briarrose

I hope you tape this years video, I can't make it that early in July. How much are videos and where can we order them from?

Thanks Merrill Yep I'm going to have a long list when I'm done. I will have it out by the end of next week. We have a lot of kids functions still this week, last day of school tomorrow. Funny, I wouldn't have thought of the dentist But great idea, they count too. Wonder why he commented about the eyes? What was that suppose to mean? What color would they have been? I'm asking because this last week mine are red. I look like some teenager that has been smoking weed and no I don't I think my eyes are going to be permanently blood shot. I know that when your eyes are yellow that indicates jaundice. hmmm...

Great news! I didn't know, when is it and who's speaking? steph

I'm not sure what single-like exactly means? In one joint or overall body joints? But, here is my experience with joint pain. It has been a problem for over a decade for me. I have been to several rheumatologists. I even went from Oregon to New York to see specialists. They tried numerous medications on me. They just didn't have an answer. Joint pain was so bad for me a year and a half ago that I missed several days of work over a two month period. I was taking narcotics for some relief. It got so bad that it felt like someone was driving nails into my elbows and rail road spikes into my knees. Last summer Dr. Grubb started me on Neurontin. What a lifesaver. It almost always completely relieves me of my joint pain. It has been a wonder drug for me. I went back and asked my doctors why they didn't put me on such a simple drug, most of them say that they didn't know it would work, they give it for diabetic pain all the time, they didn't think it would work for POTS. On that note I have heard several references to dysautonomia and diabetes. I started with severe joint pain 10 years before I was diagnosed with POTS. I at times had episodes where my whole body would hurt and I would just lay on the bed for days unable to move. I thank god everyday for Neurontin! steph

That's great news! Thank you for keeping us updated. We will keep her in our thoughts and prayers ! steph

Great idea but I agree that it's a huge expense. It would be cheaper to buy a box of CD's and copy it on that. Most doctor's offices have computers. We have training material in our department that the doctor's read at work. However I just had a thought. I know that our ED doctors buy audio CD's of emergency medicine to stay sharp on their skills. We should contact that company and ask them to please do a special segment on dysautonomia and POTS. steph

I know that I already posted but I just wanted to stress what a lifesaver Neurontin was for me. I would probably be addicted to pain killers by now without them. steph

I think you should show her this website and your post. You can lead a horse to water but you can?t make them drink. But she would be foolish not to see how much you care and how concerned you are. Does she have a doctor that she sees for her POTS? Have you been to an appointment with her? She has to be able to care for herself, your support is a large comfort I?m sure. I find it most helpful for someone that knows my illness to help me when I?m very symptomatic by guiding me through my brain fog. Reminding me to try certain medications, etc. What makes you think that she doesn?t believe your sincerity? (I can?t believe I?m about to suggest this but have you two considered going to counseling for her chronic illness?) 3) WOW, Cool! I wish I had an immediate answer. Maybe someone else will be able to tell you where to start. We certainly need all the help we can get. The best piece of advice I can give you in general is to keep a clear open channel of communication. Never try to guess what someone else is thinking, just ask them or tell them what your thinking. I suggest you go back through the forum here and the NDRF reading some past stories. You sound like a wonderful person and anyone would love to have a friend like you!

Nina I'm sending good thoughts yours and Stephanie's way. I hope things work out for her and she holds on. She's very lucky to have you too support her! steph

Be Persistant! Call Dr. C's office and talk to a nurse, make sure you nail her down about calling you back. Call the emergency department back and tell them you got home and they have cancelled your follow up appointment, ask them to send your chart notes and see if they will intervene to help schedule an appointment for you (I've done that for people that call back to our emergency department.) OR demand that they give you another cardiology POTS specialist referral. The emergency department has to give you a follow up referral. IMPORTANT - Find a decent primary! This one definitely isn't cutting it. Get the FMLA paperwork started. When you talk to the nurse at Dr. C's office, tell her that you must have it filled out and either drop it off or have it faxed to them. Ask her when you can pick it up. steph

I hear the word counseling and I think of ***** stories that I?ve already heard. I think of Laura Hillenbrand, it took her going home to doctors and therapists that knew her to take her symptoms seriously (my god she wasn?t even functioning and they didn?t believe her.) It took a psychiatrist to tell her medical doctors that she is truly sick. What is wrong with this picture??? I ask you is it really us? Or is it them? I think of all the POTS patients that have been told that they are nuts for 10+ years before they find a competent doctor to listen to them and finally get a diagnosis. Why should I see a psych doctor when I know what?s wrong. What I REALLY need is someone to listen and help me with my MEDICAL complaints when I?m too sick to stand or even crawl to the bathroom. I need a medical doctor to believe me, that?s all I need! As for acupuncture, I?m all for it. My back went out last year right before my first visit with Dr. Grubb. I took Valium and pain killers for several days without relief. I had never been to an acupuncturist, so I was skeptical. I went 2 days in a row. I couldn?t even walk in, I was walking hunched over. The second day they did acupuncture on me, I was almost 100% better. I walked out of the office even. Wow! I believe now! If you haven't read Laura's story - here it is http://www.cfids-cab.org/MESA/Hillenbrand.html

I second what jsb said. I just had an event monitor again for another month. I have PAC, PVC's and what you just described as non-sustained ventricular tachcyardia. To me it feels like a short flutter and it makes me cough or unable to breath for the few seconds that it's fluttering. You should talk to your cardiologist about it. He/she might suggest an event monitor to see what your heart is doing. steph

I've posted about Neurontin many times. I continue to say the same thing, if there was one drug that I had to choose from out of all the ones I take, it would be Neurontin. It's the first medication that has given me relief from pain. Neurontin is kind of a multi-purpose drug. See attachment - http://home.tampabay.rr.com/lymecfs/nfaq.htm I haven't had any side effects from taking Neurontin and I am extremely sensitive to medications. steph

Michelle and Nina For the record counseling can be a good thing for some people. I agree that it helps teach us things about ourselves like limitation and coping. It's a great tool when applied at the right time. I've been to counseling recently, believe it or not. My counselour suggested that I enroll in school and cut back to 24 hours a week at work. Get loans to live on for the next few years. I think this is great advice if I was healthy and not supporting six kids on my own. I would love nothing more than to go back to school and have a real career but I have 5 more years before I get my children off to college and that is a priority right now. Maybe eventually I'll throw myself into debt, throw the dice and take the gamble that I can make it through 4-6 years of school on a limited income. School is more exhausting then work, as many of you know.

I almost posted this topic last week after my primary told me that he suggests counseling for all his chronic illness patients, especially when they have the anger that I have. Please understand that I rarely go see my primary. I have to be dying in pain or just fed up with my symptoms not knowing what to do next. Or have very new, multiple and scary symptoms. This has been the case. I have had many problems with my vision for the past 2-3 months, among other neurological symptoms. I went to see him because I was starting to think that I was losing my vision. He told me that it was all POTS, even though when I talked to the NIH and they hadn't heard of the complaints that I was having. My primary told me that I deserve the medal of valor for coping with my copious symptoms. I don't want the medal of valor; I want a little relief please. He preceded to tell me Friday that because I have so much anger still that I might want to try counseling. He also put a guilt trip on me because I haven't tried the last few drugs that they are using to treat POTS - Straterra, Wellbutrin and Ritalin. Well, he?s not the one that is extremely sensitive to medications and has to suffer side effects for sometimes days afterwards. I told him that I'm angry at the medical community for their lack of efforts and speed to find out simple things about this illness. They can't even put all of the symptoms together and are in no hurry to do so. I told him it's the pharmaceutical companies that aren't interested in developing a POTS drug because it won't make them money. I told him it's the pharmaceutical companies that won't accept POTS as an orphan illness, which was approved a huge amount of money by the federal government for research (I believe last fall.) The administration took POTS off the list of rare illnesses. I told him it's the doctors who pat us on the head when they think we need reassurance when we are really desperate for something to be done and don?t realize how sick we really are. I told him that it's all the people around us that need counseling to accept their inadequacies not us. I feel that it's a normal process to experience the emotional side of this situation. (Kind of like when I was going through my divorce, they wanted to give me anti-depressants and I said no it's normal for people to have some depression, fear, grief and anger in the situation I was in. Why is it that we have the pill pushers for everything and they can't accept our decision in some areas to not take drugs?) I told him it's my anger that keeps me going; otherwise I would be a vegetable in bed by now. Please understand that I?m not suffering from depression but anger from incompetence and lack of understanding because they don?t walk in our shoes. I went to the doctor last year multiple times for severe hypotension. I almost had to beg for fluids because I knew that I wasn?t retaining and I couldn?t humanly drink enough water. Last week when I had my MRI it showed spots in my brain that were commonly seen in people that suffer from chronic low blood pressure (kind of like mini strokes.) HMMM??.Why did this happen. It could have been prevented if they just listened to me. Do I have a right to be upset? I don?t have a medical license and I can?t prescribe myself everything I think I need. I will get past this but I think my reaction is normal considering the circumstance. What do they want, for us to just be complacent and accept what ever this illness throws at us. I?m a fighter not a quitter, been that way my whole life. Not going to change my personality now just because I?m not acting the way someone wants me too. Sorry to go on guys.

I like calypso's explanation, it would make more sense for me since I had hair loss before I started any of the POTS medication. The only thing I ever took before 2 years ago was my synthroid and pepcid. I hated and even refusesd to take meds. That all changed when I developed POTS. I still hate taking so many drugs though.

Katherine Thank you for your email. That is great news about Vanderbilt. I'm glad they realize how problematic this is for us. Who is your doc at Vanderbilt? Maybe I'll call Bonnie and see if she will accept our data. Thank you for the questionnaire form too. I actually had that one from last year when I applied for one of their studies and I also have one from the NIH. I will be compiling those two, plus coming back to DINET and NDRF to pull peoples past symptom complaint lists. I will at some point ask people to either email me a symptom list or post it here, which ever they're more comfortable with doing. I will need everyone?s help to make this a successful and complete list. I will remain diligent about this project until I get it done, no matter how I feel. Maybe it will be therapeutic to help curb my anger at the medical community for they're lack of being able to help us, it beats counseling Steph

I agree with all the other posts here. Have a good heart to heart with your hubby and know how he feels instead of guessing. As equally important, tell him how you feel and what your thinking. Find a good doctor. Take your husband with you so he has a better idea what this is all about. It's not just you, he's involved to. Debt - Do you have a consumer credit counseling in your area. That might be an answer of stress reduction. steph

I don't remember the previous post on this topic, but I had increased hair loss prior to being diagnosed with POTS. I made an appointment with my primary a year before the tachycardia started. She gave me some song and dance about how people lose so many strands of hair a day. I tried to impress upon her that I could take hand fulls out of the back of my head during a shower. She didn't believe me because I couldn't do it during my office visit.

I can't answer you about the damage to your heart, sorry. I just don't trust doctors yet to give me an honest answer about some things. They say that POTS won't damage your heart. I have very low blood pressure almost 24/7 now. I occasionaly have a run of high blood pressure. I'm dizzy most of the time. What medications are you on currently? Have you contacted your doctor about this yet? steph

Pam Great! Would love your help. I will contact you at the end of this week or middle of next week when I'm set to go. Thank you steph

Sue Thanks for the humor today, that is hilarious! steph

Nina You know that your're our support hero! Sounds like it went pretty well considering. At least you didn't drop during the Vows Congrats to your sister. steph

Welcome I'm glad you found this great website, it has been a lifesaver for many of us! People are very supportive here and you get lots of information. I always suggest going back over other peoples posts, I find it incredibly helpful. Good luck on your FMLA paperwork, I know that it saved my job. Good luck on your clinicals. Steph

I'm sorry that you have to go through this. But you know there are things that can help treat POTS. You already have a head start foundation of knowledge so she is better off for it. You probably know more than most doctors and you can educate your daughter. Don't forget to direct her towards DYNAkids. It's a good therapeutic place for her to go and it is wonderfully written so that she can understand and relate to it. http://www.dynakids.org/index.jsp I fear what you are going through, as my kids are exhibiting symptoms too. I think it's just a matter of time. Let me know if there is anything I can do for you. steph