Jump to content

Symptoms - Pots Related Or Not?


Guest Alex
 Share

Recommended Posts

I have been battling with some symptoms lately, and, yes I did read other people's posts about similar situations, I've even read the list of symptoms on the "main" website, numerous research/medical articles posted online, still I can't help but wonder...

First of all 2 1/2 weeks ago I started taking mestinon. I have seen improvements almost the same day. I was able to get out of bed, exercise, clean the house, etc, I almost felt NORMAL. Then out of the blue at the beginning of this week I was back to square one. My chest pain returned with a vengeance, I'm tired, weak, my arms and legs hurt pretty badly, my bp and heart rate are kind of all over the place .

My question(s) though:

I get chest pains that are sometimes sharp, sometimes they feel more like pressure. Sometimes they last for seconds, sometimes for hours. Some times I take a painkiller and it helps, most times nothing helps. Most time I get the pain I'm in bed resting, doing nothing special, so I can't blame exercising or exertion for it. Does anyone else relate to this?

Also, even if my bp is what people like to call "within normal limits" (anywhere from 90/60 to 135/80 or so this week) it fluctuates, and I can feel the smallest change. I've had my adrenal glands checked, so I know they're not responsible for the fluctuations. Is this common for potsies?!

Occasionally I get pain in my legs - again while lying down. At times it lasts for couple of minutes, but I've had it for the whole day and there wasn't anything I could do to make it go away. Does this happen to anyone else?

Lastly - this one's for the ladies! - do you find your symptoms to get worse a couple of days before your period?

Thanks.

Alex

Link to comment
Share on other sites

I can relate to the chest pain. Sometimes I get sharp pains in the left side of my chest that last a few seconds and sometimes I get a dull chest pain that lasts for hours. Pain meds have not helped with my chest pain. I get chest pains when I am laying down, when I am sitting, and when I am standing/walking/running. So I can relate to your chest pain, even when I am not doing anything that is overexerting (like lying in bed).

Note: I am not a doctor, and am simply relaying what my doctors have said to me. Please contact your doctor with any concerns you have about your blood pressure, rather than rely on what I have stated here. My blood pressure fluctuates a lot during the day. Even within minutes, it fluctuates quite a bit (in my opinion). I was told by my neurologist that It is normal for BP to fluctuate, as many factors can affect it. He said the only time I should be concerned about it, is if my blood pressure stays constantly elevated. I would ask your doctor about it, just to be sure. Did your tilt table test show the big fluctuations? Mine showed my blood pressure change from 117/60 to 144/95 within a couple of minutes of laying down. I don't know if my change from 117/70 to 144/95 is a big fluctuation or not in that amount of time, but to me, it seems like it is. I asked my cardiologist about my blood pressure fluctuations that showed up on my tilt table test, and he said he would get back to me, as to whether he thinks its a cause of concern, once he has had a chance to review the tilt table test. I don't think I feel the fluctuations. If it concerns you and you decide to see a doctor about it, it might be worthwhile to take your blood pressure at the same time, a few times a day (say in the morning before you get up, and various other intervals during the day, and a few like 5 - 10 minutes apart), for a few days/weeks so that way you have "evidence" to show your doctor about your concerns. Here's an article that talks about blood pressure fluctuations: http://www.latimes.com/features/health/la-hew-askus2jul02,0,7880597.story

I get pain in my legs (while laying down, sitting, standing, walking, etc...).In my case, this is usually due to muscle spasms.

Link to comment
Share on other sites

thank you both for your answers.

forevertired, during my tilt test my bp did not change significantly, my pulse on the other hand went up by 51 (if I remember correctly) beats per minute, from 96 to 147, while my bp decreased slightly.

i do keep a daily record of my bp and pulse (I started it as soon as I was diagnosed), so i will definitely share the data with my dr, thank you for suggesting that.

Hope, I wish I had a cardiologist like yours, the one I have seen tried to even discourage me from checking my bp, let alone keeping a record of it. Also, trying to call him would be a sort of "mission impossible"... Unfortunately.

Link to comment
Share on other sites

I am blessed to have found a cardiologist AND primary doc that works with pots (this is a new primary, the one I had before kept telling me I needed better drugs from a psychiatrist.) My cardiologist is actually a partner of one of the docs listed on the physician list provided on this website. I know location is everything though, you can't just drive across 3 states to get to a doc willing to help you. I hope you can find doctors that will help you.

Link to comment
Share on other sites

Hi sorry you seem so uncertain about your condition - it takes a while to get what is normal for you and whether it is similar to anyone else. If it helps I get chest pain - and not just on exertion - often it will go off if I lie down but not always and no medication seems to help it. I never feel quite satisfied that there isn't a reason for it but all the docs say they don't know what causes it. So long as you get all the tests to check it is not something that needs attention. My chest pain eased with Fludrocortisone but it has returned and it doesn't always seem to be related to HR. My bp fluctuates and i can almost feel it and know when it is higher than i would like - however a doctor would probably think it was well within normal.

Sometimes our symptoms do not seem to have much to do with bp or hr.

Hope this helps.

Link to comment
Share on other sites

I'm so sorry for your situation. You really do need to find a doctor to listen, don't you? That is so important because then they will work with you on different treatments until you find something that helps. Unfortunately for me, I have no "normal" my symptoms change not only day to day but hour by hour :) My saving grace was I had a normal family doctor who listened to me AND believed me.. Shock, right? So between the two of us, we didn't give up. The first cardio she referred me to looked at my 30 day Holter which showed huge HR variances and shrugged his shoulders and said "SO?" I told him my GP dr wanted a tilt table but she couldn't order one to check for something being wrong. He shrugged his shoulders again and said "Fine.. " and wrote out RXs for a Stress Test and Tilt Table. Stress Test was horrible- collapsed on the treadmill after 3 min. so his report said I was just deconditioned which I actually was NOT before- was a runner! Then tilt table- BP dropped, HR went 60 beats- THEN he decided to give me adrenaline and I don't remember much after that except that I think I may have died and came back to life??? :) I really don't recall what happened but I did pass out and woke up on a hospital bed. His report of my TTT said "Inconclusive" and said I had tachycardia- inappropriate, but there was nothing he could suggest other than ablation. Thankfully I did some research and learned that wasn't a good idea for me :) My next appt. with him I brought up POTS from my own research and he laughed at me and said that I did not have POTS and he didn't really believe in it anyway. I asked him to explain my TTT and he handed me my Stress Test results and said I was deconditioned and needed more exercise. Ugh.. I get annoyed even NOW thinking about this arrogant doctor. So I left- went directly to my GP and waited until she had a moment to see me- we looked at the tests and both agreed the TTT looked way abnormal. Ust she had never dealt with POTS and had only heard of it when I sent her a link- so we learned together- so she called the cardio back and asked him to refer me to an electrophysiologist cardio- and amazingly he did- and THAT doctor ended up being my miracle #2. Looked at my TTT and in 2 seconds diagnosed me with OH and POTS but felt there was more going on so I eventually ended up at Mayo- and there's a lot more- but the point is- you need someone to listen.

It's frustrating, but are there any other cardiologists near you that you can see? Or see if you an find a patient liaison or advocate to help. Or if there is a Quality dept. in your hospital. No hospital or doctor likes complaints so they will usually help. And of course, I think we've all learned the hard way- we have to be our OWN advocate. If I would have listened to that first cardio- well who knows- where I am now is pretty bad so I don't know if I'd be worse or not :) but I would not have a diagnosis or known what I was dealing with.

Good luck!!!!!! We are here for you!!!!!

Jen

Link to comment
Share on other sites

Hi Jen,

thanxs for taking the time to read my post and for your answer.

My heart goes out to you, as it sounds like your "journey" to get a proper diagnosis was a pretty rough one, and I'm sorry you had to ho through all that.

I do have a dr that listens and is willing to help, but he doesn't always have answers for me as unfortunately he is not a cardiologist or a POTS specialist.

my cardio dr - the second one I've seen - is a POTS specialist, but I found him to be a bit too arrogant for my taste. He had his mind set on a treatment course for me even before i first set foot into his office and treated me like a number rather than a person... Oh well. Needless to say that appointment turned out to be a huge disappointment and I returned home in tears. He's the only POTS specialist I can see without having to travel too much, which is a bit out of the question for me now for a number of reasons.

The previous cardio dr I saw ran a whole bunch of tests - ecg, xrays, blood, 24 holter, 2 week loop, stress test and concluded I have anxiety and I should go home and relax. Plus he nonchalantly told me to stop taking bisoprolol cold turkey as in his opinion i did non need to take it. Luckily I weaned myself off it the best I knew how and still ended up with a pulse of 160 lying down.

sorry for my ranting, I guess I'm a bit frustrated and at times I need to vent off.

this forum is a real blessing, and I wish I could hug every single one of the people here for their help, support, knowledge, for being here for one another.

Alex

Link to comment
Share on other sites

I've had all the symptoms you describe, and I believe it is all due to dysautonomia. I have a Mitral Valve Prolapse, too... I believe the chest pressure could be related to blood pooling, as is the pain in your legs, and then it also could be nerve related, when it is stabbing pain. You can be symptomatic anytime, even without fluctuations in your HR or BP. When I was going through menopause my symptoms were worse, so hormonal fluctuations are a factor, too! This is not an exact science, and it doesn't always make sense!!

Link to comment
Share on other sites

thank you lemons and kim!

I've said it before, but I'll say it again, I'm so grateful for this forum! Believe it or not I get more answers here than from my POTS dr. Sad but true.

Alex

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...