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Re: I need your prayers [Re: Longstrides] #36754 10/11/2008 11:33 PM
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gene Offline
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Still praying for you guys

Re: I need your prayers [Re: gene] #36787 10/13/2008 12:07 AM
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Gary Offline OP
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Well they may have something figured out. Today they think she might have POTS. Postural Orthostatic Tachycardia Syndrome - Not as bad as cancer or a brain tumor but very difficult to treat and a long-term problem.


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Re: I need your prayers [Re: Gary] #36802 10/13/2008 2:02 AM
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Very sorry to hear that Gary. I will keep her in my prayers.


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Re: I need your prayers [Re: Tigger] #36804 10/13/2008 2:38 AM
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Dan B. Offline
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Gary....does this have any throw back to the surgery she had several years ago?

Last edited by Dan B.; 10/13/2008 3:28 AM.

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Re: I need your prayers [Re: Dan B.] #36808 10/13/2008 2:55 AM
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Still hoping for the best Gary!!! The prayers are going non stop.

Lars


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Re: I need your prayers [Re: lhunter03] #36813 10/13/2008 10:33 AM
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Gary, sorry about what you are going through! I am sure you have had some troubled times over this.


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Re: I need your prayers [Re: Dan B.] #36819 10/13/2008 2:25 PM
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Gary Offline OP
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 Originally Posted By: Dan B.
Gary....does this have any throw back to the surgery she had several years ago?

I don't know. Very little is really known about this and most doctors have never heard of it.


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Re: I need your prayers [Re: Gary] #36821 10/13/2008 2:44 PM
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Well continue to pray for her and the family.


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Re: I need your prayers [Re: rupe] #36829 10/13/2008 4:31 PM
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Your daughter and family will continue to be in our thoughts and prayers.


Experience is the best teacher, hunger good sauce.
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Re: I need your prayers [Re: pab1] #36834 10/13/2008 8:15 PM
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Prayers still coming for your whole family and the docs.
Glad it's not a brain tumor or cancer. Keep the faith.


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Re: I need your prayers [Re: Gary] #36854 10/13/2008 11:44 PM
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 Originally Posted By: Gary
 Originally Posted By: Dan B.
Gary....does this have any throw back to the surgery she had several years ago?

I don't know. Very little is really known about this and most doctors have never heard of it.


Which I guess explains the inadequate reception you got from the first bunch of doctors. Too bad anyway, but at least it does not seem to be deadly....your daughter will be in my prayers too.


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Re: I need your prayers [Re: Mikewin] #36970 10/15/2008 2:01 PM
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Gary I looked it up on Wikipedia and the following paragraph is what it has to say about it. The good thing is that it is NOT life threatening. Another good thing is that the doctors now know what they are dealing with and can take the appropriate steps. God is good, he is with you and your family and we are all praying for you and your family.

Vin
----- --------- -----------

Postural orthostatic tachycardia syndrome (often referred to as just postural tachycardia syndrome or POTS) is a condition of dysautonomia, and more specifically, orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. This is often, but not always, accompanied by a fall in blood pressure. Several studies show a decrease in cerebral blood flow with systolic and diastolic CBF velocity decreased 44 and 60%, respectively [1] Patients with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many patients also experience symptoms when stationary or even while lying down. Symptoms present in various degrees of severity depending on the patient. POTS is a serious, though non-life threatening, medical condition that can be severely disabling and debilitating. Many patients are unable to attend school or work, and especially severe cases can completely incapacitate the patient.


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Re: I need your prayers [Re: dertiedawg] #37005 10/15/2008 8:42 PM
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Gary,
looks like you have a great support of brothers here that are committed to praying for your little girl. Man, what a blessing!

God will perfect that wich concerns you and your family.


I'll keep my Faith!
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Re: I need your prayers [Re: Slimpickens Ca.] #37133 10/17/2008 1:04 PM
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Gary,
Glad they found a possible cause of the problems. Sorry that is it not something simple. We will continue to pray for your daughter, your family and you. Let her know she has a lot of people pulling for her. Hang in there.

Re: I need your prayers [Re: Rick] #37138 10/17/2008 2:07 PM
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Hunlee is one that will pray for you!!!!!

hunlee


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Re: I need your prayers [Re: hunlee] #37171 10/18/2008 2:36 AM
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Montanan Offline
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Gary still praying partner.

Re: I need your prayers [Re: Montanan] #37172 10/18/2008 2:37 AM
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We are all here for you budddie!!!!

Lars


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Re: I need your prayers [Re: lhunter03] #37177 10/18/2008 3:27 AM
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Gary

I can only imagine what you are going through.
Continue foward, have faith, and hopefully all
will be resolved.

My father suffers from a similar condition, he
has gotten better. But when he had his first complete
blackout we all thought the worst. He was literally
fainting once a week in random places, restaurants,
at work. After many doctor visits, it turned out to
be some sort of stomach nerve that was affected with
stress and indigestions, made his blood pressure sky
rocket and he would collapse. It's been 6 years since
his last blackout. He takes bloodpressure pills and
tries not to eat spicy foods, so far he's cured.

I hope your little girl the best, God bless.
MigRod


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Re: I need your prayers [Re: bisleyfan44] #37182 10/18/2008 4:33 AM
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Gary,the post by D2 (DIRTIEDAWG) is correct,the diagnosis of POTS,while non life threatening can be a debilitating problem.In it's more severe form it can cause blackouts during positional changes,making it impossible for the patient to be able to work,drive a vehichle or take part in alot of day to day activities.THE GOOD NEWS IS: you now have a starting point,a diagnosis and some relief that your daughter does not have a more serious life threatening disease.A good reference point for information is of course the internet,but be careful,as I'm sure you know, not all info is accurate,while not all physicians are familiar with this illness (I have been a nurse for over 15 years,and have seen this DX twice)but there are specialists who will be able to point your daughters care in the right direction.Not all patients will respond to the first meds tried,just like any other illness,so be patient,and understanding with the healthcare team also.Eventually (soon) God willing your daughters symptoms will be controlled,and she can resume a more normal lifestyle.Keep positive thoughts,keep informed and keep your family first.
BEST WISHES TO YOU AND YOURS.
JIM

Re: I need your prayers [Re: 10drenkor] #37383 10/22/2008 12:17 AM
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 Originally Posted By: 10drenkor
(I have been a nurse for over 15 years,and have seen this DX twice)but there are specialists who will be able to point your daughters care in the right direction.Not all patients will respond to the first meds tried,just like any other illness,so be patient,and understanding with the healthcare team also.Eventually (soon) God willing your daughters symptoms will be controlled,and she can resume a more normal lifestyle.Keep positive thoughts,keep informed and keep your family first.
BEST WISHES TO YOU AND YOURS.
JIM


Gary still praying. Jim, so this is treatable with meds... that's great news. God is good.
Vin


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Re: I need your prayers [Re: dertiedawg] #37388 10/22/2008 1:45 AM
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Note - Below are brief descriptions of some commonly used drugs for the treatment of POTS. This partial list is not a recommendation for any treatment, just the factual reporting of some of the drugs doctors most commonly prescribe. I strongly urge all POTS patients to see specialists in the field and not ask ordinary doctors for treatment with these drugs.

Beta blockers are used by many doctors to treat POTS and neurally mediated hypotension (NMH). I have heard of more bad drug reactions to beta blockers than any other drugs used for the treatment of POTS and NMH, especially for those patients who have NMH secondary to Chronic Fatigue Syndrome. In these patients beta blockers can actually cause POTS. Some patients have found beta blockers to be helpful, however, especially those patients who develop POTS because of an overly sensitive beta adrenergic system. For these sensitive patients only very low doses of beta blockers are usually required.

Florinef is a common drug for the treatment of POTS and NMH. It is used to stimulate the body’s retention of salt and water and it also has a very small alpha agonist effect (vasoconstricting effect). The list of Florinef’s known potential side effects is hair raising, but at the small doses prescribed Florinef is not unusually dangerous. Some patients have had bad reactions to Florinef, but that is true of all drugs. Florinef makes you expel potassium so you must take potassium supplements to keep in balance.

Midodrine is a useful drug for many patients and is probably the most effective alpha agonist currently available. Alpha agonists work by constricting blood vessels, thus reducing blood pooling in the lower part of the body. Sold in the United States as ProAmitine, Midodrine has the advantages of being long lasting and is most like the body’s own natural vasoconstricting hormones in effect. Midodrine is a large molecule that does not pass through the blood brain barrier, which is helpful for patients who are drug sensitive. Because you do not want your blood vessels constricted when you are supine, it is essential that alpha agonists should not be used before bedtime. Supine hypertension is not only uncomfortable, it is dangerous. Alpha agonists are usually only prescribed for those patients who are not seriously overweight, who have consistently low blood pressure, and whose main problem is vasodilation. Florinef is usually tried first and Midodrine introduced for those who do not respond sufficiently to expansion of blood volume.

Some patients have an abnormal supersensitivity to alpha agonists which can present serious problems during treatment. Supersensitivity to alpha agonists can be caused by impaired amine uptake in the nerve endings of alpha receptors (denervation supersensitivity). Abnormal sensitivity can also be produced by a prolonged lack of norepinephrine release from sympathetic nerve endings, which leads to enhanced receptor responsivity (decentralization supersensitivity). These conditions usually produce a two to five times increase in sensitivity level, but there is a small subset of patients who are hundreds of times more sensitive than normal. For these patients vasoconstricting alpha agonist drugs are dangerous to use because of their sheer potency. If your physician prescribes any alpha agonist drug, consult with him about taking a very small test dose first in order to gauge your sensitivity level.

Celexa (citalopram hydrobromide) is a selective serotonin reuptake inhibitor similar to Paxil, Zoloft, and Prozac, but with the claim of fewer side effects and less potential for negative drug interactions. Serotonin reuptake inhibitors have been used for many years to treat neurally mediated hypotension and syncope (passing out). The mechanism through which central serotonin levels effect blood pressure and heart rate has not been fully mapped out. The net effect of Celexa appears to be to increase nerve communication and stimulation of the standing vasoconstriction reflex. This limits venous blood pooling and increases orthostatic tolerance. Celexa and the other serotonin reuptake inhibitors are known to increase norepinephrine release to varying degrees.

Celexa has been used with some success in treating patients who have been unable to tolerate the other drugs used for treating POTS and NMH. Celexa is reported to have the potential for reducing the effects of central sleep apnea, which often accompanies the onset of POTS. Treatment is started at a very low dose level of 5 mg a day or less, and gradually increased over time. Taking a full dose immediately is reported to make patients even more ill while a gradual increase in dosage is often well tolerated. Please note - I have never taken Celexa and do not personally recommend any specific drug or other medical treatment. This page simply passes on general information which is received from dozens of doctors and hundreds of patients. For recommendations of treatment you must see a specialist. I myself do not take any drugs for my chronic orthostatic intolerance; just salt and short walks as exercise.

GOOD LUCK,JIM

Last edited by 10drenkor; 10/22/2008 1:47 AM.
Re: I need your prayers [Re: 10drenkor] #37435 10/23/2008 1:57 PM
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Gray Lowe here will be praying, Glad to hear that alot of the bad is ruled out. Still not knowing and what to do about hurts. Keep the faith for yourself and your daughter

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