LP scheduled, unsure, scared of procedure

Brain and nerves
1

Hi,

I need some help please? I have been scheduled for a LP at the Mayo Clinic due to the weird headaches I have been having, amongst other things, I have read about LP's and am terrified of having one! I wonder do I really need one?

I am 36 and female and yes overweight. For the last year I have had pressure in my head. I have seen every doctor known to man and everyone tells me I have anxiety. Well of course I do! My body is going crazy. I was referred to a neuro and he wants to check for IIH.

My symptoms are this:

Weird head pressure, not headaches, PRESSURE, Like someone has one hand on the base of my skull by my neck pushing and the other on my forehead. But the only pain I experience is a mild throbbing that comes on as the day progresses. I have had weird vision problems but been cleared by an eye doctor. Vision problems like mild light sensitivity and double vision. Eye floaters. But I blink and they are gone, Worse when I get tired. I have had an MRI of my head and neck, all clear. Pains like sharp stabbing pains random all over my head that throb and go away. Tenderness along my eyes and temples and sometimes what feels like soreness all over my head but nothing there. I also get ringing in my ears, tingling in my hands and one foot and an achy stiffness in my chest, back, and left shoulder. Full Cardio work up, also clear. I wake up with my hands asleep and when I first stand up in the morning the bottom of my feet hurt and I feel this horrible inner shake. I am extremely sensitive to cold. even when it is NOT cold. I get this mild throbbing, whooshing in my head if I stand up after sitting awhile and the only thing that helps the pressure in my head is to finally go to sleep. I do not sleep well. I randomly drop things and also forget dumb things, like what was for lunch. Probably because well I do not wake up rested.

I was prescibed xanax for the "anxiety" but all it does is dumb me down, nothing for the symptoms. After a year I have figured out I am not going to die but my quality of life with my family has gone down and no one understands why at 7 pm all i want to do is lie down.

To any one who has this condition, does any of this sound familiar? All other tests clean, MRI, CT, Blood work, ect. No autoimmune, heart troubles, blood pressure issues, MS, nothing. I just do not want to have one more procedure, a scary one at that, done if it is not needed. At this point I would be happy to be as anxIous as they all seem to think I am if it would mean a diagnoses!

Can anyone relate?

2

Hi, I am sorry to hear you are potentially facing IIH, From your symptoms you sound just like me... I had more severe headaches, still throbbing, tight and they too got worse as the day went on, would tend to be reasonable in the morning then just get worse and worse. I had this for as long as i can remember though from about age 6 which is unusual in IIH.

I have had many LPs something like 24 in the end i think, over 16 years post diagnosis, but my expierience of being unable to get taken seriously for so long thankfully seems to be unusual.

An LP is honestly not that bad, the more you get worked up, the wose it seems to be, i find the worst part is the anesthetic going in, i tend to say "i dont want to hear anything about a sharp scratch" but i do request that they tell me what is going on, i want to know if the needle is in or out.

Once the needle is in its more of a pressure than a pain though there can be pain and shooting shocks down the legs, it is totally normal and nothing to worry about, the socks are usually brief. Breath deeply if it is hurting, ask a nurse to be there and talk with you, the more your mind is occupied the better it can be.

I find it best to get the rails up on one side of the bed and get my feet up on the bars bringing my self into a tight fetal position holding on with my hands too, this helps to get me tight as possible though some doctors refused to let me do that and so they tended to struggle with the LP!! (some day they will listen to me)

Drink plenty of water before and especially after and remain laying down for a minimum of an hour, you can try bringing the bed head up if you are feeling ok and slowly see how you feel. It can help to have the sports type water bottles as it is easier to drink from them when on your back.

I ask for some of my CSF (the brain fluid) in a vial when they are done! Maybe im strange to want to keep some of it, but i figue that stuff caused so much pain i wanted to keep some. Better out than in!

As for your symptoms and diagnosis, it does sound to me like IIH, they will try to blame you and your weight, but it is NOT your fault!! If weight was the cause all big people would have IIH.

There are many cases where loosing weight resolves IIH but i know enough people where it had no effect or even made things worse to know that it is not our fault.

Yes loosing weight is always helpful and if it resolves the condition... great!!

What they fail to grasp is we are in pain, how are we to exercise when any activity makes things worse, unfortunately it requres a lot of management of what and how much we are eating but it is worth it either way.

There can be "low pressure" after an LP which is pretty distinct, a sharp pain over the top of the brain as soon as you stand, if this happens keep resting totally flat on your back (no pillow), drinking water and caffeeine (coffee, redbull, cola) as this helps to up the pressure and resolve the low pressure.

If you feel that you are not getting the help you need you are entitled to try other hospital's and doctors, you can also request referal's to where ever and who ever you want to see, the GP cannot refuse.

I took control of my situation about two years ago and started seeing different Neurologists, then i had chance to see a private Neurologist and he agreed i have a pressure issue and agreed that surgery was recommended.

I then took his report back to the nhs and tried two surgeons, first said "your not blind yet" the second wanted me to loose 6 stone... 4 of which had piled on since diagnosis, I walked away from him.

I then asked on a Facebook group if anyone had surgery where they did not have eye problems and got the name of a surgeon at the National hospital in London, i went up there and he said yes immidiately.

I am now 7-8 months post LP shunt surgery and my high pressure is cured, there are still issues such as slight low pressure, neck pain at times and existing migraines (now getting those sorted at last) and my tummy muscles are still a bit delicate, but generally i would say something like 90% better whcih is about as good as it can be.

My mind is changing constantly, i am a different person, people keep saying how bright my eyes are now.

Now,,, i can focus on getting the weight off as i am now awake 16-18 hours a day most days (as opposed to 12 or less before) working full time and writing a book on IIH support... I am slowly getting used to existing more like normal people do and getting closer to being more active than ever before.

Surgery is a huge step and not to be taken lightly, but try to concentrate on fact, percentages given by your surgeon specifically, each surgeon has a different success rate, one that i saw had quite a low success rate yet the surgeon that did my LP shunt had a very high success rate.

There are plenty of horror stories online and people ready to tell them, that is because most who had a good outcome are out there living their lives.

If you would like any more help do please ask, good luck xxx

3

I should add, having the LP is worth it if it can rule out IIH, if it finds you do have it, you have a chance to get your life back, there are medications to be tried as well as trying to loose weight. Do you know about IIHUK and IHRF? these are the two main IIH research organisations in the UK and USA both doing good work.

 

4

Hi. I'm 18 and got diagnosed with IIH 2 days after my 18 birthday.

Yes I had a lumbar puncture and I can reassure you do not be scared during the procedure you only feel the local anaesthetic go in it burns a little and then fine I was eating 10minutes after the lumbar puncture but the most important thing is to stay still think about something nice that's how I got through it they will get you to lie flat after the procedure for 4hrs this is the hard part forgetting to lie flat anyway you will feel pain and stiff once it wears off showering was impossible but the best part of the day I have been home for a month but was in hospital for a week and a half I struggled when I got home getting up was awful had to lie back down was throwing up everything I ate so went back into hospital on a drip they then put me on medications which made me even more sick the professor the. Decided to stop everything and let my body recover hence I had 7 exams coming up in a few weeks so yes a big shock to my life they did MRI of blood vessels in head and that's what made them do lumbar puncture anyway just stay calm I experience blurred vision black dots which go when I blink and white lines I did not enjoy the after effects of the procedure and am currently on no medications till after exams Good luck

5

Hi Kristy.

My daughter's only symptom, other than shoulder and neck aches, is worsening horizontal diploma, or double vision.

So there isn't much I can say about your symptoms but I'm sure anyone who answers you on here will be quite knowledgeable.

But...do not afraid of the LP!. My daughter was so stressed out about her upcoming LP. She was quiet and getting quieter the dayoff.

Seconds after it is done, ( narcotic injection of some sort so goofy) she says "Is that it? That's all?!Wow! Laughing and giggling.

"no way!" I totally want to get on the internet and tell anyone out there: "don't be scared, it was no biggie"

I know everyone's experience is different as our bodies are so unique, but I hope yours goes as my daughters did and that they get to the bottom of your health issues now!

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Thank you all for responding. I appreciate any information as this has been a frusttrating year not knowing what is wrong. My LP is scheduled for the 8th of July at Mayo Clinic and my neuro tells me his head nurse has done thousands. Should i still insist on xray?? Just worried. I have had an epidural before but years ago. Today is ok. The pressure on the sides of my head and weird head zaps juat started. It seems if i get a ton of rest it lessens but who can live like that?? Also my left ear feels stopped up and then clears and then stopped up again. No hearing loss just feels weird...ugh so many weird symptoms..I will send prayers that everyone has a good day..lol having a good day nowadays is a big deal to me!

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Hopefully X-ray guidance won't be needed, I never had that, although they got as far as the X-ray room once but another doctor came in and just stuck it strait in with no assistance lol. if the lady has done loads she should be fine.

I eventually had to ask that they go "one space up" with me as it worked better latterly but probably because I had so many in the normal space in the past it was getting harder there.

Bunged up ears and poppy ears seemed to be IIH symptoms for me too, poppy sore joints too, just about every joint used to pop but much less now.

Having an expierienced doc doing your LP is great, they used to set trainees on me because I had so many I suppose they thought that was ok to use me as guineapig but it didn't take long for me to stop agreeing to it!

I don't mind them watching tho. But my local really should not have a neurology department they have no idea about IIH and were frankly dangerous, I'm about to finally put my complaint in over the 16 years they did nothing to help me, my only demand is that they send their IIH patients to the National and stop trying to mess with people down here. If my bad expierience can help get others the right care it was worth it.

Try not to worry, your LP should be over in a few minutes and if you ask for a bit of your brain juice in a vial you have a little keepsake of the expierience

Best of luck... Stay calm breathe deeply and think of happy things xxx

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I am surprised you haven't had the LP done earlier my daughter started with bad headaches I kept dismissing it saying it is because you aren't getting enough sleep, then she started getting blurred vision so took herself to the docs again and was referred straight to the opticians so that next morning got in and the optician sent her straight to the hospital as she had this pressure build up behind her eye called Idiopathic Intracranial Hypertension . was at the hospital a while had scan and lots of docs look at her then eventually did the LP she had a build up of fluid on her spine, if it isn't caught in time it can go to your brain and cause a hemorrage and I have heard of people losing thier sight. My daughter is over weight but wouldn't say she is obese also suffers bad with anxiety although kind of gets by at college and sees a counciller. She was petrefied of the LP but was so brave it hurt when he had nearly done as the numbness was starting to wear off think the doc doing it was fully skilled at it though as I saw another doc do one on an elderly lady and she was fine, but once its done its done. Just remember to lay still for a few hours though or you can get a very bad back from it. Hope you get sorted soon keep pushing to get results you shouldn't be like this all this time x

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meant to put the doc doing it wasn't fully skilled

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Thank you. I hve had weird symptoms for over a year. It started with a really bad head cold. Then i noticed i couldn't go up the stairs at my job without my head spinning amd whooshing throbbing in my head. My chest and left arm hurt. So doctors went immediately to heart or blood pressure. 4 months later and a week in the hospital with a cardio catheter test i was fully cleared. I was told i had bad anxiety and told to see a therapist. 2 months later i got another head cold. This one gave me a blinding headache at the base of my skull for 5 days. Off to the ER only to have a clean CT of my head and told i had minor sinus infection. Since them i have had a mild pressure headache every day about 4pm that gets worse until i give up and go to sleep. I noticed morning hours are my best then the pressure in my forehead and neck come and go until finally it just stays. It usually starts with a weird throbbing in my head when i get up from my desk mid morning. I have numb fingers and toes that come and go. Little black whispy floaters as i get tired. Last few days i have an ear that feels stopped up right before the head pressure starts. So many weird symptoms. Last night i went to bed with my ears ringing well louder than the normal constant background ringing. It has been an exhausting year and as afraid of the LP as i am i would rather get a diagnoses and relief at this point than be told i am just having anxiety all day and sent gome with another scrip for xanax. Which by the way does nothing but make me sleepy!!!! I appreciate everyone's help. I have scoured the internet and the only thing this comes close to so iih. It seems the symptoms can affect people in many different ways and my prayers to every person who suffers with daily pain. I haven't had a day in over a year i felt good. I just want 1 good day.

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I do hope you get sorted love. my daughter is on constant medication for it now and has to have regular blood tests and has to see a dietician which is annoying as she isn't obese . Pray you get sorted xxx

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Hi kristy I know this post is 4 months late, but was just wondering how you are getting on now after your LP? If your still here let us know...hope all is well x