More tachy, tests normal arghhhhhhhhhh

[StaceyYount]

Hi,

Question and a bit of a rant. Last week when I went to the traitor, I had to wait about an hour. Which of course would make me feel horrible but this was way worse. In the last 2 weeks or so my tachycardia and shortness of breath have gotten a lot worse. I though it was because the sinus infection I had was not gone. Was and am on antibiotics. And like many of you any infection makes me worse. But the thing is is that my tachy is worse sitting and laying down. At the chiros the other day laying down my hr was 113 and sitting up was 140 did not even take it standing I was to dizzy. I know some of you get this but htis is new for me, this long and this bad. I am also having chest pressure and pain but I thought was from coughing. Anyway while at dr.s my hr was just racing so much so that he noticed it. And everytime I tried to sit up I would almost faint. This is with feet up and everything. The longer I was up the worse it got. He was worried but said well you have been anemic and with the infection it could be waht could be causing it. Ok. So went to get bloodwork on thursday. Today I get call back everything looks fine. No infection no anemia! ARGHHHHHHHHHHHHHHHHHHHH!!!! And I am use to that but he had nothing else to say. ANd I am still feeling all those things. Can't sit up without the room going dark. What do I do now? Could this be something else? Is it just my POTS getting worse? I have felt that I was getting worse but again thought I was fighting an infection. Why can't this show up and have a clear answer and a clear fix.

Frustrated beyond belief and don't know what to do next. Any help or suggestions? you would think after 10 years I would have this down but as we all know it constantly surprises us!

Sorry if I rambled the brain fog is thick.

Thanks!

Stacey :-)

[Gena]

Stacey,

So sorry you are dealing with a doctor you don't like and trying to deal with this new symptoms. When the tachy and dizziness get this bad many people on the board go to the hospital and get IV solution. The sinus infection could have really dehydrated your body. Perhaps the IV would bring you some relief? Also, have you had your thryroid checked? How's your blood pressure been when your heart is racing?

My heart has been crazy the last few months too. A lot of arryhtmias, tachy and incredible chest pain. I think I"m slowly, but surely coming out of that phase though (knock on wood). It's very scary and uncomfortable.

I can't recall what meds you are on, but could it be a new med or even an existing med that is causing the increase in symptoms?

Just trying to think of anything that could be the culprit. I hope it's just a short-term POTSY thing that will go away quickly for you.

In the mean time don't forget to do all of the non-pharmaceutical measures to help relieve your symptoms. Sometimes it's easy to forget a few of these things, and they can really make a difference.

Keep us posted.

P.S. I loved the bear you crocheted. I wish I were talented like that! He was really cute.

[Evie]

Hi stacey,

Sorry to hear about your lab results. I know when the drs thought they found what was wrong with me (like 90% sure) then i got the tests redone and they came back normal i cried and cried and cried .... it seems counter intuitive yet its so nice to know whats wrong with your body and it so disheartening not understanding whats going on ....

I assume you have gone through the whole deal or cortisol tests and thryroid/hormone tests?

Im sorry i dont know what to suggest, i just wanted to offer support. *big hugs*

Ps: the teddy you made and pictured in the other thread is gorgeous!

[mom4cem]

I'm sorry you are feeling so bad. If you are feeling so bad with sinus problems/infections that certainly can keep your tachy up, your body is fighting an infection even if it does not show up anymore your body has been fighting it for a while. I don't know what meds, if any, you are on but if you are on a bb can you increase it a bit more? Have you checked your b/p, is it very low? Keep pushing those fluids too.

Sending you a big hug and hope you are on your way to recovery and this is just a little setback. Once you are through this, maybe you can find a more compassionte dr. . If one does not fit right in the straight box of what they know, then it seems we are out of luck. They don't know how to help, and at a point I think they give up. It's sad, and for most of us, it is hard to find someone who really will stick by us and keep trying until we find something that helps.

Hang in there.

Edited November 16, 2005 by mom4cem

[StaceyYount]

Thanks for the responses.

And thank you about the teddy. The teddy did turn out cute! I love to crochet!

Um I have had the thyroid tests done recently.Came back ok But my cortisol has run high on 3 different occasions but no one ever figured out why. Also my sed rate is always high but again they all just shrug their heads.

My bp has also been running a bit higher than normal.

My new doctor is gooooooooiiiiiiiiinnnnnnnnnnggggg to love seeing me the first time. heehe

No new meds. Actually I am on no meds at this time to treat the POTS. Too sensitive to most things.

I hate this phase can it go away now. waawaa! Sorry...

I will see what the doc thinks about iv that might help. And maybe once the sinus infection is gone this will go too.

Thanks again and hugs back to both of you!

[katie_b]

I'm sorry to hear you're having problems Stacey!!

I'm new to this forum, but I have had dysautnomia for 3 years (I'veonly known what it was for 1 year). This year I improved tremendously. But just last week I started to get very sick and passed out three times last week. Today I took licorice root and my heart rate dropped about 30 pts.

Have you ever treid licorice root before? It's a natural herb, so maybe you won't be sensative to it.

Good luch with everything!

[Poohbear]

All of us are different of course but I myself get worse when I get a cold, sinus, virus etc. I also have a horrible time with tachycardia regardless of position and have extreme sensitivity to meds.

One thing that helped me was going on liquid metoprolol, I started out at 1 mg (1 cc) every 4 hours and worked up to 2 mg every 6 hrs. I had to go to a compound pharmacy but this was my "little miracle". as long as I took baby doses it took the edge off my heart rate, it's short acting so leaves your system within a few hours. Maybe you could talk to your Dr about prescribing this for you. I sometimes have trouble taking it every day but I do good when I can take it on my really bad days.

My blood pressure often goes up instead of down (I'm a little backward in this respect).

IV Saline may help as well. It may give your blood volume a boost and help stabilize your heart rate. It usually helps me when I'm having the type of tachy you are describing.

Hang in there!!! I know how miserable it is not to have a Dr who is working with you & I consider myself luckier than most in that dept but keep searching when you have the energy.

Drink lots and lots of water too.

Edited November 16, 2005 by Poohbear

[Laura]

Hi Stacey! I love your bear!! What alot of work must have gone into making that. Good job!!

I was thinking about your increase in tachy... do you think things might be aggravated by the antibiotics? I've noticed a few posts lately of people having increased symptoms with antibiotic use and needing to switch types till they find one that doesn't bother them as much. Just thought I'd throw that out there incase there is a chance that is what is happening for you. I hope you feel better soon. Do you get to see this new doctor soon? Hope you can try the IV therapy. Might be a really good thing for you! Laura

[Evie]

Ooops i forgot to add that it takes me at least a month or so to recover from antibiotics ... it messes up my digestion which then makes my muscles hurt which then makes me get dizzy ... most people dont react the same way as i do however it could be likely that you are still recovering from antibiotics as others have said

[MomtoGiuliana]

Stacey--So sorry things are worse for now. Those symptoms sound too familiar to me--when my POTS was very bad, it was not unusual for me to have tachycardia when lying down. Also, my BP could be high lying down and then soar when I stood. I also am sensitive to antibiotics--or seem to be--POTS symptoms flare up for me while as well as after taking antibiotics. Have you tried getting rehydrated via IV? I know that helped this kind of symptom a lot for me.

Take care, Katherine

[morgan617]

Pooh, my bp goes way up too, instead of the other way around.

Stacey, so sorry you are so sick! I do know the frustration well, and I feel so badly for you. It's pretty bad when you are reduced to wishing your labs were all screwy so someone would do something!!!

I think the IV thing sounds good, maybe you are really dry. I can really tell when I haven't drunk enough.

My doctor says the best he is hoping for is just to give me some quality of life, no cure. I have accepted that. I applaud those of you that keep fighting and pushing. I told him I did want an autopsy when I died, because that's when and how they will figure things out. He said yeah in 40 years when you die, we'll discuss that! He's a crack up. But seriously, I do get frustrated and depressed sometimes that we can feel this bad and it doesn't show up. This morning I was sure my bp was l;ike 70/20 and I took it and it was 170/100!!! But I felt the same as you guys describe your pre syncope.....It's so frustrating.

Hang in there and hopefully at some point those antibiotics are going to kick in and you will get better. Sending off lots of hugs and chicken soup,,,mammamorgan

[calypso]

Stacey,

I may have asked you this already, but have you had an ANA done, and have you had autoimmune diseases completely ruled out? A high sed rate, frequent infections and some of the other symptoms you have could put you in that category. I'm guessing you've had every test under the sun. My rheumatologist, who I actually see because he sees a lot of CFS patients, says there also are many CFS patients who exhibit symptoms/signs like these but don't have an autoimmune disease -- it's the CFS/dysautonomia at work.

Anyway, wish I had some ideas for you ... sounds like a yucky POTS spell to me. The good thing is they tend to come and go. I'll try waving my magic wand and sending it away!

amy

[Mrs. Glass]

HI Stacey,

It sounds like what was happening to me a little while back. Almost word for word, and my PCP told me I had a viral infection which was causing all of this havoc in my body, she put me on antiviral meds and steroids because the viral infection had ended up settling in my tempanic membrane and caused Bells Palsy. After a week on the viral antibiotics my symptoms started letting up. It may not be this but if things dont get better I would ask my PCP about it. I know that the symptoms are horrible, and Docs who just pass you off are just a waste of space. Hope you start to feel better.

Have a symptom free day! A Big Bear Hug from me to you!!!

Vanessa

quote name='StaceyYount' date='Nov 15 2005, 06:09 PM' post='38430']

Hi,

Question and a bit of a rant. Last week when I went to the traitor, I had to wait about an hour. Which of course would make me feel horrible but this was way worse. In the last 2 weeks or so my tachycardia and shortness of breath have gotten a lot worse. I though it was because the sinus infection I had was not gone. Was and am on antibiotics. And like many of you any infection makes me worse. But the thing is is that my tachy is worse sitting and laying down. At the chiros the other day laying down my hr was 113 and sitting up was 140 did not even take it standing I was to dizzy. I know some of you get this but htis is new for me, this long and this bad. I am also having chest pressure and pain but I thought was from coughing. Anyway while at dr.s my hr was just racing so much so that he noticed it. And everytime I tried to sit up I would almost faint. This is with feet up and everything. The longer I was up the worse it got. He was worried but said well you have been anemic and with the infection it could be waht could be causing it. Ok. So went to get bloodwork on thursday. Today I get call back everything looks fine. No infection no anemia! ARGHHHHHHHHHHHHHHHHHHHH!!!! And I am use to that but he had nothing else to say. ANd I am still feeling all those things. Can't sit up without the room going dark. What do I do now? Could this be something else? Is it just my POTS getting worse? I have felt that I was getting worse but again thought I was fighting an infection. Why can't this show up and have a clear answer and a clear fix.

Frustrated beyond belief and don't know what to do next. Any help or suggestions? you would think after 10 years I would have this down but as we all know it constantly surprises us!

Sorry if I rambled the brain fog is thick.

Thanks!

Stacey :-)

[StaceyYount]

Thanks everyone!

I had not thought of the antibiotics maybe making things worse. And though the test does not show it I have always thought that our bodies with this dysautonomia are extra sensitive to any new infection that comes a long. So regardless of tests I am going to think it is an infection and go from there. And I have never tried an iv but you know how sometimes something just sounds good to your body? Does that make sense? I will call the traitor today! Thank you!

I have been to a rhuemotologist but she was not really interested and my doctor was so frustrated because he says I think you do have an autoimmune disorder but no one will help me treat it.Maybe a vasculitis? I do have petcahae (sp?) which no one has explained ( waht else is new) and the sed rate is consistently high.A few other tests from the rheumo came back a little off but again she did not seem interested in investigating.

Maybe a new docotor will be a good thing.

The higher BP is new for me but like I said I think this maybe an infection and my POTS flaring up worse again.

I am off to my chinese doctor today and she what she has to say. SHe can usually ease the chest tightness and stop the coughing for a few days which is good.

But I will ask about gettign an IV that is a great suggestion.

Thank you all, it helps so much to have someone who knows and experiences the same things you do to have to come and ask. I appreciate it.

Hello to everyone new, sorry you are here but glad to know you and thanks.

Ask me anything too!

We named the bear Sharma and my husband almost did not let her go but I will make him one too!

Hope your days are ok!

Thanks again!

Stacey :-)

[StaceyYount]

Hi everyone,

Gee you miss a few days and your topic is on the next page.. heehee

Anyway we decided to get a copy of my test results. For you newbies always alwasy do this. Anyway it showed that my RDW was really high. Now that isn't a big marker but as we looked things up on the internet it is a flag for pernicious anemia. And looking further into it the symptoms of pernicious anemia include rapid heart rate and breathlessness among other things. So I have started on a B12 suplement and wednesday whne I go back to see the traitor we are going to ask him aobut it.

Always check your tests and always get copies. I can't tell you how many times we have found things they missed or wrong things in doctors notes.And for you HPotter fans remember Constant Vigilance when it comes to your medical records!

Still freaking out about going to new doctor but since it seems dr. g may have missed this anemia maybe a new doctor is a good thing.

Ok off to give my sage advice to all the new posts. HAHAHA!

Thanks again for all your responses.

Hope you are having a good day today!

Stacey :-)

Edited November 20, 2005 by StaceyYount