briarrose

I take Imitrex for my migraines and it works wonders, usually. I went to the neurologist today and he told me that some of my visual problems are do to painless migraines. I hadn't ever heard of that before. He said sometimes they come on before a traditional migraine or they just last for about 20 minutes with just visual disturbances.

I was doing some research on this subject and came up with this recommendation Writing a letter or making a phone call are two of the most powerful actions you can take for pursuading a politician to take the action you want taken. Writing a letter is the most powerful. Politicians aren't always responsive but, if you want them to do something, you've got to communicate your desires to them. It's related to "you have a better chance of getting a "yes" if you ask the question. If you write a letter, it will be noticed. If several people write about one issue, politicians pay attention. If a lot of people write about one question, politicians pay a lot of attention. Writing a letter is one of the most effective actions you can take, even more than calling on the 'phone and way more than sending an email. When did you last write? It's easy! In most cases a short letter, making one clear point, is best; please see "Dear Legislator" and "Writing a great letter to the editor" below. Who should you write to? That depends on the issue and who can do something about it. Choose your target because you believe there is a good chance of your efforts making a difference. In addition, a letter to the editor of the local newspaper is always helpful. Even if you're not a good writer, your letter notifies the editors about a public concern. If a newspaper or radio station gets several letters on one topic, you are likely to see yours in print of hear it discussed on the air. Always include your mailing address and telephone number in every communication (even electronic ones). Legislators use this information to verity that you are a constituent; newspapers may use it to verify a letter's authenticity. My thoughts about all of this is, we should all write letters to each others politicians OR come up with a letter for each person and send to EVERY politician What do you guys think?

Angie I too had a problem briefly with my insurance company. They forbid me to get the medication from the pharmacy and give it to myself. However they will let me go to my doctor's office every week for the injection. Dr. Grubb's office should be able to help push it through or your primary doctor, stating that it is necessary for her condition. Don't let the insurance company put you off, talk to supervisors or threaten to sue them if anything happens to your daughter while they are making you wait, that should speed them up some. I didn't personally talk to my insurance company. My doctor's office fought the battle for me and won the same day. Medically necessary for the rare condition that we have. steph The epogen (procrit) has helped alot by the way.

Lorrell Your welcome! I'm glad that someone can get use out of some of the things I find I wish we could help Bren though, she is a very good friend and I kind of feel helpless for her, sorry. steph

viral rashes are more often symmetrical and everywhere. http://www.medicinenet.com/Rash/article.htm http://www.pharmj.com/Editorial/19990313/e...nreactions.html

Thx for this one too. I went round and round for over an hour last night trying to get my seating. I have never struggled before to get my seat, this is the first time and probably the last time I'll fly United.

Thank you Bren! Cute Avataar

Thank you very much Michelle, that definitely helped

Thanks Merrill and MM. I had already printed all the weblinks from dinet that would open about 3 days ago. I'm still wondering at what point they add or change your diagnosis.

It's actually funny that this is posted because I typed this exact topic out yesterday with the same question. I have wondered the same thing and have the NDRF handbook but am wondering at what point they make the jump from POTS to PAF? I'm starting to wonder if this would be my severe hypotension problem?

Welcome to this board! I second everything Morgan said. Many people have multiple speciality doctors depending on their symptoms and needs. If your looking for a specialist in your area, it's best to look under physicians on this board or NDRF, probably about the same. Everyone here is great, understanding, friendly, supportive and overall just a second family

Julia It depends on the reference range to your values. That would depend on each individual lab. Sorry I'm not at home to link my favorite references but see if this helps http://web2.airmail.net/uthman/blood_cells.html

Julia I take Synthroid too and it takes many weeks to make a difference with increase. I wouldn't worry too much about possibly taking a double dosage. However you should think about getting a pill caddy as it really does work. I too went through a period of time where I couldn't remember if I had taken my meds or not, ok confession, even today I couldn't remember by my sun - sat pill box told me steph

How did it go?

My normal temp is 97.6 too. When I'm at 99, I feel really bad. I can be lower than 97.6 though.

Well I don't make things up! And as much as I hate our current president, I wouldn't finger him for something he does or doesn't do. What I said earlier was based on something I read last year, I will continue to look for the article. Here is a website that explains the Orphan Act http://www.fda.gov/orphan/oda.htm How does an illness make the list http://www.fda.gov/cder/handbook/orphan.htm What I'm still wondering is who shot in the dark and came up with 800,000 patients with POTS? It's funny, but I only know of a few in the state that I live in. It's not something that many doctors I have spoken with are familiar with. I think they are speculating that there might be a possible 800,000 patients, that haven't been diagnosed. So how many have been diagnosed? Should we call Dr. Grubb and ask him how many patients there really are?

Great idea! I think something that people can maybe ask us about or make them aware. I second Stacey But you look so Good or you don't look sick or Awareness of Dysautonomia

I believe he was miss diagnosed with Shy-Drager at one point in his life, but I believe they came back later and said no he did not have shy-drager.

If I'm not mistaken President Bush took POTS off the Orphan list.

I was wondering about Joey Harrington (Quarterback) for awhile and his tachycardia condition. He had an ablation though.

Good luck Julie I know that every little bit helps! I hope that someone on this forum used the information I listed on how to reach their own State Senators, please it will take all of us to write. Remember the squeky wheel gets the grease. Are you going on tuesday the 10th or wednesday the 11th?

I think we all try to figure out what triggered this. Some people are certain that they started immediately following a certain event. For me, I'm still trying to figure it out. I think it was a combination of factors. I can tell you for certainty that I use to pass out while I was pregnant, too warm or stood too long in lines. I couldn't work in the yard anymore because everytime I did it would make me very ill. My doctor just passed it off as standing up to quick or being dehydrated, I told him I was well hydrated and stood up slow but it would happen anyway. For over 10 years now I struggled with joint pain, muscle spasms, headaches and a few other problems. At the end of October 2001, I received my flu shot through work and was sick within 20 minutes of injection. My feet went numb, I had severe pain down my spine, etc. I was sick for 3 weeks when the tachycardia started. I was admitted to the hospital and they ran several tests over 3 days. The doctors told me that they thought the tachycardia would pass within a week. A month later they finally had to put me on a beta blocker because I couldn't stand up, let alone sit because my heart raced all the time. I've always been cold, as far back as I can think. Some doctor's say that POTS can be hereditary. I can't remember when the numbness started exactly, but I remember having many problems after having my hepatitis series injections. I just saw a neurologist last month and will have nerve conduction tests in 3 weeks from now. I have lost some feeling from my elbow to my finger tips. Mighty Mouse is right in what she said about many of us and no two of us are alike. I'm happy to talk to you anytime if you need. Just stay diligent and aware. steph

Hey Barbara Welcome to this forum. I'm glad that you stumbled onto here. You have many of the same symptoms as I do but my POTS wasn't caused by trauma. Have you had a tilt table test yet? If you haven't, I would ask your cardiologist or primary care doctor to do one for you. Tell them you suspect that you might have a dysautonomia called POTS and ask them if they're familiar with it. Some doctors know very little or nothing at all about it. Also, don't let them jerk you around. Doctors tend to tell you that it's in your head, simply because they can't admit that they don't know what's wrong with you. steph

Don't feel bad, really. I was turned down by Vanderbilt last year too. I think they are looking for a very specific criteria. I was accepted into 2 of the NIH study's. One was a study on medication and I turned them down because I already know that I don't do well on that med. The other one is unfortunately on hold until next year. Don't give up! Just apply for other studies. steph

I have enclosed a website so that everyone can find their senators and other politicians according to their state. Please write and encourage them to help in our behalf. http://www.senate.gov/ http://www.house.gov/ http://www.house.gov/writerep/ http://www.nga.org/governors/1,1169,C_SEAR...RCH_GOV,00.html (you can search for your Governor on this site but email might not be available.) thx steph