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Not as strong as I thought


corina
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Well, here I am. Always thinking I'm strong and very positive I found out that you can't be positive all the time. My neuro prescribed me new meds (in getting me out of my wheelchair) and that's where it went wrong. I've been in bed for a week (which is very good for your muscles :ph34r: ) struggled out of it again and just feeling terrible. Got back to my old meds because I have to get up since my husband is having a knee surgery this week. There has to be someone for the kids as well! Don't like to go out (my physical therapist asked me to take me out but I didn't think she had enough time), I think I'm feeling very depressed. There are so many questions and I don't think my neuro can answer them. In fact I'm afraid he isn't the best in dysautonomia but whereelse should I go? Last time I saw him he said he really liked my wheelchair because it's very light. So I answered: yeah I'm very lucky! I know he didn't mean to upset me but since I'm getting worse every month there are times I can't take it anymore and I feel there is no one to talk to except for my physical therapist (who I really love for everything she does for me) and the people on this forum. Oh there is one question I would really like to ask: one of my most striking symptoms is the terrible yawning. I haven't seen anyone mentioning this. The only time I came across this was when reading about MSA. Is this a common POTS-thing as well? My neuro couldn't answer this one. I'm really sorry to have bothered you :blink:

Corina

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Yes, I yawn way too much. But it goes in cycles. When I'm more symptomatic, this can be a constant nuisance - sometimes I yawn just about every minute! Other times it's not a problem at all.

POTS is not my main condition, so I don't think it's specifically related to that - but it is related to the dysautonomia.

Dys has screwed up my memory so badly that I can't help you with the why of it, but at one time I had read about yawning and a correlation with dys, and it made a lot of sense. If I run across that info, I'll post it.

The yawning is certainly frustrating and annoying, but I'll take it any time over any of the other symptoms. :ph34r:

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Hi Corina,

I am truly sorry to hear that you are not doing very well. I don't blame you one bit for feeling the way you do! You have every right. I have read your posts before, and I can tell that you are a very genuine, sweet, caring person. Your previous posts were so uplifting, and I am sorry that you are so down right now. I think we all go through times where we feel like we just can't take it anymore. It is extremely difficult when there are no definite answers or cures, and not many people who understand this. I believe in my heart, and pray to God everyday, that someday we will not have to post here anymore about what medications to try because they "sort of" help, but that we will be able to say, "there is a cure, and here it is." I pray that in the mean time, you will not give up hope.

It must be very frustrating not having a network of doctors in your country who understand this disorder. I have not yet found one near me to go to, and that frustrates me a lot. I feel at times like doctors don't take me serious because they don't understand my problems. I will keep you in my prayers, and I hope you don't give up hope. I pray you have a better day tomorrow. God bless you,

Cathy

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I heard a doc mention the yawning with POTS in a lecture....can't remember which doc it was, but yes...it does happen with POTS.

I'm sorry to hear you aren't doing well. You are so right, you can't be positive all the time. We're here for you in the good times, and we're here for you in the bad times too. Know that there are others in this world who understand what you are going through and who who are here to see you through.

Michelle

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I've always yawned lots and never connected it to POTS--Michelle, if you ever remember the doc and what was said, i'd be interested.

Nina :)

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My cardiologist told me that yawning is a symptom of dysautonomia. It is nothing to worry about, it just means you are not oxygenating because you are either hyperventilating or just because. He told me to take slow, counted breaths when this happens. Thus far, this suggestion has not worked. I have times when I yawn every few seconds for several hours straight. It drives me nuts and is a little embarassing. It is not a big deal though. I have POTS and NCS and have this symptom.

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Thanks for all your replies. You know it's not just the yawning but it's the awful feeling I get when the yawning starts. I know then to stop my "activities" because it's getting out of hand, but it sometimes starts even when I go walk to my kitchen (which is for about 5 to 7 meters). I think the thing that scared me was when I saw this as one of the symptoms of MSA. Since I'm getting worse all the time (and that's going on for 4 years now) I don't know what to do anymore. The changing of meds my neuro wants me to (and I know he only wants to help me) is too much at this moment as well because everything I tried so far didn't work or didn't work enough. I didn't try the SSRI's yet as I read in a few posts (i think my neuro doesn't know this could be a help) so maybe this is the right moment to talk this over. What also bothers me very much is to not be able to help people. Like my sister (who I love very, very much and who's always there to help me). She's moving to her new house and I can't help her pack or even write her removalcarts. My mother in law was in hospital and now needs lots of help but all I can do is call her and ask how she's doing. My husband is going in hospital this week to have knee-surgery and we don't know howlong his recovery will take. All these things are frustrating me very much. Again I didn't mean to bother you with my problems but I think you're the only ones who really understand the things we're all going through. And knowing that and your replies are helping me VERY VERY VERY much.

Corina

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Hi Corina,

I definitely think the SSRIs would be something to try. They help in so many ways, including your mood. Just keep in mind, that initially you have to increase the dose until you reach an optimal level, and sometimes you may feel worse before you feel better. Don't give up though, it is worth it. Also, you may have to try more than one to find which works best for you. (Least or no side effects, etc...) Everyone reacts differently.

I know right now this probably seems overwhelming. Just try to take it one day at a time though. Maybe if people can let you know what SSRI works best for them, we can see if there is one that seems to work for most people. I really liked Celexa.

Please let me know how you are doing. Also, right now, you NEED to focus on getting better, not worrying about what you can't do for others. You may not be able to physically help others, but your heart is in the right place and I hope they see that.

One more thing, please don't ever feel like you are bothering anyone here with your problems. We need to reach out to others when we are in need, not suffer in silence. God bless you,

Cathy

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Corina, I'm on an SSRI called Lexapro, which is relative of Celexa. I found it quite helpful with regulation of my gastric functions.

This disorder is full of ups and downs. During the downs, I often find myself fighting the thought that it might not get better this time around...and during the ups, I find myself fighting the worry that it's going to end any minute. It's also frustrating when my body doesn't do the things my brain really wants to do or thinks I can do. I'm always joking about how my life would be perfect if my body just played along. I'm really impatient with myself--weird, but I'm WAY more patient with the rest of the world...just not with me.

I guess the only thing I can say is try to be patient with yourself (I'll try to take my own advice too!!!)

Nina :)

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Thanks for your suggestions. I think I'm doing a bit better today. I could take a shower this morning and get dressed without falling apart so that's very good. You're right about the patience-thing you mentioned Nina. I'm patient whith anyone around and even with myself most of the times. Although I'm very slow I'm proud of the things I do in my own slow tempo (at least nowadays).

Cathy, thanks for your kind words. I know your right about taking one day at a time, I think that's the only way to survive the really bad days. I will see my neuro in a few weeks and I will definately talk the SSRI's over. Thanks again for the suggestions.

Maybe I can ask someone to take me out today. I would like to go to the library (like to read Jane Smiley's One thousand acres) or if no one can make it I could go painting. I like to paint in water colours (maybe I should give it some tears for the special effects, it might work both ways :) )

Thank you all for helping me out

Corina

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