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A fresh start (2)

Hey there everyone,

A blog entry to write down some updates.
Not much has changed in the past days, I have some difficulties with the sunny warmth outside. The medication that I take for 'pots' do help me, but the effect seems less strong now compared to when I just started.
Still though, it feels very much worth it to take them.
All of the effects are mild, and tiny in how they present themselves, but all together it makes a big difference.
What it does for me so far:

- Less brain-fog after taking a tablet, it takes a while but then I have one or two hours in which I feel more clear, which makes me able to concentrate and work a bit on things. This effect is the best, the brain-fog is my worst symptom because it disables my mind. I am so happy that I now have some more hours every day in which I can think a little bit more clear. I think brain-fog is my most frustrating problem, I need my mind :) to work on my life.

- During the moments of less brain-fog I also definitely feel less dizzy and lightheaded. I have less trouble with blurry vision and less light sensitivity. It all comes back later on, but these good moments have become very important to me very quickly.

- Less trembling and less muscle spasms. I used to have tiny muscle spasms 'all the time', they where hard to literally see but I felt them. In one minute there would be several, all day long, and could be anywhere in the body. In my legs and neck a lot, in my hands, in my stomach, my skin, my face etc.
These spasms are almost gone, and only seem to come back when I forget to drink loads of water, when I do too much, or when I am stressed out about something. But when I calmly do my things during the day, I have no trembling.
My whole body feels less wired. I was surprised when I felt this happening, because I cannot remember feeling that way before. I was so used to the wired feeling that I did not know how it can be different anymore. I was not aware of it.
But its a big difference. My body is less stressed out.

- Pulse pressure is not as narrow anymore. Its still a low blood pressure, but I have not seen any pulse pressures lower then 25 in the past week. Which is great I think.

- Drinking water seems to have 'more' effect then before, I already drank a lot but now the positive effect of it seems to last a bit longer.

- The moments of feeling extremely hot are almost completely gone. I used to feel huge hot flashes several times a day, lasting for 30 minutes to hours. It felt horrible because I felt so hot that I felt that I would pass out. (usually I did not pass out, but the feeling was there). I still have them every now and then, but definitely not several times a day anymore.

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There are also things that did not change yet.

- My heart rate still rises when I stand up, yesterday I rose 35 beats, in 1 minute of standing.
I did not 'test' any longer because I did not want to lose my precious energy, I was feeling good at the moment and did not want to ruin that.
My blood pressure stayed the same in that minute, it did not drop or rise. (102/59)
My theory for why I still feel better is that maybe my blood volume has changed and that its less work for my body to keep everything steady and flowing. But thats just my noob theory.

- Still feel extremely tired after exercise like vacuuming, taking walks etc, and going to my workspace with my bike, which is a couple of minutes away from my house. After riding there I need to walk a staircase, the staircase is a huge trigger for trouble. It always was, and still is. For some reason, walking the stairs after riding the bike, causes me to become really weak and feel really bad.
I still force myself to do it because I know my body needs some moving around, otherwise I will just cause it to decondition. Which will make everything worse.
So I do these things even when it takes such a big chunk out of my energy supply.

- I still wake up feeling really tired, blurry, hot etc. It does pass sooner because I drink a liter of water and that helps. I also allow myself to take more time now, since I have the confirmation that something is off, its easier to slow down without feeling bad about myself.

- Prolonged sitting on a chair will cause my heart to slow down a lot, and make my brain-fog return. At the moment my resting heart rate is around 53, sometimes it drops into the 40/50 range as well. I know its not dramatically low, but I do feel bad then so I guess its not optimal.
I have been reading on the forum and found the term 'pacing', which is interesting to me. I had never heard of it before. I can try pacing as well, keeping my heart going and not sit for too long. I can stand up lots of times and walk around or jump a bit, to make it go faster. Maybe that will help a bit.

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Thats about it I think :)

Comments

Hi, you dont mention taking extra salt for the POTS. This can be quite important too and should usually be done with the meds for it and the taking the extra fluid (as it then helps also to retain the fluid).

It sounds to me what you are doing is helping but quite possibly you could be helped for this even more eg wearing the right medical compression stockings is another thing which is often done in conjuction with those other things for POTS as it then helps keep more of the blood volume in the upper body.
 
Yes definitely salt and compression stockings help keep blood volume up. Glad the fludro is helping. It gives me massive headaches because it puts my BP up too high. Also, watch your potassium levels because this drug depletes your levels. I take some saline drinks and an electrolyte supplement that gives me some good results. Sounds like you have bradycardia as well as tachy and many Potsies say this feels worse than tachy. Following with interest. Do you have pots, too, @taniaaust1?
 
@Jackylberry , The doctor informed me about the potassium levels, we are going to test the levels three months after I started using the flucrocortisone. So I think that will be ok.
He did not want me to take potassium yet, as it can get too high as well.
I am not sure if I have bradycardia, it has not been called that way before. It does get low, but it rises whenever I do things. I sometimes wonder how low it goes when I am asleep though.
Low heart rates make me very sleepy, to the point where I just fall asleep while sitting upright. The type of sleepy that is really hard to fight. Sometimes I jump up and down to get my heart to go faster.
 
@taniaaust1 , you are right, I have not mentioned that yet. I do try to figure out what to do with salt/sodium intake. I have not had any advice about it yet. I think the doctor wants to see how I am doing on my normal salt intake combined with the fludrocortisone. I already consumed a bit more salt then most people do, and told him so.
I have low blood pressure again at the moment and the last couple of days I tried to battle that with salt, but its not working. No idea if I am taking enough though.
 

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JuliaMaple
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