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Pistol

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About Pistol

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    Female
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    gardening, my family, reading

    " And I think to myself - what a wonderful world!"
    Louis Armstrong

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  1. Well - I am considered fully disabled, so I am homebound. But with help of meds and IV fluids ( I have a port and get fluids when I need them ) I have been able to avoid seizures and syncope ( which I used to have all of the time ). I can pretty much take care of our household chores but my husband does all of the driving and shopping. When I have a good week I can garden ( my passion! ). Compared to what my life used to look like I consider myself lucky, and I feel pretty independent. Regarding sleep - insomnia is a typical problem of POTS and it is hard to get ahold of as long as the P
  2. @Glassywood - welcome to this forum, and I am so sorry you are dealing with all of this!!! I too have similar symptoms as you - IC. IBS, arthritis and NCS ( neurocardiogenic syncope, same as vasovagal syncope ). as well as HPOTS. I am 54 and started getting severely ill when I was 42. --- I understand your issues with anxiety, and when I was at my worst I too dealt with that. I found relief when i became disabled and could avoid pushing myself. I now lie down to rest both to prevent symptoms as well as to stop them. I find that resting a lot and doing certain exercises ( I have a rowing machin
  3. @peachychou123 - Oh my, what a scary disaster! I feel for you, although it was a bad idea to attempt the walk I can see that staying in that car was an equally bad idea!!!! -- I have been in similar situations where I had to willingly make a bad choice and pay for it with weeks of bedrest. I am glad you made it home OK and that you can find the necessary time t rest and slowly recondition. One word of wisdom: if you are discharged from the ER but still find yourself as unstable as you were ( and a BP of 130/118 whilst being symptomatic is NOT NORMAL ) then going back would be the thing t
  4. Hello @EH89, and welcome to this forum! -- I have HPOTS, and had it since childhood. I was diagnosed in 2012, and my symptoms started after child birth. I suddenly became so hyper, tired all the time, and i also developed joint pains. It very well could be a flare due to the changes your body went through after giving birth, and it is possible that it will improve. Many women do get better. For me that was not the case, and I became chronically ill. My first thought also went to Sjogrens. Have you seen a rheumatologist? There are specific tests for Sjogrens. I was tested for autoimmun
  5. @Ashc - I use it also to apply a warm wet compress to sore joints, or after an injury like a sprain. I have a bum knee that swells and hurts at times. I apply a compress and then rub it with Arnica oil. It really helps! Also - another short cut I use when I am too ill and cannot tolerate a shower or bath: I wash only my hair under the tub faucet and do a "bucket bath" in the shower. This way I clean up without having to stand or being submerged in water. And it is quick!
  6. @CallieAndToby22 - I had to stop my meds 3 days before my TTT. Granted - I was not on many meds back then but it still got me sick as a dog without them. I am not sure if I could do that today - I am on a lot of meds that should not be stopped abruptly. Not sure about yours.
  7. @CallieAndToby22 - has your urologist ever considered an indwelling urinary catheter to help with your symptoms?
  8. @p8d - yes, I flare very much if I spend too much time in the sun. I have not yet figured out why. It is not even just heat, since I get it when out in the sun on cool days. I read somewhere that sunlight triggers the ANS by dilating the pupils in reaction to the bright light. I can be out doing something in the garden feeling just fine but from one second to the other I am floored ( literally! ). It always takes me a few days or longer to get better. --- I also have been experiencing more joint pains with the weather change, but I am on Plaquenil now and it's not as bad as before. Hope you g
  9. I sleep 7-8 hours a night. I did not used to ( hyperadrenergic POTS causes too much adrenaline, so we are pumped up 24/7 ) but since pretty well stabilized on meds sleep is no longer an issue, unless I am recovering from a flare.
  10. @aec8857 - I have a port for IV fluids and keep it accessed Monday through Friday ( remove it Saturday to prevent break-out from the dressing that i am allergic to ). If I wear a top that shows any part of the dressing I usually cover it with a scarf. This is not because I feel self-conscious but rather to avoid questions. People have asked me why I have a port and if I try to explain what POTS is and why the fluids help it's just too much effort for me. I also might wear a t-shirt or undershirt that cover it.
  11. @Sarah Tee a syndrome is a group of symptoms that occur together and don;t otherwise have a name. POTS is a group of symptoms that mostly shares postural orthostatic tachycardia but has many other symptoms that do not necessarily occur in all patients with that syndrome.
  12. I bet the Diltiazem helps! I started out on 30 mg 2xday and gradually increased to the extended release 240 mg. In the summer I go down to 180 mg b/c the heat causes my BP to drop.
  13. @CallieAndToby22 - ๐Ÿงก๐Ÿ˜˜๐Ÿฅฐ๐Ÿ˜๐Ÿ‘ !!!
  14. @Ashc - yep, not all plants are equal! I have an orchid that I used to just water every 2 days and sat it in a corner. It never did nothing and I was ready to throw it out but saw one little bud on it. My daughter got me a book on orchids, I read up on it, repotted it in proper soil and a bigger pot and changed location away from drafts and into more light. Tada - she has not stopped blooming since and currently has 38 ( !!!!!! ) beautiful flowers on it. ANYONE can be a successful gardener if the research is done and we don;t get plants that don't thrive in the environment we can provide. Ther
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