I need some help

[sdeleon]

My sister has been sick for the last 5 years of her life. She has been to the doctor and emergency rooms countless times and they keep telling her that its all in her mind, nothing is wrong with her but I know my sister and she is physically sick. She has pulsing sensations in her head, neck and chest. Her BP is so out of control. She has been to the doctor countless times and they have changed her medication over and over and it is still not in a healthy range. She gets sick after eating now, she's tired all the time, she faints when she stands too long and she has numbness and tingling in her face and hands. She's miserable and frankly she's lost the will to live. She has seen an allergy doctor, a heart doctor and a psychologist. About a year ago  her heart doctor diagnosed her with Vasovagal syncope. He gave her new blood pressure medicine but she is on no other medications. I feel like she has been misdiagnosed and regardless needs some medicine. I just want to get her help. One of the biggest problems is that she doesn't have insurance, she does have state issued medical assistance but a lot of specialists and doctors don't want to accept this. I have sat and watched her suffer for five years and I can't take it anymore. She's sick and I need to get her some help. Can someone tell me what to do when doctors in my area don't want to help?

[Heiferly]

Is your sister in KY?  If she's on Medicaid, they should cover doctors and hospitals which accept Medicaid in neighboring states, which would include TN.  Which if she's in KY is VERY good news, because TN has one of the nation's only autonomic clinics (there are only a handful in the whole country.  Here's the link to the page about dysautonomia specialists, including the link to the clinic at Vanderbilt in TN:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

If she's on Medicaid in KY, that would be the first place I would call to try to get help.  Depending on how far a drive it is, I know it could be a major hassle to get there, but having access to an actual autonomic clinic could make a HUGE difference for her.  And once they get her properly diagnosed and set up on a treatment plan, that can be maintained through doctors closer to home.  I've had some luck in the past helping people find appropriate local doctors to work in conjunction with the advice of a major autonomic clinic out of town, so if you want some help figuring out how to approach that search, send me a private message and we can discuss that.  (Hover cursor over username then click "send message" to use the private message feature on this site.)

If a major autonomic clinic isn't an option at this point, finding a knowledgeable doctor locally is critical and there are ways to optimize the hunt so you have a good chance of finding a suitable doc for her needs.  As I think was mentioned above, we community leaders have been in a rough spot with our own health lately, but I'm happy to do what I'm able as my health permits.  (I'm much more likely to see a private message in a timely manner than a reply on this thread, so I encourage you to contact me that way if you want to address me in particular for help with this.  Thanks!)  I'll keep you and your sister in my thoughts!

[sdeleon]

I'm so sorry that anybody has to experience this suffering. I don't understand why doctor's don't know much about it. I'm going to get my sister to have her general doctor do some more tests. It's just gotten to the point now to where we don't know what to ask them to test for. This is such a rough process. Thank you for all of your information. I think  when I go down for Christmas I am going to try to do some of those self tests on her Blood pressure so we can tell the doctors our own findings. You're great! And I have to say you're daughters are simply gorgeous!!!

Take care, and I hope you get some relief very soon!

[evo123]

'Can I also say that she is lucky to have such a good brother like you (I am also I have a 'big' brother fighting my corner for me).  I do not know where I would be without mine.'

Sorry - meant to have typed sister!!!!!!!!!

[evo123]

One more thing.....

Regarding her bp increases has she been evaluated for an adrenal growth - have they scanned her adrenal glands?  I have an adrenal growth and I was investigated (partly!!!) for a Pheochromocytoma - it is also a differential diagnosis for POTS - they have similiar symptoms.  This can cause, amongst many symptoms, tachycardia and high BP.  

Below is a link to some info on this as well as a symptoms list:

http://pheochromocytomasupportboard.yuku.com/topic/1553

[evo123]

I understand how your sister feels.  I had 'episodes' for a few years but passed them off as one thing or another but now I am constantly unwell.  I have experienced bad attitudes from medical staff and lack of understanding.  I was in hospital for 2 months from when I first crashed in May.  It is hard and harder still when you cannot recieve the help you need.  I have 3 young children and am finding this fight hard.  My brother and my mum are my lifeline at the moment - I could not manage without them.

Please try and get a copy of her Tilt table results then you can see for yourselves what actually happened to her bp and heart rate.  

I have (they think) Postural Orthostatic Tachycardia Syndrome (POTS) and this is diagnosed by a tilt table test result of an increase in heart rate of 30bpm or to 120bpm when tilted from a laying to standing position.  You could maybe try a 'home' version just to see what is happening.  Ask your sister to lay down flat for a while (15 mins or so) and take her heart rate.  Then ask her to stand up.  Take her hr again.  Take it every 5 mins for about 20 mins or so and see what happens.  If the difference is 30bpm or more, or over 120bpm, then it may be possible that POTS could be involved here.  

POTS is a little known form of dysautonomia and many doctors do not even know it exists.  Many doctors who do know a little about it are usually very limited in info or are themselves misinformed.

As well as having standing tachycardia, it can also come on me whilst sitting or laying.  I am not sure if this is experienced by others with POTS.

If the betablocker she was on did not help try to get your doctor to prescribe her one of the other medications mentioned earlier, they may help her more.  Other important things for her to do are to make sure she has a good water intake - the more the better.  Increase salt intake or ask her doctor to prescribe some salt tablets.  Wear compression hoisery, her doctor can prescribe these or they can be ordered privately - the higher the compression the better ( around 20-30mmhg I think!).  Gatorade - drink plenty of it.  These things will all help with her blood pressure.  As to can pure liqurice (sp).  They are all worth trying to see if they make anything a little easier for her.

Has your sister had a full hormone panel testing done, including cortisol?    Have they checked for addisons disease?  

Please tell her to keep fighting there will be answers out there for her she just needs to meet the right doctor.  I hope she can take comfort in the knowledge that there are others here in her position and willing to try and help, who understand what she is going through.  

Can I also say that she is lucky to have such a good brother like you (I am also I have a 'big' brother fighting my corner for me).  I do not know where I would be without mine.

[sdeleon]

Thank you. I just can't stand to see her suffer anymore and she doesn't want to fight anymore either so I just have to do something..... if I could just get her help enough that she would have episodes like she used to it would be better. She seems to be in an almost constant episode lately. I think she has been sick almost non stop for the last 4 months.

I appreciate your help!

[sdeleon]

Hi, thank you for responding. My sister is having a down period right now and she isn't interested in answering all of my questions but I will tell you what I think I know. Over the years she has had many tests done on her heart, EKG's, heart cath, 2 stress tests, she even had that one done on her neck that determines artery blockage because she keeps complaining of really strong pulsating in her neck, chest and back of the head. All of those tests came out ok. On the tilt test she fainted and I know that they called for the crash cart but she came to before they did anything. I am only assuming that her blood pressure went low but she has a lot of high heart rates and her blood pressure itself on medication has been as high as 220/130 with a heart rate around 125. She has a lot of high heart rates. She can have them while sitting and doing nothing or even while lying down... then there are some days that they are really good or low. Anyway, due to the fainting she has become completely dependent on others because she refuses to drive and she rarely ever leaves her home. Her quality of life is greatly suffering.

The medicine she was prescribed after the tilt test was Atenonol (spelling?) and at one point she was prescribed Wellbutrin (spelling again?) but her medical card wouldn't pay for it and she isn't taking any. She seems to have a very low tolerance to some of these medicines and everything makes her want to sleep, although she sleeps a LOT more than normal with no medicines at all.

She has basically given up. She has no faith in doctors and I can't blame her because they have told her its all in her head and a few of them at the Emergency room have talked very nasty to her telling her that she isn't sick and she's wasting people's time. One doctor even told her that she was raising her own blood pressure to these extremely high elevations because she's depressed all of the time.

Oh, and on her last full blood test they found really high level of C-Reactive Protein but they aren't concerned right now, and I'm not sure if they ever will be.

She's just been through so much and from reading on here I can see that she isn't alone. Its hard to hear of everyone's suffering but good at the same time to know that she isn't alone and somebody somewhere totally understands.

[laurab2818]

Sounds like she may have dysautonomia. The top places are Vanderbilt, Mayo, Cleveland Clinic, and Dr. Blair Grubb (Toledo, OH).   Most drs. are not familiar with how to diagnose or treat.  It is crucial to see a knowledgeable dr.

Hope this helps.  Hang in there.  She is lucky to have you.  It really helps to have a family member, spouse etc who can help get treatment and be a support. It is so hard to be sick and trying to get help on your own.

Laura

[evo123]

I am really sorry to hear of your sisters suffering and the lack of help she is recieving.  You will find many of us on this board have been, or still are, in the same situation.  I cannot offer any advice regarding Insurance and doctors where you live as I am from the UK and our system here is different, but there are many people here who will give you lots of help in that area.

You say she has a diagnosis of Vasovagel Syncope, was this diagnosed through a tilt table test?  What medication is, or has, she taken for this?  Common ones would be Florinef, Midorine, Paroxitine, or a betablocker to try and help with the 'overshoot' that causes bp to drop.

If she had a Tilt Table Test what happened to her heart rate?  

Does she have problems with her heart rate, does she ever experience a fast heart rate?  What happens to her heartrate when she stands?

What tests have been carried out?

Many people who suffer with a form of Dysautonomia are often told they are fine!!! This causes them added stress and suffering.  

I am sorry for asking all the questions but I am just trying to get a bigger picture of what is happening to your sister.  The community leaders on here are great they will help you, but they are not so good themselves so it may take them a little longer to reply here.

Below is a link to the health pages of this community, have a little look on them and see if anything sounds familiar to you and your sister.

http://www.medhelp.org/health_pages/list?cid=196