Hey this was a great video! You explained everything so well. I was diagnosed with this several years ago. I would like to mention a treatment option you left out at the end of your video that I personally did. It’s called venous sinus stenting. Not all patients will qualify and it depends on the severity of the stenosis but it’s a great option that isn’t discussed enough for people with IIH.
Excellent Video. This past year, I was diagnosed with lupus, Antiphospholipid Syndrome, poly-Inflammatory arthritis, Ehlers Danlos Syndrome, Dysautonomia, and immunodeficiency disease after suffering for years. After speaking with my doctor, I will likely be diagnosed with IIH in the near future. A few notes I wanted to share: Many of the people diagnosed with IIH - who I have met on forums almost all also have autoimmune diseases, dysautonomia, and/or other chronic diseases. Dysautonomia seems to be very common followed by a range of connective tissue diseases. Vision Dysmorphia - specifically metamorphopsia (flat/square objects like a cell phone or straight lines appear in waves or curved/bowled) is very common symptom as well. I have periods of either metamorphopsia in both eyes or lightening flashes in either my right eye or both eyes - but more commonly in both of my eyes. In regard to the lightening flashes, sometimes they appear in my peripheral vision and other times in my center vision. Before either the lightening flashes or metamorphopsia starts, I’ll experience floaters for at least a few days immediately followed by either recurrent lightening flashes or metamorphopsia (which lasts approximately between 1-2 weeks). Other symptoms I have that are or maybe related to IIH include: - ringing tinnitus - pulsating tinnitus (I can hear what I assume is my heart beat pulsating loudly, especially when lying on my side with my head on a pillow). - swoosh noises - Frequent traditional headaches are common but I also get just pressure headaches in my forehead and in the back of my head. - Daily, I feel pressure behind my eyes and it’s usually uncomfortable even to move them especially side to side. I have never had a headache or migraine with the vision distortion simultaneously. - Body tremors/vibrations Currently, I am 45. In my early 30s, I experienced a strange neurological episode. As a result, I had a lumbar puncture which actually led to me developing meningitis within 2 days of the puncture. Although I have no idea if that is somehow connected to what I am experiencing presently, I sometimes wonder. Most of my IIH symptoms started when I have my third case of COVID-19 - similar to my Dysautonomia symptoms. Also, I am about 10 pounds overweight. I was in perfect shape before all of the chronic diseases became progressively worse. In my case, I don’t think weight has anything to do with it.
Very helpful, all the information was what was diagnosed to me, the symptoms are exactly what I am experiencing, with sleeplessness and nausea added to the annoying ringing in the head. Started off like i had something crawling in my skull and following with episodes of poinding foggy headaches, tinnitus, tests, scans, EEGs, MRIs, CTs , Lumbar Puncture and now medications and weight loss management
found this channel this morning, I feel like I found some sort of treasure. and shared this treasure to my circle. more more love to your videos. pretty close to 1mil, great great blessing s to you 😊❤❤
thank you so much sir for this great lecture just yesterday i was going through this particular disease and it was a bit confusing. thanks to you everything is clear now. i am looking forward to more neuro lectures :) sorry for the my bad English :(
I was diagnosed with this today following 3 months of doctors visits, MRI, lumbar puncture. Why does a low sodium diet help? I’ve taken 1 +/- teaspoons of Celtic sea salt in food/water each day for the last few months due to suspected low cortisol. Wondering if my increased sodium intake has been too much or if I should reduce my sodium intake???
Welcome to the club! Not a particularly desired club lol but you won’t find many members in your everyday life. I’ve been a diagnosed member since Oct 2019, but who knows how long I’ve actually had it; the full scope of it too - IIH with papilledema. Had my shunt placed in July 2022, so definitely have answers you may not find online.
@@hakimmorrison1531how are you feeling since the shunt. I have had all these mentioned diagnosis and am currently on the medication and under weightloss management. Hoping for a miracle
CVI, jugular restriction in the neck is another possible cause. This creates a back pressure which prevents the CSF from diffusing into the venous sinuses.
Tinnitus is fasinating topic... so many people have idiopathic tinnitus, maybe some humans are sensitive to something else, that is perceived as tinnitus ? EMF energy fields ? Gravity ? :-)
@@Leash23 doctor stop giving me that. now i consume Propanolol 1/2 tablet 2x per day. no significant changes, i am getting tired, it's been 13 months with pulsatile tinnitus
You're lectures are the only ones online that makes me feel 20 minutes are like 5 minutes , I love your video doctor thx for uploading
My daughter just got diagnosed with this, we actually have neurological appt in2 days… praying for help she’s 25 and dS.. now this!
Hey this was a great video! You explained everything so well. I was diagnosed with this several years ago. I would like to mention a treatment option you left out at the end of your video that I personally did. It’s called venous sinus stenting. Not all patients will qualify and it depends on the severity of the stenosis but it’s a great option that isn’t discussed enough for people with IIH.
Excellent Video. This past year, I was diagnosed with lupus, Antiphospholipid Syndrome, poly-Inflammatory arthritis, Ehlers Danlos Syndrome, Dysautonomia, and immunodeficiency disease after suffering for years. After speaking with my doctor, I will likely be diagnosed with IIH in the near future.
A few notes I wanted to share:
Many of the people diagnosed with IIH - who I have met on forums almost all also have autoimmune diseases, dysautonomia, and/or other chronic diseases. Dysautonomia seems to be very common followed by a range of connective tissue diseases.
Vision Dysmorphia - specifically metamorphopsia (flat/square objects like a cell phone or straight lines appear in waves or curved/bowled) is very common symptom as well. I have periods of either metamorphopsia in both eyes or lightening flashes in either my right eye or both eyes - but more commonly in both of my eyes. In regard to the lightening flashes, sometimes they appear in my peripheral vision and other times in my center vision. Before either the lightening flashes or metamorphopsia starts, I’ll experience floaters for at least a few days immediately followed by either recurrent lightening flashes or metamorphopsia (which lasts approximately between 1-2 weeks).
Other symptoms I have that are or maybe related to IIH include:
- ringing tinnitus
- pulsating tinnitus (I can hear what I assume is my heart beat pulsating loudly, especially when lying on my side with my head on a pillow).
- swoosh noises
- Frequent traditional headaches are common but I also get just pressure headaches in my forehead and in the back of my head.
- Daily, I feel pressure behind my eyes and it’s usually uncomfortable even to move them especially side to side. I have never had a headache or migraine with the vision distortion simultaneously.
- Body tremors/vibrations
Currently, I am 45. In my early 30s, I experienced a strange neurological episode. As a result, I had a lumbar puncture which actually led to me developing meningitis within 2 days of the puncture. Although I have no idea if that is somehow connected to what I am experiencing presently, I sometimes wonder. Most of my IIH symptoms started when I have my third case of COVID-19 - similar to my Dysautonomia symptoms.
Also, I am about 10 pounds overweight. I was in perfect shape before all of the chronic diseases became progressively worse. In my case, I don’t think weight has anything to do with it.
Very helpful, all the information was what was diagnosed to me, the symptoms are exactly what I am experiencing, with sleeplessness and nausea added to the annoying ringing in the head. Started off like i had something crawling in my skull and following with episodes of poinding foggy headaches, tinnitus, tests, scans, EEGs, MRIs, CTs , Lumbar Puncture and now medications and weight loss management
You are my most favourite medical channel & have helped me so much with my degree. Thankyou !!!!❤
The brain imaging usually show empty or partially empty sella as well as flattened optic discs
Transverse sinus stenting should be added to this as well. Thank you for sharing I was diagnosed 2 years ago and still fighting.
found this channel this morning, I feel like I found some sort of treasure. and shared this treasure to my circle.
more more love to your videos.
pretty close to 1mil, great great blessing s to you 😊❤❤
Very helpful and excellent explanation, thank you
Excellent video. Very high quality
thank you so much sir for this great lecture
just yesterday i was going through this particular disease and it was a bit confusing.
thanks to you everything is clear now.
i am looking forward to more neuro lectures :)
sorry for the my bad English :(
I was diagnosed with this in 2002.
How are you doing? Can you please tell me how are you doing? Sounds very scary.
I was diagnosed with this today following 3 months of doctors visits, MRI, lumbar puncture. Why does a low sodium diet help? I’ve taken 1 +/- teaspoons of Celtic sea salt in food/water each day for the last few months due to suspected low cortisol. Wondering if my increased sodium intake has been too much or if I should reduce my sodium intake???
Was your MRI clear?
Nice introduction
Note Paton is pronounced with a long A after the luminary Dr. David Paton.
I have been diagnosed with this last month it was shocking I’m taking diamox I hope it goes well
How are you now.. Does medicines helps?
Did the diamox help?
I was diagnosed with this yesterday. My ICP is 34cm instead of
Welcome to the club! Not a particularly desired club lol but you won’t find many members in your everyday life. I’ve been a diagnosed member since Oct 2019, but who knows how long I’ve actually had it; the full scope of it too - IIH with papilledema. Had my shunt placed in July 2022, so definitely have answers you may not find online.
@@hakimmorrison1531how are you feeling since the shunt. I have had all these mentioned diagnosis and am currently on the medication and under weightloss management. Hoping for a miracle
How are u feeling now, I hope you are much much better. The ringing of the ear and nausea and dizziness are my worst
Do you hear swooshing too ? I’m not diagnosed but the symptoms are like this
Me too! I’ve got 3 kids and the headaches shut me completely down
Very nicely explained ❤
JJ Medicine upload 🔥
Thanks for this 😊
Is there a way I can contact you? I have been looking for a provided email but I didn't find one.
CVI, jugular restriction in the neck is another possible cause. This creates a back pressure which prevents the CSF from diffusing into the venous sinuses.
How do you hep that. I have that bad
Tinnitus is fasinating topic... so many people have idiopathic tinnitus, maybe some humans are sensitive to something else, that is perceived as tinnitus ? EMF energy fields ? Gravity ? :-)
I get spasms and dizzy....
my doctor giving me topiramate, been 2 months now
That’s what I got. Disgraced a month ago
@@Leash23 doctor stop giving me that. now i consume Propanolol 1/2 tablet 2x per day. no significant changes, i am getting tired, it's been 13 months with pulsatile tinnitus
Also topical Tretinoin cream unfortunately.
👍
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Anyone here through doxycycline??
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@@kimtaetaesbootifulface8998 how long you been suffering?