POTS is getting me down!

[AJVDK]

Well today has been one of those days that you ask your self why am I still fighting this. I am just realing down, and tried am being stuck in my house. I am sure many of you know the feeling. Is it wrong to want more, is it wrong to just want to feel better. I am so tired of trying meds that don't work. Tried of the chest pain, and dizzyness, and being tried all the time. I keep trying to tell myself that its got to get better, but it just gets worse.

This weekend my son got sick, and I feel so bad as he needs his mom and I am just so tired. I would do his breathing treatments and then go back to sleep, wake up and do another, this is how my weekend went. My b/p is gotten so low it will not even read anymore on my machine. I am hoping it will come back it up soon. I am beat I don't even want to waste my time going to the doctor right now. It takes so much energy to go to the doctor. I always feel like some of the nurse think I am just Lazy, or get tired of seeing me. I feel dumb also going now as I am on my oxygen all the time, as I feel so bad. I hate getting the looks for people. It the same looks you get when you pull into a handycap space at a store and people look at you like you are so young, the way are you using that space look. Maybe its in my head but I am just tried of it all. Sorry to be so depressing I am not trying to be I am just venting.

I am hoping that ine day I will wake up and thing will be better. I am hoping that I can go back to work one day. I am hoping I can be a real mom one day. They thing that scares me the most it the what if. What if I never get better. What if this is it???

If anyone was any ideas of new treatments for POTS, NCS or the low blood volume and rapid bloodflow please let me know. Or anything that help for you. I am looking for just about anything now. On the Web site the things that help- I have almost tired everything but the IV Fliuds. No doctor around here wants to due it, I am not sure if it would help or noe I thing I am just grasping at anything.

Just looking for HOPE!

Amy

[shannon]

Amy,

I wish I knew exactly what to say right now...I just feel like I can't find the right words. The truth is, you have a right to feel frustrated right now. You are going through a lot ---physically and emotionally I''m sure.

I think that POTS is a tough illness to live with in the social world. You were talking about how you worry about what people think of you when you use a handicapped spot. And, you know, I find myself having similar thoughts when I do things like use an elevator at school (where usually only people in wheelchairs use it). I feel as though when I walk off of the elevator and people see that I'm not limping, they'll think I'm lazy. Maybe we need to stop thinking so much about what other people think....i don't know!! It is tough. The point is.... we're sick(at least for now), and we have the right to take care of ourselves.

Sending you hugs!!

Take Care

[Jacquie802]

Hi Amy, I am having the same day as you right now...Wish I had some magical words and a cure for all us!

Edited January 31, 2006 by Jacquie802

[dawn]

Amy,

I know exactly how you are feeling. I made another appointment with my neurologist today. My husband said "Why?" I said just so I can tell him how miserable I am.

My BP has been running 80's/50's for days and I feel like crap. I don't sleep well. Feel fatigued and anxious at the same time. I pray alot. I wake up during the night and automatically start to pray. It has become habit. I just want to remind God that I am here and suffering and I ask him to show me mercy.

I know how hard it is. I wish I could tell you of some wonderful treatment that has helped. I have tried every med except mestinon (my sodium is too low).

Try to keep a good attitude, I know how hard it is.

When I'm feeling really blue, I watch a comedy (40 year old virgin) this weekend. It is a little escape.

Hang in there.

Hugs

Dawn

[AJVDK]

Thanks for the replys. I been trying to sleep for the last two hours and could not. It was nice to get on line and know you understand how I am feeling. I only hope that thing will get beter. I am going to call the doctor in the morning and suck it up and get an appointment. At leaset they will know I am not getting any better and see what happens. Again thank you!

Amy

[ramakentesh]

I hope I can cheer you guys up.

Try licorice - it has helped me immensly. DHE is also a similar agent to midodrine but is better tolerated.

In terms of a cure - well the Baker Institute in Melbourne, Australia has just received a large grant to study POTS intensily for the next five years. This was because of their original contentions regarding the cause of POTS. They aim to prove that POTS is caused by impaired Norepinephrine reuptake - either from a hypermethylated NET (Norepinephrine transporter) gene promoter (which 14 POTS patients out if 14 tested exhibited) or from oversensitivity to normal NET proteins in Nerves.

The first test being conducted is looking at the actual nerves in the hands to see whether there is indeed a low amount of NET protein in the nerves or whether it is normal - demonstrating impaired sensitivity.

Previous tests have demonstrated using an MIBG scan that 4 POTS patients had VERY low norepinephrine reuptake in the heart - this apparently demonstrates that these patients (I was one) had impaired NET function.

There are drugs that are known to inhibit NET protein function and these created short-term POTS symtposm in normal patients.

There are also proteins that may be able to demythelate a gene such as te NET gene if it is turned off.

So who knows - in the not too distant future better treatments might be available.

[Guest tearose]

Hi Amy, venting is good. Please never think you're alone and as you can see from those who had the energy to type...you have others who know exactly what you are going through! We have to constantly rekindle our hope though! Hope is what keeps me putting one foot in front of the other. Please keep up hope!

As for what works...no magic formula yet and all of us have such different kinds of dysautonomia and different bodies with different added special challenges...just keep trying new things and approaches. Even though you may have tried something in the past with poor success, it may work if you try it again now.

I tend to go back to basics and do the gentle leg exercises, increase water and electrolytes and increase rest and compression. These bad spells pass will subside for me just enough to manage again.

As far as the looks we get from people when we need an accomodation, there are some good ideas in the archive posts.

For me,..there are days I feel sensitive and I have to just ignore the looks. I have also on my "don't mess with me days" glared back and just hoped they would say something so I could snap back with some clever comment! The non-enlightened doctors and small minded people will always be a challenge. Don't let them get to you!

Hope you woke up today and did feel a bit more hopeful!

warm regards, tearose

[michiganjan]

[ I keep trying to tell myself that its got to get better, but it just gets worse. ]

One thing about POTS is that it fluctuates. So you may bad now, but you can still get better. I am happy that you are going to the doctor to press the issue. My POTS was really bad in my late 30s and then, all by itself, it got better enough that I did not need meds and could function almost normally for a few years.

[This weekend my son got sick, and I feel so bad as he needs his mom and I am just so tired. I would do his breathing treatments and then go back to sleep, wake up and do another, this is how my weekend went. ]

Being a Mom is so demanding. Managing to do the job in spite of POTS/dysautonomia is amazing. I am now 58 but I raised two children and I had POTS all the way. It was terribly hard at times, but I made it through. You will, too.

[My b/p is gotten so low it will not even read anymore on my machine. I am hoping it will come back it up soon.]

If the current program isn't working to bring that blood pressure up, I would keep going back to the doctor until I got some results. If the current doctor cannot help, ask him who can.

[They thing that scares me the most it the what if. What if I never get better. What if this is it???]

Amy, this is NOT it! As per Ramektesh's message, finally, there are good people who are working on it and they are moving in the right direction. Help is truly on the way!

[i have almost tired everything but the IV Fliuds. ]

I have a good friend with POTS. When she gets bad, she gets a saline IV and it does help her get up and get going again. You could ask your doctor to explain his/her reasons for not trying it with you, and ask again to try it in the office. My friend carries a letter with her written by her doctor and she has gone in to emergency rooms for saline IV when she needs to and they have done it for her.

The good thing about venting is that it gets all those pent-up awful feelings out and allows us to begin again.

Hugs,

[DSM3KIDZ]

Hang in there...I know this is tuff. I completely understand what you are going through. I'm pretty discouraged myself today. My husband is gone and I'm trying to keep up with my 3 kids (7,4 &23mo.) and pick up the disasterous house while having to sit down every 5 minutes. I feel sick to my head and stomach everytime I'm up too long or do anything physical.

It does suck but try not to look to far into the future. Take it one day at a time. Somedays I even take it minute by minute.

I read the people who posted to you and they gave you great advise and alot of encouragement that maybe the future will be brighter for us with autonomic dysfunction once the research gets better.

As for what people think. I struggled with this for the past year and 1/2 and am finally at a point where I can say "who cares". If they don't get it than they really are not that important enough for you to be bothered by their looks or words. The way I see it is I'm a probally in a happier place than most of my peers even though I'm suffering. Don't get me wrong, I hate suffering BUT I get the chance to enjoy the things that really matter in my life and take nothing for granted, where they might not know suffering so might take the simple wonderful things for granted. And never in their whole lives experiene the kind of joy I do when I'm having a good day.

Sorry for all the rambling just remember your not alone in this.........you have all of our support and I hope things will get better soon.......for all if us.

Hang in there and remember get through one day at a time and don't worry about the future the unknown will only add extra stress to your alresdy stressed day.

Dayna

[Poohbear]

Amy,

I hope you are feeling a bit better by the time you read this. I wish I had the answers for you but I don't; I still wanted to offer my support to you though.

This illness can be so difficult to deal with sometimes. I find I have days where I'm "ok", days where I'm feeling a bit more like my "old self" and days like you are having where everything feels like an uphill battle and you feel a bit hopeless and very weary from the journey!

What you are going through is normal given the situation you are in. Also, when we are feeling down and low about our situation then it seems harder to fight all the criticism that both we and others place on us. Try to be gentle with yourself. I'm sure you are a good Mom and it won't help to beat yourself up over what you can't do. Do you have anyone around you that you can ask for help from? Someone maybe to help you take care of your son for an hour or two at a time to give you a break?

Some days are sad and frustrating. On days like that I try different things to try to get my mind off of reality for a bit. Maybe you can try watching a movie or reading a book, coloring, putting together a puzzle, organizing photo's...some type of thing that will help you just "escape" for a little bit that you enjoy. On days where my mind just won't let me escape then I try to turn it into a day of "outlet" (because obviously at that point your brain/body is trying to tell you it needs to vent in some type of way) ...this may include doing a collage of how I'm feeling or journaling, painting or some other form of expression.

I know it can be so scary when you look ahead into your future. I'm still grappeling with that one myself....how to live in the present, plan for the future without being overwhelmed by it and how do you make realistic plans when you don't know what your future will look like? At the moment, the only thing I know is you focus on each day and you try not to make plans for more than a year ahead at a time because to do anymore is overwhelming and too difficult.

Hang in there and do know that you are not alone!!

[Guest Belinda]

Sending humongous HUGS your way..I can correlate with your feelings of frustration..got two sons of my own !!!

Keep your head up and who cares what others think of the oxygen..just stick oyur tongue out at them!

Belinda

[AJVDK]

Well I got an apointment with my cardio on Feb 13th. So I am going to make the 2 hour drive once more and see if there is anything else we can try, do...... I am hoping for the best! Well today things just still are not getting ahole lot better, but I am hanging on to hope. I know it what I need to do! I am hoping that things are going to get better. I am going to ask about the IV fluids and see if they ill finally do them or not! We will see what happens and I will let you all know!

Again I wanted to thank you all for you relpys it nice to know I have support.

Amy