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Spookess
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PostSubject: New to forum-just diagnosed   Wed Feb 08, 2017 8:22 am

I've had the pulsatile whooshing sound in my right ear since October 2016 and am waiting for my ENT appointment at the hospital (which was requested by my GP on 10th December 2016!). About 3 or 4 weeks ago my vision went funny in that if I looked at something, the left side of my vision was bulging out like someone was stretching the picture from the middle. By this time the whooshing had gotten so loud i could barely hear. I found wearing an earplug in the affected ear would dull the noise a little, or if I pushed my finger into the end of my jaw under my right ear the noise would subside, but I couldn't do it for long or I would feel like I was about to pass out.
Got concerned that my sight issue was getting worse so went to see an optician on Saturday 4th Feb. She sent me straight to the on call eye doctor at my local hospital because of how my optic nerve looked.
The on call eye doctor looked at my eyes and decided I needed to go to the AMU unit.
Went straight there and they did blood tests and sent me home asking that I return at 9am the next dayfor a brain MRI.
Had the brain MRI on 5th Feb from which they said the results were unremarkable which pointed them to IIH. They did a lumbar puncture and my opening pressure was 39cm H2O. He drained my CSF until it got down to 20cm H2O. As he was doing the LP the whooshing sound got less and less and by the next morning it had almost most completely gone. My 'bulging' vision was still there but had moved more toward the middle now, but I was told it would take a day or two for the pressures to level out.
Since the LP I've had pretty much constant migraine, but almost most least the whooshing had almost completely stopped. That is until this morning.

I have woken up and the whooshing is back just as loud as it was before. My vision it's still bulging, but not AS bad as before, but still there.
The opthamologist at the hospital put me on tablets on Monday 6th Feb saying he was starting me on a higher dose so that they could wean me down to the level i need.

As I am new to IIH, I have some questions that I'm hoping someone/some people can help me with;
1) is this condition forever?
2) do I have to take medication forever?
3) is it possible that my CSF levels have gone back up resulting in the whooshing in my ear again?
4) how do they work out your pressure level to keep an eye on it? More LP's? (Hope not, it killed!)
5) are there any other symptoms associated with IIH? I have been sleeping a lot more, unable to wake up in the morning (sleeping through multiple alarms) and also feel a bit like I've got headrush like I've stood up too quickly.
6) I have been told I have to see a neuro-opthamologist. How do they differ from the normal opthamologists?
Hope you can help?
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Sophiasmom
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PostSubject: Re: New to forum-just diagnosed   Wed Feb 08, 2017 7:27 pm

hi, welcome to the group!  sorry about your IIH diagnosis.  it is a struggle for most of us, and it can be lifelong.  some people get shunts and do well, others have complications.  it sounds like you would be a candidate for a shunt if you don't respond to medication.  if you are overweight at all it's a good idea to lose weight if you can.  for me my weight doesn't seem to be an issue.  I went into remission after jaw surgery.  it sounds like you ought to be evaluated for sleep apnea.  mine is very mild but it was making me pretty sick, so don't rule it out if you don't snore, it can be subtle.  make sure your docs rule out secondary causes, make sure you have a brain and a neck MRV to look at the vasculature.  make sure you get a blood workup for any hormonal problems and hypercoagulation problems, autoimmune disease.  I would recommend going to a very natural diet that is gluten free.  for many of us gluten seems to affect brain swelling, although the docs don't understand this part of it.  go low sodium too.  no artificial sweeteners or seasonings; MSG hides in food and is a big problem.  if you have been taking any medications like Accutane or tetracyclines, these can trigger IIH, as can birth control hormones.  sometimes stopping these can allow the condition to regress.  another word of advice: don't hold your breath or cry: the Valsalva maneuver can increase ICP and trigger badness.  when I was ill just starting to cry a little bit could cause instant ice pick headache and it would take 24 hours to recover from it.
see below specific answers in caps.
Deb


1) is this condition forever?  MAYBE, DEPENDS ON MANY FACTORS
2) do I have to take medication forever?  MAYBE, DEPENDS IF YOU GET A SHUNT OR FIND A SECONDARY CAUSE THAT YOU CAN TREAT
3) is it possible that my CSF levels have gone back up resulting in the whooshing in my ear again?   YES, IT'S LIKELY.  ICP CAN GO UP WITHIN A FEW DAYS AFTER THE LP.
4) how do they work out your pressure level to keep an eye on it? More LP's? (Hope not, it killed!)  LP IS THE ONLY WAY TO TELL
5) are there any other symptoms associated with IIH? I have been sleeping a lot more, unable to wake up in the morning (sleeping through multiple alarms) and also feel a bit like I've got headrush like I've stood up too quickly. 
OBSTRUCTIVE SLEEP APNEA CAN CAUSE IIH, AND IT CAN CAUSE ALL MANNER OF SLEEP PROBLEMS, INCLUDING HYPERSOMNIA AS YOU DESCRIBE.  THE HEADRUSH IS SOMETHING WE HAVE EXPERIENCED ALSO.  MANY OF US HAVE POTS-LIKE SYMPTOMS, WITH BLOOD PRESSURE DROPPING UPON STANDING UP.
6) I have been told I have to see a neuro-opthamologist. How do they differ from the normal opthamologists?  THEY ARE BETTER AT ADDRESSING THE NEUROLOGICAL ISSUES WITH THE OPTIC NERVE.  IT'S BETTER TO SEE ONE IF YOU CAN.  THEY CAN DO THE ONSF PROCEDURE TO SPARE VISION IF NECESSARY.
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PostSubject: Re: New to forum-just diagnosed   Wed Feb 08, 2017 7:40 pm

Thanks for the reply thank you .
 I think I am going to have to make and appointment with my GP to go through everything you've suggested. 

One side effect of the Acetazolamide tablets they've given me is that drinking Pepsi max tastes like battery acid!!! As that's all I drink besides coffee and tea I'm genuinely gutted  censored
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PostSubject: Re: New to forum-just diagnosed   Wed Feb 08, 2017 7:52 pm

Ha, great minds Deb! I'm sure she already answered a lot of your questions, but I'm going to post this since I already typed it up. I didn't read Deb's post, but I'm guessing they're similar...

Welcome to the forum, I'll do my best to answer your questions..
1) Some people have just 1 episode in their lifetime, but others have had multiple episodes or struggled throughout their lives. Usually depends on whether IIH is the primary diagnosis or secondary to another condition.
2) Medication is the initial treatment, but there are other procedures available if it doesn't work. You will need to treat symptoms as long as they present. Preserving vision is the primary goal.
3) Yes, your CSF levels will build back up and whooshing suggests that your pressure is high again.
4) LP is the only way to measure CSF levels, but they can adjust medications now that IIH has been diagnosed. LP is used to confirm diagnosis and drain CSF, as needed.
5) There are many symptoms associated with IIH. Here's a link to one of the informational guides we provide.. http://www.ihaveiih.com/download.forum?id=79
6) Ophthalmologists are medical doctors that specialize in eye and vision care, while neuro-ophthalmologists focus on diseases of the nervous system that affect eyes and vision.

I hope this helps. Check out our site and let us know if you have any other questions.
Julie
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PostSubject: Re: New to forum-just diagnosed   Thu Feb 09, 2017 3:41 am

hi Spook;
well, if I drank tons of PepsiMax I would not be surprised to fall ill.  the artificial sweeteners in diet soda can lead to stimulation of glutamate receptors which can cause headaches and theoretically brain swelling.  a very bad choice and the Diamox is doing you a favor here.  definitely stop the artificial stuff.  most sodas also contain high amounts of phosphates, which have the effect on the body of depleting magnesium.  low magnesium can cause all manner of ills.  but magnesium can prevent migraines and also can reduce brain swelling.  I supplement large amounts of it daily and would be doing very poorly if I did not.  I highly recommend that you clean up your diet.  there are some of us with IIH who actually respond very well to simply going to an all natural diet.  when this all first started, diet and vitamins turned things around for me for a couple of years.  later it wasn't enough, but at first it made a big difference.
Deb
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PostSubject: Re: New to forum-just diagnosed   Thu Feb 09, 2017 3:42 am

also check out ihrfoundation.org
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Spookess
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PostSubject: Re: New to forum-just diagnosed   Thu Feb 09, 2017 6:22 pm

Thanks for all the replies
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PostSubject: Re: New to forum-just diagnosed   Thu Feb 09, 2017 6:23 pm

Thanks for all the replies thank you 
I totally get what you are saying about Pepsi sophiasmom, but been drinking that for a fair few years and it actually stopped the migraines that I used to get quite regularly. Stopped them, that is, until recently. Going to have to look at alternatives anyway as the taste of it now is vile! Bleurgh! 
I'm a bit worried as I've never been good with diets of any kind. I'll do well for a few weeks then it all goes to pot. The thought of doing some form of diet for the forseeable actually freaks me out if I'm honest. I understand that it will be the best thing for me, and that you that have mentioned it are speaking from experience, but I really do think it's going to be a struggle  Help
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PostSubject: Re: New to forum-just diagnosed   Fri Feb 10, 2017 1:03 am

oh yeah, I get that.  I drink Zevia and vitamin water, they are pretty good.  not sure what they taste like on Diamox though.  I could never tolerate more than 125mg.  
nothing is worse than IIH, probably not even death.  so once you find a dietary change that helps, you won't have any trouble sticking to it.  I recommend just trying gluten free first.  good luck!
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PostSubject: Re: New to forum-just diagnosed   Fri Feb 10, 2017 8:13 pm

When I was on Diamox, anything carbonated caused that nasty bitter acid..yuck!!! I think I drank a lot of iced and hot tea. The caffeine can help migraines and low pressure headaches because it restricts the enlarging blood vessels, but can be counterproductive for high pressure because it's a diuretic and can take too much fluid too quickly. All my surgeons have suggested avoiding it unless necessary, but I use it more than I should. It also doesn't work well, if used routinely.

As far as diet, do the best you can. Processed foods seem to have the biggest negative effect..cause inflammation and other issues because contain allergens, sugar, etc. You will really function better if at a healthy weight or fueling your body with healthier ingredients, but it doesn't always impact your IIH. It can also be difficult for some people with IIH to lose weight, so just try to be as healthy as you can.

I usually do better by completely eliminating something. For instance, I'm a vegetarian and eliminating meat has limited the food available to me. You can be an unhealthy vegetarian, but it gets a little easier once you realize fast food places use the same grease for fries and chicken, etc. Some people also start small. You could start by finding a healthier option for soda, since it's already bothering you. Then, move onto candy or chips or something else that you eat too much and find a healthier alternative like fruit or popcorn. You may also try an elimination diet, where you scale back everything and add foods back one group at a time. This can be helpful when trying to identify things that trigger your symptoms. I really think you'll be surprised once you start, but you can always come back here if you need support or suggestions.

Good luck!!!
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PostSubject: Re: New to forum-just diagnosed   Sat Feb 11, 2017 4:03 am

I've found that I can drink diet lemonade with sugar free blackcurrant squash. It still doesn't taste quite right, but nowhere near as nasty as the Pepsi max did! Yuk!
I realised today how little information I was given when diagnosed, so am trawling the Internet for details but that can be just plain confusing! So far I've found sites saying to eat 5 portions of fruit (or veg) a day, but then others say to avoid most fruit as they contain too much vitamin A, and to avoid tomatoes, sweet potatoes, carrots and leafy greens. And some sites say eating nuts can help symptoms but other sites say they are a no no! How are people supposed to know what's best when there's so much conflicting information out there?
I was going to go to my GP to find out more details, but now wondering if he'll be able to tell me anything?

Another thing. I have an appointment with the Ear Nose and Throat department at the hospital at the end of this month which my GP made because the whooshing in my ear was so loud it was making it hard to hear certain noises/sounds. Now I (think) I know the whooshing is from the IIH should I still go to the appointment, or cancel it because it will be a waste of time?
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PostSubject: Re: New to forum-just diagnosed   Sat Feb 11, 2017 6:46 pm

go to the ENT appt because you can ask him to address whether you have an airway problem and ask him to order the sleep study.  there could be something simple he could address with surgery to improve your airway, like turbinate reduction or fixing a deviated nasal septum.  yes I think the pulsatile tinnitus mystery has been solved but the ENT can help you with what could be contributing to the IIH.
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PostSubject: Re: New to forum-just diagnosed   Sat Feb 11, 2017 7:24 pm

Thanks sophiasmom  thank you
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PostSubject: Re: New to forum-just diagnosed   Mon Feb 13, 2017 4:38 pm

I agree, keep the appointment with the ENT. They can identify the obstructed airways, as Deb mentioned. They can also identify other triggers like sinus or allergy problems. They all can contribute to higher pressure, so always good to check.

As far as the food, I did better with the elimination diet and adding things back slowly. I'm pretty sensitive (as most people with IIH) and had some sort of reaction fairly quickly. For instance, I can't juice spinach. I can eat it, but if I juice it I have a gout flare up. Sugar makes me ache usually within hours, so I try to avoid it as much as possible. I actually try to avoid most processed foods, but it's not always easy especially on days I'm not feeling well. It also hasn't helped my weight much, but I feel better..sleep better, don't crash in the afternoons, don't ache as much, etc. It all helps me deal with the IIH stuff better.

Hope that helps!
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