Headaches

[Poppy64]

Dr. Has been decreasing my prednisone. Just started 5mg on Saturday and I have been waking up with a headache every day since. Is this common?

[pberggren1]

I would say it is not too common though I have had mild headaches when tapering on the pred in the past.

[Dirty Don]

The only issue with pred tapering is if one does too much too fast, then headaches can occur cuz the inflammation can increase again slightly, thus giving one a headache (kind of like blood rushing to an area)...literally and figuratively!

[Alysia]

I have some headaces from time to time. but I think that they are because of sinus inflamations and/or ears issues.
I have MRI of the brain next week. I hope my brain is ok.

[windchime]

Dr. Has been decreasing my prednisone. Just started 5mg on Saturday and I have been waking up with a headache every day since. Is this common?

I get headaches for several days after tapering. More noticeable when I cough then it's bad.

[windchime]

I have some headaces from time to time. but I think that they are because of sinus inflamations and/or ears issues.
I have MRI of the brain next week. I hope my brain is ok.

Alysia I hope your brain is okay too. I've had a brain MRI and it's an easy procedure. You do well. Good luck. :hug1:

[Lilly]

I also believe my headaches are from my frontal sinuses in my forehead. They get infected, but they will not operate on them because it is risky. If it gets too bad in the future, they can do a surgery where they just basically "blow them out".......or crush them. They are small, but so close to the brain, so only in extreme circumstances will they even do it. My EENT just puts me on antibiotics if mine get hurting too bad.
Alysa, I know everything will be fine. I get nervous before my every 2-3 yr ct scans, so I know exactly how you feel!! Its just like "What if?" But thats what diseases like ours do to us and others. It makes us gun shy. Its like, we got sick once, now whats to keep it from getting worse? But then, the scan/test etc. comes back OK, and that nice sigh of relief.......Its good to know Im OK for now! We just need to Trust that we are stronger than this disease, and we can face whatever it takes! Goodness knows that 23 years of this, yes I am tired of living with it, but I am glad to be living. I get depressed, it has stolen a lot from me, even my husband, but we just gotta keep going! Sorry I got off on a little tangent! Ive had a rough couple days, and a bit nervous about some things myself......but Im just trying to hold up and keep pushing myself. Lets just stay strong and do our best! :)

[Alysia]

I have some headaces from time to time. but I think that they are because of sinus inflamations and/or ears issues.
I have MRI of the brain next week. I hope my brain is ok.

MRI brain results came: my brain is ok :biggrin1:
whew...
https://fbcdn-sphotos-d-a.akamaihd.net/hphotos-ak-ash3/t1/1925061_1467560460122766_968515922_n.jpg

[mishb]

Yay that's an excellent result Alysia.

However, that doesn't explain the headaches :sad:

[annekat]

I'm thrilled to hear that your brain is OK, Alysia!:thumbup:

[MikeG-2012]

My latest flare up was all sinus. The headaches were excruciating and I was on three different pain meds to make it so I was at least somewhat functional. Some of my headaches were 9/10 on the pain scale. I have an extrremely high tolerance for pain, so a 9/10 is nothing short of me being comatose.

After the RTX infusions, my sinuses are getting better and I don't have the bad headaches like I was having. They still come now and then, mostly when weather is taking a major turn. Now they Max out at about 5/10.

So headaches are certainly part of my wegs complications.

[annekat]

I only remember having really bad headaches right before diagnosis. My whole eye area and face were tight, with what felt like hardened, swollen veins. The doc in the hospital didn't talk to me much about this because he was focusing on my lungs. I know my maxillary sinuses, the ones under the cheeks, were inflamed and red. I imagine the headaches were from inflammation in the frontal sinuses, as indicated above. I have never felt worse than I did right then. Since, I haven't had headaches to speak of. But I don't doubt that this could happen when tapering pred. For me it doesn't, so far... instead, I get a temporary Wegs rash on my forearms, some moderate joint pain, and a little more general fatigue.

[Pete]

I only remember having really bad headaches right before diagnosis. My whole eye area and face were tight, with what felt like hardened, swollen veins. The doc in the hospital didn't talk to me much about this because he was focusing on my lungs. I know my maxillary sinuses, the ones under the cheeks, were inflamed and red. I imagine the headaches were from inflammation in the frontal sinuses, as indicated above. I have never felt worse than I did right then. Since, I haven't had headaches to speak of. But I don't doubt that this could happen when tapering pred. For me it doesn't, so far... instead, I get a temporary Wegs rash on my forearms, some moderate joint pain, and a little more general fatigue.

Hey Anne,

Have you had any tooth pain or sensitivity that could be attributed to maxillary sinus inflammation?

Thx!

[annekat]

Pete, I did have tooth pain and sensitivity along with gum inflammation around the time of the big flare that got me diagnosed, when the maxillary sinuses were inflamed as well. I hear that tooth and gum issues aren't uncommon with Wegs, whether related to sinus inflammation or not. All these issues were taken care of with treatment. A year later, I did have to have 2 wisdom teeth and 2 molars extracted because I had neglected to have the wisdom teeth removed much earlier, when they should have been, and they rotted and the rot spread to the neighboring molars. This probably would have happened anyway, but I suppose could have been helped along by Wegs. No tooth problems at present, and the remaining molars and wisdom teeth appear to be OK at this point.

Hey Anne,

Have you had any tooth pain or sensitivity that could be attributed to maxillary sinus inflammation?

Thx!

[Debbie C]

I get headaches when the climate changes. If it is in between rain and shine or if we are getting a real bad cold spell. And a killer headache last week that kept me in bed all day.I would make a great weather person !!

[vic flange]

The only issue with pred tapering is if one does too much too fast, then headaches can occur cuz the inflammation can increase again slightly, thus giving one a headache (kind of like blood rushing to an area)...literally and figuratively!
That's exactly what happens with me. I'm on 4mg a day now and have been for about 6 months. Just lately though I've had very intense headaches right along my brow.

I'm seeing my rheumatologist soon and I reckon he'll up my dosage again.

[LisaT]

I've been having brutal headaches--more like an ongoing headache that either lurks or flares but never fully goes away.... At times it is bad enough that I think it's a migraine. It feels like a tension headache/muscular but I don't know how to be sure. As far as I'm aware, I have nasal and throat issues but not sinuses. Does anyone know whether brain imaging to rule out wegeners in the head is part of the standard assessment/treatment? None of my drs (GP, rheumy, respirologist, two ENTs, second rheumy consult, cardiologist) have suggested or ordered it (?!? Wtf pardon my French), but this thread makes me wonder... I've told every one of them about my worsening headaches and if I have systemic inflammation it seems that it would make sense to check my foggy brain too...

[annekat]

I hate it when docs don't want to deal with new symptoms or those which vary from the straight and narrow path they've been operating along.....

[windchime]

It feels like a tension headache/muscular but I don't know how to be sure.

Lisa where is your headache located? Usually tension headaches are felt at the base of the skull and can radiate up over to your forehead. Usual causes are being on your computer and looking down. Looking down at your tablet and phone for lengthy periods of time. These I have first hand experience with. Do some neck stretches and try a warm wrap or heating pad to the back of your head. You can get wraps that you throw into the microwave at most drug stores. The heat will help relax the muscles if they are tight.

With all that being said I would still mention it to my doc. I don't believe it's part of the standard assessment as wegs of the brain is rare. There are a few with it on here, but it's still rare. It could also be a side affect of one of your meds.

[Alysia]

I've been having brutal headaches--more like an ongoing headache that either lurks or flares but never fully goes away.... At times it is bad enough that I think it's a migraine. It feels like a tension headache/muscular but I don't know how to be sure. As far as I'm aware, I have nasal and throat issues but not sinuses. Does anyone know whether brain imaging to rule out wegeners in the head is part of the standard assessment/treatment? None of my drs (GP, rheumy, respirologist, two ENTs, second rheumy consult, cardiologist) have suggested or ordered it (?!? Wtf pardon my French), but this thread makes me wonder... I've told every one of them about my worsening headaches and if I have systemic inflammation it seems that it would make sense to check my foggy brain too...

I had terrible headaches when I tried to reduce my pred.
I also went to neurologist who sent me to MRI to rule out brain involvement. the MRI was ok.

[pberggren1]

Are your headaches gone now sweetie?

[Alysia]

Are your headaches gone now sweetie?
most of them. yes. Thanks :wub:

[LisaT]

Lisa where is your headache located? Usually tension headaches are felt at the base of the skull and can radiate up over to your forehead. Usual causes are being on your computer and looking down. Looking down at your tablet and phone for lengthy periods of time. These I have first hand experience with. Do some neck stretches and try a warm wrap or heating pad to the back of your head. You can get wraps that you throw into the microwave at most drug stores. The heat will help relax the muscles if they are tight.

With all that being said I would still mention it to my doc. I don't believe it's part of the standard assessment as wegs of the brain is rare. There are a few with it on here, but it's still rare. It could also be a side affect of one of your meds.

Thanks Cindy, my headaches feel very much like tension headaches and I apply both heat and ice to the base of my skill and those 'looking down' neck muscles (sternocleidomastoids, don't ask me how I know this but it could be because they've been hurting for 30 years! :predrage:) I have a whole arsenal of pain management stuff I throw at them… heat wraps, creams, massagers, rolling on two tennis balls in a sock, sticky heat/ice wraps that you wear under your clothing etc. etc. I'm heading out for a massage appt. in half an hour and can't wait! I might even go nap afterwards at a friend's while my babysitter picks up my kids. I've been feeling like a need a peaceful, quiet few hours away from responsibilities… I think just to be on the safe side I will also ask one of my docs whether I need a brain scan. Then they will have effectively looked at every inch of my insides.

[LisaT]

I had terrible headaches when I tried to reduce my pred.
I also went to neurologist who sent me to MRI to rule out brain involvement. the MRI was ok.

I am in the midst of trying to taper down my prednisone, but the headaches started before both the prednisone and the taper… Still, it could be contributing. Glad to hear your headaches are better!

[windchime]

Lisa, hope you enjoyed the massage and it helped the headaches. Get your kids to give you a scalp massage. They will have fun and you will feel better.

[LisaT]

Great idea, Cindy! I sometimes have the kids walk on my back, but they end up fighting over me... :laugh: The massage was amazing. It reassured me that my headaches are from muscle tension because she found all sorts of knots in my neck and around my jaw, at the base of my skull which refers pain to the eyes. I then went to my friend's place for lunch and a nap in her tempurpedic bed (comfiest bed in the world!) so as not to be woken up by my kids... I napped for two hours! Heavenly afternoon that definitely helped with both my pain and my anxiety. The two weeks between now and my next chest ct would go by more quickly and easily if I could do that every day.;)

[LisaT]

My headache is back with a vengeance. I notice it's overcast and 'heavy' outside today so wondering whether barometric pressure is affecting it. Feeling discouraged, but I know it will pass. Trying to get a hold of my GP for referral to pain clinic and MRI or neurologist. Just thought I'd share.

[annekat]

I wouldn't doubt the barometric pressure. I know someone who complains about that all the time and I used to think she was a hypochondriac, but I've rethought that. I don't have the headaches but have begun to suspect it can affect ear and sinus pressure. Not to a huge degree for me but could be worse for others. I have searched the web on this subject and did find some feedback on it, suggesting it is a real phenomenon.

[LisaT]

My mom's migraines are definitely worse/ more frequent depending on the pressure.

[LisaT]

I just have to whine a bit more. The worst thing about this is having to repeatedly tell my kids I 'can't play', or do whatever else they're asking me to do with them or for them. Hubby has plans to keep them pretty busy this week but has a dental appt. today. They've had way too much screen time and too little mommy time. I will feel less guilty when my sitter arrives and they do something more active. Of course, they can do active things without her, but they argue a lot and both seem to be enjoying lazing around today... I don't have the strength to keep redirecting. They have a TON of toys, books, puzzles, art supplies and projects, outdoor things like water guns, balls and games, even a trampoline... So it's not for lack of things to do.

[annekat]

Whining, or whatever we want to call it, is OK. I really hope you can get these headaches resolved and feel better.

[LisaT]

Thanks! And thanks for listening...

[MikeG-2012]

My headache is back with a vengeance. I notice it's overcast and 'heavy' outside today so wondering whether barometric pressure is affecting it. Feeling discouraged, but I know it will pass. Trying to get a hold of my GP for referral to pain clinic and MRI or neurologist. Just thought I'd share.

Lisa, my headaches were the only indication that I was having a flare up. Perhaps your meds are not working? My migraines were off the pain chart some days. Some days, they were a 6/10, others 12/10. I was on three different narcotic pain killers. One for sleepy time, one that was loopy time and the third that wasn't as strong and let me go to worky time. (-8

Once I went on high dose pred again and started RTX infusions, headaches virtually disappeared. I still have a blocked upper sinus passage and ENT said he can open it with a balloon procedure, but he wants to wait until sinuses recover a little more before he does it. he doesn't want to do a multi-thousand dollar procedure and then have it only last two weeks and close back up.

So, if your drugs/meds are not working and the disease is still "festering" in your sinuses, that could be the cause of the headaches.

Hope you can find some relief soon!!! I KNOW WHAT YOU ARE GOING THROUGH!!

[LisaT]

Thanks, Mike. My sinuses apparently look good, so the source might be different although I definitely feel a connection (pressure in sinuses and ears, which also apparently look good). I see my doc tomorrow and will try to get to the bottom of it. Were your labs fine when you had the headaches? Mine are ok... I'm curious which drug was the go-to-worky drug. I've been taking only Tylenol because I can't be loopy when caring for my kids... Which is all the time pretty much. When I have taken stronger pain killers or Ativan in the past they've pretty much knocked me out, for the day if I take a normal dose. (I've taken 1/4 of an Ativan for dental work, then I remain awake but very loopy. So I have a very low tolerance.)

[windchime]

Sorry to hear the headaches are back or never left. I found Tylenol to be a useless drug. Years ago I would take it and wonder why my headaches never went away. Maybe something like Ibuprofen, Excedrin Migraine or one of the other NSAID's. They can be hard on the stomach so make sure you take with food. They will also help with inflammation so if that is the reason for the headaches it might do a better job for you. At lease they shouldn't make you loopy. Feel better. :hug1::hug1:

[MikeG-2012]

Thanks, Mike. My sinuses apparently look good, so the source might be different although I definitely feel a connection (pressure in sinuses and ears, which also apparently look good).

That is good news!


Were your labs fine when you had the headaches? Mine are ok...

My inflammation markers were off the charts.


I'm curious which drug was the go-to-worky drug.

That was tramadol. I took it once I got to work, so I wasn't driving on it.

[Alysia]

Hi Lisa,
I am sorry that your headaches are still there :sad: time to find out what is it and to fight it....
as for the kids, it is ok, and even important that kids will know also to play by themsleves.... they only need your presence there.... it is even better sometimes to just be there without interupting their play, it will give them more confidence in their abilities and in their strengths.

[LisaT]

Sorry to hear the headaches are back or never left. I found Tylenol to be a useless drug. Years ago I would take it and wonder why my headaches never went away. Maybe something like Ibuprofen, Excedrin Migraine or one of the other NSAID's. They can be hard on the stomach so make sure you take with food. They will also help with inflammation so if that is the reason for the headaches it might do a better job for you. At lease they shouldn't make you loopy. Feel better. :hug1::hug1:

I'm on a daily anti-inflammatory that's stronger than ibuprofen (flurbiprofen), so when that's not working I don't think there's any point taking more of the same (in fact I think it would exceed recommended doses). I took tramadol once after a surgery (unrelated to this disease), and it helped with pain but made me sleep for hours... And when my GP recently prescribed it for pain, my pharmacist recommended against my taking it due to potential interactions with some of my other meds. I will ask her again about options. The pharmacist said morphine or Ativan (which is a muscle relaxant in addition to anti-anxiety) are safer options. Same problem with maintaining 'consciousness' while using those. Next time a really bad headache hits I'll try one when I don't have to drive or take care if the kids and see if it helps. I think I'm likely better off just using the medical marijuana... Certain strains are known for helping headaches, so I'll talk to the dispensary again about that.

Mike, I'm glad to hear your headaches are under control (or gone?) and that you're feeling better! That's very encouraging.

[windchime]

Time to see the doc Lisa and find out what's going on. You can always start with your GP and get going on some kind of testing if they are willing. I feel for you as I hate head pain. I hope you can get to the bottom of this.

[LisaT]

Time to see the doc Lisa and find out what's going on. You can always start with your GP and get going on some kind of testing if they are willing. I feel for you as I hate head pain. I hope you can get to the bottom of this.

Thanks, Cindy. How are you feeling?

[windchime]

Today a lot of muscle pain, but other than that ok.

[LisaT]

I hope the muscle pain gets better.

[Alysia]

Today a lot of muscle pain, but other than that ok.
I am sorry for your pains Cindy :sad: do you know why you have them ?

[pberggren1]

Lisa, get those headaches checked out ASAP. And one more word: CHIROPRACTOR!!!!!

And, don't take the ibuprofen stuff, it is a NSAID. Not good for us Weggies to take. Hard on the heart and stomach to say the least.

[godgirl]

Lisa -

Have you ever tried Excedrine Migraine? I have suffered headaches and migraines for years. I take sumatriptan for my bad migraines, but if I just have a bad headache, Excedrine Migraine does the trick. There is asprin, acetaminophen (Tylenol) and caffiene in it. Tylenol alone doesn't do anything for me, but in that mixture, it helps a lot. The only problem I have with it is that it makes me a bit jittery because of the extra caffiene. And from what my GP says, you can take it with ibuprofen because they are different "families" of drugs. Although, I'd probably check with your doc first.

And I second what Phil says - go see a chiropractor. They can really help.

Hope you feel better!

Jen

[LisaT]

Thanks, Jen. I will ask my doc about excedrin migraine. I think perhaps the Asa is a no-no with the flurbiprofen. I would like to stop the flurbi but I get (even more) body pain when I don't take it. Maybe I'll try quitting flurbi and upping my natural pain relief (CBD tincture from hemp or marijuana).

[godgirl]

Yeah, it really works for me.

Earlier this year I had an MRI to rule out brain involvement. They found scarring on my brain, and the neurologist suspects its due to migraines. She told me to try riboflavin (vitamin B2) in high doses to prevent them. I had taken Topomax for a while, but it made me tired all the time.

I've been doing 400mg riboflavin a day for a couple of months now. And I think it's helping my headaches/migraines. I track my migraines for my doc, and I've noticed a decline. So, for whatever that is worth... :)

Jen

[LisaT]

Thanks, Jen. I'll add B2 to my list... I'm glad your headaches are decreasing. I should track mine.

My doctor is ordering an MRI. I'm somewhat less concerned because she checked me for any obvious signs of neurological/brain involvement/ pressure in my head and didn't find any. I've also recently had my eye pressure checked, which I'd forgotten about. Also my answers to her detailed questions led her to believe the headaches are muscle tension. (Have I mentioned how grateful I am to have her? It is such a different experience from some other doctors to feel respected and heard and work as a team.) I'm paying more attention to when and how the headaches begin. Sure enough, when my kids started fighting yesterday and my tween daughter flew into a tween rage/tantrum more spectacular than any I'd witnessed before, I felt one coming on... All the more reason to sit my kids down and discuss behaviour, stress and its impact on everyone.

I didn't realize migraines could leave scarring. Yikes. Does it cause any problems?

[godgirl]

Lisa-
Sounds like stress headaches to me, too!

Tracking my headaches has been useful. I started doing it for work. I applied for and received Family Medical Leave (intermittent) for them and I wanted to track them for that. My GP now asks for the tracking sheets every 4-6 months now just to see how I'm doing.

What was helpful this year with it is that I noticed a significant increase in them around August of last year. I also had blurriness in my eyes and even went for an eye exam in September. I thought they might be sparking from eye strain. Unfortunately, the eye doc was a real arrogant jerk and treated me like I was wasting his time. Said everything was normal. Didn't even do a slit lamp exam.

Well, I struggled for 2 months with the headaches/migraines and blurriness. And in late November, my scleritis showed up. Went to a different eye doc (this one is great) and then this journey with Wegener's or Cogan's or whatever, started with me. I look back on my tracking sheet and now see an early flare.

As for scarring causing problems? My neurologist said it shouldn't. Try a chiropractor, too. They can really help. And massage as well.

Good luck and I hope they can get to the bottom of it soon. Migraines and headaches suck!

Jen

[Michael Bell]

there is a plant called feverfew which can be used as a tea or as an infusion, which I have used a few times for migrane. It grows as a weed in the UK and I have it in the wild part of my garden. I do not know how this will react with Weggies meds but i have suffered no ill effects and find it very fast acting.
Mike

[annekat]

there is a plant called feverfew which can be used as a tea or as an infusion, which I have used a few times for migrane. It grows as a weed in the UK and I have it in the wild part of my garden. I do not know how this will react with Weggies meds but i have suffered no ill effects and find it very fast acting.
Mike That's interesting, Mike. Feverfew grows in my yard here in Olympia, Washington, like a weed, as you say. But it varies from year to year and this year it is overwhelmed by other weeds, I guess. But it can easily be grown here. My sisters have had migraines and I would have offered it to them if I'd known. Now their migraines seem to have stopped with menopause. But it is nice to know a common plant like that can really help a painful and aggravating condition.

[annekat]

Lisa, that makes two of us with the MRI. I'm supposed to schedule one tomorrow, for different reasons than yours. I have no headaches, thankfully. Mine is for double vision and vertigo. The eye doc says the double vision may well be caused by bone erosion in the sinuses near the eye, and the vertigo is likely an ear issue, which I'm working on with my ENT. But they do affect each other to some degree. My eye pressure was found to be fine. Eye doc doesn't think it's a brain problem, but wants to cover all the bases. Anyway, you are probably a little nervous about it, understandably, as I am, since we don't know what it might uncover. Best wishes to both of us for results indicating nothing life threatening, and to you for getting your headaches resolved.

[Beverly]

Anne & Lisa,
How were your MRIs on Mon. You may not know results yet...of course we are anxious to hear from both of you.

You guys on this forum are rich in your comfort, encouragement:hug2:, information and research ability for each other. I am daily impressed with you and how much time you are willing to invest in each other :love:.

Will be looking for your reports, Lisa & Anne!

[annekat]

Beverly, my MRI isn't until next Tues., the 8th. I will give you a report when I find out the results. I'm of course hoping there will be nothing out of the ordinary that we don't already know about, unless it is something that will help explain the situation a little better. We do invest a lot of time in each other, don't we? And I appreciate the time YOU spend in joining in on the discussions.

[LisaT]

I consider it also to be time invested in myself so it's two birds with one stone. :) it is such a comfort and support being on here and hearing from and talking with others in similar situations.

Beverly, thanks for the reminder. I accidentally walked out of my doc's office with the form they needed me to complete, also forgot they'd left me a voicemail about and will now dig it up. I expect the wait for the MRI here will be weeks, if not months. Don't hold your breath. But I will keep you posted when I have results for sure.

[Beverly]

Sorry Lisa & Ann....

It does pay to read carefully. Scheduling is different from actually "going for"! At least I was able to reply. Was without cell service for 5 days and was missing you all greatly. I was walking around saying, "I miss my new friends".

I hope for you Lisa that headaches are not as bad or as often.

Love to both :biggrin1:

[annekat]

Sorry Lisa & Ann....

It does pay to read carefully. Scheduling is different from actually "going for"! At least I was able to reply. Was without cell service for 5 days and was missing you all greatly. I was walking around saying, "I miss my new friends".

I hope for you Lisa that headaches are not as bad or as often.

Love to both :biggrin1: That's OK.... the scheduling seems easier here.... I called Tuesday and could have had it done today, but I chose next Tuesday.

[Alysia]

that is very sweet of you to ask Beverly, even tough it is not the time yet :hug2:

[LisaT]

Yes, it was nice of you to ask, Beverly. And here's where the canadian health care system can fall short: I went to the dr's office to complete the MRI form yesterday because of course after forgetting the first time, then forgetting I had it, I lost it. (But my insurance company figures I can competently manage putting together 1,000-page legal manuals regularly.) anyways, I chatted a bit with the receptionist about it after filling out the form. Apparently the wait for the MRI could be as long as a YEAR! Makes you wonder how many people end up cancelling because their condition becomes no linger compatible with life while they wait for a test. I'm sure if it became urgent my dr would get on the phone and figure something out. If I were declining and really worried I could also go to a private clinic. However I have no obvious neurological symptoms, and the headaches have improved especially with longer walks where I get a but more actual cardio, so I think I'm ok to just wait for now. If anything weird happens I'll reconsider. I used to panic whenever I had an upcoming test, but I've learned not to... So many other posts I want to catch up on, but will have to try later because my house is a disaster and I'm Exhausted.

[LisaT]

I am using this thread to provide an update on where I'm at since headaches seem to be my biggest problem symptom at the moment. The headaches are somewhat less frequent than a while back. I really need to start tracking them so I can say for sure. Unfortunately I have a headache today, but it's getting better as I ice, heat, massage etc. I hate waking up in such pain that I feel like puking. That was me at 4 am today. It's not so bad now.

I met with my rheumatologist this week with a huge list of questions and issues. He was helpful and listened and answered, and knew more about the adrenal glands and what happens to them while on prednisone than I was giving him credit for. He didn't say much about the headaches but he knew my gp was already scheduling an MRI. He did explain that the reasons he's not putting me on stronger drugs like RTX are that my organs are all ok, I don't have really scary/distressing symptoms like coughing up blood, bad nosebleeds etc., and we need to 'save' the big guns for when or if I really need them. My labs look okay. I said, ok so how do we get me back some quality of life? I'm very grateful that I don't have major organ involvement, AND I want to do more than survive. I want to feel better, and have some semblance of energy and a normal life. Also, my symptoms were present for years before the disease made its presence known in my bloodwork, so isn't it entirely possible that it's active but not showing up in labs? He seemed to take that point, because he said let's try increasing the Imuran and see if that helps me wean off the prednisone with fewer or less severe symptoms. So, I'm a few days in to a higher Imuran dose. Unfortunately, I feel like crap. :bored: But I'm pretty sure it's not related. My son had a cold this week and I seem to always have a day or two of fighting off whatever bug he's brought home. So, I've taken my oregano oil, slathered my feet with essential oils, and will have a bunch of vitamins soon. I've been sitting on the couch alternating ice and heat for my headache and catching up on what's happening with my GPA/Wegs family. My family are away for the night tonight so I will lounge with purpose for 24 hours in the hopes that it will help. My concern now is that I'm headed to Calgary to help my family there as my mom is recovering from a hip replacement. If I feel this way there, I'll be of no help to anyone and may even be an added burden, which is the last thing I want. But I'm optimistic that this will be a blip and I'll get back to feeling better. I must research side effects and see whether the increased Imuran could be causing the nausea though. I have a much better capacity for dealing with pain (thanks to decades of practice) than nausea. I can't stand feeling nauseous. I don't like to whine when others here have bigger problems. It's just not my favourite symptom.

[Alysia]

Lisa, def Imuran can cause nausea. for me it caused also vommiting untill I couldn't bear it.
and it is totally ok for you to share your pains. headaches are so aweful :crying: because after all we mostly need our head to get around.... but I am also thinking about your poem from another thread, that about being, and sometimes when we "use" our head too much, think too much, holding oursleves "inside" out heads, and this sure can make headache or make the headache worse. I hope you will soon feel better. sending my hugs and prayers. :hug1: