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Stories Of Recovery


davecom
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YolalnBlue,

Your story sounds so similar to mind although I was older when things started. I am now 55. Like you many tests, hospitals theories etc. and like you I have pulled back a bit from trying to figure it all out. I too am gluten free, pace myself, hydrate etc.. Interestingly my right side is far worse too. I also have severe migraines and head pain which begins on the right side. I had bell palsy once on the right side so thought maybe damage from that. I saw you listed possible migraine phenomena. What exactly is that? It was so nice of you to share your story and information. All the best to you!!

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Angelloz, thank you. All the best to you, too!

I've had migraines for many years, they run in my family, too. I am not sure exactly what " migraine phenomena" means. That's the diagnosis Mayo Autonomic Clinic put after my appointment, "orthostatic intolerance and possible migraine phenomena". I was told that preventing migraines might help my dysautonomia symptoms. During my visit they only did Tilt Table and testing for autoimmune antibodies, and concentrated on figuring out better medication. In particular, they wanted me off florinef and using midodrine more, adding a beta blocker to prevent migraines. My cardiologist didn't agree, because sometimes my blood pressure runs very low and my resting heart rates can go in the low 50's. Migraines can be horrible, but honestly, I don't feel my dysautonomia symptoms worsening during migraines.

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I know that people diagnosed with Stiff Person Syndrome usually have elevated GAD antibodies. We had one person on this forum that finally found out that she had these antibodies, had either IVIG or plasmapheresis(can't remember which one), and it got rid of her dysautonomia. It might be worth another opinion.

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Yola,

Thanks for your story...gives me hope.

Couple questions--you mentioned IV fluids-were they at home or at a hospital ER or as an outpatient at the hospital? I've had to go to the ER a couple times and it's such a hassle. Don't really want to do home infusion either though. I've read that some patients get a standing order at a hospital outpatient department or a walk in clinic and can just get IVs as needed.

Also, you mentioned weight loss--I've had severe weight loss due to loss of appetite and nausea; just wondering if you've been able to gain or maintain since your symptoms have eased. It's so frustrating to not be able to maintain at the low weight I am now. I still have very little appetite and nausea especially with flares. I'm so tired of looking sick since I'm so skinny and my clothes not fitting!! Contemplating gluten free as I've had IBS, GERD, and other GI issues all my life but have tested negative multiple times for Celiac but I know you can have a sensitivity to gluten without Celiac but I don't know if I can do such a restrictive diet especially when I'm trying to gain weight. It's all so frustrating!!

Thanks for any info you can provide.

Best wishes for continued recovery!!

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Newoldpotsie, I had a prescription for IV saline from my dysautonomia doctor, and usually went to a walk in clinic. They don't want to do it there more than twice a week, but even that helped me a lot. My husband called several doctrors in our area, and that's how we found a clinic that agreed to do give me IV saline. A prescription for IV fluids also helped me when I had to go to ER during a flare. They just took me more seriously, I think, and I got IV right away.

I have been gluten free for 2 years now. It hasn't been a magic remedy, but it helped me with nausea, bloating and dizziness after meals. I haven't had any GI issues for the last year. I am nauseated only when I have migraines, but I had them for many years. I have gained all my weight back within months after the initial flare and starting florinef. During each flare I lost a couple of pounds, but they always came back after I got better and ate regular meals. Eating small meals at regular intervals during the day seems to help me with lightheadness, too. I eat salty snacks from lunch time till dinner, when my blood pressure is usually at its lowest, and drink a cup of water with it. I couldn't tolerate salt tablets. There are grains you can eat being gluten free. I make my own baking mixes from rice flour, tapioca starch, quinoa and buckwheat flour. Yesterday I made my own gluten free tortillas. It's not as restrictive, as you might think. My daughter has GERD and I put her on a gluten free diet as well. It helped her a little, but not much, unfortunately.

My best to you, get well!

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