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Update on persistent headache to Quixotic1
by Sherrizim, Jun 09, 2007 12:00AM
Hi Jeanne,
I read your post about your MS diagnosis and was surprised that the formal diagnosis was so recent. Of course, as you said, the vertigo is more debilitating for you, and you've been dealing with that for much longer. (I've had 2 short episodes of vertigo in the last few years that have lasted only 1-2 days, but I was essentially forced to remain in bed for the duration, so I can easily imagine what it would be like to have chronic vertigo.) I think what was most surprising to me was that, even though you are a doctor yourself, your neurologist thought that you were crazy and "wanted" medical procedures. It's such a shame that valid concern about our own health and assertive persistence can be misinterpreted that way.
Here's an update on my condition. (I've had a rough few days and haven't felt up to posting until now.)
After the MRI came back normal, I had an appointment with an internist who was filling in for my doctor while she was on vacation. He was much more thorough than she has been, but perhaps she would have been at this point, too. I'm sure I was also able to give him a better history at this point than I was able to give my own doc, since I've given my symptoms and what might be causing them so much thought since the last time I saw her.
First, he was not pleased that the MRI had only been done without contrast (that was the way my doctor ordered it, though). He said, for example, that something like a small aneurysm might not show up on an MRI w/o contrast. So, he thought an MRA might be a good idea. With my son's history of pseudotumor cerebri, he took a good look at my optic nerves and determined that they looked fine, thus ruling that out. He did some other simple things like checking all my reflexes and perhaps my muscle strength or resistence or something like that and another couple of other things that my own doc hadn't done. His biggest concern, though, was that my thyroid gland was quite enlarged (hence the feeling that I had a tie tied too tightly around my neck), and I guess hypothyroidism (which almost every female member on my mom's side of the family has) can cause chronic persistent headache. He was hesitant to check for the EBV because he thought there was a good chance it would be positive and yet he didn't think such a finding would be conclusive. He also didn't think an LP was necessarily a good idea, because obviously I didn't have a bacterial CNS infection or even a more serious viral CNS infection, or else I would be far more sick. So, he decided the first course of action was blood work. He hesitated about waiting for the MRA when I said, obviously, if I have an aneurysm, it hasn't blown yet or I'd probably be dead by now, but ultimately decided he was okay with waiting. I decided to trust that decision. I really thought he was on to something when he suggested hypothyroidism. And since he was ordering blood work, he decided to check my ANA, since my mom has lupus.
Well, all my blood work came back normal, including my TSH and T4 (I didn't see T3 on the report but I do know that he checked it off on the order), except for my ANA, which was positive. Since then, I've read that 95 percent of people with a positive ANA do not have lupus (at least don't meet criteria for the diagnosis), so I'm not freaking out over that at this point. Especially since I don't think my headache and the positive ANA are likely to be related. I don't know what to make of the normal thyroid results, though. I asked him what the enlarged thyroid meant, in that case, and he said, It means nothing. Hmm. Not sure that answer satisfies me. But I'll let it go for now.
At any rate, he referred me to a neurologist and to a rheumatologist. (I got a little upset when he referred me to the same rheumatologist my mom sees and then I found out that he doesn't take my insurance, so I'd have to see someone else.) I have appointments with those doctors in about 1 1/2 weeks. He also ordered the MRA, which is scheduled for next week. In the meantime, I decided to go back on the small dose of Effexor (37.5 mg once a day) that I was taking prior to the onset of my headache (as soon as I can get the Rx filled later today), just to see what happens. Maybe that's all the headache is about.
I think that's it for now.
Thanks for your support,
Sherri
I read your post about your MS diagnosis and was surprised that the formal diagnosis was so recent. Of course, as you said, the vertigo is more debilitating for you, and you've been dealing with that for much longer. (I've had 2 short episodes of vertigo in the last few years that have lasted only 1-2 days, but I was essentially forced to remain in bed for the duration, so I can easily imagine what it would be like to have chronic vertigo.) I think what was most surprising to me was that, even though you are a doctor yourself, your neurologist thought that you were crazy and "wanted" medical procedures. It's such a shame that valid concern about our own health and assertive persistence can be misinterpreted that way.
Here's an update on my condition. (I've had a rough few days and haven't felt up to posting until now.)
After the MRI came back normal, I had an appointment with an internist who was filling in for my doctor while she was on vacation. He was much more thorough than she has been, but perhaps she would have been at this point, too. I'm sure I was also able to give him a better history at this point than I was able to give my own doc, since I've given my symptoms and what might be causing them so much thought since the last time I saw her.
First, he was not pleased that the MRI had only been done without contrast (that was the way my doctor ordered it, though). He said, for example, that something like a small aneurysm might not show up on an MRI w/o contrast. So, he thought an MRA might be a good idea. With my son's history of pseudotumor cerebri, he took a good look at my optic nerves and determined that they looked fine, thus ruling that out. He did some other simple things like checking all my reflexes and perhaps my muscle strength or resistence or something like that and another couple of other things that my own doc hadn't done. His biggest concern, though, was that my thyroid gland was quite enlarged (hence the feeling that I had a tie tied too tightly around my neck), and I guess hypothyroidism (which almost every female member on my mom's side of the family has) can cause chronic persistent headache. He was hesitant to check for the EBV because he thought there was a good chance it would be positive and yet he didn't think such a finding would be conclusive. He also didn't think an LP was necessarily a good idea, because obviously I didn't have a bacterial CNS infection or even a more serious viral CNS infection, or else I would be far more sick. So, he decided the first course of action was blood work. He hesitated about waiting for the MRA when I said, obviously, if I have an aneurysm, it hasn't blown yet or I'd probably be dead by now, but ultimately decided he was okay with waiting. I decided to trust that decision. I really thought he was on to something when he suggested hypothyroidism. And since he was ordering blood work, he decided to check my ANA, since my mom has lupus.
Well, all my blood work came back normal, including my TSH and T4 (I didn't see T3 on the report but I do know that he checked it off on the order), except for my ANA, which was positive. Since then, I've read that 95 percent of people with a positive ANA do not have lupus (at least don't meet criteria for the diagnosis), so I'm not freaking out over that at this point. Especially since I don't think my headache and the positive ANA are likely to be related. I don't know what to make of the normal thyroid results, though. I asked him what the enlarged thyroid meant, in that case, and he said, It means nothing. Hmm. Not sure that answer satisfies me. But I'll let it go for now.
At any rate, he referred me to a neurologist and to a rheumatologist. (I got a little upset when he referred me to the same rheumatologist my mom sees and then I found out that he doesn't take my insurance, so I'd have to see someone else.) I have appointments with those doctors in about 1 1/2 weeks. He also ordered the MRA, which is scheduled for next week. In the meantime, I decided to go back on the small dose of Effexor (37.5 mg once a day) that I was taking prior to the onset of my headache (as soon as I can get the Rx filled later today), just to see what happens. Maybe that's all the headache is about.
I think that's it for now.
Thanks for your support,
Sherri
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Did he get a "sed rate" also known as an ESR?
What are your current symptoms? Apparently you're still feeling wretched.
I can't disagree with the MRA. Severe headache - persistent - why not be extra cautious. I don't diagree with restarting the Effexor either, though I remain surprised that such a low dose is effective. But if it is, it is. Can't argue with reality.
Keep me posted, I enjoy talking to you, Quix
I was really glad to hear from you. Your thoughts about my test results mean a lot to me.
My ANA was 1:1280 and demonstrated a homogeneous pattern. I know that's high. Does that make it any less likely that the result is a false positive, or not?
All I found regarding sed rate was "Sedimentation Rate rbc," which at 3 was in the normal range. I didn't see ESR anywhere on the report. Are the two the same?
My primary symptom is the throbbing headache, which has been at a moderate level of pain with no relief for about the last 6 days. I think the 2 1/2 days I had of mild pain spoiled me. I also think that the longer this headache lasts (it's been 28 days now), the more it is wearing me down. Physically and emotionally. I also returned to work (part-time, 20 hours a week), and once I leave for the day, I just want to lie down in bed and try to get some relief from my headache. But this was also my children's last week of school, which necessitated some errands after work (e.g., to buy teacher gifts). I'd sign on to post and then not have the motivation to follow through. Thinking hurt too much, and my bed was calling!
I will, of course, mention the enlarged thyroid to both specialists, but especially the rheumatologist, and see what they think. It could be simply post-viral swelling, right?
So far, resuming Effexor hasn't changed anything, but I've only taken 2 doses at this point.
I will keep you posted. My husband is pretty frustrated with me by now, since so much more work is left to him than usual (which was already the case while I was taking classes, anyway), so he's finding it difficult to be supportive. On the other hand, his mother died about 25 years ago of complications related to lupus (kidney failure), so he isn't totally unconcerned.
I enjoy reading your comments to others, too. You are truly a blessing to so many people on this forum.
Sherri
The Sedimentation Rate of 3 indicates that there is not an active focus of major inflammation anywhere. That is very reassuring. Active Lupus always (I think) has an elevated sed rate. Normal for adult women 0 - 20mm/hr.
Uh, yeah....that's a very high ANA. I think (don't you love how sure I am of everything this morning?) that it may actually be an indicator. I suspect the rheumatologist will take it and run a bunch more tests. Whether or not it is related to the headache, I don't know.
You need a thyroid scan. You may have had a viral thyroiditis - it's not common.
I still think you have either a post-viral syndrome/headache. Or you had aseptic meningitis (viral meningitis) and you're going to have a headache for a while.
Chronic pain is enormously draining. Sorry hubby is not supportive. Hit him over the head with a hammer and you can have some together time in bed, lol.
Is, or was, your neck stiff? Not muscle stiff but "lightening down your spine" stiff?
Talk to you later, have company coming. Thanks for your nice words. I live for seeing responses to my posts. It's great to have contact with the outside world. I leave home only for Dr.s visits and therapy. Quix
I hope you had a good time with your company today. I actually went in to work to get caught up on some paperwork I've been neglecting - a a final report on a psychoeducational battery and some closing summaries. I'm currently working at a university counseling center but will be leaving there at the end of July to work as an independent contractor in a private clinic. (I would staty at the counseling center if I could, but it is a time-limited position.) That is, unless I decide to rent an office with a couple of my friends so that I don't have to give the clinic 45% of what I take in. I'm not really thinking much about that these days, though....especially since I haven't even gotten my preliminary exam out of the way yet.
You asked about neck stiffness, and I can't really say that my neck has been stiff like I imagine it is in meningitis. Yes, I have found myself massaging my neck a lot and feeling like my neck and back need to "crack," but I've been able to touch my chin to my chest with only minor discomfort for the duration of my headache. I think the only time my neck and back was really really sore/stiff was shortly after I took that sample of Zomig.
Would I have to see an endocrinologist to have the thyroid scanned, or would the rheumatologist order that if he thought it was related to some sort of autoimmune problem?
My headache was intense this afternoon while I was at work, but I noticed this evening while grocery shopping that it wasn't as bad. I took a fiorinal while at work, but usually that doesn't give me this much relief, so I'm interested to see what tomorrow is like. Maybe it's only a brief reprieve like I had not long ago, but maybe, just maybe, the headache is resolving, for whatever reason.
I'm off to bed. Have a good night. I'll talk with you later!
Sherri