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fed up.


hayley
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i just thought id post and have a moan.Well i posted a little while ago because i was going in hospital some time for 5 days of tests to see if there is a cause for my pots.anyway i been told theres a five to six month waiting listed. im absolutely gutted.my dad rang up and spoke to the doctor whos trying to bring it forward so hopefully itll be sooner.i pass out 10 times a day everyday and have been for the past 10 months.im pratically bedridden at the moment seem to have got worse.i keep loosing the use of my leg and have a lot of pressure on my back and neck and have lost weight lately.my mum has to wash me and help me get dressed.theres so many things i want to do. Sorry im just really down at the moment im only 20 and i just want to dowhat my friends are doing.thanks for letting me moan .And my shoulder still hurts because i dislocated my collar bone about three weeks ago ive got to see a phsio tomorrow about it. i actually feel guilty for posting because im sure some of you are far worse off than me.Anyway thankyou this forum it

has been a great help to me.

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Hi,

I am sorry you have so long to wait before you get the tests done. I had the same problem in my country. It took 2 years before I got the TTT and I was bedridden for the whole time. What helped me pull through was the hope that when I get tested I will know what I have and get the proper medication.

I was telling doctors that I faint everytime I stand and they could not care less. It was very frustrating. Another thing that helped me is that I have a friend who took care of me and my family was backing me up.

Now I have a diagnosis and medication that work so I am functional at home but I still cannot work.

I think your father has a good idea to put you on a waiting list for any cancellation.

Have you tried any medication so far? Do you think it is possible that your PCP tries you with the most logical choice of medication for POTS (according to your symtoms) while you wait for the tests?

Have you tried high salt, drinking more water and compression socks?

Ernie

Ernie

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hayley, i've actually been rejected by all the major centers here, so no chance of finding any answers. i know you are very frustrated and this is so very hard. i am so sorry you are going through this. i would suggest that if you are bedridden, you try to do some passive exercises, like just leg lifts or something. i am really paying for my inactivity now and think if i had at least done a few simple things it would have at least helped a little. just try to hang on til you are seen and know every here is pulling for you. thank God, it sounds like you have supportive parents. morgan

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Hayley,

I can empathize with you. I have had probblems having to wait several weeks or months for several tests this year. So whenever this happens, I (or my parents) keep calling back the dr's every day or two to check for cancellations. We have actually had pretty good sucess in getting squeezed in early most of the time. There are always cancellations. The receptionists are surprisingly cooperative as long as you're polite, (and even if they get annoyed it doesn't really matter to me as long as I get my appt!) Sometimes you can also speed things up by offering to break the tests up into 2 or more vists, although I am not sure if this is an option in your case. So I encourage you to be persistent and hang in there while you're waiting for the tests. Good luck!

-Rita

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Oh Haley, you sure have been through the wringer. I hope you can hang in there until you can get into the hospital for diagnostic workup. In the mean time, is there anything that helps you at all?

have you tried the non-medication interventions? increased water and salt intake, compression stocking, etc.?

Nina

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Haley,

Just hang on. Most people with your symptoms can be helped with the right combo of meds, once it is more fully understood what kind of mechanisims are at work that are giving you these symptoms.

By the way, how did you dislocate your shoulder?

In addition to hanging on, keep on pressuring anyway you can to get some quality medical attention.

The future will be brighter. . . the waiting is just ****

Michigan Jan

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Waiting to be evaluated when you are sick is the absolute worst. It is so frustrating...but hang in there!! Definitely try to do what the others said- keep your fluids up (and drink electrolyte drinks if you can) as well as salt intake,and compression hose. Keep a positive attitude and rest assured that the time will come when you are able to be seen...I just hope they can get you in earlier. :P:D:):)

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thankyou so much for all ur support im so grateful.im having a bad day today i just keep crying plus i got turned down for disability benefits and i really needed that money.i hurt my shoulder by fainting and falling down the stairs.im on beta blockers at the moment but the cardiologist has upped the dose but there just not helping.the other doctor who specialises in pots hant given me anything hes waiting for me to have the tests. i do wear the compression socks which help abit i try to drink lots of water but i just end up peeing it out every 10 minutes.anyway thankyou again.

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ive had some fantastic news.well my dad kept ringing up the hospital and ive been put on the emercency list so i should be in hospital in november now instead of march time.they also said if there is a cancellation then theyll let me no so it could be sooner.yipee im so happy.oh and another thing they want to do automonic function testing does anyone no what this involves?

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Hayley,

That's great that you'll be able to get in sooner! I hope you can!!

As far as peeing a lot, that is normal but you should still definitely continue to drink a lot of fluids. It's important to keep your body hydrated.

Just a thought, too...has your fainting become worse since you started the beta blocker? Some people have trouble with their blood pressure dropping if they are taking a beta blocker by itself- or in general- which might cause you to pass out more. Sometimes it works better in conjunction with Florinef or Pro-Amatine to help counteract the blood pressure drop.

Good luck to you!!

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Hayley, I know how you feel. I went through a period where I was completely bedridden for over 3 months. I thought I had achieved a great victory the day I managed to get out of bed and walk "all the way" to the living room. I had to give away my goldfish because I was unable to make it to the kitchen to feed them - never mind cleaning the tank! One of my friends had to come to our house twice a week to help me bathe. I couldn't watch TV or listen to the radio because it wore me out and I couldn't read because my eyes would not focus. All I could do is sleep. My husband had to wake me up to eat - and that REALLY wore me out! Gradually I regained my ability to get up and around. I am still a far cry from the workaholic I was but I have it better now. I have been fighting for my disability for over 2 years now - you just have to hang in there and don't give up. Don't worry about whining - all of us here have done it! :) (especially me!)

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Guest Julia59

Haylay,

Have you heard of the drug straterra--(spelling?). It's a stimulant type drug that some POTS patients take---especially those that faint a lot.

I have my issues with my POTS and upper spinal problems, but i'm definately not as bad as many of the others. And I think you have more to deal with then me---so don't feel bad for venting. That is what this discussion forum is for---for us to have a place to go where people understand this relentless disorder----(THANK YOU MICHELLE-----and all the others that keep this website going----NINA for all the loads of medical material you find for us). :unsure::P:D

When we are having a bad day---or a bad night----this website can make the difference and make things a little brighter----keeps me going----keeps my sanity.

I hope the ANS testing you will be going through will help find answers so you can get your life back on track with the proper treatment and medications.

I'll be praying for things to get better----SOON.

Julie :0)

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I don't know if this is it or not. When I was at Vanderbilt they did autonomic testing. They put an automatic BP cuff on me and checked it while I did varius things like: blowing against resistance - that one was blowing through the end of a syringe without a needle on it; another one was measuring my BP while I was having a response t pain - for that one they put my hand in a bowl of icy water. They had a couple of others but I can't remember what they were.

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re: autonomic tests: I had two different breathing tests while lying down--blowing hard into a goofy-looking thing and the other one I can't remember at the moment (taking my blood pressure throughout). Also they did a sweat test which was nothing like the sweat tests others on the forum have had. And the tilt table test is a test of the autonomic nervous system (where you lay flat on a table, strapped on, and they tilt you upright at 70 degree angle and monitor your heart rate and blood pressure.)

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