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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 - I have hyperadrenergic POTS with fluctuating BP's. 4 weeks ago I developed severe pain in my neck and down my arm and was diagnosed with a pinched nerve ( C7 ). Anti-inflammatories, heat and PT have not been successful. My doc will most-likely advance to MRI and pain medication ( I cannot take steroids ). In the past certain pain meds such as Lortab etc affected my BP and my POTS symptoms. So my question is: What pain meds have helped you without dropping or raising BP? If I have to decide between pain relief and worsening POTS I will take the pain 😞
  2. @Clueingforlooks - this used to happen to me when they gave me Saline over 2-3 hours. Then we started to run it slower, over 6-8 hours, and the headaches and jitters disappeared. Then we switched to Lactated Ringer solution ( more electrolytes, more volume than Saline ) and it worked better yet. Today the IV fluids are a necessity for me in order to function at all.
  3. @Derek1987 - this happens to me as well, I contribute it to the dilation of the blood vessels as occurs after a hot shower and is what makes us not tolerate it well. The same thing occurs in the legs which turn deep red after a shower.
  4. Hi @Pharmgirl - here is a link to dysautonomia international and the video shows how to properly take orthostatic vital signs ( poor man's tilt )
  5. I am glad you found answers here. I have come to realize that talking to Others that go through the same thing can be more rewarding than the theories and opinions of physicians that are not even sure what it is you have!
  6. Thanks for asking @Scout. Yes, I am better and trying to get back to my normal level of activity. Be well yourself!!!!!
  7. @Scout Prinzmetal angina - for me - is a tight, heavy pain right at the heart and it radiates up my left neck and at times down my left arm. Sometimes it is accompanied by mild shortness of breath. I have Raynauds syndrome in my toes, which means the venes spasm and constrict to where there is no longer any circulation and they turn blue. Prinzmetal is the exact same mechanism, only in the heart. I have an inverted T-wave in my EKG which is chronic but can mean that there is muscle death in the heart, so my cardiologist did a heart cath. That is when he discovered the angina b/c the coronary vessel that the catheter was in spasmed and they could see it. I took a nitro patch for a while but since I started with weekly ( and more if needed ) IV fluids I no longer get the pain and stopped the nitro. That - IMO - is proof that the IV fluids do more for POTS than just hydration ( as so many sceptics believe ). If the increased blood volume from the fluids can prevent excessive vasoconstriction then it is obviously a more complicated matter for POTS sufferers. I have hyperadrenergic POTS which causes excessive vasoconstriction which in turn causes high BP, tachycardia and orthostatic intolerance as well as sooooo many other miserable symptoms, all of which have improved with the fluids. Sorry about the rant but I am just so frustrated about physicians that refuse to even TRY IV fluids for POTS when it is obviously effective.
  8. @judyinthesky I am severely medication sensitive due to POTS, which has made finding the right med difficult. I am under the care of wonderful doctors who work together to minimize my symptoms. Whenever a new med gets introduced they start half the lowest dose - or even the pediatric dose first. Then - depending on my tolerance - they gradually increase. Sometimes this ended up bad ( I thought I was dying on a minimal dose of Clonidine, Benadryl puts me into a coma and any OTC cold medicines drive my heart berserk ). I am blessed to be treated by an experienced autonomic specialist that completely understands my illness and therefore was willing to try different meds on me. I am now on 11 meds for POTS. Some are half the lowest dose, some are the maximum dose ( my beta blocker for example ). ---- Unfortunately treatment of dysautonomic conditions is often hit-and-miss and we have to be brave and try new meds, even if we do not end up tolerating them and they have to be stopped. It is frustrating to both patient and physician and both have to be patient. Also - recently someone posted that there is a test for medication tolerance that can tell which meds not to take, but I do not know about this test. It might be worth asking your doctor about it.
  9. @phillipc421 you do not have to pass out to have NCS or dysautonomia. Feeling as if you are about to pass out ( pre-syncope ) is counted as syncope because it is caused by the failure to adequately circulate the brain due to changes in BP and HR. Here is a very interesting article that might answer some of your questions: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Especially this paragraph caught my interest for you: Symptoms include mental clouding (“brain fog”), blurred or tunneled vision, shortness of breath, palpitation, tremulousness, chest discomfort, headache, lightheadedness and nausea. While pre-syncope is common in these patients, only a minority (~30%) actually pass out. The chest pains are almost never due to coronary artery obstruction, but are sometimes associated with electrocardiographic changes in the inferior leads, particularly when upright [6]. Many patients complain of significant exercise intolerance and extreme fatigue. Even activities of daily living, such as bathing or housework, may greatly exacerbate symptoms with resultant fatigue. This can pose significant limitations on their functional capacity. The disorder primarily affects women of child-bearing age. The female:male ratio is 4:1. The reason for the strong female predominance is not known, but it should be noted that orthostatic tolerance is reduced in normal healthy females [7]. Others disorders such as autoimmune diseases and irritable bowel syndrome are seen commonly in patients with POTS, and also have higher prevalence in women. Patients frequently report that their symptoms began following acute stressors such as pregnancy, major surgery, or a presumed viral illness, but in others cases, symptoms develop more insidiously. About 80% of female patients report an exacerbation of symptoms in the pre-menstrual phase of their ovulatory cycle (unpublished data). Gazit et al. have also reported an association between joint hypermobility and POTS [8]. Many patients have bowel irregularities and have been co-diagnosed with irritable bowel syndrome, and some have abnormalities of sudomotor regulation [9].
  10. @judyinthesky this article touches on many of your questions: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ They specifically mention IBS and medication hypersensitivity. And yes - as far as I have researched trauma of ANY kind ( even hormonal dysruptions such thyroidectomy or surgery in general ) can cause dysautonomia. Remember - dysautonomia is an umbrella term, you do not have to have POTS to have an autonomic imbalance. And medication sensitivity in dysautonomia is often caused because the ANS is not balanced and therefore reacts inappropriately to even the mildest stimuli ( even medications ). Autonomic function testing can often pinpoint the mechanism of a particular autonomic dysfunction. .this article explains this: https://answersdrive.com/what-is-a-autonomic-function-test-7621478 Gastrointestinal problems are very common in dysautonomia. I hope this information is helpful to you. Best wishes!
  11. I read in an article about POTS that chest pains in POTS often are caused by a change in circulation in the chest from vasoconstriction or vasodilation.
  12. Dear @phillipc421 my very first TTT was like yours. All was well until 20 minutes into the test they gave me Nitro, my HR rose and then plummeted and I passed out. They told me NCS, as with you. At that time I passed out frequently. Another TTT a year later was interpreted as normal by that EP ( who was not educated about POTS ) but once my autonomic specialist reviewed the test he said it was clearly POTS ( HR increased over 30 BPM until the end of the test ). I then was diagnosed with hyperadrenergic POTS by blood tests for neurotransmitters. As far as I know the initial treatment for NCS is similar as for POTS: increase oral fluids, increase salt intake and wear compression hose ( this should be purchased through a medical supply center where they can measure your legs in order to give your the right fit for your body type ). In general with dysautonomia ( whether POTS or NCS ) mild aerobic exercises are recommended. Strenous exercises have been found to worsen symptoms. You may want to read this article from our website: Your symptoms could improve by following these simple steps as well as following up regularly with your doctor to go over any changes. Best of luck!
  13. @Scout - yes, I get these sharp pains in the middle of my chest. In my case they have diagnosed them as esophageal spasms, since I do have GERD. I also have Prinzmetal angina, which is a rare condition that causes the coronary blood vessels to constrict. This feels definitely different than the esophageal pain: it is a squeezing, tight pain in my left chest that sometimes radiates into my neck or down my left arm and it can lst quite a while. The esophageal spasms usually only last a few minutes. Since your cardiologists are not concerned about the pain maybe you want to consult a gastroenterologist? Reflux disease can cause this pain aa well as many other unpleasant symptoms and can easily be controlled by medication and diet. Another sign of GERD can be frequent burping, heartburn and bloating.
  14. Dear @Alice Jean - I am so sorry you are going through this! I too became disabled and housebound 6 years ago from hyperadrenergic POTS, after 23 years of being a full-time RN. I often felt - and at times still do - feel useless and depressed. I too need a wheel chair to go shopping or any other events where walking is required, but I mostly don't even go because then I have to rest for a day or two after. As you see - I can relate. However - when I feel low and down like that I list all of the things I still CAN do and all the blessings in my life, such as my family and all the many people that help me in any way. There is still so much to enjoy in life and if I run out of things I can do I create new ones. Before Christmas I was depressed b/c I could not really do any shopping or crafts for gifts. But I found an old book on candle making and bought supplies on amazon and voila - I was able to make beautiful handmade scented candles in all shapes and colors as individualized gifts for the whole family. They loved them and it became a rewarding hobby for me which I enjoy. Today many people bring me their left-over candle stumps and I create new ones for them out of all of the wax. --- Your life may feel like it is over but in reality - it is just not as it was. I have found that we do not have to be upright, healthy, energetic or even particularly creative to make our days worthwhile. My mother always said: " Just because it is cloudy does not mean the sun don't shine"! -- Be well, dear Alice Jean, and best wishes!!!!
  15. dear @Eduardo - please notify your physician of this right away. Some side effects can be transient and normal but others may mean the medication should be changed. Only your prescribing physician would know, please call him or make an appointment
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