Headaches and aps: Hi! Does anyone else... - Hughes Syndrome A...

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Headaches and aps

gemgemz profile image
14 Replies

Hi! Does anyone else get headaches that start in the day and get really bad at night and you feel sick too. I have started to get these and wondered if its an APS thing or just a stress thing and im over thinking it abit. I went to the gp and he has given me some anti inflammatory tabs ( I did not realise I could take these when taking warfrin) im going to give it a try and fingers crossed they help. Any advice would b very much appreciated

Thanks Gemma

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gemgemz profile image
gemgemz
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14 Replies
MaryF profile image
MaryFAdministrator

Hi, I think in the first place it is good that you visited the GP, and please can you contact your main consultant who manages your Hughes Syndrome/APS as if this is a new or worsening symptom you may need more help. MaryF

gemgemz profile image
gemgemz in reply to MaryF

Ok thank u mary for your advice :-)

panda60 profile image
panda60

Don" t forget to check your inr after a day or two as any nre medication can affect it. I get headaches sometimes when my neck stiffens up.

gemgemz profile image
gemgemz in reply to panda60

Thank u for your msg!

Debbweb01 profile image
Debbweb01

Yes you can get headaches with APS! Also migraines are common too! Fatigue and nausea! I wake up every morning with headache that sometimes turns into Migraines! Do you get Migraines? I wish u well!

KerryA profile image
KerryA

I find I get headaches more if my INR is below or at the lower end of my range of 3-4. Check where you are in your range when you get the headaches. if it's at the lower end, try to get a bit higher or check with your consultant if maybe your range needs to be raised a bit. Tension in the neck and shoulders can also give headaches and nausea - have a look at what you're doing, eg. on computer a lot, watching TV, what your posture is while you are doing things, are you changing your activities frequently or sitting for hours in front of a screen etc? There are of course many other things but try these for starters.

Hope you improve

gemgemz profile image
gemgemz in reply to KerryA

Thank u very much for your msg! I didn't know that about your neck. Thank u

Sal0712 profile image
Sal0712

Headaches are a big problem with APS, especially when your INR drops. This week my INR has dropped from 3 to 2.1. I have had a constant throbbing headache and feeling nauseous since Tuesday. My warfarin has been altered, and I am waiting to see an improvement. I am booked in for another INR check on Tuesday. My medical team are very good and keep a close eye on me. If my result is no better on Tuesday and I'm still getting headaches and nausea, my nurse will check in with the GP about what action to take. Although I feel anxious (due to previous blood clots and a bleed on the brain) I know my GP is on the ball.

The main thing to make sure you do, is to take on plenty of fluids as its so easy to get dehydrated. This can increase headaches making them worse. Hope the meds your doctor has prescribed give you some relief. Let us know how you get on xxx

gemgemz profile image
gemgemz in reply to Sal0712

Thank u so much for your help. I think I really need to keep a closer eye on my inr and see if it has an effect like you said. I self test and usually do it every other day but because it was 3.7 the morning before I felt the headache coming I didnt do it until I felt better2 days later....I think Iit may of fell as I didn't change my dose and the inr was the same 2 days later. Sorry im going on abit now! Its just so gd to hear from someone going through the same thing.

Thanks so much for your advice!!!!!!

Gemma

Lure2 profile image
Lure2 in reply to gemgemz

Good that you can selftest every other day!

Then you can follow your INR and know in good time if it will go up or down. I never change my tablets but change the amount of green vegetables.

I wonder if your INR at the vein at the hospital is the same as your fingertest with your machine?

If I have an INR of 3.7 on the machine the REAL value is around 2.8 and i must in that case have a Fragminshot as the INR is under an INR of 3.0.

We are all different (if we have APS) but all of us with a machine must do a doubletest for a rather long time with the vein-value via the Hospital lab.

Kerstin

Lesley61 profile image
Lesley61

I had lots of bad heads and they put my INR up to 3.5 cos I was on 2.4 to see if it helped it's as I still get them but not as bad now x

Lure2 profile image
Lure2 in reply to Lesley61

Have you got the name of the Doctor your are going to see on Dezember 16 now? Is he an APS-Specialist or is it the one who is going to do the operation?

What is your therapeutic level at present? If I am under an INR of 3.0 I have to take a Fragminsshot. You also?

Best wishes from Kerstin

Lesley61 profile image
Lesley61

Sorry not been on here for a bit cos off my operations all done now the doctor I am seeing not give me a name its in Manchester it's a lupus clinic I just going see wot happens this time but iv been tested for lupus and came back normal so will let you know when iv been so if it's been a good help or wages of time my INR not too bad it's 3.9 I go for my bloods doing on Monday xx

myarabella profile image
myarabella

Hi Gemma- I get severe migraines which often start in the middle of the night and present in the worst possible way first thing in the morning. I have had MRI's to no avail. Through trial and error I have found that ice is super helpful. Muscle relaxants, such as Soma, help especially if I take Advil and a muscle relaxant at the onset. Completely avoid caffeine. It makes my headaches significantly worse. Doctors have told me the headaches are menopause related. I don't think so. My Internist told me that I should try Botox injections in about 20 locations in my neck and skull. I haven't done this yet, but may consider it. Of all problems, migraines are my biggest issue. Please keep in touch with me should you find a good remedy. Good luck.

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