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I'd check with Richard Bernstein, MD. He is also an engineer and researcher, applying engineering techniques to chart sugar swings based on food and meds. I've called his number and actually talked with Dr. Bernstein. Don't know if he can help or if he is still available, but I do like his philosophy of medicine. www.diabetes-solution.net Hope this helps.

I'm not sure if this is related or not but... When I go into a reaction, sometimes my nasal passages occlude - as if I had a cold - and it is very difficult to breathe through the nose. As I'm coming out of the reaction, my nose "clears up" but there is no drainage. It just opens up on its own. I asked my ENT what's going on. While he said he'd never heard of a patient complaint like that (he's in his 60's and an award-winning ENT), he did add that there is a part of the nose anatomy that is controlled by the autonomic system. He felt it was reasonable for these episodes to occur given my dysautonomia issues.

I relate to almost everything. I too have been maligned by physicians and have learned to feel them out and mirror the vocab and phraseology to fit their definition of how a patient should communicate. And if I have to play this game, I don't return. Now when I see a new physician, I always give them a brief bio and then ask, "Would you like me as a patient or should I go elsewhere?" Of course they always say to stay, but based on how they answer (a role reversal in evaluating vocab and phraseology and body language) I decide to reschedule or go elsewhere based on the physician's response. I'm too sick to play games with the doctor. Either we communicate openly and intelligently or I'll cower someplace else, where I can at least hold a mutually respectful exchange of thought with the highly specialized person I've hired to think and respond to my medical condition. Yes, the patient hires the doctor...an interesting perspective I was coached to accept. I've got great doctors right now. Yea. And...for the record, I was so happy back in the days when my medical knowledge could be summed up in one word: none! Those were the good ol' days.

Recently I had a critical situation that needed medical intervention. I called my wonderful PCP, and the nurse told me I had to go to Urgent Care because they couldn't handle "that type of medical need" in the office. Several hundred dollars later, I was sitting in the PCP's office for a follow-up to the Urgent Care visit. When she found out that I had called the office for an appointment (and even looked up on the computer tracking system to see which nurse I talked with) she was very upset. Not only could she have handled "that type of medical need" in the office, but she could have also attended to the spin-off consequences of that medical need. To circumvent the phone relay system hosted by computer voice 342 offering numerous multiple choice options, I now simply fax my concerns to the PCP office directly. It is very efficient, they have a paper record, there is no third-part interpretation of "what I said", and the doctor can simply jot a note to the nurse on how to respond to me without great time involvement on her part. It's been a great solution.

I take Royal Jelly on an infrequent basis. I don't know if it helps with energy but it does help when I'm craving sweets to eliminate the crave. I take less than 1/2 teaspoon - not much. Also, I take LOTS of Omega 3's, and they have helped with little issues, including brain fog. It's still like London around here, but before the Omega 3's, it was a rain forest. I get Nordic Naturals "Ultimate Omega Liquid", 1/2 tsp per day (on days that I remember). I buy it slightly discounted from Lucky Vitamin (whoever they are - on the internet).

I was another "in great shape" person, powerwalking, bicycling, wearing a size 8 and really fit. I miss it a lot - actually both the size 8 and the really fit.

Two days ago I cut my finger on a kitchen knife - deep. I bandaged it and it seemed to be healing. Last night infection set in (throbbing great pain and extreme tenderness) deep in the finger, not at the surface. The Urgent Care physician prescribed Cephalexin and Bactrim to be taken concurrently for 7 days. X-rays revealed that the bone was not chipped. The last time I had a tetanus booster was over 14 years ago. The MD looked at my condition and said the call was mine to make. With autoimmune dysautonomia, POTS, and chemical sensitivities, she didn't want to recommend anything. As an aside, my daughter had a severe reaction to the tetanus shot (administered so she could go abroad) - it actually partially locked her jaw - the oral surgeon validated that the jaw was inflamed when she was referred to him for a consult. Any advise? My regular physician will not make a recommendation either. I'm winging this one alone, not by choice. Any help would be most appreciated.

Going out on a limb here... Mayo suggested biofeedback for me but I never went down that road. At the time, I was a lacto-ovo organic vegetarian trying desparately to figure out what was wrong with me and doing the best I could to not deteriorate any further. Adding biofeedback was just too much with everything else going on. Last January, my physician said the only hope for me was acupuncture. Coincidentally the next month, an acquaintance heard about my condition and offered (free) to do TKM, a type of manual acupuncture in which you place your hands on certain meridians to relieve "congestion". It's helped. After she administered TKM almost daily for 3 months (no charge), I went to Ohio to get training so I could continue the therapy. I now do it on myself and see results. In fact, I have three friends come for 60 minutes/time (3 different days) to do it to me also. If you want to know more, please contact me but not at my e-mail address because that address is now used by other family members.

Melissa - Thank you so much for opening your heart and life to those of us on Dinet. These days "I do not exercise myself in great matters or in things too high for me" (Psalm 131) as a result of the dysautonomia so I cannot offer any great wisdom or encouragement. I, like others, know the desperation of living with uncertainties - and I am so sorry that you are having to experience this so intimately right now. I shall be praying for you. May the source of the sepsis be identified and effectively treated, and may you will find comfort in all the sincere friends here in Dinet who truly value you. May God be with you, and may you have compassionate and knowledgeable nurses to attend to your needs. God bless you, dear one. You are deeply loved by us, by your parents, by many many others, and by God. CT

I'm so sorry the physician seems so self-absorbed and distant. He walked out of the room when you said you were symptomatic! That's taking "do no harm" to a new level. But God is so much greater than all that. You got the recording and now you can go forward. Congratulations. May you now begin a new journey to get relief and your life back. Your rhythm is documented! Yea. God bless you, dear one.

I can dance ... with my eyes closed, laying in bed, surrounded by terrific music, wearing great clothes, and really happy. It's hard to want to do something really badly and not be able to do it because of something beyond our control. Life is hard.

I've been on B12 injections (self-inject) since around 1996. This year I skipped about 4 months. After figuring out that I was getting so tired that I was taking spot naps and becomes a zombie, I remembered I stopped B12. Back on them, and doing much better. Prescribed by neuro for dysautonomia etc. Also, because I am now reacting to the shots, I have to break up the shot into 1/2 dose 2x/month so I don't get so wiped out. The split dose works better for me.

I just came from an IEP meeting as a family advocate. This post has done two things for me. It has confirmed that I may be just a "normal dysautonomic" because asking a question to the group this morning was so symptomatically challenging. And this post has made me sad. Yet another proof of this condition. But there is always good news. My family and friends haven't called me Chatty Cathy for quite a while.

Melissa - You've been through so much more than we can imagine, and you have such a great attitude. You're an inspiration to all of us. I will be praying for you. Cathy

My (really wonderful) MD prescribed mestinon because it might help with some of the issues (but specifically breathing issues weren't addressed). You know how you're in the office and the physician goes down a path you weren't expecting - and you're in a brain fog - and trying to process this new information - and still having symptoms while in the office that are distracting your concentration - and...haven't we all been there? Well, now that I'm settled, I have a question - anyone who can shed some light based on their own personal experience would be most helpful. I have great difficulty breathing. Just don't want to inhale or exhale. I'm content with a respiration rate of anywhere from 5 to 10 per minute. Did/does the mestinon help any of you breathe better? (Oh, my breathing difficulty is part of the "syndrome" of POTS or dysautonomia - not from another disease or condition.) I don't want to call his office because he is an amazingly busy physician, and he spent almost an hour with me - just out of kindness and concern - Thanks -

And POTS: People Opposed to Standing

I have reactive hypoglycemia, which is also (I'm told) called glucose intolerance. It took 3 separate glucose tolerance tests to finally diagnose it - the last one recording data for over 7 hours. When I met with the doctor to discuss it, he was so excited that the extended test "worked" that he only told me to "watch my sugars" - which I did with every bite of brownie. Two years later, in the process of trying to help another chronically ill friend, we stumbled across reactive hypoglycemia. I have since been following a very restrictive diet and have had great results in the lessening of debilitating symptoms related to this particular condition. The book that delineates the diet is called DIABETES SOLUTION by Richard Bernstein. A casual presentation of what goes on with glucose intolerance is at the website listed below. I know I've chatted beyond the scope of your post, and it's probably because I wanted to finally verbalize my frustration at having lived with this condition, aided and abetted by wrongful eating all because diet wasn't addressed. Regardless, I hope you have good medical help to direct you in how to best proceed now that you have a diagnosis. http://www.opinions3.com/reactive_hypoglycemia.htm Thanks for your post. It's another confirmation that I'm experiencing similar things to others with dysautonomia/pots, and that it is not out of the "norm" for us, maybe. (Can anything be absolutely definiitive about us?) (I wrote another post, but it got lost somewhere in my computer or cyberspace...Hope two of my verbose posts don't get posted!!!)

You know you have dysautonomia when you ... ... accidently drop something you were getting, look down at it, say "Rest in peace," and slowly walk away. ... try to figure out if you can take a shower today and can't remember your decision ... 3 days' worth of newspapers accumulate at the foot of the driveway and you are not on vacation

"But Megan, like most kids with POTS, is slowly growing out of it, and she's finally got enough energy to play...Medication didn't help Megan, so she's stuck waiting it out until she's 20 or 21. But aerobic exercise and a special diet do seem to reduce some symptoms." Mayo Clinic POT Syndrom (POTS), script, March 29, 2007. There it is.

Ok, so I'm asleep at the flippers - and replying 5 months after your post. Yep, I home schooled my children K-12 and they went on to college. My daughter graduated cum laude in December, and my son is a junior in the honors program. So it can work. I was undiagnosed but very compromised almost all the time. Things got a little more complicated when my husband died by an accident when the children were 15 and 18. But we continued on, and HSLDA supported our educational goal - to continue home education - tremendous organization. I currently privately tutor from my home - and am very successful in helping children become indedpendent and engaged learners. It's lots of fun. I really miss the home education environment, and tutoring helps.

Great idea but I can't travel too far... I love 30+ miles N of Chicago, near Great America and Gurnee Mills.

Thanks so much for asking this question. I can relate to your quandry. Today, while trying to find some answers for myself, I bit the bullet and researched Multiple System Atrophy. There is a very informatiive article regarding dysautonomia and how it negatively impacts the body by system (gastro, urinary, cardiac, etc). It was really helpful. They said things in there that I've not read elsewhere, and vindicated many of the symptoms which physicians have said are "most unusual." You might want to try it. http://jnnp.bmjjournals.com/cgi/content/fu...4/suppl_3/iii31 "Autonomic diseases: clinical features and laboratory evaluation" I used an online medical dictionary to get through some of the jargon.

Klonopin is spelled numerous ways. It's ten-penny name is "clonazepam" and from what I can determine from past posts, most take either 0.5mg or 0.25mg per day. I was prescribed 0.5mg but becuase I over-react to everything, I'll start with half that and see if it works... Icthus

Yesterday, my EP prescribed Klonopin for the anxiety that I feel from 3pm to about 4 am every night. It is somewhat low-grade, but it lures me into nervous eating and wakefulness almost all night. I also probably have generalized anxiety disorder (GAD). My internist prescribed Lexipro for the anxiety. While I am not real depressed, I probably have GAD and the seratonin is "good" for dysautonomia. Both said I could go either way. My concern that has not been addressed: my heart stopped on Wednesday (the EP knows about that) and I'm concerned especially that the Klonopin will slow things down further. But the EP things all the dysrhythymias would be reduced with the Klonopin. The catch: when the EP prescribed the Klonopin, he gave me a lengthly explanation about how the Klonopin is an SSRI and would be of great benefit to the autonomic issues in general. (Klonopin is not an SSRI; Lexapro is - but he only spoke of Klonopin.) I have both drugs sitting next to my bed waiting for the next move. Where do I go from here? Klonopin or Lexapro? Any advice?