Roselover

Nina and Katherine, You know I really like that idea about not calling it POTS but autonomic dysfunction! I noticed yesterday that this doctor, though not really familiar with POTS, only focused on on a drop in BP when standing. I have so much more than blood pressure problems! Sometimes, my BP is OK - but I'm not. Thank you so much! This is really helpful - I will change the way I phrase it from now on and re-educate my Primary too! Thanks! Roselover

Well, if you read my last post, you know my husband and I are looking into a trip from the West Coast to one of the specialty centers. From reading posts hear, it seems that Mayo, Cleveland Clinic and Vanderbilt University are the top three (exculding Dr. Grubb who dosen't seem to be taking new patients right now.) My question: How do they differ? What do you get from each one? How did it help you? If many of you would share your experiences I could assimilate and figure out which one might be best for me. (Plus, my husband wants to know if it was really worth it for the majority of people who have done this.) Thanks! Roselover

OK Everyone, hold onto your hats. Get this. I arrive at the endo today. He walks in and greets us. Then he proceeds to tell us that there seems to be a bit of a mix--up. When my primary doctor spoke to him he understood her to say I had Pots Disease, which is tuberculosis that has settled in the spine. But he has actually never heard of POTS - Postural Orthostatic Tachycardia Syndrome!!!!! NO - REALLY - My husband and I fought back the tears!!!!! We really thought we had finally found someone who understand and give us some help. BOO HOO!!! Well, he was very kind and spent over a 1/2 hour with us giving us every bit of information he could about endo causes of OI. His best advice was that we need to, as he said "stop piddling around with doctors who don't know anything. Get in contact with one of the experts!" We live on the West Coast - this is a big decision, but we are praying about it and trying to consider what to do next. I am so tired of being tired. Roselover

Thanks everyone, I too have wished that I could hook up to an IV at night. The morning broth idea sounds like a possibility too. I guess I just need to accept the fact that I am no longer a morning person. A sleep study was suggested to me, but I really really don't want to do it. As Dawn said, I have enough problems sleeping at home. I can't imagine sleeping with stinky things stuck all over me. I really appreciate the comments. THANKS! Roselover

I always feel horrible when I wake up in the morning. I know my BP goes low when I am laying down, but I wonder if there is something else going on, or if I feel so bad because I've gone 9 hours without drinking much. Anyone else have this? Anyone had a sleep study? If so, did it find something that helped dysautonomia? Roselover

Hi All, I'm going to see a new doctor today - and endocrinologist. My primary doctor talked to him and he had just come home from a conference where they had presented a POTS patient! He was excited to see me. When they made my appointment they asked really good questions about what had been checked so far and it sounds like he will be thorough. I'll let you know if it was helpful! Roselover

Amy, Yes, the POTS is very hard when you don't have a doc who understands. However, any compassionate doc understands pain. I would encourage you to seek out some medication for this pain. I too get these cramps - actually I had them just last night. I have a variety of pain meds I use depending on the type and severity of the pain. At first, I was unwilling to take meds and valiantly put up with the pain. I've concluded that it's not valiant - it's stupid. If it destroys your sleep then you are just going to increase many of your other symptoms. I also take a supplement called ZMA - it's a zinc, magnesium, B6 supp that helps with sleep and the magnesium is supposed to help with muscle pain. It does help my sleep a lot. Hope you can find one of your docs to help with this. Roselover

I'm at the bottom, grasping my cup of tea and straining to see the sunlight at the top of the hole. BUT, this morning when I awoke, I thanked God for leading me to all of you because knowing there are others out there going in an out of the hole is a real comfort. Ernie, Dayna, would you like a cup of tea? Roselover

I'm sorry to hear of your ER expereince too! I've had these symptoms too and they are very scary. But it's so frustrating to face a doctor and know more than he/she does!! RunnerGirl: You mentioned being checked for pheochromocytoma. How do they rule this out? I am seeing a new Endo this next week and this is actually one of the things I was hoping he would check. It is done with a CAT scan or some other way. LindaJoy, I hope you are feeling better today. Roselover

I have a degree in Child Development and Elementary Teaching Credential. However, After having my first child 18 years ago, I became a stay-at-home mom. That didn't keep me from being busy and even having a few odd jobs here and there, working with kids. My goal has always been to raise my kids, but keep my eyes on the time when they would be grown and I would have more time to pursue other fun job choices. As my kids have grown, I have delved into writing and speaking. When this disease hit, I was speaking at workshops and retreats 5-8 times a year, had two books in process and I was teaching Creative Dance and Pre-Ballet for 3-7 year olds. I had to quit my dance teaching two years ago. I no longer accept speaking engagements because I don't have the strength right now. I haven't done any writing in over a year. I have changed my goals for myself too. My goal is to take a deep breath and enjoy whatever I can do right now. I am learning to watercolor, read a little when my brain is clear and write a little when I can. It's not much. But I do my best to enjoy it. I am luckier than many - I have a wonderful husband who - though $ is tight for us - provides enough for me not to have to work. BUT - I keep in mind that if I find some treatment that helps I will be able to add some of these back in. First the writing - just a little brain clearing is all it takes. Then the speaking, and maybe even someday the dancing too! Thanks for asking this question - it's encouraging for us all to remind ourselves that there are things we CAN do!!! ~Roselover

I too live in the Portland area, but on the Washington side! I love it! The rainy seasons don't seem to affect my symptoms at all and I love the beautiful green. Everywhere you look you see green. Yes, we do have a lot of rain, but it breeds beautiful roses and dogwood trees and green green green. OK I'm repeating myself. I guess you can see what I like about living here. I wouldn't want to live anywhere else! EXCEPT: As Briarrose said - the lack of POTS knowledgeable doctors!!!! Roselover

I'm mid 40's and have wondered the same thing. The other thing two different doctors have told me is not to worry, because most people find that their symptoms just fade away in a couple of years. Well, I'm on year 3 and not fading! This doesn't seem the case with most people either. I believe my mother has POTS and other things -but she refuses to get tested. Early on she decided she had MS, but no evidence of this has been found. Her's began to get severe in her early 40's and that's when mine did too. Anyone experienced an increase or decrease of symptoms with Menopause???? I've been wondering about this too. ~Roselover

Hello Sunisshining! It really helps to know you are not alone. There are many losses with this illness and they vary depending on our age and circumstances. Remember that it's OK to grieve your losses and you need to allow yourself this grief. I strongly encourage you to read eveything there is on the Potsplace website. There are many good tips that might bring you a little relief. Are you a student at Stanford? I grew up in Escondido Villiage - the married student housing at Stanford and went to school at Escondido Elementary. I have very fond memories of Stanford and football games. That was back when they were the "Indians" instead of "Cardinal" I will pray for you too! Roselover PS: I am sitting in bed (no panda though) with my laptop in my lap too!

Thank you Mogan, I have my cup of tea in hand (literally ) And... I'm buying my ticket to Amsterdam...I'd love to have a doc who makes housecalls too!!! Merrill, do you think he will be overwhelmed with all of us moving in??? Thanks for the support. I am planning on calling my PCP on Monday, but here's the thing=s. She's great, but is so very busy, and it takes a lot of time to research this stuff. She has her own health issues and rehab going on as well. But I do love her. My sweet husband has put me to bed so I won't pass out, set up my computer on my lap and is making me lunch. Now what do I have to complain about??? Trying to keep my head up while in the canyon, and very thankful for your company, Roselover

Hi LindaJoy, Oh I am so sorry you are struggling so much. The last thing we need is stress from an outside source. You know what it sounds like to me? It sounds like there are some people at that Newspaper with very guilty consciences!! And so to deal with their guilt they are going to intimidate you and flect their guilt on you. Here's my suggestion. First, remind yourself of the truth. Remember that what others want to think about you isn't as important as the truth. Don't let their intimidation and false accusations weaken your hold on the truth of who you are. Second, I think, if possible, you should cut off the converstions with the people who want to tell you more about the games and gossip. You don't need to hear it and you don't need to play their games. Third, I too am a writer. There is such a variety of feelance needs out there. I am sure that there are many other places that could use your skills. I would encourage you to put your energy into looking for the great new opportunites that are in your future. So, what kind of writing do you like to do? You mention a magazine and a newspaper. What type of magazine? Do you like editing or writing better? I am sure you are a gifted person and you don't need this relational stress. I am also confident you will find a better environment to use your skils! Hoping this encourages you. Sincerely, Roselover

Tuesday I put a call into the cardio who put me on florinef and BB two and half months ago. I'm doing worse and asked about the possibliity of being one of those who shouldn't be on one or both of these meds. I also asked for help finding a Endo and about IV Treatments. Well, I finally heard back from his office last night. Here's the message. "The doctor didn't respond to your questions yet and he will now be gone for three weeks. The physicians assistant looked at your questions and suggests that you follow up with your endocrinologist or your family physician." My family physican has never prescribed florinef - this is why she wanted this cardio to oversee it. I feel like I have nowhere to turn! I am thankful that my primary has found me an endo to see in a week and half. I just hope these meds are not making me worse or going to cause some complication before then! My BP has dropped as low as 74/49. I haven't felt this bad since right after my TTT. You are all a great comfort to me. Ernie is an inspiration and many of you have reached out to me. Thank you! ~Roselover

I'm wondering if anyone who has seen one of the big-wig specialists like Dr. Grubb would have an idea of what he would say about this. If someone was on Florinef and beta blockers and after 2 1/2 months had a big flare with dropps in BP, would they increase the florinef or say that it wasn't working? I feel so awful this morning and I have no one to call. I've been on .4 and had horrible headaches. Lowered it to .3 and had scary "autonomic storms" and chest pain. Lowered it to . 2 over three weeks ago and am just now having sudden BP drops again, and feel like just like I did after mh TTT. I know you all can't give medical advise, but if anyone thinks, "Oh I know exactly what Dr. Grubb would say", I'd love to hear it. Otherwise, please pray for me. I feel so awful today and I'm scared. Thank you, Roselover

Hi Jenn, I have tried Mestinon and I would encourage you not to be afraid to try it. Just be sure to take it with food in your stomach and like Cornia said, start slowly and work up. Good luck and thanks for sharing your experience!!! Roselover

Gena, please let me know what test they do. I have been reading past posting on endo tests but I'd like to arrive at my appointment with as much info as possible! I've been on BB's, Florinef, Midrodine and Mestinon! (Not all at the same time ) I was actually in a drug study for Mestinon for fibromyalgia. I was a disappointment to them because I didn't improve with fibro symptoms, but I think it was really my POTS that was getting me down. It doesn't seem to have helped with my POTS either, but I am not righting it off - at another time in may come in very useful. Good luck with your appointment. Please let me know how it goes! Roselover

Hi Ernie, Thank you for your welcome! Yes I have two pairs of support stockings - my insurance even paid for them. But, they are so hard to put on!!! If I haven't pulled my back muscles while putting them on, I am exhausted! I only use them when I am going to be out and up for long periods, but even then they don't seem to help that much. I also don't have swelling in my feet. I have swelling in my abdomin! Glad you felt encouraged by all the messages. ~Roselover

Hi All, I know I am new and don't know most ofyou yet, but I you all seem to share your ups and downs. I too have been in the POTS hole, just keeping to my own little corner until now. Nice to meet you all down here! Since I was diagnosed I have been trying to rule out some of the more major causes of my POTS and severe fatigue. My family physician is fantastic - delivered two of my children and saved my life in one delivery - but she's never heard of POTS, never dealt with florinef... she's empty handed. I've seen a neurologist, and infectious disease specialiast and cardio who started me on meds, but none of them seem interested in really helping once the initial treatments don't work. I have asked and asked to see an Endo and FINALLY yesterday, my family physician called with the name of an endo who will see me. This doc just came home from a conference where they presented a POTS patient and he was the only one who was able to recoginze it and he is very interested and at least a little knowledgeable about the syndrome! Not only that, I get in in two weeks - pretty good in comparison to my other specialists. AND he was very thorough in asking what I had checked so far. They were very surprised I hadn't had any testing done on my adrenals yet. It's amazing how just having a doctor who is interested restores my hope. Like all of you, I don't want to put too much expectation on this visit, but I can't help hoping a little. Thanks for listening! Roselover

Thank you April! Anyone else willing to share with me?

Yes, Merrill, I have had these side effects and I thought it was the Midrodine, but now I wonder if it's the beta-blocker. Your experience increases my suspicion. I find the heart pounding very disconcerting - to say the least!!!! A few weeks ago I was trying to describe the feeling to my cardio and he sent me to the ER! Of course the did the full heart attack workup and found nothing. The only good thing was the IV they gave me. It helped me feel better for over a week. My husband laughs at any doctor who tells us that something iwe ask about is very rare. He says if it's rare, then I must have it!!! I find mine comes and goes. Hope you do better tonight. Roselover

Ernie, I am new to the forum and you haven't met me yet, but I wanted to add my words of encouragement. I am glad you shared your story because I think you will be encouraged by all the support and reminders of the TRUTH. You KNOW you have a physical illness but we all reinforce that truth with you! I am so sad that you were treated this way and I am glad you had the strength and insight not to be pushed around and to stand up for yourself. Praying with you that you will find the help you need. Roselover

Hi everyone, I've been searching the archives about Florinef and I haven't found the answer to this question, so I thought I would ask you all to give me input. I understand that the dosing of Florinef really depends on the person, but I am very curious what types of doses are you are all taking. I am on .2/day, one in morning and one in eve. I started with this dose, then it was increased to .4 which I think is really really high. Then it was lowered to .3, which I also thought was high and I've now lowered to .2 again. So how much is alot, and how much do you take??? Thanks for sharing your personal info with me!