sstephan

Hi, I was reading about EDS and had a few questions for those of you have been diagnosed. I know that it often goes hand in hand with POTS. I bruise very easily and often have patches of bruising all over my arms and legs for no reason. I also have muscle/joint problems. My joints pop all over the place. If I try and exercise now, I end up very very sore. It is not the type of pain you get from sore muscles after working out. It is an achy feeling and happens after any kind of exertion. I also wake up with facial pain and neck pain every morning and have trouble standing from the floor due to my knees. My glands are sore off and on. However, I most certainly am not very flexible and my facial features are not really small. My eyes are very very big and open. Could this possible be EDS? Are there any tests for this? Thank you for any insight anyone can provide. I have read the previous post on EDS. Susan

I am the worst right before my period and during. I do take the pill although I can't really say if this has any affect or not.

Sending well wishes your way.

Hi, I have a one and a half year old daughter and was not diagnosed officially until after she was born, My pregnancy was both up an down. Some of this due to the fact that I was sick before I got pregnant and never had a diagnosis other than syncope problems. (which I had for years) I also had what turned out to be gallbladder problems during my pregnancy. First trimester was okay- just tired all the time. Second trimester I was in the emergency room several times for gallbladder pain, tachy, low blood pressure, faintness etc. Third trimester was up and down depending upon my blood pressure, GI problems, and fast heart rate. I think if I had a diagnosis before pregnancy things would have been better. They did not know what was wrong with me and so every time I was in the ER I would be admitted to labor and delivery even though I knew I was not in labor!! I was terrified of delivery since I didn't know what was wrong. However, my cardiologist was on call and the labor went just fine and was uneventful. I would like to get pregnant again, however, I feel it would be better this time because I know what is wrong with me. The blood pressure must really be monitored as mine got really really low and an epidural lowers your blood pressure anyway. They have to give you meds to counteract it. Also the heart rate increases when you are pregnant anyway so I would follow with a cardio. I was on a lot of meds when I was pregnant, however, I know you are not supposed to be on Midodrine. I would also reccommend seeing a high risk specialist which they will probably send you to anyway. All in all, I had a difficult pregnancy at times. Would I do it again? Yes because the outcome is worth it to me. Yes I was scared a lot of the time but my daughter is what keeps me going now and gives me such joy I wouldn't trade it for the world. My only fear about having another child is can I handle it after the child is born. I don't want my children to have a sick mommy all the time. All the best- POTS takes enough from our lives. If you want to have children, don't let it rob you of this. Just find yourself a good doctor, take care of yourself and your baby, and remember mindset is everything. Susan

There are several tests requiring a twenty four hour urine. I think it depends upon what kind of solution they put into the container. I have had two twenty four hour urines done. One test looked for some type of adrenal problem and the other was for hepatic porphyria. (this is very very rare but I have it in my family) What are they running the test on you for? I had the same concern as you do. When I had the porphyria testing done, they said it would be best if done during an "attack" as porphyria usually occurs in episodes. I ended up having it done in the hospital. I would talk to your doc and see exactly what this test is checking for because they have to prep it different ways for different things. Good luck Susan

I think your medication is the same as Toprol XL. I take 50 mg once a day. If this is the same medication, I would look into why you are taking it twice a day. I believe it is an extended release pill.

BGSU and Dona I too used to be very active and was a fitness instructor at one point. Sometimes I think I am worse when I go to the gym. One of you mentioned hypoglycemia without diabetes. Can you please explain? I am having some blood sugar problems too. Thank you Susan

Hi, I recently had a five hour glucose test in which my doctor took my blood pressure as well as a blood test every half hour. Is there any relationship between glucose levels and dysautonomia?

Hi I take 50 mg of Toprol XL. The only other beta blocker I have been on is Pindolol but that was a long time ago. It may be that the dosages of your beta blocker run differently. I know very few people who take more than 50 mg of Toprol. Susan

It is not weird to feel relieved and happy to have a diagnosis. It just validates how you have been feeling and it feels wonderful to put a name to it. Believe me I've been there! It is not that you want something to be wrong with you, but rather after everything you have been through you just want to know what it is. I hope this is the first step towards feeling better! Hang in there! Susan

Hi Jamie I am so sorry that you had a bad experience. You are lucky that you got saline! I have actually had an experience where I never even got saline. My doctor is going to write up a letter for me to present at the ER should I need to go. The letter will basically tell them what to do and how to contact her. I would suggest talking to your doctor about it. There are times that POTS symptoms will cause us to go to the ER. Especially when we can't get our pulse under control. You are not alone. Susan

Hi I am going through this as well with my one and a half year old daughter. We have seen several specialists. My father has an undiagnosed mild case of POTS I am sure of it along with his father. My daughter has periods of blue lips, quivering, somewhat rapid heart rates, etc. Luckly I have a wonderful pediatrician. The debate right now is if it is autonomic related. My daughter is not considered to have familial dysautonmia which can be quite severe and causes developmental delays. However, some doctors feel that POTS can occur in children and some doctors do not. I keep a journal with my daughter's symptoms and her activity level at the time and food consumed. She is doing very well, however, I agree Mom's know best. I surely hope that our children do not have to deal with what we have. I would suffer with this illness day after day just so that she would not have to live her life with this. Hope things are going well for you. Susan

Well I am back from seeing Dr. Gilden today and it was a very very long visit. She did a five hour glucose test today and I had my blood drawn and blood pressure taken every half hour. She feels as though there is a relationship between my blood sugar and blood pressure. It will be interesting to see the results. However, she will not get the results for a week or so. Therefore, she did not want to start me on the Midodrine today. I was so hoping to leave the office today with some sort of a treatment plan but she says we are still in the diagnostic stage. She knows that I have dysautonomia, she wants to look into it further to see if there is an underlying cause or other issue. The entire doctor situation is just so frustrating. For those of you who see a pots specialist at somewhere other than your own hospital, who do you refer to for day to day problems? Dr. Gilden is through ST Mary of Nazareth Hospital in Chicago. My docs are out of Lutheran General Hospital in Park Ridge and no one communicates with Dr. Gilden. To be quite honest, they don't understand what she is doing and I think they just write out the referrals to me just to appease me. But when I am in autonomic crisis, I am left with the emergency room at Lutheran and doctors who really don't understand what is going on. Dr. Gilden is like a consult basis and then I have my primary care doc, cardiologist, GI doctor, and neurologist. (none of whom which communicate or know much about dysautonomia) I feel lost. What do I do and who do I go to first? I have a fear of traveling now because I feel like the only doctor who gets this is Dr. Gilden and I am afraid to be too far away in case of trouble. Furthermore, Dr Gilden is only in her office two days per week and is difficult to reach. I guess I just feel frustrated and confused and not sure where to go with all of this. What type of doctor manages your cases and who do you consult with? Furthermore, those of you who see a specialist at Mayo or another clinic of the like, do you go there just for consult or treatment? How do you then confer with that doctor? I am very very frustrated and have been dealing with the doctor mess for quite some time. Not to mention that I have an HMO and Dr. Gilden is out of network. (another huge headache I am still dealing with) AND then today I had a heart rate episode during the test and my blood pressure sky rocketed! What was that? My blood pressure was running very very low- eighty over fifty Could anyone offer any advice? Thanks for listening. Susan

Hi Rebecca, Oh can I relate to your post. For a few years I thought I was just going crazy. I felt as though the doctors thought I was nuts and they just bounced me around from specialist to specialist. It is literally a full time job going to doctors. This has been a strain on my marriage as well. My husband tries to understand but deep down I know that he thinks I make more out of it than it is. He tries to say he is supportive but then doesn't clear his schedule to attend doctor appts with me and therefore does not understand what I go through. I too have learned to not talk about it and my symptoms such as heart palps, racing heart, nausea etc are so normal to me that I actually experience them and don't say anything to anyone around me. Sometimes it is just easier that way. I know what you mean about not looking sick. It is not as though you want to look "sick", however I always feel that if I go to the doctor office with make up on and looking somewhat put together, I will not be taken seriously even though I feel like h-ll. Please know that this forum helps me more than my doctors do. You are not alone- hang in there. As my mom used to tell me when I was a little girl- God never gives you more than you can handle. (us potsy people must be able to handle it all let me tell you) Susan

You have a great attitude and that makes all the difference in the world. Hang in there and keep a sense of humor. Keep us all posted.

I have been on either 25mg or 50 mg This is a low dose but if I don't take it I feel the effects by early morning. This medication has really helped me. Good luck.

Hi I have a doctor appt with Dr. Gilden on Tuesday and had a few questions. I am having a glucose tolerance test because my blood sugars have been high. Then she is going to give me Midodrine and monitor me in the office. Would that be a blood pressure monitor? What are the risks with Midodrine? Has anyone had any bad experiences with this? I am worried about adding this- have heard that it is not a good combination with beta blockers which I already take. Could anyone share any experiences with Midodrine? Is it a safe drug? I'm a little worried. Thanks, Susan

I have had several episodes of vomiting during the night. I wonder why it is during the night? I also wake up feeling very nauseated quite often when I felt fine before I went to sleep! Hope you are feeling better today. Best, Susan

How is you present quality of life? Are you able to care for your three year old? It sounds as though the fainting is quite severe but I would find another doctor for a second opinion. I noticed that you are from Ohio. What about the Cleveland Clinic? Please do not consider this without getting other opinions. Susan

All the best.

I very rarely drink anymore due to this. I also have heartrate and dizziness problems after just one drink. I like to have a glass of wine now and then but I have made the connection just recently.

I get bouts of extreme back and abdominal pain on the right side. This actually started soon after I had my gallbladder removed last summer. The pain is so intense I sometimes cannot stand it. It seems to happen after I eat certain foods such as beans, cheese, or peanut butter. It lasts about twenty minutes or less. I have had every possible GI test in the book and everything has been fine. My GI doc really has no ideas what is causing it. I take Nulev up to six times a day and put two under my tongue if the pain becomes intense. It does calm down after Nulev. It is a spasming type of pain. I have learned to deal with it somewhat, but it is very very frustrating and very scary. Interesting that you too have back pain after gallbladder removal. I have always thought there was a connection.

I am on OrthoNovum. I do okay on it. I have stopped it before to see if there was any correlation but I haven't been able to draw any.

I know it is a good feeling when you finally find a doctor who can treat you. I wish you lots of luck.

You are not crazy although I certainly understand why you feel this way. This illness can do it too you!