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parkersmom

What is our treatment plan????

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I have recently returned from a trip to Mayo Clinic in Jacksonville Fl. I was sure they would have some lightbulb moment and find the real source of my grief and surley I would not be left with this mystery diagnosis of POTS. Well in Fairytale land that might have happened, but not here in my world. All of the test showed I have a clear case of POTS. It is so hard to understand how something could cause such mayhem in your body and yet the vast majority of the medical field is completely uneducated about this syndrome. I have often said I would rather be missing an arm so that the cause of my disability would be obvious and I would not have to spend half of my life defending myself against personal attacks. It seems there are treatments options for everything from hangnails to brain tumors, but somehow we fall by the wayside. It is nice to have a place where other people can help you feel that you are not crazy. This website it like finding that little place where every body knows your name, but here everybody knows your pain. Thanks for listening.

Jamie

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Dear Jamie,

I am glad you found this forum. I have had POTS for more than 25 years now. 25 years ago when I didn't know what had hit me, there was no doctor who would take me seriously. I was sent to a psyciatrist!

Today there are actually places you can go to get a diagnosis, which is at least a start. And there are things that you can do to help yourself fare better. If you haven't already done so, there is a section on this site about what helps. There is a link to the information on the main page of DINET. Not everything will apply to you, but you may get some good ideas.

For me, it took many trials of many things to figure out what works best for me. I am still no good at grocery shopping or anything that have to stand up or stand still for. But I have made some improvments and I do have a nice life.

I feel that there will be better treatments coming, now that a few dedicated doctors are working on it.

When you are newly-diagnosed, POTS is very difficult to accept. It is a process that takes time. Just keep hanging out here.

The very best to you

Michigan Jan

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Hi,

Welcome aboard.

You have made a good resume of what we go through.

I am still actively waiting for the magical pill.

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Welcome! I am sorry that you are so down about POTs. I am lucky because I lead a normal life with the help of my meds. It is not the end of the world although it may seem like it now. I hope you get to feeling better soon.

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Hi Jamie -- don't think I've met you before. Welcome! :)

I'm sorry you're having such a rough time :) -- iyou're right, it is difficult to have an illness that's so invisible to the rest of the world. I'm thrilled that you were able to get a clear diagnosis, though. That's a big step forward -- at least now you know what you're fighting against and can work on educating others. Not much of a comfort, I know, but it's the truth! :) DINET is full of great info to help you take care of yourself. When in doubt, we're always here to help out! :huh:

Angela

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Hi, Jamie....welcome to POTSPLACE. I think that, after reading all the numerous posts, there is no single plan that works for all of us or any of us. It frequently is a matter of changing drugs and regimens until you happen across one that seems to work better than others. Keep up your courage and perserverance (spelling). Was the doctor in Jacksonville helpful? What suggestions did he have? He trained under Dr. Low, from what I understand.

Feel better!

Lois

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Hi and welcome to the forum!!

It's sad that you have to be here, but you'll find a great network of folks here.

If you get a chance, tell us a little about yourself: how long you've been sick, what you've tried, and anything else you feel like sharing :) .

I was diagnosed four months ago with POTS, so I'm relatively new in all of this. I know that it's been very difficult adjusting to the lifestyle changes. I used to ride horses and surf, now, on a good day, I can walk to the mailbox and back. Things have gotten a little better for me though. I've found a salt and fluid level that keeps my blood pressure up for most of the time, and my crashes are getting less frequent. I know you'll find things that help too :D .

Take care,

Lauren

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I appreciate all of your comments. I am 24 and have had POTS for about six months. I was formally diagnosed in May 2005. I am usually able to deal with it quite well, but every once and a while I just get overwhelmed. I really think finding this board will help. I just wish there was a way to educate the public better about our syndrome so that we didn't have to feel so alone in our sickness. It would be nice to have the universal understanding other illnesses receive. Ofcourse until that day this little group of us is a real comfort. Thanks again.

Jamie

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Jamie,

I understand where you are coming from, I have been to Mayo in MN, and to the U of Iowa, but got nothing but you have POTS, but nothing eles, I am going to OHio next week, afair I am going to get the same thing, yes you have POTS but theres nothing we can do again, it gets old, and get tired of feeling wore done, and feeling crasy because no one understands!

Hope things get better for you! :rolleyes:

Amy

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I have to say that in some ways my OI/NCS diagnosis was a relief .... its a much nicer box to be stuck in than CFS ... people tend to roll their eyes at you when you mention CFS at least with POTS and POTS like illnesses they tend to have never heard of them so there is less stigma.

That is my positive spin on it. I admit i was hoping to have a more mainstream illness. Sorry you are having a rough time. Are you getting treatment though? like the drs are trying to sort out what works best for your body? I hope they find some ways to help you achieve some normality... if they are not treating you then there is a list of drs on here that everyone tends to rave about :)

As you have mentioned ... at least your not alone on here :rolleyes:

I was not sure if you were asking for a treatment plans? oh well here is mine anyway hehe

My drs aimed to start me out on the least medication as they say other meds can have not so nice side effects like wieght gain and migranes etc so they just put me on florinef 1st ... plus non medicinal treatments, I am going to a hypnotist to help with sleep problems and going to a psychiatrist who specialises in anxiety and depression associated with long term illness (but suprisingly the hypnotism has done WONDERS in the department too much to my suprise). They also sent me to a physio who was lovely yet i cant really afford to do it all at once. I also get massages at least weekly.

I have improved greatly .... yet if i go backwards there are other meds the drs can try (i think people on here take things like betablockers and mestonin .. i dont know much about them though sorry).

I think alot of my recovery has to do with knowing i dont have cancer or some horrible disease ... as previously i always felt there must be something wrong to have me feeling this way, at least now i feel like i have a face of what i am tackling (even if the face is a little shady).

(although when i was first diagnosed with CFS a sepcilaist told me i had hypotention and told me to fix it by walking and getting out of bed early .. 4 years later a local dr gave me florinef which helped MAJORLY and 2 years later new specialists explained to me what OI is and how it could be the whole cause and tailored medication for me. You are right when you say that most drs are clueless ... i wonder if i would have saved years if i had been treated for low BP in the first place instead of just stating "you have it".... drs can **** :( )

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My current medication is working for me better than anything I have tried so far and I have started seeing a nuerologist who says he can help with the nerve and joint pain. I am very excited about that. I have wondered about Yoga. Have any of you ever tried that? My doctors at Mayo mentioned that it might help relieve some of the tension in my muscles. It is a thought I guess. I am considering going to a pshycologist. It seems like a lot of the people on here have and maybe that would help me deal with the chronic illness better. The down side is I don't want to be labled crazy at 24. I am a good mother and wife and certainly not crazy. Ofcourse that is probably just me dealing with my own sterotypes. Wouldn't it be great to just be my old self again!!!

Jamie

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I dont want to be labelled crazy at 22 :blink: There are some psychologists out there who sepcialise in helping people deal with pain/chronic illness .. it makes sense.

I mean lets say someone was abused, they may go see a psychologist to help them deal with the issues it caused and would not nessicaily seen as crazy. People with Chronic illness and pain have a whole heap of stresses and expectations to deal with, you dont have to be crazy to seek help (and they dont only help crazy people).

although crazy is a annoying word ... those people with a mental illness are sick too. I personally think it must be one of the toughest illnesses to deal with.

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Hey there,

I've been seeing a therapist since I've gotten sick. I don't know what I would have done without her. It isn't fair that I burden my family with my doubts and fears, but I can talk to my therapist about these things, and she gives me advice on how to cope with new problems.

You definitely don't need to be mentally ill to benefit from therapy, I feel that seeing someone has kept me from becoming depressed or anxious about my condition and she has helped me put my illness into perspective. If you think you may benefit from talking to an impartial professional, I highly suggest you look into it.

Just thought I'd throw in my two cents. :):blink:

- Lauren

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hi jamie -

i just wanted to add my welcome. i'm 25 so am close to you age-wise, and can definitely relate - as many of us can - to your frustrations. this forum is a great place to connect with people who "get it" & like others here i have also seen a therapist to "vent" at times over the years. it's not a magic fix but has definitely helped at times, & seeing someone doesn't mean that you'll be given a psych diagnosis. personally i think it can be one of the healthiest things to do. but i'll get off my soapbox about that:) i also know how tough it can be to fit it in, find someone who you connect with, etc.....especially in the midst of other appts, trying to keep up with "normal" life in the midst of illness, etc...

most importantly i just wanted to say welcome. i'm sorry you have reason to be here but glad you found the forum.

:blink: melissa

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Hi Jaimie. I deal with chronic pain and have been having what I call breakdowns and shut downs lately. 3 months ago I just found me the most magnifecent councelor (as I like to call them) and it is helping. I have my daughter seeing a councelor, my son and my husband and I are doing couple counceling. I am hoping that this will help us all learn to really deal with our situation at hand. Because it does affect us as a whole!

So we are all working together and now that I have found this forum here with SO many others who share allot of the same things I feel like I have a support group at home now ;-)

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