firewatcher

I have POTS, but I also have high blood pressure when upright. My endocrinologist almost prescribed Midodrine to me in error. My doc at Vanderbilt had previously told me that I am not to take any drugs that would raise my BP or norepinephrine levels (SSRIs.)

WHY were you prescribed Midodrine in the first place? If you have a history of BP drops when standing (orthostatic hypotension) then Midodrine might be appropriate for you. I would not take it without fully understanding why it was prescribed for you, from the doctor's own mouth.

I agree with Simmy's suggestion of getting a BP cuff. By using it, you'll become more accustomed to how you feel when your BP is high, low or normal.

Lots of docs will just skim a few articles and throw a medication at you without fully understanding the complexities of POTS, so YOU will have to know yourself well enough to help your docs to help you.

Thanks Sara!

I was hoping that it would provide better coping strategies than we already have.....dang!

Headache is on the top three list of most debilitating symptoms for me too.

Can anyone get a full text pdf of this article? I really want to know if they found any good treatment strategies for these headaches, plus I want to give it to my neuro.

Thanks!

Orthostatic and non-orthostatic headache in postural tachycardia syndrome.

Khurana RK, Eisenberg L.

Cephalalgia. 2010 Sep 6. [Epub ahead of print]

Union Memorial Hospital, Baltimore, USA.

Abstract

Objective: Orthostatic and non-orthostatic headache spectrum was prospectively studied in 24 consecutive patients with postural orthostatic tachycardia syndrome (POTS).Methods: Patients were interviewed about clinical aspects of headache and its precipitation during head-up tilt (HUT). Autonomic functions were assessed using a standard battery of tests. The relationship of orthostatic headache to cardiovascular variables was examined using unpaired two-tailed t-test.Results: Orthostatic headache occurred during daily activity in 14 patients (58.3%) and during HUT in 15 patients (62.5%). Age under 30 years and increasing duration of tilt were predictive for orthostatic headache. Of the 24 patients, 23 (95.8%) had non-orthostatic headache fitting the criteria of migraine or probable migraine.Conclusions: Orthostatic headache affected two-thirds of POTS patients, especially those under age 30. Patients with orthostatic headache should be clinically assessed for POTS and informed of this association to reduce short-term morbidity. Migraine afflicted almost all POTS patients. This co-morbidity should be considered in management of POTS.

PMID: 20819844

Reen,

I developed convergence insufficiency just before my biggest POTS crash in 2007. It has corrected slightly, but I find that wearing +2 reading glasses helps a lot. My left eye just won't move inward by the end of the day. I KNOW that Klonopin has effected my vison, since taking it on an empty stomach will cause my eyes to "lag" in moving: I'll look one way, but my eyeballs won't immediately move in that direction.

I get the overstimulated thing too: can't have a conversation if the TV is on, can't go out to a mall, too many colors will confuse me.....forget florescent lights! My only fix is avoidance.

If vaccines caused my autonomic dysfunction, it must have happened when I was too young to remember it. I have wondered about getting the flu vaccine or traveling to other countries because of the following two abstracts. These are the two most relevant studies on how the immune system response plays with the CNS:

Does an acute inflammatory response temporarily attenuate parasympathetic reactivation?

Jae SY, Heffernan KS, Park SH, Jung SH, Yoon ES, Kim EJ, Ahn ES, Fernhall B.

Clin Auton Res. 2010 Aug;20(4):229-33. Epub 2010 May 1.

Department of Sports Informatics, The Health and Integrative Physiology Laboratory, University of Seoul, 90 Jeonnong-dong, Dongdaemun-gu, Seoul, 130-743, South Korea. syjae@uos.ac.kr

Abstract

PURPOSE: Although observational studies suggest that inflammatory markers are associated with autonomic nervous system function, the causal relationship of this is not clear. We tested the hypothesis that acute inflammation will temporarily attenuate vagal reactivation as measured by heart rate recovery after exercise.

METHODS: In this double-blind randomized study, 24 healthy subjects were assigned to receive either an influenza vaccine (n = 15) as a model to generate a systemic inflammatory response or a sham vaccine (n = 9). Heart rate recovery after exercise testing was used as an index of parasympathetic nervous function and was calculated as the difference between maximal heart rate during the test and heart rate 1 and 2 min after cessation of exercise. Both blood analysis and treadmill exercise stress tests were conducted before and 48 h after each vaccination.

RESULTS: Inflammatory marker, log C-reactive protein (1.9 +/- 1.2 to 2.8 +/- 1.4, p < 0.05) was significantly increased after the influenza vaccine. Heart rate recovery 1 was significantly attenuated 48 h after the influenza vaccination (23.4 +/- 6.4 to 20.5 +/- 4.9, p < 0.05) but not sham vaccination.

CONCLUSIONS: These findings show that acute inflammation is associated with a temporary deterioration in cardiac autonomic nervous system function in healthy subjects. *I wonder what it is doing to US? (since we wouldn't be considered "healthy subjects.)

PMID: 20437076

Postural tachycardia syndrome after vaccination with Gardasil.

Blitshteyn S.

P Eur J Neurol. 2010 Jul;17(7):e52. Epub 2010 Apr 9.

MID: 20402758

I had my first Tai Chi class today. I've been taking Pilates for almost two years now and it will wipe me out for 3 or 4 days after. Right now, I feel like I haven't exercised at all: my legs are getting VERY sore. I did get flushed and shaky while doing it and I was constantly moving and not in a deep, low stance. I am not sure that I will be able to continue if I get as sore as I think I am going to be.

As easy as it looks, it isn't.

FANTASTIC!

Rest up and heal quickly, I know that was a scare!

Here in the US, we have NORD (National Organization for Rare Disorders) but they do not have a "report for this condition." The problem with joining with a national organization is that DINET would probably have to give up autonomy and meet some bureaucratic policy stuff that might hinder the freedom found on this site. I would guess that Michelle has probably looked into this already and has a good reason not to affiliate with a bigger organization.

I second the (WELL DONE MICHELLE!)

from ADA.gov:

"An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered."

I don't know what kind of hoops he and you would have to jump through for the "title," but with this definition, I'd think most of us would qualify.

From Ask.com:

Who Qualifies as Disabled?

Having a chronic illness like FMS or ME/CFS doesn't automatically qualify you as disabled. To be considered disabled under the ADA, you must:

1. Have a physical or mental impairment that substantially limits one or more major life activities.

2. Have a record of such impairment (such as medical records or a letter from your doctor).

3. Be regarded as having such an impairment.

Major Life Activities

The scope of what's considered a "major life activity" was broadened as of January 1, 2009. The ADA provides two lists -- one of basic abilities and one of major bodily functions.

Basic abilities include, but are not limited to: caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating and working.

Major bodily functions include, but are not limited to: functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine and reproductive functions.

The 2009 amendment specifies that these impairments do not need to be readily apparent from looking at or talking with someone. It also covers you when your symptoms are in remission, as long as you'd be considered disabled when symptoms were active. This is especially helpful for those of us with FMS and ME/CFS who have flares and remissions.

If they are going to make such a big deal about their concentration on rare diseases, they need to be held to what they say!

Here is the letter I emailed to CR@Shire.com

Mr. Angus Russell, Chief Executive Officer

Ms. Tatjana May, Chair of the CR Committee

Shire Pharmaceuticals

725 Chesterbrook Blvd.

Wayne, PA 19087-5637

USA

Mr. Russell and Ms. May,

Shire Pharmaceuticals has made it a part of its Corporate Responsibility agenda to be at the forefront of awareness of rare diseases and the specialty drugs needed to treat them. As a patient with a rare disease, I heartily applaud your efforts. I know, firsthand, the ?particular challenges facing people with rare diseases.? This kind of forward and compassionate thinking is what is needed to provide the necessary research and development of new therapies to treat many of these poorly understood conditions.

However, Shire?s recent decision to pull Proamatine from the market, while may be good business, is poor practice of your stated goals. As Mr. Russell said in a recent interview, Shire is ?not about sales and marketing? like the rest of Big Pharma. This drug is the only drug that treats hypotension and is vital to the daily functioning of many people. Though, we may be a small part of your profits, Proamatine is a large part of our treatment regimen.

Please continue to advocate for the treatment of rare diseases. Please continue to practice what you put in your CR Report and support innovation to address unmet needs; continue to manufacture Proamatine. Please live up to your motto: ?to be as brave as the people we help.? I have no choice but to be brave; I live with this condition every day. You have the luxury of choosing to be brave.

Thank you,

I have migraine without aura, but colors, smells and sounds intensify before an attack. I know one is coming when everything looks like technicolor.

This article might point to the connection between our brains and dysautonomia:

http://www.sciencedaily.com/releases/2010/06/100623085526.htm

sorry I can't create a link.

http://www.shire.com/shireplc/en/CorporateResponsibility

Sorry, I can't figure out how to post a link with this new forum.

This is Shire Pharmaceutical's Corporate Responsibility statement. On page 4 of 32 it mentions their stance on "Orphan Drugs: Improving the health of every patient" and how they are an industry leader in innovation of availability for drugs treating rare disorders. I think we qualify.

The rest is all warm and fuzzy about all the good they are doing within communities, etc...

My reason for posting this is that by targeting their own Corporate Responsibility Policy in our letters and emails to Shire, it might create a big win/win for all of us: raising awareness of our "rare" condition and possibly getting better treatments AND giving them good press! Just because the FDA is reversing itself doesn't mean that it would be profitable for Shire to continue to make Midodrine, unless it gives them a PR boost.

Just a thought.

Firewatcher, according to the article, Shire has changed their position too and will continue to make ProAmatine.

"On Friday, Dr. Jeffrey Jonas, Shire?s senior vice president of research and development, said the company had changed its stance and would appeal. ?There is substantial evidence the drug does work,? Dr. Jonas said."

Rachel,

I guess I'm just cynical, but that could simply be a "canned response" brought on by the bad press and pressure. Since they decided to stop selling the drug a year before the FDA "withdrew" it, I'm guessing that they are looking to unload the rights to someone else. This is a political move and politicians (even MDs) will say ANYTHING you want to hear. Actions are completely different. The NY times got several factual elements about POTS wrong for the sake of brevity and completely excluded the other uses for Midodrine like dialysis and the elderly, so I question the context of the quote from Dr. Jonas at Shire. They could be appealing to save face and still not continue to manufacture the drug. Until we know that the drug will continue to be manufactured by some company, I wouldn't stop squeaking.

I wouldn't relax yet, Shire may not continue to sell Midodrine and it may be only the generics. Until we know that one of the generics will continue (despite the small profits...) we need to keep squeaking!

Groups with that much power (to have lobbyists, fundraisers, etc.) effect a lot more people than we have. The American Diabetes Association was started by 28 doctors, 60+ years ago. Right now, WE might have 10 doctors who might agree on the term POTS, but not on treatment or presentation. So far, too few have been stricken and even fewer know anything about it! If some multi-billionaire has a daughter that becomes diagnosed with POTS, we might get something thrown at it, but for right now it is hard enough to get our families, much less our doctors to even recognize that this IS an illness.

We have the best we can get, right now...

As awareness slowly spreads and understanding is gained, we might see more interest, but I hope and pray that this "syndrome" never gets a big enough population to warrant that kind of firepower.

Can we attempt a greater awareness? Sure, but that takes a lot more time and dedication than any of us could possibly give.

sorry if I'm a wet blanket.

I have low-normal renin and aldosterone.

I have high-normal cortisol, but it does not double with stimulation.

I am also on a VERY steady diet (my son has a severe food allergy, so I make almost all of our food from scratch and we can't really eat out.) I take in an average of 1750mg of sodium a day and without dDAVP, I go hypernatremic with fluid deprivation.

I have orthostatic hyper-tension with tachycardia and hyper-adrenergic responses to my ANS tests.

Where do I fit in your research?

((((Rachel))))

Could any of it do with sleep deprivation? I am a total basket case when I am sleep deprived, and I cannot think of any bigger drain than two little ones. I spent most of their baby years in a complete fog. The other thoughts were thyroid or mono. Just get it checked out, maybe it is fixable. Children are a huge, ever-increasing strain on your time and energy and it can wear you down to nothing (almost there myself.) If I had any extra energy, I'd send you some...

Firewatcher--I know we've talked about the ADH issue. I just wanted to say that I, also, can concentrate urine with my lowish ADH. That is kind of strange--any thoughts on why we do this? I can drink my usual 100 oz. of liquids and pee all day, but still make yellow urine.

Also, I have been to an endo all along for my POTS. I initially thought Addison's right away, and then with the higher b/p on standing, we tested for Cushing's. Then I learned some more, and we looked at aldosterone, parathyroid, and finally ADH. The two stand-outs were the aldosterone and ADH, but be darned if a dr. would address them correctly and thoroughly!!

I drank my 100+ oz. of daily liquid before and always had absolutely clear urine. My urinalysis always came back flagged as being too dilute. I only concentrate when on dDAVP or when severely dehydrated (serum osm. > 300.) I don't have a pituitary bright spot either. I know I have always had POTS, but not the polyuria, that began in winter of 2007 suddenly. I believe the lack of bloodflow or eventual chronic lack of bloodflow to the pituitary and hypothalamus eventually deplete or damage those glands and that causes the endocrine wackiness. Even with no ADH, the other pituitary hormones will pick up the slack. Melatonin, something I don't make either, will assist the kidneys in urine concentration. I did not know this before my formal H20 deprivation test, or I would have never taken it the night before.

I believe the reasons that the docs don't address these issues is simply a lack of knowledge about the whole endocrine feedback system. We just don't know enough about all of it, even in healthy people!

Issie,

you are missing a hormone or two: vasopressin (ADH) and oxytocin...plus melatonin if you really want to complicate things. I have no detectable ADH and never have, even when highly dehydrated. I could, however, concentrate my urine when severely dehydrated (not technically possible without ADH, but it happened.) My renin and aldosterone are low normal. Melatonin and oxytocin also effect renal concentration ability, but in unknown (so far) ways. I do not do well on a high salt diet, once I begin to dehydrate, I'll go hypernatremic (too much sodium.) I also have upright hypertension and tachycardia, but supine hypotension and bradycardia. Baroreflex is also involved and hypertension will cause the kidneys to "think" paradoxically. Endocrine issues are not fully investigated for POTS, so you are digging in some murky, medical depths. Good luck and keep digging!

(((((((((Nina)))))))))

Good vibes and many prayers coming your way. It is so hard to wait for stuff like this! It also seems to hit all at once. Be especially good to yourself, you certainly deserve it!

I began taking Klonopin for the persistent daily headache that occurs with my POTS. It was the only thing that helped, but I kept having to up the dose for the same effect. My neuro kept telling me to "just increase the dose...." and you know where that will get you! Addicted and in the same mess you were in to begin with! I am trying to come off since acupressure/acupuncture is having good results for the pain without the addiction. My acupuncturist is also a TCM "doctor" (not a MD here in the West and uses herbal pharmacy instead of "drugs.") He thought I might have better symptom control with fewer side effects. I am going to give it my best shot before I resign myself to a lifetime of drugs, which is all my current MDs are offering. The beta blocker has helped me with the sympathetic surges, but it really doesn't work as well without the C-pam. I can always go back on it, but I want to try this route before I just accept daily pain.

It is really hard....I feel your cravings!

I am doing the Klonopin withdrawal thing right now. I know all about the body screaming for its "fix." All I can say is take it slow and gentle and don't taper down again until you have no side effects from the last taper. It takes me six weeks minimum to come off .75mg a day. They are nasty little drugs. I feel for you! Just be as good to yourself as you can and take it REALLLLLLY slow!

Heart.org article on Midodrine

Hooray for the doctors! There actually is a battle with the FDA going on over this and it sounds like there might be a glimmer of hope!

merriam-webster medical dictionary

Yes, it is a medical term. Most of my docs refer to it as autonomic dysfunction. The medical code that is on my checkout sheets says autonomic dysreflexia (?) though that is not entirely accurate.