Tuesday, June 2, 2009

Migraine MRI update

Ok, I don't know if I should worry or not. My doctor's nurse called me yesterday and said they had the results of my MRI. Doctor said there were some small abnormalities (I always knew my brain wasn't "normal") and that she doesn't think that's causing the headaches. But, she wants me to see a neurologist (there's one that comes up from the Twin Cities, once a month, I think). Thing is, I can't get in to see her until July 23rd. So I have almost 2 months to sit here and obsess about what's wrong with me and if it's nothing to worry about, like the nurse said, then why do I have to see a neurologist? I think I must be a mushroom because all she does is keep me in the dark and feed me bullshit.
I'm beginning to think my doctor isn't as good as I first thought she was. This migraine thing isn't the only reason. When I went to get the 3rd set of shots for my knees, the ortho doc asked me how I was doing and when I told him pretty good, other than a migraine, he wanted to know what I was being given for them. When I told him "Nothing, we're waiting on the results of the MRI I had done," he asked if I wanted him to prescribe something for me. Told him no, I would wait and see what the MRI showed and see what my PCP wanted to do from there (which seems like nothing, as fucking usual, send me to another doctor and let that one deal with it, just like she did with my arthritic knees). She won't give me any pain meds for my knees, nothing for my headaches (take Excedrin Migraine, that works, she says), physical therapy for my back (who haven't yet called to set up any appointments). Yeah, she's doing a really good job of taking care of my health (lose weight and everything will be fine, she says, been there done that didn't work I say, try again, she says). She wants to put me on blood pressure meds, in spite of the fact that, at home, my blood pressure is fine, it's only high when her nurse takes it and pumps the cuff up so high I'm in serious pain from it and then I get pissed off because she won't listen to me (but stress doesn't raise your blood pressure, oh no it doesn't, according to her).
At least now that I've seen the ortho doctor for my knees, I don't need any more referrals from my doctor to be able to see him again. If I have any problems, I can just call and make an appointment directly with him. He said these rooster comb shots take about 6 weeks after the last one to see the full effect of them, so hopefully, by the end of this month, first part of July, I should be seeing some improvement (I hope so, I want to go back to riding my recumbent exercise bike).


  1. Hey girl - I read you through the Fat-o-sphere feed off of Kate Harding's site... and I thought i'd offer some commiseration... dunno how helpful me yammering on is, but at least it's a been-there-too voice.

    I am currently on blood pressure medication. I have weighed my current weight for YEARS now, been "in shape" and "out of shape" and the weight doesn't vary much outside of 5lbs either way.

    anyway, this spring i was diagnosed with high blood pressure. My doctor tells me it's because of my weight, that i'd reached the "tipping point" of being obese. Never mind that my ENTIRE life i've had dead-on 120/80 BP. Never mind that I started experiencing headaches, nausea & dissiness at about the same time i started experiencing really, REALLY awful family stress.

    oh, no. must be the weight.

    anyway, screw whomever says that BP isn't related to stress. whether my situation is truly related to my weight or not, I still believe that environmental stress plays a huge part in my feelings of well-being.

    I'll be thinking good thoughts for you to be back on the recumbent bike. They are AWESOME :)

  2. Big D - Every time I read something from someone who's had a similar experience, I know I'm not alone with these problems. It does help, makes me sure that I'm not deluded/stupid/non-compliant or whatever, that this shit is real and doctors can be assholes. It also makes me more determined to keep fighting to find out what is really wrong and get it treated properly instead of being told all the time that everything is caused by my being fat (hell, I've had migraines for as long as I can remember, and back 40 years ago, I wasn't fat, so it's not the fat or high blood pressure causing them).

  3. Another lurker from Shapely prose here.

    My mother and sister are nurses, so I can tell you unequivocally that it is well known that there are folks who have blood pressure spikes at the doctor's office as a result of anxiety.

    My mom always has to take my dad's BP at home because he freaks out at the doctor's office.

    Your doctor appears to be a bit of an ass. Sorry.

  4. mybadhairlife - yeah, I think she is a bit of an ass, but as long as I can take my BP at home and show her the readings as proof that it isn't always high, she'll leave me alone (and my wrist BP cuff tracks those readings by date and time).

  5. This is called "White Coat Hypertension," and is one of the reasons I switched OBs in the middle of my first pregnancy. I wasn't about to risk White Coat Pre-eclampsia.

  6. Hi Mariellen, I've read some of your posts on Big Liberty's site and I wanted to say "hi". After reading your post above, it sounds to me like you might have what's known as Cushing's Disease. If this is old news to you or if your docs have already ruled this out, my apologies. However, even if it has been ruled out, it usually stills means you do have it as this disease is the MOST difficult one I've ever seen to get a diagnosis on. Anyway, some of your above symptoms are very Cushing's-like, plus the fact that something was found on you MRI makes me even more suspicious. In Cushing's, it's a non-cancerous pituitary tumor that causes the illness, so when we "Cushie's" have our MRI's, we're actually hoping the docs find something. Many, many people who have been diagnosed with PCOS, high blood pressure, diabetes, depression and a host of other illnesses actually have Cushing's, it's true! If you'd like more info on what this illness is, what the treatment is, etc., please let me know, I'd love to help in any way I can. Anyway, don't stress and don't freak and just stay positive. I know that's easy to say and hard to do, but please try!

  7. Sorry you're going through this. It sucks when doctors are like this.

    And no, Excedrin Migraine doesn't always work. But thanks a pantload, Doc.

  8. spoonfork38 -yeah, sometimes I have "whitecoat hypertension", sometimes I don't, all depends on what's been going on in my life at the time and whether I think the doctor is going to give me hell about something (yeah, add more stress to my life, that's just what I need).

    ndlesdream - Hmm, makes me wonder about the depression I've had for years, but I don't have diabetes (yet, but it runs in the family, both sides), the high blood pressure is usually from stress or an ill-fitting BP cuff, and no one has ever suggested that I might have PCOS (in spite of irregular periods, heavy flow, painful cramps, etc - probably because I got pregnant so easily, they never even considered it, and then I started menopause at the ripe old age of 48). I know that one nurse practitioner I had years ago thought there was something wrong because every time I saw her and she asked me how I was, I told her I was tired (and I was tired all the time, I was falling asleep at work, and if you've ever been in a concrete block room with 50 other women doing wire-wrap, you'll know how hard that is to do, but I managed). But she never sent me for any tests to diagnose why I was tired all the time. She's also the one who told me that, at 350 lbs, no surgeon would do knee replacements when I needed them and recommended the VBG that failed so spectacularly (she's also the one who prescribed phen-fen for me, 6 months before it was taken off the market because of the heart/lung problems it caused).
    I do have a friend who has a tumor on his pituitary and it kept him from going through puberty, and he has a really hard time losing weight, but I don't know if that's Cushing's or not. He was prescribed meds to take to shrink the tumor, but ever since his mom passed away, he doesn't do any of the stuff he should to take care of it.
    I guess I'll just have to wait and see what happens. At least if it is Cushing's, there's something that can be done to treat it, and I'll have a reason for the way I've been feeling all these years (and to think it took bitching about migraine headaches to figure it out, if that's the case). Guess I'll do some researching.

  9. perfectlycursedlife - I told her that if 1600 mg of ibuprofen didn't take care of the headache, Excedrin Migraine probably wouldn't help (and I get plenty of caffeine in the diet Dr Pepper I drink all day long, along with the iced tea I also drink). She said to try 800 mg of ibuprofen and 500 mg of tylenol together (been there done that, didn't work). And that shit's real good on your liver and kidneys, isn't it, in those amounts............NOT. But doctors see fat and every thought of what the problem could really be caused by goes right out the window in favor of the easy diagnosis of "caused by being DEATHFAT".

  10. Hi! Wandered here from the fatosphere feed.

    I don't know if this will help you at all, but I used to get migraines a few times a week until I started seeing a chiroprator on a regular basis.

  11. Hi again Mariellen, your friend doesn't sound like a Cushie but Cushing's is only one of the many diseases of the pituitary. For example, gigantism, or acromegaly, is another pituitary disease. It also involves a non-cancerous pituitary tumor but it's symptoms are completely different. It causes uncontrolled growth in the body (hence the gigant part of gigantism), those afflicted just keep growing taller and taller even after reaching what should be the cutoff point from puberty. Most people aren't aware of how many disorders and diseases of the pituitary exist. And just because you haven't been diagnosed with any (or most) of the diseases I named in my other post, doesn't mean that you still aren't a Cushing's candidate. One of the things that makes diagnosing Cushing's so difficult, as opposed to many other pituitary disorders, is that the symptoms and even physical effects of the disease can vary enormously from person to person. So in your research of the disease, keep an open mind when reading up on what to look for if you think you have Cushing's. You many not have many of the "classic" symptoms or physical effects, but if you read up on individual blogs as to what each person's dealings with the disease has been like, you may find that you indeed are a Cushie. Hope that helps clear up anything that may not have been clear from my earlier post :)

  12. I'm sending good vibes your way, Vesta! I hope your suffering peters out soon!!
    My mother also suffers from horrible migraines to the point that her doc gave her some medicine to take via syringe whenever she even thought she MIGHT be getting one. She had similar experiences which MRI... where her doc found all sorts of brain abnormalities that scared the shit out of her initially. Apparently the MRI showed that my mother had had several mini-strokes in her life... maybe even before she was born... plus, she had potential anuerysms in her brain that she could live a full long life with never having a problem with them... or not.
    Sometimes I don't feel docs even have the maturity to deal with the information they gather from such tests... they just scare the crap out of people when some of these abonormalities aren't really dangerous... grrr.
    I know your situation is a different one than my mother's though. I'm just throwing out there what I know in case it could be helpful in some small way.
    I'm wishing you all the best and my heart goes o to you!!!

  13. luv - Thanks, I'm not sure what's going on with the migraines, and I guess I'm just going to have suffer with any I have until I can see the neurologist the end of July (yeah, what the hell, I've suffered with them for 40 years now, what's another couple of months, right?).
    There's no way of knowing what those abnormalities are until I see the neurologist, so I guess I'm not going to worry about it till then (like it would do any good to worry, anyway).

  14. I have had migraines all my life and I never had anyone prescribe anything until I found a wonderful dr a couple years ago. He prescribed me Maxalt. 20 minutes after taking it i need to nap...but it kicks that monkey right out of my head. My migraines are hormonal fyi...not caffeine caused...you wouldn't believe how many dr's tried to tell me caffeine avoidance would stop them...

  15. Wicked Ms. Godshall - My doctor said the caffeine in Excedrin Migraine would help get rid of the headaches. But when I take 800 mg of ibuprofen and 500 mg of tylenol together and wash it down with a can of diet Dr Pepper (which has plenty of caffeine) and that doesn't even touch the headache, I don't think EM is going to be much help. My doctor doesn't believe in prescribing any kind of pain meds other than ibuprofen and tylenol, and when you've taken them for as many years as I have, they're next to useless (well, at least she won't prescribe it for me, I don't have a clue if she's willing to prescribe other pain relievers for other patients). I think she's of the opinion that if I would just quit eating and get off my fat ass and move, I'd lose that 200 extra pounds I'm carrying around and then I'd never have another health problem in my life. Never mind that when you're in severe pain all the time, it's rather hard to do much exercise (and she's firmly of the opinion that calories in/out works for weight loss and as long as you eat less calories than you burn forever, you'll be thin forever........yeah, right).

  16. Yes I love the "If you lose the weight you won't have any problems....ever" mentality most Dr.'s have. My favorite is when you try out a new dr and they say "you know....you are really overweight and should try to lose it"...REALLY?! I never noticed my suprisingly large belly before! WHEN did that appear?!?!?!

    I have no idea why so many dr's let me suffer so long with migraines. I really don't. Maxalt is actually not a pain med. Migraines are caused by your blood vessels swelling around your brain and Maxalt reduces the swelling as well as a couple of other things. I just noticed your meeting with the neurologist is within a couple days now. Good luck!!!


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