firewatcher

I'm taking 20mg in the morning only. I go bradycardic at night, so they want it out of my system before bedtime. It has been the only thing that takes away the tremor. It doesn't work as well without the Klonopin, but it does work. It also helps my upright hypertension and tachycardia. It is a tiny dose, but works for me. My neurologist prescribed it for me.

I go real brady at night. Do you take the Klonopin with the Propronolol or at a different time? What strength is it? Do you feel weird or drugged on them?

My unmedicated HR is in the 40's-low 50's at night, all night. I take .25mg Klonopin with the 20mg Propranolol in the morning when I wake up. I have never felt "drugged" on either, but I am extremely hard to sedate. I am attempting to wean off the Klonopin since acupuncture/acupressure is doing a really good job at managing my daily headaches, but I am getting rebound/withdrawal tremors. I am hoping that these will calm down once my smaller dose becomes normal for me. Klonopin is highly addictive and it was not reducing my headaches anymore at the current dose (I was taking .25mg 3X daily.) My neuro said to up the dose, but I didn't want to keep doing that.

I'm taking 20mg in the morning only. I go bradycardic at night, so they want it out of my system before bedtime. It has been the only thing that takes away the tremor. It doesn't work as well without the Klonopin, but it does work. It also helps my upright hypertension and tachycardia. It is a tiny dose, but works for me. My neurologist prescribed it for me.

I was initially tested for Parkinson's too. I have an enhanced physiological tremor (the normal resting tremor that everyone has is magnified.) It is in both legs, both arms, head and tongue. I don't have gait issues either and propranolol has "fixed" it. I don't know my upright norepinephrine levels, Vanderbilt did not test them. They simply dxed me based on ANS testing responses being "classically hyperadrenergic."

General symptoms often point toward a hyperadrenergic state. I have upright tremors, flushing, sweating and hypertension. You can have either too much norepinephrine or just respond to what you have too strongly, so your catecholamines may test normally. With the other three ANS tests, my valsalva and cold pressor tests pointed toward a hyper response in both abnormal BP and HR responses. My BP narrows as the day goes on, with my diastolic getting into the 100's. I have really low BP supine and high BP standing, so I am labile too. So far, I think Vanderbilt is the only center that labels POTS patients as hyperadrenergic or not, but the common goal is to treat the symptoms.

Any thought of planning for the future. I don't make plans more than a month out that can't be changed overnight. There is no "long-term" planning anymore. No future hopes or dreams, just one day and then the next...

Ellie, I'm glad you are back! I recently read a statistic that purported that doctors kill more people than handguns, lightning and sharks combined! I'm probably safer sitting on my roof with a rattlesnake in the middle of a lightning storm! You, my dear, are a conundrum. Honestly, you aren't typical in so many ways. I have wondered what the long term prognosis is for many of us life-long POTSies. I don't think anyone really knows. I just hope that the wonders of medical science haven't messed you up too bad "practicing" on you.

Wishing you Godspeed in healing and finding a better doctor!

I have some joint pains, particularly in my right hand and both knees.

My orthopedist (when he was explaining about my torn shoulder) made a few observations and told me how to differentiate between joint pain (possible arthritis) and connective tissue/tendon pain. When I make make a fist, my knuckles do not hurt (simple joint movement) but if I pick up a carton of milk, the whole hand/fingers hurt (lateral motion not involving the joint, only tendons.) If the simple movement had hurt, he would have investigated arthritis, but since it was the movement controlled by tendons that hurts, he went towards tendonitis/tendinosis instead. Like Julie said, mast cells can cause joint pain, since there is a still unexplained connection between connective tissue (tendons) and mast cells. It could also be something simple like gout, which could easily happen if your electrolytes/blood chemistry is off. We all know how wonky our labs can be! That one at least would have a fairly simple fix, as opposed to arthritis or tendon/connective tissue disorders.

There is no reason to accept constant pain. Our bodies are telling us that something is wrong.....all we need to do is find someone who'll listen and help fix it.

Keep us posted!

Scott Hensley at NPR:

"Update: Shire said in a e-mail to us that it is "currently reviewing" FDA's proposal. The company said it "did conduct and complete the trials that the FDA required; the FDA viewed these trials as inconclusive."

Shire told the agency and doctors "earlier this year that it is withdrawing" ProAmatine and has offered to assist the makers of the generic versions "by providing them full access to Shire's data" if the companies want to conduct the studies FDA wants."

The generic companies have 30 days to respond. Shire told the FDA (and apparently the doctors) a year ago that they would stop making it, due to lack of profit.

Press Release (same as before EXCEPT that it mentions the generic manufacturers)

Perhaps if all of you write or email to the generic manufacturers, they may continue to make the drug. They have longer to respond to the FDA and could do their own study. It only has to prove that Midodrine positively effects your quality of life. Since Shire won't do it, maybe one of the generics will...it is worth a shot!

I've seen several business and pharmacy blogs about this. This is one of the business blogs from today:

On Monday, the US Food and Drug Administration announced a proposition to pull ProAmitine (Midodrine) from the market due to Shire (SHPGY) not conducting post-approval studies to prove that the drug has a benefit.

Midodrine is currently the only FDA-approved drug for Orthostatic Hypotension. It was approved in 1996 as part of a shorter approval process under the condition that Shire conduct post-approval studies. Midodrine never was a big seller for Shire, and post-approval studies were never conducted. Midodrine was bringing in around $60M/yr as of 2005. FDA stated that around 100,000 patients filled prescriptions for brand or generic Midodrine in 2009. Take note that if the FDA withdraws the medicine's approval, generic companies including Mylan Pharmaceuticals (MYL), Impax Laboratories (IPXL), and Novartis (NVS) unit Sandoz must stop selling their generic versions of Midodrine.

The company that benefits from this decision is Chelsea Therapeutics (CHTP). Chelsea is developing Northera (droxidopa) for the treatment of Orthostatic Hypotension, with pivotal phase 3 trial results due in September.

Furthermore in Chelsea?s favor, Needham & Co analyst Alan Carr said the FDA action could help:

"The potential removal of midodrine may create a greater market opportunity for Droxidopa in the U.S.," said Carr in a research note.

If Midodrine is removed from the market, and Chelsea?s Northera study (Study 302) succeeds, the stock should most definitely be higher than it is now (if stock price rises to market potential, $6-$7 is very possible).

There is a lot of chatter and several news articles about dwindling supplies for dialysis patients and nursing homes. I don't think stockpiling is going to help.

Erik, yup, it makes sense that way to me too! But I'm not going to go to yet another doc who'll do a cranial doppler ultrasound to find out exactly that and then go: "Hmmm, it's not normal, but it must be normal for you!"

My PT asked me to research brain O2 levels and exercise and basically came to the same conclusion from the stack of articles I gave her and the ones she found. When I exercise, my brain thinks it is getting too much O2 and shuts the entire system down! She has asked me to breathe at half the pace of everyone else she trains so that I don't hyperventilate. I go from aerobic to anerobic in less than 10 seconds and then into just can't do anything anymore. It is very frustrating!

I would shut down during heavy physical activity, I still get out of breath and near syncope just doing simple yard work. I think it goes back to pooling and low blood volume, As your available circulating blood volume decreases your body tries to make up the o2 deficit by breathing faster. As the body tries to manage the lack of perfusion it starts to take blood away from the parts of the body that can do without it for a while and send it to the vital organs that start to die if the blood flow is stopped. After a while the body can not keep up and eventually cuts off more blood from more organs. I like to think of it as similar to hypovolumic shock and think it is a valid comparison since a lot of the symptoms are similar to what pots patients go through. I was told by a dr. at Vanderbilt that there was no proof of that happening but my pots dr. said that my body can not keep up with what I am doing which goes along with my theory. If there is a big drop in circulating blood volume what is the difference between it dropping out of circulation in our veins and bleeding out except that it is easier to recover.

I have forgotten the mechanics of hyperventilation except that our breathing is controlled by the level of carbon dioxide primarily and o2 levels secondarily so when we breathe fast we get rid of too much carbon dioxide and that somehow changes the chemistry in the body which causes the veins and arteries to constrict which causes the body to think it is not getting enough oxygen so it continues the fast breathing to bring in more oxygen. My question is that do those of us who have pooling really hyperventilate because we have blown off too much carbon dioxide by not controlling our breathing or is it just the body trying to make up for it not getting enough oxygen?

I actually do "control" my breathing while exercising. Pilates is exceptional for that. The "thing" is that I am not huffing and puffing or even breathing hard, but if I breathe at what others would find to be a normal pace, it is too fast for me. That is why my PT is saying for me to breathe at half speed....basically take one breath for every two of my partner's. Otherwise, I'll just shut down. So I'm really hyperventilating at a normal respiratory rate since my diffusion capacity, RBC/hematocrit is so high......I think

Erik, yup, it makes sense that way to me too! But I'm not going to go to yet another doc who'll do a cranial doppler ultrasound to find out exactly that and then go: "Hmmm, it's not normal, but it must be normal for you!"

My PT asked me to research brain O2 levels and exercise and basically came to the same conclusion from the stack of articles I gave her and the ones she found. When I exercise, my brain thinks it is getting too much O2 and shuts the entire system down! She has asked me to breathe at half the pace of everyone else she trains so that I don't hyperventilate. I go from aerobic to anerobic in less than 10 seconds and then into just can't do anything anymore. It is very frustrating!

Normal serum Osmolality is 285-295 mOsm/kg

You can calculate it with your normal labs using this formula:

Serum Osmolality (United States) = (2 x serum sodium) + (BUN / 2.8) + (serum glucose / 18)

SI units ares all molar, so no need to divide by 2.8 or 18 or 4.6.

Like TXPots said, this is a rough calculation and for me is incredibly inaccurate. When it is actually measured, mine is always higher than calculated. I have mine measured every 6 months to make sure that my dDAVP is not causing hemodilution. Mine is usually 293 on dDAVP, but has been as high as 304 after an overnight fast. Panic values for serum osmolality are values of less than 240 mOsm or greater than 321 mOsm. A serum of osmolality of 384 mOsm produces stupor. If the serum osmolality rises over 400 mOsm, the patient may have grand mal seizures. Values greater than 420 mOsm are fatal.

So super-concentrated blood results from our hypovolemia & our body's attempt to compensate for the subsequent hypoxia....If that's not enough oxygen, let's make the RBC's bigger- (high MCV) and let's make more of them (high MCH). I think the researchers can learn from us Thank you for your collective wisdom!

I still am curious about "thick" blood. Is that something we need to worry about? Do we need blood thinners more than healthy people to prevent heart attacks/strokes/clots because of our super-concentrated blood?

Julie, How thick is it? What is your serum Osmolality measuring? That is blood thickness. Mine is always high. It can have some side effects both long and short term, depending on how high your Osm is. Too high will cause seizures and coma, long term but slight elevations can possibly cause organ damage or blood clots.

The Hypernatremic issue was what they used for my no-diagnosis too.

Here's something from Wiki that explains the cerebral vasoconstriction and your issues as well:

Hyperventilation

Cat Lady,

I have low Estradiol, Testosterone, LH and FsH. My endocrinologist checked my hormone levels by taking blood at the same time, same day, each week for six weeks. All were low, he called them "barely adequate." My OB/GYN put me on Estratest (HRT) and now my hormones are actually within "normal limits" but still low. My endo says that it is perimenopause, but my OB/GYN says that since my FsH isn't high, it isn't menopause, but a pituitary issue. Birth control will suppress the LH and FsH, so your tests will appear "weird." I'd only worry if you are getting strange bleeding or none at all.

I agree with the theory of vasodilation and increased stroke volume during exercise. My POTS doc does as well. I wonder if the high expelled CO2 at rest is simply lack of oxygen rich blood being filtered out of the lungs at rest from reduced venous return? I don't understand the mechanics of the pulmonary circulation well. My physician claims to perform many of the metabolic stress tests on POTS patients and does not see my result. On the other hand, I am in better shape (during exercise) than the majority of POTS patients. I imagine this is due to the specific mechanism behind my particular POTS because I know many patients with POTS simply can not exercise or get much, much worse. I was in bad shape back in December. My heart rate was up in the 160s just standing up. I would try walking up and down our street to get moving. I was crying, gagging, and blacking out. My mom bought me a recumbent bike with a high back that was adjustable, and the improvement started relatively quickly from there. Never in my wildest dreams did I think I would be exercising for 2 hours a day. I feel great for about an hour afterwards and during my exercises, but at rest I am still so debilitated. Have you ever tried a rowing machine? It took me awhile to get used to it, but it barely raises my heart rate, and feel really wonderful while rowing. I think the seated position is helpful for POTSies.

It's interesting that we both have DI, high blood counts, excessive constriction, and 2 boys . Do you also have low aldosterone as well? I am on Florinef, but I can only take 0.1mg due to my blood pressure getting too high on a higher dose. Are you still on Inderal? I haven't tried a beta blocker, but I'm skeptical because I did not respond well to clonidine, which was a big surprise to all.

I actually talked to my PT about all this. She says that the high hematocrit will cause high diffusion and increased O2 turnover.....at a point. If I exercise, my HR goes too high and I get the double problem of a HR so high that there is actually less O2 available, plus (as my PT put it) your cerebral arteries are constricting in an effort to protect the brain from a "paradoxical state of too much 02." Basically, when I start out, exercise causes my HR to go up and because of the high RBC, I am good at O2 turnover. That high O2 turnover confuses the brain into thinking that I am hyperventilating and clamps down on my brain blood flow, which causes signals to speed the HR up further to compensate which actually does reduce the O2, at which point the brain shuts everything down......off the back I go! thud

I have lower than "normal" aldosterone and undetectable ADH. Two docs have said DI and two have said no. I am on a tiny dose of Inderal (20 mg once a day) but it doesn't do much for my HR when I exercise. I can get it up to 180 pretty quick, even supine (Pilates.) I have always been this way (aerobic exercise intolerant) for as long as I can remember. It never really stopped me till 2007 though. If I could just get back to before that point, I'd be happy. It takes me four days to recover from 50 minutes of exercise. I know muscle pain and fatigue, but this is ridiculous!

Count me in the high RBC, hematocrit and hemoglobin crowd. Mine has been high for several years now. The only time mine tested normal was when I was technically overhydrated from dDAVP (then my electrolytes were wonky!) I took B-everything when I had Mono several years back and then at my big POTS crash, but it never helped with fatigue. I finally got my bloodwork results from that time period and my b12 levels were 5 times higher than normal....I don't think I used any of it, it just built up in my system.

Firewatcher,

Thank you for the reply. I am still trying to get my hands on the official results of the PFTs, but I will be interested to see my lung diffusion capacity. You brought up some very interesting thoughts. My POTS began the last Saturday in May 2008 after an intensive swimming work out. I had symptoms from May-October 2008, but in the beginning, the symptoms only occurred after my mornings of swimming. To this day, I swear the swimming had something to do with triggering my POTS. I swam pretty intensively, and I wonder if I made myself hypoxic after these swims. My hematocrit and RBCs also run high. It has been this way since I have been 16, which is around the time I started displaying symptoms of DI.

Speaking of high elevations, I often describe my illness as constantly living with altitude sickness to my family. This is the closest I can come to a simple explanation for how I feel on a daily basis.

I'm sorry your HR is shooting up so high when exercising. This was me back in December, but now although my heart rate shoots up quickly, it stays pretty stable, despite a high intensity exercise program. I am baffled that I am able to exercise the way that I can, but I can not sit up straight. In fact, my respiratory quotient immediately improved when I started exercising. Weird.

I also explain "altitude sickness" to my docs. It fits my labs perfectly with what is going on. If I were living in the Andes, my labs would be normal.

I have had it explained to me as my body's adaptation to my brain's constant lack of oxygen due to vasoconstriction (just like my reduced kidney function.) I have wondered what would happen if I were to get O2. You probably feel better during exercise because of the systemic vasodilation and the increased stroke volume of your heart. If you are volume depleted from the "DI" like I am, it would make sense that exercise keeps things moving to your brain instead of settling in your lower half. I just wish my HR stabilized like yours with exercise. It is better if I am up and moving around at a leisurely pace, but once I push it , it seems like everything goes into overdrive.

I had a pulmonary function test a year or so ago and had a lung diffusion capacity of 230% of predicted. The only medical research that shows physiologic changes like this are free-divers and people living at high elevations (basically low oxygen environments.) My hematocrit and RBC are also high, but not high enough to create this type of change. I think that we are more anaerobic than normal people. The only time I have a hard time breathing is when my HR is higher than 160, at 180 the black spots and sparkles start dancing and above that I'm dry heaving. Unfortunately I go from 160 to 180+ within a minute or so. 90 seconds on a treadmill above 4mph and I'm shooting off the back!

Nela, all those things are governed by the autonomic nervous system. The Hypothalamus, pituitary and brainstem all control these functions. Dysautonomia is a broad, umbrella term for "we don't know what is wrong, but the controlling mechanism is out of whack!" Really, it is just a word to describe a lot of conditions.

POTS can do all that......especially if the brain and those parts of it are not receiving enough oxygen. Your brain is screaming at your body to send more blood and overwhelming the other systems. I have orthostatic hypertension, but that is just as bad: instead of my BP falling and me passing out, my arteries are constricting and reducing the blood flow even more while the high BP is damaging other organs. I think that the subtypes are both overlapping and different, so there is no way to figure out which is what until there is a better understanding of all the conditions.

Two of the herbs that I'll be trialling are licorice root and ginger from the TCM (traditional Chinese medicine) practitioner's suggestion (both of which are mentioned on the forum with good results.) There is a third that he wants to give me, but if it is prepared improperly it is deadly poison! ( A lot like rhubarb, the stalk is delicious, the leaves will kill you!) He openly mentioned that to me and that it has received a lot of bad press because of common, improper preparation. Because it acts on the central nervous system, it is sort-of the natural version of klonopin and neither of us want to mix the two. He has several degrees in TCM from both China and Japan and is has quite the mind. There is no way that I would take it without his specific oversight.

Many, if not MOST, M.D. Doctors will know very little to nothing about herbs and drug interactions. Few even know of the side effects of the drugs they prescribe! If you can find an open-minded pharmacist, they would be a better bet........or a licensed herbalist. I have a severely allergic reaction to ragweed, so I have to stay away from every plant in that family, my Primary doc doesn't even know what the plant looks like on the side of the road, much less which plants are close cousins!

Herbs are DRUGS, just like any other medicine. Keep track of what you take and when, in case of a strange reaction and make sure someone KNOW what you are taking!

Ramakentesh--I'd love to know how you are finding these herbs to try and what your results have been. Australian medicine is far ahead of the US in its acceptance of TCM and herbs as medicine.

How long does it take for the licorice to lose its effect? Have you found several that work better together than alone?

So was I and my response to the treatment options provided. for me these tend to work less and less with regular use, so i tend to rely on them for the periods when i need to be at my best only.

I brought this "tolerance issue" up with this guy and he explained it rather simply: the medicine works to balance an imbalance (that is when it works)......once a balance has been achieved, more of the same medicine brings about another, different imbalance. He said "the body is a constantly changing balance, therefore the medicine needs to change along with it." If something works for a while, then it is working, once it stops working it begins to create a problem that needs something else to "fix" it.

He also mentioned that he could not "cure" me, but that he could help. He mentioned epigenetics and I immediately wished I could get the two of you together.

I'm thrilled that you have found things that work! I've got too much of my Dad in me to let this post not have a cautionary tone to it though. Herbs ARE drugs, just like any other, except that there is often very little oversight into the preparation or accuracy of the dosage. If you have someone overseeing your dosage and KNOWS their effect (and antidote!) I think they are wonderful, possibly even "miraculous." However, if others of us just "take is because it worked for someone else," it can be really bad if not deadly.

I have great respect for your research and skill in "knowing your own body," but each of us is individual in our symptoms and responses. I'd love to know how these work for you and how you are finding each specific one.

I am about to try a few myself, but I have to get off the "Western herbs" first because of interactions. I don't need to add an herbal nervous system depressant on top of a pharmacological one!

What has been your level of improvement so far?

LOL. POTS seems so much easier to explain in terms of the TCM concepts of the body and its energy. The herbs I was referring to have not been mentioned on this website but ill mention them by the end of the year.

As an example - Panax Ginseng is an amazing herb - sure it is an adrenalin stimulant but at the time that it increases metabolism in a similar way to caffeine it also stimulates alpha 2 receptors like clonidine and also increases overall serotonin levels which in my experience always has beneficial effects. The next day i tend to crash so its a rely on at the time herb.

Another interesting herb is Kanna or Sceletium tortuosum. It is a potent serotonin reuptake inhibator and has proven effects in rebalancing the autonomic nervous system. In my experience its way ahead of any medication ive ever tried for POTS.

Valarian acts in an interesting way with POTS - it seems to act on NMDA receptors rather than true GABA receptors - improving symptoms without a detrimental effect on the autonomic balance or vasoconstriction.

I have a few others that currently Im still assessing but thus far they have proven highly reliable. Stay tuned!!

No kidding! I was shocked by the level of understanding and the list of "unlisted symptoms" that I had but didn't mention that this guy rattled off after the initial exam! He explained it in a way that made absolute sense (even by Western medical standards,) taking the entire body and mind and mood into account. Sometimes I wonder if "Western Medicine" isn't letting the "children lead the elders."