Noreen

An article in Lancet on hypertension research said that those with the most variable blood pressure readings were most at risk of stroke. http://www.nlm.nih.gov/medlineplus/news/fullstory_96301.html None of my doctors ever take my blood pressure standing. I am seeing the neurologist and my primary MD on Tuesday. I went to a large university hospital neurology dept this week and was told fortunately that it doesn't look like I have Parkinson's and that my cervical torticullis should respond to botulism. However, she referred me to NYC or Rochester for the dysautonomia as they don't have a specialist. It took since Sept to get into this Neuroscience Dept. Beyond frustrating! I have not been happy with the info or lack thereof I've received from my cardiologist. I had no idea the symptoms that could go along with this. This website has been an absolute godsend in that regard. However, since it looks like I will have to educate the docs at least to a degree, do I start by insisting that the nurse give me both standing and sitting BP/pulse prior to seeing the doc? Anybody have a quick reference sheet for docs that I could use to orientate them? Thanks, Noreen

Sending positive thoughts and hopeful wishes that all goes well for Mack. Noreen

Flop- What a tough time you've had. Hopefully, things will improve, no more incidents will occur, and you will recover quickly. At least you won't be falling on the ice any time soon. l'm curious, too, how in the world you are typing. Mental images fail me and I am wondering if you've managed to get a program to dictate your posts into. Wrist pain is horrible. I don't know how you are managing with toileting and stuff. The basics are so very difficult after wrist surgery. Sending healing energy your way for a full complete and fast recovery. Noreen

Hi- I took Xanax 20 yrs ago for anxiety but have no experience with Propranolol. It worked well for me for anxiety. I don't know whether you took it once and it made you super anxious or on more than one occasion. You are taking risks by mixing meds without MDs knowing about it. Could you call the doctor's office to run it by them? Even with their okay, I agree with you about trying it before you are on the plane. However, how about practicing deep breathing and mediation techniques before your trip along with a soothing tape/CD/MP3? If you attempt to train yourself to relax to one tape you could listen, breathe and keep an even keel while waiting to board the plane, etc. The noise of public spaces adds immensely to my anxiety. Just suggesting more tools for you to draw upon

Erik- Thank you so much for this post. You have concisely explained many of my problems to me in ways that years of seeing professionals have not. I would love to see you post more on this topic. Blessings upon you, sir. Noreen

Erika- Does your ex and your mother think you are at a spa? Better get those nurses working on your pedicure. The added stress must be playing havoc with your system. I understand an ex-husband being so narcissistic that he doesn't want to be embarrassed that he can't be bothered to take his kids to baseball. Unfortunately you have to deal with him for the sake of the kids. Your mother, on the other hand, needs a cold dose of reality. Her visits are not doing you much good if they leave you in such turmoil. Unfortunately, we can't separate the emotional stress from the rest of our system. I am praying for them to come to an understanding but you need to think about you. You need support and help now not criticism. Perhaps one of your nurses could mention to your mom that any type of stress is really bad for you. Still praying for your strength and praying that you get the care needed quickly Gentle Hugs, Noreen

WONDERFUL NEWS Congratulations to you and welcoming fairy kisses to the new arrival

Hi- I've had the plugs for just over ten years with no problems. Since I have RA and am on meds for that, they've never none a lip biopsy. Several times discussing meds it's always the whole side effect problem - and it seems like they all could cause fatigue just what I need - NOT! Restasis doesn't always work fully for those who have the plugs. I use eye drops several times a day. I just found Biotene toothpaste at Walmart for dry mouth and so far so good. It seems to take forever to get an autoimmune dx. Just try not to think about it and address the symptoms that bother you as you can. Does your rheumy understand dysautonomia? It seems like every doctor I see gets that deer in the headlight / panicky oh no I didn't study look whenever I mention it. Noreen

de nada Someone on the forum had mentioned a protocol used by Dr. Grubb in which they took Adderall in the morning, Midodrine at noon and then every 3 hours. I had already been prescribed these meds so I ran that by my cardio and was okayed. Now that I think about it the change in the way I took the meds, not just the increase in the volume of water I consume daily, probably is responsible for the improvement in how I feel. Where would we be without each other?! I have a 14 yr old son so couldn't do the expensive juices. You probably know, at that age, they think a whole pizza is a snack take care Noreen

Nina- Wow! Take it as easy on yourself as possible. I am years behind on insurance paperwork because the worker's comp system and no-fault in NYS make it so hard. You have my utmost sympathy. Sending warm energy to get you through your class. Post and let us know you got home safely! Noreen

Angela- I am glad you are feeling better. Speaking from experience, though, now would be the time to overdo because we feel fine and we have things to do. Try to keep yourself in mind - remember oxygen first! (like on airplanes). If you haven't had luck contacting a social worker at the place your mom is at currently, try calling the state health dept. Ohio State Health Dept Nursing Assisted Living Programs. They should be able to give you a few in your area and, if you are feeling grumpy, you can complain about the facility not helping you with discharge planning for your mother by providing you with a list. Glad there is some good news and I hope you take care of yourself. Noreen

maxine- Goodness, that is worrisome stuff. I'm sorry, too, that it all brings back the pain of losing your mom and brother, too. My prayers for a lessening of your anxiety during this pre-dx phase. For me anxiety makes everything worse and you could use peace now. Blessings and gentle hugs, Noreen

Erika- Prayers for a speedy and uneventful transfer to the place and the people that are best able to help you. Gentle hugs, Noreen

I have the same problem with magnesium supplements. Flax seed I grind and use on top of yogurt or in muffins and don't have any problems that I have connected to its use. I take 4 coated Fish Oil capsules (2 Am and 2 PM) and don't have issues with it. Noreen

Hello- Welcome. I know just what you mean about feeling unable to think or that your brain is skewered after the flu. I had the flu in Oct and still keep having the bad bad thinking issues. I just upped my water to 90 ounces a day last week and that has a big difference. It might be worth trying a bottle of Gatorade a day for a week and upping your water while making sure you are getting enough salt. Hope something helps. Noreen

Thanks for sharing the things that help you. I might give the Odwalla a try next bad spell. For fatigue, I take 10 mg. Adderall. Really can't function without it. Noreen

Thanks for posting the link. The story is great and I loved the video insert of the POTS specialist.

Erika- My showering schedule is right on par with yours. However, during a particular bad spell recently I ended up going for 2 weeks without a shower because I couldn't get someone to be nearby. It is now something planned as it can drain energy for the day depending on oh so many factors. As someone else mentioned, I also sit in the shower and use a handheld shower wand. Noreen

Dani I have horrible problems focusing my eyes too. when you have been a bookworm all your life and can't read at all, it is the pits. I hope your spell doesn't go on too long. Noreen

Alicia- Don't worry about giving Midodrine a try. My migraine history goes back almost four decades and I have found no correlation between my use of midodrine and migraines. However, there has been significant decrease in headaches caused by head striking floor (just looking for the humor here) Water, water, and more water. And, if we are going to try for the things that the hospitals said to go for after 10 days of no BM - I eventuslly had my husband bring in Dannon Activia yogurt. The prune juice, coffee, and enemas, weren't working but the yogurt did. I tried it because I had a friend with a problem who swore by the stuff. I would think it worth a try for a couple weeks. Good luck, Noreen

Tammy My thoughts and prayers are with you. Losing our best fur pal is so very hard. May warm memories of him brighten the coming days. Noreen

Hi Persephone- You have my sympathy. I just went through a five month patch of migraines 3 times a week. My pain is always on the right side in the temple to just over the ear. I could not do anything. I would get up for 20 minutes of housework andgh my join da back to bed. The major reason why I am still a newbie although my join date is 2 months old. I can'tuse the computer at all with a migraine and when you add the problems with focusing due to autonomic dysfunction it is all such a joy. I take Topamax 100 mg daily as a preventive. That dose is very low but because I keep complaining about fatigue they do not wish to raise it until I am seen at the academic hospital for a neurological workup . this drug is a preventive. It helps with the duration of each migraine. I have had one last 5 days. I take Fiorinal for the migraine itserlf. Best wishes for an end to this for you. Noreen

Erika- Gentle hugs to you. I just read of your latest trial. thank goodness you have a good doctor and a wonderful daughter to chauffeur you. Attached is an article from Medscape on Autonomic Neuropathy. The spinal tap will show an increase in CFS protein and CFS enolase if it is pandysautonomia. Sorry I'm too new to figure out how to attach the article. Here is the link. Any problems, post and we'll figure something else out. http://emedicine.medscape.com/article/1173756-overview Prayers and love winging your way to envelop you in a cocoon of healing, Noreen

Frank- Sorry you had to let go of your truck. It might seem lke a small thing to some but this illness has taken so much that you are entitled to grieve for what was. I think you are blessed to have your best friend as your spouse Pets are the best. ,I'd be lost without my cat, Salem, who always knows who is sickest and needs him the most. Skritch behind an ear, hug your best friend, and know that you are living your life to the fullest. Noreen