sally

Hi, I read that 20% of the popluation have difficulty with flourescent lighting that is used in most all dept stores, malls and employment establishments. and it makes people feel strange. It has to do with the intense flickering of the lighting or something. It can have an effect on the nervous system and cause intense symptoms in some people to the point of not being able to be around them at all. Below is a link for some information on just one disorder that pertains to inability to deal with certain lighting and among other things. From what I've read about it, alot of diseases/disorders seem to be affected by certain lights. http://www.irlen.com/sss_main.htm

Dear Karyn & Steph Thank you both for your thoughtful and informative replies....sorry, it took me so long to respond, I was feeling badly for a few days so didn't get around too much. We will take into consideration what you suggested and check out various specialities that might have better allowances for health issues. This next year will pretty much be the test year for her because of the work load of studies....Karyn, I'm sure you remember that lovely Organic Chem class & Physics? So, we'll just keep showing support and hope for the best. I've got a question for anyone out there that might have experienced this one..... have you ever had your heart rate drop down in rate all of a sudden? My heart rate ususally runs 100-130s depending on the day, resting is about 80s. I've had a few times lately that the heartrate has dropped to 60 while standing and doing something, noticed after I felt weird in the chest and alittle lightheaded. I have never had my heartrate at 60 that I know of...usually it is beating like crazy most of the time like a jack rabbit! Weird stuff! Well, hope you all are having a feel good day out there.

Hi Karyn, Thank you for your quick reply and response to my message. I appreciate the information you shared about your experience, it really helps paint a picture of what might be to come so to speak. It'll help give an idea of what to expect. I talked about you with her last night and it really helps that she hears someone made it in spite of having major difficulities to overcome. We support her wholeheartly but as parents we worry as well about the physical exertion of it on her body. Her mind is very strong and determined but she gets frustrated having to deal with so many physical issues while trying to accomplish what she wants. I think that's a big struggle for her. When she looked at the medical profession in the beginning as a possible goal she considered what might be the best solution to her problem (being able to sit more/less demanding) but I guess we'll all find out more as time goes on. She is also interested in the research side as well. One big help for her was her Cardiologist (a Godsend!) put her on Midodrine, without that I don't think any of what she is doing would be obtainable. It has helped her alot but not much of what we have tried over the years has helped her chronic pain issues much except moving her to a warmer climate gives her some relief. Again, I appreciate the time out of your busy day and effort you took to write and I hope you have a wonderful day. You are to be commended on your accomplishments while dealing with this health issue as every one on this board is as well. Have a good one.

Hi Karyn, I read your well thought out and well written post. Its great to hear from a physicians point of view as well as the patient side. If you don't mind me asking.....How did having POTS effect you do during your medical training? Was it much worse for you that it caused delays in your education & career? The reason I ask is my youngest daughter is looking towards medical school within a few very short years (coming up on her junior year next year and will be pulling her hair out studying hard for the MCATS). She loves the biological sciences and is very interested in becoming a radiologist but is also interested in genetics & virology. We know her brain will make it but have concerns if the body can tough it out. She has alot of chronic pain issues (EDS) to deal with and also the orthostatic/fatigue problems. She has worked very hard while dealing with these issues and bound and determined to succeed in what goals she has set for herself and I think it would do us all some good to hear some positive input from someone who has been there. I would be very interested. Personally I would rather have a physician that can relate to having health issues, not that I would wish anyone to have an illness but it does make a person more human and compassionate as well as giving understaning towards what their patients are experiencing, I believe anyway. Thank you for your time and any input will be appreciated. It is wonderful to hear about your success in becoming a physician while enduring and in spite of this awful orthostatic health problem. Thank you again.

Hi, I'm sorry you had a negative experience. I think it?s a shame you had such a bad response with that particular researcher in the understanding dept. Hopefully you'll get another opportunity with a different researcher in the future that will be more understanding. I think researchers as a whole are genuinely interested and honestly want to help a great deal towards solving the suffering of humanity otherwise they wouldn't be in the field of career they have chosen for themselves, long hours and considering that alot of the funding is based on grants probably too little pay. But, I also think that not just one individual is going to hold all the answers, no matter how much the expert the physician thinks he/she is (my own opinion). From my personal experience, although from a different genetic problem (ehlers danlos) the genetics researcher was very informative and very helpful and inviting for any future reference as well. This particular person was from the NIH, maybe you might have success there for better answers. I also wish more consistency could be obtain in treatment but it seems as we are all so very different with various degrees in severity and symptoms, that idea seems like it might not be possible. As with EDS, the amount of information I have obtained has come from a various multitude of Physicians, researchers, genetics personnel, physical therapist as well as from the people themselves who have this problem. good luck to you and have a feel good day..

sorry please ignore the previous posting....I'm not sure what I did but it didn't go well. Anyway, Welcome and hope you're feeling better. If your previous medication was not doing what you need, have you tried Midodrine yet? It works well for us and I like the fact that it has a short duration in the system and you can use it only when you need it instead of taking something every day. good luck.

A person can be very flexible and not have EDS. Ehlers Danlos is usually suspected when there is a collection of problems or signs presenting themselves as listed in the EDNF.org site. The earlier the diagnosis of EDS the better though especially if you are young and involved in sports, dance or many physical activities because of the importance for proper splinting for many individuals. This is to avoid constant dislocations or subluxations and lending to the possibility of permanent damage to the joints and surrounding areas and making the joint pain worse. As in our daughters case, we didn't know about EDS and years of dance & heavy sports playing caused terrible bone bruising and damage to multiple joints and alot of permanent pain that was unnecessary if we had just known that she had this problem we would have handled things differently as far as proper spinting, supporting the joints while playing and specific exercises to build muscle in those areas needed. Doing these things after the damage is done is just strictly damage control at that point. Also during any PT or occupational therapy it gives the therapist better knowledge of what they are working with to build up what muscles for support of the joints that the ligaments are not capable of doing and for the patient to maintain strength in those areas. Also anyone diagnosed with EDS it certainly does not hurt to have an Echo done to evaluate the Aorta and valves. Depending on the type of EDS it can be a problem even within the type IIIs they have found problems in that area.

Hi Kathy, Has your daughters? physician told you what type of EDS she has? Not to second guess what he is referring to but he could mean that she has a mild form of EDS compared to the more severe types and has dysautonomia as well. From what I have been told by numerous physicians one of which is from Johns Hopkins is that people who have been diagnosed with EDS usually receive a dual diagnosis of NMH. Due to the laxed vessels etc. If she is having difficulties standing for periods of time due to low blood pressure and having problems with dizziness that maybe the doc might want to revisit the diagnosis of mild form status and see about a more aggressive treatment so she can function at a more normal level, or at least as normal as one can get dealing with these things. I don't think we're ever fully at a normal capacity unfortunately. Plus her pain level could be due to the EDS as well and there are steps that he can direct you toward to help ease the pain level abit. Have you seen a geneticist or cardiologist for evaluation for EDS? Has your daughter had a tilt table test done? I'm not sure if they do this at your daughters age but it also helped determine just how bad the situation was to our cardiologist in our case. Someone else on the forum might know if there is age limit for tilt table testing. There is a super doctor that is in the genetics dept at CHOP in Phila and a great one at Johns Hopkins rheumatology that is just super for information about EDS and the affects it can have on a person and was a great help to us. If you need any information on what steps we took that might be helpful for you as well just let me know. If you are new to this, it can feel quite overwhelming...I felt as though I was on knowledge overload most times during the more difficult part of the illness. http://www.ncbi.nlm.nih.gov/entrez/query.f...4&dopt=Abstract http://www.hopkinschildrens.org/pages/rese...?spotlightid=44

Hi Radha, In a nutshell: (quoting first paragraph from EDNF information): "Individuals with EDS have a defect in their connective tissue, the tissue which provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein which acts as a "glue" in the body, adding strength and elasticity to connective tissue." EDS (Ehlers Danlos Syndrome) is a genetic abnormality that gives the person faulty collagen which causes a whole host of problems for the person which can effect your whole body system. It is usually diagnosed by a Geneticist or a rheumologist who is aware of this problem, as not all are educated enough about EDS to diagnose it. Anyway, the term loose joints are not just the single determining factor in EDS, it a combination of things that they look for such as how many and what joints are loose and just how loose is loose. Also stretchy skin or velvet like skin and other skin problems such as easy bruising and paper thin scarring that occurs over nothing, slow healing etc, tissue fatigability, chronic fatigue and orthostatic problems, intestinal problems, history of migraines, etc. You heart valves and aorta can be affected depending on the person?s severity and what type of EDS you have. Ehlers Danlos Syndrome has six major types. Some types can be deadly and can affect the major organs and intestines that can rupture. MVP can also be a problem with EDS. The hypermobility type or type III, which is the most common type I believe, can display chronic and debilitating painful joints (multiple) and some have stretchy skin that feels very dough like with this type and some do not but the painful joints can be awful and keep many people from functioning. The doctors will look for how many joints and just how far a person can bend or go beyond what is a normal range of motion without much effort or pain. When a person has EDS they can usually stretch their joints and move their joints grossly out of range of what is considered normal. They can also experience dislocations & subluxations on a daily basis without pain (unless a nerve is pinched) that would put any other person in the hospital on sedation for reduction. They can just pop it back in usually themselves with no effort. They will also experience stiffness as well sometimes depending on the person and what damage has been done to the joints over time as osteoarthritis will set in over time. The treatment is lengthy and complex and requires a combination of things such as PT, medications, splinting, lifestyle changes, etc. The best source for knowledge of Ehlers Danlos Syndrome is http://www.ednf.org/index.html They have a ton of information. Hope this helps you and doesn't overwhelm too much

Hi Kathy, As far as the migraines, has your physician tried a combo drug therapy yet? My oldest that had migraines (hemiplegic) since age 5 that were just awful throughout her years, averaged about 2 x a week at some points in her school age about your daughters age. They finally put her on a combo of Elavil & Inderal and over time it seemed to work well for her until finally she could be weaned off when she no longer was having chronic migraines. As far as the pain she is having, what type of pain is it? I'm not sure if you read my reply to your last message about loose joints but if she is hypermobile that can cause chronic joint pain as well. There are several things that can be done at school to accommodate your daughter to make things abit more convenient for her to get through her day once she feels well enough to attend. If you haven't already done so that is. The first we had to do in our case was eliminate gym due to pain and fatigue dizziness blacking vision it was just impossible to expect a person to do exercise. Plus writing hurt the hands and wrists so she was provided with laptop at school, extra time to get to classes etc. extra books to avoid carrying the weight. Any exercise was water related and lots of PT to strengthen the ligaments & muscles that helps with the pain. With this problem, she will experience times like she is now unfortunately and it seems to be a combination of things that help. I'm sorry to hear your daughter has to go through this, we can relate, it was agony for us to watch our daughters going through the frustration and illness especially when they have to give up things that they love doing until they get a little better. As I'm sure many parents of child who have a chronic illness, it feels like the hardest part. But I can tell you after many years of dealing with this illness and believe me, many others illnesses at the same time such as Ulcerative colitis and EDS we have learned kids are strong, they can work through much more than adults I think, they just have to know that they are not defined by their illness (whatever it is) but that they are stronger because of it. It just doesn't feel like it sometimes and its only a matter of re-arranging somethings to make life easier to function and finding the right medications and correct program of things to make the person stronger. Another medication that seems to work well for us for the low blood pressure is Midodrine, although if she is experiencing migraines constantly she might not be able to take it at this time, your neurologist would know better on that one. We also found out in our daugthers situation that certain trigger foods would bring on a bad migraine as well such as chocolate, pepperoni, certain fruits sleep habits etc. Good luck and hope the info helps. There is a wonderful link of information about sick and worn out children at http://home.bluecrab.org/~health/sickids.html (this has a ton of info)

Hi Kathy, Welcome and sorry to hear about your daughter having to deal with this problem. I read your daughter has loose joints. You might want to look into seeing (if you haven't already done so) a genetics doctor to be evaluated for Ehlers Danlos Syndrome. There are quite a few hypermobile people that also have a form of dysautonomia that seems to be a secondary or dual diagnosis that stems from having the EDS. If a person has this and has loose joints etc they also tend to have laxed tissues and vessels causing blood pooling and orthostatic intolerance. EDS can cause a whole host of various problems as you mentioned in your message along with chronic joint muscle pain etc, also digestive problems as well. Both our girls have this and we can recommend a very good facility for appts if you are in our region and if you are interested. A good source to read about this problem is EDNF.org. Good luck and let me know if I can help you with information. We've been through quite alot with this and went through a very trying time before diagnosis was made and learned alot of helpful tips after diagnosis to function better. We've learned a ton about EDS probably more than a person ever cares to know but we feel that knowledge is power especially having a not so common problem to live with.

Hi, Sorry to hear about your visit, this family doc sounds like an idiot! Who ever heard of localized hip and coccyx pain from low fluids! Are you seeing a pain specialist for your chronic pain? I would say that it sounds like you made the right choice to stop seeing him, who needs that treatment while feeling poorly at the same time. Our youngest has gone through some pretty tough pain problems for many years and through a pain specialist, physical therapist, chiro & acupuncturist it only slightly helped her through some pretty tough patches, but it was a combination of treatment that we used and never once was it suggested that it was in her head by anyone. I agree that sometimes people might need support with dealing with chronic illness from a therapist but for the doctor to automatically assume that it's totally in your head is irresponsible on their part as a physician. Usually these type docs are ones that are usually frustrated by not knowing what is going on with the patient and not willing to say "I don't know". From day to day, with a chronic pain problem any new symptom could represent a new problem that has nothing to do with the chronic illness. Pain in the hip area could be anything from female problems to a pinched nerve in the spine or an aneurysm or GI problems. Anyway, seeing a therapist for chronic illness is to help people understand how chronic illness impacts their life and how to deal with it so a person can get back on the track of things of daily living, it is not a catchall to explain away chronic pain so a doctor doesn't have to deal the patient anymore. If that's the thought process of the physician, I'd say get a new one because that's not the type of doctor anyone needs treating a chronic illness, no matter what it is. Keep searching for another physician who will provide good patient care as well as an understanding about chronic illness. Might I suggest you see someone in a major teaching/research hospital such as Johns Hopkins? They worked wonders for us in the past and helped us understand what we were dealing with on several illnesses.

Hi, it could be due to anything from dehydration to low potassium to just plain overexcertion of the muscles from too much strain on the muscles to thyroid problems. sounds like you also had a panic attack of some sort while this was going on, you should have went directly to the ER while this was going so they could draw your blood to check your levels for the above.

Hi Kathleen, I think it depends on where the ET effects the body if it causes gait or balance difficulties. In mine, ET tremor shows in the torso and hips,legs and ankles which can cause walking problems when its acting up or if I didn't take meds. On the EMG which shows the tremor registers a certain wave or measurement of speed of the tremor to determine which type of tremor you are experiencing, plus if the tremor is action or resting comes into play. From what I've read on it, its not too common to have the tremor in those parts of the body, most people have the head bobbing tremor or hands. We also have Ehlers Danlos Syndrome in our family which causes laxed ligaments etc that can cause a sort of clumsy appearance to your walking among other problems that EDS gives you. Both my girls have been diagnosed with this. It comes from me/my side of the family. As far as the OI we all three have been diagnosed with NMH/NCS but have a ton of the pots symptoms but since the medication is pretty much the same for treatment, haven't really pushed the issue with the cardiologist. Both conditions seem to have pretty much the same response on the body and as long as the meds work fairly well I'm content. I was told that the OI mostly is caused by the Ehlers Danlos due to laxed vessels etc by Johns Hopkins but the cardiologist is not so sure. I know alot of EDS have blood pressure problems from what I've read and it is usually a dual diagnosis. We hit the genetic lottery I guess. I'm sorry to hear about the PD, I can relate to having multiple health problems and the frustration it causes. I agree with what you said about the blood pressure issue, in my book it is by far the worst thing over anything else I deal with also. I think because it's an up and down problem throughout the day and causes mental fog & weakness...at least for me & my girls. sometimes we feel like we're on a natural drunk! Good luck and have a feel good day

Hi Kathleen, I knocked myself offline by mistake before finishing my reply...sorry. How long have you had parkinsons if you don't me asking? I'm glad the surgery helped you with your tremor. I thank you for your reply and I wish you all the best and hope you continue to feel good.

Hi Kathleen, Thanks for your reply. Yes, I was told by my neurologist about surgery for this problem but so far medication has helped me a great deal. Without it, I'm afraid I wouldn't be able to create and paint like I need to, let along write and walking would be a bigger problem at times. That surgery is suppose to be a great relief to alot of people who have this problem in the severe stages that cannot feed themselves due to severe tremor or have severe gait problems to the point of not being able to walk around without falling over. I'm one of the lucky ones who medication does the trick, it's only when I'm coming down with something like the flu or cold/virus or whatever, my tremor kicks in high gear. I feel it especially in my spine torso area at those times. That's one indication that I'm getting sick or overtired so I just slow down and rest more when that happens. Before medication I was at times having great difficultly walking...tripping over my own two feet and was fearful coming down steps etc. My doc told me if it keeps progressing down the road when I get much older I'd have more difficulties but so far so good. The only problem with the meds are they can make you sleepy in the AM. Mysoline is used for seizures and has phenobarbitol in it which is habit forming I think but, hey it works. My blood pressure problems cause me more grief than anything else...I wish they had a cure for that as well other than medication, I'd go for that one for sure!

Hi Katherine, Hi I'm not sure of the correlation of dysautonomia and ET but I have had blood pressure problems alot longer than ET. As far as I have researched on ET, there is a specific gene that they have found for this. The best place to research on the subject is www.essentialtremor.org or wemove.org They both have the most information I've found as well as finding a doctor for diagnosis. My problem presented itself quite out of the blue as well, (at least it seemed that way to me) but it started as a very slight tremor in the movement of my hand and I kept dropping things such as the phone etc. Then as it progressed into the rest of my body, it caused a gait problem and balance problem. that's when I really got scared and finally sought real treatment for it, after being tested for MS etc...which came out negative. Mysoline is the drug of choice for this problem and works pretty well. The problem is based in the brain stem from what i've been told by neurologist but feels like it's in the other parts of the body. very strange! I had a EMG by a neurologist to find the type of tremor (each tremor type has a different frequency of tremor) so that tells them what's going on. A very painful procedure but i could actually see and hear the tremor while testing. Also alcohol usually stops the tremor, not that I would recommend that for an everyday treatment plan. It will also get worse if a person is nervous or stressed. It's not something that will hurt you like other diseases but it can be a problem in the functioning dept for alot of people and can be embarrassing when eating. My mother didn't display this problem until she was in her elderly years as well but I was about 35 when I first noticed problems and my daughter was about 20. It took about 10 years to progress for me and as long as I take my meds for it...not much of a problem for me although there are people who don't respond to medication and have to have surgery for this. So I consider myself very lucky. Good luck and keep me posted.

Hi Katherine, Essential Tremor is noticed upon movement. Like when someone is eating or reaching for something although your hands or legs/feet etc will also tremor when moved into a certain pivot point. Such as when you rotate your hand at the wrist at a certain position. It can effect the head/neck area which is the most common site and also can effect the hands/arms/shoulders, spine area (torso), hips and legs, ankles/feet. It can also effect the tongue and vocal cord as well. I have had essential tremor for close to 10 years now, starting out slowly and in my dominant hand and then progressed and moved to effect the most of my body over tme. This doesn't usually happen to most people but I just got lucky I guess. I take a certain medication to stop the tremor or slow it down so you can do things again without the tremor. If can effect someones eating or writing or gait and cause balance problems. It also will call what someone called an internal tremor feeling in the legs and spine. ET is genetic and runs true in the family. My mother had it, I have it and now my oldest daughter displays the symptoms. Each generation usually gets the signs of ET at a younger age each generation with some people getting this problem even as a teenager. If this is what you have, there are meds out there to help. I am an artist, so this tremor was greatly effecting my art to the point of not being able to hold a pen/brush properly but meds helped greatly. Also ET will get worse at times of illness or lack of sleep overexcertion etc. Hopes this helps let me know if you have any more questions Good luck

hi sounds like essential tremor. Get a second opinion. Essential tremor when effecting the neck area cause the head to shake in a yes-yes or no-no fashion. also ES can effect the other areas of the body and progress with time to get worse. The problem is based in the brain stem. good luck

Hi, If your daughter has low bp, has she tried midodrine yet? It seems to help us quite abit and along with increased salt. We notice a big difference when we take it as oppose to when we don't.

Hi, I don't know about anyone else but it usually takes me almost 2 days to recoop for 1 day of excertion, depending on what you are doing. Especially if you are pushing yourself beyond the limit. That could mean just shopping or running errands regular stuff that every one normal does and doesn't give it a second thought. Not to mention I always have to try to do any activity in the afternoon or evening when I have more energy. Even when you are doing something you enjoy it can zap the energy out of you afterwards. Good luck. I think what you are feeling is a pretty normal response for dysautonomia from what we experience and from what I've read so far, not sure on the reason why though.

Depending on the physicians office, if you have them sent to another doctor you shouldn't be required to pay anything but you should know that your new physician also will not give you a copy of the medical records that are from the first doctor, they will probably tell you that you have to get a copy directly from the first physicians office. I would speak with the office manager about the cost of your records and see if they can give you some kind of break since there will be so many. Tell them that you just don't have this kind of money for copies and that they are your records, you'll be happy to pay a copy fee but that they should not be making a profit from the copying since you've already paid the physician for his services. The recording of history & physicals are considered part of the services and copies do not run 1.oo a page. Good luck

Hi Best of luck in the storm. make sure you have lots of bottled water available, flashlight w/ extra batterys, jar candles & matches, food such as peanut butter etc. I would probably also have a cooler handy and tons of ice for it to put some food into incase the power goes out so you don't have to keep opening your fridge. that way maybe you won't lose food if the power goes out for a short time. I saw some people buying small generators etc to use on the news. Good luck and be safe.

Hi Just read your post. If you need a good bp machine, walmarts sells a wrist band type bp machine that actually keeps numerous bp readings and heart rate readings in memory. That way you can show the physician what the readings are when this is occuring to you throughout your day along with your diary of symptoms. Have you had a TTT done yet? That should show if you have a autonomic problem. Good luck and best wishes.

yes, I also experience terrible problems shortly after eating the first meal of the day especially. Mornings are always hardest for me. Blood pressure is at it's lowest in the AM and then if you eat something with alot of carbs or sugar, it causes extra digestion to occur which requires more blood in the gut to digest. In some people this can also cause a drop in blood sugar as well in carb sensitive people like me, it will raise your blood sugar then drop it again soon after (reactive hypogycemia) so along with the blood pressure being lowered at the same time, it can make you feel really crappy with increased tachycardia, brain fog, extreme fatigue and breathlessness making it hard to function until things levels out again usually about after lunchtime. Check with your doc first, but my doc had me try to eat protein only (for breakfast only), no carbs, no sugar what so ever, even juice was out in the morning to see if it made a difference. it made a big difference on how I felt, although it didn't take it totally away. the severity of it was improved about 50%. Although, it's a hard thing to do because I'm a BiG carb eater, especially potatoes, breads and LUV juice in the morning. I make sure I take my midodrine just before eating to help things and then eat salty pretzels with alot of fluids. Good luck and know your not alone. Personally, I never do anything physical or anything that requires alot of mental decisions in the AM, I do alot of my things at night when I feel better and have more energy. Best wishes to you