ukwildcat

Almost every morning, I wake up and miss the old days. The days I woke up and felt rested and good and ready to start the day. I am so tired of waking up and feeling bad and feeling like I have to push myself to get up and get started. Even if I should be excited about what the day holds, I feel so crappy I don't even want to really do anything. Im tired when I wake up and usually tired and pushing myself all day. I'm so tired of feeling bad. I really just want to be normal again but what is left is just a vague memory of what normal really is. I have to remind myself to be thankful for the many blessings I have. Focus on positive instead of negative. Sometimes my mind remembers and still has the glimmer and want to do things but this stupid body just will not do all it is told to do. I guess it is stubborn like me. We just to do the best with the hand we are given. Some days it is just a struggle and remembering what life was like before just makes it harder.

With my pots I have chest pains a lot, tight chest, stabbing pain under my breast, and some trouble breathing during these pains sometimes. Right after my first pacemaker surgery I had these pains and they kept getting worse and worse and it became harder and harder breathe. I tried to wait it out to see if it would go away but became so difficult to breathe and awful pain that I finally called my cardiologist emergency line and they said to go to ER right away. It turned out that my chest wall had become inflamed.

I have been trying Cymbalta with awful results. Not able to turn tv on due to light or sound and unable to concentrate on computer till now. Finally able to look at computer and make sense of things and this is first thing I clicked on. It made my day. Prior to pots I was an elementary school teacher and I love this. This should be made into a children's book to explain pots to young children. Thanks for bringing joy into my life today.

I saw Dr. Neilson at children's hospital in OH yesterday. I was dx with EDS with a beighton score of 7 out of 9. He is sending me to PT, pain management, and RA doctor. However, we didn't think about it till we got into car that he didn't mention a follow up appointment with him(Neilson). I have a call into the genetic counselor with questions I had after the appt. I always have more questions after I have a while to think about and process the information. Funny I get on forum and read the post and Kris444 had same question about follow up with Dr. Tinkle. Appointment was interesting finding out how EDS is related to pots, GI problems and my space orientation(why I am always tripping on air, running into walls and hitting my head on things). Neilson said I was unusual in that my hands are not as affected as my feet and my large joints(shoulders, hips, neck, back and knees). He said most people have affects of EDS in hands first. I am excited to finally have a dx and start the process of feeling better hopefully. I cant wait to start Pt. I have high hopes this will greatly improve how I feel. Question-does anyone know why I'm being sent to RA doctor? I know it is hypermobility and RA doctors work with that but if dx with EDS already why are many people sent to RA doctors too.

Pink 1975 I am so sorry to hear that your husband is treating you that way. This illness is so awful and someone talking to you that way is unacceptable. I cant image a love one telling me to knock it off and get up off the floor after I fainted. You should be proud of all you accomplish in a day. Right now, I could never have completed all those tasks. Many people with out an illness are not motivated enough to do all those activities. I have lost many friends due to this illness. Many people just do not understand and never will. After awhile, I have decided that I don't want to be around the negativity. It would be so hard to be in a relationship with someone like that, someone you have to be around every day. It just breaks my heart that you are treated that way. I don't know how to correct your problem. However, would he be receptive to the suggestion of couple counseling or therapy. Also, does he ever go to doctor appointments with you? In my experience (15+ years of Pots) the more knowledge people have about this illness or any illness, the more understanding they are. I hope your husband begins to understand or at least learns to appreciate what you do for your family. I hope you have a family member or friend in your life that is supportive of you. My prayers and best wishes go out to you.

At a doctors appointment recently the topic of menopause came up, again. I have asked this question before to other doctors over the years. I said that since I have many of the symptoms of menopause maybe it wouldn't be as bad for me as it is for women that are having these symptoms for the first time. The doctor said that POTS symptoms many times get worse during and after menopause. I have a really hard time with pots symptoms before, during and right after my period. So I was very sad to hear this news, even though doctors have told me this before. I have always hoped that after menopause, I would have some hope of feeling better.

Hholmes13 your cake is amazing. I am very impressed. It is way better than the cakes that I see in the bakeries around my house. I like to quilt, when I am able. When you think of quilting, you think of little old ladies doing it. However, it is hard work. Many days it kicks my butt. I always joke that those must be some strong old ladies. It may take me a lot longer than most people to complete a quilt but I love the feeling of completing a project, other than house work. Even when I can't physically quilt, I can look at books or computer to come up with my next project. I make quilts for family and friends and quilts for people I hear of that are sick. For example a CF patient that had a lung transplant and for breast cancer patient. Also, there is a group of ladies in my area that get dolls and then they make doll clothes and a quilt for each doll. Then, they give them to less fortunate children at Christmas. I have made doll quilts for them. Recently, I learned of a rehab facility in my community that gives quilts to the ladies when they graduate the program. Now, I am working on a quilt to donate to them. Even though not able to quilt many days, it gives me something in my house to do when I feel good enough and something to think about and plan even when I feel bad.

Casper, Just wanting to warn you about getting to close to neighbors. My neighbor also has a chronic illness. We became friends and were friends for 7 years. However, mostly due to our spouses we got into an argument, now we don't speak to each other. Even though my feelings were very hurt, I try to be nice but she doesn't in return. Let me tell you by experience, it is vey rough when you have a disagreement with a neighbor because you see them every day. I am a person that hates conflict and now I seem to have it every time I let my dog out.

I agree. They send you to one specialist after another. Some doctors just want to get rid of us and some doctors would like to help and don't know how. I don't know if it is a problem with everyone but doctors want to keep doing the same test over and over. It just cost my insurance and myself more and more money. They keep on saying they don't know the standards the test were done. I understand that test can be done under different standards, an MRI can be done in different % of slices( I know not medical terms) but why if two RA test come back positive then why do we need a third, lets move on and either test more in depth or for something else. I decided Pots patients just don't fit the standard many times so hard to dx, I guess. Doctors act applaud when I ask questions. When one said who cares if we test again your insurance will probably pay for it, I think that may be one thing that is wrong with our health care today.

I know I shouldn't be complaining when I have a good day. However, good days bring with them their own issues. During bad days I'm just concerned with getting through the day with necessary activities, take the dog out, make food to eat, drink water or G2, get to restroom, etc. When I have a good day it has it's own issues. My house should be cleaner, I miss working, I should be doing more for other people. Also, the list piles up after a bad spell of everything I need to do. I have trouble with even good days health wise not turning into bad days mental wise. Anyone else feel this way??

I have no answers for you but you are not alone with this problem. I also have trouble sleeping at night and I exercise everyday. I am awake till 3 or 4 in the morning. Then after I fall asleep, I wake many times and don't have continuous sleep. I have been having horrible dreams and even when I wake up it feels like my adrenaline is pumping even for hours after I wake. I also get night sweats and chest hurts, it feels like someone is squeezing my heart. I cant sleep late either. I go to sleep at 4 and I am lucky usually if I sleep till 8:30 waking up many times. I try not to take naps because I want to sleep good at night but this doesn't work. Therefore, I just go without good sleep, even though I am so tired. It seems like this problem comes and goes but lasts for months once it starts. This time it has lasted for 6 months so far. Sorry I don't have answers for you but sometimes helps that you are not alone with this problem. I hope you start sleeping better and feeling better. Hopefully, someone out there has answers for you.

I'm so happy that you had a good appointment. It is amazing when a doctor actually looks at the medical records that you send them. Also, that he wants to work with your other doctors is amazing, that is a rare thing. I hope they come up with a dx and a treatment program that will help you. I live by Cincinnati and I have an appointment with Dr.Neilson in April (what they told me was that Neilson worked on Dr. Tinkle's team when he was located in Cincinnati at Children's Hospital.) I have been waiting for this appointment for many months. After hearing about your apt. I am now second guessing myself if I made the right decision with this doctor because Tinkle sounds awesome. I was just trying to stay close to home because my family already drives me hours to see Dr. Grubb. However, a great doctor is definitely worth the drive. Many doctors are a waste of time and create even more stress. When a doctor says what is Pots, or EDs you know the appointment is probably not going to go very well. However, a good doctor is first step(sounds like you found that first step) and you have been in my thoughts and prayers that you find the answers and help you need. Please keep us informed about your progress.

Some of you were talking about drinking something warm. Many times when I drink something hot like tea, hot chocolate, or even soup it many times triggers my pots symptoms. At first I thought it was caffeine but even happens with soup. Anyone else ever have this problem.

I'm so excited for you. I hope you are able to get the answers and help you need. Keep us posted on what happens. Warm wishes and prayers.

I drink G2 and propels but like Snow Drifter, I have found that eating beef jerky and drinking regular water(or G2) helps too. If we are planning a trip, I always make sure to pack beef jerky. It has become a sort of joke with people we travel with, that if anyone gets hungry I am the person to go to because I have jerky hidden everywhere. It seems to help me even when G2 doesn't help. I was thinking it may be combination of salt, water, and protein. Beef jerky has helped me many times. We even make our own deer jerky because it is leaner. I am going to start trying home made sport drinks too.

Phlegming just think about when you were first having these symptoms, Im sure you didn't understand them, what was wrong with you, or how to deal with these symptoms. Knowledge was power for you. You had to learn what Pots was, how it affected you, and how to treat or deal with symptoms(the best you can). This illness doesn't just change our lives, it changes the lives of our family and friends too. The more knowledge they have of this illness, the more they can understand what you are going through and why you can't just do things like "will it away". However, even with all my info I still get frustrated with this illness. Therefore, I know it has to frustrate my family even when they are supportive. Due to fact, that someone cant truly understand unless they lived it or had some sort of chronic illness. We as patients have to be understanding of our caregivers, they are traveling this rough road with us and many times it is difficult for them too in different ways. Many times, I wonder if I wasn't living with this illness if I would be as understanding as my family and friends have been? We expect family and friends to be understanding of this illness that we have and don't even really understand. Even most doctors don't understand it.

I have lost many friends due to this illness. On the other hand, many people don't even know I'm sick because they only see me on my best days. You have to pick and choose who to explain illness to. However, many great friends have stuck around and spent the time to understand my illness and go out of their way to include me and check on me. Knowledge is power. The more my family and good friends understood about this illness, the more supportive they have become. Remember this illness is difficult for us but in some ways I think it is more difficult for our loved ones. Husband started going to all doctors appointments with me. This helped him to understand illness and know what it is like with doctors. My mom always wanted me to just will it away. She would say if you just push yourself, you will feel better. I also took her to some doctor appt with me. She got to ask her own questions and then she was also more understanding. She even started researching NCS and Pots on her own. I have a great support group. It is amazing how great and understanding most people are, if you give them a chance. However, these people still get frustrated with me and this illness. Then, I have to understanding of their feelings too.

Cardiologist put me on Ritalin saying that it would help my fatigue(tired) and brain fog. Cardiologist even sent me home with studies for myself and my GP on how Ritalin had helped their patients with pots that had these symptoms. Katybug, I hope you feel better, my prayers go out to you. It is devastating to struggle with this illness everyday and amazing how a long, bad flare up can crumble and change a life so quickly.

I wonder what an EEG would look like during her tremor episodes. I had an abnormal EEG and doctors said I definitely had epilepsy along with NCS. Doctor said that I had temporal lobe epilepsy and that was in my medical records. They sent me home with books on patients guide to epilepsy and sent books to my family. Doctor gave me all sorts of research. I spent 7 days in epilepsy unit and four days at home with wires attached all over my head. Then, doctors decided they were just unable to dx. Not a yes or a no just unable to dx. Later doctor said she didn't know for sure what was going on but in medical records it stated no epilepsy. I was happy for that dx but always scared of that too because went from so positive of dx to it just went away. That doctor shortly after said she couldn't help me any more I needed to find a new neurologist. I know that pots and ncs are many times misdiagnosed as epilepsy but always wondered if some connection.

This video is so sad and makes me afraid. My heart goes out to her, those episodes must be so scary for her. I feel so sorry for her. I have had tremors but not that bad or last that long. However, it seems like I have been having them more often. Other night, I woke up thinking dog was running in his sleep and shaking the bed. It took me a few seconds to realize it was my body shaking. A few nights later my husband woke me up saying please stop shaking the bed. Again took me a few to realize I was having tremor. I have tremors while awake too and also feel better if I curl up in ball. I do have pupil abnormalities but not as extreme as what I read about others on forum. It seems like lately I have been having more and more issues and afraid of what is to come.

I don't have an answer for you but it is like you wrote a paragraph similar to my symptoms. I have been having anxiety problems myself and they seem uncontrollable once they start. I told my doctor about these problems with anxiety, weakness, fatigue, brain fog and pain. It started a new batch of meds, doctors, and tests. My family keeps saying I am worrying about all these new things so much and creating or making these problems worse. I agree all these new things add to my already existing symptoms(too much to deal with while feeling bad) but I was having these problems before. That is what created all these new things. Many of my symptoms seem all over the board and keep changing and getting worse and worse. Even makes it worse that I keep crying all the time, it is like an involuntary thing even when I'm not sad. I'm not a crier. I know my family thinks I'm losing it, even though they try to be supportive. If I was just listening to myself and not going through it, I would agree with them. However, I think the stress of this illness does have many mental components. Many of us have had so many bad experiences with meds that when we start feeling worse, we don't want to go through all that again. Many of us have been through many bad times and lived through them. We just have to hang on and look toward the light on the other side. You have to be a strong person to make it through this illness. Hope you find an answer and start feeling better. If you find answer post it, people with similar problems will know how you treated it, but know you are not alone in this fight.

Im so tired. I have always been tired but for months now it has gotten worse and worse. I feel like arms to heavy to lift and legs are going to buckle under me and it is like this almost everyday for the whole day. I have to rest for hours after I do any activity and if I do more than one activity, it takes days to get back any energy. I walk dog every day but everything is getting harder and harder to do. All pots symptoms are getting worse. I don't even know if it is best to take nap or try to stay up so it wont interfere with night sleep. Doctor put me on Ritalin 20mg and said if this doesn't work we will work up to 30mg next time. 3 months and not sure what is Ritalin and what is pots and what to do with that med. Sometimes so tired but cant sleep. so tired, have joint pain and brain fogged along with all other pots symptoms, I don't even know what is right decision. Right now so many decisions with RA doctor, my family doctor, changes and additions of new meds and doctors. Im so overwhelmed and tired I don't know what is the right thing to do and as I feel worse, these decisions even feel harder. It all brings back memories of all I went through with doctors trying to find out what was wrong before dx with pots. Family says I am making myself like this worrying but I think as my symptoms get worse I cant make a good decision and it is bad cycle. I think if I felt good, I could think good and this wouldnt be happening. I know this is just a cycle of our illness, I just needed to complain to someone who understands.

I had a yellow lab (Hunter)for 14 yrs. He wasn't a trained service dog but he could sense when I was going to pass out or when I would start feeling bad(any other time he was just a fun loving dog all about playing ball). He actually knew something wasn't right before I did. He would walk beside me when I was dizzy and he would try to keep me from standing up by pushing against me or crying. He would bark and whine to keep me from going down stairs when he sensed things. Many times, when I didn't listen to him, I ended up passed out at the bottom of the stairs. I learned to pay attention to his warnings and be careful when he acted differently. Many times, I woke up from a pass out or bad gray out with him licking my face. He even jumped in the tub and woke me up one time when I passed out in tub. Im home alone a lot when my husband works. He was an amazing dog and great companion. My husband and family members were amazed with how my lab knew about my illness and gave me warnings. It was like he took care of me and we were very close. I lost him about two years ago. It took me awhile to get over the loss(which I guess I'm still working on). I got a 1 year old lab/golden mix (Barley)at the pound about a year ago. He doesn't have ability to sense my illness but is a joy to have around the house and having him makes me walk. Like Kit said, remember dogs(even service dogs) have needs too and you have to think, if you have the ability to care for a dog properly with this illness before getting one. Some days caring for a dog while I am feeling bad is very hard work. I love both my dogs in different ways because of their different personalities. However, I think Hunter was one of a kind and sent by god to help me through the beginning of this illness,when I didn't know how to see the warning signs myself. I thought about a service dog when I lost Hunter but I was afraid that a service dog would be all work and wondered how much of a fun loving dog it would be, because Hunter was both. Hunter was an amazing help to me and I do miss having those warnings. Maybe my sweet Barley will develop this ability as we get to know each other better. However, I think Barley was mistreated before we got him and with this illness it gives me joy to think I am helping this dog to have a better life and feel love, because this illness keeps me from doing all I want to do for others. Now, I would never trade Barley in for the world but a service dog is a wonderful option. I miss those warnings.

I was wondering if there are any Kentucky residents out there that have run into the KY house bill 1 (nicknamed the pill bill). I know this KY bill includes many medications that are used in treatment of pots, ncs, hypermobility, anxiety etc. If you have, what are your opinions on this bill and do you think it has affected your health care from doctors, or costs(insurance bills/if no insurance out of your pocket expenses) in any way? I'm concerned that this bill will keep many doctors from continuing to prescribe the medicines that patients need. Also, this bill seems to go against hippa and doctor/patient confidentiality(due to kasper reporting). Also, concerned I will see a rise in my health insurance.

Does your rheumatologist treat your fibromyalgia. She said I had hypermobility and possible EDS(even though she didn't know what EDS stood for a beginning of appointment) and some signs of fibromyalgia too, but didn't act like she treated either one of those. My first positive RA test was in 2005(low positive). I was fainting so often then that I was more concerned with heart than joints. Joint pain has gotten worse and I was tested again recently as a high positive. Why is nothing ever an easy diagnosis. She is sending me for my third RA test. She said she cant diagnosis with their standards and is sending me to the same lab I went to a month ago. Don't know if I go to lab or go to new doctor or just try to live with the pain even though it is affected even my limited already pots life.