Hmm… kidneys?

If it’s not one problem, it’s another… right folks? So I have the blood pressure business back to normal: today was 122/80.

However… since I woke up on Sunday, I’ve had achiness/dull pain in my back where my kidneys are. I took 2 Tylenol yesterday to see if it went away, but that didn’t seem to do anything.  My system is obviously in shock right now, with tapering off the Topamax, having just had a 9-day course of Prednisone, had a few days trial of the blood pressure med that made me go too low, still on Cymbalta and Provigil daily… I did read last night that some people have had kidney stones while on Topamax, but it would be pretty weird for that to happen to me now that I’m getting RID of the Topamax.

The pharmacist who was taking my blood pressure said that if the pain gets worse, definitely go to the ER. Certainly a good idea. I had such a crappy night of sleep last night and I think it’s because I just couldn’t get comfortable in bed with feeling the dull pain in those areas.  UGH.  I’m seeing my primary care doc on Thursday now, too.

“It’s raining, it’s pouring, Joanna has more stuff wrong with her…”

 

goodbye, blood pressure med, I hardly knew thee. but you suck.

Yup, it’s a big “adios” to that medication.  I had my blood pressure checked again today, and it was still low: 104/60. Eep.  “Let’s stop that bloody drug,” my doc said when he called me just a little bit ago.  I hadn’t even taken it yet today because I was waiting for him to call me back.  A big relief to go off of that junk, because clearly it wasn’t helping out the head at all. Hopefully I will be able to start feeling better and not feel like a limp and heavy doll! My head has been hurting in a slightly different way, but I’m thinking that it’s due to the med changes and whatnot. Oy.

P.S. trying to play around with Twitter… I can see it on the blogroll on the right side, but it’s supposed to have little updates, not just a link. Hmm…

 

little update. and nice spanish men in the living room.

I was asked about my blood pressure: on Tuesday, my pressure was a whopping 92/70. I’m pretty sure that it’s the lowest that I’ve been, at least when it’s been checked. The pharmacist (who, it turned out, graduated from her pharmacy school with one of my good friends, which was a nice connection) was hesitant to let me just leave without rechecking and rechecking again. Luckily, I was only driving home around the corner, literally.

I’m going back tomorrow to have my pressure checked again at noon. Yesterday afternoon was my 1st “cut in half” dose of the blood pressure medicine (my new doc called me back in record time, horray!), and I’m hoping that after I take it again today, things will even out. That means I’m at a 4mg dose!? My doc had wanted me at 16mg on Friday (after a week of 8mg), but we clearly are not doing that. My body is just so sensitive to medication and changes with medication, and my mom always gets so upset when I have problems with that because she blames herself since she also has medication sensitivities. It’s always nice when your mother gets upset about things that she can’t control and then you have to reassure her, when you are the one needing the reassuring. But I <3 her anyways.

I had a bad evening last night, feeling quite low… D and I are having our living room/kitchen done as I mentioned, so we had some last-minute things to move out of the way. Even just putting small things into bags and bringing them into the office or bedroom wiped me out, I couldn’t believe it. My head was bothering me more yesterday as well, but it didn’t feel too much like my typical NDPH pain, so it was probably associated with the low blood pressure. I woke up feeling decent, luckily. I’m just taking it easy and not going anywhere. I just have to go out for a short while tomorrow afternoon – for my blood pressure check with my pals at Walgreens (not a plug per se, but the one I have been going to has been super nice to me), and to go to one of those “buy in bulk” stores for something I need for the bridal shower I’m co-throwing. Once the shower is over, I’ll post a picture of what I made, in case I have eyes of anyone reading this that is involved in the wedding

P.S. 3 nice Spanish guys are reflooring the living room and kitchen. Only one is really speaking English. I haven’t used Spanish since ‘01. Oops. As long as the kitchen isn’t carpeted, I think we’re golden.

the residue in the sink, post-flood. Mmm. after carpet was taken off. dirt? what?

 

Cloudy, humid, with definite light-headedness.

Yup. So my new doc has me trying a blood pressure medication that has been used for headaches (i love that – such random meds are used to treat other random things… hey, at least I’m not being prescribed little blue pills that are meant for men only…). Of course, with my system being as sensitive as it is, and with my blood pressure already being on the lower end of normal, it has gone down even more. Monday afternoon was when it really started to hit me (after being on the stuff since Friday AM), and since then I’ve been kinda unproductive. I drove the 2 minutes over to Walgreens so that I could have them take my pressure and then I drove home, so that’s about all the driving I’ve done. I was SUPPOSED to go to my grad class this morning, but that clearly didn’t happen. I wasn’t able to get into the car for just about an hour and then get on the little train and then sit through 3 hrs of class… and then drive again after that.

I managed to do my laundry this morning, but whoa, was that a task! I could have won the award for “Slowest Laundry-Doer Ever”. The laundry room in the building is in the basement and we’re on the 2nd floor, but thank goodness for elevators. Still, my laundry bag was no heavier than normal, but it felt like 10 tons. I took it slow and hadn’t even taken any meds since I was waiting for my doc to call. Hey, when you need clean clothes, what are you gonna do. I also just wanted to get it done with, since the pile has been growing, and I didn’t want to wait til D got home and whatnot. We’re cutting the dosage in half, luckily, and still moving along my taper off of the Topamax.

Tomorrow’s highlight: New carpet for the living room and new kitchen floor. Ya know, since it was, um, flooded. [Sidebar: As embarassing as it probably was at the time, I ended up turning on the waterworks of my own in the management office on Monday and was welling up in tears when I was told that it could be yet another week to wait for the whole recarpeting/flooring business to take place for us. I so kindly reminded them that we are living in half of our apartment right now and can barely stay in the part that was flooded for more than a quick meal's time because of the smell and mold that is probably growing. "We made some calls and can have it all done on Thursday morning." Gee, how prompt. Seeing as how we were told it would be 2-3 days, and now it's been almost 2 WEEKS. end rant.]

 

A little break in a bad cycle of pain = happy me…

So, this past Thursday was the day that I met my new headache doc at the office I’ve been going to for about a year now… the guy I had been seeing there left for family reasons or something (the best part: he wasn’t even going to bring it up until we asked him how long his fellowship was lasting for, and only then did he decide to tell me that “oh yeah, this is probably the last time you will see me”. Oops.).

Anyhoo, this new guy was fantastic, spent just over 2 hours with me (and of course, mommy-dearest). I really needed someone there with me on this visit because of how badly I’ve been feeling and how foggy my mind is in general. I would have just gotten all mixed up with the train schedule to get there and possibly even slept through the stop, and of course, my mom remembered certain things that I failed to (even though we had made a list of things to bring up)… this would be my “Thank Heaven for Little Girls” break-out number, changed to be about mommies and their awesomeness, of course.

We are doing what I am calling a “medication overhaul” — finally saying goodbye to everyone’s “friend” Mr. Topamax once and for all. I couldn’t be more excited, I almost started planning a Bon Voyage party. I think that would happen when my memory and all that jazz returns. I’ll probably talk a bit about the meds once I’ve been on them for a little while (as not to jinx them? not sure). I actually even got some injections while I was at the office, Lidocane and something else that ends in ‘cane (not candycane, I checked on that one!). Back of the head, front of the head, numbed me right up and helped to really lower my headache level right then and there… pretty amazing. A much improved/ happier ride on the train (can we say 3.5-ish hours? eew.).

I was even able to enjoy a weekend at a friend’s lakehouse, which was about a 2 hour drive from where I live. I had been nervous that I would have to cancel, due to the long drive and just generally feeling like junk. I really did feel so much improvement from my visit to the new doc and from starting some new meds/ beginning “The Great Goodbye” to topamax. crossing my fingers that it continues….

hope everyone is well. joanna

This where i sat for the weekend at my friend’s lake house. we moved between here and the dock. and the grocery store about 20 minutes away to get food (and the farm to get fresh eggs!) :

 

Owww.

I just had the WORST SHARP PAINS that I have had in weeks. Literally.

Just 5 minutes ago, for about 3 minutes straight, I stood against the wall in the kitchen (just because that’s where I was when it hit) and grabbed my head and keeled over.

As fast as it came over me, it went away.  I’m exhausted from it, as if I am a battery that had power zapped from it.

I can’t go to bed yet, however… I still have some pain, and I can just feel that it will be too hard to fall asleep with it… I’ll just have to “wait it out” with the tv/computer and distract myself for a little while until the pain lessens and I can try to slip into bed and to sleep before the pain grows (I could watch tv in bed until I fall asleep, but my boyfriend is already goin to sleep – he has to wake up early for work).

This type of post is the type that i don’t normally expect to be able to post right after the fact…  I’m glad I’m able to share this experience, especially for those who aren’t familiar with NDPH.  I guess tonight’s “quick sharp pain” can be compared to a migraine, but I just didn’t have any of the “extras” that go along with it – no aura, no nausea, no sensitivities to anything, etc.

It just comes whenever.

This is why it can be so hard to make plans, to know when I can really drive a long distance, or how I’ll feel for a whole day walking around our favorite city. I have NO IDEA if I’m going to have a problem, very similar to my migraine friends.

And… yeah. It’s messing with my concentration right now. I think I better wrap this entry up.  Just wanted to share so others could get a feel (at least not literally) of what can happen 1+++ times during my day. Everyday.

 

Time to make the donuts, time to change the dosage…

I’m at about the 1-month mark for the lowering of the Topamax  (200-150mg/day).  At first, I didn’t really notice too much difference in the pain level – the main point of lowering the dose was to help with the memory issues that it causes.  I really haven’t noticed any improvements.  After a little while, however, my headache has become more apparent and now I’m taking rescue meds almost every day (as opposed to barely 1 time/week before).  The doc who called me back from my headache doc practice (who, by the way, I have never heard of before – but he was very nice, luckily) suggested that I move up to 175mg/day until I see my new doc (July 12)… if that doesn’t work though, I will have to just go back to 200 for the time being.

Never a dull moment…

P.S.  I’ve been coming across more and more headache blog friends, and even though it’s unfortunate that we are in this situation, it’s been so helpful to know that there are others out there who are doing their best to share what they can.  So, thank you to all my new friends

 

Back to School, Back to School (soon…eek!)

For about 5 weeks, starting the 1st week of July, I am going to re-enter the classroom. I will be a student for the first time since May 2006 (I took a “distance learning” course with some of my coworkers this year but it was all on our own, no teacher, no class). I’m still in the midst of taking my teacher licensure tests, and so once those are passed, I will be fully licensed to teach. I would prefer, however, to get my Masters before teaching, and with all the headache junk, I have had trouble passing the tests (which has in turn delayed my graduate school time). So, I’m going to be taking “Reading and Writing Across the Curriculum” for non-degree Graduate credit at a college in my area – and it’s a school that I wouldn’t mind going to for my Masters. The class is even included within their MAT (Masters of Teaching) program, as it typically is at a lot of schools.

I’m just hoping that it’s not too intense, work-wise. I know that my doctors always talk about the summers as a good time to try new things with my medications, but I essentially lost most of my summer last year because of that. I spent the bulk of the summer on the couch in front of the TV, crying to my mother. I was even at my beach house at that time, and I barely saw the beach. Pathetic. I basically don’t want that again, even though I obviously want to find things that will help me feel better… it’s something that us “headache people” seem to fight with daily. Soo frustrating.

Luckily, the course is 2 days per week, and it’s only from 10-1. I tend to feel better in the earlier part of the day, so hopefully that will help. I’m just hoping I can get all the work done in time!

I’m starting to feel a buildup of pain, so I should probably sign off. Feels like a good ole night tonight… ugh.

 

What a week. Decreasing meds = not fun…

So, I have been wanting to update since at least Wednesday, but have been having a tough week, pain-wise. Last weekend, I decreased my Topamax by 50mg (per doctor’s orders) because we had discussed my frustration and difficulties with my memory and whatnot. We’re trying to see if a decrease in the Topamax will still help me out (as much/little as it is) with my headache, and also see if there’s a decrease in my memory issues. I take Top. at night, but for the past bunch of days have been needing to take some of my rescue meds after work or in the early evening – seems as if the decrease is already showing its face…

Stress at work doesn’t help my pain, but doesn’t bring it on either (luckily!)… the middle school is winding down, and next week is our final week – we only go through a half day on Thursday. I will miss seeing the kids everyday, but I certainly need a break (especially now with this medication change business)!

On Tuesday, specifically, I ended up barely getting through making/eating dinner for the two of us and then I collapsed on the couch… and slept from 7-9 unintentionally. I had also taken a rescue med. I woke up at 9 to the sound of my cell phone, but couldn’t recognize that the sound was coming from the phone… my boyfriend kept saying, “Joanna… your phone… hello?! Are you gonna get your phone?” I really woke up so out of it and still ended up going to bed 45 mins later with almost that same amount of pain. It was upsetting because I haven’t had to really “shut down” and waste an evening and still be in pain when I woke up in soo long… ugh.

Nothing too big planned for the weekend, so hopefully some relaxing time…

Hope anyone out there in my boat is having a better end to their week!