I am a 53 y/o female with chronic morning headaches relieved by getting out of bed. BMI=24.
In ~mid-2020 I started to experience right eyelid swelling that would wake me up in the middle of the night. I also felt that I could not see out of the right eye. I saw Ophthalmology for this and was found to have anormal exam. Was also having paresthesias in various limbs.
Toward the end of 2020, I started feeling like I was being smothered and would wake up in a panic to sit up, as I thought my heart was going to stop beating. I felt that my face was getting swollen and therefore I had imaging to make sure I didn’t have a mediastinal mass. CT chest was unremarkable. I then started waking up feeling a lot of pressure in my face and I would have to sit up to “drain” the blood out of my face. I started to sleep upright (30-45 degrees). I noticed that if my chin fell toward my chest, symptoms of feeling like my heart would stop beating if I did not sit up were much worse. The best way I describe this is that I felt that no blood was getting to my heart or circulating. I would wake up in a panic and sitting up would relieve this sensation.
A couple years after, I was also having pulsatile tinnitus if I slept in certain positions and this would indicate to me that I needed to lay on my back. Turning my head to the right caused a sensation of pressure (not really pain). I wake up many times to reposition/“drain my face” in order to avoid the headaches and tinnitus. After extensive internet searches about my symptoms, I came across the diagnosis of Styloidogenic Jugular Venous Compression.
I have seen two neurologists, rheumatology, 2 ophthalmologists, 2 ENTs, and an audiology. Tomorrow I see Dr. Hepworth, next week Dr. Fargen and then Dr. Hui in August.
Summary of my symptoms:
2020-2023:
-Eyelid swelling at night started in mid 2020. Felt like my eyelid was glued shut. I had to physically open my right eye some nights. When I opened the eye I felt that I could not see well out of my right eye. Standing up relieved these symptoms.
-Feeling that blood stays in my face/pressure over maxillary sinuses. This caused me to have to mouth breathe. I could hear my heart beat in my head if I lay on my side.
-I had to start sleeping sitting up with head turned to the left side and head back in order to avoid pressure in my face. I would sleep a few hours at a time before I needed to sit up and reposition. This relieved the visual disturbance issues and decreased the eyelid swelling.
-Dizziness when standing up during the night during an episode of facial congestion
-Numb arms. Sometimes numb legs at night
-Headaches which have improved since sleeping sitting up w my head back and slightly to the left. Headaches are on my temples and anterior maxillary region.
-Pressure when I turn my head to the right and look down—eye seems to swell in that position if I fall asleep. At one point, this head position would cause my upper eyelid to visibly twitch and I was unable to fully open the right eyelid (August 2022). Nowlooking down and to the right causes dizziness and I feel like I will pass out.
-I would wake up in a panic feeling that I had to sit up or I will die. It felt like my heart rate was so low that my heart could stop beating. Symptom relief when I would sit/stand up. I could feel the blood draining from my face
-Right tongue numbness (tip of my tongue) when I look down too long or if I am in a bad sleeping position
-Interestingly, grey hair primarily on the right side of my head and on the back of the crown of my head
2023: Started having worsening high pitched tinnitus in both ears. Saw Audiologist/ENT. No cause found.
-Excessive thirst/feeling dehydrated at night. I wake up at night to drink ice cold water.
-Dehydration exacerbates my symptoms so I rarely drink alcohol and almost never at night. I am terrified of taking anything that will cause me to not be able to wake up (like sleeping pills or excessive alcohol).
2024: More trouble sleeping on my side which results in being able to hear my heartbeat so have to sleep on my back. I know when my head is in a bad position due to the pulsations in my ears. Started sleeping on my back and on many pillows all the time. Headaches over temples are severe after being asleep a few hours. Improve upon sitting up but return when I lay back down to sleep. Right neck discomfort just below the angle of the jaw with certain positions (chin down; turning my head to the right while looking down; or raising my right arm).
2025: -headaches are more severe.
-Cannot sleep on my side anymore because my heart rate drops.
-If I look down and to the right I get very dizzy fairly quickly.
-Numbness in tip and right side of tongue more pronounced
-Lifting right arm is uncomfortable to my neck and causes pressure in my face. I can do it for short amount of time.
-I believe I am getting about 4 hours of sleep per night. I sometimes fall asleep for about an hour on the sofa in the evenings after dinner. I cannot physically stay awake unless I am up and doing something.
I have had 3 episodes of severe upper abdominal pain with vomiting over the past 2 years. Lots of food in my stomach as if my stomach was not emptying at all.
