[louise67]

hi everyone, hope you are all feeling welll today.
i am not diagnosed yet but waiting for a referal to a rheumatologist. i was wondering if anyone suffers with intense headaches, and if they have found anything that helps.
i have a constant dull ache, for weeks on end, and then about 3 or 4 times a day i get a very sharp intense pain behind my eye. it is always on the same side. it lasts for about 10 minutes and then fades to a dull ache again.
i have tried normal otc painkillers, migraleve, maxalt melt fro gp and dihydrocodiene, which i take regularly for pain anyway.
i am under the eye clinic and they thought it could be scleritis, but as it didnt respond to 40mg prednisalone he thinks it is more to do with my head than my eye.
i just am so desperate to get rid of this bad head, and wanted to know if anyone had any ideas or suggestions.
thanks xxxxx

 

[Katharine]

Hi Louise,

I think many of us have or have had trouble with intense haedaches of one kind or the other. I had constant migraine like headaches which went on for years (I wasn't diagnosed and therefore untreated) until they finally stopped with increased control of my disease activity. Prednisolone helped reduce them slightly but it was imuran that finally got rid of them. I was also on betablockers for a short period of time as at low doses they can help with migraines. I now no longer need the beta blockers and only get the odd headache - even in a recent month-long bad patch, the headaches and severe brain fog didn't come back (just the rest :lol.

The only thing I can say is to make sure you mention it to your rheumy and not let it go as it is literally a real pain to live with that every day and extremely debilitating.

Katharine

 

[ALWIN]

Hi Louise,

I had migraines from early teens. No treatment - tried many over the counter products.

Neurologist suggested half dose beta blocker after normal ct scan to rule out other potential causes due to varied other symptoms.

I have not looked back. I started the beta blockers months before my treatment for APS, SLE, etc. They worked for me. I take half a tablet daily and have had about 3 headaches in more than a year.

Before I had regular headaches (3-4 times a week, or lasting days on end) with migraine around monthly or so. The migraines made me confused, vomit and caused pins and needles with visual disturbances.

It has changed my life, quite frankly. I did not get proper relief until I was 43 years old - all those years suffering and the answer was out there all the time.

I hope you get something to help soon. Life without regular headaches is worth chasing. I did not know what i was missing.

Take good care and really, really good luck.

 

[Maia]

It sounds like it may be time to see a neurologist about those headaches. Even if you are diagnosed with lupus, the rheumy is likely to refer you there to treat the headaches if they have no easily identifiable cause and are not improved with ordinary measures taken for headache or lupus (if it's diagnosed).

I have a chronic daily headache that's been with me for almost 2 years now. It is better than it was a year ago, but it's still there. Prednisone did not really improve it for me, low dose aspirin doesn't help it either (if your lupus testing shows anticardiolipin antibodies or lupus anticoagulant this is a suggested treatment that can sometimes help headaches), the BP med made no difference, Midrin no difference, no pain med helps very much either. I'm not sure if finally getting back on Plaquenil is what brought about the slight improvement, I just wish it was GONE too!

 

[BigSis]

Hi Louise,
Unfortunately I'm with Maia on this one.
I have been thoroughly investigated but have found no direct cause for my daily headache other than the lupus.
Nothing has helped including steroids, aspirin, or trials off other meds or sorting out my poor sleeping.
I think now, that I'm just getting used to it though some days are worse than others. I won't give up reminding my rheumie that its still there however, and niether should you.
I wish you the best of luck..........let us know how you get on.


Alwin ......how does a beta blocker work for headache? Is it the vaso dilation?

 

[ALWIN]

Hi Bigsis

I have no idea how it works, but I assume it is as you say. My understanding is that in the simplest sense, beta blockers slow and strengthen the heart beat.

I suppose it could just be one of those quirky effects discovered by accident - almost a a side-effect. Some drugs are like that, aren't they?

I do have Hughes, so I assume that any vasodilator effect would be useful with sticky blood.

I do take aspirin, but started that WAY AFTER the Betablocker.

When i started on the aspirin and plaquenil I stopped the Nadolol for a while, hoping the other meds would have done the trick allowing me to get rid of at least one drug. The headaches came back, so I asked to go back on it.

I take 40mg Nadolol (Corgard) once a day. The smallest dose it 80mg, so I have to snap them in half, but they are scored, so it is easy.

It is used to PREVENT migraine, so they must be taken daily. It does slow the pulse, and there is a long list of potential side-effects, but the neurologist said he could almost guarantee that with this particular betablocker at this low dose i would be unlikely to suffer side-effects. I have not. I MIGHT have felt a bit more tired than usual for a few weeks after starting it, but i was quite tired then anyway, so it is hard to tell.

I suppose my pulse is a bit on the slow side, so when nurses take my pulse now they sometimes ask if i am very fit (it runs at about 55 beats per min when i am relaxed). It used to be about 65.

Hope that's useful.

 

[Sage Hen]

Louise,

I had daily intense, headaches. I also, had the ice-pic pains in my head. Felt as though, blood vessels were bursting.

I agree, that you need to see a Neurologist.

I was put on Cell-Cept, and finally, my headaches have abated.

Best Wishes,

Sandy

 

[louise67]

hi everyone, thanks for your replies. you are all very kind.

the headaches are still ongoing and i have suspected epilepsy so am undre a nerologist already. i have a appointment on 18th june to get the results of my eeg i had done 2 months ago.
i am also under the eye hospital for suspected uveitis. i have another appointment this friday.

i just cant stand the constant ache and then the regular stabbing pains. no one seems to have any answers and it is just dragging me down.

thanks again. i will let you know what happpens
take care all xx