Yes of course, letting you doctor know everything is the key to pain management dealing with Lupus. Sorry that you are having this situation , hope that the do go away soon…Beverly L.
you are so right poobie! I've never even heard of these medications until all you gave me your feedback which I greatly needed and appreciate it! I go on Thursday & I'm definitely bringing it up, their so painful! Nothing triggers them (except if I'm in the sun) I just wake up & BOOM! Its full on pain for the rest of my day!
poobie said:
Your best bet is to see a doctor that specialises in headaches There are many drugs that are more effective and no won't interact with your medications. Elavil, taken at night to prevent side effects, works for many people I take Verapamil, a calcium channel blocker, to prevent Other drugs to prevent can be topamax, and inderal and there are a slew of meds to abort a headache when it starts. Why continue with HAs when they can be eliminated or at least controlled?? Good luck!
Wow Tina! 32 years?? Your a trooper!! I've never heard of anti-inflamatories until right now. I'm going back on Thursday to give the doctor a piece of my mind! Thank you so much for your words & encouragement!
Yes! I get these! I have had migraines for 32 years! They are usually on one side or the other of my head. They throb like crazy. I am sensitive to light and sound and get nauseated and vomit sometimes. They are awful! I take Relpax for my migraines and sometimes hydrocodone if my jaw joint is the culprit ( I have severe TMJ and have had one joint totally replaced by metal).
Then there is what I call my Lupus migraine. This is all the above PLUS my entire brain feels like it is on fire! It is soooo miserable and almost indescribable! The worst part about these is not much helps. I have to go to the ER and get IV Toridol (it's anti-inflamatory) and steroids and Benadryl. It's the only thing that helps! They tried migraine meds, IV Morphine, and other major pain meds NONE of them worked! It's because it's inflammation of the brain or lining of it! It is very hard to treat.
You will definitely have to talk to your rheumy and neurologist about it! They are really tricky so you need to see a specialist who knows about headaches. You need to double check that your doctors are knowledgeable and specialize in headaches.
I hope you get some relief soon! -Tina
Wow, thank you so much Lost Lupie! Sometimes the pain is so bad I can't even describe it to my mom, I just start to look like death and shrivel up into a ball! I definitely don't feel alone anymore!
I hope you can find a good neurologist that can help you! I am discovering it takes a team of doctors and making them work together to get the treatment you need. I had a huge break thru a couple weeks ago that has changed my life off our lupus web site! I don't even remember who posted it. But it was a website to get more educational information about cns, pns, and ans and through it I stumbled onto a clinic that is treating the damage done to my pns from my lupus to help me walk better again! It is giving me my life back! So hang in there. There is hope! You just gotta find the right combination of everything that works for you. And the awesome fellow lupies on this website offer a wealth of knowledge, support and big shoulders for venting and crying and hugs to share when you have break throughs and joyous moments! One baby step at a time! It's gonna be okay. Your'e not alone. There are other people here going thru the same things u r and we get it and were here for u!
Hi, we are all here for the same reasons!! Support, Comfort, to Vent, or to find out Information about this Lupus stuff. And there are others that are friends, a family member that is concerned about the Lupus person who they Love. But all the same we are Never Alone dealing with whatever part you are while, "Living with Lupus!!!..Beverly L.
I never knew their was all these medications for headaches! I thought it was just NSAIDS & over the counter pills! My mom is afraid all the Ibuprofen is going to eat up my kidneys causing me more pain than I'm already in. Seriously Thursday cannot come fast enough so I can address all of my concerns with my rheumatologist! I don't want to become immune to Motrin and be stuck with nothing to take! Thanks Sherry!!
SherryK said:
I had horrible headaches for a long time and some of them were the really bad Like ones that you describe. One of them landed me in the ER it was so bad. Well, that was how I was diagnosed with Antiphopolipid syndrome and TIA's. they Did put me on a headache preventative (topamax) which has helped plus aspirin plus plaquenil. I only have 2-3 headaches a month now. Please go get checked out. And go see a neurologist, he's the one that treats my headaches!
As others have said I think you should see a neurologist. I have headaches like you describe and I had an MRI and they found ischemia caused by vasculitis on my brain. My rheumy and neuro are treating this with prednisone.
maxalt is wonderful and if im not mistaken you can get it where it dissolves in our mouth, quick relief, cool washcloth over eyes, dark room, no sunlight, lay still, i have had these for over 20 years i have learned how to get on top of them b4 they get on top of me, you have to learn to control it , what triggers it, and never leave home without it.
auntpearl said:
When I was first diagnosed I think I lived in the dark for about six months with terrible, terrible migraines. Please mention this to your doctor. There were many different meds out at that time but one came out finally that really agreed with my system and worked too! It is called MAXALT and if I feel a migraine coming on I just put it under my tongue and fall asleep and the world looks a little brighter. I sure hope you get rid of those awful things very soon.
Take care,
I used to get bad headaches all the time, sometimes lasting 2-3 days each. My doctor put me on Topimax and it helped tremendously in preventing them. I still get an occasional headache now but nothing like before. I've had several incidents recently however similar to ones you described wonderfulworld. Only these were in the top of my head and I thought my brains were going to come out in a big explosion. Soooo painful! I've only had a few of them so far usually with sex and hope to never have any more! Those were as bad as having a baby pain wise.
Looks like all the headaches you guys are describing are all in the back of your head. I deal with headaches EVERY day, for the last month or so, usually from just a few minutes after waking :( They go across my brow bone and across the front of my head. Very similar to a sinus infection but I have no signs of sinuses or allergies acting up - no runny nose, sneezing,coughing, nothing. I am starting to wonder now if it is just Lupus, and not allergy or sinus related at all. That area is tender to the touch and sometimes I feel like just putting my head down and sleeping. I am a very strong willed person with four kids and I own a local store in town where I deal with people all day so it takes a LOT to get me down but these headaches have almost gotten me to this point. What do you ladies think - Lupus or just the average headache?
Doesn't sound like the average headache if you are having them so frequently. You could be having swelling in the sinuses and not have mucus involvement. I've had those kind of headaches a lot in my life. It also could be from how you sleep if it's causing pressure on the nerves in your neck can also cause headaches. Hard to say without maybe CT scans done to rule out other possibilities.
Good luck with it!
Karen
Littlehootmama said:
Looks like all the headaches you guys are describing are all in the back of your head. I deal with headaches EVERY day, for the last month or so, usually from just a few minutes after waking :( They go across my brow bone and across the front of my head. Very similar to a sinus infection but I have no signs of sinuses or allergies acting up - no runny nose, sneezing,coughing, nothing. I am starting to wonder now if it is just Lupus, and not allergy or sinus related at all. That area is tender to the touch and sometimes I feel like just putting my head down and sleeping. I am a very strong willed person with four kids and I own a local store in town where I deal with people all day so it takes a LOT to get me down but these headaches have almost gotten me to this point. What do you ladies think - Lupus or just the average headache?
Littlehootmama
You are describing my headaches..... I woke up with one this morning. I slept really terrible last night, worrying about my daughter : ( I use a saline nasal spray, and it helps me. I have just to accept that this is part of lupus.
Littlehootmama said:
Looks like all the headaches you guys are describing are all in the back of your head. I deal with headaches EVERY day, for the last month or so, usually from just a few minutes after waking :( They go across my brow bone and across the front of my head. Very similar to a sinus infection but I have no signs of sinuses or allergies acting up - no runny nose, sneezing,coughing, nothing. I am starting to wonder now if it is just Lupus, and not allergy or sinus related at all. That area is tender to the touch and sometimes I feel like just putting my head down and sleeping. I am a very strong willed person with four kids and I own a local store in town where I deal with people all day so it takes a LOT to get me down but these headaches have almost gotten me to this point. What do you ladies think - Lupus or just the average headache?
YES!! It was before I was diagnosed but it was the reason I started searching for answers. I had one week of vacation time and I wanted to really do a lot with my kids. So every day I went to the park, lake or pool. Well when it was time to return to work, I had a couple bad rashes and the most horrible headache ever. I could not walk or balance at all. The headache felt like I had something in my head eating my brain. I have had three children, and when I tell you the pain from the headache was like no other pain please believe me. I went to the emergency room and nothing they gave me for pain helped to even ease it ( They gave me heavy duty pain medication!). I stayed in a dark room for 5 days and than went to a neurologist. They did a brain scan (MRI) etc.. they thought I may have had MS but my scans came back good. This is when they started me on the long road to a lupus diagnosis. I still get migraines but nothing that felt like that one flair. Im so sorry that you are experiencing this.
I had the absolute worse pain beginning at the back base of my skull and it would hook around to my eye. It was a combination of throbbing, burning, and piercing pain! Sometimes my eyeball felt as though someone was pushing it out of my head! This went on for months. First had little relief from over the counter med, then tried fioricet and loritab. Nothing seemd to eliminate the pain only slightly numb it so I could go to work. Finally, I would literallybe overdosing on pain killers but still had no relief! Doctor was going to admit me into hospital. But strangely enough, prednisone stopped my pain. When I got to my rheumy she gave me a shot and a month long taper. The pressure slowly began to recede and I began taking topamax as a daily preventative. I am now off topamax due to side effects and praying the super migraine does not come back.
Also the neurologist said that there is a such thing as rebound headaches from taking too much or different kinds of pain killers. Which is an evil catch 22 because you take the meds to stop the pain then they turn around and cause more pain???!!!
Good luck...and if you have not been on pred for awhile you may benefit from a round to reduce inflammation.
Hi, yes those headaches can make someone very crazy . And seem like they always take away the time that you really want to do things with the family. Try cutting back on the salt when you cook your meals. As soon as possible make a appointment with the doctor, and hopefully he/she will give you something to help-smile....Beverly L. JAZZYDIAMOND7 said:
YES!! It was before I was diagnosed but it was the reason I started searching for answers. I had one week of vacation time and I wanted to really do a lot with my kids. So every day I went to the park, lake or pool. Well when it was time to return to work, I had a couple bad rashes and the most horrible headache ever. I could not walk or balance at all. The headache felt like I had something in my head eating my brain. I have had three children, and when I tell you the pain from the headache was like no other pain please believe me. I went to the emergency room and nothing they gave me for pain helped to even ease it ( They gave me heavy duty pain medication!). I stayed in a dark room for 5 days and than went to a neurologist. They did a brain scan (MRI) etc.. they thought I may have had MS but my scans came back good. This is when they started me on the long road to a lupus diagnosis. I still get migraines but nothing that felt like that one flair. Im so sorry that you are experiencing this.
Hi, oh boy tell me about it, when start like that I normally go to bed and turn off all the lights for about 2-3 hours. It is very hard to function when those headaches come, it’s like nothing works and sometimes the meds. don’t do nothing either. But get as much rest as possible, and take care …Beverly L.
kris said:
I had the absolute worse pain beginning at the back base of my skull and it would hook around to my eye. It was a combination of throbbing, burning, and piercing pain! Sometimes my eyeball felt as though someone was pushing it out of my head! This went on for months. First had little relief from over the counter med, then tried fioricet and loritab. Nothing seemd to eliminate the pain only slightly numb it so I could go to work. Finally, I would literallybe overdosing on pain killers but still had no relief! Doctor was going to admit me into hospital. But strangely enough, prednisone stopped my pain. When I got to my rheumy she gave me a shot and a month long taper. The pressure slowly began to recede and I began taking topamax as a daily preventative. I am now off topamax due to side effects and praying the super migraine does not come back.
Also the neurologist said that there is a such thing as rebound headaches from taking too much or different kinds of pain killers. Which is an evil catch 22 because you take the meds to stop the pain then they turn around and cause more pain???!!!
Good luck…and if you have not been on pred for awhile you may benefit from a round to reduce inflammation.
As I was reading your posts, it occurred to me that most of you are young - still having periods. Could the hormone fluctuations have anything to do with these headaches?
Please make appt and get those seen about. The pain causes your Bp to rise and that’s not good. I’ve seen a meurologist for 15yrs due to my inter cranial hypertension. Means too much fluid on brain causes HORRIBLE headaches which I get spinal taps to relieve the pressure. Good luck!
I finally saw my doctor today! I had to wait an hour and some change to finally see him and when I did I wanted to cry! He answered all of my questions! Since I took myself off prednisone last week , he came up with another solution! Injections x3weeks! These hurt like no other but he said by Monday (today is Thursday) I should wake up feeling 50-60% instead of 15% like I always do! I start Plaquenil 200MG on Sunday! He says these injections should help me feel better from the headaches and to lay off the Motrin and stick to Aleeve! I want to thank everyone for alllll their wonderful support!! <33
You are more than welcome!!!-smile , that is why we are here for the support and understanding that other can’t and don’t relate to because they really don’t know what we face daily, moment to moment, "Living with Lupus " they really don’t know…Beverly L.