NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Help, I am not sure where to go from here…. › Reply To: Help, I am not sure where to go from here….
Hello, My name is Crystal.
I have Paroxysmal supraventricular tachycardia (PSVT), which is basically a rapid heart rate that comes and goes. When I am having it it is much worse upon standing and can make me pass out if I am not careful. However, valsva maneuvers work most of the time…. at least until I stand or bend over again. Occasionally I have spells were nothing I do will make it slow down. Those times I take a Xanax and that typically slows it down a good bit. Due to already having super low blood pressure I can not take beta-blockers to help keep it low all the time.
I have had headaches all my life and I have had diagnosed migraines since age 11. It was discovered at age 14 that I have a fluid filled cyst in my brain at the brain end of my brain stem. There is no way to remove it without MAJOR brain surgery and the doctors decided that it was not causing any pressure or symptoms, except when I have migraines. But once again due to the extra low blood pressure I can not take most migraine meds and the others are typically sulfa based which I am allergic to. So narcotic pain meds are the only option and only mask the pain until it decides to go away. Most of my migraines start at the base of my neck or directly behind my eyes with pressure and tightness. I am wondering if I have slightly higher ICP and that is what is making me more prone to these. I have 10-20 migraines a month. No one will do anything. They just throw their hands up and say they can’t help. Also migraines are worse when my heart rate it up.
My blood pressure is typically around 90/60, but will drop to 84/52 fairly regularly and can go as high as 120/84 without any reason that we can find. The lowest it has gotten (without meds) is 78/47…. which was weird and scary since I was still awake. No one seems worried about this, except me! This can cause me to pass out if it changes suddenly or spike a migraine if the shift is up.
I am allergic to SO many things. I have severe allergies and used to take allergy shots when I was little until they discovered I was reacting worse to the shots than to everything else!! I also can not take the flu shot and any vaccines make me extraordinarily ill for weeks after taking them. They always made me ill but it was much worse after age 11. I can not take zertec because I will literally not sleep for 2-3 days after one dose. Bendryl is the only thing that help but it makes me sleepy and foggy. So I take it at night and when I absolutely have to. Once again no one wants to help with this because the few meds they threw at it I could not take.
I have had stomach issues since birth. I have diarrhea sometimes and constipation others… with no real relation as to why. Oh, and I am hypoglycemic… but thats just mentioned in passing by docs. I keep glucose tabs with me all the time!
I have burning, tingling, numb, and vibrating sensations in different part of my body at different times. Anyway… any thoughts will be greatly appreciated. I am lost and do not know where to go from here. I do not have insurance at the moment so choosing where to go next is very important. I have also started having some problems with memory which is worrying me ALOT.
Thanks Hi Crystal, I was looking over your symptoms again (I’m a bit OCD. ha). It is impossible for me to know which symptoms are from the cyst near your brain stem, when when I look at all of your symptoms together, the one thing they share is possible mast cell disorders. Mast cells degranulate and release some powerful chemicals in the body which can result in BP drops (even shock), allergy sensitivities galore, organ involvement, skin involvement, IBS, and nerve involvement. You have so many of the signs and symptoms, and we’ve found that EDSers are more prone to mast cell disorders (big time). Did you read The Driscoll Theory? Some of us have a bit too much pressure on our brains, too. I think it would be worth your time and $$ to see either Dr. Castells or Akin in Boston about the possibility. They will look at your records and symptoms, then consult with you on the phone to start. How great is that? Xanax is a benzidiazepam which helps control mast cell degranulation, but cromolyn sodium may just turn your life around, truly. Will you check into it and let us know? Big hug, 🙂