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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. Pistol

    Sensory Overload with Pots/Dysautonomia

    @Billie Gene - I am not so sure that your scenario is due to sensory overload, which means the normal senses ( hearing, vision, taste, feeling etc ) stimulates your nervous system too much, to where you develop unwanted physical symptoms from it. What you are describing seems to be more of a "sixth sense" sensation, which is not really called an overload.
  2. @Faustus - google IV saline therapy for POTS. There are several articles about it that you can share with your cardiologist recommending this treatment for refractory POTS. also check on Dysautonomia information network , they have an exceelent article by Dr Blair Grubb. I always share articles with my docs - I have the time to research, they do not. that has helped me with getting several treatments.
  3. I had my catecholamines taken early on ( after just 2 years ). They took them after reclined in a chair for 30 minutes and then I had to walk for 30 minutes around the hospital. Then they took it again. I was elevated reclined ( above 600 ) and walking ( almost 900 ). But at that time I was not symptomatic - who knows how high it would have been when I was having symptoms!!!! My specialist says some people go up to 2000!!!!!!
  4. Pistol

    Winter Blues

    @green - yes, seasonal changes always cause my symptoms to worsen. In my case spring is the worst. In the winter I do OK as long as I am inside but when I go outside for just a short time that is when I feel it. It takes a while to come back to normal. And I also feel sluggish during those times. It has been mentioned that barometric pressure has a direct impact on our cardiovascular system, I also notice sudden changes right before a thunderstorm hits.
  5. @DAB19 - the stronger heart beat after eating is most likely due to the increased circulation sent to digestive tract. I also experience the strong beats rather than fast beats since on medication and - although concerning - they are harmless. I too can see my pulse in my abdomen when lying down and had this all of my life. @Samy - this was very much noticeable when I was skinny and the docs also told me it was only from being skinny. So DAB19 - I would not be too worried about it , especially since you had a CT scan recently. It would have shown any abnormality that is serious.
  6. Hi @Faustus - welcome to the forum. Yes - I too get severe chest pains, unfortunately this is not uncommon for POTS. It has to do with tachycardia and circulation changes to the heart. I used to think that I have a heart attack too, especially since the pain radiated up my neck and down my arm. Most often I also have high BP with the CP. Beta blockers and calcium channel blockers have helped. But - to make sure that this is just POTS related CP you should see a cardiologist. If EKG and cardiac enzymes are normal you should have a stress test to be sure. I had several stress tests over the years and finally had a heart cath in January that showed no blockages but angina. So - now when I get CP I can be sure that it is not a heart attack. I have also found that IV fluids get rid of the CP in my case, and when my symptoms are controlled I do not have the pain. So - please do not dismiss the co until you are thoroughly checked by your cardiologist. Best wishes!
  7. I am confused - I was always told to elevate the TOP of my bed for GERD symptoms and the BOTTOM of my bed for POTS related cerebral hypoperfusion … so I just did not ever elevate anything. You guys are saying you elevate the TOP of the bed for POTS?
  8. Pistol


    @dogmom - welcome to the forum and I am sorry you are having all of these problems! I too have NCS and POTS and also used to faint frequently. I lost my job and am now disabled. What I recognize in your post is that your symptoms are very similar to mine. Regarding the flare: as you may know OI and fatigue will get worse with bedrest, so despite how bad it makes you feel you must make yourself sit up and even stand up frequently, even if it feels terrible. Also leg exercises are essential. And when I get as bad as you I ALWAYS go for IV fluids. If your doc has not yet tried them on you I highly recommend you go to a clinic or ED to have IV fluids delivered, ! l over 4 hours at least. This helps for both HR, BP and fatigue. And once the VS are controlled you can start getting up and that will in turn improve your orthostatic symptoms and fatigue. If your benefits run put soon I would see your PCP or cardiologist ASAP and have them review your symptoms, that way they can give you treatment recommendations and you may be able to get 3 month supply of meds before the insurance ends. That is what my PCP did for me when I first had to stop working and lost my benefits. --- Best of luck!
  9. @Scout - that is sure difficult to deal with. I also seek treatment proactively due to severe seizures from untreated flares, so the ER used to see me frequently and some staff treated me like an attention seeker. Thank god I have a great PCP who understands my symptoms and will fight for me when needed. --- I have a husband and he is always home and drives me to all my appointments, does the shopping and takes over transporting my teenage daughter. However - if they go away for several days I am also home alone and we live 1 hour away from any hospital. So I have a medical alert system for those cases. They know all of my medical info, numbers to close by neighbors and can alert 911 when needed. It is a a button I wear and can push for help in case of an emergency or if I just need someone to come over they will notify my neighbors. And if I am unable to answer they call 911. This is a great relief for me and my family knowing that in case of an emergency I do not have to get to the phone. we all know how difficult it is to explain our situation when we are sick!!! - I also wear a ID bracelet that says : POTS, syncope, seizures, give IV fluids on the front and my PCP's name and number on the back. It also alerts first responders to check my wallet for detailed medical info and medication list. This might be something that would work for you? It truly helps with the anxiety when I am home alone. -- Stay strong!
  10. Pistol

    Tachycardia vs palpitations

    When I get tachycardia I get also chest pain as well as nervousness. Palpitations ( in my case PVC's and PAC's ) cause a definite "jumping" sensation in my chest, not a pain. Cardiac awareness is a symptom of POTS - because we have so many weird symptoms that are caused by our heart rate / BP we are very sensitive to it. My specialist always told me that the palpitations are a sign of the ANS becoming hyper-sensitive.
  11. Pistol

    Symptom flares - Then anxiety!

    @jklass44 - it depends in my case. If the seizure is a new thing for you it can mean that your dysautonomia is getting worse and you need to have your meds reviewed. In my case the seizures are "normal" finding with a flare and yes - I do ride it out (or get fluids and be done with the flare). But any new symptom alerts my docs to revisit my case and my treatments to fnd not only a potential cause for the flare but also if a change in meds may be indicated. I have found that this has shown a lot of benefit in determining what meds are essential and what meds may need to be tweaked a bit.
  12. Pistol

    Root Canal

    @Amy_ - a root canal is a painful and scary procedure, therefore it could theoretically cause a flare due to the release of norepinephrine. Also any infection can cause POTS to act up.
  13. @blizzard2014 - 120/100 at rest is still pretty high to go untreated. You might want to check with your doc and he might want you to go back on some of your meds.
  14. Pistol

    Symptom flares - Then anxiety!

    I am sorry @jklass44 - but I do know what you are going through. I too take seizures when I get hypertensive from POTS and I also - of course!!!! - get anxious as soon as I feel a flare coming on. And yes - if it gets out of hand I have to go to ER and the same story as yours: it's either I am told I have a panic attack or I have even been told that I am faking it! There were times they even refused to give me IV fluids - despite the fact that I just had a seizure with soaring HR and BP in the ER!!! For the last several years my frustrated PCP just admitted me to the hospital for Observation and after 24 hours of fluids I walk out brand new. Until this summer when one hospitalist refused to admit me for fluids because "I can drink"!!!!! He said that IV fluids are just a placebo effect and POTS patients have to learn to hydrate better to avoid flares. ( Of course this hospitalist was young and felt he knew all there is to know - yet was not even educated on hyperadrenergic POTS!! Had no clue!!! ). So now I have a port, get home infusions weekly and prn for flares and have not only avoided hospitalizations or ER visits since then but also have drastic improvement in my day-to-day abilities. --- My cardiologist tells me that it is still very difficult to get MD's to accept POTS. When he goes to conferences and the subject of POTS comes up they all tune out, start talking or leave the room - they just don't want to hear about it. In my opinion that is because the concept of dysautonomia and it's cardio-vascular effects require them to throw out a lot of their theories and change their approach to medicine. THAT of course is too much for them to wrap their head around - aren't they the almighty and all-knowing cardiologists? Is it not the doing of the patient when he/she does not respond to their treatment recommendations? Fluids, salt, compression, betablockers … if that is not enough then the patient is either not compliant or ii is anxiety. --- As you see - we are in the same boat. Do you have a specialist that can review your meds? Have you ever tried IV fluids for your symptoms? It brings my BP and HR down immediately and chest pain, cold hands and feet etc disappear. Also - you could ask your specialist to write a letter which you can carry with you that explains your condition and treatment recommendations. That way you have something to give to the ER when you are too ill to fight with them. Best of luck - stay strong!
  15. Great news, @Andy T! I also am experiencing only positive results from my IV fluids. The energy I have and the good numbers far outweigh the risks (I have a port). Wish more docs would listen to their patients and observe the actual benefits from this therapy!!!!