friday7

I never tried compression stockings but I hear so many people hear saying that they use them and it helps. I had wanted to try them once but my doctor at the time was unsure if it was a good idea for me. She wanted time to check with the CFS specialist I was seeing when I was diagnosed with POTS, but I can't see him anymore since I cant' afford it. I am being treated by a new GP now. I just started seeing her, and she just learned about POTS from me. I'd like to try the compression stockings but I'm a little afraid now. Has anyone that hae used compression stockings ever had trouble with them making you feel worse? Also, I read on WIKI- "Nonetheless, there are several crucial cautionary steps that need to be taken before self-prescribing such medical hosiery! No.1 is the person's ABI (Ankle Brachial Index) for both legs. It must be >1.0 to wear such stockings. Otherwise, they may obstruct the patient's arterial flow (the ABI indicates how unobstructed one's leg and arm arteries are. Any competent Doctor or nurse can measure & calculate one's ABI).No.2 Fit. It's crucial that such hosiery (Stockings) be properly sized! The compression at the smallest part of the ankle must be the highest with a 70% reduction of pressure just below the knee! In top clinics, vascular doctors & nurses use special pads to insure uniform higher pressure around the circumference of the ankle (smooth out the irregular cross-sectional profile.) So long as the compression gradient is 15-20 mmHG, the ABI (for both legs) is >1.0, and the stockings are the proper fit, self-prescribing is reasonably safe. " I'm unsure how to get a proper fit, and I definitely don't understand about the ABI. It says ,"Any competent Doctor or nurse can measure & calculate one's ABI"..is this true? I'd really like to try the compression stockings now that it is getting cooler. That way by the time summer comes around I might be used to them. Is there any information anywhere, about compression stockings and why they work for POTS patients, that I can print out and bring to the new GP perhaps? Maybe then she could help me figure out the proper size and ABI.

I don't think I ever had my B12 levels checked. And I know I never had Urinary MMA checked. I also get a feeling like bugs crawling on the skin. But I think that's restless leg syndrome. I usually get that when I'm trying to sleep and it helps to take Magnesium. But this other pain and numbness doesn't respond to taking the Mag, so I figure it's something else.I'll see about getting my B12 levels and Urinary MMA checked . Thanks:)

90 percent..Wouldn't that be lovely? I have improved since my diagnosis. But I think there's an important factor in getting better. And that is getting the right help. I feel I could be much better if if only I could find a doctor to treat me. Even though I have a diagnosis, I can not find a doctor who will treat me specifically for POTS. In fact that fight me when I try to get help. They dont' believe what I have to say or information I bring in. I bring in printed info from this site, that I know is never read. I think the 90 percent improvement rate depends upon, first getting a doctor to diagnose you, and then getting a doctor to treat you. Most of the doctors I've seen never even heard of POTS. It's been impossible for me to find a doctor who will treat me for POTS with the insurance I have. Not really fair when you consider if I had diabetes or another disease I'd have no trouble being treated for that disease. The only reason I was able to get diagnosed was because at that time I was able to put out a few hundred dollars to see a specialist. I can no longer afford to do this. So I can no longer get treated specifically for POTS. And of course that's gong to affect how well I do at getting better.

HI. I have had different kinds of nerve pain in the past few years. I'm trying to better understand exactly what kind of illness POTS is . I mean I know about Dysautonomia and that has to do with the autonomic nervous system. But I"m not sure really what it means. If I have POTS do I then have Dysautonomia? I went to a Neurologist before I was diagnosed with POTS. And he took some basic tests and then said I was cleared as far as Neurology . In other words there was nothing wrong with me that had to do with Neurology. I mentioned POTS but he never heard of it. He then sent me to a Cardiologist because of the Taccycardia..He didn't help either. I finally went to a CFS specialist who Diagnosed me with POTS but I can't really see him because he doesn't accept my insurance, and I can not afford his fees. I saw him the first year I was daignosed and we tried several meds, but my it was hard to pay the fee. Now my father has passed and my Mom and I are just trying to pay the rent and eat. We have no money for this doctor anymore. So, I just see a regular GP. Now I know there are certain disorders that are neurological. Like MS, Parkinson's,Epilepsy, and I know there are certain conditions like diabetes that have Neurological symptoms, such as Neuropathy. I'm trying to figure out how POTS fits in here. Is it a neurological disorder, or is it like diabetes , where it has symptoms that are neurological? The thing Is I have had nerve pain and numbness for a few years now and I have never gotten any help with them because as far as the doctor's I've seen are concerned I don't have anything that qualifies me to see a neurologist. And the Neurologists I've seen don't recognize POTS as causing these symptoms. Like I have some burning pain occasionally. It feels exactly how my father, who was diabetic, described Neuropathy. (I've been checked for diabetes and I'm hypoglycemic but not diabetic) I dont' get this pain often, Thank goodness, but it happens. Sometimes it feels like a burning hot needle just stabbed me in the foot and then it goes numb. Luckily it doesn't happen often but I do get numb toes off and on. And sometimes my legs get numb. And it is largely ignored by my doctors. As far as I've read about POTS, it is not uncommon to get neurological, nerve pain or numbness. Is this correct? Another and more troublesome nerve pain I have trouble with is vaginal and clitoral pain and numbness. This is very upsetting because I've been to the Gyno and as we've looked for Endometriosis. Didn't have it. I had a polyp, that was suspected and causing this pain but I had it removed and I still have the pain. I had my ovaries removed but that was three years ago. The only thing he can't come up with is that I"m still getting used to being in Menopause. I understand that since my Menopause was caused surgically, that it would be sudden and might be severe. But it has been over three years and I feel my body I already went through that . I went through being on HRT and then not needing it anymore because all of the hot flashes mood swings etc were gone about a year ago. I also dont feel like that's the cause of the pain because I started having the numbness a few years prior to the operation. It's just gotten worse over the years and now it also includes pain. It just seems from what I read like it's nerve pain. And since I have POTS this seems to make sense. But I dont' know how to get help with this. The doctors I see will say yes, I understand you have this thing called POTS but since I'm only going to treat what I know, I'm not going to recognize you have anything wrong neurologically. So I don't know where to turn. I guess I would like to know if others have experienced nerve pain. Especially, vaginal or clitoral,...but any nerve pain, and how have you been treated for this and by whom (what kind of doctor)? Also I am trying to understand, Dysautonomia, what is it exactly? If we have POTS does that make us have Dysautonomia and is it that normally treated by Neurologist? Sorry if this sounds dumb but I have vague ideas about this and I'm just trying to just more clear on it.

I'm so glad to hear this news. Especially for someone so young. You are right we do need to hear about the success stories. It gives me Hope and encouragement. Thanks for sharing.

Can I ask what kind of tests they did on him? When I went they did the basic tests. But I know he could have done more. He just wasn't interested and passed me on to the cardiologist. I was later diagnosed by a CFS specialist in my area. the problem is I can't see him now because he doesn't take me insurance. So right now I'm only going to my GP. She's nice, but not much help for POTS.

I went to a neurologist when I first read about POTS. He was no help. I had to tell him what POTS was, and then he thought it was just Orthostatic Intolerance. When he heard the Taccycardia part he sent me to a Cardiologist. Who in turn said I should see a Neurologist.. I also had to tell him what POTS was. I guess the thing is it depends on how much they know about POTS. Since this doctor I saw knew nothing of it and wasn't interested in learning something new, he was no help. If you found a doctor that was familiar with POTS I would think it could be helpful.

I know the feeling of being afraid to do something because I'm afraid of what might happen. And sometimes I wonder if I could be doing more, and I'm holding myself back. But at the same time sometimes when I'm feeling good I"ll overdo it, and make myself sick. It's hard to know. I think I had such a long period of time where I couldn't do a thing, that now I feel a little better but I'm used to thinking , I can't do that. Then I started to think. What if I can and thinking I can't is holding me back. The thing is most of the time it has to do with driving with me. I feel I can't go to the store, not because I can't walk around but I'm not sure how I'll be when I drive. Sometimes I feel good , but then I worry, what if I go someplace, walk around and then feel sick and can't get home. I'm thinking , maybe I'll start going out every day , just a little, somewhere where there's no traffic. Like drive down the street to the Krauser's. That way if I feel sick I can always pull over. It's not like I'm miles away from home. And that way I can get used to going on on my own again. I think that's the hard thing, you have to start with small steps and not overdo it. When I feel good I want to drive to the shore (which is about an hour away) and I really have to hold myself back from doing things like that. And encourage myself to take small trips more often instead. It's hard though. I guess you have to find a happy medium, and be patient.

AS far as I know everyone has differing experiences. In my case my BP doesn't usually change a lot until I have been on my feet for a while. And my heart rate usually shoots up immediately upon standing. But that's just me. I know some people just have a high heart rate and normal or high BP so I imagine it could go the other way as well. I'm just guessing here though. I can only speak of my experience.

Wow that is something. Good thing you pushed for the answers. I don't know much about hyperadrenergic POTS and norepinephrine levels. I'm wondering what tests do you need to find out about hyperadrenergic P.O.T.S.? I know also that they sometimes ignore slightly high or low levels for certain reasons. I still always get a copy of my tests and check out the results of my tests just to make sure. If I'm unsure I'll got to the doc and ask for an explanation,until I'm satisfied. If I'm not satisfied I'll research it more and see the doctor with my concerns..For instance, the GP I had before I was diagnosed said my BP was fine between 100/60 and 90/60. I was feeling dizzy and weak, but it was fine to them cause it was low. I then got a sodium level that was sightly low. That was fine too to them. But this bothered me because I had the symptoms of low BP. Then I looked up low BP and CFS ( which I was told I had) and found this site. I started testing my own BP Lying sitting and standing, and found out how my BP would fluctuate and get lower. Then it made sence . It must have been dropping while I was walking. I actually found myself having to sit down on the floor in the middle of Walmart one day, to keep from passing out, thinking this is not right. Anyway, the thing is most times it' s not a big thing if they say it's not a big thing. But sometimes it could be something that needs further investigating. I'm glad I investigated mine because it got me to this website,I found a doctor and got a diagnosis.

Wow that is so great. I have to watch this. It's nice to see something on TV about using the internet to research your illness. Sounds like it could be very helpful.

LOL Well at least he Googled it. That's good. Some of them just go, oh okay, then continue to ignore the fact that you have it.

thanks this is really helpful!!

Aw, thanks.

Thanks. I love cats too. I think I was a cat in another life.

If you're my serotonin and norepinephrine levels (blood/serum) are already elevated what does he say about Serotonin Syndrome? I mean I know this is usually caused by taking several drugs that increase serotonin. But I'd want to make sure that if your levels are already high that you wouldn't wind up with Serotonin Syndrome. My personal experience with this drug was bad but I have trouble with my BP and must take salt tablets to keep my BP up. If You've never had trouble with low sodium levels it might be okay on that count. ALhtough I would still watch your salt levels and BP. As it can lower your sodium levels. I'd talk about this with more with the doctor before going ahead with it. If you did go head with taking it,Id make sure to ask about Serotonin Syndrome, and keep track of your sodium levels and BP.

I'm starting with a new GP. Which I am dreading. But anyway, I have to tell her about POTS and I'm sure I 'll have to explain it to her. My experience with this is not good. Usually they listen and kind of half believe you. They understand when you say Postural Orthostatic tachycardia Syndrome. But what they understand usually is, that when you get up and you feel faint. They equal it to Orthostatic Intolerance. And we all know it is much more than that. the only problem is how to get this info to the doctor so she'll accept it as fact . I remember some time ago, a place, I'm not sure if it was here or somewhere else, had pamphlets explaining POTS and it's symptoms, that you could send for and they would send you so many to hand out to your doctors. I was wondering if anyone recalls this? or where this was? It would really help me to have something written by medical professionals to give to this new doctor. And also my other doctors. ( and a couple family members;) any help appreciated.

I was prescribed Restasis (Cyclosporine) from my eye doctor due to very dry eyes. I've been taking it a over a month. But I have noticed my BP is lower than usual. I'm wondering if there could be any connection. I read little about Cyclosporine, it is not only used for the eyes but also Cyclosporine is used with other medications to prevent transplant rejection (attack of the transplanted organ by the immune system of the person who received the organ) in people who have received kidney, liver, and heart transplants. I've also read that it is given to arthritis patients. I think the main thing is it helps inflammation. It also says- to tell the doctors about any meds even supplements as some might interfere with the medicine. My doctor never asked about my supplements. I'm just curious about this med because I was thinking of it as just eye drops and now I find my BP is lower, and I'm wondering if there's any connection. So I'm concerned about this med. I remember a few years ago three different doctors had given me meds that lower salt in the body, even though I told them I took salt tabs to raise my BP. I had to research them before I found out. By then my BP was so low I was barely able to get out of bed. Also, I am just getting a new GP. And I know I'm going to have to explain what POTS is,and I'm not sure how they are going to be with that. For instance, Beta Blockers usually lower the BP in a normal person but it can raise BP in POTS people. Now if I tell this new doctor this I'm probably going to get a yeah right attitude. But I thought if this is the case with Beat Blockers, then maybe this med, Cyclosporine, which is know to cause High BP in normal people, can also have the opposite effect on POTS people. So I figured I'd come here and see if anyone has had any experience with this drug. And if so, what effect did it have on you?

Ugh that's frustrating isn't it? The doctors just assumes you'll be lazy about it. Most people would rather not have a wheel chair if they had a choice! I had one prescribed for me when I first aws diagnosed. I could hardly get out then. I had to have my Mom push me and even then I got motion sickness. After that when I started feeling better. I kind of used it as a walker. I would push it and lean on it and then I would sit down when I felt ill. I then got a walker from my uncle that has a seat. That thing is great. I can walk around and yet I always have a seat just in case. I do such more more with it than I would without it . Oh Medicaid covered the cost of the wheelchair . It wasn' t the best but it served it's function.

I've been wanting to volunteer lately but I got problems again. I had to get surgery today..minor but still puts back the volunteering. Anyway I was looking online and I found some sites that take donations of crocheted and knitted items and they give them to hospitals, etc. Places that need them. Here's a site that it very good because it gives the names of places that accept donations and it also gives lot of patterns. http://www.bevscountrycottage.com/peds.html I know there are other sites that accept things like toys and other sewn objects. These places have a directory of a bunch of sites. http://www.craftsitedirectory.com/charities/index.html http://www.craftbits.com/crafts/charity Most of them are for crocheting and knitting but I know this one has sewing as well. http://ww2.kcd.org/staff/stringfellow/stitchforacause/ This one is unique , It involves making polymer clay bottles. http://www.bottlesofhope.org/ I just thought this might be helpful to someone looking for something to and that contribute to a worthy cause. Susan

Your son is really talented! Susan

Very nice animation. I know that's a lot of work that goes into that small clip. I'd like to see more if you have it. I'm interested in animation myself. Well I'm interested in anything creative. This is my first ever attempt at animation few years ago..It's just a silly thing I made with my cat. But i've only done a few slides shows since then for family as far as animation goes. But I do lots of creative things. it does help to have that outlet. I've been drawing and painting since I was 13. I don't have a site anymore but I have an album on photobucket so I'll share that here. http://s118.photobucket.com/albums/o88/babu357/my%20art/ Susan

Yeah when I was first daignosed I had a lot of trouble with things strobing. Still do but not quite so bad.Like if I was looking at a pattern that was too noisy it would seem to move, pulsate, Like an optical illusion. Usually that's when I was in someplace with florescent lights..those things are horrible! I was in a partial hospital program once and the lights were so bad I had to were a baseball cap to keep the light out of my eyes or I'd get sick .And if I went driving in the winter. the light of the sky coming through the trees as I drove would make me sick. I also had and still have trouble if I"m sitting in an office that has blinds. I always have to ask someone to close them or I get this strobe light effect. And I hate crowed noisy restaurants so I avoid them. So in short- sensitivity to noise and light . YES. You might make some mental notes of what effects you and try things to adjust for it. For instance,. If you're in a crowed restaurant with lots of movement around you. Sit on the side of the table where you can face a wall, if it's possible. If you have to go out for a business meeting is there anyway you can put your input in on the venue. That way you can avoid busy noisy places. I also notice closing my eyes helps. Of course if you are in a business meeting that's hard to do, but if you just say you have a headache that should be understood. Some of the things I did were, Like I said wearing the cap under the florescent lights. I used to wear tinted blue glasses to read..For some reason I heard that helps people with CFS read. And it did ease the strain on my eyes. Also sunglasses to drive helped. Taking frequent breaks helps. If you feel overloaded already, and feel people won't understand you could always tell them you have a bad headache. That way if you need to close your eyes , go put water on your face and take a break they would understand.

thank you. It's good to be able to come here and get this support..because like you said, you do feel unspoken (and sometimes spoken) judgment and pressure from others. I guess we have to learn to ignore that somehow. Which is not easy. It's great that you found something that you can do to help.

Thanks so much for the support. I don't live near Bergen County but I'll give the number a try and maybe they have something near me. Yeah that's true if the people aren't going to be understanding then I dont want to work there anyway. I found this site that you can look up volunteer jobs near you. http://www.volunteernewjersey.org/vnj/ I haven't found anything that is custom made for me .But there are a few I might try and reply to. thanks for your help.