mkoven

I know many have posted that there symptoms are worse around their periods. I'm beginning to wonder whether for it's not just pms, but whether my symptoms were triggered by perimenopause. I'm 40 and first thought I might faint at 35. Last summer, 39, the heart racing and near-faints happen regularly. My periods are still regular, but the lead-up is increasingly miserable. Aren't weird autonomic symptoms even common in some "normal" perimenopausal women? Does anyone know if there is research about these "later life" hormonal shifts and pots/ncs? right now, it feels like I'm particularly symptomatic half the month--the second half through the first day of two of my period. After that, I can feel almost normal, till midcycle. Yes this is pms, but I never had pms like this when I was younger-- at most a couple hours of feeling unwell till my mid30s. For these two weeks of the the month: heart racing, hot flashes, weird bp fluctuations, headaches, nausea, itchy and superallergic, urinary frequency, on-edge/irritable, lethargic, greater joint pain and instability. Anyone know if this is supposed to settle down eventually? I never tolerated the pill when I was younger and have a family history of breast cancer, so not sure that is a good option for me...

I take zyrtec regularly with no problem. I haven't taken it with ambien but have with ativan-- no issues to report.

I wanted to add the importance of being "ergonomic" for me in keeping these headaches somewhat at bay. I've had someone come look at my computer setup to make sure everything is at the right height. I also need to be careful when I read that I'm not looking down. I also don't do well if my head is turned to the side, for example when talking to someone next to me. I have to move my chair so that I'm looking straight at them. My pillow is also key. I sleep on my back with a u-shaped cervical pillow. I get into the most trouble when I've been in some less-than-optimal posture for too long. That said, this advice lessens but doesn't eliminate those headaches.

I get that pretty often. When it's really bad, I have to sleep in a recliner, to lessen the pressure on the back of my head. I've been led to believe that it's muscles spasming and pinching nerves. If my trapezius and sternocleidomastoid (sp?) (muscles from shoulders to neck) are overworked, it happens more. Head forward work or anything that lets me hike up my shoulders worsens it. But I haven't had my neck imaged in a long time-- this was just my doc's presumptive diagnosis. I probably have some instability and/or bulging in there somewhere too. It's awful. My sympathy.

Get better soon, y'hear?! I'm sure Wilbur is wondering where his mama's lap went. Thinking of you and wishing you a speedy recovery. Michele

Hi Flop, Is this the same doctor who vetoed a wheelchair? When my doctor's advice sounds wrong, if I really don't think I'm harming myself, I don't comply! I would definitely do the stockings, salt, and fluids until you are stabilized. Maybe that makes me a "bad patient," but you know your body and what you can handle. If he had said to me, "Try and see what it's like to cut back," and let me play around with my tolerance, that's a different matter. Premenstrually I am MUCH worse-- have to wear stockings and drink lots of tomato juice. I've been skipping the stockings, because I just can't bear them in the heat, and have been doing better. But I now have multiple levels of compression and length (knee to waist high) should I flare, and I keep a pair in my bag. As soon as I feel the symptoms worsen, I put them on. Another example of my "non-compliance"-- with eds, my pelvis is very unstable. I've worn a brace for four years now. My doctor periodically tells me to lay off the brace, as he fears I'm weakening the muscles. But every time I try, I get hurt. It may be a "crutch," but it lets me be more active. At this point I'm the one who has to decide my own tolerance...

Hi Nina, I'm sending fast-healing thoughts your way! Best, Michele

My ribs also literally subluxate or pop somewhat out of place off the sternum, which definitely causes chest pain for me. I have eds, so I guess I shouldn't be surprised. If I go to the spot where ribs attach to sternum and press, I can feel it not flush with the sternum. The thing that has helped me the most is massage. My neck, chest, and shoulder muscles get really tight and will pull me out. (I can't otherwise safely stretch without injuring myself there-- but if you don't have eds, there are good stretches for surrounding muscles.) Certain upper body movements will flare things up. I have gotten help from chiropractors who put the ribs back in when it was really bad, but it seems so violent, and then I pop out again soon after because the muscles tug the ribs out again. At least with massage, the muscles stay relaxed, and the rib usually just gently slides back in on its own. It's a little sore after, but not bad.

Oh man! I have the usual pollen, mold, and dust allergies. Pollen is BAD. I'm also allergic to most non-human mammals (cats, dogs, rabbits, horses). Too many fruits and vegetables to list, peanuts, oysters, a middle-eastern spice called sumac (sp?), adhesives(surgical tape, ekg pads), iodine contrast, gadolinium, some 30 odd drugs. I also have dermatographism, oral allergy syndrome, and even break out in hives when there's too much vibration, or when it's cold and I walk my legs get itchy and hivey. I am on regular antihistamines, and carry benadryl for as-needed use. I have two epipens in my purse, as I"ve had some anaphylaxis--fortunately never needed.

Interesting-- I guess I'd become cynical. So is there anything you'd recommend I not say or volunteer-- or just lay it on the line? One thing I'm concerned about is they've been paying for some relatively alternative stuff (prolotherapy), and am afraid that if they think too hard about it, they'll start refusing to pay...

My health insurance has had a nurse "case manager" contact me-- phone msg and letter to "help" me to "play an active role in my health care," and make sure my "treatment plan" makes sense. ??? Am I right to be cynical and think little good can come of this? My hunch is that my ppo insurance has noticed that I'm costing them a lot. They can't dump me, so they want to "help" me to cost them less. I was actually a little surprised, as my medical ordeals have been somewhat less recetnly. I haven't been to the ER since October, no surgeries in three years. So I don't know if they're looking at a multi-year trend? I do get prolotherapy injections regularly which are expensive... Any experience with people like this? It's hard to imagine that some hired gun for the company would have much useful to add, given that I have non-typical health issues (eds, ncs/pots, weird allergies, tuberous sclerosis, and some strange symptoms probably related to the above...)... No where did it say I had to speak to her, just a strong suggestion. So I think I'm not going to. If she tracks me down, I'll have to think about how to respond...

I've heard of such treatments helping to heal stubborn wounds that won't heal. I don't remember the details, but I met a woman who was undergoing some type of oxygen treatment at Johns Hopkins ( a legitimate place) for wound healing.

Any idea why they were so absolute? It was an allergist who told me I could combine antihistamines and told me how high I could go--and not a local one. I went up to chicago and saw a big-wig. She's used to treating people who regularly go into anaphylaxis and is trying to get them off prednisone-- my regimen came from her. Different people react differently to antihistamines, but it seems strange to just say no.... at my worst I was taking 360 allegra, 20 zyrtec, 10 singulair, and 50 benadryl with no problem. And I'd do it again, rather than go back on prednisone, which was much worse for my pots.

Under an allergist's supervision, I take zyrtec, allegra, and singulair, all every day. I can add benadryl as needed for breakthrough symptoms. My eyes are still itchy and I may need drops. It's really hard to override allergic reactions when my body's hellbent on itching! When it's really bad, I wear one of those blue masks over my nose and mouth. I run filters at home, keep inside. And I'm sympathetic about oral allergy stuff... I've just had to say goodbye to cherries. Sigh.

Claritin really doesn't touch my allergies. I like allegra, zyrtec, and singulair. I take benadryl on top of these if I have breakthrough symptoms.

I got a run on my second wearing of a pair of stockings and called the company. They told me that they'd send another pair-- never did though. I find a big difference between brands. But now, when they run, I give up and buy more. I usually end up paying out of pocket, because my insurance only covers jobst... go figure.

I feel okay today. It is hard to decide when to go in. I guess I tell myself that if it feels like something I've felt before, that's been thoroughly worked up, and judged to be the usual ribs/reflux/pots, then I'd rather skip it. The er is such a miserable experience and very little comes of it. If I felt something different, I'd go in. I've had the usual tests: stress echo, 2 event recorders, ekg, bloodwork, etc. The only thing that's ever come through is tachycardia, but normal rhythm. The ep didn't do a tilt table as there's no way my eds joints could tolerate standing still without serious pain, and my symptoms matched. (I can walk MUCH longer than I can stand. Static postures are murder on my poor hips, pelvis, knees, and feet.) He thought a clear case of ncs with my description of when symptoms occur (standing, peeing, prolonged sitting, heat and allergies, period, etc.) I've been trying to drink, drink, drink and salt it up. And today I'm back to my "normal." (It's nice to have an excuse to eat salt, when everyone else I know has to moderate. I just tell them that I don' have a license to eat fat and sugar with my salt-- so it's not a total greenlight on junkfood. My new drinks are peach propel and "virgin maries"-- tomato juice with worcestshire(sp?) sauce and tabasco.)

Thanks, you guys. I am feeling better. I do have some knee-highs, and have to say they don't work quite as well, but I guess better than not wearing anything. I have visible varicose veins on my thighs, so I probably need them higher. But I know--better some than none. I just wish that they breathed better. Even my toes get itchy! My husband has been gone for a week and comes back today. The apartment is a sty and I should tidy up some... Thanks, Michele

I've had chest pain on and off today. It's so hard to tell whether it's ribs, reflux, pots/ncs or something new, as I know I have the first three. I hate it. Hubby's out of town, which stresses me out. I guess it's also been really hot and I was in the sun, which didn't help. Not wearing the stockings (because it's too hot and I"m getting over a yeast infection), and my bp is lowish (90/60). I think I'm okay. It feels similar to other times when I've gone to the ER and they haven't found anything, so I felt semi-sure that it was okay to take a pass. Movement seemed to make some piece of it worse. And I'm acidic. And lightheaded-- so probably all 3 (ribs/acid/pots)? Oy.

I use a walker with a fold-down seat. It may be overkill if you don't have joint pain, but I really like it. Michele

I've had no problems with singulair. I believe Churg Strauss is quite rare.

Instead of benadryl, some people take vistaril. Could you try oral vistaril in a doctor's office to see how you react? I really like having something on hand to thwart a reaction. I was also reluctant to try zyrtec, but I gotta say that it helps. Really no side effects for me. I would limit steroids, like decadron. I was on prednisone for 6 weeks last year while we were trying to figure out what was going on, and it really messed me up for months. Sometimes there is no choice, but it made my pots/ncs MUCH worse while I weaned. When I am in hyperallergic mode, stuff I"m normally only mildly allergic to can really set me off. For example, I'm normally only a little allergic to dust and mold. But in the middle of all these other reactions, my body would flip out if I went in a slightly dusty room. We then had our apartment intensely cleaned, got dust covers for pillows/mattress, hepa air cleaners, washed bed clothes in hot water weekly. When things were bad, I would also wear one of those dust masks. We also got an allergy-grade filter for out hvac unit. These things all seemed to calm things down a little. I also got in the habit of showering before bed to wash away any pollen in my hair. I"m not an allergist, but probably anything you can do to reduce your exposure to things you are allergic to-- food and not-- the better.

I've had some really strange allergic responses that have headed in the anaphlactic direction. I've posted before about this, as it seems that sometimes my pots/ncs and allergies are closely linked. I also think perimenopausal hormones are a big factor, though no doc could really link. I just know that my symptoms were/are MUCH worse premenstrually. I went through a period of several months last year when I couldn't eat much of anything but chicken and rice before itching everywhere and having my throat tighten and wanting to faint. We never really got to the bottom of it. I went on prednisone. I was then switched to large amounts of antihistamines that I still take. I have high IGE, oral allergy syndrome, and positive rast tests to a number of envinornmental allergens. It quieted down last year around the time the weather cooled down. And I've posted recently that I've been getting more post-eating episodes now that it's spring again. Part of me thinks that when my environmental allergies are worse, I then become hyperreactive to everything. I wish I had some more insight. It definitely seems to me that my pots/ncs, hormones, and generally allergic nature feed into each other and exacerbate each other. I'm hoping I can avoid a repeat of last year. there are various pieces to the puzzle that haven't been put togehter. In the interim, I take my antihistamines, and benadryl prn. I also carry epipens, but haven't used. Hope you get some answers. Michele

Hi everyone, I just wanted to say that I'm half way Groopman's "How Doctors Think," and I really like it. It's about the ways doctors arrive at diagnoses and misdiagnoses. As many of us struggle with how to get good care, it's a great, empowering book that humanizes patients and doctors as well as suggesting how to collaborate constructively. It's been well reviewed in a number of places. Michele

I've had vertigo before, but this feels really different. Much more potsy.