Any words of encouragement?

[DSM3KIDZ]

I hope it's okay that I vent here so much. I'm just lost and not coping well. I feel alone and have wore out all my resources. I feel like a baby because I've been crying for like 24hr straight. I feel like I can't breathe anymore (emotionally) I have been ill for almost 1 year and since than alot has come crashing down because of this stupid unknown about illness. My supportive husband is at wits end and became unsupportive about two months ago. He still helps out but pretty much closed me out and ignores the fact I feel so horrible and my marriage is suffering from this. I'm financially buried because I spent so much on alternative care, meds, etc. My kids aren't as well behaved as they were when I was consistant with them (very hard with this illness).My mother and only helper is backing off alot. It just seems like everyone is giving up on me including myself. What do I do now? I can't face this alone. I'm not that emotionally strong.

I know things could be sooo much worse. My heart goes out to alot of you. Maybe things will be easier when the kids are older and maybe not. If I'm not nauseated I have a migraine. If I'm not nauseated or don't have a migraine I'm extremely fatigue and on most days I deal with all three.

So if anyone has any words of encouragement please send them my way I'm in need of advise on coping because I feel like I'm losing myself and don't know my purpose anymore.

Yes I see a counselor and no I'm not open to anti depressants (can't tolerate them) My hobby is scrapbooking but that hasn't been helping. It's actually making me miss the person I was, the one I didn't hate.

Dayna

[janineerrn]

Dayna,

Im sorry your at the place where your at. I wish I could help, been there myself. I also couldnt tolorate antidepressants. You should know by now that POTS affects your nerves, which includes the brain. Leaving us all with the eventual depression from the actual syndrome (not just the stress and life issues we deal with) From a POTS standpoint an antidepressant helps. I know you say your not open to them and you cant tolorate them but, talk to your doctor about lexapro.

I couldnt tolorate any of them either, I tried many and had horrible side effects. So this is what my doctor did for me. Started me on a half of a lexapro everyother day and gradually over weeks and months increased the dose. 2 weeks on 5mg every other day, then 2 weeks on 5 mg daily, then 1 month on 5 mg every other day and 10mg on opposite days ect... I can now take 20mg a day with no side effects and even feel horrible if I run out or miss a dose. I turn into a crying baby with out them.

Lexapro is a milder form of celexa. It has the least amount of side effects of all the antidepressants and my doc says it helps the actual POTS and would have put me on it even if I was not depressed because it helps stimulate the nerves that are affected bty POTS.

I have to admit that starting the medication did 2 things. 1) I despise the stigma of being on an antidepressant. 2) I did feel a little strange on the med for the first 5 or 6 weeks. But now after 1 year on it I cant do without it.

I know your not me, but at least try and talk to your doctor. The doctor that knows the most about your POTS. He can explain why the ssri helps in POTS.

I send you a big hug and hope you can find some relief from the stress in your life and know your not alone.

Peace

Janine

[DSM3KIDZ]

Janine- I tried Lexapro 5mg for 3 days. It made me extremely nauseas and made me feel like I wanted to crawl out of my skin. Maybe I could cut it into 2.5 mg and start on the regimin you did. My neuro just prescribed nortrypline (I think that's how it's spelled) it's an old antidepressant for preventing headaches. But one of the side effects is orthostatic upon standing so that would probally make POTS worse? Did Lexapro help with headaches? Thanks for the reply. I'll give it some thought.

Dayna

[Poohbear]

Dayna,

I hear you!!! This is such a difficult disorder to deal with and it seems like it totally turns your life upside down sometimes.

I'm kinda in a similar situation as you right now...feeling like my support system isn't very supportive right now. I've been crying off and on since yesturday and yet someone will call and say something stupid like, "Well you don't sound like you are upset" . I don't have any good answers for you on this one. My experience is that this is a huge roller coaster with highs and lows and sometimes I just have to survive through the lows.

Can you talk to your family and tell them how you are feeling? Sometimes just letting everything on the table will help. You can let them know that you understand they have their struggles as well (it's hard for loved ones to see us suffering and in so much pain and to know they can do little for us sometimes). Let them know you don't feel they are being supportive and ask them why and if they need something from you they aren't getting. Again...the key here is trying to keep the lines of communication open and being honest is the only way they can begin to help.

I am also one who isn't able to tolerate meds no matter how slowly we've introduced them. I've tried every SSRI on the market as well as others that aren't in the SSRI class.

Sometimes, all I can do is cry and sleep and try to escape my feelings. Sometimes getting involved in a movie or a book helps, sometimes writing my feelings in a journal helps and sometimes I put together a collage of pictures, words and images about how I'm feeling. If you are a scapbooker maybe this would be good for you....try a collage about how you are feeling right now. You could share this in counseling as well to discuss how you feel and where you are at right now.

Please know there are many on this site that care about you!!

[janineerrn]

Dayna,

The lexapro helped with headaches and a lot of other things too. Ill see if I can find the article I read about lexapro and POTS. You should really talk to your doc about doing some kind of gradual increase. I had strange crawling skin sensations and many other side effects but I was encourage to hang in there with the promise that it would eventaully help and it did. Its was hard. But I was so deep in a hole at the time I would have done anything. It took a few months but again, I can do without it now. Worth a shot....

Janine

[MomtoGiuliana]

Dayna,

I have been in a difficult place with POTS in the past too, so I have a sense of what you are going through with your family. It is hard for all of you when you are not totally functional, yet have such an important active role to play--being a parent to young children. I agree that talking with them about how you feel physically and emotionally may be helpful. My husband would easily forget how terrible I felt b/c I was good at hiding a lot of it, especially once I started getting better (meaning, no longer bedridden with POTS--but still pretty sick).

Regarding SSRIs--they do frequently help with many POTS symptoms, not just depression/mood disorder, which is why they are often prescribed for POTS. But they don't seem to help everyone. I think one theme I have noticed on this forum with SSRIs is that many who have found it helpful had a pretty rough adjustment period, and found they had to start on very small doses. I got WORSE on an SSRI--for about 6 weeks--instead of fewer symptoms, I had more symptoms, including bad anxiety and GI symptoms, and some symptoms like palpitations, dizziness and weakness grew worse. I told my electrophysiogist that I could not tolerate being even sicker, and he said this was common with starting an SSRI when you have POTS and he strongly encouraged me to ride it out--for 2 months. The 2 months were an eternity--but after the first 6 weeks, I noticed very slow improvement in symptoms. I am now, 2 years+ later, what I would define as stable. I take 20 mg of prozac *a week* now (the "lowest dose" is 20 mg a day--which is what I started with and stuck with for about a year.) I have tried stopping it altogether twice and each time I start to get sick again. For some reason, what is generally considered a very tiny dose of SSRI, does wonders for me. My sister also has POTS and has had the same experience. I have read the eventual benefits POTS patients experience has to do with the regulating effect the SSRI has on the autonomic nervous system.

Anyway, I just wanted to share my experience with you. I know that we are not all alike in what meds work best for us. What helps one may not help another. My electrophysiologist told me that in his experience low dose ssri's help about 50% of POTS patients, which is why he likes to try it for 2 months with every patient to see if it will benefit them.

Hope tomorrow is a better day for you.

Take care,

Katherine

[MightyMouse]

Dayna, try not to close the door on a viable medication option based on a 3 day experience.

I felt just like you described when I took Celexa the first time five years ago-- it lasted about a week, and then the nausea and the hypersensitivities to everything (wanting to crawl out of your skin, edginess, etc.) all died down completely by week two. I briefly had a return of the symptoms when we upped the dose (nausea mostly), but had no symptoms when switching to lexapro. I'm only on 10 mg...and I think I only took 20 of Celexa?

I was fully ready to call it quits with the Celexa by day five (day one, two and three were among the worst I can recall...day four and five were mostly nausea, yawning that provoked dry heaves, and then it finally started slowing down/backing off). My family and friends...and Dr. Grubb were the reasons I stuck with it. That, and the slew of friends w/ ANS disorders who had made some gains on SSRI's. It's not for everyone, but you really do need at least two weeks to know if it's a yes or a no.

On Celexa and, later, Lexapro, I have much better blood pressure control, and vastly improved gastro intestininal functioning. Additionally, my stamina is better while on Lexapro. By the way, after 2 years or so, I thought that the SSRI's might not be helping me, so I started to wean myself. My tachycardia and bloodpressure went crazy, and my GI system stopped working (gastroparesis). I had to confess to my doctor that I'd attempted weaning, but as I reintroduced the meds (ugh, and redid the nausea/edginess), everything improved again. Live and learn.

Honestly, I still have a terrible time mentally coping with the idea of taking medications... and taking them long-term has been a process of acceptance and denial... I know many of you have been there. I go through the cycle of refusing meds then re-accepting them over and over again. I think it's all related to feeling so darned out of control of my body.

nina

[corina]

Dayna,

I think we all are having these episodes. It's part of POTS. I'm sorry it's your turn now! What helped me, was being open and honest with my husband. Tell him that you can't miss his support, that it means a lot to you. If you ask him to help you with something he might answer : not at this time (let him choose his own time) but that's okay, as long as he helps you. Ask him what fe feels about you being sick. His answer might be a shock to you, but at least he feels that you want him to be honest. This way you can both listen to eachother and tell eachother how difficult it is having POTS/being a partner of someone with POTS.

You need to be open to your children as well, because they feel that you're sick and take advantage of you. How sweet they are, they will do that, because they are children . They KNOW/FEEL when you feel weak or bad and will try to get what they want (extra computer time, extra candy, not wanting to go to bed), because they know that you can't have all the trouble at that moment. I told my kids how I feel, what POTS does to me (not everything, but the things they can understand) and that I need them to help me and listen to me. If I'm too sick to face their arguments I tell them or ask their father to take over.

My kids, husband and I know we're different from other families in some ways. My kids (the sweetest in the world ) sometimes complain about their tasks in the house but they are allowed to do that (within limits, because POTS isn't MY fault either). But having the possibility to express themselves (again, within limits) helps everybody.

Also talk to your mom. She might be backing off because she doesn't know what you expect from here or the trip is too long, or she finds it difficult with the children. You NEVER know what people think, unless you ask them!

I really hope this helps you a little.

warm wishes,

Corina

Oh and Nina, if you read this, I once was so angry about all the meds I'm needing that I threw them all on the ground and stamped them to powder! It made me feel sooooo much better . Until I realised I had to call my doctor and order new ones (and had to explain why I needed new meds at that moment ). I explained and my doc and I laughed about it. Isn't he sweet!!!!

[mom4cem]

I don't think that I could anything more to whatever has been said, all the replies are so full of support and ideas they are great. I am so medication resistant, I know that I feel lousy partly because I am so resitant to try any new meds. I am really hesitant,(that is putting it mildly) about trying lexapro. I tried zoloft once and it was horrible for me, felt like I was climbing the walls, worse than what I felt without it. So I just sit with the unopened sample box and unfilled RX and debate back and forth should I or shouldn't I. I worry about the side effects and then I worry about never being able to get off of it,,,,ever.

Don't give up, hang in there. After reading how many here hung in there and it did not give up with the meds, I think that has given me the extra push to try! Sending you tons of support your way

[Jenn202]

I know how hard ti can be. I have had my share of days like your described.

I agree not to close the doors on the meds either. There are so many different ones, and you might tolerate one of them. Unfortunately with us we have to do many trial and errors before we find something that works.

The hardest thing with chronic illness is not feeling we are validated by the people we love.

I was wondering: would your husband be willing to go to a Dr appt with you? Sometimes this helps so much b.c it is such a complex thing to grasp, and a Dr can better express it.

Or would he ever be open to attending a counceling session with you? Mu husband and I started this about a year ago.... It really helps b/c a counselor is great at understanding and explaining the emotional side of a chronic illness.

Feel better..... And please take care of yourself

[Roselover]

Nina and others,

May I be presumptious and ask a question for Dayna? Acutally it's a question I have been struggling with, but I'm guessing as she reads your posts she might ask the same thing...

I know an SSRI might help me a lot. But how do you know which one to try? It seems like many people talk about one working for one person and another working for another person. I feel like I am looking at a selection of meds that may help me in the end, but will cause lots of nausea and symptoms to begin with and I wonder, but which one will really work? What if I start with one that isn't for me and I go through all that for nothing. Or five times for nothing?

You all had such good advice both on the SSRI's and on other aspects of this. I just thought you could give some encouragement in this area too.

Thank you soooooooo much!!!

~Roselover

[corina]

Roselover (and Dayna),

I told my doctor I wanted to try an SSRI and let him decide which one. If it wouldn't work I would try another one, and another one and so on. . . . I mostly use an SSRI for my hyperreactions. My doctor chose seroxat (20 mg at first, once a day and now I'm taking 30 mg a day). He made his choice based upon the side effects. I had a lot of nausea (as I had from mestinon, especially in the beginning) and I'm taking something for that too. So far I can take it, very much nausea at days, and no nausea at other days.

Just make good agreements with your doctor and go for it. Don't give up quickly, we're POTSy's we don't quit! You never know how it might help you . . .

Best of luck,

Corina

[MomtoGiuliana]

I agree with corina 100%.

Katherine

[DSM3KIDZ]

Thank You everyone for your advise. I went to my mothers and took a little mini vacation there to try to get a grip and sort things out. I did alot of talking with my mom and step-dad and just letting all my emotions out helped alot. They, along with my husband are at a point where they feel helpless. They physically can help with the kids and cleaning and stuff but they are sad for me and how miserable I've been this year.

I still feel a sadness in my heart. I think it's just a process I need to go through because I haven't had any good days all month so I get real discouraged about having hope for improvement. Basically when I physically feel good I emotionally feel good and vise-vera. I have to learn to roll with the punches better.

I'm going to investigate SSRI's a little more but that is definitely my next step. I'm sure I'll just retry Lexapro. When I don't know. Everyone here gives my courage to stick it out and maybe it will help me cope better with my "rollercoaster life".

My husband is going to go to counseling, he's frustrated at the illness and not me. (Totally understand) This illness compromises his dreams to and sometimes because he's healthy I forget that.

Thanks again, without all of you I'd be lost.

P.S. I just wanted to say I'm proud of myself today I went to an event with my daughter and her school friends and I made it through. I was going to miss it because I was afraid I would get sick but I pushed myself and had a good time. I was sick but I just explained myself too the other moms and everthing went well.

[ethansmom]

I just wanted to say that I completely understand. I'm glad you have been able to work out a few details since your original post- and talking to our loved ones about this is the key to successful relationships. So is listening to them- as we know, they go through a lot too! I think it's wonderful that your husband is willing ot go to counseling. My boyfriend and I have been a couple for almost 6 years, nearly 4 of which I've had POTS. It has caused a tremendous amount of stress and tension between us and we have to work at things every day. He is an extremely active person, and we used to do so much together. He was considering getting married that year and then I got sick before he had the chance to ask- we still aren't married now because things have been so hard for us and we keep wiating for them to be like they used to- a realization we both came to recently that may never happen For me personally, defining new norms for us has helped me cope, to come to terms with the fact that I may feel better than I did at first, but that I am never going to be that same person again.

Sadness in your heart is normal- but hold on to hope too, because many people lead full and healthy lives on top of their dysautonomia. And statistically, it tends to improve with time for many people. THis is something to look forward to!

I love to scrapbook also- it combes my three greatest loves (my family, photography, and journaling). I just wanted to see if maybe you had considered making a POTS scrapbook to help get some of your feelings on paper- just a mini album that details your journey and will hopefully end one day with a success story on the last page! It can be very healing to do things like this I consider my scrapbook to be a journal of all my thoughts and feelings with pictures added in- so when I pass away my children will know how much they were loved, that's for sure!!!

Good luck to you- thank you for coming here to vent!!

[MightyMouse]

I don't think there is a hard and fast answer regarding the SSRI that might be your best first choice. I let Dr. Grubb choose for me. I had already tried some others in the past before I know my formal diagnosis (prozac, and also some non-SSRIs like welbutrin--neither helped me, so I was reluctant to try again).

Dr. Grubb picked Celexa because his opinion was it was even more "selective" than the other selective serotinin reuptake inhibitors (SSRI). As for Lexapro, he says that it is "super selective". I made the promise to stick with it for a month before choosing to stop or change.

Corina, that cracks me up that you crushed all the pills. That sounds so much more theraputic than my flushing them down the loo.

Nina