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Everything posted by iheartcats

  1. My allergies are over the top lately - really acting up so they have me on Zyrtec, Benadryl when needed at night, and Nasonex. Now they say I really need to add Singulair so I pick up the RX this evening. I've read about it online and it does seem to help some people with severe allergies, and you know how if your allergies are bad, POTS is acting up even more. Lately I've had to drag myself out of bed in the morning, literally dragging myself into work, and am forgetting more than usual (no good at a job!). I think if I can get my allergies back under control it may help. I'm not sleeping well with the coughing and such. They don't think I have asthma, they think my allergies are so bad and irritating it's causing asthma-like cough. So Singulair - who's tried it and what did it do?
  2. TLC's Mom: I have random hives that drive me crazy. Heat and cold and this and that bring them up. Even if I'm upset I turn into a tomato. They are checking me for EDS and I see a geneticist in June so we'll see how that goes. Interesting to know, though, that the annoying random hives could just be a side effect of this.
  3. I have perfumes I can wear and some detergents I can use. Others bother me like mad! I can't use harsh chemicals for cleaning, even when 'young and well' - they've always been a bother. I don't think they are good for *anyone,* though. The other day I walked through a make-up department and some lady squirted stinky perfume. I was hot and broke out in hives...I went outside and they went away in 10 minutes. That was unusual for me...but the heat, smell, crowds just combined, I think. I also hate the smell of smoke and too much pollen gets me really sneezy.
  4. I often have a high ANA but we can't pin point what is causing it. My POTS is usually around and I feel pretty bad if I don't take my medicines, so I am on those indefinitely. I really have no clue what is going on and it frustrates me. Sjögren's, Lupus, a high-ANA that will never result in anything? It's annoying, and I wish it were easier to diagnose these things.
  5. I'm still on my Mestinon 30mg/ two times a day. I've tried more and less and this seems a happy dose for me. I think it helps a little. Not tremendously, but if I feel 10% better on it, it's worth it. I had some icky digestive issues for about a week and then things settled down.
  6. When I was first figuring things out - there were a couple of times I drove to the ER and sat there in the car. Tried to calm down, tried to be hydrated, and I didn't have to actually go in. I know that sounds weird...but I wasn't familiar with my symptoms yet and just wasn't sure what was going on, but I learned over time I would have occasional spells that would calm down. I'm probably TOO good at ignoring them. Until your child grows up? I feel for you. It's so, so hard to monitor someone else, I'm sure. I wish you well! I'm hoping the ER would be more understanding about a child then some of the adults have been treated (although that's terrible for you guys!).
  7. This all works for me too. You could always talk to your doctor about Afrin (it's very short-term use, 3-5 days is the max I always hear) and maybe try the first dose in the doctor's office? It really helped me through my last infection. I hadn't ever used it until then. Boy, what a difference! I could breath!
  8. It seems more prevelant than I thought it would be! We're hoping I had a mild case since I've had a vaccine (sort of like when you have a flu vaccine and catch a flu but it's not 'as bad.') I think I'm starting week 4. Week 3 was the worst coughing and it's improving but I have to use Mucinex and Benadryl which I usually don't take to keep things more 'dry.' My chest/bronchi are sore, I get winded more easily, and am more tired than usual (but can't sleep well!). I tried to get into my Doctor again but they are booked up for two weeks - something is going around. And since I'm on the antibiotic that covers Whooping Cough, they aren't recommending I go to urgent care. It's probably too late for a swab and there's not much to do except take the antibiotic and keep my allergies under control and try to stop the post-nasal drip which aggravates things. The timing is impeccable, though. I thank everyone for your advice and understanding. I don't want people at work to think I'm sick (I'm wondering what people thought of the poor kids with their buckets! Pour souls!). It's awful because you can feel OK (but with chest pain, a bit shortness of breath from the irritation) but then the coughing/gasping comes on. Andrea - I will PM you tomorrow. Thank you!
  9. Chaos - I hope they got me on antibiotics soon enough to have some help. Not being able to breath and falling to the floor is so scary! It is so weird to think Whooping Cough is going around again of all things.
  10. I either have Whooping Cough or Bronchitis, the Doctor thinks. It does not feel exactly like Bronchitis, I've had it before. I've had horrible coughs where I can't catch my breath and sound somewhat funny - nasally and like a little horn. It's weird. I started with a bad cold and sore throat and fever and it's progressed to this weird cough-thing. Tonight I ate a Flinstone Vitamin and it 'tickled' my throat. This lead to a violent choking/not able to catch my breath/try to cough fit where I had to go down on the floor. Very abnormal for me. I'm now taking Zyrtec + Benadryl (per my Doctor, to help dry things up). I am on an antibiotic to help in case it's bacterial or Whooping Cough, too. I've looked online and this isn't unheard of, and it's often the Whooping Cough or Post-Nasal drip. Has anyone dealt with this? It's really stressful because I start a new job next week and I hope this fades more. I wish I'd have had a Tetanus Booster in the last five years...that supposedly helps stop Whooping Cough.
  11. Thanks for the tip. I didn't think of this. Yeast infections are the worst and I was wondering how I could avoid that suffering!
  12. I had a bad cold for about 10 days, my worse in many, many years. The congestion won't leave so my PCP prescribed Clarithromycin Wednesday. They are huge pills and I've been afraid to take them. But now I am having coughing fits and can't catch my breath. So I really need to start these. I think Bronchitis has settled on me. I had a busy, active day today and I really feel it tonight (coughing, shortness of breath, chest hurts and coughing up mucous). I guess I need reassurance that his antibiotic has been used by other POTSY's. I've had a bad couple of weeks and now this.
  13. okay...im still scared, but i am gonna try it today and i guess see what happens. i am not on florinef just midodrine. what does of midodrine are you on? i am on 15mg, 15mg, 10mg. ----I take Midodrine 10mg, 5mg, 5mg usually.
  14. I didn't notice much of a blood pressure drop with my 20/mg throughout the day. I was already taking Midodrine when I started it and my BP seems about the same. As for Pregnancy, talk to a specialist (or a high-risk OB/GYN). I'd check out a high-risk OB/GYN if you have one in your area just in case (my OB/GYN recommended one in case I ever want a kid...).
  15. Let us know how things go. How frustrating that things have been under control for you and then wham! everything is in chaos. Like others have said, hopefully once you move through the pregnancy things will improve but I know how important it is to keep you healthy and stable to that point! At least the Doctor admitted you need further help - that's a good Doctor! Take care of yourself.
  16. This medicine has been so beneficial to me. I recently tried to switch to another Beta Blocker and learned my lesson! I am on 20mg/three times a day. I take it about every 6 hours (with Midodrine each time). I assume without Midodrine I might need less...I don't know. But I like it with the Midodrine while that is available! My Cardio said 20mg/three times a day is a relative small dose. I think the 'average' use is 120-240mg a day so the dose I'm on after 2+ years is only 1/2 to a 1/4 of that. I don't like time-released drugs personally. They tend to act weird with me but they do work for others. It's one of those things you might just have to try and adjust. Adjusting is such a big this for us POTSY folk!
  17. I am back on Inderal/Propranolol. It was more helpful to me...I was shaky on the Metoprolol. Maybe that's because of all the fluid loss, though, but I was more dizzy, too. It just didn't seem to work as well. My Cardiologist said we could try it again someday to make SURE that was the cause, but no need to rock the boat if Propranolol is helping. I've talked to other POTSIES and Propranolol seems to help us most. I wonder what secret thing it does to the brain? I'm already feeling better back on it, even with a cold. It's a huge improvement for me. And yes, I just switched the next day because it's a 'similar' drug. I'm glad I'm back on Propranolol.
  18. I never head a headache from Mestinon - just 'potty' issues for a few days when I started. How are your sinuses? I get horrible allergy headaches! And hormonal headaches at the end of my pills every three months. Also...sometimes crazy smells can trigger them for me. Weird, I know.
  19. Sorry to hear this. So your POTS (the first eight years)- was it moderate? Or debilitating? Mine is mild-to-moderate right now on medications depending on the day so I'm able mostly to function (like I can work a desk job, but am too worn out to do much after work so it's not a real normal life). Then after your first child you were 'cured' mostly? What were your symptoms before the first child? I wonder what would cause such a flare-up with a second pregnancy? I know pregnancy can trigger POTS, people have talked about that. But at this level? Can you contact Dr. Grubb in Ohio since everyone recommends him as the top specialist? I've not seen him myself but people really like him and maybe your Doctor can contact him for advice? Good luck to you and let us know how things go. POTS is baffling.
  20. I think I'm going back to Propranonol tomorrow and pretend this never happened. Laugh! But I'm shaky and have a much higher standing heart rate on Metoprolol. If I really need to be on a selective one in the future it sure will take some dose and time adjustment, I think.
  21. I've been on Propranolol for 1.5 years and it was really helping. I've been on Metoprolol for a couple of days and feel awful. I'm waiting to hear back from the Specialist's nurse (but they are so swamped it probably won't be for a couple of days) and I really want to go back on the Propranolol. I don't know if I can just start taking it again and if it will help as much? I'm kind of miserable on Metoprolol.
  22. I think my latte does contribute a bit... But I just can't give that one up! I hate the stomach symptoms of POTS so much.
  23. I switched this weekend from Propranolol to Metoprolol. I was on 20mg of Propranolol three times a day and now am on 25mg of Metoprolol twice a day. I don't think I like the Metoprolol as much...the Pharmacist thinks I vomited from the Metoprolol because it is 'a common side effect' when your body is adjusting to it. (Nice). I really wanted to be on a selective Beta Blocker as that is overall safer with allergies...but I need to feel OK too. I was told I should be able to go back to Propranolol with no real issues if the new one doesn't work out. Let us hope! I was feeling decent on Propranolol. Now I don't know if I don't think the new one is working as well because of the incident yesterday and I am just extra POTSY today or not.
  24. I started Metoprolol this morning and was nauseous today. I drank fluids but didn't think to eat, really. Just a Nutri-Grain bar was all I could tolerate. I ran errands with my spouse and vomited twice badly in the car (I guess the motion sent me over). I called the Pharmacist because the main side effects listed nausea and vomiting for Metoprolol. She said this is fairly common and your body has to adjust, try to take it a couple more days and contact my physician's nurse early next week. I will do this, but it was terrible. Now I don't know if the Metoprolol isn't working or if I'm just a lot more POTSY due to the vomiting. The Pharmacist also said I must eat so I'm cooking some chicken and potatoes now (nothing else sounds appetizing). I'm trying to drink water and now V8 to rehydrate myself but still shaky. What a terrible 'common' side effect, no? I guess it is probably worse on us with POTS/OI. Has anyone had similar issues with a BB?
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