Today, I have accomplished the 75 percent marker of feeling better post-stroke. While stroke related issues have slowly subsided, other things have transcended back into my life. I wasn’t prepared for this, but multiform anxiety has been slowly creeping up on me. This became evident when my normal stroke fatigue at 5pm wasn’t coming around. On Wednesday, I couldn’t take a nap. I could say that’s a good sign, but it’s not. I felt a sense of abrupt doom. My heart rate was increasing, my body started trembling. I thought great, my POTs disorder is starting show back up since my body isn’t focused on stroke healing. It’s a nasty disorder. It sounds innocent when you spell it- postural orthostatic tachycardia syndrome. This means my heart rate spikes and I risk of passing out if when I get up too fast. The other part of POTs is autonomic dysfunction disorder. To give some insight on autonomic dysfunction disorder, this is an article that directly describes it from www.dysautonomiainternational.org
“Dysautonomia is an umbrella term used to describe various conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System (ANS) controls most of the essential functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye and temperature control. The ANS is made up of two branches: the Sympathetic Nervous System (SNS) and the Parasympathetic Nervous System (PNS). The SNS controls the more active "fight or flight" responses such as increasing heart rate and blood pressure.1,2 The PNS can be thought of as the "rest and digest" part of the autonomic nervous system, as it slows down the heart rate and aides in digestion.1,3,4 The endocrine and metabolic systems are involved as well"
Inherently, my body is in constant fight mode. Two years ago, I was given this diagnosis after a series of misdiagnoses from the ER and my primary care physician. I was rushed to the hospital twice for fainting and uncontrolled body movements, like a seizure. My primary care doctor pinpointed my symptoms as a panic attack. This was not a panic attack! You don’t faint, get chills, and shake uncontrollably. Now there are some aspects that would indicate a panic attack if you didn’t get the full story. The sense of doom and feeling like you are going to die. At first, I agreed with my physician’s word until I fainted at the healthcare center at work and was rushed to the hospital. The EMT said my body felt warm but I did not have a fever. They popped aspirin in my mouth as they took my EKG racing me to the nearest hospital. It was erratic. As I laid in the hospital, my heart rate kept spiking and I was spacing out. After my discharge I was sent home. I spent a month laying on the floor crying because I could not stop shaking and my heart rate was out of control. I decided on my own to see my cardiologist, since I have SVT. My doctor listened to my symptoms and said, “I am going to order a tilt table test”. I had no clue what that was, but I set my appointment the following week in their cardiology surgery center. I was hooked up to monitors for a bit while I sat in a chair for a baseline of my heart rate. I was calm, taking deep breaths. The nurse took me over to a table and strapped me in. She raised the bed up to a standing position. I was standing for 30 minutes, initially calm and listening to the nurse's talk. Suddenly vitals spiked making a horrendous beeping sound. My heart rate was up to 170. As it began to subside, and I went back to listening to the conversations again. The vitals spiked again. The nurse soothed me and told me that she was going to lower the bed to a laying position. I felt immediate relief laying down. It didn’t last long, probably 20 minutes or so. She then proceeded to raise the table again to a standing position. My vitals went haywire again. Next was the most horrendous part of the test- sublingual nitroglycerin tablet. She told me that I will begin to burn up. Within 2 minutes of dissolving I felt my body begin to burn up. My heart rate spiked high and my blood pressure was no longer able to register on the machine. The nurse called in backup as she manually took my blood pressure. The nurses watched me as I was fighting to regain control. The nurse told me that it takes a little bit, but it goes away. She tranquilly helped me get back to a peaceful mindset. She got me off the table and had me sit in the chair for the resident cardiologist to review my results. I sat for a long time. Finally, the physician walked in and said you have POTs. What? I’ve been in the medical field since I was 20 and I’ve never heard of POTs, or perhaps when I was auditing physicians, I never paid attention to that syndrome. He said that he would call up to my cardiologist to be seen the next day. So, after hearing this news and feeling sad but justified that it wasn’t in my head, I went home to process the information. The following day I met my cardiologist and he explained what POTs was and that I had a form of autonomic dysfunction disorder. Basically, my body was not communicating correctly. He told me that normally he tells his patients to avoid salt, but in my case high volume of sodium helps. He instructed me to slowly get up and be careful when I bend down. He prescribed me heart medication and recommended I see a psychiatrist about the autonomic dysfunction. I paused and asked why am I seeing a psychiatrist? This is not a psychological issue. He told me the psychiatrist can prescribe medication that can calm my body down with the fight or flight issue that the autonomic dysfunction messes with. I complied and called a psychiatrist. I lucked out and found a great doctor. It took a while, with bouts of problems where I could not come into work because I felt like was going to pass out, or I was shaking on the ground hot and crying. I believe I screamed just take me several times. My doctor prescribed different medications and we finally landed on a couple that helped. It took one year for me to fully feel normal. Sadly, this dysfunction made my metabolism go crazy. I went from 125 to 110 in three weeks during the initial phase of this issue. By the year I was down to 103 and that’s eating as much junk as I could. I had to throw out all my clothes and replace them. I had to listen to people talk about how small I was getting. I know it was out of love, but deep down, I wanted to say I know! I don’t want to be this way!
So, I go on my merry way, feeling better and planning a wedding. I felt that my whole world was finally falling into place. My only issue at this point were my daily migraines that I have suffered since I was 21 located on the back of my head near the left side. Life was grand, I went to Florida and got married. Little signs began to show up, that I didn’t think much about. As we took pictures near the ocean, my migraine became debilitating. I couldn’t enjoy the wedding celebration. While everyone was drinking and having fun, I sat outside with my parents and curled up. The following day the migraine kept creeping up. But at last, toward the final days in Florida it went away. We came back and life went on. When I went back to work, things were getting hectic, and I was in the process of changing my name and getting ready to take a certification. The labor of getting a certification was a monster since I signed up under my maiden name a long time ago and now, I have a different name. It was down to the final minute before it was approved just in time to take the test. With all this built up stress, I began my test. I saw the countdown and thought, wow I have a lot of time to answer these questions. So, I took my time and double checked my answers. When I was finished there was 8 seconds left. I was elated I finished in time. My reality came crashing as the screen showed that I had finished part 1. There were more parts! I had no clue, so I failed. For the portion I did, I got a great score. I was so upset. I cried all the way home. I felt my migraine intensify every single day. Then bam, I had my SAH stroke and ruptured aneurysm, which happened to be in the exact spot as my migraine. Correlation? I don’t know. Then the craniotomy with clip and then two weeks after my 19 day stay in the hospital, I was admitted back for hydrocephalus that needed a VP shunt. I have gone into detail about my stroke recovery, so I won’t bore you with repeated information. The reason that I bring this is up is because I feel better and stronger every single day. My body decided, it’s time for the other issue to creep back up.
So, as I stated in the beginning, I am dealing with the POTs issue and autonomic dysfunction syndrome all over again. It’s not as bad since I’m medicated, but it just doesn’t seem fair that I can’t catch a break. I know this medical issue can’t kill me, so I take solace with that piece of information. I’m just amazed how the body will push one medical issue over to focus on something else like my stroke. Once the energy isn’t needed, it’s goes back to the other state. I don’t have any science to back this theory up, but I believe my autonomic dysfunction is what saved my life when I had my stroke. My body is was in full fight mode. I should have died. I told the EMT that I had taken sleeping medication, so that the ER physicians didn’t give me a cocktail that would not fare well. The ER doctor didn’t take this issue seriously even though I said all the keywords- rubber band snap, slow talking, projectile vomiting and neck pain. They treated me for a migraine, thinking I was seeking drugs. I once again had to become an advocate for myself and tell them this isn’t a migraine. After several rounds of throwing up, they finally ordered a CT scan and that’s when they came back and told me that I had blood all over my brain and they were going to transport me downtown. I don’t remember much that transpired that night, but I do describe my journey in other blog posts. I’m still inflame that precious time was ticking, and they didn’t do the CT scan until they noticed that I wasn’t making it up and getting worse.
Another problem that started creeping up was body image issues and depression. I am perhaps overly confident on all issues but my body. Now I haven’t gained a ton of weight, but I feel different. I don’t feel small anymore which is good, but I got use to that body. I just looked in the mirror disgusted with myself. It didn’t help that my long blonde hair was gone and I’m looking at my brown hair slowly grow in. I felt like a boy. It didn’t matter how much make-up or dressed up I got, I still felt disgusting. I felt depression grow as the stroke issues shrank. Why? I get angry at myself for allowing these intrusive thoughts enter my head when I should be happy that I’m the lucky 1/3 that doesn’t have major issues and I’m alive. Hair grows out. You can work-out. Beauty is in the mind. That’s the healthy way to think, but for some reason a dark cloud was writhing on me. I had to do a reality check on myself that vanity is not a healthy look on the soul. Empowerment is more attractive. I can’t snap my fingers and say ok girl, you’ve got this. It’s a process, and that’s what I want everyone to realize. You can’t magically cross zones. It takes a lot of work but realizing is the first step. So, each day I work on this. Do I have days where it doesn’t work for me? Yes! That’s ok- there's another day to start over.
Lastly, worry. I worry excessively about everything. I worried about some things during my stroke, but my inner warrior came out because it was fight time. Now that I back to normalcy, my worry zone transitioned to many things. I blame it on being over analytical. For the entirety of my life I have analyzed all possibilities of what can happen with choices or outcomes. I thought this was a super-power of mine. I had it all figured out, but it chained me to a ball of not reaching my full potential. I exerted so much energy worrying and analyzing that I wasn’t living my life. In a work situation, I think it’s great to have because I can predict outcomes and behaviors. In general life, it’s not good. So now I sit here and worry again. I worry that I’m going to have another stroke, I’m going to fall and hit the shunt, I’m going to waste away trapped at home. So, this is another aspect of creeping up that I must work on. Luckily, I do have people who keep me in check and tell me straight to stop worrying. I probably sound a bit neurotic with this blog post, but deep down I’m sure there are some pieces that you can relate to. Maybe not to the degree of what I experience, but something might resonate. I write this because during my stroke and recovery I had such tenacity and power that it was a miracle how my mind was not going to get me down. Now that things are better, other issues pushed to the back are creeping up. I have a lot of work to do on myself with self-care. There are some things I can’t control such as stroke issues or my POTs. I have accepted this. The other facets are not permeant and can be altered. I need to use that energy that I used during my stroke to approach these other issues. I have a very strong personality- this must work for me. I leave you with this piece of advice that I’ve learned along my journey of issues. You must be your own advocate. Realization of what’s wrong and pressing forward to are paramount to any recovery. So, I leave you with this:
Trust your gut about your health. You know your body and if a doctor is not agreeing with you, seek out a specialist. I’m unsure how that works with Universal Health Care, but in the states with private insurance, I have the option to say bye to my primary and seek a specialist without a referral. I’m glad I did because I would be a shell, going nuts if my cardiologist had not discovered what was going wrong.
Don’t be afraid to speak up and become your own advocate. I’m still mad at the ER that I went to when I had my stroke. They wasted a lot of precious time, thinking that I was drug seeking. I had the worst stroke you could have- SAH. Not many people live. I’m lucky that things started to put in motion, but I had to fight for that CT scan.
As you heal, other issues, if you have them will creep back up. This is a sign that your body is regulating.
Always research for more information.
Don’t give up no matter who tells you otherwise.
Talk to someone, don’t hold it in.
Become a warrior in all aspects of life.
Take care of your mind, body and soul.
I wanted to sprinkle how other medical conditions creep up after another one subsides; I am frustrated but at the same time I happy to be alive. It’s not an issue that I wanted to welcome back, but it’s a part of me whether I like it or not. Never in a million years did I think I would encounter these issues in my 30’s. Most research points all of this for people older than me. Well, it can happen, and it doesn’t care about your age. I believe that my ruptured aneurysm was on the brink for several years and finally with enough stress, it bulged enough cause a brain bleed.
I hope anyone reading this, understands different facets of my medical journey. I hope that it’s relatable, and you become an advocate for yourself. If you continue to struggle, keep faith in yourself and always feel free to reach out to me, or a physician that you trust. Here is a helpful tool that I’ve created for myself that might work for you.
Draw two boxes
Label box one “Can’t Control”
Label box two “Can Control”
Draw a line and create a sub-box with each can’t and can of your life
Under the “Can’t Control” sub-box, write out that you accept this and why. Then branch out with ways you can adapt and be positive about this aspect. At the end, write a large box that says never defeated.
Under the “Can Control” sub-box, write out a box that says I can control, and this is how. Then branch out each way you can change your mindset and set goals. At the end, write a large box that says never defeated.
It’s a map of your life. If you get lost, you can look back to remind yourself. As life changes, those boxes may shrink or grow large, but you acknowledge it.