just an update…

just an update…

I feel I owe you all a follow up after my last few posts. After having a difficult time for a few weeks, I finally started to feel a little better this week (assuming 2.5 day migraines don’t count). My mom returns tomorrow for her clinical drug test and will be here all next week, so the timing is perfect. I seem to have established a regular pattern where I push through my mom’s visit, feel awful for a while afterward, and start to feel better right as she comes to town. Wash, rinse, repeat.

As long as I can take care of her when she’s here and get her to her appointments, I don’t care how I feel the rest of the time. I thought I would share what I have changed, in case it’s helpful for someone else. As always, never start or stop any course of treatment without talking to your doctor first.

  • I doubled my beta blocker. I have been very resistant to increasing any medication. I still hold out long-term hopes that one day I will be medication-free, and increasing the BB is a big step in the wrong direction. I’ll worry about that once this is all over. Right now I’m focusing on the short term.
  • I started taking a multivitamin, iron and magnesium regularly.
  • dog
    he’s not very good at hide and seek

    One of my frustrations with the low-histamine diet is that it eliminates certain foods that provide the largest quantities of specific vitamins and minerals. Tomato sauce, spinach, bananas, oranges, and swiss chard are all on the list of foods to avoid, and yet they are all high in potassium. I recently begun drinking coconut water regularly. It tastes awful, but it’s very high in potassium.

  • I have ceased formal exercise (like going to the gym or riding my stationary bicycle), but…
  • I play with my dog more. It’s good exercise, because we chase each other and go on short walks. No matter how bad of a day I had, he always makes me smile, helps lower my POTS-related adrenaline rushes, and brings things in perspective.

    tweet from @tha_linds twitter
    true story
  • I started a meditation journal where at the end of each day, I write down something I’m grateful for. It doesn’t have to be something deep – in fact it’s usually not. For example, today I’m grateful for the twin turbo engine in my car. Because, man, is that thing fast. Again, it helps me focus on something besides my health and watching my mom decline.
  • Regular naps help me catch up on some of the sleep I’m missing at night.

My sole goal in life right now is to live my life such that when she passes away, I won’t have any regrets about whether I could have done more for my mom. Everything in my life right now is centered around that one goal.

During this visit, my mom will be offered the chance to participate in an extension of the drug study. If she declines, the study will end in 2 months. If she accepts, we will be on this rollercoaster for another 12 months. It will be a difficult year, and I’ll need all the help I can get. If you have any super secret “feel good quick POTS remedies”, please pass them on 🙂

“Attention is the first and final act of love, and the ultimate dwindling resource in the human arrangement isn’t cheap oil or potable water or even common sense, but mercy.” – Steve Almond

Smell ya later.
– Linds

11 thoughts on “just an update…

  1. Sorry your mum is not well Linds. I went through it with my mum 10 years ago – pre pots. Well I suspect I had a mild version of hyperadrenergic pots since my early 20’s as I always used to feel awful when we I had any stress. I don’t have any tips, only that i like your attitude about not doing what you can and not having any regrets. On a positive, cancer gives us this time with our loved ones.

    I have found over the years my pots has changed. Have you ? My pulse doesn’t shoot up as high when I stand now, and it sits under 100 often but I get symptoms the longer I stand without the tachy so much, so I suspect it’s bp related more now days. I was super hyperadrenergic when diagnosed but I’m finding now it’s more just when I overdo it or when I’m stressed, like you would be now. Hopefully the increased beta blocker helps you during this tough time. Are you able to take anything to support your blood pressure now you have increased your bb? Have you tried florinef again? Or even Midodrine?

    1. hi Jo!! i was just thinking about you the other day!

      i also find my POTS has changed over time – my HR doesn’t climb nearly as high, like you it’s often under 100, but i can’t stand for nearly as long. Just a couple minutes in line is all i can handle. everytime i check my BP its normal, but maybe it is dropping low when i’m standing in line for a bit.

      how have you been?

      1. Hi Linds!

        That sounds exactly like me, bp normal or if not on the high side when I’ve checked it because I had to sit after standing a little while. I did catch a drop once when this happened of 95/48, followed by an overshoot of 148/120 and then returned to normal. All in a few minutes of sitting back down!

        I feel better not having the high heart rate. I still take my 6.5mg of atenolol at night and I take half (0.05) of florinef in the morning. At first that gave me like an adrenalin response but my body got used to it and I think its helped the heart rates? I started it last October. I feel like it took about 6 months to really kick in. I want to increase but each time I try I get too adrenaliney.

        I’m still taking my Zyrtec and Zantac and also allergy eye drops, nasal spray and puffer. My allergies are worse than ever! I’m still chugging down the salt and wearing compression stockings and guess what…I’m working! Only 2 x 6 hour days a week but it’s something.

        Has anything else changed for you or your Med regime other than the increase bb? ________________________________

        1. wow, congratulations on the job! that’s great!

          i like that my HR doesn’t jump to extremes anymore, but i wish the other symptoms would get better. i still get dizzy and lightheaded very quickly. i reacted so badly to the florinef last time that i don’t think i will try that one again. these days i’m on atenolol, zyrtec and zantac, and cromolyn. my doctor gave me a prescription for montelukast (singlar) a while back that i may get around to trying one of these days.

  2. I hope the increase in your BB helps you to feel better/continue to feel a bit better while your mom is there & you are caring for her. I don’t have a lot of tips because I can’t tolerate meds at all so I just have to control my environment for autonomic stressors. But I will say that magnesium has a very relaxing effect on my muscles, almost sedates me(I am extremely sensitive to meds), vitamin E relaxes my blood vessels causing hypotension/fatigue plus gives me extra heartbeats so I can’t even eat fish…I avoid those two things in vitamins to avoid feeling way worse. But I realize I don’t metabolize normally and you may tolerate the magnesium/vit E just fine…just wanted to throw that out there in case the multi vitamins make you feel any worse.
    I have the hyperadrenergic type as well and am also finding that I go through times where I don’t feel as bad but boy do I pay for that after a few days or after a day event like going to doctor 2 hours away in traffic or even a family party, I am even finding that long conversations where I have to move my mouth long enough to talk for awhile can set me off or exhaust me…feeling good is usually a pretty short term & misleading feeling because I feel like I am kicking this finally…but then the disappointment when I flare up. I understand any frustration you endure but you seem to have a better mind set about it and I actually am learning from you and hoping to feel better mentally about having this disorder because I get so frustrated about the not able to work part. I am very hopeful with the findings of the M1/M2/M3 antibodies seemingly so prevalent among POTS patients, that we are really on our road to recovery–or at least at the starting line…even if we have to wait a few years for the testing ourselves or a more targeted treatment. Perhaps some IVIG will be in order for more of us at that point. I just try to remain hopeful that they will find something to treat or even cure us in the next few years.
    I also understand the migraine issues, I have average 18-22 a month. I had one that lasted 32 days recently and was always contemplating going to ER for a IV treatment of toradol or something to break it but I just kept using my relpax(which isn’t great to do often). I will say relpax works beautifully on migraine but should not be used daily. I am hearing about new drugs called CGRP blockers for migraine, they are coming out soon! They target specific nerve branch in head that causes many migraines but the new drug does not affect other parts of brain/body so side effects are nill..plus it lasts several weeks or even months with one injection dose! I can not wait for those to be released into market. 🙂 In case you hadn’t heard about them, you may want to ask your dr sometime about them, they should be out soon from what I hear.
    In the short term, I really do hope your treatments start to bring you more lasting relief!! And I think it is wonderful you are taking care of your mother even while you are dealing with so much yourself!

    1. wow. WOW. i can’t imagine a 32 day migraine. i don’t know how you handle that, but i have so much respect for you that you do. thanks for the info about the CGRP blockers – i had not heard about them.

  3. I don’t have any feel good quick remedies but I have a suggestion for potassium if you can have sweet potatoes, they are very high in it.
    Check it out, I know a friend tested low in it and was told to eat them. He researched first and said they are a great source, he is doing great now. He was having bad muscle cramps.
    It can be very draining when a parent is sick even if you aren’t a caregiver.
    My father’s health is declining, but I can’t see him often.
    Sending my best to you and your mom.

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