Tuesday

How is your blood pressure? When mine was consistently low, I would have a horrible time in the mornings. It would take up to two hours for my brain to feel awake, every morning I was foggy and out of it. It's gotten quite a bit better since I've been on Florinef, which has helped keep my BP higher. I've also found that cutting out gluten has helped with the brain fog and fuzziness. I feel more clear when I wake up and it's easier to get moving. But, I still have some days where it comes back.

My husband was actually doing some research on Dysautonomia for me (he has access to medical journals via University library access) and found information suggesting that gluten acts directly on the autonomic nervous system, and is thought to contribute to neurological symptoms across various illnesses. This was enough for me to give a gluten-free trial a shot. I can't state with complete certainty that that's what is responsible, but I have noticed a large improvement in brain fog and some gastro-intestinal symptoms since going gluten-free. I can't find any medical journals through a google search, but here is a paper outlining the hypothesis: http://lloydchiro.com/wp-content/uploads/2013/09/The_gluten_syndrome__A_neurological_disease.pdf

What records do they ask for? I could go ahead and start getting copies pulled. Obviously they'd want to see records from the cardiologist, but did they ask for anything else? Neurologist, gastroenterologist, rheumatologist?

I'm considering applying for the Vanderbilt inpatient research study. I know that several people on this forum have participated, but I was hoping to get a little more information about the process. How long did it take you to hear back once you submitted your paperwork? Do they select only certain patients? Do you have to be diagnosed specifically with POTS, or do they accept other Dysautonomia diagnoses? If you are selected, how far in advance do you receive notice of your appointments? How long do you have to be off of your medication prior to the appointment? What kind of information did you receive after the study? Did you find it useful? Overall, do you feel the trip was worth it? Anything else you would like to share about your experience? Thanks so much!

Brain fog was previously one of my worst symptoms, and as a knowledge worker, one of the more debilitating ones for me. I have found that eliminating gluten from my diet has improved this significantly! However, I still have days where it comes back and can be pretty rough. But I'd say overall I see about a 75 improvement from eating a gluten-free diet.

I would not rely on Chiropractic to cure, or even help, anything. You may want to consider doing additional research into its (lack of) scientific validity. http://www.sciencebasedmedicine.org/the-end-of-chiropractic/

True. There's a lot more to POTS. Florinef has helped a lot of my major symptoms, but I still have a lot of issues. Florinef has eliminated palpitations and my overwhelming sense of dehydration, but it doesn't do much for my energy/fatigue, brain fog, or digestive issues. But it's a huge burden off my plate of symptoms.

My cardiologist diagnosed and treated me with low blood volume, with no additional tests other than a tilt test, echo, and 30 day holter. I also had extremely low blood pressure and severe palpitations and tachycardia prior to treatment. My body does not hold onto water at all. Within about 10 minutes of drinking anything, I'm in the bathroom. It's not uncommon for me to make 8-10 trips during a work day. Drinking 100 oz a day was a minimum, and I would often still feel dehydrated. I seem to have pretty much eliminated my low blood volume with a combination of Fludrocortisone and salt tablets, though. At least, it doesn't seem to be an issue anymore, and now my blood pressure is high and I'm being treated with an ACE inhibitor. I can drink a more 'normal' amount of water through the day and it seems to stay where it's needed, and I'm *much* less likely to get dehydrated.

When I was first diagnosed I had palpitations almost constantly, every day. It was unusual for me to have a regular heartbeat. I've been diagnosed with low blood volume and low blood pressure. I noticed that after treating that with Fludrocortisone, my palpitations stopped almost entirely. So, for me at least, I think they were caused by low blood volume. My blood pressure is high now, and I'm treating it with an ACE inhibitor, but when I forget to take my Fludrocortisone or if I get dehydrated, the first indication I will get of feeling bad is the palpitations will come back.

Unfortunately, the dizziness seems to be one of those stubborn symptoms that nothing seems to help, entirely. There are lots of medications for you to try, however. Check with your GP or cardiologist. They will want to make sure you are drinking enough water and getting enough salt as a first line treatment. You can also try compression stockings to see if they help. It may also help to define more specifically what you mean by 'dizzy.' Is it light-headedness? Brain fog? Room-spinning? Spots in your vision? Try to keep a log. Dizziness, light-headedness, and vertigo have been big issues for me, and they flare every so often over the years. I have found a combination of meds and diet that works for me, but everyone is different. The biggest things that help for me are making sure I am very well hydrated, taking Fludrocortisone, and cutting gluten out of my diet. I would say that with these treatments, I've improved my dizziness/light-headedness and brain fog about 80%.

Instead of tea or hot chocolate or coffee, try warming up a mug of chicken broth. I know, sounds weird, but it's soothing and a great way to get your sodium! Investing in a good humidifier has helped get me through many colds. I tend to go straight from "I might be getting sick" to "full blown sinus infection" in about a day, so this helps immensely. I hope you feel better soon!

Oh joy! I remember my 30 day holter, in the middle of a Florida summer, too! It definitely got a workout! Hope you manage to catch all the symptoms you need to! I don't envy the thought of having to go through that again

I have had something similar, with scotoma (a hole in my vision) and aphasia (inability to get words out, despite knowing what I want to say). It's incredibly scary, I'm sorry you've been through that I've also had severe acute-onset double vision, but that was due to an allergic reaction. I'm glad to hear the Reglan helped!

How many I'm on varies from month to month, or day to day based on symptoms. But generally my "core" meds are around 7, and I can have up to 15 per day if I'm in a flare or have other symptoms popping up. That doesn't include vitamins and other OTC meds. I've been told to stay on Vitamin D and B to offset deficiencies. Had a prescription for awhile but it's easier for me now to just get the drops and take those daily. Had a prescription for allergy meds for a while, but it's cheaper now for me to get OTC.

Correlation does not equal causation. Up until I started medication for my Dysautonomia, I was rail thin. It was difficult for me to gain weight no matter how hard I tried. As I've been treating my symptoms and started feeling better, I've been able to take better care of my body in general. That, combined with the side effects of some of my medicine, has caused me to gain weight. As I start to feel better, I am indeed gaining weight. But I don't think that's the reason for my improvement. I'd seek a second opinion.

Thanks for the advice! We have wood floors so that helps some. Definitely keeping the windows closed and staying in as much as I can. I may have to look into an air purifier. If my doctor is open tomorrow I may go in and see if there's anything else they can try. I'm pretty sure it's not a sinus infection, but I'm afraid it might get there if it keeps up. I've been using a neti pot, too. I'm just about to tear my hair out! About to go mix a little honey/whiskey cocktail to see if that helps

It's been a particularly rough allergy season all around, it seems, but I am absolutely at my wits' end. It's been over two months since I have been able to sleep through the night without waking up every hour or two coughing with my eyes watering. I feel like a zombie and I just want to scream. I'm taking a daily allergy pill (started with Claritin then doc told me to try Zyrtec), two antihistamine nasal sprays (Astelin and Fluticasone), Coricidin decongestant, Benadryl at night and NyQuil to try to help me sleep through and still none of it is working. I can't sleep for more than a couple of hours without waking myself up coughing. I keep Chloraseptic throat spray by the bed because it's the only thing that will work to numb my throat long enough for me to fall back asleep and get at least a couple of more hours of sleep before it wears off and the coughing starts all over again. I'm literally going insane over this. My doctor doesn't know what else to try. Has anyone else got any suggestions?

Add me to the list please!

I used to have horrible problem with shin splints and basically thought I'd never be able to run because of it. A few years ago I tried the Vibram minimalist shoes and found that it completely eliminated my shin pain. Maybe a shoe with a more minimalist sole might help?

I have done this several times. I have no idea what causes or triggers it. I wake up basically having a panic attack. It takes forever for my heart rate and breathing to calm down enough to get back to sleep.

Too much Sometimes it's every 20-30 minutes during the day, sometimes only a handful of times a day.

When my BP was low, it seemed that I was always worse in the summer time. The past few years, it seems I have been worse in the winter, and my BP is actually too high. I don't know if those things are related.

I was on Omeprazole for over a year, then my pharmacist stopped filling my script because of an interaction with Fludrocortisone. I went back to my doctor and now I'm taking prescription strength Lansoprazole (Prevacid) daily. I can't go without it, I've tried. It makes it impossible to sleep without waking up choking on acid. I do worry about the long term effects of being on a PPI though.

Ooooh, this is a fantastic idea!!! I have realized that I definitely need to get more organized about putting together my own "medical chart" to keep and share with doctors. This is a great way to start! Thanks for sharing, I think I'll try something similar

Yeah, I was wondering if being on Florinef was making my BP too high, but my cardiologist told me to stay on it and just added Lisinopril to lower my BP. I really don't know what to expect going forward