Dysautonomia

Hi, my name is Kate_Mercury01. I'm here because I have PTSD from an accident & later was diagnosed with Dysautonomia

#MightyTogether #PTSD #Dysautonomia

Part 1 of 2 I know a lot more about pacemakers than I did in 2013 when I had the first one implanted. In 2022 I had a battery switched out and believed I was a professional pacemaker user. A few months ago, however, I discovered there is a lot more to this little battery pacing my heart.
For clarification, my heart is structurally sound. Dysautonomia- an umbrella term used to describe the malfunction of the autonomic nervous system- slowed the heartrate. By 2013 I was operating mostly in the low to mid 40s and felt crummy. Medication did not help, and I was diagnosed with chronotropic incompetence (basically the heart’s inability to sustain a normal heartrate). A pacemaker cannot cure dysautonomia, but it took away the bradycardia symptoms which had left me exhausted and winded.
In the last 10 years, the cardiologist and I have surmised why I have bradycardia and dysautonomia. At the age of 20, I had mononucleosis (viral infection number one). My heart started beating more slowly. I had a few medical tests run and doctors said the slow heartrate was due to allergies. I ran when I felt the heart too slow and then went to sleep, typically feeling better the next day.
In 2010, I had a string of sinus infections culminating with the flu in 2010 (viral infection number two and more). The month of December was horrendous and the day after Christmas I experienced my first of many experiences with dehydration. Again, the dysautonomia specialist believes those viral hits are what essentially “damaged” the autonomic nervous system, resulting in a myriad of symptoms and consequences.
Fast forward to August 2023. That was the month I learned of a complication of pacemakers. I had felt unwell for a couple days, and even had a horrible bike ride in which lying down did not help me recover. There was intense pain from my shoulder to my hand- I literally could not hold the bike handle and had to dangle arm (not a heart attack).
I received a phone call from a pacemaker representative that adjusts the settings. He wanted to see me as something was wrong with the pacemaker. In 10 years, I never received a call regarding the battery; I wasn’t sure anyone reviewed it.
Here is the biggest surprise _ pacemaker leads can “break.” After nearly 10 years, the coating of my one lead is coming undone. What does this mean? First, the pacemaker switched from one setting to another, which does not feel good. I passed out once and came close a second time before I knew what was occurring. The pacer can sense orthostatic intolerance I deal with (drop of blood pressure upon standing). It will then shoot my heart rate up, so I feel ok. Unfortunately, with the lead not working properly and actually pacing in both chambers instead of just the top, it doesn’t decipher these changes in my body.
To fix the situation, I am having laser lead extraction surgery at the Cleveland Clinic. I could have had it in Buffalo, but it is a complicated surgery, and the expertise is in Cleveland. It took more than two months to secure an appointment with the surgeon; it’s four months total from the time the pacer stopped working accurately until the lead is replaced. I have not biked since early August, have had to be extra careful with increased symptoms and have dealt with additional fatigue and nausea.
This is my third pacemaker surgery; the most complicated one. The surgical team uses a laser to burn and then slowly pull out the lead. If it is deemed too difficult to extricate the lead without damaging anything, the lead will stay, and I will get a new one that works. Ideally, however, it is hoped the lead can be removed and replaced.
A few months ago,  I went for a bike ride at the Buffalo waterfront believing it was any other summer morning ride. Little did I know the crazy medical detour I began. This is reminiscent to the bike rides in the summer of 2010 in which I had to hop off my bike as I felt like I was going to pass out. These bike rides were the clue that something was wrong with my body, other than an easy fix.
I am annoyed that this has happened; I never even knew of such a complication _ which occurs in one to four percent of the population. I guess I am once again the “lucky one.”
I have learned several things in the last four months including:
1. I need to bike. But walking and using an indoor bike is ok. (Putting weight on my left arm causes “noise” on the pacemaker, which is a problem).
2. My husband and family are of great support.
3. I don’t have to take the first medical opinion I receive. I have a great local cardiologist who can manage my care but for such an intricate surgery I want to be in a top-notched facility that does thousands of these surgeries.
4. Many hospitals do not perform lead extraction surgery because it is rare, the equipment is costly, and a doctor must have specialized training.
5. I am fortunate to be able to travel to Cleveland

Hi, my name is pandalivi3. I'm here because

#MightyTogether #Dysautonomia

I have been "around the block" with a variety of stuff all my life. I am 75 with hEDS, POTS, dysautonomia, MCAS, CFS/myalgic encephalopathy/ SEID, and small fiber neuropathy.

As I age , the management and science has expanded. I feel lucky that there is so much more info. However, this non itchy, nonpainful, bright red flat pinpoint rash stumps me. It is on my lower aarms and lower legs. Is it an auto immune thing or what?

SuzieKihei

Find support and inspiration in our group for people with Dynamic Challenges who refuse to let limitations hold them back from enjoying, loving and living life and the great outdoors.
#Dysautonomia #EhlersDanlosSyndrome #OccipitalNeuralgia
m.facebook.com/groups/341684588871459

Hi, my name is Hada22. I'm here because

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #OCD #Dysautonomia #MarfanSyndrome #EhlersDanlosSyndrome

Hi, my name is Deniva1234. I'm here because I’ve been recently diagnosed with Autonomic Nerve Disorder, after a bout with fainting over the past year. Oddly, once diagnosed by a cardiologist, who told me to “just eat 4000mg of salt/day, and drink 2 liters of water, and you will be fine”, my health has declined. Needless to say, I cut back on the recommended salt, drink a good amount of water, but the fatigue and general malaise remains. Restorative Sleep is definitely an issue, also. Need some suggestions, moving forward.

#MightyTogether #Dysautonomia