, fatigue, and nausea as symptoms of chronic migraine. A few tips based on our similarities:
-Have meclizine everywhere you go so that it’s at hand when you need it.
-Stock some microwave meals and hearty snacks so on days when you’re having symptoms, food prep is minimal.
-Ask your doctor about a prescription antinauseant. Most will make you drowsy, which may be a good thing if it helps you sleep through the worst of the attack.
posted by epj at 3:09 PM on January 29, 2021
-Have meclizine everywhere you go so that it’s at hand when you need it.
-Stock some microwave meals and hearty snacks so on days when you’re having symptoms, food prep is minimal.
-Ask your doctor about a prescription antinauseant. Most will make you drowsy, which may be a good thing if it helps you sleep through the worst of the attack.
posted by epj at 3:09 PM on January 29, 2021
« Older Help me bust out of a recursive thought / reaction... | Talk to me about forgiveness. Newer »
This thread is closed to new comments.
Ziplocked baggies with nuts and bars as well as juice boxes or bottled water in every room will keep you hydrated and alive. Are you vomiting? You can ask your ENT for Valoid or another anti-emetic.
posted by DarlingBri at 7:28 AM on January 29, 2021 [1 favorite]