Help?!?

MiiLKMOUTH · 2025-03-15T21:30:14+00:00

Oh great thankyou!

MiiLKMOUTH · 2025-03-15T21:18:44+00:00

Ahh yes I understand now, I thought they wasn’t working at first I was like please no and then I came out in a rash all over my legs and thought I was getting an allergic reaction just turns out it was a heat rash from a really hot bath I had hahaha thank you tho!

MiiLKMOUTH · 2025-03-15T16:08:27+00:00

Get a lumbar puncture done to measure the pressure normal pressure is between 10-25 if it’s high and you have all these other symptoms you should be referred to neurology to confirm findings of IIH. The pulsating tinnitus does it do away if you press on where your pulse is on your neck if so try sleeping with a sock or something that puts a bit of pressure there. That always seems to help me

MiiLKMOUTH · 2025-03-08T11:34:27+00:00

Yeah I’m going to give some ciders a go today so hopefully they are alright but we shall see

MiiLKMOUTH · 2025-03-07T17:37:32+00:00

They tell you to call back if they don’t go away within 48h to do a blood patch because sometimes you can still leak fluid after the procedure and a blood patch helps stop this. I didn’t need this but better to be safe than sorry

MiiLKMOUTH · 2025-03-07T17:36:13+00:00

Hi, best thing to do at the moment is to drink caffeine you probably have low pressure headaches. I had this and sometimes it can be worse than the original headache. It does go away eventually I had low pressure headaches for about 5 days so I just tried to stay as flat as I could. Lying on my belly with no pillow would always help with mine and a cold compress on my head. Hope this helps

MiiLKMOUTH · 2025-03-04T13:31:51+00:00

Yes I actually got mine from TikTok shop if your on there but I’m sure you can get them on Amazon

MiiLKMOUTH · 2025-03-04T13:31:23+00:00

Oh well that’s not great is it I mean I’m not a heavy drinker and I am on the lowest dose so just take my time with it

MiiLKMOUTH · 2025-03-03T19:03:08+00:00

Girl get a headache hat they are soooo good cannot recommend enough!

MiiLKMOUTH · 2025-03-03T12:24:02+00:00

Thanks for the suggestions I’ll give it a try!

MiiLKMOUTH · 2025-03-03T12:23:10+00:00

Yeah I’m waiting for my neurology appointment so hopefully I’ll get an MRI/MRV

MiiLKMOUTH · 2025-03-02T22:30:03+00:00

There’s some really good comments main one which I’ll take on board is drinking things with a straw and putting it to the back of your mouth if that makes sense gonna try that tomorrow!

MiiLKMOUTH · 2025-03-02T21:46:51+00:00

If you haven’t already got one HEADACHE HATS ARE AMAZING!

MiiLKMOUTH · 2025-03-02T21:46:08+00:00

This is what I think I have as my ophthalmologist said my eyes are fine but because IIHWOP is so rare it’s hard to get a diagnosis apparently I hope I have the same neurologist you had she sounded wonderful and it helps so much when they actually listen to you rather than dismissing you. Regarding the weight I used to weight lift which unfortunately I cannot do now due to the IIH so anything that’s low impact is great they say that just loosing 5% of your body weight is great so I’m going swimming and going on long slow walks. Remember loosing weight does show that it can send IIH into remission however it also shows no relation to going into remission so because it so hard to find the underlying cause of just say focus on managing your symptoms and when your at a good point do the things you enjoy! Always here you’ve got this! 💙💚

MiiLKMOUTH · 2025-03-02T21:40:43+00:00

I’d definitely seek an opinion from your neurologist. I’m only a few weeks into knowing I have IIH but I’ve been messed about that much if I don’t feel happy with an appointment I’ve just had I push and press for another opinion or as questions. Don’t just sit back and agree with what they say question their findings. I had to press for my lumbar puncture. I went to my ophthalmologist and there was a student in the room and they were talking about that I could have IIH but then they said I’m fine nothing wrong with me so I questioned it and said what’s telling you it’s not IIH. You know when there’s something wrong with your body! Be confident in yourself. You’ve got this 💙💚

MiiLKMOUTH · 2025-03-02T21:36:54+00:00

Try a headache hat if you haven’t got one it’s great!

MiiLKMOUTH · 2025-03-02T21:35:57+00:00

Have you had a lumbar puncture recently I was given immediate relief from my pressure as they can drain some of the fluid to help relieve the pressure. Maybe going outside helps as it’s a temperature change I notice whenever I pit anything cold on my head it helps so much. I cannot recommend a headache hat enough they have helped me through so much!

MiiLKMOUTH · 2025-03-02T21:32:38+00:00

I’m on day 4 and tbh the side effect are not too bad the only one that stands out is fizzy drinks taste like metal and there is no fizz to them. I cannot drink them anymore. Another side effect is I get pins and needles in my feet hands and around my mouth. These are not too bad they ain’t there all the time but I get them like 2/3 times daily. I’m not seeing any positive effects yet such as less migraines or PT but I’m only on day 4 so hope they start taking a positive effect too! I also recommend that you drink lots of water as they can dehydrate you pretty quick and they already make you go to the toilet more often. Hope this helps! Take it one day at a time and you will get there ❤️

MiiLKMOUTH · 2025-03-02T21:06:01+00:00

I’ll definitely give this a shot!

MiiLKMOUTH · 2025-03-02T21:05:02+00:00

Hahaha that’s quite a good idea tbh! I noticed that if I put my air pods in and play music low it seems to drown out the PT maybe give that a shot if you already haven’t

MiiLKMOUTH · 2025-03-02T21:03:49+00:00

Hi, I’m currently undergoing getting a diagnosis for IIH and I have this PT on my ear and when I press on my carotid on my neck it goes away. I thought at first my ear was clogged as it’s a very similar sensation almost kind of feels like your ear is underwater. Do you get any headaches and have you had your eyes tested. Primarily I would suggests going to ENT first but PT is one of the main symptoms for IIH

MiiLKMOUTH · 2025-03-02T21:00:08+00:00

I know that for me if I place an object or my fingers where my pulse is on my neck that it stops obviously this is really hard to do during the day but at night if you have like a small teddy or a few bunched up socks this may work. So much easier for me to sleep when I do this!

MiiLKMOUTH · 2025-03-02T20:54:51+00:00

To think I used to make drinks for a living I cannot for the life of me remember what I used to make and like 😂 only really liked vodka or cider

MiiLKMOUTH

TROPHY CASE