Migraine

I will try to make this short but bear with me.

Since January 30 I have been put in the hospital for Status Migraine three times for DHE treatment. The last time they did a lumbar spinal tap and my pressure came back twice what it should be

So I had a shunt put in on March 6th to reduce the pressure and was told that I was probably not having Migraines at all. Well three days later I am in horrible headache pain again. I called my Nuerosurgeon and he had me come into the ER and he did a CAT scan, X-Ray ect. they all looked good. He also tried to adjust the shunt but was unable to. Not sure why. So I was sent home, still in pain and reffered back to my Nuero doc for an appt today.

If your still with me, I am gettin to my question.. sorry.

Went to my Nuero today and he basically told me he has done all he can do for me I did not know wether to laugh, cry or ring his neck. He thinks I am not having Migaines and that now with the Shunt the prssure is to low and I should go back to the Nuerosurgeon, and the nuerosurgon says it migraine and I should be seeing the nuero doc. Needless to say I am looking for a new Nuero doc.

Has any one had experince with a Pseudotumor and Migraine and what did you do, what treatment worked, what type of Doctor treated you?

Thanks for any info and I am sorry if my spelling is way off but my head is killing me right now.

Thanks agian.
B

B,
Oh I am so sorry you are going through a "shuffle" by your doctors. Personnally, since I have a good primary care doc, I would go into my PCP immediately and get s/he's advice on how to proceed.

I know there are a few others with your problems or have experience with it, and may have a better suggestion for you.

Take care.

Cindy

B,

I'm so sorry you're going through such a rough time right now. I'm happy to hear you're looking for a new Neuro. You may want to consider seeing a Migraine and Headache Specialist to help you get to the bottom of this:

Migraine and Headache Specialists - What's So Special?

While I don't have any personal experience with Pseudotumor Cerebri (IIH), I can at least get you started with this article. I hope it helps!

Pseudotumor Cerebri (IIH) – The Basics

Please take care and let us know how you're doing, okay?

Hugs,

B,

I don't understand. You said your pressure WAS what it should be? If so, why were you diagnosed with pseudotumor, and why the shunt?

I was diagnosed with pseudotumor several years ago. At the time of the lumbar puncture where the pressure was found to be high, my doctor drew off enough fluid to put my pressure in normal range. Then he prescribed a medication to keep it there. My Migraine frequency was instantly reduced by 50%. Pseudotumor can indeed trigger Migraines or headaches.

Terri,
I think my post was not clear, opps. I just read what I posted and I think I typed a jumbled up mess. My head was hurting so bad, I should have waited to post.

When they did the initial spinal lumbar the pressure was two times normal what it should be, I belive it was 43 and normal is 20. That is why they did the surgery and put the shunt in.

Now after having the shunt placed they are thinking they have the pressured adjusted to low, and that I am having low pressure headaches. I went to the Nuerosurgeon today and he said he had it set to 8 and he was able today to set it to 14-15. I hope that makes more since.

He has me going back to see him on Friday to take stiches out and she if another adjustment needs to be made. I however am stil in a lot of pain. This to me still feels exactly like things felt before (when they and myself thought it was migriane) before the shunt was placed. This is now five days straight of of horrible headaches.

Should the shunt have not provided some releif or is this a pressur issue and a migraine issue fighting together. I am just so down in the dumps and desperate for relief. Even the Doctors feel baffled, or so it seems.

I hope this makes more since now.

Thanks for all of your help, kind words, and advice.
B

Hi my son who is 6 is being assessed for a shunt at the moment. He has had 3 LPs with an opening pressure of 42, 38 and 35. We too have been playing ping pong between the neuro surgeon and the neurologist....migraine...IIH....migraine....IIH....migraine.

Anyway from what I have read of shunts it takes your body a long time to adjust to the change in pressure particularly if your pressure was 43 and they have taken it down so low. From speaking to others it seems to be the higher your pressure and the longer it has been elevated the more likely you will be to suffer with low pressure symptoms after a shunt. It takes most people at least 4 weeks to adjust to the change in pressure. After that they are fairly good.

We recently saw a neuro in the hospital who was great. She has been spot on with her assessment of our son and she was the one who told us that such a dramatic change in pressure after a long period of high pressure sends you into a kind of shock. You get used to functioning at 43 instead of 20. It made alot of sense to us as he suffered greatly after his LP where they reduced his pressure from 42 to 11.

I read your post when you went into hospital and it made me feel very uncomfortable. It sounded so much like my son that I wondered if you had IIH. I am surprised they moved to a shunt so fast. Was Your eyesight threatened?

I hope you start to feel better soon.

I am sending you some much needed hugs as I know exactly how frustrating what you are going through is. Daisy

Hi Magiwill,

I just had an LP last week, my pressure was not very high but I did get a bit of relief from the tap.

Daisy put it in pretty good terms. I have read somewhere something similar to that.

So what did the doctor say Friday? Here are my thoughts:

-Find a neuro-ophthmalogist to make sure your optic nerves are ok and you are not losing any vision which may become permanent if not treated. Are you near Raliegh? This link may be very interesting for you to look into:Raleigh Neurology Neuro-Ophthalmology Services I don't know anything about them other than they are list on the North American Neuro-Ophthalmolgy Society as is my neuro -ophth and I love her!

-Get another opinion. I wouldn't have any more surgery til I had another doctor, where it was a neruo-ophth, or Migraine specialist, check me over. Medications can reduce CSF as a first line.

- Check out the IHRF site for more information. They seem to be pretty accurate. You can find that HERE

Let me know what you think ok?

Thank you so much for the replies.


I did go back on Friday and had the stiches removed. I saw my NS nurse ( who I adore, she is so honest and carring) and she said that my NS did not want to do another adjustment and see how the weekend went and for me to call back on Monday.

Well lets just say the weekend was not good and has brought on a whole new set of symptoms Now I am feeling like my ears are drowing in water, I am dizzy when standing or sitting and my headached continue from 3-8 on a pain scale at any given moment.


Dasiy 2- the reason they did the shunt so quickly from my understanding (which looking back I wish I had had the time to research more options and ask more qustions) is because I had been on Diamox and Topamax since first of Feb which should have reduced spinal pressure and the fact that b/w two spinal taps the pressure did not reduce much. Wether or not these were the right choices it is what my husband and family helped me decide and what the Neruo said we needed to do. Actually his exact words were "You are delusional if you think you are not having surgery) Nice huh

Nancy- The last time I had my eyes checked was back in late August when I had some weird visual distrubances (flashing lights) small sign looking back at it now. As of now the only thing I have noticed started Saturday and has only happend twice, when I was looking in a makeup mirror and trying to look down phriphrial (sp) my vision blurred. I will keep an eye on that and thank you for the link, I will look into that.

So wheww....if your still reading thanks, I know this is long and drawn out...

As of Friday I "fired" my Neurologist. Well basically we fired each other. He told me there was nothing he could do for me anymore since he was not familar enough with this. When I asked for a refferal he shrugged his shoulders and said to ask my GP. What a nice guy

I do however love, love, love, my Neurosurgeon. He has been upfront and honest this whole time. He has said that he is only the technical end of things and that I need to find a Dr. that can treat and manage the symptom end and that he will help me find such.

I will call them tomorrow and probably go in and see what is going on.
This is not easy and my head pain is the worst symptom.

I still wonder if I am batteling migraine also

Thanks for listening and for all the help that these boards have been.

B

Also, BTW I have found information by searching Pseudotumor Cerebri and also Intracranial Hypertension.

Trouble is the disease is so rare, that finding a Doctor who knows about it enough to treat it is my issue.

Take care everyone

Hey it was good to read your story Magwill so dont worry about the long post. It explained lots.

I have found IIH support in the UK to be good for info. I have not got a link but just google it and the forum will come up.

Have been thinking of you and hope it all works out. Daisy

Hey Magiwill,

I've been thinking a lot about you and wondering if you looked into that doctor in Raliegh,NC I gave you? On her website it says she specializes in IIH (PTC) so that would be a good start. Here is the link again: Raleigh Neurology Neuro-Ophthalmology Services

Since you need another doctor, a phone call couldn't hurt. And it is possible to have more than one type of headache disorder i addition to Migraines. For example, I have IIH and Migraine without aura, typically menstrually triggered, but not always, and chronic head pain (post-concussion syndrome.)

Sorry to see those words together. I just put my first post up and was talking about the same thing. Was diagnosed with Pseudotumor Cerebri and 20 while pregnant and shortly have that started have migraines. Have to get spinal taps to relieve pressure and it always leaks so then have to go back to hosp and get blood patch to stop fluid from leaking. Had that done bout 4 times in last 15 years.

Every now and then, it just flares up, sometimes they will just give me diamox and that will reduce the fluid. Its actually hard for me to tell when it is those headaches becuase for me they resemble a bad sinus headache as it is pressure. It was a few years later that the migraines started, few a year, then monthly. last 4 years been on and off every month and last year and a half been almost constant. Pretty much the only time it isnt is if Im taking pain medicine. I dont think ive ever had them at the same time but generally one they drain the fluid you should be ok with that as long as its not leaking and treat your migraines.

I see you dont live in VA but just in case I do not recommend Neruological Associates. Doctors are ok but way, way to busy. Never return phone calls. Couldnt even get a return call to my pcp to set me up an appt. Had my spinal tap leak once and was trying to talk to the dr. left three messages he never called. the last time i called she said honestly, unless you go to the er ur not gonna talk to him. I know that they are busy but I want a doctor that cares about me and my well being and will take the time to hear me and come to a mutual agreement about our next step of recovery.

Please let me know if you find someone because although my pcp is great and have been sent to numerous other docs im not getting any relief. Someone out there can help us, we just need to find them! By the way the doctor that treats pseudotumor is a neuro-optomolgist. From what ive seen there are not many of them around

Kim,

A neuro-ophthalmologist is not necessarily the doctor to treat pseudotumor cerebri. It totally depends on the amount of experience he or she has. Dr. Yount, a Migraine specialist at the Jefferson in Philly diagnosed and has been the one to treat it for me, very well and successfully. I only had to have one spinal tap / lumbar puncture, and had no problems with it. I was up and walking within 30 minutes. No leaking, no spinal headache.

Hi-
I too am diagnosed with psuedotumor. My neuro headdoctor from MHNI in Mi recently left for PA. My new dr there has suggested my having a shunt- okay acutally he said I should have one, a little bit more forcefully than a suggestion LOL. Diamox keeps my pressure under 40 and my last LP a couple of weeks ago it was 23.6 which was pretty darned good. (Yet as soon as they drained it to 18 my migraine began to dissapate). The new dr increased my Diamox post LP. I see him again June 1st and am trying to do as much research as possible into the shunts. Since there are people here with actual experience perhaps you can tell me how easy or hard recuperation from the surgery is and how long it takes to recover on average. You see I have already had a couple of weeks off work for medical reasons this year and I don't think my boss will be too tolerant of alot of additional time off. Also, I understand that the shunts have a 50% failure rate due to infection or blockage. Has anyone here had to have their shunt redone? I admit it I am nervous about this treatment.

I do not have a continuous migraine post LP but have had a migraine of at least a 4 intenstiy for all but 2 days. I do get migraine with aura and atypical migraine as well as having the IIH/PTC. Plus hormonal migraine 2 or 3 days a month. And weather related migraine.

My neuro-optho told me that my eyes are not involved which is a good thing. Yet oddly I have recently begun to have trouble with blurry vision and trouble focusing on distance if I have been reading close. He had no comment about that except to increase the strength of my readers. Ha! Stronger readers make letters fuzzy and give me headaches........

I am sorry there are those of us here that share this common problem. Hope we all feel better........

Hey there,

Ok, let me see....your diamox is increased and your continual Migraine is not so bad continual. When they drain the fluid to 18 the pain is better. How about letting diamox work for a bit before the surgery? Maybe all that was needed was a dose increase or is that wishful thinking?