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01-07-2018 05:08 PM
This post has been removed by QVC because it is inappropriate.
01-07-2018 05:33 PM
@mistriTsquirrel wrote:Thank you, @WaJa61, @Reever, and @fortune for your kind posts!!
I've been feeling pretty bad lately. I definitely don't have the same "can do" attitude I had on the 50 mg. of Pristiq. I am very anxious now, and not feeling very hopeful. My body feels like it's gearing up to have a period though, so hopefully that will happen. I tend to get pretty bad PMS/PMDD, so I'm hoping I will start and then feel better.
Changing doses has really shown me how much my brain relies on medication to function well. I was feeling like I could conquer whatever came my way when I was on a dose of medication that worked for me, and now I am back to having these negative thoughts going around and around in my head. I realize now how much my brain chemistry has kept me focused on things that aren't useful, but I can't help it. It's harder to think good, happy, positive thoughts when you don't have the ability to derail all of the negative ones.
I keep telling myself that just because I'm not doing well now, it doesn't mean I'll always be doing this poorly. But it's hard to live this way. I'm just trying to distract myself at this point. I'm not sure what else to do.
I hope you are all doing well. I'm just trying to keep busy.
I am so sorry that you are feeling so awful! I've been reading a lot about depression and have found that it is extremely complicated. Another thing that is evident in my reading is that there is yet so much to learn about causes and cures. Here is a pretty inclusive site:
https://www.health.harvard.edu/mind-and-mood/what-causes-depression.
One thing that everyone seems to agree on is that stress and a continued bodily state of "fight or flight" are culprits. Exercising outside in the sunlight can really help. Even if you can't solve all the factors involved, targeting some of them can cause beneficial results. And, this is something that you definitely have control of.
Sounds like you might need a new look at your current medication situation. One thing I learned is that when you start a new depression med, it usually takes weeks to work--fixing your neurotransmitters. Do you have access to other psychiatrists or perhaps a teaching hospital?
Glad you are staying busy! I am really getting ready to start throwing stuff out. I was sitting on the couch and looking around the room and deciding what needs to go--and that's just in my living room!
I didn't see Jasper this week because of the ice and bitter temperatures! I really miss him! He gets my endorphins going. and one kiss from him is worth a pile of money!!!!! Hopefully, we will be getting warmer weather next week!
NAP WITH A SPIDER!
01-09-2018 03:58 PM
@fortune Aww...Jasper.
I would definitely say my anxiety has eclipsed my depression.
As far as the meds go, yes, it does take weeks to see a change in your depression when you start meds, change meds or change doses. But I've noticed it's not quite the same with anxiety. SNRI's seem to act on that more quickly, and I think the decrease in dose that started last month is affecting my anxiety level. And it's not unusual for me to become severely depressed and agitated before my period, so I'm sure that doesn't help. The fact that I realized there is no straightforward fix for my POTS has been hard on me as well. I was so hopeful I could just make some lifestyle changes and take a medication and things would get better, but it's not that simple.
I started to take my blood pressure and heart rate, and I may start at 101 over 72 (not usually that high, but that was today), and a heart rate of 90. Then a half hour after taking the Pristiq, my readings are now 86 over 68 and heart rate of 95. I'm guessing the heart rate would be higher without the half Klonopin I took. I felt pretty okay physically before I took the Pristiq today, and now I feel light-headed. But even if I was able to get insurance to cover Fetzima (another SNRI antidepressant, no generic available), it lists the same possible side effects that are aggravating my POTS with the Pristiq. My options--in terms of medication--are not exactly limitless. When I list the meds I've already tried, the doctor I'm talking to always looks way less enthusiastic about my options when I'm finished.
I know the article you posted a link to states that depression is not just chemical, in that neurons take weeks to grow...but they apparently need the assistance of medication for that to take place in some people. So I wouldn't say it's a moot point, but it almost is for me. I can't seem to do any of the things that bring about positive changes when I'm unmedicated, because I can't concentrate, remember, make decisions, feel hopeful, motivate myself, etc.
Anyway, I'm trying to sort out what to do, but my anxiety flares whenever I think about the fact that I am not done seeing doctors and having tests. If I could've stayed on the 50 mg Pristiq, it would've been much easier on me anxiety-wise.
All I can do at the moment is try the sort of things you are talking about. The POTS makes it hard to exercise, but I am going to try to do something. My mother has a stationery bike that sits low to the floor that she will let me have. Not sure how I'm going to get it here, but I can have it if I can get it here. And just doing chores is kind of a workout for me at this point.
I was watching a Ted Talk today that made me feel a little more hopeful about trying different things to feel better mentally. The speaker wrote a book I'm interested in, so I'm going to check that out.
As far as other psychiatrists...it was very difficult to find the one I have, and he will take my insurance. Many around here are very selective about what insurance they take, or they only take payment up front. I was pretty surprised to learn that during my search, but that's the state of things around here. There is a teaching hospital nearby; I just looked, and they do have a mental health clinic. Not yet sure if they take my insurance.
Anyway, I really hope I will get my period soon. I feel better afterwards, and when it is light or doesn't come the PMS/PMDD symptoms seem to drag on. Last month I was late...and it started the day after the tilt table test, and was heavier than usual. It's as if my body was breathing a sigh of relief after that test was over with. After what happened last month, I'm pretty sure my stress levels are what's causing my period to be irregular and light. So I'm not too worried about the changes in my period...I just want to get it over with and not feel as bad.
Overall, I'm still trying to get things sorted out. Part of the reason I've been extra anxious and down is that I kind of thought that the tilt table test was going to be my last big challenge for awhile, and once I got through that I thought I was going to feel better and move forward with my life. But things have turned out to be more complicated than that. So I'll just do the best I can.
LoL about looking around your living room to see what's going. My living room is a complete mess right now...but my bedroom looks much nicer and is cleaner. So that's good. I've been going through a lot of things and making decisions. When I was on the Cymbalta and it had gradually stopped working, I found it extremely hard to make decisions. It's still kind of difficult, but not nearly as hard as it was. So it's a good time to declutter.
When I want to work on things but don't feel motivated, I watch episodes of Hoarders on YouTube. Every time I see the inside of one of those houses I get the urge to clean things and get rid of stuff. So if you're ever feeling unmotivated on a day you were planning to get stuff like that done, try watching one of those videos.
Sorry you couldn't see Jasper. I can imagine it's a real mood-booster to have him around. I like to watch animal videos on YouTube sometimes, just so I can laugh at the funny things they do, even if I can't get a dog right now. Maybe someday. I think Milo would prefer to have a girlfriend, but I'm not ready to be a grandmother. LoL
01-09-2018 06:01 PM
@mistriTsquirrel wrote:@fortune Aww...Jasper.
I would definitely say my anxiety has eclipsed my depression.
As far as the meds go, yes, it does take weeks to see a change in your depression when you start meds, change meds or change doses. But I've noticed it's not quite the same with anxiety. SNRI's seem to act on that more quickly, and I think the decrease in dose that started last month is affecting my anxiety level. And it's not unusual for me to become severely depressed and agitated before my period, so I'm sure that doesn't help. The fact that I realized there is no straightforward fix for my POTS has been hard on me as well. I was so hopeful I could just make some lifestyle changes and take a medication and things would get better, but it's not that simple.
I started to take my blood pressure and heart rate, and I may start at 101 over 72 (not usually that high, but that was today), and a heart rate of 90. Then a half hour after taking the Pristiq, my readings are now 86 over 68 and heart rate of 95. I'm guessing the heart rate would be higher without the half Klonopin I took. I felt pretty okay physically before I took the Pristiq today, and now I feel light-headed. But even if I was able to get insurance to cover Fetzima (another SNRI antidepressant, no generic available), it lists the same possible side effects that are aggravating my POTS with the Pristiq. My options--in terms of medication--are not exactly limitless. When I list the meds I've already tried, the doctor I'm talking to always looks way less enthusiastic about my options when I'm finished.
I know the article you posted a link to states that depression is not just chemical, in that neurons take weeks to grow...but they apparently need the assistance of medication for that to take place in some people. So I wouldn't say it's a moot point, but it almost is for me. I can't seem to do any of the things that bring about positive changes when I'm unmedicated, because I can't concentrate, remember, make decisions, feel hopeful, motivate myself, etc.
Anyway, I'm trying to sort out what to do, but my anxiety flares whenever I think about the fact that I am not done seeing doctors and having tests. If I could've stayed on the 50 mg Pristiq, it would've been much easier on me anxiety-wise.
All I can do at the moment is try the sort of things you are talking about. The POTS makes it hard to exercise, but I am going to try to do something. My mother has a stationery bike that sits low to the floor that she will let me have. Not sure how I'm going to get it here, but I can have it if I can get it here. And just doing chores is kind of a workout for me at this point.
I was watching a Ted Talk today that made me feel a little more hopeful about trying different things to feel better mentally. The speaker wrote a book I'm interested in, so I'm going to check that out.
As far as other psychiatrists...it was very difficult to find the one I have, and he will take my insurance. Many around here are very selective about what insurance they take, or they only take payment up front. I was pretty surprised to learn that during my search, but that's the state of things around here. There is a teaching hospital nearby; I just looked, and they do have a mental health clinic. Not yet sure if they take my insurance.
Anyway, I really hope I will get my period soon. I feel better afterwards, and when it is light or doesn't come the PMS/PMDD symptoms seem to drag on. Last month I was late...and it started the day after the tilt table test, and was heavier than usual. It's as if my body was breathing a sigh of relief after that test was over with. After what happened last month, I'm pretty sure my stress levels are what's causing my period to be irregular and light. So I'm not too worried about the changes in my period...I just want to get it over with and not feel as bad.
Overall, I'm still trying to get things sorted out. Part of the reason I've been extra anxious and down is that I kind of thought that the tilt table test was going to be my last big challenge for awhile, and once I got through that I thought I was going to feel better and move forward with my life. But things have turned out to be more complicated than that. So I'll just do the best I can.
LoL about looking around your living room to see what's going. My living room is a complete mess right now...but my bedroom looks much nicer and is cleaner. So that's good. I've been going through a lot of things and making decisions. When I was on the Cymbalta and it had gradually stopped working, I found it extremely hard to make decisions. It's still kind of difficult, but not nearly as hard as it was. So it's a good time to declutter.
When I want to work on things but don't feel motivated, I watch episodes of Hoarders on YouTube. Every time I see the inside of one of those houses I get the urge to clean things and get rid of stuff. So if you're ever feeling unmotivated on a day you were planning to get stuff like that done, try watching one of those videos.
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Sorry you couldn't see Jasper.
I can imagine it's a real mood-booster to have him around. I like to watch animal videos on YouTube sometimes, just so I can laugh at the funny things they do, even if I can't get a dog right now. Maybe someday. I think Milo would prefer to have a girlfriend, but I'm not ready to be a grandmother. LoL
I wonder if you made a list of the things that help anxiety and depression--looking at all the info--and started trying these, you could stop the cycle of which comes first. If you could ride the stationery bike (at your Mom's house), walk in the light, find things that lift your endorphins (laughing, playing with pets) even though you have to do these things without motivation. It's the old chicken and egg conundrum! Then, you might find that you feel slightly better and could DECIDE to do more or repeat these or other options.
Also, If you make two lists--one of your physical symptoms and one with your emotional symptoms--it could give you a clearer picture. As I remember, you're taking Midodrine, Pristiq (25 mg.), and a 1/2 dosage of Klonopin. The Midodrine can cause dizziness as a side effect. Are you wearing your support stockings?
Try to not go down roads that cause anxiety, such as looking to the future. I know this is really hard, but try to identify some distractions you can use to make you think of something else every time you start to go there!
I'd call the teaching hospital and ask them what services they offer, the cost, and insurance questions. They may have support group offerings, as well.
We had a really bad ice storm and I didn't realize how bad it was. I went out to put the garbage out and stepped on pure ice! I came so close to falling down the steps! I've since salted my porch.
I sure wish you could find some way to get cable. I don't know what I'd do if I didn't have that to distract me. By the way, I do watch Hoaders when I want to get motivated to throw stuff out. Some of the hoarders' homes are just unimaginable!!!
Jasper asked about you, Milo, and Heidi and sends whiskery kisses to you all! He's coming over this Thursday.
01-10-2018 01:14 PM
Actually, I wouldn't say my motivation has declined severely overall. It's more often the case that the way I feel physically prevents me from doing much. I used to be able to go for walks when I was on Cymbalta, but I can't do that anymore, because it involves standing for a long time. I would consider trying it anyway, but if I have to lie down during a walk...? Do I just lie down in a neighbor's yard? I think they would call the police.
I had to go to the UPS store the other day, and even though I had my compression stockings on and didn't have to wait long, I was still starting to feel a little light-headed. I was really crossing my fingers that it wouldn't take long, and thankfully it didn't.
I don't usually go anywhere, because I never know how long I'm going to be there before I'm going to start feeling light-headed and want to lie down.
I haven't started the midodrine because I just got a blood pressure monitor. The information with the medication is pretty clear about checking your blood pressure regularly while on it, and I couldn't do that. Now that I got one, I've taken some readings that have convinced me to change what time of day I take the Pristiq...which was another thing I was confused about. What sort of schedule should I have for the meds I'm on? My cardiologist just told me to take the midodrine 3 times a day, every 4 hours, and not before bed. Which has been complicated by another problem: my difficulty maintaining a day schedule. I'm so naturally inclined to be up at night, but I need to be able to make calls and do things that can only be done during business hours. So I know I need to maintain a schedule that keeps me awake during daylight hours. I can get on a schedule like that, but when I feel awful physically and need to lie down, it messes with my schedule. Most people can have some coffee, but I have to limit stuff like that because it affects my POTS and the vestibular problems I have.
So anyway, I'm just trying to work all of this stuff out. Figuring out how to put on the compression stockings was a challenge. Getting a foot through the ankle of one of those things is a struggle, and I have a sensitive area on the tops of my feet that I never let anyone touch. Unfortunately, a tight, scrunched up band of compression material has to sit on that area while I reposition my hands, and man is that uncomfortable. I also have to keep my nails short from now on, because I bent 2 of them back the first time I tried to put on the compression stockings (ouch!). I am kind of uncertain about whether or not they help. I still get light-headed when I'm wearing them. I think the effects of the Pristiq may be too much for compression stockings to offset. So on to the midodrine.
I'm kind of nervous about taking it, because you can't lie down after you take it (it can cause supine hypertension if you do that). So...what do I do if I get dizzy when I take it? I usually lie down if I get really dizzy, and that helps. Will the Klonopin affect whether I get dizzy when I take it? When should I take the Klonopin (in relation to the midodrine)? I just...I have these questions, but I feel like I have to figure things out on my own, because I can't make an appointment with the prescribing cardiologist now, as my new insurance doesn't cover him. And to be quite frank, I'm not sure he would be much help. I would bet that he would ask me what time I get up, tell me to take it at that time, and the next dose 4 hours after that, and the next one another 4 hours later. That's how most people take it. But I've got these other medications and the vestibular issues. The reason I still think of the vestibular issues as not necessarily due to the POTS is that the PT I had last year helped. And it does help with the dizziness when I regularly do the PT exercises, but it aggravates my POTS to be lying down and sitting up repeatedly the way some of the exercises require. So I just try to remember to do the one that I can do sitting, which was the one that I think helped me the most anyway.
Sorry, I guess that was all just me dumping my brain out. Can you see why it's taking me time to work all of this out? I don't have one expert I can go to who will guide me, and I feel like that's what would be really beneficial.
There is one POTS/syncope expert in my area. I called this morning and I am now on the waiting list to see him. Could be 10 months. Or I could see his nurse practitioner sooner, but if I see her, they will take me off the waiting list to see him. Not sure what to do about that. I think the nurse practitioner may be able to help me, but it would be a gamble, because again, if I see her I get taken off the waiting list to see the doctor, who is so well-known as an expert on things like POTS that he has his own wikipedia page (and it's rather impressive, IMO). The fact that there is a guy like this in my area, that he is willing to take new patients and will take my insurance is like winning the lottery as far as I'm concerned. So I feel really thankful that I can even get on the waiting list to see him.
I think I can figure out some of the practical issues (like a medication schedule that works, assuming the midodrine will work for me) on my own. It will just take a lot more researching and "figuring out" for me than it would for someone who is an expert.
I do think I need to keep closer tabs on my symptoms, because keeping track of things can provide clarity. Just having this BP monitor really helped make it clear to me that my Pristiq should not be taken during the time of day when I need to be getting things done. I guess that should've been obvious to me, but I reasoned that I shouldn't be taking something that raises my heart rate in the evening. I figured that would be like drinking coffee in the evening...messes with your sleep. But seeing the numbers, I can see that I probably need to take it after my business is taken care of, but not too close to bedtime. I'm back on a day schedule now (after much effort). Hopefully I can maintain a regular day schedule (maybe??).
As far as calling the teaching hospital, I may do that. Or I may be seeing an endocrinologist, like my GYN suggested (I was too overwhelmed at the time to go climbing up that tree). Many of the physical symptoms I have are associated with autoimmune thyroid disease. It's something to consider, especially since thyroid problems are common on my mother's side of the family. And POTS can be caused by autoimmune disease. I've had yearly thyroid panels, but--from what I've read online--people are often told that their thyroid levels are normal and go on to find that they have Hashimoto's thyroiditis by someone who is knowledgeable about the condition. It would be nice if that was the underlying problem and it could be treated successfully. I don't know. ::shrug::
Anyway, there are a ton of things for me to look into, monitor, write down, consider, etc. It's kind of overwhelming.
I hope you will keep that porch salted!! We've had snow here, and it doesn't seem to be icy, but I haven't been out in it much. I guess I need to check and see if I need to break out the salt.
I don't know about getting cable. When I've stayed at my mother's house, I've found that I often wind up streaming stuff on my computer instead of watching t.v., because there isn't much on that I want to watch. I've thought about getting cable again, but what I really need is faster internet...but it's not my top priority. Since I'm able to get myself motivated (not every day, but whatever), I feel like I need to be doing as much as I can. I never know how I will feel next month or a year from now, so these periods of time are when I need to do as much as I can physically do.
I'm glad you'll be getting your Jasper fix this week!! He seems like such a doll!! I love seeing his handsome face when I come here.
I love how his paws are holding the sign. LoL And the shadow was a nice touch. And the fact that he is apparently 2' 1" tall, with ears.
01-10-2018 01:51 PM
@WaJa61 wrote:No worries, @mistriTsquirrel. You certainly have a lot going on that needs your attention right now. I can read your posts to others here in general and keep up with how you are. No need to reply to me individually. Just wanted you to know, I think of you often (even when I can't be here) and want the very best for you. I'm praying your doctors can help you and that everything works out so that you can get your meds at an affordable price. Should not be this way for any who are already suffering! 😢
As to jobs... only you know what the perfect fit would be, but I've always admired your writing talents. Perhaps you'd enjoy editing for an online publication. I would also recommend considering medical transcripting, but lordy... that can be so stressful. My DIL who suffers with lupus tried that for a couple of years. It was too much.
You are doing your very best and I continue to be so proud of your efforts. May 2018 find you in much better health and with more clarity for your future. ❤️
Hi, @WaJa61!! How are you? It's nice to see you again. I'm sorry I didn't reply sooner. I'm so overwhelmed at times that I can't get my stuff together.
I hope you are doing well, and that the new year is starting off great for ya!! Thank you for praying for me. I hope things will get better this year. We'll see.
I have thought about doing some editing or writing for money. I think I could do it, but it requires more concentration than it once did for me. I find that I make more mistakes than I used to when typing posts, for example. Sometimes I catch them, sometimes I don't, and sometimes I decide I don't care and I'm not going to go back and edit. LoL
I will keep trying to push myself. Thank you for saying you are proud of me. It means a lot to me.
01-10-2018 03:58 PM - edited 01-10-2018 04:03 PM
Hi there, sweet @mistriTsquirrel! ❤️ So good of you to take time out to reply. I was just reading your latest posts here over my coffee break... Mercy! No wonder you are feeling overwhelmed, while trying to sort all of this out ALONE and battling depression. You have several medical conditions and medications that complicate one another. You really could benefit from ~ and you certainly deserve ~ a healthcare advocate. I wonder if your insurance company provides a list of those available in your area. My DIL (with lupus) had to have one for a while. For instance, an advocate could possibly intervene to get you moved up the list to see the specialist you have the most faith in. That may have already been discussed here. Forgive me, if so. I agree with @fortune that it couldn't hurt to check into the resources at the medial college, too.
A good endocrinologist can certainly help to connect some complex dots. I know zip about POTS, but can tell you that as I approached and then went through peri-menopause I had the worst PMS of my life. Palpitations with dizzy, light-headedness ~ feeling like I was going to faint, or leave my body altogether, especially while driving which never made me nervous before. Migraines, breathlessness, anxiety, irritability, sudden tears, nightmares, itching, skin-crawling sensations and numbness... along with the usual bloating, back and stomach cramping, restless legs, tension, etc. It can start quite early, but I remember thinking at the time... If the rest of menopause is like this; just take me now, Lord! Other medical issues and medications can interfere with hormone panels ~ giving false readings. My sister, who never had children suffered even worse and earlier beginning at just 36-y/o.
I was tested for everything from brain tumors to MS, anemia, thyroidism and heart disease, but nothing turned up. Too many doctors will then start thinking it's all in your head. It was a NP who stood by me through it all, and I'll never be able to thank her enough, though she has moved now. These symptoms gradually tapered off, but like you are doing, in the meanwhile I had to distract myself in gentle ways and practice relaxation techniques ~ including deep breathing. I could walk, swim and ride horses without your physical troubles, though, which helped me to unwind so much.
I wonder how you would feel in a heated pool ~ better or worse with the weightlessness?
Not suggesting you are nearing peri-menopause, just saying, I relate a bit to having some of these scary symptoms and struggling to get to the source of them. Sounds like yours definitely has an organic, physical origin and the chemical depression which started so early, could even be connected. Worst of all, you are motivated to do the things that can help you with one or more symptoms, but other symptoms prevent you from following through. That has to be incredibly frustrating! 😰
I understand ~ especially on this site ~ about not bothering to edit. You may well lose your entire post. You are mentally exhausted anyway. Anyone in your shoes would be. Yet your posts here are of the most concise and comprehensible to read. No scattery word salads trailing off into a stream of consciousness that is unrelatable. Nothing wrong with your cognition or communication abilities. Your writing skills, including grammar, punctuation and structure are intact. Once these medical problems are properly diagnosed and successfully treated... You can yet pursue your inner ambitions. They will live on, on the back burner until then.
Yes, I am so very proud of you for soldiering on through all these difficult odds and after losing your dear Dad. How could anyone not be? Just keep doing your best and I'll keep praying for the rest. You have a lot of great advice here from others who care and I am so moved to see that, since the internet can be such a harsh place.
I am doing well, thank you for asking. Just dealing with my sciatica again. Flares up whenever I stop swimming. I have another grandchild now ~ a boy! 10-months old, courtesy of our youngest son and his beautiful wife. He's the one I never thought would marry and she is a mobile veterinarian. They, like our granddaughter, Gracie's parents live local so I get to spend lots of time with him, too. I'm still working full time, but I have less energy and don't mind delegating much at all anymore. Just turned 57... Still keep the horses, our 3 lovable labs and Gracie's cat, Ms Sophie still believes she rules the roost. I love reading about your Milo and fortune's granddog, Jasper! ❤️❤️Like you two, I'm purging, decluttering and organizating a bit each day. Both home and office. Determined to keep things orderly this time ~ hah!
No need to reply to my rambling ~ just relax, continue to take care of yourself. I will check back soon. Leaving you with a big (((HUG))) and every hope for your well-being, dear one. ~Joy
01-10-2018 06:24 PM
@mistriTsquirrel wrote:
Actually, I wouldn't say my motivation has declined severely overall. It's more often the case that the way I feel physically prevents me from doing much. I used to be able to go for walks when I was on Cymbalta, but I can't do that anymore, because it involves standing for a long time. I would consider trying it anyway, but if I have to lie down during a walk...? Do I just lie down in a neighbor's yard? I think they would call the police.
I had to go to the UPS store the other day, and even though I had my compression stockings on and didn't have to wait long, I was still starting to feel a little light-headed. I was really crossing my fingers that it wouldn't take long, and thankfully it didn't.
I don't usually go anywhere, because I never know how long I'm going to be there before I'm going to start feeling light-headed and want to lie down.
I haven't started the midodrine because I just got a blood pressure monitor. The information with the medication is pretty clear about checking your blood pressure regularly while on it, and I couldn't do that. Now that I got one, I've taken some readings that have convinced me to change what time of day I take the Pristiq...which was another thing I was confused about. What sort of schedule should I have for the meds I'm on? My cardiologist just told me to take the midodrine 3 times a day, every 4 hours, and not before bed. Which has been complicated by another problem: my difficulty maintaining a day schedule. I'm so naturally inclined to be up at night, but I need to be able to make calls and do things that can only be done during business hours. So I know I need to maintain a schedule that keeps me awake during daylight hours. I can get on a schedule like that, but when I feel awful physically and need to lie down, it messes with my schedule. Most people can have some coffee, but I have to limit stuff like that because it affects my POTS and the vestibular problems I have.
So anyway, I'm just trying to work all of this stuff out. Figuring out how to put on the compression stockings was a challenge. Getting a foot through the ankle of one of those things is a struggle, and I have a sensitive area on the tops of my feet that I never let anyone touch. Unfortunately, a tight, scrunched up band of compression material has to sit on that area while I reposition my hands, and man is that uncomfortable. I also have to keep my nails short from now on, because I bent 2 of them back the first time I tried to put on the compression stockings (ouch!). I am kind of uncertain about whether or not they help. I still get light-headed when I'm wearing them. I think the effects of the Pristiq may be too much for compression stockings to offset. So on to the midodrine.
I'm kind of nervous about taking it, because you can't lie down after you take it (it can cause supine hypertension if you do that). So...what do I do if I get dizzy when I take it? I usually lie down if I get really dizzy, and that helps. Will the Klonopin affect whether I get dizzy when I take it? When should I take the Klonopin (in relation to the midodrine)? I just...I have these questions, but I feel like I have to figure things out on my own, because I can't make an appointment with the prescribing cardiologist now, as my new insurance doesn't cover him. And to be quite frank, I'm not sure he would be much help. I would bet that he would ask me what time I get up, tell me to take it at that time, and the next dose 4 hours after that, and the next one another 4 hours later. That's how most people take it. But I've got these other medications and the vestibular issues. The reason I still think of the vestibular issues as not necessarily due to the POTS is that the PT I had last year helped. And it does help with the dizziness when I regularly do the PT exercises, but it aggravates my POTS to be lying down and sitting up repeatedly the way some of the exercises require. So I just try to remember to do the one that I can do sitting, which was the one that I think helped me the most anyway.
Sorry, I guess that was all just me dumping my brain out. Can you see why it's taking me time to work all of this out? I don't have one expert I can go to who will guide me, and I feel like that's what would be really beneficial.
There is one POTS/syncope expert in my area. I called this morning and I am now on the waiting list to see him. Could be 10 months. Or I could see his nurse practitioner sooner, but if I see her, they will take me off the waiting list to see him. Not sure what to do about that. I think the nurse practitioner may be able to help me, but it would be a gamble, because again, if I see her I get taken off the waiting list to see the doctor, who is so well-known as an expert on things like POTS that he has his own wikipedia page (and it's rather impressive, IMO). The fact that there is a guy like this in my area, that he is willing to take new patients and will take my insurance is like winning the lottery as far as I'm concerned. So I feel really thankful that I can even get on the waiting list to see him.
I think I can figure out some of the practical issues (like a medication schedule that works, assuming the midodrine will work for me) on my own. It will just take a lot more researching and "figuring out" for me than it would for someone who is an expert.
I do think I need to keep closer tabs on my symptoms, because keeping track of things can provide clarity. Just having this BP monitor really helped make it clear to me that my Pristiq should not be taken during the time of day when I need to be getting things done. I guess that should've been obvious to me, but I reasoned that I shouldn't be taking something that raises my heart rate in the evening. I figured that would be like drinking coffee in the evening...messes with your sleep. But seeing the numbers, I can see that I probably need to take it after my business is taken care of, but not too close to bedtime. I'm back on a day schedule now (after much effort). Hopefully I can maintain a regular day schedule (maybe??).
As far as calling the teaching hospital, I may do that. Or I may be seeing an endocrinologist, like my GYN suggested (I was too overwhelmed at the time to go climbing up that tree). Many of the physical symptoms I have are associated with autoimmune thyroid disease. It's something to consider, especially since thyroid problems are common on my mother's side of the family. And POTS can be caused by autoimmune disease. I've had yearly thyroid panels, but--from what I've read online--people are often told that their thyroid levels are normal and go on to find that they have Hashimoto's thyroiditis by someone who is knowledgeable about the condition. It would be nice if that was the underlying problem and it could be treated successfully. I don't know. ::shrug::
Anyway, there are a ton of things for me to look into, monitor, write down, consider, etc. It's kind of overwhelming.
I hope you will keep that porch salted!! We've had snow here, and it doesn't seem to be icy, but I haven't been out in it much. I guess I need to check and see if I need to break out the salt.
I don't know about getting cable. When I've stayed at my mother's house, I've found that I often wind up streaming stuff on my computer instead of watching t.v., because there isn't much on that I want to watch. I've thought about getting cable again, but what I really need is faster internet...but it's not my top priority. Since I'm able to get myself motivated (not every day, but whatever), I feel like I need to be doing as much as I can. I never know how I will feel next month or a year from now, so these periods of time are when I need to do as much as I can physically do.
I'm glad you'll be getting your Jasper fix this week!!
He seems like such a doll!! I love seeing his handsome face when I come here.
I love how his paws are holding the sign. LoL And the shadow was a nice touch. And the fact that he is apparently 2' 1" tall, with ears.
My head is spinning! I can see why you are so overwhelmed! The first thing I would want to get a handle on is why you can't stand for very long without getting dizzy. You said it was better when you were on Cymbalta. That is worth noting. You don't know if the POTS is involved in your dizziness. I would make an appointment with the nurse practictioner to help you with your POTS symptoms to clarify that. You also said that your vestibular problems were helped with PT. I know that my inner ear problems were helped with PT. You can do some of the exercises for this at home.
If it were me, I wouldn't start taking midodrine right now. It would really be hard to monitor that drug along with what you are currently taking for now.
I know about the night schedule thing! I'm a night person. At one point, I was sleeping during the day and doing all my other stuff--post office, getting gas, fast food store, etc. Doing day stuff when other people were awake and things were open was impossible. So, I had to make a schedule where I gradually went to bed earlier and got up earlier. It took two weeks to get turned back around. WHN has the same problem. He is basically a night person, too!
I think WaJa has a good suggestion about trying to get a Healthcare Advocate. It sure would help you with managing your medications!!!
About your thyroid. Who diagnosed you with autoimmune thyroid disease? Finding out exactly what's going on with your thyroid is extremely important. As you said, some doctors are sloppy about thyroid tests and diagnoses. An endocrinologist could help with that.
I guess you need to set priorities as to which symptoms are affecting you the most. Then set up things to deal with these first. Setting priorities is very helpful in dealing with many of life's issues! You need to be able to take actions that help you feel better, but can't if physical symptoms persist. You're so strong!!! I would have a hard time coping as would most people!!!
HUGS to you, Mistri! I will talk to Jasper about you, Milo, and Heidi tomorrow! He always offers good advice! For example, see below!
Avoid Negative People!
01-13-2018 08:41 PM
@WaJa61 I don't know anything about healthcare advocates, so thanks for mentioning that. I'll have to look into it.
Your experience with your symptoms, all of the medical testing and seeing doctors sounds similar to mine. It is possible I could be perimenopausal. It won't be long before I'm 40. I'm not sure if not having kids has anything to do with when you start perimenopause, but if it does, that could be a factor for me.
Thank you for your kind words. It means a lot to me.
I was thinking about it today, and the last 10 years have been the worst of my adult life. It's been one calamity after another, and every time I think things can't get worse, they do. I would love to have a little bit of peace for awhile. I don't know if that can happen though.
I don't talk too much about my family here anymore, but things between my mother and sibling and I have been pretty bad since my dad died. They are the two people closest to me, but I cannot be close to them...and they can't be close to each other either. It is a mess. The whole situation makes me very sad, so I try not to think about it too much. But I wish things were different.
Anyway...
I don't really know anything about sciatica, but it sounds like you should keep swimming!! Congratulations on your new grandbaby!! Nice that they live close and you can see them often. It sounds like things are going well on your end overall. That is good.
I like reading about peoples' pets too. Sometimes I watch peoples' videos on YouTube of their pets' antics. It cheers me up. Milo the guinea pig has been a bit of a stinker lately. He has an aluminum pan in his cage that he goes potty in, and he has taken to chewing the edges. It worries me to no end, and I've started making a paste of cayenne pepper and water to apply to the edges, which deters him until it wears off and I have to reapply. I worry about him cutting his mouth or ingesting metal, so I ordered a plastic litter pan for him. It is a corner design. I hope it gets here soon and I hope he will use it. If he doesn't I guess I'll have to figure something else out.
Thanks for the hug and for your prayers, Joy. I'm sending hugs your way as well!!
01-13-2018 09:45 PM
@fortune The Pristiq causes my heart rate to go up. I also think I have hyponatremia (low sodium) from the Pristiq, which is a problem. And my blood pressure goes down. I'm not sure if that is related to the hyponatremia, the autonomic dysfunction in general or the Klonopin I'm taking to deal with the increase in heart rate. I'm trying to sort all of that out right now with the blood pressure monitor. But I have no way of knowing what my salt level is. And the readings don't account for how I feel when the furnace kicks on and makes me feel weird even though my BP and heart rate are normal (for me). It's too much for me to completely sort out on my own, but I'm doing my best to detect patterns.
This morning I had awful vertigo. I wound up staying in bed until after noon because every time I would roll over in bed the room would spin. When I got up to go to the bathroom, I realized that my inner ears felt a bit plugged up, so I'm guessing that caused it. They feel better now, and I don't have the vertigo at the moment.
I haven't started taking the midodrine, but I may if I'm able to see patterns in these readings. I don't take the Pristiq, Klonopin or salt tablets at the same time. I take my BP and heart rate to start with, take Pristiq and then wait. Then I take my BP again. If my BP is fine, but my heart rate is high, I take the Klonopin. If my BP is low, I take the salt tablets. And I still don't feel right most of the time, despite my efforts, but I'm getting by. The PT is kind of on the back burner, but I can still do one or 2 of my exercises.
I think I was unclear; I have not been diagnosed with a thyroid problem...I just have symptoms that could be due to autoimmune thyroid disease. I have a maternal aunt who has it, and she went through a few years of hell trying to get a diagnosis. She has neurocardiogenic syncope (which is similar to POTS) and Hashimoto's thyroiditis (autoimmune hypothyroidism). Hashimoto's tends to run along maternal lines. I never found out if my mother had it, because the pathology report after her thyroid was removed was supposed to contain that information (according to her surgeon), but it did not. She could've just gone undiagnosed; there's no way to know now. And my other maternal aunt (not the one who has neurocardiogenic syncope), has also had thyroid problems. But my yearly thyroid panels have come back normal, so I haven't pursued the possibility that I have a thyroid problem yet.
Thank you for your kind words, Fortune.
I really don't feel strong, but I'm doing the best I can. Thanks for the encouragement. I appreciate it. You've been so kind to take the time to talk with me. Thank you!!
I laughed pretty hard when I saw "avoid negative people" at the bottom of your post. I've been trying so hard to get along with my mom and be supportive, but man she can get so incredibly angry and judgmental that it's hard to stomach. I wish she would see a counselor, but I can't force her to.
Anyway, if you read my post to WaJa, you know that Milo has been a stinker lately. I swear, I worry about him like I birthed him. I noticed he's been putting on weight (he's starting to look like Eric Cartman from South Park), so that is the next thing I have to address with him. He needs more exercise, and I need to stop giving him a treat every time he wants one.
Let me know what Jasper said during his last visit.
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