firewatcher

I am getting surprisingly good results from this doctor (technically he is not a MD.) I have managed to taper off my Klonopin by 1/3 already without the rebound headache. He would like to use traditional Chinese medicines on me, but we are both very cautious because of the possible drug interactions. This is why I'm attempting to get off the Klonopin. Many of the herbs that he has mentioned have been mentioned in other posts on the forum with success. The food adjustments are easier now and are becoming effective, my GI system is finally moving again! I'll keep everyone posted with my progress.

I had an awful weekend: I had PT for my shoulder (rotator cuff) and had a new therapist. This PT decided that I needed more range of motion stretching so he pushed me well beyond comfort into pain and caused a major ANS flare. I was sure that I'd be black and blue since the seat belt across my shoulder hurt. I was shocked when my new doc manipulated my arm and shoulder and placed a single needle at my wrist (I think he inserted that one) and the pain in my shoulder was gone! If that was a placebo effect I'll take it! It is still pain free today.

The biggest thing I like about this doc is that he treats me like a person, not a condition. I'm not a quirky illness to him, but a mind and a body with feelings. It has been so rare to find doctors who really, honestly want to heal and not just "treat the symptoms."

I have a terrible fear of using a nettipot... I'm scared that it would feel like choking on water? Lol. I do have lots of issues with my sinuses though. Chronic Rhinitis, sinus infections (about 4-5 a year), allergies, etc. My lung specialist put me on Avamys. It works well so far (when I remember to use it) but of course you have to take it all the time for it to work... I do steam treatments when I need them. I'm really curious about this nettipot thing though...

It took me several days of staring at my new neti pot to work up the nerve to try it. By that point, I was being ravaged by high fevers and almost through my second round of antibiotics and just suffering too badly. I was extremely pleasantly surprised, it was very good for me. There are certain things that make it easier: If you can get any air through a nostril start with that one, use as hot a water as you can stand (cold water is painful!) and start with the recommended amount of salt. Head angle takes a while to master, but you won't drown, if is drips down the back of your throat, adjust your head angle ) generally it is better to tuck your chin in to your chest before you bend at the waist. I have neti-ed for 8 years now and it has kept my sinus infections down to maybe one every three years instead of monthly.

My mother tried it and it made her very dizzy the first couple times, so you might want to sit on the toilet and hang your nose over the tub. My kids have used their own neti pots since they were 4 years old. My husband prefers the "rhino horn" and gets them off ebay.

There are several tutorials on youtube, if you want to watch first.

Good luck!

NO EARLY CLASSES!

I spaced my classes out too, that way I had time to take naps.

When I get muscle cramps, my potassium is too high. I've tried the sodium bicarbonate and it didn't do much for my soreness. Not much has so far.

Can I ask what he suggested you avoid?

I'm really thinking massage-at least hopefully it would feel good for a while.

I've got to preface this with the note that this was specific to me and my conditions.

He asked me to avoid cold, sweet and raw: no consumption of anything cooler than room temperature (I've had to do that for almost 3 years now,) no sweet foods (major cravings here) or drinks and no raw vegetables or fruits.

He also asked me to drink hot ginger tea and eat as many pickled foods as I could tolerate.

He specifically asked about my GFR (the Western indicator of kidney function) and if I was on any diet for that (I am--restricted protein.) He further asked me to restrict it to only 4 ounces of "mammal meat" a week and to get my daily protein requirements from other sources: nuts, tofu, legumes, chicken, etc.

According to this doc, in Chinese Medicine, the heart and kidneys are counter-balances, if one is overly active, the other will be under-active. This is also true in Western medicine as seen by the renin-aldosterone, adrenal and vasopressin affects on cardiac function. My guess is that the pickles are to increase sodium and water retention.

He also gave me two reasons not to take herbal medicines at this time: they would interact with what I'm already on and they would be too strong. He is trying to use food as medicine first and get my digestive tract back on line instead of all backed up.

I'll give it a go, but the pickled plums are NASTY...I think I'll stick with dills and olives.

Oh, he actually called this afternoon and asked if I had any side effects from my first treatment!

This doc is not your "typical" CM doc, he didn't grow up with it as a cultural belief and he is not Asian, he's American (so there was no communication gap.) He was eager to compare Eastern and Western diagnoses and was really excited about epigenetics (so he's not reading the typical literature!) Again he was very emphatic that he could NOT cure me, only help me. He was also very adamant that he would probably not ever use needles on me, that any puncture of the skin would cause the "fight or flight" response to be stimulated.

I've just gotten really frustrated by all but two of my docs saying: "that's the way it is, just live with it." (cardiologist) or "You aren't as bad as some people I've seen." (endocrinologist) or "Something isn't wrong, it just isn't right....but it must be normal for you!" (nephrologist)

Honestly, I did not think he would consent to treat me at all. I was surprised at the amount of time he took taking a history and then the things he told me to avoid (which he actually explained!) I'm not hoping for a cure, and I don't think that I'll be able to go off my meds, but if he can help with the pain/headache or the fatigue.....or even the constipation, I'll be pleased.

I actually felt pretty good for the rest of the day yesterday, with the exception of feeling like I've been punched in the left kidney. I still have that pain this morning, but I don't have the headache and my HR is lower than it normally is for this time of day (95bpm instead of 115.) I'll keep you all posted.

Since I seem to have exhausted my resources in Western Medicine with stagnant results, and I am unwilling to live at this level of function for the rest of my life, I am trying a different approach: Oriental Medicine.

Today I saw a Doctor of Oriental Medicine and Acupuncture. After answering some really strange questions and having an exam, he said I was actually in pretty good health for a train wreck! He understood the sympathetic/parasympathetic nervous system and many of my diagnoses. He said flat out that he could not "fix" me, but he could help by relieving my pain. He also did not do acupuncture on me, saying that the mere insertion of the needles would cause my ANS to go into overdrive and that my nervous system did not need stimulation. I just am not comfortable "upping the dose" of narcotics (Klonopin) that I am on to achieve the same results as before. I managed for years before without meds and would like to get back to that version of me. He isn't changing any of my meds, or even asking me to do so. He has his own pharmacy and is willing to talk to both my primary care doc and Dad (pharmacist) before he would want me to try anything herbal.

Instead of acupuncture, he used acupressure and I can feel a difference (could be placebo effect.) I intend to give this a go and see how or if it works for me. I'll keep you all posted if you'll give me any experiences you've had with Oriental medicine.

Thanks!

There is also a condition called Vasomotor Rhinitis, where the issue is NOT an infection or even allergic, but an autonomic swelling of the nasal passages. I have this as well as allergic rhinitis. If your sinuses are constantly swollen, it will mimic an infection but antibiotics and antifungals won't touch it at all. My allergist said that people who react with sneezing, stuffy nose and eye watering to strong smells or bright sunlight (I do to both) probably have vasomotor rhinitis. The goal with that is autonomic control and a daily effort to keep the swelling down. I neti every day to do this and have had far fewer episodes. Again it is treating the symptom and not the problem, just like everything else with POTS.

Hi Julie and welcome!

A lot of people come to this forum and don't realize that there is much more to the site. If you go to the main page of the site, you'll get brief summaries of most of the conditions we have here (far better than what could be explained in a post.) The waiting for diagnosis is the hard part! Keep asking questions, and keep good records for yourself! Plus, keep us all posted!

I use my neti pot every day, and more than once a day during allergy season. The wonderful thing about it is that it ACTUALLY is harmless and has no side effects! When I feel stuffy, I add as much sea salt as I can stand and use as hot of water as I can tolerate. I used to have sinus infections with every cold, but have cut them down to once every few years now!

Personally, I'd go for the second doc. She is at least looking and asking questions if she doesn't know the answer. Your other doc sounds like he's just managing and pacifying you. This is someone that you must TRUST WITH YOUR LIFE! If you can't talk to them and have a good dialog, then do you really trust them if you can't speak at all?

Did you ask if she wants you as a patient? I have asked this of both the cardiologists that I have seen. One said: "I'm willing to try as long as you are willing to be a guinea pig and keep reading." The other doc said: "Certainly, the goal is to keep you stable and I am happy to consult with your other docs and Vanderbilt if anything strange comes up." I've chosen the second doc, I'm tired of being a lab animal.

Sleep Med. 2010 Aug;11(7):714-720.

Autonomic alterations and endothelial dysfunction in pediatric obstructive sleep apnea.

Kheirandish-Gozal L, Bhattacharjee R, Gozal D.

Department of Pediatrics and Comer Children's Hospital, Pritzker School of Medicine, The University of Chicago, USA.

Abstract

The cardiovascular consequences of obstructive sleep apnea syndrome (OSAS) in children have started to emerge over the last decade. It is clear that the respiratory and sleep alterations that characterize this relatively prevalent condition induce substantial alterations in autonomic nervous system control, ultimately generating high sympathetic outflow and reactivity that reflect an imbalance between sympatho-excitatory and vagal inhibitory inputs. In addition to these important consequences, the constitutive elements of OSAS also elicit a rather extensive activation of systemic inflammatory pathways that in turn pose substantial risk to the integrity and functional homeostasis of the endothelial network. The complex interactions between the multiple injury-associated pathways recruited by OSAS are further compounded by the potential release of angiogenic factors and by the mobilization and homing of progenitor cells that have the potential to repair and restore the OSAS-disrupted vascular function. Improved characterization of the mechanisms involved in every one of these processes and identification of the determinants of susceptibility in pediatric populations along with the interactions with obesity will clearly modify our approaches to OSAS in the future. Copyright ? 2010 Elsevier B.V. All rights reserved.

PMID: 20620107

I wonder how many of us have undiagnosed apnea from childhood as our "cause" for POTS?

Thanks Firewatcher,

You know, I am terrified of the epi-pen since no one really told me how to use it. I have read the instructions over and over, but feel let down by the allergist who casually threw the prescription at me.

Sometimes they come with a practice pen, ask for one. If they don't give you one at the pharmacy, ask a nurse at the allergist's office to demonstrate it to you AND your son. You both need to know how serious this is. There is no harm in using it, my allergist always says "stick first, then think about it on the way to the hospital!" It will make him tachy, it is an induced adrenaline rush; and it is a potent vasoconstrictor, so his feet and hands may go numb, but it will save his life in an emergency. Get really familiar with it, it is not a simple "poke," but it needs to become a no-brainer for both of you!

My son is anaphylactic to milk and all milk products. He was doing an oral challenge to lactose (milk sugar) to see if he could take pills, since lactose is in most pills as a filler, and did great. The final challenge was an actual pill: amoxicillin, something he had before and would probably need again due to chronic sinus infections. He never got that pill down. He broke out into hives and his eyes swelled shut and the tip of his nose swelled! He looked awful. The allergist asked if he had ever had a reaction to it before and I told her "never." She said: "Well, he's allergic to it now!" She explained the immune/allergic system as a bucket, when it is full of allergens.....you react! It doesn't matter if he's had it before, he can't have it now. Sometimes, you can use food cycling to limit exposure (6 weeks with no fruits, and then small amounts for a limited time) but I'd just avoid it altogether. BE AWARE, if there is raw fruit in sauce or as garnish, he may react to it too. He might be able to stand cooked fruit, I have a friend whose son is horribly allergic to fresh fruit, but can have cooked fruit. He reacts the same way to wines, since the fruit isn't cooked before fermentation.

Allergy shots may help, but avoidance will be the big issue right now. Find a good allergist, you will probably need them. NEVER BE AFRAID TO USE THE EPI-PEN! Most allergy related deaths occur when people wait to use it, or don't go to the hospital afterward, so better safe than sorry!

My feet are usually freezing most of the day.....even while they sweat! I imagine it is like having slugs in my shoes, all cold, wet and slimy! My hands do this too. My neurologist pulled an intern in once to feel the temperature difference between my hands and forearm. Nasty, but normal for many of us. I even have both my hands and feet "go to sleep" when I walk and sometimes when I exercise. I wear socks to bed so that I don't shock my hubby in the middle of the night with my icy feet. Nothing ruins a warm snuggle like two cold, sweaty feet!

Doctors aren't Pharmacists, oftentimes they aren't familiar with side effects; especially if the side effects only occur in a small population. My primary doc prescribed an antibiotic for a sinus infection that led to me tearing my rotator cuff (I had been warned about achilles tendon rupture and to take it easy.) My allergist said that he would never prescribe that antibiotic because of the high incidence of tendon rupture with it, plus it doesn't work well for sinus infections anyway! I consult with my Pharmacist before I take any new medicine, especially if I'm having side effects.

Fantastic catch though! I hope it is all reversible and you feel better soon!

Shan,

Second opinions never hurt. If you are uncomfortable with a doctor, it is time to find a new doctor.

But........a cardiologist is a specialist, so they concentrate intensely on the heart aspects of health. You may mention the other symptoms, but most would just refer you to another specialist for them. They neither know, nor could treat other conditions/symptoms. It is a rare specialist that even asks about symptoms outside their "field". My Internal Medicine doc is the one I mention all the wonky stuff to; he NEEDS to know everything that is going on.

You are still going to have to wade through a lot, but here are two American sites:

American Holistic Medical Association

American Association of Naturopathic Physicians

My children's physician is a Holistic Physican, and my Chiropractor recommended a Holistic MD to me, but I did not go since I was pleased with my new Internal Medicine Doc (former Mayo.) Good luck!

I had extended hormone testing done by my endocrinologist. I had weekly blood draws: exactly the same day and time of day, each week for six weeks. They tested for LH, FsH, Estradiol, Progesterone and Testosterone. My hormones were all at the lowest point of normal or below. My endo called them "barely adequate." I am on hormone replacement and it has made a huge, positive difference for me. Having a sudden lack of hormones may help, or send you into a tailspin. Talk to your doc about it and be ready to ask for hormones if you NEED them. You can always wean off slowly.

When my husband was relocated by the military, it was several months before he could have housing, so he took an apartment and waited to get his stuff. He furnished the whole thing, dishes, furniture and all from Good Will or Salvation Army stores. I wouldn't get a bed or sofa there, but there is also a place called Big Lots that has really cheap stuff that is new. We have freecycle and Craig's List too, where locals list stuff they want to sell or give away. We are frequent shoppers at both, people donate some really good stuff sometimes and the money goes to a good cause. We also got a LOT of furniture from a local used office furniture liquidator, our living room set (sofa and chair) were practically new from a lawyer's office and we bought it at less than 1/10th of it's actual cost!

I got the lightbox. It has to be timed precisely to be effective, and when I used mine it was at the wrong time and really screwed me up! I just try not to mess with my hypothalamus anymore. I don't wear sunglasses until noon, and keep all the lights dim from dusk till bedtime. My sleep doc also was one of the first to note something was physically wrong with me.

This one just doesn't show up on a pubmed search at all! I was told my serotonin levels were fine, but according to that article, they are also low. Hmm. I know that I do not react to antidepressants well at all, I always got wicked headaches from every one of them. Maybe since I already constrict too hard, more serotonin just makes it worse. Weird.

Good research!

Unfortunately, I know why I feel like death-----some days it would be very welcome-----every morning. I have an untreatable, genetic, circadian rhythm disorder called DSPD (delayed phase sleep disorder.) Normal morning times for everyone else are the middle of my "night" and my body resists anything but sleep. I am in the middle of another attempt at a shift, to get ready for the school year, but have hit my shifting threshold; it won't go backwards from here. Imagine being forced to get up at 3 or 4 am every day, that is what anything before 8:30 am is for me . There is a natural circadian rhythm to heart rate and BP, that is why so many heart attacks occur in the morning; people ask their bodies to do what they naturally resist and it overtaxes the system. The tired but wired feeling for me is a combination of my sleep disorder and POTS. DSPD patients cannot sleep until their body says "sleep," no matter how little sleep we've actually had, so we lay there staring at the clock. Couple that with all the extra norepinephrine from POTS and there is no way to turn the brain into sleep-mode. I have found that since my BB destroys the body's natural melatonin, that I sleep better now than I ever have; I take supplemental melatonin at the correct circadian time and zzzzzzzzzz. Unfortunately, it doesn't help for mornings....as I sit here with a HR of 124+ and a BP of 122/101, waiting for the meds to kick in, desperately attempting to keep my eyes open.

As annoying as it may be, I would also suggest you see an endocrinologist. Other endocrine illnesses can create symptoms that look like POTS and cause heart issues. Get the full once over and then you'll know. Welcome to our orthostatic extended family! I pray it is something simple and treatable, even if it is rare, may it be known!

There's a big overlap and no real agreement between facilities on "sub-types." There are rough sub-types of orthostatically hypertensive or hypotensive. There are possible sub-types as to cause: post-viral, EDS, Mast Cell Activation Disorder, etc., but that won't really dictate a better treatment. The treatment plan depends more on your response to medication than your "type." I had my testing at Vanderbilt's clinic in Nashville. You could see Dr. Blitshteyn in New York. I was told that I had hyper-adrenergic responses to my ANS tests (orthostatic HYPERtension, tremor, flushing, and severe vasoconstriction.) Because I react with vasoconstriction, that type of drug, or one that increase norepinephrine levels would not be good for me. I respond very well (fortunately) to beta-blockers and meds that reduce BP, but even those have to be used with caution since I will go both bradycardic and hypotensive once I lie down.