I am a 34 year old female who has had chronic daily headaches for 4 years and migraines for 8 years. My headaches are becoming more and more painful and difficult to treat. I recently saw an ENT doctor that suggested that I have a lumbar puncture for CSF pressure even though I had been told that I don't have papilladema. I also had an MRI that noted "empty sella" When reading up on this I discovered that it can be a sign of Benign Intracranial Hypertension. Is there something else that they are missing?
My symptoms are daily headaches, dizziness, pulsating in my ear, occasional visual disturbances, nausea and occasional vomiting, tingling in feet and pain down arm on the side of headache. I am also very overweight now due to my depression from the headaches. Please help me with whatever you can.
I read through your post carefully and based on that entirely I think you have benign intracranial hypertension, as you too found out. However this could be idiopathic (cause not known) or could be due to hypothyroidsm, hypoparathyroidsm, adrenal gland insufficiency, certain medications like cimetidine, corticosteroids, danazol, isotretinoin, levothyroxine, lithium, minocycline, nalidixic acid, nitrofurantoin, tamoxifen, tetracycline, or ciclosporin, iron deficiency anemia, chronic renal failure etc. Similarly Empty Sella Syndrome can be a primary one or secondary one due to injury, radiation or chemotherapy. In your case it appears to be primary.
You will need to undergo visual field charting, CT scan or MRI of the brain, blood tests to rule out the causes and a detailed medical history will have to be taken. This condition is more in females and in overweight, hence weight reduction is a must.
Please consult all these possibilities with your physician. Hope this helps. If you need more help, please feel free to contact. I’ll be happy to answer your queries. Please keep me posted.
Thank you for your help. Where do I go from here. Do I see an endocrinologist or a neurologist or both? I have had a very hard time with my physicians due to being in the military system. When I get seen again this week, I want to tell them exactly what I need, because a majority of them don't know what to do with me anymore.
Yes, a combined approach of an Endocrine Specialist and a Neurologist will be best. I am not sure whether you have been tested for hypothyroidsm etc, for certain endocrine problems too lead to weight gain and inability to lose weight. Gastric bypass is a major decision and not totally without side effects. After bypass you may have problems like nutritional insufficiency, stenosis of the bypass etc.
I would suggest you see an Endocrine Specialist and a Neurologist and get a complete assessment done by them. In case you are diagnosed with an endocrine disorder and are treated for it, you will automatically lose weight. Take their opinion too about the need for the gastric bypass.
I would appreciate if you keep me posted. Please let me know what your specialists say. Meanwhile, if you need more help, please feel free to contact. I’ll be happy to answer your queries.
Well, I saw my regular doctor. He felt that it was unnessary to see an endocrinologist, but he did order some hormone labs. He did think that I should have a lumbar puncture; however I went to see a new neurologist yesterday who thought that a lumbar puncture was completely unnecessary. He examined my eyes and said they were fine. He said he did see some venous throbbing in my left eye and then he decided he wanted me to try three of the same medicines that I have taken before, but all together. I really can't handle all of this anymore. I don't understand why doctors don't see how this affects your life or lack thereof. I have three children and a husband and I think if this continues, I will lose all of it.
I do have one more consult for a different neurologist, but I am afraid that I will get the same answer.
I understand it is a difficult situation and fully empathize with you. Please wait for your hormone reports to come. I would appreciate if you let me know what they are. Meanwhile consult this other neurologist. Let me know what he says. Then we will decide what needs to be done. You came this far, do not lose hope now. All the best! Please keep me posted.
I wanted to update this posting. I did have benign intracranial hypertension. It did not cause any optic nerve damage which is why the neurologists did not want to do a spinal tap. I went through a few neurologists before I found one that would do the spinal tap. I am now on Methazolamide 3 times a day and have had 2 spinal taps to confirm diagnosis and relieve the pressure. This year has been a much better year than the past years. I now have headaches mostly when the weather changes.
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