lizababy

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.

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.

@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.

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?

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.

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?

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?

For the most part, I have been constipated. I am going to the bathroom, maybe, once every 2-3 weeks and then this.

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?

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.

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~~

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.

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~

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.

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.