persephone Posted October 25, 2005 Report Share Posted October 25, 2005 Ok today was JUST THE WORST guys I made it to my ten o'clock after about 4 hours of sleep. It was ok, but my lovely tutor asked me afterwards how I was--and I'd already begun to feel a bit wobbly. I showed her the traces of the flatlining bp and we walked outside, but my legs just got worse and worse until I was almost completely unable to walk- my legs were sort of bowing In the end she took my arm again and tried to start helping me walk back to the flat after I'd had to sit down for about ten minutes. As we were walking along I just felt worse and worse and there was nothing I could do-I passed out right there on the pavement. She was very good, and didn't let anyone get an ambulance because I'd asked her not to do that if anything did happen. She was brilliant.BUT then later on when I had a class later that day the same thing happened AGAIN and I ended up squatting on the pavement like an elf. It's like my legs couldn't do anything to keep me up- and I really was walking like an utter spastic. And the shaking was so bad all down my right sie it was like I was going to have a fit!!! Anyone else ever get this? Should I stop taking it? My GP told me to ask the Cardiologist what to do, so he says for now just keep taking it.All the way through the class this afternoon I was shaking like you wouldn't believe. THen someone from disabilities came over to help me at the end of the class, but they made me feel worse by saying you can always do the course over a longer period if you need it etc etc. But I don't WANT to do it over a longer period- I want to sort it out NOW! THis is my DREAM!!!! This is what kept me going through my dark days- the thought of getting here.My tutor says there must be a meeting next week between college, the dept and the disability office where we're about to try and sort stuff out. I should be glad- but I'm nervous. What if disabilities now start being nice and make me llook like a fool who exaggerated things? I can't believe how useless they've been:(I went to see the College Dr today and he was lovely- he's heard of pots but he told me it's perfectly normal to feel erratic and like you're not good enough to be here, that I have a brain that works although my body doesn't, and I should just calm down. I felt instantly less shaky for talking to him. He was SO nice.Atleast now I don't feel like I'm going to have to drop out!So: what should I do about the shaking which seems now to be wearing off? ( I took my table this morning). I looked up side effects and apparently shaking/tremor even convulsion is among those. Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted October 25, 2005 Report Share Posted October 25, 2005 Persephone,I'm sorry to hear you're still having a rough time. Do you think your wobbily legs could have something to do with the pain you were in last night? I ask because my fibromyalgia sometimes makes me weak. I'm also glad you found a doctor on campus who understands. Way to go!I hope you figure out what's going wrong. It sounds like you may need to go see your POTS doc. Good luck and keep us posted,Lauren Quote Link to comment Share on other sites More sharing options...
persephone Posted October 25, 2005 Author Report Share Posted October 25, 2005 Hurrah! someone who says something! was a bit worried by the fact 20 people looked at my post but only you replied--I don't want to be the only one with such an ODD problem! Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted October 25, 2005 Report Share Posted October 25, 2005 Persephone, I'm not sure if you're probelm is odd or not. I do know that you seem to be having problems more frequently. Do you think it has to do with grad-school stresses? I really hope you start getting answers, it sounds like you're pretty miserable. Also, have they fixed your scooter yet? Quote Link to comment Share on other sites More sharing options...
Laura Posted October 25, 2005 Report Share Posted October 25, 2005 Hey there Perse! Sorry you've had this going on now on top of everything else! I think if it were me, I would follow the doctor's advice and continue with the florinef. It takes a little while (like about a week or so) for the florinef to build up the salt retention and do all of the things it does to your system so you might do well to carry on with taking it and see how things go in the next week or two. It is hard to know if what you are experiencing is from the new med, or if it is a lovely new POTs experience. It could be a combo of the new med in your system and the lack of sleep from the leg pain that is sending your system in a bit of a spin. Be sure to use your scooter wherever you can in the next days until this gets back to normal and try not to do any extra walking till you are sure that you're feeling better!! When I have overdone things, don't have enough sleep, or am extra stressed (emotionally or physically) I've notice that I have a much harder time with walking, standing up from a sitting position ( my legs shake uncontrollably) etc. Hope things get better for you. Don't be too hard on yourself! If things persist, get a hold of the cardiologist again and see what he suggests from there. Laura Quote Link to comment Share on other sites More sharing options...
persephone Posted October 25, 2005 Author Report Share Posted October 25, 2005 Thanks Laura- good to know I'm not the only one with the uncontrollable shakes! Quote Link to comment Share on other sites More sharing options...
blackbirdsings Posted October 26, 2005 Report Share Posted October 26, 2005 Sorry, you had such a rough day with the faints. I have had to extend courses and wouldn't have been able to complete them if that hadn't been an option. Get it in writing if you do that...I had a professor try to flunk me because I passed out, than got a high temp and couldn't get out of bed! Despite straight A's and not missing a class before this, I had to go to the Dean. Insane. Anyhow, I did VERY poorly on Florinef and it was a nightmare for me. I passed out ALL day on it and had additional side effects. Even on it for months, different doses etc, I kept passing out, and we tried it on different occasions. Each time was really bad for me and I kept getting worse. I did have additional problems, not just increased fainting. I agree that its worth the try to continue on it and hopefully it will build up and work well for you. I really hope the florineft works for you, but did want to add that its not always the best med for all of us. Good luck!! Quote Link to comment Share on other sites More sharing options...
wareagle Posted October 26, 2005 Report Share Posted October 26, 2005 Hey Pers..I had some weird reactions when I started florinef too. When I took a whole tablet I was extremely sleepy..then that evening my legs and lower back hurt like crazy for an hour or so. On 1/2 tablet I had several "paniky" episodes..I was shaky/dizzy and just didn't feel good..so I went to 1/4 tablet..this I was able to tolerate and within 3 weeks I had no noticable side effects.I'm supposed to be upping it to 2 times a day..but I haven't had the courage yet..gee I've only been on it for a year..you'd think I'd be okay with increasing the dose by now! Anyway..point is you may want to just decrease your dose untill you get used to it then gradually up it. I know that smaller doses aren't considered "theraputic"..but I've come to believe that everyone has a different level of tolerance to meds. and what's not high enough for some is too much for otheres regarding dosage and the teraputic benifits.Hope you feel better soon..on a side note I wanted to say I'm soooo happy that you've gotten to Oxford..I saw the pics. you posted and it looks beautiful there..keep your chin!! Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted October 26, 2005 Report Share Posted October 26, 2005 Hey Perse,I'm so sorry you're having all this happening... if it is the fludrocortisone, then maybe the side effects will wear off after a little while? (*she says hopefully*)The main side effect I had with Florinef was awful nausea.. like jumping up in the middle of a lecture to run to the bathroom. Do you think it could be related to the shaking you mentioned earlier, where you were told it was 'just a POTS thing'?? I don't remember if you had started the fludrocortisone then or not. I'm sorry about the jelly legs, too- that can't be fun. I've only gotten that occasionally, so I don't really have anything definitive to say about that, either. Medicine seems to affect you more than most people (clearly!), which in the long run probably is healthier than having tons of chemicals floating around in your body and not doing anything, unless you need the medicine... Hmm...Any chance you might have good results from non-pharmacological means? Sorry I'm not much help, but I just wanted you to know that I'm thinking of ya!Megan Quote Link to comment Share on other sites More sharing options...
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