Stace915

Hi there,

I am so sorry to hear about your friend. That is terrible.

I don't know anything regarding the tumor but I do know a bit about POTS and anesthesia. I had surgery about a year and 1/2 ago, it was elective cosmetic surgery but due to anesthesia and my health it almost did not happen and needed a lot of special sign-offs etc.

What my electrophysiologist and later Dr. Grubb told me is that there is no reason that a POTS patient cannot have anesthesia however you need to take special precautions. In my case, the doctors some how contact the anesthesiologist way before my surgery and let them know my situation, they said generally you do not find out who your anesthesiologist will be until the day of surgery but they were able to schedule someone specifically for my procedure and they made sure that he was fully prepped on my case way before hand. I was told that the main concern was just watching my vitals, making sure that my BP did not drop too low and that my heart was not racing too much. They said that the actual anesthesia drug should not effect either my HR or BP but since my body always does its own thing, they needed make sure that it didn't react in a strange way.

I was beyond nervous, in fact I almost canceled the procedure just because I was so nervous about the anesthesia. We met the anesthesiologist that morning before surgery, and we even called my cardiologist and he went over my case with him again and everyone assured me that there was no reason to worry, that it was more of them needing a heads up that, hey this patient has a condition and her BP drops dangerously low and she gets tachycardia so that in case either of those things happened they would be prepared with the proper anesthesia cocktail to control it.

Surgery went perfectly, they said that both my HR and BP stayed pretty normal through out! I did have a complication a day later but that was completely unrelated. Since then we thought I was going to need surgery on my wrist (luckily some intensive occupational therapy and a brace saved me from that) and I discussed everything with a different surgeon and he said the same thing, that he would just work with my cardiologist and basically treat it the same way that my other surgeon did.

Hope that helps!

For years I have joked that I need a plastic bubble to live in, especially during the summer so I can be out and about but not be affected by the heat etc., so this is not actually a feasible idea since its SO expensive, but in a perfect world we can all get our own bubbles have a POTS convention while everyone is in their own bubble!

http://shine.yahoo.com/event/green/see-through-bubble-tents-provide-incredible-views-2458337/;_ylt=AiT7qap2yMgcTSiac_cQN0f7hKU5?selected=5#photoViewer=2

If it makes you feel any better my boyfriend who just turned 31 last week gets mail from AARP all the time! Everytime something comes we laugh, I have no idea if they got something screwed up on a mailing list and think he is older than he really is or what is going on, but its good for a chuckle. If they base it on the number of prescriptions they must have gotten our address right but put his name instead of mine!

Sending positive thoughts and a hug your way. I KNOW how difficult it is to stay positive, and some days seem a lot more difficult than others but here's hoping that you find something that helps you cope and helps you to function better each day.

and my allergies seem to be the worst at night, I assume it is because I take all my meds in the AM and by bedtime they are wearing off so on the rare occasion that I am really bad, if my throat is itchy so severely I can't sleep etc. I take 2 benadryl also. The doc says it is fine as long as I am not doing it everyday.

Hi there,

I take singulair (prescription), zyrtec (OTC) and a nasal spray called Astepro (prescription), and I still ALWAYS have a runny nose! I have tried a few other prescription allergy pills and this combination seems to keep all of my other allergy symptoms under control for the most part but the runny nose drives me crazy. I spoke to my doctor about it and they said the next step is seeing an Allergist and that weekly allergy shots would probably be very helpful and the next best suggestion for me. He said since I already take so many other medications they would rather not just keep adding allergy med on top of allergy med (and there are lot that are out of the question because of drug interactions). He said that the shots are probably the best bet for someone with severe allergies and other health issues. Honestly the only reason I have been putting it off is they told me that it takes about 6 months worth of weekly shots before I will see any relief! ...I know it will be helpful in the long run but I guess it also seems silly to me to get shots for 6 months and have them not help but I do understand your body has to build up a resistance to whatever they are giving you. If your allergies are severe enough to consider weekly or monthly shots I would say you should start soon (I will make an appointment as well!), because September is the worst time of the year for seasonal allergies, so if we start the shots now or asap they should be working right around Sept.

I have the same one that you have the OMRON HEM-712C, I have been using it for 5 years now and I can count on one hand the times I have had trouble with it. Generally if I get a reading that is either really low or really high I will take it another time or two just to verify it. I spoke to my pharmacist and cardio about getting another monitor because this one is a pain to carry around. I was looking into the small wrist monitors, I was told that although some are a lot more accurate than others and they are still not as accurate as the arm cuffs are.

I always post something before my appointments with the fabulous Dr.Grubb but I have yet to find any members with appointments on the same day. If anyone has an appt tomorrow please let me know, it would be nice to put a face with a name!

I always post something before my appointments with the fabulous Dr.Grubb but I have yet to find any members with appointments on the same day. If anyone has an appt tomorrow please let me know, it would be nice to put a face with a name!

I have not seen him but he is also one of the physicians that answers questions for our column in the newsletter. His information including the name of the practice he works at etc was included when he joined the team of doctors for our column.... I want to say hm.. maybe 4 editions ago? If you check some of the older newsletters you should be able to find it.

http://www.dinet.org/newsletter.htm

I know a lot of people will disagree with me but, you know what... you have been through a lot, you didn't deserve any of it and it is a ****** situation. As far as I am concerned, you have every right to vent, and cry and yell and scream and be angry!

Yes, you do have a lot to figure out, but you also need to take time for yourself and grieve and allow yourself to be angry, if you don't allow yourself to do that it will be a lot harder for you to move onto the next step. I wish I had some great advice for you, remember take things one day at a time, and one hour at a time if you need to. It sounds like you have a family that is supportive and all of us here, so once you get all of your venting out, *try* to stay positive and tackle one thing at a time. And it sounds like your soon to be ex did not deserve to have you anyways!

Canned response or not, at this point they can't say it is staying on the market and then pull it? Right?!?? I guess that is the article that Debbie from Dynakids called me about yesterday, she wanted to send a NY times reporter to my house to take my photo for the story, except I don't live in NY anymore.

Wooo-hooo!!!! This is fantastic news!!!!!!!!!!!!!!!!!!

cnm- thanks for all of that info, I didn't realize that there was a pill that I was able to take. My doctor said that if I decide I want Mirena I have to come in first for some kind of test to make sure that it will fit, that sometimes when a woman has not had a baby they are not able to get it in. Do you know much about Implanon or patients experiences with it? At this point just based on everything I have read I am leaning towards the Implanon because it sounds less painful and I do not have to have a test before the insertion, and from all of the horror stories I have read online, the Implanon sounds like the lesser of the two evils. I know it probably sounds stupid to some of you, but the weight gain is truly my biggest concern.

It is really interesting that my doctor will not use a copper IUD on someone who has not been pregnant before, it sounds like that is a very old-school way practice. As much as my decision to not have children is made, I do think that if I do either the IUD or Implanon that in another 3-5 years I will be more accepting of my decision and at that point ready to do something permanent.

I will probably have someone drive me to the procedure (which ever one I decide) and take the day off from work just to be safe, if non-POTSY's get dizzy and crampy I assume I will feel pretty bad after the insertion.

I just got a phone call from Debbie who runs Dynakids, she said the NY times is writing an article about this whole Midrodrine issue and they were looking for a patient in NY to come and take a picture of. Unfortunately I no longer live in NY so I am not able to do it, but the fact that the NY times is running a story on it is definitely a good sign.

I saw my gyn a few weeks ago to talk about BC options. I was on the pill for years but because of a blood clot I am not allowed to take it anymore. My only options are methods that are progesterone only. I turn 30 in about 2 weeks and I discussed getting my tubes tied and learned that there is another method of sterilization, Essure... I do want to have children, in fact everytime I see a baby I get upset and teary eyed, but based on my health I have made the decision not to have children. Not an easy decision but beyond even passing POTS and EDS onto another person, I still have many days (like today) where I am bed-ridden and there is no way I could take care of another person etc etc... All of that being said, I started to do some research on Essure because I have issues with anesthesia so getting my tubes tied is not really an option and I got really upset everytime I read about it, I guess even though I have made the decision not to have children actually doing to something so permanent is a scary and very real decision... My doctor said that what ever I decide is ok but she would feel more comfortable with me doing something that is long term but not permanent. She told me that I am not a candidate for the copper IUD because only women who have had children can get it (which is interesting because a few people on here mentioned having it and not having kids), so that really leaves Mirena and Inplanon as my options.

My doctor said that she has about 30 patients currently who have Mirena and none of them have gained weight or had any issues, then I read all of this horrible stuff online about people gaining 30lbs from it, getting severe depression, debilitating fatigue etc.. My doctor said that was all veyr rare and did not seem concerned... I am not ok with gaining weight from BC and I can not handle anymore fatigue so I am nervous about Mirena... hoping someone with POTS can share a good experience with me... the other option, Inplanon, is implanted in your arm for 3 years. My doctor said she has less than 10 patients who have this, but again said none of them have any problems, no weight gain etc.. and of course online I found a ton of horror stories.

I would really like to make a decision as soon as possible, if anyone has experience good or bad with Mirena, or Implanon please let me know... and if anyone has gone through the Essure procedure I would like to hear about that too.

Thanks!

Hello again fellow POTSY's, I just wanted to let everyone know that the Summer newsletter is posted. You can follow the link in my post below or go to:

http://www.dinet.org/newsletter.htm

Keep an eye out for the Fall issue around November, happy reading!

Good point, I don't sleep well either.. and if I have any sort of caffiene at 2pm then I do not go to sleep at all... ugh.

Reen- that makes me wonder, if all of this midridone info is true and it goes buh-bye, I wonder if adderall is a suitable replacement for it. The way that Dr.Grubb has explained it to me is that adderall and midrodrine are made out of the same compound but adderall has an added stimulant in it. I am going to leave a message at his office now and see if I can get anyone on the phone.

I am going to email them... I will wait until later in the evening so I am slightly less brain-foggy and I can write an email that makes sense and sounds intelligent.

I already get it in 90 supplies... did your cardio have any other info?? I feel like we should all put emergency calls into Dr.Grubbs office, not that he can do anything but I am at a loss for ideas.

I take 10mg oft the adderall XR and then once I feel like that is starting to wear off (which is usually around 1pm..depending on how early I take it), I switch and take 10 mg of midrodrine every 3 hours. The adderall makes a huge difference for me, the only thing, which I have never noticed is my bf always knows that I have just taken my meds because he says I talk a mile a minute for a little while right after I have taken the adderall, but it doesn't make me feel jittery or anything. Mornings are by far the worst for me and the adderall seems to make enough of a difference for me that most days I can get up and take a shower (sitting down of course), but I still have days like today that I am bed bound.

Ahhh me to... I take it every 3 hours.... What are we supposed to do????????? (Panicking!!)

NNNNNNNOOOOOO how is this possible? I take it every 3 hours... No, no, no!! Can we start a petition or something.... OMG... What are we supposed to do!!!!! Ahhhhh!!!

Thanks, I will have to check and see what different kinds of probiotics I can find, I can't stand yogurt or I would add that to my daily diet as well.

I am trying to be positive as I write this and thankful that unlike a lot of people in the world, I am not suffering from a life threatening illness and that some weeks I am even able to work 40-60 hours, although then I have days like today where I am stuck laying in bed... I tried to read and couldn't focus on the words, and even showering sitting down in my shower chair made me feel the way I imagine I would if I were hit by a truck...

POTS has made me lose a lot of friendships, although it makes me sad.. I also think that those people who I called friends were not truly friends if something like an illness that is completely out of my control, made me lose those people...and I am thankful for the true friends and family members who I am sure get frustrated with me but are still here for me...

The one thing that POTS has taken away from me (Ehlers Danlos and my family history plays a part too), is having children. I never ever considered that for any reason I would not be able to have children. Although I am physically able to conceive after many discussions with my doctors etc, I have made the decision that for many reasons, it would not be fair for me to have children and there would be no way for me to raise them... I don't know anyway to describe it but to say that it really, really *****. Every time I see a baby I still get teary eyed. I know that it has to be that way, but it does not make it any easier. So for that reason alone.... I hate this illness.

A few less important things POTS has stopped me from doing: laying in the sun, traveling, going to grad school, volunteering.