wareagle

Hi all! Just wanted to ask about Midrodine. I'm currently on a small dose of Florinef..and see my doc. in a week. He has mentioned Midrodine before and I have a feeling he'll want to try me on it soon so I wanted to know about specific experiences with it. I remember Gena saying that they weren't prescribing it any longer in Birmingham, AL and that concerns me. Just wonder if it's "safe"? Thanks for any info. ya'll can give! Michele

Hey Mary..just wanted to let you know I'm in the same boat! Yes, I smoke..No, I'm not proud of it and wish to quit..just don't know how!! I can't take Wellbutrin..had a bad reaction. I worry about the patches and gums..will it effect my POTS? I also worry about my body's reaction to quitting. I know it's not a healthy habit but my body is used to it and I'm afraid quitting will send it in a tail spin..especially since it's so sensative now with the POTS. Think I'll ask my doc. I'd also appriciate any tips or info. other members can provide. My goal has always been to quit by the age of 30..I'm 28 1/2 now..not much time left!! Hang in there and good luck!! Michele

I first started with the hive about a 1 1/2 year ago..at the time I wasn't on any medications. I haven't changed detergents or anything like that. At first I thought it was my watch..but I haven't worn it in a long time and still get the hive. The only dietary thing that I could think of was Diet Coke. I started drinking it right before I became ill..I stopped about 5 months ago b/c of the sweetener in it..aspartame. Apparently, aspartame can cause a variety of symptoms including most of those experienced with POTS..and it would have explained the hive. Unfortunately I'm still getting the hive and still have POTS..so I don't think that's what it was..they say it usually takes about a month to detox from it and for me it's been a lot longer. My doctor did mention it could be viral..but trying to pin that down would be pretty much impossible. So..it remains a mystery!

Thanks for the info. Linda! Sorry your daughter is having problems with this! My "hive" goes away without any left over marks...I've also noticed one on my right leg from time to time. It's just really bizarre..I KNOW it has something to do with this illness..just not sure what. I plan on talking to my doc. again about it..probably one of those things we'll just never have an answer to. Oh, one more thought..if it's not bacterial or viral..could it be fungal in nature? Wishing you and your little one well..have a great Thanksgiving! Michele

Hello all! Just wanted to ask if anyone has had a simular experience. Since I became ill..actually right before I got ill..I started getting this re-occuring hive on the inside of my left wrist. At first I didn't pay attention..thought it was a bug bite. It does not appear to be allergy related..and it doesn't really follow a pattern of appearence. It does tend to pop up at leaste once a week..usually when I'm going to sleep or waking up. It's a little smaller than a dime and lasts for about an hour then disapears again. Doctors don't really have an answer..other than it's prob. not an allergy. It doesn't really bother me..just seems there must be a connection to my POTS onset..and ongoing illness. Oh, I have been tested for lyme disease..thought maybe it was a tic bite..but it's been neg. on several occasions. Any ideas would be appreciated...Wishing everyone a wonderful Thanksgiving!! Michele

Beverly--First, I want to thank you for being such a wonderful mom! I myself have moved back with my mother and words can't express how much her support and love mean to me..know that you are Nicole's angel! I have been on Clonodine for almost a month now..my doc. wanted to try it to "break up my sympathetic tone". I take 1/4 tab at bed time and have had no bad side effects thus far. It does make me a little groggy..don't know if I'll increase the dose or not. Most take it 2x's a day..but my doc says it's okay for me to just take it at night. Hope this helps!! Please give Nicole hugs..and yourself a pat on the back!! Michele

Congrats on finishing Comps Nina!! I had to go through them in grad. school..it was such a relief when they were OVER!! Hope you're body can "settle" down a bit now! Wishing you cramp, bloat, and pain free days!!

Let's see..how do I explain this? For the past year I've been getting swelling and mild pain on my left side..just above my hip. It curves around to my back and abdomin..but it's not a "deep" pain..almost feels like muscular in nature? When I lay down it sometimes feels like something is "poking" out..puts pressure on my back and hip. When I palpatate it..I don't feel anything. I've had two x-rays and the docs. haven't seen concerned. It tends to come and go..when it "flares" up it's really irritating..kinda' hot and itchy. Could it be an irritated nerve or something? I tend to lean toward that side when I'm propped up. I intend to ask my new doc. about it in Dec...but just wanted to know it ya'll had simular experiences or any ideas. Thanks for listening! Oh, and for all you SEC fans...WAR EAGLE!!

Just wanted to add my two cents! So sorry this happened to you..it's amazing to me how ignorant and rude people can be. The sad thing is this person probably thought she was being "helpful". I agree with possibly going with the leagal angle..and speaking to reps. at your school. Unfortunatly, things like this tend to get passed around, swept under the rug..ect. My suggestion would be take your story to the newspaper..either your city or school. I believe they would be interested and your experience would reach a lot more people. Good luck..give um' heck!

Hey Radha..I'm a Speech Path. and work with swallowing issues. Have some suggestions. First..eat slowly and take small bites..try 1/2 teaspoon at a time. Alternate bites of food with sips of liquid..(ie. couple bites and sip..couple bites sip). If you feel like residue is still present clear your throat and swallow again. After a meal sit up at least 30 min. as close to 90 degrees as possible. If you cont. to have problems or it gets worse (you have choaking..coughing following swallow) ask your doctor to order a Modified Barium Swallow Study. The MBS is done by a radiologist and Speech Path. and is non-invasive and will show exactly what's going on!! I hope this helps!! It's been so long since I've been able to help people with these problems!!

Hey Friday..sorry to hear about all you are going through..sounds a lot like me!! My suggestion would be go ahead and have the TTT...it's not "horrible"..I'm not sure why your doc. keeps saying that. I read in a previous post that you've had blood work done..have you been tested for EBV, CMV, and Lyme Disease? Have you had an ANA and Sed rate taken? I know it's difficult..before I was diagnosed I had so many questions..and fears. Even now it's not easy..I've just begun treatment and worry about my future. I do take comfort in the stories of others here and knowing that there is a life after POTS!! I would try to find a doc in your area who is a specialist..if not..are you able to go to a clinic..Mayo..Clevland..Houston...I went to mayo and liked it b/c they did all the damb tests in one place in about a week! I hope that things start looking up for you..and me..and everyone here! Keep your chin up and know that you are NOT alone!

Hello All! I live in Orange Beach, AL..we actually rode out the storm here at a resort on the beach. Fortunately we are all okay and our home is actually still here..we were blessed. There is alot of devestation..Opus my thoughts are with you and your family. It has been frusterating for me b/c I'm unable to help more with the clean up..etc. How did other fair in the P-cola area..I know you guys got hit hard too! Just keep your chins up..and be thankful we all made it through with our lives! Things will get better!

I can't sleep and my body is going a mile a minute..so forgive me if this is jumbled. I remember someone posting about trying to contact Oprah in hopes of getting info. out to the public. I was wondering..is there any way the folks here could put together an info. packet..you know with general info. and some personal stories..that we could send to different medias? There's TV, Radio, Magazines, and Newspapers we could target. You know, like People, Cosmo, Women's Health...the Today show..USA today, the NY times...possibilities are almost endless. It may be a waste of time..but is it something we could try? I feel it would be more successful if we all joined together to present info. instead of one person here and there trying to contact people. I know this isn't a new idea..but what do you guys think? Maybe create a printable packet that could easily be presented..instead of having to cut and paste info. from different areas. This could also be used to bring to doctors. Am I making sense..I can't tell..LOL

Well, I was dx earlier this month and was given meds. to try..unfortunately I haven't been able to bulid up the courage to take them. I know this is irrational..but every time I even think of taking them I get really panicky. I know that I won't get better without some help..and I know that I should feel good that there are things that can make me feel better..but I'm still scared. I just feel so bad all the time..I don't want to feel worse...and I hate feeling "druged". I've been pretty much in bed now for almost a year..only sit or stand for a few minutes at a time..I have to do something! I've decided to start this weekend..and only take a 1/4 tab. instead of 1/2 tab of florinef and clonodine. My Mom has been really supportive..but I know she's getting frusterated that I won't even TRY the meds...heck, I'm frusterated with myself..and angry that I can't get past this. I mean if I can't take these then how will I ever have the courage to try other more "extreme" medications? Anyone have this problem? How do I get past this? Thanks for listening!

I finally got my official dx of pots..Unfortunatly it's not the kind that typically goes away. My doctor said that my sympathetic ns is so heightened that I've most likely had a problem for quite some time. I'm trying to accept that this is going to be a chronic problem for me..but I don't know how to deal with this. It's been over a year now..not working and most days can hardly get outa bed...I don't want this to be the rest of my life. I will be starting the trial and error of med. treatment. He is starting me on florinef and clonodine...I'm scared. I've read about others haveing problems with meds...I just don't want to get worse. He also said it would be at leaste 6 mths. till the meds could be adjusted and changed accordingly to provide relief...then if I'm lucky I may be able to work again..in another year. Of course he also said everyone is different and it's hard to put a time line on this. I trust this doc..he also had dysautonomia and his pt's seem pleased with him. It's just not what I wanted to hear. I have so much anger and sadness..my body is constantly running..but I don't have and energy to release it. I try to distract myself..reading..watching TV..crochet..but it's always there. Every second of every day just below the surface is the question..what's going to happen to me? Am I ever going to be able to live alone and be independent again? How am I going to support myself as I get older (I've just turned 28)? Will I EVER smile again? There's just a constant fear of the future that I can't turn off. Does anyone else have specific problems with the sympathetic ns? Has anyone had good results from these meds? ANY good thoughts or experiences would be much appriciated. Sorry about spelling..it's never been my strong point. Thanks all for listening!

Thanks Nina! The info. was very helpful!

I just had part of a filling come out and will need to have it repaired some time in the near future. I was wondering if it's "safe" to have novicane? Has anyone had problems getting dental work done? I haven't gone to the dentist since I've been sick and was curious!

I'm not "in" FL...but live right on the line..close to P-cola. There is a doc. there..I'm new to this and just started seeing him. I know this is too far for you to go but, if you like I'll ask if he knows of anyone close to your area. If you ever want to "chat" I'd be happy to give you my e-mail address so that we could get in touch. I've just turned 28 and am living with my mom! This all hit about a year ago and I'm hoping my doc can give me some kind of tx plan that will help! Welcome to FL!

I've noticed the entire time I've been sick my period brings on severe symptoms. At first I actually thought it was a hormone problem..but that checked out okay. I was taken off bc pills for about 8 mths. when they thought it was EBV but have since gone back on them. I'm usually at my worst during the end and following my cycle. This will sometimes last until my next period. I also get a reoccuring hive on my wrist..it started the same time I got sick. No one has addressed the hive issue and I'm wondering if it could somehow all be connected? Has anyone tried the new bc pill..seasonel..if so..has it helped at all? Plan on asking my doc in a couple of weeks but wanted to check with ya'll too! Thanks!

Thanks all for the support! It is comforting to know that there is "life" after this dx. Just hoping to get to the point where this is manageable so that I can get on with things. In regard to the Mayo Clinic in Jacksonville. I'm not sure why the "specialist" didn't have any suggestions and classified it as an a-typical anxiety prob. I only had a 10 min tilt. My bp stayed pretty level, but hr rose from 80 to little over 120. They said it was abnormal..but not enough to qualify as POTS? I am seeing another doc in P-cola who also has the disorder and fortunatly sees it another way. I've sense had further testing with a longer tilt..only able to last 25 min (it was longer than I thought I would). During the test my bp was all over the place and hr went from 70 to over 120 and stayed there. I'll see my doc soon to go over the results and hopefully will have some idea of possible tx plan. I've never passed out, just feel like I will. It's difficult to sit or stand b/c I feel as though I'm being pulled down to the ground. I have basically ALL the symptoms of POTS..and currently even my "good" days aren't so good! I'm am very greatful for this site and all of you! It's nice to know I'm not alone! Have a great day..and WAR EAGLE! P.S. Yes..I'm in AL.. and went to Auburn. For those of you up north who may not know what that means..war eagle is our battle cry!!

I haven't "officially" been diagnosed..yet. I've been sick for 14 mths now. Like most of you I've seen so many doctors and have been misdiagnosed so many times I'm beginning to lose my faith in the med. profession. At first it was a B12 deficiency..when treatment didn't help I was dx with a sinus infection..which apparently triggered "anxiety attacks". Then it was mono..EBV..but after 6 mths of no improvement I finally landed at the Mayo Clinic in Jacksonville. Everything was "normal" except my autonomic reflex screen..so I had to return and have an extended tilt and to see the "specialist". It was quite disapointing when the "specialist" at Mayo indicated that although my tilt test was "abnormal" I fell into a "gray" area and most likely had an a-typical anxiety disorder. I work in the medical field as a Speech Pathologist and know a bit about nero. issues..also have worked with many physicians. I've never been so frusterated and angry in my life. Don't know if it's b/c I'm only 27 or if it's b/c I'm a female...I feel he completely blew me off. I have found a doctor in my area who is a specialist..he actually has this disorder. I was lucky to get a second opinion. I had another tilt test recently along with an ECHO..and will see him in a couple of weeks for the final dx. I haven't had any medication or tx for any of this yet..just hope something will work. Most days I can hardly get out of bed..this had been a nightmare!!! I had just gotten out of school and had been working only a year when this hit..I feel as though my life has been taken from me before I could even start it. I now live with my mother (Thank God for Her) who takes care of me in every way. The future is so uncertain..it's hard to be hopeful. I don't know what I'm going to do..I haven't worked in over a year..can't drive..I live in my bed. It's funny how many things we take for granted. If I could just take a shower..or go the store...heck, if I could just walk outside for 10 min. I'd cry tears of joy. I'm scared that I've lost the person I used to be...I'm in morning for my old life. Every day I have to remind myself that things could be worse..they could always be worse. Have to just take it one day at a time and have faith that eventually things will get better..they have to. Sorry to ramble..it's hard to focus for long..thanks to all for listening. Any advice would be appriciated! Have a great day and WAR EAGLE!!!