firewatcher

I was on it briefly. It did more for the tachycardia, but less for the BP, but I did not sleep! I would wake up several times a night with severe headaches. My sleep doc said I was the second patient he's had to have this symptom with bystolic. It lasts longer than my dose of propranolol, so I probably went too bradycardic at night. It also did nothing for the "secondary" symptoms of POTS: tremor, etc. It can work wonders for the right patient though.

Dani,

POTS alone would be enough, but a baby to boot, plus the after-effects of pregnancy would and did send me into a tailspin! You probably are depressed! Postpartum could do that. Have your thyroid levels checked. Mine went hypo after my second and I was weeping at The Tigger Movie! Once they were fixed, things were much better. Try the normal, non-medicine antidepressant stuff like sunlight and exercise (don't try supplements!!!!!,) and try to get enough rest without wallowing in bed all day (that was a hard one for me after I had my first one....I was exhausted all the time.) Give yourself a break, you just performed a miracle-----making a baby! Your body has to recover. If your insurance/budget will allow it, get a therapist. Just talking to someone can help as well. Good luck, sweetie, and don't be afraid to get help.

Well, I had some hair left before I found a cardiologist. (I didn't tear it all out!) I actually found two and now I feel like a weenie. The first doc knew almost nothing about POTS, but is willing to learn and is local. The second doc know a great deal more about POTS, but is an hour away and out of my hospital network. I chose the second doc. I'm just tired of having to educate my doctors. I want to just go to them and have them say "this is what is going on and why it is happening..." and have them be correct. I've gone back and forth in my head, do I go back to the first one and "educate" him (aka: be his guinea pig,) or stay with the one who already knows how to treat me and just juggle all the paperwork? My husband thinks I'm overthinking this whole thing and should stay with the guy who knows.

Anyway, we still don't really know why I have the bradycardic episodes, but we do know that the chest pain is benign. Doc #2 said that since I was going HYPER-tensive when they happened, it was not causing a lack of O2 to the heart, so that wouldn't be the pain. One thing we did figure out was that it has some weird relationship to my hydration status and serum osmolality. These episodes only happen when I'm thirsty, still medicated and have a measurably high serum osm (thick blood due to dehydration.)

I would be absolutely explainable if I were a rat.....I even brought in a journal article to prove it. I think I'll go find a piece of cheese and then go find a corner in a maze to curl up and enjoy it........

This is simply the most recent, but there have been several that I have come across:

J Psychopharmacol. 2010 Jan 21. [Epub ahead of print]

Autonomic dysregulation and the Window of Tolerance model of the effects of complex emotional trauma.

Corrigan FM, Fisher JJ, Nutt DJ.

Argyll & Bute Hospital.

Abstract

This paper reviews the Window of Tolerance model of the long-term effects of the severe emotional trauma associated with childhood abuse, a model which can also be applied to adult trauma of sufficient severity to cause post-traumatic stress disorder, chronic dysthymic disorders and chronic anxiety disorders. Dysfunctional behaviours such as deliberate self-harm and substance abuse are seen as efforts to regulate an autonomic nervous system which is readily triggered into extreme states by reminders of the original traumatic events. While midbrain areas such as the periaqueductal gray mediate instant defence responses to traumatic events and their memory triggers it is proposed that ascending monoaminergic tracts are implicated in longer-term changes in mood and arousal. An imbalance of ascending dopaminergic tracts may drive rapid fluctuations in level of arousal and in the associated mood, drive and motivation. Animal models of depression frequently use traumatic experiences of pain, isolation or social defeat to induce changes in mesolimbic and mesocortical dopamine systems which may alter prefrontal cortical control of midbrain defence responses. A focus on the pharmacology of the Window of Tolerance could provide advances in drug treatments for promoting emotional regulation in those who are suffering from the chronic sequelae of traumatic experiences.

PMID: 20093318

J Natl Med Assoc. 2007 Jun;99(6):642-9.

Cardiovascular manifestations of posttraumatic stress disorder.

Bedi US, Arora R.

Department of Internal Medicine, Rosalind Franklin University of Medicine & Science/Chicago Medical School, IL, USA.

Abstract

Posttraumatic stress disorder (PTSD) involves the onset of psychiatric symptoms after exposure to a traumatic event. PTSD has an estimated lifetime prevalence of 7.8% among adult Americans, and about 15.2% of the men and 8.5% of the women who served in Vietnam suffered from posttraumatic stress disorder (PTSD) > or =15 years after their military service. Physiological responses (increase in heart rate, blood pressure, tremor and other symptoms of autonomic arousal) to reminders of the trauma are a part of the DSM-IV definition of PTSD. Multiple studies have shown that patients suffering from PTSD have increased resting heart rate, increased startle reaction, and increased heart rate and blood pressure as responses to traumatic slides, sounds and scripts. Some researchers have studied the sympathetic nervous system even further by looking at plasma norepinephrine and 24-hour urinary norepinephrine and found them to be elevated in veterans with PTSD as compared to those without PTSD. PTSD is associated with hyperfunctioning of the central noradrenergic system. Hyperactivity of the sympathoadrenal axis might contribute to cardiovascular disease through the effects of the catecholamines on the heart, the vasculature and platelet function. A psychobiological model based on allostatic load has also been proposed and states that chronic stressors over long durations of time lead to increased neuroendocrine responses, which have adverse effects on the body. PTSD has also been shown to be associated with an increased prevalence of substance abuse. With this review, we have discussed the effects of PTSD on the cardiovascular system.

PMID: 17595933

There is research out there that prolonged stress, particularly during the developmental phase of childhood or even later, causes such a sustained cortisol response that it changes the autonomic nervous system's pathways. It is quite possible that post traumatic stress could cause POTS. This is not the case for everyone, but certain people are more susceptible to these changes.

I loved the list, but must add one caveat....the first time I see a doctor, or one I've already seen, it seems that they have NO idea about my history at all! I don't think most of my docs take the time to really read my history, and therefore, and appointment becomes more confusing, with the doctor only having "x" amount of time to spend per patient. I wish they would take the time to read my charts!

I have a standard, four page medical history that I send every new doc before I see them, along with a cover letter explaining why I am coming.

---page one is a complete medical history in chronological format (1976-adenoidectomy, 1987-broken left forearm, both bones-three fractures......2010-Renal flow scan, gfr=87, blah, blah, blah)

---page two is a short summary of ongoing conditions and current symptoms and how they are controlled (polyuria-controlled by dDAVP, enhanced physiologic tremor-controlled by propranolol....)

---page three is a complete list of current doctors with names, practice name, phone and fax numbers, as well as previous or consulting physicians with phone and fax.

---page four is a complete list of current medications and supplements with dosage, time taken, how often and why (nurses LOVE this one!)

I also make a list of talking points ahead of time so that all my questions are addressed and in case of brainfog!

I have all my labs and previous tests in a BIG D-ring binder, so that if they ask for the results of test x, I can flip to it and pull it out for them to copy.

Most docs don't read until they are right outside the door of your exam room, so make it short and sweet. If they don't read that.....good luck! They are probably too busy to spend the amount of time we tend to need.

I have actually found many female docs to be quite catty. Men are hardwired to "fix things," and if you find a good doc, that works in your favor. I've never been the touchy-feeley type....give it to me straight and make sure it is correct. I do have a couple women docs and they seem more concerned about how I'm "doing with all this," instead of whatever is CAUSING "all this." I don't think they'd take well to me saying: "Honey, I've got plenty of girl friends, you just stick to your job!"

I did find a cardiologist (I think.) He was blunt, honest and explained things well, touching on every strange lab result before I mentioned it. When I mentioned that my kidney doc said my S Creatinine was probably high due to increased muscle mass, he gave me one of those up and down, male-appraisal looks and simply said: "ah, I don't think so." I did not mind at all. Men have instincts too, and they are also hardwired to detect health/fertility in women, so as long as they are willing to actually admit it and use it rationally to make health decisions (and not to make advances) I don't mind at all. I am extremely old fashioned and like my men to act like men (barring the club and cave.) If he wants to appraise me like he would a horse, well neighhhhhh! Now FIX it!

Mine all got to the point that I found a therapist who specializes in chronic illness. It helps to vent to someone other than family and have an outside source to "trouble-shoot" and help me cope and make game-plans.

Sometimes "good" health is simply an illusion. I always say: "Yes, good health is an under-appreciated treasure and I certainly miss mine!"

Actually there have been several previous threads about the effects of intercourse. Flushing, tachycardia and worsening of symptoms are all VERY common after sex. My OB/GYN says that sex releases "a whole lot of catecholamines" if you do it right. I get vicious headaches afterwards, as well as all the other stuff. Honestly, the only things I've found that help are Klonopin and sleep.

I absolutely can NOT sleep inclined at all. Not in a car, plane, chair, recliner or propped on pillows!

Klonopin and limiting it to right before sleep.

When I get this way, I have found that drinking at least 10+ ounces of anything helps. It is a fairly accurate measurement of my volume status. I've been 8 mm/hg apart and nearly fainted. I am usually 12-20 mm/hg apart in the morning and feel awful!

My therapist mentioned at my last appointment that she was surprised that I was not on an antidepressant. Fortunately she also reads obscure studies (like me) and agreed that my artwork acts as a natural antidepressant. The act of artistic creation directly modulates the brains serotonin, dopamine and norepinephrine levels. Unfortunately, the creative brain is also vulnerable to other illnesses, based on the very wiring "glitch" that makes it creative: migraines, depression, bipolar, parkinson's and addictions. I guess there is a price for every gift.

Part of the problem is an understanding of what is leaking: you can leak fluid, but not blood.

RBCs and all the "stuff" found in plasma is a suspension in water/plasma which can pass freely through cells or out of cells. Technically, Hypovolemia is a lack of total body blood. Technically, you are NOT hypovolemic when you are dehydrated, and you are only lacking water. Bruising is blood from broken/leaky vessels showing under the skin. If it is only water, it won't look like anything other than swelling or you could just lose it through sweat or urine. With POTS, you can be low in both blood and fluid, so you can be hypovolemic AND dehydrated. I have the inability to retain water (without meds) but my cells and solutes to create blood are all concentrated, so technically I'm really falling into the dehydrated category. If you are anemic, or had a blood volume test to determine that you are hypovolemic, you may NOT be dehydrated, just lacking enough total blood volume. It is a really technical medical definition and for POTS, the results of either are the same.

I have been told I have both, but not officially diagnosed. My labs are highly indicative of hypovolemia and I have been dxed with partial diabetes insipidus, but that is constantly questioned. At first, my evaluation said no to hypermobility, but my physical therapist has since reversed that saying that she's never had a patient with my range of motion or fragility of joints/tendinosis issues.

Yea, I wish they would research into the root cause of this.

How is the new test for AVP(same as ADH?) going to test--more simple than the deprivation test?

It measures copeptin (a more stable chemical than AVP.) Copeptin is released at the same time as AVP, so it has been proven to correlate accurately and is much less prone to error. It will still be a water deprivation test, but not as long on the deprivation, plus a serum/urine OSM measurement at the same time. I had my AVP test done 4 times, once at a university hospital, so I know it is accurate......nuthin'

There is an article from Dr. Raj called the Renin-Aldosterone Paradox that somewhat explains this. It is somewhere on the site/forum already.

I have low blood volume:

High hemoglobin/RBC/hematocrit

High serum osmolality...thick blood (all the time)

Lower than normal renin and aldosterone

No measurable AVP, even during a dehydration test

No pituitary hyperintensity indicating that I even make it

I do concentrate my urine when severely dehydrated, but they are finding that other hormones sometimes kick in when vasopressin doesn't.

My weight can fluctuate up to 8 pounds in a day--all water.

I also have an on again/off again dx of partial diabetes insipidus.

How about white at the top (due to lack of bloodflow) and deep scarlet on the bottom for pooling?

E-

Bystolic is cardio-specific, so it shouldn't effect all the other $*%& that your body is spitting out when you stand, there's the problem and why it didn't work well for me. When the pulse pressure narrows, your diastolic will go up and systolic will go down when you stand. When was your last IV? It is a "classic" hypovolemic response. I'm sorry the last cardio didn't work out. Take it easy and try to keep your BP down.

My thoughts and prayers are with you!

Jennifer

Many of us have sleep disorders along with our POTS dx. They can be caused by all the same chemicals and neurotransmitters that our systems are awash in due to the over-reaction of our sympathetic nervous system. Both can also be caused by problems with the same part of the brain. I have a circadian sleep disorder (a genetic, hypothalamic/pineal problem) but POTS makes getting to sleep much worse..... and the lack of sleep makes the POTS worse. If you have narcolepsy, you probably still have narcolepsy and POTS is just another condition you have along with it. Eventually I think they will find the brain center that is responsible for POTS is also the part in the sleep mechanism.

DYNA-Kids uses red and I've seen some ribbons using royal blue.

Dani, you don't have to drink to have a good time. Tell your Mother and your friends that you'll go, with one rule: no alcohol for you. If you are taking anything like Klonopin it is a BIG no-no. Actually, if you want to drink the "virgin" drinks all night, it might keep your BP up high enough to enjoy yourself. When I had a four month old, my biggest treat and the greatest gift I could receive was four hours of uninterrupted sleep! If your friends are your friends, they will understand and try not to make you worse. Don't compromise your health or your daughter's safety by indulging people who don't have your best interest at heart.

I have not had a drink in over two years.......it is highly overrated.

Hand up here! I've been symptomatic since I can remember.

I wouldn't go to a cardiologist, except that I'm having a "heart issue" with inappropriate bradycardia and palpitations and my other docs are telling me to GO to a cardiologist. I'm beginning to think that it would have been less of a hassle to go back to Vandy. (Even they said to get a local cardio!)

Tomorrow I am finally getting a haircut, so there will be less to pull out! At least I've finally found a hairdresser that will touch me.....