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I saw my electrophysiologist yesterday. My heart stopped beating on Wednesday. He said there was nothing he could do until my heart stops beating often. Then he can do an EKG while it is happening and see what is going on. (Now that is not a very encouraging thing to hear...until your heart stops beating often. Try living through that experience just once and see if you can be quite as nonchalant and passive.) All this to say, he couldn't address it or treat it. And he is known to be a brilliant expert in EP. "Whom have I in heaven but thee? And there is none upon earth I desire beside thee. My heart and my flesh faileth, but God is the strength of my heart and my portion forever."

I am so sorry about what happened. Well-meaning physicians send us off with a prescription but they haven't a clue what an adverse reaction is like. I grieve for your suffering. I wish I could be with you - get you a warm cup of .... whatever you like. My family has had personal experience with Provigil. Apart from it being prohibitively expensive, it caused a very alarming side effect in the vision field. The opthalmologist simply said, "I've never heard of that side-effect before." So here we are: somewhat desparate guinea pigs. Nevertheless, for lack of physical presence, I send you {{{{{{{ hugs }}}}}}} and affirmations.

I don't get out much, and when I do, it is to go to a great restaurant, see a good movie? No, to indulge a doctor. Bummer. Indulge is the word because I enter and exit with the same information and treatment. So I go very seldomly. Except when symptoms become unbearable and I'm desperate. Like now. I have an appointment with an electrophysiologist this week. Hope he can help. Hope he knows about dysautonomia... I have two doctors, soon to be 3 (an electrophysiologist) Internist - excellent, outstanding, wonderful Cardiologist - dropped becuase he determined there is nothing wrong with me...after $$$$ of tests but no tilt. Electrophysiologist - referred to by the cardiologist (who said I was OK) who categorically insisted that I do indeed have POTS and dysautonomia but didn't have any treatement suggestions...Lots of sympathy, though. Neurologist - very knowledgeable but too busy for patient patient care (chief of neuro at med school) I've also seen numerous others over the years but since I extremely dislike going to doctors, I try to avoid them... Great encouragement to see that I'm not alone with more doctor business cards than business business cards!

"I'm a little confused by this statement. Can you explain more what you me?" Thanks for the info. I'm just a little confused. I can function like a perfectly normal person if I just sit, albeit I cannot use my eyes for close work (get blurry). But I cannot do any physical work, stairs, or be exposed to anything stressful to the autonomic system - like watching an intense movie or laughing a lot. It just seems to me that I would therefore be "disabled." Yet who makes that determination, and once it is made, what can I do with it? -- I hope that better explains what I meant to say the first time around. Again, thanks for all your info. You guys have been so helpful because I can research other entries and thereby determine if a random symptom is typical dysautonomia stuff or is something needing to be addressed by the doctor.

You guys are great, and I am so thankful to come back "home" and hear from you. My situation has been difficult since I bought a foam "medically-approved" motion bed and had a toxic phenol reaction to it, causing POTS and dysautonomic stuff. I still have lots of weird arrythmias and am overall very weak, needing bedrest around 12 hours, and otherwise unable to do housework or shop except in 15 minute increments. Also now have a cough I can't shake. Who is disabled, who makes that determination, and if you are disabled, what do you do with that information? Aside from the disability parking sticker, which I already have, are there any other "benefits?" Just wanted to know...

Side effects are apparently not all that uncommon. My good friend has had two MRIs. In both instances, she had disconcerting cardiac issues - raised BP and low circulation for the subsequent 24 hours. Resolved with time. They say there are no side effects, I think becuase when patients call in to report them, the doctor says "I've never heard of a side effect like that before." Not surprising. I was told that by physicians regarding the POTS issues, too. Also, I have an acquaintance who does research specifically on MRIs (biomedical engineer) and he has lots he's not saying about the risks and dangers of MRIs. When I asked him if there were any, he just looked at me. He's not allowed to talk about it because of the research he's doing. So for what all that's worth... He did advise me never to have an MRI unless it was absolutely necessary. (He doesn't know about my health issues, assuming I'm "normal.") Hope this helps.

1. Cathy 2. 54 3. Autoimmune dysautonomia with POTS (Feb 2005), colonic inertia, reactive hypoglycemia, etc. 4. 53? 5. north of Chicago 6. can't go there right now. too difficult 7. can shop on level ground for 30-60 minutes if walk slowly and stop lots, sit, etc. Otherwise, sit most of the time. cannot "do" much else because of "exercise" intolerance. limited on what I can eat. temperature intolerant - cannot take baths. emotional intolerant - cannot watch intense movies or laugh for a long time. 8. florinef, midodrine, common vitamins and minerals 9. beta blocker, B12 injections, carrot juice, CoQ10, coffee retention, Oxygen, fluids, salt , vegetable digestive enzymes

I've got eating irregularities, too. I do best the longer I can hold off eating. So I usually don't eat anything until late morning/early afternoon. Then I try to keep the volume of food down to under 1 cup (an apple, a hot dog with bun, etc.) which usually means eating only one type of food at a time. Also, and as a former super organic health nut, I can't make heads or tails out of this one, but I feel much better if I eat what I used to consider un-food: bread, chips, junk food, ice cream, cooked canned vegies, lunchmeat. But now that I think about it, most of these foods are very high in salt, so maybe there is a connection here?

Recently, I've had breathing difficulties off and on. It is shallow, and I have no desire to inhale or exhale. Respiration can go down to 6. As I looked into the various dysautonomias, I came across two terms: Ondine's Curse and Cheyne Stokes. But I have no answers. However, last night I did post the question to the Forum regarding these two terms in hopes of getting some direction. I'm so sorry you're having these difficulties. I don't know if they are like mine, but I do know that any breathing irregularity is horrible. Hope you get some responses that help you.

Anyone know the difference between Ondine's Curse and Cheyne Stokes? And does anyone have either one? How does dypsnea fit in to these two? Lots of questions. I'm struggling right now with recent deteriorations. I'm hoping it's transcient. In the meantime, I'm trying my best to find joy in the circumstances.

Dear Melissa, I am so sorry you are in pain. You've asked for suggestions...and below are my wild cards. I have a few pain protocols that have worked in the past sometimes. You know, with POTS, there's no consistency or confidence in any treatment... Life is so hard but I'm so thankful to still have it. What a conundrum. Two things I sometimes do: a) hot caster oil packs. I've read enough to be personally convinced that electric hot pads are contraindicated for medical healing intervention because of the EMRs and their effect at the cellular level. However, I do use a microwave heating pad. I soak cotton flannel with organic caster oil, lay it on the sore area, then put saran wrap (several layers so it doesn't tear) over the flannel (so the oil doesn't get on the hot pad or bed) and then put the hot pad on top. It should be confortably warm. And I let it stay on until it cools down. It usually helps. coffee enemas. (Can you believe I'm saying this? It's for pain not related to GI motility issues.) I follow the Gerson protocol, and it is a great relief. If you are interested in finding out their approach, please refer to their book (available on their website at www.Gerson.org) or e-mail me and I'll give you the details. It's really easy, and has been very helpful. Hope this wasn't too blunt. But pain is pain. I'll be praying for you tonight.

Deb - You said some doctors suffer from RIDS (rude ignornant doctor syndrome). I like it. I'm using it. I've got some RIDS doctors that I've gotten rid of, too! Thanks for the idea of a new and unfortunately appropriate acronym for some of them out there.

This is great! Having never done Internet before, I was rather skittish about the name thing. Icthus is the Greek word for Christ, and was used in times of great Christian persecution to identify followers of Jesus. One person would draw an arch in the sand and if the other were a Christian, he would draw his arch, making a fish symbol. They would then know they were brothers in Christ, and could speak freely to one another. I chose Icthus because I feel like I am in a place of great difficulties. One night three years ago at the dinner table, I gave my family that day's doctor's appointment results (which were a result of POTS but I hadn't been diagnosed yet.) At the conclusion, I said to my husband, "Don, you can't die before me. I can't live without you." "Don't worry, Lefty, you'll be just fine," was his response. 14 hours later I was a widow with a 15 and 18 year old, both at home in home school. My best friend had died at 6AM while trying to rescue our family puppy on a frozen pond. This is where Icthus comes in. Now my best friend, protector, defender, shield, and comforter is Jesus. Were it not for Him, I probably would not be alive right now. And so, here I am, drawing my arch in the sand but I'm definitely not doing it bending down. Thank you so much for being here. You all have been such a comfort and confirmation to me. I read your entries, and then know I am OK - it's "just" a POTS thing that my body is doing. Thank you, thank you. By the way, I asked my doctor for a disability parking placard because I lost my valet service (Don). I received it in the mail a week ago. YEA!

Great question! I used to be an avid crafter - knitting, needling (of all sorts), etc. I find that most of it takes too much concentration OR makes my vision very blurry because of the eye strain in following the pattern details. Bummer. The coloring idea is marvelous. I enhance it by adding texture. You might buy a book on pencil watercoloring or even colored pencils to get ideas on creative techniques like texturing, which is a ten-penny word for adding squiggles. I love fuzzy coloring with markers - they are $4 sheets of cardstock with black fuzzy stuff. The designs can be geometric so you can randomly fill in the color to make a mock stained-glass window effect. You can buy these everywhere. The pillow thing is a big issue. I use a big foam wedge (almost the width of a twin bed) that I set upright - making a two-foot tall triangle. Then pillows. Wonderful pillows. The wedges used to be sold in JoAnn Fabrics. Haven't been shopping there in a long time. Call first. And this may not solve a neck-pain problem. Also, my reclining loveseat in my bedroom is a life-saver. I sit here a lot and do lap work, like right now.

Dear Mighty Mouse, This is really bad news. I am so sorry. You might consider an age-old stop-gap measure - put your feet in a washpan of cool water. As the feet and head go, so goes the body. I'm not sure about the ramifications for POTS people, but this is helpful for some people with non-POTS bodies. My friend keeps cool this way, but then, she doesn't have POTS. I hope you find some nice friend or neighbor who will put you up for the night. Cathy

Dear Deb, I saw a neuro-opthamalogist at Froedert Hospital, Milwaukee for vision problems. My neurologist, treating me at the time for "dysautonomia", wanted to get a read on the vision problems I was having - blurry vision unrelated to quantifiable circumstances. The upshot - mostly normal. If anything was wrong, it wasn't wrong enough to treat or to tell me about. My appointment did not include a refraction. I was given a thorough peripherial vision exam (not like at WalMart), a very lengthy "scrutiny" of the eyeball and nerve, several photographs of the eyeball, a few other non-remarkable tests. Hope this helps you. As I have experienced with the several neurologists I've now seen, I'm sure neuro opthamologists vary in their approach as much as as the neuro's vary. Some give outstanding exams; others are cursory. I don't know where my neuro-opth falls - cursory or outstanding. Cathy

I agree - but then I'm partial to EP's. In April my cardiologist referred me to an EP guy for an ablation. In his cover letter to the EP, he even said that the patient (me) presented with complaints about dysautonomia but that he saw no evidence of it. The EP guy, however, reviewed all the tests and said every test was conclusive for POTS - a type of dysautonomia. Cheers for the EP's willingness to not be blinded by his peer's opinion! Not only did he explain what my heart is doing, but he also told me why he wouldn't do an ablation, like the cardiologist wanted. So, I have personal experience where I was sent specifically for an ablation and the EP said it was contraindicated because of my POTS and other presenting conditions. Yea to my EP. If you do decide to go to the EP, I hope your experience is as positive and helpful as mine was.

Dear Dayna, This is my first ever reply on a forum, and I'm not sure if it's going to work or look right. But it is not my first time with alternative medicine. Having had POTS since '91 but not diagnosed until '05, I tried numerous alternative protocols including chelation, pH balance, medically supervised aggressive detox, IV hydrogen peroxide, mega vitamin therapy, and more - all because the doctors said I was OK but my family knew differently, so... I am very interested in your direction because I have decided to return to alternative. It's a big step, and since my husband died (drowning accident while rescuing our puppy on a frozen pond) I lost all desire to fight for my health. That was 3+ years ago. And I have deteriorated significantly. Coincidence? Stress from being a widow with two home school teenagers? Who knows. I just didn't want to do alternative stuff. It is so much work and time. But, for what it's worth, I got the classic POTS symptoms in '91. By '95 I was rather shut down, and with no allopathic (M.D.) support, I turned to alternative - the Gerson protocol of organic carrot juices, vegetarian organic diet, B12 shots, bowel cleansing, etc. I got so much better that I could walk 4 miles and do school. Since some bothersome cardiac symptoms continued, I went to Mayo in '98. The physician labeled me (to all the other physicians) as having somatoform - so the entire effort was wasted even though I failed the neuro exam. That's another string (right word?). He also scoffed at the alternative protocol. That was enough for us. We came home and went with the SAD diet. By '01 I was a mess again. OK, so the regression caused by "life" or the absence of nutritional support? Like you, I'm hoping the latter. I restarted the juicing and a more careful diet with digestive enzymes - which help a lot. I restarted B12 shots in June - which has improved the energy level. I'm not doing vitamins only because the concentrated "food" is more than my body can handle. I go into reactions. As an aside, the diagnosing physician, an electrophysiologist, told me in April that there isn't much out there to help POTS patients, especially me since I can't do the standard meds. He then told me to try any alternative protocol I thought was reasonable because he felt it made no sense to do nothing. Maybe his words might be of comfort to you. They have spurred me on to reconsider the alternative stuff. If only, now, I can persevere and do it on my own. Tough. I will be praying for you - that these nutrients will support your body and bring restoration at the cellular level. Life is so hard. Keep us posted. And I like what you said - stay positive. Easier said than done, but this forum is one great means to help us readjust and stay positive when symptoms are overwhelming. Thanks for being here you guys. You're all great!

I've made a quantum leap and am doing a forum - the first time ever - so I really don't know if I'm doing this correctly. I have the same history scenario as most of you. Misdiagnosed since 1991 by the locals, Mayo in '98, Cleveland Clinic in '03. I finally got to the point of carrying a copy of a shrink report valildating a "normal" profile to dismiss the typical diagnosis by the physician. That leaves them stuttering for closure. Anyway, the diagnosis finally came after the next bout of very expensive tests in March '05, and your forum has confirmed it. Heartfelt thanks to each of you. I'm just so sorry that it's your suffering that has validated my suffering. Mourn with those who mourn. Question: Myknees/legs are having a difficult time a) transitioning from sitting to standing, holding up my body for the first 10-15 steps of walking, and c) the deterioration is progressing such that I can quanitfy the change on a weekly basis. The knees want to buckle while transitioning. After this initial glitch, I am ok. Now all of you know that "ok" means the POTS symptoms are "manageable." I chuckle when I use that word with physicians. They think "ok" means walking around the block. I'm thinking "ok" means getting to the kitchen. Speaking of which, aren't cordless phones the greatest? Now I just keep it in the skirt pocket, and no longer need to run to get the phone. Just another little thing to be thankful for. Anyone with the same problems - and are there any remediations?