babettess

Add-on to previous post- I just searched to see how far Manassas was from Weston and saw its only about a half an hour away. Therefore I assume Columbia will also be too far for her to drive. I travel 4 hours to see Dr. Khurana but my husband drives me. Babette

I would recommend Dr. Ramesh Khurana in Columbia, Md. He is listed on DINET's list of doctors. Columbia is around an hour and 15 minutes or so away from Manassas according to Mapquest. I'm sure that depends where in Manassas she lives. Babette

Do you have Ehlers-Danlos along with PoTS? It can cause significant dental decay. I have so many cavities every time I go to the dentist. Definitely get the numbing med without epinephrine. Also if the dentist uses a pump to give you the numbing med, that will help a lot. Babette

Hi, I can't offer any info on the swelling, but just wanted to tell you that I am a patient of Dr. Khurana's too. He's the first doctor who ever truly listened to me. Hope your appointment goes well and you get answers. Babette

Benny, Just wanted to tell you that I also had a thyroid nodule found during my cervical MRI. What happened in my case was that I had to have a thyroid ultrasound and since the nodule was under a certain size (sorry I can't remember what that was), we just watched it. I had blood work to check out my thyroid function. Then I have had ultrasounds every 6 months for a total of 2 years and now we will watch it once more in a year and if it still hasn't grown, we will quit watching it. Just wanted to tell you that sometimes the nodules are nothing to worry about. Hope yours turns out to be like mine and you just have to keep an eye on it. Also best wishes for finding a doctor to treat your neck issues. Babette

Justin, Just a quick thought. I, too, have hyper PoTS. I originally tried Xanax and found that it gave me the same feelings you are experiencing. I described it as being in an almost constant state of panic. Apparently, some people can have what I think is called a paradoxical reaction to it. Please check with your doctor to see if he/she thinks the Xanax could be doing the opposite of what its supposed to do for you. Many of us are very sensitive to medications. You will have to follow your doctor's advise to get off the Xanax as you have to wean off it. ( If that's what he/she would suggest.) I felt much better after I got off it. I currently take a beta blocker and about 2 months ago started Lexapro which is an SSRI. Adding the Lexapro really calmed down the adrenaline surges and the betablocker keeps my heart rate down. I finally feel like this medication combination is working for me. Best wishes that your doctors will find what works for you and that you will feel better soon. Take care of yourself. Babette

I loved Tai Chi before PoTS hit me so hard. It requires some standing still though which could be difficult for some and all moves are done standing up. It's great for balance and very relaxing, though.

I've heard that one way to explain what its like to live with PoTs is to tell people to imagine what they would feel like if they donated blood and then spent the next 24 hours without food or water running in 100 degree weather. I've explained to some people that when I am in a bad PoTS hole that if my house was on fire that I wouldn't be able to get myself and my disabled daughter out. No one was able to understand that as they thought adrenaline would kick in and make it possible. Of course we all know that if your heart rate goes so high that things go black when you try to stand up that there's no way you could escape from a burning house no matter how hard you tried or wanted to........scary but true when I was at my worst.

This might sound crazy, but have you had your vitamin D level checked? The lower my vitamin D level was the more chest pain I had. My pain was in the center of my chest around my breast bone-a horrible unrelenting pain. Since I started taking a Vitamin D supplement, my chest pain has almost completely disappeared. When I first started taking it, I could tell the day before it was due because the pain would come back and leave again the day after I took it. My doctor increased my dose and now I only have the pain if I forget a dose. I take 50000 IU twice a week. I hope you get relief soon and your doctors are able to find out exactly what is causing your pain. I just wanted to share my experience since it was a relatively easy fix. Babette

Maxine, Just wanted to let you know I'm thinking about you and hope you start feeling better soon. Babette

Maxine, You are in my thoughts and prayers. Hope you feel better quickly. Take care of yourself. Babette

Hi Maxine, I too am having a difficult time recovering from the travel and time spent at the conference and I was only there one day!! I actually spent this afternoon in the ER getting an IV as I was feeling so badly. I think its just going to take us awhile to recover. It was nice meeting up with you. I actually didn't meet up with anyone else from DINET while there but I would have liked to. Hang in there and I hope you here from the NS soon and also that you start feeling better. Babette

Hi Dana, I have had the same problem. If I remember correctly, I think you saw the same cardiologist as me. It took 8 weeks for me to get my test results. I got very few suggestions on what to do to feel better. I feel that I wasted $15000 of my insurance company's money on the tests there. I hate to be negative, but I did not have a good experience there. I found a neuro closer to home that has one exam room in his office who treats me with respect and is constantly trying to help me feel better. . I do hope that you get your results in the very near future and that you get great suggestions to help you feel better. Keep calling them!!! Babette

Maxine, I'm praying that you feel better quickly and that the new neuro surgeon Is able to help you. I'm leaving for Baltimore about 1pm tomorrow. Hang in there. See you soon! Babette

Maxine, You are not going to believe this but I was just bitten by a stray cat this evening. It has been hanging around sine last summer but we have no idea who it belongs to. It attacked one of my cats tonight and my daughter and I tried to get it to put it in a cage and she got scratched and I got bit. I cleaned the wound good and applied an antibiotic. I guess I will be going to the ER tomorrow as it looks like we might be getting tetanus shots and a rabies series. Like you, I am so depressed at this never-ending cycle of one thing after another. My daughter that was helping me tonight also has PoTS and EDs. We were quite a pair trying to get the stray cat caged and the get our cat out from under our steps where she was hiding. Our course we were exhausted after we were done and too tired to make a trip to the ER tonight. So I guess we will go tomorrow. I'm glad your wound is healing. I pray that mine heals quickly too and that my daughter and I don't have to take the rabies shots. With my allergies and sensitivities I am petrified if medicine and I can't imagine how scared I will be if I have to get rabies shots. I think its time I ask for a prescription of something to calm these old nerves along with my tetanus shot and whatever else I have to take. Still hoping to see you next week in Baltiomore!!! Babette

Maxine, I am staying at the same hotel. I am arriving at the motel on Thursday and attending the conference on Friday only. I will PM you. Perhaps we could meet? Good luick finding an easy route. I'm a Maryland Country Girl so I'm not much help when it comes to the city. Issie- to join the EDNF go to www.ednf.org They put out a newsletter and have very good information for individuals and physicians.. I will give an update after the conference. I am so excited to hear what the top EDS professionals have to say. Babette

I am excited to be going to the EDs conference. I have been researching EDs and If it could cause my swallowing difficulties and have definitely found a connection. Since the swallowing problem is one of my worst problems, I am really hoping that issues such as mine will be addressed sometime during the conference. Guess I will have to wait and see! I'm wondering two things: Is anybody else going to be at the conference? For those with swallowing problems-how many of you have EDS? ( I know. Two totally unrelated questions in one post. I'm trying to be efficient and save keystrokes at the moment..) Looking forward to possibly meeting some of you in Baltimore!! Babette

I too am Vitamin D Deficient. My levels have not hit normal yet. I am currently taking 50,000 IU's twice a week and am anxious to see if I am finally up to normal (which my lab considers to be 32-100) at my next check. I have noticed a definite difference in how I feel when my levels are higher or lower. The higher my level gets the better I feel with less fatigue and less muscle and bone pain. I am hoping as my level continues to go up that I will continue to feel better. I am extremely sensitive to medications, but haven't noticed any problems with the vitamin D. It is a natural substance. I take the prescription gel-cap kind that is green and football shaped. I cut a hole in the gel-cap and squeeze the liquid out into juice or applesauce and take it that way. I figure the gel-cap would be the biggest problem if I were to have a reaction so I don't use it. That and of course with my swallowing difficulty I couldn't swallow the gel-cap anyway. Seems there is a connection somehow as many of us are deficient. Babette

And how about adding something about the lack of knowledge among the medical community, the typical treatment of patients prior to diagnosis and the length of time and amount of doctors seen before a patient is diagnosed. I wish you well with writing this article. Please let the forum know when it is finished and where we can read it. Maybe you could talk with the Dinet moderators and give info on listing this wonderful site as a resource. Thanks for helping raise awareness! Babette

And how about adding something about the lack of knowledge among the medical community, the typical treatment of patients prior to diagnosis and the length of time and amount of doctors seen before a patient is diagnosed. I wish you well with writing this article. Please let the forum know when it is finished and where we can read it. Maybe you could talk with the Dinet moderators and give info on listing this wonderful site as a resource. Thanks for helping raise awareness! Babette

Simmy, Thanks for your reply! Has it helped enough to deal with the nausea?

Well I made it through the first week of taking 7.5 mg of Mestinon. I am nauseated for about 2 hours everytime I take it, but its not horrible. I read that the nausea usually takes a week or so to calm down. I am taking it with food. I am supposed to increase my dose next week. I'm wondering if the nausea will go away and then come back as soon as I up the dose. My next 3 weeks are crazy for me and I need to feel the best I can. I might just hold off uping the dose until after my life calms down and I can deal with the nausea. ( That is if it even goes away. I tried Zoloft for 5 months and was nauseated every single time I took it. ) Any ideas? Thanks, Babette

Well I made it through the first week of taking 7.5 mg of Mestinon. I am nauseated for about 2 hours everytime I take it, but its not horrible. I read that the nausea usually takes a week or so to calm down. I am taking it with food. I am supposed to increase my dose next week. I'm wondering if the nausea will go away and then come back as soon as I up the dose. My next 3 weeks are crazy for me and I need to feel the best I can. I might just hold off uping the dose until after my life calms down and I can deal with the nausea. ( That is if it even goes away. I tried Zoloft for 5 months and was nauseated every single time I took it. ) Any ideas? Thanks, Babette

Actually I am taking 7.5 mg now at 1/8 of a 60mg tablet so when I get to the full dose for now it will be 60 mg. Brain fog is soooo fun. I don't know if my neuro will increase it again after I get to 60 mg or not. Today was day two and so far the only thing I've noticed is my mouth is dry about an hour after taking it. I can handle that. I am so glad my doctor is willing to work with me and let me start out on such a small dose. Goldenicedance - that's so exciting that you also have a standard poodle. Mine is female and she is 9 months old. She is doing great. I use a gentle leader sometimes on my bad days so its easier on me. I am working with a trainer over the internet and it is going really well. The Teamwork books are great to use for training ideas. You can get them at Amazon. I am hoping we can pass the public access test this summer. Good luck with yours. They are great as familly pets. Babette

Hi Kayjay, I'm on day two of taking 1/8 of a 60mg tablet. No difference yet but I'm taking a VERY TINY dose. One funny thing though-the first thing my husband said when he came home today was, " Wow! You actually have color in your cheeks today." I read somewhere that Mestinon gives you color. So we will see. Did you start yours yet? Babette