Tag Archives: Postural orthostatic tachycardia syndrome

New Heart Meds & First IVIG Infusion

15 Mar

IVIG First One

Heart Meds & First IVIG Infusion

My new home nurse came today at 9am (my usual bed time) to start my first home IVIG infusion. The infusion was supposed to last up to 4 hours. It ended up taking about 5.5 hours.

At my last appointment with my lyme doc she told me my blood pressure was too high and I needed to monitor it daily and record it. Well my nurse walks in this morning and takes my blood pressure and her eyes lit up and she said “you are 165/112 that is way too high and you have been just sitting there relaxing since I got here, you could have a stroke one day!”. I told her “yeah this is pretty common since I have hyper POTS I am always tachy”.  So she waited another 30 minutes and took my blood pressure again and we got the same reading.

So she was freaked out and said “in all of my years of being a nurse even in a hospital I have never seen someone so high constantly, most are brady or on the low side”. So she said she felt uncomfortable and called my LLMD right away to ask her to prescribe heart meds. Within 15  min Walmart had my prescription filled for Lisinopril 10mg. I am told to take up to 2 per day as needed if my heart rate is higher than the normal 120/80 and around the 130/90+ range. I have used Beta Blockers in the past for my heart but this med is new and different for me. It’s a ACE inhibitor. So I have hypertension/tachycardia again. But this wasn’t a surprise I have had high blood pressure off and on for 5 years and my Pulse OX used to set off the alarm at 115 pulse daily last year. I know a lot of POTs friends who are high BP also.

The IVIG went pretty smooth. I clotted once or twice and it stopped or alarmed the IV pump. I don’t feel any side effects from the IVIG yet but it’s only been a couple hours since we finished. I was just a little light-headed. The new heart pill is making me more sluggish and my vision seems weirder for now but that should get better as I get used to them. I hope these infusion for my Immunodeficiency will start to make me feel a little bit better.

I will be getting IVIG infusions every 4 weeks for 6 months and then we will see if I need to increase the frequency, continue them or stop them. Next up will be my Ketamine infusion at UC Davis. I only slept maybe an hour last night so I am heading to lay in bed and see if I can fall asleep for a while. I hope all of my fellow chronic illness warriors are having a nice Saturday. Find a reason to smile today no matter how much you may be going through.


Neuro Flare – Vertigo, Tipsy, Off-Balance, Tachy, Brady, POTS, Candida…

15 Feb



Neuro Flare – Vertigo, Tipsy, Off-Balance, Tachy, Brady, POTS, Candida, Insomnia…

First off … Happy Valentines Day to all of those who are lucky enough to have someone in your life who cares for you and you found love.

My Valentines was a rough one. First it started with my old friend insomnia keeping me up all night and all month nearly. Many people use the word ‘insomnia’ to describe staying up one hour past bed their bed time but to us true sufferers it means we stay up for days with little to no sleep at all. I couldn’t take staring at the ceiling in bed anymore so I got up and laid in my chair watching NCIS reruns all day. Then the tremors started getting worse.

I put on my PulseOX and my heart numbers fluctuated between 100’s (tachycardia) and shot down to the 50’s (bradycardia) within 2 seconds then back up/down and repeat. This is common when suffering from Postural Orthostatic Tachycardia Syndrome (POTS) which I have been DX’d with. My Oxygen levels went from 98% (normal) and went down to 89% (bad) just reaching for the remote and stayed at 89% setting the alarm off. I wasn’t too short of breath though.

More towards the evening the Neuro problems started to get worse then usual. I felt as if I was on a boat in choppy waters. I would stand up and look like I was starting a new dance craze. The best way to describe how I was walking is like a really drunk person in a wet suit with flippers on indoors. I’m sure it looked funny but it wasn’t fun. Vertigo set in so my depth perception was off and I was really dizzy, tipsy, off-balance and had all three types of vertigo at once; pseudovertigo, subjective and objective.

“There are three types of vertigo. The first is known as objectiveand describes when the patient has the sensation that objects in the environment are moving; the second is known as subjectiveand refers to when the patient feels as if he or she is moving, and the third is known as pseudovertigo,an intensive sensation of rotation inside the patient’s head.”

My usual “stone man” set in about 6pm as I have describe this before in an earlier blog post. To keep it short I feel like I turn to stone or rust up and can’t move in severe pain. It happens like clock work every night. The only thing that takes the edge off is my pain killers and time. My stomach started to ache about this time and I had sharp pains and bubble guts. It was more of a Candida issue and not the pain of C-diff which I had last year. Won’t go into detail on that or TMI. ha ha

Here it is 1 AM and things are finally starting to settle. I still feel very tachy in my chest and in my nerves. I truly believe stopping antibiotics has allowed Lyme and coinfections like my Babesia to thrive again. I will be starting a schedule to go back on antibiotics soon, I just don’t want that C-Diff or Candida outbreak again so a lot of probiotics it is. I think this proves that my Lyme disease and coinfections are very real and still active after 2 years of aggressive antibiotics treatment, injections, Picc … etc which the CDC (not a fan) says Lyme is cured with up to 10 days of antibiotic treatment (lies).

Not complaining in this post really I just like to share my real experiences and my daily life  to help others and answer questions. I am at peace with all my illnesses and I am an optimist who just wants to spread awareness. Hope everyone had a better day/night and that your lyme/chronic illness healing journey is going well. Take care for now…






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