Chiari diagnosis here. Thanks for the info! Really encouraging. Feeling at a loss. It’s been 13 long years of daily head pain/high pressure/migraine etc. Thankful to be alive after some significant head traumas but it’s quite the load each with while being momma to 3 active sweet boys 😉. God is good all the time. I pray others were blessed with growing hope while watching this video. I sure appreciated it. Felt like he was talking about me!
Thank you for this video I often have headaches when a weather front is coming and I feel very heavy and I have a headache at the front of my head and my eyes are sensitive to light. Are there any tips on ways to confront those headaches?
How about TBI and pressure headache symptoms? My heart med is also my migraine medicine, but I also get the physically drained, fatigue and brain shutdown when pressure changes. Is there anything for all of us that suffer from this?
i have these exact symptoms of a high pressure headache every single day 24/7 since october of 2022. i was diagnosed with a sinus infection and was given doxycycline hyclate and ever since the pressure hasn’t left. i’ve had a spinal tap done, mri, cat scan, and my optic nerves checked. everything was negative but the pressure and migraines just doesn’t go away. what do you recommend i do as my next step?
I have a pseudotumor as well. I was diagnosed 4 years ago. I have permanent optic nerve damage in my right eye. Now my left optic nerve is starting to swell. Nothing is working. I was almost tripled on my CSF on my last spinal tap. Diamox and Topamax are not working either ):
I think I suffer from low pressure and high pressure headaches and I seen your comment about your eye swelling ..do you feel your eyes swell when you have one of those headaches? because I know I have eye pressure pain in one of my eyes when I have one it’s never in both.. just wondering.
Yes I can if the headache is bad enough. Normally that also indicates that it is time for me to get another spinal tap due to my pressure being to high. In my experience anyways. I will say the topamax has lessened my headaches tremendously and I have not had to get a spinal tap in almost a year. Still counting hopefully, lol. Normally when my pressure is low I do not get the headaches so I think that would be more of a high pressure thing. Atleast that is what my Neurologist has told me. I would get it checked out though. I have not had vision in my right eye for over 3 years now. Once the optic nerve is damaged they cannot fix it.
Katie I have had PTC, or was diagnosed in 1999. I have had several years where symptoms were easily managed watching sodium in literally EVERYTHING I ate. Any swelling, even from allergies triggers it. My point in saying this is other medical issues surfaced causing me to go from 115 to almost 200 pounds! Yikes right!?!? That had not been resolved BUT a young and not considerate neurosurgeon insisted I needed a stent to prevent an imminent stroke. DO NOT GET A STENT TO TREAT YOUR PTC!! New terrible issues have arisen like becoming a literal barometer. (I am not kidding, everyone around me can vouch for my instant knowledge of any shift either up or down in barometric pressure. Even on a beautiful day! Changes in elevation also cause an instant Neuro-alert. I can see why this doctor says it is controversial. DO NOT DO IT! They can’t take it out without killing me and now I have widened auto immune responses from the trauma of two stents (The Neurosurgeons resident caused an intraoperative cerebral aneurysm. No evidence of that possibility on any imaging prior.) BUT, I will say this, herbal water supplements coupled with Topamax or Diamox have helped with fluid retention to prevent high CSF. But also, don’t laugh...sweating! lol I guess it’s impossible not to laugh right?? 🤣😂 There are herbal teas as well. To prevent dehydration I mix alkaline water into spring water all day. lol Just some suggestions because I feel your pain sister!! I was once told I had permanent optic never damage as well because it took a year before I was sent to a Neurologist to find it and in 1999 it was considered “rare.” That being said, after several years (like 5 or 6 I think), of managing it I did gain all of my sight back. That is not the case now but I do not think the two are related due to possible Lupus. Be encouraged! Our bodies are amazing at healing!! There are studies that show a 3 day water fast triggers your bodies stem cells to go “ham” repairing your body! It works. Trust me. Anyway, I hope something in this long rant helps Katie! 😊
Chiari diagnosis here. Thanks for the info! Really encouraging. Feeling at a loss. It’s been 13 long years of daily head pain/high pressure/migraine etc.
Thankful to be alive after some significant head traumas but it’s quite the load each with while being momma to 3 active sweet boys 😉. God is good all the time. I pray others were blessed with growing hope while watching this video. I sure appreciated it. Felt like he was talking about me!
Fellow Chiarian. DC'd 2014. Watching this today to help me get through it. I hope you're doing well!
Thank you for this video I often have headaches when a weather front is coming and I feel very heavy and I have a headache at the front of my head and my eyes are sensitive to light. Are there any tips on ways to confront those headaches?
How about TBI and pressure headache symptoms? My heart med is also my migraine medicine, but I also get the physically drained, fatigue and brain shutdown when pressure changes.
Is there anything for all of us that suffer from this?
i have these exact symptoms of a high pressure headache every single day 24/7 since october of 2022. i was diagnosed with a sinus infection and was given doxycycline hyclate and ever since the pressure hasn’t left. i’ve had a spinal tap done, mri, cat scan, and my optic nerves checked. everything was negative but the pressure and migraines just doesn’t go away. what do you recommend i do as my next step?
Can you take a water pills why you’re pregnant while having one of those headaches?
I have a pseudotumor as well. I was diagnosed 4 years ago. I have permanent optic nerve damage in my right eye. Now my left optic nerve is starting to swell. Nothing is working. I was almost tripled on my CSF on my last spinal tap. Diamox and Topamax are not working either ):
I think I suffer from low pressure and high pressure headaches and I seen your comment about your eye swelling ..do you feel your eyes swell when you have one of those headaches? because I know I have eye pressure pain in one of my eyes when I have one it’s never in both.. just wondering.
Yes I can if the headache is bad enough. Normally that also indicates that it is time for me to get another spinal tap due to my pressure being to high. In my experience anyways. I will say the topamax has lessened my headaches tremendously and I have not had to get a spinal tap in almost a year. Still counting hopefully, lol. Normally when my pressure is low I do not get the headaches so I think that would be more of a high pressure thing. Atleast that is what my Neurologist has told me. I would get it checked out though. I have not had vision in my right eye for over 3 years now. Once the optic nerve is damaged they cannot fix it.
Katie I have had PTC, or was diagnosed in 1999. I have had several years where symptoms were easily managed watching sodium in literally EVERYTHING I ate. Any swelling, even from allergies triggers it. My point in saying this is other medical issues surfaced causing me to go from 115 to almost 200 pounds! Yikes right!?!? That had not been resolved BUT a young and not considerate neurosurgeon insisted I needed a stent to prevent an imminent stroke. DO NOT GET A STENT TO TREAT YOUR PTC!! New terrible issues have arisen like becoming a literal barometer. (I am not kidding, everyone around me can vouch for my instant knowledge of any shift either up or down in barometric pressure. Even on a beautiful day! Changes in elevation also cause an instant Neuro-alert. I can see why this doctor says it is controversial. DO NOT DO IT! They can’t take it out without killing me and now I have widened auto immune responses from the trauma of two stents (The Neurosurgeons resident caused an intraoperative cerebral aneurysm. No evidence of that possibility on any imaging prior.) BUT, I will say this, herbal water supplements coupled with Topamax or Diamox have helped with fluid retention to prevent high CSF. But also, don’t laugh...sweating! lol I guess it’s impossible not to laugh right?? 🤣😂 There are herbal teas as well. To prevent dehydration I mix alkaline water into spring water all day. lol Just some suggestions because I feel your pain sister!! I was once told I had permanent optic never damage as well because it took a year before I was sent to a Neurologist to find it and in 1999 it was considered “rare.” That being said, after several years (like 5 or 6 I think), of managing it I did gain all of my sight back. That is not the case now but I do not think the two are related due to possible Lupus. Be encouraged! Our bodies are amazing at healing!! There are studies that show a 3 day water fast triggers your bodies stem cells to go “ham” repairing your body! It works. Trust me. Anyway, I hope something in this long rant helps Katie! 😊