Could my Chronic migraines be idiopat... - National Migraine...

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Could my Chronic migraines be idiopathic intracranial hypertension?


Hello everyone.. I suffer from chronic migraines I have just had a 2 week migraine but still sore now and experiencing symptoms.. I am seeing a consultant for my migraines soon as I am having some odd symptoms which arnt usual for my migraines? I have a lot of pressure in my head and more so when lying down the pressure and pain goes 10x worse.. even now nearly 3 weeks from when the migraine started am still sleeping with 5 pillows so am sleepin sitting up and also keep getting a weird noise in my ear, and my side vision keeps going grey and eyesight will go blurry and am very dizzy and off balance.. I know that IIH (too much CSF fluid) can cause these symptoms too so going to ask if my consultant will consider doing a lumbar puncture to rule it out? No pain medication is working at and I’ve been careful not to go over the recommended days as to get a rebound headache so am just having some dissolvable paracetamol as and when I need it.

9 Replies

I am having very similar situation, but I need to lay flat to get any relief. I am worried about CSF leak. Where as yours does sound like symptoms of IIH Increased ICP. I have insane head pressure 24/7 and lots of neuro symptoms. MRI and MRA normal, but these things sometimes doesn’t show up. But he feels a LP will only make my head worse and feels it isn’t a CSF. I can barely function with all the symptoms I am experiencing, I have to lay down a lot throughout the day. Faintess dizziness weird visual disturbances and ear issues. Face nose back of head pressure sometimes the top, zaps through head and lots of stuff. He tries to say it’s severe neurological disorder and get my stress down. I have never had issues prior to this and now been dealing with this for three years almost and it’s the scariest thing ever. I hope you get answers.

I had an CT scan a while back was fine too but they don’t show the CSF levels, and have weird face noises too.. Aww am so sorry your suffering as well... Yes yours sounds like the opposite too mine a leak in the CSF fluid, really insist and push for the lumbar puncture as you need to know and yes it could make the headache worse but they can solve that with a blood patch to stop the leak.. Am goin to inisist to the consultant that I want a Lumbar puncture doing and I will even pay for it myself.. Had a horrible night once again with the pressure, pain and ringing in ears.

Have you tried going to an optician? If they can see your sight is being effected by increased pressure that would add to the argument you might have IIH. Plus your sight could be permanently effected by such a condition so it's probably quite important that you go?

rhea_smith1991 in reply to Cat00

Yes I have an appointment at my opticians Wednesday 5th August.. Then I have an appointment with the neurologist a week after that.. I’ve had a terrible night again with the pain, pressure and ringing in my ears.. If it gets worse think I will go along to a and e as don’t want to risk damaging my eyesight.

Cat00 in reply to rhea_smith1991

Yes I'm not surprised you feel that way, 5th of August is a long way away when you're in so much pain and the added stress of wondering why makes it impossible to comes to terms with it in the short term at least. If you have no history of migraine or it doesn't run in your family you should get more help too as the cause would be more of a mystery.

I have heard of people developing similar complications with having the lumber puncture itself and CFS leaks so I can see why they might be reluctant to give you one. Hopefully they can do less invasive investigations, certainly eye pressure is good place to start. A & E is horrible but if that's what you need to do to be taken seriously then go for it.

rhea_smith1991 in reply to Cat00

Yes when your in pain every day a week is a long time.. I know Lumbar punctures arnt nice but I would be willing to risk the risk of getting a headache as I’ve got a severe one anyways 😩 and they can do a blood patch if needed.. I would just like to know 100% that’s it’s not IIH and if it is really bad daily migraines then to start me on a treatment for that.. as nothing am taken or have taken is the past has worked.. I really don’t want to go to a and e I’ve holded out this long but I can’t take much more of it so just going to see how I go.. Hope your well.

How is your neck - any problems with your neck and/or your shoulders?

I ask because I have had similar symptoms periodically - when my neck is playing up, and I may not even be aware that my neck has become stiff and uncomfortable. I got up this morning with a feeling of pressure on the left side of my head, with a sound like a hairdryer blowing in the ear that side, a bit of numbness/tingling near my mouth on the same side - in the last hour, it's got worse and is becoming a headache (soluble co codomol fizzing in a cup now, to take shortly), but because I've had it loads of times before, I am also aware the sensation is in my shoulder, at the top where it joins the neck as well. Which means its to do with my neck...


I haven’t ever damaged my neck but it does get really stiff and can hurt too with the migraine.. Do you think it could be related to my neck? I’ve never thought there could be a connection too the two as I haven’t ever injured my neck.. Hope your ok.

Oh, my pain will pass - I'm quite old and I've seen the scans of my neck, not surprised it gives me trouble!

However, when I was much, much younger, I ended up in hospital with a headache so severe they were worried about a bleed on the brain. I had a lumbar puncture and various scans and they showed nothing at all, so I was told I had 'menopausal migraine' and was given an appointment for the migraine clinic. Given I was only 34 at the time, I was not happy with that diagnosis and went to see a cranial osteopath - turned out I had a small bone out of place in my neck, which he corrected, and I was fine for ages. I did go for the migraine clinic appointment, but when I told them I'd seen an osteopath and what he had said, they sent me home, saying it was highly possible my neck had indeed caused the problem. But I had damaged my neck when I was young I think, and often had a stiff neck/headache and so on, so then I just used to go the osteopath about every 9 months to get my neck treated and I was fine, right up until my bones got thin, which rules out osteopathy.

I do have migraine - aura migraine was my bugbear, but I resolved that by cutting out dairy, especially cheese, so I don't have that any more, unless I give in and eat cheese... But I still get headaches, occcipital neuralgia and lots of weird symptoms in my face, neck, ear, head, usually on the left - I once had what was probably a hemiplegic attack of migraine, after stroke was excluded, though the jury's still out on whether it was my neck that caused it (I have slipped discs all the way down with a compression at C5/C6) rather than it being migraine. All these sorts of symptoms used to be a signal to go the osteopath... so I just wonder if your symptoms are due to neck problems.

One thing with a lumbar puncture; you will need to lay down flat as often as possible after you have one for the first 4-6 weeks, until the spinal fluid has replenished itself, or you will have a permanent, ongoing headache for weeks and weeks. The hospital that did the puncture never told me that, so when I went to the osteopath for the first time 4 weeks later with a permanent, dull headache, he was shocked I had not been told about the need to lay down.... So I did, after that, lay down as often as possible and it passed within a week or two.

As you've had scans of your brain ruling out serious causes (I imagine they did not do your neck as well, which is a shame) I think maybe you should try to find a good cranial osteopath, stump up the money and see if it helps... I'll just add that my son has headaches and has a bad neck, and he's never had any obvious injury to his neck - the last osteopath he saw told him he had the neck of a 70 year old at the age of 36! Necks get a lot of wear and tear, especially now we all use computers and other devices a lot of the time...

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