Tag Archives: POTS

I Collapsed & Hit My Head & C-Spine 

17 Mar

  

(Not me in picture, stock photo) 

Over a week ago I was doing my routine when I am able to leave my house or have energy and went to mail a letter down the street and grab a steak sandwich at the deli on the first floor of my apartment. My heart has been acting up and my POTS. I walked maybe a half block to the mailbox. I arrived at the deli/store and ordered my usual sandwich the lady makes for me when I can’t cook my own food. All of the sudden I felt cold sweat, tingling in my arms so I sat on the ground. My arms got really numb, sweat turned hot, legs were tingling, & started to get tunnel vision. People walking by said “you don’t look good are you okay” but I couldn’t really answer them or make a sentence. 

I laid down on the dirty floor for a minute because with my POTS sitting doesn’t help I need to be in the fetal position. The lady said I looked “dead” so I looked into my phone camera and I was pale white with no color at all and black under my eyes I did look like a corpse. After 15 minutes my sandwich was ready and I felt just a bit better. I stood up to pay for my food and handed the lady a $20 (I hope) next thing I remember I heard a loud “THUMP”, and heard a lady screaming “omg I call 911 you not okay” and I woke up a minute later with candy laying all over me and my head against the wall and body flat on the floor. Clerk said I hit my head and neck on the fall when I passed out. 

There was a time where I used to set off my PulseOx alarm daily and would pass out every time I stood up when I lived with my parents so I’m used to this. But normally I would fall on carpet or catch myself before I collapsed fully. This time I hit full on into metal, glass and tile flooring. My neck was killing me after the fall and is still sore. I have many ruptured discs, bulging discs in my neck. My neuro surgeon warned me never ever go on roller coaster, horseback , jet skis…..anything where I can jar my neck because I’m close to being paralysed or a quadrapelgic if I hit my neck just right. I have spinal stenosis, DDD, pinched nerves, disc issues, cysts, my spine is messed up from top to bottom and my spinal cord is being squeezed. So I was lucky I didn’t hurt myself too bad. 

I refused to ambulance because the ER wouldn’t have taken care of me and just sent me home like always. They always say my temp & vitals are the worst they ever seen but then send me home after one bad of saline even though I tell them I don’t feel any better and need to stay. After the hit I might have got another concussion because I slept for three days. My CFS was worse so I’m sleeping 16 hour days and not eating much. I have nobody to take care of me but myself right now and I’m not getting IVIG anymore. Everything is going wrong like my usual luck. I’m waiting for better days or for life to be nice to me. 

As far as my Lyme I’m taking antibiotics and starting back on Mepron for Babesia. My Lyme has been flaring and with my auto-immune and other issues I do feel like I’m dying again. I’m relaxing and resting on the couch all I can and watching tv. I don’t leave the house unless it’s for laundry or quick groceries. I hope my girl stops with the cold feet and will help me out soon. 
Hope you all are hanging in there! Let’s try to keep hope alive 

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.

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Visit To The ER (Hospital)

13 Nov

image

Visit To The ER

Monday evening I was feeling very weird and knew something was different. Earlier during the weekend I had passed out for 4 hours and was unconscious and sweating bad. I kept having more fever, chills and neuro issues than usual Monday so I asked my mom to take me to the ER.

We got to the ER and they were actually nice this time and helpful. This time I had “30 year chronic lyme” written in my medical documents from my PCP. They immediately gave me a lot of blood work, took an x-ray of my chest, EKG, CT scan of my brain and IV fluids with meds. I was given (2) 1000 ml IV saline bags and Tylenol since I had already taken 5 Norco and have my Butrans 15 mcg pain patch on. I had a fever of 100 but I always run a low temp of 96 so I never usually go up to 100 unless I have the flu…etc.

I laid in the bed in and out of sleep, I could not keep my eyes open even when the doctors and nurses were talking to me. I felt as though I was in a bad dream and nothing was real. I didn’t even feel the needle they stuck in my arm. I was having nausea too so they gave me something for it but I didn’t see what it was this time.

Tuesday morning around 3:30 am the doctor (who was really nice) came in and said all my blood work was fine and my heart and brain look okay. His diagnoses was a lyme/chronic fatigue flare up with severe dehydration. I have chronic dehydration so I am dehydrated daily but I had been drinking plenty of water before hand, I guess my electrolytes were too low. With POTS I guess I better eat more salt and drink more Gatorade.

I was given the opportunity to be admitted but the doctor said he didn’t really know what else he could do to help with CFS and lyme so I went home. The good part was they told me I can come back now anytime I need fluids or feel bad. Last time I went they told me not to come back and just to see my regular PCP because they didn’t believe I had lyme since it wasn’t in my records. I will most likely get a standing order for a home nurse to give me IV fluids as I need them.

I am feeling a little better but still smiling. Keep fighting all you fellow chronic illness warriors and never give up.

 

 

 

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Quick Update – Could Not Walk, Wheelchair Soon

23 Mar

invacare-wheelchair-1

 

Quick Update – Could Not Walk Wheelchair Soon

The last month has been one of the worst for me. I feel like what little progress I made in 2 years has relapsed. My spine and neuro symptoms are getting worse. I will be seeing a new LLNP/GP next week for more MRI’s on my spine and hip. Still a lot of severe pain all over and down my spine so I will be looking for something stronger than Dilaudid and Norco like maybe Fentanyl patches. I have already tried every pain killer known except for Tapentadol which seems just like what I already take. Tired of crying myself to sleep. Some of the pain is non-lyme old injuries.

Tonight I was trying to get up and walk and my brain and eyes were looking forward yet my body would not move or I would walk backwards. It was very strange to have my body and brain not on the same page. I could take steps but very short and my legs were like noodles. I started to slur my speech and talk very slow (which is not unusual). It just seems more frequent now like maybe my spinal stenosis is choking my spine finally, my neuro is worse from lyme or my old lower back injuries are doing damage.

For months now I use the walls and counter tops to hold me up as I walk. I have hyper POTS so I also faint or black out a lot. I am a “fall risk” and I feel a walker is not enough support so I would like a wheelchair. I have been doing my best to avoid a wheelchair but I think it’s time to get one for those bad days. I was already bedridden 2 years ago and could barely walk before starting treatment.

With so many medical issues (fibro, pots, lyme, lupus, spinal stenosis, c-spine herniated discs…etc) it is hard to say if this is 100% lyme related. I do believe that the lyme caused my herniated discs in my c-spine. I know a lot of my neuro issues like turrets twitches in my head, tremors, unsteady balance…are lyme and TBD related.

It’s scary to know that the rest of my life could be in a wheelchair especially if my stenosis and spine get worse but I am still at peace with all my illnesses and I will push on with a smile and continue to support others. It’s not the end of my life, it’s just a new beginning and new challenges. I want you to fight this disease with me and never let it define you or make you want to give up. Keep up the fight fellow warriors and hold your head up high.

 

– Hope you find a reason to smile each day. Take care for now….

 

 

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

15 Feb

slip-man-hi

 

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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You Think You May Have Lyme Disease – Now What Do You Do?

12 Apr

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MRI Results and POTS – Caused by Lyme?

7 Mar

 

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