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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. Dear @Scout - I get these as well. I do take autonomic seizures that look like grand mal seizures, but I also have these "staring episodes" that you describe. I know that before a seizure I have this sensation of almost "being outside of my body" and I can't move and hear and see differently. People tell me that I have a blank stare and turn ashen, with blue or white lips, right before a seizure. But I have also had these spells without developing a full-fledged seizure, and those seem to last a few minutes. I was told that this is all due to a loss of circulation to the brain caused by excessive vasoconstriction. In my case this is due to a sudden and severe adrenaline dump. --- I also have vasovagal syncope in addition to HPOTS, and the syncopal episodes caused by that are completely different, with different warning signs before, and I usually only get a few seconds before going completely lights-out. I am sorry that you are dealing with this now, during such a trying time. I assume the stress and unavoidable anxiety from the current crisis will add to our symptoms and can cause a flare. Personally I would call the physician that treats your POTS and inform him/her of these events, he may suggest medications to help stabilize your ANS and help with the pre-syncopal symptoms. For me what always helps are IV fluids. I get them scheduled 3 times a week at home but used to have to go to hospital for them when the seizures and syncopal episodes became too frequent. This would ALWAYS stop them for a while. But I also realize that that may not be possible right now with the crisis. But maybe worth mentioning to your docs that it helps others with the same conditions. I am not sure if this is even accepted in your country. Scout, I wish you the best and send you strength and support in dealing with this frightening part of POTS. Just know that you are not alone and I am here if you need support or have questions. Just PM me if you need help. Be well 😉😘
  2. Dear @KaciCrochets - I also had a catecholamine blood test do confirm my HPOTS diagnosis. My levels were elevated both resting and upright, however my specialist states that it is unusual to also have resting upright levels. The whole reason why they elevate is the act of standing up. Here are the references for catecholamines in the diagnosis for HPOTS per Mayo clinic: According to this if your levels are elevated upright you are positive for HPOTS. The test measures catecholamines by picogram per milliliter (pg/mL); a picogram is one-trillionth of a gram. The Mayo Clinic lists the following as normal adult levels of catecholamines: norepinephrine lying down: 70–750 pg/mL standing: 200–1,700 pg/mL epinephrine lying down: undetectable up to 110 pg/mL standing: undetectable up to 140 pg/mL dopamine less than 30 pg/mL with no change in posture
  3. @Nin - to clarify my message: my autonomic specialist understands these seizures and sees them at times in his autonomic clinic. But even after HE diagnosed me with HPOTS as the reason for these seizures - other physicians such as cardiologists or ER doctors have never heard of them. If you find a knowledgeable specialist ( I am not sure what country you reside in but there are a few good ones internationally ) he/she would be familiar with these and should be able to have treatment suggestions. Having said that - treatment for HPOTS is usually hit-and-miss, more of a " try and rule out " concept that can take a long time. As to the Ivabradine - try it and see. I had to kiss a lot of frogs before we found the right meds.
  4. @Nin - I too have seizures from HPOTS, this was even caught on long-term EEG at an epilepsy monitoring unit by a neurologist. HR and BP go up ( due to sympathetic overcompensation causing sudden and severe vasodilation ) and in about 2-3 seconds I have what looks like a grand mal seizure. this is due to complete loss of circulation to the brain. I used to get them really often but since proper treatment, especially frequent scheduled Saline infusions, I barely get them any longer. Some docs call them convulsive syncope, others call it anoxic seizures or autonomic reflex seizures. For a while I took seizure meds, before they diagnosed them as autonomic seizures, but - of course - they did nothing. And yes - the vast majority of physicians do not know about them. Even after diagnosis by the most renowned dysautonomia specialist in the US docs look at me as if I am a space monkey - they have never heard of such a thing. And when they witness them they just shake their heads in utter disbelief. --- I am sorry you also are experiencing them but I found great relief once I met others that have them. It made me feel less of a freak!!!! I hope your doctors will educate themselves and find the right treatment for you 😉
  5. So, with social distancing we now have a very accurate way to explain what POTS is like to people who have no clue: - we cannot leave the house, unless it is for necessary things such as food or doctors. - we cannot exercise unless it is something we can do in our home. - we often need to retreat to a quiet room to calm down ( due to simple things as conversations or other "stimulating" activities ). - dealing with the family can be overwhelming and stressful ( sad to say but true ). - there is only so much we can do to combat inactivity and boredom. - it is easy to become irritated at simple things and lash out at others - monopoly can cause our BP to spike What other examples have you encountered?
  6. @Derek1987 - here is an excellent article that explains adrenaline rushes, what causes them and what they do to our bodies. It explains the shaking you experience as well. https://www.medicalnewstoday.com/articles/322490#takeaway I feel awful that you saw psychiatrists that were assuming and judgmental. Of all people - the mental health community should be aware not to be like that!!!!! But at least now you are in good hands with your current psychiatrist!!! Kim - I too suffer from HPOTS and frequent sympathetic overcompensation ( adrenaline rush ). I have learned the hard way that once it starts there is no turning it around, at least it is very difficult for me. What DOES help for me is avoiding the triggers. I do not expose myself to stimulating environments ( I am house bound, so that is easy to say ), take frequent rest periods ( for example for every 5 minutes of activity I take 5 minutes of rest ) and even treat movies or phone calls as activities requiring rest. In my case if I let things go too long I experience such severe adrenaline rushes that I take seizures from them, although I hardly get them anymore, thanks to medication, IV fluids and avoidance of triggers. Deep breathing and rest in a dark, silent room can at times help to calm down the oncoming rush but rarely for me. BTW - caffeine helps me as well, due to its vaso-dilatory effects. And it too puts me to sleep!!!!!!
  7. @Derek1987 - I have HPOTS and am very aware of this scenario. Loud rock music is extremely stimulating, it in itself can cause an adrenaline surge. The sweaty hands indicate onset of fight-or-flight and the cold hands are caused by excessive adrenaline in your body causing the blood vessels to constrict. this can cause decreased blood flow to your brain with pre-syncope, which in my own case frequently leads to syncope or seizures. --- I used to get these symptoms at work, after standing a long time and getting stressed, I would pass out or seize at work a lot. That of course led to me no longer being able to work. Today I avoid all stimulating activities including loud music in order to cope with my illness. Extended periods of standing or walking, loud noise environments ( sometimes even bird song puts me over the edge and sometimes I have to wear ear plugs in the summer ) and long phone conversations or even movies are too much for me. I know that is a very frustrating reality b/c it does not allow for you to do things that you normally enjoy. But that is the trick with dysautonomia - we have to alter our entire life to accommodate our limitations. I personally would avoid listening to the music that loud since it will trigger you again. Try just one song at a much lower volume next time and rest after, even without symptoms. I am sorry!!!!! Why why why? - Because you have POTS and as harsh as this sounds, we have to create a new life around this reality. I used to be very depressed knowing that most of what I enjoy I can no longer do. But today I have learned what my triggers are and am at peace in avoiding them - they would just make me sick and the thought of having to recondition each time is enough of a push to avoid them at all costs. There are many other things you can do that are enjoyable without making you ill. You just have to find them and let go of the old ones.
  8. Hello @sue1234 - I am glad you are doing well. We are fine where I live, in WV. We were the last state in the US to have positive tests, and so far we have 9 people testing positive, all in cities near other states and all contracted after traveling to other states. Our schools, churches and other businesses are closed, no gatherings and restaurants only serve take-out. Everyone stays in the house - I am glad for this. We are a state with a large senior population and some areas, so I am glad we can protect them by taking precautions serious. - We have a 15 year old daughter and she is kept busy with all of her school work. We now follow a routine to incorporate school time and rest time into our day. It is rather fun!!! I hope everyone stays healthy and is careful. No doubt this will be over some time and we can all come out of our cocoons!!!
  9. @Nin here is an article that explains vasoconstriction and dilation in detail: A bath would trigger vasodilation - relaxing of the blood vessels which causes a drop in BP. I take seizures, but mine are usually caused by vasoconstriction. But both excessive vasodilation and vasoconstriction can cause reduced blood flow to the brain, which can result in seizures. If your BP drops after a bath and you push yourself to keep going the ANS sometimes will release too much adrenaline which will cause the blood vessels to constrict. In my case - and maybe yours - if this happens too fast it causes a seizure b/c no blood goes to the brain ( imagine a kinked hose - nothing goes through ).
  10. I was on Midodrine once, many years ago. I was instructed to take it in the morning and no later than 3 pm. I believe that Midodrine is short-acting b/c it only stays in your body for a short time. I personally think it totally could be taken on an as-needed basis.
  11. This article is great and will help ease many worries felt by a lot of Dys patients. Please forward our thanks to Dr Rowe for taking the time to address concerns unique to the dysautonomia population !
  12. @Eraena I also sweat very little and am prone to overheating easily and am extremely exercise intolerant. What I tolerate best of all exercises is my rowing machine. It has 8 settings and depending on my day I can turn it up or down. Even on the lowest setting it uses muscles of arms, legs, core and buttocks. It CAN increase my HR I but most of the time I stop right before that. I can do 30 rows three times a day on setting 3 when I feel good or 10 rows on setting 1 or 2 twice a day on less good days. On really bad days I don't do it at all. I purchased it on Amazon and it was not expensive, to me it is very helpful.
  13. My strategy for social distancing is to stay in touch via social media like facetime or skype, or by phone, with my friends and family. My strategies for coping with the stress of coping with poorly understood health issues is RESEARCH and sharing experiences with others.
  14. @Scout - I do not know anything about psychiatric meds and dys, but whenever a physician orders a new med that could affect my POTS I clear it with either my autonomic specialist, my PCP or I ask the pharmacist at my pharmacy. It is always scary to try new meds when we are so hypersensitive to changes, but I have learned that if we don't try we cannot improve. Even if that means to find out that we did NOT tolerate a med. Since - as you said - the schizoaffective disorder causes you distress, just as the POTS - I would weigh the risks and benefits and decide what is worse: to go on like this or to try a new med with the risk of experiencing side effects ( that most likely would be temporary ). I also would ask if this med needs to be tapered off ( if you need to stop it ) or if it can just be stopped. Also - your psychiatrist should be able to find all of this out, he is still a medical doctor and is responsible for what he prescribes. I am sorry you are going through this when you already have your trials from POTS. I hope you get better and that - if you try the med - it helps to give you some peace of mind. Be strong!!!
  15. I don't believe so. Here is an article about complications from high salt diet ( keep in mind that most POTS patients NEED more salt, so this article may not apply to many ). https://www.hsph.harvard.edu/nutritionsource/salt-and-sodium/#ref5
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