Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Joan, I'm sorry you've had full out vertigo. That's scary stuff. I had one dizzy episode that was very brief - just kind of " whoosh " , and I flipped, and it was gone. Maybe I'll mention this stuff to the doctor and see if we can expect it to go away anytime soon. In the meantime, I hope you don't get anymore episodes! >From: BJMaes@... >Reply- onelist > onelist >Subject: Re: [ ] Dizziness >Date: Sun, 15 Aug 1999 20:12:14 EDT > >From: BJMaes@... > >, >I am just the opposite, I am on 50 mgs of Imuran and 1,200 mgs Urso and I >have had two episodes of vertigo in the last five weeks---before that I >have >had a few times where I was light headed but figured it was from getting >out >of bed too quickly or standing up to quickly---who knows, I just don't want >to have it happen again----Joan in PA > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 , I am just the opposite, I am on 50 mgs of Imuran and 1,200 mgs Urso and I have had two episodes of vertigo in the last five weeks---before that I have had a few times where I was light headed but figured it was from getting out of bed too quickly or standing up to quickly---who knows, I just don't want to have it happen again----Joan in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 I used to get dizzy a day or so before my period. J >From: KATBERCOO@... >Reply- onelist > onelist >Subject: Re: [ ] Dizziness >Date: Sun, 15 Aug 1999 21:27:02 EDT >MIME-Version: 1.0 >From errors-165537-5291-shireen42=hotmail.comonelist Sun Aug 15 >18:27:13 1999 >Received: (qmail 3418 invoked by alias); 16 Aug 1999 01:26:34 -0000 >Received: (qmail 3292 invoked from network); 16 Aug 1999 01:26:31 -0000 >Received: from unknown (HELO imo23.mx.aol.com) (198.81.17.67) by >pop.onelist.com with SMTP; 16 Aug 1999 01:26:31 -0000 >Received: from KATBERCOO@... by imo23.mx.aol.com (mail_out_v22.4.) id >hBFZa22972 (4241) for < onelist>; Sun, 15 Aug 1999 >21:27:03 -0400 (EDT) >Message-ID: <c346a32d.24e8c2e6@...> >X-Mailer: AOL 4.0 for Windows 95 sub 21 >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: KATBERCOO@... > >Dear Joan and : > >I've had problems with dizzy spells for a long time. Various doctors have >attributed it to my blood sugar problems. Since I started a 'hypoglycemia' >diet they have decreased in frequency. I've had blood sugar problems off >and >on since I was 15, but the prednisone really exacerbated the problem. The >dizzy spells are pretty scary. The endocrinologist wants me to start a new >medication for it, but I'm balking until I know how I'm going to handle the >cyclosporine. You might consider seeing an endocrinologist to have your >blood sugar checked. > >Kathy (AIH) >Seattle area > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Dear Joan and : I've had problems with dizzy spells for a long time. Various doctors have attributed it to my blood sugar problems. Since I started a 'hypoglycemia' diet they have decreased in frequency. I've had blood sugar problems off and on since I was 15, but the prednisone really exacerbated the problem. The dizzy spells are pretty scary. The endocrinologist wants me to start a new medication for it, but I'm balking until I know how I'm going to handle the cyclosporine. You might consider seeing an endocrinologist to have your blood sugar checked. Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Thanks Kathy, do you get so dizzy you get sick? Just curious, Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Dear Joan: My dizzy spells usually start with a vertigo feeling followed by a sort of 'cold wash.' Then I feel like I could faint, but I never have lost consciousness. At this stage of the game, I'll usually immediately get something like orange juice or Gatorade to give me a quick sugar fix, then I'll have a healthy snack as soon as I get a chance. Since dehydration gives me the same feeling, I usually drink a lot of water afterwards too, just in case. When they've happened to me at the grocery store, I've actually gone to the juice isle and gotten some Gatorade and drunk some right there. Then I'll just take it to the check out. I try to carry a Nutragrain bar or something like that with me so get a quick sugar fix on the road if I need one. If they happen to me on the road, I try to get home as soon as possible. I've pulled over a few times. I don't usually feel sick afterward (no more than usual anyway), although sometimes I won't feel like doing much for the rest of the day afterward. The hypoglycemia diet has really helped. I seem to have a lot less of them now, so am inclined to think that it really is my blood sugar that's causing them. I have read that both dizziness and vertigo are side affects of prednisone, so that could be a factor, too. Hope this was helpful. Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Dear Jody: I have definitely noticed an increase in motion sensitivity. I can't be a passenger in a car unless it's 'interstate' driving. My husband gets annoyed at me because of it sometimes. I can't tell you how many outings have been ruined by my getting motion sick in the car. There are a lot of tree lined, 2 lane highways here in western Washington, and sometimes, even when I'm driving, they get to me. I'm glad that you brought it up. I wondered if it was because of the prednisone. Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Kathy and Jody There is a new movie out that I would recommend that you NOT see-its the Blair Witch Project. It is truly made by only 2 cameras and it's like somebody shooting a video so when they are running with the camera it becomes too much for the audience-it has actually caused a lot of problems in the theaters with people barfing in the isles!!! Just warning you in advance! Susie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Hi everyone. I have a survey question for you all.. How many of you have noticed an increase sensitivity to motion. such as car rides, rollor coasters, movies with a lot of movement in the film ie driving scenes..??? I have noticed over the last few years that I am more and more unstable with regards to movement. I am a major roller coaster fan and this last time at the park I was feeling sick after most of the rides..Its a bummer..but I also have noticed that I cant sit very close to the screens at movies or even tolerate movies that give you the sensation of moving in a car or plane or whatever..I remember hearing a long time ago that this could be related to the autoimmune disease.. Jody --- susan johnson <shireen42@...> wrote: > From: " susan johnson " <shireen42@...> > > I used to get dizzy a day or so before my period. > > J > > > >From: KATBERCOO@... > >Reply- onelist > > onelist > >Subject: Re: [ ] Dizziness > >Date: Sun, 15 Aug 1999 21:27:02 EDT > >MIME-Version: 1.0 > >From > errors-165537-5291-shireen42=hotmail.comonelist > Sun Aug 15 > >18:27:13 1999 > >Received: (qmail 3418 invoked by alias); 16 Aug > 1999 01:26:34 -0000 > >Received: (qmail 3292 invoked from network); 16 Aug > 1999 01:26:31 -0000 > >Received: from unknown (HELO imo23.mx.aol.com) > (198.81.17.67) by > >pop.onelist.com with SMTP; 16 Aug 1999 01:26:31 > -0000 > >Received: from KATBERCOO@... by > imo23.mx.aol.com (mail_out_v22.4.) id > >hBFZa22972 (4241) for < onelist>; > Sun, 15 Aug 1999 > >21:27:03 -0400 (EDT) > >Message-ID: <c346a32d.24e8c2e6@...> > >X-Mailer: AOL 4.0 for Windows 95 sub 21 > >Mailing-List: list onelist; > contact > > -owneronelist > >Delivered-mailing list > onelist > >Precedence: bulk > >List-Unsubscribe: > <mailto: -unsubscribeONElist> > > > >From: KATBERCOO@... > > > >Dear Joan and : > > > >I've had problems with dizzy spells for a long > time. Various doctors have > >attributed it to my blood sugar problems. Since I > started a 'hypoglycemia' > >diet they have decreased in frequency. I've had > blood sugar problems off > >and > >on since I was 15, but the prednisone really > exacerbated the problem. The > >dizzy spells are pretty scary. The endocrinologist > wants me to start a new > >medication for it, but I'm balking until I know how > I'm going to handle the > >cyclosporine. You might consider seeing an > endocrinologist to have your > >blood sugar checked. > > > >Kathy (AIH) > >Seattle area > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Dear Jody: I suppose it could just be the liver disease in general. I've always had mild problems with motion sickness (like riding in the back of a big car), but I've noticed it's much worse since the AIH. I've always been a big rollercoaster buff too, although I haven't tried one since being sick. There aren't any good amusement parks in this area. The closest big one is in Idaho and is a whole days drive from where we live. We went there once, but the big coaster was closed down that day. I have ridden a couple of log rides and did OK. The biggest problem I had was getting my chunky butt out of the thing once the ride was over. It was pretty embarrassing. I vowed not to ride any more rides until I've lost a lot more weight! I've become so darn sun sensitive lately and my joints have been bothering me so much, that the last time there was a fair in town, I just let my husband and daughter go themselves. I just couldn't imagine walking around that much and being in the sun to boot. I know, I sound like a load of fun, but what can you do? Have a good day! Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Dear Susie: Thanks for the warning. I had heard about that too. I'm not big on the shock scary movies anyway, although I've heard that one is pretty good. My sister sent me a home video of her walking around her new home and it made me queasy and I couldn't watch the whole thing, so I know that that movie would probably bother me. Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Kathy, I dont think its the prednisone cuz Im not on prednisone and I get it big time.. Jody --- KATBERCOO@... wrote: > From: KATBERCOO@... > > Dear Jody: > > I have definitely noticed an increase in motion > sensitivity. I can't be a > passenger in a car unless it's 'interstate' driving. > My husband gets annoyed > at me because of it sometimes. I can't tell you how > many outings have been > ruined by my getting motion sick in the car. There > are a lot of tree lined, > 2 lane highways here in western Washington, and > sometimes, even when I'm > driving, they get to me. I'm glad that you brought > it up. I wondered if it > was because of the prednisone. > > Kathy (AIH) > Seattle area > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Jody, I have always had trouble with motion sickness, like on planes, or boats. The only amusement park rides I can tolerate are the bumper cars and maybe the roller coatser. I haven't been on a roller coatser for about 10 years but had AIH then. Don't know if I could stomach it now though. Dianne A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Dianne, you say you had AIH ten years ago. Have you somehow miraculously been cured or has it just gotten more tolerable? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Hi I've had elevated liver enzymes for 17 years. I was first diagnosed with AIH(1985), then PSC also(1996). It seems I have an overlap of both. Also Subacute Cutaneous Lupus Erythematosus and Sjogren's Syndrome (as of 1997). My ALT and AST came down dramatically when I started taking prednisone. Imuran did nothing. Actigall for the PSC lowered all of my enzymes to almost normal. I stopped taking it because of the nausea. So, my enzymes are quite elevated. Dianne A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Jody, No motion problems with me. However, when I would get dizzy, if I closed my eyes dizziness would go away. Do you get sea sick? I do not. J >From: Jody Compton <compton_61@...> >Reply- onelist > onelist >Subject: Re: [ ] Dizziness >Date: Mon, 16 Aug 1999 09:14:00 -0700 (PDT) >MIME-Version: 1.0 >From errors-165537-5308-shireen42 Mon Aug 16 09:11:00 1999 >Received: from [209.207.164.205] by hotmail.com (2.1) with ESMTP id >MHotMailB981831300C9D82197DCD1CFA4CD60520; Mon Aug 16 09:11:00 1999 >Received: (qmail 10287 invoked by alias); 16 Aug 1999 16:10:27 -0000 >Received: (qmail 10279 invoked from network); 16 Aug 1999 16:10:27 -0000 >Received: from unknown (HELO web1301.mail.) (128.11.23.151) by >pop.onelist.com with SMTP; 16 Aug 1999 16:10:27 -0000 >Message-ID: <19990816161400.4143.rocketmail@...> >Received: from [206.15.84.102] by web1301.mail.; Mon, 16 Aug 1999 >09:14:00 PDT >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: Jody Compton <compton_61@...> > >Hi everyone. I have a survey question for you all.. >How many of you have noticed an increase sensitivity to motion. such as >car rides, rollor coasters, movies with a lot of movement in the film >ie driving scenes..??? >I have noticed over the last few years that I am more and more unstable >with regards to movement. I am a major roller coaster fan and this last >time at the park I was feeling sick after most of the rides..Its a >bummer..but I also have noticed that I cant sit very close to the >screens at movies or even tolerate movies that give you the sensation >of moving in a car or plane or whatever..I remember hearing a long time >ago that this could be related to the autoimmune disease.. >Jody > >--- susan johnson <shireen42@...> wrote: > > From: " susan johnson " <shireen42@...> > > > > I used to get dizzy a day or so before my period. > > > > J > > > > > > >From: KATBERCOO@... > > >Reply- onelist > > > onelist > > >Subject: Re: [ ] Dizziness > > >Date: Sun, 15 Aug 1999 21:27:02 EDT > > >MIME-Version: 1.0 > > >From > > errors-165537-5291-shireen42=hotmail.comonelist > > Sun Aug 15 > > >18:27:13 1999 > > >Received: (qmail 3418 invoked by alias); 16 Aug > > 1999 01:26:34 -0000 > > >Received: (qmail 3292 invoked from network); 16 Aug > > 1999 01:26:31 -0000 > > >Received: from unknown (HELO imo23.mx.aol.com) > > (198.81.17.67) by > > >pop.onelist.com with SMTP; 16 Aug 1999 01:26:31 > > -0000 > > >Received: from KATBERCOO@... by > > imo23.mx.aol.com (mail_out_v22.4.) id > > >hBFZa22972 (4241) for < onelist>; > > Sun, 15 Aug 1999 > > >21:27:03 -0400 (EDT) > > >Message-ID: <c346a32d.24e8c2e6@...> > > >X-Mailer: AOL 4.0 for Windows 95 sub 21 > > >Mailing-List: list onelist; > > contact > > > -owneronelist > > >Delivered-mailing list > > onelist > > >Precedence: bulk > > >List-Unsubscribe: > > <mailto: -unsubscribeONElist> > > > > > >From: KATBERCOO@... > > > > > >Dear Joan and : > > > > > >I've had problems with dizzy spells for a long > > time. Various doctors have > > >attributed it to my blood sugar problems. Since I > > started a 'hypoglycemia' > > >diet they have decreased in frequency. I've had > > blood sugar problems off > > >and > > >on since I was 15, but the prednisone really > > exacerbated the problem. The > > >dizzy spells are pretty scary. The endocrinologist > > wants me to start a new > > >medication for it, but I'm balking until I know how > > I'm going to handle the > > >cyclosporine. You might consider seeing an > > endocrinologist to have your > > >blood sugar checked. > > > > > >Kathy (AIH) > > >Seattle area > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Dianne, i am very new to all these other liver diseases and not familiar with the treatments etc. so please bear with me. my 10 yr old son was diagnosed with AIH 7 years ago and has been on various doses of prednisone and imuran. thank god his lft's are all right on target with the exception of the ast and alt. now today's results show them to be almost norman but his platelets are just below normal. do you or anyone else have any experience or knowledge of why this may happen. i am hoping its just a med reaction and nothing new to worry about. i am waiting to talk to his doc. i missed his call back this afternoon and will talk to him tomorrow. thanks for your reply. i am new to the group too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 SueB, thanks for the encouragement. what made your numbers go back to normal. any vitamins or change in lifestyle? thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 , I had a drop in platelets at one stage a while back. Questioned the doc and she told me that the meds have a lot to do with that and not to worry about it. I hope that is all that it is for your son too. SueB. ---------- > From: KPY@... > onelist > Subject: Re: [ ] Dizziness > Date: Tuesday, 17 August 1999 10:34 > > From: KPY@... > > Dianne, i am very new to all these other liver diseases and not familiar with > the treatments etc. so please bear with me. my 10 yr old son was diagnosed > with AIH 7 years ago and has been on various doses of prednisone and imuran. > thank god his lft's are all right on target with the exception of the ast and > alt. now today's results show them to be almost norman but his platelets are > just below normal. do you or anyone else have any experience or knowledge of > why this may happen. i am hoping its just a med reaction and nothing new to > worry about. i am waiting to talk to his doc. i missed his call back this > afternoon and will talk to him tomorrow. thanks for your reply. i am new to > the group too. > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 Tyler who is 16 yr old and has AIH and PSC and Crohns and Rhuematoid Arthritis also has low playlets...they have been down to 40,000 and when they are just above 100,000 his docs are pleased...still low but an improvement for Ty. He has had enlarged spleen in the past....but it is better....not normal but better... More than that I can not help you...One question...does your son bruise easily....Ty does..He will have huge bruises and not know where they came from or little ...very little circle bruises...I alwo have very low playlets...35,000 and get the same bruising...so I know that its not that these bruises are from horsing around...they just apear...The higher the count the better he is with the bruising... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 Luanne, you answered several of the questions i just asked you, thanks. Cason does show bruises but he plays every sport under the sun and with great enthuiasm so i don't really think they are abnormal. He also has a go-cart which bounces him around some and may also bang him up. I am fortunate that he is so active and pray that he remains that way. I am also very grateful that his LFT's are normal with the exception of the AST & ALT. thanks for the info on the platelets. still waiting on the docs explanation. What area are you in. I am only curious to know in case i might want a second opinion on the treatment with prednisone. you mentioned the other meds, which i may ask his doc about. Thanks, and hang in there. Good luck today too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 1999 Report Share Posted August 18, 1999 , No, nothing changed it just happened. My doctor thinks I am great, she gets to see all sorts of things with my case, things she has never encountered before. We often laugh about her being so enthusiastic about my case, and me just wanting to be normal. SueB. ---------- > From: KPY@... > onelist > Subject: Re: [ ] Dizziness > Date: Tuesday, 17 August 1999 22:52 > > From: KPY@... > > SueB, > thanks for the encouragement. what made your numbers go back to normal. any > vitamins or change in lifestyle? > thanks, > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 1999 Report Share Posted August 19, 1999 Thanks Kathy, I thought maybe it might have something to do with my sugar levels. I was surprised to find out my doctor isn't monitoring that since I've been on Pred and Imuran. Does eating less sugar help? Thanks for your advice. I'll look into it for sure. >From: KATBERCOO@... >Reply- onelist > onelist >Subject: Re: [ ] Dizziness >Date: Sun, 15 Aug 1999 21:27:02 EDT > >From: KATBERCOO@... > >Dear Joan and : > >I've had problems with dizzy spells for a long time. Various doctors have >attributed it to my blood sugar problems. Since I started a 'hypoglycemia' >diet they have decreased in frequency. I've had blood sugar problems off >and >on since I was 15, but the prednisone really exacerbated the problem. The >dizzy spells are pretty scary. The endocrinologist wants me to start a new >medication for it, but I'm balking until I know how I'm going to handle the >cyclosporine. You might consider seeing an endocrinologist to have your >blood sugar checked. > >Kathy (AIH) >Seattle area > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 1999 Report Share Posted August 19, 1999 Dear : Yes, eating less sugar helps. One main rule of thumb if you suspect that you have blood sugar problems, is to never eat something with a lot of sugar in it by itself. I have to eat about every 3 hours so have a pretty strict schedule of what to eat when. I have complete freedom within this schedule, but choose not to eat a lot of sweets. I really think that it has helped. If you are going to eat a carbohydrate, or sugar snack; make sure you eat some protein with it. For example, if you eat an apple as a snack, have a piece of cheese with it. The apple will cause your blood sugar to rise, and the protein will keep it from plummeting back down. You should check with your doctor right away if you suspect you have blood sugar problems. They can do a test that indicates what your levels have been for the last 3 months. Good luck! Take care! Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 1999 Report Share Posted August 19, 1999 Dear Kathy, Thanks so much for your advice! I will definitely start eating protein with any sugar snacks. I'm trying to make note of when I get most dizzy. Today it was after a granola bar, which was quite sugary. I had no idea about any of this. It really helps me out a lot. Actually, I asked my specialist (during our brief phone consultation) if I should be concerned about my dizziness, and told her I'd been having it for the past two weeks. She said a flat " no, dizziness is not indicative of anything " . I pretty much expected that reaction. I'm not too worried because it's not crazy bad, but I am eager to try anything that decreases it...so, thank you again! >From: KATBERCOO@... >Reply- onelist > onelist >Subject: Re: [ ] Dizziness >Date: Thu, 19 Aug 1999 14:21:09 EDT > >From: KATBERCOO@... > >Dear : > >Yes, eating less sugar helps. One main rule of thumb if you suspect that >you >have blood sugar problems, is to never eat something with a lot of sugar in >it by itself. I have to eat about every 3 hours so have a pretty strict >schedule of what to eat when. I have complete freedom within this >schedule, >but choose not to eat a lot of sweets. I really think that it has helped. > >If you are going to eat a carbohydrate, or sugar snack; make sure you eat >some protein with it. For example, if you eat an apple as a snack, have a >piece of cheese with it. The apple will cause your blood sugar to rise, >and >the protein will keep it from plummeting back down. > >You should check with your doctor right away if you suspect you have blood >sugar problems. They can do a test that indicates what your levels have >been >for the last 3 months. > >Good luck! Take care! > >Kathy (AIH) >Seattle area > >--------------------------- Quote Link to comment Share on other sites More sharing options...
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