Severe Symptoms but Little/No Pain

[Sallaranda]

I have been dealing with these issues for about 16 months now and they are getting worse. I am completely bed ridden and lying flat in bed does NOT help. I keep having these ‘episodes’ where I start feeling out of breath and lightheaded, and then it feels like my neck is getting squeezed or cut off. I feel like I’m suddenly falling. My neck feels like it’s moving all around and I am being yanked this way and that very violently and rapidly. Hard to stay conscious while this is happening. Body goes into full dysautonomia when this happens - HR spikes to 130, whole body starts shaking, severe Dyspnea and nausea, neck muscles tighten right up, pure panic. Feels like I’m going to die. I get extremely lightheaded and delirious. And when I try deep breathing and relaxing it triggers the sensation in my neck again (feels like my neck is falling) and the cycle repeats.

These episodes were once very rare but now 2-3 days a week. I have to convince myself not to call an ambulance because the ER is useless. But feels life threatening.

Oddly I have very little pain or headache.

Any thoughts at all as to what’s going on? Nothing remarkable found on cervical MRI, X-rays, CT with contrast, or any blood work. Small 2mm overhang C1-C2 found on an X-ray by a chiropractor, but again, symptoms are worst when lying down and little pain so CCI or CSF leak don’t seem to fit.

Constant vertigo and feeling like my neck is being pulled in all different directions. Very unsettling. Feels like I’m spinning or on a boat too.

[selmaS]

Hi and welcome to the Chiari forum.
It is possible to have symptoms and not notice or experience pain or consider it a result of this condition since many of us have constant pain we consider it a normal way to feel and don't see it as a symptom.....that aside, we are all different and will experience this differently.

Have you had a CINE MRI? Have you had ALL related conditions ruled out?
With  a DX of Chiari, you should not allow a Chiropractor manipulate your cervical spine as it can cause compression of the cord and cause more symptoms to flare.

You may have brain stem or spinal cord impingement....you will have to review the reports from your MRI's you have had so far. But it sounds like you could have nerves that are being compressed causing the symptoms....I am not a medical professional...but it is where I would look to see if it  is a possibility.

[Sallaranda]

One other symptom I have that I was just now finally able to put a finger on — the Valsalva maneuver.

When anyone does the Valsalva manuever too much, they'll get lightheaded, right? Well sometimes when I'm having these episodes it feels like I'm pushing the Valsalva maneuver too far (get really lightheaded) even though I'm breathing as normally as I can.

This does make me wonder about intracranial hypotension and possibly CSF Leak.