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Posts posted by It'sMyLife

  1. I was just prescribed Plavix for AFib and a possible atrial septal aneurysm (still have more testing scheduledfor for that). I took the first pill last night and was ready for bed much earlier than usual and had a more difficult time than usual waking up this am. I've been sleepy all day as if I'd taken a sedating antihistamine. But, it got worse with a POTS flare after my shower which also resulted in a crazy miserable bp of 115/100. It improved to 119/90 after lunch, but I still don't feel back to normal.

    Anyone else have issues with Plavix or other anticoagulants in general? Is this something that might taper off as my body adjusts? I can't go on like this for too long, especially with no hope of improvement.

    My cardio is fairly knowledgeable with POTS which I'm grateful for, but it's not one of the things he specializes in so I'm not sure be has many patients with POTS. I'd guess I'm probably one of his first "Plavix and POTS" patients.

  2. Yes! I found this thread doing a search for "B vitamins + dysautonomia" to see if there is anything reported about them being incompatible. Every time I try starting them up I get palpitations, presyncope, and a sensation that my POTS is flaring up, but vitals are pretty normal. I'm trying again, this time titration up hopefully.

    I suppose there's the possibility that we have an MTHFR mutation and we've been compensating for the lack of methylation so long that our bodies don't know what to do with the influx of B vitamins. But, I've never been tested for it.

    I just know I have been on PPI's do so long that I worry about the poor absorption of B vitamins. Though, my recent labs had me on the low end of normal for folate and B12.

    I'm hoping to figure it out soon! I've always wondered if the vasodilation from some of the b vitamins could be a culprit. Idk.

  3. I take Bystolic 5mg once daily. It works very well for controlling the hyperadrenergic POTS symptoms for me. The only drawback is the daytime sleepiness. I know it's the med and not the POTS causing this because I had to stop the beta blocker for the first trimester of my pregnancy and just went back on it when I started the second tri. As soon as I went back on it that desperate need to take a nap after 12 o'clock struck again. It's not just fatigue, it's pure sleepiness like I wasn't allowed to sleep at night. While I did feel just terrible without the medication in my first trimester, the one thing I did not experience was this extreme sleepiness.

    So, to get to my question: When do you find is the best time for you to take your beta blocker to combat the sleepiness it causes? Right now I am taking in in the morning. I used to take Toprol XL at bedtime because the side effects were even worse. I do not remember now why I started taking this one in the morning. I want to say maybe it's because I had trouble waking in the morning if I took it before bed, but I have trouble waking no matter what now. Thanks for reading!!

  4. This condition of the tongue is called migratory glossitis (aka geographic tongue). My husband has it and does not have dysautonomia. Just some info for what it's worth.

    I've been reading the handbook. Thank's Louby! It has alot of useful info. Does anyone know the main difference between POTS and PAF (pure autonomic failure) also I read that POTS can be a form of autonomic neuropathy. The symptoms of that are a little different . It includes a strange symptom - the tongue has small bumps (taste buds) and with this disorder it has spots where those bumps are missing. It looks like cigarette burns is how I describe it but sometimes it's worse than others and when it is real bad they can be very sensitive to spicy foods. I was born with that symptom!! Only two people in my family are known to have these "spots" me and a female cousin of mine who by the way has mitro-prolapse valve with few pots symptoms! The handbook shares alot of info on cause and similarities to other dysautonomic disorders. I already have a list of things to ask my doc next time. My family doc told my mom it was called a geographic tongue and they didn't know what caused it but that it was harmless.So imagine my surprise when there it was as a symptom of neuropathy! I've never even told Dr. H about those spots because it didnt occur to me to.Also I saw tests called the valsava maneuver and a pet scan to test (with definite results) for PAF anyone had those?
  5. Thanks again everyone!

    The reason I do not think it is food allergies is because I have done a lot of research on food allergies and it just doesn't feel like it fits to me. My daughter has non-IgE-mediated food allergies (dairy, soy, tomato, eggs) so I have done a lot of reading on the topic. It sounds likely that I would since an imediate family member does, but I'm just not feeling it. I know it wouldn't hurt to try and elimination diet though, but it so incredible hard as it is to feed my daughter her diet. If I had to prepare two separate diets in order for us to both get the nutrition we need, I just don't know what I'd do.

    I guess I could have mentioned that besides the eggs, my breakfasts usually never include my daughter's allergens. Most of the time I'm at home in the am eating with her. It is true though that when I was nursing her I did not eat any of her allergens and my POTS symptoms did not flare back up so badly until I weened her (at 18 mos) and my periods came back regularly as well. I guess there's only one way to know if it is the menstrual cycles or the food that caused that reaction.

  6. I take Bystolic 5 mg every morning. I started it about a year ago. So, I'll try to remember how I felt. I started with 2.5 mg for 5 days and then up'd it to 5. I'm pretty sure I got relief within a day or two. I was so tachy all day and had strong cardiac awareness with palpitations, especially at bedtime. I don't remember it making me as sleepy as the other bb's I've been on. And that's one of the things they brag about this new bb for.

  7. I was referring to the food allergy... it doesn't seem like it would only effect me in the morning if it were an allergy. I have eaten those same foods at night without the same response.

    No, your response will be different at different times of day because the hormones in your body that keep bp low are at their peak in the morning and then lessen across the day. Check out information on cortisol, as well as catecholamines--you can find all of this on the main DINET/POTSplace website. This is why mornings tend to be so hard for so many of us.


    ETA: Thanks Mighty, for the recipe!

  8. Thank you for the helpful replies.

    I took my bp today before and after eating and there was a noticable drop in bp and rise in pulse. I hope to post the numbers soon

    After having read what has been written, so far. All I can think of is FOOD ALLERGIES!! It can cause the pulse rise too. Just about everything listed as being eaten at breakfast in the first post, can cause allergies in sensitive people. It may not be a full blown allergy but a sensitivitiy to it.

    It could be sensitivities but I have the most symptoms in the morning. Don’t you think that I would have the same response regardless of the time of day?

  9. http://www.amjmed.com/article/S0002-9343%2...0235-3/abstract


    Extraarticular manifestations of the joint hypermobility syndrome may include the peripheral nervous system. The purpose of this study was to investigate autonomic function in patients with this syndrome.


    Forty-eight patients with the joint hypermobility syndrome who fulfilled the 1998 Brighton criteria and 30 healthy control subjects answered a clinical questionnaire designed to evaluate the frequency of complaints related to the autonomic nervous system. Next, 27 patients and 21 controls underwent autonomic evaluation: orthostatic testing, cardiovascular vagal and sympathetic functions, catecholamine levels, and adrenoreceptor responsiveness.


    Symptoms related to the autonomic nervous system, such as syncope and presyncope, palpitations, chest discomfort, fatigue, and heat intolerance, were significantly more common among patients. Orthostatic hypotension, postural orthostatic tachycardia syndrome, and uncategorized orthostatic intolerance were found in 78% (21/27) of patients compared with in 10% (2/21) of controls. Patients with the syndrome had a greater mean (? SD) drop in systolic blood pressure during hyperventilation than did controls (?11 ? 7 mm Hg vs. ?5 ? 5 mm Hg, P = 0.02) and a greater increase in systolic blood pressure after a cold pressor test (19 ? 10 mm Hg vs. 11 ? 13 mm Hg, P = 0.06). Patients with the syndrome also had evidence of α-adrenergic (as assessed by administration of phenylephrine) and β-adrenergic hyperresponsiveness (as assessed by administration of isoproterenol).


    The autonomic nervous system?related symptoms of the patients have a pathophysiological basis, which suggests that dysautonomia is an extraarticular manifestation in the joint hypermobility syndrome.

  10. Thank you all so much for your informative and helpful replies. I will experiment with my morning diet and do some more reading. I may ask my Dr. for a script for a glucose monitor and then I'll know if I'm actually becoming hypoglycemic or not.

    Thanks again!

    ETA: I am also going to take my bp before and after I eat tomorrow to find out what's going on there. I usually only take it after I eat and start to feel bad.

  11. I found a good one here I think. I haven?t read the whole thing as my 3 yo is playing with legos all over me right now. Lol



    Postprandial reactive hypoglycemia (PRH) can be diagnosed if sympathetic and neuroglucopenic symptoms develop concurrently with low blood sugar (< 3.3 mmol). Neither the oral glucose tolerance test (OGTT) nor mixed meals are suitable for this diagnosis, due to respectively false positive and false negative results. They should be replaced by ambulatory glycemic control or, as recently proposed, an hyperglucidic breakfast test. PRH patients often suffer from an associated adrenergic hormone postprandial syndrome, with potential pathologic consequences such as cardiac arrhythmia. PRH could result from (a) an exaggerated insulin response, either related to insulin resistance or to increased glucagon-like-peptide 1; (-_- renal glycosuria; © defects in glucagon response; (d) high insulin sensitivity, probably the most frequent cause (50-70 %), which is not adequately compensated by hypoinsulinemia and thus cannot be measured by indices of insulin sensitivity such as the homeostatic model assessment. Such situations are frequent in very lean people, or after massive weight reduction, or in women with moderate lower body overweight. PRH is influenced by patient's alimentary habits (high carbohydrate-low fat diet, alcohol intake). Thus, diet remains the main treatment, although a-glucosidase inhibitors and some other drugs may be helpful.

  12. I'm not sure I have anyone I can borrow from but maybe my doc can loan me one???

    I just came accross something interesting though. This is part of a Wikipedia article on Reactive Hypoglycemia.I found it here http://en.wikipedia.org/wiki/Reactive_hypoglycemia

    Postprandial Syndrome and Adrenergic Postprandial Syndrome

    If there is no hypoglycemia at the time of the symptoms, this condition is called Postprandial Syndrome. It might be an "Adrenergic Postprandial Syndrome" - the glycemia is normal, but the symptoms are caused through autonomic adrenergic counterregulation.[9] Often, this syndrome is associated with emotional distress and anxious-behaviour of the patient [1] [2]. Dietary recommendations for reactive hypoglycemia can help to relieve symptoms of postprandial syndrome.

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