mkoven Posted January 9, 2008 Report Share Posted January 9, 2008 I just came back from Chicago to see a headache specialist at the diamond headache clinic. I usually go into such things very nervous, as I've had so many bad experiences, and their intake form asked a lot of questions about my psyche. I was very fearful of the hysterical female diagnosis.Well, let me rave. I felt listened to, taken seriously, felt like different issues were connected, and like I have a responsive , human doctor on my side. Even if the first meds we try aren't right, (unlike my previous neuro who fired me), I think she will keep working with me. She said she only fires rude patients, not patients who are hard to treat through no fault of their own.She diagnosed me with vertebral-basilar migraines-- connecting my weird neurological symptoms (intermittent clumsiness, one-sided transient weakness, recurrent vertigo (worse at period). Given that I have hyperintensities on my brain mri, that could be from these, she really thinks they need to be prevented. She thinks my neuro symptoms are actually my version of an aura. Triptans and birth control pills are a bad idea. She wants to try me on a calcium-channel blocker (nimotap), starting at minuscule doses as a preventive, and toradol, as an acute. And she thinks I need to be on aspirin or plavix, just to be safe.She also confirmed what people on this list know, but that my local docs don't seem to, that ncs/pots and migraines "live togehter."I was so happy to have this meeting go well, that I actually wanted to cry for relief and joy at the end of the appointment. I get the sense that she is committed to getting me better. And the fact that all she does is headaches means she can think outside of the box more easily than some.I've had these weird neuro symptoms intermittently for 5 years. I've been called crazy. I've been told I have benign positional vertigo-- (she was surprised that noone made the link, when I only get vertigo on the first day of my period). I've been sent for psychotherapy to get over whatever issues were making me imagine these episodes, including from some very reputable clinics (that will go unnamed)-- because by the time I'd see the doctor, the weakness had resolved. I've been told I was having TIA's. I was told in May 06 these were maybe migraine related, but then was dumped by my local doc when I reacted poorly to the first two drugs he prescribed.It's so wonderful to feel validated. Of course the next step is to see if these specific treatments help. But it is nice to see her be proactive and say that it is not acceptable to leave me in a state where I keep having these weird neurological episodes, that are probably not good for my brain in the long run.In the short run, they are super creepy. Her approach alone gets her big points. i just wish I'd gotten here several years ago. Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted January 9, 2008 Report Share Posted January 9, 2008 Yay for you!!!!!!!I am so happy you are getting answers and some validation. That has to feel wonderful!!!Angela Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 9, 2008 Report Share Posted January 9, 2008 Hi,I am really happy for you that you finally found a specially that can validate your headache and that will help you find a proper treatment.It's also encouraging for all of us that there are still some good doctors around.Thanks for the uplifting experience. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted January 9, 2008 Report Share Posted January 9, 2008 Great news! Hope the meds work well for you! morgan Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted January 9, 2008 Report Share Posted January 9, 2008 great to hear you had a nice visit. hope it continues.Always good to hear of a good doctor. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 9, 2008 Report Share Posted January 9, 2008 Isn't that a nice thing to have happen! I'm so glad for you. Nina Quote Link to comment Share on other sites More sharing options...
sally Posted January 9, 2008 Report Share Posted January 9, 2008 Its always great to get real answers. I'm happy for you and best wishes. Quote Link to comment Share on other sites More sharing options...
flop Posted January 9, 2008 Report Share Posted January 9, 2008 Congrats on finding what sounds like a gem of a doctor. There are still doctors about that have good bedside manner and listening skills, and are prepared to work to find out the best way of helping their patients. These doctors are often hard to find and usually very popular but it is worth searching for them.I'm so glad that you have a doctor willing to work with you to find a solution to those scary sounding episodes.Take care,Flop Quote Link to comment Share on other sites More sharing options...
pat57 Posted January 9, 2008 Report Share Posted January 9, 2008 hooray!Did she offer a prognosis? Quote Link to comment Share on other sites More sharing options...
doctorguest Posted January 9, 2008 Report Share Posted January 9, 2008 Hi Michele,Glad the appointment went well and that the doctor was competent! Good luck with your treatment plan. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 9, 2008 Report Share Posted January 9, 2008 Wow, rave reviews!Keep that doctor on the golden list!Let's hope this is only the beginning of many better days ahead.best regards,tearose Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 10, 2008 Report Share Posted January 10, 2008 Hi!I am glad you had such a positive experience, and it sounds like you learned a lot. I also learned some from what you said, I tend to wonder more of what kind of migraines I have and if they are being treated right? Like you said beta blockers and triptans can be bad dependent on the type of migraine. There can be risk of stroke etc. I guess if I continue to have a flair up of migraines I may need to see someone for them again. Thanks for sharing! Quote Link to comment Share on other sites More sharing options...
mkoven Posted January 10, 2008 Author Report Share Posted January 10, 2008 Thanks you guys for being and having been so supportive! I'm about to take my first dose of nimotop-- the calcium channel blocker. Anyone else take it or other calcium channel blockers? The doc thought that there were relatively few side effects with this one, though a few have lowered bp. So that may be the thing I look out for. She wants me on 30 mgs a day for a week, then up to 30 2x a day for a week, then 30 3x a day. So a gradual buildup.Beta-blockers would have been an option as a preventive, if it weren't for my really bad allergic reactions. I'm touching base with my allergist to confirm that those are indeed off the table.I need to ask about the acute med she gave me, toradol, when I'm primarily having neuro symptoms without much pain. Yesterday I had strange visual stuff and dizziness but the pain was minimal. I don't know if the toradol will do much for that, and I'd prefer not to take it if I don't have to. My new neuro symptom is the sense that something is fading from vision on one side-- I still see brightness, but I can't quite get my eye to process it, and then my eye feels really cold on that side. It feels a little like I'm losing consciousness/about to faint but only half of me???I really hope the nimotop stops all that. Quote Link to comment Share on other sites More sharing options...
Maxine Posted January 10, 2008 Report Share Posted January 10, 2008 Wow-----good to see someone look outside the box!I love it when that happens---- Good luck to a future without headaches, or at least a lot less severe headaches--- Maxine :0) Quote Link to comment Share on other sites More sharing options...
mkoven Posted January 11, 2008 Author Report Share Posted January 11, 2008 So I took the nimotop this morning. A little flushing and my hr was about ten beats more per minute than usual-- 80s and 90s. but I don't usually get bad tachy, more bp drops. and my bp was about the same.But, unfortunately, about three hours after the dose, I got a huge wave of neuro symptoms-- stuff receding from vision in one eye, dizzy, nautious, feeling like half my face was not quite right. I wonder if a vasospasm kicked in as the drug was wearing off, as it's short-acting? i had a pilates class, and decided to go. I think that helped, actually, get the vessels to renormalize. but all day long i've gotten these brief waves of hard to focus in one eye, the eye itself feels cold (?!), dizzy, nautious, and a little head throbbing. but each time it's been shortlived.I called the pa at the doc's office and she said to continue the drug. symptoms are probably my own weirdness and we hope the drug will eventually control it. Call back monday. so now we're at the part where I like the doctor, but it will take a while to figure out how to control the problem. No magic, immediate bullets.i wanted to confirm that there is no way to abort the neuro symptoms. indeed, the toradol is for pain, not for the other strangeness. and right now the pain is trivial compared to the neuro weirdness. so no, there is no way to eliminate the neuro symptoms as one would with pain. only prevention. I'm actually worried as classes start next week and I need to have my act together to teach. I'm particularly worried about this happening while I teach and worried about the visual stuff with all the reading and computer work involved. One day at a time, I guess. BTW the visual stuff is a new symptom for me. Like my eye is open and sees color and brightness but can't focus and it feels like that eye is checking out. She said it goes along with these migraines, but it's creepy. how annoying that force of will isn't enough. Quote Link to comment Share on other sites More sharing options...
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