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iheartcats

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Everything posted by iheartcats

  1. I have some good news for once, my breathing tests came back 'normal' (had asthma as a kid, sometimes have exercise-induced incidents in adulthood, but not having exercised in a while with POTS haven't had any). So overall I am showing no asthmatic symptoms, I guess! Yeah! This means I can start Mestinon (going to after X-mas, I hate starting something new before I have a big event to deal with). So I hope that helps something...trying to stay positive and will give it 'time' to work. I hear it can take an adjustment period (gastro issues, etc.) that can improve. It also means I may have the option of doing a Beta Blocker. Now...what do Beta Blockers do exactly? I am currently on: Midodrine (10mg or 5mg 3 times daily, as needed), Seasonique (BCP), Allegra 180 Daily (Allergy), Xanax .25mg (as needed, rarely take), & a multi-vitamin with iron. I take Nasacort for allergies in the Spring/Fall. How would a Beta Blocker fit in the mix? Would it interfere with anything else? I'm not exactly sure what they DO, but I am quite tachy (heart rate 'average' was 100 today, yuck, because I had a lot to do - I wear a Polar Monitor and it's always over 100 standing). I would love to have a lower HR. It wears me out being so high. Thanks for helping me out.
  2. I'm trying to quit saying POTS because people think it's funny/weird/don't take it seriously. It's just an added annoyance. It's a debilitating disease, so it's not to be taken lightly. There is some level of disability people experience even with Mild POTS & it just gets worse the more severe it is, not to mention flare-ups. Sometimes I'll just say ANS-related condition called Postural Orthastatic Tachychardia Syndrome. POTS is ridiculous, too many other connotations with it. It's just my luck to get something with such a silly name.
  3. It's frustrating, isn't it? I am feeling a bit better POTS wise, but still in other pain and can't take Codeine or the muscle relaxers. So just dealing. But I think it sent my system in overdrive at first. Just trying to take it easy. Be careful out there...last thing any of us need to do is break something!
  4. Thanks...that's why I only want to take if absolutely necessary.
  5. Done! I always worry about taking new meds. LOL
  6. I was being careful today with snow boots and such, but fell down unsalted icy stairs...I am in pain, but nothing is broken, fortunately. Just going to hurt a bit. Landed mostly on the tailbone area as I didn't want to put all the weight of the fall on my arm. My POTS seems to be flaring (I wasn't feeling great before this occurred, maybe fighting a virus)...but could something so unrelated flare-up POTS a bit? Or is it probably coincidental? My doctor prescribed a muscle relaxer if I am in a lot of pain for sleeping, too - has anyone used this with POTS? Thanks for any help!
  7. I understand they are unpublished, but do you recall any of the medications that were discussed?
  8. I am still waiting on the 'standardized' form - I hear it's due Mid-January...I have a chronic disease so I'm not really concerned about an issue...it's just coordinating with the doctor to get filled out appropriately, etc. I didn't even know an FMLA bill update had passed! I'll let you know info about the form once I receive it.
  9. Thank you all so much! I am going to start it after the holiday...I have my prescription filled. I'm glad to hear that the two children with asthma have no problem with it, either (that was my 'big' concern)...so sad to hear your two babies have this, though. Hoping they will outgrow it as they reach adulthood! Thank you so much again.
  10. I try to plan as much FMLA in advance as possible. This coming few months I have a chunk of appointments/tests and am preparing for my visit to Doctor G. HR accepted my doctor letter & time off, but said due to new federal regulations for 2009, will require additional documentation from my doctor. They said a fax should suffice as his appointments book quickly because he also does a lot of procedures every week. I was searching online trying to find changes for Intermittent FMLA (which I am on) and these are the main changes I found: Definition of ?serious health condition? ? To qualify for FMLA, an employee or family member must be incapacitated for more than three consecutive days and make at least two visits to a healthcare provider (or one visit plus continuing treatment). The proposed regs require those two visits to occur within 30 days of when the period of incapacity starts. Also, to get leave for a chronic condition, the employee or family member must make at least two doctor visits annually. If an employee's "serious health condition" is based on "periodic visits to a healthcare provider" for a chronic serious health condition, the employee must make at least two visits to a healthcare provider per year. 29 C.F.R. ? 825.115©. Intermittent Leave. Employees taking intermittent FMLA leave for planned medical treatment must make a "reasonable effort" (as opposed to the previous "attempt") to schedule their leave so that it does not unduly disrupt an employer's operations. 29 C.F.R. ? 825.203. It looks like it's primarily that you have to make 2 visits a year to a healthcare provider? I do that in a month, usually! I also schedule as many appointments in advance as possible to give adequate time off requests. Does anyone know of any other changes that will affect us? Has anyone seen the new 'form' that's supposed to be filled out by the doctor (I guess it's a more uniform process this way). Thanks!
  11. I have my prescription for the .25 (very low dose, doctor said)...I'm supposed to try one to see how it reacts with the POTS. If I have a super-stressful situation the low dose may be less of a problem (with symptoms) then just letting them run their course, so it's trial and error. Do any of you know the different dosages of Xanax? Will .25 be helpful for someone who's never used it? Also, there is an 'interaction' with oral contraceptives (can make Xanax more 'pronounced' so a lower dose should be used). Anyone noticed this? Thanks!
  12. Hello! I'm still hesitant to try Mestinon...I had my asthma test (just mild asthma that is well under control). Their line of thought is...if my asthma is under control, why take a drug that may make it flare-up/worsen since I have so much to deal with already. My doctor thinks it's worth a try - I can stop after a day, even, if I have issues. I've read through older threads and it seems to work for a few people, but other people had no reaction/bad reaction. The last thing I need is a horrid flare-up right before the holidays I have to get through (I have some extenuating family stuff to deal with, don't wel all)...be it with POTS, Asthma, or GI. My POTS has been bad enough, anything else would be miserable right now. Is it fair to wait until after the holidays if I do want to 'give it a go?' Also, I read about this online. Has anyone heard of it? I kinda need my Nasacort for the worst allergy seasons. "PYRIDOSTIGMINE BROMIDE (in Mestinon Tablets) may interact with TRIAMCINOLONE (in Nasacort AQ) This drug can decrease the efficacy of pyridostigmine in people with myasthenia gravis. This can make muscles weak. Some people may need help to breathe. Life support systems should be nearby if these drugs are used together.Ask your healthcare provider about these drugs and this potential interaction as soon as possible. This interaction is well-documented and is considered major in severity."
  13. I'm very bad at this. My doctor even tells me to try not to overdo it so much...he agrees I'm likely not really 'harming' my body horribly or anything, but I feel AWFUL, tachy (high heart rate), etc. with a bad spell. When I feel well (well for me which isn't fantastic!), I just want to get stuff done. So it is hard to know when you're 'overdoing it.' Sometimes I overdo it and recover quickly, others times I pay. This condition is so up and down it's hard to gauge, so I feel.
  14. Thanks so much everyone! I am a bit better, not 100% to my 'normal' POTS symptoms, but better at least. I think I always worry I'm getting 'worse' and will not get better...I know I should stop this, but it's hard. It's so unpredictable. But now I'll remember it's likely an allergic reaction and/or virus or something similar and stay calm for a few days to see if it improves. Virus/Colds are just no good with POTS.
  15. Welcome! When I first came I read through a lot of posts, which was beneficial. My doctor even recommended this! Also, when I have something 'weird' happen, I know I can post here and people will try to help out. It's scary (I was just diagnosed last January) so this year has been traumatic.
  16. I was wondering if I was fighting a virus...even a mild one (I forgot about this from last winter...I guess I just blocked the awfulness from my mind). Even if the virus doesn't fully manifest, I think you can get worse symptoms while your body is fighting it off. I have had a headache/been a bit more stuffy than usual. Am a tad better today, not great, but at least not worse. Thanks for your help and I'll have to remember the virus thing before getting all scared I'm going down the toilet for good!
  17. That's so true! It's hard to figure these out. Yes, I have taken benadryl before with only a mild symptom increase, and I was told that was probably from the actual allergic reaction...so it's hard to figure out. Usually I can 'ignore' a moderate flare-up, this is just worse than usual. Isn't it unfair we have to learn to just live with this, mostly? I hope we all wake up healed one day!
  18. So if it is the Benadryl, it could last 2+ days? I was hoping if it was that, it'd be ok after a day or so. But I guess it's not that easy.
  19. The only 'big' changes to my routine (and they aren't really big) is a twice-daily hydrocortisone cream on my face since Thursday for a rash from a reaction to a face product (and I'm highly doubting this could be causing my worsening symptoms). I had to take a Benadryl Friday afternoon for additional hives...I take Allegra daily with no issue, and Benadryl only for an emergency/severe hive outbreak. I've been way more fatigued since Friday evening, my HR that usually hits 100-125 on standing/moving around is flying up to 140-160 EASILY with minor activities. It takes longer to go down (usually stays in 90s unless I lie down this weekend) and that's not 'normal' for me. So I can't figure out what all of a sudden is making me dizzy, fatigued and having a very fast HR. I wear my Heart Monitor daily so I'm used to what's typical. And 150 putting up some towels isn't normal. That's usually after going up flights of stairs! Any advice? I get bad reactions for a day or two after Ambien, but 1 Benadryl is only a 'half-dose' (you can take 1-2 over the age of 12) and I wouldn't think that would cause such an extreme reaction for two days! I have to go to work tomorrow - it's an important meeting, etc. day. I'm seeing my EP Tuesday but don't know if he'll be able to figure this out. I'm getting really down about all this. Things were tolerable again now I'm exhausted from putting up groceries.
  20. Mac's Mom - I take Allegra right now and a Benadryl for Hives/Emergencies (allergic to nuts) but then I'm horribly Potsy for two days after the darn Benadryl now. It never used to bother me, either. I have been wondering about the Mast Cell stuff because I've always had bad allergies, random hives, the other day a new blush caused a severe rash on my face (within a minute of putting it on) and have to use prescription hydrocortisone cream for two weeks. Reading some web sites, the best method to test for this is a bone marrow test. That scares me. I already have a bunch of tests to do before Dr. Grubb (sleep study, food allergy tests, etc) and this would be another big one and, well, scary. How did you get diagnosed? It's interesting this could all be related to the swallowing issues too!
  21. That's what Ambien did, more POTSY and the worse was tachycardia. I guess I could try one and see...if it's worse than Ambien no point. I'll run through all this with my doc. I seem to be so sensitive to meds!
  22. Thank you - it's great to have someone understand where I am coming from. Not looking for a 'good time' - I need help to get through this (and sleep!).
  23. Sometimes I have difficulty swallowing and wonder if it is a POTS thing. I tell myself it's not as bad as I'm 'feeling' - like when I'm drinking something and can't swallow, it's just liquid, it has to go down. But that doesn't always help a lot! I was searching because today I'm having this issue again...it's on and off. My throat can feel a bit tight, have to work to swallow, etc. It comes and goes and is frustrating. Anyone found out anything about this since the last post?
  24. I cannot offer much advice, but I feel for you. I have a nut allergy, and I know how awful allergic reactions can be (and that sometimes they are hard to get taken seriously in the outside world). That you can eat virtually nothing is frustrating...I hope they find out what's wrong. If you are having this much of a reaction, I've always been told it's because of histamines ' on attack.' I wonder if yours is more Mast related then? It's a hard decision to make. Let us know how things go!
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