Headaches

[msBrightside]

Is it a common thing to have a headache for almost 2 weeks ? "/ I had put it down to severe migraines but it's not getting any better.

[MaryF]

One thing to look into is Hughes Syndrome/APS often missed. also Fibro not always but quite often turns out to be an untreated thyroid disorder. If you have Hughes Syndrome, the headaches go on and on and on, as do often various other even worse symptoms. It is common with Hughes Syndrome/APS to have Sjogrens Disease and a Thyroid problem, it is cheap for a GP to do the blood tests even if just to rule it out. If you have ever had unexplained seizures or strange symptoms it would be good to investigate it. MaryF

[msBrightside in reply to MaryF]

Oh it does sound similar too my symptoms. I have felt like I can't suggest my thoughts to the doctor hopefully I have been referred to my neurologist though I plan to tell her all my thoughts as I have known her since I was 14 I will be more comfortable.

[MaryF in reply to msBrightside]

Neurologists frequently dismiss or ignore Hughes Syndrome. but please push for the blood tests which are these: hughes-syndrome.org/about-h...

Often other family members past and present have other autoimmune diseases, but not always, including miscarriage. Here are the symptoms also. hughes-syndrome.org/about-h...

If you do have it, there is a list of specialists in the UK to be referred to, but please be aware it is possible in some cases to have this, but show a negative test result. Best of luck. MaryF

[msBrightside in reply to MaryF]

It could be possible because there is a history of miscarriage in my family.

I don't know yet if I have definitely been referred to a neurologist as I struggled with GPS that don't know me to get a referral. I don't understand why I wouldn't be though as I missed an appointment 2 years ago which I wasn't aware of.

[MaryF in reply to msBrightside]

Go and seen your GP and suggest that you think you may have APS/Hughes Syndrome, and you wish to rule it out, they could do the blood tests, but make sure you either do the tests above at the hospital, or if at the surgery they need to go off early to lab, so a morning appointment, as they are a bit sensitive and should not hang around long. This is the list of specialists. Also here is an article: hughes-syndrome.org/self-he...

telegraph.co.uk/health/4400...

Some people do self refer themselves to London Bridge if they can't get anywhere with their GP! However this does cost. If you feel nervous of GP take your most articulate professional friend or relative, it is your right to get some answers. MaryF

[Paulacg]

The other thing to be aware of is medication overuse headache. migrainetrust.org/medicatio...

[msBrightside in reply to Paulacg]

That could be possible because my friend had muscle pain and headaches all of a sudden prolonged and it turned out it was the strong pain killers he had been taking for a year or so.

[Gambit62]

Sorry to hear that it has been going on for so long. You really do need to go and see your GP if headache has been going on that long.

Another possibility may be B12 deficiency - this also runs in families and is associated with fertility problems.

Checklist of symptoms can be found here

pernicious-anaemia-society....

Unfortunately, unlike Hughes Syndrome there isn't a good test for it - and people can get back results for Serum B12 that say they are normal when they have strong clinical indicators ... and it gets ignored.

Symptoms are pretty varied from person to person though lot of GPs think it can only be B12 if you have anaemia - though people frequently present now with other problems first.

If the checklist rings bells then discuss with your GP - though expect them to be skeptical. If you manage get the test - ask for Folate, homocysteine and MMA as well - though they may not agree to homocysteine except as a follow up if they have enough nous to realise that the results they are looking at aren't 'conclusive' (not that they will be anyway unless you come out as really low :)). Ask for results when you get them back and post them on the PAS forum.

[msBrightside in reply to Gambit62]

I should really see my GP I saw him last week though and he said to leave it for 5 weeks until my next appointment. I think he has did all he can for me since he has got the medications right.

I could tick off more or less all of they symptoms though the celiac and B12 tests have been ok.

[Gambit62 in reply to msBrightside]

Suggest you ask your GP for copies of the results - and post on the PAS forum.

As said, there isn't a good test for B12 and there are so many cases of people showing strong clinical signs of B12 deficiency when their test results say 'normal' that current NICE and BCSH (Haematologists) guidelines are to treat on basis of symptoms rather than test results - though that is a change in the last year or so so a lot of GPs aren't aware.

In UK you have to have a level below 150 before it registers as low. In Japan people are treated at levels below 500.

It may not be B12D as symptoms have a huge overlap with other problems but given that you say you can tick off more or less all of the symptoms ...

[msBrightside in reply to Gambit62]

Yeah I'll need to find out what's going on they never tell me anything lol

[Starbys]

Hi msBrightside,

It's me again! Just saw ur post and thought I'd give u my insight!

'Headaches of a new pattern, type or severity' (compared to what had prior to ME) are one of the key symptoms of ME.

Some criteria for ME and for CFS describe the headaches as above and some also list a symptom as 'chronic daily headaches'.

Either way frequent bad headaches which are sometimes migrainous and sometimes not are a very common symptom of ME and of CFS.

In theory in order to diagnose 'ME/CFS' doctors are supposed to rule out all other possible conditions that could be causing the symptoms first, but in reality this doesn't happen.

They do the most basic small set of blood tests possible and then claim that they have ruled out all other causes but these blood tests only rule out a tiny handful of conditions. This is one of the many reasons why the NICE guideline is so inadequate and not fit for purpose, but unless and until it's reviewed and changed, this is what doctors will follow.

So on that basis it can be difficult to get doctors to do other tests.

So CFS is commonly misdiagnosed, or if a person does actually have CFS or ME, other coexistent conditions can be missed because of the stupidly minimal blood tests they do.

So I think that it's always a good idea to press for more tests especially in the early days as you've only recently been diagnosed and also because this is a new symptom for you so even if you do have ME or CFS as a cause of your other symptoms it can't be automatically assumed that the headaches are part of the ME or CFS without doing tests to rule out other causes first.

The GP is unlikely (although not impossible) to be persuaded to do more investigations as they've already given you the ME label which makes most doctors not want to do other tests cos of the rubbish NICE guidelines.

But it would be a good idea to discuss it with the neurologist as persistent headaches are one of the areas of speciality for all neurologists so they should know what tests to do to rule out (or discover and diagnose, as the case may or may not be) all other conditions properly (unlike the minimal blood tests NICE advise drs to do only, which rules out very little) that could be causing the headaches.

Make sure you tell the neuro all your symptoms inc the seizures etc in case there's a link between all the different symptoms that could point towards a condition, which sometimes happens with rarer conditions.

If once the neuro has done tests (such as brain MRI and other blood tests, maybe EEG - I know you've had some of these before but would still need repeating because you now have new symptoms) and they have found nothing else you are still getting the headaches at that stage, then you will know as well as you ever will that it is ME or CFS causing these headaches.

Sometimes headaches can come from taking paracetamol 4 times a day every day (medication overuse headache) but often that's not the cause and the reason people take the paracetamol in the first place is because they already have chronic headaches.

If you can manage it you could try cutting back the paracetamol a bit if ur taking a lot of it, test if it makes the headaches improve.

But don't be in too much pain by doing that, as that doesn't help either, if you need the paracetamol to keep on top of your pain then you may have to carry on taking it at least for now.

It may also be worth alternating ibuprofen (nurofen is a brand name) with paracetamol as sometimes as the ibuprofen is anti inflammatory it can help more with headaches depending on what sort of headache you have. If there was any med overuse headache from taking all paracetamol this might help.

BUT if ibuprofen helps you and you think that you will need to take it regularly for more than a few weeks you should discuss it with your GP as they will need to prescribe a drug to protect your stomach lining to take with it, as without that ibuprofen taken long term can cause stomach ulcers so you have to take the stomach protection tablet (eg omeprazole which u only have to take once a day) with the ibuprofen to prevent that.

Definitely ask your GP to check out other potential causes of the headaches - and also ask him/her if he/she thinks that any of the anomalies they've already found in your blood tests could be causing the headaches - but also chase up the neuro referral. That's really good you have a neuro who knows you who you find helpful - that's in your favour for sorting this out one way or another!

Hope you're having a lovely day today!!

Take care,

Starbys

[msBrightside in reply to Starbys]

Hello again! I think the Neuro would give me a better idea of what is going on.

I can't take ibuprofen as I'm on naproxen I was on omeprazole for months while they were trying to figure out my stomach pain even after being treated for helicabacter.

Hope you are having a lovely day too I had a great morning and Xmas eve but caught a bug from a family gathering the youngest of the family my 10 month old wee cousin ended up in hospital. Luckily she just got home after being taken in yesterday. It could be the paracetamol missing one dose usually affects me more or less straight away though.