tammyokc

Hi and welcome! When you said wired but tired, I about dropped my teeth. That's how I describe myself all the time. I have been in that state constantly since October 4, 2002. I am new to dysautonomia/POTS myself but have had it since I was nine. I'm 30. The only thing that's helped me is Ambien to sleep at night and occassionaly Atvian (anti-anxiety). I can't take new meds either. I've tried beta blockers at the losest dose and they make my pulse go crazy and it's already 110 resting. Wish I had more advice for you. I think what LindaJoy said was right on the money. You have to be honest with your children but not present it in a scary manner. I have the panic/anxiety with tachycardia, IBS (mostly constipation), non-sweater to a sweater, I also have major insomnia. I am never tired just constantly wired and edgy and I feel everything, even the slightest of sounds makes me jump. Have you read about the sympathetic and parasympathetic system? It explains a lot and why we feel EVERYTHING 10 times more than normal people. I think our sympathetic nervous systems are stuck in high gear. Here's a website that helped me tremendously. http://www.isma.org.uk/stressnw/parasymp01.htm Stick with us, everyone here is awesome at helping. Praying for you!!!

I have that too! I call it alternating constipation and diarreha but I don't have the severity like you speak of! I am so sorry!!! I have horrid constipation for days then the diarreha for a few hours then right back to constipation. Yes, I wish I could help more with the physical problems you have and offer advice but I can only tell you mentally what I'm feeling and hope that helps. I also don't know that I ever will accept this. I am bitter but for the most part I have to know this life is but a stepping stone to my real life. I don't know if you believe in God, but He is what gets me through even when I am down right angry. God can handle your anger, depression, bitterness, and devastation, He is a big God! And yes God allows our suffering and could take it away in a second and heal us, but since he hasn't (and he might you never know) I have to believe this is all for a greater purpose that we won't understand until years later. So I keep my faith and hope alive. I too feel like such a burden on my husband and parents even though they couldn't be more helpful and WANT to help. I always wear myself out trying to pretend nothing is wrong but I always pay for it so I am trying to get better at letting them help. I'm too sick to pretend much lately. My parents wish they could take this from me and they hate seeing their little girl suffer, even though I'm 30!!!! About my husband, I think he too gets numb to my health problems but that's cause I've been sick so long. But he is never insensitive. My husband has told me several times when I ask why he doesn't get as upset as I do anymore, that it's just too hard on him to go to that place. And if he were a crying, sobbing, bitter mess than who would keep us afloat when I can't find my smile and going through my darkest days. So I think whoever our partner is....they have to come to some comfort level with it themselves. I am very blessed that I have married a sensitive Christian man and he knows that I am a tornado when I feel well (getting things done) and very highly motivated so when I am this sick, he knows it's not my choice and I that I hate it more than anyone! On the other hand, I have always been able to have some good days and be me again a little. I just hope since I've been feeling bad for so long now and the "real" me hasn't surfaced in awhile, that he will continue to be the same great guy!!! I'll let you know if he changes! I think we have to try and give our husbands a break. This isn't easy on them either and men just aren't as good at expressing themselves as we are. My husband works from home and can get lost in his work and it's a good escape for him and I'm glad, but then I can get resentful because I can't escape this!!! But it's just as unfair to him as it is to me in a way. Neither one of us asked for it. If you can't get the sensitivity from your husband at times, call your other family members that love you unconditionally! That helps on really rough days for me. I always want my mommy! And some always want their dads or their kids. And for those that live alone, they find someway to have the strength to get through. We all have to play the cards life has dealt us and even though ours may not be the easiest, it's all we've got, so we have to stay positive and be thankful for the health that we do have. Not sure that I helped any.... Just please never think you are alone cause you are not. We are all here for each other... PS: I may sound positive and like I'm handling all this really well...truthfully I'm just as devastated and scared as heck that I won't be able to return to work and everything everyone else is worried about. It's always easier to give advice than to heed it! PPS: And if your husband is just one of those jerks we all hear about, I'm sure others on this site can relate and give you their side of the story!!

Hi there, I can totally relate to your work situation as well as a lot of your POTS problems. I am in the same boat right now work wise. I work at a college that I LOVE! I am only 30 and started there when I was 18, so I've worked there almost half my life. I have been sick the whole time, I just didn't know it was POTS until 2 months ago. I just lived with my illness and white-knuckled work everyday. But 3 years ago, I woke up with uncontrolable heart palpitations and anxiety and have never been able to make it go away. I went from full time to 75% time and worked for another 2.5 years like that and finally on Jan. 18, 2005, I had to take a leave of absense (it's been over 2 months). I am still on leave and I just don't see myself getting better, and I'm trying to decide right now whether I can go back to work or not. I feel horrible they are keeping my job for me. The guilt is overwhelming. I want to return so bad, but in my heart I know I can't right now. I want to tell them to hire someone else, but my hope is that I can go back soon and so I'm selfishly still trying to get better fast!!! It's a tough place to be in. I have to think of my health insurance and income that I'd lose and I'm scared I won't be able to get disability so these are other factors. Ho hum. I can't tolerate any meds. either because they all send my heart racing. I have tried several beta blockers (nadolol 5 mg), (Atenolol 25 mg), (Inderal 2.5 mg), Midodrine to raise BP - 2.5 mg , Florinef .1 mg...and nothing has worked and these are at very little doses. And when I say they didn't work, I mean they made me worse!! I also 2 yrs. ago went on an organic, sugar free diet and took the most expensive and "best" vitamins out there. I researched and read books and watched health shows and still nothing seemed to work for me. I have a lot of GI probs. also and take some probiotics (Garden of Life - Primal Defense) but it doesn't work most of the time. I stay majorly constipated! Do you have diarreha? (sp?) Sorry to be so blunt! So....all I can tell you is to try not to panic, give it some time (even though you don't feel you have any), trust in God, realize that the world won't end if you can't go back to work even though it feels like it, and keep your faith and hope high that one day you will be better! Lots of POTS patients have some bad years but eventually can lead somewhat normal lives. That's what I'm hoping for! What's so hard about this is you have to go through a grieving process (and mine hasn't even fully started yet) but I know that I'm going to have to soon grieve the loss of the life I knew health wise and then grieve the loss of the life that I knew as a working, contributing citizen. I also feel guilt over not being a full-time wife and able to do the things a wife does and it can get very overwhelming, but as everyone says on this site...we have to just keep pressing on, do the best we can, be nice to ourselves and enjoy our good moments, trust that one day we will all be better and stronger people for having gone through this. Trust your heart and try to let go of the things that are beyond your control. Thinking and praying for you...

Well I have been on the .1 patch since 4 pm yesterday and it is 10 am the next morning. Last night I felt an erie calm, like the calm before the storm. Which was somewhat welcome because I'm use to feeling anxious and wired from major adrenaline rushes. I felt kind of light headed and spacey. I took some ambien 5 mg (like everynight) but it didn't work so I had to take more than normal (another 5 mg). With each passing hour my blood pressure got lower and lower but my heartrate kept increasing so I tried to take a beta blocker (Nadolol 5 mg - which only makes my heart feel like it's beating through glue so I never use it but I was desparate) and my last bp was 71/51 and heartrate 54. I felt like I was going into a coma. Now that my hubby has fixed me some eggs, I am starting to feel a little better but still groggy and have an underlying hyper feeling. I just feel strange. I'll stick with the patch though and see if over the next few days I feel better. I'll keep you posted. I don't feel bad enough to stop it so maybe my body just needs to get adjusted.

Oh!!! Good to know! Clonodine - Pill Catapres - Patch Just got my patches so I'll keep you posted on what they do. I have Patch #1. Well crap, my patches say Catapres (clonodine) on them so they must be called both. Oh who cares! What Emily and I want to know is if you took the pill or the patch and what it did to you...helped you or worsened your symptoms. Ernie, did you take the pill or the patch?

Hi Danelle, I agree with Gena. I avoid the ER at all costs and try to ride what you are talking about out. But if this feels stranger than usual to you and you don't think you can get a hold of someone to come be with you, then get to a doctor. When I truly feel panic like you, I take Ativan but a lot of times it doesn't work and the only thing that does help is time even though at the time your body feels like it's totally out of control and you are going to die. So you have to judge for yourself. Do you think this will where off and if you had someone there you'd feel better and could ride it out, or do you think you need to see a doctor??? Try to calm down and remember if you've felt this way before and what the outcome was. I'm praying for you, let us know!

Oh man Emily, I think I'm going crazy! I just found out that Clonodine patches are not called Clonodine, it's called Catapres or something like that! The phramacist said the U.S. doesn't have a patent for Clonodine! Then why do they call it Clonodine if you can't even get it here!!!???? They said the NAME BRAND is Catapres and the GENERIC NAME is Clonodine. I've never heard of anyone calling a drug by the generic name when they write a prescription for you especially if they can't even get it in the US!! Why don't they just call it by it's namebrand since it's the only form you can get? I'm so confused! If anyone can shed a light on this subject please do! Those that have taken the patch vs. the pill or the pill vs. the patch, please let us know your experience on them and what the name of the patch/pill is...Clonidone or Catapres (sp?). Also do you all take Clonodine/Catapress and a beta blocker together???? I read on the internet where it says not to take Clonodine with a beta blocker. I have low blood pressure, it's weird to take all these things for high blood pressure when that's not our problem!!! I know it is for some but aren't the majority of you on these meds. have low blood pressure? Thanks!!!

I agree I feel weak until I eat, especially in the mornings. I was told I had hypoglycemia (low blood sugar) for 17 years and now I know it's POTS. I do feel better after eating sometimes so I know I have a little bit of low blood sugar but my weakness is mostly due to low blood pressure. It's hard though when we don't feel hungry but know we need to eat. I keep crackers and such by my bed and small bottles of gatorade. I try not to eat heavy carb. meals and keep it light. I feel hungry only 2 hours after a meal and have a lot of adrenaline so I agree our metabolism must be up cause of our fast heart rate!

Yes, Happy Easter all! May it bring a new sense of life to our own suffering. Here's to better health we can all rejoice in! Glad to be sharing the day with all of you! Here's to better ones...

Hi Linda, I totally agree with everyone. In fact I've been in that state for 2.5 years now with no rest except from Ambien at night. I feel like I'm in a complete crisis mode and nothing helps. Not my faith, family, or things that normally make me smile can help during the really adrenalic times. I have taken Ativan (anti-anxiety) but it doesn't help much. Sometimes if I feel it coming on strong and I've been there for a while, I take a little Ambien (sleep aid) during the day. I bite off the tiniest little bit of the top of the pill and let it dissolve under my tongue. It's the only thing that helps. But I don't recommend it. For me, desperate times call for desperate measures. When I try to explain this to my cardiologist, I watch what I say cause I'm afriad he'll think I need to go to the looney bin because I feel so out of control with the heart palps., anxiety, and adrenaline rushes. Thankfully my husband is always with me and can vouch for my sanity and that I have always been a happy, easy going person. Ugh...wish I could help you more but I'm trying to get answers for this also. Maybe it will help you to know others know what you are going through. I just ride it out, and somehow God sees me through until a better moment.

Hi all, Thank you to Steph37822, Merrill, Runnergirl, DancingLight, Blackwolf, Emily, James, Mighty Mouse, Richland, etc? (and I haven?t even talked to most of you!) Also thank you to those that I just can?t remember your usernames at the moment (brain fog!!), I?ve read so many posts I?m more dizzy than usual. I am reading a lot of old posts today regarding anxiety, adrenaline, and insomnia. I am new to the site, not new to sickness!! I have been sick for years and the last 2.5 years have been unbearable. I white-knuckled work for so long and now I am on leave and afraid I won't be able to return. I finally after 3 years of exhausted searching (sound familiar!), have found out I have POTS. Your posts sound so much like me especially the ones about not sleeping and having so much anxiety and adrenaline. It seems you have become such good friends with those on this site and I am in hopes of that too. I just hate posting everyday about how CRAZY I feel right now, so I've been asking simple questions. Wish I could have joined when my upbeat, fun personality was still in intact. Anyway, your posts have been most inspiring to me and I wanted to let you all know that! Thanks again for being uplifting even in the toughest of moments. I?m trying to stay that way, never felt so close to a nervous break down in my life and it?s scary!!! God bless you all. tammy

Hi Runner girl, I will contact you personally about the tests you have had run. For the record I have taken Ambien EVERY night for 6 years under the care of a doctor and that's why I'm wondering about those that have taken it for years everynight if they find they have heart palps and anxiety. It's hard to know what's POTS and what's a drug withdrawal. Like I said, I'd just stop but I'd have to be in the hospital or something cause my body couldn't function on no sleep so was wondering what others experiences were on Ambien if they took it everynight for awhile. Thanks!

My question to you is about your Ambien. How long have you taken it? How much do you take? Would you sleep without it? I have taken it for 6 yrs. The first three yrs. I took 5 mg, then went up to 10 mg. Now I take 5 mg and let it dissolve under my tongue at 10 pm and then after I wake up in 3 hrs. I take another 5 mg or I wouldn't go back to sleep. So I still only take 10 mg a night but not all together. I have wondered if this is why my heart palps and anxiety came on. I know that with POTS you have tachycardia and anxiety but do you think our bodies are so use to Ambien during the night that we are withdrawing during the days and it makes our POTS worse? I just wondered why after I switched from 5 mg of Ambien with no problems to 10 mg, I started having the anxiety and heart palps a year later and wondered if it was related. I'd stop my Ambien to see but I have POTS with high adrenaline surges 24/7 and if I didn't take my Ambien, I would get no rest and I'm afraid I'd fling myself over a cliff if I had to go on NO sleep!!! Also I am never tired, always wired. I can't nap during the day or ever feel sleepy, just exhausted! I always try to take the least amount of drugs as possible and cut everything into 1/4s but Ambien is one I?ve become so tolerant to that I do take maximum doses most nights. What are your thoughts on the drug Ambien? I call it my miracle drug but now I'm wondering if it's making things worse and I just don't know it. Anyone feel the same?

I received a reply to a post about beta blockers that I found very interesting. The person said that a generic brand drug made their symptoms worse and a name brand helped her but vise versa in someone else she knows. I may have that backwards but the point is still the same. I have always known that generic brands don't HAVE to have exactly what's in the name brand only a certain percent. So what are we supposed to do? POTS patients try several drugs (sometimes a new one each week) so are we supposed to then always go back and ask for the name brand if the generic didn't work or made our symptoms worse? Most insurances won't let you get the name brand if there is a generic. I have gone through 5 drugs the last two months, so do I need to start again and ask for the name brands in all 5 drugs? I don't want to pay a $25 copay for a full bottle of generic that collects dust because it didn't work to only get a $100 dollar bottle of name brand that doesn't work either. Any thoughts or comments? Thank you to the two people that replied to my post on "Beta Blockers...why are there were so many? This is a very interesting thought! One more thing, I noticed a few years ago when I tried Lorazepam the generic for Ativan it tasted sweet under my tongue and the name Watson was on the pill and it helped a little. Now I have started Lorazepam again and it tastes bitter and doesn't help. It is still Lorazepam but made by a different company (the name Watson is not on the pill), so does that make a difference also? How on earth can you win with so many different drug companies out there competing?

No I don't have a virus, this has been going on for years trying to find a beta blocker so I stopped for a couple years and trying them again. That is a very good question about what people mean when they say it didn't make a difference or didn't work. When I say something didn't work, I mean it made my symptoms MUCH MUCH worse! So to clarify. Nadolol even at the 2.5 mg made my heart feel TOO slow like it was beating through glue. Propranolol made me WORSE because my heart felt like it was faster and then slow and the faster and then slow. Atenonlol - I didn't feel any difference good or bad. I guess what I'm looking for is something to make it (the fast heart rate) better and not worse. Any body take a beta blocker that noticed RIGHT away it helped?

Opus88, Propranolol and Inderal are the same beta blocker. Propranolol is the generic name for Inderal. Can you remember which beta blocker you took that made you worse years ago? If not, no biggy, just wanted to make sure everyone knew those were the same drug. Thanks for posting.

guvna2004, I am lifting you up to our Heavenly Father right now. This tests all of our faith and trust and strength. If it weren't for God and family, then forget it. I find when my faith is low and things seem like they can't get any worse, I have to start thanking God for my many blessings and start claiming my health and thanking Him that it has already come to pass. I thank you Father that my heart and body are in perfect alignment with your will, I thank you that my blood pressure and heart rate are in balance, I thank you that I feel anxious, but I am calm in you. I thank you Lord that even though I don't understand this, you do. Thank you Father for suffering for me and in turn I can suffer for you. Show me the way, give me the strength and endurance for mine is weak... Thinking of you my friend and praying for your strength today and everyday!!

Gena, I just had to respond and tell you that even though times are rough for you, you have made me smile in your pain... Your post...Fell in a POTS HOLE...made me laugh out loud. That's the first time I have heard that and it is SO true. I'm new so maybe it's been said before but !!!! I'm going through a rough time too and we all have to just stick together here. Thanks for the smile my friend!! Question: what are the benefits of Licorice Root? (I'm kind of a health nut myself but haven't tried this)

I'm curious after reading about the beta blockers (BB) everyone has been/is on, which have/have not worked for each of you. Is there a real difference between them? And if not, why are there so many to choose from? If one doesn't work, then should we keep trying them all? What beta blockers have you all tried, which ones did and didn't work. at what dosage and how many times a day did you take it? Beta Blockers that DIDN'T work, dosage, how many X's a day used: Atenolol 25 mg - didn't notice a difference Nadolol 10 mg - slowed heart rate but felt like it was having to beat through glue Inderal 2.5 (2-3 times a day) - so far feel muscle pain and diarrhea Beta Blockers that DID work, dosage, how many X's a day used: None so far Thanks for your input!! Blessings!

Thanks Nina and Amy. Nina - yes I had a TTT in Feb. 2005. It was positive. Heart rate went from 70 to 165 on first tilt up. Almost passed out after maximum dose of isuprel but didn't. Heart rate went from 140 to 50. I have been all over NDRF and have posted some but just found DINET. It's awesome. Amy - I am a total health nut. Went sugar free and organic back in Oct. 2002 when heart palps. and anxiety came on. But it was too expensive and I didn't notice any difference so I am back to eating normal. Still use organic milk, farm hormone free eggs, and other basic products and watch my carbs mostly. I take a probiotic, b12 vitamins that melt under your tongue, liquid magnesium, olive leaf extract, and vit. C. Use to take high dollar multi-vitamins but didn't see a difference and again too expensive! Toprol? What other beta blockers have you tried? And what were your side effects from them? God bless you too for helping!

Hi all! Thank you all for your concern for each other. I know it's the only way to get through this (well except for faith in God and family). Just to know there are others that truly understand...well there are no words to describe it. I am 30, almost died of cancer when I was 20, been sick all my life, non-functioning for 3 yrs, and only diagnosed a couple months ago after endless search through doctors and tests...sound familiar!? I white-knuckled work until Jan. and now am home bound and afraid I?ll have to try for disability. My biggest symptoms are the heart palps (resting heart rate 110-136), anxiety, insomnia, adrenaline rushes, low bp, muscle pain and weakness and uncontrollable itching for years. I am never tired EVER! I stay in a wired state at all times. My sympathetic nervous system is stuck in fight or flight. It has been for 2.5 years. I feel completely exhausted emotionally, mentally, and physically but if it weren't for Ambien I wouldn't sleep at all. This may sound extreme but it's true. Anyone else have this? I don't know how much longer my heart can beat this fast with no sleep and keep going. I feel like I am dying. I have tried beta blockers (Inderal, Nadolol, Atenolol), Midodrine, anti-depressants, anti-anxiety, so many other things. Right now I am trying Midodrine but I am so hyper sensitive to meds. I wonder if 2.5 will even do anything. I always cut my pills down to 1/4 of what is prescribed and I still have awful side effects...does that mean that I won't ever be able to tolerate meds and should just give up and live with this and quit wasting the money? With the Midodrine I feel like my hair is standing straight up with chills and my heart is beating even faster, is that possible with such a low dose? When do you know a drug is not going to work for you? I know the best thing to do is type things in the search engine and read what has been written and I've done that for months and am so dizzy from it. I guess I just need some reassurance and know that even though I'm new to this site, I've found some good friends that will keep me in their prayers?you guys are definitely in mine!! I guess I?ve seen so many posts today about some having babies or working and I?m thinking, HOW? Usually I?m so positive, must be depressed today?sorry?ho hum? tammy in oklahoma city (thanks for helping all of us new to this site!)