firewatcher

I take Allegra 180 with no problems at all. I take it at night, but it does not make me sleepy, but then there is not much that makes me sleepy. My Dad is a Pharmacist and he and my allergist both recommended Allegra because it has very few if any CNS effects.

Just out of curiosity, what do you call "extremely bad stuff?"

I was on Inderal (20mg 2Xday) until my HR started dipping into the low 40's before bed (awake and semi-upright) . I check my BP nightly since my husband and I play dueling BPcuffs: he has high BP and mine is just screwed up. My GP doc suggested dropping the night time dose altogether since my "normal" sleeping heart rate was in the 40's to begin with. I have done that since with no ill effects other than tachycardia when I wake up and get out of bed. Inderal has a half-life of about 12 hours, so if he takes it 14-15 hours before bed, it should be out of his system before sleep. I would also echo Rachel and go with what makes him feel better. Good luck, my docs are dueling too, they are just arguing over lab results. It would be fun to watch if it was not my health they were playing with.

Yes, it definitely has helped me, I can have a sinus infection and not feel it! I don't know if that is good or not. I find that the more salt I use the better the shrinkage of the nasal membranes. I also go to stage 2 neti, where I suck the water back through the nose and let it drain out the mouth. The increased suction really pulls out the goo and gets the higher nasal passages near the back of the nose. My neti pot came with a CD rom that explained how to do all three neti stages. It has been a true blessing to me for over five years now and I highly recommend it over drugs! Jennifer

Swings, oh no swings! I used to LOVE swinging as a child, but when all this started I took my boys to the playground and I got on a swing...I'm surprised that I did not throw up and pass out. I guess it was the negative pressure pulling the blood out of my head, but it was awful! I used to like roller coasters too, same thing.

Sounds like catecholamines, I shiver really easily and my endo said that I was hypersensitive to catecholamines. I vaguely remember an article that implicates them in nausea as well. β1-adrenoceptors are the most important adrenoceptors in the heart, where they mediate increase in heart rate and force. They relax gut smooth muscle, cause breakdown of fat, and cause amylase secretion from salivary glands. On nerve endings, they increase transmitter release. β2-adrenoceptors are on smooth muscle, including blood vessels, bronchioles, uterus, bladder, and the iris, where they mediate relaxation. They cause tremor in skeletal muscle (shivering) and the breakdown of glycogen in the liver to release glucose into the blood, and decrease histamine release from mast cells.

HI! The watches that don't have the chest strap don't work as well. They are notoriously inaccurate to begin with, and the chest strap is not uncomfortable. I looked into many and finally got a bottom of the line armitron off ebay for $15 (shipping included.) I know, I'm cheap! I did not even know if it would work for me, but it tracks my tachycardia and bradycardia really well, just no memory. For an accurate investment, the Polar F6 (I think) is the best bet. Some of them even have a port to put into your computer and will give you graphs and averages. If the docs can't find the pulse in my wrist, I was not going to rely on a watch! Let us know what you get! Jennifer

Good for you! ( I hope ) Do you get really sore muscles from the weights, I mean for days? I've tried to work out lightly with weights and I feel it for days after! I don't remember it hurting this bad before. Keep us posted on how it is going.

HI, motion sickness is extremely common in migraine sufferers. I have always had BAD motion sickness, can't read in cars (have to look out the window) and forget boats! I'm betting it's an ANS thing too.

Can we start now and contact Mr. Page about next year's chronic illness week? If he could do interviews or something or we could get a reporter to start now on a story. Does anyone know CNN's Dr. Guptah? We could organize a "faint in" since none of us can picket!

1. Jennifer 2. 36 3. No official dx, pending dx of Autonomic and peripheral neuropathy, Partial Diabetes Insipidus, POTS?, unknown endocrine issues 4. 36 5. Georgia, Atlanta area 6. Incapacitating migraines, tremor, hallucinations, brainfog, tachycardia, narrow pulse pressure, dizziness, nausea 7. Tachycardia, exercise intolerance, fatigue, daily headache 8. Too long to list 9. dDAVP, Inderal and Klonopin

In defense of Ana and anyone else who looks at "alternative" therapies, I have to say WHOAAAA! Could this be dangerous? YES! But if you told a cancer patient 50 years ago "We are going to give you chemicals to bring you to the brink of death because the cancer cells will die before the healthy cells, and then stop just before we kill you..." and no one did it, there would be no successful chemotherapy. This guy is NOT a medical doctor, but that does not mean that he does not hold a piece of the puzzle. ALL of us should be under medical supervision and not self treating and diagnosing, but let's face it, how many doctors know SQUAT about dysautonomia? Even the ANS docs don't really know what is going on. If we had a known and treatable disease, there would be no need of this forum. Sorry, if I'm quick tempered on this one, but I'm just looking for answers, just like the rest of you. Jennifer

Yup, I was on dDAVP and it helped tremendously. It was the only time my labs came back normal for kidney function and hematocrit, but then my electrolytes got all screwed up and they took me off. My concern is permanent kidney damage leading to shut down due to chronic lack of blood flow. So I am asking all you "gotta go" people how your renal function tests come back: GFR, BUN and creatinine?

Hi everyone, Some of us have the frequent urination thing, have any of you had abnormal kidney function tests from the chronic dehydration? What is your Glomerular Filtration Rate or serum creatinine? Do they show kidney damage due to the lack of perfusion to the kidneys? Going back through my labs I keep seeing low GFR and high creatinine as well as the constantly elevated hematocrit. All this has been dismissed as dehydration (like I can hold onto anything I drink long enough for it to reach my bloodstream ) The docs are still arguing over the Diabetes Insipidus thing, so I'm stuck. Is this a common finding with all of you with polyuria? What have your labs shown?

My doc keeps telling me that we are on the cusp of knowledge when it comes to the information that we have on all this. POTS is still such a "new" official diagnosis that they really don't know all the ins and outs about it and how it impacts the rest of the systems. He keeps telling me to read and wait and as the answers emerge a clearer understanding and better treatment will follow. Sorry, that does not help much.

Prayers and hugs coming your way, please hold on! Jennifer

I too have speed-read through the literature and have LOTS of questions. He may be onto a piece of the puzzle, but the answers are not definitive and it is all too new to be sure of anything. I am giving my doc a link to all this and see what he thinks (He's into alternative therapies, just with caution.)

Interesting, here is way more info about it: http://bacteriality.com/about-the-mp/

JOhn, my slurring gets MUCH worse during and after exercise. My BP gets really narrow and that is when the slurring is bad.

John, I get slurring when my symptoms are bad, light-headed etc.. If I stand in one place too long or overexert myself, my husband says that it sounds like I am drunk. Sit down or do one of the faint countermanuvers to get more blood to your head. Yes, it is ******* annoying.

I almost always fax my doctors. That way they have a hard copy of the "conversation" in my chart and it usually goes via computer directly to the doc (like test results.) It also eliminates the "he said, she said" and there is no miscommunication.

Thanks Julie, I know that B-12 deficiency is pernicious anemia, which is REALLY nasty and can do all the things that I experienced, but that was the first thing my doc checked for and I am not even slightly deficient in B-12! Lack of B's can screw with the nervous system but I can't ever find anything on "overdose" and I've been told that since they are water soluble you can't overdose on them. I did not know if anyone had strange reactions to B's or what they would do to someone (like me) who's nervous system seems to be wired funny.

HI Everyone, I was reading the Red Bull Topic and am now wondering what B vitamins have to do with the ANS. I had some really strange reactions (severe unwarranted depression, hallucinations and complete brain fog) when I took them and am wondering if they could have caused all the screwy things that happened (especially since the screwy things stopped when I stopped taking them.) I know they are essential for proper nerve function, but do they do something different for dysautonomia? Does anyone have any info on B's?

Sue, while you are there, have them do an orthostatic BP/HR on you while you stand so that you have the numbers from your base and the progression (don't let them balk, just have them leave the pulse ox meter on your finger.) If you get really tachy and a catecholamine surge you'll have two more dots to connect. You may not have a pheo, there are other adrenal tumors that may or may not secrete anything. Good luck! Jennifer

http://www.circ.ahajournals.org/cgi/content/full/111/13/1574 Here is an article on the Renin-Aldosterone paradox in POTS. Low Aldosterone is apparently commonplace for POTS. I don't have a clue since my Aldosterone is high If you can find a good Endo that deals with the dysautonomias and neuropathies of Diabetes you'll get more answers. Good Luck!