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I tilt my bed. It helps tremendously. So much so that I take wood blocks to tilt beds when not at home. I tilt between 3 and 4 inches. Even with that, I tend to slip down the bed during the night. I'm afraid that for me, tilting 5 or more inches would find both me and my ocvers slipped totally off the bed by morning!

How do we tell if we're having a heart attack or it's just dysautonomia dysregulation? Last night I had severe left shoulder pain, clammy palms, great pain the heart area, white pallor, freezing cold. Clonazapam didn't remediate. Laying down didn't help. Lasted 2 hours. Although I finally did sleep, I still have it this morning. Last time, when i asked the doctor what to do in these events, he couldn't give a definitive answer. I am looking for practical advice. But...this has happened before. I refuse to go to ER because they either dismiss me as a nut-case or admit me in the stepdown unit only to find very low bp and irregular heartbeats. I already know this. Then I'm released. If I go to the doctor, what tests should I ask him to consider? If a similar thing happens to you, what do you do? How do you tell if it is a heart attack or just dysautonomia rearing it's ugly head when the clonazapam doesn't remediate the symptoms?

Like you, I can take NO vitamin pills because there are so many I cannot take - like C and E. My neuro (Chief of Neuro) said that B6 is a very powerful neuro vitamin, and while he did not prescribe it, he endorsed my taking it if it helps. B6 can be very hard on the liver, however, and taking too much can deplete the liver of a critical enzyme, causing problems. Yet large quantities of B6 are part of the protocol for those with high homocycsteine levels. A bio-available form of B6 is available for those taking larger quantities of B6 per day: P5P (pyridoxal-5-phosphate). By taking this form of B6, the liver is not harmed. It is slightly more expensive and sometimes hard to find. Health food stores usually carry it or can get it, as well as on-line places. Google P5P to find out more about it. I've been taking P5P for a long time, and it helps with my dysautonomia (POTS) issues. Chalk me up as one having a positive experience. I'm so sorry that you had the reaction. It's so hard to have a doctor recommend something only to find out it doesn't work or worse, brings on a reaction. I hope you can get this straightened out.

I live in Illinois, 15 miles south of the Wisconsin boarder. I, too, go to Froedtert and under the care of Dr. Jaradeh. My EP (also professor at Northwestern) really wants me to see Dr. Barboi because he has heard so many good things about him. Either way, Froedtert has an autonomic lab and is an enormous hospital complex. There have been times when I have seen the doctor, and he gets me in right after the appointment to have some test done in another department - when they have an opening. But, at least they try to do this - reminds me of my Mayo experience. So far I've had good experiences there.

I also go very slowly. When the physician recommends that I go on a med, I ask to get 1 month's worth AND I also ask "permission" to start low (cut the pill in half, etc) and work my way up. My doctors always endorses this protocol unless it is a capsule or enteric coated. Just a few days ago the doctor wanted to give me an adult epi-pen prescription. I appealed and asked for a pediatric pen because of sensitivity to meds, and she agreed - writing the prescription for multiple pens so that if the first pen is ineffective, I can do it again right away because two ped pens equals one adult pen. That way, I'm covered. Start slow. Increase if necessary. I have a great doctor!

My neuro recommended a (free) subscription to the periodical "Neurology Now." The May/June 2009 issue had an article about an amendment to the ADA law, effective January 1, 2009. "The Act defines 'disability' much more broadly than the courts had previously done...providing what it calls a 'non-exhaustive' list of major life activities, including caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, and thinking...any impairment that interferes with the 'major bodily systems or organs' (neurological, reproductive, digestive, respiratory, circulatory) is a covered disability. This means that people with these conditions - such as people with epilepsy or MS - no longer have to 'prove' they are sufficiently disabled before they can file a claim under the ADAAA...really helpful for people with neurological conditions...with disorders that are under episodic control, like epilepsy...There are many disabling conditions in neurology where that's the case, and the ADAAA [now] recognizes that." (Neurology Now, May/June 2009, page 35). The article also goes on to give advice on how to proceed if you are having neuro-related issues with your employer - such as requests for accommodations. Just wanted to pass along a little good news. And incidentally, you can sign up for the periodical on the internet if you're interested. It's free and intended to be a help for those of us who either have issues or are caretakers. neurologynow.com

A few nights ago I was tutoring a (fun) high school student when my throat started to close. I got up and within a 30 seconds I was in distress. Within the next few minutes my throat closed - I could not inhale. I am trained in Acupressure, and had the presence of mind to apply the hold for throat closings. The throat responded and opened before I passed out (and died?). The student watched the whole thing, dazed by the trauma unfolding before him. There were no mitigating circumstances to have provoked this reaction. It took over 2 days for the throat and voice box to fully recover. In addition, the next morning, the left side of my mouth was lazy. It wanted to stay closed if I spoke normally, so it looked like I was talking out of the right side of my mouth. (I was!) My doctor believes that it was probably not a TIA but rather an autonomic issue, particularly since I have other involvements with the nasal passage that are autonomically compromised. So I now have an epi-pen. She wanted to give me the adult pen, but agreed to my rebuttal for a pediatric pen - I am extremely sensitive to meds and I have cardiac rhythm/pulse issues. OK - so today I did a little "work" - not enough to even change my breathing. I didn't think my body would notice. But, now I'm in a reaction with a new involvement - my throat is threatening to misbehave. 1) Does anyone else deal with these issues? 2) Does anyone have any thoughts about what is going on? 3) Would Mestinon help? I have a prescription that the EP prescribed but the NEURO told me not to take. So confusing. 3) Does anyone have any suggestions? Once again, thanks for being here. You are all wonderful, and I owe so much of the quality of my life to this forum. For example, I just bought the Cool Vest. I would have never known such a thing existed, much less how to get one or even if it would be "reasonable" for dysautonomics to use. Thank you, thank you, thank you.

I have similar events to Ruekat but the frequency is only a few times per month. Had one yesterday. Usually my first sign is becoming very cold and the veins in my hands totally disappear - the color of the blue veins are not visible. That's how I know I'm headed to a possible reaction. At this point, I also cannot easily feel my pulse in the neck because it is so faint but my BP usually goes up. Doesn't make sense to me. I also have a difficult time thinking, and of course, don't want to do anything but sit reclined. I also have a difficult time breathing (don't want to inhale) and the nose is occluded - but not from the flu or cold. It just closes up. The ENT said that was an autonomic reaction. Anyway, if I don't do anything else, major shakes and jerks come and can last for several hours. However, my neuro gave me Klonapin for these episodes, and they have remediated them. I take just 1/2 of the lowest dose right when I become bone cold and the veins disappear. If I catch it soon enough, I avoid the shakes. But I still have brain fog and lethargy. The Klonapin usually takes about 20 minutes to work. I can tell when it kicks in because my breathing becomes more regular and not occluded. I don't understand anything, and I cannot determine a pattern or causation for these things. I'm so sorry you have to go through this.

I have been told by doctors based upon symptoms that I have low stomach acid, and could possibly benefit from betaine HCL with pepsin. So I tried a low dose right after a meal with meat. It worked. Many irritating symptoms that are not POTS/dysautonomia related were reduced! I've just been doing it a few days so i don't know about weight loss, but the betaine HCL has helped tremendously with hunger, bloating, digestion issues, and I don't crave eating right after eating. Before taking the betaine HCl, I did do some research and found that regulating the stomach HCl is an autonomic function somehow tied into the vegas nerve??? I'm not sure what all that is about - I just found it curious that HCl production is dependent in some ways on the autonomic system.

I am about 60 minutes south of Froedert - in Illinois - and my neuro is at Froedert - great place, but too far for a support group given current limitations.

I take it as needed. When I go into a reaction (difficult breathing, chest pain, etc), I take only a half dose (1/2 pill) this medicine remediates the symptoms. I am extremely thankful for it. "And with the suffering, He will make a way so that ye may be able to bear it." (a comforting promise)

At my appointment with the neuro yesterday, I told him that the EP thinks I might have variant angina (Prinzmetal) and that I'm now almost 24-7 housebound due to dysautonomic issues. He was insistent that I have a nuclear pharmacologic stress test to rule out CAD because women tend to be underdiagnosed for CAD. After some internet research, I couldn't find any info that said this test rules out CAD, and in fact, that it does not predict future heart attacks. It is only able to differentiate the difference of blood flow in the heart chambers but not the amount of blood flow in the heart chambers. QUESTION: What is/are the best test/s to evaluate CAD status in a patient? Is this a reasonable test? Any thoughts - I'm scheduled for the test tomorrow but I'm leaning toward rescheduling.

I am so sorry this happened to you. We try to do what's "right" and then get nasty ramifications. My doctor recommended that I not take vaccinations in general. What a surprise, however, to find that my daughter, who is "just fine" had issues as well. When she got her tetanus booster to go on a cruise, she got a mild version of mock lockjaw!!!! Call it what you want, but within 24 hours, she was running a fever, and couldn't open her mouth more than 1/2 inch. She had to see an oral surgeon who was clearly astounded at the reaction. It took about 1 week for her to be able to eat food, and about 6 months before the jaw finally settled down. As a result of her reaction, and she is "healthy", I decided not to take the vaccine when I had a rather nasty cut that sent me to Urgent Care. It's been over 15 years since I had the booster. Well, I'm still here BUT there were a few anxious weeks while we all waited to see how things would proceed. They were the most difficult weeks of all. So there you go. Take the vaccine and maybe have reactions. Don't take the vaccine and then when that inevitable cut comes, hope for the best while you wait it out. I'm so sorry you are dealing with this. I hope you are restored quickly, and...you are now protected for the next 10 years.

On several occasions I've had the doctor tell me one thing and tell the referring doctor something else. It's sad. I'm sorry it happened to you. I'm right now petitioning my neuro at Froedert (Milwaukee) to test me for PAF/MSA rather than do the routine POTS stuff. I just want answers like you. My guy is pretty knowledgeable although he is reticent to tell his patients the tough news. Look up his bio on the link below and see what you think. Froedert Hospital, Milwaukee, WI, Safwan Jaradeh. He's also chief of neurology and teaches at the Milwaukee School of Medicine (I think that's the name). http://www.froedtert.com/PatientInformatio...ile.htm?id=1613 Listed below are his specialties in the field of neurology: Neuromuscular Disease, Peripheral Neuropathies, Autonomic Disorders, Neuromuscular Pathology, Myasthenia Gravis, Electromyography (EMG), Neurogenetics Hope this helps.

I copied the following quote from the DINET entry on sweat testing. My doctor wants me to do a TST and QSART. I'm not wanting to do the TST for 1000 reasons. But if I could better understand what these words mean, perhaps I could be more willing... "Used in conjunction with the thermoregulatory sweat test, QSART can differentiate a pre- from postganglionic lesion (Low, 2003, 407-421)." (DINET). What does this differentiation tell us? What would we do with that information? Thanks for your help - as always, you are all wonderful! Cathy

Wow - the ER docs should read this post! There are lots of us who avoid the ER because of non-effective treatment for our condition. I never know what to do. In my case, if it is really bad, (maybe once or twice a year), I go to the ER, tell the triage nurse what I have and what is going on. She/he will do a BP, pulse, and blood ox. Then I sit in the waiting room until it passes. They always want me to go in, and I refuse. I tell them it's $1000+ to go through those double doors, and unless this episode develops into a full-fledged heart attack, there is nothing they can do over there except give me IV saline. And so I sit in the ER and wait it out - myoclonic jerking, hypothermic shivering, grey pallor from poor cardiac pumping, etc. Sometimes a compassionate nurse will give me a heated blanket. Otherwise, I sit until the critical stuff passes - usually 1-2 hours. And then quietly go home, relieved that the ER was avoided. But for the most part, I stay home and suffer through the scary episodes, quietly, doing all the stuff we do when in a crisis. Bottom line - each of us has to make the best decision for each event and keep our physicians apprised of our events so they can monitor our overall cardiac/neurologic health. I liked what Melissa (Sunfish) said: "now....of course i realize that many people have the fear that their life is truly in danger & go for that very reason, but one good guideline (most of the time) is if you've been dealing with a certain symptom repeatedly, there is very little chance that all of a sudden it will be dangerous when it never has been before. this is even more true if it's something that has been evaluated &/or discussed with a doctor. obviously there are exceptions to this rule, as there are to most rules, but i'm sure you get my point." I just had a workup with my Electrophysiologist (cardiac specialist) and when I asked him for advice, he basically said the same thing as Melissa. And he also added that there are no certainties with us. There are no simple formulas. Which leads me to prayer.

I became a widow when my husband died in an accident. My children don't want to be orphans so they have a hard time "seeing" my limitations. We have no extended family within 500 (?) miles. My source and confidence is in the Lord Jesus Christ, and Him alone. He has proven faithful, merciful, and gracious over and over as I have endured some rather harrowing events - including doctor-induced septicemia and peritonitis leaving me 11 days in ICU. But Jesus is faithful, providing amazing blessing and presence even through the difficult experiences. Life is hard. Without Him, life would be impossible, at least for me. And through Him, I am still able to continue to tutor students in my home with an upbeat attitude and give heartfelt encouragement to my students. "Whom have I in Heaven but Thee. And there is none upon earth I desire besides Thee. My heart and my flesh faileth. But God is the strength of my heart, and my portion forever."

In my very limited knowledge of dysautonomia and POTS, and like Ami (Willows), I don't see any reason to retest what we already know. I, too, am being asked to do the two sweat tests (QSAT and TST) and cardio tests (Valsalva and tilt) because of recent deteriorations. However, I don't want to do them because of the after-effects. Are these tests so precise that they can fine-tune treatment because it took 16 minutes to blackout instead of the former 27 minutes? Anyone have any advice? When are the follow-up tests beneficial to the patient? Please, if anyone can add insight, those of us in line for retesting need your voice. And Ami - thanks for your post. I've been wanting to ask this for a long time. Your response about the genes was brilliant and irrefutable. Great job!! To add to this topic of retesting, don't we all have variable test results - we're highly reactive for a period and then not so much. If this is true, then doing multiple testings to see progressive deterioration would not be conclusive IF they ended up testing on a "good" day - and these test dates are made weeks in advance so you cannot anticipate what your dysautonomic function level will be on the day of the test. Anyway, I think "benchmark" or "trying to find a pattern" reason for testing is invalid. These tests are too costly to us as patients, and parenthetically, to our insurance, for those of us who are covered.

Thanks for this post. I agree. I am certain that the quality of my life is better because of the posts and research capabilities not only of DINET but also of those who post through DINET's forum. You are all amazing, and I am so thankful for all of you. Thank you, volunteers, for all the work you contribute to DINET. You are reaching and helping far more people than you could ever imagine. There is no forum as kind, compassionate, and helpful as DINET. You are great moderators. And thanks to all the other volunteers behind the scenes who write and edit newsletters, maintain resource lists, etc. Thank you, thank you.

I picked up a few 3-foot branches weighing less than 5 pounds total and carried them 80 feet to the curb. Halfway there, I was breathing as if I had just sprinted 100 yards. This sounds like POTS except my pulse never went higher than 100 pbm and the pulse was extremely weak. There was no serious angina (only a baby elephant sitting on the chest). I continued to pant and feel extremely weak for the next 10 minutes. I had to slowly walk around the room to keep from feeling like I was going to pass out. The pulse remained weak as well. I have an appt with a cardiac specialist tomorrow. I anticipate that he'll dismiss it yet he is an outstanding physician, just with only 1-2 POTs patients. He's very open to input and options. Any thoughts to give him? What is going on? Does this happen to you? Thanks - Cathy

That was an amazing video. It was so encouraging - as it was the first time I have "seen" another person that has what I have! You are amazing! Sincere and heartfelt thanks.

Last time I was in the hospital, one of my middle-of-the-night readings was 60/40. I've had this reading before, so I wasn't alarmed. But the gal that took the reading didn't like it, so she wrote down that the reading was 80/60 despite my assurance that 60/40 was ok and that she should record what she got. I was kindof upset about her falsifying the reading, but what are you going to do? Life is hard.

I, too, smell smoke from time to time, and like you, there were times when I woke my husband or sent my children on wild goose chases - trying to find the source of my smelling smoke. The smell was that pronounced and always came on suddenly. And so...the doctor was concerned. He had me tested for seizures by doing a 8-hour (?) seizure study. I had to stay awake at home for 24 hours, and then they put me in this special hospital room. I layed on a bed in pajamas and for 8 hours (?) they ran a multitude of tests for seizures. Eventually they provoked the smoke smell, which was really exciting. The results - the brain showed NOTHING abnormal! Conclusion: based on the test results for me, a dysfunction resulting from the dysautonomia.

I also cannot take a B-complex vitamin as much as I want to. At least one of the B's hiding in there brings on extremely bad stuff. But I do take B12 shots, folic acid, and P5P (bioavailable B6) - which help tremendously. I've been told that sublingual B12 is the best alternative if shots are not an option. Of the B12 subs, I've been told that methycobalamine is more bioavailable than cynocobalamine, the less expensive compound which is also the more common one.

My first line of defense is folic acid and "B6". If that doesn't give relief within 20 minutes, I take clonazapam - 1/2 tab. I don't know why these two protocols work. My neuro endorses this course of action, but I don't really know why or if it's the best. I am very thankful that the P5P works most of the time - especially if I catch it as soon as the reaction starts. NOTE: I do not take B6 but P5P - a bioavailable B6 that does not deplete the liver enzymes like B6 does. P5P is only available at full-line vitamin stores and many stores don't carry it because P5P is not widely known. (It was one of my doctors that put me on it.) Thanks for this post. I'm going to try the breathing, too, as well as the head and arm approach. I'm so thankful for Dinet and all of you. My quality of life is so much better because of the posts and research sites. Thank you!!!