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 I'm doing much better now.

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Sophiasmom
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PostSubject: I'm doing much better now.   Wed Apr 10, 2013 3:16 am

I had a surgical procedure in December and I am much much
better. 90-95% better. It is a long recovery from this procedure so
I've been watching my symptoms to make sure the effect is real, so I know what
is really going on. But I think it's
time to let you all know about it. Sorry
ahead of time, this is long, but it's been a long time coming.





I had a maxillomandibular advancement, or MMA. It is a jaw surgery where they move both
upper and lower jaws forwards, to treat obstructive sleep apnea (OSA). My airway is now double the size it was
before, with a concomitant decrease in airway resistance by a factor of
14. My mandible was moved forwards by 1
cm. As a result I no longer use my
BiPAP. I still have a little swelling but
if I use Afrin at bedtime I wake up pretty clear usually. I did this because I felt that PAP therapy,
while it did help my IIH, in some ways it was working against me and I would
never get ahead of the curve as long as I had to use it. I knew that my worst trigger for my IIH was
my OSA, and that I needed to find a way to treat it that did not involve
blowing pressure into my face. When the
pressure in your brain is elevated, this just seemed intuitively wrong to me. And because any PAP infraction would make me
feel awful, I had to work very hard to make it perfect every night, and could
not imagine doing all of that when I am 80 yrs old. I also felt that the airway problem that was
causing the OSA was also causing daytime problems. I had already had tongue surgery because it
got to the point I felt like I was suffocating all the time. The suffocating feeling went away but I still
had an abnormal neck posture and my airway was still narrow, I still had OSA. I could see my future when I looked at my
mother, who has severe cervical spine degeneration and chronic radiating pain,
as well as trigeminal neuralgia. I knew
I had to do something drastic or that would be my ultimate fate. And if you think of the neck as a finite
compartment, if there is something limiting airway space, what is it doing to
your jugular veins? I think it must all
be connected.






So, I haven't had a follow up sleep study yet, and won't
until November. But I used to wake up
like death if I didn't treat my OSA, and now I can wake up fine. I can sometimes tell that there has been some
OSA, if I have nasal congestion or a sore throat when I wake. In February this was more prominent and I was
having palpitations, but those are gone now.
But surprisingly, my IIH seemed to improve faster than my OSA. If you read Alperin's paper published in
January which I previously posted about,
you have the clues to why this happened.
They found that in IIH patients, there is brain edema and decreased
jugular venous drainage. Even though my
CTA/V neck was normal prior to the MMA, I think that moving my mandible
forwards by 1cm took the pressure off my jugular veins and allowed them to
drain better. I still have the brain
edema component, but it must be triggered.
My biggest trigger now that my OSA is mostly gone, is
chemicals/odors. If I can avoid them, I
feel fantastic. I have great energy, I'm
exercising, I've lost weight without effort, I'm sleeping better, I've cut out
most of the meds I was on before, and my headache frequency went from 8 per
month to 2 per month, and those are generally mild. For a year before surgery, my worst day was
cycle day 2, to the point I would try to stay home on that day to avoid a
trigger or I would end up in bed or having scary episodes like almost losing
consciousness. For the last two cycles,
cycle day 2 has been a good day! I still
tend to get a headache around my period, and maybe a little off the day or so
before. But the pattern has completely
altered. It feels like my natural
hormones are coming back. I can sing
without getting lightheaded or feeling weak, I can unload the dishwasher
without that logy feeling in my head; the vestibular issues are much better, if
not gone. I've had crying jags and they
don't take me down for 24 hours. My
father says when I speak I am more animated and I speak faster and move my head
around more than I used to. He didn't
realize it had been gone until it came back, and now he knows I was really
sick. It is as if the valsalva trigger
is gone, as if this was directly related to the jugular venous drainage issue,
not the brain edema issue. On the days I
haven't used afrin the night before, I might wake a little foggy but it clears
with a Lasix. But on those days I do
seem to be more easily triggered by chemicals, as if the mild residual OSA
created a higher baseline in terms of brain edema. I have had a few bad days from the chemical
triggers, but for the most part when I do get triggered, the fog will pass
after 1-2 hours, many times by itself, sometimes with a Lasix. It used to be that the ICP would just build
and progress and it would ruin my day.
It is as if the trigger makes my brain swell, but then the pressure can
drain out because my jugulars have less resistance in them. I still have severe odor hypersensitivity and
chemical sensitivity, and my surgeon told me that his patients with these
problems do not see improvement in them after MMA. But for me, treating my OSA definitively
without PAP, with the MMA to move my jaw anatomy back to where it was
originally supposed to be such that it is no longer putting pressure on my
jugular veins, has been miraculous. One
thing you must all keep in mind is that for a long time, I thought my problem
was just OSA. I was confused about why I
was so sick with my OSA when others who had it were not. And my OSA was so mild that it could not be
detected by regular sleep labs; I had to go to Stanford to get diagnosed. I did not snore. As mild as it was, it was significantly
elevating my ICP, probably because of the jugular venous drainage issue. Yes, the prevalence of OSA is no different in
us than in the general population, but for us, it seems clear to me that sleep
hypoventilation must be eliminated or it will raise ICP. I believe that to not deal with this issue is
like not doing the diet when you are a diabetic. It is 3 steps forward, 2 steps back. And I don't think it is good enough to be
titrated on PAP to an AHI of less than 5.
I think we, like children, should be titrated to an AHI of less than 1,
and our sleep studies should be considered positive if the AHI is greater than
1. (AHI is apnea-hypopnea index.)






Now I am working on figuring out how to block the brain
edema formation. If I can block the
trigger, that will be the final piece.
I'll keep you posted!



Deb
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PostSubject: Re: I'm doing much better now.   Wed Apr 10, 2013 3:19 am

sorry about the way that cut and pasted!
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PostSubject: Re: I'm doing much better now.   Wed Apr 10, 2013 4:12 am

Wow Deb, what a fantastic story. I hope you are keeping detailed notes and will soon be writing a paper about this. The changes are huge, the benefits profound. I do hope that the improvements will continue and that we will hear more and more about this.
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PostSubject: Re: I'm doing much better now.   Wed Apr 10, 2013 3:36 pm

Deb, I'm gald you finally found something that's giving you some relief! Thanks for sharing your finds..please keep us posted.

Fingers crossed it all continues!!!!
Take care,
Julie
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PostSubject: Re: I'm doing much better now.   Sat Apr 13, 2013 2:00 am

Yyyyaaaaaaayyyyyyy!!! This is so awesome! We all just have to have faith and keep working at it :well done
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PostSubject: Re: I'm doing much better now.   Sat Jul 06, 2013 5:23 am

Another update:
I just realized I haven't had a headache since June 9; almost a month!  and I have been feeling NORMAL for about 10 days now, I think.  I've lost track!  I've had chemical exposures but maybe one mild reaction a week ago that passed quickly.  the symptom I get at this point is mild brain fog.  but I haven't even had that in at least a week, and I don't even know why.  I am now 7 months post jaw surgery.  I've been waking up completely fine.  used to have just a little bit of fog upon awakening and bought a little trampoline because I'd noticed that even just 5 minutes of light exercise would lead to clearing of my fog.  while I could not exercise before jaw surgery, would get short of breath and lightheaded, now I can and if I have fog and force myself to do it, the exercise will help!   I found a reference, that I cannot find right now, that said that lymphatic drainage contributes something like 30-40% of CSF drainage?  the only reference I can find now with percentages says that in the rat lymphatics account for 50% of CSF absorption!  and exercise improves lymphatic drainage.  I used to support anyone with IIH who found it impossible to exercise, and I still do, but what I would say is; just try to walk a little bit.  try to keep moving.  I think there's evidence it has to help.  as long as you are not holding your breath and not doing something that will raise your blood pressure, it shouldn't hurt you.
the other thing I've been doing that seems to really make a difference is I've been taking a beta blocker.  my BP usually isn't that high but under stress it can spike, and then I get sick.  so I am trying to keep it below 120/80 and the beta blocker prevents any spikes.  if I have forgotten a dose, I was more prone to developing fog.  although in the last week it just doesn't seem to make a difference.  I'm just better.
anyway, just wanted to give a quick update.
Deb
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PostSubject: Re: I'm doing much better now.   Sat Jul 06, 2013 6:18 pm

Deb that is good news! I'm so glad you're doing much better and I'm sure that your update will be very uplifting for the other members. hug
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PostSubject: Re: I'm doing much better now.   Sat Jul 06, 2013 7:43 pm

This is great news.   With as awful a time you were having this is a complete 180!!  
Please do keep giving us updates.  I always look forward to reading the latest news, especially when it's such good news!
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PostSubject: Re: I'm doing much better now.   Sun Jul 07, 2013 9:19 pm

Very awesome!!! The recovery stories give me hope!!
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PostSubject: Re: I'm doing much better now.   Thu Jul 11, 2013 9:22 pm

That is great news!!! Thanks for sharing Deb!
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PostSubject: Re: I'm doing much better now.   Fri Nov 22, 2013 9:33 pm

OK, another update since my first post in this thread back in April.
I have weaned completely off my Hydrocortisone, over 2.5 months ago.  this was for the orthostatic hypotension that I had without it, and I had over the last 3 years tried to wean it unsuccessfully 3 times.  I am no longer orthostatic without the hydrocortisone.  whether it was POTS or what, I know many others with IIH also have had these symptoms.  the jaw surgery cured this, whether it was because of the improvement in my sleep apnea or in my IIH. 

I've lost 26 lb spontaneously in the last year, with just being able to exercise again.  my thyroid hormone dose has really changed and I'm not sure why, but it seems like there have been many hormonal changes after the jaw surgery that I can't completely define.  I joined a peak climbing group and am trying to get my life back.  I still do have episodes of brain fog and I have to be very careful, but my headaches are maybe 2 per month, and mild and easily managed with ibuprofen.

my dad arrived for the holidays this week and he thinks my eyes have gone back in a little bit (I have proptosis) and he says I look like I did 20 years ago.  I think that's probably an exaggeration, maybe.  but things do seem to keep getting better since my jaw surgery.

Deb
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PostSubject: Re: I'm doing much better now.   Sat Nov 23, 2013 4:14 am

Wow Deb, this sounds like a home run to me.
I am so glad that you are feeling better and getting your life back.  That is wonderful news.
Do you think you will be able to go back to work or is it still too early to tell?
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PostSubject: Re: I'm doing much better now.   Sat Nov 23, 2013 7:25 am

the main thing keeping me from working is my chemical sensitivity, which hasn't changed.  I react to someone being in my home with residual scent from laundry detergent in their clothes.  and the symptoms are the ICP symptoms.  can't function like that.  it's not as bad as I used to get before jaw surgery, but it's still significant if I don't get away quickly enough.  so 8 hours a day in a bad environment is a no go.  but I used to wake up like that or worse before the jaw surgery.

the crazy thing is I just found out that I still have sleep apnea.  my AHI is cut in half, and I'm getting massively more deep sleep than I used to, so it's a lot better.  but I really believe that I'm better mostly because I think the mandibular advancement improved my jugular venous drainage and directly improved my IIH.
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PostSubject: Re: I'm doing much better now.   Wed Nov 27, 2013 3:08 am

Interesting about still having the SA.  Will you be trying something else to try to help that?  Sounds like your quality of life is so much better now than it was, maybe it's time to just take and break and recoup and regroup??
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PostSubject: Re: I'm doing much better now.   Wed Nov 27, 2013 5:30 am

yeah, I really hated CPAP/BiPAP.  I don't want to do that again.  I feel SO much better and if I'm a little off I take Lasix.  the thing is that, before jaw surgery, the way I felt could be completely aborted with prednisone.  as if, the OSA wasn't causing that much trouble at the mild level it's been at, and it's even milder now, but it was just it's contribution to the IIH.  my valsalva trigger is completely gone with the mandibular advancement, and I almost think that was the biggest problem.  the OSA must have been triggering that, and the PAP was triggering that, so there wasn't a whole lot of difference either way.  well BiPAP was better but not like I am now.  I knew I had to get off the PAP.

so, yeah, I am in regrouping mode right now.  just trying to get back in shape and get somewhat of a life back, figure out what's left.  a great deal of my issues are just gone.  maybe at some point I'll consider a mandibular advancement device.  or even my old tongue retaining device.  used to be I couldn't sleep for 15 min without it, but now I could probably tolerate something like that if it popped off at night.  but really, I think the biggest issue is the palate and there's no way to deal with that without PAP.  ugh.  perhaps the best way to sort it out would be sleep endoscopy.
I do think that by the time I'm 70 I'll just get a tracheostomy.  either that or go into full on dementia.  I just think that with IIH we don't have any wiggle room.  I'm surprised I'm doing as well as I am with my AHI at 8.5.  but I suspect I've never actually felt normal, that I don't know what that is.
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PostSubject: Re: I'm doing much better now.   Tue Feb 11, 2014 11:09 pm

hi everyone;
OK, I had a follow up LP today.
at diagnosis 2 years ago, my OP was 22 using a CPAP of 8 (which it turns out was not high enough and was probably too high for having IIH but no one had a clue, I had to figure this out myself) and then 23 with no CPAP. we showed on MRI that my CSF flow velocity doubled with no OSA treatment.

14 months ago I had jaw surgery: a maxillomandibular advancement, because I had determined that PAP was not going to work and I had to definitively treat my airway. I also suspected that mandibular advancement would help my jugular venous flow.

today my OP was 14!

conclusion 1: 23 was REALLY HIGH for me. what is the normal ICP range??? I don't think they know.

conclusion 2: jaw surgery cured my IIH.

THEN: I exposed myself to a chemical. I reacted (brain fog). it wasn't a massive reaction as I'd hoped, probably because I'm overall better. my OP 25 minutes after onset of exposure, went up to 15. so it wasn't as dramatic as I'd hoped and the ICP did not go into the abnormal range. well I think, since I don't really know if 14 might still be too high for me.

conclusion 3: chemical exposure increases ICP.

I think this must be brain edema because I suspected that it might take awhile for the edema to be transmuted into ICP, and my symptoms seemed greater than what I would expect for only a 1cm water rise. it was a 7% increase though. a greater percentage rise from chemicals than I had from no CPAP 2 years ago. and 2 years ago this correlated with a doubling of CSF flow velocity.

so there you have it.    
Deb
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PostSubject: Re: I'm doing much better now.   Tue Feb 11, 2014 11:49 pm

Deb, have you been on diuretics?  What meds have you been on that would cause your ICP to lower without using a shunt?
Glad to hear that you are still feeling better.  THAT is great news!
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PostSubject: Re: I'm doing much better now.   Wed Feb 12, 2014 1:11 am

NOTHING.
I use Lasix prn when I get brain fog which I believe is brain edema.  this can occur in response to odor or noise hypersensitivity, or sometimes I wake up like that if my sleep apnea was worse temporarily (forgot my Afrin, on my period, etc).  but I have not used Lasix in a week, in preparation for the tap.  I also had multiple chemical exposures over 2 hours before the tap, which probably raised my true baseline OP.

I believe, from my understanding of the physiology and applying that to my experience of this illness, that the mandibular advancement now allows the ICP to drain properly.  I still have the brain edema trigger that will give me milder increases from baseline; chemicals, noise, apnea, but these ICP spikes cannot be maintained because the jugular venous drainage problem was fixed by jaw surgery.  I still have sleep apnea, it is just milder.  it is still a trigger.  but my baseline is lower to begin with because of the change in neck anatomy.  the ICP still spikes but it doesn't spike as high and it doesn't plateau.

getting my face cut in half for the MMA was pretty freaky, but ultimately not as freaky to me as having a shunt in my brain.
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PostSubject: Re: I'm doing much better now.   Wed Feb 12, 2014 2:45 pm

Deb, I'm glad to hear you're feeling better and have finally found something that has given you some relief! Thanks for the update.
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PostSubject: Re: I'm doing much better now.   Fri Jun 17, 2016 12:41 am

Deb- I am very glad for you to be feeling so much better! It gives us all HOPE that one day we will hopefully be walking through a door of comfort and will see the light at the end of the tunnel. (no pun intended for the vision aspect there;)) 
I wish I had your investigative mind and abilities. I know that we can figure out a lot from our own bodies if we just listen, also being able to speak the same language as our bodies helps too, haha! 
I am so very happy for you! Feeling good is priceless and you have definitely paid the price (in time spent) I loved reading your story and loved loved loved the last few entries from you! I wish you the best in the weeks, months, and years to come! Hope you continue to get better and your triggers become milder as the time passes!


Measure your life by acts of goodness, not by years!
Take care y'all!
C
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PostSubject: Re: I'm doing much better now.   Fri Jun 17, 2016 3:01 am

thank you C.  it really is a miracle to me, and I don't forget it ever.

and you all may be interested to know, that my case report was just accepted by CRANIO journal.  the case report showing this effect from the jaw surgery on IIH.  I will post a link to the paper when it comes out.  if I can send the PDF for the files here, I will.
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PostSubject: Re: I'm doing much better now.   Mon Jun 20, 2016 5:31 pm

That's amazing, Deb! If you haven't already, you may also consider sharing it with IHRF.
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PostSubject: Re: I'm doing much better now.   Mon Jun 20, 2016 5:36 pm

That is awesome!! I look forward to reading it!!!


Measure your life by acts of goodness, not by years!
Take care y'all!
C
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PostSubject: Re: I'm doing much better now.   Sun Jun 26, 2016 6:22 am

I am definitely going to send it to IHRF, no worries!  and everyone else I can think of.  there is a companion report that I'm trying to get published in a different journal, detailing the fact that my ICP went up upon exposure to deodorizer chemicals, providing a link between MCS and IIH.  I think every doc who manages MCS patients needs to know this.  MCS is not a woo-woo diagnosis and deserves to be validated as something that can be objectively measured on an LP.  and the sensory symptoms of IIH need to be recognized as well, as there are many with sensory symptoms who may have IIH who are going undiagnosed.  notably autistic children.  those who end up diagnosed with IIH have this issue focused on by their doctors, and the sensory issues are ignored.  but every person I know with IIH who has taken the QEESI is positive for environmental intolerance.  they go hand in hand as far as I can tell.  doctors need to stop blowing off somatic symptoms.  I figure it's my responsibility to use my credibility to bring attention to these issues.
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PostSubject: Re: I'm doing much better now.   Mon Jun 27, 2016 3:38 pm

If we don't, no one will..that has become abundantly clear! Thank for being so diligent and sharing your findings with us.
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PostSubject: Re: I'm doing much better now.   Sat Jul 02, 2016 7:35 am

here is the link to my paper:
http://www.tandfonline.com/eprint/Ak8JHzE4irjQtezRtebe/full


Idiopathic intracranial hypertension eliminated by counterclockwise maxillomandibular advancement: a case report
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