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Found 21 results

  1. <p>http://www.aafp.org/afp/20031215/2393.pdf</p>
  2. <p>http://www.dizziness-and-balance.com/disorders/medical/orthostatic.html</p>
  3. <p>http://stroke.ahajournals.org/cgi/pmidlookup?view=full&pmid=11022055</p>
  4. <p>http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10476310&dopt=Abstract</p>
  5. <p>http://content.nejm.org/cgi/content/abstract/329/9/611</p>
  6. <p>http://www.aafp.org/afp/20031215/2393.pdf</p>
  7. <p>http://www.dizziness-and-balance.com/disorders/medical/orthostatic.html</p>
  8. <p>http://stroke.ahajournals.org/cgi/pmidlookup?view=full&pmid=11022055</p>
  9. <p>http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10476310&dopt=Abstract</p>
  10. <p>http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8924753&dopt=Abstract</p>
  11. <p>http://content.nejm.org/cgi/content/abstract/329/9/611</p>
  12. Hi all, I see many of us have been looking at mast cells as a possible trigger for our screwed up autonomic nervous systems. I've had prominent food and medication sensitivities and random episodes of anaphylaxis years ago(requiring epi/ambulance ride, etc), but these issues have resurfaced. Once I looked up the clinical definition of anaphylaxis, I realized that all it takes is one skin reaction(like flushing, hives, itching) and a second organ system involved, ie GI (vomiting, big "D", abdominal pain) or cardiovascular involvement (like orthostatic hypotension or even hypertension), and then angioadema and swelling are listed. This is making me reevaluate my current episodes. I am nearly continually flushing, with near daily episodes of GI evacuation, so been adding antihistamines and can see a difference. I see my autonomic neuro in a few weeks. and my derm two weeks later. Here is my big question for today. Has anyone experienced forced sleep, where it feels like you have been given sedation? I still can't place this one major symtoms. Is it mast cell related or OH related, or something else? Today, I had lunch with a friend in a local mexican restaurant that uses only fresh ingredients. BTW, I've never reacted to fresh mexican food. The 2 hour lunch went well. I then came home then felt doozly, which is our family word for I HAD to go lie down. By that time I had chills, the inner core type, blurry vision, then my eyes got really heavy, where I couldn't keep them up any longer. It feels like I am getting sedation, then I am out cold for several hours. I heard the phone ring twice, but I am unable to come to. I awoke 3 1/2 hours later, somewhat refreshed and feeling fine. Sometimes I get these episodes right after I wake in the morning and have to go back to bed for several hours. I've have had these episodes for five years, and had to work later in the day to cover the time off of work. Haven't been able to work in 2 years . The only trigger I can possibly come up with today is perfume from woman in next booth, but I get these same episodes without exposure to perfume. Can anyone relate to this experience and have you figured out what triggers them? Thanks for your responses. Lyn
  13. Chelsea Drops While Trying To Prevent Falls April 10, 2012 http://seekingalpha.com/article/487471-chelsea-drops-while-trying-to-prevent-falls On March 28, 2012 Chelsea Therapeutics (CHTP) received a complete response letter (CRL) from the Food and Drug Administration (FDA) for the company's new drug application (NDA) for Northera (droxidopa) to treat people suffering from symptomatic neurogenic orthostatic hypotension (NOH). In the CRL the FDA asked Chelsea to conduct another study which can demonstrate the drug continues to work for patients over a two to three month period. Trial 306b Waiting in the Wings Investors will undoubtedly be wondering if the 306b study Chelsea is currently conducting might be sufficient to demonstrate the durability of effect the FDA wants to see. The short answer is perhaps. The longer answer is, first and foremost, Chelsea would need to negotiate with the FDA regarding the trial's endpoints. 306b does measure the mean change in the composite OHQ, the primary endpoint used in the highly successful 301 study, but as a secondary endpoint. 306b simply isn't powered to use the same endpoints 301 did. Currently, the primary endpoint in 306b is the comparison between drug and placebo on the rate of patient reported falls from baseline till the end of study. Investors should realize there is increased trial risk with 306b because it is only enrolling Parkinson's (PD) patients while 301 enrolled patients suffering not only from PD but also multiple systems atrophy (MSA) and pure autonomic failure (PAF). Treating different patient populations increases the chances of unexpected trial results. This is further complicated by the fact that in trial 302 PD patients were the most responsive while in 301 they were the least responsive. Assuming the company and the FDA agree on the suitability of study 306b, investors will then want to focus on whether the trial can successfully blunt the management theorized carryover effect resulting in higher than anticipated placebo responses. High placebo responses have been blamed for trials 302 and 303 failing to meet statistical significance. A quick overview of NOH and Northera is likely a good idea here. NOH is a sudden fall in blood pressure when standing from a sitting or lying position. Symptoms include lightheadedness, dizziness, blurred vision, falling and syncope. NOH is a disorder of the nervous system resulting from a deficient release of norepinephrine. Norepinephrine is the neurotransmitter that signals blood vessels to constrict. Normally, when we stand, norepinephrine gets pumped out of our neurons and tells the vasculature in our brain to constrict. This keeps us from becoming dizzy when we stand up. When we sit back down the norepinephrine that is still in our system and was not metabolized gets reabsorbed. When we sit, the blood pressure in our brain comes back down and everything returns to normal. Northera is a precursor or prodrug to norepinephrine. When taken it is directly metabolized and turned into norepinephrine and stored in the neurons. Study 302 and 303 both sported a withdrawal design. All patients were given Northera initially and then randomized into either a group which continued to receive the drug or a group given a placebo. The placebo group performed better than expected and Chelsea believes this is because Northera replenished norepinephrine levels to the point that the neurons stored the neurotransmitter for later use. Both trials didn't run long enough for these placebo patients to stop benefiting from having previously taken the drug. Unfortunately, 306b is designed so all patients will receive varying doses of Northera for up to two weeks initially before being randomized to continue receiving the drug or a placebo. Fortunately, the drug vs. placebo period lasts eight weeks. Hopefully, this is more than enough time for any carryover effect to cease. Durability of Effect At the Advisory Committee meeting both the panel members and FDA staff felt Study 301 on its own would have been sufficient for approval but the lack of long-term benefit from 303 called this into question. Can 306b show durability of effect over two or three months? It should be able to but only if it actually exists. The interim data from 306, now referred to as 306a, showed there was a greater difference between placebo and drug after one and two weeks than at the end of eight weeks. Both 302 and 301 studies were significantly shorter than eight weeks and both yielded very good data. Management alluded to the age of the patients and hinted at the untrustworthiness of their responses. Decide for yourself the merit of this positioning. Personally, I would like a closer look at the falls data. If the rate of falls increased week after week in the drug arm then maybe we are looking at diminishing returns. Black Box Warning In the CRL the FDA also recommended a black box warning related to supine hypertension be included in the labelling. They indicated this warning could be removed with supportive data derived from patients while they are lying completely flat. Interestingly, the standard of care (SOC) is to measure supine hypertension on a tilt table at 30 degrees. In 306b Chelsea is collecting data based on the SOC but not while patients are completely flat. Midodrine, the current, but lacking, SOC drug for NOH also has a warning of supine hypertension so Northera would lose a nice market differentiator if it ended up with the same warning. At the very least, Chelsea hopes to convince the FDA to use language that differentiates the risk between the two drugs since data to this point shows a much higher prevalence of supine hypertension using Midodrine than using Northera. A New Trial? Management hopes to talk with the FDA within sixty days about a variety of topics. Any news supporting the viability of 306b as a pivotal study will undoubtedly push the stock higher but given the challenges and risks associated with that study a new trial might be the surest way to proceed. Chelsea wants to eventually obtain a much coveted falls label claim for Northera but the FDA has already stated an additional trial beyond 306b would be required for support. A new trial enrolling the proper patients, using proper co-primary endpoints, using induction over withdrawal design, and lasting two to three months as the FDA requests sounds less risky than counting on 306b to deliver the goods. However, management may feel a quicker yet still realistic path to market is to change the current 306b trial and get it approved with the supine hypertension black box label warning. Passing Around the Hat Despite guiding cash is sufficient to last into 2013, the company is going to need to raise more funds. They ended March 2012 with over $50 million. Negotiations with the FDA and potential changes to 306b will require more time and money. A brand new trial would likely take two years to run and cost over $28 million. My guess is the company will wait until late June or early July to raise cash. News from talks with the FDA about 306b might come early June and data from the CH-4051 phase 2 trial in Rheumatoid Arthritis is due later that same month. Will management roll the dice on a higher stock price after these events? I think the bigger question is what they decide to do with 306b after input from the FDA.
  14. Hi everyone, Haven't posted in a while. Previously, my endo was considering insulinoma, but that was ruled out and abrupt sugar and insulin spikes are now considered to be related to extreme stress response to my significant orthostatic hypotension. During my last appointment with Autonomic Neurologist, he was concerned about my intense facial flushing, red blotches on my neck, and raised red bumps on top of my hands. Sent to dermatology, where they saw the same symptoms come and go over the course of my appointment. My dermatologist ruled out systemic mastocytosis with tryptase of 2.5 (normal to 11) and skin punch biopsy of blotchy skin on upper chest. Could really use some input from you all, especially curious if any of you with orthostatic hypotension +/or autonomic neuropathy have non-itching flushing or blotching? Dermatologist originally thought blotching was chronic hives and send me home to take 3 zyrtec a day and eliminate red and yellow food dye from meds/diet. I never had a problem with zyrtec before so took 1 (generic, white pill) for 5 days without issue, then added a second pill for 5 days before adding a third pill. The day following the third pill, I started the worst 3 day episode of OH that I have had in 2 years -- BP 110/70 while laying, 166/110 while sitting then 88/66 while standing. At the time, I was taking 75 ug Levoxyl, 20 mg verapamil, 75 mg ranitidine and 5 mg zolpidem. Since I had been titrating the verapamil up from 10 mg/day over the previous three weeks, I kept at the 20 mg while adding zyrtec. After the 3 day OH episode, I awoke the next day with more energy and clarity than I have felt in 5 years. I kept busy and enjoyed this reprieve until it lasted all night. Even with several attempts to sleep, I was awake for 40 hours before finally sleeping but towards the end my family said I was wired - talking really fast, bouncing off the walls. This is how I recall feeling prior to my world changing due to AN. After I finally slept, I awoke the next morning with a 14 hour migraine. Day 3, stopped both the verapamil and zyrtec until I figure out if I should restart, but now wonder if that triggered migraine. Consulted both physicians, who are at a loss and trying to figure out what to do next. Wonder if the combination an addition to zyrtec dose is involved with this reaction? Funny thing is, I often get GI symptoms with this flushing, so now I am looking at some mast cell connection, as others have suggested from my medical history. Also have dermatographism and extreme sensitivity to fragrance and history of anaphylaxis/anaphylactiod reactions treated with epi, as well as other numerous significant reactions/episodes (some triggered by meds, some by foods?). Learned skin biopsy didn't support hives, but did show dilated blood vessels. Since my blotching does not itch, is not raised and only gets hot, = not a typical histamine reaction. Dermatology wonders if flushing/blotching may be related to some type of vascular leaking due to autonomic neuropathy/orthostatic hypotension. If it's not histamine, could this leaking be caused by a different mast cell mediatior? Neither neurologist nor dermatologist are familiar with MCAD, but both are looking into it. Dermatologist felt that the concept of MCAD is plausable to describe my odd presentation, and encouraged me to continue down that path, especially after I shared a synopsis of what I learned in my research, and connection to autonomic dysfunction. Would love to hear any personal responses with flushing and blotching and reactions to high dose antihistamines/zyrtec. Been on the Mastocytosis Society website, DINET archives, and pubmed, now looking for personal experiences. Thank you for your input and thoughts on my current episodes. Lyn
  15. I cannot recall the topic I was following but a poster suggested that when I see my hemeoncologist (new visit, referred for the Delta Granule Storage Pool Deficiency found by lab testing ordered by cardiac specialst in dysautonomia), that I ask about a tryptase level. Commonalities were IBS-D, chronic sinusitis, multiple drug, food and environmental allergies, early onset arthritis, fibromyalgia, CFS, tendonitis, pleuritis, tenosynovitis, pericapsulitis, osteomyelitis, osteopenia (early onset), bronchitis, bursitis, pituitary adenoma, ovarian cysts (and cysts on kidneys, lungs, heart), pericardial effusion, diverticulitis, colon polyps, and a host of other ailments. I was feeling scared and overwhelmed and intimidated going to see a hemeoncologist at big Cancer Center. This doctor could not have been nicer. He listened to me and I took copies of my labs showing low T cells, T-helper cells, IgG1, IgG2, other IgG subclasses and low gamma globulins with fluctuating WBCs mostly 'normal'. He asked about parents having chronic sinusitis (why I did not know--both had cancer). I summoned the nerve to ask about this Mast Cell Activation Disorder (all the while waiting to be dismissed, but to my amazement, I was not). He told me there was a very good chance that it might be. He said that it could be that I just have 'lazy phagocytes'. The satellite clinic where I saw him was not able to perform what tests he thought I needed. So now he has referred me to 2 of his associates in Columbus--referring to one for 'multicomplex immunodeficiencies' and referring to the second one for 'immunodeficiencies and the Delta Granule Storage Pool Deficiency'. So I am still scared and yet feel comfortable enough to raise the question thanks to you posters who have provided me with info. Had I only seen hematologist for the bleeding (as the letter instructed), the immune deficiencies I've had may have remained missed as a potential piece to the puzzle. My appointment was the day before Thanksgiving--the same day the phone company accidentally took out my internet when they started up somebody else's new internet services in the neighborhood, crossing the circuits and disabling me until today. My hemeoncologist wanted me in asap and was confident he could do it since he was insider making referral, yet the first appointment isn't until close to Christmas and the other hemeoncologist appt. is late Jan. Without your discussions and input and references, I would never have learned about the link to such things. Thank you all.
  16. Again, I am rather new to all this, but find laundry day a nightmare. So I have to set changing the sheets on a 'good day' which is still quite challenging. I am petite and short. We have a queen sized bed with mattress topper. I buy larger sheets so tugging and pulling isn't as much as an issue but I repeatedly have to go from one corner/side of the bed to the other multiple times, and repeat with each layer of the bedding. By this time I've been on my feet quite a while, bending at the waist while trying to life what I can of the heavy mattress to tuck sheets in with hypotonic arms and legs. I keep water in there with me and have to stop, rest and drink (and it probably looks to DH that the only thing I did today was change a bed). He does try to help when he is here by carrying the laundry from the hamper to the utility room (one less bending down and carrying a load). He helps get dinner as I'm done by that time of day and he does almost all the shopping (I can go short term but never know if it will be successful or if I have to sit right down on the floor if a chair or bench is not close--and I have to go with him). I can wash a few dishes although it may take me 2-3 stops to hurry to sit, rest before tackling again. I do have a stool I could carry over to sit on for that, but not for changing the sheets. I reward my g-son if I can get him to help with dusting things down low when he comes over and while he'd be eager to help, (he makes his bed if stays all night which I have to touch up) he's not big/strong enough to help me change the sheets. I even have the bed on risers. How do you all do this?
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