HopeSprings

Sorry to say there aren't too many to rave about in the area. What are you trying to do - testing, diagnosis, treatment? I saw Dr. Louis Weimer and I think he's great for testing, also very nice. As far as treatment, I think they all pretty much have the same things to offer.

I have MCS and have read that electrical sensitivity can be a part of this. I haven't made this connection for myself, however - but with electrical devices all around us, who knows, I suppose it could be part of the picture. I do feel weird in MRI machines - pressure in my chest and heart feels like it's beating funny. Here's a little thing about ES: http://www.tldp.com/issue/179/emf179.htm

Awesomely awesome! Anything anyone can do to spread the word helps us all! Would love to read it when you're done if you care to share.

Duh, with my own hearing looming sometime in the future, I meant to ask you questions! What was the process like, what types of questions did your attorney ask and what did you say? Thanks.

I was thinking about you today and wondering! Glad it's over and you're feeling positive about things. I hope you get an answer soon. Let us know.

I get automatic updates sent from CFIDS and this one came in today, if anyone is interested. Mostly about ME/CFS, but there is also a little section on POTS. "The final version of the National Institutes of Health workshop report on the 2011 State of the Knowledge of ME/CFS Research has been posted at" http://orwh.od.nih.gov/research/me-cfs/pdfs/ORWH_SKW_Report.pdf

Yup, day to day, even hour to hour symptoms will improve or worsen with no rhyme or reason. I haven't found a way to control any of this and I haven't been able to make sense of it either. I try to remind myself when things are really bad that they will improve again and to just hang on until then. It's not easy. Hope today is a "better" day for you.

Amazing how others, especially Doctors, have the ability to get into our heads and make us question and doubt ourselves. I've been in your shoes many times before, especially before diagnosis. I now know when I go into a Doctor's appointment chances are I know more about this illness than they do, therefore, if any stupid or insensitive comments are made, this comes from lack of information, misinformation and ignorance. Stress is a component in any chronic illness and may exacerbate symptoms, but is not the cause of our illness. Autonomic disorders present with such a vast variety of symptoms and we don't all present with the exact same set of symptoms. I have probably 30 symptoms head to toe that don't seem to connect, but dysautonomia pretty much explains it all. I can understand how a Doctor would be confused, but I hope going forward that more and more Doctors will learn about this illness and will get better at connecting the dots.

True, Bren - it's all about weighing risk/benefit. If it gives quality back to your life then I understand taking a chance!

I'm sorry Bren. Hope you'll be able to taper with no ill effects. Have to say I'm not surprised and it was one of my fears/ suspicions with Florinef even though they said oh, nooo it's not that kind of steroid. This is the problem - it seems there are few medications for POTS that can be taken long term without facing potential problems down the road. !!

Kelly - do you think the biotin is helping? I miss my hair.

How exciting - congratulations! If you google "anesthetic management POTS" a few articles pop up. This was my experience: I asked my POTS Dr. at the time to write a letter on my behalf (still have the letter) and he wrote "There are no specific recommendations for pregnancy in the literature although volume loading if often helpful. From an anesthetic point of view BP can also be sustained with phenylephrine if not otherwise contraindicated. Between volume loading and phenylephrine things should be quite manageable." I also spoke with the anesthesiologist beforehand and discussed my concerns. He said he was going to look into it for himself, so I assume he came prepared. Anyway, it all turned out fine. I had the epidural and am not aware of anything negative happening. As far as I know, my body did fine with it and no intervention was needed. Definitely let the Doctors involved know about the dysautonomia so they can devise a plan for you. Good luck with everything!

You've probably seen these, but just in case - Dr. Stewart studied this with transcranial doppler. First results showed yes, but another similar study with CFS/POTS people showed no. I think a do-over is needed. I can't imagine what else could cause the lightheaded feeling since laying down helps to relieve it. http://www.ncbi.nlm.nih.gov/pubmed/19502561 http://www.ncbi.nlm.nih.gov/pubmed/21919887

I think so. This has come up here before and lots of people have said the same thing. I've had hair loss since my illness began and I haven't been on medication.

More good thoughts headed your way! :wub:

I have a lot of leg pain too, especially at night. I have neuropathy (as many of us do) so it could be part of that. Or I wonder if it has something to do with our circulation or the frequent pooling, as I have more pain in the summer. Not really sure of the cause, but I do think it's part of dysautonomia because it came with my other symptoms.

Thanks for all the great suggestions. I'm still undecided - lol. If there was no negative side effect or it helped right away, I'd still be taking it and I'd be happy to have found something that works. Now that I know how it makes me feel, I would need to be able to commit to at least several days of feeling even weirder than usual and I can't do that right now. Why do these pills always make my head feel weird- this is already my biggest struggle. I'm having an acceptance problem too. I'm still hung up on finding the underlying cause and treating that, not the symptoms... but at this point, I know rationally that probably isn't going to happen anytime soon and I need to do something now to feel better. I'll let you know if I ever make a decision.

Glad you posted this too. I was also thinking about you, Pumpkin, and wondering what the surgery date was. Sorry it got moved - that stinks! Maybe you can do something fun this weekend to distract yourself a little? I will be sending positive thoughts your way on Monday!

Keep this is mind... My attorney told me they need to know you are incapable of performing any type of work, even mindless, sedentary work. She said if you can put widgets in a box, in their eyes, you can work. I was surprised to hear this, had to think about this and came to these conclusions: Could I do something that simple all day? The answer is no- I could probably put widgets in a box for an hour, but not for 8. There is no job which requires standing for any length of time that I could perform because of tachycardia and dizziness. Even if I was able to sit while doing this, it would be hard to focus my eyes that long, it would be hard to be upright that long - I'd be dizzy and exhausted pretty quickly. I often have to lie down to combat the spacey feeling and bring things back into focus. What job could accomodate a siutation like this? You could talk about the lack of physical and mental stamina, the chronic fatigue, feeling off balance, dizziness, cognitive problems and the need to lie down. Is there anything you can do for 8 hours, all day, 5 days a week? I can't think of anything. Also, the unpredictable nature of the illness. One day I might be semi-functional and the next find it difficult just to walk across the room. One day my mind might be somewhat clear and the next I can barely think and find it difficult to speak in coherent sentences. How can an employer depend on us - we're not reliable. It's not fun to admit this, but we're not exaggerating - it really is this bad, so don't be afraid to express that. Let us know how it goes and good luck, Dani!

This happened to me too. I was summoned - got out with a note Dr's note and then within the year, I was summoned again. I felt bad going back to my Dr. again and asking for another note, but had to. PCP wrote a note saying something like I had POTS Syndrome which caused fatigue and dizziness and that I wouldn't be able to stay upright for many hours and it would be too exhausting. I don't think the court people scrutinize the Doctor's note too closely. I think just having a Doctor say you're not well enough for whatever reason should be enough.

This is exciting! - I would love to go to Vanderbilt. Do you have to be off medications before participating? Do you know if they'll let you in on results since you're not going there as a patient, but as a research participant? I hope this will be a positive experience for you and that you'll gain some valuable information. It's also a great thing you're doing - volunteering to help researchers understand dysautonomia... it helps all of us.

Diamond - that's good advice. Last night my husband was like oh come on, just take a whole pill and see what happens. I decided to try it since I'd be going to bed anyway - still had head weirdness, but it didn't put me to sleep this time. I was hoping there would be enough in my system to help the morning tachycardia, but nope - I was tachy as ever. Maybe I'll try your suggestion. Or I might wait until the fall when both kids will be in school all day and I can test things out without them being affected. I don't want to feel medicated - I want to feel better. There's also a lot of fear about addiction and withdrawal after past experiences with other medications. I'm not sure I can get past it. I'm a difficult patient, I guess.

Well, I took my quarter of a pill last night around 9pm, felt sleepy within 1/2 an hour and went up to bed. Was trying to figure out something with the remote control that I normally know how to do- was taking way too long for my brain to process and realized it might be the medication. Went to sleep, woke up wide awake at 4:30am and decided to take another 1/4 since I knew I'd be up again around 7am when my heartrate is the worst and wanted to test the medication out on this. Slept until almost 10am (this never happens), felt pretty loopy, lethargic etc. heart rate still went up into the 130's getting up. Felt weirder than normal in the head through the morning. Took another 1/4 in the afternoon, loopy head again, but not as bad as in the morning. I'd need a real dose to affect my heartrate, but I don't think my brain would tolerate it. I can't do this with kids. If I had several days to deal with side effects, time to adjust maybe, but not with people depending on me. I'll wait a few days and try again. If I get the same result, forget it. WHAT IS WRONG WITH ME?

That's great to hear, Sarah! I'm glad you benefitted from the program and had cooperation from your insurance company.

Thanks for the responses. I think when I'm feeling brave I'll take a 1/4 of the dose and see if anything bad happens to me. If it doesn't, I'll up it and go from there.