Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 In a message dated 12/27/02 9:22:09 AM, Ckelly@... writes: << Hey there Robin! Can I ask how much of the Topamax your taking? >> Hi Jan: So sorry I haven't responded sooner but I've been off the computer till now. I was taking three 25 mgs a day but new pain mgmt. doctor just increased. Last week he upped topamax to two 25mgs. three times a day and this week he upped it to three 25 mgs. three times a day. I think he may increase it more the next time I see him (next week). The only side effects I'm having is sleepiness and no appetite. I have heard of the pills coming in stronger doses but if you are having weird side effects you should call your doc ASAP!!! I see that you wrote this email days ago and I hope that you've got your side effects either under control or you've spoken to your doc or pharmacist by now. Let me know what's happening!!!!!!!!!! I promise to check my email sooner. I swear. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 In a message dated 1/2/03 2:41:38 PM, jekteachme@... writes: << Well, I didn't mean to whine but I am going a little nuts. Jan >> Jan: I'm so sorry to hear you've been having such a hard time. First, IF I " VE TOLD YOU ONCE I " VE TOLD YOU A MILLION TIMES DON " T EVER APOLOGIZE TO ME FOR WHINING LOL!! I MEAN IT!!!!!! Secondly, I, too, am unable to sit and have been for years!!!! In fact, about three years I designed a cushion (and started a business--it's a long story--and didn't work out) just for this reason. I can't sit for longer than five or ten minutes without excruciating back pain. For me, the pain is in my back and down my legs but mostly in my back. Oh, it still hurts when I think of how big that damn cushion would have been and how rich it would have made me lol. Of course, that's why I'm having surgery. I have no more disc at L4/L5 and went misdiagnosed for 9 friggen years (when it was torn/shredded). I saw specialist after specialist. And I live in Los Angeles. It's not like I live in some small town (and I mean no disrespect if you do). I went from one hot shot doc to another and had test after test. I still get mad when I think about it. I never heard of the muscle you mentioned. I'll have to look it up. The EMG is really not that bad. I had one ages ago. Only one part of it is uncomfortable. Don't worry about it. Honest. I can totally relate to how you are feeling though. The only comfortable position for me is lying on my side also and in the fetal position. As for my last email--sorry. I got confused. Unfortunately, for some reason everyone in the group seems to be cc:ing me for EVERY email response. I'm averaging 40-60 emails a day and in some cases in excess of 100+ and I'm having difficulty deciphering which ones are from whom and who's talking to me. I'm gonna have to post something. I'm getting emails even when people are talking about stuff that shouldn't even come to me. I mean I appreciate being included but at some point it's getting ridiculous, particularly when I have to open each one to read it to see if it's for me or not. Anyways....I'm sorry to complain to you about this but I'm not really sure how to handle this problem. Ok, I'm done whining now lol. As for the sitting problem, I've been living with it for years so I so know how you feel. Whenever I go out to lunch with any of my friends or family, by now they're all used to my spontaneously standing up after about 10 minutes, and I just sway. My Dad usually makes a joke by taking a (cloth) napkin and placing it over my arm (so I look like a waiter standing there). Surprisingly, even after all of these years, it's still good for a giggle. It's awful though (the pain). It sucks. I haven't been able to work or do much of anything. Hard to get through life when one can't sit. I know. Then I put together a couple of low pain (good) days and I go out and do stuff. Then I make the mistake of going out to lunch or worse....DINNER and then I'm flared up all over again. It sucks. Anyways...just know that you're not alone. Sorry to hear that the pyriformis injections didn't help much. I know that unless they hit the muscle sometimes it takes more than one injection. Don't give up. Hang in there. Know that you can whine and bitch to me anytime, ok? Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 In a message dated 1/2/03 2:41:38 PM, jekteachme@... writes: << I have burning in the rectum ( >> Jan: Ok, this one I don't have. sorry. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 >Hi Jan:>> Nope...think this was me asking But hey, I have slept since then! LOL >So sorry I haven't responded sooner but I've been off the computer till now. >I was taking three 25 mgs a day but new pain mgmt. doctor just increased. >Last week he upped topamax to two 25mgs. three times a day and this week he >upped it to three 25 mgs. three times a day. I think he may increase it more >the next time I see him (next week). The only side effects I'm having is >sleepiness and no appetite. I have heard of the pills coming in stronger >doses but if you are having weird side effects you should call your doc >ASAP!!! I see that you wrote this email days ago and I hope that you've got >your side effects either under control or you've spoken to your doc or >pharmacist by now. Let me know what's happening!!!!!!!!!! I promise to check >my email sooner. I swear. > >Robin>> LOL No need to worry dear!!! I am only at 100mg a day now...so I am going to email the Dr & let them know that things are going good so far.....and hopefully, he will start to increase mine as well. The next step up is 100 mg's tablets. Seems like the website says 400mg is the *norm*...ROFL whatever in the hell that might mean! LOLOL Thanks for checking in! Ask me about my new MSM lotion for aches/pains! http://www.scentsappeal.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 > I had colonoscomy done..everything okay in that area.>> Hey Jan! Glad that part is over with at least! I guess your pkg isn't there yet eh? Darned post office! LOL >I had an injection for the Pereformis Syndrome (nerve entrapment in a butt >muscle) and it helped a little with the sciatic pain but did nothing for >my sitting problem. My ortho say it isn't back related but I'm not sure >about that...in my print out at L4/5 says there is diffuse bulding and a >tear with a mild degree of lateral recess stenosis symmetrically. >Coincindentally, L4/5 is where the prudendal nerve comes out of and runs >down through the pelvis area effecting everything in that area (including >rectum, vagina, etc.). If it gets compressed..guess what..symptoms occur >like I describe. I just don't trust doctors. I go to the neurologist next >week for EMG test (yuck, heard their painful). I'm kinda diagnosing myself >from all the research I've done. If it is the prundendal nerve and it >isn't compressed at the spine...there is two other locations it can get >piinched..but it is a very tough nerve to get 'unpinched'. I just can't >believe I'm going through all this after finally coming through pretty >good from the cervical disc problem. >Well, I didn't mean to whine but I am going a little nuts. >Jan>> Hun...you are NOT whining!!!! You guys have GOT to stop that! HELLO..we are a SUPPORT group! LOL I have to tell you Jan that I am VERY impressed with your knowledge of your situation! Crap...just a little more & YOU could be a practicing Dr! Me thinks that you could do a better job than some of those out there now! I will be sending some good healing vibes your way for next week hun. Your bound to find someone who will listen to all of the stuff that you've got to say. {{{{HUGS}}}} Ask me about my new MSM lotion for aches/pains! http://www.scentsappeal.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 In a message dated 1/2/03 6:43:27 PM, Ckelly@... writes: << Nope...think this was me asking But hey, I have slept since then! LOL >> Ooops. Sorry. Glad you're feeling better though. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 In a message dated 1/2/03 4:57:42 PM, jekteachme@... writes: << How was it finally diagnosed for you? Was the first MRI not clear? >> Jan: I had many MRI's over the years (as well as every other test known to mankind) and it was missed on all. I also had a discogram in 1998 and the idiot who did that test screwed it up too don't ask me how. I finally saw a brilliant orthopedist in 2001 who took an xray (a flexing one) who correctly diagnosed me. He then had me take yet another MRI and then confirmed his diagnosis. I then had another discogram later on that year (now that's the worst and most painful test!!). Did I just read that you have to have an EMG vaginally??????? Ok, that's going to be uncomfortable, I'm not gonna lie to you. Remember this is coming from the girl who used to have pyriformis injections vaginally. Yuk. You poor thing. You really have been through the ringer. But maybe, just maybe diagostically, atleast the doctor will find something. When are you having this done? Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 In a message dated 1/2/03 4:57:42 PM, jekteachme@... writes: << Did you have back pain this whole time that it wasn't diagnosed? I can't believe that you went that long without something major like a torn/shredded disc not being seen....geez..unbelievable! You must of been relieved to finally found out what it is >> Yup, that's an understatement. I had a minor/experimental surgery called IDET during the summer of 2001. That's when they found out how bad my disc was really torn, but it's also when I was finally validated. There's a part of me that felt like I was going crazy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 In a message dated 1/2/03 4:57:42 PM, jekteachme@... writes: << how do you manage to use the computer >> I use a laptop. I lie on bed (on back with my knees bent) and use this thing made of foam. I lay the laptop ontop of it (across my belly). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 In a message dated 1/2/03 4:57:42 PM, jekteachme@... writes: << How do you eat...standing? Can you drive? Do you have to have someone take you everywhere? Were you working before all this happened? Are you on disability? >> I can sit for short periods. I can drive for short periods as well. I filed for disability (long story). I'm currently going through my savings. I used to work in advertising sales. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 In a message dated 1/2/03 4:57:42 PM, jekteachme@... writes: << I really do want to get back to work. Anyway..once again..thanks for being there. Jan >> Thanks for being there for me too. xoxoox Rob Quote Link to comment Share on other sites More sharing options...
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