Stace915

Just a reminder that logo contest is still going on and will run for one more week. Put your creative thinking caps on and send those submissions before time runs out. If you missed the post the first time here is a copy of all the information: DINET Logo Contest! We are happy to announce a new contest for DINET members to create our new logo! Since DINET has undergone some big changes in the last few months, including the production of our first documentary (coming soon), an overhaul on the newsletter, the search for a new President, etc. we thought it was time to update our look and re-design our logo. What better way to do that then have our members submit their ideas and vote on the winner! Here is what we are looking for: For you techies out there, submissions should be high-resolution files at 300 dpi and preferably a pdf and/or jpg file. No worries if you don't know what that is, you can still participate! Please be aware if your design wins we may need to tweak it so that it can be used on all of our material but it would still look exactly like your design. If you would like to hand draw your submission, please scan it and email the scan. Also, please be aware in order for hand drawn logos to be used on our materials it will have to be cleaned up slightly and tweaked so it can be saved in various formats. Here are the rules: -Please only use shades of blues, grays, black, and white in your design. -You may submit more than one entry. -The logo should include the full name of the organization "Dysautonomia Information Network" or "DINET" (Dinet will probably work better). Beyond that be creative, have fun, and remember that this logo will not only be used on the website and newsletter but possibly on other promotional materials and merchandise such as letterhead, t-shirts, brochures, etc. in the future. We will be accepting submissions through October 1, 2009. On October 1st, we will pick our top 3 choices and post them so all of our members can vote for the favorite. The winner will receive a copy of our documentary on DVD, a t-shirt, and a bracelet. The two runners-up will receive t-shirts. Please send all submissions and any questions to Staci at: SRobynDesign@gmail.com We look forward to seeing your ideas and good luck!

I have 2 tattoos, one was before POTs but the second one was about 3 years after my dx. Its very small and just a black outline on the outside of my foot right by my ankle. I got dizzy but I always get dizzy so I really don't think it effected me much. My only suggestion would be to really push fluids before, during and after. POTs stops us from doing enough things we want to do in life, as long as your SURE about what you want to get... I say go for it (I do recommend you have someone drive you in case you have an episode!)

I had a series of 3 of them about 8 months ago in my wrist and it didn't effect my POTs at all.

Hi Nancy, I think everyone who has responded to the post so far has said it right, unfortunately we have all felt that way. I am 28 (29 next week, yikes!) but I was 24 when I was diagnosed. I was living in NY, working for a magazine...pretty fresh out of college and things were going well. I was thinking about going back to grad school and hoped to get to Europe in the next few years and then one day and boom, it seemed like it was all over. I was angry and confused and I agree that in a way it is like grieving. I have been through all of the emotions, from why me, this isn't fair; to I would rather be dead than feel this way and have to relay on other people; to being thankful that I do not have a disease such as cancer... and believe me in the last almost 5 years I have revisited each of those emotions MANY times. I don't understand how there are people out there who suffer with this illness and say they never felt depressed, or wondered what was next and say that they were just happy it wasn't worse. Maybe I am not that strong who knows but what you're feeling is normal. I have improved a million percent since I first got sick but I still am far from "normal". It took a while but I was finally able to find a job still doing what I love to do but that offers me the flexibility to take a week off at a time if need be and I can't get out of bed, and to work from home if I can't stand that day but feel better laying down etc. Try to be patient and know that everyone on this site is always here to listen and offer advice and has been a life saver to SO many of us!! Good luck and keep your head up!!

I would recommend that you go to a sport goods store and try out a recumbant bike first. I went to try them and even thirty seconds was too much for me --wahhh

I just got off the phone with the insurance co, they said the next step is having the genetic specialist send a letter of medical necessity so I am waiting for the geneticists counselor to call me back and laying in bed feeling like **** today. I guess this never ends!

Having children or not has been a BIG issue for me the last year or so. I am not ready to have children yet anyways (want to wait until I am married if it was going to happen and still waiting for a ring) but it is something me that my bf and I have discussed a lot. I discussed it with Dr.Grubb in detail and I was mostly concerned about the possibility of passing down POTS and/or EDS to another human being and could not live with myself if someone else ever felt as sick as I do most of the time and knew it was my fault! He was actually not as concerned about that but more concerned about how I would take care of an infant and then an older child when a lot of the time I have weeks at a time that I can barely get out of bed, can't drive etc. Yes I would have support from my bf who at that point would be my husband BUT he is only one person and can not be home 24/7 taking care of a child, or waking up for feedings in the middle of the night etc and still work fulltime to make enough money to support us and keep a roof over our heads. I have ALWAYS wanted children and I still get upset every time I see a baby when we are out but in my situation, I have decided that as much as it kills me, it is not fair for us to have children and my bf is okay with that. He is really concerned about pregnancy also making me sicker (which it could or could not, and we wouldn't know until then). We discussed adoption but an adopted child still needs to be cared for. My Mom hasn't really accepted that I will never give her grandchildren and has already said she would be willing to move closer to help out but I said no. If I have children I do not want someone else raising them...now I also have the very real possibility of having yet another extremely serious disease, fabry. If it turns out that I have it the testing for that is done on the embryo...and without getting into details something that I am not comfortable with. I think this is a VERY personal decision for everyone sick or not and that there is a lot that goes into it and a lot of variables. I don't think that my decision is the right answer for everyone with POTS by any means but for me, unless something changes greatly it is.

Just wanted to let everyone who hasn't read it yet that a new edition of the dinet newsletter is now available. On the main dinet page there is a link to newsletters and it should be the first one on the list

The genetic counselor called me a few days ago, she said the first test came back "inconclusive" but on the border and abnormal. I asked what other reasons the enzyme level would be abnormal and she said there is nothing that they are aware of. They attempted to get the next test covered by insurance but they said without a male in my family having a confirmed diagnosis they will not pay for the test (it would be $4000 out of pocket!), I have to call them again tomorrow and try and get it covered because I am not in contact with my father so there is NO way for me to find that out. Once the second test is actually run (its a DNA gene test) it will take another month for the results... I don't have a good feeling.

I started taking Miralax a few weeks ago as well and have had good results and it has not caused any cramping, pain, etc etc.

Hello all, sorry its been a while but I am back with an update. So the week before my surgery was scheduled it just happened that because of canceled appointments I finally got to see the geneticist 5 days before my surgery for a full genectics counseling etc session.. about my EDS and I was just told to go for an overall workup. Well I am still waiting to her about the fabray test (I posted something on here the day of the appointment about that). Anyways I found out that my bleeding times where abnormal and in order to have surgery I had to get this very specialized medication to reduce the risk of me bleeding and brusing too much.. well I found this all out the day before surgery VERY long and stressful story short, I ended up almost canceling the surgery and last minute got the drug that was supposed to cost me $816.79 out of pocket for $60 delivered to my door at 7pm the evening before surgery!! The surgery itself went PERFECTLY! They gave me an extra iv bag of fluid before and after surgery and they said my BP and HR both behaved perfectly!! So great, I was so relieved that everything went well... of course I spoke too soon. The following day all day I was in a lot of pain my right breast and right arm, later that evening my Mom and boyfriend were looking at me and said the right one was swollen 50% more than the left! I was completely out of it and on pain meds plus in so much pain that the next few hours are a bit of a blur. I know the doctor said to get to his office asap and we went and the minute he lifted my shirt he said get her to the hospital ASAP. I will met you there... I vaguely remember walking into the ER holding an ice pack and when my mom told me to sign in I said something stupid like didn't she know this was the ER and we would have to wait there for hours until they looked at everyone else (I was really out of it!). Well I signed in and the nurses responded, she is her..get her back! Within 5 minutes of walking through the door I was hooked up to an IV and being wheeled into emergency surgery! It seems that 1 in 500 breast augmentations have a blood vessel burst after the surgery, it has nothing to do with how the surgery went but is basically a freak complication and guess who the lucky winner was!! They had me in surgery for about half hour (or so I am told). they had to clean out all of the blood etc, take the implant out and then put it back in when everything was cleaned up. They sent me home that night and due to surgery two days in a row and anethesia two days in a row, I was in an awful "pots hole" for 3 days with the worst migraine of my life that imitrex and furicet couldn't even touch, and I could barely lift my head! It was a terrible 3 days... but I am writing 7 days after the second surgery and I am doing MUCH better!! Tomorrow I go back to work (not driving myself just to be extra safe), and I am back where I should within the healing process and just sore now. What a week!!! Thank goodness everything is ok, and now I have a perfect new chest Was it worth it... ask me once I am all healed!

Lex, start doing ankle pumps if you are sitting for a while. I do it all the time when I am at work and its good because no one knows I am doing anything either since my feet are under the desk. Hope you're feeling good!

Thanks everyone for your support. I am trying to not think about it until I hear back from the doctor. I will post an update when I have some news

I went to the genetic specialist today and after a few hours of clinical diagnoses, counseling etc... I ended up having 7 (yes 7!) tubes of blood drawn and the possibility that I have yet another rare disease called Fabry. I was just curious if anyone here has been tested for this or even has it. They gave me a lot of information to read and of course I sat in the parking lot of the hospital and read it in my car and cried. It is going to take a while before any of the testing comes back so I am trying not to think about it and to stay positive....but I would be lying if I said I wasn't really worried about it.

I actually go see the geneticist tomorrow for the first time so all of the info about the unstable neck etc causing the nausea is really interesting. I will make sure to mention it!

Wow thanks for all of the suggestions. I would have never thought to take benadryl for nausea... unfortunately it makes me go right to sleep but I guess I could try taking it before bed and see if that helps.

Does anyone take anything to control their nausea? It was never a chronic problem for me and the last few months it has become one of my biggest complaints. I am going to make an appointment with my pcp but I don't even know if there is a drug out there that controls nausea? I looked on line and some derivative of marijuana kept coming up but nothing else. Since I am on so many other meds I like to look up new ones before I add them to the mix so if anyone knows of any please let me know.

Hi Bella, Adderall is very similiar to the ritalin and concerta that you have taken. Grubb said that some patients don't tolerate adderall and because concerta is so expensive the insurance companys will make you try everything else that is similar to concerta before they pay for it. I guess I was lucky that the adderall made a difference for me. The mornings are the worst for me so it helps enough that most days I have enough strength and energy to get out of bed and work. I would assume that since you have already taken similar meds the adderall would have the same effect on you that the others did but I don't think that you can take adderall and ritalin at the same time... I assume you would crash! I take 10mg of the extended release when I wake up and then once I feel like that is wearing off (usually around 1pm) I start taking 10mg of midrodrine every 3 hours until a few hours before bed. How did you teach aerobics with POTs? That is incredible! Good luck at the doctor

Wow this sounds really promising...I am very interested to hear how the trials go!

I started with 2.5 mg every 4 hours... then I guess I built up a tolerance and was increase to 5mg, then to 10..then I started to feel even worse when I took it at all. I was off of midrodrine for about a year and then about 2 years ago we tried it again. Now I take 10mg every 3 hours, starting at about 1pm and I take adderall xr as soon as I wake up with the other medications and I absolutely feel it if I am late with a dose and can usually tell within a few minutes that it is time to take it again based on how I feel. Dr. Grubb prescribed me adderall, my local EP had never heard of using it to treat POTs but spoke to Dr.Grubb and found out that it is basically the same chemical compound as adderall but I think they said there was an added stimulant (or something like that). Anyways, midrodrine is by far a miracle drug BUT without that and the rest of my medical cocktail I can't function..and it has been a big big help!

Hi all, so here is an update. I went to see the plastic surgeon and we discussed everything about my health and he was very thorough and shockingly had heard of POTs and EDS. We discussed everything for over an hour and he said that due to me having EDS the implants could move very slightly because my skin is stretchier.. but so slightly that it would not be noticeable not that they would end up on my back lol. We left things that he was going to speak to the head of anesthesiology at the surgery center and was going to read up on some of the recent POTS info but that he didn't foresee it being an issue. He said I was a challenge and he liked challenges. I assumed that he would want to do the surgery at the hospital so a cardiologist would be on hand if necessary, he also said that instead of general anesthesia an epidural was an option. Generally the anesthesiologist doesn't know anything about the case until they walk in the day of surgery. In my case he said he would first get approval from the top guy and then hand pick the anesthesiologist and explain everything so they could give him an okay and be very familiar with my case. I told him that if anyone had any hesitation than to please let me know, and in that case I would not go through with the procedure, and that if everyone is 100% comfortable with it then whatever they thought was best I would do (hospital or surgery center, epi or general). It took 3 weeks for me to get a call back from the doctor but they finally called this week! The doctor himself got on the phone and he said that the head of the surgery center and everyone else was ok with me having the surgery done!!! They said to do it in the surgery center because there is much less chance of infection and that they recommend general anethesia because the epidural effects the flow of the blood or something along those lines and they thought that would be riskier. SO I was going to wait until September when the Summer heat and humidity had passed but based on my schedule and the doctors vacation I scheduled it for August 13th! OMG... 3 weeks!! So I am all scheduled, I go Friday morning for all of my pre-op stuff, they will give me a prescription for anti-biotics for after the surgery etc.. and they just asked that I have my cardiologist send over his notes from my most recent appointment and they may call him. I am really really excited but nervous also, not so much about the procedure but about how weird it is going to be to wake up having my body look different than it has my whole life! My Mom is coming in from out of state for a few days to help take care of me so my boyfriend does not have to take too many days off. I will keep everyone posted after the pre-op appointment and after the surgery. Yay!!

Oops I meant to add to that... she has said great things about him and even suggested that I go see him all the way from Ohio so if you can handle the drive, I say go for it!

I haven't but I know that Alexia, "worththewords" has met him.

Yup.. my mother has used the "look white as a ghost, go sit down now" line many times and occasionally she says I turn green!

Bella, I just saw this topic. I have instant messenger and ichat but don't ever use either of them... I don't think anyone would want to see me in a video chat in the middle of the night haha. Let me know if you guys figure anything out. Like I said many nights I am up wishing there was someone else awake to talk to!