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 New to IHH and Headache during a spinal tap.

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Thequeenofinfirmum

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PostSubject: New to IHH and Headache during a spinal tap.    Mon May 22, 2017 11:07 pm

Hello everyone! I am so happy that I found this community! I was just diagnosed with IIH last Thursday (the day after my birthday, so that was a fun bday present!!) but I think I've had this for around seven years. (Since I was around 12)

Has anyone had a really bad reaction to their lumbar puncture? I knew about the post spinal tap headache, but right before the needle was pulled out I was in excruciating pain--the pressure in my head was so bad. I told the doctor doing the LP and he just said: "that's weird, it should have felt better since the pressure was high" I stayed at the hospital and they gave me fluids, it helped a bit, but the pain was still some of the worst of my entire life. Has anyone else had horrific pain at the last half of their LP? Everything I've read has told me that when you have iih you feel so much better without the fluid and I'm just really disheartened that I felt so much worse. 

Ive asked a couple of doctors but they just look at me like I am crazy. When I went in to do the bloodpatch since the pain was becoming unbearable, the doctor who did that said that doesn't sound "right".

When I asked my Neurologist, she just said that's weird, but didn't offer any insights.  I'm feeling really blue about it all. My doctor spent five minutes talking to me. She said you have iih. I think it's primary. And that was it. She didn't tell me what that meant or what it would mean for my life, or what the next steps are. I have chronic migraines, but I also have extreme exhaustion. I asked her if this could be caused by the iih and she just shrugged it off. I'm feeling really sad at the lack of communication. What have your doctor said about it? She did put me on Diamox, 250, and so far that has been miserable. I've taken it three times now and am already feeling much worse. (I really really don't want to knock it yet, since it is such a helpful drug)

 I'm just really discouraged, because it seeens like all the things that normally help people with IIH, have been miserable for me. Can anyone else relate?

(If you made it this far, you deserve a Unicorn!!!)
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medmisfit
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PostSubject: Re: New to IHH and Headache during a spinal tap.    Tue May 23, 2017 9:14 pm

Welcome to the forum!!!

I'm wondering if they drained too much fluid and your pressure was too low..did they have you lay flat after the LP or did you notice symptoms getting worse when you sat or stood up after you got home?

I don't know that I have felt worse during the LP, but I have felt worse following a LP when I've had low pressure. That is a little deflating because you look forward to being symptom free for a day or two, but you don't notice any improvement because of the low pressure symptoms.

Diamox can also have horrible side effects that some members aren't able to tolerate. The side effects have gotten better over time with some members, but they can be debilitating if you can't tolerate the med. There are other options available to treat IIH, so just keep an eye on it and see if you notice any changes. Then talk to the prescribing physician, if it gets worse or too intrusive.

Check out the site and let us know if you have any further questions or concerns. We'll do our best to help you through it.

Take care,
Julie
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Sophiasmom
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PostSubject: Re: New to IHH and Headache during a spinal tap.    Thu May 25, 2017 6:03 pm

hi;
what was your opening pressure and your closing pressure?  I wonder if it was a big change that your brain was having trouble adjusting to.  it sounds like you had a leak since they did a blood patch.  are you feeling better now in terms of that headache?

I suspect that your "chronic migraines" and the fatigue have all been from the IIH.  I always try to find the simplest explanation for things.  I had all that and it went away after I went into remission.  I got better after jaw surgery for my sleep apnea.  I am interested in what else was going on in your life at age 12 when this started for you.  did you have orthodontia?  if so, did they extract any teeth?

Deb
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Thequeenofinfirmum

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PostSubject: Re: New to IHH and Headache during a spinal tap.    Tue May 30, 2017 9:08 pm

Sorry it took me so long to respond! I have not been feeling very well, but I immensely appreciate your responses!

Julie, thank you for responding so quickly!
I was lying down when the pain started, and they had me lie down for an hour while they gave me fluids. My pain was at around a 6 when lying down, but when I sat up, even after the hour and the fluids, it went up to around an 8. The third day was when it got unbearable and I had to go get the bloodpatch. 

I was wondering which doctors you have found to be the best for treating the IIH? I am currently seeing a neurologist, but I don't think she's very educated on iih. Are neuropathologist better for treating it or at neurologists the best? 

Thank you so much!

Sara



Hello, Deb!
My opening pressure was 27 and the closing was 10. 
Up until the blood patch the pain was the worst of my entire life (and the pressure actually felt a lot higher) but after the bp it lessened the extreme pain to a much more manageable pain.  I feel much better now (thank goodness!!!!) I'm back to my "average" pain, but my baseline symptoms are continuing to get worse. :(

I'm really glad to hear that you are in remission! That really gives me hope! 

I did have orthodontia around 12 and they had to extract my wisdom teeth. After the surgery I had 6 infections, which ended with them having to redo surgery to clear it out. 
Around that time I was getting monthly ent/sinus infections. I was on antibiotics every month for about 2 years. Even though I was still getting infections, I finally stopped taking the antibiotics because they weren't helping any more.( they never found out why I was having infections to begin with.)

Sorry that was so long! There were other things going on but I feel like I've totally spammed you with my history! But I really appreciate your input! I feel very lost and any bit really helps! 

Sara
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Sophiasmom
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PostSubject: Re: New to IHH and Headache during a spinal tap.    Wed May 31, 2017 9:11 pm

modern orthodontia moves the teeth back which moves the lower jaw back and pushes the tongue into the airway.  upper respiratory infections cause swelling of tissues in the nose and throat, most notably tonsils and adenoids, which obstruct the airway.  you may have been precipitated into obstructive sleep apnea at that time which may have caused your early symptoms.  apnea is known to increase intracranial pressure.  with this history I would recommend having your sleep breathing fully evaluated.  I"m glad they did not extract any other teeth besides the wisdom teeth.

if antibiotics didn't help and you were tested for allergies and that was negative, it is more suspicious that laryngopharyngeal reflux as a consequence of sleep apnea could have been the cause of your nasal and throat symptoms.  stomach contents getting suctioned into your throat can be very irritating.

no worries on the details or length of your post, it's absolutely fine!

some people have been reported to go into remission after having that low pressure headache from a leak, but it sounds like it didn't work for you.  a neuropathologist would not see patients, they just look at slides in the lab.  a neurologist and/or neuro-ophthalmologist would be the docs for you.

Deb
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medmisfit
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PostSubject: Re: New to IHH and Headache during a spinal tap.    Fri Jun 09, 2017 2:26 pm

I'm glad you're feeling better! I recommend members see a neurologist and neuro-ophthalmologist. Unfortunately, not all specialists know much about IIH and you'll end up educating them most of the time. If you don't feel like you're making progress or being heard, I would try a different one.
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Thequeenofinfirmum

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PostSubject: Re: New to IHH and Headache during a spinal tap.    Mon Jun 12, 2017 10:19 pm

Deb--
Thank you for responding in so much detail!
I had no idea that sleep apnea could cause the IIH! I had a sleep study and didn't have either obstructive or central sleep apnea, but that is very interesting! I was tested for allergies and Mast Cell involvement is suspected. 
And I totally meant Neuro ophthalmologist, not a neuropathologist! (That was just a silly mistake!)
Thank you so much for responding again! I really appreciate it!
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Thequeenofinfirmum

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PostSubject: Re: New to IHH and Headache during a spinal tap.    Mon Jun 12, 2017 10:20 pm

Julie--
Thank you! I am going to neuro ophthalmologist in August. They say that they are a specialists so I am hoping they will be well informed!
Thank you so much for responding!
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