Jump to content

Pistol

Moderator
  • Posts

    3,725
  • Joined

  • Last visited

Everything posted by Pistol

  1. 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
  2. @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.
  3. 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!!
  4. @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.
  5. @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.
  6. 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?
  7. 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.
  8. So - I made an observation and am hoping someone could share some info on this. Hyperadrenergic POTS affects most females in my family. Recently I spent time with my sister and we found out that we both have large red blood cells. This means the red blood cell count is low but the cells are too large, therefore they can mimick low blood volume. In the CBC it shows high MCV and MCHC. We both had this - as well as anemia - since childhood. I have found great improvement from IV fluid therapy and wonder if this could be the reason - that it somehow has something to do with the large blood cells? I have read somewhere once in an article that abnormalities in CBC are a underlying cause so I find this very interesting. Any input????
  9. Hi @Derek1987 - when I started Carvelidol I had to keep increasing the dosage to get my HR under control. To address the high BP we added Diltiazem which regulates BP by dilating the blood vessels. Those two together have been very helpful for me and mt sisters as well, who have the same type of POTS as me.
  10. I make these too, I have mini-loaf pans and they are sooo delicious and easy to freeze!!! I hve a recipe that used oats instead of breadcrumbs and I add flax seed to it as well. And chopped kale - yummy AND healthy!!!!! They come out really moist due to the kale.
  11. Oh - gardening is my passion but since POTS I have to let my hubby do all the hard stuff. We grow a large veggie garden but my special place are my flower gardens and - especially - my herb garden. I specialize in culinary and medicinal herbs and flowers. During the winter my blooming orchids keep me busy. Plants are so rewarding, don't you think? -- Have you ever made your own wine? We used to pick wild fox grapes and made many gallons of wine ( also a rewarding hobby!!! ). Enjoy your grapes!!!!!
  12. @AngieP - the chest pin that I get from POTS at times can be severe. My cardiologist did a heart cath last year and found out that I have Prinz-Metal-angina ( chect pain caused by spasms of the coronary arteries ). I also have Raynauds which is spasms in the peripheral blood vessels and is the same mechanism. So this is all from hyper-POTS since the elevated adrenaline causes vasoconstriction. I have heard that other types of POTS cause chest pain due to a change in circulation to the heart. I also notice that my chest pin comes on strong with high BP. I have not noticed that, when I was still working they would come from being upright or active too long. Now - since I get weekly IV fluids and am much, much improved - I can pretty much stop them by lying down and prevent them by having a finetuned balance of activity and rest, this helps tremendous. I try not to even give the ANS the chance to go in overdrive.
  13. GREAT vines! You made my day by anticipating spring planting season - nothing better than that! Your vines yield a nice harvest!!!
  14. I write all of my symptoms down so I don't forget to mention any and I write down all questions I have. And I don't leave the office until everything has been addressed. Sometimes I warn the doc that I have a lot of questions so that they do not get stuck on any particular subject and waste time.
  15. @aelizabeth3300 - I have hyperPOTS and what helped me with the attacks when I was still working was retreating to a dark, quiet room and lying or sitting down and doing deep breathing. That was the only way I was - sometimes - able to stop the episodes and to prevent syncope or seizures ( an extreme reaction to adrenaline rush ). Also - in addition to cardiac meds - Lexapro helped. I have a sister that also has hyperPOTS and she does well on Wellbutrin.
  16. I was called once and told them that I am housebound due to chronic illness and that was all I had to do.
  17. Hi @gossamer4448 - hyper-POTS is diagnosed by symptoms and neurotransmitters ( resting and active, anything above 600 is considered abnormal ). The symptoms differ from other types of POTS due to the BP elevation, mostly diastolic hypertension ( the lower number is elevated as well as the upper number, i.e. 150/100 ). Typical symptoms are tachycardia, tremors, chest pain, cold hands and feet, brain fog and even confusion, cognitive issues, often headaches, in some cases fainting. A hyperadrenergic storm in my case presents with excitement and nervousness, shaking uncontrollably, blue lips, cold hands and feet, inability to find words or speak, extreme chest pain and hypertension. Often it ends in syncope or an autonomic seizure. Imagine if you are racing to get someone out of a burning building and your adrenaline is in overdrive. Then - when the fire is put out and all is over - you are sitting down and all that excess adrenaline is still in your system and you start shaking as if you are going into shock - that is what it is like. Fight-or-flight response - there just is no burning building, no cougar threatening you, no gun held to your head. Just a normal moment in every day life and this can happen.
  18. @Meemee - have you taken your BP when you feel like that? It sounds like it could be your BP dropping. I too reach my limit around 7 pm every evening and often go to bed at that time.
  19. This may be due to Klonopin but I would like to add that I have hyper-POTS and in times when my adrenaline levels are out-of-whack and I am constantly in overdrive I also experience episodes of irritability and agitation. This also happens after I had a seizure or faint - I was told this is a symptom of cerebral hypoperfusion ( not enough blood flowing to the brain ). I am not sure if this is the case for you but wanted to mention it.
  20. When I was the most unstable I also could not sleep more than 3 hours in a stretch b/c the adrenaline level did not go down to cause REM sleep. Once I found a more balanced way of life through meds, exercise and rest periods I now sleep well most nights. The nights I do not sleep well - mostly due to overdoing things during the day - I use Benadryl or Ativan and this seems to help well. You mentioned in another post that you are mostly bedridden - core exercises before bed ( lying down ) help really well, also leg exercises. They also help with training the larger muscles necessary to help balancing the cardio-vascular system. Bedrest will make EVERYTHING worse, including the ability to find restful sleep.
  21. Unfortunately the temperature intolerance is one of my biggest problems. In the winter I cannot go for walks b/c of the cold which triggers my symptoms, and in the summer it is the same with the heat. So I stay mostly indoors in the extreme temps and exercise there but in spring and fall I start to walk outdoors daily, every day a little more. I also are unable to sweat ( which makes hot flashes - I am of that age - unbearable ). I constantly put on or take off my clothes as well and use cooling itmes in the summer. I find fans very effective.
  22. @Derek1987 - I was exactly in your shoes. When I realized that my condition is genetic, chronic and progressive and I became disabled I thought my life was over. However - with the help of my extraordinary PCP as well as my superb autonomic specialist I am now capable of a much better way of life DESPITE my illness. But it took many years of fighting, trying different meds and learning how to know my limitations and to live within them. Once you no longer have to work and push yourself every day you can learn what your limits are and then somewhat train yourself to coax the most out of them. Also - there are many medications that help but you have to find the right ones. In my case that meant going through a lot of trial and error - but it was necessary to find what makes me better today. You are still just in the baby-years and there is no reason to think that you re done. But you cannot give up and stay in one place. We have to move, in however small increments, and keep being active. What you find unreachable today may very well be your worst in the future. At least that was the case for me. Before giving up I would go to Vanderbilt since you live in TN and since they know a lot more about your illness and your options. You might be surprised what you can do with the right treatment. BTW - I also have the form of POTS your psychiatrist is referring to and I have come a long way. Hopefully you will too.
  23. Throughout the years of dealing with POTS I have noticed that MOST cardiologists and EP's do not want to deal with POTS. They would have to re-think their whole way of approaching their field of expertise. Out of 5 cardiologists I only found one that was willing to acknowledge that I have POTS ( this was prior to diagnosis ) and he admitted that he did not know how to treat it. After diagnosis by a renowned autonomic specialist I had to find a local cardiologist as well and went back to him and he has been very willing to educate himself and work with my specialist. He actually sees other POTS patients now - I hope he will decide to specialize in that field. He is very good. He also told me that at most cardiology seminars the docs tune out and even leave the room when POTS is brought up - they do not want to touch it. That is why I believe the cardiologist you saw told you what HE believes is true - that there is no cure and you have to "just deal with it". That is untrue. There are many meds as well as other treatments that can help - but it is a long road to finetune the correct meds, since there is no one-fits-all treatment. It is frustrating for both physicians as well as patients and most docs will not touch us for that reason. So - keep looking. I was fortunate to have an extremely compassionate and good PCP who stood by me when the cardiologists sent me away. You just need ONE good one to make it through this ordeal - so keep looking!!!!
  24. @Stark - I was tested for MCAS and was negative. I was told the runny nose stems from the ANS being stimulated.
  25. @StayAtHomeMom - to answer your question: yes, every one affected has hyper-POTS with syncope and BP fluctuations up to hypertensive crisis. I am the only one that takes seizures from the high BP. We all are taking the same meds ( Carvelidol and diltiazem ) for BP but I take a lot of other POTS meds as well. My nieces ( between 20 and 29 ) do not yet have the severe hypertension but they have the syncope, fatigue, orthostatic intolerance etc. They all started in their teens, as did I. Also - my mother and sisters became severely symptomatic in their early 50´s and I at 42. It seems to be tolrable until then, not sure why. In my case it was not related to menopause but with the others it could be. We are all unable to work witout restrictions ( I am disabled ) and we all are very much limited in what we are able to do in a day. I have 2 brothers and 2 nephews, neither of them have it, seems to only affect the females.
×
×
  • Create New...