MomtoGiuliana

Just as follow up on this topic--

I saw my POTS doctor today (Dr. Nsah, formerly of the Johns Hopkins POTS/NMH/CF clinic) and asked him about exercise and heartrate and chest discomfort. I told him that everytime I try to climb more than a flight of stairs I get this weird sensation (not exactly pain) in my chest and my heartrate goes up to maybe 170/180. He told me that I should keep doing it anyway and not be concerned about it, unless I get dizzy afterwards or unless my heartrate remains elevated for a long period of time afterwards. He said I shouldn't push myself to the point of exhaustion, but that I should go ahead and do aerobic exercise every day, even when the chest discomfort occurs. He didn't think a heart monitor is necessary.

I would assume that Dr. Grubb would be referring to his personal professional experience/anecdotal information if he said "there is only a 20% risk of passing this on to our children". I didn't think that was known. I saw my POTS doctor (Dr. Nsah, formerly of the Johns Hopkins clinic) today and he said on this topic that he has seen a tendency for mothers and daughters to both have POTS. He didn't offer any statistic.

Also I found it interesting that the doctor predicted how you would feel in each trimester. What he described was not the case for me. I was off and on ill (with no diagnosis at the time) from the 2nd trimester. I felt great (other than morning sickness) in the first trimester. Other POTS patients on this site have said they felt better and better as the pregnancy progressed and were not on bedrest in the last month. But, I assume this is his general experience with POTS patients' pregnancies.

I also think the statement that all POTS patients are "high risk" when pregnant is surprising.

It does certainly make sense to be under the close care of your specialist during a pregnancy.

Just as follow-up on this--

I saw my POTS doctor today and asked him about epinephrine in anesthetic. He confirmed that it is widely used, but only needed if the individual has a risk of bleeding problems. He recommended that I ask for epi-free anesthetic from now on.

I certainly feel for you.

I am 35. I did not know I had POTS until I was diagnosed post partum. You can read my story on this website (Katherine's story) so I won't repeat any of it in this message. It sounds like your situation may be extreme and you may need to be under the care of a specialist during a pregnancy and even advised as to whether you should attempt one. I was in a life-threatening situation during labor. Today my baby and I are fine and I am recovered for now from my extreme POTS symptoms.

Many women with POTS seem to feel better during pregnancy--I think especially in the 2nd and 3rd trimesters. There was another recent discussion on this board about POTS and pregnancy--you might want to take a look, if it is still there.

As far as adoption, my husband and I are interested in adopting a 2nd child. Like you, we are not comfortable adopting a special needs child for the same reasons. It is time-consuming and expensive to adopt, but "middle" income couples can do it. I have several friends who have adopted children and their household incomes are between $50,000 and $70,000 a year. If you'd like to stay in touch on the matter of adoption (obviously not a POTS topic) send me a personal message.

Best wishes,

Katherine

As far as the work issue, and even a definition of "moderate" or "severe" POTS, the problem is that we are all so different in our symptoms and their severity. It is not an illness that can be pigeon-holed, and we all know that's what doctors like to do, as well as insurance companies and govt agencies. Another problem is that it is truly a cross-disciplinary illness since it affects many different systems--and we live in a time of ever increasing specialisation of doctors.

It would help us certainly if doctors would educate themselves on this disorder, especially general practitioners. My little sister is now beginning to develop POTS, I think (she's 25). At least we know what it is. She went to her internist and told her she thinks she could have POTS b/c that's what her older sister has, and her internist said, oh no, I don't think you have tuberculosis of the spine!

I think that those of us who are well enough to should band together and work on this problem of doctor ignorance. Actually, my POTS doctor gives seminars all over the Delmarva Peninsula to doctors--for the past year.

justme, you sound like a wonderful caregiver. It is hard for most people who don't have this problem to be so truly empathetic.

Katherine

When my POTS was really bad, my body was very twitchy, especially when I was going to sleep, like you describe. It was very weird. I don't have this anymore at all.

Katherine

Hi Jessica

I had to have a local anesthetic two months ago to have a thyroid biopsy. I don't know if it was the anesthetic or the procedure (painful probing of my neck with a needle), but for at least two days afterwards I was pretty "POTSy". I felt so bad that I missed a day of work. Anyway, after a few days I was back to functional. Perhaps you should ask your POTS doctor for his or her opinion, but I don't think it is likely to be a severe or long-term problem to have the local anesthetic, unless you've had a severe reaction to it in the past.

Katherine

Just wanted to say that your experiences are very similar to mine. I was told I was having panic attacks for months before I was diagnosed with POTS. When I told my general practitioner and my ob/gyn some of my symptoms, they acted like I was being an extreme hypochondriac and insisted that nothing was wrong, except that I was depressed and anxious. I also experienced the isolation I think you describe--people in your life turning away from you b/c they think you are having some kind of bizarre mental stress reaction.

It must be particularly difficult to have these symptoms in your profession (I worked as a teacher, too, for 4 years).

POTS patients do tend to feel worse in the AM (as you describe).

The good news is that most people with POTS do eventually recover to a functional level. How long that takes will vary from person to person. I was out of work for almost a year.

Your attempt to educate yourself on this condition will go a long way to helping you improve your health (if indeed this is your condition)--as will finding a specialist who understands how to detect and treat it.

Best wishes.

unicornisis--

Glad you found the forum. I live in Ocean City, MD--not too far from you! I guess about a 4-5 hr drive.

When I was first diagnosed there was no way I would have been able to drive a car. I was too dizzy and weak. Like you, I was also very shaky. I think this is a common POTS symptom. A year later, with treatment, I am nearly fully functional. It will most likely be a long haul for you, as it is for most people, but you are very likely to improve.

I know how isolating it is--we all understand! Your friends and relatives go on with their lives, and yours has come to a standstill. Hopefully, you have a few people in your life who are caring and supportive while you go through this. And it is wonderful to have a forum like this to turn to, too.

I started having mild POTS symptoms in my early 20's. I had a more severe episode of POTS in my late 20's. It wasn't serious enough to make me miss much work, but I felt bad for several months (it wasn't diagnosed). I had a severe episode of POTS associated with pregnancy when I was 34-35. After a year of treatment, I am nearly fully functional (still on the meds) and back at work part-time and caring for my toddler. My POTS doctor told me that POTS onset associated with a virus or other stressful event is likely to resolve much faster than spontaneous onset.

I do continue to have mild symptoms, and from time to time it seems mild relapses (if I get sick or have a medical procedure), but overall, I feel I am recovered to a reasonably well level.

My younger sister (25 yrs old) is suddenly having POTS/NMH symptoms--tachycardia, dizziness, anxiety. She lives in Savannah, GA. I checked the physician list and the closest doctors listed appear to be in Florida. Just wondering if anyone lives in this area and/or can recommend anyone! Her GP hasn't even heard of a tilt table test!

Dawn

So glad you found a good doctor so easily for your daughter. It must be the hardest thing in the world to see your child suffer with a significant illness. Hope she gets well very soon.

Katherine

Yes, I have this same problem. I don't overdo it for that reason. I walk and do yoga and that's about it. I would be very curious to know what advice your doctor gives you. I am also going to be asking my doctor about that.

Do you notice it is worse in the AM (the tachycardia). Often, I can exercise with more vigor in the PM without having an outrageous heart rate.

I was forced into bedrest by my mysterious condition for several weeks (around the beginning of September '02. My daughter was born, 2 days after her due date, the end of Oct '02). My doctor never put me on bedrest, but b/c I was so dizzy and had these episodes of tachycardia she told me to stop working and driving around that same time.

Yes, I was worried about passing out during labor--or my blood pressure going too high, since I knew my blood pressure was all over the place. (For some reason, this never concerned my ob-gyn). And of course, what happened was that my blood pressure went through the roof after two hours of active labor.

Since I was not diagnosed with POTS prior to pregnancy, I was not on any medication, nor did I have any symptoms in the year or so before pregnancy. I felt absolutely great and healthy when my pregnancy started. Prior to that, I had had POTS symptoms, but it was never diagnosed.

Hopefully your POTS doctor has experience in seeing POTS patients through pregnancy and will advise and guide you. An understanding ob-gyn will be very helpful, too. I think it is very difficult for anyone to predict how pregnancy (and post partum) may affect you and this condition. It's going to be somewhat different for everyone probably. In general, what I have read is that for many women with POTS, pregnancy eases their symptoms. I hope that will be the case for you. Good luck and let us know how things go.

Katherine

EarthMother

That is wonderful that you were able to find doctors responsive to your desires, who also understood what you needed medically. As you say, that is probably essential for women with any medical condition. I live in a rural area, and concepts like natural childbirth, etc. are not widely appreciated. Overall, I have not been thrilled with the quality of medical care here. My doctor was great at slicing me open when my health reached a crisis point, but horrible at helping identify my problems, listen to my concerns or desires, and try to avoid what happened during labor.

I was devastated when I stopped breastfeeding. It was almost worse than being sick with POTS (and I was very sick). My cardiologist told me it was safe to continue to breastfeed Giuliana while I took prozac and pindolol (beta blocker) but her pediatrician said no. I didn't want to risk her health, so I did what the pediatrician said, and I weaned her. It was so hard for both of us. Breastfeeding was the one thing going right during our post partum period (besides the fact that she was a beautiful, happy and healthy child!). She thrived regardless, on formula, and I am glad that she at least got 4 months of nursing. Probably stopping nursing restored my health faster, as well, even tho I would gladly have given up restored health to continue to breastfeed her, as insane as that may sound.

Yes, being a mother is an adventure--like no other. It is wonderful, just exactly how EthansMom describes! It is the hardest job you will ever love.

justme

Glad she was diagnosed and being seen by the best of the best. Hopefully appropriate treatment will help her.

PS to previous post...

I have also cut down on sugar and simple carbohydrate intake, as that did seem to make my tremors worse, especially in the AM for some reason.

Silvia

I didn't take any medication specifically for the tremors. I have only taken a low dose of beta blocker (5 mg a day of pindolol, down from 10 initially) and a low dose of an SSRI and salt and fluids. Somehow, my body repaired itself over time. I still need the beta blocker, I think, b/c if I skip the dose, my heartrate is quite high. I am assuming the SSRI has also helped.

A book that I found quite helpful and hopeful to me as I went through this was Spontaneous Healing by Dr. Andrew Weil. He doesn't discuss POTS, but he describes in detail how all kinds of people overcame all kinds of illnesses. And he also recommends some very basic tenets for approaching illness. I found his breathing exercises helpful too (described in the book).

Your tremors sound very uncomfortable and I am sure, disconcerting. If you are like most people with POTS, you will be able to find a reasonable degree of relief eventually. Keep talking to your doctor(s). I hope you have one who is knowledgeable about POTS.

Katherine

Silvia

What is an autonomic nervous system test?

Katherine

Another thing to keep in mind with this illness is that symptoms can really vary from day to day, and that includes heart rate changes. Your body could have been having a better day than usual. A change in 20 bpm is something that should be suspicious as an indicator. Also, if you have already started the higher salt diet, that could already be increasing your blood volume to a point that you are not exhibiting as severe symptoms. Definitely need to talk to a knowledgable doctor about how to interpret this test result.

I think every woman with POTS has a unique experience--and that includes the experience of pregnancy. I think part of the reason is that POTS is triggered by different things in different people. For me, the hormones of pregnancy, etc. seemed to trigger POTS into full swing. EthansMom may fill you in on her experience that was far better than mine (she is 22 and I am 35, which may have also made a difference). But, I have also read that POTS patients often feel quite well during pregnancy. This was not the case for me. I was fine to ok until the third trimester. I had never been diagnosed with POTS, only autoimmune thyroiditis, which I was under close care for. Anyway, you can read my story on this website -- "Katherine's story", which describes my pregnancy and post partum POTS experience. I think if I had been diagnosed properly, my experience would have been a lot better, as I would have been under the care of someone who could help me manage it. Instead, doctors just shook their heads and went on the the next patient, or chided me for not getting enough exercise. My Ob/gyn had never heard of POTS (now she has), although she was quite certain she was correct in her diagnosis of post partum depression. On the positive side, my baby and I got through it, she is perfectly healthy, and I was able to breastfeed her for 4 months. I definitely will not get pregnant again. We may try to adopt a second child at some point.

I know how much many of us want our own children (the desire is hard-wired into us after all!), but don't forget that adoption, although a difficult process, is a wonderful alternative, and there are so many children on this planet who need a caring, loving home.

Katherine

Just make sure all your doctors are aware of all the medications you are taking, as some may not work well or may not be compatible when taken with others. Hopefully the doctor who diagnosed you is knowledgeable about POTS. I understand what you are going through right now. It is pretty much ****. But, there is a lot of reason to hope that you can manage this problem to the point of feeling reasonably well again. Try not to get too down (much easier said than done.) I think I already said in another message, I used to have bad tremors, and now a year later I barely have them at all. It may take you and your doctor awhile to find the right dose and combo of medications. You may also need to try dietary changes and physical therapy.

Take care, Katherine

I sleep far better than I did when I was first diagnosed about a year ago, but yes, I still am more wakeful at night than I used to be.

That's good that you are going to see your doctor.

I'm not familiar with either of these medications, but they are commonly taken by POTS patients. I believe all beta blockers can cause tremors as a side effect (that's what my endocrinologist told me). But also, POTS causes tremors in most people. It may just have to be a matter of time for your tremors to subside on their own.

Justin

Your description totally reminded me -- I also had that symptom of my body actually rocking back and forth--very subtely--involuntarily, when I sat. This is one of the symptoms that made me think my nervous system was degenerating or something. I also experienced a lot of involuntary twitching, particularly as I tried to go to sleep. So strange. These symptoms all gone now, or, for now.

Katherine