Hi everyone. My name is Heather and I'm 24. I have had migraines since I was a high school sophomore (so about age 15). The migraines were really bad and, after trying everything they could, my pcp referred me to a headache specialist. My migraine doctor (as he is known in our household) is wonderful. We made a ton of progress and he also got me off of a lot of meds that weren't doing anything but causing more problems. However, back in November 2010, I started with a migraine that just would not go away. We tried a TON of medications and a nerve block, but even that didn't help my pain. He admitted me to the hospital to try another drug and when that drug didn't touch the pain, he had me get a spinal tap. That first spinal tap was like receiving a miracle! It didn't take away all the pain, but it made it so that I could function again. At the time, my migraine doctor told me that I was borderline BIH (or IIH), but didn't confirm it. Over the past couple of weeks, my migraine has gotten so severe that it takes all the energy I have to move from my bedroom to the couch, where I spend most of my day in pain and trying to sleep it away. Last week was horrendous for me as I was starting all over with the attempt to get the migraine under control using medications. However, after all the pills and the 8-hour ER visit, my migraine still won't budge. I saw my doctor yesterday and he is changing 2 of my medications. He asked me if I had any questions and so I asked him about another spinal tap. He looked up at me and said, "I think that is a great idea!" So, I have another spinal tap scheduled for this Friday. We shall see how it goes. At the very least, I want my migraine to become more manageable (where I can be a productive member of society). However, most of me really wants the pressure reading to be high so that we can decide if I do in fact have IIH. If I do have IIH, I know that I do not want to have to keep getting spinal taps every 6 months or so. I would rather have a shunt put in. Heck, even if I don't have IIH (Which, at this point, I'm pretty sure that I do), I don't want to keep getting spinal taps to relieve my migraine, so I still might ask for a shunt. This one migraine that I'm talking about, by the way, is on day 216. So now that I have rambled on about how I feel that my life is a living nightmare...

Thank you for having a place where I can find help and ask questions of those who have experienced this condition before me.
Peace,
~Heather~

Hi Heather, welcome to the group! I'm so sorry to hear you've been struggling for so long!!! I've had daily headaches for over three years now, so I completely understand! I think you'll find a lot of good information and support here.

I'm glad you advocated for the spinal tap (Lumbar Puncture), but I'm wondering if you've ever had a second opinion. I assume that your "migraine doctor" is a neurologist, so I don't understand why he didn't pursue IIH when you responded so favorably to the last LP? It may be something you want to consider, if you find relief and don't get anywhere again. There are a lot of different types of headaches, but it's my understanding that only IIH and spinal headaches are affected by a change in CSF.

I would suggest looking at the guides regarding Headache Causes and Treatments, and Talking to Your Doctor About IIH. You can also go to www.ihrfoundation.org to find a doctor in your area. You can contact me or any of the admin with any questions. Good luck with your LP..keep us posted!

Julie

Hi Heather and a warm to the group. How horrible you have had this for so long and without much relief. Having daily headaches can be quite a drain and really get you down, and I applaud that it was you who suggested the spinal tap, when a lot of people wouldn't.

I can only agree with Julie's very sound advice. Keep us updated on your progress and I do hope this is resolved for you soon, so that you can at least have answers and a proper diagnosis and treatment.

Heidi

Hi Heather and welcome. I have to agree with the others. I am also wondering if any of the meds you have taken included diuretics? If all you have been given is stuff for pain, then I would be looking for another doctor!! Reminds me of what I have heard on Doctor Radio I think it was, about if you are in pain because you have a splinter in your foot and the doctor just keeps giving you pain meds, you need to see another doctor. Especially if you have been in pain for so terribly long, you deserve a break!!
Make sure when you have your lp that you have them tell you your opening pressure and have them bring your pressure down to a more "normal" pressure and give you diuretics (usually Diamox) to help keep it down.
I hope you are able to get the help that you need!

Thanks for responding so quickly.

Julie: I have not had a second opinion. My "migraine doctor" is a family practice doctor (although I have a different PCP) with a subspecialty in headache medicine. He is not a neurologist. He really is a great doctor. The reason, he told me, that he has not officially diagnosed me with IIH is because the last spinal tap I had, the opening pressure was borderline. As for the type of headache that can be affected by a change in CSF, I am pretty sure that it is IIH and not a migraine, but the two are so similar that I just assumed that they were migraines.

Heidi: I had to ask for that spinal tap. It was the only thing that worked the last time. Plus, I'm open to trying just about anything to get rid of this headache, even if that means lots of spinal taps or getting a shunt put in or whatever else they can think of (obviously I'm not open to the option of leeching )

Wylee: I am currently on a diuretic called Acetazolamide (1225mg 2x/day). Also, thanks for the suggestion to ask the team doing the spinal tap to tell me what my opening and closing pressures are. I will definitely want that information.

In other news, my mom is trying to will the headache away with her own willpower. It's annoying and frustrating. She is acting as if I am just making it all up, which is NOT true! Last night at dinner she started talking about how I had been perfectly fine all day and then all of a sudden my head hurt again...any suggestions on how to approach her? If I do end up getting this diagnosis of IIH (which at this point I want, because nothing else explains this much pain and nothing working except spinal taps), I want my mom as an advocate for me, not someone who says to my doctor "Oh, she's fine right now but she puts on a good act for you when you are around" or something. I do have my dad advocating for me. It's taken him a long time to get here, but he is at the point where he knows that he can't comprehend my pain and he can't make it go away, but he is always there to offer encouraging words and lots of hugs.

So, spinal tap tomorrow and we will go from there.
Peace,
~Heather~

Hi Heather,
Having an "invisible" illness is indeed a very frustrating problem. I will defer to Heidi and the others who have had more experience in this area than I have. I live alone and don't bother with my friends and neighbors anymore, they just don't get it, although they now understand my fatigue since I have told them about the "spoon theory."
What I did want to bring to your attention is this:
I am a part of an ongoing research project being conducted at Duke University, in Durham, North Carolina, on treating the "dizzy" patient. The common denominator the Docs have found is the abnormal CSF pressure, and that EACH PERSON HAS THEIR OWN NORMAL PRESSURE READING.
They have found that there really isn't a "firm" dividing line between a "yes, you have IH" reading, and a "no, your reading is borderline so, even though you have the symptoms you do not have IH." Just doesn't hold up. Feel free to have your Docs contact my Docs if they need more info about this. They are happy to share their findings, which are still in the early stages, but are amazing. Check the other symptoms of IH. If they seem to match what you are feeling, in addition to the severe headaches, you may indeed have IH.
My Doc can be reached at:
http://otolaryngology.surgery.duke.edu/research/clinical-research/vestibular-disorders-clinic

Wylee - I have done a little more research (I'm a college student on summer break...I didn't think I would be doing research...) and I believe that I have the following other symptoms...

• Headache

• Pain behind the eye

• Pain with eye movement

• Tinnitus

• Nausea

• Fatigue

• Photophobia

• and sometimes Double vision.

Anyway, I have my spinal tap in 5.5 hours...yes I'm counting down. I do hope that this helps us figure out what is going on...I'm not scared of the procedure, but rather that they don't find anything wrong and I'm back at square one. The last spinal tap, my opening pressure was 230 and my doctor called that borderline, but the numbers I've found in the past couple of weeks suggest that maybe that isn't borderline...thoughts?

They are all the common symptoms of IIH, and I jknow you jmust feel very anxious right now, and I would definitely print off the information you have found and present it when you go for your spinal tap, and say this is what you've found, and could it be what's happening in your case.

I know it's hard to relax through a spinal tap, and I used to sing my favourite song in my head, or go through the alphabet naming things, just to keep me focused on something else rather than what was going on.

I hope it all goes well and I'll be thinking of you. Keep us updated on how it all goes, and stay strong.

Heidi X

I know you're probably preparing for your spinal tap at this moment, so I'm sending all my positive vibes your way! Getting the opening and closing pressures is a great idea..I wish someone had told me to track them in the beginning! Unfortunately, Wylee is right..everyone is different, and basically, a number is just a number. My initial opening pressure was only 21, so my neurosurgeon dismissed it. My neuro-ophthalmologist kept pushing the issue because my symptoms improved significantly after the spinal tap, but noone would listen. After a few days, my headaches came back and I lost more vision. The neuro-ophthalmologist treated me w/ medications, but it took several months for the neurosurgeon to jump on board..of course my pressure was up to 38 at that point, so it was easier for him to accept. I think it's great that you have a primary physician that you trust, but it's also important to find a specialist that is familiar w/ IIH.

As far as talking to your Mom, I would suggest looking at the guides. Informing People About Your Condition is written in a very supportive language and gives suggestions on how to talk to friends, family, employers, etc. I think you'll find that education and candid discussions about what you experience and how you feel work the best..of course in saying that I realize that every person is different and every family has there own dynamics, so you also have to trust what you know about your Mom. I think you presented it well here, so maybe start w/ that and follow it up w/ education about IIH.

Diagnosis can be a long frustrating process, so hang in there! I hope you find some relief (and answers) today..keep us posted!

Julie

So, the spinal tap went well, physically speaking. However, the results are frustrating. My opening pressure was 15. They took off 10cc of fluid anyway and my closing pressure was 13. (Back in November when this all started, my opening pressure was 23 and my closing pressure was 18) I am starting to feel better, little by little. However, I don't know what my doctor is going to say since my pressure was "normal". I do know that I need to get this under control before I go back to school in August. If my headaches flare up again while I'm 6.5 hours away from my home and doctors, I'm going to be in trouble. I see my doctor on Monday (which is a week earlier than he asked me to come back to see him, but I'm determined to not drag out this diagnosis and treatment). I also know that I don't want to have to get spinal taps every couple of months if I can avoid it. I'd rather have a shunt put in, if we need to go there. I also know that, while I'll probably be on medications for the rest of my life (for both this and other medical problems I have), if I can reduce the number of pills I take everyday by having another procedure done, then I want that other procedure. Whether that be a shunt or something else, I don't know.

I have to agree with you, getting a diagnosis and getting it under control is very important and hopefully your doctors will do this for you. I don't know if they will agree to a shunt at this stage as they usually only decide on fitting one when your vision is in danger and your symptoms worsen. This is because a shunt isn't a temporary thing and is usually permanent.
If they can work out the best treatment plan for you and stabilise your symptoms, this should help and allow you to have a more comfortable life with IIH.

We do have a guide on talking to your Doctor and one for talking to Neurosurgeons about treatment for IIH, and it might help you especially question wise, as we have prepared the most comon ones to ask them, which should get you the best and more concise information you need.

I know this is a very frustrating and disheartening time for you, but stick with it and talk to your doctor about how you feel and about what is the best treatment for you to allow you to continue with school.

We're always here and you can even come and have a good rant.

Well, it's official. I have IIH. Now that the diagnosis has been made, I don't really know what to do next. I have to work stuff out with the hospital up near my school so that in case I flare up again, my doctor can call them and have them do a spinal tap. Other than that, for now, we are keeping everything the same with medications. I see my doctor again in about 2 months, before I go back to school. I'm assuming that that means that if something goes wrong between now and then, I can go in. I just kinda want to curl up and cry now. Any suggestions on things I should be watching for or keeping track of, or anything? I'm already keeping track of my pressures when I have my spinal taps. Any resources I should read up on? I guess that now is as good a time as any to go through the guides you guys suggested, huh? *deep breath and baby steps*
~Heather~

Also, how long do the effects of a spinal tap usually last? Friday was my spinal tap, and today (Monday) when I woke up my headaches were significantly less (4/10 instead of 9/10), but then as the day has gone on, the headache has gotten worse again. Any thoughts?
~Heather~

Oh Heather, I'm sorry..I'm glad they were able to finally make a diagnosis, but I know it can be very overwhelming. Maybe now they'll be able to find a treatment that will provide more consistent relief for you! I have difficulty w/ medications and have had to change physicians a couple of times, so I keep track of what I tried, when I tried it, and how it affected me. If you're not getting relief w/ current medications, I would ask for increase or to try something new.

I think the effects of the spinal tap vary depending on the person, the pressure, and how quickly it's building. I usually felt awesome the next day, but headaches were back w/i 2-3 days..although there were times it took weeks to completely build. Unfortunately, the spinal taps cause scar tissue build up and other damage, so they aren't anything you're going to want on a longterm basis..hopefully your physician will find a medication that will help manage the pain and slow the process.

I'd also make sure you have your vision checked regularly by a ophthalmologist or neuro-ophthalmologist. You can find a doctor at www. ihrfoundation.org, if you don't already have one. Definitely review the guides here, but you can find more information about IIH and treatments on their website. As always, you can pm me, Heidi, or any of the admin team..we can provide support online or set up a time to talk..whatever you need!

Take care,
Julie

Ok, I'm really scared right now. It hasn't been a week since my spinal tap and already the pain in my head is coming back with a vengeance. Monday the pain was a manageable 4/10...it's back up to a 7/10. I don't want to nag my doctor about it, and I don't want to overreact, but I don't know what else to do. Plus, I'm starting to feel pins and needles in my hands and feet, which could be from the Acetazolamide, right? Things on Monday seemed so good when I saw my doctor...what happened?!
~Heather~

I'm sorry..that's so frustrating! I would definitely follow up w/ your physician..he needs to know how quickly it's come back and any additional symptoms..they can't make an effective treatment plan for you, if they doesn't have all the facts. Finding the right treatment can be a long overwhelming process, so hang in there!!!

I would say things were better Monday because you just had the LP and they took off fluid. I know it's frustrating, but you just have to breathe. I know it seems silly, but the more frustrated and worked up people get, the more pain we have, we tend to scrunch and hold our breaths. Do your best to relax and stay calm. A lot of the things you're experiencing are typical. Unfortunately, the positive affects of LP don't always last..that's why people tend to end up w/ shunts. At this point you just need to find a way to reduce your pain. Have you tried cold or hot packs? Sometimes they can help..over your eyes, at the base of your neck, or anywhere that you may feel discomfort along your spine. Also, I have a 'sweet spot' that helps lessen the pain. Lay on your side somewhere between a 45-60 degree angle..just prop yourself up w/ pillows until your comfy. It doesn't completely take away the pain, but hopefully you'll find some relief.

I'm at work now, but I'll make sure to check in from time to time over the next couple days. Let me know how you're doing ..you can also pm me or we can arrange a time to talk. I'm sure any memebers of the admin team would also be willing to help..that's what we're all here for!!

Take care, and definitely keep us posted!
Julie

So, I managed to sleep for about an hour...didn't improve anything, but it got me through an hour. I called my doctor but he's not in the office today. I was then pretty rudely told that I should contact my primary care physician...who is the one who referred me to my "headache doctor" in the first place...she isn't going to have a clue what to do for me. He is in tomorrow so I plan on calling as soon as the office is open and saying "Here is the situation, here is what I need/need to know. I know that he isn't in until this afternoon, but I need this message to get to him as soon as he sets foot inside the office!"

It's interesting that you mention laying on your side. It's the only position I can tolerate for any significant period of time. Sometimes I use a heating pad on my back, sometimes not. I've tried ice packs, but I'm naturally a very cold person (my "normal" temperature is 97.4* not 98.6*) and my mom keeps the house temp set at like 66* because she is a naturally very hot person, which means that I am usually freezing year round. (I sleep with 3 blankets plus my sheet in the middle of the summer...more in the winter)

I am trying so hard right now to not just curl up and cry. Plus, my mom is sick, so I'm trying to deal with my pain quietly so that she isn't disturbed. It's days like today that just make me want to give up trying...(please don't take that the wrong way...I'm not going to do anything).


~Heather~

Heather, I am with you as a "cold person", I have to use blankets all year round. I sometimes have success using heat on my neck at the same time I use cold at the base of my back. I don't now if it's just my imagination, but even if it is I feel some relief so I don't care. I'm also a side sleeper. Another weird thing that sometimes helps when my headache is really bad, I wrap an elastic bandage around my head covering my forehead and temples. I leave it on for 5 to 10 minutes then take it off, I usually get an hour or two relief from that.

Betsy

Welcome Heather! I hope you find a answer to whats going on with you!

My headache is as close to a 10/10 as you can get w/o actually being a 10. I called my doctor this morning and left a message for him. As of right now, he hasn't called me back, so about an hour ago, I called them to see what the time looked like on getting back to me. Through 3rd hand knowledge, the person who I talked to said that he didn't know why my headache would be so severe after it had gotten better and something about referring me to the Cleveland Clinic. Now, I have no idea where anything actually stands because it was 3rd hand info, but I'm at home, with nothing much that I can do, ready to rip my head off because it hurts so bad. I am trying with all my might to not cry, but it's not working very well. Plus, if he does refer me to someone/some place else, I am left in pain until I can get in to see whoever I'm referred to. I don't know how much longer I can just "deal" with this pain. And, if he is referring me to the Cleveland Clinic, that is at least 3-4 hours away.

I'm sorry that I'm just rambling...I just don't know what to do anymore.

~Heather~

Heather it sounds like you have a low pressure headache as a result of the spinal tap. Does it get worse when you sit or stand up, and ease when you lay down? 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.

The best way to cope with a low pressure headache, is to stay laid flat, plenty of fluid and some painkillers. The doctor can also arrange for you to have a Blood Patch which can relieve the headaches and pain, and lots of IIH'ers who have had these after a spinal tap say their symptoms are relieved almost immediately after one.

Ask your doctor about a bloodpatch.

Hope this helps.

Heidi xx

I wish this was a low pressure headache connected with the spinal tap. I did have a low pressure headache after the spinal tap, but it went away after about 2 days and the one I am suffering from now doesn't fit the description of a low pressure headache. It doesn't get worse sitting or standing up or ease lying down. It's exhausting, so I've been lying down a lot, but not because it makes the headache any better. Plus, there is no neck pain or vomiting. There is no fever, swelling, tenderness, or leakage.

It's just constant non-stop pain.

~Heather~

Does it feel like it did before the spinal tap? I'm wondering if your pressure has elevated again hugs. It might be and idea to go to ER and get a doctor to look at you rather than wait any longer. If this has been going on for a few days it needs to be dealt with sweetie. Is there someone who could go with you? I know it can take hours to be seen in ER but rather hours than days and I don't think you can go much longer with this kind of pain, and without knowing what's causing it.

Yes, it does feel like it did before the spinal tap...just with even more pain behind it. Plus, it hurts more than it use to to move my eyes and the pressure behind my eyes is more severe (although, so far, I haven't lost any vision or anything like that). My parents are around and we could go to the ER, but I have an appointment tomorrow with my doctor (the one who wants to refer me) and thus they don't want me to go because I can just ask the doctor tomorrow (a.k.a. they don't have much faith in me going to the ER). I would "love" to go to the ER to see if they can do ANYTHING...it's a matter of convincing my parents. I agree with you that I should go. I just don't want to hurt anymore.

~Heather~

A good compromise is to see your Doctor tomorrow, and see if he can do anything, if you go and you don't get any further and are left in the same situation, then go to the ER. Make sure your parents know that you've gone as long as you can with the pain and can't tolerate it anymore, and don't want to wait until it begins affecting your vision.

It would be a great compromise...if I thought I could make it through the night...

~Heather~

Heather if it has got to that stage, you can't go on like this and your parents must take you to the ER. They can't expect you to suffer like this and with this kind of pain. Please talk to them again and tell them you aren't prepared to suffer any longer.

I will talk to them...

Sorry about all of this...

~Heather~

Heather no need for apologies, that's what we're here for. We're here for you when you need help and support sweetie.

I talked to my dad...we didn't go to the ER...I see my doctor tomorrow...I see my life collapsing in front of me...

~Heather~