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Everything posted by Pistol

  1. @Conrad_hemsley - I am so sorry that you are in such bad shape. Please know that there are many other meds and treatments available. First of all - you should see an autonomic specialist ASAP ( if you do not already have one ). Second - inactivity will worsen all of these symptoms. There are many exercises you can do lying down and also sitting up. Getting moving and standing up - even for short periods - is essential in regaining even a bit of control. PT can be extremely helpful for deconditioning - ask your doctor to refer you to a licensed physical therapist. If you are unable to travel to one they do come to the home if you are housebound, just check with your insurance. -- If Propanolol is the only med you are taking it may not be the right one. You will need to make your prescribing physician aware so he will be able to review your situation and prescribe other meds if indicated. There are many other meds that have been proven to be effective but there is not ONE that helps for everyone. It takes a lot of trial-and-error to determine what helps you. --- Are you drinking fluids? Are you using compression garments to help you being able to tolerate being upright? The longer you stay down the harder it is to tolerate the upright posture - or any exercise for that matter. Please onform you physician of your situation so that he can help you find more effective treatment. BE WELL!
  2. So sorry @Womble that you have been having bad luck and that you have so much on your shoulders. I can totally see your concern! Good idea to also check with your cardiologist since he aslo knows your specific situation. Best of luck and please keep us posted how things go!
  3. Although I had symptoms since childhood - including fainting - I did not get seriously ill until my early 40's. Thinking back I had my daughter in 2004 and had problems since then but I compensated for them. In 2009 I was suddenly full-blown Potsie. The connection to delivery ( C-section ad epidural ) came only much later.
  4. Hello @Womble - I would call your pharmacist and ask this question prior to starting the med. But I would like to make you aware that these types of medications are very effective for the treatment of POTS - I myself take Escitalopram and have no side effects despite taking several cardiac meds . Also - internal excitement and anxiety can contribute to arrhythmias and ectopic beats, so if the medication helps you might find relief of those symptoms. If your pharmacist does not see any contra-indications with your Ivabradine I would give it a shot. I also have been very hesitant to try new meds due to worries about side effects or being incompatible with my other meds but in the end nothing bad ever happened, and had I not tried them I would not be much more controlled today. Is there a risk with trying new meds? - definitely. But you won't know until you take them. I have come to trust my doctors and since your GP and counselor agree ( and checked contraindications ) I think it should be safe to follow their advice.
  5. Hello @Christinvme - welcome to this forum!!! Although I am sorry that you have to be here due to symptoms!!! - I too get the visual symptoms you describe - floaters, blurred vision and the appearance of objects moving in the corner of my visual field. I was told that this MIGHT be due to the BP changes causing less circulation to the brain. Not sure if this is what is happening with you but this was one explanation they decided on with me.
  6. Dear @Lavender90 - I am not able to answer your question but I noted that some of your symptoms ( especially flushing ) in addition to the POTS could be related to MCAS. Have you been checked for this? It is a blood and urine test and is usually done by an allergist.
  7. @toomanyproblems - I think you lost me there!! I need to keep reading your info to understand it all. So - do you mean that a low RBC count but a high MCV ( and slightly high MCHC ) does not have an impact on the "viscosity" ( for lack of better words ) of the blood?
  8. I have seen both cardiologists and neurologists, even a neurologist within a major autonomic clinic. They all missed my diagnosis of hyper-POTS because they only were looking for the typical, most common POTS problems that they were familiar with. Once I did not present the typical picture of POTS they dismissed my - severe - symptoms as something else. In other words: they put a big red bow on me and sent me back to my PCP. Did not want to touch it. But I see more and more progress in the medical community's willingness to accept POTS - a lot of this is because it now gets taught in medical schools, so younger physicians are more likely to recognize POTS. My sister in Germany - who also has my type of POTS - saw several supposedly autonomic specialists and was dismissed by all of them. Then she moved and needed to find a new PCP and - boom! Jackpot!!! He is a young PCP but so open to and willing to learn about POTS that it was like a true miracle to her. Today she is on many of the treatments that I was ordered because he was willing to try them and she is greatly improved. So - you are right, cardiologists may not be the best type of physicians but neither are neurologists, necessarily. It is a open-minded and compassionate physician able to see the whole body-mind-spirit connection of a patient that will be most helpful to POTS patients, no matter what field of expertise he practices.
  9. @FileTrekker - yes, I know what you mean. It is true that the tachycardia in dysautonomia is driven by a different mechanism than other types. I have heard of some patients undergoing ablations for POTS without any effect at all. I also know of one unfortunate individual who agreed to have his sinus node disabled to stop the relentless tachycardia and now is totally dependent on his pace maker. The sad reality is that - still - many cardiologists are just so unfamiliar with the mechanics of POTS and attempt to treat the tachycardia as the CAUSE and not the result of POTS. Or they disregard the seriousness of the tachycardia as perceived by the patient, in other words they wave it off by saying that it is not serious or that it is not important. I have only met a few doctors that were open to the concept of POTS and therefore able to learn from and with their patients. These few doctors ( cardiologists and PCP's ) have been able to help POTS patients - and thankfully accept POTS patients - because of their open minds and ability to treat the whole person and not only One or Two symptoms.
  10. @Outaker - I believe Rauwolfia is the same as Yohimbe which is listed under medications effective for certain types of POTS in the literature.
  11. So - 6 months of IV bliss! And recently I had to skip one of my IV's due to travel and did not get one for 2 weeks. After 10 days I was going downhill - tachycardia, high BP, chest pain returned big time, fatigue and exercise intolerance. Had to stop exercising and mostly stay in bed. When the nurse came on day 15 and hooked me up I soaked up that fluid as if my life depended on it! And - the next day I was much better, although I am now reconditioning myself. That is another fact that many docs do not take into consideration: we work hard to be able to do what we can physically and every flare lands us being inactive and needing to spend weeks to get back to where we were. I have to see my PCP soon to get the fluids reordered to my insurance company. I guess if they ever tell me to stop them I will go back to square one. But this recent experience showed me that in my case I will most likely need fluids for ever, unless someone finds the magic pill.
  12. I am so sorry @blizzard2014 that you are having problems with pain again ( or still ). My father had severe phantom pain in his amputated arm and was on strong pain meds all of his life. In his older years he would hoard them ( by taking less on a daily basis ) and lived in fear of having unbearable pain attacks. Once he had so much pain that he broke into his stash ( we did not know about the stash) and overdosed accidentally. He survived but it was a wake - up call. Eventually his PCP switched his pain meds and that helped. I wonder if maybe a SWITCH of pain meds would be in order? My B-I-L has a bad back and is on chronic pain meds for years, he takes a different one about every 6 weeks. This has helped avoid needing to increase the meds since it does not cause tolerance as quickly. He mostly can tolerate his pain with this regimen. Have you discussed how you feel with your pain specialist? Living with chronic pain and also in fear of getting worse pain is hard. -- The change in meds could explain your flu-like symptoms and this sense of doom you are describing but you should still get it checked.
  13. I have noticed that when I am in a flare of POTS symptoms I have swelling of my ankles but also of my whole body. When I get IV fluids this goes away, I can loose 3 lbs from 1 l LR. Also - when I am symptomatic I urinate frequently but after the infusion I urinate normal. So - my theory is that it has to do with the RAAS ( renin - aldosterone - angiotensin ) system? Somehow we pass a lot of sodium in the urine and that causes fluid to go into the tissue instead of staying within the blood vessels? And that causes - I have hyper-POTS - a dump in Adrenaline and clamps down on the blood vessels therefore causing POTS? I could be completely wrong with this and if I am - someone please correct me?
  14. Dear @blizzard2014 - I am familiar with a certain sense of doom when I am about to go into a seizure or faint but it never lasts long ( usually stops with the drop - lol ). So I am wondering if this could be panic attack? You have so many medical problems that maybe your body is letting you know something is wrong? I really would notify your doctor of this right away since it needs to be investigated, especially since you noted the same feeling when you were acutely ill with low kidney function and gallbladder problems. A simple blood test might shed light on it. -- I had noted that you haven't posted anything lately and was hoping this was because you were better. Sorry that that is not the case. Please see your doctor and take care of yourself!!!
  15. Current literature still recommends increased salt intake unless hypertension is present and as directed by physician. All treatments are individual and what helps one may not be effective for another. If any one treatment is not working for ONE person it very well may help MANY others. The studies prove that.
  16. @JimL - cold hands and feet usually point to constricted blood vessels rather than dilated blood vessels. Blood pooling on the other hand is caused by excessive dilation of the blood vessels. Both mechanisms can cause symptoms of orthostatic intolerance or POTS. This can often be the determining factor in suspecting hyperadrenergic POTS vs other types of POTS.
  17. “ I am always so dizzy!” That was the beginning. My doctor shrugged his shoulders and said: “ We will keep an eye on that.” I knew something was off but really had nothing to report, I just knew I wasn’t right. I kept feeling like I was going to pass out. One day, I was home alone with my 4-year-old daughter, and I had to lie down on the floor knowing I was going to faint, heart racing, shaking. “ If Mommy goes to sleep on the floor dial 911,” I told my daughter and pointed to the numbers on the phone. But I recovered. A week later it happened. I was already wearing a heart monitor because of my complaints about having weird heartbeats. I was at work, a nurse at a cardiac unit, walking down the hall, heart racing and pounding, feeling like my heart was going to explode. When my knees got weak, I leaned against the wall …. when I opened my eyes I was on the floor, panic and noises and activity around me. 168/110, heart rate 160 – that was what they said. Minutes later I was in the ER, admitted and scheduled for a stress test in the morning. The heart monitor showed Tachycardia 160’s for 3 hours prior to the faint. Read Susanne's full story in the Feb 2019 edition of Dysautonomia News
  18. There is very little literature about the effects of POTS on pregnancy. There is far more studies related to the effects of pregnancy on POTS patients and their symptoms. However, to put anxious minds at ease, there has been no significant change in maternal or fetal related complications and 60% of patients remained stable or improved during pregnancy (Blitshteyn et al., 2012). According to current research 2/3 of women experience improvement of symptoms in the second and third trimester and 1/3 of women develop worsening symptoms. There does not appear to be a difference between first-time pregnancies versus multiple pregnancies and there is no evidence of adverse events in pregnant women with POTS. POTS does not pose an increased risk for pregnancy or birth. (Kanjwal et al.,2009) Physiological changes in pregnancy In the first trimester, there is a 50% increase in blood volume to supply the vascular system of the uterus, an increase in cardiac output and peripheral vasodilation. There is a decreased sensitivity to vasoconstrictors such as angiotensin and norepinephrine and an increased production of vasodilators like nitric oxide and prostacyclin. (Goodman et al., 1982; Gant et al., 1980) This can increase the acute symptoms of POTS in the first trimester, such as tachycardia, lightheadedness, fatigue and even syncope as well as other symptoms of POTS. Still, 60% of patients remained stable or reported improved symptoms during pregnancy (Blitshteyn et. al., 2012) Treatment of POTS in pregnancy The treatment of POTS in pregnancy is highly individualized and based on symptom relief. It is recommended that general guidelines for POTS treatment be used during pregnancy. (Sheldon et al., 2015) Usual first-line treatments are: Exercise - 25 to 30 minutes of mild exercises per week, avoiding upright posture (swimming or recumbent bike are recommended and better tolerated) and exercises performed lying on the left side to minimize compression of the vena cava. Oral hydration of 2 l of water daily as well as increased salt intake of 3 - 5 gm sodium per day except if hypertension is present or pregnancy is high risk for hypertension. Compression garments can be helpful and are covered by most insurance plans with a prescription. There are also compression stockings specifically designed for use during pregnancy. Medications during pregnancy Whenever possible patients have weaned off medications during pregnancy. For patients with debilitating POTS symptoms, particularly patients with recurring syncope, medications can be safely prescribed. (Ruzieh, Grubb, December 2018) Some of the more commonly prescribed are ( not limited to 😞 Midodrine - trialed in pregnant patients with POTS with no adverse maternal or fetal outcome (Kanjwal et al., 2009: Glatter et al., 2005) Beta Blockers - such as Propanolol were found to be effective on lessening symptoms without adverse reactions (Raj et al., 2009) Fludrocortisone - used by Kanjwal et al., 2009 in a pregnant patient with POTS with no significant adverse effects. In patients who are not fully helped with the above solutions, Duloxetine and Venlafaxine can be added with particular benefit to patients who suffer from symptoms of fatigue and anxiety. Pyridostigmine may improve tachycardia in POTS patients (Raj et al., 2005; Kanjwal et al., 2011). However, Pyridostigmine also increases bowel motility. Therefore, although it does not have adverse reactions specific to pregnancy, it is not tolerated in many patients due to multiple GI side effects (Kanjwal et al., 2011) IV fluids - infusing 1 L of normal saline over 1-2 hours weekly may be helpful in refractory cases. It can then be increased or decreased on an individual basis as needed. If IV Fluids are used, it is recommended that it be done on an outpatient basis and to minimize the risk of infections and thrombosis, the use of central lines and infusion ports should be avoided. (Ruzieh, Grubb, December 2018) Bedrest - partial bedrest may be recommended in patients with recurring syncope or falls. Intrapartum There are no special considerations for vaginal delivery vs C-section. Both can be carried out successfully without complications. The choice for what is used should be made solely based on obstetrics. (Glatter et al., 2005; Powless et al., 2010; Blitshteyn et al., 2012; Lide, Haeri 2015) No evidence was found to favor one method or type of anesthesia used - regional vs general vs none. Also, an epidural injection was found to be safe and didn’t trigger POTS symptoms. The birth method or anesthesia used should not be influenced by a POTS diagnosis. It should be solely based on Obstetrician’s recommendations. (Corbett et al., 2006) Postpartum Some women experience worsening of symptoms and others find rapid improvement of symptoms after delivery but the majority of women remain stable. Breastfeeding is safe and encouraged, however, caution should be taken if medications are being used to treat POTS symptoms during pregnancy and potentially transfer to breast milk. (Bernal et al., 2016) Conclusion According to current research, there is no long term impact of pregnancy on POTS and POTS does not pose an increased risk for pregnancy or birth. HUTT testing is safe during pregnancy. It is recommended that patients with debilitating POTS symptoms consult with a high-risk obstetrician, and any obstetrician treating a POTS patient should take the time to learn about POTS and dysautonomia in general as well as the medications used to treat it. Special note for POTS patients with EDS: Pregnant women living with EDS and POTS are at a higher risk for maternal and fetal complications. Therefore these patients require more monitoring and closer follow up (Jones, Ng 208; Sorokin et al., 1994) For help in gathering or printing materials for your obstetrician, please contact webmaster@dinet.org Resources Ruzieh Mohammed, Grubb Blair P., Overview of the management of Postural Orthostatic Tachycardia Syndrome in pregnant patients, Autonomic Neuroscience, Vol 215, Full Text https://www.sciencedirect.com/science/article/pii/S1566070217303442
  19. I agree with what @yogini said - POTS in itself does not put you at and increased risk for blood clots and most people have anatomically healthy hearts. I have severe POTS with syncope and seizures due to vasoconstriction but my heart and blood vessels are healthy, no clots or plaques or increased risk of stroke or PE. So - despite the post that worries you there is no evidence of that to be true.
  20. @Potsies - you do not have to have a change in BP to have POTS. Actually they say an increase in HR of 30 bpm WITHOUT a drop in BP is indicative of POTS. Also symptoms longer than 6 months. The fatigue is also the symptom I mind most. And only 30% of people with POTS actually faint. So - yes, it sounds like POTS. Have you had a TTT? -- Most likely you are not that symptomatic because you are still so young and your body has been able to compensate. Have you been increasing salt and fluid intake? Compression stockings? If you have mild symptoms this could help. Good that you are able to walk - exercise is important! But do not overdo it - too much can add to the fatigue. Do you sleep well? Have they checked your Vit D levels? Often in the winter this can be low in many people and can cause fatigue. I was severely deficient in both Vit D and B12 and my symptoms improved with supplementation. I get B12 shots every month. Be sure if they want you to supplement Vit D they order a loading dose - 50,000 units weekly for a few weeks then 2000 units daily. If you do not start with the high dose your levels will not come up.
  21. I had to wait one year for my specialist appointment - and he was worth every waiting second!!! Once you finally talk to someone who understands POTS it is such a relief! After 3 years of wasting my time and energy on uninformed and ignorant cardiologists it was a cure in itself to be heard - and understood - by someone who sees people like us every day. Honestly - who in their right mind would CHOOSE to see dysautonomia patients? --- When my sister - who also has POTS - finally ( and by accident ) found a doctor who knew about POTS ( PCP ) she cried all the way home because it was such a validation. And he has made a huge difference in her treatment. I wish you well and hope you will find some answers!!
  22. @toomanyproblems - my MCV has always been high and I always had anemia. My mother used to make me drink beet juice as a child, it's supposed to be good for anemia. Yuck!! My ferritin lst year was 4 but is now up to 21 with iron supplements. @KiminOrlando - I am trying to find this article I read years ago about how the "thick blood" can cause vasoconstriction because it makes the brain think we are bleeding out, so it clamps down the blood vessels. Could be an explanation but I will keep looking for the article and post it for you.
  23. @AngieP my cardiologist had me on a nitropatch, which did help and did not drop my BP. I also have the sublingual pills for emergencies but never had to use them. Since the IV fluids I no longer need the patch since my chest pain is gone ( unless I overdo it ). The patch is great sine it puts the same amount of medicine out and there are no ups and downs.
  24. My MCV is above 101. Not sure what my sisters is but she says hers is elevated also. I have been treated for low B12 for years with IM supplementation of Vit B12 and my recent check showed normal B12 levels, so that cannot be it. My Ferritin was low at 4 but with oral iron it came up to 21. The fact that we both have this anomaly in our CBC nd we both have hyper-POTS makes me wonder if it could be related?
  25. Hey @Derek1987 - if you have problems with vasodilation then yes - dilators are not for you. Exactly that would be the reason to see an autonomic specialist ( like i.e. Vanderbilt ) - to pinpoint the mechanism that your ANS is malfunctioning. The mechanisms for POTS are very different, therefore the treatment also is quite individual. In my case finding out that I had hyperadrenergic POTS narrowed down the med options - as well as it explained a lot of my symptoms. But I had to go to a specialist to find these answers.
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