dawn

Paige,

Don't feel like a failure. I have thought about admitting myself many, many times.

My doctor, family and friends have all discouraged me. I am going back to see a psychologist who treats people with chronic illness, I saw her last year, didn't seem to help much.

I totally understand. I feel like a burden everyday. Even made my husband quit his job because I was afraid of being alone. He has to start working again and all I have to do is think about it and I am in a panic.

I have tried the SSRI's, prayer, healing ministry, psychotherapy. I feel like I'm in a pit and can't crawl out. I have to force myself to get up and not sleep all day. People ask "what brings you pleasure?" It's sad but I can't think of anything. Don't feel alone.

Feel free to email me if you want to vent.

Dawn

I was a nurse for 29 years. A school nurse until last October. I was there for 10 years and LOVED my job.

Now. I'm pretty much homebound. Watch the dust collect on the furniture. I have no energy. Last year I did alot of scrapbooking but now don't even have the energy for that.

I am pretty good at gameshows.

Dawn

Morgan,

It's sick but it does make us feel good to get an abnormal lab. I know the feeling. Usually it's "well your labs look fine" and then they give you the I think you're nuts look.

Sorry to hear about the fainting. I fainted at my son's BD party when he was about 12, there were 8 boys over. Ended up in an ambulance. They were all peeking in the window of the bedroom when the first responders came. Felt like a fool.

We're the MOM we're supposed to be OK.

Take Care,

Dawn

I love the show House. I'm going to try to find out how to contact them and see if they will do a patient with POTS. It would make everyone more aware of what we go through. How we are usually first labeled as psychiatric patients.

My sons best friend does the audio for a new show called Bones on fox. I'm going to see if he can get me a connection.

I'll keep you posted and if I get an address I'll pass it on so we can all write.

Dawn

Happy Sunday Everyone,

We're having 76 degree weather here in Wisconsin.

Anyway, I see the doctor again on the 10th, he's always willing to let me try any medication that I come up with.

I have been on several SSRI's in the past 13 years. Haven't taken any for 2+years.

I never felt like they helped (I did gain 40 pounds). Which dropped right off when quit them. I have tried Prozac, Effexor & Lexapro. Anyone had any positive experience on something else? I need something to help my depression, lessen my anxiety and give me some energy. I wish there was such a pill

Anyway, any input would be appreciated.

Dawn

The last TTT I had, I just refused to have the injection. They got enough data from the test. Don't be afraid to say "no." I had never met his doctor before but he said "OK." and that was that. It's not worth the stress thinking about it. Just make your decision and stick with it. I have had the same experience at the dentist. They use carbacaine now and I have not had problem.

Good Luck.

Dawn

Thank you for all your responses. So many good suggestions. I did just purchase the Claire Weekes CD on Panic, she did a radio show that they have now put on CD. It was very good. I have only listened to it once, will need to listen several times to "get it."

Thank you all so much again.

Dawn

Every morning. I take Prolisec OTC the minute I wake up. Usually fall back asleep then feel fine. I had an endoscopy and it was fine. It seems worse when I don't get enough sleep.

Dawn

Hey everyone,

I remember the "good old days" when I couldn't wait for everyone to go somewhere so I could have alone time. Now I panic when I'm left alone. I'm making myself sick over it. I"m afraid to shower (what if I faint?) I'm afraid to go upstairs (what if the tachycardia doesn't stop?) I notice every skipped beat in my heart. I pace around the house. Watch (try) TV. Call friends. The whole time I'm in panic mode.

It is ridiculous but real.

Wondering what you all do to cope?

Dawn

HI,

I have had a reaction to the CT contrast which contains iodine. But, the MRI contrast did not cause any reaction. I had them slide me out of the tube, I had them inject it as I was sitting so I felt much more relaxed "in case I had a reaction." They were very understanding and nice.

It's rare to have a reaction to the MRI contrast so don't worry.

Dawn

Ernie,

Thank you for the update. Morgan is in my thoughts and prayers daily.

Dawn

Good for you!!!!!!!!!!! Like my cousin always says "when the pain of staying the same becomes greater than the pain to change, people change."

Keep up the good attitude, it makes all the difference in the world. I try to crank up my sense of humor. So we faint, we panic, we vonit. The other night I went out to eat with 3 of my friends I haven't seen in months- major panic set in, I ended up with syncope lying on the sidewalk outside of the restaurant for 1/2 hour. People walked by me thinking I was drunk, I just commented "the marguaritas are wonderful."

Don't be discouraged by a setback, like everyone, we'll have some days that are worse than others. Keep up the good work.

Dawn

Morgan,

Blessed are you going in, blessed are you coming home.

Dawn

Jan,

I think I would look for a compassionate oncologist, there are some. When you have a battle to fight like Jeff does it can make all the difference. Maybe you can ask some people who have had chemo who their treating oncologist was. You need support, not someone who is negative.

I will be praying for you both tomorrow night.

God Bless and call upon the angels.

Dawn

I'm planning a trip with my 15 year old son. We live in Wisconsin and are traveling to Seattle June 22nd. Anyone had the "train experience." Just curious. We have a room

ette. I just worry about everything.

Dawn

HI,

I carry a misty-mate or a spray bottle with me everywhere and spritz myself constantly.

If I'm really warm just getting your hair wet really helps. Sometimes I just pour a bottle of water over my head. Feels good.

Dawn

Carbacaine works for me. Not enough epinephrine to give you symptoms.

Dawn

HI,

When I was younger and the boys were little, we would rent a motorhome for a couple weeks. It worked out well. You can rest when you need to, and if they wanted to do something I just stayed back and napped.

Now this summer I'm planning to go to Seattle with my 15 year old (we live in Wisconsin) we are going by train. I got a sleeper room. It's only a 2 day/night trip, hope it works out Ok.

Good luck.

Dawn

I totally agree with Miriam. The attorney I saw was very supportive and said in filling out the forms "it's all in the wording."

I applied in January, they sent me to see a physician at their cost a couple weeks ago, otherwise I haven't heard anything. I know POTS isn't on their "list" but inappropriate sinus tachycardia is.

I know how frustrating it is. I'm expecting a denial anyday. Then the appeal process, fortunately if I need to go before a judge my physician said he will be there. He has been so supportive these past 10 years. He's watched me deteriorate.

Good luck on your sleep study, been that route. Try to forget about your frustrating day (I know easy to say). They let me watch TV when I did mine, I told them that's what I do at home and she said that it was OK, they turned it off when I fell asleep.

Good Luck

Dawn

Chrissy,

One of my first symptoms of POTS was that my left pupil would dilate at times. As stated in previous posts, the ANS controls the pupils so for them to constrict or dilate abnormally is a common symptom. I can actually tell when my left pupil does this as it feels dry and is sensitive to light. Another strange symptom

Dawn

Hi,

The last neurologist I saw, suggested I elevate the head of my bed on cement blocks when I sleep. He said it should help with the early morning tachycardia. I thought I read somewhere this could cause blood clots in the legs.

Any input would be appreciated.

Thanks.

Dawn

As far as I know, Reglan is used for stomach emptying. My internist and GI doctor were not fans of reglan. It can cause tremors.

Zofran 4mg orally has worked well for me when I have severe nausea. I take prilosec OTC every morning. That helps alot because it turns off the acid producing pumps in your stomach.

I know how awful nausea can be. Good luck.

Dawn

Stacey,

I had a big fibroid and was anemic for years. The best thing I ever did was have a hysterectomy. Absolutely no regrets. I was loaded with IV saline before and after surgery. Recovery was uneventful. You feel rough for a couple days but not much worse than usual. I am 49, had the procedure when I was 39.

Good Luck on whatever you decide.

Dawn

The ICD-9 codes my doctor uses are

337.1, 785.00, 485.00

Don't know if that helps???????????

Dawn

Morgan,

I am so sorry. What a frightening experience. I have had full blown panic attacks and let me assure you that you can speak and yell and you certainly don't seize!!!!!!!!

You poor thing, how much more can you take. I wish I knew of something to say that would comfort you. Close your eyes and imagine me giving you a big strong hug.

Dawn