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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Newbie looking for advice about symptoms and appointments

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Newbie looking for advice about symptoms and appointments › Reply To: Newbie looking for advice about symptoms and appointments

September 7, 2013 at 9:42 pm #4308
JenB
Participant

Hi Lab-Scientist-Lady!

I’m sorry for the delay in getting back to you. Goodness gracious it has been a crazy week! Well, as I had mentioned before, my mother-in-law had brain hemorrhages. My husband decided to fly out to Maryland to see her. We had bought his ticket and were prepping for him to leave Monday morning. The Saturday evening prior to that I ended up having a massive anxiety attack. It came on so suddenly. I was reading a book and then BOOM convulsions, nausea, vomiting, the works. I became terribly afraid of what would happen to me if I had to deal with that all by myself for a week so I bit the bullet and decided to go to Maryland with my husband. Of course, just a handful of hours after we had purchased his ticket, the price for my ticket was more than double! Ack! After that I had to take a second dose of Ativan (since the first one had been thrown up already) and melatonin to attempt to knock me out or at least relax my muscles enough to calm down the attack. I was finally able to get a little rest. The Sunday before the trip was spent trying to find ways for my cats to have enough food and water because we were not able to have someone come in and check on them each day. I was terrified that my 18 year old cat would die from the stress of being alone. Fortunately, she made it through okay!! Phew!!

The trip to Maryland was bittersweet. The flying and dealing with various people and nurses went well (take that social anxiety!) but my mother-in-law had definitely suffered some damage from her brain hemorrhages. She seemed eerily similar to the dementia I had before I started the Zyrtec/Zantac routine. She couldn’t connect words, remember the names of things, she would go in and out of lucidity, etc. When describing who I was to a nurse, instead of saying “This is my son’s wife” she called me “This is my husband’s daughter.” She called a chair a “table” and lots of stuff like that that clearly shows her brain is not communicating properly. She improved each day and you could tell when she was starting to fade again because she would start to get tired and confused. If she was fully awake and alert, she functioned much better. She developed several clots in her leg that leg to a procedure to put a filter in a vein to prevent the clots from reaching her heart, lungs, or brain. She passed out one day after trying to stand up and I noticed that she was having POTS-like symptoms. Her BP remained on the lower end of good and would raise when she sat up and then drop when she stood. Before she fainted, she had just taken off compression stockings and got up off of her hospital bed quickly so I think it was all just a POTS-like BP drop. Her tests, physical therapy, and echocardiogram all looked good so there was no evidence of anything else wrong in that regard. The doctors and nurses are very very hopeful that she will make a possibly 100% recovery. I think blood “just” pooled on her brain instead of causing any actual damage to tissue. Her stay in the hospital kept getting prolonged day after day so I unfortunately wasn’t able to see her actually leave the hospital but she is home now. I took diligent notes when my father-in-law was absent so he could have the peace of mind that all info was covered and he knew what was going on. I stayed by my mother-in-law’s side the entire time save for when I was pulled away to get food or forced to go back to the hotel to sleep. I had a bad insomnia night that caused me to be up for over 30 hours straight only to follow by a 14 hour pass-out session the next night.

My husband and I flew back home on Friday and I am insanely wiped out. I am in so much pain and so tired. I’m mainly relieved that my cats are okay. I would be devastated beyond belief if something had happened to them. Now I am simply trying to get whatever recovery time I can before another painful 3 hour drive to and from St. Louis for my appointment Monday morning. Hopefully the neurologist will be nice and helpful. And fingers and toes crossed that the 6 hour total drive won’t cause weeks of pain like the last one did. Yeesh.

I’m sorry you haven’t been feeling well. 🙁 I do indeed get absolutely awful headaches. There is the constant everyday types, then flashes of intense ones or annoying ones, the migraines that last awhile, the ice-pick ones that feel like they are stabbing through my eye or temple, and some other types.

I can crave salt too. I can bounce between craving salt and craving sugar. I try to be really careful because I will feel super sick if I have too much of either one.

I hope your upcoming endocrinologist appointment will go well! I’ll be thinking of you and sending good doctor vibes your way!

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