FarmerAmy

Hi Sonya, I think a lot of us can relate to feeling abandoned. It *****! I have had undiagnosed POTS for over 20 years. My symptoms took a drastic turn for the worse in November 2011. Coincidentally I was also diagnosed with POTS around the same time. For me it has been a lot of trial and error to see what works. I have spent a lot of time on this forum and others seeing what helps other people. I am not back to my "normal" level (i.e. pre-November), but I feel so much better than I did a couple of months ago! I have the right medication that helps me, I drink an electrolyte drink (and spend half my day going to the bathroom!), I wear compression stockings, I work on my laptop in a recliner, and I try to walk a mile or two each day. I only shower (or take a bath) in the evening and sometimes I skip a day when it seems like too much effort. One of the biggest things that has helped me is learning that I have POTS. Before I knew what was going on I really pushed myself and struggled every day. Now I know that I need to take it easy and my frustration level is much lower. I used to get so frustrated because I would feel ok lying on the couch, but I couldn't sit at my desk for more than about 30 minutes without feeling exhausted. That made me crazy!!! Now I know that I just need to set myself up in my recliner and I can work for a long time without feeling fatigue. It really seems like different things help different people. And some people have a much harder time than others. My advice is to try anything and everything you come across that you think might help you. Hopefully you will find a few things that will make your life easier!

My massage therapist has TMJ pain and she also specializes in helping people with TMJ pain. I was her "victim" when she did the training for this and she did all kinds of work on the inside of my mouth, around my jaw, on my throat, etc. It was not particularly enjoyable, but it might help in your case. You might try looking for a massage therapist in your area that deals with TMJ issues.

I have found swimming to be good exercise for me. I'm horizontal (for the most part), the cool water seems to constrict my blood vessels, and I think the slight pressure from being underwater seems to help.

I just started taking 0.5 mg Klonopin 3 nights ago and I feel SO MUCH BETTER! Here are the details in case you are interested... About a year ago I had a bout of severe anxiety and depression. I took Klonopin as part of my treatment. I have struggled with fatigue for years, but I did not know I had POTS at the time. I noticed after a few weeks that my fatigue was much better than usual, but I figured that it was just because I wan't having such bad anxiety and depression. Once I got diagnosed with POTS it finally registered with me why I felt better on Klonopin. I took Klonopin for about 2 months and it was very difficult for me to get off of it. My POTS symptoms have gotten much worse in the past four months. My cardiologist put me on Midodrine and Metoprolol, but I was having such bad chest pains from the Midodrine that I had to stop. But as soon as I stopped my heart would not stop pounding really hard and I also had a very hard time standing up. A few nights ago I was feeling very desperate with my heart pounding hard and I couldn't fall asleep. I had been thinking about Klonopin for a while, but I was reluctant to get back on it. However, my desperation won out and I took 0.5 mg that I had leftover from last year. I felt so much better the next day! I don't have chest pains or the feeling of a pounding heart beat. I am also able to stand up longer than when I am unmedicated. I am still a long way from where I was before my POTS flared up 4 months ago, but I feel like I am at least somewhat functional now. I probably have 8-10 hours a day where I feel pretty ok. I specifically wanted to mention this because I don't think my cardiologist would have recommended Klonopin for me as a treatment. She said it is ok for me to take it, but I don't think I would have come across this treatment without my previous experience a year ago. Here is my (very un-scientific) explanation for why this is helping me. I feel like the Midodrine and Metoprolol were fighting the signals being sent out by my nervous system and the result was that I felt even worse. I feel like the Klonopin just calms my whole nervous system down and the signals aren't as crazy. Some things to consider...Klonopin knocks me out for a solid 12 hours, which is somewhat inconvenient. But I have to say that it is nice to always sleep well at night! I also have what I call "cotton candy" in my head when I wake up for an hour or two. But this doesn't always happen--just about half the time. It is also difficult to stop taking Klonopin. I had insomnia and bad headaches the last time I stopped taking it. Actually, I was finally able to stop when I had a bad cold. I figured I was in bed feeling crummy anyway, so I might as well feel crummy from Klonopin withdrawl as well. It probably took 3 nights of withdrawl before I felt ok.

I haven't had quite the same experience, but I thought I would share mine just in case...A number of years ago I had ringing in both ears for a number of months. My ears were also very sensitive to noise during this time. I went to the doctor a bunch of times, but the only thing they could suggest was giving me anti-anxiety meds so I wouldn't go crazy from the ringing. I don't know why I decided to try this, but I finally wore earplugs (the orange foam kind) for about a week straight. I think I probably did this because I had gotten so sensitive to noise. Anyway, it worked!! Who knows why--maybe something in my ears got to rest or something.

I have two thoughts...you could take the train! You could even take the auto train if you want your car in FL. But if you want to drive...I do fine in the car as long as I recline my seat and put my feet up on the dashboard. If you can't lie down in your car, maybe you could rent a larger vehicle for this trip.

My knees often hurt and I think it is because of blood pooling, but I can't actually see anything. I sometimes wear "shaping tights" and this seems to help a lot. (I haven't actually tried compression stockings yet--shaping tights are the cheap version you can get at the store.)

I often have this, too. It is usually when I am lying on my side. The arm that is under me is the one that goes to sleep. I have just attributed it to reduced circulation.

I like to lie on my back with my legs up the wall. Sometimes I gently turn my head from side to side while lying there to work on range of motion. I feel like lying like this helps to release a lot of tension. I also love to have my back cupped when I get acupuncture. Unfortunately you can't get all the way into your neck with cupping, but it is incredible for releasing tension in my upper back.

I am going to a TCM practitioner right now and my gut tells me this is my best bet. I have gone to several TCM practitioners before (some before I knew I had POTS) and they have all told me I have the same thing (blood stagnation, etc.) What have other people experienced with TCM? Has acupuncture helped? What about Chinese herbs? I am wondering if anybody has noticed a significant difference with acupuncture. I feel a lot happening in my body during my acupuncture sessions, but I don't notice any improvement. A side note...I love cupping!!!! This gives my back so much relief!

I have read so many posts on this discussion group as well as in many other forums about people having frustrating experiences with their doctors. If this is you, I would like to encourage you to dump that doctor! What you are experiencing is real and if your doctor doesn’t understand and can’t help you and tells you things you know are wrong, it will only make you crazy to keep going to this doctor. My own experience has been about 50/50. Half the doctors I have been to are extremely caring and even if they can’t cure my health problems, they at least understand that I am suffering and do their best to help. The other half have been extremely damaging to me. Two in particular were flat out terrible. They both told me that I would not find a reason for my fatigue and that I should stop looking. (I was so scared after they told me this that I fell into a major depression and couldn’t bear to go to any doctors for months. It took me over a year after this experience to figure out that I have POTS.) They obviously could not relate to what it is like to have a chronic illness and had no idea how desperate you can feel when you are trying to find something—anything!—that will help. Having a chronic illness is a very difficult and scary experience and I believe that it is critical to have a doctor who can express empathy and caring. You will do yourself no good if you continue to go to a doctor who makes you doubt yourself and feel frustrated. You deserve a doctor who cares and understands what you are going through! Keep looking for a doctor who will work with you—not make you feel worse. There are good doctors out there and you will be so much happier if you find one.

I work for myself. My husband and I own an organic vegetable farm. We have about 40 employees in the summer and I do all the "business" parts of our farm--i.e. all the office work. My symptoms have gotten a lot worse in the last 3 months, but fortunately this is the slow part of the year. I still have a lot of work to do, but it is not crazy like it is in the summer. We'll see what happens when the busy season gets here! I really can't sit at my desk to work anymore so I work on my laptop while lying on the couch. There is no way I could work if I had a "regualr" job.

Thanks for the feedback everyone. I am still feeling ambivalent about trying Klonopin again, but it helps to know what other people have experienced.

My first suggestion is to dump your GI. There is no point in wasting your time and money on a doctor who makes you crazy. Have you tried colon hydrotherapy? I have never tried it, but my father in-law has a condition similar to MS and he does colon hydrotherapy when he hasn't had a bowel movement in a while. It is much better than a trip to the ER!

I am wondering what other people have experienced with Klonopin. Last winter I had a major depressive episode with severe anxiety. One of the things I took during this time was Klonopin. Even though my mood was terrible during this time, I noticed that my fatigue and dizziness were better than they had been in years. I did not know that I had POTS at this point. I just knew that I struggled with fatigue. I finally figured out a few months ago that I have POTS. When I looked at a list of POTS meds a bell went off for me when I saw that Klonopin can help POTS. No wonder my fatigue and dizziness were so much better when I was taking Klonopin! For the past few months my POTS symptoms have become much worse and I am not very functional. I am taking midodrine and metoprolol. They help with some of my symptoms, but they don't do much for the fatigue and dizziness. I have found myself thinking about trying to take Klonopin again. I wonder if it could help with the fatigue and dizziness now that these symptoms are so much worse for me. I am reluctant to try Klonopin again because it was difficult to get off of. It also completely knocked me out when I took it. But I am also desperate to find something to help me feel better. Any thoughts?

Thanks for the replies everybody. My doctor seems baffled by my particular progression of symptoms and I just wanted to see if anybody had a similar experience. I increased my dosage of midodrine to 10 mg a few days ago and that seems to be helping--thankfully!!

Has anybody else experienced a sudden worsening of symptoms? Here is my story... I have always had some form of orthostatic intollerance--at lease back to my teens (I am now 40). Things like difficulty standing in one place and feeling light headed after a hot shower. In the past 5 years or so my symptoms have slowly gotten worse. I become exhausted from sitting at my desk and doing house work is difficult. All the bending down and standing up kills me. However, I would still describe myself as pretty functional during this time. (I started taking Effexor for depression about 5 years ago and have since switched to Cymbalta. I'm not sure if this has anything to do with my slow decline, but it is a possibility. I am now switching to a different anti-depressant.) My symptoms have suddenly become 10 times worse since the beginning of November. I've had a few things happen lately that could be the cause, but the doctors are baffled and so am I. Here's what's happened recently: --I had a really terrible head cold in October. It was much worse than I normally have and took 3 or 4 weeks to feel better. --I also got a stomach bug (vomiting) at the end of October. --I started taking Norethindrone on November 4. (It's a long story. I am doing invitro fertilization and the Norethindrone was to prepare for a frozen embryo transfer. The FET is on hold now because I am feeling so crappy.) I took the Norethindrone until November 25 and should have gotten a period on Nov 28, but STILL have not gotten a period as of Dec 20. This is very unusual for me and the IVF doctor is baffled. I really thought the Norethindrone was the cause of my sudden decline, but I haven't taken it in over 3 weeks so it seems less likely to be the cause of my problems. --I started going to a cardiologist at the beginning of November. (I was only diagnosed with OI and POTS in September--even though I've had symptoms for a very long time.) She initially just had me increase my fluids and take 2000mg of salt daily. After a recent TTT she started me on Midodrine 5mg on Dec 13. I don't think I feel any benefit from the Midodrine yet. I have gone from feeling chronically fatigued, but functional, to needing to lie on the couch most of the day. This happened over the course of about 3 weeks. It has been about 6 weeks total since I started feeling a lot worse. (I declined for about 3 weeks and have stayed the same for an additional 3 weeks.) Some days I can get up and do things for a few hours (with some breaks), but most days I am just stuck lying down the whole day. My question is has anybody else experienced this kind of progression? I am so puzzled as to why I took a sudden turn for the worse. Was it one of the colds I got? Did the hormone meds do something bad to me? And I am also wondering what I can expect for the future. I don't know if this is a worsening of my POTS or if I have something different going on. My cardiologist has been great, but doesn't have any answers as to why I suddenly got worse. And she tells me I'm something of a mystery (I'm sure we've all heard that a lot!) I'd love to hear it if you have had a similar experience. Amy

I agree with the suggestions to find a different doctor. I have had various experiences with doctors. Some don't seem to know what to do with me and offer really unhelpful and sometimes hurtful advice. Others are more compassionate and want to keep trying to help me out. These are the ones who will really put a lot of effort into my treatment as well as just my emotional well-being. Keep looking for someone who will work with you!