Severe and worsening autonomic symptoms after lumbar puncture — could this still be a CSF leak?
sorry for the long response, i’m desperate. I feel like my life is over. any advice is greatly appreciated as i’m extremely lost.
I’m a 19-year-old female, and I had a lumbar puncture on January 8th of this year. It was guided with an x-ray, felt nothing but a bit of pressure with needle going in, but I did feel a weird sensation in my head as they took the fluid. immediately after the procedure the headache started.
For about eight days afterward, I had an excruciating positional headache. Sitting or standing caused unbearable pressure and pain, and I could barely lift my head without immediately needing to lie completely flat again. Even turning onto my side made the headache worse, but lying flat caused intense pain between my shoulder blades, so I was constantly trying to find a position I could tolerate.
The severe headache eventually went away on its own, but almost immediately afterward I developed a completely different set of symptoms. Being upright started causing severe air hunger, an increased heart rate, pressure in the back of my head, and a strange weak or heavy feeling in my neck. Wearing a neck pillow helped slightly because it felt difficult to support my own head. The air hunger and pressure in the back of my head improve when I lie down.
I also started experiencing obvious blood pooling as soon as I stood up. My lower legs, feet, arms, and hands change color very quickly. My hands can become bright red with white patches, and my feet also become very red. My hands and feet are frequently freezing cold, but at other times they become extremely sweaty. My veins also become much more visible when I am upright.
At the beginning, I constantly felt like I needed to drink water or eat something, almost like my body was desperate for fluids or energy. More recently, I have developed very little appetite, which makes it difficult to eat consistently even though not eating can make the symptoms worse.
I had already spoken to my neurologist, but he would not perform or refer me for a blood patch. A few weeks later, he referred me to a cardiologist, who diagnosed me with orthostatic hypotension and sent me to physical therapy. At that point, my symptoms were still better in the morning and became worse later in the day. I did not feel well while upright, but I could still attend physical therapy in the mornings and tolerate some activity.
Physical therapy eventually ended without improving my symptoms. After that, we mostly waited to see whether my body would recover naturally. Several more months passed, and instead of recovering, I gradually became much more limited.
I was also evaluated for thoracic outlet syndrome because testing showed compression around my neck and upper chest. I did have neck problems and episodes of head pressure before the lumbar puncture, which was originally why I had the procedure. I wanted to rule out idiopathic intracranial hypertension, but the lumbar puncture did not show IIH. My doctors now think some of my original symptoms may have been related to my neck. I have a very straight cervical curve and extremely tight neck muscles, but the muscle guarding and neck weakness became significantly worse after the lumbar puncture and have stayed that way.
The pressure symptoms I had before the procedure have also changed. I no longer experience the same type of head-pressure episodes I had before. Now I sometimes feel pressure in the back of my head while standing, along with neck weakness. When I lie down, I can develop pressure in the front of my face, especially inside my nose and between my eyebrows. That facial pressure can disappear almost immediately when I stand back up. My ears also pop frequently. I still have some pain between my shoulder blades and occasional lower-back pain around the area where the lumbar puncture was performed.
My vision has also changed. There is a constant grainy or static-like layer over everything I see, and my pupils do not seem to dilate properly in darkness, so I have difficulty seeing at night. Bright lights and stores are extremely difficult for me to tolerate. Going into a store can trigger visual overload, dizziness, a near-fainting response, and a severe full-body crash.
I now experience dizziness that feels like I am standing or walking on a boat. My balance feels uncoordinated, and I sometimes feel as though my body does not know where it is in space. My blood pressure can appear normal while standing, but my heart rate increases and my entire body feels extremely unwell.
At this point, almost any upright activity can trigger a crash. Even sitting at my computer or being out of bed for a short period can cause severe fatigue, heaviness, weakness, and an unbearable restless or anxious feeling throughout my muscles, almost like I constantly need to stretch. During these crashes, it genuinely feels like my body is shutting down. I am mostly bedbound now, even though earlier in this illness I could still sit at my computer, attend appointments, and tolerate more activity.
I usually feel slightly better in the morning, although I am still symptomatic. Everything becomes worse later in the day, and my symptoms flare severely around my period. The fact that this has become progressively more disabling over the past seven months is what scares me the most.
I feel like I developed severe autonomic dysfunction after the lumbar puncture, but I do not know whether I still have a CSF leak, whether the original leak triggered POTS or another form of dysautonomia, an autoimmune response, damage to autonomic nerves, small fiber neuropathy, or whether months of being mostly inactive have made the original problem much worse. I also do not know whether the unusual positional pressure, ear popping, vision changes, pupil symptoms, and continued back pain could still be related to abnormal CSF pressure.
Has anyone experienced severe or progressively worsening autonomic symptoms after a lumbar puncture or post-dural-puncture headache? Did you still have a leak after the original severe positional headache improved or changed? Did anyone experience blood pooling, visual snow, abnormal pupil dilation, air hunger, balance problems, or severe activity crashes? What specialist, imaging, autonomic testing, or treatment finally helped you get answers?