Idiopathic intracranial hypertension

Posted by keza71 @keza71, Sep 11, 2017

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.

Liked by lucky1038, marie2022

Hi, @keza71 First off, I have absolutely no doubt about your history. None whatsoever. Many of those symptoms match many of mine. Some are different, but a lot of it is the same. Starting off, I have spent about the last 30 years thinking I was a hypochondriac. In fact, the chief cardiologist at the center where I was trying to get help simply said I was a nut case, and would not put anything but that in the records. This made it impossible to get help anywhere else. And the thing about pain and opiates. I cannot walk from the bathroom to my big chair without stopping for a break from the pain in my feet, knees, hips and back. Some kind of Amyloidosis is the probably culprit. And gaining weight is a curse, a sideline of Amy. Neurologists. Ophthalmologists. etc. etc. So I started keeping my own records and putting it on the ‘net. https://bit.Ly/1w7j4j8 Nice thing about Dropbox.com. Gives me a chance to talk and talk, and…….. I had about 10-15 concussions in my younger days, and not all from angry girls. So you can imagine what my head feels like. I have cerebellar amyloid amorphous deposit, like Alzheimer, and other deposits all over my body. Well, honestly, I doubt I need to have an excuse to operate like I have Alzheimer’s. Anyway, Be certain you are dealing with a well-experienced and funded center, not just local medicos. Places like Mayo-MN, Brigham and Women’s, Cleveland Clinic, Fred Hutchinson. Have them check for mis-folded protein in the blood and urine, etc. If they tell you they cannot find the problem, just tell them maybe if they actually thought they might get paid they could look a little harder. And hang in there. I figure suicide is probably not all it seems it would be. I figure I would still have to deal with someone like Pilate.

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@oldkarl

Hi, @keza71 First off, I have absolutely no doubt about your history. None whatsoever. Many of those symptoms match many of mine. Some are different, but a lot of it is the same. Starting off, I have spent about the last 30 years thinking I was a hypochondriac. In fact, the chief cardiologist at the center where I was trying to get help simply said I was a nut case, and would not put anything but that in the records. This made it impossible to get help anywhere else. And the thing about pain and opiates. I cannot walk from the bathroom to my big chair without stopping for a break from the pain in my feet, knees, hips and back. Some kind of Amyloidosis is the probably culprit. And gaining weight is a curse, a sideline of Amy. Neurologists. Ophthalmologists. etc. etc. So I started keeping my own records and putting it on the ‘net. https://bit.Ly/1w7j4j8 Nice thing about Dropbox.com. Gives me a chance to talk and talk, and…….. I had about 10-15 concussions in my younger days, and not all from angry girls. So you can imagine what my head feels like. I have cerebellar amyloid amorphous deposit, like Alzheimer, and other deposits all over my body. Well, honestly, I doubt I need to have an excuse to operate like I have Alzheimer’s. Anyway, Be certain you are dealing with a well-experienced and funded center, not just local medicos. Places like Mayo-MN, Brigham and Women’s, Cleveland Clinic, Fred Hutchinson. Have them check for mis-folded protein in the blood and urine, etc. If they tell you they cannot find the problem, just tell them maybe if they actually thought they might get paid they could look a little harder. And hang in there. I figure suicide is probably not all it seems it would be. I figure I would still have to deal with someone like Pilate.

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Hi, @oldkarl Thank you for your response. I did fail to mention also that I live in Queensland, Australia. Specialists are very hard to find here. Especially ones that deal with neurological disorders. It’s an uphill battle.

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I understand. Most specialists here are around 100 miles away. Might as well try to find a platypus.

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@oldkarl

I understand. Most specialists here are around 100 miles away. Might as well try to find a platypus.

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Definately. The closest specialists to me are in Brisbane 750km or Sydney1500km. I can find a platypus in around 30km. Lol.

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Hi, @keza71. I add my welcome to @oldkarl‘s.
I’d like to also invite @aprillelain to join this discussion. She recently joined Connect and talks about being diagnosed with Idiopathic Intracranial Hypertension, previously known as Pseudo Tumor Cerebri.

Keza, you may also be interested in this discussion
– Empty Sella Syndrome https://connect.mayoclinic.org/discussion/empty-sella-syndrome/

You sure have been to more than your fair share of doctors. Who is following your care now?

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@colleenyoung

Hi, @keza71. I add my welcome to @oldkarl‘s.
I’d like to also invite @aprillelain to join this discussion. She recently joined Connect and talks about being diagnosed with Idiopathic Intracranial Hypertension, previously known as Pseudo Tumor Cerebri.

Keza, you may also be interested in this discussion
– Empty Sella Syndrome https://connect.mayoclinic.org/discussion/empty-sella-syndrome/

You sure have been to more than your fair share of doctors. Who is following your care now?

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Hi @colleenyoung thank you. At the moment I am being looked after by a doctor at the hospital in the Medical team. Where I live we don’t have Neurologists here. So my doctor has been talking with the neurological team in the closest town to me. Since my lumbar puncture on Friday I am still in so much pain. My head feels like it’s going to split open, I have limited movement with my neck due to the pain in my head and when I walk the pain in my head gets extremely bad. I can deal with alot of pain but this is getting beyond a joke. Nobody here seems to know what to do…

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Hello! I’ve had Idiopathic Intracranial Hypertension since 2013. I went through 4 hospitals and too many doctors to count to help me. I had 2 strokes due to the high pressure on my frontal lobes. I’ve recovered from them well. I’ve had to have over 30 spinal tap to help control the pressure and in January I had 2 stents placed in my transverse sinus. They have helped tremendously and I’d recommend seeking a neurosurgeon to take a look at that for you. If you have stenosis of the transverse sinuses, you may be a candidate. Also, a shunt may be an option to help drain the fluid continuously. The IHRFoundation.org has a lot of information on their website as well that may be helpful to you. Also, from what you described pain wise after your spinal tap, it sounds like you got the dreaded low pressure headache afterwards. Unfortunately, since I just saw this, it won’t be helpful this time, but if you have another tap and get a crushing headache afterwards, you may need a blood patch after to seal any leaks from the tap. It helps a lot.

Liked by marie2022

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I was just diagnosed with IIH last week by my nuerologist, I see a nuero-opthomologist in a couple of days. Ive been dealing with dibilitating constant migraines that make my vision blurry and make me see random shadows since July 30 2018. I hear random clicking in my ears and have a hard time with balance. I get dizzy easily and sometimes cant guage depth or run into things. I lost my job because of it but luckily I at least have disability through my job that pays a portion of what I made. I am scared to drive more than a couple miles of my house due to my eyes playing tricks on me all the times. I have lost pretty much all of my independence and am lacking as a mom and wife because I cant be who I was because I feel miserable 24/7.

My nuerologist seems very thorough and I like her, but it had taken so long to get here it seems, like she doesnt believe how much pain I am in and the symtoms I exhibit. She reminds me at every appt each month to lose weight, but doesnt seem to grasp that I am steadily trying, but nothing is working. I am obese, and either the medication or IIH leave me where I overheat easy so I cant work out so I have been strict with diet, but the weight isnt budging. I am also wondering if the partially empty sella has something to do with the struggle to loose as your pituitary is responsible for hormones, metabolism, thyroid, etc. Basically I was prescribed Topiramate since July and now Diamox. For migraines all the triptans and diclofinacs (that dont work). She has scheduled Botox for me next week, maybe that will help.

Where does everyone recieve treatment? Maybe i can point my nuero in thier direction since IIH is so rare, I am hoping this is why she just doesnt know what/where to go with me. Thanks in advance!

Liked by marie2022

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@rrmoss

I was just diagnosed with IIH last week by my nuerologist, I see a nuero-opthomologist in a couple of days. Ive been dealing with dibilitating constant migraines that make my vision blurry and make me see random shadows since July 30 2018. I hear random clicking in my ears and have a hard time with balance. I get dizzy easily and sometimes cant guage depth or run into things. I lost my job because of it but luckily I at least have disability through my job that pays a portion of what I made. I am scared to drive more than a couple miles of my house due to my eyes playing tricks on me all the times. I have lost pretty much all of my independence and am lacking as a mom and wife because I cant be who I was because I feel miserable 24/7.

My nuerologist seems very thorough and I like her, but it had taken so long to get here it seems, like she doesnt believe how much pain I am in and the symtoms I exhibit. She reminds me at every appt each month to lose weight, but doesnt seem to grasp that I am steadily trying, but nothing is working. I am obese, and either the medication or IIH leave me where I overheat easy so I cant work out so I have been strict with diet, but the weight isnt budging. I am also wondering if the partially empty sella has something to do with the struggle to loose as your pituitary is responsible for hormones, metabolism, thyroid, etc. Basically I was prescribed Topiramate since July and now Diamox. For migraines all the triptans and diclofinacs (that dont work). She has scheduled Botox for me next week, maybe that will help.

Where does everyone recieve treatment? Maybe i can point my nuero in thier direction since IIH is so rare, I am hoping this is why she just doesnt know what/where to go with me. Thanks in advance!

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Hello, @rrmoss – welcome to Mayo Clinic Connect. That is a very new diagnosis of idiopathic intracranial hypertension (IIH), and hope you can connect with others here who will empathize with your situation. Having challenges with blurry vision, clicking in your ears, balance and gauging depth to the point you sometimes run into things sounds very difficult, and even more so with a job loss due to it. I am a mom and wife, too, and I'd have a hard time if I felt concerned about driving and felt I'd lost a lot of my independence as you described.

A couple of threads on Connect that may be of interest to you are:
– on migraine is https://connect.mayoclinic.org/discussion/silent-migraines/?pg=1#comment-252463

– on empty sella syndrome https://connect.mayoclinic.org/discussion/empty-sella-syndrome

You might also be interested in starting or participating in a discussion in the Diabetes & Endocrine System group https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/ related to your pituitary questions.

I'd like to invite members who have participated in this discussion previously, like @keza71 @oldkarl @aprillelain to return and offer their insights on idiopathic intracranial hypertension (IIH), as well as where they receive treatment, if applicable. I'd also like to ask members who've mentioned IIH, like @kellysieck @aprillelain @oceangirl @tracyj, to offer their thoughts for you with this new diagnosis. @johnbishop may also have some thoughts or information for you.

Do you have other questions you'd like to ask members related to idiopathic intracranial hypertension (IIH), @rrmoss?

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@rrmoss

I was just diagnosed with IIH last week by my nuerologist, I see a nuero-opthomologist in a couple of days. Ive been dealing with dibilitating constant migraines that make my vision blurry and make me see random shadows since July 30 2018. I hear random clicking in my ears and have a hard time with balance. I get dizzy easily and sometimes cant guage depth or run into things. I lost my job because of it but luckily I at least have disability through my job that pays a portion of what I made. I am scared to drive more than a couple miles of my house due to my eyes playing tricks on me all the times. I have lost pretty much all of my independence and am lacking as a mom and wife because I cant be who I was because I feel miserable 24/7.

My nuerologist seems very thorough and I like her, but it had taken so long to get here it seems, like she doesnt believe how much pain I am in and the symtoms I exhibit. She reminds me at every appt each month to lose weight, but doesnt seem to grasp that I am steadily trying, but nothing is working. I am obese, and either the medication or IIH leave me where I overheat easy so I cant work out so I have been strict with diet, but the weight isnt budging. I am also wondering if the partially empty sella has something to do with the struggle to loose as your pituitary is responsible for hormones, metabolism, thyroid, etc. Basically I was prescribed Topiramate since July and now Diamox. For migraines all the triptans and diclofinacs (that dont work). She has scheduled Botox for me next week, maybe that will help.

Where does everyone recieve treatment? Maybe i can point my nuero in thier direction since IIH is so rare, I am hoping this is why she just doesnt know what/where to go with me. Thanks in advance!

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@rrmoss Hello, I'm a Mayo spine surgery patient, and my physical therapist made a comment recently talking about dural pressures on the brain and that Myofacial release can help that. Here's information about MFR treatment, and I do this myself. The beauty of it is that it can reach into the interconnected areas of the body and release restrictions in tight tissue and a trained therapist can feel where the tightness is in your body. When tight tissue compresses nerves it causes issues, and this opens up those spaces allowing normal function and movement. Not all doctors are familiar with this, but it is gaining acceptance. It has been able to reduce seizures in a child with epilepsy. Sometimes things are physical problems and this therapy can help so many things . Here are some links to information-

http://www.myofascialrelease.com
https://myofascialrelease.com/about/problems-mfr-helps.aspx
https://myofascialrelease.com/downloads/articles/FasciaAsALever.pdf
https://www.massagemag.com/therapeutic-insight-the-john-f-barnes-myofascial-release-perspectiverufus-the-cat-12559/
https://myofascialrelease.com/resources/mfr-talk.aspx

There are a lot of articles at this link.
https://myofascialrelease.com/resources/therapeutic-insight.aspx

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Hello @rrmoss, I would like to add my welcome along with @lisalucier and other members. Sometimes when I'm looking for medical research and treatments I will use Google Scholar (https://scholar.google.com/). I did a search on idiopathic intracranial hypertension treatment and was surprised that there was quite a bit of information available. I thought this article may be helpful but I'm not sure.

The Effect of Acetazolamide and Weight Loss on Intraocular Pressure in Idiopathic Intracranial Hypertension Patients.
https://europepmc.org/abstract/med/30624392

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@rrmoss

I was just diagnosed with IIH last week by my nuerologist, I see a nuero-opthomologist in a couple of days. Ive been dealing with dibilitating constant migraines that make my vision blurry and make me see random shadows since July 30 2018. I hear random clicking in my ears and have a hard time with balance. I get dizzy easily and sometimes cant guage depth or run into things. I lost my job because of it but luckily I at least have disability through my job that pays a portion of what I made. I am scared to drive more than a couple miles of my house due to my eyes playing tricks on me all the times. I have lost pretty much all of my independence and am lacking as a mom and wife because I cant be who I was because I feel miserable 24/7.

My nuerologist seems very thorough and I like her, but it had taken so long to get here it seems, like she doesnt believe how much pain I am in and the symtoms I exhibit. She reminds me at every appt each month to lose weight, but doesnt seem to grasp that I am steadily trying, but nothing is working. I am obese, and either the medication or IIH leave me where I overheat easy so I cant work out so I have been strict with diet, but the weight isnt budging. I am also wondering if the partially empty sella has something to do with the struggle to loose as your pituitary is responsible for hormones, metabolism, thyroid, etc. Basically I was prescribed Topiramate since July and now Diamox. For migraines all the triptans and diclofinacs (that dont work). She has scheduled Botox for me next week, maybe that will help.

Where does everyone recieve treatment? Maybe i can point my nuero in thier direction since IIH is so rare, I am hoping this is why she just doesnt know what/where to go with me. Thanks in advance!

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Hi, @rrmoss – how did things go with the neuro-ophthalmologist?

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@smoothasice86

please forgive my spelling, trying to find answers for my wife's condition. she was diagnosed in mid september of 2019 and very quickly lost her entire field of vision (a months time) she has since under went 2 nerve sheath fenstrations in each of her eyes and a vp shunt placement with a revision on the cathader in less than a months time. control of pressure was achieved on november 14 of 2019. since then she no longer is on 4000mg/ daily of diamox and is completely perscription free but we are still without vision. we have been told by the nuerosurgion that in a period of 9-12 months she would regain vision but i feel hopeless. she has random flashes of full vision here and there but mostly can only detect that a light is on or that she is out in the sun. i am looking for any kind of information or help to get her vision healthy again.

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Hello @smoothasice86 and welcome to Mayo Connect,

I can understand your concern for your wife and the return of her vision. It must be a frightening thing for your wife to lose her vision. I did a little research and found out that this is a rare condition. Here is a link to an article about it from the Rare Diseases website. Just click on the link and you can read more about this disorder. https://rarediseases.org/rare-diseases/idiopathic-intracranial-hypertension/

On Mayo Connect, there is another discussion on this topic. Just click on this link and you can see what other Members on Connect have posted regarding their experiences with this disorder.
https://connect.mayoclinic.org/discussion/idiopathic-intracranial-hypertension/?pg=1#comment-268012

If you care to share more, did your wife have other symptoms before she lost her vision, like headaches, etc?

Liked by Lisa Lucier

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@hopeful33250

Hello @smoothasice86 and welcome to Mayo Connect,

I can understand your concern for your wife and the return of her vision. It must be a frightening thing for your wife to lose her vision. I did a little research and found out that this is a rare condition. Here is a link to an article about it from the Rare Diseases website. Just click on the link and you can read more about this disorder. https://rarediseases.org/rare-diseases/idiopathic-intracranial-hypertension/

On Mayo Connect, there is another discussion on this topic. Just click on this link and you can see what other Members on Connect have posted regarding their experiences with this disorder.
https://connect.mayoclinic.org/discussion/idiopathic-intracranial-hypertension/?pg=1#comment-268012

If you care to share more, did your wife have other symptoms before she lost her vision, like headaches, etc?

Jump to this post

Yes she did have severe headaches along with burning/ringing ears and stiff neck. She was also getting floaters and grey spots in her vision or if she sat down or got up/turned her head to fast she would lose vision for a quick second. After the first fenstration surgery her sight was getting better for about a week but that was still before the vp shunt was placed. Then it started going south so they recommended a 3 day high dose round of iv steroids and after that was finished her sight went dark and that’s when they decided it was serious enough for the shunt to placed. After the shunt went in she was released from the hospital and we went home. In almost a months time we had the follow up Lp to check opening pressure to see if the shunt was working and they found her opening pressure to be over 60cc like it was before. She was immediately admitted and was in surgery to have the shunt revised. Now 11 Lp’s later and we are steady at 15cc opening pressure without the diamox thank god. The neuro opthamologist said she does have paleness in her optic nerves but all the swelling is completely gone now. I’ve read so much on this disease now I feel like a specialist myself and I’ve also read so many stories with people of like nature or worse with total vision loss regain it in a years time but like I said I’m just scared that she won’t get it back. I feel completely helpless in the situation

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@smoothasice86

please forgive my spelling, trying to find answers for my wife's condition. she was diagnosed in mid september of 2019 and very quickly lost her entire field of vision (a months time) she has since under went 2 nerve sheath fenstrations in each of her eyes and a vp shunt placement with a revision on the cathader in less than a months time. control of pressure was achieved on november 14 of 2019. since then she no longer is on 4000mg/ daily of diamox and is completely perscription free but we are still without vision. we have been told by the nuerosurgion that in a period of 9-12 months she would regain vision but i feel hopeless. she has random flashes of full vision here and there but mostly can only detect that a light is on or that she is out in the sun. i am looking for any kind of information or help to get her vision healthy again.

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I’m finding from the link you provided that a lot of the women diagnosed with this had suffered symptoms for what seems like years, just peaks my curiosity because hers all happened so very fast within a couple of months time. I feel like we caught it quickly but I also wonder with it seeming to have been so severe that the damage done to her optic nerves is going to leave her in the dark for the rest of her life. We had been trying to get pregnant for months prior to all of this and had no success and I began to wonder if it wasn’t me that had issues but when I mentioned that to the doctors they told me this is why we could not get pregnant and now she understandably doesn’t want to get pregnant until she can see again because it will break her heart not to be able to see our baby if we ever have one. The doctors have said we can now go for getting pregnant but she still doesn’t want too😰

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