All posts by Luna

About Luna

Recently diagnosed 40 year old with POTS.

Three Year Update

Hi All, I just wanted to post a quick update. I wish I could say I am recovered, but just not there yet. However, I am much improved. I was a wreck, and like many of you, feared for my life. I was lucky enough to end up at Mayo Clinic where I was able to receive incredible care (even though they would not admit my illness was from botox). I have had to battle every day to rebuild my body. It’s been really hard, but I have seen improvement with time and care. Hang in there! Wishing you well.

28 Month Update

  1. Hi all just wanted to post an update. After my initial Hell I was evaluated at Mayo where they came to the conclusion I was suffering a severe dysautonomia. I was diagnosed with Pots. While some things did seem to improve (digestion, tremor, blurred vision), I still suffered with vascular tone and muscle weakness. When I stand up all the blood pools in my extremities. When I could no longer handle dragging my legs around before feeling like I was going to pass out, I had several veins in my legs ablated (EVLT). This significantly improved my tolerance for standing. I have noticed small, but slow improvements. I have also had to work full time. The first year I did not think I would make it. I am doing  better now. I continue to use massage, acupuncture, and reflexology. I take pyridostigmine and propranolol daily and exercise as much as possible. I also take collagen, pycnogenol, and wear compression gear. I keep hoping for improvements and live each day the best I can:) Best wishes.

Update…

Hi Everyone,

Just wanted to post an update here. I was diagnosed with POTS after having reconstructive surgery on my left ACL. The days that followed were a nightmare …to say the least. I had every symptom mentioned on this site on top of the recovery process of a major surgery. My pupils would not dilate (so I was pretty blind), I lost vascular tone, my heart rate was wacky, my blood pressure was wacky, ears were clogged, hair fell out, my entire body was emaciated from dehydration; my skin, mouth, and eyes were dry, my menstrual cycle stopped, and my stomach was all messed up.

I attribute all of this, including the muscle weakness that led to the destruction of my ACL to a cosmetic botox injection I received in 2013.

The good news Рwith great determination I have resolved most of these issues. Now my main struggles are dealing with the leg heaviness, cramps, and fatigue from orthostatic intolerance. This is what helped:

Mestinon (Pyridostigmine) – helps to maintain muscle strength.

Collagen Types 1 and 3 to help with hair and skin. I also switched to using henna for color.

Exercise- as much as I can tolerate- I push myself (I also have to rehabilitate my left leg because it was left an atrophied mess)

Biofeedback- To control heart rate and improve autonomic response.

Acupuncture- To improve autonomic balance and blood circulation.

Reflexology – To improve oxygen to the muscles and alleviate the heaviness in my legs.

A healthy diet

Tons of water- 3 liters a day people!

Sleep – as much as I can get- which unfortunately is not enough.

I hope you all are doing well and my best wishes for a steady healing process! Hang in there.

PS – I work full time and push myself to go to the gym in the evenings- it is not easy, but it is possible. It is sooo important to keep moving:)

 

Botox Nightmare

Hello All,

I wanted to share my story with you. Frankly, I have been so upset with what has happened to me that it is very difficult to even discuss. However, I believe that it is vitality important to share. Back in August 2013 I received 20 units of botox in my forehead. A few weeks later I experienced chest pain and difficulty breathing.I was highly concerned that it was cardiac related and proceeded to have a full cardio assessment done as hert disease runs in my family. Everything came back normal. Then I started to have extreme muscle tightness and went to my GP. At this point I really was making no connection to the botox injections. The tightness seemed to resolve on its own and for several weeks everything seemed alright. Then I started to have pain in my abdomen and went to the emergency in October thinking I was having a gall bladder attack. But blood work and ct scan with dye contrast was normal.The pain seemed to subside but I found myself needing a lot of antacids, Sprite ect. Again, these symarathons toms seemed to improve. Still….not even considering the Botox thing. Next, I started to have a strange sensation I. My armpits…like a burning and tightness. I was concerned that it was “breast” related so I scheduled a mammogram. All..normal. This was around January. Then in March I was playing volleyball and when I jumped for an approach…I completely blew out my ACL and meniscus. Initally, I just wrapped it up and scheduled to have reconstructive surgery. I was still positive and continued to go to the gym to do “prehab” exercises. Then something strange happened. I suddenly was experiencing burning pain in all my joints. I thought maybe I was having some type of reaction to something. Then, one night while I was stretching I noticed something very scary. My muscles had turned to mush….when I would lift my leg ….everything just kind of fell with gravity. I am very athletic and have completed six marathons, play competitive sand volleyball, and workout regularly. There was absolutely no reason for this to happen.I discussed with my husband whether or not we should process with the surgery, and we decided we should because I needed to have a functional leg. My surgery went OK, but the next day I realized that something was very wrong and it was not just my leg. Every muscle in my body was weak. Lifting my arms and trying to grab my crutches was an almost impossible task. I thought I was going to die. I went to the Mayo Clinic Emergency. All of my blood work and EKG came back normal, but I was significantly dehydrated. I was given fluids, potassium and stabilized. They scheduled me to see a neurologist the next day. After several tests I was diagnosed with POTS. An autonomic nervous system disorder. When I went back through my history to give to my doctor I was completely in shock of the one minor detail I had not even given consideration to…….Botox!! It is the only thing that made any sense. I now believe that it was the boyox that caused all my initial symptoms that were tormenting my body. I also believe that my body tried to protect itself with sometype of host immune response, but when I tore my leg apart it had an opportunity to spread and attach itself to new nerves leading to the mess I am in now. Very weak, trying to rehab a bad leg with terribly atrophied muscles. I am now focusing on trying to regain strength and get full range of motion in my leg so I can try to improve my health. What a mess. I am positive that I will recover, but it is going to take some well dedicated time.

 

Wishing you all the best.