Noreen

Hi and welcome to the group- I had only heard of the drug in relation to cancer so I went to wikipedia and found this- Since octreotide resembles somatostatin in physiological activities, it can: Inhibit secretion of many hormones, such as gastrin, cholecystokinin, glucagon, growth hormone, insulin, secretin, pancreatic polypeptide, TSH, and vasoactive intestinal peptide. Reduce secretion of fluids by the intestine and pancreas. Reduce gastrointestinal motility and inhibit contraction of the gallbladder. Inhibit the action of certain hormones from the anterior pituitary. Cause vasoconstriction in the blood vessels. Reduce portal vessel pressures in bleeding varices It has also been shown to produce analgesic effects, most probably acting as a partial agonist at the mu opioid receptor.[1][2] So while it can increase vasoconstriction, it would seem that you would exchange that for other side effects we fight against such as Gastroparesis (slowed gastro motility ) Have you seen an endocrinologist? Who is recommending this?

I got my Himalyan salt online from Swanson vitamins. I have found their quality and prices great - I have been getting stuff from them off and on for 10 years or so.

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.

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)?

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

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.

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

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.

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?

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 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

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