Inter-cranial Hypertension? Freaking out massively

[JoshuaMichael]

Hi Joshua. I'm so sorry to see that you are struggling. I know how hard it is to feel that something is wrong all the time. My own HA journey began with a mistaken diagnosis of IH that turned out to be nothing (AFTER I'd gone through a lot of visual field tests and a lumbar puncture...ugh!) so I understand how scary these symptoms are. Looking through your other posts, I'm reading that you have recently seen an ophthalmologist, had an MRI fairly recently, and also that you suffer from migraines. Your symptoms sound a lot like the migraines and sinus headaches that I get from changes in barometric pressure or humidity (not sure what the weather in the UK is like, but here in the northeastern US it's been really hot and humid so I've been dealing with these fairly often). If you did have IH, it would have definitely been picked up through these tests (in my case, the Dr. thought she saw papilledema, or swollen optic nerves, which can be easily seen even through an undilated pupil. It is a "tell" symptom for IH. In my case, she didn't do a good job but I've seen had other eye exams where the doctor has told me that, in true IH/papilledema, it's obvious--not something someone could miss).

I also met the criteria for an idiopathic IH patient--a young woman of reproductive age who is overweight. It would be extraordinarily rare for a young man of your age to be suffering from idiopathic IH, and any other cause would have been picked up on the eye exams and MRI. It's important that you try to relax about this, as stress can make your migraines worse (as I'm sure you know!) and that whooshing sound can be caused by increased heart rate from stress/anger.

My dad is a doctor (just goes to show that HA can start in anyone, even when you've been growing up hearing horses not zebras your whole life!), and when I start calling/texting him asking about this or that symptom that I think I've found, asking him to look at some weird bump etc., he often asks me "What are you *really* stressed about?" I've found that when I'm able to take a step back, an increase in HA is usually related to other stressors going on in my life--like anxiety about work or school, troubles with friends or my partner etc. You've said that your symptoms began after you had an anger/panic outburst--was there something specific that caused that outburst? Can you trace other flareups of your HA to similar stressors? If you can look at the context of your everyday life when you start to feel bad, it might help you talk to your parents or counselor about how to manage your symptoms. If your parents aren't receptive, do you have a counselor or trusted adult at school/sports/other activities you could talk to about what you are feeling?

You are so young and should be out enjoying your life, not worrying about illness. I gave up so much of my youth to anxiety and I know from experience that I wouldn't want anyone else to go through this if they can possibly help it. I know how easy it is to feel like you'll never get out of the spiral, but with the right support, I think you can. I wouldn't have been able to manage my HA without having people I trusted to draw on (and to trust them to tell me when they can't help me and when I need to seek out professional help). I am keeping my fingers crossed that you are feeling well and balanced soon.

Thank you for taking the time to respond, it means alot

My parents do listen thankfully, and my next counselling starts on the 10th. Just 30 minutes ago, I just had some fluid in my ear, which I remember being another symptom of this. (CSF leak). This just completely restores my fear! Anyhow, I greatly hope I don't have it... :(

Even an hour ago I think I'm seeing a grey patch in my eyes? I'm very obsessive so I don't even know anymore:(

[rebelleepoque]

Thank you for taking the time to respond, it means alot

My parents do listen thankfully, and my next counselling starts on the 10th. Just 30 minutes ago, I just had some fluid in my ear, which I remember being another symptom of this. (CSF leak). This just completely restores my fear! Anyhow, I greatly hope I don't have it... :(

Even an hour ago I think I'm seeing a grey patch in my eyes? I'm very obsessive so I don't even know anymore:(

Not a problem! I am happy to help.

In any case, a CSF leak would not be consistent with IH--CSF leaks are actually from a loss of pressure, not increased pressure (this is why conventional treatment for IH essentially induces a false CSF leak through a lumbar puncture!) And in the case of both a CSF leak and IH, you would be very, very, sick--I won't say here what the symptoms are (please try not to Google!) but rest assured you would be miserable and unable to post to an internet forum in doubt. Those news stories we see about how someone didn't know their CSF was leaking through their nose or something like that are news stories because they are newsworthy--they are SO rare that they're worth talking about! To get clicks, which equal money, websites will post about the rarest/scariest things to draw people in. Representation online doesn't equal how often it actually appears in the population. I think it is really most likely (in fact I'd bet on it) that your ear issue is related to sinus or allergy problems that also would cause a headache.

There is some research which suggests that anxiety, and most specifically health anxiety, is closely related to obsessive-compulsive disorder. Both of these conditions are fundamentally about a fear of a loss of control; I think this is why HA sufferers, myself included, tend to default to very rare and incurable diseases like rabies, ALS, bad cancers etc. We worry about those because we worry about feeling out-of-control. So compulsive behaviors like checking our eyes, muscle movements, etc. are about trying to regain a semblance of control and order. My doctor has told me that these behaviors occur amongst people with anxiety disorders of all forms--HA sufferers, people who have panic attacks, veterans with PTSD, etc. The only thing that has helped me has been trying to "taper off" my worry--I've been able to do this with the help of lots of therapy and medication, so it might be a good thing to try. If I can feel my HA flaring up, I give myself 20 minutes a day to indulge it--I think to myself "Okay, I'll let myself check for spots in my eyes for 20 minutes. I'll let myself check my peripheral vision for 20 minutes. Then I'm going to do the things I want to do for the rest of the day." The next week, I do 10 minutes. Then the next week 5, etc.

I also try to make sure that I up trying to do things that make me feel secure and happy. For me, that's going to the movies, grabbing drinks with my friends and partner, and making sure I get enough sleep (if my anxiety is keeping me from sleeping well, I'll have some valerian tea or take melatonin). I might try to rearrange my schedule so I can finish my work and get home early. I'll listen to my favorite music or watch a stupid TV show. As I'm sure you know, anxiety can wreak havoc on our bodies. I spent ages convinced there was something wrong with my heart; it turned out that I was holding myself so tightly that it was making my chest wall hurt. We notice things that average people--or even doctors--might not notice or care about. It doesn't mean that there's anything really wrong. Our bodies produce all sorts of "noise--" an ache, a weird ear sensation, an eye flicker or spot, etc.--that doesn't mean very much. Ultimately it's just part of being a human! Part of practicing self-care is creating the conditions that allow us to help tune out that noise when we are hypervigilant.

I think you are a little young for medication atm, but it might be worth asking your counselor about some mindfulness exercises for when you are very stressed. If you are already doing some and they aren't helping, definitely mention that to your counselor as well. I am glad your parents are understanding--that helps so much! Spend some time this week doing things that make you feel good--even if you are feeling anxious while you do them, give yourself permission to notice and feel that anxiety, but keep doing the thing. I really think it will help you while you wait for your appointment!