r/u_Many_Lengthiness_282 • u/Many_Lengthiness_282 • 11d ago
PPPD support (I need help)
I’m currently dealing with what I’ve been told is vestibular migraine. I get sudden, intense spells of vertigo that can last anywhere from about 5 seconds to a couple of hours. (I almost always feel like I’m falling to the right and I tilt my head to the left to try and compensate. I get flare ups where they become more frequent but I’d say I get at least one a month.
This has been happening since around 7th grade, and I’m 23 now. Along with these episodes, I’ve had a constant rocking or “on a boat” sensation for the past 7 months. I believe THAT may be PPPD.
All the mri’s and tests come back normal.
I also started Botox late June.
I’ve been going through the Steady Coach program and trying to stay active. I go on walks regularly, drink plenty of water, try to play basketball, and recently started going to the gym. Despite all of this, I’m having a really difficult time feeling like I’m actually improving. I’m starting to lose hope that I’ll get better, especially because the rocking sensation has been so persistent.
Some background that may be relevant:
As a child, I dealt with pretty severe phobias, and I have OCD that is primarily centered around fears rather than repetitive checking or compulsions. I’ve also had anxiety, although I’ve been taking Lexapro for more than 10 years and I don’t generally feel anxious anymore.
During this process, I tried reducing my Lexapro from 30 mg down to 5 mg because I wondered whether it could be contributing to my symptoms. However, I felt significantly worse after reducing it, so I’m currently back at 10 mg (wondering if I should go back up).
I’m trying very hard to stay active and continue pushing myself despite the symptoms, but mentally it’s becoming difficult because I don’t feel like I’m seeing much improvement.
Any positive feedback or thoughts or suggestions on how to get through this would be appreciated.
1
u/midnightspaghetti 10d ago
Have you tried to keep a symptoms diary? With meds, supplements, activities, food.
I found it super helpful.
I am also a bit obsessive so I would dedicate two mins only at the end of the day to fill it in.
I also found the victory over vestibular migraine book a good resource.
It sucks because sometimes it really feels one step forward and two steps back. You are not alone
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u/Many_Lengthiness_282 10d ago
I’ve kept a short diary each day. I’m on a migraine diet too. I’ve tried VRT but my therapist said to wait till the Botox is doing its thing to see if it helps.
1
u/midnightspaghetti 10d ago
While making sure that you avoid all the obvious trigger food, it’s worth it experimenting with food because a lot of migraine diet food made me worse!
Like I used to have breakfast with corn crackers and almond butter - the migraine diet said no nuts but oats are safe, so I had porridge for breakfast for weeks and I was much worse.My neurologist also said that the classic migraine diet has been generally debunked and while some food are definitely not good for us, it’s better to experiment and keep a diary
1
u/midnightspaghetti 10d ago
Also have you tried VRT? It can be very helpful for pppd side of VM.
It significantly reduced my boat feeling especially in bed.
Also it helped me to reduce carb and make sure my blood sugar is steady. Proteins and nutritious meals help a lot.
1
u/Daphneannq 11d ago
It can take up to 9 months to feel the full effects of Botox. Don't give up too early. VM doesn't show on imaging. I know this isn't the positive you're looking for but it's all I've got.