Hi Everyone! Glad I finally figured out someone made a new site for us!!

I've been having a horrible struggle lately with feeling a lot of pressure in my head off and on through out the day. It's been going on for like a week. Sometimes I also feel very dizzy, sometimes woozy.

I went in for a CT Scan last friday and my neurologist said everything looks normal. He wants me to increase my migraine meds, but I can't believe that this is a migraine thing, and I have trouble at that level of medication that's why I decreased before. I'm going to see my regular doc on Tuesday to see what he says.

What kind of experience have all of you had with this? Any ideas? Does it sound like a hydro issue to you or do you think it really could be just a migraine thing? I'd love any info you have to offer I'm getting pretty desperate.

Thanks everyone. Good to finally "see" everyone again.

Heather

Heather -

You sound like me for the past 7-8 months or so. I just had a programmable shunt put in because I was having pressure problems. This was my 2nd revison - EVER. My last shunt was a medium-low pressure valve and I had that since I was at least 4 or 5 yrs old. I'm 29 now. My neurosurgeon first sent me to a neurologist when I came to him with the headache problem because none of the usual over the counter stuff was working for me. The neurologist put me on Imitrex and Topamax, and neither of them really gave me any relief. The Topamax was supposed to stop the headaches from coming on, but it didn't. Imitrex I took like candy and STILL didn't work.

My neurosurgeon finally put the new shunt in on August 18th and I've had NO headaches since. We came to the conclusion that the old shunt was not working to its potential. So now, I have 2 shunts because the old one had A LOT of scar tissue around it from being there so long and never worked on, so my neurosurgeon was worried I'd have a brain hemmorhage if he tried to pull it out, as he originally planned. So, both of the shunts I believe are working together...we still have to tweak the settings on my programmable a little, but so far so good. My hope is to be able to turn off the old shunt completely and just let the new one carry the full load someday...

I feel really good now! I would try the neurologist meds increase just to see if that helps at all, maybe try different meds, but if after a few months, it's not working, I'd get on the neurosurgeon's case because your shunt may not be working properly.

Kathi

Heather

Have you been taking a lot of pain killers to combat the headaches/increased pressure? I am sure you know about rebound headaches. I ended needing to take steroids to get my rebound headaches to go away.

Suzie

.... I also don't remember where I heard it, but caffine is supposed to help. I Think it expands the blood vessils in the brain(?) Anyone ever hear this too?

Hey, that sounds exactly like what I have been dealing with. I went this week, for the second time in the past two months, to the ER. They did a full xray and ct but came out and said it all looks great. I dont understand how I feel the way I do if thats true. If you find anything out please let me know! lol, maybe I can pass the info onto the dr at my next ER visit! I was thinking it may be an infection but the nusrse took my blood so they could do tests. SO I would assume they would have found that if it was there. (Sierra pulled out my iv the first time and they had to redo it, then the nurse missed! OWW thought it was funny, lol. maybe not at the time though hehe) Ok, so enough rambling, Im tired and the meds have kicked in. (Dr gave me Xanax but thats another story) HAve a good night all!

Hi Heather!
Sorry to hear you've been struggling. Is your pressure worse as the day goes on or better? The dizzyness and feeling whoozy you mentioned is what I feel when I'm overdraining. Overdraining can cause huge pressure feelings, just like underdraining, if it's bad. My old shunt overdrained me to the point where my ventricles eventually collapsed, but the CT scans I had prior to that happening looked fine. CT's don't always reflect the true picture of what's going on in your head. If the pressure is coming on during the day as you move about and do your daily routine, I'd guess it may be low pressure that you have. You can try lying flat for 1-2 hours and drinking loads of water and lots of caffeine....if you feel better after doing this, it could be low pressure that you have as all of the above make low pressure headaches better. I think I'm still a bit too low at the moment although sometimes the pressure feels too high...the feelings are so similar and it's SOOOO confusing!! If it's really causing you distress, push to get it checked. Hope you start to feel better really soon!

Hi Kathi,

It's been a while since you posted this comment, so I hope you are still around. Would you be kind enough to share with me the reasons for the shunt; who the neurologist was (or the clinic) who inserted the shunt; and, if it is still working? My daughter has suffered from debilitating migraines for years and has tried almost every medicine, those approved for migraine and some not, as well as almost every alternative treatment available. She definitely suffers from change in pressure, low pressure is worse than high pressure. Any information you are able to give us would be helpful.
Thanks, Joannakk

Hi there Joannakk. I just saw your post here in the Hydrocephalic Forum and wanted to welcome you to NeuroTalk. This thread tends to slow down at times and others may not see your post straight away, but please don't give up. Have a look around the site, and join in anywhere that you feel comfortable.

Hey
im 16 almost 17 and ive had a vp shunt fitted to drain my arachnoid cyst since 14 months old, I had this revised at 4 years old... This was brilliant and had no problems until 2 weeks ago, where my opthalmologist diagnosed me with papiladema behind my eye (on a routine check up at great ormond street hospital) I had no idea I had anything wrong with me I felt perfectly fine... Hadn't had a headache for weeks infact, I usually have headaches every other day so this caught me by surprise as this indicated pressure in my head damaging my optical nerves.

They had to try and measure this pressure in my head by inserting an intercranial pressure monitor for 48 hours... As CT scans did not show any evidence as such of any pressure.
i had this done, came round from the op fine, until hours after where it was hard to open my eyes, an exploding headache and constant vomiting... I then went into a coma state.
my pressure in my head measured 95 (typically 5-10 for a normal patient) and my bpm went to 35 (typically 100+)

I had an emergency shunt revision there and then, I woke up sore but no evidence of headache nausea blurred vision or anything. Perfect.

The next day I woke with a very noticable red track down my neck where my tube was... They said not to worry, I went home that day.

Came bk 5 days later for a check up, I explained I had an ongoing mild drowsy headache, I had Ct scan done (fine) && a shunt series xray. This showed up that my tubing in my stomach had uncoiled itself from my abdominal cavity, therefore I had my stomach reopened and the tubing was reimplanted into my abdominal cavity. Immediately after the op I had this checked but once again it done the same thing due to scar tissue damage from the operations done in the same place. I had this redone in a new incision and it worked. Now I'm fine && due to go on holiday in. 4hours!

I suggest you get checked for intercranial pressure no matter how well you may seem as the tube may of dislodged or coiled, my doctors all said the headache sound like migraine, until they inserted the ICP monitor, when i had the shunt revised, they drilled into my head and the fluid was at such high pressure it flew across the theatre!!
this werent the only time, the exact same thing happened when i was 4...no tests showed any evidence and everything was normal until they drilled into my head! lol
Good luck =D xx

Have you considered the effects of low barometric pressure/low oxygen levels. You can measure this with a barometer and oximeter. If the pressure drops on the barometer, oxygen levels in the air should diminish slightly. You may be sensitive to this adjustment. Check your sensitivity by comparing a normal reading on an oximeter to the current reading when the barometer falls. If your oxygen levels in your blood drop, you may need to supplement your oxygen levels with an oxygen concentrator.