My up-coming medical breakthrough. Tilt-table test, anyone?

[Tiramisu]

I left a very good doctor several years ago because he practices alone and I was once sick with a 104 degree fever and couldn't get an appointment. I thought I'd be better off in a bigger practice. The new practice messed up the insurance billing EVERY time and NEVER got referrals done. I realized I was not going in when I should have because I dreaded dealing with the insurance problems. Last summer I finally went in again and the same thing happened. Meanwhile, I kept thinking of the old doctor and how he did everything right. So, last week I finally switched my insurance back to the old practice and I had my well-check yesterday. 
 
I brought in a long list of all the issues I'd experienced over the last seven years, including bullet points of my current concerns and what I wanted from the day's visit. It was for my own purposes, but since I had time, I copied it all out neatly and wound up giving it to him. I also brought copies of all bloodwork and test results....and a copy of a recent research article on a condition (POTS) that I think could be the root of some of my problems. I felt bold handing all of this over, but he appreciated it. After reading it, he told me he thinks I could very well be right, and admitted his interpretation of my symptoms may have been wrong when he saw me before.
 
So I go in next week for bloodwork, EKG, and echo. We're starting the heart stuff from scratch since it's been a few years and the bloodwork will include all the rheumatological screenings as well as vitamin levels. 
 
The medical assistant could not find my blood pressure after many tries, so he had to come back to do it himself and it was 100/70, a little low. My hr was 118. So he wants me to try to have more salt and fluids, especially to build up my blood volume for the bloodwork next week.
 
I told him about my B12 deficiency and he wants my levels higher than they've shown in my blood work since supplementation, so he's already considering shots but will wait to see what the tests next week show. He told me he likes to see B12 at the higher end of the normal range. I would be so happy to get shots because even oral supplementation made a big difference for me.
 
Now I have to try to find out about getting a tilt table test. Has anyone had experience with this?

 

Thank you for letting me share this. :)

[Juniper]

I have had one. What is it that you are wanting to know?

[Spryte]

It's not a fun test, but it's not horrible.  You'll probably want a ride home.

 

I have POTS (among other things).  Did he check your heart rate lying down then standing?  When you stand - for quite some time - don't shift your feet, keep you feet firmly under you, and don't shift your weight around.  

 

I hope you get answers soon!

[Cindy in FL.]

My BP usually runs 90/60. Sometimes a little higher, sometimes a little lower. I also had a 30 day Holter Monitor which showed various rhythm issues. So, I had a tilt table test done a few years ago. I agree that it was not the most pleasant thing I have ever experienced (especially when they gave me the nitro and my bp dropped to 35/17), but not the worst, either. I think it's a good tool for getting answers.

 

Also, I agree with Spryte. The Dr. needs to compare your heart rate and bp lying down to what it is when you stand.

 

Best wishes on getting to the bottom of your problems!

[Twigs]

:grouphug:  :grouphug:  :grouphug:

[Tiramisu]

I have had one. What is it that you are wanting to know?

 

I guess some of the others have answered for me. Was it horrible? No big deal? How long did it take?

 

My hr is always high but very low when I sleep. Doctors have often tried to attribute it to anxiety, but I don't feel anxious...but I can if I feel weird and light-headed and my heart is racing.

 

I've noticed for years that my heart rate is much lower when I'm lying down. When I was in the hospital and lying down it was in the 60s when it should have been high if it were anxiety. That was a big clue it could be POTS.

[PinkyandtheBrains.]

Okay so I've had tilt table tests.

 

They are not painful, it was over fairly quickly.

 

I hate them though. It's hard to explain, but I just really dislike them.

 

Of course I'll do it again if needed.

[lailasmum]

Stars are great if you want help and advice with Pots or similar conditons. The UK website seems more complete they have a US one too that's improved a lot recently. It's  all the same people any way. They're really helpful normally and they do have a forum too but I'm not sure if you have to join to get access to it. 

[Kathryn]

I had one almost twenty years ago and was diagnosed with neurally mediated hypotension, which appears to now fall under POTS. Interesting, I've never heard if it. It was not a pleasant experience and I'm glad someone was there to drive me home.

[Kathryn]

Could you please tell me what POTS stands for?

See the links in the post right above yours.

[Tiramisu]

It's not a fun test, but it's not horrible.  You'll probably want a ride home.

 

I have POTS (among other things).  Did he check your heart rate lying down then standing?  When you stand - for quite some time - don't shift your feet, keep you feet firmly under you, and don't shift your weight around.  

 

I hope you get answers soon!

 

I've done the test on two of my dd's in the past but today I did it for myself. Following you instructions, I tried to stand for 10 minutes without shifting at all. Lying down my hr was about 80, while standing it was 110. I had a ton of PVC's while standing. I haven't had them recently but something must be triggering them. I've been loading myself with fluids to see if it helps.

 

I like my cardiologist because he doesn't freak out when my hr gets really high, but I don't want him to blow this off. I've been dealing with this for 14 years, with rates as high as 170 on monitors, and I'd really like to get to the bottom of it, especially after all the working out I've done this year without seeing any improvement in my hr.

[Χά�ων]

Boring but not bad

[Tiramisu]

Boring but not bad

 

I could deal with that. :)

[Spryte]

I hope you get answers.  And quickly.  

 

FWIW, I get different results on the hr tests - some days are just more "potsy" than others.  I do have things well under control now, too, though.  Heat and humidity are still triggers though.  

 

Pushing salt and fluids has been helpful.  And meds.  :)

 

 

[Juniper]

I was bored and annoyed. The nurses that had to hang out in the room were a bit trying. Other than that it was not too bad. :)

[Tiramisu]

I hope you get answers.  And quickly.  

 

FWIW, I get different results on the hr tests - some days are just more "potsy" than others.  I do have things well under control now, too, though.  Heat and humidity are still triggers though.  

 

Pushing salt and fluids has been helpful.  And meds.   :)

 

Do you mind sharing about the meds?

 

Years ago my cardiologist said he didn't want to put me on meds to slow down my hr because at night my it goes very low and they wouldn't want it to go down any more. He suggested talking to my gynecologist about an SSRI but I was hesitant to take something that would affect my mood because it was good and I didn't want to mess with that. He seemed to think it was perimenopause related. He probably didn't realize I had been dealing with this since my early thirties.

 

I do know someone who seems to have been helped with POTS symptoms with an SSRI.

 

I wonder if my POTS symptoms are related to blood volume because they've become better with more salt in my diet. The worst times were in early pregnancy when my blood volume didn't seem to be building quickly enough; the best was after having given birth and my blood volume was still high and there was no baby to share it with. It was a steady 60 bpm being up or down. I know there are meds for that type of problem.

[Tiramisu]

I was bored and annoyed. The nurses that had to hang out in the room were a bit trying. Other than that it was not too bad. :)

 

This doesn't sound too bad either. LOL.

[Χά�ων]

Side affects suck. I am not on meds for it right now. Instead I am trying to change how I act. I am to increase salt to as much as I can tolerate and push fluids. I can feel the difference when I do not push fluids. Salt is hit or miss. If I eat soup and some foods I can pile on the salt. Other times I cannot. I do not eat processed foods so that makes it even harder t get more salt into my system. 

[Tiramisu]

Side affects suck. I am not on meds for it right now. Instead I am trying to change how I act. I am to increase salt to as much as I can tolerate and push fluids. I can feel the difference when I do not push fluids. Salt is hit or miss. If I eat soup and some foods I can pile on the salt. Other times I cannot. I do not eat processed foods so that makes it even harder t get more salt into my system. 

 

Sometimes I wonder if the salt is taking the fluid to the right place. I need fluid in my blood stream but it seems to settle in my tissues instead, especially in warm weather and at certain times of the month.

[HollyDay]

just a thought....

 

Do you have any other things going on like joint issues?  Have you ever looked up Ehlers-Danlos syndrome?

[Tiramisu]

just a thought....

 

Do you have any other things going on like joint issues?  Have you ever looked up Ehlers-Danlos syndrome?

 

EDS is most definitely on my radar. My two DDs who have had POTS symptoms at different times are definitely hypermobile. My eldest dd has to deal with joint subluxation on a fairly regular basis. And my next one had to have spine surgery for a problem in part caused by loose ligaments. My dh is also hypermobile and had to be medicated for low blood pressure when he was growing up.

 

My joints are tight but my skin is a bit stretchy like EDS classic type. I've always wondered if my blood vessels stretched out with pregnancy and never regained their tone.

[lailasmum]

In our RAS support group (not the same thing but kind of related) tons of families are either hypermobile or diagnosed with EDS.  

[Susan C.]

Maybe try celtic, himalayan or real salt, a pinch in the morning (straight) chased by a glass of water. Good quality salt helps, and it tastes like the bottom of the potato chip bag. Much better than salt in water or juice (yuck). GL!

[mom2samlibby]

The majority of POTS symptoms sound like the symptoms of B12 deficiency.  I'm thinking that if you were treated for your Vitamin B12 deficiency a lot of them would clear up.  I'm extremely surprised that you have been diagnosed with a deficiency, but haven't been treated for it.  

 

I'd recommend this book.  Could it Be B12?  http://www.amazon.com/Could-It-Be-B12-Misdiagnoses/dp/1884995691/ref=sr_1_1?ie=UTF8&qid=1407099095&sr=8-1&keywords=could+it+be+b12  

 

I'd hold off on the major testing until you had these tests done.  http://b12awareness.org/about-b12/diagnostic-tests-for-b12-deficiency-methylmalonic-acid-homocysteine/

Diagnostic Tests for B12 Deficiency

• Serum B12
• Methylmalonic acid
• Homocysteine
•  

 

I'd probably treat that first before I started having a lot of other tests run.   What is your Vit. B12 level at?  This book recommends 500 or above, but the range is 200 - 900.  

 

There is a facebook group that I am on for people with Vitamin B12 deficiency.  There is a lot of info there.  https://www.facebook.com/groups/PAB12DSupportGroup/378663195569984/

 

Good luck with your doctor.  It sounds like you found one that will listen and help you figure out how to treat your symptoms.  I'm seeing a new one this week and I hope he will be able to help.  I'm getting tired of the shortness of breath, heart palpitations, lack of energy, numb legs, and vertigo.  

[Tiramisu]

The majority of POTS symptoms sound like the symptoms of B12 deficiency.  I'm thinking that if you were treated for your Vitamin B12 deficiency a lot of them would clear up.  I'm extremely surprised that you have been diagnosed with a deficiency, but haven't been treated for it.  

 

I'd recommend this book.  Could it Be B12?  http://www.amazon.com/Could-It-Be-B12-Misdiagnoses/dp/1884995691/ref=sr_1_1?ie=UTF8&qid=1407099095&sr=8-1&keywords=could+it+be+b12

 

I'd hold off on the major testing until you had these tests done.  http://b12awareness.org/about-b12/diagnostic-tests-for-b12-deficiency-methylmalonic-acid-homocysteine/

Diagnostic Tests for B12 Deficiency

• Serum B12
• Methylmalonic acid
• Homocysteine
•  

 

I'd probably treat that first before I started having a lot of other tests run.   What is your Vit. B12 level at?  This book recommends 500 or above, but the range is 200 - 900.  

 

There is a facebook group that I am on for people with Vitamin B12 deficiency.  There is a lot of info there.  https://www.facebook.com/groups/PAB12DSupportGroup/378663195569984/

 

Good luck with your doctor.  It sounds like you found one that will listen and help you figure out how to treat your symptoms.  I'm seeing a new one this week and I hope he will be able to help.  I'm getting tired of the shortness of breath, heart palpitations, lack of energy, numb legs, and vertigo.  

 

I was treated but not in any special way. My former doctor just prescribed B12 tablets, which did bring my levels up. My levels have reached the 500 range, but the new doctor actually wants to see them closer to 1000 and will probably start shots once he confirms my current levels. I go in for bloodwork this week. I'm not sure what he's ordering yet, but I know it will be a lot. He already gave me serious instructions to drink a lot the day before.

 

When I was having parathesias several years ago, the neurologists refused to test my homocysteine because he said research has shown that reducing homocysteine doesn't help and he thought I would just worry unnecessarily. I thought that was very unhelpful. I think he did order MMA, not alone but in a ratio, which is supposed to be good. But that was back in the day--before my kids had problems--and I hadn't learned to get copies of all lab results. Maybe I should call the office and ask for the results to be sent to me.

[Spryte]

Do you mind sharing about the meds?

 

Years ago my cardiologist said he didn't want to put me on meds to slow down my hr because at night my it goes very low and they wouldn't want it to go down any more. He suggested talking to my gynecologist about an SSRI but I was hesitant to take something that would affect my mood because it was good and I didn't want to mess with that. He seemed to think it was perimenopause related. He probably didn't realize I had been dealing with this since my early thirties.

 

I do know someone who seems to have been helped with POTS symptoms with an SSRI.

 

I wonder if my POTS symptoms are related to blood volume because they've become better with more salt in my diet. The worst times were in early pregnancy when my blood volume didn't seem to be building quickly enough; the best was after having given birth and my blood volume was still high and there was no baby to share it with. It was a steady 60 bpm being up or down. I know there are meds for that type of problem.

 

I take Florinef for the POTS.  It helps quite a bit, and when I've tried to go off of it, I've seen a recurrence of symptoms.

 

My POTS has come and gone for 20+ years, but all of that time I also had undiagnosed tick borne diseases.  Once we found and treated those, the POTS improved drastically.  It is the worst for me when Babesia is active - Babesiosis is a cousin of malaria, but transmitted by ticks - I am currently in remission.  Several people in my support groups have said the same thing - Babesia brings out the POTS.  I'm not suggesting you have Babesia, so much as reminding you that there are underlying causes to the POTS that you'll want to find.  Of course, I'm sure you know that.

 

I had not heard of treating POTS with an SSRI.  That's interesting.  I do take an SSRI for peripheral neuropathy as well, but have never noticed a change in POTS symptoms.  But it may not be the right SSRI.

 

For the most part, I increase fluids and salt when in a flare up.  

 

This website has been quite helpful, if you haven't already found it: http://www.dinet.org/

[Tiramisu]

I take Florinef for the POTS.  It helps quite a bit, and when I've tried to go off of it, I've seen a recurrence of symptoms.

 

My POTS has come and gone for 20+ years, but all of that time I also had undiagnosed tick borne diseases.  Once we found and treated those, the POTS improved drastically.  It is the worst for me when Babesia is active - Babesiosis is a cousin of malaria, but transmitted by ticks - I am currently in remission.  Several people in my support groups have said the same thing - Babesia brings out the POTS.  I'm not suggesting you have Babesia, so much as reminding you that there are underlying causes to the POTS that you'll want to find.  Of course, I'm sure you know that.

 

I had not heard of treating POTS with an SSRI.  That's interesting.  I do take an SSRI for peripheral neuropathy as well, but have never noticed a change in POTS symptoms.  But it may not be the right SSRI.

 

For the most part, I increase fluids and salt when in a flare up.  

 

This website has been quite helpful, if you haven't already found it: http://www.dinet.org/

 

Thank you!

 

Have you had any side effects with the Florinef?

 

There is very new research I just saw that suggests POTS could be autoimmune in nature, triggered by a virus. I agree with that but I don't think it would have to be a virus. Why not a bacterial infection, like Lyme, Babeiosis, etc.?

 

We have a lot of autoimmune issues in our family. And I went through a bad stage where I was had episodes of lightheadedness so frequently I thought I could collapse on a daily basis and had to keep that in mind in making plans. I'm always tachy, but don't always have other symptoms like I have after illness.

[Spryte]

Oh, that's interesting.  I have a host of viral infections, also transmitted by ticks.  I see no reason to think that a bacterial or viral infection wouldn't trigger this.  

 

FWIW, I also have Addison's Disease, triggered by the above.  The Florinef also treats that, along with Hydrocortisone.  Plus Hashimoto's - triggered by the same.  I call them my souvenirs from the very sick tick that bit me.

 

I haven't noticed side effects specific to Florinef, but to be fair - I have so much going on, it's hard to tell one thing from another.

 

The site I linked above has some good advice for basic things to do to help with POTS on a daily basis.  There are little tricks, that I did instinctively - you probably do, too, but just in case... Things like sitting with your legs pulled up under you, shifting position often.  You might read through and just see if there's anything you could add that might help your tachy.  When I'm in a flare up, my doc has me drink a quart of water with salt added every morning - sometimes I add lemon for flavor.  She has also mentioned trying tincture of licorice, but I have not tried that.   

[J-rap]

It's interesting that you bring up POTS!  I had just been reading about it because we are starting to wonder if my daughter has it.  She has already been diagnosed with adrenergic failure, which causes some of the same symptoms.  In fact, I don't really know what the difference is between the two;  they sound very similar!  She had the table tilt test and said it went fine.

 

Good luck!