IIH or silent migraines anyone ?

[Elasticatedwaist]

Hi ,
I had a diagnosis of chronic silent migraine a few years ago but I’ve never really felt confident that it’s right. The symptoms have been pressure in my head that goes from very mild to very bad .I get a strange feeling that also happens sometimes, almost like my head is Inflating for a few seconds. ( sounds weird I know !)
I feel spaced out , everything feels too bright and I get floaters.
I can hear my heart beat whooshing in my ears and when I stand up or bend down to a shelf or something my vision goes all dark for a second or two. I get really tired and my head feels uncomfortable.
I can’t put my head down ( tried yoga) without it feeling so pressured it might burst and anything energetic ( tried running ) sets off the pressure and gives me a headache.
There is a definite worsening around periods , some days (though not many) my head feels ok.
Because I’m slim, it seemed cyclical and I hadn’t any optic nerve swelling the neuro said It wasn’t IIH
This last few weeks I’ve been getting constant head pressure and pain. Memory is really bad . Nausea at times and my vision is worse than usual . It could just be my age but I suddenly can’t read close up so well.
Im 46 and have also been having a dry mouth ,not sleeping as I used to and having anxiety in the morning when I wake up.
Am i perimenopausal and getting worse migraines or have I got IIH ?
I know no one can diagnose here and I’ve got a doctors appointment and an opticians appointment in a couple of weeks but if anyone who has IIH could give me their thoughts ? Ive just always thought something didn’t quite add up with the silent migraine thing.

I also forgot to mention that I get a runny nose all the time despite being allergy tested and having had several ENT appointments where they could find nothing wrong nor any of the nasa sprays offered made a difference. Comes in phases and drips water like a tap.

I have IIH and get similar symptoms.

When you say it's cyclical does it come in any pattern I.e near your period.

Is was very slim when first diagnosed. The idea that you need to be fat is a dangerous misconception.

Is your head worse in the morning g or after lying down?

It has always got worse in the lead up to periods but now it seems to be any time. This week my head feels worse than it’s ever done and is showing know sign of going away which is worrying me .
I think it may be worse lying down. I sleep propped up at night because it just feels better somehow.

I get similar around my period and it's low iron. Have you had your levels checked?

I don't have all the same symptoms but the whooshing etc when standing up and the head pressure is similar.

It could be other things but sounds like it could be IIH. I'd be demanding a second opinion if I was you.

I get my iron checked quite often as I do have a tendency to become deficient. It’s definitely a lot worse when my iron is low but I know it’s within range at the moment.

Have a look at POTS. Some of your symptoms sound related to this

You could always ask for a lumbar puncture which would give you a definite answer if you’ve got iih,
Ask for bloods from your dr and maybe a 24 hour blood pressure monitor.

Do a headache & period diary and write down which medication you’re taking for the pain,

Just seen your post, and noticed you have a runny nose, have you been checked for a csf leak?

I don't know about IIH, but you definitely have symptoms of silent migraine.

What a coincidence to read this post, as I have something similar...it seems to get worse with lack of good sleep...which, unfortunatley, I seem to have always the last two years since having my third baby. I fully breastfed and she woke a few times a night until 13 months, and then just once a night until 15 months when we stopped. But I continue to wake at night, so never get a full nights sleep. I hear a whooshing sound in my right ear...and most days feel slight pressure in my head, that is felt more when bending over or sometimes when lying down. But then some days its fine....I have started taking vitamins. Sometimes, its barely noticeable, and then I wonder if its mostly in my head...although, I know I am not completely imagining....but I do have issues with worrying about every single tiny thing and focusing on it always, until I find the next thing to focus on and then the last thing vanishes...

Sorry for my rambles....and not much help....but just wanted to comment, as I am going through something similar.

Also, I just googled IIH and I wonder if that is what I have? I did have issues with my Blood pressure, which is now sorted with exercise and modifying my diet....although I am not 100% strict on my diet, now that my BP is within normal levels. I also started taking b12 which helped my BP and I did the 24 hour BP monitoring....

Have you tried cutting the below?

Triggers
Silent migraine can be set off by the same things that cause painful ones. What and how you eat are common triggers, such as:

Caffeine
Alcohol
Chocolate
Nuts
Pickled foods
Foods or drinks with the amino acid tyramine, such as red wine and aged cheese

@Mamabear12

Also, I just googled IIH and I wonder if that is what I have? I did have issues with my Blood pressure, which is now sorted with exercise and modifying my diet....although I am not 100% strict on my diet, now that my BP is within normal levels. I also started taking b12 which helped my BP and I did the 24 hour BP monitoring....

IIH is nothing to do with blood pressure, it is pressure in the brain that the patient doesn’t drain the csf off quick enough so it puts pressure on the brain and nerves causing headache and potential sight loss.

Thanks for clarifying.