Continuous Headache

[genorm]

Has anyone had, what seems like, a never-ending headache/migraine with their tinnitus? I am new to this condition, both started within a couple of days, 3 months ago. No painkillers seem to work on the headache. Has anyone any tips for me, please. Thank you.

[Maltija]

I find resting quietly helps, although my tinnitus is worse lying down, but it helps headaches.Have you checked your blood pressure?

[genorm in reply to Maltija]

Thank you for your reply.My headaches are also better for lying down and are worse during the day. My BP is reasonable.

[Happyrosie]

Hello genorm. The obvious things like making sure you drink plenty of fresh water - youve probably done.Have you approached a doctor about this? If you’re in the UK, your GP should be following the guidance given by the National Institute for Clinical Excellence.

There are several posts around this subject over the last few days so I’d suggest you read these and go from there.

[genorm in reply to Happyrosie]

Thank you for your reply.I can always do better with my hydration, for sure. I will read all I can here. I should go back to the GPs.

[a_jac]

Hi Genorm. I posted a similar comment just a few days ago. I am experiencing a very similar condition. My tinnitus came on around 2 years ago accompanied by regular migraines and a constant clamp-like feeling around my skull, the latter is literally 24/7, 365. I have had MRI’s etc but no explanation can be found. My T is in my left ear only and I have experienced partial hearing loss in the same ear; I’ve been prescribed a hearing aid so hoping this may help 🤞.

I’ve conducted wide research to try to nail down what could possibly be the route cause and recently I found information relating to Sternocleidomastoid pain. The symptoms are so similar to my own condition; specifically the ringing in ears and tightness around my scalp. I have started doing the gentle neck exercises recommended for this condition and although these have not resolved my T, I am slowly feeling an improvement in my clamp sensation.

I fully appreciate how you must be feeling and hope you find a way to manage your condition.

[OceanSun in reply to a_jac]

Hi a_jac,

What you've described here is eerily similar to parts of my own situation, which also started almost 2 years ago to the day. I have the clamp-like feeling around my head, which has been 24/7x365 since the beginning. I used to refer to it as a kind of uncomfortable pressure and painkillers have never touched it. It tends to be worse in the morning and with strenuous activity, which has been a difficult adjustment because I used to exercise a lot.

I also have the left-sided T 24/7 with slight hearing loss on the same side, together with a pulsatile tinnitus - a whooshing sound in rhythm with my heartbeat - which I can hear when bending over/straining/lying in certain positions. Have you noticed anything like this?

When this all kicked off it was accompanied by debilitating photophobia, hyperacusis and a more acute head pain, all of which still linger today but are thankfully less severe than they were for the first 18 months. MRI was normal so these symptoms led my first neurologist down the path of chronic migraine but none of the migraine treatments did anything for me. I stopped taking them due to the side effects and it seems the only thing that has helped with the latter symptoms is rest and the process of time.

The last consultant I spoke to was leaning towards a post-viral syndrome, possibly as a result of viral meningitis, but it's still unexplained and I've lost hope of ever getting an explanation to be honest. I will take a look into sternocleidomastoid pain though.

All the best,

Simon

[genorm in reply to a_jac]

Thank you for your reply. That is my sensation too, like a saucepan has been jammed down on my head. I will look into sternocleidomastoid pain also.

[Philip6]

I sometimes get an odd headache on the top of my head, like someone is pulling my hair. I once had that headache every day for a year. Just a few days ago I had a three day headache. With the year long headache 5 days of antibiotics seemed to sort it out. Otherwise, now I take naproxen for a few days and that seems to stop the headaches in time. But otherwise no pills help. Even naproxen doesn’t stop the pain until after several days.

[genorm in reply to Philip6]

Thank you for your reply. Headaches that don't respond to painkillers are a worry.

[Jh59]

Hi Genome,I had constant headaches for years. I found osteopaths that do cranial work has got rid on their constancy.

May be an option?

All the best,

John

[genorm in reply to Jh59]

Thank you for your reply. I used to see a very good osteopath for a dodgy sacro-iliac joint, so this could be a help with cranial massage. I'll contact her.

[rabbits65]

When paracetamols don’t work I find that Sudafed helps if I get that pain as I think it’s coming from the sinuses . . It’s difficult to cope with on top of tinnitus, I know .

[genorm in reply to rabbits65]

Thank you for your reply. I am going to try a different type of Sudafed, as sinus pressure is an issue with me too.

[rabbits65]

Inhaling steam over a basin is good too for clearing the passages . Put some Obas oil or something similar into the water and inhale , your head will feel lovely and clear

[genorm in reply to rabbits65]

Thanks again. I have just started doing this and the steam inhalation is helping a bit. I would say my sinuses feel pressure rather than congested. Just to get the headaches more into the background would be such a relief.

[Hidden]

I also used to suffer from frequent intense headaches. Gave up regular coffee and cola - decaf only. After the caffeine withdrawal period, I hardly get headaches at all anymore ....

[genorm in reply to Hidden]

Thanks for your reply. Due to GERD I've already quit caffeine and alcohol and for several years my migraines disappeared. My headaches do seem to be linked to the tinnitus onset. Thanks, anyway and glad yours have reduced.

[Poopp]

Yes new to this myself headache all the time and people don’t seem to understand that when they are really bad you can’t do anything properly just need to do what you think best . I am bit of nightmare when it’s really bad .a bear with a very sore head . Your not alone people on here very good at suggesting things to try.

[genorm in reply to Poopp]

Thanks for your reply. I always had headaches/migraines in the past, but my onset of tinnitus seems to have brought a different feel of pressure headache back. You are right about the helpful folk and good suggestions on this forum.

[bridgeit]

Hi Genorm,

it might be worth you taking a look at this website: csfleak.info/

CSF leak is one of the most misunderstood, misdiagnosed and missed conditions generally, leaving sufferers of this condition in a confused state with the wrong treatment and medication programme and living through symptom purgatory as a result.

CSF leak can start suddenly. It doesn't always present with a runny nose. A spinal fissure will leak without any nasal indication.

Leaks can be spontaneous or trauma-induced, perhaps through a neck whiplash injury, vigorous osteopathy or a blunt force such as a fall.

If symptoms are worse during the day and ease overnight while in bed, will not resolve with paracetamol, include light sensitivity and come with one-sided head noise, neck pain/stiffness then a CSF leak is worth considering.

Just to forewarn you: getting this condition diagnosed/ruled out is an uphill struggle. Most GPs have never seen it and don't understand it. Neurologists are unlikely to find it unless they know what they're looking for, they'll more likely than not resort to a diagnosis of migraine. The specialist needed for referral is a neurosurgeon, and a good one at that. The Association has info about who best to see. Diagnosis requires specialist tests to check cranial blood flow and pressure around the brain and spinal cord. These can be invasive and, to put it bluntly, scary.

The opposite is a condition call idiopathic intracranial hypertension, which is where there's too much pressure in the fluid around the brain and spinal cord, which brings its own raft of unpleasant symptoms. Check out this reference for more info: bing.com/search?q=idiopathi...

Again, it's a neurosurgeon who's needed for consultation and advice.

Just ideas for consideration.

Best of luck in finding out what's gone amiss!

[Poopp in reply to bridgeit]

Hi just read you reply to genorm . I have had blow to back and mayor head trauma to side of head fractures and stitches , six months plus still sore and have pressure head aches . Would you have this test done as last result to sort or would you have it done soon as if you still feel not right classed as serious tinnitus to . Hope you don’t mind me asking

[bridgeit in reply to Poopp]

I don't mind you asking in the least, but do bear in mind I'm not medically trained.

Based on my personal experience, if a CSF leak results from head trauma, there is likely to be evidence with nasal leakage. This is an oddly persistent drippy nose. Nasal CSF fluid is clear, cold, watery, salty to taste and not in the least 'slimy' as with mucus. Tasting the stuff is a disgusting exercise, but has to be done! Salty/metallic taste is a big giveaway; it's unmistakeable.The nose drips positionally, i.e. when leaning forward from a standing position or exerting strain. Sometimes, a pillow might be inexplicably wet in the morning as well.

Symptoms of cranial/spinal leaks generally ease overnight while laying horizontal, then increase dramatically throughout the day after standing. Exercising becomes difficult if not impossible because symptoms go off the scale. There are other symptoms aside from headache/sense of head pressure. The link to the CSF Leak Association goes into considerable detail.

A spinal dural fissure is an awkward condition to diagnose and locate.

If you think either could apply to you, I suggest you ask to be referred back to the neurosurgeon who dealt with your head trauma and fully discuss this issue with them. A neurosurgeon is the best person with whom to consider the possibilities and either reassure or investigate CSF containment and pressures. With a cranial leak nasal discharge, the standard test is to have the fluid from the nose collected in a sample bottle and tested at hospital. The test is called a Beta-2 transferrin test. It's easy, painless and non-invasive.

In my experience, a specialist is unlikely to arrange for any seriously invasive diagnostics until they've found some clues to indicate that a CSF leak or abnormally high CSF pressure might be present, but that doesn't mean the possibility is not worth asking about. I am of the view that CSF flow anomalies are overlooked far too often and need much greater awareness on the part of patients with peculiar, persistent symptoms as well as medics.

The only way to ensure that you're not affected by a trauma-induced CSF flow issue is to ask a neurosurgeon to rule it out. If they say a CSF flow anomaly doesn't apply to you, they should explain why not. Also, bear in mind that CSF flow anomalies can be spontaneous; they do not always result from injury, and injury includes surgery.

My attitude these days is that when something adversely affects my body, I want to be kept fully informed by specialists. I think thorough explanation is everyone's entitlement, if they wish to know. If in doubt, never be afraid to ask twice!

[Poopp in reply to bridgeit]

Thank you will get right on it .

[genorm in reply to bridgeit]

Thank you for your reply. The links made really interesting reading. For sure, several of the symptoms do seem to fit with my current situation. I will have to press my case. (btw I haven't had my ENT consultation yet due to the pandemic.) Again, very helpful bridgeit.

[iraymond]

Hi Genorm, I too seem to have a constant headache, but it is very mild. I think it is motion sickness, I've had it in the past but since I have had T I seem to have it all time, especially when moving about. I have an ENT appointment soon and I really want to find out whether there is an inner ear inbalance. I have constant pressure/blockage sensation in my ears as well. Good luck

[genorm in reply to iraymond]

Thanks for your reply. That sounds very much like my symptoms too. I'm sure my T , headache and pressure feeling are linked. Good luck with your ENT appointment. Disappointingly mine isn't likely to be anytime soon.