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About Pistol

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    gardening, my family, reading

    " And I think to myself - what a wonderful world!"
    Louis Armstrong

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  1. Hello @Cara - if orthostatic Vital signs confirm diagnosis of orthostatic hypotension or neuro-cardiogenic syncope ( same symptoms but actual syncope when the BP drops ) many physicians do not see the need for a TTT. However - if there is any question about a diagnosis or they want to determine of it is another dysautonomia, like POTS, physicians may order a TTT. Usually a cardiologist or electro-physiologist perform them. Depending on your insurance you may or may not need a referral from a PCP. And I agree with you PCP from a few years ago: increase in fluid and salt intake as well as compression hose and exercise are recommended for most dysautonomia cases - especially for symptoms such a yours.
  2. My sister ( who also has POTS ) has a condition called heterophoria, which means ONE eye points up, down, right or left instead of straight ahead. In other words: cross-eyed in one eye. Her brain does not process the information from her eye correctly and she constantly strains to see, cannot see patterns or many colors without getting overstimulated etc. She had this all of her life but just recently was diagnosed with it. She also cannot drive at night b/c of the lights. https://medical-dictionary.thefreedictionary.com/heterophoria
  3. @yogini - I am happy to hear that you made it through COVID without a flare!!!! I never felt POTS puts us at an increased risk for COVID related complications but I did expect a flare. Good News!!!!!
  4. Have you tried to call the pharmaceutical company that makes it? They should be able to tell you where to get it since they sell it to the sellers. You also may be able to get it through a Canadian Mail pharmacy. Also - have you tried Costco? They can mail it you if you do not have one nearby.
  5. My Father-in-Law took it for general cardiac health after a heart attack. He also has Hypertension. He did not have to reduce his BP meds after taking it for a long time, so at least in his case the BP reducing effects were minimal.
  6. @WBuffett - I have been on Lexapro for years with good effects on my POTS, no side effects. Earlier this year we added Wellbutrin ( SNRI ) and I did very good with it until I had an allergic reaction and had to stop. Personally I never shied away from taking meds for POTS b/c of listed side effects. Had I been too afraid I would not be better today. Of course I had some bad experiences but none of them were serious. My specialist recommends SSRI's and SNRI's for all of his POTS patients. I have found them to help with energy and fighting fatigue.
  7. @Pietro - yes, unfortunately mostly of us have been in your boat. Your symptoms do sound very much like dysautonomia. What I did is read up ( which you have already done ), print it out, bring it to your PCP and ask for a TTT ( typically the first step in diagnosis ). Many cardiologists do this, but they may not have the expertise to trat POTS. If your diagnosis is POTS I would ask for a referral to a specialist ( see our list here ) https://www.dinet.org/physicians/ You can find more info here https://www.dinet.org/info/pots/ Also - the book "Teh Dysautonomia Project" is very helpful, it is written BY physcians abd patients FOR physicians and patients, you can find it on Amazon. In the mean time increasing water and salt intake, wearing compression hose ( 30 - 40 mm pressure recommended ), exercises to tolerance and avoiding prolonged standing can help. Good Luck!!!!
  8. Dear @September - I was in exactly your shoes when I first became ill. I too had had syncope when I was a teenager. When I became severely symptomatic with POTS 10 years ago No one knew what was wrong with me. Since I was a nurse I went online and fairly quickly I realized I had POTS. My PCP sent me for a TTT which showed neuro-cardiogenic syncope ( also a dysautonomia ). After seeing many more ( useless ) physicians I asked my PCP to refer me to an autonomic specialist and all is history after that ... What you describe sounds like dysautonomia to me. You mention low BP - does your HR increase at all upon standing? If so you may have POTS. If not - you may have neuro-cardiogenic syncope ( NCS ). With NCS you do not have to completely loose consciousness, what you describe is still considered syncope. The low BP probably causes constant fatigue, frequent nausea, forgetfulness and trouble focusing ( as you describe ). These symptoms typically stem from excess adrenaline - could be a compensation effort by your ANS to counteract the low BP by releasing too much adrenaline into your system in order to raise the BP. I have Hyperadrenergic POTS and this happens to me, I also get ice cold hands and feet when this happens. There is a definite POSSIBILITY that you have POTS, and your doctor should refer you for a TTT, that confirms the diagnosis in most cases. Once you have a diagnosis usually a cardiologist ( especially EP ) might treat you - but they commonly are very underinformed about how to treat it. Therefore most of us seek help of autonomic specialists, a list here https://www.dinet.org/physicians/ PersonallyIi brought articles about POTS, highlighted all of my symptoms and showed them to my PCP. That's when he ordered a TTT. Here is moe information on POTS that may be helpful to you: I would print out articles and highlight your symptoms and then bring them to your physician. If you do not have tachycardia upon standing you most likely have NCS rather than POTS - which is still dysautonomia. Both POTS and NCS are treated with increase in salt and water intake ( a lot!!!!! ), and wearing compression hose, 30-40 mm pressure recommended. Especially in your case these measures could improve your symptoms significantly. Also daily exercise and avoiding standing still helps. So - read up, bring articles and a list of symptoms to your PCP, take your BP and HR lying, sitting and standing ( each after 1 minute and standing also after 3 and 5 minutes ) and bring the results to your doc. Ask for orthostatic Vital signs to be taken in your docs office ( make sure they wait 1 minute after sitting up and standing up - do not let them take them right after changing positions, the body need 1 minute to adjust to position changes - therefore the abnormal response is only proven after 1 minute ). Also - the book "The Dysautonomia Project" is extremely helpful, you can get it at amazon. It is written for both patients and physicians and has a wealth of information for both of us. I hope this helps!!!! Good Luck!!!!!
  9. This is called neuro-cardiogenic syncope, or vasovagal syncope. It is a type of dysautonomia. I have it - my fainting is caused by standing and stress, even a scare ( like a fainting goat ). Certain triggers can cause it - getting stuck with needles for blood draws is one. Lying down for draws can help, as you have already figured out. This type of dysautonomia can be diagnosed by TTT. I have both NCS and HPOTS, NCS was found first during TTT, HPOTS by TTT and neurotransmitter levels.
  10. @PotSdealer - same for me with Ritalin. To answer your question: No, I have not noticed my BP being lower from Ritalin.
  11. @Fujitsu - my autonomic specialist, who sees dysautonomia patients from all over the world, does not commonly use Benzos. I believe they mask our symptoms and the risk of addiction is extremely high. Since they tend to make you merely "feel better" it is not afar-fetched possibility to become addicted. Please be careful!!!!!! This is taken from the following website: https://myheart.net/pots-syndrome/treatments/ Benzodiazepines Benzodiazepines are the class of drugs that include Klonopin and Xanax. They are anti anxiety agents. There is some evidence that in patients with some forms of neutrally mediated passing out spells that Klonopin may have some benefit (Kadri et al). The evidence is limited though and certainly not conclusive. Benzodiazepines should be used with extreme caution and if possible avoided, as they are highly addictive and may result in dependence. They are certainly not first line treatment for POTS patients.
  12. @WBuffett - I am wondering if maybe your wife is not improving from the exercises b/c they are performed only lying down? Normally supine exercises are dome to maintain muscle tone while bedridden, they are a basic exercise that should be progressed to sitting exercises. The whole point of exercises is to not only strengthen muscles but also enable us to graduate to upright exercises. Deconditioned people - such as your unfortunate wife - need to re-learn how to be upright. This has to be done slowly, gently and carefully, but without teaching her body to be able to be upright again she cannot improve. Here are exercise tips designed for POTS patients, from the Dysautonomia International website: http://www.dysautonomiainternational.org/page.php?ID=43 Here is another good article: https://myheart.net/pots-syndrome/exercise-in-pots-syndrome/ Again - I would like to point out that your wife probably would benefit from In-home Physical Therapy. Her PCP can order this, even over the phone, so she would not have to endure a visit. I have found great results from using a rowing machine. I can exercise sitting down and it requires upper and lower body muscles, so it is a two-for-one. Mine is a bottom-of-the line cheap model with 8 settings. I started 1 minute on the lowest setting twice a day and have graduated to 25 reps on the third setting. Right now I am reconditioning from a bad flare and am back to 1 minute on setting one - another added benefit that I can change the settings to my abilities.
  13. @Fujitsu - I was first diagnosed with NCS ( neuro-cardiogenic syncope, also a dysautonomia ) by a cardiologist during TTT, and hyperadrenergic POTS was diagnosed by an autonomic specialist who did serum norepinephrine levels. Unfortunately in order to be officially diagnosed you will have to have the diagnosis of a physician. I too suspected HPOTS due to my research when i first became ill but our suspicions do not count as a diagnosis. When you have symptoms of POTS ( mainly tachycardia upon standing and orthostatic intolerance ) your doctor should perform AT LEAST orthostatic VS in his office. Most cardiologists will be able to perform a standard TTT, which should confirm the diagnosis in most cases ( there are false-negatives ). Some neurologists have experience with POTS, so do some endocrinologists. There is no guarantee that any of those specialists will know about how to treat this, so it is best to search for someone that officially treats dysautonomia patients ( see our list under the physicians tab ). Unfortunatley you are experiencing what is a typical finding for a POTS patient - the invisible illness. There normally are no audible murmurs or EKG changes associated with POTS, so a physical exam will not show any symptoms until you stand up, hence the importance to do orthostatic vital signs. There often is no change in BP - depending on the type of POTS. For me HR and BP can be perfectly normal sitting and changes as well as symptoms only show upon standing for a few minutes. When I first became ill - based on my symptoms and elevated HR and BP upon standing - my PCP ordered a TTT. After that I saw 4 more cardiologist that had different degrees of ignorance towards POTS. I did not find a proper diagnosis and treatment until I travelled 8 hours one way to a renowned specialist in the field. So I would recommend to ask your PCP to be referred to a cardiologist for a TTT to rule out ( or diagnose ) POTS and then seek help from a specialist ( they often have a long waiting list, and some require a confirmed diagnosis prior to scheduling a visit ).
  14. @Fujitsu - alcohol in any form is dehydrating, so make sure you drink a lot of water with it. Many people dilute their wine with water and also drink a glass of water in between.
  15. @POTSius - I take 5 mg Ritalin in the morning and it helps me be more alert, have less fatigue and enables me to be active and exercise. This helps with the orthostatic intolerance, helps with circulation, balances HR and BP etc. So - it does improve many of my POTS symptoms but only indirect. The direct effects from it are improved attention, increase in energy and less fatigue.
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