I'm so glad to see this new video! I was about to send you a message to make sure you're ok. I was finally diagnosed with IIH and had a lumbar puncture yesterday. I am pretty miserable at the moment with back pain, headache, and some nausea. I hope I can tolerate the Diamox. I'm already feeling some side effects. Your videos are extremely helpful and informative. I also appreciate that you are honest, but maintain a positive attitude. Thank you!
Ive been suffering with the same Sinus issues as you and just found out about Dupixent. Gonna see my doc next week and hope to god I will be able to breath and smell again! Prednisone is amazing too but you just cant take it for very long.
Did you by any chance have a heavy head? I am not sure if I have pressure or not. I got a brain MRI done and they found a partial empty sella. They said it might cause IIH. However, I have no other symptoms except head heaviness especially mid head and nausea. Also, I went to the optometrist and my eye pressure seemed within range. I was told my eyes are fine. So im wondering what I could have.. 😢
Enjoyed the video. I feel for you. We are almost the save equally in time frame as far as nasal polyps go. I don't have the other medical problems you spoke of. I've had 3 sinus surgeries all for polyps. Last one being October '19. 6 weeks after that surgery I lost my smell completely again and can't taste. Chronic sinus infections that antibiotics won't kill. All this stems from allergies and an over active immune system. Got approved for Dupixent and my first got is this week. What is the name of the support group on Facebook called you mentioned?
Its called "The Samters Society: AERD - Samter's Triad Support Group" It has a long name, but its a super helpful group! I hope dupixent works for you🤗
@@JaymeeCisneros omg! I just saw your video where you did your nasal rinse and use tap water. That's a no-no. Your a bad girl. 🤨 I haven't forgotten to heat the water up and that hurts like a pain you can't believe. 😱
@@anthony1374 I actually need to update thay video! After it was posted I got emails and dms saying why tap water is bad. I now use purified water for nasal rinses😊
Thanks for sharing your experiences with IIH in so much detail. Can you help me with a curiosity, when you have a headache crisis, do you also feel a big pressure on the top of your nose?
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I'm so glad to see this new video! I was about to send you a message to make sure you're ok. I was finally diagnosed with IIH and had a lumbar puncture yesterday. I am pretty miserable at the moment with back pain, headache, and some nausea. I hope I can tolerate the Diamox. I'm already feeling some side effects. Your videos are extremely helpful and informative. I also appreciate that you are honest, but maintain a positive attitude. Thank you!
Recovery from a lumbar puncture can definitely be brutal, I hope you feel better soon! Thank you so much, this comment made my day❤
Ive been suffering with the same Sinus issues as you and just found out about Dupixent. Gonna see my doc next week and hope to god I will be able to breath and smell again! Prednisone is amazing too but you just cant take it for very long.
Dupixent helped me a lot toooo
@@deliavela8377 Side effects scare me. What’s been your experience? Have polyps shrunk?
@@ANewKindaGuy They wouldn't give it to me, I'm gonna try again this week :(
So, the narrowing of the sinus in the brain wasn’t shown on the “regular” Head MRI (not the Head MRV) that you had gotten done?
Yes! The MRI looks for masses like tumors. The MRV looks at the sinuses, and they inject eye to see those sinuses in the brain.
@@JaymeeCisneros
They inject an "eye"...Got it.
Did you by any chance have a heavy head? I am not sure if I have pressure or not. I got a brain MRI done and they found a partial empty sella. They said it might cause IIH. However, I have no other symptoms except head heaviness especially mid head and nausea. Also, I went to the optometrist and my eye pressure seemed within range. I was told my eyes are fine. So im wondering what I could have.. 😢
Enjoyed the video. I feel for you. We are almost the save equally in time frame as far as nasal polyps go. I don't have the other medical problems you spoke of. I've had 3 sinus surgeries all for polyps. Last one being October '19. 6 weeks after that surgery I lost my smell completely again and can't taste. Chronic sinus infections that antibiotics won't kill. All this stems from allergies and an over active immune system. Got approved for Dupixent and my first got is this week. What is the name of the support group on Facebook called you mentioned?
Its called "The Samters Society: AERD - Samter's Triad Support Group"
It has a long name, but its a super helpful group! I hope dupixent works for you🤗
@@JaymeeCisneros omg! I just saw your video where you did your nasal rinse and use tap water. That's a no-no. Your a bad girl. 🤨 I haven't forgotten to heat the water up and that hurts like a pain you can't believe. 😱
@@anthony1374 I actually need to update thay video! After it was posted I got emails and dms saying why tap water is bad. I now use purified water for nasal rinses😊
@@JaymeeCisneros Glad to hear. In that video your sinuses were wide open. I can't even get 1/4 of the amount now. Polyps suck.
Thanks for sharing your experiences with IIH in so much detail. Can you help me with a curiosity, when you have a headache crisis, do you also feel a big pressure on the top of your nose?
Have you ever tried b12 injections? Apparently b12 deficiency even if serum levels are low or normal can cause intracranial hypertension.