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  1. Hi Issie, I know this is coming a day late, but just wanted to say I'm sorry that you are going through such a tough time. Our chronic illness/pain can make daily life such a challenge and then our *friends* dump coals on our heads! I too have lost many friends (and gained a few unexpected ones) along this POTS road and understand how hurtful and lonely it can be. ((Hugs)) And you'll be in my thoughts and prayers! Mary
  2. Chaos - Yes, I am so grateful the ENT has been so thorough and willing to think outside the box. Before I was DXd with POTS, I got the "its all in your head" for almost two years! I laughed at your "this time it is all in my head"! Thanks for the thoughts and prayers! Hi Issie - Your so right!!! As soon as I typed this post, I remembered that I posted awhile back, so I went back and read it . . . and there was your post about a CSF leak! You would think we would get honorary degrees for all the research and medical knowledge up our sleeves huh? Thank you for caring and for your help. TXPOTS - Wow. I'm sorry - you have been through a lot - I'm glad they finally figured out the right DX though. I did not know that POTS could cause such severe orthostatic headaches . . . but since POTS causes severe orthstatic everything else, it makes sense. I actually would have probably chalked all the symptoms up to POTS if it wasn't for my crazy nose leaking out of one side for almost 5 weeks now. I will look that article up. Thanks for sharing your experience and the info! potsgirl - Yes, that is how my headaches have felt - the worst head pain I've ever had. I'm sorry you had to go through that. Thank you for you well wishes. I laughed at your "get your rear-end in there" advice. As a POTSY, who has been through the medical wringer many-a-time, I am (understandably) hestitant to go any doctor or ER unless I absolutely HAVE to . . . like if my nose is dripping brain fluid I'm not meaning to sound too "uppity" Overall, this has been difficult physically and emotionally. And just earlier today I had a friend say something very hurtful about my new medical problem So I needed a good laugh and it's so nice to come on this board and talk with understanding people!!
  3. Hi Lieze, Yes!! I understand that feeling/symptom exactly. It is just how you describe - a wired/hyper/jittery feeling that feels like you've drank 10 cups of coffee. Mine is also accompanied by my whole body feeling shaky and tremors in my hands. It's almost like a rush of false energy though, because when its over, it leaves me worse then before. In my case, its caused by too much catecholamines ("fight or flight" hormones) being dumped in my body when I stand upright. It actually would happen every time I stood up, but now the beta blocker I'm on has blocked some of it, and it only happens when I do too much. I *think* it is common in POTS to have too much catecholamines "dump" when upright or for the catecholamines to not clear out of system properly or to be sensitive to normal levels of catecholamines. I hope you are able to find some help for it - I know it feels awful!
  4. Hi Everyone, Just when I finally started to participate on the DINET board, I was hit with some new symptoms (and a slew of doctor appointments and tests) . . . Basically, about a month ago I experienced a severe squeezing pain in the back of my head that was only relieved by lying flat. Being upright or movement would make it worse. It came on suddenly and lingered for a few days and left. It has occured several more times since then. It is completely different then my typical migraines and much worse. The same day the head pain started, I noticed my nose was leaking a clear watery run/drip out of one side only. This has continued for over a month so far and is aggravated by being upright, bending, laughing etc... - just like the head pain. Also, I've been experiencing ear fullness, pressure, and popping. These are all new symptoms for me. I just saw an ENT and the doctor is highly suspicious of a cranial CSF leak (cerebrospinal fluid leak) This is where the fluid that surrounds your brain (and spine) leaks through a tear/hole somewhere in the dura (the protective sac around the brain/spine) They are currently running some tests and scans to investigate. I have already contacted my primary POTS doctor and he wants me go to a large hospital (Mayo etc...) if I have to get surgery to repair. I just wanted to tell everyone because I'm starting a new journey and have lots of waiting, appointments, tests, and "unknowns" ahead of me. Right now, I'm trying to take one day at time and trust God with all of those "unknowns." On a lighter note, I do find it somewhat humorous why I can't just "have a cold" when I go to the doctor instead of something "rare" or "strange" ha I'm sure you all understand that feeling! I also wanted to see if anyone else here has had a CSF leak? I would appreciate your help. And I will keep everyone updated. Thanks for reading.
  5. I'm sorry it has taken me so long to reply. It ended up to be a weekend of odd symptoms The day after I wrote this post, I started having a new symptom . . . severe pain/headache/squeezing in the back of my head only when upright or movement like yawning, talking etc . . . I'm very familiar with migraines and headaches of sorts and this was nothing like I've had before. I ended up going to urgent care and they did a CT scan that came back normal. The pain gradually subsided over 3-4 days. They are sending me to a neurologist. About the same day the "head pain" started, my nose also started dripping - not like a stuffy nose. The DR said I show no signs of a cold or congestion or allergies and didn't know what is causing it. And its because of these kinds of spontaneous, odd symptoms that in my first post I called "stable" an ironic word to couple with POTS :0) Anyways, all that to explain why I didn't respond yet! I read each of your replies and appreciate your advice nowwhat, I do think a holter monitor would be a good idea and also to establish a connection with a local cardiologist Thank you Maxine, that makes sense! I had already been on my feet awhile . . . I tend to walk around lightheaded too. I'll try to pay closer attention Thanks nmorgen, yes, it can be scary when they happen both at the same time! I will keep everyone posted Thanks momtogiuliana, I was drinking caffiene that morning so that also makes a lot of sense. Thank you I'll update everyone when/if I find out anything - Thanks
  6. Hello, I had a new symptom happen yesterday that I need some help with please. While I was cleaning up after breakfast, an irregular heartbeat started flip flopping/fluttering in my chest and made me involuntarily cough. I have experienced these lots of times before and know they are usually harmless. However, this time near the end of this heartbeat, I immediately *felt* like all the blood or oxygen was draining out of my body and I started blacking out. I sat down quickly and was having shortness of breath and feeling a little groggy. This whole episode lasted about 10-15 seconds - with the SOB and grogginess kind of tapering after a minute. I have experienced pre-syncope and irregular heartbeats as seperate ?normal? symptoms of mine, but I?ve never had them happen together/sequentially. Note that I didn?t lose consciousness, it was more like pre-syncope. I?m not sure if this warrants a trip to the doctor . . . I had a cardiology workup done several years ago (with ECG and Echo) that was normal besides POTS tachycardia etc. Has anyone experienced this type of irregular heartbeat with pre syncope/syncope? Is this a common or normal symptoms of POTS? I appreciate your help. Thanks, Mary
  7. 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" 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 ) 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?
  8. 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 Mary PS For those of you wondering . . . My user name is a nick name I was given as a child
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