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View Full Version : Flares and head pain



abbasgirl
04-24-2009, 09:44 PM
I've been miserable for about a year now and I'm curious about flares. I don't know if this is a flare or I just haven't gotten the right treatment/s yet. If it is a flare, is it normal to be in one for so long? I'm taking Plaquenil, and was on some pretty decent pain meds but have moved up to Opana IR and ER both along with cymbalta for possible neuropathy. I still have days with pain that the opana cannot touch. I can cope with my joint pains because that comes and goes. But I get this head pain that is constantly a pain, either it's dull or at times it's so bad the Opana can't touch it. My primary is calling the bad ones migraines or it's possibly this disease causing it...and I have immitrex to take for those and I always end up having to take two or three advil with it to get it under control, or if I'm out of that because of my insurance company rules about how many I can have per month, I have to go to the ER for relief.

It seems like the more time has gone by, the really bad head pain days are happening more often. I've been noticing in my health journal that it is occurring more often. I've had an mri and cat scan done and nothing was found. What I get is...the dull pain seems to radiate from all my head joints (jaws and where the head and neck join). The nasty pain that I get will always start in my right eye, then it grows from there into all over head pain. I don't see any lights before them and I've only had the nausea/vomiting with them a few times. Migraines are something new I'm learning about and I just have the feeling it's not migraines. What do you all think?

I hate having to go to the ER for pain control. The last time I went there they put me in a area and forgot about me for two hours. They were apologetic but...ugh. The pain was so bad I was asking God to just let me die. I don't mean to sound like I'm tootin' my own horn, but I'm a pretty tough gal. This pain is agony! To me, it seems like it's major inflammation since the immitrex with advil helps.

sickofbeingsick
04-25-2009, 08:30 PM
I am sorry you are going through this. I too have headaches on an almost daily basis. Some are very painful, but tolerable. Others I must say are so excruciating that I call them suicide migraines. There isn't a single thing I have found that helps, except for a dark room, quiet, ice, and a lot of time. My dr is trying preventative medication. Neurontin and metoprolol, and the severity of them is getting more tolerable. I feel for you and hope you find relief soon.

KHoguetuc
04-26-2009, 12:11 AM
I understand. My doc gave me Soma, nortriptyline, and vicaden. I am on day 4 of a migraine type head ache. When I had a behavior issue with my 14 year old yesterday I flipped. She raised her voice and I just started crying and saying that I wanted to die. That was when it was at its worst. Now it is back to a mostly dull ache with a few shooting pains all day.

Not very helpful huh>?

sugarfoot52
04-26-2009, 01:47 PM
I also get horrible headaches, sometimes migraines. Even if they don't get excrutiating, they wear you down and make depression easier to fall into. I am not supposed to be taking any kind of aspirin or ibuprofene because I have over used them trying to help manage the discomfort of my joints when working, to the point of developing an ulcer. So when it gets to be over 2-3 days of the same headache I will break down and take an excedrin, if it still goes on another day, then I resort to imitrex. I have to watch it because none of my doctors seem to be as enlightened as this panel. Thats what I love about this sight, even when you can't get your doctors to believe you, there are so many good people here that keep you from feeling all alone.

abbasgirl
05-15-2009, 12:24 PM
I'm sorry I'm so late in replying. I've been pretty sick.

Sugarfoot...you are so right about this place. Thankfully we have somewhere to go where we're believed! I so appreciate you all! I used to take excedrin every day. I haven't had a headache in over a year that excedrin can help. Ugh. It's always something stronger. I had to take two immitrex this week on separate days and again...it's the closing of the day and I feel like I need to take another one. Oh my stomach is gonna love this, not. lol.

KHoguetuc, I'm so sorry you've been suffering like that. How are you?

sickofbeingsick, suicide migraines is the perfect way to describe some I've had too. I'm going to see a new pcp on Monday and I'm going to ask about the Neurontin and metoprolol. I am beyond tired of my head hurting. I wonder if nothing ever works if I can get some nerves frozen or something like that! That seems SO dangerous but I'm close to considering the extreme.

Thanks for the responses. It helps. KHoguetuc, please let me know how you are.

emilbear
05-15-2009, 03:13 PM
i get these kinds of migraines too (and i also have neuropathy). they've been frequent for a couple years now. one thing i found that does help is a nightguard for your teeth when sleeping. a lot of people clench or grind their jaws, especially when sleeping, and may not even know it. i've had the mouthguard for about 9 months now and it has helped to cut back the headaches a lot. i often find that my migraines coincide with my jaw being very tight and sore and so are my neck and the bottom part of my head. i also notice that the migraines get worse as my stress level gets worse. but you all are right, sometimes the headaches are so bad i just curl up in a ball and cry :hissyfit:

i hope your headaches improve! my primary care doc has suggested trying acupuncture but i haven't tried that yet. but it could help!

abbasgirl
05-20-2009, 11:05 PM
emilbear, when you try the acupuncture, could you tell me how that goes? I'm curious about that.

They thought I had TMJ once and designed a guard for me to wear at night. It made my pain worse. And then they said, okay, maybe it's not TMJ.

This has been a lonnnnng road. I have yet to see a neuro and am hoping that's going to help. I've had a shot of decadron...that was on Monday. It started helping the day after and so far the relief has lasted for two days. If it doesn't come back I'm guessing that's very telling. Maybe. :wacko: Who knows?!

I'm just thankful for the break. I woke up today with NO pain in the head or eye. When I laughed at anything today, yawned, talked a bit too much, my head felt achy but went away after I rested for a bit.

This is just so weird.

froggal
05-21-2009, 12:47 AM
I hope that you can find some answers. I have said this numerous times, but I firmly believe that waiting for answers is the hardest part of going thru this struggle. Sending lots of good thoughts, prayers, and hugs!

Jenfrombill
05-21-2009, 04:44 AM
Hi,

I have/had severe headaches and I was diagnosed with cluster headaches originally but mine seemed to last longer than they should- they were constant. About 6 months ago I was diagnosed with my occipital nerve being inflamed. They did an injection, which helped 100% to make sure that was the correct problem. My pain would be on one side- in my eyes (like deep in them) behind my ears and down to my neck. My scalp was tender to the touch. I always felt like I had a sinus headache, but didn't. It was extremely painful. This may not be it but it is something to consider. I get injections to control them.

Numpty
05-21-2009, 05:38 AM
Uggh, this sounds horribly familiar!
I saw my GP last month about my headaches as they had become so bad that I called him one day crying that if he didn't help me, I was almost certain I would die during the evening/night. The worst pain ever and trouble is, it could last for days. The pain usually centers behind my eyes and then at the very back of my head slightly lower down. That's when I know its going to be one of the really bad ones.

He thinks that they're migraines although i can't help but wonder if they're connected to my Lupus. I was given tablets to take at the onset of one but those made it about 20 times worse. Now I'm on Half Inderal which I have to take every day. He said I also have high blood pressure so is hoping that the Inderal will help that as well... kill two birds with one stone type of thing.

I should have shares in those 'Cool n Soothe' strips if you have those there. They're like sticky gel strips that you stick to your forehead and leave on for up to 8 hours. They're a godsend as you can still move around easily without having to try and hold an icepack on your head. If I could recommend one thing that you can buy over the counter, then it would be those.. in bulk.

How are you feeling now? ~hugs~

lucky7
05-21-2009, 07:19 PM
Acupunctue is GREAT!!!! Ive found NOTHING that works as well! It helps me in MANY AREAS of discomfort!!! WOO HOO to ACUU!!!!!! I see a neurologist for my migrains and she put me on three different meds for them! UGH! I had side effects from each one so now i just stick to Advil and accupuncture! I would get accu more but its $100 a pop! Insurance wont cover it either! I go about 1-2 times a month if i can. IT HELPS< trust me!!!! :cute:

abbasgirl
05-22-2009, 08:20 AM
I hope that you can find some answers. I have said this numerous times, but I firmly believe that waiting for answers is the hardest part of going thru this struggle. Sending lots of good thoughts, prayers, and hugs!

I believe that's the hardest part too. The waiting. Ugh! Thanks for the good thoughts, prayers, and hugs, froggal.

abbasgirl
05-22-2009, 08:23 AM
Hi,

I have/had severe headaches and I was diagnosed with cluster headaches originally but mine seemed to last longer than they should- they were constant. About 6 months ago I was diagnosed with my occipital nerve being inflamed. They did an injection, which helped 100% to make sure that was the correct problem. My pain would be on one side- in my eyes (like deep in them) behind my ears and down to my neck. My scalp was tender to the touch. I always felt like I had a sinus headache, but didn't. It was extremely painful. This may not be it but it is something to consider. I get injections to control them.

Oh wow...my pain is like that. Deep in the eye, sometimes both but mainly the right eye. I also hurt behind the ears and sometimes the back of my neck will ache so bad with it. At times my scalp is tender also that I can't even touch the hair above it. What kind of injections do you get?

abbasgirl
05-22-2009, 08:35 AM
Uggh, this sounds horribly familiar!
I saw my GP last month about my headaches as they had become so bad that I called him one day crying that if he didn't help me, I was almost certain I would die during the evening/night. The worst pain ever and trouble is, it could last for days. The pain usually centers behind my eyes and then at the very back of my head slightly lower down. That's when I know its going to be one of the really bad ones.

He thinks that they're migraines although i can't help but wonder if they're connected to my Lupus. I was given tablets to take at the onset of one but those made it about 20 times worse. Now I'm on Half Inderal which I have to take every day. He said I also have high blood pressure so is hoping that the Inderal will help that as well... kill two birds with one stone type of thing.

I should have shares in those 'Cool n Soothe' strips if you have those there. They're like sticky gel strips that you stick to your forehead and leave on for up to 8 hours. They're a godsend as you can still move around easily without having to try and hold an icepack on your head. If I could recommend one thing that you can buy over the counter, then it would be those.. in bulk.

How are you feeling now? ~hugs~

I'm going to look for those cool n soothe strips. They sound marvelous! Thanks.

When you get the pain in the back of your head, is it near the joint back there? That's where mine seems to flare from. Sorry about the high blood pressure problem too. That sure makes matters worse for you as if things weren't already bad enough huh? (((hugs))) Have you seen a neuro?

Today my head is still free of that wicked pain! Although the bowels are not having much fun. Yesterday evening they started up either due to the decadron, vitamin D, or both, or who knows? lol. I took two hyoscyamine tablets for that and it gave me such a nasty dry headache. I drank some water with electrolytes in it and that seemed to help some, but I had to wait till it got out of my system completely before I felt significant improvement from that. I thought maybe I cursed myself after I took the hyoscyamine, as if I woke up the giant ogre of headacheville who has been sleeping, and figured I'd wake up today feeling the pain again, but ...nope. *BG*

If I laugh too much, sneeze, yawn, etc... my head and face will ache but if I rest for a bit it goes away again. This sure seems like inflammation but then again it may be nerve related. I do have pain in my toes, ankles, and finger joints that no drugs can touch. Or none I've had so far. The pain feels sharp in those joints. Ohhh...it's such an awful puzzle to figure out. I wonder how much a neuro could help, but then I've never seen one so...

I hope and pray that a huge window opens up and blesses science with new knowledge to help us all live life in less pain.

abbasgirl
05-22-2009, 08:39 AM
Acupunctue is GREAT!!!! Ive found NOTHING that works as well! It helps me in MANY AREAS of discomfort!!! WOO HOO to ACUU!!!!!! I see a neurologist for my migrains and she put me on three different meds for them! UGH! I had side effects from each one so now i just stick to Advil and accupuncture! I would get accu more but its $100 a pop! Insurance wont cover it either! I go about 1-2 times a month if i can. IT HELPS< trust me!!!! :cute:

Wow, that sounds great. I'm going to have to save up some money and try that at least once. Just to see if it helps. I'm glad you've found some relief for that head pain. I've dealt with pain and still do, but when it's in my head it puts me down like no other pain can.

Can anyone explain to me how migraines are diagnosed? Do they just rule out everything else and then suppose it's migraines? I wonder what a neuro would do and if it's something my primary could do herself...like with blood tests?