Michelle Sawicki

See Lori's Update titled 'There is Hope, I Promise!" By Lori Valenti October 2004 http://www.dinet.org/stories4.htm

Hi Katherine, Kathleen has been a DINET member since we started. I'm not sure of her forum name...if she has one. We email back and forth and she mentioned the surgery. Please send her your good thoughts, prayers and well-wishes at this time. Michelle

Hi everyone, Kathleen has POTS and Parkinson's Disease. Please keep her in your thoughts and prayers as she goes in for back surgery on Monday. Thank you! Michelle

Hi Nina! Well, at least it's over, eh? I had one of those trans-vaginal ultrasounds before. It wasn't plesant, but it didn't hurt. It's kind of funny now when I think back to it....there I was laying on the table, my feet up in stir-ups as the tech was getting the equipment ready. She turns toward me with that probe in her hand and my eyes must have gotten really big...I mean, that thing was about a foot long ! She must have seen the expression on my face because she quickly said, "Oh no-no, we just put a little bit in...just a really little bit." Yikes, I really was scared for a minute there... Let us know when you here the results. We're all rooting for you! Michelle

I get pain in the back of my head right above where my neck ends and my head begins (does that makes sense?) when I lean over or when I vacuum. I don't know why vacuuming bothers it so much, but I have to take breaks when I vacuum and tilt my head up and back (like looking at the ceiling) and this relieves the pain. Bending down to clean the shower, do laundry, or take groceries out of the cart always hurts the back of my head....again, holding my head up and back relieves the pain. I have chronic neck pain. Maybe one day when I pay off all of my never-ending hospital bills I'll have this checked out. (Remember, I have a 15-year-old...he seems to have a thing for messing up his face...once he burnt himself so bad the skin was just melting off...the last time he had lots of scrapes, a black eye, a cuncussion and amnesia...and those ER visits aren't cheap and aren't completely covered by our insurance). I don't know if my experiences sound like anything you've experienced or not, Gena. Have you ever asked a doctor about it? How were the MRI results? Michelle

Congratulations Paige! Michelle

Let us know how you're doing when you get a chance, Nina. I hope all went well. Michelle

Just wanted to bump this up since no one answered... anyone? Michelle

Hi Bev, I wish it were so simple to say that high norepi = problems vasoconstricting, but it's not. This is thought to be true for some people. There are other problems that can affect the veins and cause problems as well. This is from our website: The following are some abnormalities that can result in reduced venous return: Abnormal veins that stretch excessively can result in pooling blood (Stewart, 2000). Altered capillary permeability can affect capillary leakiness and cause excessive fluid collection in the lower body (Stewart, 2000). This may be contributing to orthostatic intolerance in a number of POTS patients. Blood vessels that don't seem to constrict appropriately have been noted in POTS patients. Some physicians believe this subnormal orthostatic venous constriction, resulting from impaired sympathetic innervation, is the cause of blood pooling excessively in the legs of POTS patients (Streeten, 1999). This loss in the ability to vasoconstrict leads to excessive heart rate increases and contractions (Grubb, 2000). Denervation occurs in some POTS patients. A number of patients do not sweat in various parts of their bodies. Some patients report losing their ability to sweat altogether. This lack of sweating shows that the nerve supply to the area is damaged (Low, 2000). As a result, the vessels that the nerve supplies lose their tone and become slack. Blood volume is normal but vessel capacity is excessive (Low, 2000). This causes decreased venous return of blood flow to the heart, decreased cardiac output and (probably) orthostatic reduction in cerebral blood flow (Streeten, 1999). Peripheral neuropathy may be present in these patients. This neuropathy seems to be selective, with slight responses in some regions being compensated for by overactivity in other regions (Bush, Wight, Brown & Hainsworth, 2000). Hypovolemia (low blood volume) sometimes occurs in POTS patients. Reduced plasma renin activity often accompanies the low blood volume. Reduced levels of renin release consequently result in reduced secretion of aldosterone. This would be expected to impair renal sodium conservation thereby contributing to hypovolemia (Streeten, 1999). Findings suggest that the impaired renin release may possibly result from sympathetic denervation (Jacob & Biaggioni, 1999). Physicians believe hypovolemia and inappropriately low levels of plasma renin activity may be important pathophysiological components of orthostatic intolerance (Jacob, Robertson, Mosqueda-Garcia, Ertl, Robertson & Biaggioni, 1997). Erythropoietin response impairment may be contributing to a patient's hypovolemia. Erythropoietin is a hormone made by the kidneys. It helps stimulate red blood cell production. Impairment of the normal erythropoietin response to low levels of red blood cell mass could contribute to hypovolemia. Physicians postulate that subnormal erythropoietin response may be resulting from a disorder in the normal sympathetic stimulation of erythropoietin release by the kidney (Streeten, 1999). Read more Paradoxically, POTS can occur because of hypovolemia or hypovolemia can occur because of POTS. This can happen because hypovolemia may lead to a chronic state of adrenergic activation, which may produce POTS symptoms. Chronic adrenergic activation reduces intravascular volume, which may produce hypovolemia (Stewart & Erickson, 2002). Read more Impaired venous emptying can cause excessive fluid collection in the lower body. This can lead to blood pooling in the lower limbs and consequently, orthostatic intolerance. Splanchnic pooling is occurring after meals in some POTS patients. Excessive pooling of blood in the abdomen has been shown to occur while the patient is supine and at rest (Tani, Singer, McPhee, Opfer-Gehrking, Haruma, Kajiyama & Low, 2000). The splanchnic vascular bed contains up to 30% of blood volume. Limited autonomic neuropathy causing peripheral denervation may be the cause of increased resting flow and reduced mesenteric resistance in these patients. Then there are a few out there that have the norepinephrine transporter deficiency. This is from our website re: the norepinephrine transporter deficiency: Norepinephrine transporter deficiency is thought to cause POTS in some patients. These patients have an abnormality in the clearance of norepinephrine from the synaptic cleft. The body normally recycles norepinephrine. The protein that recycles norepinephrine doesn't work well in people with the norepinephrine transporter deficiency (Grubb, 2002). Excessive amounts of norepinephrine is spilled over. These people soon become depleted of norepinephrine if the neuron is continually stimulated (Grubb, 2002). They go from having excessive amounts of norepinephrine to having no norepinephrine, at which point they crash. There are probably some (many?) other factors that have yet to be discovered that may be playing a role in increased norepinephrine levels. Re: your second question....the above mentioned info may apply here as well. There are people like me, Nina, and some others on this board who have Ehlers-Danlos syndrome (joint hypermobility syndrome). We are thought to lack firm enough collagen to hold our veins tight. Our veins stretch excessively and therefore don't constrict appropriately. I hope this helps! Michelle

Beta Blockers can block the direct effects of norepi on your heart. And many of the other medications affect the amount of norepi you release as well. For instance, a medication that helps vasoconstrict will result in your veins constricting more and therefore less norepi being pumped into your system (in an effort to constrict your veins). Hope that helps! Michelle

Norepinephrine is not the same as adrenaline (epinephrine). Here is a link regarding norepinephrine: http://en.wikipedia.org/wiki/Norepinephrine Michelle

I buy from Canada on a regular basis. I save a HUGE amount of money...hundreds of dollars a month. I've never had a problem, either. Personally, I think a lot of the hype made about buying meds from Canada is made from those who are losing money because you aren't buying meds from them here in the states. It's been wonderful for me. Here is a recent article regarding buying drugs from Canada: http://www.cbsnews.com/stories/2004/03/12/...ain605700.shtml Michelle

Hi Jan, Another member also told me they would prefer Ann Arbor, so it looks like we are going to plan for Ann Arbor on Sunday, Oct. 24th. Thanks for offering your home though, Sue....that was really nice of you. I'll drop an email to the Michigan Meet Other's members this week and see who else can make it. Looking forward to seeing all of you! Michelle

Magnesium has really helped me with this. Michelle

That's really nice of you, Sue! Well, I'll just ask the others....would meeting at 94 & 696 work for you, or would you rather meet around Ann Arbor? Does Sunday, October 24th work for you? Michelle

This came straight from Vanderbilt's site: What is Orthostatic Intolerance? When orthostatic symptoms occur in patients, but blood pressure does not fall as much as 20/10 mmHg on assumption of upright posture, the patient has orthostatic intolerance (OI). Additional criteria used for the diagnosis of OI at Vanderbilt?s Autonomic Dysfunction Center include an increase in heart rate of at least 30 beats per minute with standing, and a standing plasma norepinephrine level of at least 600 pg/ml. Because upright heart rate is usually greatly increased, the term Postural Tachycardia Syndrome (POTS) is also used. I have had high norepi levels on two occasions....once when I was really sick and they were sky high and then years later when I was feeling a lot better...they were moderately high. Norepinephrine is a natural vasoconstrictor....your body pumps it out to try to get your veins to constrict and bring more blood to the upper body. It makes sense that those of us experiencing pooling blood may have high norepi levels. We have a bit on the site about increased dopamine levels possibly contributing to orthostatic intolerance, but I haven't come across anything regarding low dopamine levels. I hope this helps! Michelle

Hi Sue! That is so nice of you to offer your house...BUT.....think about all that will be involved....the cooking (or getting take-out), the clean-up, those pesky DINET members who just won't go home (just kidding guys! ). Anyhow, really think it through....it may just be easier to meet at a restaurant where none of us feel we have to entertain and we can all just relax and enjoy. But if you REALLY want to do it at your house, I am game for that as well....though Ann Arbor may be a more central location for everyone. Jan, I wish I could agree to next week, but I want to invite the Meet Others member who aren't active on the forum as well. I don't think a week would give them enough time to make plans...some of them may only check their email once a week. How does Sunday Oct. 24th sound to you guys? We could do a lunch or dinner get together. Let me know and I'll make reservations somewhere. Jan, can you suggest some restaurants that are right off of the freeway? Hope to see you guys soon! Michelle

The things that have helped me have been wearing compression stockings and also taking midodrine (the vasoconstrictor). This is actually the only time that I notice a difference in symptoms when I take midodrine....otherwise it seems to do little for me but make me want to go to sleep. Motrin always helps my POTS symptoms no matter what day of the month, so I take that as well. Some people have gone the supression route and say it has made a great difference and that they are feeling much better. However, I also worry about long-term side effects. I guess you have to weigh the benefits against the risks and choose what is right for you at the moment. Michelle

Friday, the doctor that said this did not elablorate, so I can only assume he was speaking about the things Briarrose has listed. Michelle

Hi Beverly! We have an "Add A Physician" link on the upper right hand side of this page: http://www.dinet.org/physicians.htm Once a physician is added we send them a survey to ask if they want to be on the site and to find out what types of dysautonomia they treat, etc. so that we can include it with their listing. I'd love to have this doctor on the list...sounds like he is one of the good ones. Thanks for thinking of others when you are in the mist of so much yourself right now. Michelle

Nina, I hate to here this. Yikes! I was hoping things would start getting better. I'll be keeping you in my prayers and sending good thoughts your way. Michelle

Hi Beverly (and Nicole)! Welcome to the forum! Regarding saline...some people do go on long term regimens of saline and give themselves IV's at home on a regular basis. I've had people tell me this really helps them, and there was a study some time ago that found saline to be the most beneficial treatment of the several treatments studied at the time. However, some physicians feel the benefits of IVs do not outweigh the risk. I think this sentence from our "What Helps" page explains why we might be able to tolerate (and need) more salt than the average person: Normal subjects reduce urinary sodium excretion on assumption of upright posture, but patients with orthostatic intolerance do so ineffectively (Vanderbilt University Autonomic Dysfunction Center, 1999). (See specific page for references) Is there any way you might be able to get Nicole to a doctor who specializes in treating dysautonomia? We have a list of physicians on our website. Getting on the right medication can do wonders...however finding the right medication is often trial and error, and this is something a specialist will be able to help you with. If you have more questions, ask away! That's what we're here for. Michelle

Hi guys! You know I love you all....which is why I am asking you to please refrain from posting political views on the forum. Politics can make for heated discussions and I don't want flame wars, least of all from our good-hearted gang. There are lots of good forums specifically made for discussing political views, if you feel so inclined. Best wishes to all, Michelle

Morgan, I do hope the physical therapy helps you out a bit. It's great that you still have your sense of humor. Hang in there, and let us know how things go. Michelle

Wishing you a quick recovery! Michelle