FarmerAmy

Can anybody share any good POTS resources in the Boulder/Denver area? I currently go to Hillary Clark, PA at Boulder Cardiology. She has been kind and helpful in many ways, but we have not had success in treating my main symptoms--lightheadedness and fatigue. Does anybody have a health practitioner they would recommend in the Boulder/Denver area? I have heard there is a great POTS doctor in Denver (I don't know her name) who works with teenage girls, but I doubt she would see me since I'm 40. Any ideas??

I took a variety of drugs until I settled on Klonopin. It is a central nervous system depressant and is in the same family as Valium. I still have a hard time standing for more than a few minutes before all the blood drains out of my head. But the Klonopin really evened out my tachycardia and I almost never have chest pains or the feeling of a pounding heart anymore. I had to get my phychiatrist to prescribe it for me. I asked my cardiologist about taking Klonopin and she said it was ok with her, but that I had to get approval from my phychiatrist first. Good luck finding something that works for you!

I do not take the same meds that you do, but I have experience with weight gain as a med side effect. I took two SSRIs (Effexor then Cymbalta) and gained about 30 pounds in 3 years. I weighed about 135 from age 20 to 35 and then I started putting on weight. I complained to several doctors about this and they told me that I was just probably getting older, etc. But I know my body!!! This did not make any sense to me! My weight had always been constant regardless of my diet or activity level. I stopped taking the Cymbalta a while ago and dropped 30 pounds in 3 months with no dietary changes. The same doctors were like--"well I guess it was the Cymbalta". That made me crazy because they really made me doubt myself and what my body was telling me. I'm back on the Cymbalta and have slowly put then weight back on. I guess I'd rather be a little fat than depressed!! But my point is that I learned that my weight gain really was a side effect of the medication I was taking, even though my doctors told me that was not the case. I feel like you know your body better than anybody else and you should listen to what your gut tells you.

I am self-employed. My husband and I own a vegetable farm. I can't do any of the physical farming any more, but I do all the administrative work. (Althought I am finding that I need assistance even with that!) I work on my laptop 1) in bed, 2) on the couch, or 3) in a recliner in my office. I can't offer anything specific, but I feel like there are a lot of jobs you could do from home either on the computer or on the phone. I seem to remember somebody on DINET saying that they scheduled medical appointments from home. Maybe contact a career counselor or your local unemployment office??? Maybe they could suggest jobs you could do from home--lying down!! Your brain works, just not your body

I have had a brain MRI that showed up with nothing. I also have a lot of the symptoms your daughter has, although my visual disturbances don't seem as bad as hers are. I have trouble loosing my train of thought and often have to close my eyes and really focus to come up with the correct words. I also make a lot of errors when I am typing. And things get blurry and I have trouble reading. For me, I think all of these symptoms are due to cerebral hypoxia. None of these symptoms are bad for me if I am lying down and am well rested and I feel like I am getting enough oxygen to my brain. But, if I push it and am upright for too long, my brain function diminishes and the above symptoms appear and I get a tell-tale headache. If I lie down and rest and maybe take a good nap, I am usually restored. I wonder if your daughter is pushing things too hard?? Does she do better if she is able to lie down more? I cannot imagine trying to make it though the school day with POTS! I really feel for you. It is very difficult to have POTS myself. It must be so hard to have your child have POTS and feel like there is not much you can do for her

Thanks for the feedback everybody! I am fairly certain I don't have EDS. I am the stiffest person you have ever met!

I have noticed that I do much better when my head is supported. It is very difficult for me to sit up, but I can sit for longer if I am either supporting my head with pillows or if I can lean my head back on a head rest (like in the car). Has anybody else experienced this? Do you have any thoughts on why this happens?

My husband and I own a vegetable farm and work our butts off! I have always been active. My symptoms came on suddenly and took me from doing a lot of physical work to knocking me flat on my back.

Sorry you have been treated so poorly. Can you go to a different ER? I don't think you are going to have much success with the situation at your current ER. The doctors will not change and it will just make you crazy to keep going to them. I don't know much about your long list of medical problems, but is it possible to seek treatment at your doctor's office instead of at the ER? I have felt bad enough to consider going to the ER on several occasions, but decided not to go because I knew the ER staff would not get my situation. But perhaps your medical issues are critical enough that you really do need emergency attention. I don't know what else to say. Our medical system does not deal well with chronic illnesses. I hope you can find some doctors who are more sympathetic to your situation.

I would call the airline and explain your situation and see what they have to say. Tell them you have a cardiac condition--it is a lot easier than explaining POTS! Have you looked into taking the train? SO much more comfortable than flying!

I'm sorry you're having such a rough time right now. My advice would be to minimize contact with people who are not supporting you. They will never understand and will only make you crazy. I had my own pity party tonight. I was telling my husband that people just don't understand--even when I explain exactly what I going on with my illness. I am fortunate that my husband and my mom get it, but really nobody else does. I have found my best organizational tools to be a wall calendar or my Google calendar (on my computer or my iPhone). I hope you can find at least one peron who can try to understand you. Maybe through a chronic illness support group or church or something. You really need someone you can lean on!!

I take Klonopin and it helps me a lot. Melatonin is way too sedating for me. I sleep like the dead and it is really hard for me to wake up. Epsom salts (magnesium sulfate) are great to add to your bath.

If it were me...I would bring a blanket and plan on finding a grassy area to lie down if needed. You can rest and your friends can meet up with you later.

I don't have experience with the meds you are on. But I wanted to share my TTT experience. It was pretty awful. *But* they gave me a saline IV afterwards and I felt great! I also feel like the TTT experience was so informative and has really helped me to understand what is going on with my body. Good luck!!

I just wanted to report back. I gave the silicone a good cleaning and that did the trick! It did not occur to me that you have enough oils on your thighs to make the silicone slippery, but apparently you do! Thanks for all the suggestions!

My psychiatrist has helped me the most. He prescribed Klonopin for me, which has helped a lot. He also thinks it is important to find ways to calm my over-active nervous system. He is encouraging me to do things like yoga and meditation. My cardiologist is good and well-meaninged, but she prescribed Midodrine and Metoprolol, which I am no longer taking. I felt like these meds were just fighting my body, not working with it.

I have done IVF (unsuccessfully), but it was probably in a different order than your situation. I have had undiagnosed POTS for over 20 years. I also have fertility issues. I did one IVF cycle about a year ago and my body did OK with it, but it was not successful. I did a second IVF cycle last October. A few things happened at this time. I finally discovered that my constant fatigue was due to POTS. Also, during the IVF cycle I had some hyperstimulation (due to the fact that I produced over 50 eggs!!) The doctor did not want to do a fresh embryo transfer, so we froze the two embryos (a very low number given my high number of eggs). In November I was going to do a frozen embryo transfer (FET). I was taking norethindrone to prep for the transfer. I felt terrible on the norethindrone--severe fatigue--much worse than my normal. I was also vomiting occasionally. But I figured it was just side effects from the norethindrone that would go away when I stopped taking it. I took it for a month and when I stopped I was supposed to get my period within 3 days and then we would move on to the next step in preparing for the FET. However, I did not get my period for over a month and I continued to feel horrible during this whole time. I could not figure out what was going on and we cancelled the FET because there was no way I could tolerate being pregnant in such a weak physical state. In December I did a tilt table test. It was terrible, but very enlightening for me. Going through that test made me understand that all my symptoms from the last month or so were due to a flare up of my POTS. I am doing a bit better now, but 5 months later my POTS is still much worse than pre-IVF. I will never know for sure what caused my POTS to flare up, but I think it is from taking the norethindrone. In hindsight I should have stopped taking it when I was having all the side effects. But I had no idea that my POTS could flare up the way it did. So here's where we are now...we still have a few frozen embryos. We'll see how my health is over the coming months. (As a side note, I think there is a good chance that some of my fertility issues are due to my POTS.) If I get back to a point where I am feeling relatively good, we may transfer the embryos. But I am honestly scared to think of that right now. I can't imagine feeling better and then possibly risking my health again with more IVF business. At the same time it is very difficult to let go of the idea of having our own biological baby. But the exciting news is that we are going through training to be foster parents! (with the eventual goal of adopting) It will be at least 4 months before we are certified to be foster parents and we will see where my health is then. I would love to foster an infant or a toddler. But I can barely take care of myself right now, let alone an infant. If I am still feeling bad come summer maybe we would be better off working with an older child to whom I can give emotional support, but who doesn't need constant physical care from me. Feel free to ask any questions about the IVF process. It was a crazy roller coaster ride and it felt surreal the whole time we were going through it. Amy

Thanks for the suggestions everybody!! I will try cleaning the silicone and if that doesn't work I will try some of the adhesives you all mentioned.

I have been wearing compression stockings for the last few weeks and they make all the difference in the world for me. I have a pair of Jobst stockings that are thigh-high and have an open toe. The open toe is great, but I am having trouble with the thigh-high part. They have a silicone band around the top that helps keep them up, but not if I am walking around. I have tried wearing full-length stockings, but I can't stand having to wrestle in and out of them every time I go to the bathroom (which is about 50 times a day!!) The thigh-highs are much more convenient, but they slide down if I am moving around. I'm thinking of trying a garter belt. Would that help?? Really what they need to make is a pair of full-length compression stockings with a "trap door" like they had in the old-school red flannel pajamas Any suggestions? The compression stockings make a huge difference for me, but there has got to be a better way than pulling them back up every few minutes. Thanks!! Amy

I love taking a hot bath. I feel bad after I take a shower--especially in the morning. But I feel like hot bath gets everything flowing and I feel a bit better. I can't stay in for too long (more than 15 or 20 minutes) and I generally need to lie down for a little while afterwards. For me, it has to be a bath, though. Sitting in a hot tub is the worst! Within about 2 minutes I start to feel very lightheaded. I guess I could try to lie down in the hot tub, but the only one I ever go to is at a public pool and there isn't a lot of room.

I tapered off Klonopin about a year ago. I wound up taking a little crumb of a pill every few days to get me through. Maybe you could ask your doctor about that? I was able to finally stop altogether when I got a bad cold. I was in bed feeling miserable anyway, so I figured it was a good time to deal with the Klonopin withdrawal. I think I was in bed for 2 or 3 days and didn't take any Klonopin durning that time. When I was well enough to get up I was also through the Klonopin withdrawal.

Sonya, maybe this is a time for some couples counseling. You are really sick and you need your husband to understand and support you. Would he be understanding if you broke your leg or if you got cancer? This is a medical problem as well and you did not choose to be sick and you can't just choose to make yourself well. I have had undiagnosed POTS for over 20 years. About 5 years ago my husband convinced me that my fatigue, etc. were not normal. That is when I began my search to find out what was wrong with me. Prior to my husband convincing me, everyone else in my life made me feel like I was just lazy. My ex-husband used to get frustrated with me because I was so slow to get going in the morning. I was always late for work and people thought poorly of me because of it. Even my mom used to call me a "slug" when I was a teenager. Granted, these people did not know that I had a medical condition. But it made me feel terrible about myself. You are having a hard enough time right now. You don't need other people making you feel worse on top of your illness.

I try to visit with my niece (5) and nephew (2). Or I at least look at photos or videos if I can't actually see them. I also spend time with my animals--(dog, cats, goats). All of the above beings "live in the moment" and they help me do that, too. I also read or watch movies.

Personally I would only go to a doctor if I felt like he/she could help me. I go to a cardiologist and she is helpful, but I get a lot more help from my psychiatrist. He seems to understand nervous system issues better. I would keep looking for a health care provider who better understands what you are dealing with. Just because you have a degree (i.e. an MD), doesn't mean you can actually help people.

I have read it and thought it was good (I am 40). There are a lot of typos and I feel like that makes it feel very unprofessional. But it was nice to have a book to read about POTS. She gathered tons of info into one place. There were no earth-shattering miracle cures in the book, but I am glad I read it.