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 [sub]Can one be cured from IIH with or without any meds etc.?[/sub]

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IdaSerafiina
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PostSubject: [sub]Can one be cured from IIH with or without any meds etc.?[/sub]   Mon May 10, 2010 7:56 pm

Hi everyone!

I haven't been diagnosed (yet) with IIH, but I'm pretty sure I do have it. As a result of my third blood patch gone wrong - I litterally felt the pressure rise to my head as I was laying on the hospital bed and the doctor had the needle in my back. Been feeling the pressure in my head ever since. Is there anyone else who has had the same experience? I would love to hear from you, if you're out there , or if you know of anyone who has had the same experience.

My real question is that CAN YOU BE CURED FROM THIS? As I'm so confused right now, as in some places it says that 9 out of 10 gets cured completely, and in some places it says that this is a lifelong disease. What have you heard? And also do I need to take any medication etc. if my eye sight doesn't go so bad that I need to?

I have continuous headache that gets worse if I do any type of excersice (get up stairs etc.), tinnitus (as in continuous whooching sound in my ears), sometimes the headache is worse during the night / morning when I get up and feed the baby (our baby is now 4 months old - my pressure-related headaches begun at his birth when they gave me an epidural that went bad . )

I would like to hear your story - and what is your experience with IIH, and do you think one can be cured from this?

Love; IS
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Heidi
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PostSubject: Re: [sub]Can one be cured from IIH with or without any meds etc.?[/sub]   Mon May 10, 2010 8:22 pm

Hi IS hug , and a very big welcome to our group, the feeling you're describing sounds like you have a low pressure headache, and yes it's common if you have had a needle inserted into the lumbar area of your spine. It's caused by the leakage or draining of cerebral spinal fluid.

I've heard from other people who have had a blood patch that it usually does the trick, but if it's not worked for you, try laying flat and taking prescribed pain medication which helps relieve the pain. Usually the low pressure can resolve itself but if it does get worse you need to see your doctor again.

IIH can't be cured as yet as there is no known cure, because there isn't a known reason for what causes it. It can be kept under control with the right medication, and if needed surgery. There is also a possibility of remission, which can come and go, it can last for years or months. Although IIH isn't curable as yet, there is research constantly being done to find a cure.

Indeed all your symptoms seem to indicate IIH, but the only way it can be diagnosed is with a lumbar puncture, have you had a lumbar puncture yet to determine if it's IIH? I started with IIH in the 3rd trimester of my pregnancy, so I do understand your concerns especially with having such a young baby.

What I want to stress to you is, that there is life with IIH, and we are here to help you have a better life with it, by learning how to adapt in order to continue a relatively normal life. It isn't all doom and gloom, and with the right Neurologist and medication, you should be able to live your life as before, but just doing things a little differently.
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PostSubject: Re: [sub]Can one be cured from IIH with or without any meds etc.?[/sub]   Tue May 11, 2010 9:39 am

Hi IS,

Research is undergoing with IIH but to date it has no direct cure, only treatment to alleviate the symptoms. Having IIH is not easy it’s like having a bullet train ride through an old gauge railway. You will hit snags along the way; it’s a matter of surviving it till the cure is found.

IIH is such a nasty nipper, he starts with your head, peppers your spine with holes (with so many LPs), I have been into a blood patch last month after failed LPs and felt 85% better, but you have to drink loads of coffee and other fluids to post your drained CSF as well as stay flat as much as possible during the day. That will help you a lot as it’s out of experience. Thereafter, if you still feel the same symptoms try to visit a versed neurologist who could identify your symptoms and address it better.

Try to snatch your vision, and countless others. Just stay strong and fight it out. As long as you can stand the ordeal, with a little optimism and sense of peace (after knowing that there is no cure to It.) everything will just be fine. Trust me, we are all here for you and we are only a message a way.

Saleh
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IdaSerafiina
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PostSubject: Re: [sub]Can one be cured from IIH with or without any meds etc.?[/sub]   Tue May 11, 2010 11:33 am

Just trying if I can get this send before writing anything else
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IdaSerafiina
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PostSubject: Re: [sub]Can one be cured from IIH with or without any meds etc.?[/sub]   Tue May 11, 2010 12:02 pm

Now it got through! Thank god, as I wrote a looong post for you and it got lost somewhere.. anyways; let's try again .

First I want to thank you both for answering and giving me much needed support and answers - it is nice to know you're not alone with this.
I do feel that this is IIH (as in acute rebound intracranial hypertension) now, as the pain shifted the last time I had an epidural blood patch done; before that I had this feeling that my brain was being pulled downwards (you all know the feeling as you have had LP's done and probably went through SIH as well as IIH?) and imediatly after the doc put the blood in to my spine I felt the pain shifted; I felt this intense pressure filling up my head. And my head has felt "heavy" and full ever since. Still the symptoms are all the same; except I have also problems with my eyes and my sight now (pain in the back of my eye occasionnally and blurry vision).

I haven't got a LP done for me yet as I am afraid of it - I am now soooo afraid of needles, that I think they have to put me to sleap before inserting any needles in me . No, but seriously, I think I need to change the neuro that's been treating me and getting that MRI and LP done so I will (hopefully) have some answers. It just seems so difficult here in Finland to get some (correct) answers as it is so rare in here that nobody (not even the docs) knows anything about this.

Let's keep in touch!

Love; IS

I'm so sorry to hear that you, Heidi, got this when you were pregnant - it must have been a hard journey to come to terms with this. I know it is difficult to take care of a small baby and have headaches at the same time; how did you manage it all? How old is your baby now? What medication has been good for you, and were you able to take any while you were pregnant?
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PostSubject: Re: [sub]Can one be cured from IIH with or without any meds etc.?[/sub]   Tue May 11, 2010 5:09 pm

I just typed a nice reply, and went to look up a reference for you, and lost my reply, so here goes again....

I have no experience with IH or IIH post pregnancy as it seems I may never become pregnant, but then again, it is in God's hands. I believe that IIH and IH is very much affected by all of our hormones, especially with our female hormones. Arn't we lucky? I have come to accept what happens, and go with the flow. Like today, I have been busy the last few days, no chance for a nap, and the pressure has gone up. I went to bed with a headache (stayed up too late last night), took an acetazolamide before bed, woke up with a worse headache. Seems the hormones are acting up, too. So, I have to get a nap in today, and take it a bit easy, so I don't get trapped with this headache going into tomorrow, or longer. That's the way I deal with it.

Regarding what I take, I am allergic to Nsaids. So, I am able to take "Salsalate" which is a prescription in the USA, for a form of aspirin for those of us allergic to aspirin. It is made differently than aspirin so I don't get an asthma attack. It does help cut the headaches a bit. It has happened that the salsalate (two 500 mg) do not work, and I just plain have to wait it out, with a pillow that is at an angle under my regular pillow, when it is high pressure. I hate the waiting out, and so far, am online rather than laying low in bed!

High pressure headaches are a pain, too, and require bed rest, says the doctor.

I guess I am lucky that I have not had any blood patches. Regarding any LP's, be sure that whoever you talk to prior to it being done, schedules you with someone who has done them before! You do not want a resident doing it, under the supervision of a doctor of some form. Also, be sure that the person who injects any pain relief during the LP is not a resident, either! I literally "got stuck" with two residents who were both doing the LP and the pain shots! There was an anesthesiologist who was telling both of them what to do under fluoroscopy. I know they had trouble with the fluoroscopy machine, and also they went outside of my spine, as I had a bruise there! Two incorrect LP's gave incorrect info! I have that in my intro story, which is long.... but passed that along here again for ya!

Fluoroscopy - means like an x-ray view is done so that they know where they are inserting the needle for the LP. That is, if they know what they are doing. They messed that up with me, too. It was just totally a MESS! And, I had no relief after. My guess is that they will not do the LP with you asleep. They need you awake in order to tell you to move the way they need you to move. There should also be a nurse to help you stay in the position they want you in, to help hold you still. It is especially difficult when you have bursitis in your hips!!! The table they put you on is not that comfortable, so in general, it is not a fun test, but if it has to be done, just get it scheduled and over with. Of note, if they put you on the side of a bed and tell you to bend forward, that is an incorrect way to have the LP done, and possibly a way to cause damage. I have to say that after two incorrect LP's and the last one being a "pain" and inaccurate, I do not want another one done! Or, I will be very picky about who does it, and I want it done under Fluoroscopy again.

Regarding the MRI, you may also want to request an MRA and MRV. Try looking it up on-line to get more on that. I tried looking it up to give you a link, and that's when I lost my post. I'll see what I can find, and post again. Believe it or not, not everyone with IH or IIH will have anything show up on an MRI. I don't know if it takes time for something to show up.

I think no matter where you are, it is hard to find a good doctor who understands IH or IIH. Even here in the US, I had a hard time finding a good doctor, when I left one. There are so many who think you are crazy. Many doctors think it is migraines, or something else, or a "woman's thing" which is so untrue! It is truly physical, and the more we can show that it is, the better. Unfortunately, it isn't always physical tests that show it is physical. We may have to keep track of our headache journals, noting symptoms, and so on, to show what's going on. Speaking of which, I gotta update mine.

Hang in there!
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PostSubject: Re: [sub]Can one be cured from IIH with or without any meds etc.?[/sub]   Tue May 11, 2010 5:24 pm

Here are some sources for you! These may actually be moved to another forum. But for now, these may be helpful for you, Ida.

Some of the sites have really small print. I have heard that there is a way to increase the font size of websites, but I don't remember how to do it.

http://www.webmd.com/brain/magnetic-resonance-imaging-mri-of-the-head



http://www.medterms.com/script/main/art.asp?articlekey=12199#



http://www.merck.com/mmhe/sec06/ch077/ch077d.html

More than MRI, MRA and MRV. Includes LP.



http://professionalradiology.com/magnetic-resonance-venography-mrv.php
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PostSubject: Re: [sub]Can one be cured from IIH with or without any meds etc.?[/sub]   Tue May 11, 2010 6:06 pm

To answer your questions IS, I went through my entire pregnancy undiagnosed, and worried about the affects on my unborn child, didn't take any pain medication, instead relying on meditation and yoga to help, as advised by my midwife.

My daughter was 8 months old when I had my diagnosis, and precribed Amiloride and Furosemide for the first year, and then put on Acetazolomide, now known as Diamox, which I was on for 10 years, then put on Co-Amilofruse which I still take. Apart from the side effects of the Acetazolmide, I did quite well, and had lumbar punctures when needed. I even managed remission for a good 5 years. I managed to go back to college, then work first part time, moving to full time later on, and until my daughter was 8 brought her up on my own.

My daughter is now 21, and I can say has been an absolute rock for me, and doesn't feel that my having IIH, had a big impact on her life growing up at all. She is just about to graduate from college, after studying forensic and advanced science. Knowing that she has come all this way, despite my IIH, makes me very proud, and I hope it brings you comfort to know this, and show that you too can come through this and out the other side hug

As to the mode of lumbar puncture, I have had it done both sat up leaning over and in the foetal position. I have had both good and bad experiences of both, and I think it's more down to the dexterity and experience of the doctor who performs it, as to whether your experience is good or not. However, don't let this worry you too much, as we are all different with different threshholds of pain tolerance. It's similar to having an epidural, the only difference being they take fluid out.

You can find lots of information about lumbar punctures and other things to do with IIH under our Recommendations Category then look in Informational Links We also have some coping suggestions you might want to look at.
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IdaSerafiina
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PostSubject: Re: [sub]Can one be cured from IIH with or without any meds etc.?[/sub]   Tue May 11, 2010 7:22 pm

Ooooh, thank you so much both, Missy and Heidi for your long posts (texts) - it's a big consolation for me to hear such success stories ! Thank you for being there for me . It was especially nice to hear, Heidi, that you managed to do so well with your daughter, and that your IIH was gone for 5 years. Missy, I promise I will demand to have an experienced doctor to do my LP when it's time for that; I can imagine that it can be pure torture if someone inexperienced is taking it! I'm thinking that I'm all set for lifetime as it comes to malpractise when doctors are concerned - as all this mess begun for me the moment when that doc took a LP from me with an epidural needle during my childbirth.. ofcourse it was unintentional, but still. If I could take that moment back, I would have been brave and not take any painmedication involving my spine.

I will look into those links you both put here for me, thank you for those!

Love; IS
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