Racer

In a few months I went from never taking anything, to a never ending stream of pills. Midodrine 3 times a day, magnesium 2 times, prilosec, miralax... and I cant take any of them at the same time, and the magnesium is taken with food, but I cant eat in the AM... and this is only the start, add four more meds and I will supposedly be feeling great! The medications work, and they do make me feel somewhat better, but I really have a hard time convincing myself that I actually need medication. I am really having a hard time taking them regularly. I end up skipping doses because I think I can go without, or I totally forget. I just cant imagine adding more medication. I know I am a "lightweight" when it comes to this, I just cant convince myself to add more medications, even if they will make me feel better.

Thanks everyone for the advice Part of the problem was not having a car and the temperature being so cold. The weather warmed up and I have been able to get some much needed exercise and fresh air. I just got a car so I have regained my ability to travel some. Getting a car is a major victory, and has really lifted my mood. Now, if I could just get routine sleep...

Having hard time dealing with everything... I live with my parents, and our relationship is toxic at best. We live in a toxic house, in a toxic environment, and eat toxic food. My job is stressed to the max, and I just cant handle people anymore. My parents partly support me since I dont make much money, but they have there own problems with alcohol and drug addiction. I eat a horrible diet of junk food, fast food, whatever is cooked or leftover. I dont have many friends, and lately have been spending way to much time in my bedroom feeling depressed. I imagine this is all making symptoms worse. I have been having tons of trouble sleeping. I tried to get sleeping meds from my doctor, but he was uncomfortable prescribing anything without first seeing the neurologist (I dont blame him). My neurologist visit is a month away, and if they want tests, this will be additional months of waiting. I just have this strong urge to run away from everything and start life over again.

The test says I am INTJ, but I didnt add it to the poll since I dont exactly agree with it. I am debating the validity of it, so this should give you a good idea of my personality type lol. I am a perfectionist, tend to think scientifically/logically about everything, and have a strong urge to debate with everyone who I think is wrong. I am not afraid to voice what is on my mind (this gets me into trouble at times). The nickname I am called is "Sheldon" (the guy from "The Big Bang Theory"). My personality is probably partly a result of having aspergers. I am social and have friends, but it does not come easy to me.

My understanding, urination is partly controlled by the autonomic nervous system, so dysautonomia can cause problems with urination. I have excessive urination and urgency. I go every 30 minutes or so, but usually try to push it towards a hour. If I hold off at the first urge, it will subside for a bit, but then I start to risk urgency. When out of the house it is always on my mind, since if I hold for to long I risk disaster! When away from restrooms, it is a hard decision, do I dehydrate and feel bad, or risk not making it to a restroom in time!

Unknown connective tissue like disorder runs on my dads side. Everyone is above 6ft, with major vision problems (they have all had eye surgery!), skin elasticity problems, heart issues, etc. Not exactly eds or marfans, but not really sure. Now on my moms side, short stature is a issue. Most of them have been diagnosed with a anxiety disorder. My brother also has aspergers (and has a autistic son), and I am certain my mom can be placed on the asperger spectrum also. I guess I am not made up of the greatest genetics, lol

thanks everyone, I feel a bit better about this appointment.

Thanks! I made mistake of looking on youtube to see examples of typical neuro exam. I really should see this neurologist (and I will), but now I so badly want to cancel the appointment. I didn't know they will test memory and having my memory tested really bothers me. I have had those sort of memory tests numerous times in the past, so I know how the test will go, and I know how I will feel emotionally as a result of it. I know simple questions, being asked to remember a few things should be a painless part of the test, but I am really sensitive to this problem.

I have been going to a cardiologist/electrophysiologist for the past year. While he has been great at helping me with this side of things, I have not seen any other doctors or got help for any of the other problems. So I went to see a new general physician, and this guy is great!!! He admitted that he didn't know much at all about autonomic dysfunction (diagnosed by cardiologist), and that he had to look it up before talking to me. He was overly enthusiastic about sending me to specialists to determine what all is going on. He assured me that we would figure it out. I left with a appointment for a neurologist. What should I expect from a neurology visit?

ahh, never mind

I assume your talking about people who have pots with no blood pressure fluctuations? Since many people experience fluctuations in blood pressure along with tachycardia, the lines are obviously blurred. In these cases, one is not speculating if there is hypoperfusion? So these people dont have pots? By what standards? Nothing personal, I just think it is dangerous to make a assertion based on a strict interpretation on something that is not so clear cut?

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Anyone know if a qt interval can become prolonged after exercise and resolve during rest, or is the qt length always the same? I am looking at my medical records (from a year ago) and a ekg showed a QT interval of 490ms. Originally I got the diagnoses of LQTS (fainting + 490ms!). LQTS was ruled out because 3 subsequent ekg did not show a prolonged interval. Just wondering how this can happen? The cause of my fainting was found to be bp related, so I am not really worried about the lqt, but the possibility of a mistake lingers in the back of my mind!

Currently photography is my creative outlet, specifically wildlife and nature photography. I have been focusing on wildlife of national parks. Nothing compares to being in wilderness photographing a newborn fawn frolicking or coyote hunting for a meal. Nice thing about wildlife photography, if I am feeling extra bad there are plenty of places to photograph wildlife from the comfort of a car. The days I don't leave the house, I turn up some music and spend time on the computer processing all the photos.

Have you talked to a electrophysiologist? I have found that many of the things they list in the records, that were not mentioned to me, are so small/minor to be insufficient to lead to any sort of conclusion. I have had all sorts of things show up on ekg, and I found that only a competent electrophysiologist was able to correctly interpret all the data.

Have you tried melatonin? I am sensitive to meds, so I just use over the counter sleep aids for short term. Ambien might be the most potent form of sleep aid. You must sleep after taking a dose, if your body fights going to sleep, or stay up to long after a dose, be prepared for vivid hallucinations (dreaming while awake!!!). If you normally get up in the middle of the night to use the bathroom, be prepared to use the bed instead (or the nearest corner!) Sorry, probably not what you wanted to hear. I am way sensitive to medications, so my experience might not be the norm. I would go with the safest, lightest dose, of sleep aid that works.

I have trouble with the amount of fluid they have recommended. Drinking that much causes me to need to go every 15 min. and that is unmanageable. I try to stay well hydrated, and use plenty of salt to absorb the fluids that I drink. Currently this means going every 30min or so. Even so, when out of the house I place a priority on figuring out were the nearest bathroom or acceptable tree is located (I am a guy : P). In situations when it is not possible to use the bathroom that much, the dilemma, do I cut fluids and dehydrate, or tempt fate?

Hoping to get some advice on how to prepare to see a new doctor? I switched to a new general physician, to discuses my recent "autonomic dysfunction" dx and the issues I am experiencing. The appointment is next week. This will be the first time I discuss dysautonomia with a doctor. What sort of questions do I ask? what should I bring up? any tips? One of my main goals is to get a referral to see a neurologist. I think I want to focus on the most bothersome of my issues to start. The midodrine greatly helps me during the day, but I am still having major issues with sleep and mornings. Even with the midodrine to perk me up, I get extremely nauseated in the morning. I cant eat anything for about 4-5 hours after waking. If I eat to soon after waking, I vomit it back up. I dont eat anything 4 hours before bed, so by the time I eat lunch the next day, I am extremely hungry and really feeling the effects. After lunch, the food combined with the midodrine makes me feel great! I understand most general physicians are not able to work miracles, I am just looking to make life a bit better! Not sure what sort of help or referrals I am looking for, but I don't want to mess up this appointment!

Thanks everyone for the advice and replies, I greatly appreciate it!

"RAVENOUS for food!" I haven't really been on midodrine long enough to notice any weight fluctuation, but it does make me very hungry! I cant eat in the morning (I vomit it back up) so I get awfully hungry by lunch time with the midodrine. I take 5mg twice a day

I was at Jackson Hole this past fall. Jackson is at 6000 feet, and MOST people will experience at least minor symptoms of the altitude if they are coming from sea level. Although the ski resorts are way higher then 6000 feet! It is a given that you will experience symptoms at altitude past 7000-8000. Most people start to really experience altitude sickness above 9000 feet. Some of the ski resorts out there go above 11,000 ft. You have never skied before and will be really exerting yourself trying to learn (normal for new people). You should also expect to fall frequently. This will be done at a higher altitude then your body is used to, meaning fatigue will set in really fast (normal for most people). Throw in your issues along with the normal response, and you are really setting yourself up for fainting and getting sick if you push yourself to hard. I started to feel the altitude going above 7000ft, and I live at 1500ft and routinely go to 3000. Camping in Yellowstone at 8000ft I was to dizzy to walk and had to retreat to Mammoth. I tried hiking above 9000ft and could only manage about ten feet before I was half delirious. It is not all bad though, and everyone reacts differently. It might be best to sleep at a lower altitude. If you decide to go, it is best to have a plan to retreat to a lower altitude if you start to get sick. Dont be afraid to go to first aid or flag someone down if you need oxygen! Although regardless if you experience problems or not, if skiing is not your thing, you might end up spending the whole trip in the lodge twittling your thumbs. I wouldn't pass up the trip and would take the risk (although I live for adventure). I am jealous, lol

Almost 30 and I got a full head of hair, long and shaggy Although I cant grow a beard, it comes in patchy and rather pathetic

During one of my EP visits, he warned me of the possibility of needing a ablation or pacemaker. I don't think I will need either, I came to the conclusion I would skip having the ablation and only consider it or a pacemaker if it was absolutely needed to save my life. I dont have a answer, just want to say I can relate. I have been trying to get back to exercising, and I have been experiencing a bunch of arrhythmia as a result. I only get tachy when standing (during a bp drop), and normally have a low bp (100/70 with midodrine) and low resting hr. I tend to experience arrhythmia at rest when my hr goes into the 40s. I am really interested to know the answer to your question!

I was diagnosed with disabilities at age 6. All threwout school I had at least some classes in special education, and this reminds you daily that you are different. Like most kids in these types of situations, I tried my best to fit in with the "normal" kids. The other kids are experts at finding weakness, so you try to brush everything under the carpet, and act as normal as possible. So when I became a adult, I really felt the need to go the extra mile to prove myself and tried my best to hide any weakness. Of course I didnt know I had autonomic dysfunction, and I ignored the symptoms for many years. Even if a doctor did tell me I had this, I would have ignored it. It wasn't till I started fainting numerous times a day, couldn't get out of bed, and spent two weeks in the hospital, that I realized something was wrong enough that I couldn't ignore it anymore. When I limit myself, I feel like "it" is winning, and I am weak because of that. Feeling weak sure is a blow to the self-esteem. To boost the self-esteem, I must push myself, but then I end up spending the next day unable to get out of bed. The brain sure is a funny thing, always tricking us.

Thanks! I will think about that all