erikainorlando

No - the metro was just the regular. The toprol is the xl..sometimes with the toprol tho, my hr doesn't go down like I want it to so at times I have to take a higher dose. BUT my chest doesn't hurt like it did on the metro.

I had to post that I have been using the real Toprol XL for a little over a month. Prior to this I had been taking the generic metoprolol. Since taking the real toprol, my chest pain has been cut in half and I just feel a little better. I asked the pharmacist what the difference between the meds was...she said they were the exact same (just the fillers were different). Has anyone else noticed their chest pain beng lessened on the real toprol...along with some relief all areas..?? Thanks.. Erika

Jana, I am so sorry you are going thru this. You are always such an insirpation of hope to those on this forum. I know loosing our independence really stinks to put it mildly!! I am right there with you sister on many days...altho, I am very lucky that I still drive and if I know well enough in advance I can usually make sure I am rested enough to get there...altho not always. This feeling will pass...you are loved here and you can really only do what you can do. Hang in there. Erika

Sorry you had to go thru that. Yea...they seem to all like to label a lot as anxiety. Now...I can get anxious...but that is not this obviously!!! Like I told my first PCP last fall....I have had a lot of anxiety in my day...and this is not that! She wanted me to go to therapy...I told her I would love to but I was way too sick to drive and "talk" for an hour....and then have to pay for it to boot!! might be time for a different doc...good luck. Erika

Boy - there must be a moon somewhere that is causing all these relaitonship issues!! You could read my post about my own relationship...I am much older than you and still have troubles in this department. I don't think I would move to that apt tho...doesn't sound good for you. I don't have any advice on staying or leaving. But I think you need to put your health first. You will hear plenty of good things here. It is a great group!! Welcome. Erika

Honesty, they tested and retested my SED rate. It was always pretty normal. So although I think it is an autoimmune thing...I am not sure it is a POTS thing. HR for me was crazy high but my SED rate was normal. Good luck!! Erika

Thanks guys.. Yogini - to answer your question, they were married for 13 years. She was sick and dying for about 4 years. I think we have a good relationship and are really headed somewhere (he goes to doc appts, helps with my rentals, helps with my kids..to some extent). But then I go to the house and see all these pitures of her...her kids have thiings going on...like a birthday party for the granddaughter (big SPanish party).. i was asked to come but then I heard that her daughter was having a slide show or the her dead mom...(bare in mind the party was for the 15 year old grand-daughter...a slide show of her dead grandma for a huge party of 15 year olds)...i opted out. Even my boyfriend said he thought that one was a bit much. Now her son just had a baby...you get the picture... I am not well obviously...and it wears real thin at times. I think I just can't allow myself to get so stressed...easier said than done. I am kicking out my renters...firing my handyman that is overcharging me...Trying to move forward in all areas I can...sometimes being so sick it is very hard to move forward...sometimes i am too sick to fight with the renters, handyman, boyfriend... I am afraid too that if I break up I don't sleep and I will get worse...altho I am sure that is not a good reason to stay. Thanks for all the well wishes and good thoughts...Erika

I apologize in advance for my ignorance...but no one ever recommended that I get IVIG. Is this because I only have POTS? I did get IVIG when I had Guillain Barre. I also had plasma pherisis (spelling here...not right I am sure) but neither one ever helped. I had so many treatments of it at that time. My mom was concerned that I would have a stroke from it so they stopped it...my body finally kicked in and I started to recover ... Is it considered dangerous? Thanks!! Erika

Hi. Thanks Janey for your kind words. It is a ton to deal with right now. And perhaps the reason we are feeling so alone in these relatinships is that they are not really commited. I believe this is a real, rational, response to a situation where we are alone even thos someone claims to love us...it is confusing...and we deserve support etc. (obviously i don't have the answers.. ) Jan - they were/are her kids. I am 46 and he is 58. Her kids are 33 and 36 years old!! So I don't think the parenting is an issue. But I do know he feels pulled. HE wants to sell. I never asked him to...he says he wants to move on but feels trapped by this monsterous home that he built because it was her dying wish. But she never made it. She died 4 weeks before it was completed. He is loving and kind...I love him and has been supportive of my illness. but I don't know if I can or want to live in her shadow. Clearly I don't want to...who would want to?? He says I don't have to...wants me to feel like I am "on first base". But it is clearly an issue. My father died when I was 22...similair situation as with these grown children...so I do kind of understand... To add...he is drowning financially as the taxes are incredibly high. He is a general contractor here in FL with no work. I am ill...with two beautiful kids and with quite a few rentals that are causing many problems. I can't work to supplement the loss of rent...nor can I sell My hr was just so high today...even on my toprol...I am glad for the support. No matter what is going on I really have to try to relax as my dys just gets so bad...I just felt so lost this morning when I wrote this...another one of these times that I will look back at and thank God for carrying me!! I really thought a few years back I had a handle on it all..I had it togehter financially and had gotten well after a horrible bout with Guillain Barre. Now everything has changed..I do get frightened and stressed...and wish I was well enough to work!! Thanks for letting me talk...thanks for your thoughts..stress is not my friend! Erika Erika

I normally can sleep and have a prescription for Ambien which helps especially when I just can't get comfortable with the chest pain etc... BUT I have been under terrible stress. I am a landlord and I have 4 people to evict for non-payment. One man post eviction keeps coming back and vandilizing the place. He is crazy and knows wehre I live. My savings is being depleted and I am worried. To further complicate matters. I have been having a terrible time with my boyfriend. He is gouchy himself about all his real estate losses. But the real problem is that his wife died 4 years ago (cancer). I knew her as well. I started dating about 2 years ago. But you walk into his house and there are 6 pictures of her...my picture in tiny and in the bedroom. He droons on and on about her. On one of my hospital visits he kept talking to the nurse about her. She had kids and when they do things they do includ me...but I feel like the ugly step sister. He hasn't put a ring on my finger. Says he has to sell his house first. Which was built for her!! Even has her name engraved on the pool.. After two years I want this to change...I want more pictures of me andless of her etc. He thinks I am trying to control him. I told him that it makes me very uncomfortable and feel insignificant in his life. He just got angry last night and said "well then maybe you don't need to be here....maybe we need a break". My heart is broken. This is making me sicker. I took an Ambien to fall asleep and woke up 5 hours later and here I sit. My HR is 137. Maybe I am over-reacting...I am not sure...I just have so much going on with the real estate..kis going back to school and I sure wish I had a boyfriend that loved me so much he wanted to jump in... I feel jealous of this dead woman and I feel so guilty for that.... Thanks for listenign...I have to take my daughter to cheerleading here in an hour...it is all too much.. Erika

I just read the definition of vasomotor rhinitis!! Boy...why do they not ever tell you this stuff!! I went to an allergy specialist, and 4 different ENT's on my quest last fall/winter...What is the deal?? I finally gave up after the realized the hr was my major problem and we have focused on that..altho my nose rune alot still and no allergy meds ever have helped!! Thank God for you all!

YES! I was so confused when I was first sick as my nose was stuffy and had some post-nasal drip. I didn't really care about that so much but I felt awful!! However, as my stuffy nose was my only symptom that I could really verbalize, we focused on that. Many months later after many unsuccessfull treatments with antibiotics and allergy medicines, an ENT told me the extreme BP and HR could easily cause problems with my tiny blood vessels in my nose causing it to run and be stuffy. I had all the allergy tests done and I am allergic to nothing!!! So I know this is dys related. It is worse for me after I have been up and moving around for a while (like everything else!!). All things considered, this is the least of my problems. But it did confuse things before we knew what was going on. Good luck! Erika

Hi!! I just want to say that if they didn't put me on toprol I wouldn't be able to function. It has given me back a limited life. Erika

I love what Julie said!! Altho...many times my illness is still defining me...I have to think that the longer I have it the more comfortable I will become and accepting of it and my limitations and no longer be so overwhelmed by it...I think I am getting there slowly. Somedays I am still angry and scared. It is a loss...of health and peace of mind. Somedays I lash out...honestly I do..but it is getting less often.. and those closest to me get it the most. For me it feels like I have been hit by a bus! I am slowly learning how to deal with my new limitations... . Seems like just another process...and I am so grateful for those of you who have gone before me and can tell me how you all have learned to live a new normal... If I am at peace with my circumstances...I am much easier to live with. My difficulties usually lie within rather than without. Erika

Hi Guys... Just need to ask...is there anything to help sweating? I sweat in the afternoon or after any real sustained activity...I sweat in really weird places too..like in my elbow creased...on my stomach.. I can sweat and be cold at the same time!! How is this possible?? It is like I am not really sweating from being hot...altho sometimes I get VERY hot and sweat as well. Sometimes I am just so uncomfortable I don't want anyone to touch me. I don't sweat like terribly...but non the same..I don't like it!! I don't even understand how I can sweat and not feel hot at times...?? And it is embarrassing!! like almost everything else I live with..if I lay very still for a while it gets better...I can get very hot at times too!! IfI get upset...I get very very hot very very quickly as well...like I need a fan! I don't think this is menopause..(I am 46)...I get regular periods and never had this before POTS.. What is this and can we make it stop!! Thanks. Erika

POTS is my primary diagnosis. I would love to believe it to be something else that could be corrected...but after I read and read..I am probably really only POTSY. Although that is enough...as most days I feel terrible.

Oh!! I think volunteering is a great idea!!! Most folks are so happy to just have a volunteer that they will take whatever they can get!! I studied for a test this summer and didn't even know if I would feel well enough to take it...but it is great for the mind to actually try to do something. I think Hospice is a great cause and if nothing else it can put our illness in more perspective (we might feel like it....but we are not dying). Keep us posted Erika

I have to say...aside from the BP and HR problems. I frequently have the IHB (Irregular Heartbeat Indicator) light on when I take my BP/HR reading. It is probably more frequent at night, at the end of my day. When I get up in the morning and am rested it occcurs less often. Any ideas..? Thanks. Erika

I just want to add that my experience with "selective particiaption". I do what I can when possible....when I am feel like I am almost dying my body is selecting not to partiicapte. Don't you wish we really had a choice,,!!

Well...I am divorced. But it had nothing to do with illness . I am in a relationship now...and probably mostly do things wrong...BUT I need to say my experience!! I believe that at least with my present partner, he WANTS to be helpful. He WANTS to take care of me. He WANTS to feel like he is the hero for me. BUT I on many many occasions get frustrated because he is tired, or comoplaining of his shoulder hurting while I am holding one eye open because I am so dizzy. I get angry when he forgets to help me across the parking lot because I am dizzy. I forget that he goes on every doc appt with me and seves me when I am too ill to stand etc. etc. I love him dearly. I need to validate how hard this is for him and cut him some slack when he forgets or can't imagine how bad I feel and how often. I don't say it often enough just an "I love you and I appreciate how much you are there for me". I have more of a tendancy to say "I feel so sick. I can't believe you didn't ask me how I feel". This is just my story with my current relaitonship. If this makes any sense... Erika

Boy!! Em - you really write beautifully. That is exactly it. We all...at times get to a place whee we never imagined we would stand. Then the only thing we can do is hang on and ask God for the dignity and grace to stand tall (or sit with POTS) and weather the storm. I am sorry you are going through this. I am really jumping on what everyone else posted...but I do agree with Nina...I think you will be much happier in the long run... All the best wishes for you. Erika

i am sure it is possible. I think I have read this as well. While I don't have that, sometimes at the end of the day....when I am very dizzy I actually have to close one eye to see well. I can't even explain how ill I can feel after exercise. I still try but I don't push it if I am already pretty bad off. It is just not worth it. The pressure in my head almost always there. Today has not been a good day....I am not sure why. I think we just have those days. I am on my toprol and just took my hr and it is 123. BP is 88/68. So here I sit.. Good luck. Erika

Wow....I am so sorry. I know it is very hard...I am fighting for words...there are none. I would like to say that you are better off without someone who would leave you when you are sick...and I do think that is true...but I know it is hard... I think I have the tendency to get very demanding and angry at my boyfriend that he doesn't do more for me or ask me how I am doing. I get so frustrated at his lack of understanding at how hard things are for me sometimes...I guess I should be more grateful that he never complains that I am ill or expects me to do things like go to famimly functions. His wife died of cancer. I know he probably thinks "wow..I got another sick one.." but he doesnt' say that. I just get so frustrated that I probably take it out on everyone...once I told him that if I could I would leave me!! It can be very challanging...prayer. I do believe in the power of prayer. All the best. Erika

Thank you!! I will take a look...

My neurologist is thinking of sending me to Vanderbilt rather than Mayo as Vandy is in my network. Does anyone have the name of someone good there? I know someone there was looking at folks like me who had Guillain Barre and then POTS.... Thanks all! Erika