On The Verge Of Bankruptcy And Homelessness. Need Support.

[****onearth]

Disabled vet, spent nearly 3 years in bed. All of my family and friends abandoned me in my time of need. Money is running out and I have no help. I have been to Stanford University (where I was finally diagnosed after years of people telling me it was all in my head), Mayo Clinic, and seen nearly 50 doctors of all specialities to help treat my problems. Nothing seems to be working.

My family refuses to believe there is a problem. Apparently I am not "praying" enough to make my problems go away. These are the people that gave birth to me. I feel like I have no one on my side and no one to talk to who even tries to understand.

I am bed ridden most of the time. I am at wits end. Drugs seem to make me worse or have no effect at all. I do not know what is going on with my body. All I want is to be independent again and able to work, go to school, have relationships, and get on with life.

What's worse is that my ex-family thinks they did everything they could, when they flat out told me if I kept being sick they were going to admit me to a psych hospital for 'depression'. Give me a break.

Tyler

[Katybug]

Tyler,

You may not see it right now but in time you will find clarity.

Sometimes we can't see the bigger picture because our problems become so oppressive but we are all worth fighting for including you.

[Claired]

Katybug is right. Tyler, there is hope!

Things are bleak now, but there is a right treatment out there for you. There are many dysautonomia and other illness groups online who are extremely supportive. If you ever have specific questions about your illness, feel free to ask them, because no one here will ever judge you.

By the way, depending on your income you may want to see if you qualify for free healthcare, the specifics probably go by state.

Thank you for your service to this country.

[MomtoGiuliana]

Dear ****onearth

Many of us have been where you are, feeling desperate to feel better and have medical solutions. I am glad you found this forum b/c I think you will find support and empathy here, and ideas for finding resources and treatments that will help. There may be other veterans on DINET who can make suggestions for navigating the health care system that should be serving you.

I am sorry it has been so difficult so far to find good treatment.

I also thank you for serving our country.

Take care. We are thinking of you!

[****onearth]

Thank you all for your kind words. By chance, do any of you know any good doctors that have helped you in Illinois? Or even the midwest? A good doctor is hard to find.

I'm so worried that I might end up in jail and then not receive any treatment at all. I go into these fits of rage that are hard to control. I hate being the victim, and most doctors will not take my health (or time) seriously. I am not the kind of person that lets someone walk over me, so when a doctor tells me off I nearly lose it. This gets aggravating after having waited patiently for months for a new appointment, to only get pushed around yet again. I've gotten to the point now where I don't even try to get help anymore because I can just assume that if I make an appointment for, let's say, September (my next appointment in California) it will, yet again, be a complete waste of time. It's like I've lost all motivation, even though I want it so badly. I just don't have the energy to go forward, which beings me to my next point:

I have three questions if you all could be so kind:

1. Has amphetamines/stimulants helped any of you? I was on them for a bit and they really helped me with motivation and energy, but now seem to have a paradoxical reaction to it (they don't work, sedate me, or send me into a hyperadrenergic crisis).

2. Do you know what is causing your pots and how to get tested for its cause besides the regular autonomic testing?

3. How can a doctor give me sodium for increasing blood volume if he/she doesn't know I'm hypovolemic to begin with? There's got to be a test for this. I've had periods of hypertension due to increased sodium intake, so I'm afraid to pretty much listen to anyone other than fellow patients, because doctors really have no clue. Right now I'm med free and feeling very scared, and I'm not one to be scared at all.

Thanks again,

Tyler

[bigtrouble]

I have seen one really bad case of IST (Innapropriate Sinus Tachycardia). The video is on youtube and the girl is bedridden most of the time. Lucky for her, her boyfriend understands the problem.

I was in a similar situation. The tachycardia was very uncomfortable, the heart pounding was extreme. My favorite time was being asleep since it was only then that I didn't feel anything. Going to the emergency was useless and I had to search on my own and self diagnose.
I didn't work for over a year because of all the discomfort.

1. I don't have acces to that plus I think stimulants are bad. Caffeine and chocolates aren't recommended. Chocolates aren't so bad since the theobromine that it contains isn't as strong as caffeine.
2. Not sure what other tests there are.
3. You can also drink a lot of water along with salt intake to keep a good volume. Unfortunately, it causes hypertension. What drug did you take?

[Katybug]

Hi Tyler,

Whether stimulants help or not often depends on a patient's POTS subtype and/or underlying cause.

You didn't mention what tests you've had. We might be able to tell you what other things are out there if you can narrow the field.

The salt can have the same issue as the stimulants. Depending on your particular subtype or underlying cause, it may or may not be the right thing.

Just curious because of some old information I might be able to find....did all this develop as a result of or during your service? There is another veteran that shared some information about a doc that works with patients with Gulf War Syndrome and related illnesses. If you think that doc might be of any help to you, I will try to find that information for you.

Take care,

Katie

[jesse1919]

Blood volume test- Unfortunately it's not a common test. As far as I know the Daxor machine is the only thing that specifically tests this. I was told when I had mine done that there are other older methods, but not as accurate. I think it cost about $2k before insurance. Maybe it's come down in the last few years. Check locations:

http://www.daxor.com/bva-100/facility-locator/

I can't believe there isn't one in Chicago. Or Milwaukee, Madison, Indy, St. Louis... Looks like Mayo Rochester might be the closest. Or the Cleveland Clinic.

[SarahA33]

Hi Tyler,

Welcome to DINET. I'm sorry that you are experiencing such a difficult time right now, there are people here on the forum who understand how hard things can be and you are amongst friends here. The challenges that you have are very real, and trying to have family and friends truly understand what we're going through is a huge topic of discussion on the forum. I've had a great deal of success in the past with chronic illness counseling, it helped me to talk with someone who I felt was not biased or judgmental. Dealing with a chronic condition is exhausting, and it can feel overwhelming at times, but you aren't alone in this. I am thinking of you and wishing you the best. Take care of yourself! Sarah

In an above post you had asked about a doctor in IL or the Midwest, here is a link to DINET's physicians list where you can search by location or specialty: http://www.dinet.org/index.php/physician-list

[Christy_D]

_{Hi Tyler,}

_{There is a really good doctor in St Louis, Dr. Laurence Kinsella. He is at St Claire Hospital in Fenton, MO. He is a neurologist. He is very well versed on dysautonomia. I hope this helps. Don't give up hope, my son was mostly bedridden for over 2 years before we found the right combo of medications and the right doctors that made him functional again.}

_Christy

[gjensen]

Tyler, I can relate with many of your frustrations.

If you ever feel like it could be helpful, you are welcome to PM me.

The members here are very helpful and supportive.

[statesof]

Hey Tyler, I've been to doctors in illinois as well as mayo, for autonomic specialists in illinois there is Dr. Janis Gilden she is an internal medicine doctor who has sees, and I believe has done studies with POTS patients. She was not able to help me but my symptoms were a bit more neurological. She is very thorough and on your first appointment with here it is basically a whole day of testing.

http://www.healthgrades.com/physician/dr-janice-gilden-ylgcm

There is also Dr. Barboi he is a neurologist, he did my first tilt table test indicating that I had POTS and has helped other members on this forum.

http://www.northshore.org/newsroom/press-releases/alexandru-barboi-md-to-lead-the-new-autonomic-laboratory-/

There is also Rush, which has a decent neurology clinic.

[****onearth]

Thank you all for your help. I will look into all of this in the next few days, brain fog is very strong right now.

Last Question:

Does food affect anyone? If I don't eat anything I seem to be okay, but when I eat something my symptoms spiral out of control. I can never tell what triggers it, and have had all sorts of tests for allergies and the like. I have been looking into things like 'leaky gut' and other digestive disorders that could potentially cause my dysautonomia. In fact, in the beginning I was telling my parents and doctors that I was having insane reactions to food, but it fell on deaf ears. Typical gastro workup shows nothing. I almost feel poisoned after I eat. Celiac is also negative.

Could food be causing my problem or is that just a side effect of a shift in blood flow? I swear to god sugar makes me so, so sick, but the heavy things I'm supposed to avoid (meats) are the only thing I can really eat. I almost feel like none of the drugs have worked because food has been the culprit the entire time. SIBO was negative, as was all sorts of tests for pathogenic infections.

Tyler

[Christy_D]

Perhaps also do a little research on MCAS(mast cell activation syndrome). While we kept trying to help my son with his POTS we didn't make much progress until we got to the root cause, MCAS.

[yogini]

Yes, eating makes things much worse for me. Even now I am "well" and have to be careful about eating large meals. Try eating small meals with low carbs and doing some searches on the forum to see what eating habits have worked for others.

It is a lot of time and trial and error, with medications, foods, and finding the right doctor. This condition can best be treated by those that have lots of experience and there are only a handful of them in the country. Most of the doctors out there have no idea how to help us and make things worse - emotionally and physcially. We need a of patience and strength to get through. Take care of yourself and try not to stress out as it will just make your symptoms worse. I hope you feel better soon.

[p8d]

Try Medical college of Wisconsin in Milwaukee, they have a number of dysautonomia specialists or Dr Dotson (neurologist) in Grafton, WI (just north of MKE, Aurora health care). She diagnosed me, has a clinic just for Milwaukee-lots of specialists, all types, PT etc. She worked at Mayo and Med College. Knows her stuff. Has the BEST nurse practitioner who deals with all my problems and coordinates between all my specialists.

[sue1234]

Regarding sugar, what exactly are the hours like after you eat something sweet? I have low blood sugar issues and feel horrid if I eat too much of a sugary thing due to the whacky insulin levels, then a crash into hypoglycemia.

Also regarding sugar in general...if anyone has a tendency at all to get somewhat elevated glucose levels after eating(even not in the full diabetic range), remember that the body compensates for that by trying to dilute it in the bloodstream and eliminate it through the kidneys. So, for us hypovolemia, this may exacerbate our low volume by losing even more fluids.

[ks42]

I have extreme problems with sugar - it can actually send me into the hospital with an adrenergic storm, so I can't have ANY - even natural sweeteners like honey, molasses, etc.

If you're reacting to sugar, you might want to make sure you've had a recent fasting blood glucose test, hemoglobin A1C, and possibly even a glucose tolerance test. You also might want to buy a glucose meter and try checking your blood sugar before and after eating things that trigger you, just to rule out blood sugar problems. Reactive hypoglycemia is an issue with many chronic conditions, which can cause the issues you describe, so testing is important to rule that out.

I myself don't have any blood sugar issues (had all of the above tests to rule that out), but I wasn't surprised to find that sugar was a problem with my POTS. To put it simply, the way we metabolize things that are high in sugar and high glycemic induces a stimulatory response; it revs up your metabolism, raising your heart rate, and excites your nervous system (not good if you already have an overactive sympathetic nervous system, as I - and many POTS patients - do).

Because of my reaction to sugar, I also react to high glycemic foods (foods that turn into sugar quickly in your body). So, I'm on a very specific low glycemic/low carb high protein diet. The diet was recommended to me by two POTS specialists, my GP, a naturopath, and a chinese medicine doc!! It consists primarily of a lot of lean proteins (chicken, turkey, sometimes fish, little to no red meat, sometimes protein supplements such as whey or pea protein), a TON of vegetables, low glycemic fruits, sometimes beans and grains like quinoa, etc. I check the glycemic index of every food I eat, and calculate the total glycemic load of my meals using an app. After awhile, you don't have to look it up anymore, you just know what foods to avoid. For example, I don't eat high glycemic foods like breads, pasta, rice, certain fruits like melons or pineapple, raisins, etc. I also typically avoid processed foods in general, as they can be neuroexcitatory as well.

This diet changed my life. I'm still not out of the woods (or even very well controlled) with my POTS currently, but within about 1-2 months, I had improved my symptoms 30-40% just from diet alone, and had stopped going into the hospital on a weekly basis

However, I know other POTS patients who have improved with a diet opposite of mine (high starch / low fat, vegan or vegetarian) so diet, like all things when it comes to POTS, is really very individual.

[****onearth]

Sorry everyone for not posting for quite some time. I crashed hard. I'm homeless now, and it's not as bad as you'd think. The only problem is I can't cook healthy meals and I'm sure this fast food isn't going to make me any better. The fatigue and brain fog is the worst. I could live in a cardboard box so long as my health improved.

Sugar destroys me as well. I don't know if it's because of the insulin response, or the stimulation sugar provides, but I can't tolerate any carbs at all anymore. I think the comment on the body trying to eliminate the sugar and lowering our already lowered blood volume is spot on.

So I'm trying to figure out what to do. When I made appointments for the doctors you all have listed above, the wait times are long. I'm on cancellation lists but I need answers now. The other problem is that I routinely miss appointments when they do come up, because I'm often too tired drive, function, even call a cab, etc. What I try to do now is fast and not have anything to eat the entire day of the appointment, to make sure I have the best chance of making it.

I honestly can't believe I ever believed in God. This whole "hope and pray thing" is ridiculous when you're faced with reality.

I just wish other people would wake up, and maybe we'd have more doctors and families trying to help us rather than shunning us for "deserving it" even though we did nothing to deserve this.

Wish you all the best of luck. If I ever pull out of this I will dedicate my life to trying to come up with a cure for dysautonomia, so the rest of you don't have to continue going through this ****.

Tyler

[RichGotsPots]

Tyler,

If you know you have autonomic dysfunction or POTS, irrefutable testing is the most important thing to convince other people and doctors. My suggestion is to call every neurologists off, I mean over 100 neurologists office until you find one that does a Sweat Gland Nerve Fiber Density Punch skin Biopsy . That tests for autonomic neuropathy (make sure its not just the sensory biopsy) If that comes back positive doctors and family will have no choice but to take you seriously. The next step is to find a doctor who will look deep into your cause. I would start with Autoimmune illness and don't just go to your local Rheumatologist who will run basic blood tests. Find a top world renown rheumy who will do nuclear scans, and all different biopsies. Half of all autoimmune people do not have raised antibodies of any kind. Get them to order Mayo's Autoimmune Dysautonomia Panel and make sure it is mailed to Mayo in a cooler over night. Dont depend on your doctors to make sure this is all done properly. Good luck, wish you well

[****onearth]

Tyler,

If you know you have autonomic dysfunction or POTS, irrefutable testing is the most important thing to convince other people and doctors. My suggestion is to call every neurologists off, I mean over 100 neurologists office until you find one that does a Sweat Gland Nerve Fiber Density Punch skin Biopsy . That tests for autonomic neuropathy (make sure its not just the sensory biopsy) If that comes back positive doctors and family will have no choice but to take you seriously. The next step is to find a doctor who will look deep into your cause. I would start with Autoimmune illness and don't just go to your local Rheumatologist who will run basic blood tests. Find a top world renown rheumy who will do nuclear scans, and all different biopsies. Half of all autoimmune people do not have raised antibodies of any kind. Get them to order Mayo's Autoimmune Dysautonomia Panel and make sure it is mailed to Mayo in a cooler over night. Dont depend on your doctors to make sure this is all done properly. Good luck, wish you well

Thank you!! I will get right on that.

[****onearth]

If I have hyperadrenergic pots and I take an Adderall (because I'm so fatigued I can barely move), I'm concerned about the increase of my blood pressure and heart rate. How long and hard can heart rate and blood pressure be elevated before death occurs? Does it take years of elevation to kill, or can I cause immediate death by a one time substantial increase?

If I have any chance of actually getting appointments somewhere I have to be on some meds, but no one to manage them. Does anyone have any experience with Adderall?

[Katybug]

Hi. Even if you don't have a doctor to call at the moment, the pharmacist who filled that prescription should be able to talk to you about the safety of taking the drug based on your health issues.

Please be careful.

Take care,

Katie

[bamboozlem]

Hi Tyler,

Just curious - do you have Ehlers Danlos?

[RichGotsPots]

Tyler,

Surprisingly Dr. Grubb has a general paper out on POTS where he lists all different meds and patient experiences. For hyper POTS adderal is listed as having a very high success rate even though it is a stimulant. I don't thing there is any number or percentage that can tell you your limits, but it's wise to find a good doc who can guide you. If it is causing your HR to spike you might want to ask a doc about having you take a. HR lowering med like Invibradine or a Beta Blocker to counteract that. Clonodine is probably also a good med to ask about if you have hyper pots..