thejohnsongang

I try to stay indoors during the day as much as possible. When I do have to go out I have to wear sunglasses or I get horrible headaches. Also the heat/sunlight makes my symptoms much worse and I feel horrible after about an hour outside.

My daughter uses the Stimate...Not sure which it is...brand or generic. She just started taking it last month for her Von Willebrand. We have to have it drop shipped to our house because none of our local pharmacies can order it. Hers is a nose spray. We are new to the whole DDAVP medication. If you would like more info on it let me know and I'd be happy to share whatever I can about her script.

Welcome...hope you can find some of your answers with us.

I am in the same boat with you. I have not been able to work since Sept of 2006. I applied and was denied the first time, appealed and was denied again. I then got a lawyer filed an appeal again and I am now waiting for my case to be heard by a judge. My lawyer is wonderful and explained to me that it's not about what illness you have, but how it effects your ability to do things and your quality of life. He says it's all about wording. My estimated wait for a hearing is 500 and some days. So the wait is long, but my lawyer is predicting a good outcome for me. Yes he gets his share, but he is the one doing the work and dealing with the paperwork. I will just have to show up at court. I do try to get all my records when I go to the doctors and I keep my own file at home, that way I make sure it's all in my SSI file. But he handles the paperwork, the phone calls, etc. It was a great relief for me to have him take the case over. I suggest you keep trying. Don't give up on what is yours to begin with. We've paid all these years and now our doctors opinion isn't good enough to make a decision on our ability to work. We have to fight for our payments and go by their doctors opinions. A lawyer is very important in winning most cases for SSI. I'll keep you in my thoughts. Good luck.

The cooling vest is a good idea, but if you want a less expensive idea, get a cool wrap. They sell them at Wal-mart and some sports stores. They are about 2 feet long and about 1-2 inches wide and have gel beads inside. You soak them in cold water and the beads absorb the cold water. They you just wrap around your neck or drape them. They stay cold for hours and won't leave your cloths all wet. My daughter uses them when she plays sports. She also has POTS/NMH. They work well for her. They run about 2-3 dollars at Wal mart, a little more at sports stores.

Glad to hear that things are looking better for you. Here's wishing you the best.

I can't stand the chemicals when our house is cleaned. Usually hubby and kids do 99% of it. I do try once in a while. I try to do things that don't involve stretching or reaching. Like the bathroom sinks and the kitchen sink. For my bathroom I switched cleaners years ago because because the chemical smells would make me so sick, almost to the point of going to the ER with breathing problems. We now use a Magic Eraser. It get the soap scum up very easily and doesn't have any smell at all. The kids and hubby like using it also. They said it is easier to clean with. Works great on the fridge, dishwasher, stove and microwave also. It cleans all the little creases without a lot of effort. I'll have to check into the shark. I can dust mop our hardwood floors, but it takes me most of the day. We also have 2 dogs and a cat and I can understand the pet hair issue. That's why we got rid of most of the carpet in our house. If anyone has any advice on the pet hair..I would love to hear it. We have even talked about shaving our dogs in the spring to cut down on the hair, but I haven't got the nerve to do it to the poor things yet. They are beagle/terrier mix and would look silly shaved, but when they blow their coats...it's truly a mess.

Glad to hear things went well for you. Hope your testing is soon and has the answers you need.

Forgot to add...my daughter takes Migrelief....recommended by her POTS/CFS doctor for her chronic headaches and occasional migraines. It can be purchased online. Our pharmacist ordered it for us. It is the riboflavin 200mg, magnesium 180mg and Puracol 50mg all in one pill. She takes 1 pill twice a day. So far so good as she's only been on it for a week. Here is a link for it http://www.migrelief.com/index.htm Her pots doctor says it's definitely worth a try as other prescription medications have not helped yet.

I'm sorry that Chrissy is suffering from these. Migraines are horrible to deal with. You might want to check out info on TIA's as well. My mother has these due to a blood clotting disorder. Here is a site that I just happened to find. http://www.americanheart.org/presenter.jhtml?identifier=4781 I hope she finds relief from her migraines, they can debilitating.

Love the whole Legally Blonde thing here. That was a great movie. But glad the lawyer did post for your behalf. Any kind of legal advice that is free from a member of the POTS club, should be considered. I love my lawyer and his advice, but it's costing a small fortune. Why battle over a job when there are other employers out there that my be more considerate of your health and feelings. And why waste the energy and money on it. I feel very sorry for you in the fact that you lost your job and that it was I'm sure very hurtful to you. But don't let it get you down. I found an employer that I could be totally honest with and they worked with me for almost a year before I had to quit because of my health. They even told me that if I got better to come back and I could have my old job back. I would love that, but don't see it happening anytime in the near future. There are employers out there that do care, it just finding them. You don't have to tell them your whole health history, just let them know that you have an illness that will require time off for doctors appointment once in a while or an occasional sick day. Not sure what area your in, but here in MD our county has a program that assists displaced workers due to health or family change. It is called the Job Training Agency. It is a state/gov funded program that will retrain you, for free, for another job. When I was in my early 20's due to a divorce and having a child and only a GED my field was limited. I qualified under displaced housewife and received my vocational training for free.. It was a great program and I enjoyed it. There were people from all walks of life there. You might want to check to see if our area has anything like it. I wish you the best in your search for new employment and heres hoping you can find what your looking for or at least a good desk job in the AC.

Wishing you luck on your search. I'm starting to dislike most doctors myself. They just blow you off like your pain/symptoms don't mean anything. If it wasn't for my PCP and my cardio I think I would have gone postal on some of them by now. No pun intended for those that might be a postal worker. I hope you find the doctor you need.

Still keeping you in my thoughts. BIG HUGS Nolie

I think the vacuum or house cleaning is hard for us because of the exertion. Anytime I exert my self in anyway I end up either feeling like crap or on the floor. I haven't been able to clean house in years. My husband and kids help. We moved in Feb to a single level house and my mother and uncle are down stairs in an apt. We have hardwood floors which helps a lot. We have 2 dogs and a cat so the pet hair can get out of control very quickly. I can dust mop the floor, but the bedrooms are carpet and the kids vacuum it for me. My husband cleans the bathrooms when he can't get the kids to do it and mops the floors for me. He also does the laundry. I can't handle it at all. We have been teaching our kids to take care of themselves. They are responsible for their own rooms and cloths. They must dust, vacuum and windex their own rooms as well as do their own laundry. They take turns vacuuming our bedroom and helping with the bathrooms. After diner, one has to put the food away and empty the dishwasher and the other loads it. The next night they switch. They are also learning to cook to help out as much as possible. It's a little hard for my daughter sometimes as she also has POTS and has bad days once in a while. But we all learn to manage. Since my husband does all the yard work,I hate asking him to clean anything. The laundry is enough. I can dust mop and once in awhile dust the living room furniture. But any cleaners, chemicals or exertion and I'm done for. I've learned to let it go a little and my house is clean, but lived in. Once I had a cousin that came to visit and he complained that their was dust on the furniture and even ran his finger through it to prove it to me. So I handed him the rag and furniture polish and made him dust it all. He has never since said a word to me about the dust or anything else when he comes to visit.

I can say that I truly understand how you feel. I have POTS/NMH and was dx in September of 2006, my mother was dx in 11/2006 and my daughter in 3/2007. I never new any thing like this ever existed. My mother has been ill most of her life, but it was attributed to her heart problems. When I first started having symptoms, I just thought I had a bug or something, but as the years passed my thoughts changed. When I was dx it hit me like a ton of bricks, then I started peacing things together. My fainting issues when I was a teenager, my constant need for sleep, etc. I soon realized that this is something I have had my whole life. But when my daughter was dx it took on a whole new perspective. I was mad, hurt, angry, depressed. I gave this to my daughter, unknowingly, but I still gave it to her. I had terrible feelings of guilt. I am learning to work through these feelings, but still have trouble dealing with it. My PCP said it best to me. She said "Nolie, are you going to tell me that you would have forgone having children, one of gods greatest gifts, if you would have know that you had this disorder". Hello, smack in the face. Having a child is a gift and we can not predict what they will be born with or without. The thing we can do now that we know is educate us and them, help them through it and teach them to be advocates for themselves. My daughter is 16 and she get very angry sometimes at her disorder, which is CFS/POTS/NMH along with a lot of other health issues. She is learning to cope and I have the ability to educate her and teach her how to manage her symptoms. She is a very active girl and plays both high school softball and tournament fast-pitch softball. She has learned to push her fluid/salt intake higher to be able to maintain her ability to play sports. We have also worked with her pediatric cardio on different medications. Some didn't work and we stopped them, other worked and she's still on them. It's finding the right balance for her. She is not angry at me (as we have talked about this a lot), she is angry at the disorder and how it effects her. She is determined that this disorder will not beat her and that she will stay as active and busy as possible until she either out grows it or it gets the better of her. She still plays sports, works part-time, goes to school full-time, hangs out with friends, goes to amusement parks, etc, and still leads a normal life. Her friends know, in case she would pass out, so they can help treat her. She's even getting her Drivers License in 2 weeks. To her she is sick, to the rest of the world she is normal. She know how sick I am and how much this disorder has limited my life and she still plans on living hers as much as possible. Kids are great. They don't let much get in their way. Including sickness. My advise would to be 1)Educate her....kids are never to young to start learning 2)Don't be afraid for her, let her be her. She will learn with time and guidance from you how to deal and manage. 3)Teach her that she can still do whatever she wants to do. Let her learn her own limits. 4) Talk to her about how you feel. Keep the doors open to conversation. I've learned with my daughter that if I make it a big deal then it is a big deal, If I down play it then she feel safer and more calm about it and deals with it better. As for how you feel...it's ok to feel scared, angry, mad, guilty, bummed, confused, etc. The important thing is how you handle it with her. Keep upbeat about it, but keep it honest. Kids are smarter than we give them credit for. Hang in there and keep talking to her about it. Kids take their cue from us and how we react is how they react. If you ever want to talk to me about my daughter or anything else please feel free to ask. You can PM me or send a message to thejohnsongang@adelphia.net. I would be more than happy to help in anyway I can. I wish you the best in learning to cope and will be keeping you in my thoughts and prayers. Also sending a big "HUG" your way. Hang in there.

I guess we all have our little confessions somewhere. I occasionally forget my meds but my husband and kids try to remind me. I keep all of mine in an organized pill box and keep them on the counter by the sink so I don't forget. As for my other weaknesses.....I love soda..Pepsi is my downfall. I switched to Caffeine free when I was dx with POTS, but still drink it every day. I drink other fluids like water, tea and such, but Pepsi is my favorite even though I shouldn't have it. As for the hot shower/bath issue. I think we all love it. I sure do, but I get very dizzy and lightheaded if I'm in it to long. I always shower with my husband, so if I do have a problem or get dizzy I can hold on to him. It what works for us. I have passed out in the shower before and have suffered the bruises and cuts on my back as I landed on the knobs and stuff. Very painful. We have thought about a shower chair, but I don't want to use one until I have to. I actually enjoy taking a shower with my husband and it's a time we can be close. I know not everyone has this option. We all sneak once in a while and sometimes we pay the price for it, later in the day or next day. I have learned what works for me and my daughter is starting to learn what works for her.

Dawn, CONGRATS on your approval. It is nice to see that maybe SSDI is finally adding POTS to their list of disabilities. What a win for you. I my self an waiting for a hearing. My lawyer is very optimistic about my case and thinks its going to go great. I sure hope so, I just get tired of waiting. It's always good to hear good new like this. Sunfish...Good luck on your hearing.

Hello and welcome to the forum. I'm glad you found us and hope that you find all of us here helpful and supportive. I have 2 children and had HG with my second child. I only had minor vomiting with my first. My fist was born early at 32 weeks. A small 5lb 12 oz girl. I had pre-term labor for 5 month with her and was on complete bed rest with IV medication to stop my labor. I spent most of the 1st pregnancy in the hospital. My second child I had HG with. The doctors here never dx me with it, but from day 1 I knew I was pregnant. I vomited day and night and lost so much weight. I was at the doctors or the ER very often to get IV fluids. They had me take some over the counter medication to try to help with it, but it didn't work. I can't remember the name of the medication, but it was liquid that tasted horrible. I went into pre-term labor again during my 5 month. Around my 7-8 month the vomiting started to go away and I finally gained a few pounds back. I ended up gaining only 6lbs during my 2nd pregnancy. My son was born at 36 wks and weighed 6lb 4oz. Small guy, but healthy. I decided not to have anymore kids. I managed to get 2 here and I suffered with both of them. I was lucky to have them. I didn't want to test the waters anymore. I never knew there was a relation between HG and POTS. I knew I had POTS all my life, but I wasn't dx until 2006. I use to pass out all the time when I was a kid/teenager. The doctors told my mother that it was anxiety and then later my diet or lack thereof. Now we know the real truth. My mother, myself and my daughter all have pots. You can trace the tree in our family for sure. I will have to do some research on the HG and POTS link.

If the allergy is effecting your breathing to the point of having trouble catching your breath or worse, I would defiantly go to the ER. You might want to see an allergist for something you can use at home like an Epi-pen. My daughter has severe food allergies called Eosinophil-associated Gastrointestinal Disorders (EGID). Here is a link to their site http://www.apfed.org/egid.htm#egid. She suffers some of the same symptoms as you described for your strawberry allergy..... stomach ache, cramping, sweating, cold clammy sweating, fever, trouble breathing, vomiting, coma. It took her being in a coma at age 6 and our local hospital transferring her out to John Hopkins to get her dx and treated. We carried an Epi-Pen for years until she learned to take charge of her diet and be very careful. You should defiantly get it checked out by an allergist to stop something worse from happening. Each reaction is different and it could be worse next time. I hope that it is not, but just to be safe....get it checked out.

Thanks for all the comments. I love showing off my kids. Glad everyone enjoyed seeing them and with all that I have had going on with Anna I thought those of you who supported me through her tests would like to see her. I passed all the comments on to her and she said to tell everyone thank you from her.

Now I'm going to show my age...I loved this show and thought it was one of the greatest ever when I was growing up. I loved the link. They came out with a movie about the show fairly recently. It starts Will Ferrell and Nicole Kidman. Here is a link for those of you that haven't seen this movie. http://www.sonypictures.com/homevideo/bewitched/index.html You can click on the previews and clips at the top and see some of it. This movie is not a good as the original show, but still hysterical. Shirley MacLaine plays her original part in the move as Samantha's mother Endora. Uncle Arthur is even on there. No Doctor Bombay though. What a shame.

Becca, Don't ever be sorry for posting anything you need an answer to. It helps to have your own thread to deal with your own issues. You are going through a lot right now and need support. Not only from us on this site, but like Julie said from your doctors as well. It is a very long hard road. You have to learn to be assertive and outspoken about needs and wants when you see a new doctor and sometimes with your current ones. But at the same time, be calm. When you get upset or angry that only shows them the emotional issues you are dealing with and they place you in the "crazy" category. I have learned from many here on this site about my illnesses. I have learned that I am not crazy or attention seeking and I hope you find the same. Prof Mathias and his team seem to be a good support for you, so ask him to recommend another therapist for you. Or ask to see someone else in the same practice. Who would want to talk to some one that acts so dreadful and doesn't understand you or your illness. I can understand how you feel. It is hard to find a good doctor that not only knows about your illness but that understands what you are going through. Having a chronic illness is hard to deal with, but please try to keep your chin up. We are all here to help support you. Your life does not have to be like that of your friend. Losing a friend is very hard and it takes time to morn and deal with. It is very hard to see someone you care for suffer and pass away from an illness that is the same or similar to your own illness. It makes our life seem so much smaller and it also bring to light the sense of our own immortality. Seeing a therapist can be a big help if you have the right one. It sure sounds like you don't. Continue to search to find one that works for you. It might take a while or you might find one right away, but don't give up until you are comfortable with the therapist you find. Validation is very important to those of us with chronic illnesses. At least it was for me. I always felt the need to prove my disorders because they were not easily seen. I know that when I got dx, I cried...A LOT. It was proof for me that I wasn't crazy..but suffering from a true illness. I felt the need to have to prove myself to my family, my doctors and my friends. In a way I felt I had to prove it to myself. After years of being told its in my head and trying different medication, I was beginning to think that maybe it was. It has taken a while for me to come to terms with my illnesses as well as being misdiagnosed for so many years. I hope and pray that you can find the right therapist for you and come to terms with the fact that its not in your head. I will be keeping you in my thoughts and prayers.

I take singulair 10mg 1x day for seasonal allergies. I use to use an inhaler, but it never helped so I stopped using it. I take 4 different medications for allergies, but still have only slight relief from my symptoms. The allergies have never caused breathing issues, just sinus stuff and eye stuff. The breathing problems have been an issue for quite a while, but we have never found something that works for me. I have learned to just lay down or sit and rest and let it go away. I get out of breath just walking from the couch to the dinner table(maybe 5 feet). The slightest bit of movement causes me to get out of breath. I have had all kinds of tests done and the doctors have found nothing. It was just chalked up to being out of condition. I know it is more than that, but I haven't been able to get any of my doctors to understand that. My cardio said it could be related to my severe tachy, but I get it even when my tachy is under control. I couldn't even finish my stress test do to being out of breath, but my oxygen levels were normal. It was once explained to me that I have no reserve energy. That once I started to move, my heart rate would increase drastically and my energy stores would deplete quickly, therefore causing my excessive breathlessness. Not sure if that makes since or not. I know what I want to say, but when it comes to typing it out..it changes some how. Anyway, the first doctor that dx me with POTS is the one who told me that. I agree with Julie, that all the symptoms overlap and get all tangled up. It's hard to understand what symptom is coming from what illness. It gets very confusing at times.

Becca, Welcome to Dinet and I hope you will find many people here who can help. We all understand the issue you have of being told it's only in our heads. We have all been told that at one point or another. We strive to overcome that and find doctors that know, understand and believe in our true illness and not blow us off by telling us it in our heads. I would continue your search to find a doctor that understands your condition and that is willing to work with and treat you. You might be able to find a doctor by talking to other people here that are from the UK as well. We all suffer daily and try to keep our chins up while doing it. Having a chronic illness is very depressing and is a burden on us as well as our families. When your alone, struggling with a chronic illness it is worse. We all get up daily and tell ourselves to be healthy and to feel better. We do this many times during the day just to get through the next hour or to get through the next bought of pain. But doing this does not make our symptoms or illnesses go away. It is to try to keep our spirits up to deal with our own personal need at the time. Our forum here is a very positive one and we all need each other. We work together to help each other through trying times. I'm sure you will find this forum one for great support and understanding as well as knowledge. We are all here for the same reason...We need to talk to people that understand. Plain and simple. In doing so we learn about our own disorders, learn different ways to cope with them and share our research and good doctor list. Anyone telling you that a disorder is all in your head after it has been dx, documented, witnessed and treated by a doctor is the crazy one. We all will continue to suffer from this enigma until more research is done and answers are found. You might want to check out the post of "I know this is a touchy subject."...It is a thread that talks about this same issue. Anyway, I hope you find the support and understanding that you need here.

I have issues with my eyes and have for years. Not the same that is mentioned here, but similar. When I first wake up and for about 15 minutes to 1/2 hour my eyes keep going to the out side. My left goes to the left and my right goes to the right. My husband and I laugh about it, but we have never found out what causes it. My doctors haven't been able to find out either. I can't get up and move around until they settle down. I also get eye twitches all the time. Not sure if its related in anyway to my disorders or just my eyes trying to adjust to light.