janiedelite

I just keep hoping with you that your "jinx" lifts! I'm so sorry for all you're going through!

Yay! Glad everything went well... thanks for sharing your story of your brave little guy!

Hi Ruekat, I'm so sorry to hear of your increasing problems! It sounds like you definitely need a knowledgeable doc who's willing to try some meds or something! My mom's been on hormone replacement therapy for over a decade and her oncologist (NOT her gyno) decided she didn't need it any more. She felt horrible... fatigued, constant period, etc. and he realized his error and restarted her hormones. (not that I'm saying you should restart them... as I think I remember they took you off because of the risk for clots and your dysrhythmia???) There are several of us who's BP goes up when we are sicker. The longer I'm upright, the higher mine goes. My Mayo doc says it's the adrenaline kicking in trying to squeeze more blood up to my brain. I hope you can find a doc in your area! I see my PCP and a local neurologist who refer to the instructions left by the neuro I saw at Mayo. I had to fly 2000 miles, but it was worth it to get answers and a plan of action. Keep searching for answers!!!

I agree that it might be a good idea to see someone about your neck issues. Although I've been in 2 bad car accidents in the last 10 years and have bad jaw, neck, upper back, and mid back pain too. I'm currently going to physical therapy where they are doing myofacial release. It feels so good! But I do know that decreased circulation to the upper parts of my body due to POTS contributes to my pains/headaches. What works for me is a heated rice pack over my shoulders and on my neck, rest/exercise when appropriate, advil, and physical therapy. It makes the pains more tolerable. I've been diagnosed with small fiber neuropathy all over my whole body. I can't appropriately feel temperatures anymore and I often feel like I'm burning hot in my skin but my hubby tells me my skin is cool to the touch. What makes my neuropathy pain worse is stress, physical activity, heat, and it's worse at night. Sometimes benadryl helps my burning... no one can tell me why, but when it gets really bad (ie can't tolerate wearing clothes because of the friction of the fabrics or can't sleep from the pain) I have to take pain meds. The burning is always on my feet, hands, face and mouth, but spreads toward my torso when it gets worse. My mouth and throat feels like I've just drank a scalding cup of coffee. Popsicles or cold drinks help somewhat. The Mayo doc says that my small fiber neuropathy is responsible for my POTS. I take my temperature when I'm burning badly and they are all over the map (96 to 99's). Mayo ran every test possible but doesn't know what caused the neuropathy, but they suspect it came on after I had mono in 2006. You might not have neuropathy, and small fiber neuropathy is really difficult to diagnose. At Mayo they diagnosed me by testing my sensation and applying heat and cold to my skin and having me rate the temperature. I did okay on cold, but wasn't able to distinguish differences in heat. They all felt scalding hot. Pinched nerves in your neck can also cause pains/heat/numbness in your arms and hands. I hope you can get some answers soon, Sandi! Janie

I love it! How about when they stand you up to do orthostatic vitals and the intercom starts playing "I feel the earth move under my feet. I feel the sky tumbling down. I feel my heart start to trembling. Whenever you're around..." Or, playing off of the recent post we had about how knowledgeable vets are about dysautonomia... the next time I take Fido in for a check-up I ask her for a consult and plop myself on the steel exam table....

Hi Suzy, I have the pooling you describe while lying down. It's actually pretty visible on me. If I'm lying on my right side, the whole right side of my body will be pink/mottled. Same if I'm on my back, stomach, etc. The part of my body that is lower also gets really warm, sometimes hot and uncomfortable, while the body parts that are elevated get really cold. I'm sorry but I don't have the numb sensations like you describe. I have numb issues but they are pretty localized to my arms or legs and are due to compressed nerves. I don't get the "whole body" numbness. I do have a constant numbness in the palms of my hands and soles of my feet that the neuro says is due to small-fiber neuropathy. It feels like pins and needles there all the time. Hope you get some answers! Janie

I was saying "ahhhhhhhhhh" with you! What a horrible journey! So sorry!

Hi Amber, Congratulations on getting out there and seeing what your body would allow you to do! Great job! I've been going to 1/2 mile walks twice a day per doc's suggestion to avoid deconditioning. My heartrate is often like yours, borderline high, right after I stop. But I've noticed that the activity somewhat makes me warmer, and my veins get more bulgy and distended during the hour or so after I'm finished. For the 30 minutes to an hour after the walk I'm much more short of breath, fatigued, BP lower and heartrate much higher (at least 130's). I'm careful to rest once I'm done walking and let my body cool off. Just my experience!

Last summer I was at my primary care doc's for an appointment. I only recently was seen by a specialist at Mayo, so last year I was either in her office or talking with her on the phone monthly, bewildered about the crazy variety of symptoms I was having. She was always extremely understanding. I told her it I have never been an anxious person before, but that now it felt like my "fight or flight" nervous system was on overdrive. Now we know it's due to elevated catecholamines (my norepinephrine level on standing is over 1000). But she had the sense even last year to attribute my anxiety to dysautonomia. I never asked for antianxiety meds, although I take a little vicodin once in awhile for my small fiber neuropathy. When I saw the doc at Mayo one of my diagnoses was "secondary anxiety." I was a little mad at first when he put that on my chart but then I realized that he was stating that the anxiety was SECONDARY to the OI (caused by the POTS). Treating the POTS should help the anxiety, and he was right. As I've become more disabled over the past 3 years, I have struggled with anxiety at times because I feel so helpless. Most days I can't drive, crowded stores/restaurants make me feel dizzy/wierd, etc. I've seen many specialists in the last couple years, and a couple of them treated me as if most of my problems were "in my head." I never saw those docs again. I just try to be straight-forward and honest about my symptoms and how they affect my life. Your doctors are here to HELP YOU. They get paid to do that. He gave you the event monitor so that he can be aware of your symptoms and how to treat you. You have to advocate for yourself. I'm sorry that he and his nurse seem to be irritated, but maybe you need to clarify with him what events need to be called in??? Either way, they're here to help you.

Last year my hubby and I had over half a dozen camping trips planned over the summer. We're pretty rustic and like to pitch our tent somewhere in the mountains in the Pacific Northwest and enjoy the quiet and beauty of nature. Well, last June is when my POTS took a turn for the worse (although we didn't know what it was at that time), and after two unsuccessful attempts at camping trips we gave up. I was just too tired, hot, etc. from all the work it took to tent camp. And sleeping on the ground on an air bed was so fatiguing. Many of us with POTS spend most of our time indoors, avoiding temperature extremes, resting, etc. That's how my life has been over the last couple years, but one hope that kept me from despair was thinking of being outdoors. Sometimes I would be really stir-crazy, but still sick, and after my hubby got home from work he'd lay me down in the front seat of the car and roll the window down and drive and my spirits would revive. If I was too motion-sick to keep my eyes open, I'd just feel the breeze and we'd park at some scenic spot and enjoy the surroundings. We've been racking our brains for a way to camp that would accomodate my POTS, and our minimal finances. We came across these cute little campers called teardrop trailers. You can tow them behind a small car, and even wire them with heat and A/C. It basically is just big enough for a comfortable bed and some storage. We bought one this past weekend! Now I'm dreaming about far-away places again ...

Thank you. Very nice!

Melissa, thank you for sharing your amazingly inspiring insight.

Hi Desperate Mom, Everyone here already gave great info about changing meds and SSRI's, but I wanted to let you know you and your daughter are being prayed for. I think in many ways it's as hard or harder for loved ones to watch their family member suffer. I'll pray that your daughter finds the right treatment plan, and gets a bed soon. Keep hoping and fighting.

I get disability payments through my long-term disability insurer and they find me more convincing when I'm regularly visiting doctors who will validate my limitations in writing (and bring those statements). It helps to be as clear and specific as possible when describing your limitations such as whenever I stand up I get dizzy, shaky, nauseated etc., blood pressure drops, and to have as many tests results that document abnormal function (low BP, tachycardia, etc.). Putting your disease into the context of everyday activities helps, like saying how you you a shower chair and often need a person's assistance getting out of the shower because of the dizziness caused by venous pooling (just an example). It might be helpful to bring someone with you who will validate your limitations. Also, bring your assistive devices and explain why you need to use them on a regular basis. Good luck!

That's great!

Great! Glad it went well! It is such an wierd feeling when they inject the IV contrast... kind of like you're peeing your pants or something. I hope you get the results you need.

Firewatcher, thanks for your suggestion about the EDS. It has been very apparent that the defense is looking for any way to discredit my case. Unfortunately, there is very little documentation in my doctor's records for the 3 months following the accident about my hip pain. The pain was mostly referred to my left foot (which I complained about in the ER the day of the crash) and my mid and low back (which is documented in PT records a month or two after the accident). I suffered horrible whiplash which took me several months of therapy to recover from. Once my upper back/neck pain lessened the hip complaints emerged. I'm really only going through this out of principle since it ended up being such a financially devastating injury. After the health plan and LTD insurers collect their leins, and the attorney gets his, I'll be surprised if we get much at all if I get a ruling in my favor. I asked my orthopedic surgeon about dropping the case, but he is very certain that my injuries could have only happened because of this accident. The attorney is very confident in my case, mostly because he said I make a very confident, honest witness. How confident will I be with the POTS raging, though??? Anyway, all these questions are in my mind. We've been emailing the paralegal our various concerns, and lately we're wondering what will be our financial obligation if we lose the case. I asked the lawyer this question last year and he said that he doesn't collect fees if we lose and they pay the court costs, but who pays the defendant's attorney's fees? We've finally just gotten up on our feet financially after my job loss and medical issues... So I've hardly slept the past 2 nights because of this horrible adrenaline. It's so much more difficult to endure stress with POTS. I can tell I'm going to get really ill if I don't settle down. I told my hubby how I'm doing and he is fielding all the emails from the paralegal today. He also is taking the day off in 2 weeks for the settlement conference so he can drive me and speak for me if I need him to. Thanks for your input! Janie

My BP goes up with orthostatic stress (especially the diastolic, but both numbers can). I was told at Mayo to increase salt and fluids without any parameters, so I'm kind of feeling my way through it and using trial-and-error! I know that supine hypertension happens easily with me, so I drink and salt load in the morning first thing and taper off by the end of the day. I also hate having to get up so many times to pee but that seems unavoidable since the morning salt still keeps me more hydrated til the end of the day. For me, I like G2 as it has 270 mg of sodium in 20 oz, low sugar, and I can get it at costco. I add 1/4 to 1/3 tsp additional table salt and drink it before getting out of bed. The rest of the day, I mostly drink water but I'll occasionally eat a pickle or have some soup if I'm really tachy. Good luck!

Dr. Fealey drew a pretty clear connection in my final notes that my POTS was viral-induced, pinning down my onset to when I had mono in 2006. I was hoping that would be clear enough! Amber, thanks. I just might do that...

It sounds like you're in so much pain! I know the ER is usually not a good option for us, but can you maybe go to urgent care and have a doc look at your leg and give you some pain meds or muscle relaxant? Maybe if you bring your notes from Vandy with you it would lend credibility? I'm so sorry. I know your doc is out right now and no one else wants to see you, but your PCP's office has to tell you where to go to get help in time like this. Maybe one of her associates can see you in the meantime?

Oh, I'm sorry you have so much going on! Although, I can just picture the old floppy teddy bears the nurse described... Sounds like you have a great surgeon, at least! Not many orthopedic or neuro surgeons have much experience working on C1 and C2. And you're right that fusing one area just puts more strain on the surrounding joints. But it sounds like you don't have much choice! Poor thing! At least you can take your time to think about it. Again, sorry that you have so much on your plate.

I'll try not to make this too long. 2 and 1/2 years ago my husband and I were T-boned in our car by a lady who ran a stop sign and I've had to have 2 hip surgeries since then to repair the injuries, and I'm left with back problems. I had to leave my job because of severe pain and was out for over a year due to hip stuff. (Now I'm disabled from worsening POTS) Anyway, she had the lowest insurance coverage and I'm looking at medical bills for over 100 PT visits, 2 surgeries, multiple docs, over a year of lost wages, and future medical bills. And my underinsured motorist stopped paying 3 months after the accident because they say the hip injury wasn't caused by this wreck. So we've taken them all to court . Never done this before. The 4-hour deposition was SO fun... not. I thought I'd post my frustrations about it today because I had to go to an IME (Independent Medical Evaluation) this morning, basically a doc hired by the defense. And even though he'd read ALL my records (even my dysautonomia records, which are many) he had me regurgitate all the facts that are now over 2 years old. I'm having such brain fog lately, and tried my best, but I kept forgetting words (and when I'd ask him the word I was looking for to describe ___, he'd look at me like I was nuts). I couldn't even remember our wedding date 2 years ago when I was talking about using a cane on our honeymoon. I kept losing my place in sentences, but he kept changing the time in history we were focusing on trying to confuse me. He said he couldn't see how the accident caused my injuries, and I finally told him that that issue was the crux of it all and I was the one who filed a lawsuit so I appreciated his concern but that I would worry about proving my case! 1 and 1/2 hours of fun. I had a really bad dysautonomia month in December and rarely got out of bed. The constant requests from my attorney for paperwork and medical records were causing me to flare even worse. My husband actually told the lawyer we were dropping the case because he couldn't handle seeing me get any sicker. A good friend of ours convinced us to persist, and the lawyer said he'd have his paralegal just interact with my husband and not me. The settlement conference is 3/20, just a couple weeks away, and if we go to trial it will start 3/31. Hopefully we will settle and not go further. So, if I do go to trial I told my lawyer I'm going to have to lay down somehow. How crazy will that look??? And I'm having this brain fog which won't be very convincing on the stand when I testify... . But this tops it all... the defense's attorneys have been getting my medical records for all my docs for dysautonomia trying to say that POTS caused my hip injury . That really ticked me off at first, because it felt like such an invasion of privacy when we are dealing with finding out I have a chronic, debilitating illness they are using anything they can to their advantage. I know it's just their job, but I still have to defend myself to the likes of Dr. IME today saying that the nervous system doesn't dent bones, rupture ligaments or tear cartilage. Anyway, EVERYTHING we do with POTS is so much harder than when we were healthy. I'm sure you guys understand, and thanks for reading. Janie

Thanks for posting this article! The Mayo doc said my POTS was probably viral-onset (probably mono in 2006), but my mom and brother have had strange neurological or neuroendocrine problems in their 30's. It makes sense if there is a genetic predisposition that gets "triggered" by a virus. There has always been the suspicion that POTS is an autoimmune problem.

Okay, where's the kleenex... Very nice. Thank you.

last month I had abdominal and chest CT's with IV and oral contrast and did fine. Good luck!