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Everything posted by mkoven

  1. Hi all, It's been a while since I've posted, as I generally am doing better. I have been on 3/4 of a pill of florinef since 2008, and midodrine 5-7.5 mgs as needed, up to 5 times a day. Here's the deal. I'd been taking the global brand since shire stopped making proamatine. Sadly, it looks like Global is stopping production. My choices are now mylan or Sandoz, as those are what my local pharmacies can get. Reviews? thanks!!!
  2. I have been here since 2oo6. I have had confirmed that I have a connective tissue disorder with abnormalities at the cranio-cervical juncture. I didn't have trouble till late 30s, because it probably took that long for my neck problems to progress. I notice that my symptoms are indeed worse with head position!
  3. Corina, That's wonderful! It's great to hear the difference it has made and how much better you are doing ! I have heard good things about this drug, when other more mainstream drugs aren't working. I haven't heard as much about its use in the US.
  4. I teach and research in a university setting. I've been lucky, as my symptoms didn't really hit till 2006, after I'd been in my job for 8 years. I have had bad spells where I couldn't work, but thankfully, have improved with meds, rehab, neck brace for cranial-cervical instability. There are always many tasks to accomplish, but I have a lot of flexibility about when I accomplish them. Teaching is actually the most physically difficult part, and I often do it seated. I can grade papers and read in a recliner. I don't teach large lectures. Also as I have a unversity population, I don't have to worry as much about discipline. I have flares around my period, esp. late in the day, and it can be a struggle.
  5. Hi, It's been a while since I've posted. I've generally been relatively stable for a couple years now. I'm planning to fly to Europe this summer for work and play, and have some concerns about the transatlantic flight. I've flown up to 4.5 hours without too many problems-- some issues during take off and landing, mild tachycardia at altitude, and just feeling a little drunk. But nothing that was serious or that didn't resolve relatively quickly. I'm a little concerned about the longer time in the air, as I know some of you are okay for short flights, and less as the flight lengthens. Here are my choices. I could try to break the flight up, by stopping over in Iceland. That would give me five hours in the air for the first stretch, and about three for the second. The downside is that even if I upgrade to business class, the seats on Iceland air do not really recline. Another possiblity is to just go for the Chicago to London flight- eight hours? I can probably find a way to upgrade to business and recline. So here's the question, am I better off with a shorter flight not reclining, or a longer flight, where I can recline? I just really don't want any mid-flight pots crises.
  6. For me, premesntrual hormones are a huge insomnia trigger. As I get older, premenstrual can last two weeks! Right now I've been taking lunesta, as it's supposed to not only put but keep you asleep. Not perfect, but a help. It does leave me mentally fuzzy. I seem to have more problems with sleep maintenance. In the past klonopin or ativan helped, but most docs will not rx for more than brief periods. When I was wired on high doses of prednisone, they were a big help. Melatonin helps me, but seems to mess with my blood sugar-- I wake up shaky and starving.
  7. If you search on aorta, you will pull up a series of posts two years ago on a similar topic. I have some eds-type disorder. I was disconcerted as it seemed like my aorta had grown a lot in one year. At the end of the day, people were measuring it at different places, and getting different numbers. I assembled the actual films of my past 3 echos (not just the reports) and got them looked at by a cardiologist who specializes in connective tissue disorders. In my case, he was able to closely compare to see that there really was no change. It sounds like you should maybe try to do the same. Cardiologists will want to see the actual films, which the facilities should have. They can then look themselves to determine any real change vs mismeasurement. I believe up to 3.7 is considered normal. You probably want to have regular echos to make sure it's stable, preferably with a doctor familiar with hereditary connective tissue disorders. Dr. Francomano is my geneticist, and she has me get echoes at Hopkins in pediatric cardiology (I am 44!). This is where the hctd people are, who know how to be precise in people like us. She had Dr. Hal Dietz do the initial comparison. I am following up annually. Mine is currently on the large side of normal (3.4), but had been measured before (incorrectly) at 2.8, so that I thought it had grown 6mm in one year. So i would say the first order of business is to determine whether there really is a change.
  8. sorry i haven't been posting much, but wanted to chime in. i also have vasospastic angina as a probable add on to my dysautonomia. i encountered a lot of resistance to get it worked up and treated. we are all different, but i personally find tht anything that worsens pots, is more likely to trigger chest pain. i need a very delicate balance between cosntriction and dilation. stockings, hydration, in addition to midodrine and florinef help keep me there. but i also take a low dose calcium channel blocker to prevent overconstriction--2.5 amlodipine/norvasc. I've successfully avoided a major episode for about 18 mos, though i get little twinges that settle down if i lie down and drink. we are not simple! and then there is the youngish woman factor, where we more easily get written off. Thinking of you!(Btw, nitro didn't help me. it just worsened my tachy and gave me a headache! we are indeed different!)
  9. I did a similar chronic pain rehab program at RIC in Chicago before my eds diagnosis, and before POTS kicked in. It was helpful in teaching me pacing techniques and some new ways of thinking when I feel really bad. The med approach at RIC was more flexible. They said they wanted us off a lot of meds, but it was actually more flexible. IT was outpatient. I was glad to have done it, but now with my eds and POTS diagnosis don't know how it would have gone. They sort of suspected some form of hypermobility, as I kept getting new injuries, different from the ones I'd come in with!
  10. florinef was a life changer for me. really helps. i hate prednisone, but florinef doesn't affect me in the same way. I take 3/4 of a pill daily in the morning and have for almost three years. My hands and feet get a little puffy on it, but I really don't mind. My bp stays pretty stable on it-- usually around 115/75. Before, it was all over the map. I add extra fluid and salt if I'm having a rough day, but otherwise don't particularly salt or fluid load, other than to make sure I always do have fluids relatively nearby. I'm not cured, but now function at about 85%. I think florinef helped more than midodrine, but takes longer to take effect.
  11. Thanks, you guys, for the validation. It's disappointing, as I'd more or less liked him till this point. I see my gynecologist in about ten days and can see how willing she is to treat hormonally induced insomnia. I continue to use my cpap, and am glad to have it. I tolerate it okay, and it has helped. I have apnea and feel awful when it's not treated. I guess now I know that my current issues are not from the apnea. But if you google menopause and insomnia, it's not an unheard of connection! Geez! Why reach for the psych diagnoses? Perimenopause can have psych effects, but it's not a psychologically induced condition. This doc did rx me lunesta, which I've been taking. IT helps some, but I think I may want to taper off, as it seems to mess with my memory. I do need to work with someone, though, so that I can semi-regularly get sleep. Just a bummer to find a doc whom i thought i could trust, suddenly seem like he doesn't get it. It's not that I'm incapable of a bad mood from time to time, but I don't think that qualifies as depression. I am certainly not depressed in any sustained way. My life has its challenges, but overall things have been looking up. And I can be anxious in certain situations, but I don't think that intermittent nervousness qualifies me for an anxiety diagnosis. I've had far bleaker times in my life when I slept fine!
  12. I've posted here in the past several months about my recent struggles with insomnia. I'm feeling potentially mad at my sleep doctor for how he wrote up the report on my sleep study that I've just received. I can't tell if I'm being paranoid or if I am being written off as a psych case. Should I have a conversation with this doctor, or based on his written report, conclude that he won't get it. Recall that I am in a small town, and it's hard to switch doctors, esp in a small specialty. My problems with insomnia are recent-- the past year or so, esp past 6 months. So my whole life, with whatever ups and downs, I only ever had problems falling asleep when I was in a lot of untreated pain or on high doses of steroids. otherwise, insomnia is not and was not a lifelong problem, but a recent one. I am also a 44 year old woman, whose bad sleep seems to correlate with huge hormonal surges. It is always worse whenever I am around a (now very irregular) period. I am often then wide awake and sweaty. Nothing particularly on my mind. Just wide awake, hot, tired, wired. Seems like a pretty clear smoking gun, no? Autonomic issues and hormones are not a pretty combo. So I had a repeat sleep study to ensure that my sleep problems were not caused or at least aggravated by previously diagnosed apnea, for which I diligently wear my cpap. Apnea can also cause trouble with sleep maintenance, as one regularly wakes up to breathe. Well, I slept minimally during the study, but it does seem that whatever apnea I demonstated was adequately treated with my current pressure. So we can probably rule out the apnea as a cause for my insomnia. That's good to know. But in the written report, the doctor seemed to chalk up my sleep issues to "depression and anxiety." To quote" Other medical problems are listed as ehlers-danlos syndrome, migraines, presumed autonomic insuffuciency, anxiety, and depression." He lists anxiety and depression, when we have never discussed these. I have not discussed these issues with him, and he has never, to my face discussed these. If he thought those were relevant diagnoses, why not bring them up with me in person? He also refers to my autonomic issues as "presumed." Un;less the use of the word "presumed" has some other meaning in medical lingo, I detect a note of skepticism. Why? There is plenty of documentation in my file to support my autonomic issues. I see a cardiologist at the same hospital. I had a positive tilt table test. So why the "presumed"? And if he bothered to be up on recent literature, he would see that a large number of eds patients have some form of autonomic dysfunction. (This is not an exotic diagnosis that hysterical women conjure up as an excuse for the being a psych case??? Sorry for being snarky...) And nowhere in the report does he mention the possible role of night sweats and hormones--but does feel free to list anxiety and depression. This makes me wonder whether I can trust him to treat me, listen to me, etc. Am I being unfair? My medical file is thick enough that his writing this probably will not make a huge impact. I doubt anyone takes the time to read each report. And my pcp knows me well enough to believe me. My pcp does not doubt my autonomic issues, and has shown no sign that he believes the sleep issues, or other issues are caused by depression and anxiety. But the sleep doctor's report does make me wonder if I can work with him.I am not particularly more anxious than usual, when I didn't have insomnia. And I don't think "psych case, till proven otherwise" is a good diagnostic strategy. Why so quick to label me with anxiety and depression and discount my other documented health problems (autonomic, perimenopause)? He could list those as possible sources, but I don't think he should just decide that because my apnea isn't the problem, by exclusion, they must be the cause??? It does make me wonder if I can trust him to get it. Do I give him another chance? I don't really want to have a painful conversation And I know a lot of us on here have had to battle against psych diagnoses, so this is a sore spot! But if I can't work with him, because he can't listen, does not consider the role of perimenopause in my sleep issues, and is ready to put his "presumed" diagnoses in my chart without actually talking to me, then that also stinks. Advice? Am I just being paranoid? Do I give him another chance? If so, how to approach him?
  13. I know it's lousy to have so many things feel wrong at once. I actually find the eds diagnosis really helpful, as it is the underlying explanation for almost all my issues. In my case eds seems to underlie POTS through the cranial cervical issues as well as stretchy veins. Knock on wood, I am generally doing okay these days. But that's only because I've found good docs and physical therapists to help stabilize joints (including my head/neck) and POTS. I see Dr. Francomano once a year, and she is a godsend. She picked up on all kinds of little things. I also get a yearly echocardiogram to keep an eye on my slightly enlarged aortic root, another eds thingy. So far, it's stable. I'm by no means normal, but now function at about 85%--meaning I can work full-time, do some socializing, get some exercise. (I have to be mindful of my limits, though, which do change from time-to-time.) This was not true before. So if there is any way to see her, it's so worth it. No one really knew before how to classify me-- as I'm flexible, but less flexible than many. But things seem to tear and pop out of place too easily. My pelvis and lower back are the sloppiest, loosest, most painful. But they have also improved with a new doc, new exercises, and a good brace.LAst summer I could barely walk. Now I can walk some distance, with my seat cane in hand.
  14. I would check out ednf.org. there are many types of eds. and even if eds affects your vasculature, that doesn't mean you have vascular eds. according to the main eds geneticists, there is no such thing as benign hypermobility. regardless, i would see a geneticist. I see Claire Francomano in Baltimore and she is wonderful. she thinks i have some atypical form of eds that doesn't fit perfectly in given categories. since she is also a researcher, she knows a lot about the blurriness of the categories. good luck!
  15. From what I understand, part of the issue is whether they return the torn part, or try to repair it. Recovery is longer with repair. I think some of the docs, like Dr.Clohisy at Barnes, look to make sure that there is no underlying malalignment of the bones that would predispose you to tears. If so, they like to reposition bones, and that's a big surgery. And if you add any connective tissue instability, it makes the whole thing trickier, esp as he might have to be on crutches for the hip, which would be hard on shoulders!
  16. I have not had this test but may have labral tears. Make sure you get multiple opinions and go to the top people. Labral repairs on hips are relatively new. In the context of a connective tissue disorder, it becomes even trickier. I think there are only five surgeons in the country people really trust to get this right.I saw one of them at Barnes, there's someone in NYC, and someone else in Colorado.
  17. When I started taking florinef, my doc told me that supplementing magnesium was important and would also be a safer way to keep potassium up, rather than take potassium directly. All those minerals work in concert, I guess. My then cardio recommended I boost mg higher, while I was having a lot of pvcs/pacs. She told me that she was comfortable with my going up to 2,000, if my bowels could handle it. My eds doctor also thought that, within limits, a lot of edsers need extra mg. I take magnesium glycinate that doesn't give me diarrhea. My serum and intra-cellular mg are always mid-range. BTW, from what I understand, diastolic dysfunction is tricky to diagnose in stage 1. One doc told me I had it three years ago, before starting florinef. But no other doc (5 echos since) has seen it. I think there may be inter-observer reliability problems with measuring it, when/if it's subtle. I have also had slightly high pulmonary artery systolic pressure-- again before florinef, but it has not gone up, and could be normal for me. It's around 29, 30. I think connective tissue disorders might predispose to that. Again, I will continue to get monitored. Otherwise, the multiple echos and cardiologists I have seen since tell me that my ejection fraction (60-65) is totally normal, my heart is normal sized, and I have small amounts of tricuspid regurgitation, but nothing to write home about. Everyone's heart will have some minor variation. Nothing about the structure of my heart can explain my ans synptoms. And I've had my heart tested every which way, including a catheterization. The main thing I need to watch is the size of my aortic root. It is currently 3.4, and concern grows when it goes over 3.7. It was mismeasured by non eds docs, as it is only 2.6 a little higher up. On edsers, one has to measure at the very base of the root, as that's where most aneurysms occur. Ever so slightly higher, and the number goes down, as that's where the enlargement ends. I now have my echoes done always at the same facility that specializes in connective tissue disorders, where the techs all know exactly where to measure on stretchy types. I was initially concerned about the safety of florinef, given my aorta. After talking to numerous docs, we decided that right now, the benefits vastly outweigh the risks. I would have no life if I went off florinef. My average bps are higher, but I also have far fewer swings both low and high on it. Before florinef I would go between 70/30 to 170/100 in minutes. Now I'm consistently 115/75. Those fluctuations could not have been good for my aorta either. As I said, I don't hold back on salt, but I don't usually salt load, unless I'm having a rough day. BTW, I have never shown up as aldoseterone deficient. I take florinef because of its volume-boosting effects. All my adrenal testing was normal, before florinef. But it was really a miracle drug for me.I initially did not want to take it, as I feared it would be too much like prednisone (which I HATE!0, but the results speak for themselves. I know I may actually have to be more mindful of blood sugar and weight as I age. My fasting values are at the top of normal, and I can tell I don't handle carbs very well. There is T2 diabetes in my family. I try to exercise and avoid refined carbs. But I think sugar may be more damaging to my heart as I age than salt. Sorry if I seem to have reacted strongly. I think long term research and monitoring on us is very important. But I wouldn't want someone to avoid a potentially helpful treatment.
  18. Hard to know what to make of this. I have been on florinef for almost three years, and could not function without it. I was in awful shape before I started,could not sit up, walk around, exercise, work and now I function almost normally. The effect was pretty immediate after I started taking it. I am 44 and do wonder about long-term effects. I have a yearly echocardiogram, which has not changed significantly in 3 years. I do not go out of my way to salt load, but do use more salt if I'm feeling potsier. I take a LOT of magnesium (1600mgs/day, under doctor's supervision), which also balances out my potassium. All of those test in range. My sodium tests at 140 now, my potassium at 4.4 which is in the middle of the normal range. My quality of life matters here. I don't think the salt/florinef issue is one-size-fits-all. I will continue seeing my cardiologist and getting yearly echocardiograms. I also have eds and we are monitoring a slightly enlarged aorta-- which was enlarged before I started meds, and is not any bigger now. I don't think it makes sense to tell all POTS patients to stop using salt and florinef. That may be the case for some of us. I do think we all need careful monitoring, especially as we age, as it seems like long term info on POTS patients is sketchy. BTW, the carotid can look occluded for different reasons. On MRA, mine look a little narrowed, but are fine on ultraound. With the two different tests, it was concluded that my carotid is fine. The doctors said that "turbulent flow" can be misread as stenosis.
  19. Just to add, when I say it gave me back my life, I mean I went from having to stay reclined most of the time, to going back to work full-time, and working out an hour a day. This doesn't mean my life is "normal," but I can do most of what I want to do. Before florinef, I was in pretty bad shape. I was reluctant, because I feared it would be like prednisone, which I do NOT tolerate. It really isn't. Everyone is different, but given the potential benefit, it is probably worth a try.
  20. I'm also very sensitive to meds. Florinef was a miracle for me. I hesitated, but started feeling instantly better on it. I recommend starting with no more than a quarter of a pill, taken in the morning. Give it a week. If you feel somewhat better, but not better enough, keep adding a quarter pill. I take 3/4 of a pill and have for 2.5 years. It really gave me back my life. Initially I might have felt a little bit of a rush an hour after taking, but not anymore. My blood pressure is much more stable on it-- usually 115/75, instead of all over the map. I take magnesium, which indirectly keeps my potassium in check.
  21. Hi, I haven't been posting much lately, but I am someone whose symptoms have included chest pain. I had a really hard time getting that part of the problem treated and addressed, as it is not "textbook." I even got an angiogram (normal) a couple years ago. I take midodrine, florinef, and norvasc, in addition to wearing compression, a neck brace for cranial-cervical instability that is probably the cause for my ans issues. I have found that whatever worsens POTS can provoke chest pain. The best theory anyone has proposed is that my blood vessels freak out when I'm having ans symptoms and overconstrict, causing vasospasms. The amlodipine helps with the spasms. But getting the dosage right was tricky-- I could only tolerate 2.5 mgs. 5 made things worse. FLorinef really helped, as it boosts my blood volume enough that I don't begin the chest pain spiral so quickly. I also did cardiac rehab a couple years ago. I was dropping rather than raising bp when exerting, and very gradual, closely monitored increases in exertion helped to correct this. I also found that I needed to walk on an incline to increase blood return. But it was hard to find a doc who would treat dysautonomia AND the chest pain. Most docs, upon discovering I don't have regular heart disease, would tell me it was nothing. Vasospasms CAN be dangerous, though. Some docs wanted to do a repeat angiogram to see if they could chemically provoke spasms. This seemed really invasive. I found a doctor who was willing to just try the ccb and see if it helped. And indeed it did. For now, things have been relatively stable for two years. The good news is I have only been to the ER for chest pain once in those two years, when initially it seemed constant. I can still get in trouble if I don't stay properly hydrated, stand too long, or am around my period. But have been able to manage. Good luck. You need doctors willing to think outside the box. There are a handful of us here who get chest pain. IT should not be assumed to be benign, just because you are relatively young and female. But you need someone who will treat it as part of the dysautonomia. I think of it as my body's last ditch effort to hold on to upper body circulation by over constricting. If I can keep better blood flow in my thorax, then I don't then over constrict-- at least in my case...
  22. Thanks again, you guys! Brief update. I probably slept 5-6 hours last night, which felt downright luxurious. I tried a tiny bit of melatonin (.5). It gave me a weird head rush and some stomach weirdness, but not longlasting. I can't swear that this is what let me sleep, but I am willing to try again. I finally did hear back from my pcp over email, who said that he had called in an ambien rx, but noone had notified me of this. If melatonin doesn't cut it, I will try. I have to go to a conference from Tuesday to Sunday, and really want to be back on a sleeping schedule. Even five hours may be enough to make me feel a little human. I have always been a reasonably good sleeper, with a tendency to wake often, but could always fall back asleep. I'm sure this recent stretch is perimenopausal hormones added to my ans issues. From my brief internet reading, it sounds like sleep issues are one of the big things that drive perimenopausal women to the brink, even without POTS. Oh joy.
  23. Thanks, you guys. I don't think it could be tolerance, as I only get 5 doses of sonata a month, and at half the normal dose. So that is roughly equivalent to half the normal dose, once per week. I have taken three pills this week, but pretty much in vain. The benadryl has just been this week. I had some big hormonal shift last weekend that seemed to precipitate all this. And maybe the time change confused my body. I'm just really losing it. I hate that I'm getting ignored. My headaches, heart racing, pain, mood, and concentration are all getting worse the longer this goes. I don't know if he is afraid of giving me addictive drugs, but I am not an addictive personality. I've never shown any tendencies to abuse meds or any other substance. I've been seeing him for seven years, and the meds I take now are for ans and allergies.He should know that I would not be pestering him if I were not really struggling.
  24. I am at my wits end. I haven't slept more than three hours a night for the past week. I have had some issues in the past and have apnea, but nothing like this. Some of it may be hormonal, as perimenopause progresses. but i'm going nuts. benadryl does nothing-- makes me more tired but doesn;t put me out. my doc gives me 5 5mg pills of sonata per month, but they are not working, and I now only have one pill left for the next three weeks.. he hasn't returned my recent messages about this. i'm sure that he's busy and that for a "normal" person, a week with minimal sleep is not considered a crisis. but for someone with my health issues, it feels like it is becoming one. I don't know if he is concerned I'm going to become addicted? so part of this is a rant. why can't my doctor call back or answer my emails? does he hope that if he blows me off it will fix itself? in the interim, i guess i just have to resign myself to not sleeping. i have a bottle of melatonin, but am nervous about trying it. It feels like it's getting harder to sleep the longer I don't sleep.
  25. I've had a terrible problem with sweating under my arms for years-- at least since my 20s. (I'm 43). I'm allergic to anti-perspirants, and can only use deodorants, which means hiding the inevitable stains with the right blazer, overshirt, etc. No pastel colored silk shirts for me! Often I have icy hands and drenched armpits. My spouse tells me he can tell how my day was by the extent of the pit stains! I've also started in on perimenopausal hot flashes, but those are different.
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