firewatcher

I agree 100% that this needs to be placed right along side beta blockers, helps some, makes others worse and in no way should be looked at as a cure. This is my only point.

Amen, brother!

I get so tired of docs telling me that their way is the ONLY way there is and that the rest don't know what they are talking about!

Yes, this IS for real and it IS helping certain patients. The original group was very small and all their autonomic tests were normal. Dr. Levine IS conducting a much larger study currently and there are forum members who are participating. I was ready to apply when my GP forbade it (if I wanted to keep him as a doctor.) My ANS tests don't look anything like the patients in Dr. Levine's study, many of ours don't.

I know personally, that exercise helps, but it is no "cure," at least not for me. Dr. Levine's theory on this may not be the "right" one for some of us, but none of the specialists are any closer than he is. I think that much of the anger that has been generated by this study was his careless use of a cartoon name for a serious condition that has crippled many lives. Unfortunately, that carelessness simply promotes the idea that our problem is our attitude and not our bodies.

Hi everyone,

If any of you know of an active breast cancer support forum like this one, I'd appreciate it if you would let me know. My Mother in law has just been diagnosed and is scared to death! I belong to a kidney disease support forum, but it is nothing like this one. I'm looking for the same love and support that I get from here.

Thanks!

Jennifer

Dr. Levine actually published an "apology" of sorts on PotsRecovery.com. I believe he was hoping that it would spur recognition, not trivialization. Either way, it is like saying that exercise is a "cure" for obesity; if the obese patient stops exercising and does not change eating habits or genetic components (like Cushings) the weight will come back on. A CURE is an absolute cessation of symptoms after treatment is over, Dr. Levine's system is a life-style change that won't last once it is stopped. Two weeks of bed-rest will undo any gains that any of these patients have made and it will take a month (or more) of dedicated exercise to get it back.

Casper,

I am one of the Hyper-adrenergic POTS people. My BP goes up on sitting, and up more on standing. One of the things that helps me is hydration; the more dehydrated I am, the more my BP goes up. Paradoxically, if some of us with hypertension get saline, our BP and HR go down. I have also noticed that my HR and BP will go up before I get sick with a virus. It can take several days for the virus to show up as a cold or flu, but my HR and BP are high. With the different headache and the rise in body temperature, you may be getting sick with something. Try to drink more fluids and rest, but keep track of your changes. It may be a short-time thing or it may be a reason to go see your doctor.

Good inforation as long as you're orthostatic HYPOTENSIVE. You sure don't see much research on the orthostatic hypertensive group. Just as an aside, when I was first pushing to get a TTT my neuro told me you don't have POTS because you don't pass out..... I wonder if this is even being taught in medical schools yet?

Actually, Dr. Robertson at Vandy IS doing research into orthostatic HYPERtension. He has one older article out with a Nephrologist: When pressor reflexes overcompensate (Article link). And then there was another recent article, but I can only get it in abstract form. We are the minority of a minority and so less understood.

Hypertension. 2011 Feb;57(2):158-9. Epub 2011 Jan 3.

Orthostatic hypertension: the last hemodynamic frontier.

Robertson D.

Comment on:

* Hypertension. 2011 Feb;57(2):167-73.

PMID: 21199993 [PubMed - in process]

Orthostatic Intolerance/POTS

This is a really good overview and has "meat."

Hey Todd,

THANKS!

I guess consensus of any kind is a start, but I was hoping for more.

I'm wanting the full-text on this one too, consensus from these docs would be a rare and wonderful thing! If you click on each name, it only brings up the other articles they've written, not their statements (at least in PubMed.) If anyone has a doctor's appointment with any of these doctors, please ask for a copy and fill us in!

Before my dx and "proper" meds, I was taking 25-50mg of liquid Benadryl every 4-6 hours. It never sedated me, but then it never had. I was told that Benadryl has some yet unexplained effects on the central nervous system, it's antihistamine properties are actually more of a byproduct. Until the Propranolol, it was the only thing that would control my tremors. The liquid works faster than the pills. I keep a LOT on hand since my son has severe allergies.

For post-viral onset, certainly this makes sense, but for us genetic types there is some mutation at work. The entire female line of my family has DSPD and my son has it as well. My mother and grandmother showed minor signs of autonomic dysfunction from fainting to migraines, but nothing like what I exhibit.

There are several things that may be at work with us. I have a genetic circadian rhythm disorder: Delayed Sleep Phase Disorder-basically, my body clock is eternally set about 3-4 hours behind everyone else. Move me to the West coast and the same thing will happen. When my sleep doc and I tried to shift it, BAD things happened. The only good thing that came of it was a correct diagnosis of POTS. He is absolutely convinced that there is a hypothalamic dysfunction at work in all of this, from the sleep disorder to the whole POTS thing. Unfortunately, very few endocrinologists even go far enough to have more than a basic understanding of any hypothalamic issues since there is almost no treatment other than to replace the missing hormones.

An Overview of the Hypothalamus from EndocrineWeb.com

The Endocrine System’s Link to the Nervous System

Written by Kelly M. Rehan

The Hypothalamus Essentials

* The portion of the brain that maintains the body’s internal balance (homeostasis).

* The hypothalamus is the link between the endocrine and nervous systems.

* The hypothalamus produces releasing and inhibiting hormones, which stop and start the production of other hormones throughout the body.

The hypothalamus plays a significant role in the endocrine system. It is responsible for maintaining your body’s internal balance, which is known as homeostasis. To do this, the hypothalamus helps stimulate or inhibit many of your body’s key processes, including:

* Heart rate and blood pressure

* Body temperature

* Fluid and electrolyte balance, including thirst

* Appetite and body weight

* Glandular secretions of the stomach and intestines

* Production of substances that influence the pituitary gland to release hormones

* Sleep cycles

The hypothalamus is involved in many functions of the autonomic nervous system, as it receives information from nearly all parts of the nervous system. As such, it is considered the link between the nervous system and the endocrine system.

Anatomy of the Hypothalamus

The hypothalamus is located below the thalamus (a part of the brain that relays sensory information) and above the pituitary gland and brain stem. It is about the size of an almond.

Hormones of the Hypothalamus

The hypothalamus is highly involved in pituitary gland function. When it receives a signal from the nervous system, the hypothalamus secretes substances known as neurohormones that start and stop the secretion of pituitary hormones.

Primary hormones secreted by the hypothalamus include:

* Anti-diuretic hormone (ADH): This hormone increases water absorption into the blood by the kidneys.

* Corticotropin-releasing hormone (CRH): CRH sends a message to the anterior pituitary gland to stimulate the adrenal glands to release corticosteroids, which help regulate metabolism and immune response.

* Gonadotropin-releasing hormone (GnRH): GnRH stimulates the anterior pituitary to release follicle stimulating hormone (FSH) and luteinizing hormone (LH), which work together to ensure normal functioning of the ovaries and testes.

* Growth hormone-releasing hormone (GHRH) or growth hormone-inhibiting hormone (GHIH) (also known as somatostain): GHRH prompts the anterior pituitary to release growth hormone (GH); GHIH has the opposite effect. In children, GH is essential to maintaining a healthy body composition. In adults, it aids healthy bone and muscle mass and affects fat distribution.

* Oxytocin: Oxytocin is involved in a variety of processes, such as orgasm, the ability to trust, body temperature, sleep cycles, and the release of breast milk.

* Prolactin-releasing hormone (PRH) or prolactin-inhibiting hormone (PIH) (also known as dopamine): PRH prompts the anterior pituitary to stimulate breast milk production through the production of prolactin. Conversely, PIH inhibits prolactin, and thereby, milk production. Thyrotropin releasing hormone (TRH): TRH triggers the release of thyroid stimulating hormone (TSH), which stimulates release of thyroid hormones, which regulate metabolism, energy, and growth and development.

Hypothalamic Disease

A disease or disorder of the hypothalamus is known as a hypothalamic disease. A physical injury to the head that impacts the hypothalamus is one of the most common causes of hypothalamic disease.

Hypothalamic diseases can include appetite and sleep disorders, but because the hypothalamus affects so many different parts of the endocrine system, it can be hard to pinpoint whether the root cause of the disorder is actually related to another gland.

In particular, the hypothalamus and pituitary gland are so tightly connected that it’s often difficult for doctors to determine whether the condition is associated with the hypothalamus or pituitary gland. These are known as hypothalamic-pituitary disorders. However, there are hormone tests that help shed light on which part of the body is the root cause.

The hypothalamus is arguably the most essential of the endocrine system. By alerting the pituitary gland to release certain hormones to the rest of the endocrine system, the hypothalamus ensures that the internal processes of your body are balanced and working as they should.

Reviewed by Robert M. Sargis MD, PhD

Last updated on 01/11/2011

First published on 06/05/2009

Welcome to our dysfunctional family! Sorry that you are here, but glad you found us.

I'm a Hyper-POTSy too and I also have kidney issues. Does your doc know what your "issue" is, or is it CKD of unknown cause like mine?

The cramping could be sodium related, but I have no clue. I am going through the electrolyte balancing act right now myself.

Sorry I could not be more help, but you will find more answers here than a dozen docs could give you.

Aw shucks! Thanks!

Up until several years ago, my literary knowledge was mostly fantasy and sci-fi, it seems to be medical journals and clinical study reports now. I'd love to get back to the Weir and make all this my "dark" period.

How did you find this old post?? I can't find anything older than May 2010. I've searched different topics and only can go back a year.

I put in insanely narrow search parameters because I knew what I was looking for. I can't get further than last year on general searches though.

Eventually, I think that POTS will be seen more like diabetes. There is a certain dysfunction, the pancreas in diabetes, who knows what in POTS, that has multiple causes: autoimmune or genetic in type I diabetes and weight induced in type II. The treatments are similar for both, but while one can be controlled through diet and exercise, the other cannot. BOTH types lead to heart and kidney failure eventually and it is usually dependent on the tightness of symptom control.

With POTS and CFS, I believe that we will find that there is a post-viral and a genetic (or epigenetic) type, but that both will have end organ damage if poorly controlled.

We simply don't have the long-term information or studies for POTS and CFS that we have for diabetes. Unfortunately, WE are the guinea pigs and there are very few of us who feel like volunteering! On Research Match.org, there is a very small pool (40 people) of POTS patients.

There is a circadian (daily body clock) rhythm to heart function and BP. That is why most heart attacks happen in the morning and why our stuff is usually worse in the morning. The usual HR and BP spike of getting out of bed is magnified into total wonkiness with POTS. There isn't much that will make it better, other than taking your meds an hour or so before you have to get up and morning fluid loading. It is "normal" physiology unfortunately.

A meatier explanation and discussion of POTS-flow.

For those looking for information.

Low, normal and high flow POTS are sub-categories that Dr. Julian Stewart uses, but are not generally accepted by other POTS specialists. Hyperadrenergic, neuropathic, and post-viral are other terms that are also sub-categories from other specialists. Usually the search function (top left of this page, in the dark blue band) is great at giving more information, but it doesn't seem to be allowing searches past last year. If I get some time, I will try to find old posts that explain these, but here is a link to Dr. Stewart's site:

Dr. Stewart's findings in POTS

Funny, Doc, I don't seem to have any of these problems in the higher gravity of my home planet, Pern...

Sandy

(extra credit if you recognize the planet name from the books, gatorade shots to the first correct guess! )

Anne MacCafferty-Dragonriders of Pern

I guess something came back high in my urine a couple times. really bad face flushing. HE talked about it. but i had a bad episode about a hour before my appointment having some bad brain fog. If i would have thought about it. i would have brought something to record him. He said he personally will be calling me within a few days. I will ask him then. If i knew what i was looking for i have my medical records right here.. lol

He may have seen an elevated tryptase or methylhistamine level.

A question for all of you with EDS: can you make calluses on your hands or feet?

I have never been able to develop calluses on either, the skin just tears away after a blister or repetitive motion. Is this an EDS thing?

Thanks!

haha how do you tell that to the doctors??

It was an ER doc that suggested it! He superglued my son's chin back together.

First of all, Excedrin migraine is the same as the other Excedrin. I don't know how they can market it differently when it's the same thing! If I'm getting what feels like a tension headache, I try Excedrin or ibuprofen. Ibuprofen seems to help some people with migraines. I wish it did with me.

Like Bev, I'm getting the same amount of migraines each month. I'm going off birth control asap. Even though my doctors keep telling me I"ll get more headaches, mine have worsened since being on the pill. I've tried numerous preventative pills with just side effects and no relief. So far, the only that really helps is Imitrex

I also get deep tissue massages and I'm trying accupunture. I've only gone 2 times but I'm really hoping it will help my head or my neck and back pain. It's worth a try. I also have my wonderful brother who is a physical therapist and works on me from time to time and gave me exercises. I don't know what I would do without him!

Just one more comment about over the counter medications - people are always so concerned about taking prescription meds but meds like Excedrin and Motrin can be just as damaging if you take them too often. You can get rebound headaches from Excedrin but not from Imitrex. At least that's what my doctor told me.

Hope you find some relief. It's so hard on your body to be in pain.

Brenda

I totally agree with this! Since starting acupuncture six months ago, I have had tremendous relief from my headaches. If you can find an experienced practitioner, they can be miracle workers.

On the OTC meds, I agree as well. Many of these drugs would not pass FDA testing now (not that it really counts for much) and there has been quiet probing done to see how many of the NSAIDs can be pulled from the marketplace due to organ damage from overuse.