Jillybeanbme

Dear Ernie, I am so sorry your visit did not go well. I don't mean to be rude, but where on earth do you live that it takes a year to have an EMG done? Are there a limited number of Neruologist in the area and this guy has a monopoly on things? Where I live the wait for an EMG is 2-3 weeks at the most! Is there a larger city close by with more neurologist ? We have three hospitals and competion is fierce. You should not have to wait a year! I'm sorry, but it angers me. You would think after the way things were in the office he would want to find out some answers sooner than one year!! There is such a thing as working in patients as in 'this patient needs this test done STAT' and putting them on cancellation lists to get them in sooner. I wish you the best of luck. Jill

Tearose & Lois, Thank you for giving me more insight on Mayo. Tearose you said you had no idea the full extent of your dysautonomia before going there. Well, I guess that's what I want as well. I don't see Dr. Thompson again until Feb 10 to get the results of my tilt I'm having Tuesday. When I see him I would like to have a list of new questions prepared about just what is the full extent of my dysautonomia. What are some of the test you had at Mayo that you were not able to get locally? Since I work at a medical facility, I could find out before my next appt. if those tests or equipment are available here. As to how have I been? Other than some recent awful migraines, not too bad. I was having some digestive problems, but after a wonderful suggestion from Opus, I cut bread out of my diet and I'm doing much better with that. Thank you for all of your help and knowledge. Take care, Jill

Janet, Did your PCP have you fill out a questionnaire about the types of headaches, the time of day or day(s) of the week and the symptoms you get with them? It's a common checklist that is used to officially dx whether your headaches are tension, cluster or migraines. It is possible to have all three. If you feel like your PCP it's doing all you would like, maybe see a Neurologist that specializes in headaches & migraines. From my experience, yours kind of sound like tension. I say this because migraines generally are one sided. My headache problems started 10 years ago with tension headaches, within 2 years I was having full-blown migraines. Sometimes I can take Excedrin Migraine to dull it enough to get through the rest of the workday. Then there are times like the past two weeks where the pain is so bad it brings tears to my eyes and I end up throwing up before taking an Imitrex and going to bed. My hormones play a big part in my migraines. I can always tell when I'm ovulating because I get a migraine and generally a day or two before I start my period I get one as well. They also run in my family. Every female on my mom's side of the family has them!! Good luck. I feel your pain! Jill

Amy, I too have the lapse in memory problem. Here lately I have been forgetting what I'm saying mid-sentence. Not a good thing to be doing on the job!! At work, I have notes everywhere and I try to as detailed as I can be in case I forget. Sometimes it works & sometimes it doesn't. A good thing about it is, I'm not quite as OCD as use to be because I can't remember to obsess over things! So far it's just my short time memory. My long term is still like an elephant. My doctor said the same as Laura's, that it could be caused by low BP, from the tachy ( causing decrease blood supply to the brain), and dysautonomia. In the mean time, maybe we all should take out stock in 3M with all the Post It's we are using to remember things. Take care, Jill

Dawn, Validation is Wonderful isn't it!!!!!! Congratulations on a sucessful trip!! Jill

Tearose, I'm happy you got some answers. Could you maybe answer some questions for me about Mayo? I'm still learning. What can the Mayo Clinic do for us that our other doctors can not? Are we just research subjects for them? The closest one to me is Jacksonville. Thank you for sharing your knowledge! Take care, Jill

I have suffered from cold feet (and cold hands!) all of my life!! When I was young it was a great torcher device against my older brother. I've always either sucked it up (especially at work), a warm foot soak followed by cream & thick socks or the tried & true...a warm body to sick them next too or under!! Opus, my mom got me those gel socks for Christmas! They are great!! Jill

Ernie, That is a wonderful thing you did for your niece and for future patients of those physicians!! If you would please pardon my ignorance and educate me on the effects of anesthesia and C-sections in someone with POTS. I have had 2 C-sections, both prior to being dx'd. My first was because he was a big baby and I have a small pelvis. I believe they called it Celopelvic dysportion. Anyway, he was a conehead when he came out! My second was because my water broke and I never dialated. Not even fingertip. I had a harder time bouncing back after the second. Even though I don't plan on having anymore children, knowledge is power! Congratulations on your new nephew!! Jill

I do this when I go to a new doctor and it blows there mind!! I hand it to them along with my list of questions I want answered and my suggestions of things to try. They are like 'Wow you've done your homework'. I started doing it because I tend to be a little OCD plus, the doctor always distracts my focus with questions and I forget the things I have questions about.

Hey Wareagle & Mhjj5 we must be neighbors!! Hearing how wonderful he is from other patients of his just renforces the way I felt when I left his office yesterday. I feel like I have finally seen the light at the end of a long dark, lonely tunnel. I believe he will help me. Jill

Mindy, I wish I had the answers for you and all the rest of us!! I will keep you in my thoughts and prayers. Best wishes, Jill

My visit with Dr. Thompson Thursday was rescheduled for today. He started feeling bad yesterday and had to go home. I got to his office this morning at 8:30am and did not leave until 11:00!! It was a wonderful visit; I am very pleased with him and his attitude. He went down my list of problems (symptoms) and explained to me one by one why it was happening to my body. He doesn't want to start me on meds just yet because it has been 3 yrs since my last tilt table and I have symptoms now that I did not have then so he wants to see how and/or if things have changed. From my family history info that I was able to get from my mom, he does think it's familiar as my maternal grandmother had a lot of the symptoms. He also thinks I might have some Fibromyalgia going on. He said that before finding out my mom has it as well. Aren't genetics just Great!!! Now I have something new to research. My tilt table is Jan. 25th and my next appt. w/ him is Feb. 10th. I'm excited about the TTT so I can find out if things have changed, yet I also dread it because I know that I have to fast and by the time I do get to have something to eat around 11am, not only will I be nauseas but I also will have a horrible migraine!! But, if that's what I have to do to feel better and continue living life to the fullest, it's a small price to pay and I'm there! Thanks again everyone for listening, being supportive and for telling about your life as well. I nice to know I'm not alone. Jill

Morgan, Have you ever tried propping your feet up when this happens? When my calves & feet are throbbing like they are going to explode any minute and feel like they are on fire, I lye on my bed and prop my feet up on the headboard. I also put a pillow under my feet for comfort. Best wishes, Jill

Tearose, Since Dr. Thompson suffers from POTS himself he limits his practice to the treatment of pots and other dysautonomia things and he only sees patients a couple days a week. He used to have his Internal practice where I work and I always heard wonderful things about him. I just recently found out he was back seeing patients. I guess I'll find out Thursday what kinds of testing/treatment he does. As a matter of fact, he was the doctor who interpreted my tilt table test. So I don't forsee him giving me the run around. Today was a bad day. Short of breathe all day, hot flashes, dizzy and I kept forgetting what I was trying to say mid sentence. I don't understand, I rested all weekend. Thanks again for everything, Jill

Oppus, I just spoke with my Ophthalmologist that performs LASIK. Surprise, Surprise..she is aware of Dysautonomia and said that LASIK would NOT be good for someone suffering from it especially if they suffered from dry eyes as it would only make matters worse. Everyone I ever encountered loved having LASIK done. No regrets, even the few who had to have enhancements. Oh yeah, I wouldn't exactly call me an eye expert...just knowledgeable.

Ginger I've never heard of those theories. I'm curious, please tell me more. I live in the "Sunshine State" so I've had plenty of sun exposure growing up! I quit "trying to get a tan" (I'm fair skinned) when I was about 15 after getting a bad case of sun poison.

Thank you Tearose, you are too kind!! My appt is this Thursday Jan.6 and it is with a local specialist who also suffers from POTS. He had to give up his Internal Med practice because of his POTS. When I called his office to make the appt I was told I had to be referred, so I contacted my Neurologist for a referral. You would think my Neuro would want to see me first since it has been 3 yrs since I've seen him, NO, he did not. I'm not sure if I'm happy he saved me the money of an office visit or ticked that he wrote me off so easily. I hopefully will start getting the help I need. I have been making a list of "things wrong with me", if I don't I will never remember to tell him all of them. If it were not for this forum I never would have associated a lot of things to my POTS. I'm currious about the tired thing. I've read in a lot of these posts where some of you can't work and have difficulty getting out of bed. Has it always been that way or was it gradual? I'm always tired, sometimes more than others, but thankfully I am still able to work. But unfortunately, because I use my energy for work I don't have much leftover for my kids. Guilt..Guilt..Guilt!!! Ginger, While taking Florinef make sure you get your potassium checked. I wasn't followed up properly after being put on it. Two months after I started taking it I had to have an emergency appendectomy and was given 2 bags of potassium in the ER because mine was so low. Good Luck! Thanks again everyone for being so kind and helpful!! Happy New Year, Jill

Hi Denise and welcome!! I'm new to the form as well. I understand your frustration. I too was told that I could follow up with my PCP. My PCP doesn't even ever ask me about it and it's been 3 yrs since I was dx'd!! I'm tired of being tired and I'm going to a local specialist this week who happens to suffer from POTS himself. I have learned more reading posts on here in the past two weeks than I have searching the internet the past 3 yrs!!! The people on here are amazing!!! Good luck with your search for a doctor, especaily with Tri-Care. Tri-Care doesn't pay very much so a lot of doctors don't accept it. Not to metion it's a pain to get Tri-care to give you the referrals you need. Happy New Year & Best Wishes, Jill

That's an interesting article. I had always heard that MS primarly affected white females from the Northeast. I have a friend from NJ with MS, it took 5 yrs of testing for doctors to finally dx her. Her doctors lean towards the "tick theroy" for the cause. And that was without them knowing she grew up riding horses. She still rides to help stregthen her leg muscles.

Ginger, I have the snotty nose and horriable phelm in the morning problem as well. Sometimes my Allegra helps the driping and post nasal, but the morning loogies remain. As for sweating, only at night in my sleep and vaginal stuff...nothing works down there lately!! Jill

Opus, You wouldn't happen to be from the Pensacola area would you? I'm very happy for you that you are back in your home. Had I not sold my house in Gulf Breeze 2 weeks prior to Ivan I would have lost everything. My house there got almost 5 ft of water. I had the same decluttering problem when I was moving. It's especially hard to do when you just don't have the energy. Take care. Jill

Thanks so much for just being here!! As I read postings, so many things that have been happening to me are finally making sense. I wish I had found this site a long time ago. I have been needlessly suffering because of lack of information.

I am so glad I found this web site!! So many things are finally making sense!! I too have fair skin, blonde hair with hazel/green eyes. Although I wasn't dx'd until I was 30, now that I know what the symptoms are I can remembering having them as far back as I can remember!! My Mom says when I was an infant I would never cry when I got shots. The nurse told her that was not normal and proceded to pinch me so hard that it left a bruise to make me cry. I have never been able to tolorate the heat. My first pregnancy was good, my second.. I threw up every morning. Some times it was nothing but bile. My Ob's excuse...maybe galstones..ultrsound was negative. I was short of breathe all the time and just couldn't seem to keep my balance. Family history? Unfortunatly my family members are not very good historians. My maternial grandmother did seem to have a lot of POTS symptoms, but she lived in a small country town where the doctors would probably look at you like your were crazy and would have NO CLUE what you were talking about if you even mentioned POTS or Dysautonomia. Her cause of death was congestive heart failure and for some reason that they just couldn't figure out ..her blood pressure was always dropping low..ummm. And she always had cold hands & feet.

Dear Opus, I have worked in eye care for 11 years, 8 of those years with a multispecailty group of Ophthalmologists including a Corneal Specialist who performs LASIK. I can tell you from my experience in doing the diagnostics test on the patient?s pre & post opporative that as Nicole's Mom said some people do have some light sensitivity. However, I have never seen someone who had that much. Dry eyes (even without POTS) are sometimes common after surgery. A good Ophthalmologist will load you down with plenty of samples of artificial tears after LASIK. And like Gina said, there is also the option of Punctum Plugs. They are inserted in the office and are used a lot in people with Sjogrens. As for the pre opporative anxiety...most doctors will give you a Valium before hand. Most doctors who perform LASIK will give you a free screening to see if you are even a candidate. The screening should include a Corneal Topography and ask for a Schirmer's Test. The Schirmer's will measure the amount of tear flow in your eyes. Some thing's to ask the doctor...are they Board Certified....how many LASIK procedures have they done...does the price include follow up care and enhancements and if so for how long after the surgery and have they or anyone in their office had the procedure. You would be surprised at the number of physicians who have had LASIK done themselves, not just Ophthalmologist, I know of Gastroenterologist, Allergist, Anesthesiologist, Oncologist, RN's and physician's spouses. The best advice I can give you is do your homework about the physician and the procedure so that you can make an informed decision. Good luck!!! Jill

I was dx'd with POTS/Dysautonomia 3yrs ago. (I should have been dx'd in my early teens but no one would ever listen to me.) My neurologist didn't really explain it to me. He just said take this medication(Florinef), increase your sodium, potassium and fluid intake. Oh yeah, and wear compression pantyhose. And to follow up with my primary care physican. My PCP never really addressed the situation again. I quit taking the Florinef after I puffed up and decided to just suck it up. Well, I can't suck it up anymore and I have an appt with a local specialist. I only made the appt because I have been staggering occasionally when I walk(does anyone else do this?). Now after doing some reaserch of my own and reading postings, I now know that all the other things going on with me are possiably related...so I not crazy after all!!! My appt is next week. Please tell me some things I should request to have done. I've had a Tilt Table and general blood work including tyroid & B12, but that 3 yrs ago! Oh yeah other things happening...night sweats, constipation, moody, lack of sex drive, shortness of breath, forgetfulness and the usual stuff dizzy, loss of balance, cold hands & feet and this "fruity, something's just not right" feeling in my head. I want to make sure I ask all the right questions. Thanks for all of your help and honesty. It 's nice knowing that I'm not alone and someone else does understand!