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 IIH flare at end of vacation

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Crg553
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PostSubject: IIH flare at end of vacation   Sat Jul 16, 2016 11:57 pm

Hey y'all! Hope you all had a wonderful 4th!
We left on the 4th for southern Indiana. Took roughly 3 hours to get there, the entire family. (In laws included) We had a TON of fun! Went to Kentucky Kingdom Tuesday, relaxed and swam Wednesday (thanks rain), went to Indiana Caverns Thursday (SO much fun!) Woke up Friday to get ready to go and my peripheral vision was very close to gone, head was killing me, eyes were beating out of my skull, felt nauseous. I immediately took 4 ibuprofen and told my DH sorry but you have to drive home! I laid back and tried to 'enjoy' the stormy trip home. 
The only thing I can think it was is the stairs at the cave on Thursday. There were about 40 and a huge incline to get out. I hadn't had too many issues with stairs or inclines for a while, thought it was just my body adjusting to Diamox. 
Since all of this I have been to the ER and to my neuro. Neuro did LP and the pressure was at 23 and still rising when he said your high. When he dx me it was 21. I am not sure how much he took but there were two tubes of fluid and he checked my pressure after and its was a low normal he said 8. I've had a head ache since so just trying to take it easy. 
He also maxed out my Diamox so I am take 2000 mg a day, was on 1500 mg/day. I asked him what else I can do, he said, "Sadly, nothing!" 
I go to see a new neuro for a 'second opinion' on the 17th of August. I just don't understand how climbing some stairs can cause my pressure to increase and stay that way. I thought the meds were working. I have been on them since March and that is when the LP was performed last, making my dx. Im hoping it was just a fluke. fingers crossed
Has anyone else ever had this happen? 
I felt out of breath after walking up the stairs but I didn't get any 'brain fog' or light headed or vision changes. Nothing! Sorry I've been absent. This is the first day I've been able to actually participate in life since Friday the 8th.


Measure your life by acts of goodness, not by years!
Take care y'all!
C
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Crg553
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PostSubject: Re: IIH flare at end of vacation   Mon Jul 18, 2016 1:28 am

I'm still dealing with a pretty bad low pressure headache. I love that I can drink coffee but am hating STILL being stuck in bed. Went front in bed with head elevated and ice packs due to high pressure pain and dizziness. Now i'm in bed flat with horrible nausea and low pressure pain. Is there a 'happy medium'? haha! I know my dr drained too much, when he said i was at 8, i was like oh crap..... thats too low! The LP was on the morning of the 15th and it is the evening of the 17th. I just wonder how long it will take before I get back to a 'normal pressure?  
I haven't taken my diamox bc it was so low. That may be bad, but honestly I feel like an 8 was way too low. I did take it last night just one though, I think that may be why I have felt bad today. I honestly don't know. I wish the "neurologist" I'm seeing was a board certified neuro and not a pain specialist with a background in neuro. I will see a neuro in August but thats so far away!


Measure your life by acts of goodness, not by years!
Take care y'all!
C
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Sophiasmom
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PostSubject: Re: IIH flare at end of vacation   Mon Jul 18, 2016 5:25 am

the neuro won't necessarily be that much better so.....
sorry you are hurting so badly.  it might be the storm.  but is the weather better now?  you should have adjusted by now, but maybe it's all low pressure stuff now.  my son always went back to his baseline within 2 days, so hopefully tomorrow will be better.  if it doesn't get better in a few more days then you have to be concerned about a leak, if your symptoms are triggered by standing up.  anyway, if it was the stairs, it should have started right away.  although, when I was really sick, if I did something really ambitious like go to a concert, I would be in bed the next day.  if you are triggered by chemical exposures it could have been that, since you were traveling and who knows what you got exposed to.  the fact you woke up like that, suggests again that sleep apnea or sleep position could play a role.  you were sleeping somewhere different, think about those differences for clues.  if I go sleep in a toxic hotel room I will wake in the middle of the night with a headache.  now I have an RV so I don't have to sleep in hotel rooms anymore.  if I had to sit in the car next to my relative wearing perfume or scented whatever I would be ill within 20 minutes.  I think that really anything on that trip could have triggered you.  the thing is you were out of your normal environment in which you have adapted and been OK.  most people with IIH are very sensitive to their environments in one way or another or several.  sound, smell, proximity, lights, barometric pressure, stress whether good or bad.  my adrenals are whacked and I suspect it's related to the IIH somehow.  too much stimulation of any kind can make me ill, and when my ICP was 23 at baseline, that stimulation could lead to me being very ill for a good 24 hours.  how long you are sick after this type of thing, may be an individual thing.  our ICP spikes and plateaus.  I will still spike but will not go as high or plateau as high or as long.  your plateau may last longer than mine.  it depends how long it takes you to go back to baseline once you reach your normal environment.  hope that all makes sense.
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PostSubject: Re: IIH flare at end of vacation   Mon Jul 18, 2016 5:29 am

I don't think the docs understand that sensitivity to the environment or the way our ICP spikes and plateaus.  they will look at a borderline number and not realize that it's a snapshot in time, that it is probably a low point/baseline and that spikes are higher.
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Crg553
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PostSubject: Re: IIH flare at end of vacation   Mon Jul 18, 2016 5:43 pm

Hello! Thank you for the quick response!! 
There was another big storm going through yesterday and it is storming today as well so i guess that is why?? I feel a TON better than I did before I went and had the LP. Just some low pressure pain off and on when I stand too fast. 
I just found it extremely odd that I was there for 4 entire days with no issues, then the day we are coming home (Friday the 8th, which was stormy) I had the worst one I have had in a long time. It lasted, well I went to dr the fallowing Friday, he did the lp and it has been all low pressure since. 
the 8th was the starting point i think, the 9th and 10th (sat & sun) were a lot more painful w/ vision issues. Monday the 11th wasn't as painful but still had vision issues, the pain felt like it stayed that way until the fallowing Friday. I got to the point that i wasn't talking, i was afraid of sneezing, i couldn't even clear my throat without my head feeling like it was going to explode. Its just so odd to me, clearly I'm not going to be traveling for a while! Now I just hope the storms will end! 
I've gotten the 'ambitious illness' several times since all of it started. My 'time outs' normally only lasted about 24-48hrs, but it would be about 16-18 hrs of me sleeping first, fallowed by an exhausted zombie that looked like me walking around our house.


Measure your life by acts of goodness, not by years!
Take care y'all!
C
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Sophiasmom
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PostSubject: Re: IIH flare at end of vacation   Tue Jul 19, 2016 5:18 am

I've also had issues traveling, from driving up in elevation, and also from exposure to vehicle exhaust.  I get sick every time I have to drive through LA, for example.  if you were stuck in traffic on the way back, that could have made the difference even if it was the same road you came down on.
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PostSubject: Re: IIH flare at end of vacation   Fri Jul 29, 2016 5:50 pm

Despite having a shunt, bilateral subtemporal decompressions and taking co-amilofruse, I still suffer high pressure during overcast, heavy rain and stormy weather. I've also found I suffer intermittent hearing loss during those times too, which is caused by the pressure on my ears. 


Ever since I started with IIH, I can't tolerate heights at all either. I developed allergies  to things that weren't an issue before the IIH, It does make sense that intracranial pressure can affect the parts of our brain that controls all these things.  
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Crg553
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PostSubject: Re: IIH flare at end of vacation   Sat Jul 30, 2016 1:37 am

I am feeling a ton better now! I will definitely be paying better attention to my body and I won't be taking any trips too far from home! I took almost a full week to recoup from that LP, I knew it was too low when I sat up, but what could be done?! Can't exactly say 'put it back in'.... I still feel a ton better than I did before the LP so I know I needed it. My vision has been good for the most part. I had a little issue today, woke with a headache. I believe I slept late bc it was stormy today so I am pretty sure that's all the problem was. I'm slowly getting things back together at home too. After almost 4 weeks of close to 75% bed rest our house looks like a tornado hit it, I'm sure you all can understand that.
I do feel rather blessed bc I haven't had to have an LP since March so I feel that barring any more triggers hopefully I can make it another 4 or hopefully more.I have had issues with my eyes off and on since March but I was waiting to speak with the new neurologist about it to see what he said. His office seems to understand the situation and they actually return my phone calls unlike my current dr. I haven't even seen him yet either so, that to me is already a major plus Smile ! I thank you for your help and guidance! I am hoping that soon I will have this under control, if not completely, at the very least for the most part. My girls start school (home-school/online) August 10th so I still have a lot more work to get everything in line. I do not watch my niece and nephew any more bc their parents were having to find someone else when I wasn't feeling good and it was such a problem, Its really hard to not feel to blame although I know it isn't my fault.


Measure your life by acts of goodness, not by years!
Take care y'all!
C
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PostSubject: Re: IIH flare at end of vacation   Sat Jul 30, 2016 4:14 am

don't feel guilty and do draw the line on what you can and cannot do.  for example I don't know why your house would be a mess just because you were in bed.  I think you said you have a husband?  I hope he isn't expecting you to catch up on all "your" work, why can't he help out when you are ill?  
I'm glad you are feeling better!
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PostSubject: Re: IIH flare at end of vacation   Sat Jul 30, 2016 9:12 pm

Oh yes! He helps as much as he can! I have a slight case of OCD so things are never actually 'clean' unless I am the one who cleans them/it. I try very hard to let someone else handle it but the control freak in me gets out and I really can't keep it at bay. I am on medication for it which helps, so normally I am ok with it, but when I am feeling the slightest bit of stress it is like the gates of hell open up. So, being down and out with this IIH has stirred up the OCD a little more than I can handle. I am doing a lot better now that I am on medication and I have learned a few ways to help control it and a few outlets. Cleaning is a true stress reliever for me, it's odd but I'll take that over drugs and all the other bad things out there any day! LOL!
I have had to learn to control myself on what I can and cannot do, and the guilt from not doing is something I will probably always struggle with bc I am just one of those people. Maybe one day I will get better at it....
I thank you two for your help and advise through this situation! I love this forum and both of you for all of your help! I don't know what I would do without you all! Have a great pain free day!


Measure your life by acts of goodness, not by years!
Take care y'all!
C
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