MightyMouse

Ah, the test hangover. I know that feeling! My friend who took me for the test was waiting with my ziplock bag full of meds and a HUGE hot cup of coffee. I had to sit for quite a while after the test so that I could walk without crashing to the floor.

I know it was hard going off the meds, but at least now you have your diagnosis, and the paperwork will REALLY help a lot when you're trying to educate your local doctor(s) about your condition and/or need to have a doctor take you seriously (i.e. not calling you a depressed, stressed, anxiety ridden hypochondriac --which, btw, my family did to me too...and the doctors prior to my diagnosis).

Hang in there and here's hoping that your resulting treatment will help you to be much more functional daily.

Yes, we know. There's an announcement on the DINET.org main page showing the new address which is dinet.org/forums. The forums.dinet.org address should be up again soon, but as of this morning it was still down.

Nina

Rach describes my test pretty well; that is, off meds, I had a drop in BP so severe that they stopped the test about 5 minutes in... I was also fasting, no water, except for the sip I was permitted hours before the test to take my nexium. That was the ONLY medication I was allowed to take. Everything else effected either BP or HR or fluid retention, which in turn raises bp too. If you're getting this test to make an accurate diagnosis, then all those meds need to be out of your system... and some take weeks to wean from safely (I was on florinef and needed to wean off over a one month period, and then be clear of florinef for at least 14 days prior to the test).

Nina

My doctor and I had a 4 day rule--if I have an exacerbation of my syncopal or tachy symptoms, or other autonomic related issues for 4 days, I was to come in. Other than that, I chalked up to flares.

Libby, Adderal is also used to raise bp in some patients (just the way caffeine is also used), so it was on the list for my TTT as "do not take", along with coffee, tea and any drinks with caffeine. You shouldn't be on meds that are vasoactive, cardioactive, or cause you to retain fluids, like steroids, salt, etc. The only reason you would take a test like a TTT with meds would be following a firm diagnosis, and with meds, to see if the meds are doing what you want them to do.

Cozaar is PRN, so I don't take it every day. As I've gotten older, my veins and arteries are a little less stretchy and sometimes will shoot my bp way high, especially when it's cooler weather (so I don't have any major blood volume pulled to surface skin area like I do in the heat).

Think of dysautonomia as not just low bp, but for me completely disregulated bp... so, the Cozaar can add some stability when I need it.

I was on low dose of celexa before lexapro. Now I'm on 5 mg of lexapro. Both work well for me, with lexapro being slightly better. When I took myself off of it, I had horrible GI problems, lost motility altogether, and was having huge bp highs and lows, and tachy. Back on it, all of that stabilized. Not perfect of course, but good for me.

I don't like the neti pot b/c my neck is fused and it's hard for me to tilt the right way. Instead, I use a NeilMed rinsing system. It's a squeeze bottle and is able to get a good volume of fluid through the sinuses, rinsing out yucky stuff. Works great and my allergist wont prescribe meds unless you're already using it.

Nina

There is a group of physicians who may be able to provide the data that the FDA is opening for public access. This is just one step, and so far it doesn't look like the drug will leave the market place yet...at least not the generic versions.

I buy a POUND of tumeric at my local Asian/Indian/Pakistani grocery for about what you'd pay at the grocery store for a small container--I think the last time I picked it up, it was 3.99 for a pound.

Sophia, read again. It says that they intend to approve droxidopa as a substitute for midodrine. This would tend to lead one to assume that one would substitute b/c the other isn't an option. Also, a news article I got last week indicated Shire is probably going to drop production of midodrine. We'll see what happens is all I can say.

Nina

From

http://everythinggold.blogspot.com/2010/12/chelsea-therapeutics-nasdaqchtp.html

Chelsea Therapeutics (NASDAQ:CHTP) Regulatory Timelines Accelerated

With Study 306 no longer considered pivotal for Droxidopa NDA, the timeline for Chelsea Therapeutics (NASDAQ:CHTP) should be shrunk by a quarter.

Needham said, "Chelsea management announced this morning that, as a result of recent pre-NDA meetings with the FDA, the company now plans to submit a Droxidopa NDA based on data from only the first two Phase 3 trials (Studies 301 and 302). The ongoing Study 306 is no longer considered a pivotal study. This is expected to accelerate regulatory timelines by about a quarter, allowing NDA submission in 2Q11. The news appears to reflect interest by the FDA in finding a suitable replacement for midodrine, which the FDA is seeking to pull from the market. We caution investors, however, that outcome of the ongoing Study 306 is still likely to influence FDA review. Consequently, although we are favorably inclined with respect to Study 306 outcome, clinical trial risk (in addition to regulatory risk) still must be factored in the stock."

I was just recently told about a website called etsy.com where artists and crafters can sell their unique stuff. I like to make jewelry when I feel well enough, including my own personalized bracelets to clasp to my medical tag (I reverse engineered the first one I got from MedicAlert and then reconfigured it with a new bracelet that was prettier). I still have instructions on how to make your own medical bracelet on my personal webspace; easy and cheap. Also, MedicAlert now allows you to buy just the tag instead of having to get a combo bracelet and tag.

Nina

For me, my body makes no distinction between emotional and physical stressors. Both tax my system.

I've had the partial lung collapse in the past, as well as pleurisy so many times I lost count. You may want to investigate a collagen defect such as EDS or something similar. I don't have EDS but rather a gene related to dwarfism that causes many of the same collagen issues.

The pain probably had less to do with your heart directly than it did with the lung collapse.

As long as you're staying stable or improving, you should be fine. Did they give you any Rx's to take home, such as an inhaler or inhaled medication?

nina

Text from :

http://www.cardiovascularbusiness.com/index.php?option=com_articles&view=article&id=24881&division=cvb&division=cvb

From CVB (Cardiovascular Business):

In response to a letter from the Heart Rhythm Society (HRS) regarding the FDA's proposal to withdraw approval of the hypotension drug midodrine hydrochloride, the agency said there will be a public hearing for the drug manufacturer to present evidence of the medication's clinical benefit. The date has not been announced.

In addition, the letter, dated Oct. 4, said, "The FDA would soon announce in the Federal Register the opening of a public docket that will serve as a forum to facilitate communication regarding the conduct of clinical trials needed to verify and describe the clinical benefit of midodrine when used to treat symptomatic orthostatic hypotension."

The FDA on Aug. 16 proposed withdrawing approval of midodrine because neither the original manufacturer nor any generic manufacturer had provided data on the drug's clinical benefit.

The drug, marketed as ProAmatine by Shire Development and as a generic by others, was approved in 1996 under the FDA's accelerated approval regulations for drugs that treat serious or life-threatening diseases.

Under this process, a drug company may obtain approval based upon a surrogate endpoint. A surrogate endpoint is a clinical marker, such as a positive effect on blood pressure, believed to predict actual clinical benefits such as improved survival or decreased severity of the disease

That approval required the manufacturer to verify clinical benefit to patients through post-approval studies.

Recognizing the need to ensure drug safety and for companies to comply with post-market drug approval requirements, the HRS stated in its Aug. 24 letter that the FDA has not identified any safety or effectiveness problems with midodrine. Taking the drug off the market would "negatively affect the care of approximately 100,000 patients who are currently receiving this drug," the HRS said.

In its response, the FDA clarified that its announcement "does not represent actual withdrawal of the medication from the market," but is a necessary regulatory step that "reflects both the requirement that manufacturers of midodrine verify the clinical benefit of accelerated approval products and the agency's position that more data are needed about the actual benefits of midodrine."

The FDA said the drug will remain available to patients as it works to obtain the data.

HRS informed the FDA that electrophysiologists prescribe midodrine because it has "substantial effectiveness in the treatment of some patients who are seriously disabled by autonomic dysfunction and hypotension," as well as for patients with other clinical conditions.

There are few alternative therapies "except those with higher side effect profiles," according to the HRS letter.

The FDA said that the drug's manufacturer had conducted clinical studies, and other studies have been published in the medical literature. "The data submitted to the agency, however, have not verified the clinical benefit that the drug was expected to have."

Continuing, the letter said, "Because of the absence, after a very long time, of the required data confirming clinical benefit, the FDA recently notified the current manufacturers [of the proposal] to withdraw approval of the drug."

Last updated on November 2, 2010 at 12:49 pm EST

Hello Erika. I'm so glad that the treatments have made such a difference for you; it must feel incredibly gratifying to be able to do things like go to a part after the year you've had!

This topic has come up a number of times in the past. Try searching ANSAR in the search box on the upper right. Here's what I got.

Search Results: Ansar

Hi Chrissy, hugs to you. I don't know if this will make you feel better or worse, but I know a few medical doctors who have dysautonomia and I can tell you that they've had their own battles to get adequate medical care, to find even one doctor willing to treat them long term and/or believe them when things get bad. Some have had to travel thousands of miles to find adequate treatment. You would think it would be easier since they know the system, the lingo, etc., but that doesn't always mean they will be immune to the same pitfalls the rest of us go through.

Hang in there as best you can. Nina

I'm not certain why you'd just want to hear from Aussie patients who've tried midodrine... the drug is identical to the midodrine offered in other countries and it may be useful for you to hear the experiences of the hundreds of others on the forum who use it, or have tried it.

While I am in the US, I found midodrine to be exceptionally useful in bumping up my bp without getting it too high overall. The only downside for me was that I'd have to time my doses perfectly or I'd have a really big drop in bp rather suddenly; and I did get the common side effect of goosebumps that could occur anywhere on my body, including my scalp. For me, it was a good drug to help keep me able to function at work and home.

Here are some of my salty tricks:

salted nuts

beef jerky

olive

pickles

baked corn chips

all the dry items are good to keep in the car as a "need in a hurry" snack. I also usually keep bottled water in my car too so I can get the combo of fluid and salt whenever needed

Pers, I can usually get full text articles for the ones that are offered as paid subscription--Email or PM me with the citations you'd like (title, authors, year). I'm late with my tuition at grad school though, so sometimes they suspend my account until it's paid in full. For now, your doctors at the hosp should all have full access or at least get the gist of the article(s) from the abstract. You can search PubMed for abstracts too

http://www.ncbi.nlm.nih.gov/pubmed/

In order to get the school to do what your daughter needs, you WILL need either an IEP or 504 plan for her, probably with "other health impairment" listed as primary disability. The other option is what's called a 504 plan, which is similar to an IEP but not as broad in it's scope. If your school district is dragging their feet on getting these things done with you, you're also going to need to resort to doing EVERYTHING IN WRITING because that starts the timer ticking on their end to stay in compliance with federal disability laws. You can get free advocacy help if you need it by going to the OSEP website.

http://www2.ed.gov/about/offices/list/osers/osep/index.html?src=mr

LMK if you need more help. I work in public education as well as teach incoming teachers at the undergrad and grad levels.

Nina

Actually, there are several of you with hacked accounts. I occasionally get similar emails in my dinet registration account; I usually email the owner of the account with a notification that their computer is either infected with malware or a virus.

Ernie has stopped in here occasionally, and has noted she's doing much better and that's why she's not around here much any longer.