What kind of treatment are you on with your Neurologist? I'm being treated by a Cardiologist. But my daughter has been seen by both a Neurologist and a Cardiologist. I'm thinking about taking her back to another Neurologist. Any idea what kind of treatment differences I can expect?
Her symptoms could be mostly related to orthostatic hypotention/dysautonomia, but I think it's more likely that this is just another symptom. Has she had a cortisol test? Has Addison's Disease been considered? How is her appetite?
i have lots of sympathy for what you are going through. i have been having similar problems with my daughter about the same amount of time.
some things for you to consider. your daughter's symptoms sound a lot like Chiari malformation. this is one of those brain conditions that the specialists argue about. some Chiari malformations can be very subtle and can only be picked up by a neurologist who is specifically looking for it. you might try to research that. good luck. rbird
Have they done an MRI of your daughter's brain ?
Yes, they have done 3 MRI's of her brain (1 specifically of the Pituitary because it is large & globular but 2 endos say that it is fine), 1 MRI of cervical, 1 MRA of brain, & 1 MRA of cervical. Several doctors have looked at her scans and all say that it is fine. You may look at my photos if you clik on my member name.
I looked at your pictures. i am by no means an expert, but I did a lot of research on Chiari because I thought my daughter might have it. there are experts who believe that a Chiari is basically a crowded brain. they look at the angle of the tentorium and to my very untrained eye, hers looks a little crowded. I found a website that showed a picture of a normal brain next to a chiari (and of course I can't find it now) that helped a lot. a lot of the information says that chiaris are often missed unless they are specifically looked for. some doctors categorize a chiari 0 that other doctors don't recognize.
Like I said before I've been through a lot of the same sort of stuff with my daughter. you get tired of being told that nothing is really wrong & sometimes that they will outgrow it. I was actually excited Friday to get some lab results back that have some abnormalities. I told my daughter that I had good news = something had come back abnormal!!! we'll see what the docs say this week. good luck. rbird
I know exactly what you mean. We are disappointed whenever tests come back normal. We can't fix the problem until we know what it is. I also considered Chiari seriously for the same reasons you noted. I sent all her info to a dr in Texas who treats Chiari. The nurse called me & wanted her to come in but would not state that dr saw MRI or thought that could be Chiari. It is an 8 hr drive to this dr. I wanted more confirmation before going. We may still consider this. Thank you for your help. What is your daughter's issues?
I started thinking about Chiari because my daughter had terrible headaches. However they are not in the base of her skull. Increasing her fluid, salt and giving her Florinef seeemed to help those problems. her main problems right now are fatigue, mental fog,& GI symptoms. when I get to my other comoputer, I will see if I can find the sites that I used. a Chiari organization gave me the names of some doctors who might look at the MRI over the phone. I'll try to get it to you today. rbird
Thank you. We are in Louisiana and it seems that the doctors that I have found are all in Northern states, no one anywhere near us. If a doctor looks at her MRI's and believes that it could be Chiari 0, then we would be willing to do what we have to. But I'm not going that far away without some reason. Most doctors look at her test results, look at her briefly and say she's fine. They spend a whole 5 mins on her and send us away. I cannot afford to expend the amount of money needed for travel to get more of this response.
Wow--her symptoms sound like me--but she's so much younger than me. Some of mine have resolved somewhat, maybe from B12 shots. Neuro found I was VERY LOW in B12. Vision problems much less often;tingling and nausea less. Still dizzy/lightheaded & headaches, esp. base of skull. I do better w/less drugs, not more, so down to only BetaBlocker for Tachy. For headaches Neuro suggested Butterbur, a natural supplement--just started--takes 2-4 weeks to help.(If you try PLEASE check w/Drs. :)) As well as controlling environment such as heat/humidity it helps if I eat mostly simple, unprocessed foods, no soy, sulfites, etc. I see a definite difference in tingling, etc. I really hope she improves--I had a few symptoms w/adolescence and then many years of good health. Hormones play a big part in this, I really believe. Best of luck! Delina aka DysMom
I just read the later posts--I have the heightened sense of smell, too. My DH (dear husband) says I could solve crimes w/my sense of smell. I'm not sure if it's a curse or a blessing--but I did detect a tiny gas leak at our church last year! Noone else could smell it! Delina/DysMom
So the big question, has your doctor given you a diagnosis or are you just treating the symptoms? We still have no diagnosis. Just Orthostatic Hypotension as another symptom. I know that her B-12 was normal. The only meds she takes is Levsin for nausea & over counter pain meds. We just went to refill the nausea med & we were told that it is discontinued. It is the only thing that worked for her nausea which she feels is the worst part of all her symptoms. Migraine & anti depressants either did nothing for her or made the headache worse. And nothing else has been tried since we have no diagnosis. Her headache has never left her since Oct 4th.
Try the World Arnold Chiari web page. they have a list of doctors. Good luck
sorry I didn't post back--got 1st grandchild, then left on vacation! I was diagnosed at Shands UF w/dysautonomia--non-specific cause, with hyperadrenergic responses. Sudden onset after surgery, but had similar symptoms at least three times before--age 16-18; age 31, after C-section; and once after a bad case of flu. Never treated successfully before. Had been on Toprol and Florinef--no help. Switched to Nadolol for the tachycardia--worst symptoms. See a neurologist now instead of Cardio. Still not back to halfway "normal". My grandmother had this after illnesses, childbirth, etc. Alot of how I try to control symptoms is my own trial and error. Got to go--dizzy now. DysMom
I thought it was just another symptom of something, but she has been tested beyond the norm. Every possible blood test, multiple MRI's, MRA's, spinal tap, EEG's, EKG, Echocardiogram, Eye exams including field vision testing, Lyme western blot, heavy metals, plus. The new endo looked at her tiny hourglass figure and ruled out anything that would be related to ACTH or cortisol. He said she could not have that shape and had Addison's or Cushing's, etc. Her appetite is normal for a teen. She eats small portions and probably a bit less than most teens but normal. All is fine except the ACTH (high) and the orthostatic hypotension.
She also has (probably unrelated) a heightened sense of smell and has highly flexible joints but not where they pop out just where her fingers can do strange moves.
My daughter now 16 has also been suffering for years. Thy too diagnosed her with a Chiari Malformation among so many other things, including "she needs to see a "shrink". One dr. even wanted to perform surgery. We finally took my daughter last year to Mayo clinic in MN. After testing they said she did not hage a chiari but she has POTS with deconditioning. She's on medication, 1 gallon of water per day, excessive salt intake and exercise.
She still suffers from varying symptoms and new ones every day/month.
It takes time, they say. Some teens are worse than her, some not so and some actually ge better by the time they are in college. They dont really knoiw.
I could list I'm sure all the same symptoms as your daughter but as you know their are so many. The research I've done also indicates several other illnesses. Possibly a trip to Mayo if you can.
Good luck, hope by now you have answers.
If not or if you have more to offer me, please feel free to contact me at ***@****.
I really want to know if other teenage girls who have the symptoms that our daughters have with a POTS diagnosis have an enlarged pituitary gland.
My daughter's is very large and globular and I suspect has something to do with the POTS. It is normal to have a larger pituitary as a teen and then should get smaller once in their 20's. I think that the fact that the enlarged pituitary is right next to the hypothalamus (the hypothalamus affects the autonomic system) may explain why some teens improve in their 20's due to the pituitary going back down to size. This is my personal hopeful theory.
Any chance that you have the MRI cd for your daughter. Is her pituitary larger than average? Note: Medhelp blanks out email addresses so I do not have your email address.
I have a 12 1/2 yr old daughter thats has had nonstop headaches for about 3 weeks now nothings works. Have had all kinds of test that come back negative. She is tired, and hungry all the time. She can't stay a whole day in school because of the headaches. The pain is always on the right side of her head . Ct scan came back normal. blood work normal. Any meds the dr. have given don't work to stop headaches
My son has had severe orthostatic hypotension for three years. He had an MRI four years ago, which found a pituitary mass, thought to be a macroadenoma. He had surgery to remove the tumor/cyst two years ago, but developed the severe chronic hypotension nine months before the surgery, and the operation did not improve this condition ( the pituitary damage was already done).
The tumor turned out to be a craniopharyngioma, technically, a central nervous system cyst, growing under the hypothalamus, and over the pituitary. It was squashing his pituitary gland, causing hormone deficiencies.
All of his symptoms; light sensitivity, eye pain, headaches, severe nausea, appetite loss, cold intolerance, abdominal pain and constipation - are either gone or nearly gone, but the severe OH continues, in spite of treatment. We haven't found anything yet that works for him.
If your daughter's pituitary is enlarged, with vision loss, nausea, headaches, etc. it's definitely pituitary related. It might be pituitary inflammation - lymphocytic hypophysitis, or pituitary hyperplasia from hypothyroidism.
Although some enlargement of the pituitary during the teen years (and pregnancy too) is normal, if it's causing multiple debilitating health problems, that isn't normal.
I hope your daughter is getting careful follow-up on the pituitary and other endocrine hormone management. Has a neurosurgeon looked at her MRI's? Sometimes a surgeon finds things missed by radiologists and other less knowledgeable doctors, even when surgery isn't needed.
I wish the best for your daughter.
Forgot to mention, my son also has a heightened sense of smell, and highly flexible joints. Excess cortisol can cause the connective tissue that supports the joints to weaken. However, because my son has the combo of orthostatic hypotension/tachycardia and excessive joint flexibility, he has been clinically diagnosed with "possible" Ehlers-Danlos Hypermobility Type, because these conditions are frequently seen together.
He has also developed other symptoms that can come with Ehlers, such as swallowing difficulty (dysphagia), digestive problems, anxiety, sleep cycle disruption and extreme nearsightedness. In Ehlers, the orthostatic problems are thought to be from overdilating blood vessels, due to the connective tissue abnormality and it's effect on the smooth muscle lining in the veins.
Years have passed and my daughter, now 20 yrs old, has been diagnosed at UT Southwestern Autonomic Clinic in Dallas with POTS (Postural Orthostatic Tachycardia Syndrome) - Hypovolemic type and autonomic neuropathy. She also has Ehlers Danlos Hypermobility, Mitral Valve Prolapse, and now has a fatty liver and continuous HIGH Bilirubin Blood Work. Her doctor says that is Gilbert Syndrome. So far the only drug that helps is Florinef but she needs monthly IV Saline treatment to be able to keep functioning. She swears that if she could have daily saline IVs that she would be normal. After an IV, she feels like a normal person but it does not last long. She is now having depression and anxiety issues and is being treated with Cymbalta. She is a junior in college and because of an automobile accident days before this semester started which caused a severe concussion and inner ear imbalance, she is fighting to get any credit for this semester. Her professors, even the ones that teach neurology just don't understand when they see her looking healthy at one point of the day, why she has to miss class or a test later in the day. It is so frustrating. She has realized that her disease will not allow her to get to medical school unless she improves dramatically. Because of this she has changed her goal from Pediatric Neurologist to a Physicians' Assistant. She loves medicine but med school is too demanding on a healthy person much less someone with POTS. Wish you all the best.
I was diagnosed with Orthostatic Hypotension when I was 15 years old. I have had over 50 syncopes over the last two years. I am going in on the 22nd of this month to get an EPS study to see if there are any abnormalities with my heart. The other day I had a tilt table test and surely enough I passed out on it. I havn't been able to work or go to college. I can't even leave the house because I have already passed out in the road 3 times. I have a lot of sympathy for anyone who has this condition. I just don't know what to do anymore.
I'm glad your daughter made it to college! At this point in time, I can't even imagine my son recovering enough to do anything other than online courses.
He has a wheelchair, but gets exhausted too quickly to go anywhere. He is 16 now, and homeschooling.
I understand what your daughter means; about the daily IV saline. When my son was hospitalized with "gastritis" and nonstop vomiting this year, he was on IV saline for two days, and his BP rose to a respectable 112/64. He was able to stand for almost two minutes. Usually, he can't stand up for more than 20 or 30 seconds!
I asked about getting weekly IV saline for him at the time, but his doc seemed to think it was not necessary.
I finally got his endocrinologist to start him on Florinef four months ago, but it's not really helping. (He seems more alert while sitting, but still can't stand). He had an echo this year; no abnormalities seen.
I admire your daughter's ambition to go to medical school. I hope someday she is strong enough to become the doctor she wanted to be.
That's awful, about the car accident! It certainly didn't help anything!
My daughter asked her doctor at UT Southwestern for an IV Port to have daily saline. He agreed that it would help her but stated that it would be giving up the fight. He said that he thought that she could get through with other means and agreed to give her a letter addressed to ERs stating that if she ends up there, they are to give her saline. She needs to go to ER about once per month to be able to function. She failed two of her classes this semester because of too many missed days and they would not let her do makeup work. She needs to go part time to college but she won't agree. She is determined to graduate and go further in medicine.
But your son is in such a state that I do not see why the doctors aren't willing to work with saline IVs. My daughter spoke to one women who is Austraila and has an IV Port and gets saline every night and she said it is amazing at what the difference is. It is dangerous because there is a big risk of infection at the port site and the port should not be left in for so long but it may be worth the risk if he cannot stand up or function normally. My daughter is not at that critical point at this time so we did not argue the point with the doctor.
One note about Florinef: It does drop Potassium levels so it has to be watched carefully. My daughter takes a Potassium pill dialy because it caused her Potassium level to drop dramatically after 2 weeks on Florinef. She had Potassium checked every 2 weeks when first on it and now monthly checks.
May God bless you both.