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Jules

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Everything posted by Jules

  1. I never had car sickness as a child but have unbearable episodes now and am wondering if this is just another issue with POTS. Even riding shotgun in a higher vehicle (truck) doesn't help. I've only taking Dramamine but it makes me really sleepy. Does anyone have other treatments that they have tried that work better?
  2. Did any of your insurance companies give you problems with this medication? My old doc said that it's really expensive and insurance might not cover it since it's an off-label use. I am going to see Dr. Arden in Oregon, who is a cardiologist, so it will be interesting to find out her thoughts on this medication.
  3. On the "What Helps" section of this site, Octreotide is listed under Vasoconstrictors. Has anyone tried this medication? Did it help you? Did it help with Exercise Intolerance? Section copied below. ********* Octreotide is especially useful in preventing vasodilation in the gut, thereby reducing splanchnic pooling. Its actions help to prevent postprandial hypotension (low blood pressure after meals). Octreotide inhibits the release of a variety of gastrointestinal peptides and also may reduce postural and exercise induced hypotension (Mathias, 2003). Octreotide does not often appear to enhance supine nocturnal hypertension, however one study reports that it is a possible side effect (Hoeldtke, Bryner, Hoeldtke & Hobbs, 2007). Octreotide is administered by subcutaneous injection starting at 50 µg 2-3 times a day, and dosages may be titrated up to 100-200 µg three times a day (Grubb, Kanjwal & Kosinski, 2006). A long-acting injectable form has also been developed.
  4. I think taking a beta blocker would possibly help. I think the adrenaline is the 3rd party that's causing all of the havoc. Your pancreas is actually having to do extra work to get your sugars back up from when the adrenaline smashed them in the ground. My insulin levels were normal, so there was another element that was causing the critically low levels, hence adrenalines role. In a normal person adrenaline is there to get things moving quickly when systems have dropped too low. With our bodies, the adrenanline kicks in each time we eat which disrupts the entire system, making the pancreas work extra to get out sugars back up. Each endocrinologist told me that my pancreas was working correctly on each of my glucose tolerance tests. My blood sugar eventually regulated within a couple of hours, though I felt like I had been run over by a bus. Having your insulin levels testing at the same intervals that your glucose levels are tested is a must. I've also read where the patient's Adrenaline and Noradrenaline levels were tested at the end of the test. It appears that these levels are high in POTS patients with Reactive Hypoglycemia. They wanted to test my fasting levels (glucose and insulin) to be sure I didn't have an insulinoma, basically a tumor producing insulin, resulting in low blood sugar levels. All my fasting levels were normal, so that was ruled out. The system goes chaotic only when I eat sugar and it's worse with fruit. They also did a CT scan of my pituitary gland to make sure there was no tumor there. One wanted to throw the Insulin Resistance label on me, which made absolutely no sense at all. I took Byetta, and Metformin, which made me so completely weak and lethargic. Was clear that this was not the correct diagnosis. Hope this helps.
  5. One of the side effects listed for various beta blockers is weight gain, because it slows your heart down, but as everyone knows, POTS patients can experience the exact opposite effect with many medications.
  6. Beta blocker users - have you noticed any fluctuation in weight? I'm obviously more concerned with weight gain than loss, obviously. Noticed steady weight gain while using Prozac, though it initially made me lose 14 lbs. w/in 2 weeks, think mostly water weight. I was going to the bathroom, non-stop. Prozac also definitely lost it's ump (improved energy and ability to workout diminished w/in months regardless of dosage increase).
  7. Have any of you noticed that beta blockers help with excercise intolerance? I have read several posts of people being able to run again. I can't run without getting light-headed, but am not taking any medications for POTS, as of yet.
  8. Like many of you, I have had reactive hypoglycemia for ~ 14 yrs. Seems that few endos understand blood sugar outside the insulin/glucose paradigm. I went to really well known Endos in Houston, only to hear them say that they've never seen anything like this before. Blood sugar dropping to 30-40's range within 1.5 hrs., with normal insulin. Thank goodness for Dysautonomia research. Those who are on beta blockers, who suffer from reactive hypoglycemia, have you noticed any improvement with glucose/fructose intolerance?
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