we_don't_look_sick

Provigil is expensive. I tried it and learned if I ABSOLUTELY had to be awake for some event, it would work but I would crash terribly afterwords. At one point I could take it 2 days in a roll and feel alert but the third day I would miss work and sleep.

Then I tried only using it 1 day at a time. I would come home and crash immediately. The last time I tried it to wake me, I slept the entire time. I am not sure what it was doing to my system, but it was not making me awake nor alert.

I will try ADD med but I am prepared for it not to work. I hope it will but...

Buzzing sensations???? ROFLOL I never connected those sensations to dysautonomia!!!

I had my cell phone in my back pocket one day when I encountered a family member they were very annoyed I never answered my phone. I looked and had several missed calls, but the tingling sensation is something I am used to and didn't realize it was my phone vibrating. They laughed when I said I seriously thought it was just my hiney with it's normal tingles and pain and not my phone.

Now I have to have it on sound and vibrate because every tingle makes me check my phone. I am sure people think I am crazy when I look at my phone, laugh and put it back in my pocket!

Most of the time i just carry the phone because I seem to be loosing my hearing and I can't tell a call vibration from a tingle.

Thank you for all the input and stating how the medicine affected you. The last time I spoke to my pcp's nurse before the Dr came in; the nurse said insurance probably would not pay for Provigil (i have taken before) or adderal, etc. She was right, but it didn't occur to me to find out what the cost was and pay for it out of pocket. That sounds crazy, but that is how my brain sometimes functions; oh insurance won't allow it; so I can't try it.

I will remind the Dr of the NCS and request to try one. I think Provigil is stll expensive; maybe one of the older ADD meds will be less expensive.

I VERY much lose concentration and seriously struggle with finding the right word; even simple words.

also I saw in your signature, you were dx'd in 2008 but started symptoms at about 5 yrs old? i started fainting at age 6 and was just diagnosed april 2011 with NCS, 18 years of fainting and they finally put a name on it I am waiting on some insurance so I can be tested, because i have symptoms of POTS as well. heck, like most of us my whole body is messed up.

Interesting!! You are the ONLY person I have spoken with that started as young as I did! I passed out daily for a long time. Mom said my siblings would come home from school ready to eat; I would head for the bed. She said she had to pick me up from the floor almost daily, because I never made it to the bed before fainting.

Dr.'s did blood test, etc. I was put on 2 types of medicine for a year to clear 'it" up. If I continued they were going to do exploratory surgery, thinking something was wrong with my kidneys! lol Mom would not allow that and we just dealt with the fainting.

Also, I used to have a good appetite but within minutes of starting a meal; I had to lie down. The Dr.'s had no idea what was wrong; now I have read that many of us will feel faint becuase the blood flow is going to the digestive system. This is the same thing that elderly deal with; they are told to remain seated it after a meal!

I get muscle twitches when the D is low and also as I am taking the Rx Vit D.

I understand about losing faith in Dr.s.

He doesn't have to retest, a pcp or any Dr can.

I feel better taking Prescription Strenght D, the otc pills do not work. Right now I have Rx 50,000 4 a month and also I am taking gelcaps of 5000 IU vit d on days I don't take the Rx.

I agree it seems to help lessen the severity of POTS.

POTSMAMA; I did not know that about dysautonomia people having trouble bringing their D up! An endocrinologist apparantly didn't know it either.

I do not get thirsty dailly. I have to make myself drink something and if I do more than sip water; I get nauseous from the fluid. Occasionally, however, I will feel extreme thirst for water.

For people without dysuatonomia issues thirst is a sign the body is already dehydrating. I do not know for us if that is the case because I stay dehydrated.

Naomi why were you denied long term disability?

YES!!! I have found low vitamin D makes my pain worse & POTS/NCS symptoms worse.

I have been at 6; 6.5 and 7. I have extreme fatigue and more pain when the vitamin D is low. I have Increased heart rate & palpations.

I gave taken several Rx prescriptions of Vitamin D 50,000 IU 2x a week and other times the prescription was for 1x a week. I also have tried OTC and will say the capsules work better for me than the pill form.

I think someone with Lupus and Sarcoidosis have problems taking vitamin D but they need D so it would take a knowledgable Dr to help them.

Thank you Jen

It sounds like the Mayo Dr is the Dr that tried different meds.

Low Vitamin D causes lots of problems for me!! I have muscle twitching, prescription Vitamin D has helped with pain and fatiuge. I haven't read about it helping with muscle twitching but the potassium, calcium and magnesium could.

Do the ADD or ADHD meds help with your fatigue and making it thru a work day?

I have tried Provigil (lack of sleep was making me drowsy driving to work). The Provigil would help me thru that day, but I would crash and need the next day off work.

My brain fog is terrible. I have trouble finding the right words for common things. I will reverse the order of my words in a sentence. I am having a difficult time hanging on to my job. I can see difficulties I am having, I feel better if I can sleep all day! My weekends consist of sleeping all weekend to make it thru another week at work. Mondays, after being at work, upright and concentrating all day and the noise; I come home to ehausted to eat and sleep until work time on Tuesday.

What Dr's did you see to try ADD meds? I am seeing a therapist finally. Maybe she will be a starting point.