icesktr189

I was great with my POTS before pregnancy, bad the third trimester, great post partum and horrid 6 months after until now. Of I was completely breast fed, never had formula and my health is terrible. I had chronic ear infections, UTIs, strep infections, ect. growing up. I was constantly sick.

Oh my credit is shot from getting sick at 18 and letting credit cards and other bills go. Also never ending student loans. Haha just read the grid rules, and if you are between the ages of 18-44 AND can speak English or literate, you are not disabled? Thankfully I know plenty of people my own age on disability or I would have no hope lol

Jaquie- Did you have a reconsideration stage? Some states dont and it takes a lot less time. My dad didnt have one and from the first dsy he applied to his trial date was a little more than a year. But if you add it reconsideration, its at least a two year process.

yeah it usually is a year or longer, but i have heard of people getting it in ten months. Also they have OTR (on the record) where you dont even need to have a court hearing. Honestly to keepmsane during these last 11 months, i have been building up my medical records. I havent had so many appts. in one period before, so its been crazy, but a good distraction. I am hoping to at least have a date set by Christmas, but i know it could take until March of next year :/

Nope, no date yet, but my lawyer did say that the earliest they give you one is 6 weeks before the trial and some wait to tell you only 2 weeks in advance... :/ Have you heard anything yet??

Thank you everyone! I have seen dead bodies before, but not someone that young die in a horrible accident. I see Dr Wolf, who is a neuro opthamologist. Hes def. does not have good bedside manner, but hes a pretty decent doc and there is not many neuro opthamologists to choose from. He told me my eye`s optic nerve is very small and "bumpy"...whatever that means. I have another MRI set up so hopefully it yeilds some answers.

Took some much needed time away fromthe interent, including my beloved facebook. Last month I was in a car accident with my daughtrr and mom, and we saw a motorcyclist fly through the air and die. It was very traumitizing and made me go into a huge flair. Im slowly working past the issues, but i think its going to take awhile to get over it. Went to my neuro opthamologist appt. and they said im going blind in my right eye. i need additional tests and another MRI, but im just not in the mindset to do it right now. I should have my disability earing hopefully coming up in te next month or so, but after all tis going on, i just csnt even look forward to it. Sorry for the depressing post, its just been a horrid couple months and im so looking forward to Christmas and starting clean next year!Hoping everyone is doing well

I appealed my denial in Janurary of this year and nothing yet. Its been 11 months since my second denial and im so over all this. my lawyer said it could take up to15 months and then ANOTHER 3 months after to grt my decison. Its been almost two years since i applied in Janurary of 2011. The whole thing is ridiculous and they really need to figure out how to speed up this system.

It sounds like it's dropping your bp too low. I have to take midodrine with it or I start passing out...I have very high adrenaline levels.

LDN doesnt boost nor supress, it regulates. The insomia and side effects go away after a couple weeks, but if you change doses frequently, it will take longer. Even though its helped my mom with her crohns, it has does nothing for her POTS. The only thing i have ever heard its used for is autoimmune issues. Some say it helps pain because it can give you a sense of euphoria in the very beginning. issie, Dr. G is looking into MS so i should know soon enough!

My Mom has been on it for a couple years now (she has POTS and Crohns Disease) and hasn't had a single flair since. Her best friend has MS and went from being wheel chair bound to walking and symptom free with no new lesions. It will only help if you have autoimmune issues. That is why some POTS patients don't see improvements is because it's not autoimmune related. My brother also takes it for his ulcerative colitis and has no symptoms either.

I have severe blurry vision to the point that my vision went to 20/60 in the eye. Also have pressure and a ton of blind spots. i had color issues, where i could not see red or green, but its comin back. Best way to describe it is that i feel like my brain is just shutting the eye down slowly. Also have bad focusing problems...if i see a movie in the theatres or read a book, it takes about an hour after for that eye to refocus itself. Dr Goodman found it by turning off the lights in the room and using a bright light back and forth to each eye. He said the right one dialates when light hits it, instead of constricting. Hey Arizona Girl! He did two different tests of cortisol and catelchomines depending on my symptoms... Two weeks out of te month i ave severe low bp with no adrenaline and the other two its sky high. Havent done the MRI yet, but ill post the reults when i do

Im in the Chandler area and see Dr. G too

oh ps,:if you havent heard back from me in awhile, let me know becausesone of my messages arent sending out

First let me say sorry for those who wrote me messages that i havent replied to! I was in the process of moving and havent had internet:/....so very sorry! Well saw Dr. G and confirmed my POTS diagnosis. I am hyper 2 weeks out of the month, and very low the other two weeks. However, i told him about my eye problems, he noticed issues and sent me to an opthamologist who diagnosed me with optic neuritis in my right eye. Couple this with two positive ANAs, and i dont think there is much hope that there isnt some type of autoimmune disease. Im getting my MRI done next week. Havent had one in a year and a half, and when i did i refused imaging, so im kind of worried about what they will find. Wish me luck!

haha soooo true issie!!

For me, its like buying a used car and it having something wrong with it and the dealer doesnt tell you. Later you notice the problem and they say they didnt think it was a big deal. I dont think its right that they hold back info because they dont think its a big deal at the time or dont want to scare you. The patient shouldnt have to find out from their medical records because that just adds more anxiety and confusion.

Also after doing tons of research, most doctos will almost always say its not a big deal. Most of the patients who had to have theirs removed, had multiple doctos tell them is was nothing to worry about, when in fact it was causing issues and had to be removed. You wouldnt believe how many people i found with these cysts that are experiencng low bp, passing out, tachycardia, pretty much a ton of POTS symptoms. Im not set on having it removed, but it would be nice if my old doctor would have at least mentioned it to me. Its like my brother... he was having stomach pain, bleeding ect and they kept on insistng it was just IBS, until he spiked a 105degree fever and later found he has ulcertive colitis. Im sick of the non chalant attitude i constantly see.

Problem I have is its now over 1 cm, which means it went from 7mm to 1 cm in a year...Im seeing Dr. G next week and ill talk with him. I know there are risks for surgery but there are also risks keeping it in there. Im upset because there were specific symptoms such as seeing a blinding white light and severe migraines, that with this diagnosis should have been mentioned. I guess im just upset that they fail to mention these things at all.

Its mainly a problem because the cyst pushes on the gland, creating an imalance of hormones. It can also put pressure on the optic nerve and spinal column creating a build up of fluid. I have read cases where people were hospitalized because the fluid was too high and had to be shunted....the crazy part is they werent even big cysts. Some where actually smaller than mine.

The funny part is i didnt even look at the image,he wrote it down! lol Those things can be dangerous if they keep growing. ugh i just an so annoyed because i have severe balance problems, vertigo and my sleep pattens are crazy.

Last year my old neuro had me do MRI. Well Dr. Goodman wanted to see it so I picked up all my records and read through them.Guess my old neuro forgot to mention to me that i have a 8mm pineal cysts. Normal if they are under 5mm with no symptoms is not a big deal, but anything over thatwithsymptoms should be checked on. They can cause so many problems by pushing on your gland like dizziness, vertigo,memory probelms, migraines,ptosis, adrenaline is ect. Which I all have...I dont want to be dramatic, but when I am coming into him complaining of all these symptoms and hefind a fricken cyst on my pineal gland, i would think he would say something. I of course googled, and found a 17yearold girl who had a cyst smaller than mine who also had POTS. She had hers removed and her POTS went away! This MRI was done over a year ago, so i dont know if it has grown or not.

I recieved the epidural also and felt very dizzy and VERY hot. However they said that was common symptoms in labor. I did horrible in my third trimester as well. My heart rate was actually higher than my daughters was during labor...the nurses were pretty shocked lol. I actually did great after birth but slowly started declining. By 6 months pp I was bed bound. Going into my pregnancy my POTS was very mild.

Also i think it lasts only 15 mins... thats why they give two shots to give you 30 mins to get to a hospital

Im sure it wouldnt feel too great for anyone, but if you are having a true reaction, I think worse POTS symptoms would be the last thing on your mind. I have one too but i hope i never have to use it!