Gwem

hi, I just had an EMG done, because i've been getting such sever leg pain in my legs from the knee down, it comes and goes though and particularl hits me at the same time of the month, it's werid like my symptoms come in cycles. I haven't gotten the results back yet since i just had it done wednesday.

Last night I woke up from feeling like I couldn't breathe. I have had this happen to me before but never as bad as last night. Apparently I woke up screaming and gasping for air becasue my dad flew into the room becasue he thought that someone had come into the house! It scared the daylights out of me though, and my dad obviously! I called my doctor today and he can't make anything of it. The entire day I have felt horrible and completely exhausted and have had the "out of breath feeling." It also get's more intesnse when eating like my body has hardly enough energy to breath, even though I am breathing taking a deep breath takes a lot.

it looks puffy around my eyelids and lower lip sometimes. Not necessearily feeling like fluid but pressure underneath the skin....it's noticable within 10 minutes ofeating. Doesnt always occur though, and i can't determine if it's a particular type of food allergy either. very odd.

I'm noticing a new thing from the past few weeks....about half way through every meal my face feels like it is getting puffy...my parents noticed that i get swelling on the left or right side of my face and around the eyelids as well. Has anyone experienced this? THe only thing my doctors have said is that it's a neurological responce, that when i eat the nerves in my face are stimulated...very strange and freaky. let me know if you've ever experinced something simliar as well. thanks

thank you so much, your comments relived my worry's a bit of starting a new medication. I hope that I have a positive result from this medication like many of you have and again if you have any other comments or info about it or any other med let me know. thanks again :-)

My neurologist wants me to start taking Neurontin, he said it should help to suppress some of my autonomic symptoms from dysautonomia, does anyone know if it works or not? And if there are any negative bad side effects from it? any information about the medication would be very helpful. I'm supposed to start the medication tomorrow and just found out about it today. Please let me know anything you know at all about it. Thank you so much!

this is going to sound like i'm a porphyria advocate, but seriously speaking...has your husband been tested for porphyria...it is extreamly difficult to diagnose, however there is a relation to blood sugar and carbohydrates...i suggest you read up on it a bit because the symptoms you listed are a lot like those of AIP (Acute Intermittent porphyria) as well. also look at the general discussion under Porphyria for the other links. i hope this is helpful. also, look up the medication your husband reacted too and check to see if it's on one of th "unsafes" for those with porphyria. i know this is just a far shot but it would be helpful to rule it in or out of his diagnosis. www.americanporphyriafoundation.com

COMPLETELY by accident, I went to a rheumotolgist because my electrophysiologist recommended i do so after i had the tilt table test and it was discovered i had dysautonomia. Ironically enough this rheumotologist thought it was "all in my head" even though i had written proof of dysautonomia. so he said he would run a few other tests and said that something called porphyria sounds kinda like the symptoms i got but, since he thought it was all in my head and compleely emotional...he doubted he'd find anything. HOWEVER, loand behold the test came back through the roof positive and thus i had to be retested.....i went to another doctor, a hemotologist who re-tested me and the numbers came up again! i then went to another hemotolgist that specializes in porphyria and he read the numbers and said that i definatly have an Acute form of porphyria and now it has to be determined which form. Thus explaining what triggered my vagus nerve to cause my dysautonomic symptoms...which if you read up on Actue porphyria affect the autonomic nervous system which are the exact things i have been complaining of. PLUS the medications that i've tried i've gotten WORSE not any better on....such as antispasmotics which people with porphyria CANNOT have! it explains why all the meds didn't work and made me worse! i now know which meds i can't have..the other thing is that i was on a Scopolamine patch prior to this diagnosis...it helped me a lot however whenever i ate my face would start to swell...an autonomic responce, well....this hemotologist looked up the drug on the list of unsafe drugs for poprhyria patients and it was listed as one of them, so it explained the "bizzar" autonomic respone i was getting.

Geneva, Here are some websites...Apparently I have either Heredetary or Variegate porphyria...both of which are Acute Porphyria forms. They effect the nervous system... here are some sites i found: www.porphyriafoundation.com http://www.porphyria-europe.com/EN/00-Info...question-02.asp

hi, I just wanted to let everyone know the latest with my crazy health and dysautonomia. I have been tested for Porphyria TWICE...and have been to two seperate hemotologist and spoken with two seperate Porphyria specialists. Today it has been conculuded that i have a form of porphyria. Either Hereditary Porphyria or Variagate. I have to wait to have yet another test done to conclude which I do have. Has anyone else been diagnosed with porphyria or has anyone had the testing done? They said that it happens a lot in women and can be triggered by changes in estrogen levels. The hemotologist that diagnosed me today also said that I have to be careful of high fat and high concentrated sweets. He also said that there are TONS of medications that those with porphyria are allergic too...ESPCIALLY ANTI SPASMOTICS!! used to treat suspected Irritable Bowel Syndrom...i had been on three seperate ones and it made my symptoms (both gastrointestinal and neurological) MUCH worse... if anyone has had similar situations i suggest that you get tested and at least rule it in or out...I still have a long road to recovery and treatment I'm still in a daze about all this information i was thrown today. Any insight on similar situations with anyone would be great. And i hope that by me telling everyone that I do indeed have a form of porphyria...perhaps some of us can get some answers as to what triggered the dysautonomia symptoms.

i wanted to know if anyone else has experienced this... Starting thursday my legs starting to bother me...more my left than my right....Thursday night it kept me up all night...my jaw hurt..my left side of my head and my wrists ESPECIALLY my left leg from the knee down into my foot and ankle....it was uncomfortable and wouldnt get comfortable and was borderline painful..it finally went away. However after i had breakfast in the morning yesterday that pain came back and my stomache hurt and my intestines...my legs hurt still more the left than the right leg...the musclees hurt but also the bones...that's how i described it...almost like they wre from an allergic reactoini but it wasn't...no swellng or rashes, no new medicatons nothing of the such. It was so bad and hurt my head and everything that i went to sleep for 3 hours...I finally was able to get up later and the pain seemed better and to go away....I started to eat dinner and within 10 minutes the pain started to come back....i called my doctor and he toldl me to take aleve every 6 hours...i also called the pharmacy...the pain lasted the whole night and was agrivated every time i ate...I have to gain some weight and i had seen a nutritionist this past week. The only tinig different was that yesterday i started adding Go Lean Protein powder and soy protein powder to my breakfast shakes, however, i have been on a lactose free diet and have had soy for a year and as a baby, so i highly doubt this is the cause for this discomfort. Has anyone experienced tihs? i am completly miserable, i could at least walk around and do things and now i'm pretty much stranded to sitting or laying down. please any advice would help. My Rhumetologist had also mentioned that he got "fals postives" back on a tst for porphyria...i've already been diagnosed with dysautonomia but the doctors dobut i have porphyria...i'm scared and don't konw what to do..thank you.

I found out today that I tested positive for Porphyria...but my rhumatologist said that he has to run it by a porphyria specialist and said this could explain the GI problems i've had...which have been sever constipation and extremely slow motility and abdominal and intestinal pain. Has anyone been diagnosed with this? Does this run with dysautonomia? There are SO MANY different forms of it i have no idea which one i have becuase i wasn't told yet...any advice or info would be helpful. i've checked out http://www.porphyriafoundation.com/

I went to see yet another doctor today....an internist..and he suggested that I try Scopolamine it's originally a sea-sickness medication that is in the form of a patch that i am supposed to put on behind my ear..... he said this could help with my vaso-vagal responce which causes the dysautonomia symptoms i get......he said it could help to "calm them down" so that i will be able to eat and not have random episodes of vertigo and weakness and headache..has anyone been prescribed this before?? any insight would be helpful thank you!

My Neurolgoist said that it's possible that I may have to go on a medication to increase my blood pressure...he said that it could help with my GI and other autonomic nervous system disorders as well. They may put me on Florinef...my concern is that what if it turns to make my BP too high? has anyone had side effects with florinef or any other BP Increase med? any other meds tried that worked? any to stay clear of? any suggestions would be helpful or any advice thank you!

Hi "Very Blue," I just wanted to let you know that I'm 20 and I also have experienced an extreme drop in my blood pressure...it's gone as low as 70/60 and my heart rate has ranomdly plummeted into the 30's from the 60's. In general though, I have low BP, however....I have had heart monitor's, EKG's etc. and also recently had 2 tilt table tests..In my circumstance,( i don't know if this will ease your concern but i hope so!)the test results showed that what i have is Dysautonomia, in other words, my vagus nerve is causing the drop in heart rate and blood pressure...therefore i did not need a pace maker (which my cardiologist had thought i did need.) Since this is an autonomic nervous system disfunction my doctors now have to try to figure out a "cocktail" of different medications to help control the drops in BP and Heart rate, as well as figure out what will help the other symptoms i experience with my dysautonomia, GI problems, coldness, thyroid stuff etc. I hope that knowing there is another young adult out there going through the same kinda thing may help. feel free to e-mail me if you need to vent or chat about it. Also there is an organization that helped me a lot , which i would not have found had it not been for DINET the organization is called DYNA..it's for kids and young adults going through POTS, Dysautonomia type symtpoms. www.dynakids.org