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Old 04-05-2008, 10:40 AM
 
6 posts, read 26,153 times
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emilybh, I can see that you are frustrated with your illness... and I hope you will find peace and good health.

For anyone else following this thread, I had asked if there was any point in trying the less expensive stockings, which have the lower compression. (15mm - 18mm) They are the over the counter ones, at $27.00 + ) I found my answer, when I tried them.
They did not help my daughter, so they were not worth the money.

The TED's anti-embolism stockings (which are actually less expensive if you buy the open toe ones -only $12.00!) DO help her, so in case anyone else was wondering, they ARE worth the money, at least for my daughter...

The closed toe ones are more expensive, but we find that the open toes are great for sleeping, and the closed toe for daily use.

Lissy (fromthehamlet)
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Old 04-05-2008, 11:17 AM
 
Location: SC
8,569 posts, read 8,932,627 times
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Quote:
Originally Posted by fromthehamlet View Post
emilybh, I can see that you are frustrated with your illness... and I hope you will find peace and good health.


Lissy (fromthehamlet)
HUH??? I don't have the illness. I was just recommending to those who do, as i do with ANYONE who has a chronic or degenerative disease, to go to the APPROPRIATE TYPE of doctor who is trained to find and eliminate CAUSES of disease and by doing so, help the patient get their robust health back. Medical Doctors are only trained in Allopathic Western Medicine and are NOT trained to do this yet most Americans think that if they don't have the answers, nobody does. This thinking couldn't be further from the truth. Once you understand HOW medical doctors are trained, you begin to understand what types of things they are GOOD at helping you with and what things they have little if any ability to help you with. All the chronic and degenerative diseases fit into the latter where as the doctors trained in Natural Medicine modalities are the experts in the latter.
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Old 04-05-2008, 03:52 PM
 
6 posts, read 26,153 times
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Quote:
Originally Posted by emilybh View Post
HUH??? I don't have the illness. I was just recommending to those who do, as i do with ANYONE who has a chronic or degenerative disease, to go to the APPROPRIATE TYPE of doctor who is trained to find and eliminate CAUSES of disease and by doing so, help the patient get their robust health back. Medical Doctors are only trained in Allopathic Western Medicine and are NOT trained to do this yet most Americans think that if they don't have the answers, nobody does. This thinking couldn't be further from the truth... the doctors trained in Natural Medicine modalities are the experts in the latter.

Please excuse me emilybh, I thought you were replying to my query, as one who suffers with POTS. I can see that you have very strong opinions with regards to conventional vs. alternative medicine, and Americans.

I'd like to hear from those who actually have the syndrome, or have children with the syndrome. (including Americans!) I'd like to hear what sufferers have tried, what has helped, how it helped, and what did not help.

That kind of information, will benefit us considerably.

Cheers!
Lissy
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Old 04-16-2008, 09:39 AM
 
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Default Postural Orthostatic Tacycardia (POT Syndrome)

I have a question for anyone out there....

Does anyone have experience with flying? We are planning a six hour plane flight, but are concerned about how it might affect my daughter's POT Syndrome. I'm just wondering if the pressure changes might affect her adversly..... Your thoughts are much appreciated.

Thanks,
Lissy
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Old 04-17-2008, 01:36 PM
 
6 posts, read 32,286 times
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Lissy,

I am so sorry - I did not see your post until now. I have sent you a private message. Please check for that - if you can't locate it, let me know. I'll be checking back here for a reply this time - I promise! I apparently did not get or overlooked the notification of your post previously.

Emilybh: We in fact do use a naturopath and have received some very helpful things via that route. There has not been any benefit for the orthostatic symptoms but we have definitely found some benefits for some of the manifestations of the condition. I agree wholeheartedly that a good naturopath is a very helpful part of the team working with these conditions. Like with any other health professional, though, it is important to search out one who is right for you. We have found that a combination of traditional and alternative medicine can provide benefits.

Last edited by calmseas; 04-17-2008 at 01:38 PM.. Reason: omitted word
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Old 04-17-2008, 03:58 PM
 
Location: Piedmont NC
4,597 posts, read 7,585,748 times
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Default Been there, done that. . .

After an initial episode in Fall 2003, I was diagnosed with neurocardiogenic syncope, too -- an autonomic nervous system disorder, or dysautonomia. I was forced to retire in January 2006 because I could no longer teach, and the school system really could not accommodate me when I did hit the floor.

There are two organizations that have been most helpful: DINET (I cannot recall what exactly the acronym stands for -- something along the lines of dysautonomia information network, etc.), and NDRF, or the National Dysautonomia Research Foundation.

There are several disorders, of which NCS and POTS are just two. Many of the symptoms overlap, and at best, any and all of them are incredibly frustrating. This won't apply to you, EnjoyEP, but studies indicate that hormones may play a role for women who suffer. While I have always had a very low BP and extremely slow HR, it never was a problem much, until I went through menopause. My initial, and worst episode, that landed me in the hospital for a solid week, was when I was 48.

The disorder frustrates the devil out of my poor husband who is convinced I should be able to be *cured* but at best, it is all in managing the symptoms in an attempt to give you something akin to a normal life. Like you, I did not respond well to midodrine, nor to florinef -- both designed to raise my BP. Following an EP study with a cardiologist/electrophysiologist, it has been determined my heart is fine, it's the nerves to the heart that go haywire. I am probably a likely candidate for a pacemaker, but so far, I have been fairly successful treating the condition with a beta blocker, an SSRI, and increased salt intake.

The DR surmises three things must occur for me to go down: my BP will take a dip, my HR will also drop, and the arrhythmia will kick-in, putting me on the floor. I feel the flutters, and my husband says the color drains from me. How long I am out determines how difficult it will be for me to recover, and if I can avoid passing-out, I fare much better.

The beta-blocker I have had the best success with is one that I take at night, called Innapran XL. It keeps me from experiencing the dips that I used to describe for my cardiologist as "feeling like an appliance that has had the plug pulled." The SSRI is also one that is routinely prescribed to heart patients, and I also take a baby aspirin.

In my situation, much of this in inherited. My Father struggles with low BP and arrhythmias, and he too has heard 'pacemaker' recently, but he is almost 80. My sister also has bouts of tachycardia.

I am so sorry you find yourself in this situation. It took me 3+ years to learn what triggers an episode for me, and what steps I can take to try to avoid it, or if I can't what helps the episode be a short-er one. Avoid being too hot or too cold, getting over-tired or over-stressed. Until you find a beta-blocker that will work for you, you will feel like a guinea pig, as there are literally 100s of them, and a number of approaches to tackling the problem. Stay well-hydrated. Drink gatorade, and take B-vitamins. Traveling may be difficult, especially flying. Until I got the episodes under control, I stood a good chance of losing my driver's license, and even now, if I have any idea it may be an 'off' day for me, I do not drive.

NDRF offers several publications, for sale, but you can also read them online. They were most helpful, as well as reading the posts of other sufferers. The founder of the organization, Linda Smith, was featured on Mystery Diagnosis this past winter. We were delighted the disorders were getting some attention, but there is no way to clue many in on the sheer frustration of trying to live with a chronic illness, day to day, especially when, for all practical purposes, you'll look fairly 'normal.'

Both sites also have lists of doctors and hospitals who specialize in autonomic nervous system disorders.
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Old 04-17-2008, 04:53 PM
 
6 posts, read 32,286 times
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Lissy,

My sincere apologies - I did not see your reply until today. I've sent you a private message. If you don't find that, post again here and I'll get back to you - I promise! I apparently either did not receive or overlooked the email notification about your reply and just saw it when I returned here today. I'll be checking for it this time so I don't miss it.

Cheryl
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Old 04-17-2008, 04:55 PM
 
6 posts, read 32,286 times
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Okay, I'm feeling stupid now - I should know better - I posted a similar reply today but didn't see it when I returned - just saw it now, so now I've posted this similar message twice - oops!!!
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Old 04-17-2008, 11:04 PM
 
Location: Maryland not Murlin
7,515 posts, read 14,690,038 times
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Quote:
Originally Posted by superfrog View Post

One other suggestion...if you haven't already done so (and I doubt your doctor has had the insight to request this), have your vitamin B12 level checked. B12 deficiency can cause any number of disturbing (and potentially serious) symptoms, including the fatigue, dizziness, and itchy/tingling feelings that you're currently experiencing. People who have this problem due to an absorption problem (as opposed to simply having a diet that's lacking in B12) won't benefit from multivitamins containing the B-complex. To sum it up, if a person is 1.) deficient and 2.) the deficiency is due to malabsorption or a similar breakdown in B12's metabolism, that person needs injections and/or oral (or sublingula lozenge) therapy--possibly lifelong. It can take a long time--decades, sometimes--for B12 deficiency to develop. Don't let your doctor tell you that you can't be B12 deficient because you're not anemic; symptoms (neurological symptoms especially) often show up a long time before the deficiency manifests itself as a blood disorder.

With that said, having a serum (blood) level test for B12 isn't enough, since here in the US our low end of normal (typically 200 pg/mL) is set way too low and many people experience problems in the "low-normal" (i.e., below 350, or even 400) range. Insist on a uMMA (urinary methylmalonic acid) test as well as the serum B12...uMMA is the gold standard for confirming B12 defiency. If your doctor doesn't know what this is, there's plenty of medical literature you can point to. You might want to check out Norman Clinical Laboratory, Inc. for info on both the condition and the test.
Um......B-12 is essential to the human body, however two things:

-Even though it is of upmost importance to a healthy functioning human body, you actually need very little of it and the little bit that you need can last a very long time. To my knowledge, it takes anywhere from three to five years for any symptoms to show.

-While it is possible to have a vitamin B-12 deficiency, it is actually very rare in developed countries, and, because you need so little of it, chances are almost certain that you will keep yourself supplied with enough just by eating root vegetables and beef (B-12 is actually a bacteria that is found in dirt). So unless you abstain from eating animals, root vegetables or taking supplements, then you will be fine.
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Old 06-10-2008, 11:43 PM
 
1 posts, read 3,389 times
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Originally Posted by fromthehamlet View Post
Dear Cheryl,

Thanks so much for your reply. I will certainly take you up on your offer to share your knowledge and support! God bless you - two childrens with pots..... I have so much to learn...

I am homeschooling my daughter. Everything was going wonderfully until she became ill. I've just ordered the achievement tests for her, and I'm crossing my fingers... She is too weary to do anything for very long. She's finishing 8th grade.... but honestly, she's mostly reading, because virtually any position that requires writing is unbearable for her. (Partly due to dizziness & nausea, and partly due to recovery from her spinal fusion. She had all but the last two vertebrae fused.) She's supposed to start high school in the fall - but I'm wondering how we are going to accomplish that...

The doctor wants to put her on Florinef (steroids )and salt. Do you have any experience with this? After a bad fall down the stairs a few days ago, I'm beginning to think we don't have a choice... She wears the TEDs compression hosiery - and we raise the head of her bed. The socks make a big difference in how she feels. We had hoped to get by on that - but the morning she fell, she wasn't wearing the socks..... and the scare was enough to make us re-think the risks we are taking by not using the steroids. Three different doctors are telling us to use them... It's just the thought - steroids for years... and possibly forever... what will this do to my girl?

I very much appreciate your responding to my post, and look forward to hearing your thoughts again.

Take care,
Lissy
I have read much of this fourum, I just want to say this is awfull to hear when children get this horrid illness, I really want to wish you and yours the best in battling this but as for taking florinef,,,,I would talk to a few different pharmacy's about the drug, My doctor wanted to give me the same but with potasium, well I check with several pharmacy's after reading the possible side effects of both, and concluded myself that the drugs were too risky to take and would probably kill me before if at all the desease would, several pharmacy's confirmed it for me, I filled it than told the doctor I was getting some of the side effects listed, switche my meds several times since than believe it or not been on celexa for three yrs. now and doing fair. just check those side effects on anything they give you,,,,if you fear it there is probably good reason, ,, confirm with pharmisist, , , fill it elsewhere so the doctor will get the prescription paper back indicating you did fill it,then call with your list of systoms but don't over due your list, hope this info helps in desciding the best if any med's to take
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