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Idiopathic intracranial hypertension
Brain & Nervous System | Last Active: Nov 25, 2021 | Replies (29)Comment receiving replies
I was just diagnosed with IIH last week by my nuerologist, I see a nuero-opthomologist in a couple of days. Ive been dealing with dibilitating constant migraines that make my vision blurry and make me see random shadows since July 30 2018. I hear random clicking in my ears and have a hard time with balance. I get dizzy easily and sometimes cant guage depth or run into things. I lost my job because of it but luckily I at least have disability through my job that pays a portion of what I made. I am scared to drive more than a couple miles of my house due to my eyes playing tricks on me all the times. I have lost pretty much all of my independence and am lacking as a mom and wife because I cant be who I was because I feel miserable 24/7.
My nuerologist seems very thorough and I like her, but it had taken so long to get here it seems, like she doesnt believe how much pain I am in and the symtoms I exhibit. She reminds me at every appt each month to lose weight, but doesnt seem to grasp that I am steadily trying, but nothing is working. I am obese, and either the medication or IIH leave me where I overheat easy so I cant work out so I have been strict with diet, but the weight isnt budging. I am also wondering if the partially empty sella has something to do with the struggle to loose as your pituitary is responsible for hormones, metabolism, thyroid, etc. Basically I was prescribed Topiramate since July and now Diamox. For migraines all the triptans and diclofinacs (that dont work). She has scheduled Botox for me next week, maybe that will help.
Where does everyone recieve treatment? Maybe i can point my nuero in thier direction since IIH is so rare, I am hoping this is why she just doesnt know what/where to go with me. Thanks in advance!
Replies to "I was just diagnosed with IIH last week by my nuerologist, I see a nuero-opthomologist in..."
@rrmoss Hello, I'm a Mayo spine surgery patient, and my physical therapist made a comment recently talking about dural pressures on the brain and that Myofacial release can help that. Here's information about MFR treatment, and I do this myself. The beauty of it is that it can reach into the interconnected areas of the body and release restrictions in tight tissue and a trained therapist can feel where the tightness is in your body. When tight tissue compresses nerves it causes issues, and this opens up those spaces allowing normal function and movement. Not all doctors are familiar with this, but it is gaining acceptance. It has been able to reduce seizures in a child with epilepsy. Sometimes things are physical problems and this therapy can help so many things . Here are some links to information-
http://www.myofascialrelease.com
https://myofascialrelease.com/about/problems-mfr-helps.aspx
https://myofascialrelease.com/downloads/articles/FasciaAsALever.pdf
https://www.massagemag.com/therapeutic-insight-the-john-f-barnes-myofascial-release-perspectiverufus-the-cat-12559/
https://myofascialrelease.com/resources/mfr-talk.aspx
There are a lot of articles at this link.
https://myofascialrelease.com/resources/therapeutic-insight.aspx
Hi, @rrmoss - how did things go with the neuro-ophthalmologist?
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Hello, @rrmoss - welcome to Mayo Clinic Connect. That is a very new diagnosis of idiopathic intracranial hypertension (IIH), and hope you can connect with others here who will empathize with your situation. Having challenges with blurry vision, clicking in your ears, balance and gauging depth to the point you sometimes run into things sounds very difficult, and even more so with a job loss due to it. I am a mom and wife, too, and I'd have a hard time if I felt concerned about driving and felt I'd lost a lot of my independence as you described.
A couple of threads on Connect that may be of interest to you are:
- on migraine is https://connect.mayoclinic.org/discussion/silent-migraines/?pg=1#comment-252463
- on empty sella syndrome https://connect.mayoclinic.org/discussion/empty-sella-syndrome
You might also be interested in starting or participating in a discussion in the Diabetes & Endocrine System group https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/ related to your pituitary questions.
I'd like to invite members who have participated in this discussion previously, like @keza71 @oldkarl @aprillelain to return and offer their insights on idiopathic intracranial hypertension (IIH), as well as where they receive treatment, if applicable. I'd also like to ask members who've mentioned IIH, like @kellysieck @aprillelain @oceangirl @tracyj, to offer their thoughts for you with this new diagnosis. @johnbishop may also have some thoughts or information for you.
Do you have other questions you'd like to ask members related to idiopathic intracranial hypertension (IIH), @rrmoss?