bebe127

SnowDrifter, Sorry you are having to deal with this. I know it can be such and pain, not to mention frustrating and sleep is so important for everyone. I too have difficulty sleeping. I do take rather long naps in the afternoon, and I'm sure that doesn't help me in the evening when it's time for bed. When I take naps though, it seems that this is the only time that I get about 3 hours of continual sleep. I usually fall asleep and wake in exactly the same position. I have vivid dreams as well, during my naps and usually in the early morning hours it seems. The only difference with me is that I don't have trouble waking and getting up in the morning. I'm usually up around 7:30am although this daylight savings Monday bites In the evenings I go into bed, but can't fall asleep and end up watching Netflix until all hours (the extra stimulation probably doesn't help either). Even when I do fall asleep, I toss and turn, waking of course with each turn. I also have night sweats frequently. Sorry, I don't have any answers except to say that in the past, excersise seemed to help me fall asleep and stay asleep. I've just been too lazy to start up my exercise routine as of late. My husband excercises routinely and about two minutes after his head hits the pillow, he is snoring (sometimes, I just want to kick him ) Hope you get some rest soon!

Kitt, If I click the very first link I posted it all goes well. Don't know if it is the servers or whatever, I'm fairly computer-illiterate unfortunately! The second link that you provided takes me to the exact article that my insurance sent me. Apparently, my insurance now has something new called "Medical Desicions Support" and I can go online and tell them what I was diagnosed with and they (a team) puts together a packet with a bunch of info on the dx., illness, syndrome, and whatnot. It is quite helpful, plus they have a real person you can talk to. I wish I had this 3+ years ago. As I stated above, I got more information on POTS through this article and others they sent me than I did speaking with supposed "specialists" in the field of POTS. Now, hopefully going to move forward on being tested for MCAS. Plus, in the new program that my insurance includes is a list of specialists in my area. I'm quite excited Glad you found it helpful

Kitt, On the link that I posted above, the first page that comes up is the abstract. There are subsequent tabs for full text, pdf, images and references. I found the article to be quite informative.

I posted the article because after reading it, I found that I learned more than in the almost four years I've been dealing with this and was hoping that it might be helpful. Even the "specialists" that I've seen including the doctor that originally dx. me didn't give me even half the information that was in this article. As with anything else, all is subject to interpretation and we can take what we want (that might help) and throw out the rest. Many dr.s I've been to have told me to eat more salt and drink more water as the "standard" in treating POTS, along with the ever popular exercise more. I've tried all three and none have helped me personally, but as far as other people, it has helped them tremendously and I'm so glad for them. All of us are different and with such an illness with such varying degrees and symptoms, I think it's important that we stay vigilant in finding dr.s that will work with us and attempting to find ways to improve, whether it be by pharmacologic or nonpharacologic means.

So true, thanks for sharing!

Here is an article I received from a program that my insurance includes. Haven't read it in its entirety, but looks interesting and comprehensive. http://www.mayoclinicproceedings.org/article/S0025-6196(12)00896-8/abstract

Thanks for your response NaomiSpellman! I'm so sorry that you are dealing with all the turmoil that illness can incurr. I've left the ball in my cousin's court. I think she is back in the states now. I too don't like having others in my house as I seem to think my house has to be spotless and I just don't have the energy most days, except if it is to entertain those that truly try to understand my predicament and don't really care if my baseboards are clean or not . We'll see how it goes. In all honesty, I don't really care at this point. I know it might seem selfish, but I just have to think of myself and my family at these times. I only have so many "spoons" and I have to reserve enough for my immediate family, ie: Big Handsome and children. I really don't have the energy for much else. I just accept that some people won't understand and that is ok. My Big Handsome and my children (bless all their souls) so try their best to understand and keep me grounded. They also are so supportive of me and my illness, even though it can be so frustrating for them at times. I really am truly blessed. I might be helpless at times, but I am never hopeless!! Hope you are well today and my wish is that you are relieved soon. Many blessings to you Bebe

Seattle Rain, I know the road we have to take in finding out what is wrong can be a long one. So sorry you are having to go through this. Is there any way you can see another cardiologist or an electrophysiologist? Maybe even start back at the beginning? I've had EKG's, treadmill stress test, sonogram on arteries, CT Scan, sonogram on heart, holter monitor (21 days), and TTT (I think that is all) and through all that, they said that my heart is in tip top shape. I still have chest pain/discomfort most every day though. I even had one doctor tell me that my chest pain/discomfort had nothing to do with my heart, but he had no explanation for it. Try not to give up. Only you know how you are feeling and if you think/know something feels wrong, keep up the search. Good luck and I hope you find some answers and relief soon. Bebe

Thanks for clarifying that Alex!! So many times, with me anyway (as a person who rarely went to the dr. before all this) I was taught from a small age to trust dr.s, after all, they have had all this training and schooling and they must know more that I do, although I am slowly realizing the reason "they" call it "practicing medicine". I just trust that they know more than I do and in turn, end up doing whatever they tell me to do. I have learned the hard way to research as much as I can, although, sadly, my research usually isn't done prior to taking the meds! Like I said, I just blindly trust the dr. that is prescribing and don't ask too many questions. Stupid on my part, I know. I learn as I go, and as a result of my experiences, I'd like to think I'm a bit smarter now about me and my body and my reactions. I just wish that dr.s wouldn't put us all in the same little box. After all, we are the only ones that know us. We live with the effects of this illness day in and day out, and no one, I mean, no one knows us better than ourselves. If something doesn't feel right, I truly believe that it isn't right and there must be an explanation. The real question is, can we find a doctor to help us in our journey back to a normal life? I don't know, but what I do know is that I will never give up. I might be helpless at times, but I am never hopeless! Everyone is different and we all require different protocols. I say, if it is not broke, don't fix it Conversely, if it is broke, find, by whatever means necessary, to fix it.

Thanks Joann, I guess you are right, but I honestly would rather pay for the testing, even out of my own pocket than to just have a pill pushed on me that might or might not work and might cause more problems than good. I too think that if the dr.s were the guinea pigs, they would think twice about prescribing certain meds. I guess that is just where most of us with this illness fall, we are guinea pigs, whether we like it or not BTW, that particular dr. that prescribed the Celexa didn't even try anything else or suggest anything else. He was one of the many jerks that responded with, "You've got a mild case of POTS because you don't faint, maybe you should try a dr. closer to home and consider seeing a therapist." This response was from an EP that was supposedly a specialist in POTS!! UGH! Truth is, we have to be our on advocates and try to educate ourselves as much as possible. The point is, we just have to keep trying!

mydoggielovesme2 and CMReber, thank you for your kind words, and CMReber, my sympathies as well for the loss of your grandmother. mydoggielovesme2, Just wanted to let you know you are not alone in your feelings. I had issues with my siblings as well. It's hard when our parents live so far, especially when they are in need of care. Just as a side note, there is something called "The Steven's Ministry" that is run through the local Methodist church. I don't think you need to have any affiliation, but they have free, trained people that are willing to come and help at the home. I only mention this because my father's doctor suggested this to him while my mother was ill and he had to work and none of us kids were able to get out there to help. Just a suggestion. Hope everything works out for you and your in-laws.

Boymommy, I am fairly new as well and this is my first experience posting on a forum too. Welcome!! I have found this site to be so helpful and I'm so glad I am on it; I wish I had started way back when I was diagnosed. It is so encouraging to see and hear that there are so many out there that know what I'm going through and that I'm not alone. This illness can be so lonely at times especially when family and friends just don't seem to "get it". It is nice to have a place to go to either ask questions, get answers, just vent, or share victories. I am so thankful for this site!! I say...keep on posting

Altruism, I think it is important to remember that everyone is different and reacts differently to different meds. I'm sure I'm not telling anything you don't already know where that is concerned I agree with cupcake, if you find that it is helping, then stick with it. I for one, didn't have the greatest experience when I was put on Celexa. I asked the dr. what I should expect, and he told me nothing, I should feel like my old self. After a few days of taking it, I found myself on the bathroom floor sweating profusely (I mean completely drenched), I felt like I weighed a ton and couldn't move, and it felt as though electricity was running through me. It was horrible, luckily my husband was home. It was so scary for me and for him. I called the dr. and he acted like it was no big deal, said that none of what I was experiencing were normal side effects and to just stop taking it and resume a few days later on a lower dose. I did what he said and I still felt worse. I admit, I didn't take it long at all and have read that it can take a month or more to get used to and begin to work. Maybe if I had given it more time? I am now on Xanax and I have found that that works really well for me. It's an old medicine and I haven't seen it on any medication warning commercials as of yet It is fast acting and I can take more if I need to without having any problems. I also had a dr. prescribe Prozac even after I expressed my experience with the previous SSRI, gotta love dr.s that listen to you!! She also put me on Buspar, which didn't do a thing for me. I have a question about SSRI/SNRI's though. I know that the SSRI is used for serotonin. My question is: What if your serotonin levels are fine? My dr. at the time, didn't test my serotonin levels (I really don't even know if they can). But why would any dr. just prescribe anything without really knowing if that is what you need or if your levels are fine. I guess they treat you based on what your symptoms are, but I've often wondered what happens if you take an SSRI to increase your serotonin if your levels might be fine. Is it ok to have more serotonin than you need. Am I making any sense at all?? I don't really know that much about all this, I just know that I didn't enjoy my experience the first time and I'd like to never have it again. Again, Altruism, we just have to try to do what is best for us and what seems to be working at the time. Hope things get better for you soon On the brighter side, I'm glad to see that at least you are on the road to finding solutions. Best of luck to you

Mydoggielovesme2, I'm glad you chose to vent, it's better to get it out than to keep it in. Please try not to feel selfish. When we are dealing with daily health issues, it is so hard to focus on other things when our own symptoms get in the way. It seems as though you have a lot on your plate to begin with. Does your husband have siblings that could possibly help out? I was in a very similar situation although it was with my parents. My mom had been sick for seven long years (after a botched hernia surgery). They lived halfway across the country and before I got sick I would travel with the kids in toe to help out when I could, usually a few times a year. After I got sick, I couldn't travel as often and had to have my husband with me which of course, like you, had to work around his schedule. We just did what we could do when we could do it. Sadly, my mother passed away this past fall due to her ongoing illness related to the original surgery. I have had to deal with regret and guilt. You have to remember that you are ill too and sometimes, as much as we might want to, we can't always help in the way that we would want to. I know the feeling of failure too, but hopefully they are understanding of your illness as well. I do hope that something comes along for you in the way of helping out. Blessings to you.

Honestly, I've only read about how he had to quit the Wiggles due to POTS, I had no idea that he had recovered. Would love to know how too

I enjoy reading as well. I usually have about 5 or so books going at one time, depends on where I am in the house (I have books stationed everywhere) Some are for enjoyment, some for information, some self-help. I spend lots of time on the computer. I also homeschool and I enjoy creating curricula for different classes for my children. Currently working on a class for Art History. I also teach an hour class one day a week/2 semesters/12 weeks at a time. Currently teaching a poetry class. I really enjoy the researching, planning and creating the class most of all. I enjoy scrapbooking as well. I make my own books out of any cardboard I can find. I mostly do mini or smallish type books that are themed as opposed to a family album of sorts. This way I know that I can finish what I start. I watch Netflix a lot. I love to spend time with the hubby and kids and we enjoy laying out in the sun by the pool. I also blog and enjoy writing.

I'm like Angela and k&ajsmom, long time smoker with hubby that smokes too. Sometimes I think they do make me feel a bit yucky, so I've cut back a lot. Have my morning few and then don't usually have too many during day, then when hubby comes home, I have a few more. I smoke much less now though than I did. I don't really feel that they make a difference one way or the other. I do want/need to quit, but it's hard with having another smoker in the house. We don't smoke indoors either. I had an acupuncturitst that was using acupuncture on himself to help him to stop smoking. He said he had done some research and found that in small doses (don't really know what that means exactly) nicotine can be theraputic. I am not condoning smoking, as I think it is a nasty habit and wish that I could quit.

I really think that for me, the nausea comes from POTS, but the no appetite comes from meds. It's a sickening cycle!! Pun intended

linda, I was dx in 2009 with POTS and I have to say my worst symptom at the time was anxiety-panic-like attacks (in fact that is how this all started with me and then I was dx via TTT in 2009). I almost became an agoraphobe! One thing that really helped me was Xanax (I'm on .5mg 3x/day). Previously I had been put on Celexa (SSRI) that I did not tolerate at all. Then, I was put on Buspar and Prozac (SSRI). I never took the SSRI--gotta love how doctors listen to you and your previous experiences!! Do they even bother listening or reading what we write on all the paperwork they make us fill out? It wasn't until I went to a new GP (have had him now for a few years and he treats a few other POTS patients) and he put me on Xanax. Said it was fast acting and a tried and true medication. Quite frankly, I'd rather take an old medication that's been on the market than to try some newly placed med where they don't really know the long-term effects). I really feel that it has made all the difference in the world. I can even double up if necessary if I know that I will be especially stressed that day (ie: driving) and I double up sometimes if I just feel more anxious than usual. I personally have found this med to be most beneficial. Although, keep in mind that all of us are different and respond differently to drugs. I really think that Xanax has made all the difference in the world for me. I am always careful in how much I take as it is a controlled substance and I suppose some people can become addicted. Always talk to your dr. about anything you might take. Hope you get some answers and begin to feel better

P.S. I just have to giggle when you say you're seeing Dr. Tinkle

So glad to hear!! Hopefully you will get some answers soon Sending well wishes your way!!

Orthohypo, I am so sorry you are having to deal with this. I know that offers of trite words aren't going to make you physically feel better, but sometimes it does help to know that you are not alone. I agree with Momtogiuliana in that it is good that you are trying/forced to stay active, it does help. Rest is just as important. I too always feel worse if I don't get myself up and moving around. I know it can be so hard. I also agree with breathing exercises and meditation. I think yoga can be beneficial as well, there is just something so relaxing about the slow, stretching movements. I also journal, write poetry, and began a blog just to get all my feelings and thoughts out of my head and put elsewhere. I find that it helps me to relax. I know it is so hard to wait and wait and go to so many dr.s only to be deflated when tests come back normal and dr.s don't really know what to do to help you. It seems as though you are fairly new here, welcome. Please try not to feel as though you are complaining. Everyone is different with varying degrees of illness and I think that is so important to note. Try to keep fighting and searching for answers. A book that has helped me is, Coping With Chronic Illness by Wright/Ellis. Hoping you get some answers soon and begin to feel better. {{HUGS}}

Kalamazoo, I am a pillphobe too. My husband says I have self fullfilling prophecy as I always read about the side effects and if there is some whacky thing on there, I will experience it! I get really anxious taking any new medication, especially since I've had some negative reactions in the past. I try to take any new meds on the weekend when hubby is home in case anything were to happen. I take Metoprolol 25mg 3x/daily. I have never had a problem and I've been on it for about two years now. I also take Xanax which, I think has helped me tremendously. I know just how you feel. If you have any questions about your reactions don't hesitate to call your doctor. Sometimes a call to the pharmacist can help as well just to ask if what you are experiencing is "normal". Hope you get some answers and feel better soon.

A bit of a correction, The MD/Holistic dr. that I was referring to doesn't take insurance for the visits and such. The initial visit is $350 and subsequent visits (and she does email visits) cost anywhere from $50-$250 I think depending on the time spent at the visit. I do believe that insurance does cover labs and such. I don't think it's a hoax at all (I know a few ladies that have been to her for various reasons and have all had positive experiences). I just wonder why she doesn't accept insurance if she is an MD. Maybe the office doesn't want to deal with all the red tape. I can surely understand that, I hate dealing with insurance companies too! And that is not to say that I couldn't possibly send a claim in on my own and see what happens. I've heard really good things about this dr., and like I said, she tests for everything under the sun. Here is what her website says that she tests for: Additional tests ordered might include a detailed vitamin, mineral, and nutrient assessment to determine any deficiencies you currently have. You will learn the significance of any deficiencies and what to include in your diet or supplements to replace them. An extensive analysis of your digestive tract includes information such as digestive enzymes, inflammation, abnormal bacteria, yeasts or parasites, and a lack of protective bacteria. Saliva or blood specimens may be ordered to evaluate female hormones, adrenal (stress) hormones, or thyroid hormones and antibodies. Urine tests can determine presence of toxic heavy metals. They can also reveal levels of brain neurochemicals to target treatment and approaches. Blood tests can be ordered to evaluate food allergies and sensitivities. None of my previous dr.s have tested for these things, nor have they ever suggested me being tested. I think too, that if she can find something through these tests that can help me find the root cause or at least get closer to the problem, there is a better chance of finding a better protocol. And if that could happen, I don't really care that she doesn't take insurance. It also says on her website that: Often patients come who have chronic problems for which traditional treatment has been ineffective (such as fibromyalgia, chronic fatigue or multiple symptoms without a diagnosis), or for which they prefer a more personalized or natural approach. I think that it certainly is worth a try. Although, I will reiterate to contact your dr. if you intend on taking supplements and/or herbal remedies especially if you are on any type of medication already. Be well

Akgirl, I am in much the same boat as you. I am following dr. orders, and can function a bit better now, although not too sure if it is the meds, or I'm just used to feeling like crap and have just accepted it. I did try acupuncture shortly after I was diagnosed. I am friends with the wife of the acupuncturist and when he heard of my plight offered the sessions to me. I began with twice a week, but only went for about six weeks. I wish I could've gone for a longer duration, but my husband's work schedule didn't allow at the time (he has to take me most places). I didn't really see too much improvement, although I really think that it takes a while of consistant visits before any difference is seen. I have friends that have seen an MD that has a center for Holistic Healing near me. I guess she works with western medicine as well as alternative medicine. I have heard really great things about her. She begins at the beginning and is interested in finding the root cause instead of just treating the symptoms, although I think she treats symptoms while the process of investigating what is going on. She begins with an hour long consultation and then does bloodwork. I've heard she checks for everything under the sun. To my knowledge, every time I've had blood taken, I've only been tested for the regular stuff, CBC, etc. She doesn't accept insurance, which isn't a deal breaker for me, but I often wonder why these types of dr.s tend not to accept it. Anywho, I'm seriously thinking about going to see her. Husband is not too thrilled, but I think at this point, I'm willing to try anything. I do think too, though, that care needs to be taken when trying any supplements or herbal remedies, especially if you are already on medication. Always consult your doctor. Much luck to you in finding relief and answers