ajw4790

Hi, I just tried to do a quick search, but did not come up with much. Here is a link to a ppt that has an image of a child with torticollis (which involves the SCM) and the bulge it can create on ones neck. I realize it is a child, but I did not see much on this in adults. But, I figured if the location was about the same that it may help to narrow things down. I would seek medical attention for it on Monday. If none of your drs. are helpful you may want to check with an ER. It is something that can happen after trauma (whiplash etc), so the ER drs. MAY actually be semi familiar with what that would look like... Just my personal thoughts... I wish you the best at figuring out this latest puzzle! Link: (takes a while to load) http://www.oucom.ohiou.edu/dbms-witmer/Dow...tho-anatomy.pdf

Maxine, Hi! Sounds like you are going through an awful lot again. I wish things would calm down some for you! If you can post a picture that might be helpful. (not sure how easy it is to see) From what you described I was even wondering if it was your SCM (sternocleidomastoid muscle)? It almost seems like a while ago someone posted on here about a semi-similar problem and it was something about how their SCM some how tore and was causing a bulge in the neck. I am almost thinking it was someone like Williows???, but I am not sure??? If it is something like that it could cause further instability, so be careful!!! If it something like this it is likely EDS related,, and none EDS drs. may just not "get it" or understand. A PT also may be able to help if it is a muscular issue. I hope you are able to figure it out soon!!!

Jennifer, I had wondered about something like that! I have had this on and off whenever I encounter something that I seem strongly reactive to for years, probably well back into high school. I JUST remembered I get the SAME thing whenever I am trying to use electrodes, tape, adhesives for a long time! For school we had to wrap ankles etc. and they wanted me to use that kind of tape... I turned red, somewhat faint/dizzy, tachy, ITCHY, and it caused bone pain as well. I HAVE to remember to mention this to the allergist!!! It was funny... To try and learn taping techniques the prof. wanted to to try and do it wearing gloves! Try taping someone with gloves on! Especially if they are like two sizes too big! Not fun! Try explaining to your prof. you are allergic to the tape. Then, he mentioned the gloves and I said I am allergic to latex too! He wasn't too happy or taking no for an answer. He found a pair of sterile gloves that are wrapped like they use in surgery that was hypoallergenic. But, they were HUGE!!! That day was just awful! I felt like crud, and of course no one understood and thought I was being VERY weird and making something out of nothing... URRRGGGHHH!!! Oh, well... this just got me thinking! Thanks!!!

Hi, I was told by a ANS specialist to try and tilt the head of my bed 6 to 10 inches. I have been trying to figure out how to logistically accomplish this with what I have bed wise. I tried 2-3 inches before for a couple of months and thought it made me feel worse. He insisted though that some patients he has had have shown great symptom improvement after doing this. So, I am still open to trying... So, I was wondering if ANYONE here has had any SUCCESS with tilting the head of your bed with decreasing your symptoms???? I know this has been discussed a lot before, but I do not remember much of any positive stories about doing this... I only can recall stories of people trying and having negative results. Please let me know of any positive results you may have had from this, and how far tilted, did you slowly increase to a higher height or just put it up high at the beginning? It has been suggested that this may only work with those that are supine hypertensive, which I am not. Anyone else have ideas behind this???? For those not as familiar with this topic the idea behind tilting the head of the bed is to cause pooling in lower extremities to decrease the amount of fluid loss through the kidneys overnight. It is somewhat counterintutive to cause the pooling, but it is to keep fluid volume up.

Hi, I was wondering if anyone else has experienced THROBBING bone pain when you have an exacerbation of symptoms? Especially if it is set off by something in particular like an allergen??? I have had this before and just had it happen again, where my left arm (elbow, forearm, and thumb) are throbbing after exposure to an allergen. Before it has been with things like cashmere (allergic to), new clothes (didn't wash beforehand, and had whatever they spray on them to keep them clean and insects away), and yesterday was I think due to being exposed to a LOT of pollen that I do react to in a short period of time. I also got burning itchy eyes, sneezed, headache, palpitations, and the throbbing pain which just made me feel awful!!! After I am away for the allergen for a couple of hours everything goes back to normal. The pain just goes away... WEIRD!!! Anyone else get this??? Thanks!!!

Hi, Answer: Not incredibly well, but it is hard, some could care less what other drs think/do and others are all about working together. Some just don't understand POTS etc., so I get outsourced to their specialty and they have no idea. Best thing is to get copies of all records that take place outside your normal network of drs. and take it with you to every appmt. So, I take everything from Cleveland Clinic and Toledo to all appmts. if they are interested they look at them, and if not they don't. Overall there is decent communication due to most are on the same computer system, and they just pull everything up. Otherwise I have records with me. I can only think of two of my drs. that sound like they have talked to each other about me. Otherwise, it is all from records (letters) and what I tell them. I don't have a good answer I guess, and recently I have somewhat let down my guard or whatever with the assumption that I will have to move soon anyways and have all new drs. So I don't over exert myself bringing everyone up to speed, except on pertinent matters. If they disagree, then you have to kind of look at it like, can I successfully see both? Do I feel that one listened and looked for a reasonable answer better than the other? Could I choose between them? Choose the one you believe is most correct (on the right path towards healing), and seek help from them. Also, it is just a fact that some disciplines or factions of drs DO NOT agree and WILL NEVER agree. This is a version of office politics... When I come across this, I tend to avoid whatever topic that dr. does not agree with, and seek help with other things. If five of your drs. are thinking one way, and it is just against the way one dr was taught and they are not budging, you have to go with the other five, and just nodd your head to the other dr. while actually dealing with it with your other drs. Doesn't mean that the old school dr doesn't know their stuff in another specialty. So, I don't dump them right away. I have a PCP, allergist, endo, cardio (Toledo), 4 neuros (1 in Cleveland), sleep dr, derm, and rhuem. All but two are in same network. Thank goodness!!! I think I am done rambling...

Hi! I am so glad to hear you made it back, and it sounds like everything went well!!! Congrats!!! It took me longer than that to get my results, but I think you may have had less or slightly different testing, so that may not be the case. I think that he was also out of the office some, which delayed things. PM me if you have any questions! I hope that when the results come back that they will have some answers for you!

Hi, I'll PM you.

Hi, I have had similar symptoms before. Primarily it was in high school when I had this problem (part of the time I did have upper resp. infection with a lot of drainage that caused a lot of the issue). I would be nausous all the time for weeks, unable to eat more than a bite here and there, then would have a day everyonce and a while that I would end up spending the whole day on the disgusting high school bathroom floor. Teachers thought I was making it up, to anxious etc... Looking back I think it was a combo of the resp. infection, appendectomy freshman year (this vomiting was more junior/senior yr), and it was always worse in the rooms that were too HOT! I had a period in grad school again when my POTS was undiagnosed and not treated that I would get dry heaves any time I was in a classroom etc. that was too warm. One in particular was awful, I missed almost every class running back and forth to the bathroom. It was like a sauna! Something I also found that was agravating this symptoms for me was hot drinks (in particular hot tea). Hot drinks set off a internal thermoregulation nightmare and make me super nausous, but don't normally vomit. And it would last all day even after just a few sips. Cymbalta has recently lessened this a lot for me, but it is still there. Also, you may want to check out Cyclical Vomiting Syndrome. http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/index.htm

Glad you found something that works! I am one who has the opposite problem of needing to weigh less than I do... I eat a lot of almonds, some cheese, small amounts of fruit (applesauce etc) like you mentioned. I have to watch the reactive hypoglycemia too. I wonder if part of why the carbs work well for you is that you are male? And are you younger too? I also don't know how you are doing that kind of exercise??? Even on my best day I would not be able to do anything similiar.

Hi! I wasn't sure from reading if this applies or not, and if those who experience this are aware of Cyclical Vomiting Syndrome and are being treated for it. But, thought it might be ggod to post a link... http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/index.htm

Hi! Glad you saw positive results. I am going to start it soon myself. I have my fingers and toes crossed!

Hi, I am incredibly heat intolerant. I too have had times where it seems too much sun, for whatever reason (heat or not) makes me feel quite sick. I actually seem to get "sun stroke" or whatever the right term is quite easily. Not sure if it is the same reaction with us, but only magnified compared to "normal" people? But, as an idea... do you think getting the plastic that you can put on your car windows to tint them would help? If it happens a lot in the car dark tinted windows might be an idea.

Hi, Didn't you just start a beta blocker too? How come you just changed/started so many meds? Most of us are told to start one new med at a time and wait at least a month in most cases to start a new one! This is VERY important, especially in patients like us! Make sure to talk this over with your dr. and watch starting this much all together. You are more apt to put your self in a POTS hole than find a med(s) that work for you. This isn't just you, but have noticed a few people doing this recently! Please make sure to talk this over with your drs. and try/start new meds slowly!!!

Hi, I have bad hip and low back pain that sometimes results in sciatica. But, it is probably rates only like 150th on my symptom list. So, not real common with me...

postprandial blood pooling

Hi, I don't have experience yet with it. But, I have seen multiple times since I have been on the board of people complaining of the same stomach issues that come with Mestinon. I think it is one of the common unfortunate side effects. But, for most I think it is one that gets better as your body adjusts. Your body does not adjust overnight to most meds it takes time... days, weeks... Wouldn't worry to much or less it gets to the point that you are getting no nutrition from what you eat, are dehydrated, and/or you see no improvement over a matter a week or so.

Hi! I know you are looking for a response, but I am not really sure what your question is??? You might find that you get more responses if you clearly state your question, and then describe what it is that you are talking about. Like what kind of pain and where? Are you bloated all the time? Does something trigger it? Is it blood pooling? If I remember right you are male??? So, not female related bloating??? It is hard to figure out what you are talking about with so few words, and I wasn't even sure what you meant by "these"??? If bloating is a problem you could also use the search tool at the bottom of the page to look up old posts. Sorry I can't be of much help, but I am not sure what you are asking???

Hi, I have neuropathy pain, but not the kind you describe. But, I was wondering if you had tried Cymbalta? That can help some with nerve pain. I have been trying to think of other ideas, but you mentioned most I had within your posts, and otherwise I am drawing a blank... Because what you describe sounds like RSD (I know techincally it isn't) but, I am wondering what else people with Reflex Sympathetic Dystrophy use that may help you? I know they often go to pain clinics and use a variety of treatments. They use anything from meds, relaxation/meditation techniques, to easten medicine (like acupuncture). I wonder if this route would help you in any way? Hope that you are able to find something to help this summer! I am already dreading summer!

Oh, my!!! Jeez! I will be thinking and sending positive thoughts to you and your family! That is way to much to deal with all at once! I wouldn't even know what to do. And I don't have kids, hubby relying on me etc... Hope things take a turn for the much BETTER very SOON!!! Take care of yourself!

Howdy! I don't come over here very often, but I wandered over here and saw your 'blog roll'. I just started a blog this week. I don't know much about blogging etc... but, I felt hey everyone else has one so why not? I will probably just end up boring myself, but hey I tried! Mine is new, so it isn't super exciting yet, but here is the link... http://invisiblezebra.blogspot.com/

Hi, The atenolol has little affect on me. I could probably not take it. My drs. don't believe me. I don't tend to have low BP anymore or less I have started new med or something that has me all messed up. I tend to pretty much run around 120/80. The other day when I felt bad it did go a little high for me... 136/82 or something... Not really high. As far as the CFS, I really don't have any idea. From my formal education and drs. I have dealt with they all pretty much don't recognize it as a diagnosis... So, my point of view is skewed...

Hi, Sorry things have gotten rough lately. I am a lot like how you describe in sometimes you just don't feel like doing anything. You start something, but it is boring or annoying, so I stop. I have a short attention span and frustration limit with things. Like if I am on the computer and it is acting up, I would rather leave it alone than figure out why it keeps being abnoxious... Or just that I don't have the energy to do things. Like I start a task and realize, wow! I don't have the focus, brain power, or energy to hold my arm up like that today. So, what do I do?... Continue to try and figure out the puzzle that is me... Dr. appmts., testing, med trials, figuring out/possibly doing tilting the head of the bed, shopping for and trying compression, and everyday survival things (drinking, eating, grooming, sleeping) pretty much take everything else out of me. I try to do things in small chunks like cooking or cleaning. It can be a wonderful day if I can just have the energy to fill up my water pitchers at the kitchen sink! When I feel decent I like to go shopping (groceries, necessities, library etc). For fun things to do in spare time... I spend a lot of time on the computer (searches, work, writing etc.), I watch too much TV (I also fell in love with tv series on dvd! Good to be able to pop in and watch as do other small tasks. I especially like comedies.) I also like to when I am able to get my self to and from the library, check out current movies on DVD, and you can get 10 at a time. It is really nice when having a bad time or new med trial and unable to drive self anywhere. Shopping in store (when can) and online. Music. Started writing and blogging. Reading if I have the concentration. Not sure... I am pretty boring. But, I don't have energy for much else. I hope that your classes go well!!! Congrats on signing up!!!

Hi! I am glad you found it helped you out! I hope that it continues to be helpful and may help drs. figure out what all is going on!!!

Hi, I second what Flop said. Also, I know that there are people on here with a CFS diagnosis and others that probably have it, but their drs. don't believe in it as a diagnosis (like mine). But, I don't think that the blood pressure drop is associated as much with CFS as dysautonomia (NCS, OH, PH) like Flop said. Not sure if that helps? I am a wee bit foggy brained!