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Everything posted by iheartcats

  1. Hello, I'm going to have a 'stressful' family event coming up for the holidays I have no control over. I used to take Ambien on occasion so I could still get some rest during 'stressful' times, but that's not working for me (makes my POTS go crazy for the next day or two - up to 160 BMP, even) so I've stopped that. I do not have an addictive personality, either, and no history of substance abuse. I'd like to have a small Xanax prescription for anxiety/sleep for a week (maybe 5 to 10 pills, not sure how the dosage works). I've read about the medicine online, and it says you have to go off of Xanax 'slowly' so you don't have withdrawal symptoms. What does this mean? Can it be used for short-term problem or will I still need to 'wean' off of it? How should I approach my doctor about this? I can't have insomnia for 3 or 4 days, as I'll be too sick to work. My situation is very specific and stressful, which I can explain (PM me if you need additional info, I'd rather not go in details at this time). If not Xanax, what else? I don't have to have to use Advil PM as it makes me groggy, but if there is no other option for me, I have no choice. Thanks for any advice! OOPS I spelled FOR wrong in Title!
  2. I've heard so much good/bad about Depo. But stopping the menstrual cycle sounds wonderful. My OB/GYN also recommended Mirena for me...it's a bit $$$ up front but lasts five years. I heard it really, really hurts getting inserted and you are sore for a few days after. She seemed to agree that yes, being inserted is rather painful. But right now even 4 cycles a year are getting me down. I pretty much have to plan a couple days off work during 'those times' which is annoying. Like there isn't enough other POTS stuff to deal with! These decisions are always hard to make...and with our outstanding condition(s) it's even worse. If a healthier person had issues for 6 months from Depo, it may be more tolerable than someone with Dysautonomia/POTS having 6 months of an additional problem caused by a medication.
  3. I guess the additional fatigue and tachy-ness & menstrual cycles is just a fact of life with POTS...it is just so bizarre what this condition does to us. I'd like to know medically how POTS is so affected by menstruation/PMS. For those on Depo - how much weight gain did you have, if any? I did way too much searching the Web on this and some gained weight, some didn't. Is it one of those up to the individual things? I tend to be somewhat sensitive to medicines & stuff, but haven't read many reactions to Depo that are any different than I've had from BC Pills that just didn't agree with me, so that's a plus. I suppose you give it a try for 3-6 months and see if things regulate. A plus, I read since it's non-estrogen based you don't have to worry about blood clots/DVT. That'd be a relief for me as I get migraines. I'll talk to my OB and Cardio about Depo and post back here w/ anything important I find out. Hopefully they are willing to let me give it a try. Having periods every month is not an option, though. It would highly interfere with me being able to work and function.
  4. Thanks so much, girls. I will do some searches and discuss other options with my doctor. Looks like I may have to stop it, too.
  5. I am now on Seasonique for about a year now (period 4 times/year) because I was having horrid PMS, pain, and migraines. The Seasonique is lessening all of this...I still have PMS, pain, and headaches but they are no longer almost disabling. I was diagnosed with POTS last January and have only had a couple periods since then. I know my last one made me a bit more symptomatic (wish I would've paid more attention), but this one seems to be really harsh on my symptoms. I'm having more fatigue and faster heart rate on standing. Obviously, the fatigue could be in part the period, but I know most of you guys know what I mean by more POTSY and I am. And my heart rate is just higher standing/walking around/etc to the point where that's really exhausting (130s/140s compared to 100-115 on a more 'normal' day). BP is normal for me, fluctuating, but nothing out of the ordinary. Do any of you see changes around and during your period with your POTS symptoms? I guess this is something I have to bring up with my doctor next month...any suggestions on what I can do to help symptoms? I'm drinking, drinking, drinking and eating salty foods as much as I can.
  6. I didn't realize how much Apnea could affect the ANS. I've made an appointment to discuss this with my PCP...may need pre-approval for insurance but I'd like to know because anything that would make my POTS more tolerable/livable is worth it. Thanks for all your help!
  7. I will have to discuss the sleep study with my doctor next visit. I didn't consider Apnea (when I Google'd it, it said most sufferers snore...may I kindly ask if you snore)? I ask my spouse, he says I don't, but with POTS and other issues people have on the board, I wouldn't be surprise if we could be the abnormal Apnea patients! I didn't think about the Ambien worsening something else, thus causing worse symptoms. I've had to take Benadryl for hives, and I don't recall that making me worse (if it's a CNS depressant, too)... How often do you take Klonpin? Just at night? I've heard Xanax can help 'anxiety sleepers' but again, that probably messes with the CNS too. At this point, I can't fully tie Ambien to 'worse symptoms' - but I'd like to know because I do need sleep. So will have to discuss all this with the Doctor. In the meantime, I'm not sure what I'm going to do over the holidays when I can't sleep well ... I might test a mild Advil PM since I've taken Benadryl with success in the past to get through the hump. I am fairly certain I won't be able to get in for a sleep study before January because of my schedule and it's usually a few weeks wait from what I hear. Thanks much everyone! I hate when a 'good' medicine stops working!
  8. I tried to do the Ambien 'test' (take it and see if my symptoms worsened the next day), but the next day I was hit with 'outside' stress so I'm not sure if the Ambien or the stress caused worsening conditions (fatigue + greatly increased HR). I've done a lot of searching online...I can't find anything that really discusses Ambien + next day tachycardia. Anything I've even seen says it causes it when taking it. Not the next day. Is there anything in Ambien that could cause my POTS (specifically my heart rate to increase from the average of 80-95 sitting/95-125 standing to 85-105 sitting and 120-155 standing the next day)? The last two times I've taken it, I had a 30bpm increase on average the next day which led to fatigue, mental fog, etc. I think I may try a half dose and really try to pay attention (or try it when I'm in a good spell) to see if it's really the Ambien. I need sleep (and I work and it's hard to function without enough sleep)...and I've used Ambien occasionally for years. Now I'm wondering if it doesn't work, what else can I try? Any suggestions? I've seen Advil PM at the store...is that similar to Benadryl without the antihistamine? I can't go 2 or 3 days with little or no sleep (if I have a bad spell) and work and function. I am at my wits end if my Ambien is now worsening my POTS. I'm afraid any other CNS-depressant medicine will have the same affect. Edit: I see a lot about Klonopin...I think I need to bring this up with my doctor, but I'm worried they'll think I'm imagining the Ambien issue!
  9. Cool. I didn't know about the 'wrist splash with cold water' and 'marching in place.' I tried the marching earlier while standing and went from 135-125 so that was nice! It's been a particularly bad week, so I'm thankful for all these tips.
  10. You know, since the stress is outside of my control - I think I need to learn to 'manage it.' Sitting around and worrying and waking up in the middle of the night panicky isn't going to solve anything, except make me more ill! I'm trying to accept there isn't much I can do except get through this period of time...I am feeling a bit better. But I do think it was stress making my symptoms crazy the last couple of days. Unfortunate, but at least I found the 'major trigger' for this downturn. Right now I'm trying to focus on day-by-day and telling myself things have to get better. I need to look into the advice on stress management, though, because I'm not able to handle it nearly as well as before I had POTS. And I didn't realize how bad it can affect me. You sure learn something with this illness everyday, don't you?
  11. I think it's very hard, and very scary. I know what you're saying about being forced to quit work. I can honestly say I don't know what I'd do if it came to that. I really don't, and just try to go day to day and not think about it. After reading this I think this is why my 'bad downturns' scare me so much - is it a short-term thing? Are things getting worse when they were getting better? It's because I really need to work and I'm doing the best I can to keep going. It has meant giving up a lot (activities, leisure time, have to break up my cleaning into 'tolerable' chunks and even hope I can get that done, going out with friends, etc). Work takes most of my energy. And as you all know, because many of you who can no longer work, probably went through the stage where it takes a lot to keep working and you lose friendships, family doesn't understand, etc. I just try to accept sometimes life at least gives you a choice. And I've had to take the choice to work but give up other areas. I try to remind myself while I'm not feeling great and it's not optimal, at least I'm able to work mostly full-time. I couldn't have a high-pressure job, I couldn't have a job more than 40 hours a week, so that limits opportunities and promotions. It sounds like all of you understand that - I hoped to do more in my career, but I just can't right now. I have to be fortunate for what I have. FMLA helps when you are borderline...able to work but not able to do lots of other things...I have it as a cushion for when I need to take a day off, go to doctors, etc. And before FMLA, I've had to use all my vacation for health reasons. That's hard. And even more so when co-workers think you are out having 'fun' and taking extra time...and we're so not! After reading these posts I'm going to try to be more positive and thankful I can get to work most days. You can't take things for granted and I've been focusing too much on the things I can no longer do.....but if work has to be my choice of what I can do, I should be thankful I even have the choice right now.
  12. I'm dealing with much more than normal stress this week. I usually, of course, have stress of various sources like everyone. But this week I'm dealing with 'more than usual' ... by quite a bit. My symptoms are much, much worse. Gastro (which I usually don't have). Rates 150s standing (usually 100-125)...Rates 100 sitting (usually 80s to low 90s). I know in my 'head' this isn't going to kill me. But of course it's adding to my anxiety. Two days of HRs averaging around 100/110 is tiring if nothing else. And wondering 'when will it get back to my baseline.' Well, I read this on the site: Stress will often aggravate the symptoms of POTS. The body is continuously adapting to stress, whether it is physical, mental or chemical. POTS patients sometimes lack the ability to correctly process stress due to malfunctioning or excessive functioning of the autonomic nervous system (ANS). Patients may also already have high levels of norepinephrine, which is a stress hormone. POTS patients need to avoid stress (when possible) and live life at their own pace. Does anyone else have this happen? I guess I've never looked into this, but didn't really POTS patients may not process stress correctly. It falls in line with the stress I've been experiencing...(plus the cold weather change which I'm sure has a bit of an influence until I adjust). Any tips on how to get stress that's out of my hands under control? It is much harder for me to deal with when there is really nothing I can do personally...
  13. Thanks for the group venting. I totally understand what you are saying and the smirks and eye rolls. I've noticed some folk have just quit checking in to see if I want to do anything. On the one hand it's a relief not to have to turn them down, on the other it's said I've been given up on...! I wish I could! do everything. I have to work, not a real choice at this juncture, so much of my energy goes to that. I try to save a little energy for things I enjoy (bits of holiday shopping, occasional movie, bookstore)...and a little for minor housework as I can as some things just have to get done. Of course this pretty much drains me PLUS so there's not real room for adventures and dancing. I've vented about the coworkers not understanding, but it's just like icing on the cake. I'd rather not have to take any unpaid time, I need a paycheck too and going to doctor appointments and tests isn't my idea of a fun day out. Alas. I'm glad I found this place. At least we aren't alone.
  14. I got mine last month - only a sore arm, a tad more tired the next day. If it can keep us POTS people from getting the flu (which is miserable beyond misery).....then I'll take the couple days of discomfort. Let's hope they caught the right strains this year!
  15. I'm so glad it's productive! Please keep us up to date!
  16. I wish I could figure it out - I'm sure we'd all be pleased! Well, this week has been especially stressful (today which is unfortunate because I started off horrid and then had many outside-of-my-control stress factors pile-up). So I'm a mess tonight and I need to get things under control. My HR has been way too high today and I'm worn out. I usually do not get many gastro issues, but things are so bad I'm having those! Under normal circumstances, a person would be stressed and feel unease, maybe stomach/gastro issues, etc. But with POTS? It just makes it unbearable. I'm doing what I can. I am telling myself I can get through this, but boy, that's hard sometimes. If this was under my control, it'd be easier. But when something is completely out of your hands, there's only so much you can do. And POTS is making it worse. I'm at the point where I'm wondering if depression can have an affect on POTS? I have a hard time admitting it, but the combination of POTS and other factors are really getting to me. Without POTS I could deal...with POTS..., well, things are hard enough. I don't know if this is just a low point or if I am depressed. Sorry to get off track, I'm just trying to really figure out why I've taken such a turn for the worse. And I am finally starting to admit to myself I may be depressed (on top of life stress, work stress, dealing with a chronic illness, etc). Thanks for all your support.
  17. Willows - Can I ask you something, if you don't mind? Since you've had POTS for so long, do you think you have the hereditary (non-virus/other cause version? Also - before you knew you had POTS (before it was a 'real disease' that doctors could diagnose) how did you function? Have you been able to live a somewhat normal life? Family? Working? Etc? I'm asking these because I was diagnosed almost a year ago and I'm going crazy dealing with it. I have no choice but to work right now and it's hard. Sometimes that takes most of my energy and other things slack (friends, family, cleaning, hobbies, etc). It's hard. Since you are a long-time sufferer of this horrid disease, do you have any advice for us who are just starting out? I don't know why they keep testing you in the UK. You'd think with socialized medicine they'd want to do as few tests as possible. They obviously know what you have. It's well documented now! That's frustrating. Thanks much for any advice/help. I'm so sorry you've had to suffer for so many years, and the many, many years no one knew what was wrong with you.
  18. Hello, I seem to be having more up and down days. Mornings are usually the worst, not always, but usually. Yesterday I was feeling 'ok' and had a heart rate that varied from 85-120 depending what I was doing. With POTS, this is fine for me. At this point that's a great rate and I'll take it. I wish it could be better, but at least I'm 90% functional. Today it's been varying 105 - 150 depending what I'm doing. This is just a day later. I've taken my same meds, drank a lot of water, forcing food, etc. Having a 'sitting' HR of 100-110 gets tiring at work and getting around at 135-145 isn't pleasant. I'm much more tired & fatigued today due to this. I can't believe it can vary so much one day to the next when I've not changed my routine! Lately I seem to go for a day or two being 'okish' and then a day or two being very 'Potsy.' I know on my OK days I can hit 150-160 going up stairs, etc. but that's expected. It's over pretty quickly. But days like today where I'm resting around 100 and around 135 walking are frustrating. I see my doctor next month, but last time we talked he said that's really 'just POTS' - we try increases with Midodrine and see if that helps. I'm at 7.5 in AM now and it seems to help some days more than others. He expects to see some fluctuations, but they just seem to have become more erratic lately. And of course it's coming up to the holidays which I'm sure is taxing on a lot of us already. So great timing for my days to start being so variable. Any advice? Anyone keep a log? I'm thinking I might do that in the couple weeks before my appointment. I'm just so frustrated and tired and not working isn't an option right now so I need help keeping the 'worst' days under control. If it's above 150 for too long those are the days I just can't make it to work, but fortunately I've been avoiding those lately...but with things flaring up and down I'm concerned. Thanks for listening.
  19. I have a Polar brand, the cost was around $150. It works well (little to no interference with electronics), my doctor likes the accuracy of it, and the chest band isn't terribly uncomfortable. One gets used to it. I had to pay out of pocket, insurance won't cover it. You may be able to pay using Flex Spending Account (FSA) is it's medically recommended. I've seen plans like that.
  20. I'm dealing with my doctor wanting me to go on Mestinon now, but I have to have a baseline asthma test first since I have asthma. It can affect it, so we have to monitor it closely. He wants me to start at 180mg (time released) but I really want to start lower. He's very sure I can handle the 180mg, but I personally don't want to start that high. Do you mind sharing what your doctor did to gradually work your way up and do you take the 180mg time released now? Thanks!
  21. I find Gatorade or Sport Drinks help more than water because of the electrolytes and salt. Also, while sometimes I understand you can't help but lie down, try to move around a bit so you don't get too deconditioned if you can stand it. And eating is essential. I know how hard it is to eat if you don't feel like it, but you need food. When I skip meals I notice I get very, very dizzy.
  22. Oh that's so difficult. I never thought about this in detail, but now I realize I try not to cry because I can end up feeling 'crappier' - but I think for me it's more the stress of the situation and allergies. I know you can't make yourself not cry so it's really hard. Deep breaths, divert your attention to something, rationalize the situation, whatever helps you not to cry. I'm sure you've been in situations where you want to cry but can't, so those techniques may help. Hang in there!
  23. Old post...but I have a question. I am still not trying to take Ambien very much. A few times a month when I need it (doctor says more important to get sleep when I need it and haven't been sleeping well than worry about a few Ambien a month). Well. I can't tell if I'm more symptomatic in the AM after taking Ambien because of the Ambien or because I take it at the times when I'm exhausted and haven't been resting well, stressful times at work/family, etc. It's one of those chicken/egg situations! I guess to get rest dealing with a higher HR/dizziness for a couple hours isn't the worst thing to complain about. It's just really hard to figure out how a medication works with POTS sometimes.
  24. I just read through all these posts and I really want to thank you all for *really* taking the time to listen to me. I have no where else to turn sometimes...and it's wonderful there are people out there who care. My normal 'bad spike' (low on fluids, going up stairs carrying something, walking in high heat/humidity on a bad flare-up day, flu/viral infection) is usually around 180. I am used to that enough, and it's not for an extended period of time. It's no fun, but I deal. So today with the 200 I felt more dizzy than usual and you are right in that, yes, before my monitor there may have been times it flew up to 200 for a couple of minutes. I think just 'seeing' the 200 was a shocker. By squatting for a minute and getting back to 120 within a minute or so I was fairly certain it was POTS. No real 'chest pain' or other symptoms. I knew the beat was fairly steady, too. Obviously if it kept flying up and up I'd have called 911 if none of my usual 'tricks' worked. I'll only have had POTS diagnosed since last January. It got 'worse' probably about a year ago, when I really took notice something was off. Just going through all the seasons/weather changes/etc. has been an experience in and of itself. There are days when I sit and it's in the 70s/80s and other days 90s to 110. There are days when I stand and it's 95-110 and other days 105-125. So on a 'flare-up' going to 185 isn't a shocker. My doctor knows that's about my 'high' and he's told me to sit down, lie down, whatever I need to do. I haven't tried the cold water, that may be a good thing while at work, so thank you. Years ago I had an SVT (not PSVT, they confirmed). My rate got 'stuck' at 260. I had to call 911. I was otherwise healthy enough, no POTS, and that was a very different feeling than today. They had to give me Adenisone (sp?) to stop it and then I had an ablation. I developed POTS (they think) about two years after that after catching a virus. I'm still seeing my EP who did my ablation and he is 99% sure there is no connection to my ablation and POTS as they were so far apart and I remember wearing a doctor-reviewed heart monitor before my ablation and someone would've noticed POTS-Like symptoms. So. It's weird I've had both...but today was much more "POTS" feeling than "SVT." Is it weird any kind of anxiety can up my HR about 40-50 BPM? I've noticed any time I get extremely nervous/anxious/stressed it makes things go almost out of control. I need to learn to control that (at least somewhat) so any tips are helpful. Now I just try to sit or lie down and think this will pass, it's ok, this will pass. Thank you again for all your help and kind words. It means a lot.
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