I am new to the forum, and I am so grateful we have this support network. I must tell you that this year has been a journey of loss. My neurologist and my supervisor insisted I consider short term disability, and when I applied, they approved me for long-term disability. I am considered retired at the age of 43, which is very weird because I loved my job. I am (was) a family therapist, but I could not ensure I could provide the consistent support my clients deserved. So, I am coming to accept this new reality. I have lost some close friends along the way because I am not terribly reliable. I'm sure you all relate. Here is my question:
Chiari Drops - I just started experiencing these in April, and after this occurs, it seems like the earth is moving like the waves of the ocean. Are these fainting spells or seizures? Can you die from this?
* - That may seem dramatic, but that is my real question. They really scare me. I am on driving restrictions now so my husband is required to drive me everywhere.
Bri, you are not alone with what you are going through. We all experience symptoms a little differently but share many of the same life changes from chiari. I’ve never had the drop attacks you are talking about, but many people here have. Do you loose consciousness? Or does your body just give? I am sorry you had to stop working and driving. Either one of those on their own would be a big deal. How are you handling it? I want you to know that although mainstream medicine has a very limited knowledge base about our condition there are experts out there who do understand more then the average NS and actually help people. There is hope…don’t ever forget that. To answer your question about death…yes people do pass away from this condition- not the drop attacks specifically- but from central nervous system dysfunction. Apnea (waking or sleeping) and heart problems are a concern. From what I know death is not common but does happen. Please look into Dysautonomia and apnea. Since you are recently diagnosed I’m going to paste an earlier post here that I think my be helpful for you.
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency (high daily doses of D3 can help with symptoms)
Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.
Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required. Finding a surgeon who screens for CCI is tough- not all Chiari surgeons have started screening for and treating CCI.
Dysautonomia- Dinet.org (this is a big one for anyone with brainstem issues!)
Tethered cord syndrome
Sleep apnea- dangerous, especially if Cranio cervical instability is involved
Thanks a lot, Jenn. I have never heard of CCI, so I will check it out.
Going onto disability has been really challenging for me because my work fed me. It is so weird how friends sometimes judge us by telling me how nice it must be to not have to work any longer, which seems ridiculous. My work was so wonderful, and my boss was an amazing person. I miss my work family.
As a grief counselor, I understand the stages of loss, but this doesn't mean I get to skip any of it. However, I am grateful every day for my life. I have an amazing life and try to start my day with a gratitude list each day, because this journey is teaching me something.
Thanks Jenn! You have a very kind heart and lovely spirit. I hope to be able to support others and support you with holding up this site if you ever need it. I have a lot of time now and am happy to help in any way.
When I fall sometimes, I lose consciousness and those are the worst. This has only happened twice, but I also see spots a lot and when walking up stairs, feel as if the next step is much higher than it really is. It is weird. I feel as if I am going to fall into the next step.
Do you ever experience symptoms like that? I am seeking a regular doc and a pain doc now that we have moved to the Palm Springs area. I loved my doc in Denver but am seeking a new one. Any suggestions?