Author Topic: Men with IIH  (Read 28750 times)

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Offline deeq1969

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Men with IIH
« on: October 10, 2014, 06:25:54 PM »
Hi all

I know there has not been many posts here recently but I would be interested in hearing from men that are suffering from this condition.

Offline marko1966

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Re: Men with IIH
« Reply #1 on: November 15, 2014, 08:29:47 PM »
Hi,im mark and i was diagnosed around 6 months ago.
This condition seems to be very rare in men,would be interested to know how many men have this in the uk.
I suffer from all the usual symptoms but my headaches are very mild which is a big bonus,im taking 750 mg of diamox daily but gradually going higher
Went for another eye exam on 13th november and although my eyesight seems very good the swelling on my optic nerve hasnt changed
Got an appointment with neuro on 20th november,see what he has to say.

Offline Sandra D

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Re: Men with IIH
« Reply #2 on: November 15, 2014, 09:55:04 PM »
Iknow a couple of guys who live near me on the south coast who have it. There aren't many in the UK and IIH is rare in men.

We are running a survey at the moment on the IIH UK charity website and so far out of the 280 responses we have, 8 are from men.

I am glad your headaches aren't too bad and fingers crossed your papilloedema remains stable  :smile

Posts by members, moderators and admins are not considered medical advice and no guarantee is made against accuracy. Please see your doctor before taking advice found on the internet.

Offline marko1966

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Re: Men with IIH
« Reply #3 on: November 18, 2014, 06:55:17 PM »
Thanks for reply,my neurologist says in 15 years in his job he has only known two men with this condition and im one of them,lol. :unsure  :eek

Offline deeq1969

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Re: Men with IIH
« Reply #4 on: November 21, 2014, 02:43:50 PM »
Hi Mark,

I hope your appointment with your neuro went well.

I am a 45 year old man and I was diagnosed about 6 months ago also, although my symptoms are rare also. Over 6 and a half years ago I was very ill with very severe headaches, dizziness, tinnitus, double vision and palsy on the left side of my face. After 3 weeks in hospital I was diagnosed with 6th nerve palsy and intracrannial hypotension (lack of cerebral spinal fluid). I was given an epidural blood patch and told to take caffeine and my symptoms gradually improved.

For the last six years I have continued to suffer with pressure headaches, sore eyes, tinnitus and facial swelling (mostly on left side). I have had numerous MRIs, CT scans and lumbar punctures and most were normal although symptoms continued. My opening pressure is in the mid 20s and I have seen no improvement from Amytripiline and Topirimate. I have had a number of lumbar punctures six weeks apart which have lowered the pressure temporarily. I am currently awaiting results of a visual field test.

I have found this site very beneficial in finding information, advice and a sense of understanding. As it is primarily a condition that affects women I feel it would be helpful for men to discuss common issues.

Offline Keren

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Re: Men with IIH
« Reply #5 on: November 22, 2014, 08:23:32 AM »
we get loads of people who read but are not sure about posting / dont have the time to reply (every so often someone pops on and says they have always read but this is their first post)

So i am sure there are more men out there who would be interested in having a men's chat, and seeing comments from the men's perspective.

so why dont you stick in some new threads in the men's section and see if anyone comes back?  :cheerful

Remember that people are at various states of illness and busyness, so dont check the boards every day. that means it can take a while for the replies to get posted. but dont be discouraged if you havent heard anything back yet, and maybe you wont get loads of replies, but you just have to look at the (Read XXXX times) comment next to the title to know how many people have been interested in what you had to say.  so feel free to share, the more input we get from everyone the more we all learn to combat this condition.
 :grouphugs

Posts by members, moderators and admins are not considered medical advice and no guarantee is made against accuracy. Please see your doctor before taking advice found on the internet.

Offline markt

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Re: Men with IIH
« Reply #6 on: November 22, 2014, 02:00:47 PM »
Hi you guys

I also suffer with this condition and im just recovering from having a new valve fitted to my lp shunt on thursday just gone. I take time out each day to read the posts on her but dont often post, not sure if its a bloke thing.

Regards

Mark



Offline deeq1969

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Re: Men with IIH
« Reply #7 on: November 22, 2014, 07:27:40 PM »
Hi Markt

Hope your recovery goes well. I have been reading away at posts also and had reservations about posting, but it is good to hear from men with the condition. I think the only way to understand this condition and how we feel and deal with it is to hear testimony from others that know what it is like.
Some time ago one of the registrars that gave me a lumbar puncture told me that I couldn't possibly have IIH as I was neither female nor obese.

You can get tired hearing from people that you are looking well when you are feeling terrible and can hardly look or talk to them.

Offline markt

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Re: Men with IIH
« Reply #8 on: November 22, 2014, 09:21:46 PM »
Hi deeq1969

I know exactly what you mean about feeling terrible but outwardly one looks fine, over the many years ive had this condition a few registrars have tried to dismiss it.  One even said I had a migraine without even reading my hospital notes. One key thing is to trust in your own intuition about how your condition is, if it doesn't feel right get checked out. Believe me, in the past I've spent many a day in pain thinking it would ease off.

Mark


Offline dabirg

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Re: Men with IIH
« Reply #9 on: November 23, 2014, 09:54:12 AM »
Hi Guys - just to remind you that if you want you can also send each other personal messages - if you click on a persons userid and look down there is an option to send a personal message - of if their email is listed you can email each other - if you would prefer to discuss anything privately.  .... 
Not encouraging you to move away from the board at all - its great that one post is starting to bring together a group of guys and I hope you all benefit from it.

Offline StevePostie.

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Re: Men with IIH
« Reply #10 on: December 01, 2014, 06:02:15 PM »
We are a rare breed.
I think my mum secretly use to dress me up as a girl. :whistle
It`s not the pain,that I`m use to it
It`s feeling like I`m already dead
I see from a ceiling of misty spirit
Rising from a place in my head.

Offline malcg

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Re: Men with IIH
« Reply #11 on: December 01, 2015, 12:12:47 PM »
Hi All

I have very recently been diagnosed with IIH (just posted on the introduction thread) and I do agree it does appear to be more of a female related illness I don't know why. I know from personal experience it is very difficult to get a diagnosis so I wonder if there are a lot more men out there just living with it and not knowing.  I know men do have big issues with actually going to see the GP in the first place so the push to get this diagnosis they perhaps give up.

Just a personal opinion with all I have had to endure to get where I am, and I am still having to push to get anyone to actually do anything to resolve it.  Goodness knows what will happen when my private medical insurance expires as with now being out of work I have to pay it my self and I can no longer afford it.

Malcolm Gillespie

Offline jugularforamen

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Re: Men with IIH
« Reply #12 on: January 16, 2016, 12:30:59 AM »
I have been diagnosed with IIH for 10 years. They did not have any clue why I had it. About a year ago I found out that I had a narrowing in the jugular foramen in combination with thin veins on that side. This is likely what caused it for me. Strangely they did not do that connection from the beginning and I believe since I responded well to oral treatment they did not give much priority to look deeper into it. I suggest all men to have their veins checked for narrowness.