Noreen

susan-

I think you have explained yourself well in this post.

Keep a copy of it as it would make a great letter. If you write instead of phone you can control the amount of anxiety you are able to handle at any one time.

It seems to me that you would function better in the world if you had a reclining wheelchair. That would be a concrete request that the disabled group might be able to help with. With the other situations you could explain that you are trying to get a reclining wheelchair for your neurological condition causing unstable blood pressure (substitute endocrine or whatever for your particular situation) but that in the meantime you may have to lay down or recline periodically in order to stabilize your blood pressure and heart rate before your brain is deprived of oxygen and more symptoms occur. Bring a mat, get a cane or crutch to help you get up and down - that way all you are asking for is a bit of floor space in a pinch.

I know wheelchairs and canes seem like they are used for orthopedic issues but really you need to think of them as mobility aids = these articles can help you get out and move and interact with the public.

I hope something here helps.

Best of luck,

noreen

I think droxidopa will be like all of the meds--it will likely work for subgroups but not for all of us because the etiology (how the low bp or bp dysregulation happened) differs among us. Just one skim through the "mechanisms" section of the main dinet website and you can see the variety of paths leading to autonomic dysfunction.

Nina

I am sure you are right as to it not working for everyone. The mechanism by which it works seem promising, though.

"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. "

Heard this on NPR today:

http://www.npr.org/templates/story/story.php?storyId=129475625

Wow thanks for posting this. I think most of us can relate to this excerpt:

"When the body is rendered useless, the mind still runs like a bloodhound along well-worn trails of neurons, tracking the echoing questions: the confused family of whys, whats, and whens and their impossibly distant kin how. The search is exhaustive; the answers, elusive. Sometimes my mind went blank and listless; at other times it was flooded with storms of thought, unspeakable sadness, and intolerable loss."

I take fiorinal.It helps.

Erik-

That Family Practice Notebook link is great. Especially helpful in outlining steps family med docs could do to help us. Should help those unable to find decent specialists.

tks again,

noreen

I wish I could buy some thick skin on the web somewhere.LOL I can't help being affected by doctors like this. Sometimes they make me so insecure I start doubt things that I know are right.

I'm with you there. It seems like you have to gather courage before going to a new doc. I can cry when frustrated and you know if that happens I am forever labelled as a loony.

You deserve kudos for being assertive enough with that doc. It ends up being such a fine line as you want the doc to like you and do his job yet women get put down if they are assertive. I am never quick enough when challenged.

Wow, Dianne, that sounds very interesting. You will definitely have to let us know.

I know you mentioned neurophysiologist before but I am unsure how to locate one in the states. Anyone have ideas?

... and 1 hour in the pool, floating around (light swimming for 2-3 min). ...

Wish I could drink (kidding - sort of).

Sarah

Hey visualize having one of those umbrella drinks while floating in the pool. Have one for me while you're there - I am supposed to avoid chlorine.

The really bad thing is not being able to follow a television program - I can lose track of the plot easily if I can't rewind.

But might there be some kind of odd metabolic issue -- that can also cause weird labile HTN, muscle join pains, knee buckling, and a some other things?

Hey if you find out what it is, please let me know. the docs were convinced i had SFN but the skin biopsy came back negative. Glucose tolerance fine. Heavy metals fine. EMGs fine (I keep getting conflicting results).

Now I get the.. it must be your fibromyalgis line. So apparently this neuro only wants to treat my cervical dystonia with botox but won't do migraines or the autonomic issues. He sent me back to the rheumy for that - she said autonomic issues are the neurologist's. Hey at least you are seeing good docs who admit they don't know and aren't bouncing you hither and yon.

Sorry I couldn't help but I hope knowing you aren't alone is a comfort.

You just freeze witch hazel in a plastic bag. Because the standard drugstore witch hazel has alcohol in it it ends up being gel/slushy like. It feels super cold going on but if massaged right can help the muscles.

I am a strong Arnica fan so if you can pick up any Arnica gel/ointment (Boerke and Taefel is one brand) or Arnica oil at the health food store, it might help and definitely won't hurt.

If there are knots occuring also, another cheap trick is to buy a carriage bolt at the hardware store (large screw like thing with rounded top). You can use it as pressure point therapy and it helps.

wishing you the best-

noreen

I would echo thankful's reply. Her estimates are pretty right on for where I am at. If I go to the doctor or an appt, I can be totally wiped out that day and the next.

I'd love to be at a point where I could read a book. Not being able to read is one of the cruelest parts of this. I can't close my eyes as it increases the vertigo.

Trying to get anyone to understand those limitations is tough.

noreen

Your D.O. makes a good point. I would be sorely tempted to do the same thing (stopping med). I have no knowledge of the drug, however, so I'll leave that to someone who actually knows.

I do, however, have intimate knowledge about neck pain since I have cervical dystonia. Neck pain is horrible - probably why the term pain in the neck has become part of our venacular. Do you have any muscle relaxants to help you out for the weekend?

I know you said you do heat. I'm sure you know about the 'tube sock filled with rice in the microwave' trick. Have you tried ice? One thing I haven't done in a while is make a gel freeze out of witch hazel - very cold when massaged on but witch hazel has anti-inflammatory properties that can help with the spasms. Could be a crap shoot whether it would work and I'd probably try regular ice packs first to make sure I wasn't super sensitive to cold.

Best of luck. You have my sympathy.

noreen

"The orthostatic hypotension drug, Northera / Droxidopa, that Chelsea Theraputics is trying to get approved, is for neurogenic orthostatic issues. Would that work for non neurogenic orthostatic issues as well? "

It actually sounds promising.

They are running clinical trials with Droxidopa on chronic fatigue, fibromyalgia, dialysis patients, and more. http://clinicaltrials.gov/ct2/results?cond=%22Hypotension,+Orthostatic%22

It has been in use in Japan for over 10 years. The company makes 5 million dollars on it in Japan for neuro othostatic dx. I have been unable to find out how many patients in Japan are on it so really wonder about the cost.

The issue, assuming it is approved next month, is what dx will it be approved for (the fibro, CFS trials have not completed all phases yet). If it is approved for othostatic intolerance, will those of us with dx of NCS and POTS be unable to get it?

Would our doctors prescribe it? Would our insurance companies cover it?

Many of us have very complicated medical histories which would disqualify us from clinical trials. Until the drug is in the real world with real numbers of people taking it, it will be impossible to know how it will interact with other drugs.

Nina-

((Hugs)) and a blanket of healing energy enveloping you in love.

You are definitely in my thoughts and prayers, kiddo.

noreen

Health Science Administrator in the Office of Orphan Products Development at the

Food and Drug Administration said that The FDA Office of Special Health Issues has indicated that all comments/complaints/concerns regarding the proposed withdrawal of midodrine from the market should go to one number or website: 1-888-INFO-FDA (888-463-6332) or DRUGINFO@FDA.HHS.GOV. They are keeping track of all phone calls and e-mails.

The decision to withdraw the approval of the applications will be made by the Division of Cardio-Renal Drug Products following receipt of the comments to the Notice for Opportunity for a Hearing. So it's not for certain that a withdrawal will occur but knowing the level of impact will be important to document that decision.

The Doctors at the FDA that are in charge of removing Proamatine from the market are Doctors Woodcock and Stockbridge. If you want to send them letters:

Dr. Janet Woodcock

Director FDA/CDER

10903 New Hampshire Ave

Silver Spring MD 20993.

Dr. Norman Stockbridge

Director Division of Cardiovascular and Renal Drugs

10903 New Hampshire Ave

Silver Spring MD 20993

Even if you have sent a letter to the FDA, you might want to print a new one addressed to these individuals.

Hi Bella-

Glad to hear you are alive but sorry there can be no kicking what with dealing with your knee and achilles tendon. I tore my achilles tendon when I was a teenager - Ouch! - there is a reason why the phrase has passed into use as a source of pain and incapitation.

I'll say a decade of the rosary for you and your mom tomorrow. Make sure you bring ice packs. When we are in such pain, heat can be even harder to take.

In the upper right corner of the screen, you will see your name with an inverted triangle next to it. If you have messages, there is a number; if not, you will see a zero. You click next to the number and can access your messages. If you press the ctrl key and the plus sign at the same time, the entire screen will be enlarged to make it easier on your eyes.

take care sweet one,

noreen

I just wanted to share that my Social Security disability came through today.

I wouldn't have had the strength (such as it is) without this wonderful forum for support.

noreen

Good ideas Issy!

There is one thing I used to do when I had to fly for work that helped. I used sound isolating headphones. For me noise can be a big trigger and minimizing the sounds of the plane and people helped.

so put some relaxing music or something on an MP3 and know we are pulling for you.

Would welcome feed back on this thought process.

My problem was with the last sentence - I am not sure I even have a thought to process - brain fog ya know.

many of us have switched to Himalyan salt. I can't give you a quantitative answer but I think it helps.

noreen

You are wonderful, Michelle. I totally understand these things take a bit.

Sending positive energy and prayers your way for an uneventful flight and a wonderful time.

Wish there was something else I could offer but i cannot bring myself to fly.

FYI - Page not found

edit-

It's working. thanks!

Before I saw this post, I posted in the other midodrine topic the contact at the FDA that all on the drug should write to.

Thanks for posting this. Of course, Chelsea Therapeutics, the company making the possible new drug has seen an increase of 42% in their stock price.

Apparently the FDA has assigned someone to receive letters. Now whether this helps the generics stay on the market or allows those who write in to be on the case-by=case' list they alluded to in their press release, I couldn't say.

this is from the Facebook campaign to keep midodrine on the market_(the she is someone higher up at the FDA)-

"We need to write to the Director of the Division of Cardiovascular and Renal Drugs and send it to the FDA center of drug research and evaluation. Send it directly hand signed with your address a to: Dr. Norman Stockbridge, US Food and Drug Administration, 10903 New Hampshire Ave., Silver Springs, MD 20993.

She said to write a short story, tell how you felt before taking pro/mid. and then tell how it has heped you.and how it will effect you when it is taken off the market. Like I told her we are sick and doing a diffcult petition will be hard for most of us to do. She agreed and said, for us to all send in our complaints this way and assured me that this would be the most effective thing for us to do.... yes I am so glad I got her on the phone this time..."

I wrote my letter and am resting before finding an envelope and mailing it. I think I will include this information when contacting congress rep and senators.

Is the maintenance court ordered? Is there a way to garnish his income?

If you still can't get help from your lawyer, contact the state bar association where he is licensed essentially with a copy of your post plus relevant facts.

{{{hugs}}}

noreen