Very informative! I did want to add that I personally had symptoms for years as a skinny person, then gained a lot of weight within a few months and THEN was diagnosed with IIh. My weight gain was not the CAUSE. It sure doesn't help, but textbooks and doctors aren't understanding that sometimes you have symptoms first and THEN the weight comes on. So there's that. Thanks for the videos 👍
Hey I am doing a research on the association between obesity and ICH and I would love If I could have contact with you to ask you about your experience and maybe find another association
This same thing happened to me. And I wasn't diagnosed until after the weight gain. Also, before treatment (LP with removal of fluid and medication), I slept a lot more, had little energy, and it got so bad that I felt like I was going to lose consciousness. I can't quite explain ot, I wasn't dizzy and I wasn't faint. I just felt like I was going to collapse. In addition to the visual and hearing symptoms.
I believe if they focus on brain fat they will see it’s a blockage (I feel the same about autism) but the brain fat is causing this. But I would agree that they don’t listen. Only thing that would help us at this point is a neurologist or dr that gets it. Perhaps they will listen to another dr
I got this when I was around 10 years old. What is crazy is I’m a male and is very rare in males and especially in young males. I was overweight and what was so bad it took doctors 3 months to figure out and I have Permanent eye damage from it. I have to wear glasses now when I didn’t before. I had 55cc when they did my first spinal tap and I just felt like the earth was lifted off of me. I wish the best to all of you who are battling this right now and to all the ones who have already completed it.
I wish you drs would stop saying those all with iih are over weight. I first had it at 12 years old (not over weight) then it can back at 36 (again not over weight). Find out the cause... that would be what the focus is .. we need a cause why this happens. Medicine is so slow for conditions for women. Like iih, hashimotos, endometriosis..
I totally agree, I was skinny when I was diagnosed and I gained weight after the fact, now it’s hard to loose it and my neurologist keeps raising my dosages. They really need to find out the cause because these headaches are driving me crazy
@@ms.pixie9725 the cause is from upper cervicle instability most of the time go watch dr Ross hauser video about it his office is called caring medical center in Florida They treat and fully cure this and many other things with prolotherapy this isn’t a joke or a scam I’m serious please look him up I have this condition and start my therapy couple months
I’m on the other end of the spectrum, I am obese and it was assumed that I have IIH. In fact it was/is not. Even Drs stereotype cause they are going off textbook and their opinion. Not cold hard facts and symptoms.
I agree... I was recently diagnosed with IIH. I also have endometriosis, Adenomyosis, pcos, and Hypothyroidism....losing weight is hard with the last 2
I have this and I feel terrible everyday I’m fatigued so badly I have such bad brain fog it feels like I’m not here and my vision is so weird it’s like I can’t really see but I can see idk it’s hard to explain . This is so exhausting ruins my days and I’m young only 30 . I will start my prolotherapy at caring medial center .
My mother was diagnosed with IIH in 2006, originally they believed it to be pseudo tumor cerebri. She underwent approx 30 lumbar punctures to manage her ICP, had stents put in her brain and eventually had to go onto blood thinners because her brain rejected the stents along with multiple shunts to where her body was also reject the tubing. Corticosteroids and morphine for 10 years from 2010-2020. She passed in early 2020 from covid at the age of 47. I hope one day there will be a known cause for IIH, it's a debilitating unknown illness and I watched her suffer through many invasive surgeries and lose her mind to the pain medications. Thank you for you insight Dr Andrew, it's given me a lot of understanding.
My first spinal tap opening pressure was around 84 it shot out like a water gun at this point I had vision loss and I had a poor nurse standing on a chair trying to catch it, it was crazy my weight was normal I was not overweight I was told the contraceptive pill could have been the cause. It’s now under control and manageable.
That’s incredible, I would have expected a total blockade of blood flow through the brain with that gigantic pressure. Either that or a blood pressure that was sky high.. Do you know if they did any blood pressure monitoring?
I have IIH and had severe papilledema (now improved). I do not understand how in one breath you can use the word ‘idiopathic’ meaning no known cause, then in the next breath say that the cause is obesity??? I have seen several doctors in the UK - only one of them has ever mentioned my weight (I am around 20kg over weight). I have recently lost 5kg and am having the worst flare up since my diagnosis. Explain that!
Obesity is not the cause but a risk factor. The cause is probably a misbalance between production of CSF and drainage, although this has not been fully elucidated yet.
I had an Optic Nerve sheath fenestration done some years back after the medicine and weight loss didn't stop my vision loss problems with IIH. It got more manageable after that.
Good day Dr.Lee my wife was diagnosed of orbital pseudotumor that was after her giving birth to my 2nd baby that was year 2021 and We can't afford to treat her of any medical operation as you recommend from your videos. However we apply some of your recommendations like lossing weight and medication and that was prescribed by his opta here in the Philippines, and as we observed the swelling of her eyes was not yet disappear however her vision was normal. What would you recommend some treatments that can help for her recovery from swelling?
I take diamox 1000mg 2 times a day and I just did a LP yesterday measuring 42... meds was working and it just stopped all of a sudden. Surgery is what doc says just cuz meds stops... battling for 2 yrs now
Not if there are no mass occupying lesions in the neurocranium (the part of the skull where the brain resides) and if there is a communicating ventricular system (which should already have been excluded because of imaging and the diagnosis of IIH by u your neurologist).
Children can have iih. You should make a dr appointment. Ir is rare, but possible. I have iih it 4/100000 women over weight women, and 1/ 100000 normal weight women who get it, and its less for children. Call your pedi ans request to be seen/ then go to neuro
