worththewords

I had a long talk with Dr. Grubb about this awhile ago and I'm currently 6 months pregnant with my first child. I'm not sure about anything with EDS and the different types. He diagnosed me with Joint Hypermobility Syndrome. But he told me with POTS there is a 20% chance of passing it on but then he also told me that good genes tend to dominate the bad ones. My husband is very healthy so I hope our daughter will be as lucky. It's a lot to think about and discuss with your husband your different options. My POTS was very stable 2 years prior to getting pregnant. It's been acting up since I got pregnant but it isn't anything I can't handle. I went 4 years without a diagnosis and I had an ablation, which I wish I would have never had, before getting a POTS diagnosis. The comforting part is that if our child ever started showing symptoms at least I would know what was going on and how to address it.

No, I've always taken the generic brand, Clonazepam. It's only around $6 a month for me. You might want to ask your doctor why the name brand is better than the generic. I believe a doctor once told me he only prescribed Klonopin to patients with seizures that take them at much higher dosages. It's worth asking your doctor about further if it means saving a significant amount of $.

I've been on it for YEARS. It's been the most helpful thing for me in terms of POTS. It stopped the night time surges, I get better sleep, and it does help keep my HR down some. I take the same dosage and it's a very low dose so I wouldn't worry about becoming addicted to it. If you take it awhile and do decide to stop it just make sure you taper off of it. Good luck. I hope it is as helpful to you as it has been for me.

My mom was telling me about Dr. Oz's new show and that it was much better than she thought it was going to be. I may buy and send a documentary to his show when they come out.

I'm also pregnant and I had migraines throughout my first trimester. I didn't even bother with Tylenol because it has never helped me even for just a headache. The only thing I could do was take to a dark, cool room with no light or sound with an ice pack and sleep it off. My OB told me if they continued past the first trimester he would have me see a neurologist to find something safe to take for pregnancy and POTS. He felt they were related to the changing hormones. Thankfully they subsided after the first trimester. Perhaps you need to consult with a neuro that understands POTS and knows what to prescribe during pregnancy?

I would recommend a recumbent bike.

Makes sense to me! I was full term and healthy until my teens.

Thanks for sharing your experiences. I have been feeling somewhat better as the day went on. I am fatigued but that could be POTS and pregnancy so I've been taking it easy and taking naps as needed. I've been paying more attention now and when I am home I usually never sit still or in one place for too long. I think moving around helps a lot. I've always done well when I am out and about as long as I'm moving but when I start to stand around I get very symptomatic.

Thanks for sharing, Michelle! This is comforting to read!

Maxine - My OB has a relative with NCS so he fully understands POTS and is a high risk OB. My cardio and neuro work with him too. I have a good team that I am confident in. carinana - I used to have issues with hypoglycemia but I learned to eat smaller meals throughout the day. I haven't had a problem since. My OB suggests this to all his pregnant patients so I was already used to doing so. I'm pretty sure it was my blood pressure dropping since I repeated the episode in the ER and they could actually see it dropping as I was feeling worse. I see the cardio and the OB tomorrow. I managed to do some laundry yesterday and I was so tired afterwards. I look forward to seeing what my doctors suggest but based on how I am feeling I think I will really have to take it very easy. I am just trying to remind myself that this will probably be my last chance to rest before the baby comes so I should enjoy it while I can. I've been fortunate enough to have my POTS be quite stable over the past couple of years. Hopefully it won't take me long to get back to that place after the baby comes.

Thanks for the replies. I've never fainted that often to begin with but when I did it was always from standing and I had usually done something to trigger it. Fainting while sitting definitely upset my normal way of thinking about POTS in regards to my day to day life. I'm feeling a little more cautious now and a little more worried. I know that will ease up with time though. carinara - I did have breakfast that day and they checked my blood sugar right away and it was normal. I had a very mild repeat episode while I was in the hospital and they caught my blood pressure dropping. I don't wear compression stockings though. I tried them and I never noticed much of a difference. In fact, since I live in Florida they made me feel worse because I was always so hot. I couldn't imagine putting them on days like today with the heat index at 105. The more I think about it I feel like my culprit might have been sitting in the same position for too long plus pregnancy keeping my blood pressure lower than usual. When I am home I am always changing positions but a movie theater doesn't allow for much of that. I might be avoiding those until the baby arrives and my POTS becomes more stable again!

Claritin didn't help me but Zyrtec does. It's over the counter now too. I also use saline nasal spray and gel. This is straight from DINET's website under the "What helps?" section: Treating allergies might help one to feel better. It has been reported that people with POTS lose their ability to vasoconstrict (Grubb, 2000). This means that many POTS patients have problems with their blood vessels being excessively dilated. Histamine is known to dilate blood vessels, which can further lower blood pressure in POTS patients. Allergies may also stimulate the sympathetic nervous system. Many POTS patients have overactive sympathetic nervous systems and benefit from avoiding potential sympathetic stimulants.

I am 17 weeks pregnant and I've been told to take it easy and not do anything that could trigger fainting. I live in Florida so that has limited me to mostly indoor activities. Yesterday my husband and I went to see a movie. I drank a bottle of water before I left home and almost 2 more at the movie theater. I even had some of their salty popcorn too. The movie theater was nice and dark. The movie wasn't too loud. I thought this was an pretty POTS friendly environment. Then out of nowhere I felt my heart speed up so fast that it became difficult to breath. I started blacking in and out. When I was "with it" my hearing was coming and going. My husband is a pretty calm guy during POTS episodes but he took one look at me and grabbed his phone and called 911. While waiting for paramedics my heart got very slow. It would pound once so hard that my chest actually hurt then there would be a long pause and it would pound again. My breathing was still off and I was still in and out. After living with POTS for 6 years it takes A LOT to scare me and yesterday absolutely terrified me. I felt like my body was shutting down on me and if this type of episode could happen while I was just sitting, what am I supposed to do? The paramedics started asking me a ton of questions regarding the baby - if I was cramping, any pain, bleeding, etc. I didn't have any of that but when I realized how concerned they were over the baby that freaked me out too and brought my blood pressure right back up. (Maybe I should have went to see a scary movie to keep my BP up!) By the time we got to the hospital my BP and pulse were pretty stable but I felt completely wrecked. I just wanted to be home in bed. That episode just zapped the life out of me. They did an EKG and I was having tachycardia (surprise, surprise). They used a fetal heart doppler to check for the baby's heart beat and that was fine. I could feel the baby squirming around when they were using the doppler so that reassured me. Phew! They gave me fluids and did a bunch of blood work. When the doctor came in I told him I had dysautonomia or to be more specific POTS (but I said the full name). He looked at me like I had 4 heads and asked what that was. I'm pretty sure he thought I was just a little crazy until I had another episode (not nearly as bad as the one at the movies but just a typical one). Two nurses watched it happen and all the monitors caught that my BP dropped suddenly. They put me flat, gave me more fluids, and then I finally asked to just go home. I already have an appointment with my OB on Tuesday. I am going to try to get into my cardio on Monday. I haven't had an episode this severe in 6 years and the last time it happened I had done things to trigger it (a hot shower followed by a long walk - this was before my POTS diagnosis). Perhaps it is the pregnancy or maybe just sitting in the same position in a movie theater?! I'm not sure but it definitely has me concerned. The ER doctor put me on bed rest until I see my cardio/OB. I worry that ultimately bed rest is just going to make it worse in the long run. And I'm incredibly concerned about how this came on with NO warning and while I was sitting. Anyone ever experience fainting while sitting?! Any tips, suggestions, etc. would be appreciated.

I take mine at the same time every morning when I first wake up. Like someone else said, I'm surprised you haven't had sleep disturbances at night. I know it wakes me up a bit in the morning.

My doctor always tries to keep my TSH between 1.0-1.5 When it would go higher I started getting more symptoms. Increased heart rate is a side effect of Synthroid, unfortunately, but I found that about two weeks after increasing the dosage my body/heart rate tend to adjust.

Good advice! A lot of symptoms of hyperthyroidism are similar to POTS. I also take Synthroid but my doctors does blood work every 3 months to watch my TSH level. I wouldn't go longer than 6 months without getting blood work done!

I'm in the beginning of my second trimester with my first child so I'm no expert but I can share with you what I've learned so far. Have you asked your OB to try a different prenatal? I had problems with one and they gave me a bunch of samples of different kinds. I tried them all and then he prescribed me the one I tolerated the best. I had awful "morning" sickness my first trimester. It lasted pretty much all day long. It started to go away around the end of week 12 for me. I think it is different for everyone though. Not to alarm you but as soon as my morning sickness eased up and I got into the second trimester my blood pressure did get lower and overall I am feeling worse. My cardiologist is hopeful that the way I am feeling is a response to how sick I was for 2 months. My OB isn't too concerned with my low blood pressure but has advised me to rest as much as possible. Both my OB/cardio have recommended avoiding doing anything that could trigger fainting or falling (standing for too long, being out in the heat, not staying hydrated enough, etc.) Sleep when you need to sleep! I found myself taking random naps. Drink as much fluids as possible. I went from 5 bottles of water a day to 7 bottles adding in Gatorade and it did make a difference. Just try to listen to your body and hang in there! I have heard some POTS patients do well in the second trimester and I hope that happens for you!

I have seen EPs in the past and right now I see a cardiologist and neurologist to manage my POTS. Dr. Grubb is an EP and we all know he treats POTS plus you have been treated by an EP so I'm surprised you would be turned away. At the same time though, I once had an EP say that he basically was for the "electrical" aspect of my heart and a regular cardiologist could treat my POTS better. I thought it was kind of odd but I did appreciate the honesty! Can your previous EP give you a referral to someone? Or even your PCP? Also, did you check DINET's physician list for possible doctors in your area that treat POTS?

Personally, I never had problems with motion sickness until I got POTS. I grew up boating, riding roller-coasters/other rides, no problems with travel, etc.

When I travel by car or plane on long trips I notice when I get out of the car or off the plane I feel woozy. I've noticed that my blood pressure seems to drop if I stay stuck in the same position for too long. I always thought it was related to POTS. I try to fluid load before traveling and as soon as I get to my destination. I can't ride on boats, amusement park rides, etc. I get complete motion sickness with dizziness and nausea.

I adored meeting Dr. Thompson. I didn't see him as a patient. I went to see him for the filming of the documentary. I've been to Mayo in Rochester, MN and Jax, FL and to Dr. Grubb but I learned a lot from Dr. Thompson. When the filming was over he even took the time to talk to me about my life with POTS. I was very impressed. If I didn't live 9 hours away I would see him as a patient. He is upfront about how he has to cancel sometimes when he is not feeling well and that is something to consider if you are traveling a far distance to see him. But at the same time, how many doctors are you going to find that truly understand and have experienced what you are going through? It's something to consider. There is another doctor in Alabama, as someone else mentioned, that treats and worked with Dr. Thompson that might be worth looking into so you don't have such a long trip with the possibility of cancellation.

Have you been to see an ENT? I had a somewhat similar complaint and turns out I had a ruptured eardrum. Did you have a CT scan of your sinuses? My ENT also did a CT scan of my sinuses and found I had a lot of inflammation near my eustachian tubes that were also causing the problem.

I think you will be happy with Dr. Kusomoto. He's extremely knowledgeable and very understanding. I've had my diagnosis for almost 6 years and I learned a lot from him. It's not often that happens with a doctor! And he will see you for follow-up if you want to continue with him.

Dr. Kusomoto! He is amazing. I was diagnosed at Mayo - Rochester and he knew every single doctor I saw there on a first name basis. He knows a ton about POTS and has a lot of options for treatment. I am stable so he didn't change anything but gave me all his contact info in case something changed and I needed to see him again. I've been to Dr. Grubb and I had the opportunity to meet Dr. Thompson during the documentary filming and Dr. Kusomoto is right up there with those two. I walked out of my appointment feeling very satisfied and he took the time to answer all my questions and concerns. He made me feel better about the future treatment of POTS. I was very impressed with him. If you decide to see him, make sure you schedule specifically with him.

So do I! I used to see Dr. Blitshteyn at the Mayo Clinic in Jacksonville. I was very impressed and I was always learning new things about POTS from her. She's very compassionate and understanding about what we go through as patients. I highly recommend her!