worththewords

I'm glad I got to see it. That's a great way to spread awareness. If only we could all get our own local channels to interview us.. ! I look forward to seeing Shannon and her family on the documentary.

This is a good question. I can't take beta blockers due to asthma. I was actually going to try a real low dose to see if I could tolerate it as my asthma was exteremely under control. However, as luck has it I live in FL and brush fires have been going crazy lately causing my asthma to act up. Go figure!

I was on Verapamil for awhile. I believe that was the only calicum channel blocker I tried. When I was at Mayo-Rochester, they asked me to go off of it and see how I felt. Honestly, I didn't even notice a difference being on or off it so I stopped taking.

Also, while I was at Mayo-Rochester in both '03 and '04, I heard great things about Ivabradine. I guess the doctors there though this might be a good option for me. At the time though it was still in a study. Last I heard it was only available in Europe. Does anyone know if Ivabradine has come to the US yet?

i noticed that you want to have an ablation if it is IST and not POTS and how much you want your life back. i just want to encourage you to see other doctors, get more opinions, or whatever it is you need to do before making such a decision.

there are so many people on this board who have had ablations and it absolutely ruined their lives...it was the worst decision they could have ever made. if you do a search for ablation you will hear their stories. i would hate for you to think this would 'fix' you and do it and then be sicker.

I can only echo this! If I could do it over again, I would have gotten multiple opinions and most likely would not have had the ablation. I think maybe if I never had the ablation my HR could have been controlled with meds and I would not have developed so many other symptoms. Take your time with making this decision and get as many opinions as you can.

worththewords,

why did you have a tilt in the first place? what were your symptoms when diagnosed with IST, before ablation and post ablation?

I had the ttt because my heart rate was going over 200 and I started blacking out. My chief complaint at the time was the HR issue. Although I did have other things that I didn't connect at time time - such as blood pooling while showering, some fatigue, etc. My heart rate went sky high during the ttt and my BP dropped to 50/30 or something ridiculous like that. At that time they were puzzled, diagnosed me with IST, and scheduled an ablation.

After the ablation the fatigue was worse, I still have tachy, blood pooling, joint aches and pain, heat intolerance, etc. The two EPs that did my ablation were not familiar with POTS until I came back from Mayo with the diagnosis.

Like you, I rarely experience dizziness which I am grateful for. I had a lot immediately after my ablation but through the years it has almost completely gone away. Thankfully I don't have GI problems but I have some of the other POTS symptoms.

I was initially diagnosed with IST. (Although if an autonomic specialist had looked at my original ttt, I might have had the POTS diagnosis). I had an ablation and I really think that is what brought out full blown POTS. After my ablation, I had all these symptoms that I had never had prior. The ablation only helped in the sense that my HR really doesn't go over 165 anymore. It used to go over 200bpm but other than that it was a terrible decision that I will always regret. Definitely get a ton of opinions before you decide to go the ablation route.

I have PCOS as well and of course, POTS and this topic has come up for me. To my surprise I was told the younger I tried to conceive the better, which kind of freaked me out at the time. (I believe I was only 19/20 at the time) Fast forward 4 years and I spoke to my doctors more about this. They did discuss clomid and fertility treatments. They said this would be an option for me but that I would just have to follow up with all of my doctors to keep tabs on everything. My POTS is pretty stable so I think that is definitely something you would want before engaging in this. This isn't something I plan on doing anytime soon so I didn't get into great details about things. I just discussed possibilities. Hopefully someone will have more answers for you and it's probably best to talk with all your doctors to get their inputs.

Good luck!

I'd be interested to know if any Apple users are experiencing this. I access this site via 3 different iBooks--my home iBook, my work iBook, and Teri's iBook. I've never experienced the issue you report... I've been logged in consistently since the upgrade a few weeks back, even on Teri's computer, where weeks may go by between times I use her iBook to access this site, and therefor am more likely to experience the issue if it were, in fact, a IPBhost problem (the company that we use to run the DINET site--it's their software that makes this site work, provides us with smilies (emoticons), private messaging, emailing services, etc.

I access this site from both my Mac and my PC and I have the same problem with both comptuers. For Mac, I'm using Safari as my browser (maybe that is why?!) and internet explorer with my PC.

First, I would definitely check and make sure that going back to school isn't going to do something to hurt your SSDI. Like nadine said, they may start to question things if they think you are well enough to attend classes.

As for college, I went back when my POTS was doing okay but yet still unpredictable. My POTS did get aggravated and I ended up missing two days. I was surprised how far I got behind but then again it is college and things do move quickly. I withdrew and was lucky enough to get 100% of my tuition back even though I was through most of the semester due to the fact that it was a medical problem.

I decided to try online classes. I started off part time and now I've been going full time for over two years. It is actually a lot more work than attending regular classes. You have to do a lot more reading and even more writing to stay involved adequately. Even though it is more challenging, it turned out to be a great alternative for me because if I'm having a bad day, I can work from bed with my laptop if something really needs to be done. The nice part is that I know my schedule really well and I try to do things ahead of time so that if I'm really not feeling well I don't have anything else to stress about.

Depending on where you are POTS-wise, you might want to consider online classes. But definitely check out about the SSDI stuff first. If you decide to look into online classes and need some school suggestions, let me know. I did a lot of searching before I found the right school for me.

Good luck!

Call the airlines before your flight and ask for bulkhead seating. Most likely you'll have to ask to speak to a supervisor and tell them you'll fax a doctor's note if they need one. Just explain how imperative is that you have the extra leg room and close access to the bathroom. I do this everytime before I fly and I keep a note with me from a doctor from Mayoclinic just in case I run into any problems at the airport.

Everyone else had great suggestions.. I'm a nervous one when it comes to flying so I take a klonopin about 30 minutes before take off, drink a lot fluids before and during the flight, enjoy the salty plane snacks, when you get up to go to the bathroom give yourself a chance to stretch a bit more, etc. Every little thing helps.

Usually flight attendants are pretty understanding if you explain yourself to them. I actually fainted once while boarding a plane...right into a flight attendant. I had the flu really bad at the time, very high fever, body aches, etc. I didn't think they were going to let me fly but it was late at night and I was flying home. They put me in first class and made me stay hydrated the entire time and eat crackers. I didn't even get into my POTS with them but they took great care of me.

Have a good trip!

I'm so very sorry to hear about your mother. I imagine you are very shocked by the news as well as feeling just about every other emotion. Please take care of yourself during this difficult time. You and your family will be in my thoughts.

Alexia

I could probably write a book on my experience with this. Hyperthyroidism and POTS can really mimic each other. I would know because I had hyperthyroidism and POTS at the same time but it took years for doctors to figure out what was causing me to have what symptom.

Personally, my bloodwork came back that I was barely on the hyper side but it is worth noting that certain medications can mask your real number. Especially meds like antidepressants, steriods, etc. (I know there are more but they just aren't coming to me right now)

Thankfully I had a doctor who saw that my number was slightly hyper and that my family has a history of thyroid problems. I was sent for an ultrasound after my blood work, nodules were found on my thyroid, and then I had a biopsy that came by nondiagnostic due to the nodules being calicifed. I was sent for another test, if it came back cold it was supposed to mean one thing and hot meant another (one meant cancerous the other meant benign), mine came back warm! With my family history of thyroid cancer, we decided to have the radioactive iodine treatment which burns out and essentially shrinks all nodules and your thyroid.

After that all my symptoms were supposed to go away but I still had this ridiculous tachy, my endocronologist sent me to a cardiologist who ended up giving me an ablation. When my problems got worse, they blamed it on my thyroid. When my levels came back normal, my endo sent me back to the cardio. I did this for about 6 months straight. I think what it came down to is no one knew what was going on with me. Finally my endo shipped me off to Mayo-Rochester and that is where I received my POTS diagnosis.

I think it is very important to be proactive in your health care especially if you suspect something else is going on. You could ask if any of your medication might make your number appear to be normal if you suspect hyperthyroidism. Does your family have a history of thyroid problems? That right there is a real good indicator.

I'm not sure what kind of medicine they would give you but I can't imagine a doctor wanting to toy with someone with normal levels. You definitely don't want to go over to the hypothyroidism side. That will give you a whole other slew of problems. (Been there, done that)

I would just ask your doctor a lot of question. Take a list in and explain all the symptoms you have. Perhaps repeat the bloodwork more often. But keep in mind the symptoms are very similar to POTS as well.

I have had 2 out of the 3 shots required for the HPV vaccine, Gardasil. You have the first shot, then the second one 3 months later, and the final one 6 months after the second one. Personally I had no side effects other than a sore injection site the second time and I tend to be very sensitive and get side effects from many things. Advil makes me sleepy!

My doctor talked to me about how important it was for many reasons. Obviously cervical cancer prevention, often time male partners carry it without any symptoms or knowledge, and Nina's particular case was an eye opener. My doctor had mentioned things like that to me as far as contracting in other ways which is why he find it so important to have done.

My insurance did cover it. However, we weren't sure at first if it was going to and my doctor was explaining that many programs have been created so that you can get the vaccine for free. So if you are not going to get it due to your insurance not covering, ask your doctor about ways you can get it for free.

I read the concerns about why should you do the Gardisil vaccine when you aren't even advised to do the flu shot. My doctors do not advise me to get a flu shot but were very adamant about me getting this vaccination because this is a much bigger deal.

I'd make a point to talk to your gyn and any of your specialists to make a fully educated decision about this. Personally, I've encouraged this vaccination to as many people as I know after reading up on it so much.

I heard back from my doctor. She said that even though we live in Florida this can still be a problem for people here even though we get adequate amount of sunlight. I will start taking 400IU of Vitamin D three times a day and then see where I am in 2-3 months when we do bloodwork again.

I do get achey a lot. The only thing I can compare it to is the aches you get when you have the flu. She said that could be due to the low number but we won't know until my number comes up to normal if it is going to make any difference.

Thank you all so much for this information. It's very helpful. I'm still waiting to hear from my doctor to see how I will proceed.

My doctor recently had my Vitamin D levels checked and mine came back at 7.3 when it should be in the range of 22-55 (or somewhere in that range, I don't have the paper in front of me).

I had to fax a copy of the blood work results to my doctor and now wait to hear what this means and what to do. I've been reading up on this and the funny part is I live in Florida so I know I get plenty of exposure to sun. Granted, I don't go lay out in the sun due to the fact that it makes me blotchy and itchy (I assume a med reaction) so I am definitely one of the pale POTS-types. I am out and about every day though so I know the sun and I have to be greeting each other. I do eat dairy. I'm not one to have a glass of milk but dairy is in my diet. I guess I just don't understand how my number ended up so low.

I did search this topic and saw that some others had this problem and were taking some sort of supplement. I didn't see any follow up posts though on whether or not it helped and what it even helped with. Did you have to get a prescription from your doctor? Any side effects? What did it help/treat?

Any insight would be appreciated.

That's great, Nina!

When I was first diagnosed with POTS I got a personal trainer but he ended up quitting on me because my heart rate freaked him out. (I know my limitations!) I do my exercising on my own now but I have to say it was much more motivating to have someone there with me at times.

Good luck to you.

I was just looking for you online to see how your appointment went. Glad to hear your appointment went so well!! My fiance read your post with me, as you know I've been looking forward to seeing Dr. Grubb. I say the same thing about my skin all the time and I've always wondered about EDS. How did he bend your fingers? I can bend mine in ways I've never seen others able to do. Is there anything they do to treat hypermobility?

http://www.berkleemusic.com

or more specifically:

http://www.berkleemusic.com/school/courses/music_education

I don't know exactly how it is accredited but I do know people who have taken classes online through them. Hope it helps!

This was fantastic!

I go from red to a purplish color if I've been in the shower too long. I know it is time to get out when that happens or it will be lights out!

I'm really sorry that he has this but it is turning out to be good awareness..

I just visited the mainpage of WebMD and here it was:

What's Wrong with the Yellow Wiggle?

http://www.webmd.com/content/article/130/117670.htm

When do you go? Keep us posted on how it goes and what you find out. Thanks for taking part in the study. Who knows how many it may end up helping!

What a great gift!

I've always used laptops (even pre-POTS) and it really comes in handy on the bad days.

I am also a full-time online student so it helps when I can lay in bed and finish my school work.

You'll love being wireless too!

Last Active: 7th September 2006 - 06:12 AM

That was the date and time she was shown last active on the DINET forum. Maybe she missed this post somehow?!

Hopefully everything is okay.

It gave me really bad headaches. I take Aciphex now.