Hello I'm new to this I've been told I may have iih yesterday I had a X-ray guided lo and had a exit pressure of 40.6 he lowered it to 11.6 I was suffering the most terrible headaches pressure in my ears the feeling on my head like I was wearing a hat today I've woken with the same but he told me 40 was not high but after reading on here people have been told who have had over 30was high I see my neuro doc next week week I had Mir they found white spots on my brain and I have had tingle in my feet hands and face I can't feel the tips of my finger tips they now taking of ms I've not long got over cancer would love some advice x
Are you on Facebook. I'm Lucinda VDubs Sara.
Iam Hun but I took my self off for a while so not on there at the moment x
I did put another comment but it's been deleted grrrrr
anything over 20 to 25 is high and over 30 need medication or surgery.
Sound like he dropped your pressure too fast so you have got a low pressure headach. To help try smoking. Laying flat. Caffeine. Codeine. If it don't go away or eases in a week then you might need a blood patch
Hi Hun my neuro put me on a tablet to drain the fluid I had lp Tuesday today the headache kicked in and the back spasam was so bad lol think I spelt that wrong day 3tomorrow is ment to be the worse someone said coffee I see the neuro doc on the 17th thank you for answering me I'm so confused in all this
Hi Wendy, my pressure was 38. you can get higher pressure 50s 60s etc but high 30s 40s is high enough. Mine was only dropped to 26 and i had 2 weeks of hell with a low pressure headache. you tell that its a low pressure headache because of the added back and neck pain, and the fact that when you lay flat for about 45 mins they get a little better - but as soon as you get up they roar back to full strenght. I had to stop taking the acetazolamide (diamox) that the neuro had given me (i rang up the neuro and got a phone consultation) because all this reaction is due to the loss of spinal fluid and the drug is keeping the spinal fluids production down. if you let the spinal fluid build back to normal - let the low pressure headaches stop. then you can start taking the drug again before your regualr high pressure headaches kick in after.
The tingle in your hands and feet (and face) is a perfectly normal side effect of both acetazolamide (diamox) and topirimate (topamax) these drugs have a whole hoast of strange side effects, that include weird tastes, mood swings, trouble thinking, loss of appitie, hair loss, so just make a note of these things but dont fret too much they tend to settle down after the first month of being on the drug. the drug takes out the potassium out of your body - it removes the salts and uses sort of revers osmosis to get the fluids out of the cerebral system. so that causes strange effects in the body - be sure to keep an eye on your kidneys and potassioum levels.
The whtie spots on you brain need more investigation - prehps you have secondary IH ot IIH? meaning there is a cuase of the high pressure?? be sure to ask the neuro on the 17th.
We have a good support group on another site if you want to chat more you are more then welcome to join there too and good luck on tuesday.
Keren
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Hello Karen
Thank you for your help yes I been on the
Tablets can't remember the name lol
Top something for couple of months now
The pins needles in hands hads has been
Some while now the other doc seems to
Think we leading down the ms route I have
Memory loss and My loss of balance I just
Want answers I let u know fingers crossed
Xx Wendy
Yep wendy - I was diagnosed 7 months ago - most of the side effects of the drugs get better after a few months but i still have the pins and needles!
And by all means be sure to get a full and thorough investigation to make sure you have looked into every possability, becuase you never know - but memory loss and loss of balance are also common IIH symptoms. When my pressure was high i suffered from both those things and they resolved when my pressure was brought down - others suffer with those symptoms as a chronic condition as part of their IIH. The pressure inside the head squeezes the inner ear and disrupts balance. It also effects blood flow ande oxygen levels within the brain. If your neuro told you 40 was not very high and is not aware that loss of balance and memory loss are IIH symptoms then i would consider getting a second opinion. That is not a rude thing to do - it is perfectly acceptable for rare conditions.
Through this all you havent mentioned your eyes - the pressure inside the head damages the optic nerve and untreated may cause blindness. 40 is a high reading. you need to have your eyes checked and keep haing them monitored. the condition you need to watch out for is papiledema - swelling of the optic disc. hopefully you are aware of this and just havent mentioned it. Anyway again good luck with your appointments - do get as many tests done as you can, because the more answers the better and hope yu start to feel better soon.
Hello kacey
I'm so sorry I called you Karen I think earlier
Lol it was early it was the man who done my lp
Who said he was going to rule out iih because
Of a opening pressure of 40 he said was not high
He closed it at 11.6 and said we can rule out
Iih I said the think it could be ms he said yes
We looking more along them lines but everyone
I spoke to Sid 40 is high but they only get closing
Pressure in the 20s I'm confused I see hi tomorrow
I'm not long over gallbladder cancer caught jus
In time I've been ent and cleared nothing wrong with
My inner ears I've had 4 Mir just had contrast
Lost of white spots been found and lessons on the
Brain
I am sorry to hear about your lesions, i hope they turn out to be fine!
and i hope your appointment went well and you get lots of test done!
Yep MS and IIH are very similar - Maybe you can keep a diary of all your symptoms then you can go through them with the doc and see that they think and when the tests come back you should know for definate - but i find diarys are good either way for tracking your progress no matter what condition you have.
Hope you week is going well.
Hello my friend
They have cleared me of iih they think I have
Mild symptoms of ms the lp did not show it up
But they are going to do more test
The only other thing they looking into is lack of
Oxygen to the brain as that can cause my symptoms
And explain my fatigue they taking me off the
The toppamite to see if the pins needles change
But I had it before taking the tablets the neuro
S just don't listen and I feel like he thought I
Was making it all up to b honest I been
Through so much I'm sick of hospitals why
Would I he said ms dosnt always show up
In lp unltill it's been a while ad would explain
The white spots and marks on Mir scan at least
No Tumor xxxx hope u ok