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I don't think I can go on!!!!!


bamagirl
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I am so sorry for all the whining but I feel like my life is over!! For the past 2 yrs I have been bedriddden, unable to do anything except lay in bed. I am having daily adrenaline surges that make my bp shoot up to 167/100 and my pulse 210. Then afterwards I have migraines, nausea and horrible fatigue. I am also so tired from the low bp and hr in between these surges that I am useless!! My body hurts all over from the stinging nerve hypersensitivity. I have been drinking 72 oz of water everyday and eating so much salt but nothing is helping!! I also have these involuntary limb jerks and audio hallucinations with sleep paralysis at night so sleeping is miserable also. My eyes have also started watering constantly and I discovered that is also a neurological problem as well. I have been dealing with this for 5 years and I am worse now than I have ever been in my life!!. The problem is, everyone is telling me it will get better just be patient but I am NOT getting better. It is all I can do not to find something in the cubby to swallow and end it. Any one out there who can give some advice I really need it now!!!

thanks everyone,

bamagirl

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Hi,

I was bedridden for 2 years, fainting every time I stood up (x10 per day) while doctors thought I was pretending.

Then I went to see Dr Grubb and Dr Goldstein who diagnosed me and gave me some meds.

My life is better now because I can watch TV and go out (for an hour or 2) every second day.

I am still looking and hoping for the magical pill. I believe that one day I will find it.

My disorder is genetic and I have no hope for a cure but I hope for a big improvement in my quality of life.

I only started to be tested 6 months ago (besides NIH) and I am on a round of tests. It's very exhausting both physically and mentally but I want to find what I have.

You will have better days.

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Bamagirl,

I am so sorry to hear that you're feeling so awful. I don't know all the details of your situation..but please don't do anything foolish. Talk to a doctor or family member right away.

Are you currently on any meds?

Do you have a doctor or a specialist you can see to talk about trying new meds or getting some further testing done?

If you live in Alabama (I'm assuming you do by your user name), there is a Dysautonomia clinic in Birmingham. There is also a Dr. Sawyer who specializes in POTS and used to work and that clinic, but she has branched out on her own.

Do you have any friends or family that can help care for you and offer support? Even little things like bring you some funny movies to watch or just be there to listen? Have you tried listening to calming music or meditation CDS? These might help calm your ANS.

It sounds like you might benefit from seeing a doctor. I know when you can't sleep it makes everything much worse. It's like your body is just fried and tired and life is not enjoyable. I've been there and I know how awful it is.

PLEASE do seek some help from a doctor, friends or family. We are always here for you on DINET, but it sounds like you need more than just cyber hugs! <_< You can get through this. I'll be keeping you in my prayers. Let me know if you need any info on the clinic or Dr. Sawyer.

Gena

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Bamagirl - please call on a friend, family member, religious leader or counselor to help you through this time. I can't imagine how difficult it is but I do remember when my husband went through a similar period (fortunately it only lasted 4 months) it was really scary for us. We were able to seek help and we did or I am sure things would be different today. So please, you need someone close by - you need to pull out all the stops right now and find someone to lean on. Its my Christmas wish that you find some relief.

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Bamagirl, when I read your post I cried for you. I wish that I could just reach through this computer and give you a big hug, just to let you know that someone cares what you are going through. I agree with all of the other posts, you need to reach out to someone. Dont lay there alone, there has got to be someone who can be there for you. If all you can do is to talk to someone on the phone, that will help a little bit. I too have feelings of ending it all at times, but then I look at my family, and think of what it will do to them. Also I look at my Grandsons,and think oh my God if I do this it will give them an option when things go bad. I have to fight those feelings of doom all of the time. I have a great support system with my family and my therapist. Even though she is on Holiday leave, she told me that if I needed her, she was only a phone call away. Hang in there girl. Call your doctor and tell him that you have got to get some relief of some kind, even if all he can do is to give you something to help you sleep. I wish that I could take all of your pain away, but all I can do is to let you know that I am here, and I understand. My prayers are with you sugar, hang in there. Vanessa

I am so sorry for all the whining but I feel like my life is over!! For the past 2 yrs I have been bedriddden, unable to do anything except lay in bed. I am having daily adrenaline surges that make my bp shoot up to 167/100 and my pulse 210. Then afterwards I have migraines, nausea and horrible fatigue. I am also so tired from the low bp and hr in between these surges that I am useless!! My body hurts all over from the stinging nerve hypersensitivity. I have been drinking 72 oz of water everyday and eating so much salt but nothing is helping!! I also have these involuntary limb jerks and audio hallucinations with sleep paralysis at night so sleeping is miserable also. My eyes have also started watering constantly and I discovered that is also a neurological problem as well. I have been dealing with this for 5 years and I am worse now than I have ever been in my life!!. The problem is, everyone is telling me it will get better just be patient but I am NOT getting better. It is all I can do not to find something in the cubby to swallow and end it. Any one out there who can give some advice I really need it now!!!

thanks everyone,

bamagirl

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I'm really sorry you are going through this and wish I could help. I spend almost all my time reclined or semi reclined now too. My hubs is working himself to death to keep up with bills and then is coming home to do everything here. I can barely post, because I can only sit up for a few minutes at a time.

I can't help you feel better, but I can assure you, you are not alone. You need to call someone now! If you are not in therapy, you need to be, to help you better cope with this. Even clergy, or lay clergy who can visit and support you.

This is a very hard time of year for a lot of people, even more so when you are so sick. It's like everything else, one day at a time. I'm really sorry I can't make you feel better.......morgan

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Of course your situation is frustrating and so difficult. I have been there. I wonder if I would have gotten better without the care of a specialist. Please try to see a doctor with expertise in your condition. Have you been diagnosed with POTS or dysautonomia?

An electrophysiolgist in your area might be a good place to start. If you are not on meds, it would be worth it to try, if a specialist recommends it.

The problem with being bedridden is that it deconditions you and that contributes to worsening symptoms. If your doctor says it is ok, it would really help you to start very slowly on an exercise regime--even if it is just 2-5 minutes a day of exercise in a reclined position, as a start.

Take care,

Katherine

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I'm sorry to hear you're so down.

I don't know exactly how you feel because I've always been forced to go to school...even though I would faint most of the day.

If I were you, I would go to the ER and be admitted into the hospital until they can put you on some med that will make you feel better!!! If this were me, I would go to MCO and ask Dr.Grubb to be called to the ER to deal with the situation.

Good luck!

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(((hugs))))) to you. Please don't give up!!!! I go down to the Ala. clinic when I can, usually 1x a year. It is quite a long trip for me from NY but that is the only place that I have found that has taken me seriously. I do not suffer quite as bad as most on here but to me what I do go through has taken its toll. If you can call them they can offer you some good support. If you can get there, it's a start. They have someone there to talk to also outside of the cardiologist/physicians. I loved Dr. Sawyer, saw her from my first visit until she left the practice. She does practice in the same building but solo.

I wish I could give you a great big hug but the best I can do is a cyber hug. Please pm me anytime day or night.

Are you under anyones care right now? Have someone to talk to?

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bamagirl,

i am very sorry that you are feeling so bad. i know what you mean (as lots of us do) and how you feel. please try to hold on and (like others have said before) try to get help or at least someone to tlk to. know that we are here for you and that we understand how you feel. morgan is right, this time of year is extra difficult for us, but i am sure that together we can hold on!!!!!

corina

katherine, if you're reading, can you explain me what an electrophysiologist can do for us?

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Bamagirl

I know your feelings of despair myself and have been semi house/bed bound for years and hve worsened sinc going on disability in 1990.

Like Morgan, I would STRONGLY SUGGEST counseling. It won't help your illness but it will help your coping skills and it sounds like you are DEFINITELY at your wits end.

. i find this holiday the most depressing one of my life, and if it wasn't for having to talk to myself and change the thought patterns between my ears, I would be despondent constantly. My therapist is there if I need her.

Please be kind to youself and know that even though some of us never get better, there are ways to learn to cope. I hope you find a good therapist as that is key.

Sophia

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Guest Belinda

Bama-I don;t know if you have read any of my stories in the past but I am fairly new to the forum and to POTS.. for a year I have been flighting to get diagnoses of some kind. I have been treated like I was crazy

and to be honest some times it made me very and I mean very depressed not that I am trying to say anything on this.\\

I jusst wanted you to know that we and most importantly I am here for you girl. There is only so much we can do but know that you aren't alone and that you will get through this.

Thoughts and prayers do go along way many of the stories on this forum are testimony.

I f I was close enough I would give you the big hug you deserve and need for putting up with the physical problems going on with you.

And yes I too am hoping that you have someone to relieve even a teensy bit of the burden you are carrying right now.

Please know that my thoughts and prayers are with you. Belinda

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Everyone here on the board has given you excellent advice. I agree with everything that has been posted. I wish there was something I could do or say to take away the pain and suffering people here have been going through. I know the holidays are the worst for me, and alot of the times I get upset over the little things I can't do anymore. I hope you find a doctor along with a treatment that helps you. No matter what we are always here for you on the forum, so don't ever feel alone.... <_< I hope by the time you get this you are feeling better!

Jacquie

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i hope and pray that you get some relief soon, and i really hope you have someone close by to share your feelings with, i know exactly how you feel, worrying because i am getting worse too, and feel so out of control, but i thank God i have loving parents who are there for me, i hope that you have some support during this terrible time, wish we could personally send hugs!!

radha

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