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Newbie--Need Help! Advice....Anything!


Godsgal
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Hi....I'm a 29 year old mom with a 9 month old and a 3 year old. 4 weeks ago my whole life changed. I went from being active, exercising, taking care of my kids, to not being able to walk around much more than to the bathroom. I have been to the hospital 6 times in the past month due to fainting, bp drops, high heart rates, etc. I need advice, understanding, and similar stories so I don't feel alone and can get help.

For years I would randomly get black tunnel vision with a quick change in position but it would go away in a few seconds and I would chalk it up to my low blood pressure. I would also feel faint at times and I would rest and take fluids and the feeling would dissipate. I'm petite and my bp usually runs in the 90's over 60's. I moved to Broward county, Florida a few months ago into a house that had toxic mold. We realized it after a couple months and it was tested/confirmed with toxic mold. 2 days after I moved from that house I went nearly unconscious while shopping with my boys. I had about 4 hours of dystonia in the hospital....I couldn't talk right, or control my arms, legs, or tongue. I had tons of testing done and was sent home after 5 days telling me I had neurocardiogenic syncope. 2 EEG's were normal. Scheduled for a video EEG.

I have not felt the same since. When I got home, I realized that I couldn't do any form of physical activity. Nothing. If I did, my heart would pound and race and I would get shortness of breath. I thought that quite strange and scared me half to death. I got a cardiologist and insisted I wasn't nuts and that something was wrong with me. He ordered a 10 day heart monitor for me which showed my heart rate going up to the 140's and 150's out of nowhere. He had never heard of POTS until 3 days before and thought I may have it. He sent me from his office to be admitted to the hospital because I could barely walk when I was there and I was passing out in the office. An EP confirmed the POTS diagnosis after the second tilt table test.

Since then I have had different days, different symptoms. At one point, I was unable to sit up at all. The midodrine has helped with sitting up. Now I'm on Celexa, Toprol, Midodrine, and Fiournef (wrong spelling). At this point, I can't walk or stand much at all. Walking to the bathroom is the extent of what I can do. I get shortness of breath, like a heaviness in my chest, if I walk around my house too much. It lasts for about 15 minutes after I have stopped the activity. I need a wheelchair to go anywhere if I even feel like going. I wake up suddenly out of sound sleep with my heart racing. I get burning skin episodes like hot flashes without the profuse sweating. My vision has changed....light coming in through the blinds looks strange, makes me feel disoriented. Looking at the pond in my backyard and the way the water moves makes me feel strange also. I get shaky if I do too much walking around or standing up. No blood sugar issues.

I suspect I have MCAD after some research on here b/c I have had hives, sometimes daily for years and years. I wore compressions for 2 days straight and when I took them off I found a giant ridge/lump in my muscle. My PCP thinks it's a giant fatty tumor (lipoma). Tested negative for a blood clot.

ANY HELP, ADVICE, SUGGESTIONS, SIMILAR EXPERIENCES, would be VERY APPRECIATED. THANK YOU

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Welcome--glad you found us but so sorry you had to. Autonomic dysfunction can come on suddenly and literally knock you off your feet. It is scary. That is amazing that you got diagnosed so quickly. What can take awhile (besides getting diagnosed, for many people) is finding the right combo of treatment to get you better.

Let us know how you are doing. Hope you begin to feel much better soon.

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I just wanted to respond to your post - it sounds like you are really going through it.

I have found that I have to be an expert on my own body/condition. I used to follow every bit of advice from well-meaning people, and spent a lot of time, money and effort trying new supplements/vitamins and even meds - to no avail. I guess what I'm trying to say is that it is incredibly useful to hear about others' experiences (it's why we're all here to some extent, I suppose) - but that it's equally important to recognize that what works for one person may not work, or may even be harmful, to you. I know that's frustrating - why on earth can't someone just tell me how to get better???? - but I'm continually surprised at how different we all are despite the similarities in our conditions.

That being said, here's what has worked for me - when I have that awful panicky floor-dropping-out-under-me feeling, I take a very small dose of propranolol (it's a beta blocker). I don't like the side effects, so I don't take it regularly (I have low blood pressure and neurally mediated hypotension), but for those times when I am going through a "bad patch" I have found it is useful. I take midodrine daily (about 5mg a day in total, broken up into small doses), but during the bad times, it doesn't help at all. I absolutely cannot tolerate Florinef or cortisol (in any form).

You may need to spend some time juggling your meds to see if a particular combo works for you. I hope things improve for you soon!

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Hi there-

Sorry you are having such a rough time. I felt the way you describe last summer but have gradually being doing better. Midodrine was a good start for me, then gentle water exercise, then the MCAD meds (there's a good youtube videa about MCAD - search for Mast Cell Activation - it's the one with Dr. Castells, and they explain the meds). I was bedridden, huddling to the bathroom and back, and now can drive again, go to appointments on my own, etc.

Contact me any time if I can help -

Sarah

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Welcome. Sorry you've had a need to find us. Hopefully you can get info here that will help you. You are definitely not alone. I think a lot of us here had the same experience of being very active, in good shape physically, enjoying life until "everything changed" and now we have an array of symptoms that make most doctors just roll their eyes at us. However, WE know that what we're experiencing is real, is miserable and totally life changing. And, once in awhile when you can "prove" it to a medical professional (e.g. with a TTT etc) it does a lot to make you feel more validated and less crazy! ;)

I agree with MomtoGiuliana though when she talked about being bedridden in the past by this. I too was off work for 9 months and had to make many life changes just to function at a minimal level. With meds and a cardiac rehab program I am much better in general. I still have some pretty significant "crashes" when anything challenges my ANS... like colds or dental work or infections etc. But, I also seem to pull out of those crashes faster now too (faster- meaning weeks instead of months), so I'm very grateful for that.

One of the hard things about dysautonomia is that our symptoms present differently for all of us. As you read the forum here you'll probably find a wide array of symptoms and may start to notice patterns with other individuals who have symptom groups like yours. That's why I appreciate people who've added a "signature line" on their forum notes as it gives me a chance to kind of see who has similar symptoms and what they've found to be useful in their treatment.

Good luck figuring out what works for you. Thanks for joining your voice with ours to help us all sort this mess out! :)

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