How can I explain this. For the most part I've been pretty positive. I've kept my sense of humor, work full-time, just deal with everything alone (more about this later), and pretty much ignore Mr. PD who manages to give me a poke once in awhile.

Right now, well it's a different story. I essentially want to tell everyone I've ever spoken to, worked with, or live with now to go f--- themselves. Maybe I've just pushed myself too hard, like ignoring the inevitable, fitting on that fake smile, etc. What happened is Monday I had the symptoms of a stroke. I woke up with a blaring headache out of nowhere and called my neuro. Recently I was started on midodrine which was to raise my blood pressure. I have quite low blood pressure lying down, and when standing I have passed out. My doctor put me on two small doses, which I took faithfully until Monday. While I was having those symptoms, I took my BP. It had gone from my norm of 100/60 /90/43 to 138/89 150/90. I was told this isn't terribly high, but for me this was high, and I had a truly rotten headache. I put in the call, as I said, and waited. I even went to work because my house sucks when it comes to resting. For some reason people here don't give a sh--- when I try to rest. (I basically don't exist - more on this one later). By the time the covering neuro called, my headache went away, but she had me come in anyway the next day for CT scan and a visit. The attending LPN, who knows me pretty well, had a scared look on her face as she checked my signs. Stiff left hand (even when on), dialated pupil, numbness on face, and cold hand, slow left leg. The conclusion from the neuro, who consulted with her, was I had a mild stroke, and to follow-up if nothing improves. Okay. Not much I could do. The CT scan showed nothing abnormal, so it's a good thing. They thought it could have been a TIA, and it was a good thing that I stopped the Midodrine. I actually did that first before calling the office.

Anyway, the rest of the week sucked. I had to prep for a colonoscopy. I know this takes a lot out of a normal person, well it took even more out of me. The test proved I'm clean as whistle, and I went home to sleep, which I did. I was also quite stiff, and my left side was still tight, but I know I can work that out.

Well Friday morning, at the bloody but-crack of dawn, before the stars completely disapear, I woke up with a blasted headache like someone hit me with a brick. There was a bright flash of light, and then pain in my head. I called the office again, after trying to sleep off the headache, which only got worse the more I tried. They told me to go to the ER, which I actually got a ride to in a different city, because the one located 3/4's of a mile from my house is dangerous. I wouldn't even bring a dead animal there! (it's rated 1/2 star!). The bigger, not so much better, hospital ER saw me, and felt I was best going to see my doctors at the Lahey Clinic. I got a recluntant ride down there (I'll explain later) from my dad. I got to Lahey, ate a disgusting grill cheese sandwich with the sweetest tasting ice tea I ever had. I saw the same people I saw before plus a couple more neuros. One of them thought I actually had glycoma because my left eye hurt. It felt as though something was going to push it out of my head! No glycoma, which runs in my family, and definitely no close angle, which I was checked for. The attending neuro, a stroke specialist, wanted me to stay over, and i had MRI The MRI scan showed nothing, and the evening neuro, also on the same team, sent me for another CT scan. This also showed nothing. I was in miserable pain, ready to throw up, and very stiff since my meds wore off. They put me back on my meds, gave me something for pain, which didn't even feather dust it away. Another two neuros came to see me on Saturday, said I possibly had a migraine or worse an aneurysm which they were afraid of, and sent me for an CT-A (one with dye) to look at my arteries. They said there were things, there but not to worry about them, and their conclusion was a migraine. I was quite upset at this point. It's not that I wanted something worse, but they're telling me I had nothing more than a lousy rotten headache, which I knew in the first place. They were shocked when I asked them this. I have never, ever, had a headache like this one. The understood how I felt and reassured me everything was fine.

Well after taking the so-called migraine meds, nothing could stop the bloody pain. They then gave me Vicodan. 6 vicodan later, and the pain subsided to a dull ache, which I can tolerate somewhat. I got over my amuzed frustration, and chock this up as an experience.

Now the doctors were kind enough to give me the PD meds, which are in my records. However they overdid it. I take a total of 6 Sinemet 25/100 pd, plus 1 CR at night, along with 3 Amantadine, 1 Azilect, and 3 Lodosyn. They kept giving me Sinement every 3 hours to make up for the lost day. I told them it was too much, so now I'm smacking my lips like a junky and writhing around. I'm not stiff, but can't sit still either!

So anyway at this point, I'm ready for the loony bin, perhaps run away and screw everyone. I can't deal anymore with this s----!

This is only part of the story. I'll continue in another thread...This is the part that really sucks...

John,

We all have our breaking points and it is not surprising you're losing it given all this. What is it with doctors downplaying our symptoms in first place? I have had two really good doctors who listen; one gets really peeved by other docs questioning us - her response is "why would a patient make up symptoms?"

Why indeed would you fake having a blinding headache? I am beginning to think we need to start getting sarcastic...tell them because I really enjoy visiting the ER; the fluorescent lights really do wonders for my "migraine". Please, John, one thing I have learned in living with this is that yes you can be positive but this does not mean you suck it up and take whatever is being offered if you don't feel comfortable with what a doctor is telling you.

I just looked up that drug to see if there were serious side effects and two instances of Hemorrhagic Stroke have been reported to the FDA. Further, your headache description rather mirrors this as it is reported as "like a bolt of lightening or thunderclap to the head". Stiff neck is part of it too. I don't mean to be alarmist; it could very well be a migraine but look out for your self and follow up. I think this goes way beyond being stoic and sucking it up; a stroke no matter how transient or ischemic is a serious thing. With PD, the last thing we want is any (more) brain trauma. I am most certain that a fall I took during an ice storm (landing on back of my head) hastened the onset of PD symptoms; prior to this I was atypical both ET and PD.

Hang in there!

Laura

I want to thank you for your support. I am definitely going to follow-up on this. I am still concerned, although the headache is now at a 3 on the pain scale. The eyeball has gone back into place and I actually woke up hungry. The yogurt I ate actually had flavor other than sour. This is the other thing, which everyone thinks is a joke. All food tasted weird. Sour things were extra sour, sweet was beyond nauseatingly sweet, etc. Other than that, there was no flavor at all. The thing is I really do like to eat, and now I've gone about 3 days with little food. Although today I'm aching for some donuts!

I really do, like you wonder why the doctors treat us like we "like" the attention. Yeah right, I love being stabbed, irradiated, poked and jabbed, kept awake by people checking me, and oh my headache is "all in my head". Perhaps some day, one of these doctors will be on the other side, and let them feel what it's like. I wouldn't want to be one of them!

I could go on and keep venting, but you said it all. The symptoms that came on got me scared and that's why I did what I did. My grandfather had a stroke, and my great grandfather had one (my grandfather's father-in-law). I do not want to become a victim of something that could be taken care of. The meds were given to me with good cause, and I don't fault my neurologist. She warned me of the possibility of this happening, and I kept my eyes open for anything weird. I'm good that way, and I acted accordingly, the way I look at it.

We'll see what happens next. Perhaps I give in and go on disability. This is probably out of the question because in Mass. the only people that get it are obese or politicians who know somone one at the top!

John

Just wanted to say hope you are by now feeling a little better. IT does sound very much like you have had some severe side effects. Blood pressure rising high like that isn't what you are used to, you work on a low setting. It does sound like a possible TIA, but I wonder if there was a bad reaction with your regular meds too. Take care of yourself and go easy too. I had a similar episode way before I was diagnosed with PD. Never did get to the bottom of it, but remember being absolutely incensed when I was told I probably had a panic attack. It was like putting the horse behind the cart....... never helps when people do that to you...... put down your experience. You describe the funny tasting sensation...... that sounds drug related. Hope you appetite and your normal self come back quick. Keep us posted on your progress.

Lindy

Just try to put yourSELF first. Be good to yourself ahead of others for a while. It might help.

Hi Lindy,

I'm doing much better, thank you. I've been sleeping a lot and taking a good week off from work. They actually are hiring the guy I work with and also bringing in a contractor. It took this scare to do this!

The headache is pretty much gone now too, probably at a 1 or 2 on the smiley face scale. I plan on following up on this and will not let the doctors get the better of me. I don't like being humored and told "it's all in my head", which it is, lol, but not in the way they mean. My face is still numb on both sides and I drool badly at night. I have to blot my face all night with a paper towel or napkin because it gets chapped by morning. I've never drooled like this before!

I wouldn't doubt if the medication in general got to me. My schedule has been off and I've been trying to keep that adjusted. The funny thing is now without the stress from work, everything works the way it should. Perhaps that was part of the problem as well.

John

John, don't feel like a migraine is something minor. They are horrible and like most ailments, can throw PD symptoms into a spin! I met my current neurologist (who is great) when I went to the hospital's E/R with a migraine. In addition to having the pain of the migraine, I was having a dyskinetic storm (my term for it) - nonstop and wildly active dyskinetic movements had me writhing all over the place. Both he and the nursing staff treated it like a major issue - which it was.

Hopefully, migraine medicine will work for you should you have another migraine in the future. It works best if you take it at the first sign of a headache, long before it gets to the point that you know for sure it's a migraine not just a normal headache. That was a treatment rule that I had trouble following until I suffered through a couple of migraines!

Donna