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 Mel - diagnosed 2011

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mel33
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PostSubject: Mel - diagnosed 2011   Sat Dec 31, 2011 7:49 pm

Hi all

So nice to find this site, so i can share my iih experiences. Doesnt matter if nobody reads it, just good to get it all off my chest.
Since I can remember, I have always suffered with headaches. Became a part of my life from early teens. Had various blood tests but nothing abnormal detected. I always felt that nobody believed that i was having these awful headaches.
Anyway-fast forward to July 2011. I had been having some pain behind my left eye for a few mths so decided that i should have my eyes tested. I hadnt had them done for 11 yrs!! So im at the opticians and he has checked my sight and says all is fine. Then he checks the back of my eyes and asks 'do you suffer from headaches?' Um yes why?? Apparently my optical nerves were swollen. He was going to refer me back to my gp to be refered to a neurologist and eye specialist.
After not hearing anything and several phonecalls later, i learnt that my optician had gone on holiday and had forgotten to send my referal off!! So not happy and very worried.
My gp requested an urgent ct scan and appointment with a neurologist. The ct scan showed nothing abnormal. A few days later I saw a neurologist. He couldnt understand why i had been accepted as an emergency because he didnt see it as an emergency. He said that it didnt matter if i saw him this week, this month or even this year. He totally talked down iih saying it wasnt a problem. He gave me the choice of having an MRI and LP done. I wanted a professional to advise me what was the best action to take, but he just said it was totally up to me to have the tests done!!! So i said I would like them done.
MRI showed empty stella, which is consistent with iih. I then had a LP done. Looking back its funny but at the time it wasnt. My LP was performed by a DR who had came in especially to do it after being on a night shift. When she came in the room, she went on about how tired she was and didnt think she should be doing it!! Greay hey. LP was done, i didnt find it too bad, although after having 3 children I do have a high pain threshold. Opening pressure was 33. She told me that i definately have iih. She said that she would drain it right down and i would feel so much better. Straight away after she had finished, i sat up and had an immediate very bad headache. Never felt anything like it. I was told to drink a cup of coffee and go home. She said that i would need to see a neurologist and eye specialist every 3 mths and was going to refer me to the neurologist to be seen asap.
That week after the LP was honestly the worst of my life. I could not lift my head up without excruciating pain. After 3 days of feeling the same, my husband phoned the hospital for advice. He was advised to get me to drink lots of caffeine.
So finally feeling better, i was waiting for news of an appointment with a neurologist to see what happens next. Spoke to GP who said that my discharge note had said no follow up and to put me on diamox 250mg 4 x daily. So I phone the hospital and find out I have been given a appointment for a neurologist for APRIL 2012!!!!!! Not amused at all.
So here I am now, getting headaches on a daily basis, waking up with them. I feel so exhausted all of the time and have no energy to do anything. Not happy with having to wait untill April to see a neurologist. And when I do see him, im not expecting much as he didnt seem to think IIH was a serious condition.
Then I see all these support sites and read about people who have had lots of LPs, shunts and other things and I realise it is a serious condition.
Apologies for the long post
Mel
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Wylee
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PostSubject: Re: Mel - diagnosed 2011   Sat Dec 31, 2011 9:23 pm

Hi Mel, and welcome to the forum. You poor dear!! I hate to hear of these horror stories where these heartless doctors are involved. Where did they go to Medical School? Siberia??
Your case sounds like "classic" IIH (Idiopathic - source unknown; Intracranial Hypertension). It is not going to kill you, and for that reason it is difficult to get these medical people interested in helping us. For that reason, you will need to advocate for yourself!! Having family members stand with you will help. I highly recommend your husband becoming involved with your care. Often when a man says he wants attention, he gets it!

I found that my symptoms were better after having fluid drained off during a lp (my opening pressures were always much lower than yours: 22 - 24) followed right away with going on the Diamox. Taking the diuretic soon after having the lp seems to help keep the pressure lower, longer. Some people are able to get relief by the medicine alone. I was not one of those though.

It sounds like after the lp you had low pressure symptoms, which is usually caused by getting up too soon after having the lp done. Here in the US, my Doc makes us lay flat for one hour after the lp to avoid that issue. A low pressure headache is no fun!!
If you are waking up with a headache (from laying flat all night it reduces the pressure to the low end), try stuffing a bunch of pillows behind your shoulders and head to raise you up while you sleep.
Many of us had symptom relief for quite a while using lp's and Diamox. When that stops working, there are other meds to try, or you can think about surgery. Shunts are considered "common" surgical operations.

Again, welcome to you. Feel free to come on board and vent away any time you want! We understand!!
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mel33
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PostSubject: Re: Mel - diagnosed 2011   Sat Dec 31, 2011 10:38 pm

thankyou wylee. it feels so good to talk to people who know what you are going through Smile
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PostSubject: Re: Mel - diagnosed 2011   Sun Jan 01, 2012 1:59 pm

Hi Mel :hello:

I am so sorry to hear about your bad luck so far, I agree with Wylee, there seems to be a few medical practitioners out there who either think IIH is a minor ailment, or do not understand it at all. I am sorry you have had to encounter these people :( x
I am so glad you found this site and forum too, it worked wonders for me, it is amazing to have a support network of people around you who know what you are going through Smile I hope you will find this site useful Very Happy
People are always on hand to chat to, or even rant to Lol x We all need a good rant now and then! x :lol:
There are a lot of links on the main page to resources you may find useful, including what questions to ask your neurologist, advice about certain types of treatment, coping mechanisms and community tried and tested ways of trying to minimize the pain until that next hospital appointment, etc Very Happy There are also links to outside sites that can help you with other things such as information about things like benefits and other things that may be on your mind. :Good Luck

A lot of the information you may need can usually be found in the forums. If not, please feel free to start a new topic and if anyone can help, they do Very Happy

You don't have to apologise for the long post, we all have a lot to say and it is best sometimes to just get it off our chests! x ☀

Please keep us informed on your medical situation, we are all in this together, feel free to post as much or little as you like, and I really hope you manage to find the answers you are looking for Smile

welcome2 and I hope to hear from you again soon!

Melissa

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mel33
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PostSubject: Re: Mel - diagnosed 2011   Sun Jan 01, 2012 8:19 pm

thanks for you reply Melissa. i am already finding this site very useful.
So is it 'normal' to have to wait 6 mths to see a neurologist after diagnosis? I have only seen him once and that was before I was diagnosed with IIH.
How often do other people with iih see a consultant?
Feeling quite annoyed and worried that I have to wait 6 mths to see him.
Dont know what I can do or should do about the situation.
I am tolerating the diamox quite well, but I dont feel any different taking it. Still getting headaches every day :(
Finding it increasingly difficult to cope day to day as I have a 5 yr old, 3 yr old and 2 yr old to look after and a husband that works 6 days a week.
Think im having a feel sorry for myself type of day 😢
Mel xx
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PostSubject: Re: Mel - diagnosed 2011   Sun Jan 01, 2012 8:45 pm

Hi Mel :hello:

Glad you are finding the site useful! Very Happy

Don't worry about the 'sorry for yourself' feeling, this illness does that to you, no need to apologise! hug

From what I have read in the forums, times to see a neurologist differ but some can be as much as six months or sometimes unfortunately even more. :(
The only way we managed to get somebody to listen was to constantly make a lot of noise. GP appointments, referrals, hospital visits, admissions, not taking no for an answer. It is unfortunate that those are the lengths we had to go to, but we found that if you make enough of a fuss they are always mysteriously more eager to get you seen! Lol x
I know it is hard to do, because the illness is so crippling and believe me I feel your pain. And if your pain does get extremely terrible, please get yourself to A&E and get yourself seen to. Don't think you have to put up with being ill, you don't x hug

I would definitely recommend at least going to your GP and explaining the situation, that your medication is having no effect, and the fact you have three young children to look after. He may not be willing to refer you but on the other hand he might. You never know until you ask.

In the mean time, there are guides on the home page which might be of use, such as pain scoring techniques, keeping a journal, things you need to know and questions you need to ask to get you pointed in the right direction.

I hope this helps, feel free to ask anything anytime Smile

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mel33
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PostSubject: Re: Mel - diagnosed 2011   Sun Jan 01, 2012 9:44 pm

Thanks Melissa. I will make an appointment to see my GP Smile
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PostSubject: Re: Mel - diagnosed 2011   Sun Jan 01, 2012 9:51 pm

Awesome Very Happy

Hope I've helped Lol x Let me know how it goes, I hope it goes well Smile

Until then, can I recommend 4head? Its not a pill or anything, its just a stick that you wipe across your forehead. It might sound daft but it really works at taking a headache off. I have horrendous headaches sometimes that leave me being sick and in a lot of pain and the 4head really helps. Its a bit like Vicks if you know what that is, its menthol and helps a lot. I use it sometimes when I've taken all the pain killers I have been prescribed and the pain still isn't going! I think you can get it from Boots, or any chemists Smile

Keep in touch!

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mel33
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PostSubject: Re: Mel - diagnosed 2011   Mon Jan 02, 2012 12:05 pm

I will definately give it a try as painkillers dont touch it xx
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PostSubject: Re: Mel - diagnosed 2011   Mon Jan 02, 2012 2:28 pm

Same here :(
I saw the recommendation on this forum and I had just got to the point where I'd try anything Lol
But it worked! Hope it works for you Smile

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JoJo123
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PostSubject: Re: Mel - diagnosed 2011   Tue Jan 03, 2012 1:00 am

Hi Mel,

I cannot believe what you have had to go through? As if having this itself isn't bad enough, but you are left feeling this way, probably scared (I know I was) full of questions and wondering if you will ever feel any better and the people responsible for your care don't seem to give a damn.

I have to agree with Melissa from admin and if my latest episode is anything to go by, keep phoning and visiting the doctors until you get a referral or help you feel happy with. See a different Doctor if necessary and if it's really un-bearable then do take yourself to A&E. I was very recently on the telephone to my Doctors nearly every day talking through my symptoms, increasing my medication and then finally a hospital check on my sight. Even at the hospital I was told I would be closely monitored and checked every 3 months and an appointment would be made to see my neurologist within a couple of weeks. I am sure you have a very busy life with your family and I do with my work, so couldn't keep popping to the doctors, but did phone and ask them to call me back to discuss it with me. This is where I used the 1-10 score system with my doctor. As they couldn't see me I had to try and communicate by phone how bad I was feeling from 1-10, 1 being a good day and 10 being the worst. It was when I had 2 days at a 10 that I was sent to the hospital.

I very rarely visit a Doctor and hate to make a nuisance of myself but this is your health, your eye-sight, your quality of life, your precious time with your family, so keep nagging. I am fortunate to have a fantastic neurologist that I hear many seek out as he has quite a reputation, but If you are not happy, then request to see a different neurologist when you receive your hospital appointment. Even ask your doctor to make an appointment for you and request a different neurologist. I asked my Doctor to make me an appointment or refer me to see my neurologist, but again I have had to make my Doctor understand. I have had to see 2 Doctors at my surgery with this condition and they openly admit that they know little about it as it is quite rare. I really puzzle them and have to speak up and tell them what it is like for me.

I wish you all the best and hope you get the care and answers you need. Don't give up, and I hope you will start to feel better soon.

Kindest regards,
Jo xx
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PostSubject: Re: Mel - diagnosed 2011   Tue Jan 03, 2012 7:11 pm

thank you Jo

It's unfortunate but it seems to be the only way to get anyone to listen. :frustrated

Once you are in the system things generally get a lot easier however it is getting into the system in the first place that is the stumbling block!

I hope you are doing well Mel, and hope to hear from you soon hug

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mel33
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PostSubject: Re: Mel - diagnosed 2011   Tue Jan 03, 2012 9:20 pm

Jo, your reply has been very helpful to me. I cant say how nice it feels to have people understand how I am feeling and suffering because of IIH.
Well I have had a good start to the new year. My headaches have been very bearable, just feeling tired all of the time.
The thing I am most concerned about is the neurologist, and his lack of empathy, belief and knowledge of the condition. Anyway I wont be seeing him until April, so a long way away.
In the meantime I will shout/scream and pester my doctors surgery until somebody hears me. My GP is good but does not know much about IIH.
Hi Melissa, I am doing well thankyou Smile
Mel xx
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yaryar
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PostSubject: Re: Mel - diagnosed 2011   Mon Feb 06, 2012 7:15 pm

Hi mel33, so sorry to hear you been going through it, i do feel for you. Ive had it for 11 years and Ive found that you need to be firm with the doctors and make them listen , I had to loose it a few time to make them take me seriously.You shouldnt have to do this but I found it was the only way.I had a fantistic neuolagist for years who was really good andhne
knew his thing, but since have had two different ones as mine retired, I have to tell them al about iih as theyreally dont know alot about it.I find drinking losts of water helps and trying to rest and do things slowly, and I take pain killers before it starts to get really bad.If its bad i n the morning which it usually is I get upAfter Ive taken a pain killer and lye there till is easess. Try not to be so hard on yourself, :flower:
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