firewatcher

A long time ago, in a lifetime far far away...when I could actually exercise and not get all weird... I used to lift weights and was very into martial arts. At the same time, I could not jog a lap, much less a mile without getting so tachycardic that I would grey out or see spots and have to stop. I would also walk the treadmill, I also had no issues with the incline, but the speed was not a variable. I could crank that thing up to the highest incline and go, go, go, but put it flat and up the speed and I was done! I walked like this for six months and NEVER had achieved any cardiac conditioning, I always had a high heart rate that did not come down, even after six months. No clue what it means now or meant then, but I sympathize with you!

Jump, I need an invite to your party...the more the merrier I suppose. I thought that once I went back on my meds that I would feel better, and I do, a little. I am just wasted, I feel OK for two or three hours and then hit a wall. I can't do half what I want to and I am really struggling with this @#!*ing headache. I don't want to up the Klonopin, but I can't find anything else that helps. If I provide a caterer, can I come too? Sorry to vent on your vent, but I suppose it will just increase the updraft. Either way it stinks.

Jump, Glutamate is a neurotransmitter. MSG is the synthetic form of it. I don't remember what glutamate does, but I'd bet if you look it up you'll find that it reacts with the ANS in some way. from Wikipedia: "Glutamic acid also serves as the precursor for the synthesis of the inhibitory GABA in GABA-ergic neurons. This reaction is catalyzed by glutamic acid decarboxylase (GAD), which is most abundant in the cerebellum and pancreas." GABA is the "slow-down" neurotransmitter. Klonopin acts directly by increasing GABA and decreasing neuronal firing. Maybe I just need LOTS more Chinese food

Cancer cells are "more fragile" than "normal" cells aren't they? That is why chemo works. And the body also recognizes that they are foreign. If we are genetically written for hypermethylation, that part would neither be foreign nor fragile. I question what else is tied into our genetic methylations status and the ramifications of tugging on that particular building block. If your hypermethylation is coming from an outside source, can you isolate that source? I think I understand a little, I definitely have to read more...

I'd like to swerve this thread to a completely related question: methylation. There is a concept of "orthomolecular nutrition" that is completely based on methylation and how potent histamine is as a neurotransmitter. Carl Pfeiffer started this back in the 70's studying psychiatric patients and noticed some commonalities. I DO NOT think that these are a cure or even a treatment for POTS, but it is an enticing piece of the puzzle and how the body works. I researched this when I had such a horrendous reaction to B vitamins and some of it rang true for me, but after contacting several "centers," I decided that it was less than good medicine. THe research may be valid and it could bear investigation, but it is not the wonder-cure that they tout. I know I am being vague, but I don't want to have everyone rushing off the get their histamine tested and start a bunch of expensive supplements with false hope of a cure. The two main conditions are histadelia (undermethylation) and histapenia (overmethylation) http://www.healthrecovery.com/HRC_2006/Depression_06/D_roller_coaster.htm "In your hypothalamus, histamine stimulates the release of the important neurotransmitters serotonin, dopamine and norepinephrine. Another role of brain histamine is to counterbalance dopamine in that area of the brain that filters sensory information coming into your brain. With too little histamine, dopamine levels are elevated. The result of too low histamine can be thought disorders or even hallucinations that feel like your mind is playing tricks on you. Other psychiatric symptoms develop when too MUCH histamine heightens and distorts the release of these key neurotransmitters serotonin, dopamine and norepinephrine. When abnormally high, histamine will cause over stimulation, aggressiveness, compulsivity, and a racing brain (among other symptoms.)" Sooo, has anyone else found this information and have thoughts? In answer to the original test, yes, after more research and study, I would also do gene therapy.

I am all too familiar with this question This one brought me to my knees last August. I've NEVER been able to get to sleep, it's a Circadian thing, you can give me just about anything and it won't do squat till my body says it's time to sleep. If any of you are "night-owls" you may have the same Circadian thing and meds won't work like they are supposed to! Circadian Rhythm disruptions are also a "new" diagnostic malady (since the early 1990's) and most doctors (even older sleep doctors) will look at you like you've sprouted another head. I have Delayed Sleep Phase Disorder, my clock runs late and my body says "sleepy time" well after midnight. Giving my a sleep med was like giving it to a normal person at 3:00 in the afternoon, it would relax me, but not send my to sleep. On to the meds now, I've tried most of what is out there and found that the absolute guarantee of good sleep is a regular routine, Inderal and Melatonin. Beta Blockers destroy the body's natural melatonin, so I then replace it at bedtime with 1.5mg Melatonin (tiny dose.) I'm out in 10 minutes, it used to take 3 hours! I never thought that Klonopin did anything for my sleep since it did not sedate me, but after coming off recently I noticed that it really calms my mind. I thought about more when I did not take it and that made it harder to sleep, and if I woke up I would again start thinking...but it did nothing for me to feel sleepy. I've tried the following with these results: Amitryptaline--vicious headace Trazadone--nothing Mirtazapine--worked too well, slept for days but food tasted FANTASTIC! Sonata--too short acting, built tolerance fast Ambien--short acting, did nothing after two days Ambien CR--again did nothing after two days Lunesta--tastes AWFUL, stopped working after two days Benadryl (double strength)--allowed the nudge toward sleep if I was already tired, extremely short acting Most sleeping meds will act on the CNS, that's why they work! But if yours is revved from adrenaline they won't, or if your body says it's time to be awake they won't. If you have apnea, you may not want them to work! If you think that you have a Circadian issue, google the Horne-Ostberg Morningness Eveningness Questionaire and fill it out and take it to your doc. There is not much that can be done to successfully shift a circadian clock, but the awareness will take much of the stress away.

Jump, Hang in there and vent away. Can I come to your pity party? I'll bring gatorade and pretzels, what movie do you want to see? I like Analyze That with Billy Crystal. Jennifer seriously--when I am down after some stupid doctor's appointment, I like to watch that movie...Robert Deniro(?) has NONE of the social niceties that we all have and tells it exactly like I'd like to. I'd get thrown out sooo fast if I did that, but I'd love to say exactly what I think sometime. A funny movie allows me to forget my world for a while and a good laugh does wonders! I hope you feel better soon.

What did your PCP say? Where do you go from here? My PCP has told me that endocrinology is the hardest of the subspecialties and most medical students forget as much as they can as soon as they pass the test. He also said that most Endos go into the most common problem--diabetes, and never look at or educate themselves about anything else. I had an appointment with two other Endos before my doc called and told me I had to see this one specialist over an hour away (apparently he liked challenging cases.) So far he's been the most "right" on my diagnosis, but he's a pickle to work with (I practically have to show up with incense and a burnt sacrifice to see him ) Good luck, if you want a second opinion opt for someone with a reputation for liking a challenge or someone fresh out of med school.

Benadryl got me through the worst POTS episodes I have ever had, before I knew it was POTS. I did not know what all this was, I just knew it made me feel better. Afterwards, my docs and I figured out that it is potent CNS depressant first and just so happens to be an anti-histamine aside from that, so it hits the ANS and your reaction to mast cell degranulation if you are hyperadrenergic and have that. I usually sit down on my feet (acts like a muscle pump) or lie down if I can. My HR slows if I am on my right side, I guess it's a gravity thing. If I bend over at the waist or lean over on a counter, my HR will lower as well. I grey-out if I crouch too long. I have not had anxiety except during my big crash last year and I got through that with the mantra "this is NOT real, there is no REASON that you feel this way..."

Do any of you suggest one abdominal support over another? Dr. Biaggioni suggested that I wear one to decrease abdominal pooling. Are any more comfortable than others, they all look pretty uncomfortable

Hi Y'all, I did not know if any of you have come up with good one-liners that pertain to your ANS condition? Like: I don't have to stand here and take this, I can faint and squash you! I could never run...so I learned to fight.

Melissa, it could also be enhanced vasomotor rhinitis. If the ANS sends too much blood to your nose, it can collect around there too. When I cry, my eyes get REALLY puffy and my nose closes off completely. If I use my neti pot with extra salt during one of my episodes, it will shrink my nasal passages back to normal very quickly. If you can do a stage 2 neti (in through the nose and out through the mouth [not as gross as it sounds]), it would get your throat and tonsils too.

Susan, could you update us please?

Julie, I dumped article after article on my doctor's desk about POTS and bugged all my doctors to call one another about it. After the agreement "uh, that sounds like what she has..." was made, the doctors wrote referral letters for me. I think that five of my docs wrote to Vandy with referrals and I tend toward tenacity. After yesterday, I am happy I'm not a quivering basket case (my whole body was shaking during the cold pressor test. ) Don't be afraid, they are there to help and learn FROM us. I am just thrilled it was a positive experience for me, I did not dare hope for anything at all.

Thank you!

Susan, I would try and get a dialog going between you or Sara's docs and Vandy first. The disabled people that were waiting with me were treated very well. Everyone was very kind and helpful. I hope you can find something that works for Sara. Wishing you both peace and rest! Jennifer

OK, Dr. Biaggioni said that while POTS patients had polyuria, they could concentrate their urine after 12 hours of fluid deprivation. The Serum Osmolalities and Urine Osmolalities are essentially normal with POTS, it's a renin thing that caused the urination, NOT an ADH thing. After looking at my SOsm/UOsm results, they are not typical for POTS but are for Partial Central Diabetes Insipidus. He also stated that this was not his point of specialty, and that ONLY a clinical water deprivation test would give a definitive diagnosis. But, that was unnecessary with me since the treatment would be the same regardless of either diagnosis. He also did not believe that POTS could cause clinical DI. So, the MIS-diagnosis is based on volumes of urine, NOT osmolalities. From my readings though, if you consume large quantities of liquid for any length of time, you can "wash out" the concentrating ability of your kidneys, so the Urine Osm will be low, there must be a corresponding HIGH Serum Osm for it to be DI.

Hello all, I guess I finally belong now...I OFFICIALLY have POTS (probably hyperadrenergic.) After a lovely tour of North Georgia bathrooms, my Dad and I arrived at a very crowded hotel (ask for the hospital rate it is 1/3 cheaper): the Country Music awards are the 12th so there was "no room at the inn." The next day we went and checked in without trouble (the clinic is attached to the parking garage where you can park for free.) After two waiting rooms, we were brought to a room where we waited for an hour (they forgot about my testing ) Once I complained, things moved very quickly and they were very apologetic. I had the orthostatic test: lying down, sitting and then standing still as long as I could: supine= HR-78bpm BP-126/75 1min. upright= HR 123 BP-148/98 lightheaded 3min. upright= HR 126 BP-131/92 pounding heartbeat/beginning to shake 5min. upright= HR 115 BP-159/76 sweating/hands and legs shaking 10m. upright= HR 112 BP-137/85 sat down fast Breathing test: in for 5 sec. out for 5 sec. for one minute results normal Valsalva: BP overshoot to 145/117 hyperadrenergic response Cold Pressor: HR-105 BP-150/99 hyperadrenergic response Dr. Biaggioni saw me immediately after the testing and spent over 40 minutes with me explaining everything and answering questions (I had a lot!) Whatever I have it is not just POTS (which I have probably had since elementary school, due to exercise intolerance.) He believes I do in fact have partial diabetes insipidus (see the MIS-diagnosis of DI thread for his reasons) and other endocrine issues, whether they are autoimmune or not he could not say. So now I go back to all three Endo's and let them figure out that part. Everyone was very nice, and willing to say "I do not know," if they did not know. It was the best I could have hoped for given what I am dealing with, so I guess a partial answer is better than none. He wants me to go back on all my meds for 6 months and attempt to increase the tone in my abs and lower body, as well as compression stockings. Then we see if any improvement has been made.

dlark, Thanks for the links! I had read most of those before and they are why I am suspecting low blood volume as well ( a pulse pressure of 7 should give you a clue!) I also had an ADH of <0.8 with a serum Osm of 295. The last SOsm/UOsm I had done was 295/354 and that was after 13 hours fluid deprivation. I feel soooo much better on the dDAVP, but the two second opinion docs want me off it until I get back from Vandy. I don't know how many times I'll have to stop before I get there, it's a six hour drive. I know that POTS can cause something that mimics Central DI, and I hope to know the exact difference soon. I know I have always had the HR symptoms, but the constant urination is new since this time last year. I just want to make sure that the docs aren't dismissing an undiagnosed autoimmune thing. Welcome to the forum by the way. I have rarely come across a more positive group of people and I am glad to be a part of it!

Thanks everyone who has and are still voting! I was again looking for some pattern (I do that alot ) I just wondered if there was a predisposition to ANS dysfunction because of a genetic sensitivity to certain brain chemicals. Introverts supposedly have a higher blood-flow to certain parts of the brain as well as stronger reactions to dopamine. Fascinating stuff really, it just doesn't help.

Ah well, It was a hope, small, but a hope nonetheless. Thank you for fielding my theory! I know I have never fainted, I've pushed the blood up to my brain when I was close (straining.) And I can raise and lower my BP a little bit. The human body is an amazing thing. I was in hopes that through training, some of us may mitigate our responses. I was looking into my upcoming cold pressor test (I think I have Raynaud's and I am NOT looking forward to that one!) and saw that some people can modify their response and it got me thinking...This morning I would crawl around on all fours and bark like a dog if it would make this headache go away.

This actually dovetails with the Introvert/Extrovert Poll so please go vote. I have always been and still am an introvert; I prefer to socialize one on one and avoid parties/groups a great deal of the time. When I was younger, I was extremely shy and social situations were physically painful for me. Sometime in Middle School my family moved far from where we had been and I began at a new school. I was sick of not having friends and being a wallflower so I decided to longer be one. It was hard to force myself to be outgoing, but I did it, no one knew that I was ever any different. Gradually it got easier and easier and it no longer became stressful to be in groups or around many people. Now, prolonged exposure to social situations is tiring, but not stressful (unless it?s family ) So, here is my theory: can we ?re-train? our neural pathways to respond less to the over-stimulation? Can we modify our behavior to physically change the way our brain reacts to stimuli and thus change our autonomic glitch????? There have been many studies in biofeedback for Raynaud?s syndrome (controlling vasoconstriction,) modulation of the BP and HR response to the cold pressor test through relaxation and controlled breathing and there are anti-faint maneuvers that can be done to lessen sudden blood pressure drops (think fighter-pilot.) What if, through training, we could modulate our autonomic responses and find some measure of control or relief from our symptoms? What if there things that we could be taught to do to ?re-train? our ANS? If we taught it to our affected children early enough would they change their body?s physical response? Would it stick? Thoughts? Anyone do this already?

Ernie, I understand how this would effect your social life tremendously, but do you still "need" the companionship of others like you did? Or have you found that your preference has actually changed? If you are still energized and feel better in the presence of others, you are still an extrovert!

Introvert ="the state of or tendency toward being wholly or predominantly concerned with and interested in one's own mental life". Introverts find social situations draining and prefer one on one interactions with others. Generally needs time alone to recharge. Extrovert = "the act, state, or habit of being predominantly concerned with and obtaining gratification from what is outside the self." Extroverts thrive and truly need social interaction to be happy. Generally feels best when with others and dislikes being alone. Again, just curious since the two brains are apparently wired differently. Has dysautonomia changed your wiring, or are introverts more prone to "overstimulation" or a change in brain chemistry from illness??????? http://www.healthleader.uthouston.edu/archive/Mind_Body_Soul/2005/introvertsvsextroverts-1221.html

Have you tried dDAVP at night? It should eliminate the need to get up at night to urinate and will keep your volume up without chugging vast quantities of water/gatorade. I know it can be given to children for bedwetting, and when I was on it, I had NO BP fluctuations at all going from supine to standing. It may work better for you than florinef. Just a thought.