Severe head pain

[Tollie]

I was wondering if anyone have severe headaches or overall pain in their head. The pain I have in my head sometimes is so much more than just calling it a headache. My scleroderma have my face so pull tight that my ears are sore just from laying on my pillow. But these headaches are so severe and I noticed when I was washing my hair I could feel lumps on my scalp or as my cousin said after she felt my scalp she said it’s like trenches like what a ground mole leave. I understand what she is saying but I have them on my scalp and it wasn’t like that before and I seem to have more now than when I first noticed them. I know this disease doesn’t really allow you to have emotions like if I cry I have severe pain in my left eye and it seems like it attacks my body I feel awful and can barely do anything and it’s also like that if I get to excited the only difference is my eye doesn’t hurt as bad. I try to stay calm control my emotions as best that I can. But I am more concerned about what’s going on with my head.

[hunkyd0ry]

I don't have the headaches, but two things to consider maybe...

1. Did you have those headaches for a long time? Did you see a doctor about them (preferably your SSc specialist as they will take your condition into account)? Could it be migraine?

2. The only time I experienced headaches in combination with my SSc was during my Iloprost infusions... therefore the question if it could have anything to do with any meds you are taking? Did you start on something new which might coincide with the time the headaches started?

Hope you will find an answer soon and get rid of those aches. And definitely have those lumps checked out too!

Good luck! x

[Tollie in reply to hunkyd0ry]

Thank you for your response I am not on any new medication I am a bit more concerned if no one else have these headaches and attacks. I told my rheumatologist about the headaches but I think when I go back next month I am going to let him feel what I am talking about he really listens I had a lot of scans and tests but I am not sure if they was looking at my scalp. I thought about migraines but it seems worse than that maybe it is but it is worse because of my condition. I don’t take much medicine because I can’t have any medicine for inflammation because with my stomach it can cause internal bleeding. And also they have to be careful because I have only one kidney functioning. I take oxycodone 10mg he said I can take three a day but I mostly take one after I eat breakfast. And at night I take amitriptyline 25 mg it’s for the pain in my stomach my gallbladder isn’t working but about 16% it may not be working at all now other than that is just take nexium, carafate, clarinex,singular and cymbalta.

But again thanks I will make sure I ask my rheumatologist and go from there.

[Littleleni in reply to Tollie]

I get head pain and scalp

And neck too. But it’s like spasms. Everything gets hard and then hurts.

[Tollie in reply to Littleleni]

Do you get these pains often or every once in awhile. What does your doctor say about the pain and why it’s so severe. I sometimes think that I won’t make it through the night when my head hurts so bad but I lay there and thank God for everything he has brought me through each day is a blessing.

[Littleleni in reply to Tollie]

It’s spasms and tightness causing the pain maybe my neck fusion makes it worse. The pain can get excruciating. I use hot showers, Epsom salt bath, magnesium, cbd/ thc oil I make ( helps a lot) and Valium to

Relax the nervous system when nothing else helps. Pain killers don’t.

[Tollie in reply to Littleleni]

I haven’t thought about that thank you I will try it shower or soak I hope it helps me. It’s very painful but yes my medicine doesn’t see to help at all. It hurt really bad to even lay on my pillow. This sickness have so many different aches and pains. I am sorry you have these headaches as well I hope that they are not frequent my heart goes out to your and I thank you again for the suggestions.

[makingwater]

Yes have had severe headache burst out crying in hairdressers. As it was so severe. Read apostle online about facial exercises. To stretch face and head muscle's. Really works. Doesn't stop it. Muscles in face and head just tightening. But exercisestill help with pain. Hope this helps.

[Tollie in reply to makingwater]

Thank you I will look that up I had one of those headaches the other night trying not to cry but the pain is so severe I am willing to try whatever may help. I feel sorry for anyone who have these headaches it feels like it could be severe head trauma. Thanks again my heart goes out to you I will keep you in my prayers.