Wow this is very interesting. This is all new to me as my symptoms started about 9 weeks ago but have pretty much been 24/7. Are those of you who are interested, not found any success with any medications? I also had a spinal in April, I had my daughter by my 3rd c-section, but didn’t get dizzy till she was almost 2 months old. I’m am barely starting this medication journey, but if I do find relief is it safe to say I just have MAV?
Interesting… doctors have twice attempted a spinal tap on me (to look for MS) but were unable to get any fluid out.
The second time, it was done under fluoroscopy (x-ray) and should have been a piece of cake. The poor radiologist tried at least five times, punctured the canal every time, but the spinal fluid just wouldn’t flow no matter what she did.
This is interesting info, however.
just stumbled across this post. i had a hole after an epidural 15 years ago, it does cause probably the worst headache youve ever had and vomiting. I had many needles and eventually was taken by ambulance to another hosiptal for neurology checks. it eventually cleared after 10+ hours and mega drugs, i should have been given the blood patch i found out years later, but i have to say i didnt get vertigo at all. ive since had another 4 in one day for my back, no probs at all. Still an intersting study i do anything to clear up the spinning…
You can read about my ongoing experience posted here at
http://mvertigo.cloudapp.net/t/wish-me-luck/3143
I called the receptionist to see if my insurance would cover this and it won’t… 
I can switch from an hmo to a ppo in January '12 and see if I can go down that route…here’s hoping because I really would like to try this!
Anyone else?
Hello,
I went back to Duke and had the spinal tap, and learned my csf was low. This was confirmed by adding a saline type solution to my spinal fluid, which increased pressure temporarily, and caused my symptoms to go away. I then had a myleogram and found that I had two leaks in my neck. They did a blood patch. I have symptom relief as far as visual problems, brain fog, sensitivities to light and sound, and the dang buzzing sensation in my head that felt like a raw nerve.
I am two weeks out, and still experiencing fatigue and not perfect balance, but just waiting for some time to pass to see if my brain adjusts. I contacted the gal who I did VRT with for 6 months to see if I may have to undo some of that VRT.
I am definitely much better. Still hoping for more. Since my body was used to making extra csf to compensate for the leaks, I may have what they call a bit of rebound.
I did enroll in a study they are doing, which will be what they call a retrospective study, which follows and reports on patients they have seen and used this treatment. This is definitely experimental, and there are no long term results. The gal who has the blog has had a setback after 6 months of feeling well. There is a chance that the blood patch will not hold and you will need to go back again to get a synthetic patch.
For people with high csf, the course of treatment begins with drugs to reduce the csf, and it can take some fiddling whether you are high or low to get things right. This is somewhat art and science. I think this is definately a huge step/clue in solving the mystery of MAV and Menieres, it is still just early stages.
Interestingly, many of the MAV drugs reduce csf pressure, so that may indirectly and unknowingly be why they work.
Caffeine raises csf pressure. During my year of vertigo/MAV/ whatever you want to call it, I quit drinking coffee at the advice of the physicians. Looking back, I was worse after stopping coffee, which makes sense, since the caffeine was increasing my pressure.
inafog,
I hope you only improve.Good luck and thanks for keeping us posted.Sounds like Duke may be on to something.
That is so great you got to go inafog! I would love to go and am hoping I get a chance too. Thank you so much for sharing your experience with us. If you don’t mind me asking, I have a few questions.
Any ideas why you would have leaks? Did you have an accident of some sort?
Was the Spinal super painful and were you dizzier after the procedure?
Did you meet with Dr. Gray and Dr. Kylie?
I think they are onto something as well. Thanks so much!
Hello all,
Thanks for your encouragement. So I have been kinda running into the same issue each day, where I start off feeling good, but by the end of the day, I hit a wall, and feel bad again. I spoke with Dr. Kaylie again as well as been in touch with Dr. Gray. They both think that the patch was not complete in sealing the leaks in my neck, so Dr. Gray wants me to come back for the synthetic patch. This is based upon how good I felt for several days after the patch, was able to walk on the beach, went shopping at the furniture stores- no problem, for hours.
The synthetic patch should be fairly simple (1 hour) because they don’t have to repeat the myleogram.
We believe the leak was caused after I had surgery for skin cancer on my face, and the position they put my in to stitch me up, really strained my neck beyond its range. My neck hurt afterward, and the dizziness started 1 week after the surgery. It is true that csf leaks usually have some sort of trauma involved.
I really think we are on the right track, if we can just get the csf to not leak, then I will feel better. I am just not sure how long the patches can last. I will continue to update. Going to make travel arrangements for this month. Dr. gray said she can squeeze me into her schedule whenever I can get back there. She is awesome by the way!
Hi
I’ve followed this thread on and off but had another read through today and then googled Low CSF headache and similar terms and as usual, was amazed at all the poor folk out there on forums etc who are confused as to whether they have this or migraine or Meniere’s etc. etc.
From what I can gather, it’s a rare but fairly well documented phenomenon in the medical world. The Dukes study differs in its novel treatment approach.
It’s interesting it can be managed conservatively at home in milder cases. Bed rest and CAFFEINE {as it helps raise intra-cranial pressure) are advocated.
It’s also notoriously difficult to diagnose (sound familiar?) and something like 50% of all reported cases have been in the last 20 or so years, not because it’s on the increase but because diagnosis is better.
I’m particularly interested in it because I have such pain with my episodes which are relieved by lying down. The pressure feeling and dizziness is often worse on standing.
Just when I thought MAV was the definitive diagnosis… 
— Begin quote from “inafog”
We believe the leak was caused after I had surgery for skin cancer on my face, and the position they put my in to stitch me up, really strained my neck beyond its range. My neck hurt afterward, and the dizziness started 1 week after the surgery. It is true that csf leaks usually have some sort of trauma involved.
— End quote
That’s very interesting that they think that some kind of trauma is involved in csf leaks.
Thanks for updating and hoping you continue to do well.
That’s kind of ironic that they say caffeine can help,as so many migrainers are told to avoid it. You’re right so many overlapping areas.
After consulting with Dr. Kaylie and Dr. Gray today, I am going back for a Fibrin Glue (Tisseel) patch on Oct. 17th. I was told that my blood patch may not hold when it was done, and the fact that I was feeling so good after the blood patch, and then have gradually gotten worse symptoms back again leads them both to believe that I may have a small leak that was not sealed off so this next step is worthwhile. Since the leaks were found in my neck area, this type of patch should be long lasting. (according to Dr. Gray)
Since I am traveling from the West Coast, it is not a trivial matter to get there, but if I can feel as good as I did after the blood patch and it is long lasting, then it will definitely be worthwhile. I am told this patch will be much easier (about an hour)
This is the only thing that has provided relief for me from my chronic imbalance and all the symptoms that go with that. I really feel that I am on the right track here.
I can’t say enough about what amazing doctors both Dr. Kaylie and Dr. Gray are. They are so caring, upbeat, and hopeful. They are on the forefront of a concept that I think could end up being a treatment for many of these chronic balance and headache disorders! Dr. Gray is one of the top neuro-radiologists in the country. I will post again after my visit on the 17th.
Hey Scott, I’m very interested to know what your take is on this.
Have you had time to look into it? Wondered whether you’d tracked down the evidence base. There does seem a fair bit published on it. I wonder what the MAV gurus have to say on the matter. I see Hain has a page on it.
What’s interesting is that these ‘leaks’ can occur anywhere in the CNS. What seems to have started off as an alternative diagnosis to Meniere’s, due to leaks of CSF into the inner and middle ear (and CSF running out of the ear or nose on exertion/valsava - nice), seems to have spread to MAV, probably because of the known effect of low CSF to cause headaches. It’s quite scary to think it’s possible to have mini but multiple traumas to say the CSF canal in the neck due to dodgy neck movements. I’ve often started up a spin by a sudden neck turn. Also these leaks can apparently heal themselves with bed rest and drinking plenty of fluids…
The problem is, as you’ve probably thought, is that once you get a pretty convincing diagnosis of MAV, something else compelling comes along!
I found these articles
http://jama.ama-assn.org/content/295/19/2286.full
http://www.neurology.org/content/55/12/1895.abstract
http://www.medscape.com/viewarticle/405624_5
http://www.mdconsult.com/das/article/body/285595653-2/jorg=clinics&source=&sp=11446343&sid=0/N/186022/1.html?issn=
Reading this gave me chills, because it explains some of my symptoms.
Wet ears- I have told the docs that since the beginning, that when I am feeling worse, it feels like my ears are wet on the inside. Could that be csf?
Pituitary- I mentioned that my MRI scan showed an enlargement of my Pituitary- Maybe it will get better once the leak is gone. The enlarged pituitary stalk can cause pressure on the optic nerve and issues with hearing and therefore balance. it shows that it can mimic a pituitary tumor. I am due for a re-scan in December due to possible pituitary tumor, due to slight enlargement on my MRI that was missed by all docs except Dr. Gray.
Many of the other symptoms, just as cognitive problems, positional headaches, nausea, photophobia, visual perception problems, are all described.
I wonder- does everyone diagnosed with MAV have csf leak? Or is it the other way around that csf leak is often diagnosed as MAV?
One More article.
http://www.tchain.com/otoneurology/disorders/central/csf-leak.html
Interestingly, Dr. Hain from Chicago, has been on to this overlap of csf leaks and imbalance sine he posted some information back in 2002.
I wanted to give everyone an update from my appt. At Duke today. After my blood patch last month, and two weeks of feeling good, I began to feel worse and pretty much back to square one, and in some ways worse. I came back for a synthetic blood patch (Fibrin glue, brand name Tisseel). After talking with Dr. gray before the patch, she said she wanted to take another pressure reading to make sure I wasnt too high. Turns out I was low again, so she added some synthetic csf, and right away I could see more clearly, and my headache faded over the next 5minutes.
Next we went ahead with the Tisseel patch. The good news was that they had a new formula of Tisseel that would make it easier to apply, and it would spread better providing a more thorough patch. They did 2 patches on my neck which had been previously identified on the myleogram last month. I was not as drugged this time, so I could hear the excitement about how well this new Tiseel was spreading, like they described. they also patched the lumbar puncture in my lower back where they took the pressure reading. I got a lot of extra pokes, I think 8 in all, not exactly sure why, but I think there was a young student practicing on at least one of then pokes…
THE GOOD NEWS…I feel great!!! I feel mentally like myself! It is so great to feel like this. It makes me realize how I have not been anywhere close to myself. I just hope my pressure stays up!.. I have instructions for no lifting or upper body work like vacuum, raking, etc. For a month. Tomorrow I fly back home. I have more pain this time from all the pokes, but I can’t complain.
I can’t even begin to say enough about Dr. Gray and the entire staff at Duke! They are all great!
I will keep everyone posted about how things go. Please forgive the typing errors, I am terrible on my iPad keyboard.
inafog,
That is great that you are feeling so well.Thanks so much for sharing this with everyone.Sounds like you are one of the pioneer patients with this.That you could hear them getting excited about the new patch working better sounds like they are really working on improving their technique,I hope that this works for you and for them.
Have been following Wendy’s blog she has not been doing well at all,but I think it turned out that her pressure had switched around and she kept getting leaks.I hope they can use this new prochedure on her as well.
That’s great that you can’t vacum for a month! 
Unless there is no one else to do it. Make sure that you follow their advice on not lifting etc.
I wish you continued good luck and thanks again for sharing!
This is great news that you are feeling so well. I will have to look back through this thread, but is there a reason you think you got this leak? I’m very happy to hear you are feeling better, my biggest symptom has always been being in a fog, even now when I’m not on meds, I feel very floaty and surreal.
Hi everyone,
I live in NC and I have an appt. with Dr. Kalie this Tues, the 25th. I just read this tread so you can imagine how excited I am! All my vertigo/headaches started about 6 months after I had my 2nd child. I had a spinal when he was born and I’m really wondering if this is somehow connected. I had the worst headache of my life about 4 days after he was born but none of my Dr’s seemed too concerned. I’ll let you’ll know how the visit goes next week!
Elisha