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  • Not Gonna Listen! - LOOONG

    So I promised this story a few days ago and didn't deliver. Sorry, life hates me a bit right now.

    My husband suffers from migraines on a nearly daily basis at the moment, probably due to the stress of his job. Well, our PCP started him on a low dosage of Topiramate to see if it would work for him and referred him to a neurologist, to see if the neurologist might know of some new treatments to help him.
    It took a bit of doing from my PCP to get the appointment with the neurologist they wanted. We'll now name the neurologist NGL, as you will soon understand why. We get there 15 minutes early (which is AMAZING with an infant AND the Hot Springs traffic!) and... they were/n't open? Well, the office waiting room door was open, lights were on, but no one was there? Okay, fine, we were expecting to wait due to being early. Yeah.. that was stupid, because we got hit with an attitude about being 'early' to what was a new patient appointment! You know the kind of appointment they ask you to be 30 minutes early to? Yeah, they may have hubby's chart due to it being a part of our usual hospital's/convienent care clinic group. But there are usually questions that aren't asked by the general docs' that the neurologist needs to know. Things like "Have you been in a car wreck that could have caused brain trauma?" (Our PCP knew this, but he's not a part of this group. It was one of the reasons for a referral.) (Also strike one!)
    My hubby explained the issues he's having, which are the migraines and some difficulty walking due to coordination/muscle issues. NGL didn't ASK any questions about meds or accidents, so my hubby, using due dilligence, supplied them. You see, he'd been in a roll-over car wreck in 2010, and knew he'd bumped his head pretty hard against the roof of the car (in spite of the seatbelt!). The migraines slowly began to worsen from the usual one or two a year to one or two a week, then worsening to near daily. Stress from the job wasn't helping either.

    While the muscle-coordination was a concern, we were warned repeatedly that it was a possible side-effect of the topiramate. When both the PCP and the pharmasist warn you about a possible side-effect, you take it very seriously. It wasn't bad, just an issue with standing up suddenly and occasional leg not wanting to flex in time when walking. Enough to be noticable, but not enough to truly worry. Hubby was waiting to see if it would go away after the uptake period.

    For some reason, NGL told my hubby that he's an "old school neurologist"* (strike two). There was no way that wreck could have caused the migraines! It happened too long ago (two years prior to the visit) for it to be a concern at this juncture!

    So what did NGL fixate on? The coordination issue of course! He does the test with the needles and current, finds out that the nerves are JUST FINE thanks! Next was to order a CT of the back. Umm.. you determined there was nothing wrong with the nerve signal from the neck to the legs and yet... (My dad suffers from degenerative disk disease and the only reason he had either an MRI or a CT done was because he FAILED the nerve test!)

    Only thing NGL did was up the dosage of the topiramate.. that was the only thing he did concerning the migraines which were the more debilitating issue and you know, could be causing the other issue. Neuro-illnesses tend to be linked like that. The follow up after the back CT did NOT result in anything further in the migraine treatment, even with hubs reminding NGL that was the issue that brought him to the office in the first place! His attitude about the migraines was NOT GONNA LISTEN! (Strike THREEE)

    Of course the car wreck might not have a thing to do with the migraines. But you don't just brush off a real concern, especially since my hubby admits there is a period of time that he doesn't fully remember but he isn't sure if it's because he passed out or if shock ate it. Yes, he told NGL that, but NGL was too fixated on the coordination issue. He even dismissed the idea that the two could be linked...

    Turns out NGL also has some pretty poor grades in listening on most doctor websites and the migraine suffers have said he doesn't seem to consider migraines to be an "illness." Wish we'd known that before hubs went!

    A month after the last visit with NGL, the coordination issue cleared up. Six months later, the issue with the migraines still exist, but the topiramate is keeping it easy. He's seeing the PCP. Unfortunately, he's developed the shakes and some memory issues and that is a bit more concerning.

    I've gotten some wonderful referals from other migraine suffers, some worse than hubby about two neurologists in Little Rock that specialize in headaches. We're in the process of looking at the two and when the new year hits, we're going to take the trip to Little Rock to see one of them. Hour trip one way will be worth it, if it ends in doctors that listen and can at least try to help!
    If I make no sense, I apologize. I'm constantly interrupted by an actual toddler.

  • #2
    I wouldn't wait till the new year if shakes and memory loss are happening. What if he's having mini strokes or something else that is causing parts of the brain to get cut off or die?

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    • #3
      It's not.. I'm trying to figure out how to describe it. He is a very literate man, but right now, he spends time fumbling for words that he never had problems with before. Not actual memory loss, but more like what happens when you don't get enough sleep. Which could also be a cause for that, since we do have a 13 month old.

      Right now, it's hard to get an appointment with either of them. The PCP thinks it could be due to the topiramate, so we've got an appointment with him next week to find out. Likely it will result in a weaning from the topiramate and trying a new one.
      If I make no sense, I apologize. I'm constantly interrupted by an actual toddler.

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      • #4
        Ummm when my Mom has mini strokes that's exactly what she goes through.

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        • #5
          Word recall trouble is a HUGE sign of stroke, mini or otherwise. I would insist that this be taken more seriously by the doctors.

          And huge hugs for you. I know you've got to be exhausted and worried sick.
          At the conclusion of an Irish wedding, the priest said "Everybody please hug the person who has made your life worth living. The bartender was nearly crushed to death.

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          • #6
            Quoth Aethian View Post
            Ummm when my Mom has mini strokes that's exactly what she goes through.
            On the other hand, it really could be an entirely different neurological issue. I've never had a stroke, mini or otherwise, but this is also exactly what I went through for a good six months after a tick bite gave me a disease called erlichiosis. After 12 years, it's almost completely cleared up.

            It's also exactly what my younger sister goes through all.the.time, poor woman. She's never had a stroke, either. Hers is the result of two massive head injuries.
            Last edited by morgana; 10-31-2013, 03:21 PM. Reason: sister's issues

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            • #7
              Quoth morgana View Post
              On the other hand, it really could be an entirely different neurological issue. I've never had a stroke, mini or otherwise, but this is also exactly what I went through for a good six months after a tick bite gave me a disease called erlichiosis. After 12 years, it's almost completely cleared up.

              It's also exactly what my younger sister goes through all.the.time, poor woman. She's never had a stroke, either. Hers is the result of two massive head injuries.
              True enough. My mother just spent months suffering from horrendous headaches and hallucinations. Most of the doctors she saw blew it off, one was leaning towards atypical migraines, but the problem turned out to be mastoiditis.

              The point, however, is that it's never wise to take issues like this lightly. It could be something simple to treat, or it could be something potentially fatal like stroke. It's been going on long enough now that a more intense approach to diagnosis and treatment is called for.
              At the conclusion of an Irish wedding, the priest said "Everybody please hug the person who has made your life worth living. The bartender was nearly crushed to death.

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              • #8
                Quoth mathnerd View Post
                The point, however, is that it's never wise to take issues like this lightly. It could be something simple to treat, or it could be something potentially fatal like stroke. It's been going on long enough now that a more intense approach to diagnosis and treatment is called for.
                Especially as migraine increases risk for stroke, and can cause totally healthy people as young as 20 to suffer a stroke.
                Honestly.... the image of that in my head made me go "AWESOME!"..... and then I remembered I am terribly strange.-Red dazes

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                • #9
                  Yup, the hubs has an appointment Monday for the PCP, who takes us seriously. We'll see what he says first. Then I'll call the neurologist's office that we want to see (having spoken to a friend who is seeming them) and see how soon they can see him.

                  While I am worried, I've noticed a pattern to the word recall issues... it's there only when he's tired. Very tired. Like we've got a teething 13 month old and he refuses to NOT SHARE THE BURDEN WHILE GOING TO WORK THE NEXT DAY tired. And he says I'm doing the same thing. So does my oldest, after I called him by every pet name in house... >.<

                  Still gonna talk to the doc about it and make absolutely sure. Hopefully, the PCP will go ahead and order a CT of the head, like he did with my migraines after I'd had an odd one that was sudden, very, very bad and lingered for nearly a week.
                  If I make no sense, I apologize. I'm constantly interrupted by an actual toddler.

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                  • #10
                    My mother had similar signs with her brain cancer, so us trying to diagnose things over the internet is very dangerous. I'm glad hubs has another appointment on Monday and hopefully they can move things along very quickly!
                    "Bring me knitting!" (The Doctor - not the one you were expecting)

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                    • #11
                      The word you're looking for is "aphasia".
                      The High Priest is an Illusion!

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                      • #12
                        Quoth KatherineB View Post
                        My mother had similar signs with her brain cancer, so us trying to diagnose things over the internet is very dangerous. I'm glad hubs has another appointment on Monday and hopefully they can move things along very quickly!
                        Not trying to diagnose but giving what those symptoms meant in our lives.

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                        • #13
                          The PCP is fairly certain that the meds are the cause for both issues. He did go over all past visits and meds to make sure, including noting the head and neck scan showed there was nothing visible on it that could be wrong with the brain. It was done when the migraines started getting worse, so see if the trigger could have been then. Oooh, but the neck was a bit of a mess, he said the knotted muscles were bad enough to be visible on it Yeah, hub's job is that stressful, which ISN'T helping.

                          He did make a change to the hub's BP meds and is looking at a beta blocker, but given the schedule atm, he wants to hold off until we've seen another neuro. So, tomorrow I call the one we've gotten good reviews about and see when they can work him in.
                          If I make no sense, I apologize. I'm constantly interrupted by an actual toddler.

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                          • #14
                            Exhaustion can absolutely cause aphasia, as most any member of CS has probably experienced. Certain meds for neuro problems can have it as a side-effect (along with the tremors).

                            That being said, it's good that you are taking this seriously and pursuing it. Even it it's all from the meds, that doesn't mean you let it keep happening. Some side effects, such as dry mouth, can be irritating but dealt with. Others mean the med isn't right for you.
                            Don't wanna; not gonna.

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                            • #15
                              Took 23 doctors before anyone would take my migraines seriously. Finally have a PCP, dentist, and chiropractor all on my side.

                              I was in a car accident in 1987 and hit my head on something. Migraines started that same year.

                              I also have to watch diet, stress, salt intake, dehydration, pressure on my neck, etc so I don't trigger one.

                              Your husband needs a new neurologist. That first one is a quack. Can you take him to the ER and get a referral there?

                              I take Inderal for blood pressure and Elavil an antidepressant daily as migraine preventions. Without those I would not be able to hold down a job or function at all.
                              ''Sugar cane and coffee cups, copper, steel, and cattle. An annotated history the forest for the fire. Where we propagate confusion primitive and wild. Welcome to the occupation''

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