Noreen

Don't forget their motto-

To be as brave as the people we help.

The icon for links is next to the smiley face. The new forum doesn't put links in blue, however, it just underlines them.

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

One of my letters to congressional reps focused on dialysis use of midodrine. Dialysis is covered by the Federal gov.'t under a law signed in 1972 by Pres. Nixon. I pointed out that if they withdrew the drug, how many portable dialysis machines would they have to provide dialysis patients? I also pointed out that the gov't is currently paying for clinical trials of midodrine with spinal cord injuries as VA hospitals. Of course, let's not leave out NASA's use of the drug as astronauts re-enter the atmosphere. If anyone is studied and documented it is definitely the astronauts (bet they got name brand and not generic, too).

It is strictly a matter of no one in government being willing to gather the information they have. My recollection is that the VA trials have endpoints identical to what the FDA required of Shire (use of TT to measure BP at timed intervals, etc.) It is absolutely ridiculous that no one at the FDA could do a survey of the literature to ascertain the information.

The FDA has lost all credibility in my opinion. Going after midodrine as a first line after the GAO got on them for lack of paperwork is glaring in the total lack of regard for the American people.

I am only finding tachycardia as a side effect of that med, Tilly.

Were you possibly misinformed and they meant bradycardia (slow heart rate)?

Reen,

What is TENS? I have never heard of it? My deliveries have been ok and usually about 8 hours or so from beginning of real labor to birth. I have had one of them with no drugs - and it was great - BUT, I did not have POTS then and felt very in control with that one.

Maggie

Maggie-

Sorry I somehow missed this. A TENS unit is a transcutaneous electrical nerve stimulation device. The idea is disrupt the pain signal before it reaches the brain.

Here's a link to wiki-

http://en.wikipedia.org/wiki/TENS_unit

hope everything is going well,

noreen

we need to keep squeaking!

That was sort of my point. That was the first article the NY Times had on midodrine and they got it wrong.

Perhaps now would be the time to raise awareness about dystonia riding on the FDA issue.

http://www.nytimes.com/2010/09/04/health/policy/04fda.html?_r=4&pagewanted=print

Great news. Thanks for posting.

One question, are we all teenage drug seekers -

"Midodrine treats a condition known as postural orthostatic tachycardia syndrome, or Pots. Such patients suffer a severe drop in blood pressure when they stand because blood pools in their legs when vessels fail to constrict. Symptoms range from dizziness to fainting, and the condition is most common among teenage girls."

Thanks for posting the link.

Julie-

Thank you so so much for posting the link to Dr. Rowe's article.

It is wonderfully written and offers many suggestions- it definitely is a go to article when problems arise or as use in making our own checklist (as in the Checklist Manifesto) Our symptoms and conditions can be as complex as coordinating numerous professionals in an operating room - after all most of us have to orchestrate care among numerous doctors (where oh where is Dr. Welby and Consuela?!).

tks again,

noreen

LOL

You are one funny man. thanks for the laugh

Reen, I didn't know about this condition. May be something to look into. So, with fragile veins - you can touch me and they will break - aspirin would be okay? I don't want any more TIA's - this last one really affected my brain. I can't do math any more and I used to be a book keeper (one of my many jobs.) It's very frustrating.

I hear ya, Issie. I think they missed at least one TIA on me - magna cum laude MBA in acctng - and I can't trust myself to write a check.

Here is a link to basic info on APS also known as Hughes Syndrome or sticky blood syndrome.

Obviously I am not a doctor Issie and you should clear it with your doc but generally a baby aspirin (81 mg) is considered good when there is a stroke risk or hx. The idea is to thin the blood a little so clots do not form - clots cause strokes. The collagen disorder results in your vein breaking when external pressure is applied.

I'm home... wrapped in an ace bandage so tight I think my brain has been cut off from blood flow and they stuffed my bra with an ice pack too, which I'm thankful for as the novacaine starts wearing off. Procedure took about an hour and we had a little difficulty getting the area numb enough but overall, wasn't too bad. Now for the waiting game...

nina-

Hope you are sleeping/resting and able to recover from this without any more flare ups.

Sending more positive energy for strength as the waiting game begins. Will it be a week until you have results?

noreen

According to this New York Times article, the Petasites an extract of the butterbur plant is going to be recommended by the new American Academy of Neurology guidelines as a migraine preventative.

This Medscape article gives information on the studies and dosages. It does sound promising.

Has anyone here tried it and, if so, what were your experiences?

As far as updates once it's approved, that depends on the category into which they place you - one of three. The first one (and I don't remember the exact names) is "recovery expected" and they re-evaluate your condition after 6-12 months. The second is "Recovery possible" and I believe they re-evaluate you after 1-3 years. The third is "recovery not expected" and re-evaluation occurs after 5-7 years. I can't say why, but I was lucky enough to be placed into the latter category, so they won't bother me for a long time and I can concentrate on getting better so I can contact them instead and tell them I'm back to work, when I'm ready.

I didn't know about the different categories, Simmy. I, too, was placed in re-evaluate in the 5 to 7 year o slot. I have a feeling, though, that age plays into it - a 35 yr old with the same history and dx may still be re-evaluated in the 1 to 3 category.

Issie-

There is a condition referred to as 'sticky blood' syndrome - Antiphospholipid Syndrome. Elevated APS occurs in Lupus (SLE) as well as on its own. Generally it is the rheumy who orders this test as part of a complete panel. APS is one of those hard dx as you generally have to have a major stroke to have definitive dx. My level is just at borderline - I can tell when the level will be high because the blood almost clots while being drawn.

I have EDS and I think the tendency to bleed is why my levels are not higher. The firstline drug of choice (without major thrombotic event) is plaquenil - that helps with lupus and APS. If hematologist thinks more should be done, coumadin is rx'd.

With a history of TIA you probably should be on a baby aspirin. I also am on 4000 units of fish oil.

All supplements are listed on my medication sheet. Too many variables make it much harder to sort things out.

noreen

Rachel-

That's good news - Hope you continue to improve!

your plan to be prepared for a reoccurence sounds like a good one. I have thought an action plan in a binder would be a good tool for use when the fatigue and brain fog is impossible. I haven't gotten there yet/

I also sent an email to Public Citizen Health Research Group. Their MD thought the FDA removing the drug was a good idea. I emailed them to tell them why they are wrong. It is one more place that people might want to contact. The issue with the drug is not safety or effectiveness: it is politics of our healthcare system!!!

I can't find anything about midodrine on Public Citizen. apparently, they listened to you.!!

It so frustrating, Rachel.

The FDA keeps changing the rules. No wonder Shire lost patience with that agency!

the only thought I had as to why the link is not showing is that I did a search on the site and sent that.

Here is the direct link - http://www.americanwheelchairs.com/links.shtml

Look on the left for links to wheelchair and then look for reclining wheelchair.

hope something works out

the only thought I had as to why the link is not showing is that I did a search on the site and sent that.

Here is the direct link - http://www.americanwheelchairs.com/links.shtml

Look on the left for links to wheelchair and then look for reclining wheelchair.

hope something works out

I am so sorry.

Lawyers do have to carry malpractice insurance, you know. It still seems worthwhile to contact the bar association where he is licensed.

We're here for you.

Hope the pain is not too bad and you can sleep.

gentle hugs

noreen

I called and left my message with the FDA today registering my objections to their proposed withdrawal of midodrine from the marketplace. Here's the number I used:

1-888-463-6332, then I selected #4 Speak to a representative, #3 Human Drugs, #1 Human Drugs. Some of my friends got a real person, but I got sent to voicemail and I just left a message saying what I wanted to say. At least I feel like I "did" something on my own behalf today.

Nina

Good for you Nina.

I hope you are beginning to feel better.

{{{Rachel}}}

I was just going to offer support as your symptoms just like what I was going through last winter. It is impossible to describe the psychic pain when you can't use your brain - e.g. using a computer is tough even though you've used one for decades.

I was also dx'd with low vitamin D (again) and took the high doses at around this time. Christy might be onto something there. I can't say that I noticed immediate improvement but there definitely could have been a correlation - I need a wife or mom to help me make those connections - lol.

Have you been dx'd with fibro? .Your description sounds like a bad fibro flare. Possibly the change in season approaching has something to do with it. for fibro, heating pads are wonderful - heated mattress pads are great. Just thinking out loud here.

I hope you find an answer. In the meantime, positive energy and prayers headed your way.

noreen

I did a quick search on Amazon for reclining wheelchair when I couldn't find a site that showed a chair in action. http://www.amazon.com/s/ref=nb_sb_ss_c_1_15?url=search-alias%3Dhpc&field-keywords=reclining+wheelchair&sprefix=reclining+wheel

What is interesting is that there are apparently replacable back rests for wheelchairs that allow you to recline - http://www.amazon.com/Reclining-Wheelchair-Backrest-16-19/dp/B000LX1J2O/ref=sr_1_7?ie=UTF8&s=hpc&qid=1283196760&sr=1-7

I never knew that and have found that a problem with my wheelchair.

Here is a picture of a reclining electric wheelchair. http://wwingw.americanwheelchairs.com/specusedpermob.html

I am not recommending any brand here just trying to show options. If you do your research so know the brands and fit you need, keep an eye on Craigslist - you might get lucky.

If money is non-existent there is a site that matches donated items to those in need - http://www.lifenetswheelchairproject.org/pls/htmldb/f?p=224:1:1488785465166878::NO:::

I was initially prescribed BB years ago. As a side benefit to helping manage syncope, they were to help with migraine. I could not tolerate them due to ungodly fatigue.

Check out this site Family Practice Notebook that Erik provided last week. It might help you understand your doc's thinking.

You won't know whether you might benefit unless you try it.