Not sure if you have read my profile but I have been diagnosed with a chiari malformation - cerebellum has herniated downwards. I mentioned a chiari years ago to my friend as i also have ehlers danlos and autonomic dysfunction but it was missed on 4 mris. Finally diagnosed this year.
I am trying to find answers to the episodes I have been getting where I lose co-ordination, feel very unsteady, cannot judge distances, peripheral vision goes askew etc.
However, just before I get the symptoms, I get warning signs such as a feeling of unwellness, tremors and head pressure (which is due to chiari and csf). I just do not feel right and a while later, I get the main symptoms.
My GP has been no help as they know nothing of chiari but I am due to see a neurosurgeon in August.
I am thankful these episodes are intermittent. They are usually short lived, up to a couple of hours but did once last most of the day.
I really do not know if it is ataxia (feel a fraud being on this site) but really need answer to what this is, and ataxia is the nearest description of what I get.
Does anyone else get a ‘prodrome’ to their main symptoms??
Sorry to hear about your problem getting answers. I do not know much about chiari, except what I heard from a very far away acquaintance who has it, but this is not enough to help you at all.
Have you tried www.chiari.co.uk ? They have a support group online. Usually, support groups arethis your best bet to find information: patients often have more answers than their doctors.Although each case is different, there could be someone out there with the same symptoms…
Your own explanation seems very logical though. Your cerebellum could be compressing your center of balance, triggering the symptoms . But doctors do not go by logic, they need proof . Hopefully your neurologist will have answers. If not, may be you could try a chiari specialist.
Good luck to you and best wishes.
I am not sure this link will work, but this might article might help you. Let me know if you have problems viewing this article. I will try to get it to you.
yes, but I will describe it as good day or a bad day because Im not really episodic but I have worse days. My leading indicater seems to be when rinsing shampoo from my hair when I must close my eyes while looking up. If I fall (bad day). Sounds odd, but anyone else?
Couldn't find your profile, but there are enough similarities in your symptoms and mine that my comments might be helpful. I have Vestibular Episodic Ataxia, triggered by visual scanning. Also compression of the neck or shoulders can trigger, such as putting my arms up or reaching out for extended periods. So reading, electronic device screen time, and bending/reaching to shampoo/dry my hair, do laundry or gardening can be triggers, even in my familiar environment. Being in public places, with people moving in my peripheral vision, adds other triggers. My episodes can also cause pain or muscle spasms in my extremities, mostly my feet. Sometimes I get shoulder and TMJ pain, to the extent that I've visited my dentist to check my teeth.
Are there warnings? Yes, and I have learned to pay attention, rather than think I can "get through this," without consequence. My prevention strategies are (1) limit reading and screen time, (2) focus on where I'm walking, not on the surroundings which require peripheral vision, (3) take a rest break when I get a warning and then do something completely different. For instance, writing this message has required three breaks so far. After I rest my eyes, I might do something physical like tidy up the room, go for a walk, or pet my dog. Later I return to the computer.
I've had symptoms for 15 years and was diagnosed 10 years ago. No drug therapy has been beneficial. The treatment which helps me is CranioSacral Therapy from a physical therapist. The technique is taught by Upledger Institute in Florida, USA.
Good luck on your search.