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Introduction: New To Forum Not To Dinet/pots


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Hello Everyone,

I would like to introduce myself. My name is Mary and I live in Florida. I have POTS, Migraines, Raynauds (with Chilblains), and Hypothyroidism. I?m new to this forum, but not DINET. I would like to share my story with you. It is going to be a bit long because I would like to tell some of the details ? partly because this is my first time posting here and partly in case it would help anyone. I hope that?s okay? My future posts will be much shorter :)

After the birth of my baby (c-section) and appendectomy almost 5 years ago, my health started to deteriorate. I assumed I was weak from labor, the surgeries, and a new baby, but as time passed I did not get stronger. I started getting severe migraines and the severe fatigue continued (my mom who is twice my age could ?run circles? around me) I also would wake up in the mornings feeling ?train-wrecked.? Assuming I was just tired from having a baby, I began to look for alternative ways to feel better. My doctor put me on natural hormone therapy, a vitamin regimen, and ran basic blood work. I worked hard on my health but still no significant improvement resulted.

After months of no improvement and new symptoms appearing, I went to see my primary physician. Some of my new symptoms included: feet, hands, & knees were turning purple and getting painfully cold; small blood vessels busted on both feet from the ankles down; flushing; felt like I was shaking internally (almost like drinking tons of caffeine), visible tremors in my hands, standing long periods caused hands, lower legs and feet to turn red and throb; getting out of breath very easily; occasional flare-ups of joint pain and chest pains; bouts of severe nausea; and light headed and dizzy all the time. Daily routines and activities were becoming harder to do. If I tried to ?push? myself with simple activities like church, a family dinner or a date with my husband, I would end up ?paying? for it with worse symptoms the next day. I also started having ?episodes? in which I would get very weak/slow, slur my words, and have some confusion. For these and the other symptoms, I was sent to local specialists and they (along with my primary doctor) tested for various conditions.

During this time, I was praying and trying to figure out what was going on with my health. I just wanted to get better so I could be a wife and mom again. After months of scouring the internet for answers, I came across DINET?s website and completely identified with the symptoms. So I printed out the information and brought it to my doctor. He basically humored me by taking it/listening and he wouldn?t give it another thought. As the tests kept coming back negative, my doctor began to suggest anxiety/hypersensitivity. Looking back, I should have been a better advocate for myself, but by this time, I was growing weary and quite unsure of myself. It was a really difficult time. Later that year, an EEG came back positive and I was diagnosed with Temporal Lobe Seizures and Asthma. Both diagnoses came as a shock b/c neither condition has ever been a part of mine or my family?s history. I was put on Asthma medication and 2 seizure medications. I was also told during this time that Pulmonary Hypertension was a very probable diagnosis.

Early, in 2008, I made an appointment to go the Mayo Clinic in Jacksonville to get a second opinion. In the weeks leading up to my appointment, I saw the Mystery Diagnosis special with Linda Smith/Brown? who had POTS (and Dr. Robertson who treated her) I was in tears by the time the show ended. For the first time in 3 years, I felt I wasn?t alone and that this might be the missing puzzle piece to my mysterious health problems. A few weeks later at the Mayo Clinic, I saw a team of specialists. It was there I was diagnosed with POTS and NCS (my heart rate went up 50-60+ beats while tested on tilt table) Their Epileptologist questioned my diagnosis of seizures and recommended an inpatient video-eeg monitoring test. I was hospitalized for this test later in 2008. The test concluded that I had no evidence for epileptic activity. What a relief! Of course the unfortunate side is that I had been treated with 2 medications for epilepsy for over 10 months (that made me even sicker than I already was) and also lost (interim) driving privileges. The asthma and pulmonary hypertension diagnoses were also wrong. I can?t describe the relief in finally having answers to 3 years of confusion and difficulty with my body and the medical community.

To combat the POTS & NCS, Mayo put me on several regimens including: salt-loading, increasing fluid intake, compression stockings, etc? I continued these regimens with little relief. The Jax Mayo clinic was a blessing for my initial diagnosis, but unfortunately they could not provide the ongoing care and follow-up I needed. So I decided to make an appointment with Vanderbilt. It took a year to get in, but I ended up seeing a great doctor there (who is my current doctor and an answer to prayer) They re-confirmed my diagnosis (and also confirmed elevated catecholamines) and started me on medication.

Fast forward to this year . . . I am the most ?stable? that I?ve been in the past 5 years (though I find ?stable? an ironic word with our ever-fluctuating condition) I think this is due to: finally knowing about, accepting and managing my condition, the right medications, and the grace of God to help me with each day. It took almost 3 years to get a diagnosis, and the past two years to get a handle on managing my illness. I have used the DINET website as an invaluable resource to help me with knowing about, accepting, and managing POTS. Thank You! Like most of you though, I still struggle on a daily basis with a barrage of symptoms: heat intolerance, difficult mornings, shaking/jitters, dizziness, migraines, severe fatigue, inability to stand for long, etc . . . And I still have plenty of questions and struggles on this journey . . . So I hope to be able to use this forum to find support and answers, and hopefully to also give support and answers. And look forward to being a part of the DINET community

Thank you for taking the time to read my post :o

Mary

PS For those of you wondering . . . My user name is a nick name I was given as a child

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Hi Mary,

Nice to "meet" you. I'm glad to hear that your symptoms are now under control. My story is very similar to yours (I'll spare you the details) aside from the pregnancy. Do you have an effective migraine treatment? I always like to go the natural route and not take prescription drugs if they aren't absolutely necessary, but after 10 years with daily or weekly migraines and trying every natural approach under the sun with limited success, I started taking amitriptaline daily and it definitely prevents my migraines.

Emy

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Hello Mary-

I am glad you health has improved to the point that you are able to participate in the forums. I also have Raynaud's and struggle with migraines - I haven't been able to read a novel in 2 years which is absolute torture for me.

Welcome

noreen

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Hello Mary,

I also received my dx at Jacksonville Mayo and live in Florida. I hope your struggle with your health improves now that you are on the right track. I live in south florida I hope we live close to one another and would be able to maybe get together.

Maggie

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Nice to meet you, Mary! My POTS started after having mono, then being in a car accident that required 2 hip surgeries. I was diagnosed at Mayo, rochester. I wasn't able to get the follow-up care from Mayo, but fortunately have found a cardiologist, neurologist, and primary care doc who admittedly know very little about my POTS but will prescribe meds for my symptoms. I also have pernio/chilblains alternating with the red, hot extremities you mentioned in addition to the tachycardia and other POTS symptoms. Thankfully, I have not passed out. With meds and other helps, I'm able to be a good wife and mom who has some physical limitations. Yay!

It's so great to hear how you advocated for yourself, not giving up til you found the help you needed. Great job!!! I'm glad you're more functional and can be a good wife and mom, even if you still have some limitations. :blink:

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Hello Mary, I also developed POTS after a twin pregnancy and c section.(What does it do to our bodies?).It took 2 years to get a diagnosis and DINET has been a great source of help for me too. Glad you are more "stable".

Melanie.

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Emy - Hi and nice to meet you too! It's neat to hear our stories our similar. Before I received the dx of POTS, I first tried the natural route for migraines too. I focused on minimizing triggers, PH balance my body, and (with Drs help) balance hormones with hormone replacement therapy. These measures helped a bit but, like you said, with limited success. (I also like to go the natural route if at all possible) Unfortunately, Excedrin was the only thing that helped for years. After I was dx, my DR said POTS can cause migraines and the beta blocker, that he prescribed me for POTS, should also help the migraines. He was right - the beta blocker has significantly reduced my migraines. I?m still very careful to avoid triggers? lying flat, disrupting sleep patterns, etc . . . ? b/c the more controlled the migraines are the less I have. I appreciate you asking! Sounds like you definitely ?know the ropes? of migraines and I?m glad yours are finally under control. How are your other POTS symptoms doing lately?

Noreen - Hello and thank you. I'm so glad to be a part of this forum too. Besides a few family members, all the people around me (including local doctors) have never heard of POTS or Dysautonomia or Raynauds for that matter. Nor have I met anyone in person who has had these conditions. So its nice to join a community with people who understand! Wow. I'm sorry to hear that reading is hard for you physcially. Normal activities can be such a challenge for our bodies. I saw RA in your dxs . . . is that Rheumatoid Arthritis? I've been checked for that many times as I've had juvenile Rhemutoid nodules and joint pain.

Maggie - Hi! So, you are battling the Florida heat too huh? Well, pretty much my strategy is "stay indoors until December" :P How are you doing with the heat? I live closer to North Florida, but I am familiar with South Florida - Pennbrooke, Hollywood, Fort Lauderdale etc . . . I used to live there. It would be neat to meet you and others with POTS though. Well, I guess for now we will be message board friends. It's good to meet you.

MomtoGiuliana - Hello and thank you for the welcome. It sounds like we have similar stories. That's interesting that you mentioned you became symptomatic during pregnancy b/c I noticed a few atypical things happening during pregnancy. I had extreme SOB (this was not from extra weight or baby - this started in the first few months and continued through, well, I guess present day) and I also had a lot of pre-syncope episodes. My OB chalked everything up to pregnancy, but looking back I believe those were POTS symptoms. Oh well! I guess I probably just seemed overly-dramatic to my OB :) Nice to meet you!

Thankful - Hello! Thank you for sharing your POTS story. It's really interesting that you have the chilblains/pernio and the red, hot extremities like me. They seem like exact opposites, but I *think* they are both innappropriate vessel constiction and vasodilation. I usually hear of people with Raynauds and they use warming measures for therapy or people with the burning extremities use cooling measures. But I find it a challenge to have both as helping one can trigger the other - I do try to keep temperature changes as mild as possible. Do you find it to be a challenge too? I got my first case of chilblains at the beach of all places. Apparently, just the temperature changes from the indoor air conditioner to the outside heat were too much (And I wasn't even out very long) Anyways, I really liked your statement that you are "a good wife and mom with some physical challenges" Early on in this POTS journey, I would get quite discouraged of what I wasn't able to be - almost feeling like I failed somehow - but I now know I am exactly what God wants me to be "a good wife and mom with some physical challenges" Thank you for your encouragement!

Melanie - Hello Melanie! It sounds like we have been through some similar things. I agree - it almost *seems* like maybe we have some sort of pre-disposition towards POTS and maybe the stress (trauma :P) of pregnancy and major surgery just brings it out somehow. A layman's theory at best. Well, I'm glad that you were able to get dxd after two years. How are you doing now? Are you somewhat stable?

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