What is Psuedotumor-Cerebri
Idiopathic intracranial hypertension (IIH), sometimes called benign intracranial hypertension (BIH) or pseudotumor cerebri (PTC) is a neurological disorder that is characterized by...
Join Now
|
Getting frustrated.
|
Watch this |
| View More Posts Ignore |
Hey guys,
So, I had a few good days where I felt kind of like things might be ok for me. Then today and yesterday, it has been horrible again. Let me start of by saying that I have more than just PTC. I have chronic tietze syndrome which is a disease where the cartilage in my chest wall swells up and becomes very painful. I have hyperparathyroidism which causes all kinds of symptoms, but the only one that pertains to this story is that it sometimes causes my heart rate to go way up and I have PTC. (All of these have been diagnosed within a 1-year period, does it seem to anyone else like it might not be coincidence? I was totally healthy before this past year.) Anyways, tietze syndrome and from what I've heard, PTC both flare up during menstruation. Well, I'm premenstrual (PMS on top of everything) and my chest and head have been hurting pretty bad. Also, my heart rate has decided to do it's little thing again, so with everything together.. here's what's been happening. Every single time I stand up, my heart right hits about 120-130, my chest start throbbing and I get dizzy and lightheaded. It's so freaking awful that I have pretty only stood up twice today (to go to the bathroom.) Then to top it off, my vertigo is back, so even when I'm lying down (I've been lying in a recliner) it feels like I'm rocking back and forth and I really feel like I'm about to tip over. This ALL is starting to wear on me so much and I've been having really scary thoughts. I really feel like I should probably be seeing a counselor or therapist, but between the endocrinologist, NO, surgeon and medications, I am so broke. I've already had to cut out the physical therapist for my tietze. I have a consultation with my surgeon for my parathyroidectemy in less than two weeks with surgery probably early-mid December (unless PTC can cause a complication with anesthesia.) I am hoping and praying that this surgery somehow resolves everything. At the very least it should take care of my heart rhythm problems and my energy and an array of other things that are going on. Please pray for me! By the way, I apologize for the length and all of the non-PTC related stuff, but thank you for letting me vent. It's gotten to a point where I don't have much support with my illnesses because anyone that is close enough to me to know the struggles I go through is so close that they're also frustrated with doctors and misdiagnosis and the constant struggle this has been. Thank you guys. :D Posted on 11/08/09, 06:11 pm |
| 3 Replies | Add Your Reply |
| View More Posts Ignore |
Sorry you are having so many problems all at once. I know things must really be extremely hard on you right now. Remember that once the PMS is over you should get some relief. Hold on better days are coming. Just like you my daughter had a couple of good days and we were feeling really good about things. Then PMS hit and just about knocked her off of her feet (severe headache and feeling that her head was going to blow off of her shoulders each time she stood up). She is on the downside of the PMS and had a so so kind of day yesterday and she has returned to school today. So I'm praying things will go back to the way they were before the PMS. Praying for the same thing for you!!!!!!!! Keep your faith and be strong. We are always here anytime you need to vent. We all understand what you are going through and how down it can make you. Just remember that we are all in this thing together!!!!!!
Lots of Love, Jen 
|
|
|
|
||
| View More Posts Ignore |
Ashley
You may have seen my post the other day where I stated after starting diamox, during PMS I had horrible anxiety. I had terrible thoughts. It didn't last, I guess it took some time for my body to adjust. I have no other explanation for it, other than the extreme stress of everything. I still maintain it was the diamox. The good news is it only lasted through the visit from mother nature. One day at a time. you'll be ok! My hope is that you have secondary IH as well and as soon as you take care of the other surgery you will get your life back. Betty!
|
|
|
|
||
| View More Posts Ignore |
Well, I actually wound up in the hospital later in the evening after I wrote this and actually just got home. I started feeling drunk and was stumbling all over the house and things just really seemed not right. They did another MRI and another LP and this was a horrible experience. They tried to go in once and it hurt like hell, then they couldn't get to the fluid and I think I may have had an anxiety attack because I got real hot and sweaty and shaky at this point and the nurse was putting wet towels on my neck and head. Then they went a level lower and hit a nerve, but they got fluid. The nastiest thing about all of this is that my pressure was 18, normal. So at least the Diamox is doing it's job, but now I have this intermittent nerve pain for no good reason. Also, apparently I have the "veins of a 100 year old" according to a nurse. My IVs infiltrated numerous times and my veins blew another several times right when the needle went in. So, the result is that my hypercalcemia is causing a lot of the weird drunk-feelings and stuff like that. I'm eagerly awating the day of my surgery!!! I can't wait to feel young again!
|
|
|
|
||
| Add Your Reply |
