Many of us, me included, are disorientated by dizziness after standing up. It’s not unusual to put this down to Cerebellar issues and leave it at that. But, if this sensation is severe and persists, it should be investigated.
Orthostatic hypotension (postural hypotension)
Orthostatic hypotension — also called postural hypotension — is a form of low blood pressure that happens when standing after sitting or lying down. Orthostatic hypotension can cause dizziness or lightheadedness and possibly fainting.
Orthostatic hypotension can be mild. Episodes might be brief. However, long-lasting orthostatic hypotension can signal more-serious problems. It’s important to see a health care provider if you frequently feel lightheaded when standing up.
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I also may have cerebellum ataxia (I say might because I’m not diagnosed yet but it’s likely I do being that’s what’s in my family and I’m experiencing all the symptoms but you never know) anyway I used to wake up with that bouts of low blood pressure nausea and couldn’t move until I started taking a probiotic with brain health now I don’t have it any more. Also I am interested to know is your cerebellum ataxia inherited?
At the moment…I’m diagnosed with Idiopathic Cerebellar Ataxia.
Symptoms have accumulated since the 1990s, and I have had genetic testing relating to specific symptoms but no link has yet been found. I was specifically tested for SCA6 - Episodic Ataxia - Gluten Ataxia - CANVAS ( Cerebellar Ataxia,Neuropathy and Vestibular Areflexia Syndrome).
I have no family history.
My symptoms started with unexplained poor balance. I had a Tilt Table Test, and couldn’t stand unsupported afterwards. Because of this I was sent for an MRI, which showed Mild Cerebellar Atrophy.
My main issues are…poor balance, eye problems, dizziness and increasing problems with stiffness and walking.
I live in the UK, and am currently waiting to have Whole Genome Sequencing.
That’s crazy my appointment is in June so I’m impatiently waiting. But I have grown up with this my grandmother had it then my mom I was raised up believing one child can get it when my sister was diagnosed I thought I was in the clear nope my other sister was diagnosed now I have issues great! My hope is we’re the last generation since we all got it I don’t want my kids or grandkids to get it.
I wish I lived in the UK I live in Florida it’s stupid here lol
I’m so sorry…it really is the luck of the draw. Generally speaking…if the ataxia type is genetic there’s usually a 50% chance of children inheriting…but it may depend on the specific type. Do you happen to know exactly what other members are diagnosed with
if you do…it should be straightforward when you have testing yourself. You mentioned Cerebellar Ataxia…is there a chance it could be Spinocerebellar ![:thinking: :thinking:](https://emoji.discourse-cdn.com/twitter/thinking.png?v=12)
![:thinking: :thinking:](https://emoji.discourse-cdn.com/twitter/thinking.png?v=12)
To be honest, if the ataxia type is genetic…the only way to definitely make sure it isn’t passed on, is to have Pre-implantation procedure…like IVF. Eggs are tested, and only the normal ones are used.
I don’t know if the care here is any better than the US…it can be just as difficult to get an accurate diagnosis, and the waiting lists on the NHS are very lengthy.
if it’s helpful, there are ataxia support groups on Facebook, most have several daily posts and recommendations and advice are passed on.
Cerebellum ataxia is what my sisters are both diagnosed with and I honestly don’t know what type my mom had she said a different kind but idk
I think if the genetic gene keeps going we needs to be a generation that adopts or have ivf.