iheartcats

Oh Goodness! It's about a day later and they are finally gone. Whew. My Zyrtec is due in about 5 hours (they told me not to take it yesterday, just take Benadryl, but I am usually OK with both!) but I might take it soon. And get back on normal schedule tomorrow. Interesting. Maybe that's why the lipstick was so problematic (ingestion) rather than just a face cream or something. Butter! How awful! I love butter!

I have to test all my products, too...I know what brands/items tend to be OK for me overall and I should stick with them. I can wear some perfumes. Some make me itch, sneeze and headache...but I have the handful I can wear. I love makeup and perfume. Always have. Some people aren't into it (waves at Firewatcher)...I know people like that and it's a personal preference. I just don't want POTS to come between myself and something I really enjoy (I used to do make-up for amateur theaters, friends/family events, etc). It is kind of a hobby, I'd say. I'd never had a product give me such a bad reaction. I wonder if the lipstick scent was partly an essential oil. I don't do well with essential oils (but am OK with some normal fragrance sprays and lotions). Glad I'm not alone in this. I'm just not going to buy any more of that brand and carry on. Fortunately the Benadryl seemed to kick in quickly and I'm better now (about a day later). No more hives! Until something else bothers me! LOL And I don't even take Benadryl when I get random hives from heat/eating something normal/etc. They just go away. These lipstick hives were a different beast.

My hives are still showing up 8 hours after my bad allergic reaction (when they Benadryl nears the 4 hour mark and is starting to wear off a few pop out). I'm going to try to hold off to 5 hours and see if they stay mild. They aren't nearly as bad, and otherwise I'm just tired with a slight stomach ache (think I need to eat, too...ugh). This was my worst reaction in years. The doctors office told me to take Benadryl tonight and go back to Zyrtec tomorrow. My Zyrtec isn't due until tomorrow evening (I take it at dinner). If I take a Benadryl around 8AM, taking a Zyrtec around 4pm is OK, right? I've taken Benadryl AFTER Zyrtec before, but never before. The Benadryl box says 4-6 hours for using it, so I assume 6 hours after it's pretty worn off. Thanks for your help. I have a fairly busy weekend and want this mess cleared up. I'm so upset. PS: How long can hives show up from one reaction? Edit: They are not BUTTER. They are BETTER. Brain Fog POTS! Allergic reactions do this!

I've been having many more bodyaches than usual. It's not normal pain - but throbbing pains in my bones. I brought it up with my PCP and he's sending me to a Rheumotologist. It can be worse for me if I don't move enough (ironic, eh?). I need to get myself moving more, I think, as the aches are getting worse.

That's cute! I'm forcing myself to sit up and be social. Benadryl sure makes you drowsy and thirsty! I'll be glad to be back on Zyrtec tomorrow. I noticed on the lipstick that the fragrance ingredient was in the middle (not toward the bottom) so whatever it was (and I found it somewhat stinky) might have really activated a bad allergic reaction. I think I'll email the company. I compared a lot of the ingredients to other things I use and the two big ones that stood out are fragrance and bees wax. Can one be allergic to bees wax? I know it was the lipstick. It happened a few seconds after putting it on. Thanks for everyone's advice and for listening. I didn't need this to happen this busy weekend but I'm starting to feel a bit better but very tired.

Luckily I found the receipt - I can exchange it for a product I use often for skin care that I'm halfway through. Something practical that doesn't give me rashes. I'm glad I am not the only one who has flare-ups from random things. I think my family is a bit annoyed, but I can't make this up. Wish I was! But I was full of hives.

Benadryl is helping the hives...but of course not the POTS flare. I have a busy weekend. I wish I wouldn't have purchased this darn lipstick, but it was so pretty. I must stick to my main brands! I'm still a little itchy, but tolerable. It's so weird how some brands are fine, then another is a huge flare up of this magnitude.

Doctor Office told me to just take Benadryl tonight and resume Zyrtec tomorrow - is this typical? They said I can take two Benadryl before bed (50MG) or one every 4 hours (say at 9pm and 1am)... I guess I can take my Zyrtec a few hours early tomorrow then get back on my 6pm schedule. I don't want to take a Benadryl in the AM tomorrow. Will be too tired. :X Benadryl makes me SO THIRSTY! Boo.

I just put on a new Givenchy lipstick (not cheap and I wear their perfume)...I like a makeup treat once in a while. Well, 5 seconds after putting it on I hived out all over my chest/torso. I scrubbed it off (my lips are burning, probably a combo from the reaction PLUS intensive scrubbing)...and I took a Benadryl. The hives are improving, but feeling like crap now and I have stuff to do tonight (tired, shaky, dizzy...you know how this type of stuff sets off our POTS). I read the ingredients...nothing out of the ordinary. Even the 'colors' are similar to what I usually wear. The only thing I can think of is the fragrance? No clue. I tried it on my hand successfully at the store, but as soon as I put it all over my lips - HIVES. This was the worst hive flare-up I've had in a while. I am due for my Zyrtec around 7:30pm and just took a Benadryl. I can't find my Benadryl box. You can safely take a second Benadryl 6 hours later, correct? I know once I take a Benadryl AFTER Zytect I'll zonk out, but I'd rather be safe than sorry. I'm really stressing over this. LIPSTICK? CHEST/TORSO HIVES?

Mine is so old "brand" isn't made (for the non-timed release version)...old as in a long-expired patent. Well I hope the generic works well enough! I guess the plus is I'm already on a generic so maybe another generic won't be so bad. And I don't like timed-release drugs. They just don't ever seem to work right for me. I like being able to adjust the dose with the standard pills. I know some people are allergic to meds because of fillers (like your hives, maybe?). Maybe I can find out the fillers just to be safe!

Hey Everyone - My Propranolol Beta Blocker has been a big help. It's the generic of Inderal and I was on "Nort" brand since January with no real issues. My local pharmacy (and now mail-in pharmacy which I'm switching to as it saves me money) only carry "Teva." I tried searching about this online, but just got the list of the few manufacturers that make Propranolol. I know it's a very common drug, so I am hoping this change in generic isn't too drastic on my system. My EP said when I had another generic switch, he preferred I got it at 3-month supplies as at least I'd have the same thing in my system for three months. Is anyone using the Teva brand? Has anyone noticed a big difference in Propranolol generic?

This Website is helpful: http://www.histrelief.com/phdi/p1.nsf/supp...ment∂=2 I have a lot of those symptoms. I'll bring this up with my allergist in a couple weeks and see what he says.

My goodness. This might be what helps to cause some of my random hives (outside of heat/steam/etc.). I must look more into this. Thank you!

I take a Beta Blocker with Zyrtec & Zantac...plus the occasional Benadryl amongst other things. Can you see or phone your doctor to talk about taking 10mg of Zyrtec? That's a common dose in the USA. That's what they sell over the counter here so I would ask as soon as possible if it's helping! You can also ask about your Beta Blocker - but didn't your doctor look at your medication list first before prescribing? I always make sure my doctors know what I am on. Maybe you can call your doctor to see if the Beta Blocker you are taking is OK with Zyrtec. I don't even get drowsy from 10mg of Zyrtec. I think it took about a week or so to adjust.

Let us know if you get the tattoo! I'll get mine eventually as it's something I've wanted for a very long time...probably will stick to two colors and black. My POTS flares up if I look at it funny sometimes, so it's more of the patch test/making sure I'm not allergic thing for me. Didn't know black ink wasn't reactive so that's good to know...I can always go B&W.

I've taken Zyrtec daily for a couple of years. I used to take Claritin but it lost it's effectiveness on me. It's a big help as I have seasonal and household allergies, too. Zyrtec is probably something I'll have to take indefinitely as I cannot tolerate allergy shots right now. I'm really resistant to new medication, but Zyrtec is so helpful I'm very glad I use it. For my weird hives I get randomly, I take a daily Zantac (150mg)...if they get really bad I can go to 300mg but I'm holding off as long as I can so I have room to grow. I've also taken an occasional Benadryl or a hive flare-up when it's uncomfortable to sleep/relax (per my doctor). It does make me drowsy.

Bellamia - I know what you mean - it just goes on and on sometimes. At least you have an appointment. Let us know what they say! I have a local allergy appointment in 2 weeks where I'd like to have an IGE test to help figure out my random hives. We'll see. I still can't figure things out, but it looks like some of us are getting there, so you can, too!

From what I understand, the two medicines do the same thing, but they are different brands. Someone please clarify if I'm misinformed, but I did research a while back. It's not covered for me...and it's off-label use for POTS from what I've been told (in the States, anyway)...so I haven't used it. It's just far too $$$ when it works for some and not others and has some serious side effects. I'd like more info from people who have used/are using it, too.

I'm considering a tattoo and I'd want an allergy test first. I hear some shops will do this. Tell them the colors you want and somehow figure out how to do a mini-patch test. Otherwise I'm scared to get a 5" by 8" tattoo in case my body doesn't like the ink! The pain...depends on the spot. Obviously some spots hurt worse than others but I can't see it lasting. You might feel crappy for a few hours.

Let us know! I grew up in a lyme-heavy area and I read it could lie dormant for years, so one never knows. I remember flicking off ticks as a kid. Obviously there's a lot of controversy, but like you said...it could be something SIMILAR to lyme. We all know medicine hasn't found and solved everything out there yet! Thanks for posting, this is something I'd been reading a lot about lately. If I don't get more improvement soon, I'm considering flying back to see my old (open minded) EP about this. I feel a low-dose antibiotic for a while isn't a huge deal compared to other meds. I know people who've done it for acne!

Same here. I get nervous at doctor stuff and that always ups mine a bit, too!

I was having all types of abnormal symptoms in 2007. I'd had an ablation for an extra electrical pathway in 2005, but that is relatively common and it was obviously not POTS (a few incidents my heart got 'stuck' in the 240+ mode for no reason and that was the primary issue). I had a bad, horrible, yucky flu in February 2007. Worst I ever had. Then I got weird symptoms: noticed I had a high HR in the AM after walking from the parking lot to work and a bit dizzy standing up. I was laid off later that year (stress!) and noticed while out running errands in the summer I would get bad tachy. I had a nice PCP and she noted it was 140 and sent me to the first EP who couldn't find anything. I also had to pee a lot...I've always had to pee a lot (darn bladder) but this was different. Sudden, urgent, frequent and thirsty. I saw a urologist who could find nothing. He was very nice, but also baffled. I called my old Cardio and he suggested an implant as I told him I got high HRs in the SHOWER and couldn't leave a holter on. I didn't want to get an implant at that time, though. Surgery. Ugh. So tachy, dizziness, extreme shower tachy, thirst, dizziness, fatigue and a lot of peeing later I went back to my EP who did my ablation 'just in case.' He said you have POTS. I'm like what is THAT (and of course I have something with a dorky name, right)? I Googled' a bit and had seen something about having constant tachychardia, but mine wasn't constant. I'd say I went in clueless and he told me it was rare and to check out the Internet (it had helped others), do research on it, etc. Nice, smart EP. My PCP was relieved I had something that tied ALL my symptoms together. I've had other doctors ask if I was diagnosed or if I'd talked about POTS first. I'm like...ummm no. I'd never heard of this rare disease. I was diagnosed without ever hearing POTS. Doctors can ask odd questions. But now I know what I have, of course I'm going to read research papers, talk to others, want to see what helps, etc. I wish doctors WOULD understand that. Cancer patients get support. Alcoholics get support. Dieters get support. And there are many, many others. I'm not trying to completely treat myself, but I feel I have the right to be involved since I know what I'm dealing with now. Thanks for asking! Curious to see everyone's response!

Tachy - I don't know how comfortable a PA would be with my 'weird' mix of meds (although they are not weird for a Dysautonomia patient). My Chicago EP knows caffeine works for me in the AM and moderate amounts, as needed. He says that's OK. Some people it helps, others it makes worse. Regarding Stanford, I go in November. You should at least make an appointment. I know 3-4 months goes by faster than one thinks, sometimes. You can always cancel, too. But the sooner you book it, the sooner you go. I'm going to tell them after a long trial of different meds, my stuff is working now and what else can be done to improve myself. I'm not willing at this time to dump my 3 meds. Mestinon does help a bit and I only have to take 30mg/twice a day now! Very small dose. So you have not been officially diagnosed yet? That's what you're running into? That might take a Stanford visit. Once your diagnosed I think it'll be easier to get treatment. Frustrating, I know.

The Doctor who is managing my meds is in Chicago. He wrote a letter to take to my PCP that I need to maintain these Meds. I'm slightly worried Stanford won't agree (even though I feel 60% better ON the medications). They asked when I made the appointment what I was on and said my meds are fairly standard for my POTS diagnosis. So I hope they don't want to change too much, too fast. I guess I will say this to them. I need to get back to work so we can't do a ton of changes at once. Small steps, please! I don't know what I'd have done without my Chicago EP...I had an appointment with Dr. Grubb last March but was canceled by them about two weeks before I went...then I had to move in May so I never got to see him! I was so close to that important appointment. I understand what you are going through, believe me. I don't like to convince new doctors that I really need the meds I'm already ON. Sometimes one gets the feeling doctors want to recheck things to make sure you should be on these meds...I've been through 18 months of trial and error to get where I am at. And I understand about help now. I had a hard time finding a PCP in SF. Everyone wanted to stick me with a Physician's Assistant, even when I tried to explain I'm really a case that requires and MD even though I'd rather not have POTS!

I'm seeing a specialist at Stanford for the first time in November. I've had issues finding a doctor who deals with Dysautonomia/POTS here so I just am waiting to see Dr. Friday. I've already been diagnosed with POTS, but not what kind or if there is something else I should be checked out for. Any reason you don't want to go to Stanford? I called UCSF and they didn't seem too interested in helping match me with an EP/Cardio. I actually felt brushed off and was told "Any Cardio can deal with that" and that I didn't need an EP (I was seeing an EP in Chicago). Please let us know if you find someone!