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I still have vasovagal syncope and OI but my POTS is not very apparent anymore. (Mestinon helped). I also have hypermobility syndrome. (not diagnosed yet for EDS)
I often feel fullness/pressure in my head and many times headaches will start or get worse when lying down.
With systolic blood pressures averaging in the 90’s, and ocular pressure not being flagged, is it still possible to have inter cranical hyPERtension – IIH?
Any insight welcomed. Thanks!I still have vasovagal syncope and OI but my POTS is not very apparent anymore. (Mestinon helped). I also have hypermobility syndrome. (not diagnosed yet for EDS)
I often feel fullness/pressure in my head and many times headaches will start or get worse when lying down.
With systolic blood pressures averaging in the 90’s, and ocular pressure not being flagged, is it still possible to have inter cranical hyPERtension – IIH?
Any insight welcomed. Thanks!Hi Charlie1, ABSOLUTELY!!! I am not unlike you in presentation. Do you have the symptoms of hydrocephalus? Do you have an MRI we could peek at? That would help. Is your headache in the back base of your head, radiating down your neck to the tops of your shoulders? Are you easily motion sick? Do you have light, sound, motion sensitivity? Nausea? Dizziness? Is your headache worse when you first wake up? All of these are clues. Happy to talk you through it! 😉
Hi Dr. Diana, I had an MRI done over a year ago locally and also one done 8 months ago at a teaching hospital when ruling out epilepsy. I will have to find out how to acquire the actual images. If I do indeed get a hold of these, how do I send them to you? I do though have the radiologist report of the 1st MRI stating that I have a ‘deviated pituitary stalk’ but otherwise unremarkable presentation.
Also, there are fundus images from May that I can try and get and send as well if you like. Apparently my optic pressures were 21 and 22 but because my cornea is ‘very thick’, I have not been flagged for potential glaucoma. Also papillodema was not found.
HYDROCEPHALS SYMPTOMS- I have all of those you mention although not always within the same day. I’ve always been headache/migraine prone but especially since a car accident 9 yrs ago leaving me still dealing with chronic neck issues from the whiplash and now headaches that are almost always in the occipital area (right especially). Lying flat is not good for me…feel sick and or get headache. My physio therapist believes my headaches are due to the tight upper muscles coming into play when I CONSTANTLY dislocate/subux my elbows which then causes my wrists and shoulders to also come out of joint. Every single day this has happened since I became more mobile when my POTS improved February 2013.
Sorry for the long post-trying to give you relevant information to help you assess my situation.
Depending on testing costs, my husband will accompany me to Texas if follow up is warranted in order to help me find headache relief and joint stability.(considering prolotherapy as the daily ‘pop outs’ are getting ridiculous)Thanks a ton! Charlie
Regarding the relationship between joint hypermobility and IIC – I have always been hypermobile, especially the arm joints, hip and jaw. (hubby says if I quit talking, at least that joint would be remedied. Hmm). For whatever reason, the hypermobility seems to have gotten worse since POTS.
Hi Dr. Diana, I had an MRI done over a year ago locally and also one done 8 months ago at a teaching hospital when ruling out epilepsy. I will have to find out how to acquire the actual images. If I do indeed get a hold of these, how do I send them to you? I do though have the radiologist report of the 1st MRI stating that I have a ‘deviated pituitary stalk’ but otherwise unremarkable presentation.
Also, there are fundus images from May that I can try and get and send as well if you like. Apparently my optic pressures were 21 and 22 but because my cornea is ‘very thick’, I have not been flagged for potential glaucoma. Also papillodema was not found.
HYDROCEPHALS SYMPTOMS- I have all of those you mention although not always within the same day. I’ve always been headache/migraine prone but especially since a car accident 9 yrs ago leaving me still dealing with chronic neck issues from the whiplash and now headaches that are almost always in the occipital area (right especially). Lying flat is not good for me…feel sick and or get headache. My physio therapist believes my headaches are due to the tight upper muscles coming into play when I CONSTANTLY dislocate/subux my elbows which then causes my wrists and shoulders to also come out of joint. Every single day this has happened since I became more mobile when my POTS improved February 2013.
Sorry for the long post-trying to give you relevant information to help you assess my situation.
Depending on testing costs, my husband will accompany me to Texas if follow up is warranted in order to help me find headache relief and joint stability.(considering prolotherapy as the daily ‘pop outs’ are getting ridiculous)Thanks a ton! Charlie
Hi Charlie! Can you send the MRI’s to me at 1468 Sand Hill Court, Roanoke, TX 76262? The fundus photos, unfortunately won’t help me, as I’m doing something a bit different with those and need to use a couple of different instruments. Cool? I won’t charge you for this testing, OK? I’ll email some additional info. If, indeed, hydrocephalus is part of your issue, we will certainly help with your headaches! This won’t affect joint stability, however (but we’ll get there! I have that slated as the third clinical trial! 😉
Hang in, my friend,
Diana
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