bamagirl

Thanks, Gena. Wow! Sounds like we are alot alike!! I just wish we could figure out what is going on w/ us!! I always get these episodes at nighttime, usually right after I have fallen asleep or around 2am. It's never during the day. That has always made me so confused. I would love to talk to you more. Please e-mail me privately anytime. Let me know if you want to talk further and I will give you my email address. Take care, Amber

Here is a typical surge for me. Please anyone let me know if you get this as well. My vision will start to get very sensitive I have an epidose of "sleep paralysis". I will start to tingle in my hands I will itch, mostly on my hands and face. I get this "creepy crawley" feeling in my arms,legs, and scalp. I get short of breath, not gasping, just like I am taking in air but it's not enough. I get the "heebie jeebies" My heart starts racing , my bp stays the same usually around 100/65. HR goes up to about 130-150. After a minute or two the tachy passes. I start shaking and my teeth chatter but I am not cold. I feel wiped out and my muscles feel like jello. I get a terrible headache. I get nauseous. The rest of the night I have insomnia, like I have had 100 cups of coffee. I have nightmares and muscle twitching. My skin will burn all over and I get gooseflesh. My heart rate will run around 110 while lying down and sitting for about 2 weeks. My bp will run about 76/47 for about 2 weeks. I am totally wiped out and bedridden for several days. Eventually, this passes and I can function about 60% which is as good as it gets for me these days. Am I a freak?!!! About a month later, I have another spell and here we go again!!

Hey guys, I am going to call Dr. Low tomorrow and try to get a final answer on this new "miracle drug" he is supposedly working on. I am a current office patient of his and also a research patient as well and get letters all the time from him asking me questions and wanting me to try new drug studies. As for the mestinon, it did absolutely nothing for me. I hope I don't burst any bubbles, I just want to offer real hope, not false ones. I try to stay positive and realistic as well. Anyway, I will call his office in the morning and see if I can get a call back. I will post when I get some info. It may be a few days, he travels out of the country a lot because he is from Asia somewhere and his family still lives out there. I hope I have good news for us all soon!! Take care everyone- Bamagirl

Hi there, I don't personally know anything about phlebitis, but I was wondering if you have had an ANA(antinuclear antibody antigen) test done? If so, and it has came back positive, (i.e, speckled or homogenous pattern at 1:320 0r 1:160) please reply and let me know. I may have some interesting data for you to ask your MS doctor about. Sorry I can't be more helpful about your other problem. Bamagirl

Sounds great to me, count me in!! I'll do my best to get there. I think it's great that we all live in a fairly close area. I would love to talk to each and every one of you- as I feel I already know some of you in a way. Atlanta is a good meeting place for me. Let me know if I can do anything to help out. Sorry, I don't know anybody or have any ties in ATL for meeting purposes. I'm excited!!!! Bamagirl

Hi Dizzy Dame, Sorry you are having such a hard time. I have been there SOOOO many times as well so I can relate like you wouldn't believe!! I live near Atlanta, GA & know lots of doctors here at Emory, Piedmont & then some. Just let me know what kind of doctor you are looking for, EP, Cardiologist, Neurologist, etc... and I will help you out in any way I can. I would definitely get to an internest or GP and immediately get a blood test for heavy metals and toxins. All these substances have neuro-toxins on the ANS and CNS. I had mine done and it was negative, but it's better to be safe than sorry. Also, mercury fillings can do ANS damage. If that is the case with you, it will come across in your heavy metals blood screening. Take care and know that you have a friend in GA that will support you & get you through this tough time. Take care & don't give up bamagirl

I too, felt like my POTS wasn't all that was going on. I had more than bad spells while standing. I was having severe neurological symptoms- burning skin, nausea, sesitivity to sound & light, horrible fatigue, muscle twitching, audio hallucinations, loss of appetite, tingling and falling alseep hands & feet, migraines every day, etc... I went from working full time(I'm an accountant) to WHAM, bedridden. Dr. Low at Mayo, MN was even puzzled when I saw him in 03 that I couldn't hold my head up in his office because I was so weak. He told me most people with POTS aren't so bad that they can't work. WORK?! I couldn't even keep my eyes open & look at this man while he was talking to me. He also couldn't tell me WHY I had dysautonomia. He just said it was "idiopathic", meaning from an unknown origin. I knew then something else was going on. I got in pretty quick at Jemsek in February this year, I was lucky. I tested positive for lyme, bartonella & babesia. Two out of three urine samples also came back positive for lyme bacteria die off a week after I began my antibiotics, so there is no question that I have lyme. I am on my 4th month of IV antibiotics and still nowhere near where I need to be. I have had lyme for about 15 years and it will take years of treatment for me to show any improvement. Jemsek has said that they will not stop treating me until I show improvement, even if it means I am on the IV's for a year or longer!! I will do whatever it takes to get my life back. Guys, I wish I could type more, I just came back from Jemsek today and have been in the car for 12 hours so I am going to need a couple of days to recover. Anyone wants to call me it is much easier for me to talk than type because I may not get on the computer for a week or longer if I am in a flare. I am 32 years old and live near Atlanta, Georgia. I was born & raised in Alabama so that's why I am "bamagirl". I want to talk to each of you. I think we really need to stick together and see what works for us and gain that knowledge. I believe more and more people will see that they have underlying lyme causing their POTS. Take care guys and stay positive

Hi there. I have lyme & POTS too and am on IV antibiotics. I truly believe that lyme has caused my dysautonomia. My lyme went untreated for about 15 years and I am now in the chronic stage. I have a big problem with nausea and burning skin, tingling numbness all that stuff. www.lymenet.org is the best web site for us "lymies". Please feel free to contact me at mesmerize731@netzero.com if you want to chat further. I have been to Vanderbilt, Mayo in MN (Dr. Low) & Jacksonville (Dr. Cheshire) and now Jemsek Clinic in NC for my lyme treatment. I have really gone everywhere I felt help would be accomplished. Hang in there and I look forward to hearing from you!!! Amber

Hi guys, I just wondered if any of you out there every get episodes where your face, on one side or the other, tingles or goes numb? Also I often get chills, gooseflesh and sometimes my teeth will actually chatter after a tachy epidose. It scares my husband because I will be shaking so bad and my teeth will chatter and he will ask if I am cold and I will say "no, I just can't stop shaking and chattering". These things are really weird. Today I felt like I was losing my hearing in my left ear. It has happened before & it gets better after a few days? Thanks for your replies. Knowing this is something that just happens sometimes with this disorder brings me comfort. Take care everyone

There is a dr Blair Grubb is Toledo, OH who is one of the best autonomic disorder sprecialists in the country. That is who I suggest. Bamagirl

Thanks for the info!!! I really appreciate all the replies!!! Bamagirl

Thanks, Katherine- It seems as if the burning/tingling is more frequent than ever. What helps you guys with this painful symptom? bamagirl

I just got approved for social security disability. It took me two and a half years of fighting to get it. After 2 denials, I hired a lawyer and got it ruled on without a hearing. The problem is, I was only approved for one year and then I have to have my case reviewed again!!! Has anyone else out there had this happen & if so, how hard is it to keep getting approved year after year. I am 32 years old, an accountant and worked steadily since I was 15 up until 5/03 when I crashed and couldn't go back to work. I was hoping I wouldn't have to be reveiwed again for another 3 to 7 years!!!

I know lots of you guys have posted that you have nerve damage. I was wondering, how did you find that out? I have had nerve conduction/emg studies and autonomic reflex testing and all were normal. I still have itching, burning in my arms and legs almost every day. Also, anyone have normal never testing and still have symptoms of nerve pain and if so, how do you deal with it on a regular basis. Thanks for your replies-

Thanks for all the replies. I have SOOOO many symptoms, I wonder what to do. I have tried all of the drugs that are supposed to help, but I wind up not feeling better and just deal. Last night my bp was 86/57 and I felt terrible. My pulse was 63. I seem to feel worse when my pulse is low. Anyway I went to bed and woke up as soon as I dozed off because I was itching, and my arms and back were burning and stinging. I also felt like I had been given adrenaline and my mind was racing. I'm not stressed (except for feeling terrible every day!). I just don't know when to say, OK, it's all related to the POTS or try to seek help.

Thanks for the reply sunshine Sorry you have the nausea every day as well. Any doc give you a reason for the nausea? It seems there should be a physical reason for it. I know there can be some delayed gastric emptying problems but I don't have that. I get the nausea every morning & it goes away as soon as I get up & move around. Also, I seem to itch more when I am symptomatic. Is this also a common thread in POTS? By the way, glad to be here!! It's nice to talk with folks who understand!!

I have developed morning nausea over the last few months. I have had every test there is and my gallbladder removed last year. I have no uterus, so I know I'm not pregnant. I have had POTS for about 8 years and it seems I get a new symptom just when I thought I had them all. Mostly feeling drunk, nausea and burning & stinging pain in my arms and legs. I feel like a freak among freaks!!

Is POTS and dysautonomia something that will happen all day every day? I mean do most of you guys get tachy every time you stand or does it come and go? I will be ok for a few weeks and then have a strange spell, mostly at night, like I will get a strange warm rush over my body, then both of my arms will start to tingle, then my heart rate will go up to about 150 for about 2 mins, then I get nauseous, then it will go away and I will be tachy and feel terrible for about a week. I will have migraines, be extrememly fatigued, feel drunk, and my skin will burn. Then after a few days I will slowly get back to ok and I am not tachy again until my next "spell". Anybody else get these spells or is it every day all day? Thanks guys!!!

I have been diagnosed with POTS, Mast cell activation disorder AND lyme disease, (in that order). Anyone else out there have all three too?