lorrie

I have been unable to return to work since before Thanksgiving due to a bad crash. I was struggling to stand up and my BP was all over the map. Suffering extreme fatigue and lots of other symptoms. For the past several days, my pulse has stayed between 32 and 44. I feel like a slug... Does anyone know what this could mean? I went to the ER and was told it was stomach problems...whatever!!! The doctor had no idea what POTS was and refused to call my doctor. I have an appointment on Monday with my POTS doctor, but I truly feel awful. I can't sleep because of the jerking in my chest. I have never had my pulse stay so low for so long before. Must admit it is a bit scary. Any ideas are appreciated.

Sorry I can't offer any advice about Florinef...just wanted to welcome you and hope you find something that helps. You will find lots of support here and you can know that people here understand and care about what is going on with you.

I have never taken Pepcid, but I do take Nexium and Protonix and have no side effects from them. How were you diagnosed with mastocytosis? A few years ago, a doctor thought I might have that when they were trying to decide why I constantly passed out. They did a bone marrow biopsy and it came back non conclusive. I never really got answers to that possibility and now they have turned to POTS...who knows what is what!!

I have had a nerve test on my arms and hands and was told I have severe nerve damage in both sides. I have constant pain in my right arm and drop things all the time. Sometimes I can hardly sleep for the pain. Now, I am having nerve tests done on my back and legs. My right leg gives out from under me several times a week and both legs ache at times. I don't know what to expect with this test, but dread it because the arm one was painful. The needle sticks weren't too bad, but the shocks were awful. Does anyone else have nerve damage and is it related to your POTS or other dysautonomia? My POTS doctor seems to think it is "normal" to have this problem, but really didn't explain why or if it was a separate issue or related. What do you think?

Well, I temporarily got my driving privileges back and then a few days ago, I passed out while driving. My husband and my doctor said that is it!!!!! No more driving for me. I know I have no business driving, but it sure is hard. I always came and went as I pleased and I hate the feeling of being stranded. The bad thing is that I had no warning. Usually I get a flushed feeling and have time to pull over. This time, I just faded out and ended up in the ditch. I didn't hurt me or my car...just kind of floated off the road in slow speed I think. When someone stopped to help, the car was still in drive and running. I had no idea where I was or what happened. Thankfully, the man who stopped was very nice and had the good sense to look on my cell phone and get my home number. He called my husband and stayed with me until he came. I have thanked God for keeping me safe and even though I am sad about losing the ability to drive I know it is best. Are most of you unable to drive? Just curious.

I too have bouts where I have LOTS of bad days close together and then a time that seems better. It is frustrating and hard for others to understand. That is the hard part to live with...the ups and downs. I don't have any wise advise, just hugs and good wishes for you...feel better.

Thanks to all of you for the words of encouragement. I am trying to plug along and not make waves at work, but I am not sure how much longer I can keep going. Yes, I go to a specialist...a POTS doctor with lots of experience. We have changed, added, taken away medications and finally found a combination that does as much good as possible. The most recent medication he tried me on was Lyrica and I could not take it at all. I passed out 5 times the first week I started it. I have since stopped it and feel like I have been run over by a train. It takes longer to bounce back than it used to. Seems like other than you all on this site and my family and a few friends that everyone else has written me off as a total nut case...thanks for allowing me a place to talk it out.

I sometimes get numbness around my mouth and nose. My doctor says it is related to diabetes.

It's been a little while since I've been on here because I have found myself in a deep depression. I am feeling at my rope's end and just needed to here with people who understand. As some of you may remember, I work as a teacher at an elementary school. I love my job and have truly tried to do everything I can to keep at it. However, since we returned from summer break I am having a very hard time at work. I feel so exhausted all the time and am having many passing out spells and arm pain. My headaches are getting more frequent and more severe. I feel dizzy all the time and nauseated...I just want to curl up in a ball and sleep. I know some of this is from depression, but not all of it. I am sick and tired of feeling bad and I am tired of having to struggle to remember things and keep information straight. I am forgetting things all the time and that is so unlike me. I am also dropping things and have such pain in my arms that I can hardly stand it. My hands are numb within a few minutes of trying to grade papers and I have pain up to my elbows the entire night. It is miserable. I would honestly consider quitting if I didn't need the insurance so badly. I have missed too many days already and my principal isn't understanding at all. The other day I passed out and hit head first into a block wall in the hallway and all she said was "hurry and get her moved so the children don't see it." I passed out in the shower the other morning while trying to get ready for work and came to several minutes later nearly drowning...I was basically alone because my husband was gone to work already and my daughter was asleep...when I finally got enough strength to pull myself from the tub and regained enough brain power to call in, she said "I can't believe you are calling in sick AGAIN". She has many of my co-workers doubting that I have a real problem too...very frustrating when those who you have always worked so closely with start thinking you are nuts. Okay...sorry for the depressing post. Just really needed to get it off my chest. I feel like I have some important and impossible decisions to make. If only it were easier to get disability for those of us who struggle every day just to function...

This post may have too many topics going on at once, but I am sick and confused. I need your opinions and experiences and maybe I can get a grip on things. Here goes... I have two types of episodes. One is where I get suddenly nauseated and dizzy. I have to sit very still and sometimes it passes in 15 - 20 minutes and other times, I end up passing out and becoming very disoriented and have slurred speech and can't focus or carry a conversation for upwards of an hour or so. I had one of these episodes on Wednesday evening. It had been a couple of months since my last one of these episodes. The other type of episode (which is much worse and harder on my body) is where I out of the blue start sweating profusely, I feel the blood draining from my face and feel very flushed, I become extremely hot, my chest pounds, my arms go numb, vomiting, nausea, I pass out, sometimes lose control of my bowels, HR rises to 110 - 150, BP goes crazy like 110/40 - 180/30, I get severe headaches, and have numerous other symptoms. At the end I have severe chills. Afterwards, all I can do is sleep and it normally takes me up to 24 hours to start feeling better. I had one of these on Sunday morning. I had an appointment with my POTS doctor yesterday and I told him about the two episodes within the last few days and he said that was "normal". He meant normal for a POTS patient, but it doesn't seem normal according to what you all post on here. Do any of you have more than one type of episode? Do you go months without an episode and then have several close together? I also want to know if any of you have experience with Lyrica? I have nerve damage and have just about lost the grip in my right hand. The doctor says Lyrica can help with the nerve pain. He also wants to do carpal tunnel surgery to see if that helps any. I opted to put that off until I see what the Lyrica does. I feel so confused because even with a POTS specialist telling me that my symptoms are normal, I sometimes doubt this is POTS at all. I already take tons of medication and hate to start another. The month or two feeling fairly healthy and then being hit like a freight train gets so frustrating...I just feel like giving up!! Sorry I am rambling and long winded...I think I just needed to write it all out and vent. If you managed to make it this far through my pity party, thanks for reading. Any input is appreciated.

Sorry that your parents are being like this when you need them most. I totally understand because I went through this for years. Most of my family has come around now that pretty much all of them have witnessed an episode and they watched the Mystery Diagnosis show with me about POTS. I still have a few that doubt I feel as bad as I do at times. They think I need a good therapist to talk things out. But, you know what? I have gotten past the point of needing them to understand. I know I have a real illness and I realize the most important thing is to take care of myself. Hugs to you...things will get better!!

Well, my fall with stitches and concussion has me extremely sore but I went to work yesterday. Every step I took in the school halls made my head throb and it was a very long day. I got up this morning to get ready and realized I am having bad chest pains. I tried to ignore it and then my body let me know real quick that I was going to rest today or it was going to quit on me. I started sweating and became dizzy. I sure don't want to crash again, so I went back to bed. My other symptoms are better, but I am still having sharp chest pain. I have a call into my POTS doctor but haven't heard from him yet. I hate to miss a day of work so early into the school year...this is my second sick day already. I do know that I have no control over this, but it is frustrating. By the way, thanks to everyone who sent well wishes on my head healing. It is sore, but seems to be healing well. The stitches are itchy which is a good sign. I have new little hairs growing in and they are sticking straight up. Thankfully, I am tall and it is in the very top of my head, so not too many people can see my bald spot where they shaved my head.

I'm not allowed to sleep, so here I am. I was feeling fine today and actually thought I was going to have a symptom free day...then about 3 p.m., I was cooking and bent over to put a ham in the oven. As soon as I bent over, I became flushed and dizzy and felt a sharp pain in my chest. I didn't want to pass out into a hot oven, so I turned to walk into the living room to lay on the sofa and crashed hard into the door frame. I must have hit full force with the top of my head on the wooden frame because I split the top of my head wide open and was knocked cold. My husband was at work and my daughter called my parents and they came and took me to the hospital. I have 7 stitches in the top of my head and a bad concussion. My head is pounding with pain and all I want to do is sleep. The doctor told my parents to wake me up every 2 hours and make sure I am alright. Well, my husband is following that 2 hour rule to the minute! I got tired of being woke up and just got up. I'm sick of passing out with so little warning and ending up in the ER. I think this is my 4th concussion. About the 7th time I have had to have stitches...no fun at all in top of the head. I joked that I was going to have to wear my husband's motorcycle helmet when I get up and walk around. So much for a symptom free day...I should have known better.

Sandy, I just realized you are from Florida. How did you hear about Dr. Zia? I can't believe you can't find a doctor closer to you. I was told about him by Mayo Clinic and then found his info. on this site. He is the only Dr. I have found that specializes in POTS, NCS and similar disorders. No, I did not have any blood work done during the tilt. However, he was just doing it for his own satisfaction. He had the results from a previous tilt I had done at another place and he thought from what the results showed, I had been told wrong. He said the results clearly showed a significant change in my HR and BP and I had been told everything was normal. He also found that I have degenerative disc disease from some MRI's I had done previously. There again, I had been told that everything was normal. Turns out I have severe damage in my neck and spine. He couldn't believe that a doctor looked at these films and told me everything was fine. He reordered some scans and showed them to me...even I could see damage. He is very through and doesn't hide anything from you. Let me know if you have any other questions.

Hi Sandy, Yes, I do really like Dr. Zia. I drive 2 hours to see him and find it is worth it. I had not been firmly diagnosed when I first went to him and had struggled with severe symptoms for many years. He immediately knew what was wrong and has the diagnostic testing available in his office. He has a tilt table, a tech who does nerve studies, and other testing. He will spend as much time with you as you need and he explains things well. I have never felt rushed and he is very accommodating if you need documentation for any reason. He is also very good about reminding you that it is not just "in your head". He validates your concerns and I have never felt like he was brushing me off. Dr. Zia also set me up with a wonderful cardiologist. They work well together and communicate info between them so I feel that my care is the best it can be. I was admitted to the hospital there in March and both of them visited daily and kept me well informed on what was happening and what they were looking for. Unless it is life threatening, I will never go to the local hospital again...I had the best experience I have ever had in a hospital. Everything from the ER to the testing done...they were all kind and professional. The only thing I had any problem with in regards to Dr. Zia was some scheduling mix ups. The office worker that did this a couple of times is no longer there and I haven't had that problem anymore. Once I explained to them I was driving so far and couldn't afford to get there and have a scheduling problem, they were much more careful. I would advise you to tell them your situation up front and make them aware that you want a confirmed appointment and plenty of time to discuss things with Dr. Zia. They may be able to keep an appointment open for the same day or next day for any testing he may want done. Be sure to take all your records and any documentation you have done yourself on your symptoms, episodes, etc. He likes to know that a patient has done all they can to help themselves as well. He was impressed with my internet research and my detailed log of my symptoms. I had the dates and times of my episodes and any info. I thought would be any help. He commented that those records meant more than records from a doctor who had no clue what was going on because I know my body and my records gave him more clues. I hope I have answered your questions. Feel free to email me if you would like to know anything else. Good luck!!!

Nina...you didn't sound cranky...lol I didn't mean you should go in having a fit and being confrontational. I just think you should allow them the chance to explain. You could have been taking the email the wrong way. I reread my post and I thought it came across the way I meant it. At any rate, I hope you get all this worked out.

I think I feel more troubled by my body most of the time, but at times the brain fog gets the best of me too. Mostly on the days that my body is "behaving" pretty well is when the brain fog is most frustrating. I guess because I am not so overwhelmed with the possibility of falling face first on the floor. Brain fog has hindered many areas of my life...work, family, friends, etc. I find myself in the middle of a sentence and unable to think of a word...this happens very often. I also forget to run errands that are important and have had electricity turned off because I forgot to pay the bill. I left a friend sitting at a restaurant waiting because I forgot we were meeting for lunch. Things like this make me feel so stupid...I used to be so organized and on top of everything. It is just one more part of this disorder that leaves me frustrated. I had a psychologist tell me I had adult ADHD and the early stages of dementia...these diagnosis's were made after a 20 minute discussion and NO testing! I never returned to him because he actually laughed when I began telling him my concerns about the forgetfulness. Not really a funny thing to me!!!

You stated that you couldn't say anything because the email wasn't written to you, but I disagree. It was written ABOUT you and it was sent to you. You could not help that the other doctor sent it to you in the mix with the other documents. I would say something and see what the reaction is. Possibly they can offer an explanation that will make you feel better. If not, and you still feel like they are being judgmental, you can always find another doctor. My point is that you should let the doctor know how you feel and give her the chance to explain. Hope you feel better soon. I know this is frustrating and you don't need that now.

I too have wondered how things are going. I think she was having job issues last I heard...I hope things are working themselves out...hugs!!

Thank you all...I took this weekend to rest and get my body back in a better place. I feel better today and am looking forward to a better week coming up. Just having all of you here to chat with helps alot. I hope we all have a great week!!

I am currently a patient of Dr. Zia's. Have you seen him? I guess I have been seeing him since around October, 2007. What sort of info. are you looking for?

Yes, I have a lot of stomach pain and take Protonix to help with it. It takes the edge off, but I still have bouts of extreme diarrhea and pain.

Hi everyone...I haven't been having a very good beginning to work. I just finished the third week of school and I am in a state of total exhaustion. Thankfully, I got my letter from my doctor and my accommodations have been stated and accepted. I am able to sit more and an assistant has been placed in my room for 1/2 day. She walks my students to lunch, etc. and that keeps me from walking the halls a lot. The bad thing is that I have already missed a day...my husband got out of bed Monday to find me passed out in the floor. I don't remember getting up and I have no idea how long I was in the floor before he found me. I hit my head and my shoulder and am extremely sore. I had to have my CPAP repaired and have not had it for a few nights...I am feeling so tired that I just want to close my eyes and sleep where I stand...can hardly put one foot in front of the other. With elementary students, you have to be sharp minded and I just feel like I am in a fog. My daughter has ADHD and we struggle at night with her getting homework done...it becomes stressful and I feel like my heart is going to jump out of my chest. I have had to turn all this drama over to my husband, but he is starting a new job and will be working during homework time starting Monday...I feel overwhelmed. Getting through the day is hard enough without the added stress of this. I am thinking of hiring a tutor (I have a teenage niece who would love the money) because I just don't have the stamina at the end of my work day to deal with it. I have missed hearing from all of you because I just don't feel well enough during the week to get online and post. I hope all of you are doing well and I am going to read the posts and catch up. I know I have been whining, but I just feel hopeless right now...needed to get it out.

I recently had to have another sleep study because I developed Narcolepsy. My CPAP machine is old, uncomfortable and LOUD anyway, so I was glad to have the test done. I'm very excited because I get my new machine tomorrow and I am praying it helps me with some of my extreme fatigue. We discovered that my air pressure needed to be alot higher than it has been in the past. The new mask is so much more comfortable with a new gel pad and it is soooooo quiet. It will be like trading a jalopy for a tricked out Cadillac!! My doctor is waiting about prescribing medication for the Narcolepsy until I have had the new CPAP awhile. I'm glad not to have to add more medicine right now...I already look like a walking pharmacy. Just wanted to share!!!! Can't wait to get some real rest.

My doctor advises against stopping Metoprolol quickly too. You have to wean off slowly. Best of luck to you.