I've made amazing improvements this weekend. I am putting it down to taking LIQUORICE ROOT. I read on the DINET site of a few people who'd found it helped them- it works similarly to florinef without the side effects. The important thing for potsies is to take the type that has the glycyrrhiza stuff in it, NOT the de-glycirrized type. (They sell DGL liquorice root for people who might end up with high blood pressure as it's the ingredient that can raise bp- now for some with POTS this is a GOOD THING!).
I still get the fatigue but since taking it I don't get the WEAKNESS. I started with that symptom only recently- around November last year, and crashed horribly from it. It was only then that I realised I even had tachycardia (because it got worse) and thus chased up my diagnosis of POTS by getting myself referred to a specialist. So, I don't know exactly how long I've had it, but judging by what happened to me at universiry, my guess is since then (9 years). Back then, when it first started, I had the weakness, nausea and panic attacks. It took me years to improve but I got stronger gradually year by year. Then in 2008 I got a mono-type infection in the Summer, followed up by flu and bronchitis over Christmas/January. Strangely enough, I joined a rambling group in March 09 to get my fitness levels back up after the mono-thing, as it did really weaken me, but it wasn't until November the following year that I had the weakness and the noticeable tachycardia. But, I've had POTS symptoms all along since at least 2001 and have probably had tachycardia all along, I just never realised.
Having 'survived' this long unmedicated, I recently decided I would only take pharmaceuticals for the POTS itself if I NEED to. I take them for one of the conditions I have thanks to POTS, overactive bladder, and couldn't do without those meds, so I'm not against meds but only if they are NECESSARY. As I am doing pretty well without them, I don't want to take them, for fear of what would happen if I got worse and was already medicated. So I am leaving those for a last resort!
So, for that reason I decided to try liquorice first as I was having issues with low blood pressure, and always felt worst when it was this way. Within two days of taking it, I was getting numbers in the low 100s over 70s, and my inappropriate sinus tachycardia is MUCH less significant- which in itself has helped immensly. (No more heart rate climbing to 120 just reaching for a glass of water!).
I had one day where I even had a normal standing heart rate (80s!). I got overexcited and did a load of working out. Too much, really- but it was worth it as I enjoyed it so much! I felt terrible the next couple of days though, extremely fatigued and brain foggy* BUT my bp was still good and stable. If it wasn't for the fact that my vital signs were good, I would not have gone out Friday night as I felt really bad... but I figured it was fatigue from over-exerting myself with the work-out on Tuesday, and that since my vitals were okay, getting out and seeing my friends would do me good because I knew if I stayed in just because I felt tired, I'd feel miserable and defeated, which for me felt like the worst of the evils.
I'm still learning how far I can push myself and when not to push so I figured I'd go out and come home early if necessary. The funny thing was though, going out perked me up! My two closest male friends were very considerate in that, as I couldn't stand up chatting with the rest of the group, they'd sit with me and keep me company so I was never left 'alone' or left out. I stood for a brief period socialising until I started feeling hot and sick. We were going on to a 90s bar/disco after that and I wasn't sure how I'd feel but was optimistic I'd be okay. I've always loved dancing and have always found my body to be amazing in its ability to allow me to do that- I even danced at my cousins wedding when I had the mono! (At the time I thought I had a 'virus' as I have been prone to getting random viral things ever since the original one in 01 that I believe gave me POTS!). I remember thinking at the time 'wow I can tell I have a virus, I'm running out of steam already!' but I still managed to dance long and hard. That's why it was awful when I had the pots crash November because I could only dance for a few minutes before I got breathless, tachy and weak; nothing had ever made me feel that way before!
So, Friday night I was hoping that wouldn't happen and thankfully it didn't. So I'm wondering if the weak feeling is the sign of my bp being low. I also got the weak feeling a lot when my hormones were unbalanced due to changing contraception methods- had a rough few months with that til they settled.
Thanks to feeling stronger, I managed to dance for a couple of hours and didn't get home to bed til 3am. Then I went to stay with my boyfriend and I slept barely a wink. I can't imagine why as I was exhausted after my exertions; his curtains don't keep enough light out for me but even despite that I thought I'd sleep, but didn't! So, on Saturday I really cannot believe how far I walked as I felt so beyond tired. But the strange thing is, I do feel better when on the move. So, we did a lovely walk (the new area we are exploring is mostly flat which is fine for me- I think my body is used to having a heart rate of 130-140 when walking around, it's when I climb hills it gets difficult) and it turned out it was around 9 miles! My bf wanetd to do another walk the next day and I, non-commital as I always am (there's no predicting how you feel one day to the next), I said I would see how I felt.
Next day, felt tired, legs felt a bit achy but stronger. No weakness. So we walked for 4 miles, had a rest, then walked all the way back. Another 8 miles clocked up!! That after a night of dancing, a sleepless night, and a 9 mile walk! The second walk even involved a few more hills!
Now that I have stopped, I do feel incredibly tired today. Like 'not with it' type of fatigue. Like as long as I don't have to do anything mentally taxing like buy a parking ticket** or go to a public toilet in an upstairs bar***, I'll be okay. Just sitting, typing, browsing the net, doing what I can to keep occupied and stay awake.
But the fact I managed to be so active, at a time when I wasn't sure I should be doing *anything* has really given me hope and a positive feeling. I still have to 'pace myself' and turn down activities and make sure to schedule in times when I can 'recover' or 'prepare for' things, but I am counting myself very lucky that despite POTS, I'm still standing, yeah yeah yeah! ;-)
*see my following post 'brain fog escapades'.
** you shall see...
*** keeping you in suspense, but all will be revealed...
Tuesday, 1 June 2010
Friday, 28 May 2010
Decided.
I've been 'too chicken' to do this for years (well, actually it's because my local hospital is horrible and I've had one too many bad experiences there, first hand as well as when my Grandad was there dying and how awfully he was treated). But now patients are allowed to CHOOSE their own hospital, I am going to do it if I have do.
Do what?
Go back to see a urologist.
You see, they wanted to do urodynamics tests on me and my cystoscopy was so awful (done by an intern, and not very well I might add!) that it put me off having any further investigations at that hospital and I discharged myself.
But now what I figure is this- if I can't take desmopressin OR if it doesn't help, I need to try and find something that does/will. I heard a while back about interstim therapy, a sacral nerve stimulator that can help bladder conditions, but I thought you had to have interstitial cystitis to have one. You don't.
Now that I am diagnosed with a neurological condition, I feel I'd be more able to push to have one if other therapies don't work. The oral medication I am on now DOES make a difference, but it's not enough. If I leave the house, I still get ultra potsy because I can't keep my fluids up as much as I would were I near a bathroom- because my bladder capacity is so reduced due to my nerves not working right. If this sacral nerve stimulator could help to increase my bladder capacity, then I'd be able to drink more and would thus be less potsy. That way, I might actually be able to live a more 'normal' life.
So, depending on the outcome with desmopressin, I'm going to see a urologist AT A DIFFERENT HOSPITAL about it. At this point, ANYTHING that could help me with my bladder symptoms I would be willing to try, because they make dealing with pots so impossible, plus as much as I do drink I think I pee it right back out anyway!!
So, just waiting to see what my specialist says about desmopressin... if I can try it and it works, great. If not, urology here I come...
Do what?
Go back to see a urologist.
You see, they wanted to do urodynamics tests on me and my cystoscopy was so awful (done by an intern, and not very well I might add!) that it put me off having any further investigations at that hospital and I discharged myself.
But now what I figure is this- if I can't take desmopressin OR if it doesn't help, I need to try and find something that does/will. I heard a while back about interstim therapy, a sacral nerve stimulator that can help bladder conditions, but I thought you had to have interstitial cystitis to have one. You don't.
Now that I am diagnosed with a neurological condition, I feel I'd be more able to push to have one if other therapies don't work. The oral medication I am on now DOES make a difference, but it's not enough. If I leave the house, I still get ultra potsy because I can't keep my fluids up as much as I would were I near a bathroom- because my bladder capacity is so reduced due to my nerves not working right. If this sacral nerve stimulator could help to increase my bladder capacity, then I'd be able to drink more and would thus be less potsy. That way, I might actually be able to live a more 'normal' life.
So, depending on the outcome with desmopressin, I'm going to see a urologist AT A DIFFERENT HOSPITAL about it. At this point, ANYTHING that could help me with my bladder symptoms I would be willing to try, because they make dealing with pots so impossible, plus as much as I do drink I think I pee it right back out anyway!!
So, just waiting to see what my specialist says about desmopressin... if I can try it and it works, great. If not, urology here I come...
Woke up all assertive.
So, yesterday, my ultra potsy day.
I think that the problem was hydration. When I got home from the trip out with my Mum, I felt EXACTLY as I do when I've been travelling by aeroplane. The only reason I can think for feeling that way is dehydration.
Because I have an 'overactive bladder', when I go out anywhere I am reluctant to drink very much water, which as we potsies know, is not good for pots!!
The way I have managed this is by going places in the afternoon and drinking around 3 litres before leaving the house. Then slowing down my intake about an hour or so before leaving the house, so I can be sure that my bladder is empty when I leave and thus won't be pestering me to go to the toilet too soon.
However, life can't always begin in the afternoon! There are things I want to be able to do that will involve leaving the house in the morning and even things that would involve being out all day. Things that right now I feel I couldn't do whilst keeping up my fluids because I'd need the toilet and not be able to go. :/
If there is any chance or any way something can help with my symptoms of peeing out every 250-300ml then I want to take that chance. I have read about some potsies taking desmopressin to help them retain fluids and I had asked about it at my diagnosis appointment and been told it was a possibility. Now, I don't know whether something has been lost in the communication between my Drs and my specialist but so far nothing has happened about that beyond me getting some tests for diabetes insipidus. But I know of people taking it IN THE UK who don't have that so I know it CAN be done. So, I have once again taken matters into my own hands and emailed my specialist asking if there's any chance I could at least try it, in case it does help me retain fluid.
All she can do is say no, but if I don't ask then I won't know!
I think that the problem was hydration. When I got home from the trip out with my Mum, I felt EXACTLY as I do when I've been travelling by aeroplane. The only reason I can think for feeling that way is dehydration.
Because I have an 'overactive bladder', when I go out anywhere I am reluctant to drink very much water, which as we potsies know, is not good for pots!!
The way I have managed this is by going places in the afternoon and drinking around 3 litres before leaving the house. Then slowing down my intake about an hour or so before leaving the house, so I can be sure that my bladder is empty when I leave and thus won't be pestering me to go to the toilet too soon.
However, life can't always begin in the afternoon! There are things I want to be able to do that will involve leaving the house in the morning and even things that would involve being out all day. Things that right now I feel I couldn't do whilst keeping up my fluids because I'd need the toilet and not be able to go. :/
If there is any chance or any way something can help with my symptoms of peeing out every 250-300ml then I want to take that chance. I have read about some potsies taking desmopressin to help them retain fluids and I had asked about it at my diagnosis appointment and been told it was a possibility. Now, I don't know whether something has been lost in the communication between my Drs and my specialist but so far nothing has happened about that beyond me getting some tests for diabetes insipidus. But I know of people taking it IN THE UK who don't have that so I know it CAN be done. So, I have once again taken matters into my own hands and emailed my specialist asking if there's any chance I could at least try it, in case it does help me retain fluid.
All she can do is say no, but if I don't ask then I won't know!
Thursday, 27 May 2010
The email
The one I mentioned in my previous post had this to say:
Q: I get so tired at times of the uncertainty of life, the unlimited aspects of life that are revealed in a moment, and then as soon as we think we know what it is, it becomes something else to navigate. How does one ever come to terms with this?
A: Our experience of life is determined entirely by our point of view. Life is simply an endless flow that we see through the glass of our sense of self. The color of the flow is the color of our glass. What is that flow? Never-ending movement. Is it uncertain, or is it simply a flow, like water running down the side of a mountain, or the sea endlessly kissing the shore?
"Uncertainty" is an interpretation of the flow of life, isn't it? A story.
This raises a question: Are we navigating a sea of uncertainty, a sea of opportunity, or a sea of ecstatic bliss? It all depends on our point of view, and that depends on our relationship in stillness with the flow of life. Uncertainty is actually quite certain, isn't it? Why should we argue with it? Arguing with it, expecting it to stay put according to our expectations, can be very tiring. Much easier to go with it, rooted in stillness rather than the constant change. An interesting thing happens when we let go of expectations in stillness. We find we have many more choices as we move through – unlimited possibilities for uplifting the flow of life. And there is joy in this.
The question of uncertainty gradually becomes a non-question as we engage in spiritual practices. The question melts into what is, as we become that which we were questioning. We find we are not required to take sides (no sides to be taken), or have a fixed point of view, and that doing so only harms us and others. This awareness becomes acute, and we learn from our own experience.
As we cultivate abiding inner silence, and see it (our silent Self) moving increasingly in resonance with the flow of life, then life is seen through a clear glass. It is seen as an endless flow of radiant divine love, beautifully adorned with all of its warts and blemishes, permeated with pure bliss consciousness all the while. We are That, and we find ourselves acting accordingly in the world.
We come to terms with the flow of life by awakening in the realization that we are life itself.
The guru is in you.
Q: I get so tired at times of the uncertainty of life, the unlimited aspects of life that are revealed in a moment, and then as soon as we think we know what it is, it becomes something else to navigate. How does one ever come to terms with this?
A: Our experience of life is determined entirely by our point of view. Life is simply an endless flow that we see through the glass of our sense of self. The color of the flow is the color of our glass. What is that flow? Never-ending movement. Is it uncertain, or is it simply a flow, like water running down the side of a mountain, or the sea endlessly kissing the shore?
"Uncertainty" is an interpretation of the flow of life, isn't it? A story.
This raises a question: Are we navigating a sea of uncertainty, a sea of opportunity, or a sea of ecstatic bliss? It all depends on our point of view, and that depends on our relationship in stillness with the flow of life. Uncertainty is actually quite certain, isn't it? Why should we argue with it? Arguing with it, expecting it to stay put according to our expectations, can be very tiring. Much easier to go with it, rooted in stillness rather than the constant change. An interesting thing happens when we let go of expectations in stillness. We find we have many more choices as we move through – unlimited possibilities for uplifting the flow of life. And there is joy in this.
The question of uncertainty gradually becomes a non-question as we engage in spiritual practices. The question melts into what is, as we become that which we were questioning. We find we are not required to take sides (no sides to be taken), or have a fixed point of view, and that doing so only harms us and others. This awareness becomes acute, and we learn from our own experience.
As we cultivate abiding inner silence, and see it (our silent Self) moving increasingly in resonance with the flow of life, then life is seen through a clear glass. It is seen as an endless flow of radiant divine love, beautifully adorned with all of its warts and blemishes, permeated with pure bliss consciousness all the while. We are That, and we find ourselves acting accordingly in the world.
We come to terms with the flow of life by awakening in the realization that we are life itself.
The guru is in you.
*sigh*
Feeling a little glum lately, ironic that had to happen after I said I wanted to write more about the positive. So I figured what I'd do, so as not to deny my negative emotions, is get them out first and THEN put in my 'despite dysautonomia' things at the end, to end on a positive note, to show others and remind myself that even though it can be hard to live with, life can be lived in happy ways despite dysautonomia!
So, feeling glum. Well, I guess it's mostly because I feel FRUSTRATED. I feel like my life is on hold. Because of pots I haven't truly worked (I don't consider my own business with very part time hours really working) and now I've made my mind up what I'd like to do, it's too late to apply for this year, so I have to wait until NEXT year. Next AUTUMN! And to top that off, it's not even guaranteed I'd get a place, so if I don't, I'd have to apply again in 12 to start in 13, or apply to do a different route into teaching, but again it would be starting in 2013! Because by the time the application process is over, I'll have missed the deadline for anything starting in 2012. So I basically get one chance only, if I don't accepted this year for NEXT, I'm waiting until 20-freakin-13!!!!
It makes me feel afraid and I don't like to feel afraid. It's daunting enough having pots in your life without other things having to be so hard on top of that!
I am trying to be optimistic though and tell myself I'll find a way to work with kids no matter what. If I don't get accepted for the Graduate Teacher Program, I'll find out by next Summer. So then I could get a job either as a teaching assistant or even a job in a pre-school or nursery. Although as I would prefer to be a teacher, I'd probably be best getting a TA job and working up to HLTA (top level) and then if I chose to reapply for GTP I'd have more experience.
I suppose I am feeling bad though because I'm assuming I won't get in- because I am thinking about this on a very bad potsy day and that always makes me afraid and think the worst.
So, what I will have to do is just do everything in my power to make sure I get accepted, so I can begin training in September 2011! And IF I don't, instead of feeling glum and panicky about it now, I will cross that bridge when I come to it! I am after all a big believer in the universe supporting and guiding me...
oh. my. god!
I can't believe how IRONIC this is what just happened!
As I was writing that sentence, an email popped up- just for long enough for me to see the title: THE UNCERTAINTY OF LIFE.
I believe in signs like that. So I will read it when I finish this blog, and I'm sure it will probably be telling me to embrace the uncertainty and not to worry because no one can know what their future holds so there's no point worrying about it!
So, I will just apply for the GTP with the best glowing references and glowing self report I can muster, and then pray and hope and ask my angels to pull out all the stops (I believe in angels and regularly ask them for help and they always do help- my driving test story is a class example of that!).
Then IF I don't get a place, well I will accept that 'it wasn't meant to be' and accept that the universe is steering me in a different direction, and that even though it wasn't in my plan to go that way, everything will turn out all right if I just have faith and trust!
Wow, I feel much, MUCH better now! hehe. Blogging is always so cathartic for me!
So, despite dysautonomia, I went out walking at the weekend in very hot weather and enjoyed most of it! Didn't walk as far due to the heat, but saw some very pretty countryside and took pretty pictures. Passed a trout fishery where they sell fresh trout, which we are going to buy one day for our tea! Yum yum!
Also, last week I went out with friends to a restaurant and had a lovely time chatting and catching up, and tomorrow I am going out for a friends birthday- and will no doubt end up dancing. Even though I have felt uber crappy today, I am determined to go as I've been looking forward to this night for months!
Oh, and today me and my Mum found a gorgeous lounge bar/restaurant where I am considering taking some friends when I've moved in with my bf (as it's near where we shall live). So there are many things about the future that are looking bright, even though it is uncertain, and I do believe things will work out for the best as they always do.
So, feeling glum. Well, I guess it's mostly because I feel FRUSTRATED. I feel like my life is on hold. Because of pots I haven't truly worked (I don't consider my own business with very part time hours really working) and now I've made my mind up what I'd like to do, it's too late to apply for this year, so I have to wait until NEXT year. Next AUTUMN! And to top that off, it's not even guaranteed I'd get a place, so if I don't, I'd have to apply again in 12 to start in 13, or apply to do a different route into teaching, but again it would be starting in 2013! Because by the time the application process is over, I'll have missed the deadline for anything starting in 2012. So I basically get one chance only, if I don't accepted this year for NEXT, I'm waiting until 20-freakin-13!!!!
It makes me feel afraid and I don't like to feel afraid. It's daunting enough having pots in your life without other things having to be so hard on top of that!
I am trying to be optimistic though and tell myself I'll find a way to work with kids no matter what. If I don't get accepted for the Graduate Teacher Program, I'll find out by next Summer. So then I could get a job either as a teaching assistant or even a job in a pre-school or nursery. Although as I would prefer to be a teacher, I'd probably be best getting a TA job and working up to HLTA (top level) and then if I chose to reapply for GTP I'd have more experience.
I suppose I am feeling bad though because I'm assuming I won't get in- because I am thinking about this on a very bad potsy day and that always makes me afraid and think the worst.
So, what I will have to do is just do everything in my power to make sure I get accepted, so I can begin training in September 2011! And IF I don't, instead of feeling glum and panicky about it now, I will cross that bridge when I come to it! I am after all a big believer in the universe supporting and guiding me...
oh. my. god!
I can't believe how IRONIC this is what just happened!
As I was writing that sentence, an email popped up- just for long enough for me to see the title: THE UNCERTAINTY OF LIFE.
I believe in signs like that. So I will read it when I finish this blog, and I'm sure it will probably be telling me to embrace the uncertainty and not to worry because no one can know what their future holds so there's no point worrying about it!
So, I will just apply for the GTP with the best glowing references and glowing self report I can muster, and then pray and hope and ask my angels to pull out all the stops (I believe in angels and regularly ask them for help and they always do help- my driving test story is a class example of that!).
Then IF I don't get a place, well I will accept that 'it wasn't meant to be' and accept that the universe is steering me in a different direction, and that even though it wasn't in my plan to go that way, everything will turn out all right if I just have faith and trust!
Wow, I feel much, MUCH better now! hehe. Blogging is always so cathartic for me!
So, despite dysautonomia, I went out walking at the weekend in very hot weather and enjoyed most of it! Didn't walk as far due to the heat, but saw some very pretty countryside and took pretty pictures. Passed a trout fishery where they sell fresh trout, which we are going to buy one day for our tea! Yum yum!
Also, last week I went out with friends to a restaurant and had a lovely time chatting and catching up, and tomorrow I am going out for a friends birthday- and will no doubt end up dancing. Even though I have felt uber crappy today, I am determined to go as I've been looking forward to this night for months!
Oh, and today me and my Mum found a gorgeous lounge bar/restaurant where I am considering taking some friends when I've moved in with my bf (as it's near where we shall live). So there are many things about the future that are looking bright, even though it is uncertain, and I do believe things will work out for the best as they always do.
Wednesday, 26 May 2010
An Amazing Experience.
I had an amazing experience yesterday. I woke up with a normal pulse!
I started taking liquorice root as I read a number of posts by people on the DINET forums who were saying how it had helped them.
For me to wake up with a normal pulse just sitting was amazing (usually, thanks to Inappropriate Sinus Tachycardia, I can always feel my heart racing) but I also checked out how I felt standing, and I felt fine... so of course I put my bp cuff on and checked my vitals.
112/69, pulse 85
So then I RAN upstairs and checked my vitals again.
110/75, pulse 112
After that I brushed my teeth (standing) for a couple of minutes and then checked again.
104/80, pulse 70
I could NOT believe it.
The strange thing was, I wasn't feeling good at all- I felt really drained and woozy. But, upon seeing my heart rate was so normal, I decided to finally do all the cleaning and tidying I'd been putting off. So,
I cleared away the clothes and coat-hangers I'd left out, I tidied my desk, I hoovered my room and the dining room and the conservatory, I danced, I did energetic knee lifts, I danced while lifting weights, I did sit ups and as if that wasn't enough I did 250 steps on level 3 resistance on my 'air stepper exerciser' and after THAT I ran on the spot for 10 minutes without stopping.
All while monitering my heart rate and keeping it around 140-160bpm.
Today, I feel exhausted and my body aches- but I haven't crashed. I'm not having a 'potsy' day or feeling awful- just very, very tired from all that activity and achy from the sit ups and weights.
My heart rate hasn't stayed normal today but the peculiar thing is I am still getting some normal readings- for example although it was elevated this morning, this afternoon (after my second dose of liquorice) my sitting heart rate was 60bpm. (It's usually 80-90).
My bp has been fluctuating a lot but I am getting some better readings with that too- in the 100s rather than the 80s for the systolic and in the 60s, 70s and even 80s for the diastolic rather than the 50s and 40s.
I went to the Drs today and got my prescription of diltiazem, but I haven't bothered to take one yet and may not if these good results continue.
It's strange and I am not getting my hopes up too much, but it's the most positive result I've had in trying something new, ever.
I started taking liquorice root as I read a number of posts by people on the DINET forums who were saying how it had helped them.
For me to wake up with a normal pulse just sitting was amazing (usually, thanks to Inappropriate Sinus Tachycardia, I can always feel my heart racing) but I also checked out how I felt standing, and I felt fine... so of course I put my bp cuff on and checked my vitals.
112/69, pulse 85
So then I RAN upstairs and checked my vitals again.
110/75, pulse 112
After that I brushed my teeth (standing) for a couple of minutes and then checked again.
104/80, pulse 70
I could NOT believe it.
The strange thing was, I wasn't feeling good at all- I felt really drained and woozy. But, upon seeing my heart rate was so normal, I decided to finally do all the cleaning and tidying I'd been putting off. So,
I cleared away the clothes and coat-hangers I'd left out, I tidied my desk, I hoovered my room and the dining room and the conservatory, I danced, I did energetic knee lifts, I danced while lifting weights, I did sit ups and as if that wasn't enough I did 250 steps on level 3 resistance on my 'air stepper exerciser' and after THAT I ran on the spot for 10 minutes without stopping.
All while monitering my heart rate and keeping it around 140-160bpm.
Today, I feel exhausted and my body aches- but I haven't crashed. I'm not having a 'potsy' day or feeling awful- just very, very tired from all that activity and achy from the sit ups and weights.
My heart rate hasn't stayed normal today but the peculiar thing is I am still getting some normal readings- for example although it was elevated this morning, this afternoon (after my second dose of liquorice) my sitting heart rate was 60bpm. (It's usually 80-90).
My bp has been fluctuating a lot but I am getting some better readings with that too- in the 100s rather than the 80s for the systolic and in the 60s, 70s and even 80s for the diastolic rather than the 50s and 40s.
I went to the Drs today and got my prescription of diltiazem, but I haven't bothered to take one yet and may not if these good results continue.
It's strange and I am not getting my hopes up too much, but it's the most positive result I've had in trying something new, ever.
Monday, 24 May 2010
Summer at LAST!
Okay so just a week ago it was cold enough for frost (stupid English weather and climate change- May should NOT be that cold!!!) and now it's like it should be- hot and sunny and lovely.
Okay, actually hotter than ideal for me but that said I do better in the heat than cold. I can sit under a parasol or in the shade if it's too hot, but I get to be in the garden, which I love.
So, this past weekend was really nice. POTS wise, I am feeling stronger. I still get symptoms of fatigue and dizziness but I don't feel as weak as I did in Autumn/Winter when I had my 'crash'.
Things between me and my bf are great too- I think he is learning about it more as I am learning to be more open and admit when I feel bad instead of trying to cover it up and push myself through it when that can make me feel worse.
Planning moving in together is exciting and I can't wait til he gets the keys and we can start decorating the place and making it OUR HOME.
Oh, and I can apply for the graduate teacher program in July. It sounds sooo hard and complicated to get into. Competition is fierce and given that I've never worked, I'm not confident about getting in. But at the moment I have this feeling that 'anything is possible' and so I figure that even if I don't get accepted, I can get a job in a school as a teachers assistant and work my way up to the higher level and then re-apply for the GTP and THEN I might get accepted after having some experience of actually working in a school. (It does say priority is given to support staff in schools- I've done that for years but only on a voluntary basis so not sure how they will view that).
I'm trying liquorice root at the moment as I've read a number of anecdotal reports of how it's helped POTsies, and I feel so much better to not be in a drug induced haze of fatigue that I'm hanging fire before trying another pharmaceutical, especially as it's another usually prescribed for low blood pressure with effects of lowering heart rate also. I'm going to see if the liquorice helps with fluid retention and raising bp (as it's meant to) and see if that has any difference on my hr. If not, well I'll introduce the diltiazem as well. I'm just concerned about taking that in case it could reduce the strength of my heart over time- and that's if it doesn't send my bp way too low again and give me that rotten fatigue like I felt on the BBs.
I soooo need to tidy, my room looks like a bomb has hit it as I started taking clothes out of my wardrobe to give to charity and then my bf rang me and once I stop an activity, I lose my energy and then can't get started again so right now there are clothes and coathangers everywhere and I don't currently have the energy to clear them away! Hopefully tomorrow.
I can't understand why I can't keep things tidy when I prefer things to be tidy, and it would make life sooo much easier because then I wouldn't have to keep doing these big, energy draining clean ups!! I am hoping when I've cleared away a lot of stuff I'll have more space to keep things in order. Practice for moving in with my bf who is so tidy his idea of 'mess' is a newspaper on the table and a drinks mat not put back in its holder. :/
Okay, actually hotter than ideal for me but that said I do better in the heat than cold. I can sit under a parasol or in the shade if it's too hot, but I get to be in the garden, which I love.
So, this past weekend was really nice. POTS wise, I am feeling stronger. I still get symptoms of fatigue and dizziness but I don't feel as weak as I did in Autumn/Winter when I had my 'crash'.
Things between me and my bf are great too- I think he is learning about it more as I am learning to be more open and admit when I feel bad instead of trying to cover it up and push myself through it when that can make me feel worse.
Planning moving in together is exciting and I can't wait til he gets the keys and we can start decorating the place and making it OUR HOME.
Oh, and I can apply for the graduate teacher program in July. It sounds sooo hard and complicated to get into. Competition is fierce and given that I've never worked, I'm not confident about getting in. But at the moment I have this feeling that 'anything is possible' and so I figure that even if I don't get accepted, I can get a job in a school as a teachers assistant and work my way up to the higher level and then re-apply for the GTP and THEN I might get accepted after having some experience of actually working in a school. (It does say priority is given to support staff in schools- I've done that for years but only on a voluntary basis so not sure how they will view that).
I'm trying liquorice root at the moment as I've read a number of anecdotal reports of how it's helped POTsies, and I feel so much better to not be in a drug induced haze of fatigue that I'm hanging fire before trying another pharmaceutical, especially as it's another usually prescribed for low blood pressure with effects of lowering heart rate also. I'm going to see if the liquorice helps with fluid retention and raising bp (as it's meant to) and see if that has any difference on my hr. If not, well I'll introduce the diltiazem as well. I'm just concerned about taking that in case it could reduce the strength of my heart over time- and that's if it doesn't send my bp way too low again and give me that rotten fatigue like I felt on the BBs.
I soooo need to tidy, my room looks like a bomb has hit it as I started taking clothes out of my wardrobe to give to charity and then my bf rang me and once I stop an activity, I lose my energy and then can't get started again so right now there are clothes and coathangers everywhere and I don't currently have the energy to clear them away! Hopefully tomorrow.
I can't understand why I can't keep things tidy when I prefer things to be tidy, and it would make life sooo much easier because then I wouldn't have to keep doing these big, energy draining clean ups!! I am hoping when I've cleared away a lot of stuff I'll have more space to keep things in order. Practice for moving in with my bf who is so tidy his idea of 'mess' is a newspaper on the table and a drinks mat not put back in its holder. :/
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