I remember when I first got diagnosed last year I did a TH-cam search and found one of your videos, and thanks to you I found the IIHUK support group. They’ve helped me so much cause I felt so alone before
I love your positive video!!!! Im struggling with a high pressure migraine time with IIH. Its very new to me. Ive only had my neuro call me with the reaults and start me on topamax but ive been suffering with chronic mugraines with 9 years trying to get them sorted with no relief.
Jazzy Aww thank you for your lovely comment. I'm so glad it's helped you, that's really why I make them to help anyone that might be newly diagnosed because I know how scary it is to begin with and when I was diagnosed 6 years ago there wasnt anything on the internet with people talking about it xx how are you doing since being diagnosed?
Roxanna-Louise Faulkner I've been really anxious I got a lumbar puncture a couple days ago which confirmed it so I have to see my neurologist to start treatment soon
Have you ever had an MRI done with contrast (MRV)? I have a very similar experience where acetazolamide doesn't do much for me. The only thing that helps is a lumbar puncture. My doctor explained after my MRV that I actually have narrowing of the transverse sinuses in the back of my head which is most likely causing the condition. The solution is the placement of a stent to open the vein. It's a fairly new procedure so I'm hesitant but it seems less invasive than a shunt.
AK R. Hi! Have you done that new procedure? I have the same condition & I’ve done LP but unfortunately they didn’t measure the pressure of the brain & I’m not planning to do any LP cuz it hears like hell. I managed my condition after quitting Diamox! felt much better but I still feel the pressure in my head with headaches after eating anything & I can’t stop taking painkillers. Please update me 😢
I get what you mean about having it but not realising. When I was first diagnosed in June I didn't think my pressure was that high as I could tolerate the headaches but my LP Opening pressure was 42. Had another LP 6 days later and it was back to 40. First one they drained 35ml and 2nd they drained 25ml. Fortunately iv not had a low pressure headache after a LP yet. On my last LP she did poke me 3 times and on the second poke she hit a nerve that shot a burning/shooting pain down my left leg twice (ouch). Got a neurology appointment on the 4th October to go over all my results and to see how treatment is going. glad you are feeling better x
Hi, I'm so sorry for the late reply. I was locked out of my account. I will be making more videos on this! so please do keep watching. If you want me to answer any questions then let me know in the comments.
I'm so happy to hear that you're feeling better!!! I had a lumbar puncture last Thursday; I hadn't had one since 2017. My pressure was 48. The anesthesiologist took it down to 21. I feel like a new woman. No pain in my head at all! It had been so bad for so long.,. I was depressed, having some bad thoughts now and then... And was trying the Aimovig shots. HORRIBLE side effects and they don't help IIH migraines. So when he called it at 48, I felt like I had won something! I knew the headaches would be fine for at least 6 months. Now if I can just wait another 2 months for the side effects of the Aimovig to wear off, I'll be great. You are so right about being your own advocate. If one doctor won't listen, see another. I'm sorry it took you so long to get sorted. Now that it's done, I hope you feel great for a long time. Nobody should have to live with this pain.
Thankyou so much for this video. It’s so hard trying to find out about IIH. Couple weeks ago I got my eyes tested and got admitted to hospital, got a mri scan and a lumbar puncture and got diagnosed. I am still waiting to see the neurologist. I am so scared as I’m not sure how things are going to pan out. I am on 4 acetazolamide a day which isn’t making me feel great but hopefully these will work. Thank you again for your video and please keep these updates going 🤗xxx
PREACH about the migraine thing. for a year and a half i have had constant headaches and nausea and increasingly worse eye pain and problems with my eyes and i was told i had migraines ALL the time. i kept telling my mum i know this is to do with my eyes i totally agree, this can happen to anyone so if you are being told you have migraines and you don't think so, regardless of your weight because that wasn't the case for me, ask for an MRI cause it is always good to rule anything out. Thankyou for your videos, they have helped me become more aware of my illness and understand what it is and what is to come :)
emma smith aww thank you for your lovely comment. I'm glad I'm not the only one has experienced this ether! I'm glad these videos have helped you. It's a horrible condition and there needs to be more awareness xxx
Another thing that can help is starting a keto diet similar to the Atkins diet but in shot its a high Fat/Protein low Carb diet. This way of eating will not only assistant in losing weight but also help with with lowering intracranial pressure because the diet acts as a natural diuretic, it keeps your body from retaining fluids even if you're not on a low sodium diet. Do some research and talk to your doctor but it has helped me in long run.
I remember when I first got diagnosed last year I did a TH-cam search and found one of your videos, and thanks to you I found the IIHUK support group. They’ve helped me so much cause I felt so alone before
PRSC I'm so pleased they have helped you x hope you are feeling better x
I love your positive video!!!!
Im struggling with a high pressure migraine time with IIH. Its very new to me. Ive only had my neuro call me with the reaults and start me on topamax but ive been suffering with chronic mugraines with 9 years trying to get them sorted with no relief.
Thank you so much for your videos they really give me comfort since I'm newly diagnosed and scared
Jazzy Aww thank you for your lovely comment. I'm so glad it's helped you, that's really why I make them to help anyone that might be newly diagnosed because I know how scary it is to begin with and when I was diagnosed 6 years ago there wasnt anything on the internet with people talking about it xx how are you doing since being diagnosed?
Roxanna-Louise Faulkner I've been really anxious I got a lumbar puncture a couple days ago which confirmed it so I have to see my neurologist to start treatment soon
Jazzy A ah I hope everything goes well for you! Let me know how you get on!
Have you ever had an MRI done with contrast (MRV)? I have a very similar experience where acetazolamide doesn't do much for me. The only thing that helps is a lumbar puncture. My doctor explained after my MRV that I actually have narrowing of the transverse sinuses in the back of my head which is most likely causing the condition. The solution is the placement of a stent to open the vein. It's a fairly new procedure so I'm hesitant but it seems less invasive than a shunt.
K. R. I've never had MRI done with contrast. I'd be interested to find out if a stent helps. At the moment I'm only taking medication for it x
K. R. Hi can I ask what your symptoms are??
AK R. Hi! Have you done that new procedure? I have the same condition & I’ve done LP but unfortunately they didn’t measure the pressure of the brain & I’m not planning to do any LP cuz it hears like hell. I managed my condition after quitting Diamox! felt much better but I still feel the pressure in my head with headaches after eating anything & I can’t stop taking painkillers. Please update me 😢
I get what you mean about having it but not realising. When I was first diagnosed in June I didn't think my pressure was that high as I could tolerate the headaches but my LP Opening pressure was 42. Had another LP 6 days later and it was back to 40. First one they drained 35ml and 2nd they drained 25ml. Fortunately iv not had a low pressure headache after a LP yet. On my last LP she did poke me 3 times and on the second poke she hit a nerve that shot a burning/shooting pain down my left leg twice (ouch). Got a neurology appointment on the 4th October to go over all my results and to see how treatment is going. glad you are feeling better x
Krystal White thank you for your comment. I hope your treatment goes well! Let me know how you get on xx
Mam plz help me i have also diseases the IIH i cant control that moment plz tell somethink about this
Hi, I'm so sorry for the late reply. I was locked out of my account. I will be making more videos on this! so please do keep watching. If you want me to answer any questions then let me know in the comments.
I'm so happy to hear that you're feeling better!!! I had a lumbar puncture last Thursday; I hadn't had one since 2017. My pressure was 48. The anesthesiologist took it down to 21. I feel like a new woman. No pain in my head at all! It had been so bad for so long.,. I was depressed, having some bad thoughts now and then... And was trying the Aimovig shots. HORRIBLE side effects and they don't help IIH migraines. So when he called it at 48, I felt like I had won something! I knew the headaches would be fine for at least 6 months. Now if I can just wait another 2 months for the side effects of the Aimovig to wear off, I'll be great.
You are so right about being your own advocate. If one doctor won't listen, see another. I'm sorry it took you so long to get sorted. Now that it's done, I hope you feel great for a long time. Nobody should have to live with this pain.
Thank you for your lovely comment, I hope you are well! xxx
Thankyou so much for this video. It’s so hard trying to find out about IIH.
Couple weeks ago I got my eyes tested and got admitted to hospital, got a mri scan and a lumbar puncture and got diagnosed. I am still waiting to see the neurologist. I am so scared as I’m not sure how things are going to pan out.
I am on 4 acetazolamide a day which isn’t making me feel great but hopefully these will work.
Thank you again for your video and please keep these updates going 🤗xxx
Sorry for the late reply. I hope you are doing well! xx
PREACH about the migraine thing. for a year and a half i have had constant headaches and nausea and increasingly worse eye pain and problems with my eyes and i was told i had migraines ALL the time. i kept telling my mum i know this is to do with my eyes i totally agree, this can happen to anyone so if you are being told you have migraines and you don't think so, regardless of your weight because that wasn't the case for me, ask for an MRI cause it is always good to rule anything out. Thankyou for your videos, they have helped me become more aware of my illness and understand what it is and what is to come :)
emma smith aww thank you for your lovely comment. I'm glad I'm not the only one has experienced this ether! I'm glad these videos have helped you. It's a horrible condition and there needs to be more awareness xxx
Another thing that can help is starting a keto diet similar to the Atkins diet but in shot its a high Fat/Protein low Carb diet. This way of eating will not only assistant in losing weight but also help with with lowering intracranial pressure because the diet acts as a natural diuretic, it keeps your body from retaining fluids even if you're not on a low sodium diet. Do some research and talk to your doctor but it has helped me in long run.
mattrc77 I'm going to look into this, thank you! Hope things continue to improve for you!☺️