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Posted 12/22/2009 9:00 PM (GMT 0)
As of right now, I'm only going to my GP and rheumy.  I have a question, though.

If they find other things going on or other symptoms will they refer you to a doctor of a different specialty automatically?

I have told my rheumy in the past about an increase in headaches and migraines and she said well let's watch it and if it gets worse I'll refer you to a neurologist.  She also said she has no idea why I'm having the headaches I'm having (hence the pending referral to the neurologist).

I have had headaches almost everyday for the past week that haven't gone away with any of the over the counter meds I have been taking.  I've also felt kind of spacey.  Also, a few times upon getting out of bed or up from a chair, I have noticed a fuzzy-headed, pressure.  Almost like someone pressing from inside as well as outside my head.  When this happened, my ears also felt like they had pressure (almost like I was in an airplane).  I know this sounds odd.  I think so, too.  I'm just not sure what to make of it.  Could it be med related and not necessarily related to my UCTD?

I've read about the lupus cerebritis, but I'm not too sure what that entails.  It usually seems kind of extreme and I'm not sure how mild the symptoms can range to.

I'm sure I sound like a hypochondriac, but it's just a weird thing that's been happening and the headaches are just frustrating!  My family isn't sure what to make of any of this UCTD stuff since it started and they keep saying that I must be concentrating on things too much.  They keep saying we don't have lupus in the family, so it can't develop to that.

Anyway, any kind of response would make me feel better.  Any experience with anything similar?

P.S.  I'm also kind of nervous because I'm supposed to fly home (New Orleans) from Colorado tomorrow and I'm worried the pressure will make these headaches worse or the stress of everything will make me flare....any tips?

Posted 12/23/2009 9:33 PM (GMT 0)
Hi, I suffer from lupus headaches frequently but the one that got my attention was constant for 1 1/2 months. OTC meds didn't help, RX meds didn't help, nothing helped it. Ended up getting a CT scan just to make sure, it was clear (thankfully), rheumy put me on Pred for 10 days, finally on the 11th day the headache was gone. Then fast forward several months, I experienced the "floating feeling" in my head, that went on for about a month then severe nausea, etc. Had an MRI which was also clear (thankfully), rheumy put me on pred (higher dose than before) for 25 days and it all stopped. Both of these occurrences were Lupus flares.

I do hope you get some relief but more so I hope you get some answers soon. Take care and keep us posted on how you are doing.
Posted 12/23/2009 11:01 PM (GMT 0)
It could be med related, as well as lots of other things. You might want to check your med interactions at www.drugstore.com/pharmacy/drugchecker/default.asp.

I too had a long spell of headaches that didn't go away until we tried an increase in prednisone. If you can call & get your drs permission, you might try increasing a few mg.

I traveled with headaches last Christmas and ended up sleeping 1/2 the time I was gone -- no increase in headache, just no decrease either.

Hope your head is pain-free soonest!
Posted 12/24/2009 1:50 AM (GMT 0)
I get headaches all the time that just won't go away. I take three extra strength tylenol and it helps a bit but doesn't give me full relief. My ears are always full of fluid and I have that weird floaty feeling in my head all the time. I see my rheumy in January so I am going to mention it to him and see what he thinks.

I hope you get feeling better soon!

 

Posted 12/24/2009 2:19 AM (GMT 0)
Hey smokeyswife,

After you go to the rheumy, will you let me know what he thinks about it? I would appreciate it!
Posted 12/24/2009 1:16 PM (GMT 0)
Hi NolatoCO

I will try to remember to let you know,lol. But you know how us Lupies are, my memory isn't so good!

Posted 12/24/2009 2:49 PM (GMT 0)
My wife has a headache most of the time. It began before Lupus was involved and is a function of her similar disease called SREAT.
Since her joints got bad last Feb and she began to be told about Lupus, they have gotten a bit worse. What really set them off though was just a couple of months ago when her Kidneys got involved. I guess what happens is that even though she has been on Prednisone for 4 years, her adrenal glands are still functioning a bit. When the inflamation goes up in the kidneys, the adrenal gland raises her blood pressure. Since she has CNS-lupus and SREAT, there is always some encephalitis at work. When her blood pressure goes up, the pressure in her brain goes up and the headaches become uncontrolable. She was recently hospitalized for pain management because of them.

It might just be her, but you might check and see how your blood pressure is when your headaches start increasing.

It is just a thought
Posted 12/26/2009 6:22 PM (GMT 0)
I've always gotten headaches even before I was diagnosed with Lupus. Usually, I just took extra strength tylenol but when that stopped working my doctor prescribed Midrin. Which you took when you got a headache. You can take one/two..and if the headache doesn't go away you can another one in two hours. But at the max of five a day. They worked for me for a while, and I was just taking 1-2 and they were gone. But after a year or so, they stopped being as effective and I was up to 3-4, sometimes 5. So that's when I was referred to the neurologist. She didn't run any tests, but I described the symptoms and she said that I needed a daily medication for the migraines to prevent them instead. But that I could still use the midrin as needed. So that's when I started Topamax and that's been working for me. Headaches and migranes were non exisistent for once and it really helped. Occassionally I may still get one, but it's definitely not as constant and severe as it was.

The migraines that I got were always on my left side and I always felt a lot of pressure. Like my eyes wanted to pop and it just hurt to even move.

I would ask your doctor if you can try a medication to help with the headaches because this is the first time in years that I've been headache free and I wish I had done so sooner.
Posted 12/28/2009 5:53 AM (GMT 0)
might I suggest you ask about relpax and immitrex as possible treatments, they will often work on lupus headache and work on migraines. another choice is a prednisone taper. I suggest you definately consult a neurologist.
Posted 1/1/2010 6:35 PM (GMT 0)
Thanks everyone for your responses here! For some reason, I didn't get notified by email that I got them, but I thought I marked the little box.

My headaches aren't as frequent now, but they are still around every few days or so. The floating, fuzzy headed feeling still occurs, too, but mainly associated with when I'm not feeling too well-- like during my bad days, since the good days never stick around. Sigh...

I will bring this up at my next appointment and if it gets worse like it was, will call her and speak with her. But, what frustrates me is I never get to actually talk to the doctor! I always get her medical assistant. If I could actually talk to the doc, it would avoid the questions after the MA gets back to me, then waiting for her to call again, etc. etc.

Alrighty, got a little off topic there. Thanks again everybody! My trip home for the holidays was a good one! Didn't deal with too much fatigue or headaches, but now that I got back home, I'm dealing with the consequences I guess. The unfortunate part is that with family I would have had the free time to rest and here I have been non-stop with work since I got back. I took call today since the other nurses requested off and I was trying to keep up with my hours since my vacation. I'm just exhausted!!! I think the rest of my New Years Day will be spent on the sofa.

I guess I should just be thankful that I felt well enough to have a good Christmas and birthday. I would've chosen a good Christmas and Birthday over New Years anyway if I had to choose. Just turns out, I had to choose this year.

Hope everyone is well!
Posted 1/2/2010 3:01 AM (GMT 0)
Hey! I'm just about 45 minutes North of New Orleans. I have alot of family there and in the surrounding areas now. Glad you got to come home for the Holidays. I truly hope your issue is resolved soon. God Bless Ya, Judy
Posted 1/2/2010 3:07 AM (GMT 0)
Hey Judy!

Do you have a good rheumy out there?  There's a possibility I may be moving back to be closer to my family. My "diagnosis" has told me that maybe I need their support and love closer to me after all.

 

Posted 1/2/2010 6:01 PM (GMT 0)
Hey girl! I just responded in your other thread about the rheumy's that I know of in the area. I will be glad to email you their info, but I don't recommend either of them. I will be seeing my nephrologist on the 6th and i'm going to ask her. She graduated from Tulane and trained at Ocshner...she knows ALOT of people. If there's a good one out there she knows them. Since renal problems have been my main issue, or it was for a long time, she acts as my primary and treats the lupus too. I'll let ya know ASAP!!

Hey!! By the way!!! What about dem Saints??!!! WHO DAT?? LOL!!!
Posted 1/2/2010 10:49 PM (GMT 0)
Kelly,

I'm bothered by your doctor's statement that if your headaches get worse, she'll send you to a neuro. Didn't you just tell her they were getting worse? It sounds like you aren't getting what you need from her. I believe that doctors are cool with having a patient tell them that they want a referral. Don't suffer needlessly. This sounds miserable, and I for one think you ought to call for a referral on Monday. As far as seeing the PA instead of the doctor, well that one throws me a curve.

I had foot surgery on Dec. 7 and returned to the surgeon last week for x-rays and to have the stitches removed and for the doctor to take a peek at the foot. As I was waiting to check out I happened to see the doc's appointment sheet for that day. I counted - 55 appointments. They were scheduled 5 to 10 minutes apart. I spent less than 2 minutes with the doctor. That day's charge was $350.

We're all different, but in my book, if my doctor were too busy to see me, unless I was real happy with the care I was getting, I'd be runnin' around looking for a new doc.

I hope those headaches go away and especially that you figure out what's causing them. I saw that Redrose suggested Immitrex. I take it for migraines and it works like a charm for me.

(((Hugs)))

Pat
Posted 1/3/2010 12:45 AM (GMT 0)
I agree with Pat, (you tell em girl!) she is so right tho. If your doctor is not taking your pain serious it may be time for another one. With my headaches I couldn't take Imitrex because it made my chest tighten up real bad, rheumy warmed me of this because I have raynaud's but I don't recall it getting rid of the headache or Maxalt (the one that dissolves in the mouth) worked ok but it just came back the next day. The short dose of pred worked best for me.

I pray you get some relief soon.
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