iheartcats

My brother tolerates Lexapro. I have a feeling some type of Dysautonomia runs in the family or at least the capability to trigger it...I've not tried one yet. My former EP mentioned Cymbalta but never got around to trying it. I'll bring this up when I see a specialist in November at Stanford. I'm curious now!

I had an allergist who was fine with BB and injections where I used to live. I moved before I got to start. My current allergist will not do testing or injections on anyone on a BB. They wanted to do 'new tests' to see what I'm allergic to out here. Well I know it'll be a similar ragweed/mold/pollen so it's not worth it for me to go off my BB. I feel awful and they want me off for days. I can't, especially since I just had tests in January and I'll just deal with seasonal allergies for now. I would run this by your Cardio/EP (I did) and then verify with your Allergist. It made me feel better knowing my doctors were in sync.

My Beta Blocker (2 to 3 times a day, 20mg of Propranonol) has helped me with these. If I have an argument or something (I already get hives from being too emotionally upset) I get flustered and red and horrible feeling with a pounding HR. But the Beta Blocker has helped the everyday annoying surges and to control my HR so I can be more comfortable. My doctor says that the 40mg-60mg I take is fairly low...many people take two to three times that much. My dose seems to be enough to help me (but not put my HR in the 60s which my PCP commented that people on BBs for heart disease go for). I just need them to help with Tachy/Surges/that horrible feeling that your wound up inside. Thanks for posting this. Sometimes I feel alone with this weird symptom! Any idea why BBs help my surges, anyone? Anyone else use them for this? And can someone explain how anti-depressants help? I've never tried one.

My sleep schedule has always been off a bit but POTS made it worse. I tend to start staying up later and later and getting up later and later. I can still thankfully get by on 6-8 hours sleep (probably because I used to be ok on 5-7)? They say everyone's is different. Anyway. When I notice I'm getting way off (3am - 11am) I take an Ambien to reset myself. Seems to help and might have to do it for a couple of nights. This is a Godsend when I'm working, helpful still when I'm not. I'm a tad concerned my new docs won't prescribe Ambien (sigh...like I need more anxiety) but I never go through more than 30 in six months. I don't know why some DRs are so particular about things like Ambien when one clearly uses it occasionally as needed and it's very beneficial.

Stress...anxiety...hormones...heat...humidity...all make it a bit worse some days, even on a BB. Sometimes it'll be bad once in a while for no reason I can find! I take Midodrine to raise my BP a bit with my BB (Propranonol). This keeps my BP from going too low.

Wow, I'm really surprised to find all the special diets you have all tried! I guess if we find something that helps us improve a little, it is better than the opposite. I do get sensitive to various things (had a huge rash to Cashews, but no Cashew allergy on the skin test). I eat a heck of a lot o dairy. Way too much milk, I'm sure, but I don't have any side effects that I can tell. It wouldn't hurt to cut back on that, too, though. I do feel bloated/tired after a lot of carbs and it sends my POTS raging once in a while. It may just be the blood rush/glucose drop but if it's making me feel bad just as well cut them from my diet. Now I'm balancing what to do. I cook dinner when I'm not working or working less than my spouse who is no good in the kitchen. He likes his pasta and bread, so will have to figure this out! Is rice safe to eat? I like my rice/chicken/broccoli once a week.

That's so scary. I just hate how pharma/healthcare is tied to users/profits. This is helping you immensely and likely others...just because it's not a big seller they may remove it. That's frustrating. Have you discussed other meds with your doctor? Will the pacemaker give you the same results? I wish you well. Such sad news!

Thank you everyone! I do want to try this. I should lower carbs anyway so will have to limit gluten-free breads. Can't eat nuts, so will figure out proteins. I think it's interesting some people are helped/others aren't in my searches. I guess it's the whole POTS and it's underlying issues are so diverse.

I can feel mine pounding sometimes when I lie down. It's unnerving at times, but seems to vary from day to day.

As I'm on a frustration roll this week (goodness)...I'm grasping for straws to get better. Since I seem to be so sensitve to things and have allergies, I'm wondering about going gluten-free a month. I love pasta, bread, cakes, etc but I need to lose weight anyway. Sigh. So it's a good time to try this at least to see if there's some improvement. Has anyone tried this? Any good results? Even on the FAQ it says Celiac/Gluten could play into POTS flare-ups so I may give it a go in September. It'll be like early Lent if I don't starve.

One of the reasons we moved was for my health/weather. It's so costly out here I want my stable weather. LOL But, we do get the rare hot day(s) and it's no fun, I tell you, no fun. Mine I get from the shower/heat/etc. aren't really itchy like I'd get from a real allergic reaction like rolling in dust mites. Hmmm. If it's auto immune like my prior Allergist thinks we'll probably never know why! Louisana is hot. I've visted. Very hot. I don't know how the vampires manage.

Usually they are...but I've been through allergy tests and my prior allergist thought I exhibited hives that were an autoimmune reaction, rather than an allergic reaction. Of course it can't be normal, right? I'm on Zyrtec + Zantac for them and get them from hot showers almost daily. I didn't realize the high heat would trigger them but maybe they do. I'm seeing a new allergist in a couple weeks so I will ask in case anyone gets weird symptoms like this. Benadryl sometimes helps for these types of random outbreaks, but it makes me so tired I only take it if they are unbearable.

Unfortuantely, it's hot hot hot today and I forgot how bad hot affects me. It's like 88 inside (we have no air in SF) and I'm just drinking G2, staring at my Cat, and dealing. I did notice I have hives (hadn't eaten anything in a couple hours), just sitting around, and I'm pinker and then hives on mostly my neck/chest. I looked up heat hives and they look like something that just 'is' and there isn't a known cause in about 70% of cases...I know I'm extra POTSY today so I don't know if that was a trigger or not. As many of you know I get weird hives now and then (my PCP just handed me an allergists card when I mentioned it!)...but man, these seem to worsen with the heat! I'm Irish-pale so I look like a tomato.

Please don't feel that you could offend someone for being child-free. We should all be able to make decisions that pertain to us and our bodies and lives. Some people don't seem to take the time to think about what having a child entails and they are just 'cute and fun' and having a child is a huge commitment of time, resources, love, and care if you're going to do it right. So it's wonderful, I think, you are thinking things through! My husband and I decided to not have children. When we were first married, we always assumed we would about 10 years down the road (I was married in college, quite young)...but it never happened. I cared a lot for my siblings growing up and I'd frankly had enough of child-rearing and babysitting by age 19 and liked the break. Then...it just didn't happen. I never really had the urge. I feel if one has a child (and this is my belief) you have to give it your all. The child needs every advantage it can have to be a successful, well-adjusted contributor to society and didn't know if I was ready to put myself second yet. Then I got POTS (again, right around when many women start thinking about kids in the late 20s/early 30s). I could not handle a child now. I know that for sure. I have to work soon and can barely handle that and a fate of a human isn't in my hands! I don't think having kids is for everyone. I know others who don't want kids. I know others who have kids and don't want them, which is worse and I feel bad for that situation. Some people are thrilled with their kids, which is great for them. I have nothing against kids. Love my nieces and nephew to bits. Fun little things. But not for me full-time. There are a lot of child-free web sites and support groups: http://www.childfree.net/ And try not to worry about meeting someone down the road who might want kids. You have to do what's best for you. What if you meet a guy who doesn't want children, too? Or already has children? There are many options out there, one never knows. I have the Mirena which I'm really liking. I had to get permission to get it (IUD) but POTS + BCP isn't the greatest combo because of the blood pressure issues so it was approved. 5 years and I have little to no monthly periods. If you change your mind, it comes out and you're still fertile! It lasts five years. Good luck to you and remember, you have to do what is best but there's plenty to read up on if you're curious!

I never thought about the psychiatrist. I'll have to check into my coverage for that. I think my PCP is partly baffled because I have two distinct sets of symptoms. I don't want them, believe me, but I have them. If I woke up feeling well tomorrow, I'd be thrilled to only go to the doctor for an emergency and a physical every two years. Heck. I'd be thrilled with that! It is stressful for us to have to go through this, an I'm not alone! I've known people with CFS and boy, they were treated pretty terribly until the last few years. It felt good to vent.

I hope it does its thing to give you milder flu symptoms - I think that's what it is supposed to do. Rest. Drink Fluids. Take Care of Yourself. Hope you both get well quickly!

Sometimes I have the same blood test come back differently every 6 months! I'm in no way in control over this at all so it just baffles the doctors even more. I've had a handful of wonderful doctors, and hope my new Rheumetologist is as kind and helpful as my old one. I go into these things positive, but we'll see. I get frustrated and have a hard time describing some of my major symptoms (I too ignore minor things more than I should). Fatigue isn't tiredness like sleeping, it's more like walking through molasses. And my muscle/joint pain. It moves around. It's annoying and new. And it just hurts. Randomly. Hard to pin-point and doctors like things to be pin-pointed.

I research a lot between doctor appointments. You are lucky to have 10 minutes of face time if that much, so I bring in my notes, summaries, etc. This is especially important right now as I've moved across country and had to change providers across the board. I am now getting the feeling (whether intentional or not) that I'm a bit of a hypochondriac. I know I am not. I guess I was fortunate enough to have gone to my prior doctors for years before Dysautonomia and while I did have an SVT/Ablation years ago, that was recorded and dealt with. Otherwise, I had the normal stuff with allergy issues and hives, but nothing too extreme. I wasn't in for every little thing or begging to be medicated. They did not treat me as a hypochondriac. Coming INTO new doctors with a diagnosis...well, at least I have that diagnosis backing me up, but these doctors don't know I was pretty normal up until POTS. It's so involved, and I want to feel better, I spend a lot of time digging through articles and experiences online. I had one print out I was interested in (to avoid getting more unnecessary tests this certain one was suggested first) and my PCP was like "Where is that from - I don't even know if it's accurate" - well...I was asking about it because I wanted to know if it was worth it not because I'm a hypochondriac. Anyway, I'm being referred to a Rheumotologist now to see if they have more insight. But my symptoms can change suddenly. I can lose symptoms and gain new ones, and I guess that might look like hypochondria. I'm not USED to it and I am getting so frustrated, but it seems a lot of us have dealt with it. It feels better to get this out there. Is there any way I should approach my new doctors about this? That this wasn't always my normal?

Thanks fellow cat lover! I went through the article again and it though it gives the amt of women that were studied it doesn't actually say how many of them died. I plan on emailing the author of this article. I need more specifics. Such as was it a particular anti-depressant? Or do they all carry the same risk? One can never have too many cats, I feel...although I only can handle one right now! Please let us know if the author emails you back. It's hard to compare...if they say twice as many, is that 3 women in 63k to 6 women in 63k, or 75 women in 63k to 150 women in 63k? I have a Journalism Degree so I hate when all the facts aren't presented! I take a Beta Blocker even though I have some awful allergy issues going on. My Allergist/Cardio felt the benefits outweighed the risks (150+ BPM/Chest Pain/Fatigue from HR) is a horrible daily thing to live with. Life isn't perfect on the BB, but it's better. And boy, was I worried to start the BB but am glad I did! I read a lot, too, and think I drive some of my physicians bananas so don't feel bad.

I think it really depends on the numbers and your comfort with risk. I took a medicine where there was a big headline of increase of stroke/death. When I took it in my hands to research it and took a report from an established hospital to my former and wonderful PCP, she agreed with my continued use as I understood the numbers. A three-fold increase ended up being about 60 women out of 100,000 instead of 20 women out of 100,000. It's '3-fold' - 20 X 3 = 60 but that's media scare tactic/bad math in my humble opinion. In the grand scheme of life, that small percent increase overall was worth my benefit. Can you find the numbers? X women out of 63000 in a normal population, to X women out of 63000 in this study and discuss this with your doctor?

Thank you Janey!

My last job was really close to home, relatively, so that was a big bonus. Now I realize I may not be so fortunate, but it was helpful. It's worth keeping in mind when searching! It's less of a daily stress = shorter commute.

It's so hard to sleep with it tilted, I think. Goodness help me, but I'd rather try exercising to help deconditioning than being forced to sleep funny 6-9 hours a day. :/ If it does help some people and they can sleep, though, it's probably worth it.

I'm in the same situation so if you would like to chat through things, you can always PM me. It's so difficult. I'm looking but in my field in this market it's probably a good 4-6 months until I find something reasonable. I do marketing so I need a part-time or around 40 hours a week (no crazy OT) where I can have minimal to no travel and sit. I can't take a standing job, I know my limits. So maybe you can do what I've done - decide what your basic expectations are for a position and go from there. You aren't going to get work overnight so maybe while looking you can further investigate treatment and what works for you. During my last round of employment I, surprisingly, found I felt better earlier in the day the earlier I got up. I was surprised. This wasn't constant, but about 80% true. You know we all have bad days. The hardest part is it takes a year to get on FMLA (Family Medical Leave Act) at a full time job. That was a long wait for me last job...but at least when you reach that point you can take your doctor appointments, treatments, etc. without putting your job in jeopardy. People mention disability...if we found a job with LT Disability and things will went downhill at least we may be able to resort to that eventually. But again, many jobs I know require 12 months on the job for pre-existing conditions for LTD. Maybe someone else has more info on this? And I believe you have to have a good doctor backing you up. Good luck to you and know you aren't alone - I'm dealing with this and others are, too. I tell myself if I get a job, I'll do as well as I can for as long as I can and go from there. It's all one can do.

This really stood out to me, as mine are so random: Why this autoantibody triggers hives only intermittently is unknown. Does MCAD have more consistent allergic triggers? I really want the blood tests because my allergist in the Midwest said an allergist here would want to do a full set of tests because of different allergens. It was painful, annoying, and costly and I'd rather not do it if I don't have to. I'll let you know what I find out. I was surprised by this article too because my random hives are driving me crazy!