FarmerAmy

Does the Klonipin make you dizzy the morning after you take it? I feel like it makes me a little groggy for an hour or two in the morning, but it isn't bad. However, Klonopin makes me very dizzy 30-60 minutes after I take it. But I take it shortly before I go to bed and the dizziness doesn't cause me any problems since I am trying to go to sleep anyway.

I do several things to get my sleep. I wear an eye mask to block out light and I also wear earplugs (the orange foam ones). It takes a little while to get used to wearing earplugs. They tend to bother your ears the first few nights you wear them, but after that you shouldn't notice them. I also take Klonopin. I usually take 0.5mg before bed. But sometimes I will take 1mg if I am feeling like I won't sleep. I would stay away from Ativan for sleep. I took it for a little while and it only gave me 5-6 hours of sleep and then I was wide awake for the rest of the night!

Spinner, I feel really good when I am in the pool (or ocean). I think it is a combination of cold temperature, pressure from being underwater, and reducing the effect of gravity. There was a time last year when I went to the local pool. I got into the hot tub and within a few minutes I felt like all the blood had drained out of my head. I then got into the pool. There was a wheelchair ramp into the pool and as I walked down the ramp I could immediately feel the blood coming back into my head. I felt so much better before I even got up to knee-deep in the pool. I feel pretty terrible after a warm bath. I feel ok while I am lying down in the bath, but I feel very lightheaded the moment I sit up.

Thanks for the feedback, Katybug. Yes, I generally have to keep moving if I'm on a walk, too. But, amazingly, I can stand still in one place if my legs are freezing! I feel like I'm just shooting in the dark when I try things. I would love to have some better understanding of what is going on so that I have some direction when I try things.

I'm still thinking about this. I'm baffled. I know one of the problems with POTS is that the blood vessels in your legs don't constrict properly when you are upright. But my leg vessels seem to constrict just fine when my legs are freezing. I know it's the vessels on the surface that constrict due to cold. Are the same vessels supposed to constrict when you are upright? Or maybe interior vessels constrict in that case?? I tried Midodrine last year and I did not get much benefit. I can't figure out why cold is so effective in relieving my lightheadedness. Do other people get as much relief as I do from having cold legs?

Thank you again for the encouragement, everybody! I am feeling much better emotionally. I feel like that roller coaster ride of hope and then disappointment is just so brutal. I really do so much better when I focus on acceptance and being thankful for what I do have. Not to say that I'm giving up, but I think I really have to guard against the feeling of "Finally! I've found something that will help me!" That has lead to too much disappointment for me. And I notice that my symptoms are much worse when I am upset. I start having chest pains and headaches, etc. I do so much better overall when I am in a positive state of mind.

I agree that doing an elimination diet is the best way to see if these foods have a negative effect on you. I am reading Minding My Mitochondria by Terry Wahls. I just finished a really good section on how to identify food sensitivities. (It's in Chapter 6 and the section is called Two approaches to identifying food sensitivities.) You can be tested for food allergies, but these tests can miss food sensitivities. Really, the best way is to eliminate all suspect foods for at least a month, then add them back in one at a time and see how you do. This is better than eliminating one food at a time. What if you are sensitive to several foods? You would only feel the positive effect once all the offending foods are eliminated. I would spend some time figuring out what you can eat before you do the diet. And I would stick to the diet while you are doing it. No sense going to all that work if you're going to sneak in a little gluten here and there. Good luck! Amy

It's winter here in Colorado, which means that I get brief periods of feeling really good. I will go for a walk and bundle up in a heavy coat, hat, mittens, and warm boots. But I make sure to just wear jeans--not warm layers on my legs. After 15 minutes or so my legs get freezing cold--almost numb. And magically my lightheadedness lifts! It feels so nice to be able to enjoy walking around outside and doing things like looking up at the sky without feeling like I am going to fall over! Unfortunately the effect only lasts for a few minutes once I get back indoors. I know the blood vessels must be constricting in my legs when they cold. I thought this would raise my blood pressure and therefore make me feel better. Not so. I did an experiment today. I measured my blood pressure while I was nice and warm inside. Then I went outside and literally sat in the snow until my legs were good and frosty and I didn't feel lightheaded. I stayed outside while I measured my blood pressure. Here is my blood pressure before and after: 112/80 (warm and toasty inside) 108/78 (freezing cold outside) I was very surprised that my blood pressure actually dropped a bit! Why was I not feeling lightheaded??? Maybe my constricted leg blood vessels were holding less of my blood volume and shifting more of it to my head--without increasing my blood pressure. I was thinking that I need to get my blood pressure higher somehow in order to decrease the lightheadedness. But now it looks like this is not true. I noticed a similar thing over the summer. When I went to the pool I also felt great! I know my body temperature dropped while I was in the water. It was really nice to be able to swim a little. I am asking all these questions in the hopes of finding some symptom relief. If I can figure out what changes when my legs are freezing, maybe I can recreate that somehow and find relief more often. It sounds unpleasant, but I am thinking of wrapping ice packs around my legs and seeing if that does much. I also ordered some new compression stockings. I think my old ones have stretched out and are not as effective. Anyway, thanks for helping me brainstorm!! Amy

I wonder if it would help to suck on a mint or something in between drinks. That might help your mouth from drying out so much.

I'm so happy to hear you're doing better! Have you considered finding a different doctor? It seems like your current one fights with you instead of working with you. It would be nice if you had a more supportive and sympathetic doctor.

Thank you so much for the suggestions everybody. I'm not quite sure where to go from here, but you've all given me a lot to think about. I've been feeling sorry for myself the past few days. I hate feeling this way :-( I think it comes from getting my hopes up about a treatment, then being let down. Again. That's where I struggle with being chronically ill. I feel like my emotional state does better when I work on accepting where I am right now and remembering all I have to be thankful for. But part of me feels like I need to keep trying things to try to get better. However, this is what leads to the emotional roller coaster and all the disappointments.

I'm not quite sure what to say. Have you asked your cardiologist? I had terrible chest pains for a few months last year. However, I had an echocardiogram and I knew there was nothing wrong with my heart. I finally started taking Klonopin and that seemed to calm my nervous system. Within a day or so it relieved my chest pain and also helped to lessen my tachycardia. I have a minor tightness in my chest, but I really haven't had chest pains since I started taking Klonopin.

I'm so sorry to hear what you are going through. I think I would try to figure out how other people deal with an illness that potentially shortens life span. How do people with MS deal with this? Do you receive any kind of therapy or counseling? I see a therapist every other week. She is a huge help in terms of dealing with my illness emotionally. I bet your mom could benefit from some counseling, too. I can imagine that it is incredibly difficult to have a child with a chronic illness. At the same time, you shouldn't have to feel like you need to protect her. You have enough to worry about just taking care of yourself. My last thought is that nothing in life is certain. I hope that I will regain my health and live to an old age. But I could get hit by a bus tomorrow! I try to remind myself of what makes me happy and what I have to be thankful for right now. I know that I have expectations of what my life should be like and my illness has limited me so that some of these things will not happen (at least not any time soon). I try to work on letting go of these expectations. Which, by the way, is not easy for me! But I do think it has the power to make me happier overall. I am not a Buddhist, but I do find that Buddhist teachings help a lot when we are trying to live in the present moment instead of worrying about the future. Good luck to you! Amy

I am feeling really discouraged today. I've been trying my latest treatment, IV fluids, for about a week and they aren't really helping. I feel like I don't know where to turn. I was seeing a cardiologist for about 6 months and she ran out of ideas for me. For the last 6 months I've been seeing a doctor who practices Functional Medicine. She is trying to help me with adrenal insufficiency and fungal dysbiosis and she says this will improve my POTS symptoms. It all sounds good on paper, but so far no improvement. I am at a loss for what to do. I don't know if I should stick with my current doctor for a while longer and see if she can help me. Or maybe I should look into going to someplace like Vanderbilt in the hopes that they will help me understand my POTS better. I feel like I spend so much time and money dealing with my illness, but I don't see any results. Sometimes I feel like I would be better off just trying to eat healthy, relax as much as possible, and excercise as much as I can. I dream of having something like a physical therapist--somebody I can go to each week and tell them what I've been doing and how I've been feeling and they could guide me. I feel like I never know if the things I'm trying are helping or hurting me. I spend most of the day reclined so that I don't feel lightheaded. Is this what I should be doing? Or should I push through the lightheadedness in order to strengthen my system? I feel lost and don't know where to turn. I'm sure a lot of us feel this way. I don't know if there are any answers out there, but I thought I would see how other people deal with these things. Amy

I am feeling discouraged :-( My doctor finally told me I could do IV fluids. I was so excited at the thought of getting some temporary relief! I got the first IV a week ago and I felt a little better for about 24 hrs (less lightheaded). But I've had 2 more IVs since then and they really haven't helped at all. I feel so discouraged and don't know what to do. Here are the details of what I've been doing: I've been doing 1 liter of Lactated Ringer's every third day. I have small veins and we've been using a 24 gauge cathether, so it takes about 2 hours for the fluids to infuse. We are going to try to go up to a 22 gauge. I'm hoping to hear from some of you who might have more experience with IVs than I do. Should I ask about doing more volume with each IV (2 liters??) Should I try to do them more frequently? Should I try saline instead of Lactated Ringer's? I did one IV about a year ago and it made me feel a lot better. But I haven't done any since then until this past week. I don't know if I should keep trying different things with the IV fluids. Or if I should give up because IV fluids aren't going to help my lightheadedness. Any thoughts are much appreciated! Amy

I had my first IV on Saturday and I thought I would report back to the group. I did 1 liter of LRs in the afternoon. I didn't know what to expect after the IV and I was very anxious to feel the results. I felt significantly less lightheaded for about 24 hours. This was the first time in over a year that my lightheadedness had lifted, so I was a little out of sorts and didn't know what to do with myself. I was upright for a lot of the day and it made me notice how weak I've become. My body is no longer used to the effort it takes to stay upright. But it did feel really nice to be able to sit and stand for a lot longer than usual! I plan to do at least a few more IVs and see how I feel. I realize that I need to make sure to get some additional activity while I feel the effects of the IV in the hopes of rebuilding some strength. I'll also put some more thought into starting the florinef and salt pills again. If none of this helps, I will follow your prescription, Ashelton80

Are you still feeling miserable? Be sure to let your doctor know ASAP. I think we are too used to feeling miserable and toughing it out. I have experience with psych meds and withdrawal--it is awful. But you should not be suffering the way you are. Your doctor needs to help you get off the zoloft in a less painful way. I have suffered through things the way you are now and I figured I just had to tough it out. But several times my husband or my mom have urged me to call the after-hours number with my doctor because I was feeling terrible. I'm so glad I did because each time I called we changed our plan and things became a lot more bearable. I hope you feel better soon!

I'm sorry to hear it. People can be very disappointing. I lost a lot of friends when I got divorced because they couldn't handle it. I've lost more friends since I've been sick--again because they can't handle it. A lot of people can only be your friend when times are good. They can't deal with the bad things in life. It is super disappointing! But there are those rare people who will stick by you no matter what. Be sure to hold on tight when you find these people! They are your true friends.

I am on a Candida diet right now (no gluten, no grains, no dairy, no sugar, no processed foods, no yeast, no starch, etc). I make sure to eat a huge salad with lots of leafy greens (kale, spinach, arugula, etc) every day. I don't feel an improvement in my POTS symptoms, but I do feel like it has improved my digestion and overall health. My husband and I own an organic vegetable farm, so I am really into food! I've spent a lot of time learning about food issues over the years. What I have learned is that our Western diet is full of junk and poison and it is making many of us sick. Here are some of my favorite resources for anybody who is interested: In Defense of Food by Michael Pollan Food Rules by Michael Pollan (super short book - only took me 1 hour to read) Dr Terry Wahls - her TedX video on YouTube is great; so is her book Minding My Mitochondria I am also interested in reading Wheat Belly, but haven't yet. Wheat has been bred so much that the wheat plant today is very different from the wheat plant of 100 years ago. The idea is that this new wheat is much less digestible and that is why we have such an increase in gluten intolerance. I am really passionate about food issues. If you look around, so many more people have food allergies or food-related illnesses than they did 50 or 100 years ago. Our diet and food system is killing us!

Thanks HyperPOTS8--this is really helpful. I had no idea that people took that much sodium.

OK, so I'm getting the picture that maybe I need to try again. Yes, I have taken 0.1 mg florinef, 3L of water or electrolyte drink, and 1000 mg NaCl all at the same time. But maybe I really need to boost the levels of the florinef and salt. Can I ask how you know that you have severe hypovolemia? I'm just assuming I have hypovolemia based on several things: --Liquids seem to go right through me. --I felt so much better the one time I had an IV. --My symptoms are a lot worse when I am a little dehydrated.

In general, I try to make my doctor appointments in the afternoon. But occasionally I need to do an appointment in the morning. In that case, I have my husband or my mom take me to the appointment. And I make sure to have the rest of the day open so I can lie in bed and recover from leaving the house in the morning.

Hi Jen, I'm sorry you're having a rough time. I feel like somebody needs to write a beginner's guide to POTS! I feel like you get your tilt table test results, then the doctor says GFL! (one of my husband's favorites--"Good effing luck!") I have had mild POTS symptoms for 20+ years (without knowing what was going on). In November 2011 my health took a nosedive and I have been pretty non-functional since then. It is such a drastic change when POTS hits you, but I feel like most of us don't get adequate support along with a POTS diagnosis. If you were in a car wreck and became paralyzed, I think you would get all kinds of help in dealing with your life change. Developing POTS can be almost as drastic, but I feel like you're left out in the cold wondering what hit you. A few things I have learned in the past year: --I had to get used to the long periods of waiting between appointments, treatments, etc. Like "try this new med and get back to me in a few months." Really?!? --I learned that it is best for me to deal with one or two doctors at a time. At first I was so desperate that I spent all my time (any money!) going to various health care providers. Then I didn't know what to do when my cardiologist's advice conflicted with that of my acupuncturist. I still have a long list of potential health care providers to try, but I plan to try them one at a time. --Likewise, I try only one new treatment at a time. If I start 3 new things and I feel a lot better--or worse--I don't know which of the 3 things has changed the way I feel. --I also try not to get my hopes up too much for the next appointment I have or the new med I am going to try. I've had so many doctors tell me that a certain med should make a huge difference in the way I feel. So far, nothing has. I've lowered my expectations and thankfully this has gotten me off the emotional rollercoaster of hoping the next thing will finally make me feel better, only to be let down. Again. --I had to come to terms with how drastically my life had changed. I was freaking out, to put it mildly, when I first became ill. How was I supposed to continue living my life if I couldn't stand up?!? The answer was that I had to make big changes and really slow down. It was not easy and I still struggle with it every day. But I have learned that for now, this is the new "normal" for me. POTS is a poorly-understood chronic illness and to put it simply, it *****. I am still hopeful that I will recover, but I try not to spend too much time and energy (and money!!) trying to find the silver bullet. It is exhausting and makes you crazy! Best wishes to you, Amy

Hmmm....thanks for the feedback. Jangle, you are making me think about revisiting Florinef and salt intake. I was taking 0.1mg of Florinef for 3 months and did not notice any difference at all. But maybe I should ask my doctor about trying again with a higher dose??? Does anybody know what the range of doses is for Florinef? I was also taking salt pills, but stopped that in the last few weeks--again, because they didn't seem to do anything for me. I took 2,000mg per day for a few months, then I dropped down to 1,000mg per day for about a year. Then, like I said, I stopped recently. I didn't notice any difference one way or the other. I was drinking a ton of fluids for a while. I was up to 3L per day of electrolyte drinks (a few different kinds--all without sugar). But again, I stopped pushing the fluids because it didn't seem to do anything. In fact, drinking a ton was making me more miserable--my bladder was constantly full and it felt like I spent half my day going to the bathroom. I still stay hydrated, but I don't force myself to drink as much anymore. I'm now wondering if I gave up too easily or if these things really just don't work for me. My symptoms are worse if I get dehydrated, so I make sure that doesn't happen. But honestly, I did not notice the slightest improvement with Florinef, salt pills, or electrolyte drinks. I still plan to try the IV. I feel like that will give me a clear indication if hypovolemia is my problem. Then I guess I need to figure out the best way to address the problem.

I am looking into hypovolemia once again. I think that is a large part of the problem for me. When I read about hypovolemia, they talk about plasma renin, angiotensin II , and aldosterone. Florinef is supposed to replace aldosterone and thereby increase blood volume. But we all know that Florinef does not work for a lot of us--and I never see that acknowledged in writing. I am about to try doing IVs to increase my blood volume. Is this the main thing you do when Florinef is not effective? I had an IV a year ago--right after my tilt table test. I felt fantastic within about half an hour of having the IV. But my cardiologist said that they don't give people IVs on a regular basis, so I gave up on that idea. But I just had an appointment with my current doctor (who practices Functional Medicine) and asked her about IVs. She is now working on referring me to a center that will do regular IVs for me. I am very excited about the prospect of feeling fantastic again--even if it is only for a limited time. But now I feel confused after reading about hypovolemia again. I will definitely pursue the IVs, but is there something else I should be pursuing as well? It seems like there should be some other way to increase blood volume. I'd love some input from anybody who understands this better than I do!