Friday, December 13, 2013

POTS and sensitivites to smells

Hi everyone

The last few days have been really difficult for me. I had a really bad reaction after sitting in the doctor's office next to a woman the other day who was wearing perfume. Her perfume was so over powering and sweet that it made me physically sick. There weren't any other seats to move to either. I felt myself getting hot, sweaty, sick to my stomach, and I felt "tachy"---it was horrible. The technician called the women in the back and after 20 minutes or so I began feeling better and the symptoms subsided.

I was fine until we had lunch. My daughter and I were driving home in the car when I got very sick again and had to pull over 3 times. It's really weird to me that perfume triggered this entire POTSie episode but it did. I'm not sure why it did and so I decided to do a little bit of research.

In researching I discovered that it is believed that many illnesses including POTS is believed to be caused by a "Multiple Chemical Sensitivity". They say that people who are more emotionally charged and super sensitive are more likely to have these reactions.

The symptoms of MCS are:
  •  feeling tired
  • "brain fog" (short-term memory problems
  • difficulty concentrating)
  • muscle pain
Some of the major complaints are--
  • depression
  • neurological conditions
  • orthostatic intolerance
  • sleep disorders
  • high blood pressure
  • autoimmune problems
  • cancer
Other symptoms patients have attributed to MCS include
  • difficulty breathing
  • pains in the throat, chest, or abdominal region
  • asthma
  • skin irritation,hives
  • headaches
  • neurological symptoms (nerve pain, pins and needles feelings, weakness, trembling, restless leg syndrome, etc.)
  • tendonitis
  • seizures
  • visual disturbances (blurring, halo effect, inability to focus)
  • extreme anxiety, panic and/or anger, sleep disturbance
  • suppression of immune system
  • digestive difficulties, nausea, indigestion/heartburn, vomiting, diarrhea,
  • joint pains
  • vertigo/dizziness
  • abnormally acute sense of smell (hypersomnia)
  • sensitivity to natural plant fragrance or natural pine terpenes
  • insomnia
  • dry mouth, dry eyes
  • an overactive bladder

I haven't found much on the internet about this but plan to ask my POTS specialist when I see him in January. I often have issues with smells and have done away with all chemicals and cleaning products in my house. I make my own rug cleaner using baking soda, vinegar, peroxide, clear dish soap and a touch of fabric softener. I use mild soap or no scented cleaning supplies etc...
I've heard others with POTS say that chemicals bother them as well and I'm curious "how" it affects them. (For me I get weak, tachy, nauseous and feel like I will faint. It basically incapacitates me.

Wednesday, December 11, 2013

A Pot's Headache

Hi everyone--I haven't made a post in a long time. My Mom used to say if you don't have anything good to say than just don't say nothing at all. My daughter was suffering from severe unbearable debilitating headaches along with hyperacusis for a little over one year. I had taken her from specialist to specialist but no one knew what was causing them nor how to help her. She was suffering uncontrollable and it was just so sad because nothing helped.

Going through this struggle it felt like we were virtually alone and going up a river without an oar. My daughter had pain 24/7 and she was so depressed from being in pain that she felt afraid she would have to live the rest of her life like this, and to tell you the truth I worried for her as well.

We were on our third neurologist (a POTS specialist). He took a history and it was determined that the headaches were being caused by POTS. They were in the occipital region and she had pain across her shoulders as well. The headaches were being caused by the very drugs that were supposed to help her---TRAMADOL and Advil!!

To make a long story short he sent us to yet another doctor....which the wait was 5 months later!! My daughter couldn't wait another 5 months. I know if I didn't intervene she wouldn't be here today. I slowly weaned her off of these meds. It was risky but I felt like it was worth it at this point. By August we began to see changes. The headaches decreased and her ear pain/sensitivities, the hyperacusis were almost gone.

When I said this kid suffered it is not an understatement. The head pain would literally throw her to her knees screaming in pain. And the hyperacusis wasn't much better. We watched TV on mute and she'd wrap a blanket around her head to escape the pain of the life around her. I couldn't chew my food or do anything that might make a little noise. She was like the bionic women hearing even minuet sounds. It was excruciating. 

It's been 4 months since this happened. My daughter is off of all Tramadol and Advil. This has definitely changed my opinions of doctors. I used to think they knew everything and listened to everything they had to say. Not anymore though...I have become an advocate for my daughter. I question what they say and if we don't feel it's right for my daughter we don't do it. If the doctor doesn't like it then we change doctor and find someone who will listen. My daughter went through unnecessary debilitating pain. I almost lost my daughter due to this pain and it has definitely changed the way I will handle things from here on out.

I've said this many times,YOU know your child best and YOU know your body better than anyone. If something doesn't feel right then see someone else. Don't take no for an answer. You have to be your own advocate when it comes to POTS and EDS.  I hope none of you have to suffer like she did. I still get so emotional when I talk about this, it breaks my heart.

Thank God he lead us to the right doctor and I was able to help my daughter.  

Thursday, October 10, 2013

Support Everyone Who Struggles

I know this blog has been dedicated specifically to POTS and Ehlers Danlos but yesterday I got a really sweet email from Cameron Von St. James. He was thrown into the role of caregiver when his wife, Heather, was diagnosed with a very rare and deadly form of cancer called mesothelioma.
It happened just three months after the birth of their only child.  They were initially told that Heather could have less than 15 months to live, but she was able to defy the odds and eventually beat the cancer. Heather has now made it her mission to raise awareness and hope for people experiencing hard times. This video could really help to enlighten ANYONE who is suffering whether it is with cancer,or rare illnesses such as POTS and EDS,or you are suffering today with gastroparesis,back pain,chiari or any other affliction.
Please take a moment and view her video by clicking on the link below---
Just goes to show no one knows when it's our time. Doctors can give a death sentence but if the good man upstairs isn't ready for us he's going to prove those doctors all wrong. And lucky for Heather he did just that!!
Stay well Heather and congrats for beating cancer!!


Wednesday, May 22, 2013

Congratulations 2013 Graduates

I just wanted to write something for our POTSie and EDS friends who are graduating this year. I know first hand what a struggle it can be and what you all went through or are going through to get there.

Please know we understand your struggle and know it's rough trying to stay in school or do Home and Hospital. We know it's difficult concentrating on studies when your mind and body is feeling so lousy and terrible.  Or maybe your mind is having troubles concentrating.
I just want to say congratulations!!

My daughter has put college on hold due to cognitive issues and just being so sick. Don't feel badly about yourself if you have to do the same. Like I tell her it will all work out and be patient with yourself. You don't have to keep up with the friends and things will work out. Just be patient with yourself.
Graduation With A Major Illness
By: Mary Prado
Kindergarten through senior year
Funny and silly memories bringing me good cheer
Schoolbooks and all the years gone by
Yes it wasn't always easy, I say this with a sigh
Illness clouded those memories and I surely missed allot of the fun
But there was always someone there to say, "it will be okay hon"
There were many absences and long hospital stays
And of course,this was usually to my dismay

My future dreams have been put on hold
I "am" strong like a soldier and I will fight like I am told
I wish time could start over and my illness could just go away
Do you know fear of not graduating, almost got in the way

This day means more than anything to my family and me
All the blood,sweat and tears from all three
To go through so much strife, struggle and say
Yes, today is MY graduation day.
Happy Graduation Day
to our 2013 Graduates!!!

Friday, May 17, 2013

Hiccups and EDS--A real remedy

A hiccup to some people is exactly that "just a hiccup". However, my daughter suffers from Ehlers Danlos Syndrome and a hiccup causes her body a violent reaction.

Her body fights back and it causes her body to dislocate. Shoulders begin popping out,ribs side in and out as they sublux and a "simple hiccup" becomes quite painful.

We tried every single remedy out there from drinking upside down,taking a spoonful or two of sugar,drinking lots of water,holding the breath but nothing worked. Until now that is...

I believe my daughter and I may have stumbled on a remedy. If you suffer from hiccups and have EDS or even if you don't the next time you get hiccups reach for a bottle of white distilled vinegar!   
Yep,you heard me right.
Take 1-2 tablespoons and the hiccups will disappear. (Try one tablespoon first. My daughter usually only needs the 1 tablespoon that's how effective it is.) We carry a tiny jar in the car and in my purse when we go out for emergencies. Trust me this will stop the hiccups and has  prevented her a full blown EDS attack. It's no fun watching your child have dislocation after dislocation. So,I hope this remedy solution helps one of you too.

Perhaps it's the taste of the vinegar, I'm not sure all I know is it works and it saved my daughter a ton of discomfort and trips to the ER from dislocations. I wanted to also say my daughter has BIG stomach issues and gerd too yet the vinegar did not gave her any problems or after effects. (We were concerned about this--and you may be too).

Thursday, May 16, 2013

POTS and Chest Pain

Recently we were in my Neurologist's office. We were discussing POTS and chest pain. He was asking my daughter if she got chest pains and she wasn't sure how to address it since she wasn't sure if it was true chest pains or if it was esophageal/GI chest pain she'd been experiencing for the past year.

It's really difficult when you have multiple system involved to know "where" the problem is originating from sometimes. So the neurologist explained to her if it's POTS related it would only hurt if you were standing. This was a really helpful piece of information for us as we sometimes thought they were cardiac spasms. However now with the help of a recent EKG and her doctor's  explanation we now know they are due to GI issues.

He said the cause of chest pain in POTS can occur  because increased heart rate increases myocardial oxygen demand. Here is a really good blog post regarding this same issue and I thought it was worth posting,please take a look .

It's important that you follow through on the chest pains and figure out "where" they are coming from and what exactly is causing YOUR pain. We are now taking my daughter for all the appropriate GI testing (IE..endoscopic,emptying study swallowing study etc...) GI issues can also be affected by both POTS or Ehlers Danlos Syndrome so it's really important to follow through on these issues.

Good Luck and I hope this helped.

Tuesday, May 14, 2013

DIsabilities Expo in Maryland

Hi everyone!

If you live in Maryland and are disabled due to POTS,EDS or even another chronic illness or you are a caregiver for someone who is disabled there is a BIG Disabilities Expo at the Timonium Fairgrounds
Friday, May 17th & Saturday, May 18th, 2013
Friday: 9:00am - 4:00pm
Saturday: 11:00am - 4:00pm

2200 York Rd.
Timonium, MD 21093

Here is the link

If you click on the above link it will open and on the left hand side of the page you will see free pass. Click on it and a page will open where you can print out either one of a page of four free passes.

I have never been but it may be worth a trip to see what's available for those of us with POTS and EDS.