mkoven

I have a friend without pots who likes it. But she's had two kids. I've heard iuds can be painful on insertion if you've never given birth. Are the hormones in mirena supposed to be safer than the pill?

I'd check in, but those numbers don't sound too high for brief periods. And midodrine has a short duration. When "normals" exercise, their pressure usually increases at least twenty points. I think it matters more what your pressure is over time, unless you're spiking really high. I was told that if I spike 170/90, then i need to take prompt action. But an occasional 140/90 doesn't worry my docs. On midodrine and florienf, I'm usually still at 115/75. (feels a lot better than 80/35!).

I know that there have been many posts recently about the relationships between ans stuff and mast cells. I periodically get very allergic at the same time I'm autonomically unstable-- not always connected, but now two months running, right around my period, when my bp and other ans symptoms are out of wack, my nose itches like crazy, as does my throat. And this is after taking my standard allegra, singulair, nasonex, and saline nasal rinse. I could take benadryl , but then I'll be dopey for the day. In simple, layperson's terms, what would be the connection? It can;t be random. there's really no new allergen. It started yesterday after my treadmill time, and I feel like I'm in intense hayfever mode-- in February! My sister asked if I had a cold, as I sound stuffed up, but I know it's not that, as it's the congestion that comes from intense itching-- like I have to stop my self from rubbing my nose off my face.

that's a hard one. I sometimes just want to put all the medical stuff away and resume more of my nonmedical life, it is so frustrating, esp because it sounds like the causes of your symptoms are complex and not textbook--like a lot of people here! I know I need to sty proactive about getting medical care from my current docs and/or seeking out other docs. but I think it's okay to take brief breaks from it all-- and the length of brief depends on your situation. For me, I start feeling like I'm avoiding if I go for more than a couple days without following up. And if there's something new, acute, or flared going on, esp. if it's potentially serious, then that's even too long. It really helps if you have doctors you like/trust. Since coming to DC on sabbatical, I've been shocked/thrilled by how much more responsive my doctors are. My local pcp schedules hour-long appointments for his ans/eds patients, never rushes me, and respodns to calls or emails within 24 hours himself. Having responsive dotors makes me feel less like just screaming and wanting to avoid it all. I think it's not that my doctors in Illinois didn't care, but were caught up in bureaucratic systems that just made them less responsive. (Returning to Illinois this summer and losing the good team I've assembled here will be VERY hard. )

Hi KAtherine, I'm so sorry to hear this. My family (parents) also don't get it or want to get it, and have decided that my health issues (eds- joints, ans stuff, migraines, etc.) are psychological. It makes me feel furious, sad, lonely and misunderstood. There's a lot of family baggage in my case that predates these issues of people not getting a lot of empathy or understanding for their struggles and my parents feeling threatened or shutting down when other people were struggling. My mom has intermittently shown glimmers of "getting" it, but then will say something that shows she really blames me and "stress" for my difficulties. My dad is the most dismissive. I guess I should be glad that now I'm an adult and am able to get the social and medical support I need without only having to go through them. But it still stinks. But even though I know all that, I still stubbornly want to share with them, have their support, and have them understand. For me, it's so important to know that there are other people who do get it. I don't think I'll ever stop being frustrated and sad. And I still do want relationships with my parents. But I do need to know that there are other people I can turn to--including my dinet friends! It's so hard not to be able to have the people you love be on the same page. Hugs. Michele

I take it around the clock, every four hours night and day. I feel it if I'm late for a dose. It seems to help at consistently the same level. The real help for me was adding florinef, as midodrine alone was a rollercoaster, with it wearing off after 3 hours, and my having to wait another hour. For me, the complement each other.

Not to minimize the problem, but my ans symptoms don't seem to affect my weight. I'm overweight no matter what I do I wish I could drop some.. . I'm on and have almost always been on the heavier side- 5'3, 165. I exercise daily, eat healthy, and I'm stuck. But at least I can say I've been relatively stable between 160-170 for the past six years. there was a brief period when we first moved to Illinois when I was 25 pounds heavier than now. I dropped a bunch of weight after back surgery, and fortunately it didn't come back. Not a diet. I just felt too crummy and had too much pain to eat? I don't know if I have any florinef weight on me currently. But just to say, in my case, my weight doesn't fluctuate much related to dys symptoms. In college I was as low as 133, in my 20s, varied between 145 and 170. I haven't been below 155 in twenty years. when I crash dieted in my teens (bad, I know, I'm over it), I think I did have some early ans symptoms of getting sparkly vision if I got up too fast. But I gave up crash diets years ago....so I know that serious cutbacks don't agree with me. For general health, I wish I could drop some, but not sure how. As I get older, it seems to migrate from my hips to my waist, which I know has cardiovascular negatives. Sigh. So the upshot is I guess ans issues affect us all somewhat differently.

Squats are part of my hip rehab. My pt first just had me get up and down from my chair, squeezing my rear, and making sure knees were aligned over toes. I did this at first with a theraband above my knees, to work on activating all the stabilizing muscles in the hip. I've now progressed to getting up and down from a higher chair on one leg, using arms for support. The key to avoid pain is to squeeze my rear, and lean forward as I rise--so it's the glute muscles rather than the hip joint or the knee joint that are doing most of the work, and keeping everything aligned. We're going for "buns of steel." My gait has actually changed! Since sterngthening my gluts and lengenint my hip flexors, I am now able to use my gluts to push off the stride, with my leg behind me. My hips are still sloshy, but this has helped immensely with my ability to walk with less pain and subluxation. I think of each step as involving my glut muscle-- from heel touch down to toe push off.

Interesting. I've had this when ans stuff and migraines are very flared. Before my sleep apnea was treated, it was all the time. It still happens, but is a lot better. I have used an anti- glare cover on my computer monitor, and sometimes watch tv with my sunglasses and/or colors muted.

Interesting. I've sometimes gotten these if I"ve pushed too hard. When I was younger, prediagnosis, if I went out for an all-day bike-ride with my spouse, he would just be tired, I would feel like I actually had the flu-- but was okay the next morning. I just assumed at the time I'd gotten too much sun-- but I would often get fluish if I pushed too hard. and wondered why i was the only one.

My hr drops that low, and I told my cardiologist, and she wasn't concerned. She said it's only an issue if you're symptomatic-- though technically it's still bradycardic. I start feeling yucky when it hits the low 50s, so that does count as symptomatic for me.

I agree-- don't push yourself to the point of feeling ill. If you can only do 3 before getting unwell, that's where you need to start--or modify your starting/stopping position. Your point of reference can only be yourself. Slowly start with what you can do, and then add teeny increments. This summer i could barely sit up in bed. After better meds, I was able to increase walking time. But I started off at .6/mph on the treadmill, for five minutes. My joints are also a limiting factor, but I can now do 30 minutes on the treadmill, at 2.6 mph, with a 6-12 degree incline. (I find the incline really helps me use my muscles better--both to avoid feeling faint and to keep my pelvis stable). I still have issues around my period, and am not autonomically normal, and have plenty of weirdo symptoms that are probably autonomic, but I now rarely feel presyncopal. When not near my period, I might get the occasional brief wave of wooziness, and I still avoid prolonged static standing, but feel much better. I also have an extensive lowed body strengtehning physical therapy regime designed to stabilize my subluxating hips, but I'm sure the increased muscle helps blood return. Most of those exercises are standing-- and I'm okay as long as I keep moving.

I've heard it can also work as a migraine preventive. I've been taking 200mgs/ day for a year. At first, I felt more energy. Now it's hard to say. I generally had worse migraines a year ago, but many things are different, so wouldn't want to speculate causal relation. I'll keep taking it. Not sure I've been taking a fancy brand. any recommendations?

I'm gradually able to increase speed and decrease incline over time-- and find I react more normally to exercise-- such as sweating profusely when appropriate. There are still moments around my cycle and at the ends of the day when I feel out of breath with a pace that I normally tolerate. Now I just have to keep my joints behaving-- much trigger point and myofascial release. Yesterday I did 2.6/mph at an incline of 8, whereas earlier I had to have an incline of 12-15, but could only go 1.3 mph. Because I wear a hr monitor, I notice that there is a lot of variability day to day in what will raise my hr and how much. I let my hr get as high as 160 and feel okay--again this feels okay, because it's me response to exertion, not just standing. Over time, I can do more before my hr gets that high. ? Walking around outside at a leisurely pace gets me at around 100-110. But standing still is another matter. I have to keep moving.

Let me second the importance of moderation. I have slowly built up to 30 minutes on the treatmill most days, slow speed, steep incline, and lower-body strengthening, and find I ahve more energy generally. but at first, if you do too much, it can wipe you out. I immediately drink a beverage with electrolyes and make sure my heartrate is within ten beats of my baseline before leaving the gym. I don't take my bp cuff, but one could.

I often wear sunglasses to watch tv. I find it surprising that more people don't complain about this, as there are lots of people sensitive to sound/light/flcikering with migraine tendencies who don't have ans issues.

Because I got weekly ( and useless) allergy shots as a kid, I'm pretty mellow about needles, though I still look away when I get stuck. I am always nervous about new meds. Can you call your doc ask ask to start at a smaller dose?

Could you start at a low dose and see how you tolerate it? My doc first put me on .1, and I felt an agitated rush about 30 minutes later. I then restarted at .05 and was okay. significant improvement in symptoms. I'm now on .075 (3/4 pill) in the morning and it seems to work. I think taking the lowest amount of a drug that is effective is the way to go. You could even start on a quarter pill, wait several days, see how you feel, then titrate up. Florinef is a drug that takes a couple weeks to have full effect, but I find it really helps combined with florinef (and compression and exercise). I don't really notice any side effects. My bp is higher, but still fine-- 115/75 instead of 90/50. My electrolytes have been okay. I take supplemental magnesium to help me hold on to potassium. Last check my potassium was 4.1, which is totally normal.

And should you have apnea, the most effective treatment is cpap (continuous positive airway pressure). But getting a sleep study is the fist step to see what's even going on. Apnea is diagnosed if you have more than 5 "episodes"/hour-- of not breathing for more than 10 seconds, or of very shallow breating. They also determine if your oxygen drops, or if the episodes coincide with any changes innheart rhythm or brain activity. Apnea can also be either a mechanical problem (your throat tissues can't hold themselves open) or central (your brain forgets to send the signal to breathe). It's usually a mechanical problem. And although the stereotype is that only overweight middle-aged men with thick necks can have apnea, that is quite incorrect. There are lots of people out there who have it for any number of reasons. A good sleep doc will look at the anatomy of your nose and throat to see if there is some narrowness/blockage. I also have a very narrow/crowded throat, in addition to eds, that makes the tissues floppier. In the end, if you do have apnea, cpap takes some getting used to, but it is a very effective treatment. But some people have a hard time getting used to sleeping with a mask. I took to it pretty quickly and was just so pleased to have a significant improvement in my migraines, acheyness, and energy levels. I was a light snorer, but my husband never noticed me not breathe. I'm 42, female, with a relatively normal sized neck. But I did comlpain to docs several times about waking up gasping for air. And I got dismissed multiple times! I also used to wake up constantly to pee-- another clasic sign, and wake up with the most wretched/wanna die headaches. It turns out that I stopped breathing on average 7 times an hour (mild apnea), but each time was an average of 23 seconds, with as long as 53 secnds. During rem, I had 49 episodes/hour--because when you dream, your body deactivates your muscles even more, givint floppy throat tissues even less support. And my oxygen was dropping into the 80s. I still have some sleep issues, but I now only have to pee once a night, migraines still there but NOTHING like before, and no more gasping or snoring. I also used to have nightmares of being strangled and waking up in a panic--classic! Calling that a psychological issue would totally miss the boat-- my body was appropriately responding to being suffocated! All that stopped with cpap. Some people can lessen apnea by sleeping on their sides, or with a device that keeps their jaw in a position where it is less likely to let the airway close. In my case, I already have jaw issues, and shoulder and hip issues that make either option not good. the upshot is that you can only know if you get tested. and if there is a problem , you should treat it. you'll not only feel better in the immediate, you'll be taking important steps to protect your brain and heart. Oxygen and breathing are good for you! I really didn't think my test would show anything. But getting diagnosed and treated has been one of the best things I've done this year, healthwise.Okay, rant over! Let us know. And if your doc tells you that you couldn't have apnea because you don't look the part, demand to see someone else. No sleep doctor would ignore that complaint. Waking up gasping is classic. Michele

There are a number of us here with both. It may be a coincidence, unless you have eds, which causes my throat to go floppy. Ask your doc for a sleep study--best way to know. Apnea is serious and is rough on the ans of people without pots. Over time, it trashes your system. I find apneasupport.org a great resource.

Hi Maxine, I know how rotten those erratic beats are. My doctor checked my electrolytes, and while they were okay, did suggest I up my magnesium. Not sure if it's a coincidence or a trend, but the arrhythmias have been improved the last couple days. Though I'm still getting some-- significantly fewer. I am now taking 1200mgs of magnesium glycinate a day, 600 am, 600 pm. Should probably only do it with your doc's blessing, as that's way more magnesium than the rda. Hope things improve soon! Michele

what is the arch support like?

I get migraines, sometimes with aura, sometimes without, sometimes just the aura. Tight muscles in my neck can set one off. My hormones are a huge trigger. I never really had headaches until 3-4 years ago- I'm 42. Some of my migraines were triggered by sleep apnea. Cpap treatment has been a remarkable relief--in the severity, frequency, esp of the auras. I used to wake up in the middle of the night with a horrendous headache (hurt too much to have my head touch the pillow), with the ceiling flickering as if there were a strobe light or spinning, my ear ringing, wanting to throw up. That type of headache stopped completely when I startedtreatment for apnea. I still get a bad, can't-leave-the-house migraine twice a month, and mild/annoying one-sided headaches several times a week. Sometimes I can zap a headache early on with exercise--so I think blood flow is part of the issue. If it's a bad menstrual migraine, I haven't found anything that works yet. I can't take triptans.

As I said in the earlier post, with eds, I have very finicky feet and ankles, and need maximal stability. I wear birkenstock clogs of different ilks. Not really elegant, but the only thing that agrees with my feet.

I once tried a pair on and feared that with my unstable, eds ankles, I might do more harm than good. Cool concept though. I've been in physical therapy for my unstable hips and have really had to build up muscle--maybe that's helping?