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Everything posted by lizababy

  1. Dani, I do the same thing! I used to read a ridiculous amount but my focus tends to be a little blurry, along with my eyes, so I stick with the tv. I do find that online social outlets about the most ridiculous things help me as well. I go to some pretty ridiculous forums for people with various interests completely not related to my illness but other interests in my life so I can think/talk about something else. It allows me more interaction with people. I lean on my family (mom, siblings) when I need to as well. And when I get sad about it, I let myself.
  2. Midodrine was the first thing to make it possible for me to get up and about after I became sick. It is my doctor's first line of defense against OI. That being said, as my condition as continued to deteriorate, my dosage has been increasing. It typically only gets my blood pressure up to around 95/60 when standing and I am still very symptomatic.
  3. @Chaos - The doctor actually started a new policy where they take the blood sugar of all patients with autonomic dysfunction at each appointment at the same time as the blood pressures. This is an endocrinologist so she runs a Diabetes clinic. Admittedly, I am in the 3rd largest city in the United States; however, she is the only doctor listed in the entire state that treats any dysautonomia so her patients are either diabetic or have dysautonomia.
  4. Thanks, Julie! I had read about the no fruit juices, limited sweets/sugars. What do you guys drink to keep your bp up? The abdominal blood pooling keeps me from eating very often throughout the day (pains, bloating, the usual) and I have always hated salt. I end up drinking copious amounts of G2 and vitaminwater in order to keep my electrolytes up and my bp somewhere near functionable. Are there other options?
  5. sue, They did measure my insulin during the test. Normally, I would have asked for more information but by the time she gave me the basics regarding the hypoglycemia she had already hit me with a lot of other overwhelming test results (positive rheumatoid factor and positive Lyme test). I am going to make a point to be a little bit more prepared at my next appointment with her.
  6. I received confirmation from my doctor today on having Reactive Hypoglycemia. During the 5 hour GTT, my blood sugar level dropped down to 42 at the 3 hour mark. My endocrinologist informed me that this is commonly seen in people with autonomic dysfunctions. I was not surprised by this diagnosis as I have spent most of my life craving candy, cookies, and sweets every couple of hours. The doctor is sending me to a dietician in order to create a diet that assists with the hypoglycemia but is also high in sodium. For those of you with hypoglycemia, outside of small frequent meals, how do you manage your diet? What kind of changes should I expect?
  7. Did any of you have trouble bouncing back after this test? I had the 5 hour glucose test on Tuesday. I was not allowed my midodrine for the duration (for me, this was 25 mg) and very minimal water. This in combination with the 25 vials of blood they drew throughout the test has left me unable to get my blood pressure back up to my functionable level on meds. Has anyone else experienced these types of problems?
  8. For the most part, I have been constipated. I am going to the bathroom, maybe, once every 2-3 weeks and then this.
  9. I apologize first for the gross nature of this post. My blood pressure has been at record lows as of late. The doctor has recently done testing for Lyme and Lupus due to some issues with random bruising and falls. I am presently up to 10 mg of midodrine 3 times a day with 5 mgs between each dose. I am also taking .05 mg of florinef along with drinking copious amounts of vitamin water and gatorade to supplement. Last night, I was lounging around my house in a pair of yoga pants. I went to the bathroom to discover that unbeknownst to me, I had lost control of my bowels while lying on the couch. I felt absolutely nothing when this happened. I didn't even have any stomach cramps. It was just a very random, all of the sudden mess in my pants. Have others experienced this problem as an aspect of their autonomic dysfunction?
  10. Midodrine with florinef (.05 mg a day) helped with the headaches for me. But I take 5 mg doses in 3 hr increments throughout the day up to 8 times a day dependent on how much I am doing and sometimes I take 10 mg when needed.
  11. Lisa - I take both topomax and amitryptiline. I started topamax for seizures with the added bonus of migraine prevention nearly 10 years ago. I did not have any problems with migraines until this past year and it has controlled my seizures like nothing else out there as I have been seizure free since 2003. The amitryptiline, on the other hand, I started this past april. It makes a huge difference but it doesn't get rid of them. It more or less takes the edge off. The one thing I have found that does work is florinef. My doc says it helps because it increases the blood flow to the brain. The only problem with it is that I am more exhausted when I am taking the florinef religiously. ~~Elizabeth~~
  12. maia, have you looked into services offered by your township or municipality? In many areas, there are services for people with disabilities programs that are willing to provide such a service. Here (in the Chicago Metro region) we have PACE. While it is our public transit system, they do offer door to door service for people with disabilities. I cannot imagine that such a service is limited to Chicagoland.
  13. Tennille, Does your therapist have experience with chronic illness? While I am not in therapy now, in the past I have done phone sessions. When you have a repoir with a therapist, it becomes a lot less about your body language and more about dealing with how to manage the emotions. Have you considered looking into a therapist/social worker specifically trained in chronic illness and chronic illness management? I would imagine that someone specifically trained/experienced in this area would be very beneficial as I know there are many overlapping symptoms between chronic depression and POTS. (Plus, the depression inducing nature of living with chronic illness!) ~Elizabeth~
  14. I put four because when I am really good I can go about four straight good days. By good days, I mean days where I am able to get through the entire day of work or class without too many problems. Mind you, I am always home by 3pm and passed out on the couch by 4 but it is the best I can do. The downside is that I can typically only have two to three weeks like this before I end up with a week to two that I can barely make it to my bathroom.
  15. I put that I am able to work and do my errands. However, it is very day to day. I was housebound for four months earlier this year and will go for days to weeks at a time where I am housebound. Much of the time, I have to cut my day short and create my own schedule for work. Fortunately, my job is part time and I am able to do this. I have been on the hunt for a new job that I can do from home.
  16. Thank you for mentioning the severe vomiting/wretching! I do not have that response all of the time; however, when the hypotension is at it's worst I become very gaggy (this morning for instance!). My doctor either thought I was nuts or that something else was wrong as she order a gastric emptying study due to all of the vomiting/gagging. That being said, I can go weeks with the dips not causing this response. Other times, the dips make me more headachey/foggy than anything. In a few instances, I dipped so low that I fainted. For me, my response seems to vary week to week like the wonderful weather here
  17. I voted city/urban because it is where I have lived for the last 2 years. Although, previously I was about an hour south in the suburbs.
  18. Debra, I see Dr. Janice Gilden who is absolutely fantastic! She is over in the Ukranian Village, Bucktown area near Western and Division. She is an endocrinologist that also specializes in disorders of the autonomic system. She is very understanding with a fantastic staff. Instead of just prescribing new meds or telling me it is just a bad time, she runs more tests to see if there is something else going on. She looks at every possible option. Her office number is 312-491-5425. Judy (the office manager) will work with you to set up an appointment. Dr. Gilden does appointments on Tuesday, Fridays, and now Saturdays. Feel free to ask any other questions. I found her through the recommended doctors on dinet and had a lot of difficulty getting a diagnosis before. -Elizabeth
  19. Jen, I actually skip a lot of events/functions because it can just be so uncomfortable especially in the summer. When it gets real bad, I have trouble focusing through ten minutes of small group work in class or drowning out my co-workers in the next office space. The sudden switch to moderate temperatures has really helped me for short term situations though. I also move up the dosage on my midodrine when it gets tough because the doc allows me to increase as needed. Fingers are crossed that I make it through my sister's semi-baby shower tomorrow :-) ~Elizabeth~
  20. For me (at least right now!) it is the weird neuro symptoms I get from prolonged low blood pressure: confusion, lack of focus, inability to drown out outside noise when in group settings.
  21. My endo requested a CGMS as well. I completed it back in July; however, it was discovered that the sensor was faulty. I am redoing it next week. She has expressed concern about my blood sugars possibly going too low as I have a lot of very random extremity tingling. Hopefully, I can provide a little more insight afterwards. I know that when I took my sugars the first time it was always around 100 right after eating. I am ot sure what this means though.
  22. My doc said Yoga (and any form of stretching) is one of the best forms of exercise for me for a myriad of reasons. It is low impact and I am able to do "desk yoga" at the office if I want to. Some days, I will just do a few basic stretches to keep my muscles working. When I am crashed (like right now - ha!), I actually spend a lot of time doing that basic pilates technique of pulling my belly button towards the floor (well, couch cushion!) and holding. When I feel better, I am more comfortable streaming yoga instructions through my gymbox.com account than going to an actual class. I tried going back to a class; however, my inability to control the temperature became a huge issue for me. It also allows you to work at your own pace, pause as needed, and stop to cool down if your body is not adjusting very well. Edit to add: songcanary, I use gymbox.com. I stream yoga and pilates instructional videos through a roku box to my tv (you can also watch them on your computer). They have a wide variety of instructional videos and add new ones for each categories each week. On the rare occasion that I actually have copious amounts of energy, I will watch a cardio dance video for about 5-10 minutes of workout :-)
  23. I started the topamax before the dysautonomia. I can tell you this about the topamax and the migraines. My doc recently told me that my migraines were better because my bp was stabilized. I have such severe headaches every single day when my bp isn't stable. The other day I woke up and it felt like someone had literally beat me in the head with a baseball bat it was that painful. Doctor said that once my bp is stable that the headaches will be better because the blood flow is going back to my brain as it should be. When I went on Topamax around 2002, I found websites that referred to it as Stupamax because the brain fog on it is horrendous. I slowly increased my dosage over a period of six months (mind you I take it as my single method against grand mal seizures and to prevent the migraines that plague me with them) until I reached 300 mg a day. When my dose got higher and higher, I barely slept and could not think straight. I had the random numbness and tingling that I have now. Not to mention the lack of appetite. I ended up dropping an enormous amount of weight because somedays all I would eat would be a handful of skittles. I had gained an enormous amount of weight with a previous seizure med and dropped until I was 98 pounds (I am 5'3") on the topamax. The side effects eventually went away, I started eating again and now I experience no side effects from it. It is actually the only medicine that has kept the seizures at bay. Up until the dysautonomia became an issue, I was not having problems with migraines. That being said, from my understanding at my last doctor's appointment, if your blood pressure is not under control then the intense headaches will not be under control.
  24. It has been about a week and a half. I find that I am getting more and more tired. By the time I get home from work around 3 pm, I want a nap!
  25. Traci, I was religious at 5x a day on the midodrine no matter what at the request of my doctor. We had lengthy conversations to use my best judgement on deciding if I need more as only I can tell if I am feeling symptomatic or not. During my last period (and most recent appointment), my bp skyrocketed and has not come back down. Since then, it has been running on the very high end of normal and I have used my discretion to not take my midodrine. I would rather not take it than take it and run high. when I was solely on midodrine, my body tended to become exhausted more often if I did not take it. I wasn't able to get out of the fatigued mode if I forgot to take it on schedule. Now, I take both florinef and midodrine. Not taking the midodrine now, I am still able to recoup if I don't take it. I do not end up passed out for a week unable to move from exhaustion. I actually seem to have more energy! This was all a learning process though and I am getting better at managing the meds and so will you!
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