I found out I had a Chiari malformation in 2001. Suddenly my entire life made sense. I never knew that there was anything different about me, I just always wondered why other people could do things without getting severe headaches, dizziness, or blacking out. I would watch people dance and jerk their heads around and my head would start hurting just watching them. Getting that diagnosis was a relief. It really didn't change my life at all because I had adapted myself to all of the symptoms and knew what to avoid.
However, I had lung surgery in 2005. Within two months I was diagnosed with Hashimoto's thyroiditis and then my entire life began to unravel. Since 2005 I have seen doctor after doctor after doctor and, even though some are willing, not one is able to help me. I saw in some discussions here that a few of you have had the exact same symptoms as I have had since 2005. I am to the point that if another doctor says "I want to help you, but there's nothing I can do", well I don't know what I'll do.
My major complaints are: My body temperature cannot be regulated. Some days my temperature is 96.2 and the next day it is 101. My blood pressure has always been normal. Suddenly it is too high. I cannot exert myself or engage in any activity without my head and face becoming drenched. Then I start shaking. Sometimes it takes up to 45 minutes for it to stop. While my head is being soaked with sweat, the rest of my body is freezing. My potassium level has dropped dangerously low and my Vitamin D level is also too low. I have difficulty swallowing, especially potatoes (any kind). I have no appetite, but can't lose weight. My sleep is the absolute worst symptom of all. I CANNOT wake up. I was finally given Provigil again, after years of insurance denial, and that helps a little bit. I now have sleep apnea also.
I know that something happened during my lung surgery in 2005 and I believe it was the position of my head during the surgery. The anesthesiologist looked at my MRI prior to the surgery to see if the Chiari would be a problem. He thought I would be fine. I think that because of the Chiari too much pressure was put on the pituitary gland and/or hypothalamus and caused some kind of disruption in their function. How do I find out if this happened? There are so many other symptoms also, but I have discussed the ones I can think of now. Oh yes, my memory is also a problem, and finding words in my brain that should be so easy becomes impossible. I have had numerous blood tests, X-rays, MRI's, CT scans, echocardiograms, nerve block, video swallow, bone densities, and psychiatric evaluations. Every time I see my endocrinologist, I am told to to talk to my psychiatrist or neurologist. This is definitely an endocrine problem. Are there any doctors who can put all of these pieces together to get a diagnosis? I want to go on "Mystery Diagnosis", but you need a diagnosis for that. Please, can anyone help me?
Ur first paragraph sounds like I could have written it.....and teh same as ur question, as to y ur drs can not help...the problem is u have not gotten to the right ones yet....u need a true chiari specialist.
Sounds like u may also have POTS....
Many with Chiari, and related conditions like Ehlers-Danlos Syndrome do have issues with vitamin absorption....u need to take supplements and since ur potassium is low as well as ur Vit D, u most likely need magnesium too!
Look into B12 as well.....
We have a list of Drs that members here have been to liked and added to the list, the list is not a referral u still have to research the drs...but use the list to help get started on the research.
Selma, thanks for your reply. I have had magnesium and B12 levels checked along with so many others.....always within normal limits. I will check out the link you attached. Thank you so much for your advice.
The one magnesium level that is important they do not check as it is a costly test to run...so if u take meds for GERD or are low in Vit D and levels do not seem to stay where they should with supplements, that is an indication that ur magnesium levels may also be low.....
Look at symptoms of low magnesium levels, I think u may be surprised as to how it can affect us.
Keep us posted as to what u find out or if u have more questions : )
I am not a Chiari patient but I have skull malformations, ongoing pituitary issues and on and off csf leaks. Anyways I wanted to suggest that you see a neuroendocrinologist for a complete workup of your hypothalamic/pituitary axis. The temperature issues, thyroid etc might be able to be better treated and help you to feel better with the hormonal stuff. You might even need to be tested for growth hormone deficincy which can cause major probs with quality of life, fat distribution and so much more. Generally they are at large university medical center that have a pituitary program. Not just any endo will do, you need a specialist. Looks for ones that work with pituitary patients.
i hope that you feel better soon.
Horselip, thanks for your suggestions. It makes sense that a neuroendocrinologist is who I should see. Finding one will be my next step. I appreciate your help as well as Selma's. It is very frustrating to know that I have a real problem and my doctors do some tests and then give up. I am not going to give up. I will keep you both posted. Thanks.
Welcome, and welcome to the Chairian journey. It is very fustrating where you are at right now. Most of us went through the same thing. Seem's like you have a good attitude toward's it. Just keep being perisistant and find a true Chairian specialist. I also suggest you get a copy of all your report's MRI, CT. and start making a list of question's u want to ask the Dr. so when you do have the appt you won't forget to ask them. I also highly suggest have a health partner there with you. MY DD and DH were mine and they told the NS issues I was having and I didn't even realize it. Hope this help's some what. Also alway's remember we are here on the forum for you and your not a lone. It's hard for us to deal with this let alone having a Dr. that just send's you on your way with no answer's. Best of luck
All I can say is most of what you wrote sounds as if I wrote it. You will hear that a lot from people here. We all went through the same process often getting dismissed as needing a psychiatrist. Some of us are still trying to figure out what direction to take. You'll get a lot of help/info from this community. Hope you feel better and get answers soon.
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