seattle chris

The Cleveland Clinic recommends a 5g sodium diet for autonomic disorder patients. On the other hand, there is a widely distributed paper by several Mayo doctors that recommends 10-20g per day. I tried the high end of the spectrum and was taking 9 1g sodium chloride tablets daily in addition to salt loading my food. My urine test showed that my output was more than 2x the max, so I cut back to 5x daily. Based on recent bouts with high blood pressure and preliminary blood volume test results that indicated my blood volume was 25% higher than normal, I am cutting back even more (I will post my recent testing results in another thread). Recommended intake is probably a trial and error process as results can vary considerably from person to person. As far as hydration, I second the Nuun recommendation. They don't have sugar and are portable. I bought some online from Super Supplements and they had a variety of flavors on clearance if you are looking to save a few dollars. In addition, I start the day with a Propel drink mixed with a sodium tab.

I started Midodrine about a month ago (5mg) and I have been taking Atenolol for years (now at 50mg). The Mididrone has moderately to slightly helped my symptoms and I would like to take a higher dose of Midodrine but my hr has been as low as 39 so I am kind of stuck with the current dose. One thing both meds have in common is that they can lower your heart rate.

My neurologist at UW also mentioned Dr Thyerlie as an expert in this area and has spoken with her about my condition. Perhaps you will luck out with a mild summer. Two years ago most of the summer was damp and cool, with only about two weeks of what I consider summer weather. Last summer was much warmer and sunnier. My first summer here (2008) it was unusually warm and we went more than an month without precipitation. As others have mentioned, most residences don't have AC so you may want to search for this or think about buying a window unit.

Sorry to hear about your issues. I have also felt short of breath recently but it is pretty much isolated in my head as it just feels like I am not getting enough oxygen. I bought a pulse oximeter and it reads normal though.

Akgirl - The frustrating thing was that I didn't receive much feedback from on my horrific symptoms. The test results indicated mild sympathetic dysfunction (based on heart rate and blood pressure), but nothing was recorded regarding my symptoms (how I felt). The physician thought I was crazy when I grabbed my head but wasn't overly concerned as the vital signs didn't indicate anything concerning. My doctor didn't know I had these feelings and didn't have much commentary when I explained the issue. I made a trip to the Cleveland Clinic last week and the doctor didn't have much feedback regarding this either. I am having some other testing done next month so perhaps some kind of clues will be revealed (but I am not getting my hopes up).

The deep breathing test I did during my last round of autonomic testing was disastrous. I felt light headed and upon recovery thought my head was going to explode. One of the worst things I have ever gone through.

Does anyone have a recommendation for a high quality bed/pillow wedge (for one person)? I keep receiving the recommendation from physicians that I should elevate the head of my bed. The issue is that we have a huge wooden bed frame that makes this a project. In addition, I would prefer to look for a solution that wouldn't affect my wife as I don't think she is keen to sleep at an angle. Any suggestions would be appreciated.

I definitely had the same type of issues. I tend to eventually fall asleep though.I would recommend an appointment with the sleep center at Swedish Issaquah (I saw Dr. Zoroufy).

How much did it cost, if you don't mind me asking? Is that something insurance would help cover (if you know)? My test cost $386 out of pocket but the price will vary greatly based on insurance coverage and provider negotiated rates.

Have you tried a different mask? I went with one that has nasal pillows and it doesn't seem to be as intense pressure as the other type mask. And I don't get claustrophobia as bad. I like it better. I have to sleep reclined with it too. I just prop a lot of pillows under me. I've tried not using it and it does make a difference with how I feel and my POTS. Issie I should probably give it another try as it will probably help my symptoms to some degree. I may try adjusting the flow strength first. I have the nasal pillows but I was getting cold sores.

I was in the high Sierras last September. I didn't have any major problems the first few days, even at 10,000 feet. However, the fourth day I was miserable. We were driving and encountered many fluctuations in altitude. I felt disoriented and short of breath. I felt significantly better once we returned to about 2,000 feet. Altitude issues tended to fluctuate for me. I went hiking in Peru at very high altitudes, but then got altitude sickness in Ecuador a few years later and spent most of my time in bed with a crushing headache. I long to improve enough to ski again. I live less than an hour from the slopes and my prepurchased ski tickets went to waste this year. FYI - I don't officially have POTS but have similar symptoms.

Sorry to hear about this. Hope you have a better week ahead.....

Same story with me. My blood pressure spiked after starting florinef (but not heart rate as I am taking a beta blocker), and I had nasty headaches for a couple of weeks.

I have done two tests on meds (beta blocker, florinef) and one off. The test off the meds was miserable (felt crappy going into the testing room) for me but it yielded valuable information - indicated that I probably don't have POTS, neurocardiogenic syncope or a baroreflex failure.

I have had three sleep studies. The facility where I had my last test was quite nice but it is hard for me to sleep soundly with all the equipment hooked up. The test captures a whole sort of data including sleep stages, apnea events, oximetry, heart rate and limb movements. They provided me some pretty good information and found that I stop breathing quite a few times during sleep (but fortunately my O2 levels didn't decline much). They gave me a CPAP machine but I have had difficulty using it due to the pressure I get in my head. At a minimum, I try and avoid sleeping on my back to prevent apnea episodes. I would recommend taking it if the cost is acceptable.

Thanks for sharing this. My doctor just discussed potential autoimmune issues with me today.

I recently took another tilt table test preceded by a valsalva and deep breathing test. This time I was off my atenolol and florinef for more than two days as the doctor thought it may have skewed my prior test results. I felt fairly weak going in, possibly due to withdrawal from the meds. During my previous test I had no problems with the breathing exercises. This time was another matter though. I felt weak and struggled with the deep breathing. When I took the valsalva however, I was miserable. I couldn't blow for very long the first time. The technician allowed me to wait 15-20 minutes before trying again. During the second reading, I was able to blow for 15 seconds but on recovery I felt like my head was going to explode and I grabbed my head and almost rolled off the table in a complete reflex mode. It was probably the worst feeling I have ever experienced. Somehow, I kind of recovered and grudgingly agreed to the tilt table test. Surprisingly, I was able to last 13 minutes after almost asking to stop immediately after the tilt. I had a lightheaded feeling the entire time like I was going to pass out any moment but managed to stay conscious. I also felt a weird kind of pins and needles feeling in my face and my hands and feet felt numb. The tech indicated that my heart rate went to 157 at one point and my blood pressure fluctuated all over the place during the test. She finally stopped the test when by blood pressure dropped below 90/50 (or to stop the torture for me). Has anyone had a similar experience with the breathing test? This was a piece of cake for me last time but I could barely tolerate it this time. The head sensations I get makes me wonder if I have something serious going on beyond POTS or dysautonomia. Any thoughts would be appreciated.

Does anyone know where to obtain a copy of the program? Or is it tailored to each person, necessitating a call to Dr. Levine?

I generally feel weak in the morning, best in the afternoon, and have nasty headaches/pressure later in the day. My sleep is variable - sometimes I have a "decent" night sleep, while at other times I wake up feeling like I am going to faint.

I do cardio on the elliptical, stair climber and stair master. I also put my road bike on an indoor trainer in the garage (had just bought the bike before the onset of my symptoms last summer). For hydration, I drink plenty of water with Nuun tablets, and sometimes an added tablet of sodium chloride. I typically limit my routine to 30 minutes as I get real fatigued beyond that point and see diminishing returns. I also lift weights several times a week and use a combination of free weights and weight machines, but have eliminated lay flat routines such as bench press as I felt real disoriented after trying these. In most cases I feel physically and mentally better after my workouts. I used to run, hike and ski extensively, but have had to stop these activities. I have hope that someday I may able to resume these activities again.

I had real problems when I was at altitude last fall in California. We went to Yosemite and I didn't have any severe issues, but we went to King's Canyon & Sequoia and I felt like I was on my death bed. The altitude there ranged from 4,000 to 6,500 feet. I had tremors, felt short of breath and was almost in a state of stupor as I felt like I was slurring my words. My symptoms got better (back to my normal crappy feeling) once we descended to around 2,000 feet. Not sure why I didn't feel as bad in Yosemite as we were at altitudes of close to 10,000 feet. I have felt bad with low barometric pressure, but haven't yet determined whether there is a true pattern for me.

I had both five years ago as I have had a history of extra heart beats/PVCs and family history of cardiovascular disease. The MRI was negative but the CT showed a buildup of fatty acids in a critical part of my coronary artery. The buildup wasn't deemed to be of immediate danger, but it was a sign that I should watch my diet as the buildup would only worsen with age. There was/is also a low risk that the cholesterol plaque could rupture and cause a blood clot or heart attack. One issue was that there isn't enough data to know the associated risk factor this level of buildup (i.e., my result could be indicative of the average person's reading at my age). I was already an exercise fanatic, but I switched to a vegetarian diet after the test per the doctor's recommendation (although I have received conflicting advice on the pros/cons of a vegan or vegetarian diet). Given the results, the doctor recommended I follow up with another CT every five years (no less given the test's radiation exposure). My already low cholesterol levels are now very low, which has led at least one nutritionist to advise that I increase my cholesterol levels (all other blood tests were positive) but I doubt my cardiologist would agree. I don't think any of this information had any impact on my subsequent dysautonomia issues. By the way, the tests weren't that bad to cope with (not nearly as bad as the tilt table test).

I have been involved in the organization of a couple of runs. Good luck with planning the event. Sometimes it takes a few years for these runs to gain mass popularity, but it is essential that the event is well organized so that early participants spread the word. This same idea has crossed my mind a couple of times over the past few months. Unfortunately I have stopped running but have hope that I will be able to do shorter runs again.

I am on a salt loading diet and currently take 9 grams of sodium chloride tabs and am on .1mg florinef. I haven't had any relief of symptoms, but I honestly don't know if I would be worse without all the salt. Additionally, I have not yet been tested to see whether my blood volume is normal.

I have also experienced this sensation. It is one of the worst symptoms I have had to deal with thus far. I am taking florinef and atenolol.