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Perspective

Europe Trip 2015

Hey Guys!

Sorry I have been so MIA things have been going extremely well and exciting. Looking forward to sharing the past few months with you.

As I mentioned, in my last few post’s I was working with a acupuncturist and hypnotherapist as well as a chiropractor to get my body balanced and back on track before flying! I also paid my rheumatologist and cardiologist a visit before leaving for Europe to get the final go ahead. I have been wonderfully healthy and completely on track! Still having fatigue and pain when I get my period but NOTHING like the POTs symptoms I would get a year ago!

Leaving for my trip I was very nervous and just worried about leaving my team of medical professional back here in the US. My cardiologist gave me everything I needed “just in case” I have any major heart tacarcadia situations over seas. He also provided me a list of Doctors in Switzerland and Italy. That gave me major relief and peace of mind.

On to the trip, flying that far was nerveracking but worth it. My husband and I kept ourselves busy by watching the entire 2 first seasons of Ray Donavon! We are hooked and it was the perfect thing to do to keep my mind busy! With my doctors advice we spit the trip up and had a layover in Canada and then off to Geneva from Canada for another 7 hour flight or so. I had my compression stockings and did wear those for the second leg of the flight to Geneva. We landed and everything was wonderful! I felt great and we were so excited to check into our hotel. Geneva was amazingly beautiful, clean and peaceful! The shopping was amazing and Lake Geneva was surrounded by amazing castles and stunning homes. We loved the first few days there!

Geneva

After spending time in Geneva we took our car on a road trip up to the Swiss Alpes to Zermatt. I think this was my favorite place we visited the whole 2 weeks we were in Europe. It was truly stunning and such a beautiful, fun town. Seeing the Matterhorn was spectacular and way better then the Disneyland verison…hahahah! Our hotel was AMAZING! Or room overlooked all of Zermatt, the mountains and the town. Our room was as if we were in a little glass box! Windows surrounded us and the view was beautiful!

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After going to Zermatt we continued our adventures to Montreux, it was absolutely stunning and so was our stay at the Fairmont Le Montreux Palace. One of the most amazing hotels we have ever stayed in! In Montreux we visited the chillon castle and walked all along the lake enjoying the town, food and wine!

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From Montreux we finally made it to Italy- Venice, Florence/Tuscany, Cinque Terre and Rome. All together Italy was absolutely amazing. The food was to die for! Our whole trip consisted of walking, eating, sightseeing and more eating… It is hard to pick a favorite place in Italy because all of them were so wonderful. We dream about going back and spending weeks just in Italy exploring. Never enough time to see everything on vacation…I keep wanting to pick which city in Italy was my favorite but all of them were so fun and exciting I cant seem to choose..

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IMG_5375We made it back safe and all in one piece with so many memories together that we will cherish forever.

Recovering from heat stroke and eventually ending up with Pots has been tone of the most life changing events in my life. I have learned to not take anything for granted, material stuff doesn’t mean everything, and being healthy and having someone to spend my life adventures with it truly the only thing that matters. I can honestly say I live my life now not in fear (well sometimes, if you ask Tyler) but to take more chances, go on more adventures, do what I want to do, don’t let people or work stress you out to much! You only live once and you never know what twists and turns your life will take. For all my potsie friends still recovering, know you will get better and you can do anything you train your mind and body to do!

 

 

 

 

Perspective

Update July 2015

Lots of fun and exciting stuff going on these past few weeks.

First off, my new business Polished Staging is officially up and running, we have been so busy and have made some wonderful contacts. Staged 2 homes in 2 weeks and they both sold the first day on the market, one highest price in the neighborhood and one with 6 offers! This makes the blood, sweat and tears totally worth it! Not to mention we have so many brokers calling to want us to stage their listings. We feel so happy and blessed! 

Personally,  my health has been great! Working out and pushing myself again has been wonderful. I started with my trainer Marisol and now picked up Orange Theory! First few classes have been a struggle and I became dehydrated and blood pressure dropped but I’m staying extra hydrated and increased my salt intake…even doing a dreaded glass of salt water after working out… but whatever works right! 

Acupuncture has still been working wonders! Loving my appointments with life coaching and acupuncture. My coach has been such a great person to talk with and come up with positive life plans and goals. It seems to keep me balanced and relaxed! 

Hypnotherapy has come to an end and I have to say the overall experience has been worth it! I fly in a few weeks so we will how much it has helped with my anxiety. 

Over all Ive been keeping up with my workouts and haven’t had any major set backs! Knock on wood! 

So happy to be back! 

Perspective

4th weekend 2015!

So excited to share all my mast cell blood work came back negative! very grateful. I assumed it would considering I was back to normal after a week of weird symptoms.

Hope everyone have a great 4th! My family came to town to visit with us we had a wonderful time! Last year I could barely function. I was so sick still and couldn’t handle anything especially the heat, the sun, foods, you name it I couldn’t handle it.

This year was awesome, I went to an early morning parade in my neighborhood, drank a little wine at the pool in the heat and sun with some of our neighborhood friends, (with a million glasses of water of course) and ate BBQ. (I even had gluten and a little cheese).I didn’t even think about being “sick” or any symptoms. It was great to feel back to normal… 

In the recent months I have been trying to get my business Polished Staging off the ground. It has been wonderful and such a success so far! My business partners and I set everything up, got our inventory and have a warehouse full of furniture. Our current project is a 4300 sq ft. home in a beautiful gated community! I can’t wait to post before and after photos! It has been such an amazing and fun learning experience and I am so blessed to be able to own my own businesses. Hard work does pay off!

In the coming months and weeks I am working hard to stay fit, stay healthy and strong and kick some ass in the business world! I can’t stress enough following your passion in key to a healthy life!

2 months until we travel to Europe for our huge vacation and I seriously am so excited! Every city and hotel is seriously my dream! Looking forward to sharing my experience with you!

 

 

Perspective

6/24 week

Hey Guys, 

Had a great weekend and feeling back to normal again! yay! Been pushing myself way to hard with running and working out (trying to get back in shape!). Blood pressure and heart rate has been low, per my usual but trying to listen to my body and rest when needed. 

This weekend, Tyler and I had a much needed date day in La Jolla. It was beautiful! Love our day dates! 

daydate!

As far as my updates still waiting on 2 more tests for mast cell, as of now all test have come back negative! yay. Looks like I may have been having some sort of extreme heart burn or indigestion.. who knows… always something right…

I have been chatting with Dr. Treyzon and a few more of my specialists and they made sure to remind me to not pursue the route of Lyme, all my tests were clearly negative (3- including the most accurate one by Igenex) and there is absolutely no need to be chasing a ghost…They all had to remind me that I am better and that doesn’t just happen if a bacterial infection or lyme is present. 

I am still working with my amazing life coach an acupuncturist Courtney O’Brien, she has been guiding me and helping me understand how to move forward and not live in fear about going backwards. We have had some amazing progress and I absolutely would recommend acupuncture and any therapy or coaching to anyone who has suffered an extreme health related illness or trama.

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Heat is still a huge deal for me, but I am managing and making sure I stay extra hydrated and and cool throughout the day.

On a positive note my new business is getting off the ground and I couldn’t be more excited! I will share more soon when everything is finalized! Big meetings today!

Thanks for all the emails, and texts!  so amazing to have such a great community of Potsies! 

 

 

 

Perspective

Update x’s 5

Okay so sorry I’ve been MIA lately! I have befriended a few more girls suffering from POTs and have been extremely down myself… Ive been chatting with my new friends and dealing with more of my own issues! nooooooooo!!!! 5 months doing amazing then had a minor set back and a few bumps in the road the past few weeks…. Here’s my update. 

My hubby and I finally planned an awesome trip for this year September. 2 weeks in Europe-Switzerland and Italy…(My dream). I keep telling myself no matter what I WILL make this trip happen! so that the exciting good news! 

Bad news is a few weeks back after my wine tasting weekend I stated getting a swollen/hard to swallow feeling in my throat. Kinda started freaking me out, was coming and going but mostly happening after eating then started happening all the time… My lifesaver Dr. Treyzon, GI specialist told me to head to an allergist in my area asap. (since he works in LA, 3 hours away from me). I went to the allergist to make sure I wasn’t having any crazy reaction to anything and did some scratch testing to make sure. (Picture below). Everything came back normal but I did get new info on possibly having Mast Cell Disorder. A week later I went to Cedars for a visit with Dr. Treyzon and he recommended I see and ENT real quick to make sure my throat wasn’t really closing up. The ENT scoped my throat in the  office within 10 mins and said I was only 20% swollen (normal) could have been from any environmental allergy? who knows, but nothing dangerous or anything she could think of but she did prescribe an Epipen to be safe! -makes me feel better.. 

4 hours at the doctor yesterday figuring out my allergies. #nofun at least I also was able to get acupuncture. Allergy test revealed I do not have anaphylaxis to any foods. They did find I am EXTREMELY allergic to cats.  (which I kinda already knew) catch my story on my blog later this afternoon. {web address in profile} #allergies #allergic #sandiegoliving #sandiegoblogger #instagood #follow #followme #photooftheday #happy #tagforlikes #sandiegoblogger #scrippshealth

I am going Friday for more blood work to rule out mast cell. My GI specialist says it is rare and he does not think that is the case but we will test anyways…Crossing my fingers Im just having reflex  or something simple…. I just feel like it never ends….

(I also wanted to mention on a side note-I love support groups but a few I am part of have been making me even more anxious then I need to be. Everyone is so quick to instill fear and worry in others because of their own experiences I sometimes think its to overwhelming. Pick and choose carefully fear it not helping anyone).

Speaking of support groups, I am part of a lyme disease support group because of my mother-in-law and because I have been through the Igenex testing myself. Up until this point I have been under the impression that my lyme panel was negative-(Read by 3 doctors)..then on the lyme “support” page another member posted her results, which happened to be identical to mine with comments saying the person had lyme… I made an appointment with a LLMD and went to see her yesterday. Turns out my results are inconclusive (But also negative by standards, which I am still trying to figure out what this means…). I will be doing more testing for co-infections, bacterial infections and mold infections. I am thinking about taking natural supplements just in case I need to kill off anything in my body that shouldn’t be there… but I need more information so I guess, we will see what happens next…

During all this my stress levels have been through the roof and finding a way to meditate and just think clear has been difficult. I decided to start working on myself and see a life coach, acupuncturist and hypnotherapist. I am absolutely loving my acupuncture! It has been helping me destress and stay calm! (and my insurance covers it!) Life coaching has been an awesome way to start looking a my future in a more positive way, learning how to overcome my fears and anxiety of “going backwards”. 

I have to say Hypnotherapy has been wonderful as well! If you are willing to try it, be sure to have an extremely open mind, and ready & willing to change! Lucky for me I get to see one of CA’s best hypnotherapists. She is working me on anxiety and fears of the “what ifs” of my life & my visions of living more positive. She is also helping me over-come my fear of flying, this way  I will be able to enjoye the long flight over seas for our next big adventure! 

Like I said, I feel like it never ends and you need to fight everyday to feel good. When I’m good, I’m great and when I’m not feeling good, I’m really not feeling good…(I actually kinda laugh to myself when people complain about feeling sick or off….if they only really knew what we POTSIES deal with on a daily basis)…I just hope I can get a definite answer to figure out what the hell happened to me and what I need to do to move forward in life…I just hope I can stop searching soon,  as I feel like Im chasing a ghost. Hoping my doctors hang in there with me too and don’t give up…Its hard to constantly feel like your annoying doctors on a daily basis… being persistent and strong is hard! but you just gotta keep on keepin on….

Perspective

How comfortable is to comfortable?

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These past two weeks have been crazy busy! I have become almost myself again, minus my fear which I am still working on. 🙁

On memorial day weekend Tyler and I stayed home, and attended the memorial day party at our neighborhood park! It was catered by Phil’s BBQ. Delicious but I’m not sure the BBQ sauce was gluten free….(Funny, I was actually called out by another neighbor that I wasn’t sticking to my “diet”, funny thing is, not sure if he ever even read my blog or even know what kind of “diet” I follow..). Hello people its not a diet, its a lifestyle…. Gluten and Dairy free…. plus I only ate the tri-tip and chicken. well….I also had a bite of coleslaw and beans, bit nothing crazy. I mean I can’t be perfect with my diet all the time… which brings me to a very good point, how comfortable is to comfortable? Now that I am healing back to normal and somewhat better I’ve been sliding on my diet…. and boy have I felt the difference. 

This past weekend I hosted my family at my house for the balloon and wine festival out in Temecula. I had wine, broke my diet (ate bread with dinner) and was in the sun a majority of the day. I developed a heat rash and had to leave the balloon festival early. Once we left the balloon festival, we made our way to a few indoor wineries and had a delicious dinner. Everything was fine until the next morning at breakfast. (Sunday). I had half a cup of decaf coffee with  almond milk and the feeling like my throat was closing up suddenly happened all over again….haven’t had that since Oct 2014…. It stuck with me throughout the day and got better at night. Now Monday, I had my normal diet, green smoothie for breakfast and veggie soup for lunch and within an hour of eating I have the throat swelling feeling again! what a nightmare! I just put a call into my GI doctor and will be having a phone appointment soon. 

This all brings me back to a point of knowing when and when not to push myself. I can’t help but realize that everything I do needs to be modified for my “new” life…. Its so annoying and hard to understand but I guess when I feel good in order to stay that way I need to stay 100% on track. 

Not pushing myself is the hardest thing ever….

 

Perspective

Overview POTs Syndrome

Hey Guys!

I found a few informative videos on POTs and thought I would share for an easy understanding. To read more about my specific journey and how I developed POTs read My 11 Month Journey 

I am so thankful that my syndrome is fully under control and I am no longer on medication. (5 Months from any major episodes or hospital visits!)

My blood pressure it back to normal (Low-normal but normal) and I am working my ass off to get back in shape, all well feeling extremely bloated from the amount of salt I have to eat! (I am finally starting to actually like salt, and let me tell you, that has been a challenge in itself!). I am still extremely fatigued some days but seem to be able to push through and make the most out of everyday! 

Here is a longer video but I great explanation on what POTs is, hope you have 45 mins to watch! 

Here is a short and sweet overview of POTs

Dummy POTs Video, Pretty Hilarious, and the best video yet! (I am back to a normal weight and actually trying to get back in shape, go figure). LOL But this is a pretty good example of what its like to talk with most about POTs. 

Perspective

My Update from Dr. Cannom

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Happy Monday! If you haven’t seen my Instagram yet you may not know that it was my birthday!  Yay, another year! and I can already feel that 28 is going to be my year! Not only was it my birthday but it was also my 4 month follow up after my tilt table test. I met with Dr. Cannom at Cedars Sinai on Friday May 8th. We looked back at my tilt test and all my previous notes, which were pages! (I have to say, Dr. Cannom takes the most in depth notes ever!). Which I love, because if you know me, I always have a millions questions and comments.

The doctor went back over my notes regarding my tilt table test and it turns out the tilt test is actually positive! (In the hospital the resident doctor interpreted it negative). I knew it was positive!…I could feel my heart pounding out of my chest during the procedure. To be honest, I feel such a sense of relief to know that I can move on and realizing that POTs is the final diagnosis.

During my appointment with Dr. Cannom, I told him about my gluten free, dairy free diet and exercise regime. In which I have been strictly obeying for months. He believes, that exercise is a main factor in my healing. I went from wheelchair bound the first week of illness to running 2-5 miles and training with a personal trainer 2 days a week. (I am almost at 1 year later). Its amazing the progress I am having and it is even more amazing when doctors notice how much better I am getting.

We did have a long conversation about the emotional state of most patients with POTs; and how a lot of POTs patients do become depressed and somewhat give up on making a difference or pushing themselves to get better. I was one of those people in the beginning, I thought would never get better and couldn’t understand the”why me” thought constantly on my mind. It was horrible. Then I realized I was so young, had so much ahead of me and have always been a fighter who was an over-achiever.(especially in running or working out).  If someone told me I couldn’t do something I did it and did it to the best of my ability. I knew I needed to get in this frame of mind back and push! I pushed so hard and broke through and now am on my way to recovery.

Dr. Cannom is convinced that I am going to recover 100% with my attitude and very disciplined new lifestyle. I may never be able to sit in the sun on  hot summer days for hours, drink alcohol/party like I used too or run on no sleep, but I will be better and be able to live the cleanest, healthiest life possible. Life changes and everything happens for a reason. I may have some set backs and major heart tachycardia, but I will survive! I now know what to do and how to treat myself.

I am so beyond thankful for Dr. Cannom and he willingness to listen and take care of me. He made me believe I was going to get better. Thank goodness I was able become his patient!

Hopefully I continue on the path of no episodes and my next follow up with be in Aug. 3-months. We are hoping my blood pressure will stay normal and I won’t have to many set backs!

I am feeling so lucky and blessed!

 

Perspective

Division of Gastroenterology with Dr. Treyzon

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Throughout my blog post’s I’m sure most of you have noticed the amount of specialists I have seen. From San Diego to LA I have met some amazing doctors. I m lucky enough to have found a team I continue to work with at Cedars Sinai.

For about 5 months specifically before seeing doctor Treyzon, I suffered from major symptoms that left my active lifestyle nonexistent. I was in and out of the ER multiple times and sent to many specialists in the San Diego area. All the doctors I was referred to were a disaster! None these doctors were listening to me, my symptoms and the hell I was living! After dealing with the mess of trying new doctors waiting for appointments and each doctor prescribing me random antibiotics for issues they didn’t really know I had. I was left being exhausted and losing hope of figuring out what the real problem was.

I then was referred to Dr. Treyzon through another doctor (my internal medicine doctor in LA, she raved about this young, amazing GI specialist). I drove to LA with all my medical records and about 2 pages of symptoms I was experiencing for the past 5 months. He sat down with me and listened to EVERYTHING. We came up with a few recommendations for other specialists I needed to see ASAP. (which you can read more about here). Within a few days I was on my way to start testing for underlying conditions.  I have to say with the help of Dr. Treyzon I accomplished more in 4 days then I had in 5 months of being miserably sick!

During this time we have solved my GI issues, which I have been dealing with for years! I completed  an my upper endoscopy and with those results, retired my prescription antacid medication. After continuously taking it for 3 years… Thanks to Dr. Treyzon I figured out I never even needed to be on it! I have to say, I’m probably the biggest baby and scared out of my mind to take any medications, have any procedures and do anything that has the potential of making me feel any sort of pain. Dr. Treyzon and his staff made me feel so comfortable, less nervous and actually excited to figure out what was going on.

After being so sick for months prior to my appointment with him, I turned into a worry wart, borderline hypochondriac and am so so thankful for Dr. Treyzon and his staff for their continued email communication and quick responses to my crazy and frequent emails and calls! He actually himself has called to follow up with me, which is amazing! He has also saved me a few times from more pointless ER visits. I cannot express enough how amazing he is!

Here is an educational post from one of the best out there, Dr. Treyzon:

“How often should you see a doctor? It depends on whether you are feeling sick or well, and if you are interested in preventive screening. Screening is performed on non-symptomatic individuals who are at risk of developing cancer as a result of increasing age or a family history of cancer.

We recommend regular screenings for preventive health, especially for conditions of which you have a predisposition. These screenings can lead to early detection, treatment, and reduced chance of mortality. Colonoscopies and high-sensitivity fecal occult blood tests, for example, detect abnormal polyps in your digestive tract that could become cancerous. These screenings are recommended for people above age 50. If you have a family history of early colon cancer, we typically start screening 10 years before the diagnosis of the family member’s cancer. 

 In America, we typically do not screen for stomach cancer because of its relatively low prevalence. However, if you are of Asian heritage and particularly if you have a family history, it would be a good idea to get screened for H. Pylori infection, which is one of the most common causes of chronic gastritis, intestinal metaplasia, peptic ulcer, and cancer of the stomach. There is a simple breath or stool test that can detect this condition at a young age. If found early it could potentially decrease many years of chronic inflammation and therefore reduce your risk of ulcers and cancer of the stomach. 

For those who smoke, a low-dose helical computed tomography has been shown to reduce lung cancer deaths between ages 55 to 74. Mammographies screen for breast cancer and are recommended for women ages 40 to 74, especially those age 50 or older. Pap tests and human papillomavirus (HPV) testing reduce the incidence of cervical cancer. These are recommended to begin at age 21 and end at age 65. 

 A healthy diet includes fruits, vegetables, whole-grain foods, poultry, fish, and low-fat dairy products. I recommend eating less total fat, and limiting the amount of red meat, sweets, and salt consumed. Exercise is also really important. One way to think about it is to try to get at least 30 minutes of moderate exercise on four days a week.”

Leo Treyzon M.D.
Clinical Chief
Division of Gastroenterology
Cedars-Sinai Medical Center
8631 W. Third Street, #1015-E
Los Angeles, CA 90048
P 310.652.4472

 

Perspective

My 11 Month Journey

Here is my 11 month journey, as short and sweet as it can be. Please feel free to reach out Jessica@unprocessedtruth.com I would love to hear from you! 

My husband and I finally took our honeymoon 8 months after our wedding day and 7 months after buying our first home. I was so excited to spend 8 wonderful days in Kauai, and regardless of how it ended, it was one of the most amazing trips we’ve ever been on together.

 On our last day in beautiful Kauai, we decided to take a long hike along the na’pali coast in very hot, humid weather. Up until this point I thought I was used to hot, humid weather. I also have been a very active person and runner, so I honestly didn’t think much of being “too hot.” I was fine the majority of the hike, and even ran uphill for part of it. And, after about 4 miles of climbing through red mud, plowing through streams, and strolling by beautiful waterfalls, we finished our magnificent hike.

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 To reward ourselves on our last day in paradise, we decided to have a nice lunch at a sushi restaurant on the north shore. On my last bite, I felt a crazy sensation come over my entire body. It felt like a dropping sensation from my head through my stomach. I felt dizzy, lightheaded, tightness in my chest, and very shaky. I actually thought I was having an allergic reaction to something in my food. I immediately looked at Tyler and told him I was going to faint and to call 911. He took me inside the restaurant and the hostess and waiters gave me cranberry juice and another glass of water thinking I was just low on sugar or something. I started getting super hot, sweaty and uncontrollably shaky. When the ambulance arrived, they checked my vitals and confirmed that I had heat exhaustion. They informed me many tourists get it because of the heat and extreme humidity. They said I could either come with them to the hospital for an IV or head back to my hotel with a cup of water. They said I would be fine and told me to relax and drink plenty of fluids. I was convinced I would be back to normal within a few days.

 Later that day we hung out in the hotel, and I made sure to drink plenty of water and Gatorade. The next day we took a flight out of Kauai and had a layover in San Francisco. We then headed from San Francisco to San Diego, and throughout the flight I felt lightheaded, dizzy, hot and sweaty, and even had the chills; I also had a terrible, terrible migraine. We finally arrived back to SD and I felt an exhaustion that I had never felt before.  

 The next 2 days I made sure to lay low and worked from home. I thought I felt somewhat better but not back to normal by any means. On the second day home I felt a bit better and decided to take a walk around my neighborhood with a neighbor thinking exercise was what I needed. We walked 4 miles and it was hot, but nothing out of the ordinary.  

 When I got home from our walk, I had water and ate a few chips with salsa; within seconds of eating, I felt the exact same sensation as I had in Kauai. Tyler was out playing baseball, so I went over to my neighbor’s house. Within minutes, I blacked out, and she was forced to call an ambulance.

 I can’t stress enough how I really felt like I was going to die, I even called my mom and told her I loved her and my dad in case something happened to me and I didn’t make it.

 After the phone call, I remember my neighbor holding me up in the bathroom because I was so weak I couldn’t even go by myself and kept blacking out. Thank god for her! (She sure knows everything about me, lol). Lucky for me, I had 2 emergency service men and 2 firefighters show up. They got to my neighbors house within about 10 minutes of calling, although at the time, it felt like forever. My neighbor called my husband and he arrived as the ambulance was carrying me away. I was taken to the hospital where they ran all sorts of tests – blood, EKG, you name it… they couldn’t even get a IV in my veins because they kept collapsing from dehydration.  After what felt like a million tries, they sent me home (I still can’t believe they let me leave without fluids). Their explanation? I was suffering from extreme anxiety.  I didn’t believe it – I have never suffered from anxiety before and have never experienced any sort of health issue in the past.

I couldn’t sleep all night and went to my Internal medicine doctor with Scripps the very next morning. My mom came down that next day to try and help figure everything out and give my husband a break. The morning I called my Internal Medicine Doctor I told them I was in the hospital and needed to been seen. I rushed over to her office. She saw how pale and weak I was, and they ushered me in, in a wheelchair, feeling faint, weak, dizzy, cold, and shaky – I couldn’t even put sentences together. I seriously was convinced I was going to die, and no one was helping me.

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As soon as I told her what was happening, they put an IV in and after about 6 tries, they gave me a few bags of fluid. I also did an EKG and blood work, and they sent me home with antibiotics for traveler’s flu (I knew this wasn’t the problem but at least she saw I didn’t have anxiety). I followed instructions and took that for 2 days, and then went back because nothing changed. I then had an ultrasound and another EKG because my chest felt tight again; this was when I started to think my heart would just give out on me at any moment. After the EKG, my doctor said everything looked normal. I was relieved to hear that, but at the same time, I kept wondering what was happening to my body.

During that time, I was on Omeprazole for stomach acid and heartburn. I tried to stop the Omeprazonle on my own a few weeks prior, but my doctor encouraged me to continue to start on that again to see how I felt, thinking it could be a stomach acid issue flaring up again.

To not repeat myself over and over, after about 5 or 6 visits with my internal medicine doctor (accompanied with all the symptoms listed above, low blood pressure, heart palpitations, and an increase in heart rate upon standing), I was told I probably had vasovagal syncope or a problem with my vegus nerve. My doctor then referred me out to an ENT with the diagnosis of vertigo.  

Between waiting for my next appointment with the ENT and ending up in the ER a few more times, I called my OBGYN to chat with her about every possibility. We of course made sure I wasn’t pregnant and she recommended I stop taking birth control pills right away. I was on them for about 13 years with no breaks; she decided it would be wise to stop just to make sure the pills weren’t causing any of the symptoms I was experiencing.

Finally the day had come to see the ENT specialist. Upon my visit, the ENT took one look at me and said I did not have vertigo and referred me to a cardiologist.

It took about 2 more weeks to get in with cardiologist and by this point I was barely eating and still experiencing terrible symptoms. I finally met a younger professional cardiologist who basically looked at me before any testing and mentioned I may have Dysautonomia or POTs syndrome. He prescribed midodrine (a blood pressure medicine to raise blood pressure) and salt pills to help retain water and get my blood pressure back to normal (my blood pressure is usually low but at this time it was coming in around 80/50). I then did more blood work, a CT scan, 24-hour heart monitor, then a 1 week monitor, and a month monitor which all came back normal. Unfortunately, I had a bad reaction to the salt pills and ended up at urgent care, so I had to stop taking them.  

Heartmonitor
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My first cardiologist was the first doctor to diagnose me with Postural orthostatic tachycardia syndrome (POTS) a form of Dysautonomia. I completely ignored him and was in denial about accepting the diagnosis, but continued to do my own research and read online that Pots syndrome may a secondary syndrome and something bigger may be the cause.

So the search continued. I met with an Integrative specialist in Santa Monica who did her own set of blood work and found high levels of mercury in my system. She was very thorough and really wanted to help figure out what may be happening. Surprisingly, I was starting to feel a little better and thought it may simply be the whole mercury issue.  About a month later, I had a total crash and my episodes got stronger and came back full force. My Integrative Specialist referred me to Cedars Sinai with an amazing GI specialist named Dr. Leo Treyzon.

I arrived to his office with my mom (yes, adults still need their mom, and at this point I wasn’t driving anymore just in case I had an episode and blacked out while behind the wheel). I had all my medical records and an essay of everything that happened up until that point. This was the first doctor that actually sat down with me and took ALL of my symptoms into consideration. He helped refer me to the proper specialists within 48 hours. We talked for about an hour and he did a normal exam, took my blood pressure, and listened to my heart and so on. I was blown away with his ability to take in everything I was saying and look at all of my symptoms together. He discovered I had a stomach fungus and we treated that with antibiotics; he then recommended an upper endoscopy, especially since I have a long line of GI cancers in my family and was taking stomach acid pills for years. I was so stressed and worried to do the upper endo, I could barely contain myself (I don’t think I slept for a week up until the procedure). It ended up being so easy and worth it. Dr. Treyzon was able to clear 5 polyps from my stomach and now will continue to be proactive to maintain my health. He also was able to wean me off my stomach acid medication. Since our first meeting, we have continued to have e-mail appointments and phone conversations which have been lifesaving for me! A doctor that actually returns phone calls and emails?! How freaking awesome.

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Straight from Dr. Treyzon’s office, I went over to meet a very nice Neurologist. I again told her my whole life story and all my symptoms. She decided it would be best to have an MRI done the same day to rule out any sign of MS, Tumors or anything else that may be obviously seen by doing an MRI. My mom then carted me over to the radiology center to do an MRI with injected dye. If you have had this done before you will know that this is not a very pleasant procedure. My nurse at the radiology center was awesome though – such a great, fun guy! They got me set up, put my IV in, and had everything in place to do the first round of MRI photos without ink. After the first round, they pull you out of this huge donut machine and inject dye into the IV. Unfortunately, my vein burst and the dye leaked into my arm…It was so so so painful I was crying! Luckily we got enough dye in the vein to have it spread to my brain and they were able to continue to the next part of the MRI. When we finished the second part, he pulled me out and checked my arm. It was so swollen and fat,  I couldn’t believe it!  I felt so bad for the guy that was working there, I kept telling him it wasn’t his fault, and that my veins were just super small. We had to massage it and keep an eye on it for an hour or so until I was released. The next day, the Neurologist called to let me know everything looked great but she wanted us to come in for a follow up appointment. During the follow up appointment a week later she informed me I may just be getting migraines and sent me on my way with migraine medication if I felt I needed it (which I never ended up using).

My next appointment was with the Rheumatologist, Dr. Karayev. I can honestly say that he is one of the best in the biz! He was also very accommodating, listened to everything I had to say and tested me for almost every autoimmune disorder or possible underlying condition that may be associated with Dysautonomia. I think it was the most blood I had ever given at once…the nurse told me 24 vales! I had 2 juice boxes and nuts during the blood draw! All my initial blood work came back perfect. Around this time, I started getting terrible leg cramps – they were so painful I believed I might have been experiencing a blood clot. I woke up every hour and had to walk around to make sure it would go away. Dr. Karayev sent me for a leg ultrasound to make sure it wasn’t anything more to worry about. The ultrasound came back clear and he started me on a combination of co-q 10 and magnesium. Within 2 weeks, my leg cramping was almost gone. Since then I have had about 4-5 appointments, 3 major blood draws and countless e-mail and phone correspondences with Dr. Karayev. He’s confirmed that I do in fact have Dysautonomia with no underlying conditions. He has also been there to answer all of my questions and continues to refer me to specialists that deal with Dysautonomia.

Oh, and here’s a note on how important it is to seek an extra opinion in all medical conditions: After my first meeting with Dr. Karayev, he referred me to an Endocrinologist. I had a quick appointment with him, in which he didn’t really seem to know what was wrong with me or really think there was any point in me seeing him or testing my hormones. I did more blood work with him along with a 48-hour urine test. He called me about 3 weeks later just to let me know everything was normal and wished me luck.

With the help of Dr. Karayev, I met my cardiologist Dr. Cannom. (Our first meeting was only about 2 months ago). He put me through a tilt table test under the super vision of his female resident doctor. Surprisingly, the tilt was negative, but my heartbeat was still beating erratically.

Since my diet and exercise change in mid January I have not had an episode, and Dr. Cannom and I have another appointment to discuss how we will move forward. Even with the negative tilt, he is sure I am experiencing onsets of Dysautonomia but is sure I am recovering in the top tier of his patients, telling me that I might just be past the worst of it.

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With the diagnosis of Dysautonomia and no underlying conditions, I am continuing to work with a Cardiac Electrophysiologist at Cedars Sinai and an Integrative Specialist in Santa Monica. I am currently on month 11 and starting to see major changes. I still get episodes of heart tachycardia, dizziness, nauseous, headaches, brain-fog and occasional UTI infections around my cycle. However, I am learning new things that are helping and working on improving my overall wellbeing. Lucky for me, I found some amazing support groups and met some inspiring women going through the exact same thing.

Today, I am happy to report that with some setbacks, my daily life is 95% back to normal. My biggest challenge is learning to not be concerned that another episode is right around the corner and that I can live normally.

*Please keep in mind that these appointments took place over an 8-9 month period, with countless ER and other doctor appointments. I chose to only write about the major experiences and not dwell on all the negative appointments and unworthy doctors I have seen. If you are looking for answers within your situation, be persistent and push to see doctors that will help you figure it out. Everything I write about on my blog is my personal experience. I am not a medical professional, nutritionist or personal trainer but these things have helped me. Please understand that my opinion will not cure or treat anyone’s condition.  This is just stuff that happened to work for me.