iheartcats

Within about a minute or two of taking my first Minocycline, I started to get flushed and then noticed I had hives on my arm/chest/shoulders. I noticed my wrist first as it was bright red and getting larger and larger. So I took a 25mg/Benadryl (I'd already taken a Zyrtec at 5pm) and called my PCP. He said no more Minocycline and I can take another Benadryl in an hour or so, then 50mg every eight hours even though I took the Zyrtec at 5pm. I'm probably 50% better on hives, but he said they could last one or two days. My chest also feels tight. I also have a stomach ache (which could be POTS or Allergic Reaction), am dizzy, and stressed. I had no idea I'd have such a bad reaction to Minocycline. Am I just going to be really tired for taking 25mg of Benadryl at 8:45pm and 10:45pm? Usually I do 4 hours between, not 2. But I'm very itch, uncomfortable and crappy feeling.

I wish I knew my hormones would go this insane! Well, I've decided I'll start these two tomorrow: Minocycline - One Month Use - 100mg, Oral Altralin Gel - .05% - Once A Day, Face Gel Topical I personally can't do two topical creams that are new on the same day. The Derm said it should be fine...but should be isn't will be. I'm so sensitive (more now with POTS, I think) I'd rather do one at a time. Sometimes it's hard to explain so I'll just do it the way I feel comfortable. :/ I guess the plus is I get to try Mioncycline!

I just think I'm out of balance and if POTS is messing with hormones, well, that's no good. Insurance doesn't cover one RX and boy it's a fortune so I'm really bummed about this and want to get it under control. I'm 'splurging' on it - I shouldn't it - but my skin clearing up means a lot to me. It's just a topical I won't be able to continue after this tube because of the cost.

No idea But I just mentioned you in another thread and then you popped up so thought that was funny. Hope someone can help you figure it out --- I go insane trying to look up what lab results mean.

Not a fun experience...but I hear that about research doctors. I've heard some things from people in the field, even, that makes you wonder why some people even think about seeing patients. If it makes you feel better, I am very pleased with my Midodrine/Propranonol combination. They've made a world of difference to me. My former EP and I were amused because it seems like you're doing one thing (lowering BP with Pro. and raising it with Mid.). But I get the benefit of reduced tachy with my Propranonol even though I need some Midodrine to raise my BP. It works for me! Can you work with your PCP on trying the medications? If the 'consultant' suggested them, hopefully you have a good PCP who can work with you on trying them. At least to get something out of the visit. Hang in there - I tried Propranonol because of Firewatcher (thank you FW!).

I went to a new allergist here - he was nice and seemed to know what he was talking about. The good news since I'm 40-50% better on a Beta Blocker, he doesn't think I have MCAD. That's a relief. I don't have spontaneous 'flushing' I have spontaneous 'hives' and he says there is a difference. He did do the skin writing thing and I had hives from it. He is switching me from Ranitidince/Zantac (ugh because I just bought this) to Pepcid (generic name I'm unsure of). He said this is often more helpful for random chronic hives like I have. Also if my hives are really acting up I can take one 10mg Zyrtec AM and one PM. He doesn't think my hives is directly related to POTS. It's somewhat common and he thinks I'd have the hives issue with or without POTS after he asked me a lot of questions. I'm supposed to take cooler showers, avoid berries, citrus fruits, tomatoes, and shellfish as they can make chronic hives worse. I sometimes eat tomato sauce, the others I usually don't. Well, orange juice but I can avoid that. Don't tell on me for my pasta sauce, guys. Has anyone here taking Pepcid? It sounds similar to Zantac so I'm not that concerned about it. I just am hoping it controls the Hives more!

I'm looking for work - so you give me hope! Good luck and I'm sure you'll get through...!

I've recently had a horrible skin flare of infected, painful cysts. Usually my skin is great. Well not for the past two weeks! I had to get 6 Cortisone injections and the Dermatologist said it's likely Stress + Hormonal issues that caused this. They are pretty bad and very painful and now that I'm off the pill, could POTS be messing with my hormones? I was on the pill 12+ years and things were OK. Now my hormones must be going INSANE. He's putting me on: Minocycline - One Month Use - 100mg, Oral Altralin Gel - .05% - Once A Day, Face Gel Topical BenzaClin Gel - Once A Day, Face Gel Topical I'm not as worried about the topical gels, minus the annoyance and redness they can cause plus having to wear a high sunscreen daily. Taking a month of antibiotics - I'm running it by my Cardio but the Derm said it usually is a mild antibiotic and doesn't interfere with my other meds. I guess if I need it, I need it. I haven't taken antibiotics in a long time. He usually prescribes a medicine that lowers testosterone that also ends up being a DIURETIC but he said no way for me! I must agree with that one.

I didn't take your comment badly - I just meant doctors who think like this! I've had some experiences with arrogance from doctors before and it's a sore spot. LOL No worries! I'm very much not a person with an addictive personality and my most recent doctors new this. So much a relief! I don't like taking any meds, believe me, but we have to function. And I agree. I have to decide what is worth it for me. I just won't take anything handed out. I weigh the benefits/harm. And HA about Zoloft. That's awful. Those aren't drugs to play with at all!

I will let you know! They poor sneakers...I know what you mean! I just don't think this type of pain is 'normal.' I hope the Rheumy or Specialist can pinpoint something. Advil doesn't seem to help much, so I rarely use a pain medicine.

Futurehope - I read the Cleveland Clinic Web Chat transcript from the other day. It looks like sleeping meds/narcotics should be avoided for Dysautonomia. Here's the line: "anniekins: I have read that using opiates and some other medications can cause or make dysautonomia symptoms worse. If this is true would it be likely to make symptoms better if these drugs were stopped? Speaker-_Dr__Fredrick_Jaeger: Narcotics, pain medicine, sleeping medications all may worsen the autonomic system including causing low blood pressure and affecting bowel and bladder activity and are best avoided." Like I said, I take Ambien once in a while (maybe 3-4 times a month at most?)...and I don't see worse symptoms. I've not had to take narcotics for anything since POTS fortunately. But what do we do? One never knows when they'll need a narcotic for something that happens. Also, bouts of insomnia make me worse...whereas an Ambien once in a while keeps things together and I sleep better. I wasn't familiar with Roofies so I looked them up - they can treat severe insomnia and should be used short-term or on occasion. They have a lot of bad illegal use...but so do other drugs. I just don't like a medication I use responsibly and rarely to be labeled as a bad/addict drug because others abuse it. If people here I take Ambien they are like YOU take THAT? OH! I'm like...it's a medication I use rarely...30 last me over 6 months. Definitely not abusing it!

These are very good ideas! No - I cannot draw but I looked up a body map so I'll keep a chart of where/when I hurt and what parts hurt. Such a good thought! I personally don't want to try any new medicine right now. I personally feel like I'm on enough and am still trying to settle on my current mix before throwing anything new in. Especially when I know how a new medicine can mess things up. Doctors think I'm paranoid, I'm sure, but I've had too many bad experiences! I'm seeing a POTS specialist in November so I suppose I can take what I learn to her and go from there. I just hope it's nothing bad!

I have to take my occasional Ambien or my sleep would be horrible. I seem to get off on my sleeping time...I'll eventually be up all night. It helps 'reset' things. Also, if I'm overly anxious/worked up it also helps me sleep. As for Narcotics, I don't think I've had to take Tylenol 3 or Vicodin since my Wisdom Teeth removal years ago, before POTS. But the Ambien seems to be OK. I may be a tad more tachy the next day but that could be from dehydration overnight, stress from not sleeping well before, etc. Nothing really out of the ordinary though. Does anyone use Sleeping Medication or Narcotics without issue? Why does Cleveland Clinic think it's so bad? My EP thinks my sleep is important and knows I take Ambien sometimes.

My muscle/body pain has really increased rather dramatically over the last couple of months. It may just be POTS as I know others have it and have discussed it on the board. (Just POTS...ha) Since I'm having more deep aches and have had positive ANA in the past, I've been referred to a Rheumy. What should I be prepared to ask and share? It's not like POTS is typical. Regarding the baseline pain - say you poke yourself on your arm not very hard - similar to a light massage level - this hurts. Lightly squeezing really hurts on my arms and legs, too. I barely have to press on my shoulder blade area and that hurts a lot. It seems improbable, but I am not exaggerating.

I was JUST going to post something like this - seriously! I've had a random awful outbreak of cystic acne and I've never had skin problems. My skin has received compliments my entire life and this month it went crazy! Maybe it's just timing with hormones (I changed BCP a few months back)...I hope it's just a bump in the road. I do have dry/sensitive skin issues (Aveeno lotion helps after my shower). Since my acne actually HURTS and not just cosmetic I could a dermatologist and they made an appointment for me. I'll let you know how it goes. I really don't know if POTS would cause this since it's a somewhat common issue. I hope not! I need to get it under control.

Stuff below 40 wasn't great for me - get below 20 and I did really bad. The freezing Midwestern winter mornings getting to work with below 0 windchill made my tachy worse than summer! I don't think my circulation was working too great in the 'super cold' periods. I had to bundle up more than ever with POTS and still couldn't keep my hands and feet warm. It's one of the reasons I had to move. I don't know if I could've got through another winter.

I just don't know - can you see a neurologist (of your choice) with all these records and information? You need to ask what can and can't be ruled out and it'd have to be a doctor who will listen to your input. I know how hard that can be. Hugs!

I had Xanax for use for a stressful family situation I had to deal with - it didn't help much. I took 1/2 the lowest dose at first, then a full lowest dose. Just not a lot of help. Other people I talked to love Xanax. It didn't really do anything too negative. I was a bit more tachy during that time, but it was probably due to the added stress I was under. I'm sensitive to some meds, too, so the low dose is the way to goo. You can always add. I only took mine as needed, and not very often at that. If you take them daily for a while (and for most people that's probably a longer time than POTS people...we should be careful!) you have to taper off. From what I understand (from when I took them) the smaller the dose, the better regarding side effects.

I feel your pain. Been there and expect to be there again. I am not sure how I'll handle things at my next job - but I'm leaning toward the less they know, the better. I'm usually not able to do after work events/drinking/etc. Just no energy. I feel as long as my boss knows, that's sufficient. Boy I hate the crap one gets from co-workers but I've grown a thicker skin thanks to the board. Forgot to add: I'd trade POTS for the ability to have to do social outings with co-workers! Or work 50-60 hours a week! I'd rather be healthy! I hate that people assume I'm lazy and/or feel above them for not wanting to be more social. It's something most won't understand until they end up in our shoes...one never knows where life will lead them and I am thankful I've always been kind and understanding. At least I don't feel like a hypocrite now!

Come to think of it, I was diagnosed with IBS in my early to mid twenties. POTS didn't come on til a few years later. IBS improved, but still had a flare-up now and again. Nexium helped the IBS somehow. It improved and I was pretty decent minus allergy issues which affect a large part of the population. Then POTS came along. My digestion is OK now, it has it's days, but nothing awful. I'd rather have IBS than POTS though.

My Vitamin D was great when my POTS was at its worse (a few months after diagnosis). Even the Endo I saw at the time was like your Vitamin D is great (above 70, I believe) and to keep it up. From her comment, I assume Vitamin D that's too low can make things worse (worse than I was! Agh!), but it didn't make me well.

I agree - one new med at a time is key for those of us who are reactive. I even only try one new product at a time (like lipstick!) I'm serious - after I had a bad outbreak of hives on my face that required cortisone cream my former dermatologist said only try one new product at a time (including face cream, sunscreen, etc). He said he sees a lot of reactions to fragrance in products, especially in higher end brands! So one new thing at a time is a good policy to follow. I have read Beta Blockers make MCAD worse...and I feel BETTER on my Beta Blocker. My hives are no worse than they were pre-Beta Blocker (about the same, and still as random). So I personally feel it's likely not MCAD for me. Maybe histamine intolerance. Maybe just crazy ANS/Autoimmune stuff. So if the Zyrtec is making you feel better - and you said you've been on Beta Blockers for a while - I'd discuss keeping on the 10mg Zyrtec dose for now. We really have to learn what makes us function (and my, personally, even if there is a slight increase of risk I need to live my life). Hang in there and let us know if you can see an Allergist! Some things I think we'll never quite figure out. My former allergist said he sees this most frequently in women (tends to fit me, I guess): Definition By Mayo Clinic staff Chronic hives, also known as urticaria, are batches of raised, red or white itchy welts (wheals) of various sizes that appear and disappear. While most cases of hives go away within a few weeks or less, for some people they are a long-term problem. Chronic hives are defined as hives that last more than six weeks or hives that go away, but recur frequently. In most cases of chronic hives, a cause is never clearly identified. In some cases, chronic hives may be related to an underlying autoimmune disorder, such as thyroid disease or lupus. While the underlying cause of chronic hives is usually not identified, treatment can help with symptoms. For many people, antihistamine medications provide the best relief.

I'm on a Beta Blocker and Zyrtec and carry an epi-pen (which I've never had to use). I don't have Mastycytosis (they did that serum test) and the allergist I was working with thinks I do have some autoimmune issues with allergies/hives. But he never said MCAD and wasn't familiar with it. My Beta Blocker helps so much (and I take a low dose) that I'm still on it...even though the epi-pen won't be as effective. My allergist felt fairly confident I'd likely not have to use the epi-pen since I've not had that extreme of a reaction yet so let's hope! I think it's awful some of us have to juggle POTS with allergy/histamine issues because of contradictions. I'm seeing a new allergist this week so I'll let you know if I get any new insight on what I'm dealing with. I hope you can see an allergist, too, but it sounds like you're having a difficult time getting treated.

Were you really ill anytime in the previous few months before symptoms started? My POTS started a couple months after a super severe flu (that I've traced it back to, anyway). Does anything run in your family that you know of? I'm more stable on meds - I was doing bad before my Beta Blocker (and I just have to take a low dose to make life more bearable) so it's probably worth you seeing a specialist. Stanford has a POTS specialist I'm seeing in November (she's about 2-3 months out for appointments). It's worth booking an appointment (as long as you remember to cancel if you don't want to go). She's on the list on the DINET home page. My first symptoms I noticed were high heart rates for no reason when walking around, having to pee all the time and I wasn't pregnant!, and some dizziness. Now my symptoms vary and my allergies are worse - POTS is bizarre like that, I feel, because the ANS system gets messed up. I hope you can find some answers here. The first thing I did was increase salt intake and drink more G2. That helped a bit. I think the biggest thing it helped was lessen the dizziness and fatigue. I have similar blood pressure like you - mine can run a little low and I take Midodrine to bump it up to normal because of the Beta Blocker. But I think my Midodrine helps constrict my blood vessels more than anything.

I've taken Zyrtec for years...before that Claritin for years...and before that Allegra for years. This was long before POTS, even...POTS has just made my allergies worse OR I am more histamine sensitive possibly? I'm not sure. But I now have hives often from various things that make no sense and are very uncomfortable so I take Zantac too. I take 10mg Zyrtec at night and 150mg Zantac at night, and am allowed the occasional Benadryl for a bad hive outbreak, especially when I notice any issues with breathing. Maybe you can see an Allergist? 10mg of Zyrtec is a standard dose and it doesn't make me tired and I've not had any problems with it. I'm sure my allergies would be much worse without it! I hope you can see someone you can discuss your POTS + Allergies with. I think we have symptoms that aren't completely normal.