firewatcher

THIS IS NOT A PSYCHOLOGICAL THING! It is a physical condition that effects my psychology. You cannot think this away or even do or not do this to yourself. Document EVERYTHING, keep ALL test results.

Hi Ladies and interested guys, This is a semi-bizarre question for those who believe that they have always had POTS or have the hyperadrenergic POTS: Did you have difficulty breastfeeding? I am looking into the NET transporter deficiency theory of hyperadrenergic POTS and found that this transporter also moves dopamine, not just norepinephrine. This is ringing true for my case on several points: 1. I made WAY too much milk (80 oz. a day) when I breastfed both my boys. Dopamine is the "off-switch" for prolactin and milk production. I still have galactorrhea 6 years after weaning my son. 2. My tremor, dopamine is involved in tremor (think Parkinson's.) 3. Rapid depletion of dopamine (think awful clinical experiment trial reports) recreates EXACTLY what happened during my crash in August of 2007. Did any of you have problems with your milk supply when you nursed? (frequent leaking, infections, super-gassy baby?) Again, I am looking for patterns, clues, explanations, common denominators... Thanks! Jennifer

Depending on which doctors I listen to, I have Hashimoto's. I think the Diabetes Insipidus could also be autoimmune, but since knowing for certain won't change my treatment, no one is willing to do any further testing. Apparently I also have some wicked allergies (I have an epi-pen FOR my allergy shots and have never been able to get past the initial starting dose of allergy serum.)

Seth, Get some compression/biking shorts and wear them all the time. Salt and water...get up slowly... Print out the FAQ page of this website and give it to your doctor and ask, "OK, what ARE we going to try FIRST?" Good luck, at least they dxed you early. When I was a teenager, everyone just told me I was out of shape and lazy.

Ernie, Be brave (like you aren't already! ) You will be fine, good luck!

Get well! Prayers and positive thoughts coming your way!!!

ramakentesh, How were you tested for this? Specifically what tests were done? My endo (#1) says I could not possibly have hyperadrenergic responses because my catecholamines were "low." However, he did not do the test like an ANS specialist would. Has this knowledge changed your treatment?

EM, I can lose 6 pounds in a day. For me it is volume related. I think whatever is controlling the plasma volume is suddenly deciding to kick into gear and allows us to retain more fluid and then it gives up and out it pours. You could also be going through thyroid surges, that would cause a more gradual yo-yo of mass as well as volume. Again, for some reason, it goes into gear and does what it is supposed to and then goes on strike again. Just my theory.

Melissa, Melatonin will lower your BP and HR, so if you have orthostatic hypotension, it WILL make it worse. When you say that it is the only thing that puts you to sleep...how much do you take and when (immediately before bed)? Have you tried other sleep medicines (Ambien, Lunesta, Sonata...)? Have you seen a sleep doc? If you have a circadian rhythm disorder then melatonin is the only thing that will help you sleep, you are just making it naturally at the wrong time and then adding too much by using the supplement. My sleep doc pointed out that artists and computer programmers are notorious for having circadian timing problems. If you stay up till you are sleepy (1-3am?) and then go to bed, do you get to sleep OK? Is it really hard to get up in the morning? Melatonin and it's action are not fully understood by scientists. It does much more than just tell your body when to sleep. It acts directly on the hypothalamus (center of control for the ANS), but it also effects many other systems. As exquisitely sensitive as our systems are, it makes sense that anything that effects our nervous systems will be magnified and change our symptoms. For everyone else, I'd like to climb on my soapbox here for a second: Melatonin and ALL the OTC supplements ARE DRUGS!!!!! Just because you can get them without a prescription does not mean that they are harmless, or that you need them! Many of these have mechanisms of action that are not understood. Many (MSG, melatonin, GABA, 5-HTP) act directly on the brain and nervous system. Use them cautiously and under your doctors supervision. We don't react to anything like "normal" people do, so we can totally screw ourselves up by following the advice of "normal" people. Listen to your body, it isn't going to lie to you. OK, I'll get down now.

jump, I had what I think was a full adrenal panel test done: ACTH stimulation test (measures cortisol, done for addison's (low) and cushings (high). Renin/Aldosterone Catecholamines (dopamine, epinephrine and norepinephrine) CT-scan Potassium would be off if your Renin/Aldosterone were off, which is COMMON in POTS and its frequent urination. So, I don't think that just checking that would be enough. Do you have other markers? Like darkened skin on scars and knuckles? There are many tests for adrenal function, it sounds like your doc was lazy or his people aren't skilled enough to do the tests right.

Grey, Unfortunately you are going to have to get used to it. Once you have a definite Dx and treatment, many competent docs will still say there is no such thing as what you have! So, unfortunately, YES you still have to do all this once you are being treated. Just keep it all in an organized D-ring binder and put it in as you get it, that way it is ready to go to the next doctor when you are. I try to make sure that my PCP also gets a copy of all the specialists' test reports. My Dad keeps telling me its the practice of medicine, and I can't wait to see the performance! With all this practice, the performance must be amazing! Chin up! We are here for you! Jennifer

I'm trying to find specialists on the DINET list who can see me in the next few weeks. I'm discovering this is a difficult goal. Good luck on that one! My endo, neuro and primary docs all thought it was POTS but refused to call it. They pushed hard and I got in to Vanderbilt's outpatient clinic...it took 6 months. I was dxed there with hyperadrenergic POTS and some of my docs are still arguing with the diagnosis. Give us an idea where you are and maybe someone here can point you to a neuro or PCP who can treat you. You will find that organization (start NOW and keep copies of every lab and test result!!!), education and persistence on your part are going to be your best treatment options. It will be YOU who teaches your doctor about POTS, and it will also be YOU who tells him what works and what doesn't. Treatment is so individualized that it will be trial and error for quite a while. Read and ask lots of questions here and you'll get a clearer idea of what med does what and why, and what may work for you. A PCP with an open mind and no box to think inside will be your best care option.

If your heart rate increases by 30 bpm or more by just standing and for no physical reason (a week of diarrhea, massive blood loss, addison's disease, someone with a gun to your head), then yes, you have POTS. Hyperadrenergic POTS is an over-reactive ANS. The brain and heart sense a sudden shift of blood volume and kick it ALL into high gear and ends up overcompensating by releasing too much norepinephrine, cortisol and constricting your blood vessels too much among other things. The treatment will probably be the same, CNS depressants (Klonopin, Valium, etc.) to calm down all the neural firings and beta blockers (Inderal, etc.) to slow the heart and lower BP, plus some sort of blood volume expansion if you show signs of hypovolemia. Does your doc know what POTS is? Has he used that term at all? My first endo just called it orthostatic intolerance. Good luck!

I have been "doing" the spagettios and olives thing for several days now. Bleeehhhh. I think my potassium is high because of the dDAVP and my normally low salt intake. As my plasma volume expands, it's diluting the minerals and I am dumping sodium OR it would be normal if I would just eat enough salt. I have several things that make them say no to the diabetes insipidus dx and this is one of them. I really don't like salty foods and my entire family has high blood pressure, so its hard to get out of the "low-salt" habit. But if it IS DI, salt is the last thing I need...round and round it goes, where it stops nobody knows. sigh

Pluto, During my ANS function testing my HR and BP did that too. Dr. Biaggioni calls it a hyperadrenergic response (think adrenaline and norepinephrine.) My BP spiked to 148/98 and my HR went to 126 from 78, I was shaking and sweating just standing there! Beta Blockers worked really well for me. I also have crazy narrow BP readings which indicates low blood volume. You can't replace all that fluid that you've been missing for so long and expect the body not to react. Keep a log and watch the BP readings, but calm down! Getting all excited or worried will spike your BP too. Is there anything that makes you feel better? Is the florinef making you feel worse? Rachel is talking about an article by Dr. David Bell on orthostatic intolerance: http://www.pediatricnetwork.org/medical/CF...ry/oi-intro.htm Do a search here on hyperadrenergic POTS and see if it looks familiar. Good luck! Jennifer

I wouldn't think so, but if it's that simple, stop the melatonin for several weeks and see!! Man, I'd love a fix like that!

Thanks anyway! I'm not too sure I need to mess with my sodium right now anyway. When the dDAVP quits and I start my daily urine dump, I think that if my sodium intake is any higher I'll go hypernatremic very quickly. Until I get clarification on the diabetes insipidus diagnosis, I'd better stay where I am. It's frustrating because if it's not DI, then sodium loading will help, if it IS DI then sodium could/will cause big nasty problems! I've gotta get that magic 8 ball fixed! I'm running out of flower petals to pluck!

I have NEVER, and I mean NEVER slept as well as when I took melatonin about 3 hours after taking my Inderal. I had to stop my night-time dose of Inderal because of bradycardia and have not slept as well since then. My sleep doc said that it made perfect physiological sense: get rid of your natural melatonin and then put it back at exactly the right time. I have a delayed melatonin onset (circadian) disorder, so by putting it back at the correct time I slept great!!!!!

There is a good summary of this on the main page of this site. For some, melatonin makes POTS worse. For me, it has been a good thing. It lowers both my HR and BP. There are as many variables in responsiveness to melatonin as there are types of POTS and symptoms. I think for those who are hyperadrenergic or have severe migraines, melatonin would work well. If you have used it successfully for four years, I would not worry too much if at all. Dosage is also important, I know several people who have to take 6+mg to see any difference, but I only need 1.5 mg. Another thing to take note of is that Beta Blockers eliminate all natural melatonin from your system.

The tingling can be explained by an electrolyte imbalance caused by the water or sodium retention, or the sudden swing between high and low sodium or potassium (each will regulate the other.) I get tingling and swelling if I walk too long. Look at this article, you may want your doc to monitor your electrolytes while on it! http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/hyperkalemia.jsp

DON'T let them blow you off! Take your pre-midodrine labs with you!

Always searching for ways/reasons to be LESS tired; anyway, does anyone here have Central sleep apnea caused by the autonomic dysfunction? I know that obstructive sleep apnea will show up on a holter monitor as sudden increases in HR during sleep in between bradycardia. How does Central apnea present? I don't snore and my husband can't stay awake long enough to tell if I stop breathing, but my holter monitor showed regular, periodic bradycardia in the 40 bpm range without sudden spikes of tachycardia. I've never had a sleep study done, my sleep doc chalked it up to the delayed circadian rhythm thing. Do y'all think there is any merit in looking into it, or am I always going to be tired?

Have you always had the hypokalemia? How high is your sodium intake? One tends to regulate the other. I agree with "it all depends on who is looking at the test!" My Endo initially said that my labs were fine, but the nephrologist took one look at my labs and came close to saying a bad word before saying "that's too high!" on my sodium and serum osmolality. But then, most hospitals only see stats like ours when their patients are really sick, it's not "normal" (maybe for the rest of the world) for us to be walking around like this. Just try to explain to someone about what your HR does just standing there, I've seen lower HRs displayed on treadmills with people jogging on them!

Hi Pluto! (great name: the dog or the god?) Your stats sound like mine. I just got back from Vanderbilt's Autonomic Dysfunction Center where I was diagnosed with Hyperadrenergic POTS. When you stand, your body senses the sudden volume shift away from your head/heart and sends you into a vasoconstrictive/adrenaline overdrive which shoots up your BP. My stats from Vandy: Supine-- HR 78 BP--126/75 1min. upright HR 123 BP--148/98 3min. upright HR 126 BP--131/92 5min upright HR 115 BP--159/76 10min upright HR 112 BP--137/85 I usually have narrow pulse pressure when standing (difference between systolic and diastolic) which usually indicates low total blood volume (common in POTS.) I've had crazy BP readings like 87/80, 125/115 and173/149. Having enough blood in your body definitely helps with the whole POTS thing. I am on dDAVP (causes the body to retain water) and it helps a lot. Propranolol or other Beta Blockers help me with the tachycardia and tremors that occur with standing. I completely agree with the home BP monitor, I kept 12 pages of BP logs to show my docs the wild swings and what is "normal" for me. Welcome!

It all depends on WHERE you pool. I tend to pool in my abdomen, my ankles don't swell. If you pool in your legs, you need hose. Just remember that where the compression stops is where you will end up pooling. If I stop with a girdle that does not go further down, I've just constricted my middle and will end up pooling in my thighs or lower. If I only wear the thigh-highs, I'll get a pot-belly by lunch. I feel like a balloon animal, I just need to keep my head big. Right now, my lower legs are OK at pumping back up, but it gets stuck at the midsection.