In a follow-up to something that came up on my MRI, I recently saw a neuro-opthamologist to check it out (recommendation from my neurologist, although my neurologist thought it was highly unlikely that I have this). My neurologist thinks I have MAV. So I was sitting in the neuro-opthamologists exam room, and he was saying he doubts I have this too, so I wasn’t worried at all. Then I was hit with the news that I DO have a mild case of pseudotumor cerebri (idiopathic intracranial hypertension), not a tumor, but something that mimics a brain tumor. It’s a condition of high pressure in the fluid around the brain. I left the appointment crying, feeling horrible, and having tons of questions. What is this exactly? Do I really have this or do I have MAV? Or do I have both Psuedotumor Cerebri AND Migraine-Associated Vertigo?
At my next appointment with my neurologist just a few days later, I asked her if she thinks I have one or the other, or both. She said she does not know, but she has never seen a case of pseudotumor that causes the dizziness and vertigo that I have. I am writing to ask if anyone has been diagnosed with pseudotumor and possible MAV, then later found out it was not MAV, and that the pseudotumor was causing all their symptoms.
If I had to guess, I would think that I have both things. My symptoms include 24/7 dizziness/vertigo/off balance, headaches about 50% of the time, chronic fatigue, an overall shaky feeling, a feeling of a heavy head, and sometimes brain fog. As I wrote in another post, my problem started about 3 years ago - I would have 8-10 hour episodes of dizziness/vertigo, headache and fatigue. These episodes would only come about once every other month back then. Then they became more frequent over the years - once a month, twice a month, then once every week. In October I got off my birth control pill, and then all of a sudden I had episodes every day, but they wouldn’t last all day long. This went on for all of October and November 2011, with an occasional good day. Then suddenly at the beginning of December, the dizziness/vertigo was 24 hours a day, every day of the week. And that’s where I am now.
Sorry for this news for you.I could be wrong but you might want to check out the cerbral spinal fluid threads.A lot of work at Duke university in the Usa is happening with this.
I’m not sure if it is the same thing but it sounds like it may be.
It is always a shock to receive news about our health that is unusual and unexpected.I wish the best for you and I’m sure some other people will come along and offer their advice.
Hang in there!
Hi, I would def. check out all the posts on here about CSF pressure and Dr. Gray at Duke. I posted several of them myself. High CSF pressure and pesudotumor are very similar.
I agree with the posts above. Some medications have migraine preventative properties AND are suspected of lowering CSF pressure. I believe Verapamil is one, but dont take my word for it. Maybe someone else can post this information, one of these medications might be a great place to start.
I would have my neuro contact Dr. Gray or Dr.Kaylie at Duke.His contact info is;
David M. Kaylie, MD FACS
Associate Professor
Medical Director Vestibular Lab
Otolaryngology - Head and Neck Surgery
DUMC 3805
Blue Zone Room 3556
Durham, NC 27710
Tel: 919.684.6968
Fax: 919.684.9108
The good news is that high csf pressure is easier to treat than low…because there are drugs that can help. Things that can increase pressure are any foods with caffeine, Salty foods that cause you to retain fluid including processed meats, cheeses, etc. (Basically the migraine diet is a god place to start to organically reduce pressure)
I know many people with MAV are also med sensitive, and if you have that issue, I would caution about starting with too much Diamox…a little can go a long way. If you are not med sensitive, no need to worry then. Diamox is extremely fast acting, it can reduce your pressure within a short time of taking it, so very useful in diagnosing, but I find the swings to be not so gentle. (remember though, I am extremely med sensitive) Other drugs that reduce pressure are Topamax and Effexor (I have heard)
Just to provide a little encouragment…an answer is what we are all seeking, I hope you have found yours, and if this turns out to be it, at least the docs will have a direction to proceed that could help all your symptoms.
Thanks for all your responses. The pseudotumor was diagnosed through some type of eye test. The other way I could have done it is with a spinal tap, which is more invasive, so I chose to do the eye test. For the past 2 weeks I have been transitioning medicines for anxiety (caused by all my health problems going on), so I haven’t started treatment for the pseudotumor yet, because my neurologist only wants me switching one medicine at a time. I see her in a couple of days to decide what the next step is. I am currently taking Nortriptyline 25 mg, and it is not helping for my MAV (if I have MAV). My neurologist has a couple of suggestions for the next move. One suggestion is to up the dose of Nortriptyline, and start taking Diamox for the pseudotumor. The other option is to stop Nortriptyline, and start Topamax, which will help with both MAV and pseudotumor. And I have thought of a third option: stop Nortriptyline, and start taking Diamox which only treats pseudotumor. If I do this, and I get better, then I will know I don’t have MAV. I am really not sure what to do. I have been on the 25 mg Nortriptyline for about 8 weeks now - and since it is not making me feel better, I’m not sure if increasing the dose will help, or if I should switch to a different med for MAV. If you all have any suggestions, I would love to hear them. I want to make a smart decision for my next step, hopefully something that will work. Since I have to be on MAV meds for 6-8 weeks to know if they will work, that’s a lot of time to waste for it not to work. I just recently lost my job because of all of this, and I am just praying for a miracle that I begin to feel better soon.
It seems to me that having two rare disease simultaneously would be not super probable. MAV is essentially a diagnosis of exclusion (ruling all else out). I would go with your neuro, but does she think you have both and should treat both?
If you do go on Diamox, I know many who have been on it for rebound pressure after csf leak patching or for psuedo-chiari and they say that the extended release is easier from a side effect standpoint, but not sure of the dosing, so you may need to start with small doses in tablet form…
I don’t know anything about Nori…but there are some recent strings on this website, as well as you can look at past strings by going into this are of this forum
Maybe getting this diagnosis will bring you closer to relief…
oh and forgot to mention that a pseudotumor means brain tissue will not absorb used CSF as if a tumor is preventing the absorption. Which causes the high pressure leading to dizzy symptoms.
Diamox and Topamax both take away fluid from the brain, but I think Diamox is more instantaneous. There are side effects that are annoying, but better than being dizzy imho.
Hello all, I wanted to post an update on some news I recently received. I went to the neuro-opthamologist for a check-up and my pseudotumor cerebri has been treated by taking Diamox. So I do not have it anymore (although they said it might come back). So I got an answer to my question because I still have the same dizziness and vertigo symptoms. So my neurologist believes even more that I have MAV. I probably do have it, but am not 100% convinced of it until I find a med that helps with the symptoms. I’m trying Nortriptyline 50 mg now - has that worked for anybody? How long did it take to work?
Even though the issue is no longer seen in your eyes, that does not mean that the high csf pressure is gone, and could very likely be causing your other symptoms of dizziness. Many of the MAV drugs help with decreasing the csf volume, but Diamox is the most quick acting. Your body creates enough csf fluid to reach your csf capacity 3 times (every day!). If your body was creating too much csf before, it is unlikely that a quick acting drug like Diamox would cure the problem forever. If you have underlying high csf pressure, I would get a second opinion about treating it. I agree with James that a good place to start would be Dr. Kaylie at Duke. He understands all of this, and you can likely reach him via email. David Kaylie, M.D. [david.kaylie@duke.edu]
It’s so nice to meet more of the guinea pigs from Duke club. I am Number One G.P.. I was misdiagnosed Bell’s Palsy on March 23, 2008, seen at 3 different ER’s, all same diagnosis. I discovered after doing some extensive research that I actually had Ramsay Hunt Syndrome (RHS). It started with severe ear ache, blisters in the ear (shingles), unilateral facial paralysis and severe vertigo. The blisters healed, the ear ache became tolerable, the facial paralysis has greatly improved, the vertigo was an issue only at bedtime. What I did have was chronic disequilibrium and balance issues, nasty brain fog, double vision, tinnitus, hyperacusia (some sounds seem very loud), slight hearing loss and headaches that would vary all over the grid. My headaches sometimes were just in the post herpetic (neuralgia - PHN) region of my eye socket, other times the top left of my head, or the base of the skull, or the sinuses, or both sides (like in a vise). Been quite a trip.
I have been seeing Dr. Kaylie since March 23, 2009. Last year he told me about a conversation he had with Dr. Linda Gray about my symptoms. Dr. Kaylie was thinking I had mild viral encephalitis preventing my brain from compensating for the loss of use of the vestibular system in my bad ear. Dr. Gray thought to check it through a lp, at the same time check the idea of abnormal CSF pressure. Had my first lp in Aug 2010. In less than two weeks I had major symptom relief. And so the project was born.
I finally relented and had a lp shunt installed on Nov. 1st of last year. My symptoms turned to low pressure, especially the headaches. UGH. Had a lp recheck in March and was low, so Dr. Linda added imitation spinal fluid, then the Neurosurgeon’s PA adjusted my programmable valve on my shunt, and I am finally getting big time improvements. Cognition is greatly improved, as is balance, double vision is gone, as is the tinnitus (thank God for that one). Headaches come and go, no longer have a daily ono-stop variety. I am having migraine auras coming more frequently. Not sure what that is about. Maybe I need to start doing the migraine diet to see if that will stop those. I currently take Diamox and Furosemide and amitriptyline (but may go back onto Gabapentin). At age 59 (I was 55 when I got sick), not quite sure what is going on. The Duke Docs are treating me for PTC/SIH (Secondary Intracranial Hypertension - secondary to the zoster virus ((RHS)) ).