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 Keren - Diagnosis Nov 13

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Keren
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PostSubject: Keren - Diagnosis Nov 13   Wed Feb 19, 2014 9:18 pm

Hi, I'm Keren,
I'm new to the site. I had been having severe headaches since Jan 13. But I also have an overactive thyroid so my doctors spent a long time checking that out for possible causes. 
Finally after ruling that out and all the other tests (bp, ecg, bloods, hormones etc) when I couldn't stand it any longer I had an MRI scan to rule out anything else. When this came back showing a partially empty sella and the radiologist suggested IIH, my young GP had to look it up in the medical dictionary - not an encouraging start. But I also suffer from occasional migraines and get my eyes checked regularly for thyroid eye disease, so when my eye test came back clear - the headaches were put down to migraines.  
However, by this point I was suffering constantly and I argued that my 'migraine' couldn't have been continuous for the last 7 months. And I had quickly learnt the difference between a migraine and this other headache.  Although the symptoms might sound similar, for me: a migraine gives a throb in my ears and IIH high tone, migraine throb in my head, IIH is pressure, in my eyes migraine causes tearing, IIH blurs vision, for me migraine cause nausea, IIH dizziness for a bad attack, migraine pain usual stay in one place, IIH pain can move, migraines normally 3 days max, max IIH cab be 4 weeks between breaks. And NEITHER responded particularly well to anything I threw at them - cocodamol, dicolfenac, ibuprofen, tramodol. Finally last November I convinced my neurologist to do a lumbar Puncture 'just to set my mind a rest' over the IIH 'unlikely question' - in a fairly condescending tone i might add. after 15 mins of poking around the opening pressure was 38 cm/ h20. It took over an hour for them to extract 50ml of fluid and get me down to 28cm/h20. and after that I ended up with 2 weeks of a low pressure headache!
Anyway now I am a confirmed IIH and migraine sufferer and we have been slowly increasing my medication. (I have had bad IIH attack that has set off a migraine - not fun, makes choosing the right medication to use tricky) I am now on 1000mg acetazolamide (Diamox)for the IIH and 100mg Topiramate for the migraine. (plus I was on diclofenac and cocodamol for the left over pain that still breaks through), and then there is the pins and needles, nausea and weird taste to food - on the bright side: yay I've lost a stone, but over all I've still not cracked it. 
On the downside i have just found out that i have reduced kidney function and have had to stop using NSAID painkillers so i am really struggling without effective pain meds. I am need to talk to the Nuero about the Diamox and topirimate as those arent great for kidneys either but i was waiting for the lumber puncture that i had yesterday - which was 23 - so that i knew where we stood in regards to what measures needed to be taken. Anyway my Nuero appointment is tomorrow so at least i dont have to wait long.
at least things have improved since those awful first months were the days were a ticking wasteland of passing pain, but I am still not at the point where I can get back to work (havent been able to work since September), but I hope to get there, and I am glad to have found this site. Because like that first GP I saw, I had to look this up in the medical dictionary, noone told me anything about the condition and despite my best efforts and their best intentions I know my friends and family still have absolutely no clue at all.
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PostSubject: Re: Keren - Diagnosis Nov 13   Thu Feb 20, 2014 7:35 am

hi Keren, wow you really have been through it.  I could probably write more but I need to get to bed soon.  but I had Graves disease and the eye disease, proptosis, too, back in 2001.  within 6 months my first symptoms of IIH started, but I didn't get diagnosed with that until 2012.  it wasn't until shortly after the IIH symptoms started that my eye disease started, and I'm convinced that in me, the proptosis is caused by intracranial pressure.  there has been an association of hyperthyroid with IIH but I don't think I understand it, or that anyone does.   my ICP at diagnosis was 23, so I hope you don't settle for remaining at that pressure.  I was cured by jaw surgery and my ICP is now 14.  no meds.
http://www.ihaveiih.com/t1168-i-m-doing-much-better-now
maybe I will have more to say tomorrow when I am awake.  but just to say, I think that if you have IIH, that to say your headaches are migraines is a misnomer.  I know a lot of neuros think that this coexists.  I don't buy it, and I think a lot of their migraine patients are really IIH.  if you have a headache, it's pressure, not a migraine.   I couldn't tolerate Diamox or Topamax and found Lasix worked much better.  all of it is hard on your kidneys.
anyway, welcome to the site, I'm sure others will write soon too.
so sorry you have joined us with this awful illness.  I hate to tell you this but it may be a lot longer than you think before you can get back to work.  when this starts you keep thinking you are going to get a handle on it but this is rough.  I've been on disability for almost 5 years now.  I am too chemically sensitive to tolerate a work environment, even with my cure.
Deb
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PostSubject: Re: Keren - Diagnosis Nov 13   Thu Feb 20, 2014 9:52 am

Thanks Deb,
Actually I had only been diagnosed with hyperthyroid in September 12 before the headaches started around Jan 13. So hearing from you I am amazed how similar we sound, so could well be a link there, and i am still on thyriod blockers and better blockers to maintain normal thyriod levels.
I am seeing the Neurologist today - I am sure he wont act on a pressure of 23 on its own. As far as I understand 15 - 20 is normal and 25+ is considered diagnose-able for IIH (Dandy criteria), but according to him he wouldn't medicate anything under 30. (I had already asked as i knew my symptoms didn't feel as severe as the last time). so he will think i am correctly medicated.
Its weird that you get such a range between doctors isnt it. But as i am still getting so many headaches, plus the issues with my kidneys, i might see if i can get him to try some other type of medication that might suit me better. Thanks for the reply and i had a look at your post it was very interesting - my eyes are absolutely clear still but its early days (maybe i caught it early enough to keep them clear) and i assume i sleep ok, but how would i really know. i live on my own so no one to tell me, but my brother suffers terribly from sleep apnoea, something to bare in mind...
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PostSubject: Re: Keren - Diagnosis Nov 13   Thu Feb 20, 2014 4:45 pm

hi Keren and a very warm welcome to the forums. Reading through your post, I have to take my hat off to you for being so determined and for not just accepting what you were being told. When you know something isn't right with your body you do need to be persistent. I'm glad it paid off for you and I hope others find it empowering.

In my experience it seems that there are more doctors with a rudimentary knowledge and do the basics, and then there are those that are more specialised. It seems to depend on how many cases they've seen before and how well read up they are on IIH.

Keeping a symptom log will be a great help both to you and your doctors, as it will give them a clear and up-to-date picture. The symptom log may also be helpful to isolate what migraines you are having as there are several different ones that we are sensitive to. A-Z of headaches often experienced with IIH.

I wonder if you have heard of the Migracap? It has been designed by a migraine sufferer and has proven to be very effective for people who have them, and can't take pain relief. I know there are some members who have them to help with their high pressure headaches. It might be worth looking into and might help your pain.

We have lots of information and helpful booklets for you to look at, and we will soon be making four new booklets available for download. They  cover all aspects of IIH from diagnosis to surgery. As a registered charity we will be working with hospitals to make them available to patients.

Thank you for joining and if there is anything you want to ask or need help with, please don't hesitate.
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PostSubject: Re: Keren - Diagnosis Nov 13   Thu Feb 20, 2014 6:24 pm

I do suspect that there is something about my eye anatomy that led to me having proptosis INSTEAD of papilledema; I think perhaps the proptosis was in a sense protective for my vision.  can't prove it though and of course my ophtho doesn't think the proptosis is from ICP.  whatever.  I am slowly proving all the docs wrong, but I'll tell you all more about that in time.  the hints of it are in my last post on my success page.

I'll echo Heidi in that I am impressed by your persistence.  that will get you far.  I am not supposed to post links but look on PubMed and search intracranial hypertension chronic fatigue syndrome.  there is a recent paper showing that the majority of a group of CFS patients actually have IIH.  and most of those were at ICPs well in the "normal" range.  the authors point out that the way they developed those "normal" ranges must be in question.  show that to your doc when he tries to say that 230 is fine.  if you are still having symptoms then it is NOT fine.    there is also a new paper documenting cases of papilledema at "normal" ICPs.  also I saw a post on dailystrength PTC forum from someone saying that Gliacin, a form of boswellia, treated her papilledema better than Diamox and other drugs she had tried and failed.  it has been shown to reduce brain edema in brain tumor patients.  I wonder if that is something worth looking into, as it is available OTC.

feel free to private message me anytime, we have a lot in common so we should keep in touch.  I have a lot of projects I am working on relative to all this stuff, being on disability I have time for research, but eventually I should tackle the why Graves and IIH connection.

Deb
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PostSubject: Re: Keren - Diagnosis Nov 13   Thu Feb 20, 2014 7:55 pm

Thank you for the welcome and the support   thank you 

As I thought the Nuero didnt listen to me today - he considered 23 to be perfectly fine and considered the IIH suitably controlled and declared that my continued headaches and nausea, tinnitus, blurred vision etc must therefore be attributable to some other kind of headaches. (He is still convinced that the greater portion of my problem lies with his original diagnosis of migraines with some minor element being attributable to the 'surprising findings' of the 'now controlled' IIH) So he has prescribed me the general chronic pain tablet gabapentin. 
(I also asked him if this was safe for my kidneys and was the other medication i was on and he said - well your kidneys have to work to process everything from drugs to food- at the doses we are talking, you will be fine.... He didnt even ask what level of reduced kidney function i had before making that statement!) :suspect: 

Kidneys aside, gabapentin might help - but i think he is ignoring the cause to treat a few of the symptoms, and that only by luck because gabapentin is such a broad spectrum chronic pain drug! But it was potentially doctors throwing drugs at me that got my kidneys where they are now - as i have never taken more medication then prescribed! so i am understandably leery about people just adding more drugs to the mix.  

Suffice to say i will be talking to my doctor about getting a second opinion. I have found that there is a regional IIH specialist team in Birmingham that can deal with complex cases if my GP can refer me and if they accept me- i dont know if my kidney issues and thyriod problems might count as a complex case but i wont know if i dont ask - i just hope my GP knows how to use his ears better then my neurologist!  :roll:  
 fingers crossed
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PostSubject: Re: Keren - Diagnosis Nov 13   Thu Feb 20, 2014 8:03 pm

sounds like a good idea, definitely get a second opinion or just switch because I agree your doc is not taking things seriously enough.

I just remembered something that I must share with you.  one of the things I wondered about with my Graves is whether it was physically the size of my thyroid/goiter that was causing my IIH at that time.  I had a total thyroidectomy and as soon as I came out of anesthesia I felt fantastic and I did great for years.  I almost think that while I've always been prone to IIH, that the goiter put pressure on my jugular veins and reduced my CSF drainage, causing those symptoms.  at surgery they had to extend my incision and said my thyroid was huge and had wrapped itself around things inside there.  if your thyroid is really large, I wonder if a similar process could be going on with you.  I don't think that most docs understand the jugular drainage issue but there are a couple of papers online that suggest that it can be a definite issue in IIH.  definitely go to the IIH specialists and ask them about your thyroid and  your jugular veins.  maybe they can do some type of Doppler ultrasound to look at jugular flow.  I had chosen thyroidectomy because of my eye disease.  there was a paper indicating that removing it would halt the eye disease, and sometimes radioactive iodine could make the eye disease worse.
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PostSubject: Re: Keren - Diagnosis Nov 13   Fri Feb 21, 2014 12:12 am

Hi Keren, just wanted to say welcome and I am sure you will find masses of support and information here.

Keep on your campaign to get everything recognised and accepted, I have similar feedback that 25 is absolutely fine, so I understand a little of that frustration.

Take care.
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