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flower

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  1. Mine on average 70 I would say - unless I feel more unwell in which case it is 80 - 90 or more. This all on my bed. Standing it is 120 - 200 + When on beta blockers my heart rate was in 50's on the bed and about 120 standing. My blood pressure was just too low to function though.
  2. (((((( Bren )))))) I am so sorry that happened to you. The other day (well middle of the night) my husband saw me have an episode where all my muscles clamped. He said my hands were spread wide too. My body was twisting up. All I can say is the clamping was excruciatingly painful. It happened after my muscles felt very weak. Once the clamping was over, I was sore but the muscle strength had improved. This wasn't related to IV fluids or anything though... My heart goes out to you! I really hope that doesn't happen to you again. I reckon there is a possibility it was a kind of autonomic storm. Take good care
  3. Hello Sif. Thank you for your reply! The peeing thing.... I dislike it so much. It is very frustrating trying to keep up with a body that has absolutely no interest in holding in to fluid. Feels like a kind of betrayal. I become weaker and weaker and out-of-it eventually. And I know there is no help, because apparently no body would continue to get rid of fluids if the body NEEDED the fluids. I have also been told that me drinking electrolyte drinks is no different from having IV fluids - but during these times, I pee out everything I drink and more (as well as sweating HEAPS... It feels like my body is just leaking all the fluid out any way it can) however, the IV fluids seem to stabilize something, and the excess peeing goes away. Please let me know what your specialist says, if you can! I didn't take the midodrine this morning. I just couldn't bring myself to do it because yesterday after taking it, the suffering was immense and I almost ended up in hospital. I am going to see if I get really sick & weak today or not.. And keep checking my blood pressure. Then tomorrow I will take the medicine again and see what happens. So far today I feel much better than the days on the midodrine. Not good news if the midodrine doesn't agree with me, but I am going to keep trying with it. Take good care Sif!
  4. Thank you for the replies everybody, and for that informative link, Alex :-) I think I would need that kind of test done, though I don't know if we have the facility for it here in New Zealand. Will try and look it up again. I would think the simple fact my pulse rate etc improves after IV fluids might indicate I have low blood volume anyhow? I found this link as well - can anyone tell me if it means what I think it means? Does it mean that you can have normal blood sodium levels but hypovolemia is different from straight dehydration, and needs to be tested for differently? http://medicineoutofthebox.com/2010/09/29/dehydration-and-hypovolemia-differences-can-be-important/ Take very good care all! :-) good luck with the testing fussy bug!
  5. Hello all, One other question: IV fluids help me more than any other treatment I have tried. Objectively, my heart rate improves a lot after having IV fluids. I drink a lot and have electolyte drinks etc but at my worst, inhave a problem where i pee more than i can take in, for days and days on end. Would all this suggest I have a problem with low blood volume? I have been told by a doctor that I do not have low blood volume because my blood sodium levels are normal. Is this a good indicator of blood volume levels in people with POTS? Information about this much appreciated
  6. Is this even possible? Been on small dose for 2 days. I am having much more severe muscle weakness with it and my blood pressure has dropped. I can't believe it. How could this happen? Also I stood up at one point (though had to bend over as I felt awful - lik my head was 'empty' and I was about to black out) , checked blood pressure and heart rate... Blood pressure was 105/40 and heart rate 121. *usually* standing up and my heart rate rising means my blood pressure will go up to about 125/80. My heart rate has definitely slowed since starting th Midodrine but the lower blood pressure (80s over 40s in general) is not nice and the worsened muscle weakness absolutely awful. Anyon else had this kind of reaction to Midodrine? I have to keep taking it because my illness is so bad at the moment and it is kind of my last hope for treatment. I am already on Florinef. Can't take beta blockers because even on a minuscule dose I become progressively more fainty. The only thing that has helped of late is IV fluids from my GP, which reduce a lot of my suffering. It is frowned upon to use that as a treatment though. I have a problem where I pee and pee more than I can take in, for days on end. It often ends up looking like water, but shouldn't it look dark since I am becoming more and more dehydrated? Take good care everybody. Thanks for reading
  7. I have given up looking for a root cause because I don't think it's possible to find it here in my country. I am unsuccessful with managing symptoms (though there have been short periods where they have been much more tolerable over the past 2.5 years). Some days I feel very positive that my body will heal itself anyway, over time. Other times I think 'this is it now, for the rest of my life'. I do not let myself dwell on that thought though because it is unhelpful and nobody really knows what will happen. I could magically start recovering tomorrow. :-)
  8. Welcome! I am glad you finally have the diagnosis. I really hope you find some things that work for you and help you recover. Take very good care! :-)
  9. I was originally diagnosed with CFS (much to my surprise). This was years before I was truly 'struck down' by illness. I knew something wasn't right back then though, and over time though I continued doing everything I had always done, it became harder and harder to the point were to was pretty harrowing. Then suddenly my internal organs and glands swelled up, had a couple high fevers, liver count low... Then thyroid suddenly very over active. Following that, diagnosed with severe POTS. Never been the same since. I had POTS when I was diagnosed with CFS - in fact I am pretty sure I had it all my life, but to a lesser degree before. Does that mean the CFS diagnosis was incorrect, I sometimes wonder( If it is a diagnosis made by excluding anything else that could account for symptoms).
  10. Hello everybody, I am fed up with the frustration, and life passing me by. Decided that as soon as the dysautonomia symptoms improve a bit following my latest bout of thyrotoxicosis, I am going to go rollerskating with my daughter. By 'go rollerskating' I mean covered in protective gear, in a safe empty place with my husband there for help if need be, maybe for just 2 minutes at a time... But at least it will be 2 minutes of feeling a tiny bit of freedom from my body prison! Does anybody else skate despite dizziness etc? Any tips/ advice? This is something I am totally determined to do, no matter what. I hope it is enjoyable!
  11. I know what you mean Emma. Not just a heart rate/blood pressure thing at all. It *is* great to know we are not in mortal danger from this illness, and I think some docs are just trying to reassure us. The feeling sick 100% of the time for years on end (just a matter of degree at any given time) is rubbish though, and very life altering!
  12. Thank you for responses. I can't write much right now but will return. I am 'glad' these are normal POTS symptoms. Doctors here kept telling me over and over that my symptoms can *not* be explained by POTS/dys but also keep telling me they know nothing about POTS/dys so it seems a bit off for them to make judgments about my mental health based on the episode they asked me to induce. I *really* overdid it before that episode happened. Will be back. Take very good care everybody! Will have to look into mast cell thing too thanks for the idea
  13. Yes, nausea is something I forgot to write - I keep adding things as I remember them! I am also on florinef, Seattlepotsy. The only drug I have had some success with so far. Just been upped to .2 which is the highest dose I ever had of it. So do the autonomic specialists over in the US actually know about these 'episodes' in relation to POTS? Pretty sure I have been written off as a nutter by the medical docs at hospital now which is disheartening. If i do lots of activity where i feel very sick doing it, i WILL end up having episode(s) afterwards as a result. Almost like my body gets fed up and lets go of the reins. The amount of stuff i can do before this happens varies thiugh, depending on how bad my POTS is at the time. There is so much more I could write about things but I am too tired. Doc asked if I ever flail my arms around at start of an episode. I do not. Just have the severe shuddering. Thank you for responses :-) take good care!!
  14. I am allergic to newspaper too. Get terrible sneezing attack, hissy breathing etc. only since the POTS got really bad.
  15. Hello Sif. The thyroid problem really does a number on my body and affects the POTS. I think I have had POTS all my life, but only became disabled by it after the virus then over active thyroid bout the first time. Never recovered since then and the latest thyroid episode has stirred everything up even worse again. An episode goes like this for me: It often starts after I have been up and went back to bed feeling yuck. Things spin suddenly and I feel like I am going to pass out. recently laying down with legs up my blood pressure read at 78/46. Heart rate 80. I was saying 'I think I'm going to pass out'... Then quickly my heart went faster, blood pressure up etc... But the symptoms are such: Feels like I am underwater. Vision clouds, hearing fuzzy, etc. things seem very far away. My hands and feet become profoundly cold. Sometimes I feel it happen within a few seconds - as though my hands and feet have been plunged into ice water, At the same time, Head/neck/torso very hot. Sometimes flushed after a while, not uncommon for me to get low grade fever suddenly with it too. Sometimes horrible flushing pain from base of my skull down spine. Hard to breathe - I *think* I have figured out this is due to my muscles clamping down though. Muscles clamp all over my body with severe shuddering. Feel very weak in my arms, legs and chest. Sweaty. Nausea. Am told I go 'as white as a sheet' by doctors/nurses as well as family members. This one of the first symptoms when it happens. Pee a LOT - and for some reason peeing makes me feel better. Most inconvenient time to be peeing huge amounts though. Sometimes anxiety though if i work hard to control it I can sometimes slow my heart rate to pretty normal when laying with my legs up.... But all the other symptoms are precisely the same! Staying calm does not make them go away at all. Having legs up helps and so does ice pack especially on back of my neck. It basically feels like my body has chucked out some kind of hormone. So many similarities with the thyrotoxicosis, and also similarities to when I gave birth with no pain relief... During the pushing phase, I had the same shudders. This has made me wonder if it is adrenaline? Before an episode I often feel very s l o w and floppy and fainty and it is almost as though going through the episode tightens everything up again and (after a rest because the episodes are extremely exhausting) I feel a bit better. Episodes usually last an hour or so and take hours to recover from. On my worst days I have multiple episodes and I can't even describe how awful that is. The exhaustion is so deep. I know from the very beginning of all this that when they gave me IV fluid in hospital, my symptoms improved. I see recently that some POTS patients in the US are actually given that as a treatment for POTS. I can understand why. It is one of the only things that has really helped me during my worst times. A doctor told me a couple of years back when I mentioned it, that there is no way the IV fluid would help my illness because it is exactly the same as drinking ( I already drink electrolyte solution to try help symptoms) but it doesn't SEEM to be the same thing. IV fluids seem to be considerably more effective. Anybody else experience this and what do specialists say about it? No specialists here and it is very difficult sometimes when I just want to get better. Being made to see a psychiatrist was a bit insulting but also worrisome ... Feel like I can no longer seek help at hospital when I am very unwell which is kind of a cruel thing to do to a patient. Thankfully I have an awesome family, though I don't like my illness situation causing them inconvenience either! I used to be out there doing fun things with them. I miss it and feel very frustrated a lot of the time.
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