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Idiopathic intracranial hypertension
I was diagnosed in June this year with Idiopathic intracranial hypertension after spending the last 2 years thinking I was a hypochondriac. I started out with pain in my head, neck and legs, then I also started to have numbness in the saddle region, ringing and swooshing noises in my ears. I am in constant pain throughout my whole body. It is an internal pain that I can not describe. I then couldn't walk to far because it felt like my lower legs were going to tear open. As well as feeling really dizzy and uneasy on my feet. I would go grocery shopping for 30 minutes and within 5 mins of being out shopping I could hardly walk. When I finally got to the car I had to sit sideways in the car seat and then physically lift each leg into the car because I could not lift them. After a while I had full body numbness. So of course not being able to do too much I did gain extra weight. When this first began I was approx 100kg. My GP sent me to Orthopedic doctors, Neurological doctors and gynecologist. No one had an answer. They looked at me as if I was neurotic or a hypochondriac. I knew something wasn't right but the doctors kept saying there was nothing wrong. Also a year and a half ago I have had to start wearing glasses and have had to get them updared every 5-6 months. I got fed up with seeing doctors and all of them telling me I need to lose weight because I'm fat. I was caught between a rock and a hard place. Then in June I went to a doctor because I was waking with severe pressure headaches. I am also allergic to anything codeine or opiate based so the only thing I can have is Panadol and Anti Inflammatory meds. The doctor sent me to an Optometrist. They took a photo of my optic nerve and found that I had Papilledema. So I was sent to an Opthalmologist. They confirmed the finding. I have then had CT scans, MRI scans and also a Lumbar Puncture. I am on Diamox. They have also found that I have Empty Sella Syndrome. On Wednesday I presented to the Emergency Department due to having a pop sensation on the left side of my head followed by a sharp pain. I had my Lumbar Puncture last Friday and was discharged that afternoon. I then ended up having to go to the Emergency Department on Sunday due to severe headache, nausea and vomiting. Put on a drip, prescribed Stemetil and sent home. I work, but have had since last Wednesday off due to the pain. I have an extremely high pain threshold due to not being able to have strong painkillers and have battled through and kept working. But I think I am now over my threshlld. My skull feels like it needs to explode open at the back, my neck is so painful and I have limited movement when turning my head. I just need to know is there something I can do to help relieve the pain and pressure. Just wondering if anyone out there has experienced the same or similar. Please any help would be great.
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@smoothasice86, I think a lot of us including myself have dealt with health issues that seem to linger on with seemingly no hope of treatment available. I am glad that your wife is continuing to hold out hope that her sight will return and that makes you happy. I feel blessed to have a spouse that is supportive for my health issues and gives me a lift when I need it. I think that your advocating for your wife does the same for her.
You've obviously done a lot of research on her condition. Do you have a list of questions that you can put together for when you meet the specialist Friday? I think it really helps to have them written down and take them with you are less likely to forget which is one of the problems I have when meeting with specialists. I've learned if I have one or two major questions I'm trying to get answered, I write them down and take them with me to my appointment.
Hoping you will have a good meeting with the specialist Friday and you can let us know how it goes.
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3 ReactionsGood luck with your meeting with the specialist. May I suggest that you record this very important meeting on your cell. Just ask the specalalist of that is ok. I found in my meetings with my NS, that I would get distracted with all the discussion that I would forget to write things down. So I would record meetings and then I could refer back to the recordings.
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3 ReactionsHello @smoothasice86,
I agree with what, John, @johnbishop said about your supporting your wife with her vision problems. I am glad to hear that you will be seeing another specialist regarding this problem. A second opinion is always a good idea.
In addition to what John suggested about bringing a list of questions, I would also suggest that you read this discussion on tips on how to get off to the best start with a new specialist. Here is the link to that discussion.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/I recommend that you read through those posts and think about how you can approach this appointment in the most efficient way.
I appreciate that you will post again after your appointment. I look forward to hearing from you again!
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2 Reactions@smoothasice86
Just thinking about your wife's vision problems and wondering how her appointment went with the specialist earlier this month. I hope that you both got some answers to your questions.
Will you post an update when you have the opportunity?
Hello @smoothasice86,
I noticed that it has been a while since you last posted. I hope your wife's vision is improving. Have you had any more helpful information from her doctors?
My husband has been diagnosed with Idiopathic Intracranial Hypertension and has been suffering with debilitating symptoms for over a year and hasn’t been able to work. He needs to see a Nero-ophthalmologist about brain surgery to help relieve the pressure on his brain.
Yeah, like it’s not bad enough he has to have brain surgery and stay in the hospital for at least a week during a pandemic. Taking weeks we find out that the doctor he need to see about the surgery won’t see him because he doesn’t take our insurance. We had a zoom meeting with the neurologist and she gave two us slight possibilities, though she wasn’t very hopeful.
My husbands neurologist has already reached out to the specialist doctor and Mayo Clinic and have been denied due to insurance. Now his doctor is trying to bypass the Nero-ophthalmologist and go strait to a neurosurgeon and she is also reaching out to a doctor in Tucson she thinks might be able to help.
In the last few days of July 2019 I graduated with my bachelors in biology and secondary education. During the same time I got my first teaching position. It was a wonderful and intense first year.
This year I have the best team and I love teaching and my students. But with my student loans and beginning teacher pay things are extremely tight. I lead three clubs and help students with homework. I love this program so much that I taught two sessions of virtual summer school sessions.
Now my husbands vision, health, and well-being are on the line, and our families ability to survive. He is not himself, he is in a fog, he can’t think, and stress causes his brain to short circuit. It hurts to see your best friend and love go through something so horrific; and to suffer for so long, and not receive the medical help he needs. It is his brain! Do you know any organizations or doctors that would be helpful?
@helpformyhusband Welcome to Mayo Clinic Connect. Your husband is increasingly showing signs of impairment. Due to this he is unable to work and your family is experiencing financial hardship. You are currently looking for an in-network surgeon because your first choice of surgeon is not covered by your insurance. It hurts to see your husband, "go through" this. You are asking if anyone knows of any organization or doctors that may be helpful.
You will see that I have moved your question into a discussion where members have previously discussed idiopathic intracranial hypertension. I did this so you could connect with members like @smoothasice86 @oldkarl @aprillelain who have experience with this topic and may be a good resource for you. I also encourage you to scroll back through the comments to find previously shared posts.
May I ask if you have contacted your insurance company directly? If not, I might suggest you do so. Insurance can be difficult to navigate. Your insurance company may be able to help with your situation and they will certainly be able to give you a list of in-network surgeons. They will likely have an online option to browse also. The department of utilization management at the insurance company may be helpful. They handle preauthorization and sometimes they can make exceptions regarding in-network providers.
May I ask what kind of communication you have had directly with your insurance carrier?
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2 ReactionsHello @helpformyhusband,
Thinking about you and your husband. I hope he is stable for now.
Any new possibilities for a referral? Any help from your insurance carrier?
for severe pain, accupunture has been proved to be effective, some like mine (arthritis pain) gone its because the muscle injured without proper care. I 've seen stroke people can walk again, move hand, and people with numbness can do normal activities again, thank God for that. Keep praying for your health and do some accupunture job done.