kristinp29

Yes, stress is definitely a factor!! I deal with stress by exercising. I don't do much, because I can't yet, but I've been working up to doing more as I feel up to it. It helps me feel more in control of everything--my body, my stress...my life. That's about it! Kristin

Oh, Mary...tears welled up in my eyes as I read your post and as I'm responding. They're sympathy tears, as I've been there. There was a time that I never thought I would get well, that I would never have a life, that I would be stuck while everyone else went on with their lives and drifted farther and farther away from me. That was about two years ago. Now, I just finished my first semester of college after being homebound for 2.5 years. I don't have any pain or harsh symptoms anymore. I only battle light fatigue (it's light because I've experienced the kind of fatigue that feels like bricks are deep inside you and you can't get out of bed). Mary, there's hope. You just have to keep believing, praying, and hoping--even when it feels like you're trapped, there's no way out, and you have nothing left. I know it seems impossible, but somehow you just keep fighting. One day, you'll be amazed by where you are, what you've gotten through, and how strong you were when you thought you couldn't do it anymore. Send me a message if you need to talk. You're in my prayers. With Love, Kristin

Hi, I'm sorry to hear that you had such a bad episode!! I used to experience episodes of paralysis. It usually happened at night. The only part of my body that I could move was my eyes, and I could produce a nearly inaudible whisper. Since it happened at night, I usually ended up falling asleep and by morning it was over. But, my point is (long point, hey?!) that it happened while lying down. I hope you're feeling better now. I'm thinking of you! Kristin

I used to get tremors all the time. In fact, one night I went to the ER (for a different reason--an episode of paralysis) and started jerking very badly. The ER docs called it "myoclonic jerks". I don't experience those things anymore, but some days my fingers still have a slight tremor. On those days, my handwriting is a little messier! Kristin

Hi Ben, I applaud you for "coming out"! It's so great that you felt ready to tell your story. It sounds like you've been through some incredibly frustrating circumstances. I hope that 2005 will be a breakthrough year for you. Email me anytime if you have any questions about symptoms, etc. or you just want to vent. --Kristin Wisconsin, USA kpare29@mail.com

I'll second what Kristen says.

Ooo, great topic!! Old Movies Arsenic and Old Lace (Cary Grant) Breakfast at Tiffany's (Audrey Hepburn) The Philadelphia Story (Katharine Hepburn and James Stewart) Singing in the Rain (Gene Kelly) Comedy/Drama Forrest Gump Pirates of the Carribbean: Curse of the Black Pearl Drama Cold Mountain Steel Magnolias There are sooo many more, as I LOVE movies, but I can't think of them at the moment!

Keep being resilient, Paige, as it sounds like you are. You're in my prayers.

Hi Dawn, Good luck on your trip to Mayo! You'll be in my prayers. Hopefully you are not too far from Mayo and won't have that long of a bus ride.

You're right--homeopathic/vitamins/herbs does not mean safe! They should always, always be taken when you are under the care of a naturopathic doctor, who knows more about nutrition than the average doc (they are not taught much about nutrition in med school) or a nutritionist. I was never able to handle any amount of medication. I'm hypersensitive to all drugs to the extent that I get all the "rare" side effects when I take even the smallest dose. I've seen a nutritionist since July 2002 and take numerous supplements which have helped me tremendously. My nutritionist spends a lot of time cross-referencing interaction possibilities with everything she suggests I take. She's very good with dysautonomiacs and has several clients with dysaut. Yes, I've had the bloating, too. It's so awful! Last year, I actually gained 12 pounds in 3 weeks simply from POTS. It took me MONTHS to work it off, since I couldn't exercise. As a teenager, I was absolutely devastated. POTS causes some crazy things...

Hi! I used to be a very active member of DYNA. If you were a member in or before December 2004, then you probably have seen a post from me!! I was recently kicked out of DYNA. The bottom line is that the President of DYNA did not want to accept that I am being healed through nutrition and did not want me to share that with other people. I see it only as my duty to share this with others. It is then up to each individual to decide which treatment is right for them; but, everyone should be aware of all options before they make a decision. You know? Anyway, I'm wondering how certain DYNA members are doing. Specifically, Peanut, who was in the hospital when I was kicked out. I'm really hoping she's ok. We used to talk a lot and I miss her. I used to have her contact info, but lost it when I lost DYNA membership. Thanks and Best Wishes! Kristin

I had bronchitis in September 2001 and my immune system attacked my nerves. I didn't experience dramatic symptoms until Jan. 2002 and wasn't diagnosed until August 2003. I'm sure a lot of you have experienced the whole doctor-tells-me-I'm-crazy thing. Ugh... annoying!

Okay Ben, I will try to reply to everything included in your post, but I can't make any promises as it was VERY long!! The sense of missing something is a feeling I used to experience at times. It's frightening. I never figured out how to make it go away. It just went away on its own. About breathing...I can only tell you that sometimes I would (and still, on occassion) breathe out very rapidly. It's as if my diaphragm and other lung muscles contracted really fast and squeezed all the air out. At least on these two fronts, I can tell you that you're not alone!!

I used to have similar OI. Your fatigue on some days sounds like it could definitely be your dysautonomia. I used to get that, too. Fun, isn't it?! The headaches also sound familiar. I think it's your dysaut. Seeing a neuro is a great idea! I think he/she will really help you pinpoint your symptoms. Good luck!

Could it be another form of dysautonomia?

YES!!! I had the hardest time shaking off viruses. I caught eVeRyThInG. I've been on a nutritional program (supplements suggested by my nutritionist) and I believe that it's the combination of nutrients that I've been taking that have prepared my immune system for the germy sespool that is college.

Have you tried eating some protein? For a while, I'd get symptoms of hypoglycemia and would need to eat protein immediately. It would take a few minutes to help (after I ate), but then I'd perk up. Drinking Smart Water, made by Glaceau, has also helped me in the past. Unlike Gatorade, it does not have any sugar. It does, however, have electrolytes to boost your energy. I buy mine at Pick N Save. Also, have you tried taking a 50mg Vitamin B6 tablet? Those help me perk up as well.

Sudafed made my heart rate skyrocket.

Hi Mindy, I got POTS in Sept. 2001 and wasn't diagnosed until August 2003. I was homebound for 2.5 years and just this fall, I attended my first semester of college. I went part time, but that was soooo great for me! I just wanted to let you know that I'm currently 17, and have felt EXACTLY the way you described about having the same ailments as your grandmother's friends!! It can get better. Keep hope alive. I was never able to handle medications, my body was too sensitive. Since July 2002, I've been on a regimen of supplements suggested by my nutritionist, and they truly gave me my life back. I would say that I'm 99% healed so far, and keep getting stronger. My neurologist is shocked at how well I'm doing. I've been called a "miracle". Just to give you an idea--I used to get episodic paralysis. My tilt table and autonomic tests show remarkable improvement since May 2002. Email me if you (or anyone else!) have any questions. I'm sure I'll be posting more on this topic later. I really want everyone to know about this alternative form of treatment, since it's helped me so much.

Hi Lisa, I actually consider those things exercise on my more difficult days! I figure that if I work up a sweat and breathe harder, it must be exercise! On days when you have more energy, just try walking a little bit. You can start out with something as little as 4 minutes and just keep working yourself up in little, tiny increments as you think you can handle it. I started with that while I was homebound for almost 2.5 years with POTS, and last semester I attended college part time! It really helps, and you keep gaining more energy the longer you stick with it. Best of luck to you! Kristin