briarrose

Welcome to this forum. I'm glad you found us. I'm sorry that you've had such a go of bad luck with the medical community. I would like nothing more than to educate the medical professionals that we have to deal with and develop techniques for public awareness. It would be nice if your husband could read some of the comments here. Sorry can't remember the name, but we had someone's husband comment last week and he was terrific. In fact there are several husbands that read these posts, comment and support their spouses/partners. I noticed that you made a comment about your fourth pregnancy, I hope your not getting outside pressure about the number of children you have. I'm a single mom of six and love everyone of my children. I've heard just about every nasty comment there is about bringing multiple children into this world. But I've never been on welfare and my children have never been hungry. Their well loved and happy for the most part (I have teens and I wonder if their every happy. Just kidding, they have their moments but they are fun!) Back to headaches- I was getting daily headaches and migraines long before POTS. My vision and hearing would be distorted. A year ago I started vomiting with the migraines. When I was taking Atenolol it would keep my headaches and migraines at bay. Sometimes I would take fiorcet for my headaches, especially if it was from caffeine withdrawl. Usually Imitrex cures my migraines. There has only been like 2 or 3 times that it hasn't worked. I can usually take 25 - 75 mg of Imitrex and be rid of it all together. If I start early enough when I feel it coming on, I can get rid of it without complications. I can't drink wine anymore because it brings on the worst migraines you can imagine. Anyway, that's my 2 cents. Good luck with everything and I hope your new doc works out for you and provides you with better management. I would also suggest going back and reading previous posts, there is a lot of great information there. steph

Margaret That story was incredible, your daughter is such an inspiration for others and your a wonderful mom! Thank you for everything you said about all of the great people that frequent this sight and give their support to others! steph

I love Neurontin. If I had to choose between one of my medications, it would be Neurontin. I suffered from Joint pain for over a decade. I saw three different rheumatologists from Oregon to New York, a couple of internal medicine doctors and so on. I saw Dr. Grubb last summer and I told him about numerous symptoms in addition to the joint pain, such as my extremities going numb or loss of feeling all together. He said that my neurotransmitters were over stimulated and he put me on Neurontin. It was the first relief that I have had, it completely takes the pain away! I'm chemically sensitive so I started on a very low dosage of Neurontin, 100 mg every 8 hours. He increased my dosage to 800 mg a day, I only take this much when I'm really in need. I haven't had any side effects what so ever. Neurontin can be taken for many different things and Dr. Grubb also recommends it for migraines. Diabetic patients take it for neuropathy. I love this website too, it explains some of the usage of Neurontin: http://home.tampabay.rr.com/lymecfs/nfaq.htm

Thank you Merrill. This blows - somedays it's hard for us but we try to remain as positive as humanly possible considering the circumstances. That's not to say that it doesn't get a little overwhelming and that we don't get angry about it too. But one reason this spot is so great for all of us is because of the positive contact and uplifting comments we have with each other.

I know I posted this once before, but a friend of mine who understands this illness pretty well said that he feels that many of us are predispisitioned to dysautonomia/POTS. Most of us are type A+ personalities. That people like us are constantly pushing ourselves. That every person has a breaking point. His analogy a steel beam that takes so much weight that it eventually bends (sounds pretty impossible when you think about it but it seemed pretty realistic to me, good explanation too.) The body eventually gives way to all the factors against it.

Ponies http://www.guidehorse.com/ http://www.vet.purdue.edu/vcs/knox/se-ponies.html

I'm speculating but I think that the majority of us don't know how we developed POTS. I don't think that it's clear cut very often. I think some of us are predispositioned to it (hereditary.) As for our stories, I'm sorry too tired tonight to tell it again. However if you scroll back through a couple of weeks you'll get a good idea because this topic comes up every couple of weeks. steph

Jackie I'm still planning on posting, just haven't got around to my story. Will most likely send you an individual email too with some of it so I don't bore everyone.

Thanks for posting the link Nina. I had never read this but found it very interesting. I'm a little concerned about a dog being able to help support ones weight. Wouldn't one of those miniture ponies be better for this purpose? steph

Calypso Your welcome. I hope you didn't miss understand me. I don't believe that my case of POTS is related to our family history of thromboembolism. Dr. Grubb suspects that I've had POTS most of my life, I haven't been approved to have all of the blood tests that I've listed. I would bet more on vascular issues and (hypermobility.) I know that we kid about there being a link to Ohio, but I know it's more than that. If there is suppose to be 800,000 of us in America, Ohio has just recognized their patients, what about the rest of America. steph

Sorry I was so tired earlier when I replied I didn't mention what kinds of tests you should have done if you are concerned about this disorder. My doctor recommended the following: Antithrombin III deficiency/antigen activity levels Protein C activity levels Protein S activity levels (free and total) Factor V Leiden Lupus anticoagulant Anticardiolipin antibodies Prothrombin G20210A mutation homocysteine levels or the MTHFR mutation. PT/PTT I think that's all of them.

RunnerGirl I think this is my 4th or 5th beta blocker. I've been on it since last summer and I'm doing very well with the low dosage. Ive been struggling with orthostatic hypotension for many months now, unrelated to the beta blocker. I have also taken beta blockers that have dropped my heart rate down into the 40's but not Betaxolol, I haven't really suffered any problems yet do to this beta blocker. I'm very chemically sensitive, you can probably tell by the low dosage of medications that I take. It's always worth a try. Good luck. steph

My family has a history of blood-clotting disorders. They caused my grandmother to have a PE (pulmonary embolism) and die. I believe 4 of her siblings also suffered the same sort of fates. 2 of them after gallbladder surgery. 2 of them spontaneous with DVT's (deep vein thrombosis.) You have to be careful when you have a blood clotting disorder not to take birth control pills. My mother has told me since I was a teenager that I must never take bcp's. Now they can test you for many blood disorders if you can get your insurance company to approve it. Back when it was important for me to know, I couldn't get my insurance company to pay for the blood tests. There are several different blood clotting disorders. Factor V Leiden http://www.factorvleiden.org/ http://www.martinmemorial.com/clinical/adu...od/hemophil.htm http://www.rushcopley.com/HealthContent/Ad.../thrombosis.htm http://www.rushcopley.com/HealthContent/Ad...t/blood/itp.htm http://www.hemophilia.org/bdi/bdi_types6.htm

Ok back when I took Atenolol, Dr. Grubb tried me on Lexapro which I couldn't tolerate. When I first started on Atenolol I took 12.5 mg a day and eventually ended up on 6.25. I took Atenolol for over a year (I believe, I'm tired this morning and my memory isn't great right now.) I started taking Lexapro and I think I stopped taking it because of the intense headaches I got with it. I eventually had to switch from Atenolol because I couldn't breathe well upon awakening in the morning to Betaxolol. I take 5 mg of Betaxolol. I was then started on Zoloft and I take 12.5 mg of that SSRI. steph

doh Didn't answer the first question. How do you do it? Well there have been times when I've barely managed. I've gone to work at times feeling like I was going to die and so weak that I could barely manage to sit in my chair, let alone think. There are other days I've had to call in sick and stay home in bed. The only reason I haven't quit is because I have to support my family, I don't have a choice. I must push on and endure. The treatments that they've been doing for the past few months are starting to help and it's easier now than it was a year ago. I actually have felt pretty good this past week, at times almost normal and happy/healthy. Steph

Mitch your awesome, can we clone you? JK I'm glad that Mindy has your support and that you understand what she's going through. My hat is off to you, your a rare individual. I know Mindy knows how lucky she is to have you. Steph

Do you rest (cool down in between shower/bath and doing hair?) Maybe if you wait a short bit and let your body cool. Try a cold towel draped over the back of your neck. I have plenty of hats for my bad hair days, just let it go for a few days maybe.

Do you know what your heart rate and blood pressure are when your standing? Do you sit on the floor to blow dry your hair? Do you have other problems such as anemia? There are days that I have to sit to blow dry my hair or just give up and pony tail it. Medically when I was hypovolemic and anemic, I had the most difficulty. So now that I'm tanked up and blood count is good I'm doing much better in that department. I still have some swings but not what they were. There were days I had to crawl to the bathroom. Go through the system check. Call your doc. Maybe you need a medication adjustment? Drink plenty of fluids and salt. And just hang in there were here Steph

I've never been told that either. Let me know what you find out tomorrow. Thx Steph

I know that you should seek counsel from a lawyer that specializes in these sorts of things. I saw one a year ago and she said that POTS is recognized as a disability. That I could legally miss up to at least 6 months, might have been longer (would have to check my notes) without them being able to fire me. As long as I had turned in my paper work to my employer stating my health problems. So I went to work and got the forms of the intranet and my doctor filled them right out and sent them in. He explained in several paragraphs that I might have to take intermittent days off do to my symptoms just appearing at any time. They can?t legally touch me. So my advice is to see a lawyer and know your rights always! Because your employer is the first one to pull the wool over your eyes! Steph

Michelle Sawicki, Mighty Mouse and everyone else that helps here. Moderators and patients! I want to thank M & M especially for all of their hard work on this website. Last year my doctor told me that I had to either see a shrink or join a support group. I asked him why, I wasn?t complaining of depression or anything of that nature. He told me that he didn?t want me to become a ?chronic illness patient.? I asked him what the heck that meant. His nurse said it?s a patient that they do everything for and the patient still complains of not being better. Ok, that is not me! Never will be! Never has been! I was pissed that they would even think such a thing. I want my life back and am trying to be positive about it and I?m not a quitter. Anyway I told him that I visited the NDRF web pages and they were very therapeutic and was this acceptable for him to get off my back. Don?t think he really answered. At my next visit I told my doc that I had checked into support groups and of course they didn?t have one here in Oregon or Washington. He said find something that was close to my illness. So I went to the chronic fatigue support group this past weekend. That was an eye opener. They were very nice people and their topic for that meeting was actually POTS and OI. They passed out a sheet of helpful websites, which included the NDRF. I added this one to the list. I realized how much people need to be told that they really need to stop playing nice and advocate for themselves. Doctor?s are cruel! On my way home, I was thinking this is and has been the most beneficial place for me. If I?m in a support group, it is important that it is POTS. So thank you to everyone who dedicates countless hours designing and doing upkeep on this great website. Thank you to everyone that visits and comments on this website. For all of us that can?t start a support group and don?t want to see a shrink, this is a great therapeutic place to be! Steph

Funny thing, I lost my card and didn't write it on my calendar book. I just got off the phone with Dr. Grubb's office and they said they had just cancelled my October appt because Dr. Grubb is going to be gone and they had just sent me a notification card saying that. I asked if I could reschedule and I would take any holes they might have. So it looks like I'll be in Toledo seeing Grubb on August 10th. I will probably bringing my kids to this appt so they can meet some of our Ohio family too. Maybe we can plan a POTS picnic? Steph

I would love to meet you guys! I probably won't be back to Toledo until October when I see Dr. Grubb. Although if I can swing it, I would like to take the kids back to Ohio this summer to see family. So if I don't make it until October can we plan a get together then? Steph

Rita it's nice to meet you. I am sorry about the multiple diagnosis. I have known two people with lupus and they struggle. My ex-boyfriends sister had a fast progressing MS diagnosis, hit her when she was about to graduate from college. Anyway, I think many of us with POTS have wondered about whether we have those 2 illnesses. I think many of the symptoms are similar and make you question what you really have. I feel that me answering your email is out of my league. There are many others that are more qualified here than myself. I don't mind talking to you and offering your reference sights. But Michelle Sawicki or Mighty Mouse are the most qualified to answer your questions. I don't want to mislead you or give you the wrong advice. I'm glad that you've found this website, there are many very good people here that can give great advice. Feel free to email me anytime. Steph

I agree with both M?s Are you taking a beta-blocker yet? (I'm asking early in case you don't read my long ..........post. I apologize also for straying a bit in my post. First of all welcome to this website, you'll find a lot of great people here! Second as a single mom and an employee that works under an employer that promotes sexual harassment I've gotten a little bit cynical about life and distant with personal relationships, what I?m trying to say is I tell it like it is so I'm apologizing early in case I say anything harsh or offensive. Third, let me just say as a POTS/EDS/OH patient that I will not let any of that get to far in my way, it might delay life but I won't ever let it put me off completely. I have a determination that hopefully will never quit and if you tell me don't or no, that just fuels my fire! I'm a full time single mother of 6 children, I work full-time and I used to take classes half time. Before I got POTS, I would only sleep 3-4 hours a night because I was that busy. I've had to put my classes off for the past 2 years just because something had to give. It couldn't be the kids and we need income, so school was put on hold. I'm feeling better for the first time in 2 1/2 years and am thinking about resuming classes very soon, maybe even next week. I read your post and I'm truly sorry that what you are experiencing is such a life adjustment. It is hard to be a healthy athlete and fulltime student with a life one day and have it taken from you the next. But you must never give in or up! If you want to go to law school then do it. There are people in this world with worse obstacles in their way and realizing their dreams. You can have bad days and people here are great about sympathizing but you must never, never give up! Dust yourself off, get up and jump back into the arena. My 14-year daughter has been ill for over 2 years with stomach problems. On her bad days she lays on the floor crying with stomach cramps and spends half the day in the bathroom with diarrhea. The doctor's think that she has irritable bowel syndrome based on a 10-minute history. Well, I think their wrong and I'm continuing to seek answers for her. She is a great athlete; at baseball tryouts I would have a couple of different teams calling her and each of them trying to talk her into playing for them. She has been the only girl 2 years a row in middle school that played tackle football with the boys. Right now she's too sick to play but she's already talking about wrestling in the summer. When my daughter wants to throw herself a pity party and give up, I sit down and tell her stories about people that have it 100 times worse then her. About a little girl that my son is acquainted with and dying of Cancer and might never leave the hospital. Another 7 year old that I know about from an acquaintance at work that was just diagnosed with a fast growing brain tumor and only has 6 months to live. About diabetics, renal and chemo patients those are things we discuss. She has a good idea because she has been with me to the Hematology clinic treatment room for my IV iron therapy and she has seen first hand all of the really sick people. Three things that I'm trying to say based on that story are: 1) if you don't believe what the doctor's are telling you then your probably right and you need to keep searching for the right doctor to help you. 2) You must have the drive and desire to accomplish above any obstacle that might be thrown your way to continue. 3) There are people out there that have bigger struggles. What we have is a chronic illness and yes it sometimes gets us so far down that we have to take a break and seek some praise or sympathy from others, but mostly we need a good kick in the pants to get up and fight for what we want. You can do it. Keep asking questions. Try different things that might help like medications or if you have POTS there are several little tricks you will learn here on this website. And please try to keep a positive attitude and there are people here at this website that will help you with great words of encouragement and understanding. I?m sorry, I?m not that good in the sympathy department, I?m not a bad person just have been through to many of life?s lessons I think. But I?m there for you or I wouldn?t have taken the time to have written this. J POTS = positional orthostatic tachycardia syndrome or postural tachycardia syndrome EDS = Ehler's Danlos syndrome OH = Orthostatic hypotension Thx for listening to my soap box Steph