Michelle Sawicki

Morgan, I hope things go okay with your cat. I have three dogs and they truly are part of my family. I hate when one of them is sick, and I worry about them just like I do with my son. I wish you the best, Michelle

Melissa, you gave me such a laugh with your garlic bread comment! I absolutely LOVE garlic, but my stomach does not. It hurts so bad after I eat garlic that it makes me want to cry. So no garlic here, but if you know of a recipe for garlic-free garlic bread, I am all ears. Poohbear, I love green beans and bacon, so I think I will like that dish. I usually cook bacon in a frying pan, and then I take it out and put green beans in the pan (in with a little of the bacon grease). I also add a little olive oil. I fry the green beans up a bit and then throw in bacon pieces and almonds and put a lid on the pan until the green beans start to get tender, but I still stir them every once in a while so they don't burn. They taste really good. The chicken roll ups sound great too. I am going to write down all these ingredients before I go shopping this weekend, and now I'll have lots of yummy new things to try. Thanks! Michelle

Hi Jan, I think a lot of our members assume they have the hyperadrenergic form of POTS when perhaps they do not. The paper by Grubb states the following in regard to the hyperadrenergic form of POTS: "The hallmark of this form of POTS is that in addition to orthostatic tachycardia they will often display orthostatic hypertension, as well as an exaggerated response to isoproterenol infusions." Do you have hypertention? I think Dr. Grubb is trying to make for clearer typing of POTS, but there is obviously a lot of overlap in symptoms. Please do ask him what type he thinks you have when you see him. Take care, Michelle

That's terrific, Sue! My sister's platelets have been going up too. She hasn't reached 100,000 yet, but each week she's been a little higher. Michelle

I've never tried Ponzu sauce, but I do shop at Whole Foods so I will look for it next time I go. Thanks for sharing! Michelle

That's wonderful! I'm looking forward to your notes. Michelle

You are a gifted writer. Thank you for sharing this. Michelle

Those recipes sound good and don't look too hard to make. I will try them both! Thanks! Michelle

Glad you guys enjoyed the article. It's a good one. I'm not sure why some of you are getting "mini print." The article printed okay for me. Maybe you could copy and paste it into Word (or whatever word processing program you have) and change the font size? Jan, I would take the paper into Grubb and run your thoughts by him. I *think* if you have JHS then you'd be classified as secondary. Just because you have elevated norepi levels does not mean you have the hyperadrenergic type of POTS. The hyperadrenergic type is thought to occur due to dysfunction of the re uptake transporter protein that clears norepinephrine from the intrasynaptic cleft, and it is one of the lesser common types of POTS. It is my understanding that what's going on in people who are classified as hyperadrenergic is currently thought to be a very different situation than what is going on with the JHS type. Both may have excessive norepi levels, but it is what is causing the excessive levels that differentiates the two. Please do report back and let us know what Dr. Grubb has to say about all this, though. Michelle

Hi guys, There is a new paper on POTS published by Dr. Grubb that is really good. It explains the different varieties of POTS and the best treatments for each variety. Best of all, you can access it for free if you just sign up for a medscape account and do a search for postural tachycardia syndrome. From Journal of Cardiovascular Electrophysiology The Postural Tachycardia Syndrome A Concise Guide to Diagnosis and Management Posted 02/07/2006 Blair P. Grubb, M.D.; Yousuf Kanjwal, M.D.; Daniel J. Kosinski, M.D. Take care, Michelle

Sorry Julie, I watched it but did not tape it. I had a bit of a different take on it than Nina. I thought the girl did have POTS/EDS, but then her POTS symptoms went away after surgery for Chiari and Retroflex Odontoid...but now that I think about it, they never really did explain that. They did not explain POTS thoroughly either, but they did say the girl had pooling blood in her legs that was causing her blood pressure to drop and her heart rate to soar, so that was something. The treatments they gave her for POTS were not conventional, but I was still thrilled to see POTS mentioned. The main focus of the show was Chiari though, so if you are expecting a show on POTS alone you will be disappointed with this one. Michelle

I'll take anything without garlic in it. Garlic is my enemy. I made Beef Wellington last night and it actually tasted good, so that inspired me to try some different recipes. Usually my husband does the cooking because my stuff never tastes as good as his. I like the arrangement, so I don't want to learn to cook too good, but I do want to try to cook something decent every once in a while. Thanks! Michelle

Hi guys, Anyone out there care to share their favorite recipes? I've actually been a bit interested in cooking lately, which is a miracle in and of itself. Would love to hear some good recipes... Michelle

I had the opposite problem for years...I had pinpoint pupils. It was very hard to adjust when stepping into the dark. Now, when I'm having a bad day my pupils still get tiny. Katherine, interesting what you said about women dilating their pupils on purpose. Dilated pupils is a sign that you are sexually attracted to someone. Desmond Morris writes a lot of interesting stuff on the subject. So girls, if someone ever accuses you of sending mixed messages, it looks like you have an excuse. hehe!

When I was at my worst I remember turning on the water and feeling it with my fingers and not being able to tell if it was hot or cold. That was really, really odd. Michelle

There is a paper that was just recently published by Dr. Grubb that explains the different types of POTS and their treatments. From Journal of Cardiovascular Electrophysiology The Postural Tachycardia Syndrome A Concise Guide to Diagnosis and Management Posted 02/07/2006 Blair P. Grubb, M.D.; Yousuf Kanjwal, M.D.; Daniel J. Kosinski, M.D. This is definitely one of the best papers I've ever read on POTS. If you create a medscape account you can access it for free. It has this to say about the hyperadrenergic variety: The second (and less common) form of primary POTS is referred to as the "hyperadrenergic" form. These patients tend to report a gradual and progressive onset of symptoms as opposed to an abrupt onset. Hyperadrenergic POTS patients report significant tremor, anxiety, and cold sweaty extremities when upright. Many will report a significant increase in urinary output after being upright for even a short period of time, and over half suffer from true migraine headaches. The hallmark of this form of POTS is that in addition to orthostatic tachycardia they will often display orthostatic hypertension, as well as exaggerated response to isoproterenol infusions. As opposed to the PD POTS patients, the hyperadrenergic patients have significantly elevated serum catecholamine levels with serum norepinephrine levels >600 ng/mL. There is often a family history of this disorder. Currently, hyperadrenergic POTS is felt to be a genetic disorder, in which a single point mutation produces a dysfunction of the re uptake transporter protein that clears norepinephrine from the intrasynaptic cleft. This in turn leads to excessive degree of norepinephrine serum spillover in response to a variety of sympathetic stimuli thereby producing a "hyperadrenergic" state that appears similar to a pheochromocytoma. The hyperadrenergic form of POTS is best treated by agents that block the release of norepinephrine or block its effects. Clonidine is often useful in these patients, starting at 0.1 mg a day and titrating upward. The patch form of the agent is particularly useful as it provides a steady level of the drug for up to a week at a time. Labetalol is often effective, due to its alpha and beta blocking effects. Dosages of 100?400 mg orally twice a day may be employed. Methyldopa is also helpful in select patients. Both the SSRIs and the norepinephrine reuptake inhibitors have been helpful in controlling patients' symptoms.

If you have Ehers Danlos Syndrome you are more likely to be born premature. Michelle

Hi Sue, My sister has ITP too, as well as POTS and EDS. I know it can be scary. I'll keep your niece in my prayers. Michelle

Hi Lois, I read your earlier post. Thanks for the info. So was the show Diagnosis Unknown or Mystery Diagnosis? Did you find it worth watching? Michelle

Poohbear, my sis said the first story is about a firefighter who gets AIDS. The second is about the girl with POTS. I think it must be the "Blood and Fire" one. It is on at 6pm. If you go to the Discovery Health Channel website, http://health.discovery.com/, you can find it by clicking on the "What's on this week" link to the left. You have to change the time to 6pm-9pm anad the channel to Discovery Health and then click go to see it. Michelle

Hi everyone, Per my sister, Mystery Diagnosis will be airing a story on Feb. 19 at 6pm about a girl who has POTS, EDS and chiari malformation. Mystery Diagnosis is on the Discovery Health channel. Hope you guys can catch it! Michelle

Maybe you could try books on tape or books on CD? Most libraries have outreach services for the homebound and they will deliver items to your home free of charge. Michelle

I'm not sure why you are getting that message, but I will check into it. In the future, please send questions for moderators to one of us via email or PM. Thanks, Michelle

I'd say the overall (dramatic) effect dysautonomia can have on someone's life. Also how symptoms can vary day by day and that people with dysautonomia can feel sick without looking sick. Michelle

That is just awesome, Nina! Michelle