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Young and very ill with dysautonomia


Gwem
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Hi,

I'm new to this forum, but I wanted to give a quick run down of what my life has been for the past year and find out if anyone could give me answers on what helped them get through this.

I have had slight symptoms of dysautonomia similar to my dads but only on rare occasions and not severe in the least. However I have been suffering with sever dysautonomia/mvp syndrome symptoms for over the past year, I am now only 20 years old. Since September of 2003 my life has COMPLETELY stopped. I was so sick I ended up in the ER at college and have been home ever since seeing doctors and have been in and out of hospitals and emergency rooms, even spending christmas eve and day in an emergency room and the past 9 months home unable to even get through a meal without nearly blacking out from blured vision, head aches, legs and arms going weak, feet turning blue, cold hands and feet or being doubled over in abdominal and intestinal discomfort. I have seen three gastrointerolgoists, two cardiolgoists, an infectious disease specialist, an electrophysiologist and a neurologist. Three weeks ago I was taken to the NY Presbeterian Electrophysiology Department after I blacked out at the dinner table and my heart rate had dropped into the 30's. After having had a tilt table test while at Columbia NY Prebeterian it has been discovered that whatever is causing the symptoms and drop in heart rate and blood pressure is NOT caused by my sinus node and therefore is not my heart. They thought i was going to need a pace maker but luckily i didn't. However in the meantime the only answer I have is that I have to see a Neurolgoist that specializes in Dysautonomia. I have had Cat scans done, upper and lower GI series, ultra sounds, x-ray, holter monitors, echo cardiograms, etc. basically every GI test aside from a colonoscopy and endcoscopy. and every cardiological study.

My life for the past year has been terrible, I can't visit friends or even make it to the supermarket every day. My symptoms have gotten progressively worse and I feel as though I am never going to get better. I constantly look up information on dysautonomia and cures etc. I can't take beta blockers because i have such low blood pressure and a low heart rate. I've been treated for Hypothyroidism with Synthroid and I am on Aciphex for GERD. I WAS on nu lev and then on Zelnorm for IBS symptoms but they only made my other symtpoms more severe. I am completley giving up hope on ever being back to the healthy happy college student I was a year ago. I used to be able to play in a band, make it to all my classes lugging my backpack and instruments and play late night gigs. Now I'm lucky if I can make it to the store with my mother and be able to get through a meal without being in discomfort. Please let me know if there are any support groups or other young individuals suffering from this complicated dibilitating illness. It is so hard for me to explain to my friends what I have because they can't physically see it or have known someone with it. Some friends understand but it's still so hard because it seems there is no one that is going through this or understands. My dad suffers from similar symptoms and he went through a year and a half of not even being able to make it to his office he was so ill. and he is still not 100% better but is able to make it to work most days, however, he was never properly diagnosed nor was he ever given any medication to help with symptoms.

I am losing my faith that I will get better from this. It is so frustrating and upsetting that at 20 years old I can't even do as much as my 80 year old grandmother can do in a day.

:D

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Gwem, I am so sorry you are having such a hard time. I think most of us were at our worst before or right around the time of diagnosis. Once we found a doctor who had experience with dysautonomia/POTS knowledge, gradually most have improved, a lot to a fairly functional level. I hope that gives you hope. I was bedridden for several months at age 35, having to have my family take care of my 2 year old son, but with the right regimen dose and an understanding of what this disease is all about, I am taking care of him and even enjoying my life, just not in the same way that I was before. There are some people who have gotten better and there are some people who were cured, some who have had Chiari I malformations that were operated on. I have experienced relief in my symptoms I believe from seeing a D.O. who performs cranial osteopathy on me, which is gentle manipulation to realign the vertebral column and other body systems.

Has anyone told you about upping your salt and water intake. I don't recommend this until you have a definitive diagnosis but I think this thing alone can help a great deal.

Hope you get your answers really soon.

Elaine

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I support completely the post above. Most people with POTS get better, and many people get very much better. It does require diagnosis and proper treatment. It often takes awhile to find the proper treatment and for it to start to work. I was also bedridden with many of the symptoms you have about a year ago, at the old age of 34.

It's very hard. What is great is that even though you feel terrible that you have been doing as much research as you have. Understanding your disorder will go a long way to finding relief from it.

This Board is a great way to get helpful information and support from other POTS patients of all ages, so welcome.

Katherine

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In addition to what folks said above, I'm going to refer you to the DynaKids site. They're geared towards the under 21 crowd and you'll be able to get in contact with others your age who're going through the same process.

http://www.dynakids.org

Of course, you're ALWAYS welcome here too and so glad you found us and are getting support here.

Nina :D

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I'm sorry that your going through this but I'm glad that you found this website.

I personally see Dr. Grubb at the medical college of Ohio and he has been wonderful. He is especially great to see when your just trying to sort it out. I believe he sees more patients than anyone in the US. He's more familiar with treatments and he sits down and explains all of your symptoms and why they occur.

When I first started to see him I was about to leave my job because I didn't think I would make it through one more shift. I had to stop taking classes at college, I couldn't even think. The abdominal pain would be so bad sometimes, my gut felt raw and it would be hard to even walk. I had been through a few different beta blockers with not much luck because they made me bradycardic or just wanted to sleep 24/7.

Anyway you should check out some other websites

I know your older now but I had a good laugh reading some of the simplistic explanations of symptoms.

http://www.dynakids.org/index.jsp

C:\WINDOWS\Desktop\POTS\Postural Orthostatic Tachycardia Syndrome, Patient's Report.htm

http://www.ndrf.org/aboutndr.htm

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Gwem,

I am 18 and have POTS. I have been diagnosed for about four months now, but I experienced POTS sympotoms for about a year before I was diagnosed. I was really sick in the beginning of the school year and saw all kinds of doctors before I was finally diagnosed. Since I have been treated for my POTS with a high fluid, high salt diet and with Proamatine, salt tablets, and Provigil I have been feeling so much better. I don't have as much energy as I did before I was sick, but I am definitely on a functioning level.

I have been able to say in college through all this, and I am just about to finish up my freshman year. I definitely can understand how hard it is to go to school and deal with dysautonomia, and I totally understand why you decided to come home.

I would check out DYNA (there is a link in an above post). It's a great group of kids who can offer a lot of support. I am a part of it, and although I am one of the older kids, there are some that are in college and around our age.

If you ever want to talk or need to vent or whatever, please feel free to e-mail me.

I hope that all is well...

~Meghan :D

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Gewm, I am 20 and I have POTS. I was diagnosed 4 years ago. I can function pretty normally with medication and lots of salt and fluids. I hope that this site will help you, it has really helped me alot. You will get better, you just have to find a dr that will listen to you. I know that things seem bad right now, they did for me when I first got sick and even now sometimes, but it will get better.

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Gwem,

Hello! Welcome! I am 24 and have had POTS for 1 and 1/2 years. I can do small things like go to the grocery store. Other than that I rest at home and sleep lots. It is difficult feeling like I'm 90 when I'm only in my 20's. Plus, I look so normal and healthy - which is a blessing but hard too.

I went from being home-bound without meds to being able to do small things out of the house for short periods of time - with meds. (proamatine, toprol xl, paxil cr)

I hope you will improve quickly,

Lisa

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Gwem -

My heart goes out to you. My daughter was diagnosed at the age of 12. She turns 18 on Mother's Day :D . Please don't get too discouraged.

Have you found a doctor who is familiar with autonomic disorders? That's really important. I'm not sure where you live but if you're close by, Dr. Peter Rowe at John's Hopkins in Baltimore has done many clinical studies and written many articals on POTS, NMH and CFS.

Good Luck,

Margaret

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Hey

What school did you go to? I just graduated Barnard (after transferring from Johns Hopkins) and live in NYC. I will be going to a graduate program for decorative arts, material culture and museum studies in NYC next year and will live on the upper west side. I turn 23 next month and have been sick since the second half of tenth grade (I guess I was 15 and a half. WOW 7 and half years I cant believe it!!). However, I got sick gradually and had some symptoms as an infant (GI problems and severe migraines). It has been a long and hard process. If you live on Long Island, I suggest going to St. Francis Heart Hospital and seeing either Dr. Greenberg or Dr. Levine (my doc who diagnosed and helped me initially). Anyway, email me at mastergaia@yahoo.

Leah

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