ljoeb

Good Wednesday to all.... after my hospitalization in June of '07 that started me on this journey, I was told in no uncertain terms that I shouldn't drive unitl, as my doc who released me said, "you get this figured out." I had a tilt-table test in August '07 that discovered my OI and I was told then by the EP Cardiologist that I shouldn't drive, and I asked for how long, and he said probably forever, especially because I live in Texas. He said that Texas looks at this condition as they do epilepsy, and you have to be "event free" for 6 months in order to drive legally. At the time, that time frame was starting over numerous times a day (I was having 3 - 5 presyncompal spells a day at the time). I asked my current EP doc who has been doing a wonderful job with me if he would "release me to drive" back in March or April, and he said I'd have to pass a new Tilt table test on my meds in order for him to release me, and at the time (or even now) I probably wouldn't. I do drive every so often. There are times I go out to the store or wherever just to get out of the house and I find myself wishing I hadn't gone out because Ill start feeling woozy and weird and really have to focus to get home. Texas is really stringent on their driving restrictions with people who have any kind of disorder like we have. I have been told that I could lose my license and become uninsurable if I were to be pulled over for anything or be in an accident even if it wasn't my fault. So I know I have to be careful. But it is quite limiting and frustrating to those who drive me around because I am a terrible back seat driver. How do other states look at this??

My doctor wanted me to start out at .1 and thought we would go up to .3. After reading everything I could on this site, I called the doc and asked if I could start at half of that and he said sure. I have been on .05 mg since. It has helped quite a bit, although I think if I was taking a bit more, I would feel even better. I am one of those that has blood pressure issues with it and am already taking clonidine to help keep my bp in check. I am going to Vanderbilt on the 28th of this month and let Dr. Raj evaluate me and see if I need to take more or something else.

I am going to ask my neurologist about cymbalta. I am currently on Lyrica for some neuropothy pain, but I have also put on 10 lbs since I have been on it. I have read where cymbalta helps in the same way as Lyrica, but does not promote weight gain, but weight loss. I could also benefit from the psych effects of cymbalta as I am mildly depressed due to all the stuff going on.

Nope... not on a beta blocker. I do have a pacemaker because my heart rate was too low. It is set at 85 bpm at the low end and won't let my heart go over 150. However, I have had this issue with my heart not raising much during exercise long before I had a pacemaker... but just never paid it much mind. I joined a "spin" class (that's where you sit on a stationary bike and get yelled at for an hour by the instructor telling you to go fast... or stand up... or slow down.. etc) back in January of 2007. I was 300 lbs then too, and within 3 class sessions, I was able to go the whole hour without stopping. Everybody in the class would literally be pouring sweat within the first 15 minutes... I was lucky to have a few beads on my forehead and maybe a little wetness around my mid-section after the whole hour. During the class, the instructor would have us check our heart rate at intervals, and mine was rarely ever above 130... it was crazy. She just thought that even for my size that I was in pretty good shape.. I laughed. On days I didn't do the spin class, I could workout on the eliptical for 45 mins at a good pace without even breathing hard... weird.

My problem has been that my heart rate does not increase to my "target range" unless I am doing something ultra radical. The highest it will usual get is in the 130's. I did a "metabolic stress test" with my EP doc that diagnosed orthostatic intoloerance (he put me through a battery of autonomic tests) and my heart rate barely got to 135 by the end of the test. I asked the tech if that was normal (she kept asking me through the test if I could keep going and I said I was fine) and she said that a man my age, 47 at the time and 300 lbs, would not normally complete the test and if they did, their heart rate would be much greater. She was looking for the heart rate to be in the 180 or more range. I asked her when it was over, "I thought you said this was supposed to be hard?" My problem is I don't sweat much at all when I excercise (or any other time for that matter), so after about 20 minutes or so on a treadmill walking at the highest level of incline at 3.3 miles per hour, I am not winded, but my body starts to "heat up" on the inside and I know I better stop before I overheat. That is not a fun feeling. Just a quick question: My normal body temp is in the high 96 to low 97 range. When I am outside (Texas heat) for just a few minutes, I can take my temp and it will be over 100 degrees and it takes a while to drop back to normal. Is this rise in body temp normal? I wouldn't think it is, but just wondering what you have experienced.

Although my diagnosis is not POTS, just general orthostatic intolerance (at least for now.... I will see a neurolphysiologist in a couple of weeks who hopefully will give me a clearer diagnosis), I was anemic when I went into the hospital last June 2007. It took several months for my numbers to come up. All my doctors at the time didn't have any answers. I had a colonoscopy even to see if I was bleeding somewhere. That was negative. I had given blood (double red cells which means I couldn't give for 120 days between) a couple of times before that hospitalization and both times they almost didn't let me give because whatever initial test they did showed that I was anemic, but when they did it again, it was ok (I hate getting my finger stuck once much less twice within just a few minutes). At the time, they just said the first test must have been wrong. Well, I guess I was on the "anemic" side of things for a while.

I've been off work for just over a year now, and am looking to go back to doing "something." I was in a medium stress sales type job that required lots of "muti-tasking" and dealing with people on the phone. THere are still several times during my week that I can't make a "intelligible sentence" due to "brain fog," and I never know when its going to come about. So going back to the same job doesn't look too likely. I have been doing much better lately, but it seems just when I feel like I can "think" about going back to some work, I'll "hit a wall" and have several days that are just terrible. I used to teach and sub/teach. I think I may try subbing again. At least, as a sub, I only have students for about 5 1/2 a day and several breaks. And I can accept or turn down assignments at will. It will be "tricky" to see how it will work as I can feel good in the morning and rotten by 10am. But at least I won't have a daily commitment. And, fortunately for me, I have a wife that has a great job along with some outside sources of income. I can't imagine what some must go through who don't have that kind of support.

I was having pretty regular nausea until I started taking "Lyrica" for a nerve burning pain I am having. Its weird, but I haven't had much nausea at all since then... and my appetite is stronger than its been in a longggggtime!

The first cardoiogist I had wasn't at all concerned that my resting heart rate was in the mid to high 40's (46 - 49). I was 47 years old and weighed 300 lbs. I had just spent 3 days in the hospital where everybody, the er doc, my family doc, and all the nurses were extremely concerned that my heart rate was too low. I never got much sleep at night because my heart rate would drop to the low 30's and the nurse would come running in and wake me up all excited. When I went to see the cardiologist in his office a couple of days after I got out of the hospital, he said that he worked with several "world class atheletes" that had resting heart rates in the low 40's. I told him, "Doc, Your not looking at a world class athelete, but a fat *** 50 year old!" He laughed and then said my problem was neurological and sent me to a neurologist who diagnosed my "sick sinus syndrome" (severe bradychardia) and sent me to a different cardiologist. My EP Doc after numerous other tests discovered that I not only had sick sinus syndrome, but orthostatic intoloerance. I got a pacemaker placed and it is now humming at a constant 85bpm. That helps keep my blood pressure "stabalized."

So I'm not alone... I too get dizzy and lightheaded very quickly reaching to do things above my head, I just have never thought to mention this to my doctor. I'll need to do that next time I see him.

Thanks Alicia.. I found the info I needed with your help. If no one has told you lately, YOU ARE AWESOME!! Have a great week! Joe

I reached my heighest weight ever due to, at the time, the "unknown little demon" that was wrecking havoc on my body (I gained 80 lbs in a little over a year). When I finally started getting some answers, I knew I had to do something to get the weight off so I joined Weight Watchers in February. I like the plan because it doesn't require any special foods and the great online tools that I can use. Without much activity at all I have been able to lose 30 lbs... a little more than a pound a week. My goal is to lose about 50 more pounds, and I know it will be tough because of the medicines that want to fight against weight loss and my lack of activity, but I am going to persevere!!

I have my appt. at the Vanderbilt Clinic with Dr. Raj on August 28. I was surprised to get in so quickly having heard of the longer usual wait (the next choice for an appt. was March '09). It looks like from the paperwork that they are going to be doing a number of similar tests that I have already had. I am hoping for a more "clear" diagnosis as my EP doc has only diagnosed me with the general "dysautonomia," basically orthostatic intolerance due to low blood volume (which has improved about 60% with florinef and clonidine and more sodium). Although I still have my "hazy" days unpredictably, my real concerns are several new neurological issues that are going on. I am seeing an Autonomic Neurophysiologist in Dallas before I go to Vanderbilt. Dr. Raj is a pharmacolgist, and I am hoping for a "tuned up" medication regimen. I have read several of your experiences in the studies they do at Vanderbilt, I was hoping to hear from those who have just gone to the clinic and those who may have seen Dr. Raj for any insight. Thansk! Joe

I drink lots.... at leat 64 oz of water and about the same if not more of flavored water, gatorade, tea etc, as much as 130 - 150 oz of fluid a day.

My wife gives me a b12 shot in the tusshy every 2 weeks. I think she "enjoys" that a bit too much!! HA!!