KathyP

Hello Everyone, and especially to Michelle; I am a fairly new member, with only a few months under my belt at this site. If I may, I would like to put my own 2 cents on this subject. I don't have hundreds of posts logged here. I try hard not to get off topic. As far as religion goes, I don't feel that it is too personal to share with others when and where it is appropriate. (I totally agree that this is NOT the place). BUT: I hope I DO NOT offend anyone here by saying this! This is the DYSAUTONOMIA INFORMATION NETWORK. When I came to this site I was looking for answers. I was feeling horrible, my symptoms were ruining my life and my doctors didn't know much about this sydrome. I was looking for alternative things to take back to my doctor to discuss and try. I have been to other sites. I must say, if this were a Dysautonomia Support Forum it would be the best on the web. But this site, as it is stated in the membership agreement is an Information site. I am saying this because there are alot of people who have probably logged on, having the same problems as we all do, only to see threads that have nothing to do with Dysautonomia or enough information geared toward their specific situation. Please understand, no offense to anyone, I came to this site looking for information relevant to the problems I was having in conjunction with my symptoms. I have to be honest here, there were many times that I answered threads that were for support or off topic. But, when I started visiting here I read so many different medical terms I thought were all connected to Dysautonomia. One word that confused me the most was POTS (or the POTS hole). I thought that was the tachycardia I had, but later found out it wasn't. At first I thought I must have it because it was so dominant with this site that you didn't have Dysautonomia if you didn't have POTS. I was beginning to think this was the POTS information and support site. DYSAUTONOMIA has many many faces. Not personally but medically. POTS (which I now know is Postural Orthstatic Tachycardia Syndrome) is only one aspect of Dysautonomia. I have IST - which is Inappropriate Sinus Tachycardia. These 2 only scratch the surface of all of the Tachycardias and Palpitations associated with Dysautonomia. Other factors also include: VasoVagal Depressor Syndrome, NeuroCardiogenic Syncope, Irritable Bowel Syndrome, Gastroesophageal Reflux Disease, Polysystic Ovarian Sydrome, Fibromyalgia, not to mention all of the Phobias as well as panic and anxiety disorders. All of this is what a Dysfunction of the Autonomic Nervous System is about. With all of this being said, I can totally understand why there is an important need to keep this web site on track. Michelle: You have your work cut out for you and I respect you for it. This site is for the purpose of information on Dysautonomia. It has to be open to EVERYONE diagnosed with this syndrome. That has to include EVERYONE of race, color, creed, as well as male and female. I know there is alot of men out there who have it but there aren't many here that I have seen in this forum. Usually on forums the first page is read to find out what the site is about. If you can't find answers to what you are looking for then you leave and don't come back. I guess I feel I need to say this because I understand the need for the information and sharing it with others. Please, Michelle, correct me if I am wrong!! I looked into this site for information about Dysautonomia so I can discuss alternatives with my doctor. What works and what doesn't work. To see if anyone here has tried anything new that has helped them or what reactions sensitive medications have on this syndrome. There are many warm, caring and understanding people here that want to help. I would never dispute that. I don't think it was any one person who did anything wrong. The objective may have been getting too personal. I wouldn't want to say the wrong thing to a very sensitive person because they are having a bad day. That is not what this site should be about. Yes, I do think it is wonderful when someone passes a great milestone, it gives us all hope. But, I feel that should be shared when someone comes to this site with hopelessness and feels there is nothing positive to their suffering. Also, eventhough I consider myself a Christian, my beliefs do not belong here at an information site. I want to help others, if I can. I want to share my experiences with everyone and I don't care if they are atheist, Jehovah's Witness, Jew, Muslim or Christian. Dysautonomia is a very confusing, life dibilitating and not well known syndrome. We must share everything we can with others without giving unprofessional medical advise or being religiously threatening. Telling others here, "I have been where you are now, I know what you are going through", means more than "You are in my prayers". I now realize that telling people that they are in your prayers can give some people a negative feeling like saying, "Gee, what you have is so bad that I am going to pray for you!" Letting people know that you were once where they are now only says that you survived and it will be OK. If I could make a suggestion: If you find you like someones approach and would like to get to know them better then you should ask them for their e-mail address. Form a support group outside of this site where we can all visit and share life's wonderful experiences with eachother. Michelle is doing a great job of keeping up this site. Maybe someone else should me moderator of a support site. The more sites to go to the better. I am sorry I have been long winded here. And I am sorry if I offended anyone with what I have written here. I look to this site for information to help me deal with struggles I have with Dysautonomia. I am hoping that what I said doesn't result in my losing my privilage to this site. This really is a great resource. Thanks for listening. KathyP

Hi Steph; THANK YOU for sharing your experiences. I agree that "what works for one person might not work for someone else". But, just as important, experience and empathy have great healing powers as well. I have seen many of your posts here that have made me feel alot better when I had down days. You have been through so much!!! Through your experiences, here, you have given hope and ideas for others to take to their physicians to discuss and try. That is a big thing!!!, especially with a sydrome that not many doctors are familiar with. Thanks again!! Bless you! KathyP

Hi All; I went to pick up my compounding today. My total cost was: $65.00 for the one time consultation, $50.00 for the reproductive hormone cremes, and $47.00 for the Metformin and vitamin D cremes. My insurance covers what I have to get through a prescription so I will get reimbursed. It will cost me $10 to $20 per month for all of this to be refilled. I have to wait 2 weeks to call them to let them know how I am feeling and then they will add the thyroid cremes I need. This way I don't add everything at once. So it is all through the skin so I don't get the bad side effects since my system is so sensitive right now. Hopefully it will help get my system back into balance and I will start feeling my old self again. The price isn't bad at all considering that I have paid this amount for medications that I had to stop because of side effects. And they assured me that it is all natural. It is all pre-measured. I guess it is all in the way you look at it. I figure if my system is out of balance, the best thing for me to do is to try to balance as much as I can however I can do it. I will keep everyone up to date. Take care!! KathyP

Hi again All; I am planning to pick up my compounding lotion this week. I hope it isn't anything too complicated. I haven't been given a bill yet, but I am sure I will pay something when I pick it up. I will let you know what the cost is like. I haven't had to do any "spit tests". My GYN just ordered lab work and then sent the results on to the compounding pharmacist. I have seen where there are some big box pharmacies that are starting to do this also. One can be found in any phone book. I don't know if I would have done this if I didn't have a hysterectomy, but my IST, MVP/Dysautonomia symptoms have become considerably worse since then. I do know that all hormones work in conjunction with eachother so I will see if there is a difference or not. I am sure if my hormones are well balanced then it would be safe to believe that my nervous system should follow suit. What works for one may not work for someone else. But, it never hurts to try. Morgan; I only get info from my doctors. Both my GYN and my Internist know the pharmacist that does this and highly recommend him. I am a very skeptical person. I couldn't see myself going to doctors I don't know or my own docs won't recommend and that require that much money. Sounds like a big scam to me. Sounds like she is one of those old snake oil salesman from frontier times, out for just the money. I hope you and your friend are able to nail her to the wall. I can't stand people like that who try to profit off of other peoples suffering. I think it is important to keep with what your own doctor recommends. I have good doctors that I have alot of faith in. I am also the type of person who researches everything before I try something new. Sorry, I stay way from seminars. To me seminar is just another name for "look what I have to sell". Take care. I will write here again soon. KathyP

Hi Gayle; I wish I was able to hike up Pikes Peak. LOL also!! Only in my dreams. I felt bad, thinking that I may have made it sound like I did. I would be so happy if I could get to the top by car. I think the reason I get so panicy and symptomatic is because of the steep inclines and no guard rails close to the top. Good luck with your drive to California!!! Last July, while out west, my family and I went across the Continental Divide on our way to Washington State and then traveled all through the mountains to Colorado. We were at very high altitudes in Wyoming (Yellowstone). I didn't have any problems going through the mountains there. If you do get shortness of breath or symptomatic, and what helped me, roll up the windows, recline back a little, close your eyes and turn the air conditioning on. Have the air blowing on you and do deep breathing. I found closing my eyes hard to do because the sights were so beautiful. Take care, KathyP

Hello again Gayle; Well thanks anyway for the FYI. I just felt like sharing. I'm sorry if I led you to believe that I hiked up. Oh no, I couldn't do over a 20 minute walk myself right now with my dysautonomia. I was talking about taking a car up. I live in Ohio. Around here it is totally flat so when I go to the mountains any difference in altitude changes my pulse, BP and breathing. Getting to the top is my goal whether I get there by car or train. I don't think I have ever, in my life, been able to hike or climb that high. Sorry for the confusion. Colorado is my favorite state to visit. It is beautiful there. KathyP

Hi Gayle; I have had MVP/dysautonomia for almost 10 years but was formally diagnosed last December. My symptoms have been severe and I also have asthma. Two years ago I took a trip to Europe. We flew from Detroit to London then flew on to Hungary. It was a 12 hour trip total with 1 layover. I had absolutely no problems with symptoms of dysautonomia or asthma. I was so excited about going that I was totally relaxed and enjoyed the flight. I didn't have any problems with the return flight be either. I know that with long flights they encourage you to get up and walk every so often to alleviate the possibility of DVT. But, I can't see how someone can sit for that long without getting up to go to the bathroom anyway. As for the oxygen, the cabin is pressurized and air is constantly circulating. It feels like a fan is always on. The only thing that I physically noticed was my ears popping. Chewing gun and yawning helps that. I have more problems getting to the top of Pikes Peak in Colorado. That is my goal, to get up there. The air is very thin up there. I have tried twice. The last time was last July but I could only make it to 13000 feet. I started feeling panicy, dizzy and a little short of breath. I plan to keep trying until I get to the top and stand there and laugh at my dysautonomia. So, I don't know if I would be too concerned. If you plan to fly and are concerned just ask your doctor about it. Take care, KathyP

Hi Persephone; What a tragedy!! Sorry to hear that happened. You are so right! There is so much we have to be thankful for. And yes, what we have here won't kill us. My Mother had epilepsy from a head trauma due to a car accident when she was young. She then died at the age of 39 from cancer. I was only 8 years old. Sometimes I wonder if I worry to much about my own death since I am now 39. I get so panicky and get stressed out with every little twinge and pain. I know I shouldn't worry because I don't have cancer. When she died I thought that 39 was old until I turned it myself. I have so much to be thankful for that I am not ready to go anywhere yet. That in itself can add so much undue stress to an already sensitive nervous system. I may be the only woman around that has ever looked forward to 40. Life is extremely precious!!! With reading everyone's posts here I have found that we all aren't ready to go anywhere yet. We are always searching for ways to feel better and to stay alive. I feel like I complain alot about my health when there is so much worse out there. Hearing stories like this really does put things into a different perspective. Thanks for sharing!! Take care! KathyP

Hi Everyone; Thanks Jill for the feedback. My dysautonomia really got symptomatic when I went off of my estrogen last October. Now that Iam back on it I am starting to feel better, not as foggy. I also started on the Beta-blockers around the same time so I wasn't sure what was causing what. But if I stay persistant on the same thing I will eventually even off and feel better. But one thing is for sure, I have to have my HRT (hormones). I am 39, had a hysterectomy almost 3 years ago, and was diagnosed with IST and dysautonomia in December. I hit rock bottom in January and started back on estrogen in April. So I am sure it is going to take time to get everything straight. Through what I have learned so far, estrogen plays a role in serotonin and vise-versa, as well as other hormones effect other hormones. Which is why it would stand to reason that balancing hormones would help me feel better. I will let everyone know how things go with this compounding. I am hopeful!! If anyone has any other feedback with this I would really appreciate it! Thanks KathyP

Hi Everyone; I had a very interesting appointment today. I met with a pharmacist that specializes in Hormonal Compounding. I don't know if any of you have heard of this. I know it is fairly new since there is, maybe, 2 known pharmacists in my area that do this. The guys name is Matt. He sat down with my husband and I and explained the connection of all the hormones that our body produces and the effects they have on our system. A couple of months ago I went to see my gynocologist and he suggested that I do this. So he ordered a series of blood tests, cortisol, adrenalin, estrogen, testosterone, progesterone, thyroid and insulin, etc. I also had to fill out a very detailed history questionaire. The doctor looked over the results to see if there was anything that needed immediate attention. He then sent the results on to Matt. Matt then met with me to let me know what was lacking and how it was making me feel. I was shocked when he described some symptoms I didn't even mention to him that I was having. He explained, fully, why my system is so sensitive to medications. He was describing my hormone levels and how they effect eachother and the toll they take on the body. He then told me that yes, my MVP and Dysautonomia can be either heredity or caused by a virus but the main thing is to balance as much as we can so I can feel better. After our consultation he faxed all of the recomendations to the doctor for his OK. I am now waiting for Matt to make my compounding in a cream so I don't have to worry about the side effects like I do with pills. At first I was sure that this may be giving me a false sense of hope and was just some scam. After talking to Matt and remembering what my doctor told me I figured it was worth a try. I am not sure how much of this my insurance is covering. I do know that they already covered my blood work. I do know that the consultation fee is $65.00. I have already paid more than that in doctor's visits because of my attacks. I am not sure how much the meds will be but if they are needed prescriptions then I am sure they will be covered since my doctor is working with the pharmacist. I hope I am not making anyone feel like I found this mircle cure. I have yet to see if it works. After hearing everything and realizing that there may be help for me I cried all the way home. I know that there is no cure for POTS, IST, MVP or Dysautonomia. If I can balance things to make me feel better I have to go for it. I just thought I would post my info here to see if anyone here has tried or even heard of this. Heh if it can help someone else then that would be wonderful. I will keep you informed on things as they happen. Take care. KathyP

Thanks for all the great ideas, as always!! I will have to give Toprol XL a couple of months to really kick in. At least that is what my doctor says. A friend of mine has been on it for over 5 years and loves it. I have to keep positive. THAT WHICH DOES NOT KILL US MAKES US STRONGER!!!!! But does it have to hurt so much in the process???? Bless all of you!!! KathyP

WOW, there are some great songs listed here. I have always loved music of all kinds from my younger years till now. But, now the ones that grab me the most are the inspirational ones whether it is rock, classic or pop. Country doesn't grab me, it can be to depressing at times. But I do like Martina McBride's "God's Will", "In My Daughter's Eyes" I would say my all time favorites: Free Bird - Lynard Skynard Wild Nights - Van Morrison Body Surfing - Carlos Santana (from my wild years) Bob Seger - any song Hootie and the Blowfish Uncle Cracker My 12 year old daughter has me listening to alot of her music which, I must say, is pretty good. Hey Sophia; Sheep May Safely Graze, by Bach is a beautiful song. Whenever I hear it I cry. This was a great topic. It is nice to change channels every now and then!!

Hello again; I know I have had alot of questions about meds. Like I mentioned before, I am now taking a beta-blocker. I am on Toprol XL 25mg, once a day. I take it first thing in the morning which is easy to do because I wake up to a racing heart and palpitations. But, as soon as it takes hold I get extremely tired and weak for a couple of hours. I don't know if this will go away after I get used to the toprol after a couple of months. I was wondering if it would be better if take this pill before bed. I asked my doctor and he told me what ever works better for me, night or day. I didn't ask him if I should gradually take it sooner or just take it before bed when I had a dose earlier in the morning. With my system being so sensitive I am wondering if I should gradually do it or just take it and get it over with? Any suggestions? KathyP

Thanks Everyone; You all have given me some great ideas. I am feeling much better now. I am still getting used to the beta-blocker side effects so I am sure that adding the antibiotics only added fuel to the fire of symptoms. My system is so sensitive to everything. MotherEarth; that is a great idea to start out small. I was shocked when I realized that the first dose of the Zithromax was 500mg. WOW!!! I won't be doing that again. But anyway, Thanks for all the wonderful support. Take care and God Bless You All!!! KathyP

Hi Janine; As I read your post I felt as if you were pulling the words right out of my mouth. I feel the same as you. I have 2 children, a boy age 6 and girl age 12. I can't do the things I want to with them. I feel they deserve so much more from me. But I can't give and that makes me so angry I also want to scream from the roof tops. I find myself out of praying mode and instead into begging mode when it comes to talking to God. I have been in this dark hole for the past 6 months. It is hard to believe all the things I did one year ago I can't do today. I also had to quit my job. It was the best job I ever had working in a greenhouse surounded by plants and flowers. I picked my own hours and loved being there. But I couldn't do it this year. I also want to know WHY? WHY am I unable to leave the house with confidence? WHY can't I do fun things and go fun places with my kids anymore? WHY can't I be spontaneously intimate with my husband anymore? WHY can't I even go to church? WHY can't I enjoy life like I used to? WHY do I know all of the people at the pharmacy on a first name basis? WHY do I, lately, see and talk to my doctor more than his own wife does? It isn't that I don't want to be healthy. My friends and family look at me like I am either crazy or just looking for attention because just a short time ago I was not like this. Every time I feel the least twitch or pang I get panicy. I don't want to be this way anymore. I envy every person that doesn't have this debilitating syndrome. Yes, I know that it can be worse and I thank God that it isn't a syndrome that is terminal. Yes, I know that there are people out there that are worse off than I am. I pray for them. Coming to grips with this is the hardest thing we will ever have to do. There is a reason for this. I don't know why and I may never know. But I do know that I have to keep pushing forward for my family and most of all for myself. I am 39 years old. I don't care about getting older. I understand and accept that fact. But, what I don't understand and find it hard to accept is dealing and finding normalcy with this physical aspect to the second half of my life. Finding this site has helped me so much. We are not alone. We are only misfortunate with the fact that this syndrome is not well known yet and doctors only try to make us think they know what to do for us. It gets so depressing not being able to do the things we used to do. Some way, some how we need to find something normal in this pitch black hole we fell into. The one thing I have found is the people who truly love me are there. Along the way I am hoping to find more things to make normal so I can come to grips with what I have now become or even who I still am after all is said and done. Take care! Know that you and the rest here are always in my prayers!! GOD BLESS YOU!!! KathyP

Thanks Jenn, Mom4cem and Beth. Your responses helped me feel better. Beth, I plan to ask my doctor about clindamyacin on Monday. I don't remember if I ever had the Z-pack before this, but I do know that the "myacins" have always made my stomach upset before my dysautonomia got worse. I have never gotten whiped out like this before. I really do want to continue on an antibiotic just to make sure that I don't have any infections. But I don't have any "greenage" anywhere, just conjestion right now. EEHHWWW, I know that just sounded gross. My asthma has been very control for the past 2 years until this cold. My doctor truly believes that 25mg of Toprol XL won't effect my asthma at all. And just to be on the safe side he upped the dosage of my Advair from a very low dose to the next strength. Mom4cem, I hate stopping any meds without talking to the doctor but I am having such strong effects from the Zith I really am scared to keep taking it and wait until Monday to talk to him. You are right I need to get something else to replace it. If I called the office now I would get one of the other doctors in the office that don't know anything about me. Last night I had to stay in a completely dark room because my headache was so bad that any light made it worse. Jenn, I do take acidophillus after I take antibiotics. They do help my stomach tremendously. I usually have to take the penicillins for dental work and such and I do great on those. But I guess the myacins work on the mucus membranes more effectively. I have even tried Oil of Oregano before which works great on yeasts and bacterial infections. But I thought this time I need something stronger from the doc. Again, thanks for the comforting words you guys. I don't know what I would do if I didn't have the support here. My doctor as well as friends and family tell me to not worry and try to go out and enjoy life. It is very hard to do when you feel so horribly most of the time. I am sure we all, here, have heard this before. Anyway, thanks again. Take care and know that my prayers are with all of you. KathyP

Hi Everyone; Sorry I haven't been on for a while. I have been down for the count. The last topic I posted had to do with beta-blockers. Well, I haven't had the chance to really feel the benefits of them yet, but hope to soon. The first 2 weeks on Toprol XL I felt like there was actually a light at the end of the tunnel. I was starting to feel better than I had in years. Then towards the end of the first 2 weeks I got very sick with a sinus infection, sore throat and hacking cough. With each day that passed I felt the virus settle into my chest. I became so weak, fatigued and short of breath that I did nothing but stay in bed. A few days ago I went to my Doctor. He listened to my lungs and told me that I definately had an upper respiratory infection and was confident that the shortness of breath was not related to the Toprol. He gave me a script for a Z-pack, or Zithromax. That day that I seen the doctor I actually was feeling better. I took the first 2 pills as directed on the first day. The next day I was completely drained and as weak as a kitten. I feel so fatigued and disconnected and it feels like someone punched me real hard in the stomach. But what scares me the most is the extreme fatigue and weakness. Needless to say I stopped the Zithromax and will call the doctor on Monday. I am wondering if anyone out there has had this effect from antibiotics. I know that this is a very powerful one and may have completely knocked my nervous system way out of balance. I am so upset with myself for taking it in the first place because I was actually starting to feel great again for the first time in 6 months. I would hate to think that the way I feel has something to do with the Toprol. I have been on the Toprol for almost a month now and before I got the cold virus I was feeling great, for about 2 weeks. I am stuck in a spot that I pray that I can get myself out of but don't know how to do that. I appreciate any input. With summer coming I am so worried about being a recluse. I hope all is well with all of you. I know I haven't been here on a daily basis since somedays I don't get off the couch. There have been days that I stayed in the same pajamas. Thanks and Take care!! KathyP

Hi Carolyn; Welcome to the site. I am sorry to hear about what you are going through. I don't have POTS but I do have IST which is Inappropriate Sinus Tachycardia. This is where my heart races and I have palpitations when I am on my feet for long periods of time. I also have Vasovagal Depressor Syndrome. This is where my blood pressure drops after being on my feet for a long period of time. I have been experiencing severe anxiety attacks for the past 10 years but have only been diagnosed with dysautonomia within the past 6 months. My doctor tried everything for my symptoms, being careful since I have asthma and I am very sensitive to medications also. He finally put me on beta-blocker one week ago. It is helping me so far. My dr. told me that I need to give it 2 weeks to see if it will work properly. The first 2-3 days are unbearable. I know exactly what you are talking about with the fatigue, extreme tiredness and your arms and legs feeling like rubber. You feel like you can't function at all. BUT that will pass!!!!! You have to give it a chance to work for you. Give yourself a 3 day weekend to get through the worst of it. I was very hesitant on trying it. But now that the worst is over I am concentrating on letting the medication do its job. I am terrified that I will have an asthma attack, but I haven't so far. Let your doctor help you and at least try with the beta-blocker. After your body gets used to it you may be very glad you did. I will mention to you that the one thing my doctor did was give me Ativan to take for the first 2 weeks on the medicine. It helps ease the side effects tremendously. I have noticed that my heart has slowed down considerably. If your doctor thought that the beta-blockers would be bad for you he wouldn't have had you try them. What dose did you start on. I am on 25 mg and it seems to be enough for me right now. I hope it works for you!! Keep in touch! Take care!! KathyP

Hi Sunisshining; I have been reading all of the posts here. WOW!! Urine injection? You are certainly getting alot of information here. I made a mistake when I first started reading this site for dysautonomia. I'm sorry I wasn't diagnosed with POTS. I talked with my doctor and he told me that I have IST- inappropriate sinus tachycardia. Which is tachycardia while standing for a period of time. I also have vasovagal depressor syndrome. It seems that POTS is the dominating syndrome at this site. I'm sorry if I thought that this was a web forum for all dysautonomias. So listening to everyones input makes it's easy to compare symptoms which seem the same. It is extremely important to get an exact diagnosis for yourself as soon as possible. Eventhough Dysautonomia is a very complex syndrome it does not mean that everyone that has it has it the same way. There can be so many underlying symptoms of Dysautonomia, such as intestinal colic, acid reflux (can cause nausea), fibromyalgia, chronic fatigue and so on. Have you been diagnosed with POTS or any other Dysautonomia?? The tilt table test is not only done for POTS. There are several other autonomic dysfunctions it tests for. The first thing you need to do is find a doctor. If a doctor has already diagnosed you, properly, for dysautonomia and refuses to treat you then you need to find another one. Whether it be an Internist, Cardiologist, Endocrinologist or General Practicianer, you need to see a licenced doctor. And the doctor needs to be familiar with Dysautonomia. You stated that you go to a clinic on campus? If so, is there a doctor there or just nurses and nurse practioners? I'm sorry if I am so gruff here. Your health is at stake. You stating that you are feeling much better because of the IV's only says that you are dehydrated. But, if you can't keep anything down, then there is a definate other issue here. I know everyone here gives great advice and wants to help. This is a great place for support. But, you should get a physician to care for you. If you are only eating crackers and soda that's not good. I hope you don't mind my being blunt here. I wish you well and hope you find the proper care that you need. God bless you!!! KathyP

Hi Sun; I am sorry to hear about the problems you are having on top of feeling horrible. I think your cardiologist said the things he did because he can't admit that he doesn't know what else to do. Don't feel bad about him making you feel like you are over stepping. Your Mom is right!! He is a doctor. That's what he is there for. It is his/her job to figure out what overwhelms you. If he can't do more for you he should have, at least, recommended another physician to take over. As I understand, you live in California? Have you contacted the State of California Medical Association? Or, you can contact the State Medical Association in the state that you are currently living in. That would be the least expensive way to look for a doctor that is familiar with POTS/Dysautonomia without going from doctor to doctor. I don't mean to talk down Dr. Grubbs, whom everyone here seems to like really well. I live in Ohio and I don't know anything about Dr. Grubbs. But, I am sure there are other doctors out there, in every state, that are familiar with POTS/Dysautonomia. The one thing I can't stand about doctors, these days, is that they can become very arrogant and just see you as a number instead of a really human being with a real illness. If they can't treat you in the office then they don't have time for you. Well I think that doctors are a dime a dozen. You just have to find one that listens. It may take you a very long time or it may not. Be PERSISTANT! Keep asking lots of questions!!! That's your right!! Don't let this doctor's actions make you feel hopeless!! You will eventually find a good doctor who will comfort your needs. You will find that you know more about this syndrome then most doctors do. You need to find one that is humble enough to want to learn from you, which is rare. But keep up the hope that there is a suitable doctor out there for you. As for you nausea, my guess is that it is a symptom of you dysautonomia. With the medication that you are on, on top of the stress with this issue, going to school, and having POTS it's no wonder that you are nauseaous. And the muscle pain might be from inactivity. Do you get the chance to excercise or at least take a walk? I know it is very difficult when you are extremely tired but it is very important to keep moving. Keep up with drinking alot of water. Take supplements such as Calcium, Magnesium among others. I hope this helps you somehow. I have been through the same thing. I was seeing a doctor for 8 years that would just tell me "it's nothing" and send me on my way. Then when I read what he wrote in my chart convinced me that he was just another arrogant, uniformed physician. He wrote when I was there, he just listened to me rant on about my "ghost" symptoms then said things to make me feel better and then sent me home. (Always, Always, Always, get copies of you medical charts from every doctor you see!! It is your medical right to have them!!) I hope I don't sound too negative about doctors but I have alot of experience. I am sure you will have success in finding one. I hope you feel better soon. You will have good days too!! I will say a prayer for you. Take care! KathyP

Thanks Calypso and Merrill; I did break my 25 mg pill in half and I am starting with 12.5 mg for the first couple of weeks to see how it goes. I started it yesterday, Friday. Today I feel a big difference with my heart rate. It has been ranging between 80 - 100. It hasn't been that low in a very long time. Today my heart was a little quieter. I don't know if it is supposed to work this fast? I am feeling better, but I am very tired right now. I hope it is just a temorary symptom until my body adjusts to it. I am extremely sensitive to any new medications. I haven't had any problems with my breathing, THANK GOD!!! I was so worried about it. It seems to make me tire out faster when I am on my feet. I have also started back on my estrogen. My gyno increased it according to my blood tests a few weeks ago. So, needless to say, my system is all out of balance for the time being. I will just keep at it and see where it takes me from here. I am praying that this beta-blocker and the estrogen are the rope that will help me pull myself out of my POTS hole. Thanks for your support. I hope and pray for you as well. Hopefully sometime I can be able to help pull you up also. Take care! KathyP

Hi SunisShining; Welcome to the club!!! I know how frustrating it is to have a doctor tell you one thing and another tell you something completely different when you are telling each of them the same thing. I feel for you!!! You are so young! I started having my dysautonomia problems when I was 28. I am now in my late 30's. It took over 10 years to figure out what I was dealing with and what name it has. I was just relieved to know I had a real problem and it wasn't all in my head. I don't have a problem with muscle pain but I do get tingling in my hand, fingers and feet. I would guess the it's just a symptom with the rest. Think positive!! Know that you are not alone. You will find the answers you need. Take care! KathyP

Hi Jesse; Welcome to the forum! I've had anxiety attacks for the past 10 years which alerted me to something being wrong. I finally started getting the answers I needed only 2 1/2 years ago. I can also understand the fatigue. I've had that, non-stop, for the past few months. Stephanie pretty much hit it all on the head!! Water, water, salt and try to exercise. We all know how hard it is to exercise when you don't have the energy to get out of bed. I was diagnosed with Mitral Valve Prolapse/Dysautonomia. I also have POTS. It can get very frustrating to figure all this out, but you sound like you, at least, have a hold on things. Plus, being here should give you comfort in knowing that you are definately not alone. I'll be looking for you again soon. Take care!!!! KathyP

Hi Everyone; I went to see my doctor today. He told me that everything seems to be going good, but he thinks it's time for the Beta-blocker - Toprol XL. He told me that my asthma is very well controled and doesn't think that the Toprol with affect it since he has me on a very small dose, 25mg once a day. I still have a high pulse rate, 100 resting, and get alot of ventricular contractions (palpitations). With all of this I am still agoraphobic and can't seem to control the racing heart when I have any kind of stress. I know I should trust my doctor, but, this scares me to death. He was the one that diagnosed me with Dysautonomia and has comforted me in regards to it so far. I am terrified of having a severe asthma attack. I know everyone is different when it comes to medications. I have been going without any meds for my POTS and Dysautonomia since my anxiety attacks started. I have tried different things that I couldn't tolerate and had to stop after a couple of months. The only thing I have been on is Xanax but that doesn't seem to be helping as much anymore. Any input? Thanks! KathyP

Hi Ernie; It sounds like you are in between a rock and a hard place!! I can definately see your point of not wanting to see Dr. Grubb in May and then getting tests done in July by your Endo. And, $2000 out of pocket, SHEEEESH!!!!!!!!! I would call Dr. Grubb's office and see if you can make an appointment for after July. Explain your situation to them and see if it would be better to have the new test results for Dr. Grubb to see. He might what to see the results. And, if you don't have many changes right now that you have to see him for in May then after July would be better. This way you have an appointment set up with him even if he decides not to work. If he can't see you then he should be able to recommend someone just as competant. I am sure they would understand the situation. That's alot of money to spend on an incomplete consultation. Good luck and keep us posted! Take care! KathyP