I’ve been suffering for nearly 3 years with vestibular symptoms. All of my vestibular testing and brain imaging was normal. I remain undiagnosed after nearly 3 years of daily and constant suffering. I had one neuro-otologist (very reputable doctor) tell me that it could be chronic subjective dizziness. The VRT has done virtually nothing to improve my condition. I’ve improved since symptoms began, I’ve gone from about 35% functional to 60% functional. I was told it’s probably not migraine because I have absolutely no personal history of migraine. I was told that one has to have a personal history of migraine to be diagnosed with vestibular migraine. I’ve never had a headache in my life prior to my symptoms beginning in 2011. I now have frequent head fullness/pressure, especially in visually active environments. Here’s the problem, CSD has almost the exact same symptoms as MAV. How is one able to decipher between CSD and MAV?? I understand there are some MAV cases that are easily diagnosable based on symptoms, but many are not. I’m actually beginning to think CSD is a bogus diagnosis created by the psychiatric community.
Has anyone else been diagnosed or loosely diagnosed with CSD?
Do you have a family history of migraine? I was diagnosed on the basis that although I have never had classic migraine (and still don’t get headaches), my parents do and my daughter does so I must have the potential in me.
Do you have a family history of migraine? I was diagnosed on the basis that although I have never had classic migraine (and still don’t get headaches), my parents do and my daughter does so I must have the potential in me.
You’re right, it’s very difficult to distinguish between the two and even further complicated if you have actual structural damage to the ear in the mix as well (as I do) and it has now been found that the migraine mechanism can actually cause physical damage too. I think a doc would say that it’s migraine if you find relief from migraine meds, but of course many of us are still trialling and not had success yet. For CSD they would also be looking for anxiety or depression but then these are more common in those with migraine and it is virtually impossible not to suffer from anxiety when your world won’t stop moving. I think there are people on here who have at least some degree of CSD and have CBT or psychiatric counselling but probably have VM as well. Do you have a lot of visual symptoms? Do you get more dizzy with screens/ computers? If so that’s unlikely to be CSD.
You’re right, it’s very difficult to distinguish between the two and even further complicated if you have actual structural damage to the ear in the mix as well (as I do) and it has now been found that the migraine mechanism can actually cause physical damage too. I think a doc would say that it’s migraine if you find relief from migraine meds, but of course many of us are still trialling and not had success yet. For CSD they would also be looking for anxiety or depression but then these are more common in those with migraine and it is virtually impossible not to suffer from anxiety when your world won’t stop moving. I think there are people on here who have at least some degree of CSD and have CBT or psychiatric counselling but probably have VM as well. Do you have a lot of visual symptoms? Do you get more dizzy with screens/ computers? If so that’s unlikely to be CSD.
— End quote
Yes, I do get significantly more dizzy in front of a computer screen. I have visual vertigo, but I don’t have any visual snow, aura or anything like that. Dizziness from computer use is a also a common symptom of CSD.
CSD is becoming a more popular diagnosis. Certainly one can have both CSD and MAV. I guess the only way to really know if it’s MAV or CSD is to take the migraine meds and see if they help.
some of the meds are the same i think to treat them like antidepressants- you could request to try nortriptyline and see if it does anything, it can treat both mood and migraine. i saw someone on dizzytimes recently who is in a similar situation and he takes st. johns wort and has found relief from his symptoms- its impossible to say if he has mav or csd, as that could be treating both.
I’ve been diagnosed with both conditions. They way it was explained to me was that I had migraine activity (vestibular migraine, mostly) so frequently and for so long that my brain rewired itself to automatically respond to motion, computers, stripes, etc. with dizziness and motion sickness (chronic subjective dizziness). Even if whatever was triggering the migraines was removed, I’d still react the same because my brain had been trained to do that. My neurologist just explained it using the language above and then a psychiatrist used the label CSD.
They worked together to find a drug that was recommended for both conditions. In my case, it’s Effexor. The psychiatrist also added behavioral treatment - 10 minutes a day on the computer until I could handle that without symptoms for 3 weeks straight, then add another 10 minutes and keep increasing following the same pattern.
I’ve been diagnosed with both conditions. They way it was explained to me was that I had migraine activity (vestibular migraine, mostly) so frequently and for so long that my brain rewired itself to automatically respond to motion, computers, stripes, etc. with dizziness and motion sickness (chronic subjective dizziness). Even if whatever was triggering the migraines was removed, I’d still react the same because my brain had been trained to do that. My neurologist just explained it using the language above and then a psychiatrist used the label CSD.
They worked together to find a drug that was recommended for both conditions. In my case, it’s Effexor. The psychiatrist also added behavioral treatment - 10 minutes a day on the computer until I could handle that without symptoms for 3 weeks straight, then add another 10 minutes and keep increasing following the same pattern.
— End quote
Interesting. I think I read that 20% of people with CSD also have comorbid vestibular migraine. Did you have a long personal history of migraines before you started having the vestibular migraines? Do you experience pain with your migraines? Is it possible to retrain your brain to be normal if you eliminate or limit the migraine activity?
I had migraines in my teens and early 20’s and then they stopped. I thought I’d outgrown them until they returned in my late 30’s. They were infrequent earlier and when they came back they were chronic. I do get the headache type migraines in addition to the vestibular symptoms. I’m the only one in my extended family that gets them.
My doctors said I’ll always have the underlying disorder, i.e., my brain will never be “normal.” But, if I can find a combination of medication, diet and lifestyle changes to reduce the migraine activity I could retrain the brain to stop responding to everything like it does now.