Sarah4444

I am new to all this, but I have a feeling that you're on the right track. I have had multiple POTS episodes over 25 years (just didn't know what to call it or what was going on) and I have been trying to figure out why I always "bounced back" to some degree without medical treatment that recognized POTS, while this time I went downhill hard and fast and have been having much more trouble recovering. I don't have the answers, but know that in the past, when episodes seemed to be triggered by trauma or illness I did recover quite well - when I was hospitalized, I was always given IV potassium. This time, the long slide downhill seems to have begun during pregnancy and have been exacerbated by SNRI use, but I haven't been hospitalized. But this morning I had to pee seven times in three hours, before I was able to really start the fluid/salt loading. Like you all I spend hours of insomnia time trying to sort this all out, wishing the doctors I see would help.

I have the same problem right now. On a good day I am lying down 22 of 24 hours, with 1 hour total throughout the day when I can manage reclining or sitting up and 1 hour in the pool, floating around (light swimming for 2-3 min). I have watched more brainless TV in the past year than in the prevous 39 years combined and I'm bored out of my tree. I have also found that books with complex plots exhaust me, which is unusual - I have always been an avid reader. What is most frustrating is that I feel like my energy is focussed inward, like I have to pay attention to things like breathing that I used to take for granted. I feel and seem very distracted and am beginning to feel disconnected from my kids - when they talk to me I am always having to ask them to repeat what they have said, and I have to force myself to pay attention and concentrate. I can't feel mentally relaxed at all even when it appears that I am doing nothing but lying around all day. Wish I could drink (kidding - sort of). Sarah

Thanks guys - that will help me get started, anyhow! Sarah

The medical compression stockings sold at the only store close enough for me to get to right now are very expensive and I am worried I will get the wrong kind. I hate to even wear nylons, and I can't tolerate even 5% spandex in my underwear. I have skin reactions to latex, so don't know what kind of compression stockings to try - what material, shape, compression level... any suggestions would be greatly appreciated! Also, I don't have visible leg swelling - do others still have luck with compression stockings when this is the case for them? Thanks in advance- Sarah

Thanks for your replies. I can't call my doctor, but did end up in emerg the first time I tried Florinef. When I asked if the crushing chest pain, cough and eye pain could be a medication side effect they basically said who knows and sent me home. The first time (at 0.1 mg) my actual eyeballs felt swollen, and when I started again my eyelids swelled noticeably, but my eyes still feel strange and swollen too, but not so painful. I have no idea what to do about it though.

When I titrated Florinef up to 0.1 mg my eyes hurt a lot. Then I went off for a couple of days (eyes got better, heart got worse) and started again taking .025 mg - my eyelids got very swollen and sore. This has never happened before, but every day something new and strange seems to be happening. Has anyone else noticed eye pain that seems (or not) to be related to taking Florinef? This is so confusing. Sarah

I had my first POTS flare-up at 16, and have had many since then, often preceded by stress and/or trauma; I am now 40 and have two young kids. Though not officially diagnosed, my family doctor believes I have POTS (he's just not totally sure what that means), and through him and one (not overly helpful) cardiologist I have access to Florinef and Midodrine and am basically trying to figure out how to treat myself as I wait for an appointment with a dysautonomia specialist. Thank goodness I am Canadian and didn't have to pay for the dozens of wild goose chase appointments up to now, or we'd be living in a cardboard box. I am currently battling the worst POTS flare-up yet - am bedridden, can only shuffle to the bathroom and back to bed. After reading many threads on this forum, I am wondering if you might be able to help me with some questions. Sorry if they are repeats - I have tried searching, but have lots of brain fog these days. First, I need meds advice. So far I am taking Florinef .025 mg (tried as much as .1 mg but that made my chest hurt too much, my eyes hurt, and aggravated the dry cough I have). I just added Midodrine 2.5 mg three times a day and it helps with my breathing problems and brain fog, but I still can't be vertical. What does it feel like when Midodrine really starts helping? And is it just my imagination or does the tiny bit of Florinef help? I am supposed to try a beta-blocker too, but want to change one variable at a time if I can force myself to be patient enough. What have people found with beta-blockers? Apparently as well as tachyardia I have some kind of conduction disorder. Because I have had increasingly disabling pain for 23 years, I have tried many meds. The pain obscured my ability to figure out that I also had POTS, but I now feel strongly that my neurotranmitters are at the bottom of both problems. Celexa helped a bit with POTS symptoms, but greatly increased my trouble with pain - turned it from joint pain to whole body/constant muscle pain. Remeron seemed to make POTS slowly get worse, and Cymbalta helped with mental clarity but seemed to cause a marked increase in OI and SVT episodes. Does any of this sound familiar to anyone, and if so, can you tell me what you have and why you think this might be happening? Also, has anyone else noticed that their senses are heightened - I can taste, smell, see and touch with more sensitivity. How about experiencing a delay in ability to answer people when they speak to you? Finally, I think I have convinced myself (with the help of Midodrine) that I will not likely be dying imminently, but am wondering what to expect when it comes to recovery. It seems like I have been on a slow downward spiral for 24 years, accelerated after my second (and final) pregnancy in 2004. Will I be able to drive, shower, cook, look after my kids and myself in any way again? I know that everyone seems to have a different experience, but has anyone got better? Are there any factors which seem to relate to recovery or lack thereof? I want to have some hope, but have discovered that being too hopeful can lead to attempts to be or appear "normal", which can have devastating results. Thank you all in advance for any info you can provide - it's lonely up here in the middle of nowhere and I have been so comforted (and at times terrified) to read your posts. It can be hard to ask for help after learning not to for so long.

That was happening to me last year. Although my bloodwork was normal, my endocrinologist increased my Synthroid from .75 mg to .125 and at that dose it stopped falling out, although the texture is still different. Good luck. Sarah

I also have hypothyroidism and dysautonomia. In 2008-2009 I had severe fatigue - I would basically pass out and need to sleep for several hours, and if I tried to force myself to stay awake I'd get a migraine. I began seeing a new, great endocrinologist who increased my Synthroid even though my bloodwork was normal. On 0.75 mg of Synthroid I was exhausted and felt pretty depressed, but now at 0.125 I am much less of both of those things. I also went off all medications except Synthroid and my headaches improved. I am now starting Midodrine, hoping that I will someday be able to stand up again. I am also hoping to find some doctors familiar with POTS - I live in Northern Ontario, Canada and all resources seem very far away - although it seems, from reading these posts, that my frustration with doctors' lack of knowledge about dysautonomia is almost universal. I hope this helps.

I just started taking Midodrine today, and I live in Canada. It hasn't been available recently but my pharmacist was told that it should be again relatively soon. I called a Canadian online pharmacy and they said they should have it again in about two weeks. I am new to the forum - I have had trouble with dysautonomia for 26 years but didn't know what it was, and am just in the process of getting diagnosed now. I don't know if you can get my email address through the site, but I'd be happy to keep people posted re availability of the drug up here.

Hi there - I'm new here and I have been literally flat on my back with POTS for a couple of weeks. I live in Northern Ontario, Canada, so although I am fortunate that my medical visits will be paid for, it will take a little while to find out who to see and to make the arrangements. My doctor and I suspect that I may have Ehlers-Danlos Syndrome as well. He is a great doctor and good listener but has only seen one other patient with POTS; he is trying to get me stabilized enough to travel, but it seems to be a matter of guessing what to do. I have had POTS all my life and only recently found a vocabulary for what was going on. It has been aggravated by many things over time, including most recently (2004) pregnancy. I have joint pain all the time, and in Feb started Cymbalta, which was great for pain and awful for POTS. I stopped Cymbalta and have just started taking Florinef and now can lie down without feeling like I'm going to pass out. I guess the next step is to be able to sit and stand again - I have two little kids and am finding this really hard. My doctor wants to switch me from Florinef to Celexa, but when I took Celexa once in the past I wasn't happy with the side effects and it seemed to reduce my dopamine and NE levels over time (just my guess). When I am feeling better and can get some blood to my brain again I will read the posts more carefully, but in the meantime are there any EDS/POTS people out there who might be able to give me some ideas about which meds might work better than others? I am just too exhausted for much experimenting and too many wild goose chases right now. Thanks in advance!