sally

Thank you for your well wishes. Poohbear, me too....It has already been longer than expected which has been a frustration for her but we are thinking positively with the finish line in sight now. Hope all is well for everyone out there in forum land.

Hi Sue, Congrats to you and your daughter! Its always fantastic to hear good news. Its great that her boss noticed and appreciated her efforts and is a reflection of how hard she has worked. Great job!

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Hi Corina, I'm confused, how can a rehab center refuse someone who has a diagnosis written in the chart by numerous doctors? Did the doctors write a referral or prescription for rehab? Why does this mans viewpoint over ride a physicians? Is this an insurance issue? I would call this man right back and tell him that he cannot over ride what your physicians have already stated and documented. He does not have the power or authority to do that, especially if he is not a physician. That treatment by this person towards you is totally out of line. Good luck and I hope your physician can help straighten out that person and clear things up. But, I would also call to speak with who ever is in charge over there to enlighten them abit about what has happened and how you were treated by this person especially denying what your physicians has already plainly stated in your records about your diagnosis of pots and the attitude you received just because this guy doesn't believe in it. Also I would consider looking for another place if you have that available to you, as they don't seem to be educated on Pots nor want to be shown by this persons actions. Maybe send them information on pots, maybe that would help them for the future to help them understand the issue. Best wishes,

Hi, I think its best to just move around a little bit even if you just stretch and move your legs and feet around in the seat. The only time I have had a problem is when the plane descended too sharply and the plane tilted a certain way, then I felt it lower my pressure on the spot. I've only experienced this a few times in my course of flights that have been many, other than that no other problem noticed.

Dear UnicornIsis Hi, I totally agree with Sophia, those type of individuals will take all of your energy and it's usually best not to get involved with that type of person unless you have plenty of energy to waste. Speaking as a 20 year (now retired) military wife that has traveled around over the world and seen and met many types of people, you have to be careful with whom you decide to devote your energy to, especially since energy is a limited commodity on a regular basis. I take it you are living in military housing? either or, over the years while in the military, we came across some live ones ourselves (more than I cared to know about) like your neighbor, and I found that a lot of people who were having the most major problems with their situations were the ones who were drinking heavily and making other unhealthy unwise choices and didn't take care of themselves let alone their families so the children and husbands or wives, whatever the case, suffered terribly such as what your neighbor is doing to her son. My advice to you from experience with this is avoid those type of individuals like the plague and just to concentrate on your family, home, church (if you are so inclined), any military wives function you can attend for entertainment and outside socialization. They usually have some volunteering going on the bases here and there, even if you are only able to physically do minor things, it does help. It makes you feel needed and good inside and also helps out where needed. Another thing I did (even if you do not have children) is volunteer at your local school especially if you have one located right on base, they are always in need of people to help out where ever needed to Xerox papers, typing, help out the overworked teachers, or office staff. They usually will take whatever hours you are able to give them, or work at home and deliver the papers back plus you'll meet outside people. Another thing is to do is volunteer at a nursing home or local hospital, you'll meet some super people and again the hospitals are usually very grateful for any time you can donate to help when you can. You can also explain health issues and they will understand the limitations if you can't come that day. I've had health issues through our entire marriage and the entire 20 years of time while he was in service so I understand how you are feeling. If you are not physically able to contend with things outside the home at this time, you may in the future so be patient with yourself and pat yourself on the back for being a military wife and taking care of your husband and home especially if he is off on his duty. You deserve a pat on the back, its tough stuff being a military wife and there when the hubby is gone alot especially if you have health problems that very little people seem to understand. Good luck and best wishes to you and your family.

Hi Megan, Congrats on your goal! I don't know about Law school, but both our daughters are in college full time and have health issues to contend with as well so on that level we can relate. Our one is looking at going to Medical School (she is also a junior in college now) so as far as recommending the how too.....It good to look into the disability aspect of the Law colleges and see what they offer as far as accommodations to help you. Each school may be different but they are not permitted to refuse a person due to a disability, it's against ADA federal law. As far as working full time and paying for Law school, you might want to check into student loans to help, you may be able to get a very low interest rate loan and some loans depending on which way you go with them, don't start require payment back until 6 months after graduation and by then you're usually working (after grad school) as long as you don't stop being in school for any length of time as per their requirements. There are also deferments you can check into for these type loans if needed and approved. Also the grad school may offer financial aid. I agree that these graduate schools can be quite expensive so I think unless a person has been clever and saved or fortunate to pay out right towards these type schools, most people just get student loans. Including Doctors, at least quite a good number of them anyway. You can also pay as you go towards educational loans etc....Most of the schools financial offices should be able to help you out on this for ideas and advice as well. Plus there are scholarships and grants out there you can apply for to be able to better concentrate on school instead of working your self like crazy while attending grad school. Does your college have an advisor you ask as well? The finance officers at college or particular grad school may be able to better advise you on these matters but ...... here's a couple of good links you may find helpful.... http://www.a2zcolleges.com/law/us.html http://www.gradloans.com/fa101/fedaidpgms.shtml http://finaid.org/otheraid/ http://www.wfedsuccessloan.com/ http://www.salliemae.com/ http://www.pslawnet.org/ These are just a few, there are many others out there that have a ton of information. Good luck and let every one know here how it goes for ya. We're busy pulling our hair out as well, gathering everything & information for our daughters especially the one that intends to be heading off to Medical School.....I try not to look at the prices too much....sticker shock sets in big time! And, we have two in at the same time....I'll be so glad when one is finished that I'm going to do a jig!! Isn't there a test you all need to take as well for law school ....the LSAT? or something? good luck with that as well. As far as dealing with health issues, you just do the best that you can, when you can, we've dealt with alot of health issues in our family and had alot of set backs here and there but try to stay the course after dusting ourselves off time and again from falling. Just keep your goal in mind & in sight, doesn't matter how long it takes you to get there, it's all about balance with these type health issues in doing anything no matter what it is, so whenever you arrive at your dream that when it's suppose to happen. Even if you have to take in stages. Good luck on your dream. best wishes

does your heart feel like its skipping beats or missing beats and one will be harder than the next. If you are just aware of your heart beating, thats called cardiac awareness. Alot of people get that sensation especially if you are a thin person. Laying on your back sometimes will cause you to feel it more. Also tachycardia will make your heart feel like it's running away with itself and you'll be more aware of the beats and a harder sensation of beats. Palpatations are another story though, it feels like its missing beats or a fluttering, for me, my doc told me to cough if palpatations keep happening to get things back in line so to speak. There are a number of other tricks you can try but I would check with your doc on that one to make sure what it is you are feeling first and make sure everthing is okay. good luck If its tachy you're feeling, just trying to relax can be a chore when it's like that, for me, I will try to take my mind off of what I'm feeling by watching a movie just trying to relax because the more you get nervous about it, the faster it can become. Again, there are some tricks you can try for this but I would ask your doctor on this because everyone is different.

briarrose Great one! He's got quite the writing talent doesn't he? He should be writing a book on these things if he hasn't already. Alot of people would like to read these things. There are two more stories on the pages of the one I found, just click onto his linked name on top of the page. thanks for sharing the story.

Linda, I don't know you, but I read your post and what I read was frustration, not anger directed towards anyone. I wouldn't worry about it, you're allowed to get frustrated and feel tired and question things, its okay. If people never questioned things, what an ignorant world it would be right? Doctors usually have a hundred different things on their mind all at once that may have nothing to do with what is going on at that moment so I wouldn't take anything to heart if you preceived something amiss. And, they are use to witnessing the frustration of chronically ill people on an everyday basis, most do not think anymore of it than that. By what I read on the man, I'm sure he was just fine with your questions and the timing may have just been off for him that's all. I have never met this doctor but after reading about him on this board I looked him up online, he seems like quite a wonderful human being and quite understanding as well as a wonderful doctor who seems to be well respected by those who have met him. While reading about him, I came across these stories he wrote I'm guessing (it has his name listed on them) they are wonderful charming stories about the human spirit and a few of his experiences with patients and people in general I think. I thought you all might like to read them incase you haven't come across them yet. I don't know how old they are. http://www.chabad.org/library/article.asp?AID=2609

Brwneyedchica, With Abdominal Migraines, from what I've read on them anyway was that about 62% have abdominal pain with their vomiting or just before it starts. Some have typical migraines along with it but alot do not experience headaches with it. I haven't read that diarrhea has accompanied it though but everyone is different. The vomiting is not usually the typical vomiting episode. It can be quite violent and can continue for days unless treated from what I've read. My oldest suffers horrible nausea bouts that cause her to get quite ill and she gets sick with hers as well. She has a history of migraines but no experience with stomach pain. Hers can last for days on end but taking Midodrine does help it most days but sometimes not even that will make it go away and she just has to take antinausea medication and ride it out until it settles back down. Check out this site for info....I'm not saying that's what you have but it may lead you in a direction. You can have the stomach problems with dysautonomia alone as well as many people seem to have on here. Like our daughter...she has the major stomach problems with hers but the other daughter does not. weird how that works. Good luck and feel better soon. http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/#3

Hello, Our one daughters stomach is very affected by her bp problems with episodes of extreme nausea and sometimes vomiting that can last for days and disappear just as suddenly as it started and it seems directly related to bp. She also gets the sweating during these times almost like having a hot flash but she is only 24. Midodrine does help curb the nausea for her some of the times by bringing up the bp and sometimes it will take the nausea away completely. It also depends if she is run down or not. I'm glad your doc is trying something and hopefully it will work for you but please don't contribute the nausea strictly to possible anxiety because it could just be related to your POTS and it just happens to be a coincidence when your going out somewhere. Also the same daughter had the urinary frequency due to her bp as well. We thought she had something wrong with her bladder but didn't. Midodrine slowed down that symptom as well for her, before treatment, she was having to urinate every 20 minutes and felt like she always had to urinate. It was just the way her autonomic system was affecting the bladder. There are also women (young and old) that have a condition called Interstitial Cystitis that can resemble uti symptoms if you get recurrent symptoms. Good luck and hope you feel better soon.

Midodrine is a wonder drug indeed! really helps us as well. good luck and stay feeling well.

Hi Janine I think this is a great topic to discuss. For myself, I feel contented and at peace spiritually. I have had health issues on and off most all of the my life and not as healthy as alot of other people that have been around me during my lifetime and I think because feeling badly alot of the time is my norm; I feel it has taught me to look at the lighter side of things and appreciate life in a different viewpoint. My now adult children also have had a great deal of genetic health problems to contend with in their lifetime as well. We like others have definetly been through the wringer at times. They also have seemed to adopt this outlook, I think pretty much anyway. It is our norm so we accept it and go on with what ever we can whenever we can. Sure, we do get frustrated when we would like to do things instead of having downtime or are facing setbacks yet again, but it beats the alternative in my eyes. When younger, I use to wonder why things were like they were, but it was more of wanting answers for things rather than the why-me type of thing. After finding out answers for our health issues it took a great deal of weight off and gave me acceptance. Plus, I learned to just let go of the 'keeping up with the normal people' without feeling guilty. Guilt is a big anchor and does no one any good. I do not blame God for our health issues or feel mad at him that we have them...I just figure it's part of living and it can always be worse in many ways. I feel personally that having these issues has given me wisdom, and a inner strength to overcome. The only thing that really bothers me is that I have given these problems to my girls to deal with...that I do wish wasn't the case. It has been the hardest thing for me, watching them deal with setbacks etc due to their health issues. I tend get a powerless feeling during those times that I do not like. But, when they succeed at something that they have worked harder for because of their health issues, than most people around them, It makes my heart soar. I have alot of admiration for their young spirit and strong will.

Hi Mary, check out this link, and see if it better explains what you might be feeling contributed from your migraines. there are several different variations listed. I would imagine, during a migraine wherever the pressure is being applied on the brain area, it could affect anything and could cause bilateral paralysis. For example, during some, my daughter literally halluciated seeing things that were not there and also it would always cause her have the urge to urinate constantly during these migraines even though there was no urine in the bladder as well as not being able to move body parts or hand grasps. it was horrific. It just was that particular signal being sent from the brain area that the migraine was effecting. She also had alot of mris and ct as they would suspect a possible stroke at the time but always came back fine. Also her speech would slur and she had ataxia. I would question your neuro again rather than wait and see as he suggested. Also, with this type of migraine it is suggested that a person never use the imitrex type medications. Good luck and hope you are feeling better soon. http://www.emedicinehealth.com/articles/37055-3.asp

Hi Mary, Has your neuro looked into hemiplegic migraines as a source for your paralysis episodes? Our daughter was diagnosed with HM after experiencing periods (only during a migraine) of not being able to move certain parts of the body and numbness (stroke like symptoms) she was a young child when they started. HM suffers are only about 10% of migraine sufferers I was told that is why it might be more difficult for a physician to recognize it. They are very severe in nature as well with other symptoms. here's an information link for it incase you might like to see it. http://headaches.about.com/od/migrainedise...iplegic_mig.htm good luck and feel better soon.

Hi Hayley Has anyone ever addressed your EDS and how it may effect your body? EDS will cause laxed vessels in your body and effects blood pooling and blood pressure issues. Plus chronic forms of pain in joints and various pains in muscles etc...also fatigue. Wishing you the best.

Hello to all. great answers to this question, which the answer can vary from hour to hour depending on the day. I don't go into things very much with people outside my immediate family members, I find that most times outside people just do not understand. I usually say good or fine even though i'm dragging but I have said "well, I'm on this side of the dirt, so I'm happy". That got me a real good laugh from that person. I have this one lady at work that always ask me how I'm feeling and always has this concerned look towards me like I'm dying or something....that makes me real uncomfortable. I must look worse than I thought.

Hi Jen I read your brain fog description...I think alot of people who have this problem experience the brain fog thing here and there, but if you are having trouble remembering where you are or forget where you are going (directions type thing especially if it's a traveled direction you usually take).......you might want to have your thyroid level checked. An off thyroid can cause this type of memory problem. Just a thought. good luck

Nina, I don't usually like to suggest what medications someone should try but given the fact of the chronic severe migraines....have you ever tried taking propranolol & amitriptyline as a combination as a preventative? Those two medications works wonders in reducing not only the amount of migraines per week/month but also the severity of the ones that our daughter was getting. She had hemiplegic migraines that were severe and often. It took several months of playing with dosages but after a few months we did see actual positive results. There are numerous studies online talking about the use of these two medications in migraines that show positive results. Just wondering if you've ever tried them together?

Nina just made an excellent point. About breaking the pain cycle. Whether it is through massage therapy/PT or medications or just a hot bath it is important to try to break that pain cycle when possible. I think when the pain is too intense it can completely drain you and then cause lack of sleep which in turn make the pain level rise or stay longer. It is a continual cycle so it's important to find what works best for you to give you relief. A good restful sleep is a big help to restore things as well which seems to be hard to come by for alot of people with dysautonomia and / or EDS. Good luck and well wishes sent your way. here's a good link for information about chronic pain.. http://www.theacpa.org/index.asp

Hi With EDS, personally, I would stay away from the muscle relaxants, ( unless your having spasms at the time) , due to the laxed muscles/tendons that EDSers have a problem with anyway that are located around the joints, you don't want more relaxed muscles on top of already laxed muscles. (lack of support for joints) What you are describing could it be contributed to joint stiffness rather than muscles? Most EDSers have chronic multiple joint pain from what I've read and some are more severe than others. Weather can play a part in the pain or make worse for some reason. I believe there are about 50% of the people who have chronic pain with this disorder take a narcotic type drug of some kind to help the pain level but there are also other alternative methods to help make the pain more tolerable as well. Recommended are finding a good physical therapist who aware of EDS and build up stronger muscle around the joints. (helps the most) Some use Chiropractors for re-alignment of joints and vertebra....some say it helps some say not. (we found this helpful although very temporary) Acupuncture - helps with muscles and pain level to relax. (we found this helpful although temporary) Splinting for different joints for walking or low impact exercise. Also ring splints for aid in writing etc. Tens Unit - applied for pain Warm bath or heat pads on joints Relaxation methods to help focus mind off the pain. Personally NSAIDs or any other type pain reliever does not touch the pain in our case. Herbal or MSM did not help in our case. Pain is described like a burning ache within the bone/joint its self - if pain is located in the knee can feel like the knee cap is exploding out EDS does not cause warmth to joints or swelling to joints unless there has been an injury that has occurred. I think it is a personal choice to take narcotic medication, it can help alot of people but sometimes it can cause a whole host of difficulties itself depending on the medication or dosage. If you choose to take pain medications I would recommend finding a very good pain management doctor that understands longevity and will be practicing with you quite a while because just because one physician agrees to give narcotic medications for pain management doesn't mean another physician will. I have seen people stuck in between the two situations and they end up hurting and very frustrated and then are labeled (which is a shame). Some people also use Neurotin but I'm not sure how well it works plus I believe that the body gets accustom to it and you have to continually up the dosage. Some people take antidepressants that seem to help with the pain as well. I think it is a varied method of treatments that seem to help people, it differs with each person and no regimen that works for one person is guaranteed to help another.

Hi Julie, I'm sorry to hear that you are feeling so badly. I wish the best and hope you are feeling better soon. I also agree that for me, Flourescent lights seem to bother my eyes and make me feel a bit off. I don't understand it though. I don't have that problem under any other lighting, just flourescent. strange... hope you are well soon.

Thank you for your replies and suggestions. I am going to ask the doc about Zofran for the really bad days. I get worried because when she gets these episodes, they last too long and she cannot eat much at all. Then they will disappear and stay away for days until the next episode. She also has Ulcerative Colitis as well as EDS III with dysautonomia problems. So I think the combo probably help at all. Plus all the medication she must take for the UC. The midodrine seems to help some but not enough anymore. We'll see about getting her medications adjusted to maybe an additional medication to help out. Thank you all again and I sure wish the docs would come up with a solution or answer for this one. WI mom, we can relate to the no energy as well. Thank you for your suggestion of a medication, I wish it would go away but she has unfortunetly suffered chronic nausea for about 5 years now I think, It did get a little better with Midodrine but I think it's probably time for a re-adjustment to the med now. But, I will certainly hope for the best and thank you for your well wishes, I appreciate it.

Thank you for your replies. I would be most interested in seeing what you may have Melissa on this problem. I did take the liberty of contacting a physician who specializes in orthostatic intolerance problems and he stated that "Nausea is commonly associated with orthostatic intolerance but we do not know precisely what nausea is nor its exact physiological correlates. We relate this to an increase in blood flow to certain parts of the gut." However, he mentioned he was interested in the use of a medication called Emend. I appreciated the time this physician took to answer my questions. And I hope he does find some answers soon. I know everyone who suffers from nausea would most surely appreciate it also. He also mentioned a study group that he has for POTS patients, I'm not sure if you all know about an ongoing study group or not but if you are interested just holler at me, I'm not sure if I am allowed to put his website for that on here. If so, just say so...I saved it. You all may have already been aware of it. Best wishes,