Noreen

"Doctor, I pass out when I stand up."

"Then don't stand up." Couldn't resist, Firewalker.

While standing for group photos in the ungodly heat at our 4th of July family reunion, my nine year old nephew overhead me telling my husband "I think I'm going to syncope." He said, "Auntie, if you are going to sink or pee, I think you better sink til the picture is finished."

From the mouth of babes...

That is funny. If you felt you might have burst out laughing leading to the latter!

{{{Hugs}}}}

The stress is incredibly hard and doesn't help your health at all.

Sending prayers and positive energy your way.

noreen

Issie, Pepto Bismol alone will not kill h. pylori. It needs an onslaught of double or triple antibiotics, along with Pepto. I've heard it is no fun to take! I also look very pregnant on bad bloating days.

Yeah, I know -- that's why the other suggestion for the natural antibiotic --Olive Leaf.

I tried it Issie. It didn't work.

Only the mix of antibiotics finally worked.

It sounds like you are very lucky to find a cardiologist who will work with a neurologist who has an interest in POTS.

hope they find something that

helps you

Thanks Lissy.

My hair used to be incredibly thick. After my spinal fusion surgery it fell out by the handfuls but eventually came backis time around in. This time around it has gone on for over 2 months.

I know the next batch of labs has thyroid on it. Who knows whether it will show anything.

I really am not sure if this new symptom is related to dysautonomia or not so I am posting in this forum.

I am losing a lot of hair. I used to have very very think hair and it has been falling out by handfuls. The rheumatologist says it is unlikely that the mtx would cause it after being on it for over a year. Running yet more labs but the ones from 6 weeks ago showed nothing.

Anybody have any experience or wisdom on this?

tks,

noreen

Shari-

I am a bit confused why you were taken off now. The drug is still on the market - it is not a safety or efficacy issue really - it's a paperwork reporting issue mostly. If you were deriving benefit from it you could still get it.

I was due for my next three month supply on the 17th and called the cardio's office. His nurse called it in to the drugstore - I never did talk to her as a partial supply was available at the pharmacy yesterday. That by itself is not unusual as they usually don't have 270 on hand.

Rama-

Yes, you're right as usual. I didn't know full history of drug at time of posting.

New press release from Chelsea therapeutics -

"CHARLOTTE, N.C., Aug. 19, 2010 (GLOBE NEWSWIRE) -- Chelsea Therapeutics International, Ltd. (Nasdaq:CHTP) announced that a new investigator-led phase II clinical study of Droxidopa, an oral synthetic precursor of norepinephrine, has been initiated in chronic fatigue syndrome (CFS).

.....

About Droxidopa

Droxidopa, the lead investigational agent in Chelsea Therapeutics' broad pipeline, is currently in Phase III clinical trials for the treatment of symptomatic neurogenic orthostatic hypotension (NOH) in patients with primary autonomic failure ? a group of diseases that includes Parkinson's disease, multiple systems atrophy (MSA) and pure autonomic failure (PAF). Droxidopa is a synthetic catecholamine that is directly converted to norepinephrine (NE) via decarboxylation, resulting in increased levels of NE in the nervous system, both centrally and peripherally. Droxidopa is also being studied for the treatment of fibromyalgia and adult attention deficit disorder in two ongoing phase II trials and completed a phase II in intradialytic hypotension (IDH) study with positive results."

http://www.stockmarketsreview.com/news/32812/

The drug is a goldmine for the company and they did not have to pay for mining since they got orphan drug status through FDA.

If the drug is even going to be tried it would have to be an off-label use if they are only given approval for MSA, PAF, and Parkinson's.

Is the drug in use in Australia?

noreen

Nina-

The new drug, droxidopa, has already been given orphan drug status in 2007. Makes it much easier for Chelsea pharm to pay for required clinical studies when the gov't foots the bill. It remains to be seen whether it will be released in Sept.

Would another drug for the same condition be granted that status? Unknown. The real problem for us is how long it takes us to get a drug that works and at a dosage that works. Droxidopa may prove to be an excellent drug given its mechanism but the studies are still ongoing as to dosage. How will it interact with other drugs is another question docs need to become familiar with.

For my last ulcer (over a decade now), my PCP put me on an antibiotic cocktail for H pylori without even testing for it. He consulted with a GI doc and, at that time at least, they said that H pylori is almost guaranteed to be present. Prior to this I would have an ulcer about every 3 or 4 years. As I said, after the cocktail, no ulcers - other stomach issues yes. Even with 6 years on steroids, I did not have an ulcer flare.

This was prior to the availability of the breath test.

Congratulations!

I was in a study on use of TENS units during labor for my first son 25 years ago. The tens unit definitely helps. I had my own TENS unit for the birth of my 15 year old and it was helpful. I used no drugs for either delivery however, I was in the hospital for 1 hr before the birth of my first son and 4 hours for the second. I now know my quick deliveries are from EDS - just letting you know the TENS didn't escalate delivery.

Might be worth thinking about a TENS instead of an epidural.

noreen

Me too. Although as your muscles develop with the routine, the standing is not really standing still. The tai chi master I took instruction with for 2 years did a tape on tai chi for wheelchair users. the exercises were excellent but the recording quality left a lot to be desired.

I have tried one other dvd on tai chi for wheelchair and found it was not as good as the exercises in the other so never stuck with it. One of my worst problems is that I could never memorize a routine enough to do it by myself without a class.

Kathleen

Sorry for all you have been through but glad you found this wonderful forum.

I am exhausted myself at the moment but thought I would pass on this article in hopes it will help you or your doctor in distinguishing what is going on.

Distinguishing seizure from syncope

wishing you the best

noreen

The new drug Droxidopa

http://www.entrepreneur.com/tradejournals/.../159502891.html

was granted Orphan Drug status in 2007 guaranteeing Chelsa Pharm exclusive rights for 7 years.

We are left to wonder what financial impact this will have on us and the ongoing studies the VA is doing to study use of Midodrine in spinal cord injuries.

It will definitely be a money maker for the mfg. They completed Phase II research in June on use of it in fibromyalgia termed promising . Yet with the orphan drug status they willl guarantee sole use of the drug for 7 years, have had their clinical trials paid for and had FDA fees waived. You have to admire the chutzpah to get a drug approved for one disease entity while haveing a huge potential market in your other pocket.

How many people in Japan have OI to account for a 50 million dollar business?

Vanderbilt is studying different drugs according to this -

http://clinicaltrials.gov/ct2/show?cond=%2...%22&rank=21

I hadn't run across this link for the Autonomic Disorders Consortium Participating c?linical Centers before so I am posting it here before I lose it entirely.

http://rarediseasesnetwork.epi.usf.edu/ARD...nters/index.htm

http://clinicaltrials.gov/ct2/show/NCT0097...c%22&rank=7

Amazing that a recruitment size of 20 is sufficient if correct terminology is used.

You know it seems Shire either overestimated the market or we lost out by Shire not getting tax incentives for clinical trials by not applying for Orphan Drug status. According to Wikipedia the status applies when patients are under 200 thousand.

Anyway you look at it, we lost out as we lose generic availability and our insurance companies kick up a fuss. The Clinical trials for midodrine are available at http://clinicaltrials.gov/ct2/results?cond...+Orthostatic%22

Rana-

Thanks as always for educating us.

If anyone else is ignorant as to the term hypocapnia.

http://www.ncbi.nlm.nih.gov/pubmed/16565300

Thanks for the update.

I guess energy should be focused on generic mfg.

Stace-

The only problem is for those of us who have sleep issues. Insomnia can be a bear and I try to be careful about things that interfere with sleep. My migraines have been wicked and, strangely, fiorinal keeps me up. More so than can be explained by caffeine content.

Do they have to pick on us - no alternatives and sensitive to everything!

Link to contact the FDA.

http://www.fda.gov/AboutFDA/CentersOffices...DER/default.htm

I also just saw on Dr Oz - treat your husband with the antifungal creams ... he could be the host

Or have everyone rx'd Nystatin

From here: http://www.medicalnewstoday.com/articles/197890.php

"The agency is working with the drug manufacturers to develop an expanded-access program to allow patients who currently receive the drug to continue to receive it. On a case-by-case basis, expanded-access programs allow the use of a drug outside of a clinical trial to treat patients with a serious or immediately life-threatening disease or a condition that has no comparable or satisfactory alternative treatment options."

Maybe there's hope?

I wonder what expaned-access program would look like and whether the insurance companies would continue to pay for a drug in that categorary.

I take 10mg oft the adderall XR and then once I feel like that is starting to wear off (which is usually around 1pm..depending on how early I take it), I switch and take 10 mg of midrodrine every 3 hours. The adderall makes a huge difference for me, the only thing, which I have never noticed is my bf always knows that I have just taken my meds because he says I talk a mile a minute for a little while right after I have taken the adderall, but it doesn't make me feel jittery or anything. Mornings are by far the worst for me and the adderall seems to make enough of a difference for me that most days I can get up and take a shower (sitting down of course), but I still have days like today that I am bed bound.

My experience too Stace except I take the short acting version but the time frames are the same.

My message directly from Shire says they will be discontinuing ProAmatine in September 2010 as a business decision. It goes on to say they are sorry if it is affecting my treatment plans.

Does this mean generics will be discontinued, also?

I am having an anxiety attack.

You can contact them here: medinfoglobal@shire.com

Anxiety attack here too.

A literature review article cites the efficacy of midodrine and bases some conclusions on unpublished data provided by Shire.

http://ndt.oxfordjournals.org/cgi/content/...amp;keytype=ref