Stace915

Since we are on the topic.... I have never mentioned this to my doctor, well because I didn't think my GYN would have the answer and I am not comfortable talking to my cardiologist about it. I have fainted a few times during sex, which of course is awful but luckily its been a while since that happened. However lately I have noticed that after the, what are calling it.. "big O" the lower half of my face goes numb, well not really numb I guess it get tingly/numb. It wears off after an hour or two but its really odd feeling.. it freaks me out a little. Does anyone else get this? I wonder if it is related to POTS or EDS, I know a lot of people talk about neuropathy but I honestly don't know what it means...is this connected?

I just had a thought, what if we carry a nerf gun or some kind of toy gun that shots something soft (so we don't hurt anyone) and whenever someone gives us a dirty look or is rude we can just shot them lol. It would catch them off guard and make us feel better haha!

Persephone- Thats awesome, I would have loved to see peoples reaction! It seems a lot of people just do not have any common sense (shakes her head in disbelief)... I should add that although my experience with other people visiting the theme parks was not very pleasant the staff at Disney was really accommodating. The second day there my sister told me that I could get a special access pass (I don't remember exactly what they called it), but we went to guest services office and I expected that I would have to give a long song and dance and explain the illness and even have them speak to one of my doctors... however as soon as I started to explain the illness the guy helping us stopped me and said I don't need to know what your illness is or any details, my job is to help you..so you tell me what can I do to make your experience here easier. I was shocked and I said oh well, I can't be in the heat for long periods of time or standing for more than a few minutes once I get out of the wheelchair so if there is anyway that I can move to a different line for each ride or move somewhere that I am at least out of the direct heat that would be great. He handed me a pass that allowed us to by-pass all of the lines, they wheeled me as close to the ride as they could and helped me from the chair onto each ride and had the chair waiting for me when we exited. At least there are some courteous people left in the world Time to try and get some sleep... good night all!!

Haha I like what your hubby said! I don't know if they all look the same but the ones that I have are white and go from my feet where there is an opening so about half of my foot sticks out to the very top of my thigh and they have some blue writing down near the bottom. They are hideous!! I still have them but I do not ever wear them because I don't notice any difference with them on. My doctor had me try them for a few weeks straight, I didn't see a difference so then I stopped and tried them again in the summer because the heat makes me feel much worse. Honestly I was even worse with them on in the summer because all they did was add another layer of clothing, plus I couldn't wear a skirt or any type of cropped pants or you would see my lovely white bandages and because they covered half of my foot I even had always wear shoes that completely covered them so I had to add more clothes and then have these tight things under my clothes which made me even warmer and in return feel worse. I have tried them here and there for about a week at time a few times but I still haven't gotten any relief from them so my doctor said not to bother.

I would suggest that you try and take him off the thermotabs and see if that helps. Instead you can try things like boullin cubes in hot water (you get used to drinking it)...depending on how many of the thermotabs he takes a few cups of it throughout the day , or gatorade with salt in it. I used to take the thermotabs, in the beginning they didn't bother me at all, then they started to make me nauseated every time I took them...now I can't take them at all. I vomit immediately after taking them and the weird thing is even if I have a full stomach all that comes up is the thermotab and water no food. They are really difficult on the stomach. I have also found that heartburn/reflux medication seems to help me.

Maxine- I have a handicap parking tag also and I use it the same way that you do, on days I really can't walk and when I am up to walking I don't use it. I have gotten used to elderly people giving me dirty looks when they see me get out of the car and walk and probably assume that I am using someone else's parking tag (I also have a remote start and it is so so so wonderful!) and I actually went to the zoo in September and I ended up missing 3 days of work the following week because I pushed myself too much and had to recover.. now I wish I would have used a wheel chair at the zoo as well! I guess regardless of where you are, you will run into ignorant and obnoxious people! Honestly the thing that my experiences at Disney made me think about the most was not that I was treated poorly but that so many DINET members are in wheelchairs full-time (and so many people in the world in general) and it is terrible that people have to deal with being treated this way everyday of their lives! It really made me angry for them... Since I can't change the rest of the world, I know I will be even more courteous, helpful etc when I see someone who is disabled.

Love this.. Do you mind if I copy it and email it to a few people?

(I wasn't sure if this belonged here or in the other forum section). I am actually writing from an airplane! I didn't know there was now internet access on some flights... so cool. Anyways I am on my way home from a weekend in Orlando where I was visiting my sister. I do not do well in the heat and humidity so I waited until the coolest time of year to visit her. My sister is an intern for disney so she really wanted me to go to the theme parks with her... of course I was really hesitant due to the heat, humidity, tons of walking and rides. Our first stop was the Magic Kingdom... I could not even make it from the parking lot to the main gate so I swallowed my pride and agreed to use a wheelchair. Wheelchairs have been something that I always avoid because I feel like I need to push myself and push and push and that I should not be in a wheelchair no matter how I am feeling because I am letting my illness win and it makes me feel broken and helpless... and I didn't want to deal with ignorant people staring because I look fine and do not look sick. Well as our day went on, I realized that I had been making a big deal out of using the wheel chair for no reason, I was able to be out with my sister all day and even go on rides because of the wheel chair and without it I wouldn't have been able to do anything and I quickly got over my "fear" and hesitation of using one. The first hour or so I encounter a group of teenagers staring and me and whispering and laughing, I also encountered many people looking at me and then looking at my feet and looking annoyed (I guess they were looking for a cast or injury or something)... Seeing all of this started to get me annoyed. I look like a normal twenty-something year old but there could be so many illness, injuries problems that someone has that requires the use of a wheel chair and I couldn't believe that people were so ignorant and laughing and little did they know that I literally could not stand up and walk without either passing out or having severe tachycardia...it made me wonder how these idiots act when they see someone with a mental disability. As the day went on I was absolutely disgusted with people! I had MANY people walk directly in front of me while my sister was pushing me in the chair, a ton of people literally just stop walking directly in front of me when they clearly saw me there. I had one woman actually try to squeeze around me with a tray of food rather than walk around when there was plenty of room next to her and she pushed me and the chair looked and me and walked away (my sister had left me "parked" for a minute). You would not believe how many people had a complete disregard for the fact that I was in a wheelchair and gave zero respect to a handicapped person. I kept my mouth quiet about it because I figured there was no use in complaining but then my sister said something to me about it... oh how about the guy that was holding the door for his wife saw me, looked right at me and proceeded to let the door slam on me! I could go on and on... but I think I made my point! I am getting aggravated just thinking about it. My point is that is was truly amazing and disgusting the way that most of these people acted and made me embarrassed of the human race. I hope that those of you that use wheelchairs, whether it is occasionally or everyday never have to be treated in such a discriminating, disrespectful and terrible way...and for those of you reading this who may have feelings like I did about using the wheelchair and it making you feel defeated, I can say it really was not a big deal. It made it so that I was able to spend 4 days in Florida. Yes I still felt terrible but it was the only way I could have made the trip and was absolutely worth it!

I am the same way... much much worse the week before my period starts. That is also the time when I get severe, I mean the worst pain you can imagine in both of my legs...multiple doctors have told me it is just due to the hormone levels and that when my levels are like that something with the blood flow upseting the EDS which is why my legs get so bad. Sorry that was not a very technical answer but I think its pretty common that woman have bad epsiodes and pots flare ups around that time of the month.

Does anyone that takes erythropoietin get their insurance company to cover it? I discussed the possibility of starting the shots soon because we have tried every other option. My electrophysiologist has never used it for treating autonomic dysfunction and is going to call Dr. Grubb to discuss it more with him (I see Grubb as well) but he said the he doesn't think any insurance companies cover it for use of treating POTs only for treating enema and kidney issues. I know it is very expensive so before we even go further with it I needed to see if there is any chance of insurance covering it... and I am sure they will need diagnostic codes etc if I call them directly to try and find out. Also is the "average" treatment a weekly shot or monthly?

Yes he is a wonderful doctor, and because of all he has been through with his own health he is very understanding and sympathetic, at the end of my first appointment with him which by the way was 4 hours, he gave me a hug! I have never in my life had any doctor spend even close to that amount of time with me... My last few appointments with him have been canceled so I have just been going to my local electrophysiologist, as a matter of fact I had an appointment today and my doctor actually said to me " I've got nothing" after we talked about how I have been feeling and what we have tried and said "when do you see Dr. Grubb next"... not what I was hoping to hear but it seems like at this point he does not know what else to do with me or what is left to try. He is going to put a call into Dr. Grubb and see if he will speak to him and has any suggestions to keep me functioning until I see him next. If you can't get into the city to see Dr. Pecker its worth a try to look into the NJ center for fainting, I don't remember where it is I think it was North Jersey somewhere but the info is in the last newsletter.

Naomi, I have seen a lot of doctors and would say Dr.Pecker is one of the few that I would recommend. Is not a miracle worker but he did have suggestions for me that other doctors had not thought of and he was always very thorough when I saw him.. he would even have me walk the hall by his office back and forth (as much as I could) and take my pressure and heart rate each time I made it back to him. He hospitalized me at one point because my medication combo was no longer working and he didn't want to just give me new meds to try without being monitored since we had no idea how my body would react.. so I will in the hospital about a week and was able to try a few medications at different doses to see how my body reacted. I now see Dr.Grubb and another cardiologist who is closer to where I live for my "maintenance" but if I was still in NY I would have continued to see him.

I live in OH now, but when I lived in NY I saw a doctor at Columbia Pres who was a dysautonomia specialist and he was wonderful. I think I got his info from the physicians list here but I can't really remember. His name is Dr. Marc Pecker, 212-746-2210. He will require that you send over records because I don't think he takes patients unless they have already been diagnosed but I would highly reccomend him! And just a warning his receptionist is VERY chatty. Also I know that the new doctor Dr. Tullo, his info is in the last newsletter is somewhere in NJ and is part of a specialized Fainting group. Let me know if you need anymore info on Dr. Pecker (yes I swear that is his name)

I tried smoking a hookah once since I have gotten sick with POTs and it was a BAD idea. I am not a smoker in general but a friend owns one and took it out one night while I was at his house. I could not even stand up after I smoked it and I felt like I was stuck in a major POTs episode the rest of the evening... I am very surprised to hear that it made you feel good! I guess as long as it is helpful keep doing it but it was definitely a bad bad idea for me.

Hi everyone, the Fall edition of Dysautonomia news is up for your reading pleasure! You can find it under the newsletter tab on the main dinet page, and it is the first one listed or go to this link http://dinet.org/newsletter.htm and again its the top one. We are all working hard to get the next edition completed by the beginning of January just in time for the New Year. Also thank you to everyone who submitted a logo design for our logo contest. The contest is now closed and we are working hard to narrow it down to our favorite 3... the top 3 should be up in the next few days for everyone to vote and pick their favorite. Thanks again for all of your submissions!

The doctor actually said that he didn't think I would benefit from either drug. He said that he pain is all from EDS (we were waiting on results to see if anything else was causing it). He told me to start on 500mg a day of vitamin C, that sometimes people find a reduction of bruising when they take vitamin C. As for the pain, in the past I have been on skelakton, percaset, darvaset.... the list goes on and the only thing that helps at all is advil. He said that based on that he thinks advil/ibuprofen is going to be the only thing that gives me any sort of relief (it doesnt help much but it is something) so for every day he wants me to stick to the advil as long as I don't mind that I will have extra bruise... amd he wants me to start doing a combination therapy 8 days before I get my period and continue it all the way through my period of advil and then tylenol between the doses of advil but said its very important to start that combination therapy before they said to get excruciating due to PMS and to make sure I continue all the way through. I am going to try that for 3 months and then see him again.

One more thing... everything I did find about neurontin says that you should wear a medical bracelet stating that you are on an anti-seizure medication.. does anyone that takes it wear a bracelet? I am not understanding how an anti-seizure drug helps with pain?

I have an appointment with my hematologist tomorrow, he is now treating my EDS instead of a rheumi. I was going to mention Lyrica to him and see if he thought it would help with my pain. My pain is generally centralized in my legs but is so severe I have gone to the ER before and gets worse before my period. Thankfully I got my results back after 9 weeks of waiting and I am negative for Fabray disease, which is such a huge weight off my shoulders!! The only thing was in a way Fabray would have explained the pain in my legs and the bruising and I have been told there is a very specific pain medication for the Fabray pain, or what they call Fabry "crisis". So now I am back to assuming the pain is just from my EDS and the doctor had a good explanation of the bruising ie: the thinness of the skin, your legs have the most pressure all day etc... but now I am also back to trying to find something to reduce the pain. I have tried a ton of things from advil and aleve to narcotic pain meds and nothing provides any relief. I keep reading that Lyrica can have some really bad side effects but I saw a few people mentioned a drug called neurontin. I did a search and did not find a ton of info, does anyone take this for pain associated with EDS? Anyone know what the drug is actually intended for? Any common side effects? Just wondering if it is something worth discussing with the doctor tomorrow.

Hi, I have seen both Dr.Grubb and Beverly. If possible I would recommend that you wait until an appointment with Dr.Grubb becomes available instead of seeing Beverly. Don't get me wrong, she is very knowledgeable but after seeing them both, she doesn't hold a candle to Dr.Grubb. I only go to her now if I need prescription refills, beyond that I don't think it is worth it to see her. I wish that Dr.Grubb would train another full doctor for when he retires... he is so knowledgeable and because he has dealt with serious illness in his own life he is unbelievably compassionate and understanding and I didn't get that from Bev. It was more that she was just following up and like she was doing my "maintenance" until I could see him again.

I love the gatorade margarita idea! Its perfect because you still have the frozen drink feel and even the salted rim of the glass. I think I am going to have to try those soon!! Green olives (which I love) are very high in sodium, another good one that is quick and easy... I can't think of the name of the brand but I know trader joes and the regular grocery store sell it, is this little cup of soup type thing but its not soup I guess its more of a veggie chili and all kinds of other vegetarian soupish meals. Its a small cup and you just add boiling water to it but it tastes much better than a rameen noodle type thing. Anyways it has the highest sodium level of anything I have ever seen. Sorry that probably wasn't much help without a name!! I also put one packet of salt per bottle/glass of gatorade. I used to do the salt tablets 4 times a day but one day I started vomiting them up and haven't been able to keep them down since then, for a while I would also drink broth like it was tea. I got the vegetarian boullion cubes, they take a little while to get used to as a beverage but they did help, and I always keep pretzels and salt packets on hand (they are in my car, my desk, my pockets etc) and I salt pretty much everything that I eat, I have actually grown to love salt and pepper on my salad!

the hemo. had me to do a little test and told me not to take advil for 2 weeks (generally take it daily), I definitely noticed that my legs were less bruised. Unfortunately it is the only thing that helps my pain, not even prescription pain killers so I started taking it again. I take florinef as well, I never heard that it caused bruising. I will let everyone know if I learn anything new when I see the hemo next and get my results from the von wille test.

I take 10mg of adderall every morning with my other medications. It help tremendously! I have been taking it for about year, Dr.Grubb prescribed it originally...however I was taking midrodrine for years before I started the adderall and they are the same chemical makeup. I think the difference is the ritalin has more uppers? Now I take the adderall xr (extended release) in the morning and then when I feel like it is starting to wear off (usually around 12-1pm) I started with 10mg of midrodrine and take that every 3 hours for the rest of the day. I can absolutely feel when its been 3 hours or is getting close. I haven't noticed that either the adderall or midrodrine has made my tachycardia worse and some days a cup of coffee makes me feel slightly better, some days it makes me feel really really sick... so I usually have 2-3 cups per week.

Me me!!! I wake up every morning with new bruises on my legs. I get them occasionally on other parts of my body but literally every day a new one appears on my legs. I have EDS and was told that it is because of the thinness of the skin, and that it causes easy bruising. I recently went for my first appointment with a hematologist (my cardiologist recommended it for treatment of the EDS). I can't remember exactly how he explained it, but something about the legs bruise the most because that is where the majority of your blood is through out the day when you are upright... again I don't remember his exact explanation but it made sense when he said it! I go back to him in a few weeks to discuss things further but last time I saw him he ran a bunch of blood work and was looking for something called "Von Willebrand". He said that is it a bleeding disorder that is very common in people with EDS and that it is basically like a very mild form of hemophilia. I also know that my bleeding time test was abnormal. I haven't noticed a difference but the doctor said that sometimes patients who have this disorder and the severe bruising notice that increasing their vitamin C, just with a daily supplement causes a reduction in bruises. Hope this helps!! -Staci with bruises all over her legs

Melissa, I completely understand how you feel, I was in a long relationship when I got "sick" and was diagnosed. I was living with my now ex, and it was just too much for him to handle. In the beginning he was great, went to all my doctors appointments and tests and then it was like he just couldn't deal with it. Things endly very badly, and the last time we spoke was when I was in the hospital for a week and he never showed up and called me while I was there... that is a whole other story for another day!!! But anyways, I was single for a while after that, and then I started dating a little and I remember going out with one guy who was really into snowboarding. The whole time I was out with him all I would think was, what is he going to do when he finds out I can't go snowboarding with him, and I wondered do I tell him now in which case I was sure he would be done with me or do I let it go for a while... Well I let it go for a little while, and I remember we were out to dinner and he ordered a drink and I just said I had some weird medical stuff and I wasn't supposed to drink. We didn't date for very long but I just felt like everything he liked to do where things I liked to do, but couldn't... go running, snowboarding, go to the gym, go out drinking etc. etc... Yes there were other things he liked to do but honestly every weekend he was out doing one of these things that I couldn't do!! I felt like I would just be burden and a reason that he could never do anything he loved to, because it was either see me or go do those things.. I couldn't do them with him. It ended pretty quickly and I started to feel like you do, that I was nothing but a burden on people. I met my current boyfriend not long after that, he was a friend of a friend. I didn't know how to tell him about POTs and explain it all and I figured once I told him, he would run for the hills. We are going on 3 years now, and living together. I told him pretty early on that I had this chronic illness, I actually wrote him a letter that explained everything (to the best of my ability) and then had him read it while I was there...and said ok, ask me whatever you want to about it! From that point on as we started to spend more time together he started to see more of me being sick. It got to the point that if we spent a whole day and night together, he knew I really couldn't function without a nap, and learning little parts of it slowly. Now he has seen all of it, my "good" days and my weeks where I can not get out of bed. Believe me there have been many times that I wish he never had to see me like that, like when he had to pick me up out of the bathtub, I felt like he was responsible for his gf that looked like a 28 year old but acted like an 80 year old!!! I still to this day get really upset when he has to do things like that, I have told him many times that it is NOT fair that he has to take care of a sick person, and that he should leave and be with someone healthy and normal. Of course I do not want him to leave, but I feel like such a burden sometimes and like he deserves to be with someone that he doesn't have to play nurse for.... whenever I say stuff like that he usually tells me to be quiet and that he doesn't care and he just wants me to feel better. I guess what I was trying to say in my long tangent of rambling, is that yes it will be harder to meet someone because of the illness but it is not impossible and I think that feeling like a burden is also pretty normal but don't cover up who you are for someone else, just try to ease them into it. I hope some of that made sense!!

There is actually an ice cream place here (Columbus OH), I am not sure if it is all over the midwest but it is called Jeni's and they are known for having crazy flavors, like merlot, jasmine, chili pepper... anyways the best seller is "salty caramel". When I moved her and someone told me about it was so excited to try it... unfortunately I don't like it but salty ice cream does exist!