shanying418

Hi Issie,

I'm glad you are feeling better emotionally I just want to acknowledge your pain. It is hard to deal with illness and keep loosing friends--if any even stick around. Please remember there are always people out there who will be willing to listen and give you a hand when possible. I hope you'll always have great friends surrounding you and help you whenever you need.

Thanks! So... I guess this is just another POTS symptom?

I have noticed over the last 8 years struggling with this disease that lately when my pressure is low and my heart-rate is up that the small of my back starts to hurt very badly. I have thought about it before but things are getting worse for me and it is so evident now. I was wondering if anyone else has noticed the pain in the back as well? It would help to know if this is normal or something different. Thank you all!

Hi Wibbleway,

I have back pain too. Here's some thought from what Chinese medicine says... I've once asked my Chinese Medical Doctor about back pain.

She looked at the location and told me, it's originated from my heart/tachycardia. (In case you are not familiar with the system I'm talking about, CMD is a MD who graduated from medical school for Chinese medicine. Not just an acupuncturist...) So to make it simple, there are pressure points/lines of the heart on our upper back. You might want to try messaging the place where your pain is... that sometimes work for me.

I would still mention this to the cardiologist though.... I think it's worth attention

Hi all,

This past week, I've been waking up in the middle of night or early morning (3:00am) finding myself literally bend over with shortness of breath. The shortness of breath isn't the severe kind like asthma, it's more of a feeling that there's no enough oxygen going into my chest. I'm wondering has this happen to anyone?

But if it just says pots they will understand? Or should it say dysautonomia instead?

I think I end up putting "Dysautonomia: POTS" and I have the full dx with all the medication, allergies, doc's name, phone....etc. on my iPod. I think they'll have enough info to at least call my doc. if something happens

I don't know if it's stress or what, but for the past few months, I've been breaking out in hives. The past few days have been really, really bad. The past 48 hours have been crazy-making. Claritin has absolutely no affect whatsoever. Lathered up one leg with hydrocortizone today, hives promptly migrated to the other leg.

I did a little Googling, started to think about a possible autoimmune cause for my dysautonomia. I've always thought that a nasty virus a few years ago started all this for me, but I'm starting to take a look at Hashimoto's, especially with my psychiatric symptoms.

Anybody have advice/comments?

Amber

Hi Amber,

Sorry to hear that you are having these symptoms. I'm of no help in terms of autoimmune disease because I'm suspecting that myself. However, in terms of hives, my PCP told me that Clartin usually doesn't work as well. Her suggestion is to use Diphenhydramine (Benadryl) in the evening and Cetirizine HCL (Zyrtec) in the morning. If that still doesn't do the trick, you can ask if your PCP is willing to prescribe Hydroxyzine HCL. Hydroxyzine helps me a lot. If you like the non-drug approach, Sarna helps block the itchiness. Other then that, I also tried Chamomile tea.

Hope this helps and maybe you'll have luck with finding an allergist/immunologist to answer your question...

I had an extreme reaction to mold exposure that sent me out of commission for weeks!

My immune system went into overdrive. I had a butterfly rash, itchy all over and was so sick.

Are his dysautonomia symptoms also worse?

Most of us have heat issues of various degrees. Maybe he is reacting to this a overdrive way because of his inflamed immune system? Time will tell. I do think the suggestion for some type of creme for his itchyness is excellent.

I have rashes too... it usually comes before/when my symptoms get worse... I was just wondering about this... Do you guys see an allergist for this?

Thanks everyone. I think I'll put down something like 1. my name 2. diagnose 3. Refer to iPod!

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Is there a 3rd option. Perhaps an EP who communicates? Between the 1st 2nd I would go with the 2nd if she's willing to help. My EP doctors have been the most helpful option for me. The cardiologists I have seen were very quick to diagnose but very hesitant to treat.

Brye

Hi Brye,

I don't know if there's that 3rd option... Don't know any EP doctors. I guess my 3rd option will be going to one of the doc. on the dinet list but maybe you can give me more info in regard to EP doc? I thought EP doc. are under cardiology. Yes, I agree, if I end up choosing, I think I'm leaning toward the 2nd doc. I just talked to my PCP's nurse this afternoon and is waiting to hear from either my PCP or the nurse about what to do next...Plz keep me in your thoughts. Hope my PCP make the right decision.

Hi so my PCP wants me to wear a medical alert bracelet. I am wondering does anyone of you wear this? If you do, do you put the abbreviation POTS or the whole long name: Postural Orthostatic Tachycardia Syndrome on the bracelet? I wonder if the EMT will actually know what POTS is if they see it... Any suggestion?

My answer is yes. But I do have doctors who tell me that fatigue is not the primary symptoms of POTS. Personally, I think that's the 2nd annoying symptoms accompany with POTS. I just sleep it off. Sometimes a short walk or moving the legs help. It might pump the blood flow a bit

Did you ask if she wants you as a patient? I have asked this of both the cardiologists that I have seen. One said: "I'm willing to try as long as you are willing to be a guinea pig and keep reading." The other doc said: "Certainly, the goal is to keep you stable and I am happy to consult with your other docs and Vanderbilt if anything strange comes up." I've chosen the second doc, I'm tired of being a lab animal.

I never asked any of them if they want me as their patient... Never thought of asking. My new cardio doc. asked me why did my PCP send me to her and after listening to my response she said that she is willing to talk to me from a communication stand of point. Maybe I'm being too honest when I told her my old cardio doc. didn't even really tell me what POTS is. He basically explained POTS in two sentences--"so your test is abnormal and you have POTS....etc." I never had any doc. who offers to consult other docs in the other hospitals. But that being said, I think they won't tell me if they do anyways.

Hi everyone, I just came back from my new cardio doc's appointment. The doctor I saw was nice. I think she definitely communicates better than my old cardiologist. She told me that POTS is difficult to diagnose and treat because of its relation with nerve system. And that my best bet to understand POTS will be reading it online (that's when I laughed and she replied "so you've already did that") She also want to do another two tests (some kind of stress test which they look at the muscles when and after the exercise) before starting me on an exercise plan.

However, this is the bummer I guess. My new cardiologist said that she'll consult an electrophysiologist and see if there's any other tests that she should perform. She said that though she would not have done anything different from my cardiologist so far, she thinks my old cardiologist, being a arrhythmia specialist, will know better than she does. She also says that there are a million of reasons that cause fatigue and fatigue is not the primary symptoms of POTS (dizziness and fainting are--which I have both)

Now, I'm left with this situation---do I go to the doc. who communicates better or the doc. who knows more about POTS but made me feel like I need to justify everything I said?!

Anyone has suggestion? What should I value more?

Shan,

Are these numbers from a past doctor's visit before you started Midodrine, or did you just not take the Midodrine for the morning/afternoon to see what it was? Your numbers wouldn't be accurate if you took your BP while still primarily on Mid. It stays in your system for awhile.

Cheers,

Jana

These numbers are from past doctor's visit After either on Midodrine or Florinef. . . I stopped Florinef because of the side effects (rashes). I don't have the HR or BP before on medication. The only thing I know from the doctor is my HR goes up to 150 before on medication . . .

I guess I learned to be organized a bit late LOL

How about try V8 or Gatorade?

Second opinions never hurt. If you are uncomfortable with a doctor, it is time to find a new doctor.

But........a cardiologist is a specialist, so they concentrate intensely on the heart aspects of health. You may mention the other symptoms, but most would just refer you to another specialist for them. They neither know, nor could treat other conditions/symptoms. It is a rare specialist that even asks about symptoms outside their "field". My Internal Medicine doc is the one I mention all the wonky stuff to; he NEEDS to know everything that is going on.

Thanks! I understands that cardiologist mostly only treats heart problems. And I do let my internal medicine doc know all the weird stuffs. However, it seems like she'll want to send me to different specialists, which is really reasonable.

Thanks for making me feel better about changing doctor. I keep wondering about my decision

My neuro doc. already ruled out seizures or tumor in the brain for fainting. It seems like it's b.c. they run out of ideas so they did a TTT to see if they can confirm my vesovagal syncope episode, but then they said I have POTS. Should I mention all the other symptoms? Every time I get symptomatic, I begins to have rashes and nausea. My PCP referred me to an allergist but I haven't decide to go. . .

I'll see what my new cardio says on Monday. I'll make a note for my questions and symptoms, maybe also bring my BP record with me. . . Tks.

Definitely take you TTT and all tests they used for your diagnosis. I am going to give you my experience, maybe someone else will have different experiences. Dr's not used to dealing with POTs, especially the cardios wont listen to your other symptoms. They will tell you to go and see someone else, that isn't their specialty. I've had a cardio look at me like I was crazy when I started telling him all of my symptoms. Hopefully your cardio will have some experience. If not be prepared for strange looks if you start mentioning various symptoms. At this point, I just stop talking and know that it's time to look for someone else.

I agree with you. My old cardio doesn't give me strange looks but I always feel uncertain after the appointment or phone conversation. I'm honestly not certain about my decision of seeing a new doc either. . . At least my old cardio doc. acknowledge POTS and is going through the medication list to try things out. Yet, I do notice that I stopped telling my old doc. what's happening . . .

Thanks for the reply! I don't know how many POTS patients she treated. . . When my PCP called them, they won't give her a specific doc's name so I basically just got a phone call this morning from the facility, saying that they put me in with a ___ doctor. While I checked their website and they don't have intro about that doc either. My PCP said when she asked a neurologist, the neuro doc. told her it'll be bette to send me to a cardio. LOL

@ Brye: When you said I should talk about other symptoms what does that mean? So I should also tell my new cardio doc. about the rashes/ abdominal problems? And relevant test records... I can't remember how many blood tests/monitor tests my PCP and cardio did... Maybe I should get my tilt table test result?

Thanks.

Thanks! I'll keep an eye on it...

Maybe try measure her HR by hand first. I believe you know where to take the pulse My PCP told me to take my pulse from the wrist for 15 seconds and times it by 4. I usually do it twice and average the numbers. At least that'll give you some idea before you find a smaller cuff. My monitor is a wrist BP monitor which works great.

Hi everyone,

I need some advice. I am seeing a new cardiologist this coming Monday for POTS. What should I bring? Which kinds of questions should I ask or prepare to ask? I was diagnosed with POTS about two months ago and for some reason decided to change a cardiologist to get a second opinion. My medical record is basically separated--parts in hospital and others on campus. Should I go get my medical record from the hospital? I believe my campus PCP has already faxed my school medical record to the new cardiologist. Any suggestions will be helpful. Thanks in advance.

For the past two nights, my 14-yr-old daughter has been unable to sleep. This morning, she informed me that when she lies down, her heart starts racing. She was lying beside me when she told me & asked me to feel of her chest. Her heart rate was fast. I'm not the type of mom who runs to the doctor with every little thing, but this has me frightened. I started fainting at 14, now I have PAF.

Should I take her in for a check-up, or do I wait and see??? I have some great doctors, and given my diagnosis, if she does have some type of dysautonomia, I don't think it would take her years to get a diagnosis. I just really hope and pray she didn't inherit this from me.

Please let me know what you would do. Thanks

I would suggest take her to the doctors. Yet, before that, maybe you can measure her blood pressure, HR and make a record of it. Record her heart rate while standing, sitting and lying down. Also, does your daughter feel better if she is in a sitting position? Hope this will help. . .

So I actually went and find out my BP and HR while not on midodrine. It was 123/81 HR 115 while sitting down. This is as close as I can find. I didn't use to ask all these info until recently. In other words, POTS taught me to be organized--even with the tiny little stuffs!

Again strange, Midodrine raises bp. Odd that it's lower after taking it.

You said that your heart rates sitting are about 115 off meds and about 60 after Midodrine. If you don't mind my asking, what are they standing, and what are they lying down? Both with and without Midodrine.

I don't know my blood pressure before being on medication. I only know that before I'm on medication, my HR goes up to 150 while standing (lying down... don't know...) As for today, with Midodrine, my standing blood pressure is 96/56; HR: 100. Lying down is 104/64 with HR 72.