HomeRegisterLog inFollow us on facebookFollow us on twitterFollow us on youtubeFollow us on LinkedinFollow us on PintrestContact usFeedback


Share  | 
 

 Sarah - diagnosed 2010

View previous topic View next topic Go down 
Go to page : Previous  1, 2
AuthorMessage
Saz85
Member
Member
avatar


PostSubject: Sarah - diagnosed 2010   Sat May 21, 2011 3:25 pm

First topic message reminder :

Hi all.
I'm SO glad I came across this forum!
My name is Sarah, I'm 26 years old. I live in UK.

I thought I would hare my story (so far) about Idiopathic intracranial hypertension.

So it all began summer 2010 ( I was twenty five years old at the time) when I started getting headaches, to begin wit they the pain in my head was tolerable, I put it down to stress because there was a lot going on in my life at the time. After two weeks of a constant headache I finally went to the doctors, who also put it down to stress and anxiety, not getting enough sleep. He prescribed me something to help me relax, so that I would indeed get some sleep. The medication didn't do anything at all. No pain killers worked. The pain got worse, I had ringing and a "swooshing" sound in my ears. Especially my left ear. The left side of my body felt so much weaker than the right side of my body. It was around 8pm and I couldn't take the pain any longer, so I went to see the doctor on call who prescribed me pain killers and told me to go home and rest. Of course, the pain killers didn't work. Two days later the pain was unbearable so I went to A&E, told them that I had an unbearable headache (I'de never felt pain like it in all my life!) I was vomitting, I felt constantly dizzy, it hurt to move, I felt tired, lathagic and weak not to mention the annoying ringing and "swishing" sound in my ears. The nurse I saw was rather snotty with me and said "This is not a doctor surgery you can not come to A&E with a headache" she didn't look in my eyes or anything. She gave me two co-codamol and sent me home. By this point my vision was blurry, I was seeing double and my left eye was completely out of focus. The pain got worse! It was like no one took me seriously, no one would believe me. A couple of days later (the beginning of October) I went and had my eyes tested. I was in the little room with the optician looking behind my eyes with his machine thing (The light shinning into my eyes really was not helping, he had to stop so I could be sick) and he wrote out some paper work, explained I had pressure behind my eyes and I needed to go to my doctors ASAP (finally someone realised!), so off I went with the paper work had given me to give to my doctor. I was so so scared. I got into my doctors office and I cried, I was in so much pain, he gave me an injection of something (I don't remember much, it's all a bit of a blur. I remember being sick A LOT, I was crying - I just didn't care) and phoned the hospital. He insisted on calling and ambulance but I declined and told him my mum was on her way and would take me to hospital. I was sent into a little room while I waited for my mum, I was vomiting. My friend was with me where I didn't have to wait in A&E thank goodness and I think I was taken to EAU. I was sent right away for a CT scan, given some pain killers, they didn't work, just made me vomit even more. By this time it was around 4pm. I waiting to be seen by a doctor, the nurse was in and out taking my blood pressure (which was low - my blood pressure is always a bit on the low side btw) Also did blood tests. No idea what they were testing for, I can't remember. I was laying on a bed thing with a wet flannel on my head because it's the only thing that kind of helped. I couldn't open my eyes... it hurt SO much. The doctor eventually came and said I could have some morphine for the pain. And boy did that stuff help!!!! The CT results came back all clear. I was then admitted and was waiting for a bed to become available on a ward. About 9pm I was taken up to the ward. I was put on a the bowel ward, my consulatant was a bowel doctor - I know right... What the hell?! I have problems with my head, not my bowel. Anyhow.. I was given Oramorph every 4/5 hours for the pain. They didn't really know what was causing the pain just told me it was probably stress , after around 6 weeks of being told it's either stress, not enough sleep, the sun light, I'm imagining it, you need glasses blah blah blah I had enough of hearing the same thing over and over again!! I was not pleased, I saw a different doctor. They told me I needed to have an MRI scan because I had every symptom of having a brain tumor. So that leads to me panicking. I waited three days for the MRI scan. Anyhow finally get an MRI scan (not a plesant experience when you have the worst pain ever in your head and been vomiting) That went on for about an hour. I waited a day for the results to come back. That all came back fine. Thank goodness. So the next day, they finally diagnosed with Idiopathic intracranial hypertension. So I ask what that is exactly, they explain, tell me a lumber puncture will release the pressure which will stop the pain. So I have an LP. Worst experience of my life. I'm not even going to write about it. Just that it took double the amount of time, the doctor "couldn't find the fluid to drain" Eventually he did and it was over 100! OVER ONE HUNDRED! That is A LOT! He couldn't believe it. I thought finally, people will now know that I am not making this up, I have a diagnoses, something CAN be done. The next day I go home. They give me anti sickness sickness tablets and paracetamol. They said it was probably just a one off and shouldn't happen again. Still got a headache, eye sight is still not good, in fact, it's worse. A few days later.. I wake up and I can not even move! My head feels like it's about to explode, OMG! Can't open my eyes... nothing the pain is just unbearable. Back to hospital I go. I had to wait in A&E but I needed to lay down so they actually let me have a bed in the corridor, where I waited HOURS! It was SO noisey, I was eventually given morphine again to help with pain. I was in and out of sleep... really don't remember much, I think they did blood tests and the doctor noticed my left side was weaker than my right side. I was transferred to EAU again. I had the same nurse as the first time, lol. The doctor thought perhaps I'd had a stroke because of the one side being weaker than the other blah blah blah. It wasn't a stroke by the way, obviously. I was admitted to hospital. Back up to the bowel ward, same bay, same bed, same nurses... same consultant, same doctor. Great am thinking, we're going to get nowhere again. I was in hospital 10 days, they put me on Acetazolamide tablets to help reduce the pressure around my brain. I was back on morphine again. Slowly my eye sight started to come back to 'normal' The tablets were working, I was getting better and better each day, after 11 days I came home. I had a neurologist appt two weeks later where she told me to lose weight (I weighed about 130lbs.. I'm 5'4) because I was "fat" So I do that. Headaches go away, I keep taking the medication. Yes! I am getting better! I have eyes tests, everything looks wonderful! Yay! I was so so happy. Neurologist was pleased I'd lost 10lbs. I'd had no headahces for about 3 months. My eye sight was improving more and more. Neurologist told me she'd leave an open appt for 12 months, if i needed to see her again to contact her. Anyhow had a good xmas and new year.. great 26th birthday.. good Easter. One day two weeks ago (May 2011) almost 6 months after I was diagnosed, I wake up with that dreaded pain in my head. My vision goes a bit blurry sometimes, nothing like last time though. Oh.My.God. I think to myself "Not this not again no no no no no just NO!" So I go for an eye test (thursday) and guess what? There's pressure there behind my eyes. New pressure. More pressure than there should be. He looked in my eyes with that big machine thing that you rest your chin on, and the light shines into your eyes. God, I hate that SO very much. Especially when ya have a headache! And your eyes are sensitive to light. So now I wait 6 weeks for my next appt to see if it drains itself or if I have to have another lumbar puncture. Wonderful. Headaches are mild at the moment. My eyes are so sensitive to light (and apparently it's suppose to be sunny for the next 2 weeks, awesome - Hope you're noting the sarcasm here) ARGHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!! Thankfully this morning I did not wake up with the dreaded pain in my head. However, it doesn't feel 100% normal My vision is ok at the moment, I am SO grateful for that.

I'm still taking my tablets
(acetazolamide), and I've had to start anti sickness tablets again because I feel sick AGAIN. There's no point in taking pain killers, they do NOTHING. Not even Tramadol. So, Idk. I guess we'll see. I know this though, if the pain gets worse I will not be waiting six weeks, no way! I dread every day because I just do not know what is going to happen. Will I wake up with the headache from hell? Argh! So frustrating.
And there isn't even a cure....

I know one thing, I will not let it take over my life. And yes, I know things could be SO much worse!!!

Sorry this was so long, I C+P it from my blog. This isn't exact btw, I can't remember how long between A&E.. and going to the opticians. My memory is just so bad!

Maybe I've found somewhere that people understand what I am going thru.


Last edited by Saz85 on Sat May 21, 2011 3:32 pm; edited 1 time in total
Back to top Go down

AuthorMessage
Saz85
Member
Member



PostSubject: Re: Sarah - diagnosed 2010   Fri Aug 19, 2011 5:28 pm

Had a headache this morning but managed to sleep it off thank goodness. Not quite sure what that was about, as usual it was on my left side of my head, I feel great now though *touch wood* perhaps it's because I am more prone to headaches? I really do feel great right now though, first time in months!!!!!!!!!!!!!!!!!! :sunny:

Sarah xxx
Back to top Go down
Heidi
Admin1
Admin1



PostSubject: Re: Sarah - diagnosed 2010   Fri Aug 19, 2011 7:23 pm



FANTASTIC!!!
Back to top Go down
http://www.ihaveiih.com
Saz85
Member
Member



PostSubject: Re: Sarah - diagnosed 2010   Fri Aug 26, 2011 1:44 pm

I had the LP on 15th August. 11 days ago. I felt good for a few days but now my headache is back in full force. It's not been this bad for a longtime. :(:(
Back to top Go down
Heidi
Admin1
Admin1



PostSubject: Re: Sarah - diagnosed 2010   Fri Aug 26, 2011 2:27 pm

Have you got any of these symptoms intense headaches when you stand or sit up, neck pain and vomiting? If you have it could be a low pressure headache as a result from the LP, try to stay laid flat, have plenty of fluid and some painkillers. If the pain gets worse or continues after 24 hours, get in touch with your doctor so that he can arrange for something more effective. If you have a fever, any swelling or tenderness where you had the lumbar puncture, and any leakage of clear fluid or blood call your doctor out.

Keep us posted on how you get on, and I hope this helps. hug
Back to top Go down
http://www.ihaveiih.com
Saz85
Member
Member



PostSubject: Re: Sarah - diagnosed 2010   Fri Aug 26, 2011 9:23 pm

My symtoms are
very bad headache, epsecially the left side of my head.
my left arm and left leg are weaker than the right side.
the ringing in my ears (although its more like a "swooshing" noise at the rate of my pulse.
Pins and needles (which I have constantly, headache or no headache)
vomiting
feeling very fatigue/tired
sensitive to any noise and light.

Feels the same as it did when i was first diagnosed with IIH. I am really hoping it goes away soon.
No swelling or anything where I had the LP.
Can a low pressure headache occur 11 days later?
hug
Sarah xxx
Back to top Go down
medmisfit
Admin2
Admin2
avatar


PostSubject: Re: Sarah - diagnosed 2010   Mon Aug 29, 2011 4:53 pm

Hi Sarah, sorry to hear you're feeling so crummy again!

A low pressure headache can occur if your spinal fluid continues to leak, but it sounds like you might just be experiencing the IIH headaches again. Unfortunately, the LP isn't a cure and doesn't usually last for long periods of time. I would suggest you follow up w/ whatever doctor ordered LP and make sure they know about all the changes.

I know some people find some relief from hot pads or cold packs to your forehead/eyes, back of your neck, and/or spine. I personally got the most relief from laying between 45-60 degree angle..just support your side and neck w/ extra pillows and adjust until you find the best spot. It's really a system of trial and error because everyone is different, but hopefully you'll be able to find some relief.

Hang in there and keep us posted!!!
hug
Julie
Back to top Go down
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Thu Sep 22, 2011 4:51 pm

The headahces back. The last 8 days I've had it constantly, waking up in the night, being sick, end up going back to bed for the last 2 days, I don't know what to do, I just.... ARGH! The pressure wasn't even that high last time I had the LP (15th August) it's really, really getting me down.
Maybe stronger meds? Another LP?| I don't know :( I am so miserable. I'm not looking for sympathy, I just need a place to vent. I feel so alone :( Nobody understands. Have I got this for the rest of my life?
Back to top Go down
Heidi
Admin1
Admin1
avatar


PostSubject: Re: Sarah - diagnosed 2010   Thu Sep 22, 2011 6:17 pm

Sarah this sounds more like a high pressure headache rather than a low pressure headache. A low pressure headache usually starts the next day or a few days later and the symptoms are usually intense headaches when you stand or sit up, neck pain and vomiting.
The best way to cope with a low pressure headache, is to stay laid flat, plenty of fluid, caffeine and some painkillers. Coke is a good way of getting lots of caffeine too, or you can get some caffeine tablets from a herbalist for example.

If the pain gets worse or continues after 24 hours, get in touch with your doctor so that he can arrange for something more effective.

Heidi


Last edited by Heidi on Fri Sep 23, 2011 5:43 pm; edited 1 time in total
Back to top Go down
http://www.ihaveiih.com
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Fri Sep 23, 2011 5:42 pm

Thanks Heidi.

I've had the headache STILL today. 9 days now of constant headache....
I was told to avoid caffeine... I don't really drink or eat anything that contains caffeine, even chocolate - RARELY eat it! The only thing that sometimes help is sleep, even then I will still wake up with the headache, just not as bad as it was before I went to sleep but as the day/night goes on it gets worse.

Sarah xx
Back to top Go down
Heidi
Admin1
Admin1
avatar


PostSubject: Re: Sarah - diagnosed 2010   Fri Sep 23, 2011 5:57 pm

As this has been going on for nine days now, I think you should give your Neurologist a ring although you will probably end up speaking to his secretary. Tell her who you are, your hospital number if you know it, and that you have IIH and had a lumber puncture (with date if you remember), and that you need to see or speak to him about the headaches you are experiencing.

She may ask you to give her a description of what the headaches are like, but if she doesn't tell her anyway. Hopefully someone will get back to you and be able to advise you what to do.

You could also go and see your GP who may be able to help or he may contact the Neurologist or someone in that department on your behalf. If you dont get any joy on contacting the hospital and your Neurologist can't see you, contact your hospitals PALS and they will be able to mediate for you and help you to see him.

Keep us posted about how you get on.



Heidi
Back to top Go down
http://www.ihaveiih.com
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Sat Sep 24, 2011 12:06 pm

I'm going to call first thing monday morning because I can not go on like this. Headache is ok at the moment, it's not as bad as it was *touch wood*
Thanks for your help, I will let you know how it all goes hug xx
Back to top Go down
JoJo123
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Thu Dec 29, 2011 9:42 pm

Hi Sarah,

I am new to the forum and just read through your story. I hope you are feeling better? My story is quite similar to yours. I was diagnosed in 2009 and had an LP which followed by the same symptoms you describe. I have been taking the Acetazolamide for 2 and a half years. I thought it may bring you some comfort to know that although I initially had the terrible symptoms you suffer with too and particularly the pins and needles, I found that over time and maybe my body got used to the drug, but the side affects disappeared completely. Not only that But after some time, not only did I not get an IH headache, but I didn't get any headaches of any description at all. I think it just took time, as many things do, but I felt fantastic for almost 2 and a half years. I know each person is different and it did take some time for the side affects to go, but they did, so there is always hope.

Unfortunately a few weeks ago, the Symptoms have come back with a vengeance and I am due back in hospital tomorrow. I may also need another LP? I am still taking the Acetazolomide and the same dose as you, 2 in the morning and 2 at night. I woke up with that awful feeling, just knowing the pressure was back, eye pain, vision problems, headache and the whooshing in the ears.

I just hope that your side affects will gradually disappear as mine did and I hope you are doing much better?

Kind regards,
Jo xx
Back to top Go down
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Thu Feb 16, 2012 9:26 am

Hi Jo. I hope you are feeling better? It is nice to know I am not alone but I feel so sorry for you having to go thru this :( it isn't nice.

*hugs* xxx
Back to top Go down
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Thu Feb 16, 2012 9:27 am

Yesterday I had another LP.
I have such a bad headache now, i cant stand up, it hurts even more =[
How long does the headache after an LP last? I can't remember.. .

Sarah xxx
Back to top Go down
Heidi
Admin1
Admin1
avatar


PostSubject: Re: Sarah - diagnosed 2010   Thu Feb 16, 2012 1:49 pm

It's not unusual to suffer with a low pressure headache after a lumbar puncture. The symptoms are usually intense headaches when you stand or sit up, neck pain and vomiting. You may find them worrying and upsetting the first time you experience one, as the pain can seem intolerable. They can start a few hours after an LP or the next day. Be aware of fever, any swelling or tenderness where you had the lumbar puncture, and for any leakage of clear fluid or blood. If you have any of these call your doctor.

It varies from person to person Sarah. The best way to cope with a low pressure headache, is to stay laid flat, plenty of fluid, caffeine and some painkillers. Coke is a good way of getting lots of caffeine too, or you can get some caffeine tablets from a herbalist for example. If the pain gets worse or continues after 24 hours, get in touch with your doctor so that he can arrange for something more effective.

Back to top Go down
http://www.ihaveiih.com
Wylee
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Fri Feb 17, 2012 2:39 pm

Hey Sarah, I don't understand why you have not had shunt surgery to get rid of the constant high CSF pressure?? You have had such a horrible time for so long. and a shunt is the "next step" in dealing with IIH. I had a lp shunt installed Nov. 1st, and even though I have had some ups and down since, it is still better then before I had the surgery.
Back to top Go down
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Sat Feb 18, 2012 2:51 am

hi heidi, thanks you have explained all my symtoms, i will be drinking some coke and remain lying flat, thank you xx
Back to top Go down
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Sat Feb 18, 2012 6:43 pm

@Wylee wrote:
Hey Sarah, I don't understand why you have not had shunt surgery to get rid of the constant high CSF pressure?? You have had such a horrible time for so long. and a shunt is the "next step" in dealing with IIH. I had a lp shunt installed Nov. 1st, and even though I have had some ups and down since, it is still better then before I had the surgery.

I'm not sure why tbh. This might be something for me to look into though.
I hope you are well!

Sarah xx
Back to top Go down
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Sat Feb 18, 2012 6:50 pm

@Heidi wrote:
It's not unusual to suffer with a low pressure headache after a lumbar puncture. The symptoms are usually intense headaches when you stand or sit up, neck pain and vomiting. You may find them worrying and upsetting the first time you experience one, as the pain can seem intolerable. They can start a few hours after an LP or the next day. Be aware of fever, any swelling or tenderness where you had the lumbar puncture, and for any leakage of clear fluid or blood. If you have any of these call your doctor.

It varies from person to person Sarah. The best way to cope with a low pressure headache, is to stay laid flat, plenty of fluid, caffeine and some painkillers. Coke is a good way of getting lots of caffeine too, or you can get some caffeine tablets from a herbalist for example. If the pain gets worse or continues after 24 hours, get in touch with your doctor so that he can arrange for something more effective.


Hi again heidi, just wondering if you know how long low pressure headaches can last for?
Caffine and strong co co-codamol do help but the pain is still quite bad (not as bad as it was though *touch wood*) I can't stand up/walk because of the pain. Even sitting up hurts my head/neck/shoulders. It's a pain I can't really explain.
Thankyou so much for your help, I don't know what i'd do without this forum when I am having a hard time with IIH. It is nice to know I am not alone but at the same time I feel for everyone who also suffers with IIH, it's not nice. I wish so badly that there was a cure for us all.

hug

Sarah xxxx
Back to top Go down
Heidi
Admin1
Admin1
avatar


PostSubject: Re: Sarah - diagnosed 2010   Sat Feb 18, 2012 10:32 pm

Hey Sarah, hug usually it can last up to a week or so, sometimes it settles down on it's own. I would stay laying as flat as you can or try laying with one pillow. If it is no better by Monday get your GP out to see you or ring your Neurologist, personally I would start with your GP, because he may be able to do something or at least arrange for you to be seen by your Neurologist.

Heidi hug
Back to top Go down
http://www.ihaveiih.com
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Sat Feb 18, 2012 10:55 pm

Thanks heidi, headache has eased a bit, my balance isn't very good though and my hearing in my left ear is weird. I'll contact dr if it gets worse, hopefully it eases on it's own hug
thank you xxx
Back to top Go down
Wylee
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Sun Feb 19, 2012 12:42 pm

Sarah, what was your opening pressure when they did the lp? Did they tell you what the closing pressure was?
Hope you are feeling better. Those headaches are no fun.
Back to top Go down
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Sat Feb 25, 2012 6:03 pm

@Wylee wrote:
Sarah, what was your opening pressure when they did the lp? Did they tell you what the closing pressure was?
Hope you are feeling better. Those headaches are no fun.

Pressure when I went for LP was only 21/22 after the lp it was 11/12.

See, the pressure isn't even THAT high, I don't even experience headaches all the time when its that low. It makes somethin behind my swell though which the eye dr picks up on... that's why I had an LP. Even just a small amount affects my vision.
Back to top Go down
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Sat Feb 25, 2012 6:05 pm

I was hospitalised again for a day and a half. Ended up going into hospital via ambulance at 4am last monday morning as the pain was really bad. IT has NEVEr been that bad before. I didn't even know what to do with myself, it hurt to lay down, stand up, sit up, just... I can't even explain the pain. Anyhow, I was sent home with stronger pain killers. I saw a better neurologist, who explained things much more clearly and said to have IIH you don't even have to much of an increase of pressure.

I'm till not 100% now but am better than I was before! My head still feels a bit weird but am not in pain.

I think at my follow up appt we're going to discus a shunt perhaps, I'm not sure. All I know is I NEVER want to experience that pain again EVER! It was horrendous.

Thanks for all the help and advice guys hug

Sarah xxx

EDIT: I just wanted to say that I am still taking diamox 250mg x2 in the morning x2 in the evening. I have to take anti sickness tablets 3 times a day as I constantly feel sick since I have had the LP :-/ The LP seems to have done me more harm than good (I mean obviously it's helped the swelling behind my eyes) but now it's caused me other problems like headaches/hearing is all weird / co ordination is realllly bad (To do with the headache and hearing?) Not to mention the pins and needles/face goes numb (This is nothing new though!) and my head feels odd.. I cant really explain it, I'm hoping someone will be able to relate to what I mean.... I've had enough of feeling like this :(
Back to top Go down
Heidi
Admin1
Admin1
avatar


PostSubject: Re: Sarah - diagnosed 2010   Sat Feb 25, 2012 7:13 pm

Sarah what a horrible time you're having. hug I'm glad you're seeing a better Neurologist and that you are on more effective pain relief. The symptoms you describe with your left side being weaker and the pins and needles with your face going numb, I have myself and have done since having an LP shunt, because it damaged my sciatic nerve and other nerves in my back. Perhaps they caught a nerve when doing the LP, at the time of your LP.

Did you feel like you had an electric shock in that side when they did it? I know from my own experiences of LP's that, when that has happened I've been told it is because they caught a nerve. You could ask your Neurologist if that could be the cause of those symptoms.

As for the sickness, coordination and hearing has he checked for an infection? I would either visit your GP after the weekend or phone your Neurologist and explain you are still having these symptoms, and ask to see him to have yourself checked over. It is possible to pick up an infection after an LP so please insist on being seen. And please let us know how you get on.

Heidi
Back to top Go down
http://www.ihaveiih.com
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Sat Feb 25, 2012 7:27 pm

Hi Heidi.

The doctor I saw in A&E when I went in via ambulance did say that it sounds like the neurologist who did the LP had caught a nerve. I didn't feel anything that I hadn't felt before, although my leg twitched a bit afterwards.

I did see my GP after I came out of hospital and told him all of my symptoms, he said if in a few days I am not feeling better to make an appt and see him, so that's what I am going to do. I HATE this feeling sick feeling. The co-ordination problem is really nothing new, since I was diagnosed with IIH (or even the months before I was diagnosed) my co-ordination hasn't been great. I think perhaps my left ear is blocked which probably doesn't help but we'll see Monday.

hug

Sarah xxx
Back to top Go down
Wylee
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Mon Feb 27, 2012 1:41 am

Sarah, I found that after my procedures when they dropped the pressure too low I had similar symptoms. The way that I describe my hearing is that there is a tinny echo, like a radio that is slightly off frequency. As my pressure gradually crept up that went away. The cognitive issues and balance/equilibrium is possible with abnormal pressure, be it too low or too high.
My opening pressures have been between 21 and 24, my ns said that he thinks my sweet spot is at 9. I think that is too low............headaches, hearing and balance issues, and all the rest. I will be having another lp done in a couple of weeks to see what might be going on. It may be that we are so sensitive to the changes in our pressure that when it varies so greatly between being too low and too high, for us, that it makes us feel miserable. Keep in mind, the "normal" pressures are only an average, not a set in stone rule.
If you need any help in talking to your neurologist about pressures, my neuroradiologist is fantastic about sharing here test results with other docs. Let me know if you would like her assistance.
Back to top Go down
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Mon Feb 27, 2012 9:20 am

I agree wylee, another dr has said the same thing to me before but not my neurologist. I think because you're in the states and I'm in UK things vary although what you say makes perfect sense to me! 9 does seems really low to me too. Thanks for this info, it has really helped!!
Let us know how you get on with the next lp and gooduck. hug
Sarah xxxx
Back to top Go down
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Mon Feb 27, 2012 9:48 pm

Hi all, I thought I'd just pop on quick. I am feeling A LOT better this evening. My head isn't 100% (but it never is), the ringing in my ears isn't as bad =)
I'll let you know how my follow up appt with the neurologist goes (I'm waiting to hear when the appt will be.)

Thank you SO much for all your help and advice, seriously I don't know where I would be without you guys
hug

xxxx
Back to top Go down
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Tue Nov 27, 2012 7:27 pm

Hi all, just thought I would update you all quick.
I haven't had another LP since FEB 2012, (touch wood) Thank goodness! However, my headaches can still be quite bad yet another day the pain is tolerable. I am still taking 1000mg diamox a day. (2 in the morning, 2 at night), 3 nortiptalyn (sp) at night and have just started a new tablet called 'Neurontin' 100mg at night, so far the new tablet doesn't really do much but I have only been taking it for a week. It makes me drowsy all the next day though =/ Has anyone else tried this tablet? (Before this is was taking topamax but that made me feel really sick.
I still have tingling in my feet, arms and legs, hands is the worst! And the left side of my body often feels weaker than the right side of my body but that's when the IIH is at it's very worst. Sometimes I am fine, just have a dullache behind my eyes.

I had all my eyes tests last month and everything looked the same as it always does - not sure if iit'sswelled or not... I'm not really sure because they really don't tell me much and even when I do ask I still don't fully understand. I think he was saying my optic nerves are swelled. I had photographs of the back of my eyes taken again and go back in 6 months for more photos & to see if there's any change to my optic nerves or not. My vision is ok but I still miss judge the distance between two objects or totally miss the curb for instance.

Anyway, I just wanted to say a huge thank you for all the support and everything.
Lots of love to you all xxxx
Back to top Go down
Heidi
Admin1
Admin1
avatar


PostSubject: Re: Sarah - diagnosed 2010   Tue Nov 27, 2012 7:44 pm

Sarah thank you so much for updating us. I take Gabapentin which is another name for Neurontin. I take 300mg 3 times a day, not for the IIH but for damage to my sciatic nerve and surrounding nerves in my back. IT has helped tremendously with that, and I suppose with the IIH too. I've been taking it for 7 years now. I know what you mean about feeling drousy, because added to having to take Amitriptyline at night, it does take me a while to get going in the morning.

It sounds like for now your optic nerves are stable, and that there is some swelling but they don't seem over concerned about it for now. It also sounds like you've lost your depth perception. I lost my depth perception 11 years ago so I know what you mean about misjudging the distance and kerbs. I found that when getting to the kerb to slide my heel down against it made it a lot easier, and the same when going down stairs and steps.

We work with the RNIB and it might be a good idea to contact them and have a chat about your problems with vision, because they will be able to help you adapt and advise you.

Let us know how you get on and we'll all have our fingers crossed for you. hug
Back to top Go down
http://www.ihaveiih.com
Saz85
Member
Member
avatar


PostSubject: Re: Sarah - diagnosed 2010   Mon Dec 03, 2012 7:03 pm

Hi Heidi. thanks for the reply and info. My Dr said about increasing the Neurontin if needs be, it's just the drowsiness and tiredness that comes with taking those and the nortiptlyne takes some getting use to I think! I'd rather be drowsy/tired than have brain pain though.

I'm going to look into RNIB. My eyes aren't always really bad, but most days I do miss judge my step/the distance between two object.. the curb and stairs are a pain. I am slowly learning though, I slide my heel down the curb/stairs, too either that or I take a larger step than I need to so I know I won't miss.. other people must think I'm nuts.

Thank you so much for your advice. I am so grateful.. I don't know where I'd be without this site and all of your support/help and advice. hug xx
Back to top Go down
Sponsored content




PostSubject: Re: Sarah - diagnosed 2010   

Back to top Go down
 

Sarah - diagnosed 2010

View previous topic View next topic Back to top 

 Similar topics

+
Page 2 of 2Go to page : Previous  1, 2

Permissions in this forum:You cannot reply to topics in this forum
www.ihaveiih.com :: Living with IIH ::   :: Women and IIH-
Jump to:  
DISCLAIMER This group is not managed by anyone in the medical profession, but by people who are either affected by, or are closely connected to IIH. Information provided on this site is meant to complement & not replace any advice or information from a health professional, users and members are reminded that medical professionals should always be consulted in all aspects of health needs.
Protected by Copyscape Web Copyright Protection Software
Top Disability Websites
Make a forum | © phpBB | Free forum support | Contact | Report an abuse | Free forum