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Found 9 results

  1. The new edition of DINET'S quarterly published newsletter, Dysautonomia News, is now available. Articles like "beat the heat", "meet the member", "welcome new friends, saying goodbye to old friends", "challenges of working with Dysautonomia", "So, what do you do?", "drowning in the wake", "diagnosed at 59", and a message from our new president, Ellen Driscoll. When your inished reading, please remember to sign up for DINET email alerts. Thank you! http://myemail.constantcontact.com/Great-reading-and-important-info-for-you.html?soid=1127052693011&aid=AMqhmS4k2Xo
  2. Hello DINET Members, October is Dysautonomia Awareness Month! As a way to help spread awareness, I have created a few images for anyone who is interested. They can be used as facebook profile pictures, posted on facebook timelines, or posted on blogs. If you are interested in using one of these images, you can find them here on DINET's facebook page: https://www.facebook.com/media/set/?set=a.726769044005025.1073741825.226087287406539&type=1 Happy awareness month! Rachel
  3. This is an interesting article published by Mayo Clinic this month. They have created a new scoring system to assess autonomic dysfunction. You can find the article here: COMPASS 31: A Refined and Abbreviated Composite Autonomic Symptom Score. I am linking to the abstract, but you can click on the tabs to view the full text or the PDF version.
  4. AHHHHHH!!!!! Im so excited!!! Tune into the Lou M. Dennehy Chat Show Monday 28th November on Wired 99.9FM to hear Lette Moloney speak to Lou about Irish Dysautonomia Awareness. The show airs live between 12.00pm - 12.30pm (Irish Time) It can be streamed via http://www.wiredfm.ie/?p=847 and will be available on Soundcloud after the show, ill add the link here, I hope to do you all proud!! xxx :)
  5. My MIL recently passed away & I've had the opportunity to spend some quality time with my husband's family members. I had always heard that one of my husband's first cousin's had a daughter, who is consistently described as "sickly." Well, she has almost identical symptoms and a diagnosis as my son. (They are 2nd cousins.) This sweet young lady has EDS, NMH, GI motility issues, and possibly MCAD. What are the chances??? I had always suspected that my husband had some of our stuff. He has VERY loose joints and has had several subluxatuions/dislocations. He does faint at the site of blood or even when anyone uses medical jargon that he considers gory - this is a common symptom of NMH. He was very fatigued as a teen and young adult. Between faints or dislocations (VERY few and far between) he is perfectly fine, extraordinarily healthy whereas day-to-day my son and I struggle. Keep in mind that MANY of my family members are also affected. So, poor Mack (my son) definitely gets it from both sides, which may explain the severity of his symptoms. I did NOT marry a family member What's the deal- are we attracted at a cellular level to people like ourselves? Bizarre.
  6. This is a very good 2004 article from The CFIDS Chronicle written by Dr. Alan Pocinki discussing how Joint Hypermobility relates to Chronic Fatigue Syndrome (or CFIDS), Dysautonomia, Migraines, Irritable Bowel Syndrome, Interstitial Cystitis, Vulvodynia, etc. I searched the forum, but I didn't see this article previously posted. http://www.cfids.org...mer-feature.pdf
  7. Hi Everyone, I've been researching and researching non-stop and I've read through everyone's issues, every Dysautonomia website and it's all lead me to this post. I have a theory I'm working on and discussing with some Dysautonomia doctors. My theory only relates to our symptoms in a secondary nature because there are many primary causes and bundled all together it's causing different type of Dysautonomia. My theory unfortunately does not lead to a cure or even a cause but I believe it can help many of use with better treatment. My Theory: Our Dysautonomia symptoms are the result of imbalances in our blood pressure either systemically (through our whole circulatory system http://en.wikipedia.org/wiki/Systemic_disease), localized blood pressure imbalances (isolated to one organ at a time http://en.wikipedia.org/wiki/Localized_disease) and in some cases the imbalance of blood pressure disseminates to other organs (starts in one but spreads to others http://en.wikipedia.org/wiki/Disseminated_disease). Explanation: Our Autonomic Nervous systems (ANS) ( Para and Sympathetic) control our "flight or fight (FoF)" response but they also control our blood pressure using arterial sympathetic tonus which is separate from our FoF response. Our two ANS systems basically play a ping pong match to keep everything stable. Depending on what organ of the body either one (Symp or Para) constrict or dilate. I pasted examples below from Wikipedia. You will see Mast Cells, Blood Vessels, Digestive tract, Endo and Urinary, etc... Basically all Dysautonomia patient symptom areas. Okay so that's the basics, here is the details. I believe that at the heart of our Dysautonomia symptoms are our Arteries. Depending what primary disease, illness, complication, whatever... they are effecting the pressure in our arteries. This pressure is then causing our symptoms. And depend what primary issue you have it can affect our pressure systemically, locally or by diffusion. I believe there are two keys to lowering our symptoms. 1. We find the primary disease and we treat it. Unfortunately it seems that most of our primary disease have very poor treatment options and just are rarely curable and sometimes hardly manageable. 2. Is we locate our blood pressure issue, especially if it is localized and we get doctors to treat specific local blood pressure issues. Here are some of the local blood pressure issues I've found thus far. A) Pulmonary Pressure- Breathing issues, faintness http://en.wikipedia.org/wiki/Pulmonary_hypertension Intercranial Pressure- Brain issues- may cause dizziness, nausua, headaches http://en.wikipedia.org/wiki/Intracranial_pressure C) Renovascular hypertensions- Kidney issues- http://en.wikipedia.org/wiki/Renovascular_hypertension These are just a few of the more prevalent localized BP issues but there are others. Treatment is not great for BP issues because most medicines operate on a systemic level and go into our entire blood stream. And if a patient is has Pulmonary Hypertension but has systemic Hypotension then anti hypertension meds will help the breathing issues but exacerbate the systemic Hypotension. The hope is that they find meds that are selective to certain organs. They do have such meds for certain treatments and they are called "selective." Also note worthy is that hypertension is related to Mitochondrial issues, Nitric Oxide issues, endothelium issues and a few more vascular issues. And there are new CT Scans (which I posted) that will help diagnose they BP issues in the future... http://en.wikipedia.org/wiki/Autonomic_nervous_system Blood vessels Target Sympathetic (adrenergic) Parasympathetic (muscarinic) vascular smooth muscle in general α1:[5] contracts; β2:[5] relaxes M3: relaxes [4] renal artery α1[6]: constricts --- larger coronary arteries α1 and α2[7]: constricts [4] --- smaller coronary arteries β2:dilates [8] --- arteries to viscera α: constricts --- arteries to skin α: constricts --- arteries to brain α1[9]: constricts [4] --- arteries to erectile tissue α1[10]: constricts M3: dilates arteries to salivary glands α: constricts M3: dilates hepatic artery β2: dilates --- arteries to skeletal muscle β2: dilates --- Veins α1 and α2 [11] : constricts β2: dilates --- [edit]Other Target Sympathetic (adrenergic) Parasympathetic (muscarinic) platelets α2: aggregates --- mast cells - histamine β2: inhibits --- [edit]Respiratory system Target Sympathetic (adrenergic) Parasympathetic (muscarinic) smooth muscles of bronchioles β2:[5] relaxes (major contribution) α1: contracts (minor contribution) M3:[5] contracts The bronchioles have no sympathetic innervation, but are instead affected by circulating adrenaline [4] [edit]Nervous system Target Sympathetic (adrenergic) Parasympathetic (muscarinic) Pupil dilator muscle α1: Contracts (causes mydriasis) - Iris sphincter muscle - M3: contracts (causes miosis) Ciliary muscle β2: relaxes (causes long-range focus) M3: contracts (causes short-range focus) [edit]Digestive system Target Sympathetic (adrenergic) Parasympathetic (muscarinic) salivary glands: secretions β: stimulates viscous, amylase secretions α1: stimulates potassium secretions M3: stimulates watery secretions lacrimal glands (tears) β: stimulates protein secretion [12] --- juxtaglomerular apparatus of kidney β1:[5] renin secretion --- parietal cells --- M1: Gastric acid secretion liver α1, β2: glycogenolysis, gluconeogenesis --- adipose cells β1,[5] β3: stimulates lipolysis --- GI tract (smooth muscle) motility α1, α2,[13] β2: decreases M3, (M1) [4]: increases sphincters of GI tract α1,[5] α2,[4] β2: contracts M3:[5] relaxes glands of GI tract no effect [4] M3: secretes [edit]Endocrine system Target Sympathetic (adrenergic) Parasympathetic (muscarinic) pancreas (islets) α2: decreases insulin secretion from beta cells, increases glucagon secretion from alpha cells M3[14][15]: increases secretion of both insulin and glucagon.[14][15] adrenal medulla N (nicotinic ACh receptor): secretes epinephrine and norepinephrine --- [edit]Urinary system Target Sympathetic (adrenergic) Parasympathetic (muscarinic) Detrusor urinae muscle‎ of bladder wall β2:[5] relaxes M3:[5] contracts internal urethral sphincter α1:[5] contracts M3:[5] relaxes [edit]Reproductive system Target Sympathetic (adrenergic) Parasympathetic (muscarinic) uterus α1: contracts (pregnant[4]) β2: relaxes (non-pregnant[4]) --- genitalia α1: contracts (ejaculation) M3: erection [edit]Integumentary system Target Sympathetic (muscarinic and adrenergic) Parasympathetic sweat gland secretions M:[5] stimulates (major contribution); α1: stimulates (minor contribution) --- arrector pili α1: stimulates --- [edit]References
  8. Well I finally have a laptop again so can read & participate in this forum, have been out of the loop for a long time. Was in hospital for 9 months of 2011 dealing with pregnancy setting off my POTS in the extreme. Then I developed multiple DVTs/blood clots from a PICC line in my arm, a dozen pulmonary embolisms, and a clot in my heart. Sooooo....they had me basically on bed rest for 9 months. Only walking I did was a step or two to get to the bedside commode. My POTS was so bad that I was passing out constantly during the 2nd trimester, and my heart rate would go from 75 to 160 upon standing, and I had vasovagal events for the first time (very scary!). Anyways, I made it through induction and birth somehow (it was horrible and terrifying) and the baby is gorgeous and healthy (thank God!), but I am completely deconditioned from these idiot doctors making me stay in bed after I told them I needed to keep moving as much as possible. PT wouldn't even work with me due to the liability of a pregnant lady on blood thinners falling. I have been doing home PT in small amounts for the last 10 weeks since having the baby. It took me 3 weeks just to recover from birth, but I'm able to walk a bit and get around in a reclining wheelchair most of the time. I take care of the baby (my 3 year old goes to daycare/preschool) while my husband is at work and am now alone during the day. Its rough. If I accidentally overdo activity, I pay for it big time and can't move/crash. I'm getting very lonely and impatient because my POTS was not too bad before this situation. I can't get out of our building due to stairs (last time we tried my BP was 68/58 and I was barely conscious), so I'm stuck at home until I can conquer the stairs. If anyone has suggestions for reconditioning I'd appreciate it. Its just nice to be back on here reading and not feeling quite so alone with this terrible disease. Claire
  9. Hello, all. I am a newbie and have had near syncope/syncope with BP bottomming out and tachycardia (which no longer happens when the BP plunges). I wanted to share that this was the most debilitating spring and summer and early fall in my whole life. I could not pull more than one or two weeds in flower bed when I'd have to run into house to AC and lie down. I could not walk into kitchen without things going black. If I would shower (and not hot water) I would either have to lay on bed in wet towel or finish up sitting on floor. I could wash clothes but by time I got clothes out of dryer and to bedroom, I would have to lie on bed to sort and fold. When sitting I would have to keep the legs elevated because the feet were turning purple and toes were getting huge water blisters on top (new to me) that I assumed might be from fluid retention. I had/have been so nauseous that the thought of eating is nauseating (already had been on 2 stomach meds). Had been losing weight. Arms and legs so weak and shakey. I could no longer go to the grocery and bend over to look at things on the bottom shelves. Sometimes if I had to stand in line for any length of time--here would come the profuse buckets of water pouring from my head and nose, staggering gait, muttled thinking, slurred and slowed speach, holding myself up by the counter while checking out--first grabbing a fluid from the dispensers at the ends of the checkout lane--guzzling before even checking out while trying to pan where I might be able to use cart as a walker to the closest bench or place I could sit to lay head between legs. I joked that if neighbors didn't know me but would see me go out into yard, they would think I was drunk. Cardiologist and PCP (internal medicine) had suspected POTS and referred me to cardiac specialist in dysautonomia in March but wait list was year long. By the time of my follow-up with cardiologist in Sept., he was so alarmed at how debilitated I had become (my PCP swore I looked rheumatoid although all the full gambit of tests were essentially ok, save barely any immune response), that he called this specialist imploring to get me in sooner. Thankfully, the specialist did see me and immediately diagnosed me with orthostatic hypotension. My feet were purplish black and swollen from the 5 hour drive and 3 hour wait. I take a potent water pill as needed. He added Mestinon twice a day and as needed should I feel symptoms coming on (or if I am going to a place that triggers episodes--like church or funeral home or store) and Midodrine 3 times a day. He's already doubled the Midodrine and I am still having episodes of ups and downs but right now--not quite as low. Here's the thing. Some of the first words he spoke to me were that 'this has been the most debilitating summer for all of my patients because of all the days over 90 degrees'. I didn't know I shouldn't have even been outside--not that I could tolerate much more than sitting in swing under shade tree. But he picked up on the purple feet and my EDS explaining how collagen affects even the veins/vessels. In another attempt to make the legs stronger to help get blood return to the heart, he ordered physical therapy in the aquaciser for building endurance and conditioning. I have been doing the tredmill in the aquaciser. The legs will still often burn when I stand and I still feel like I cannot stand long, but sometimes I feel like I am able to get off the sofa to do something--not much but more than before. Today was supposed to be my last session as I'd made such good progress over the past 5 weeks, but today the therapist told me that because I was continuing to make such good progress (50 min), he was adding on 6 more sessions. At first it was very scarey--aquaciser has to be heated to 93-94 degrees because of the fibro/arthritis and heat vasodilates. He was more scared than I. He planned to bring in his son's life vest to put on me in case I 'went out' on him, but he forgot it and instead strapped a safety belt to my waist and he held it all the while. After showering and changing the second session, I started to feel the palpitations, SOB and weakness, sweating. I popped a Mestinon and was drinking a cup of water just as soon as I'd found a place to sit. The receptionist hurried back to get my therapist and I kept saying 'I'm alright. I'm alright' (the standard phrase I would reassure DH, g-son, others who would witness an episode with) but I could hear my speach was slowed. He grabbed the pulse oximeter and I was tachy (I think because the shower room was small and the space heater built into the wall was really putting out heat and I'd bent over to pick towels up off the floor and to put on my shoes and socks). From that point on, I gave him my bottle of Mestinon each time I come in so that if something were to happen and I was muddle-headed, he would have those to get to me. I was just curious if anybody else gets deconditioned to this point with this and is this going to be what I can expect every summer? Winters are hard in the sense that where I live, you wear a heavy coat (especially on these vasoconstrictors) and when you're standing with the weight of a heavy coat added, or the space is confined and really heated, I know I can expect it, but I don't really go out so much when it's cold or snowy or icey. Am I going to have to go through therapy each fall? I had been doing a stationary bike but that was making my BP go sky high. I had rode my bike (standard bike) 10 miles/day every day before having a couple of spells with that so I'd shut down the exercises til seen by the heart specialist. He tells me I can only do recumbent stationary bike. I was glad to know that it was not just me (although my heart is with all who have to go through this).
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