DUKE update

I first want to thank so many of you for writing me such kind messages.

It, unfortunately, comes with tremendous sadness that I write this update. It is actually very hard for me to write this, but I really wanted to share with those of you who showed such concern.

Will try to write a summary on a very difficult week at DUKE. Last Tuesday, I met with Dr. Gray (who is a very kind doctor), and she did the spinal tap and checked my pressure which was 10. She said this is at the low end up normal. She proceeded to add CSF,and then had me walk around and see how I was feeling. It seemed that for the first time in years, the floor felt flatter. the Rocking seemed to be significantly improved. Looking back, I am questioning that better feeling, as I am in a horrific place now. I am not one to have a placebo effect. I’ve been through a million treatments through the years, and never felt better. I did only walk around for a few minutes, and maybe I so desperately wanted to feel better that I felt it. I’m really not sure. She then did a CT myelogram and found probable source of leaks (5 diverticula). I apologize for not explaining all that well - this is all new terminology to me. She ended up patching these 5 spots, as well as the original spinal site. The procedure was definitely painful, but I lied on the table so hopeful that I could care less about the pain. I then sat up and felt incredibly lightheaded. Apparently, the dye they use in the myelogram can increase pressure as well as now my leaks were supposedly patched up, so some get rebound high pressure.

Next day, felt teeny bit better (not as well as after added fluid), but very off, and a headache started to kick in. She gave me diamox to take as a prevention in case I had rebound high pressure. I took 1/4 what she recommended as I know how sensitive I am. By thursday, the headache progressed to the worst imaginable pain Excruciating isn’t even the word. I assumed I had high pressure, continued with the diamox, and landed in the hospital on Friday with negative pressure!! I was so sensitive to the diamox that this is what happened. so, then she added fluid, head pain got somewhat better but not perfect. Next day flew home with excruciating pain (although not as bad as friday). Perhaps, from adding fluid I am now high pressure, but I am not taking diamox again and hoping body will regulate.

since home, my “MAV” symptoms are at their worst. Part of me wishes so much that I never put my body through this, and part of me is remembering that I had that moment of feeling a little better, and am questioning that now. In addition, when have blood patches was told not to lift anything heavier than galloon milk for 6 weeks, which means not even being able to hold my baby which is heartbreaking. I do have help because of how ill I am, but holding him is truly one of the only things that gets me through.

I have no idea where to go from here. I was initially going to try topamax, but now since I supposedly have this pressure issue, would that only make me worse. I actually started topa a week before I decided to go to DUKE (stopped because they didn’t want results confounded), and sicker from it. Is that because It was lowering my already low pressure, or just normal initial side effects. I feel so lost, and so very depresssed. These symptoms are beyond torturous and after nearly 5 years I truly don’t know how much more I could take. I would never ever take my life (no worries), but the thought of living tortured just seems so unlivable. I just cannot believe any of this. I was 100% healthy before this awful illness struck. A full, happy life ahead of me (so I thought).

I wish I had better news, and I thank everyone for your concern. I hope so much that we all beat this illness and soon! I am now thinking that I am just a person with pressure on lower side with diverticula (still learning what that is), and this is completely unrelated to MAV symptoms, and have to revisit MAV meds. I just don’t have it in me right now, though, to try new treatments. I will have to, though. I will give this another week and see where I’m at.

So very sorry to hear that you are suffering…physically and emotionally. I hear the desperation in your post , rightly so after having the hope of a possible cure, or at least relief that allows you to live life more comfortably. This disease is so frustrating and sucks the life right out of you! I’m sick of it and I’ve had it for only 10+ months. I will keep you in my thoughts and prayers.

I am still hopeful for you that your pressure will stabilize without the Diamox and you will have more moments of feeling the clarity of your old self. I am still trying to figure out how to regulate with tiny doses of the Diamox… Unfortunately, people who have the lower pressure have no drugs to try. There is no medical reason for a drug to have been developed to increase ICP… If you are feeling worse from the patches, then high pressure rebound, which is pretty much a given side effect of the patch procedure is still a likely explanation. (fingers crossed, heart crossed, etc)

Did Dr. G answer the question for you if your body could get rid of high pressure without Diamox? I sure hope so, as that could help my situation as well, as you know I still am having a bit of high pressure after back-to-back patches earlier this month.

Hoping the best for you, and sorry that you are suffering through all of this for so long.

Thank you so very much for updating us. I am so sorry and imagine this post was terribly difficult to write. I too am seriously considering going to Duke for this procedure and I think you are incredibly courageous to have even tried. Is Dr. Gray still hopeful that you might gain some benefit in time? Will you go back to Duke for another treatment or test your pressure in any other way?
My thoughts are with you and your family.

Lisa,
That brief relief of symptoms you had when she added the fluid, as you know, I had that too. And then it never came back. I have thought about it a million times, questioning if I really felt it or really wanted to feel it. Maybe we really did feel it and it’s just going to take time for the CSF to replenish to get back up to that level. I know you are having such a hard time, and I’ve been talking to you a lot but reading your post just made me think. Seriously, maybe your CSF just needs time to really get up there!

I agree about not taking the Topamax. I’m pretty sure that Cymbalta actually increases intracranial pressure…you may want to look into that.

Also, I never asked you if your vertigo got worse when your headache was so bad? My vertigo never changed when I had the post fluid reduction/addition headache which made me think the vertigo was not related. If your’s did then maybe they were related!

Oh my, what a horrible story. I hope that you don’t feel bad about what you did, because you were only trying to fix this problem, you had the best of intentions. We all do different things to knock this condition out. I tried Chinese medicine in Taiwan, eating 5 scoops of dry powder before every meal (disgusting). You just took a wrong turn here, tell yourself that, and I agree you should revisit MAV medicines. Wishing you well.

Well put Longshort… We all do feel desperate at times and do things to try to make ourselves feel better. I have been to Johns Hopkins, Mayo Clinic and Duke and all have had different diagnosis and opinion ions. We endure a myriad of tests which can be painful or scary and we take medications which may have harmful side effects. But then, we pick ourselves up again, rest and move forward. We cry and we laugh. We look to the success of others and hope that we will be there someday. Lisa, your story literally brought me to tears. I feel your pain. I had a misdiagnosis from Johns Hopkins of MS for ten years and was treated as an MS patient. That diagnosis was in 1999 , so this has been going on for 13 years. The diagnosis was changed to MAV in 2011 and it’s been a roller coaster since then ( literally and figuratively).

Lisa, your precious boys and your husband will give you the strength to keep going. I know that’s what helped me. A supportive husband, help at home and a loving son. Use that love to give you strength to continue to figure out what will work for you. I know it’s out there. We just all have to find it. It’s different for us all too…

Right now, rest, recover and give yourself some time. You tried it. You will try something else. And we will all be here to continue to share our tears and our triumphs. Take care my friend… Dee

Dear Lisa,

I had read your post, with so much sympathy. My baby girl was 14 month when this started, and my biggest sorrow in all of this is how much I lost in my relation to her. I send you all me thought, and wish for the best for you.

Best from Line

Oh Lisa, I was so sad to read your post. Was hoping against hope it would have been the answer for you, having followed your story on this forum from before you had your first little son. Had you never been to Duke you would have always wondered if it held the remedy for you, at least this way you won’t be for ever wondering “What if…?” You gave it your best shot.

With all my heart I hope somehow, from somewhere, you will receive another shot of hope that will have a happier ending. Wish I could offer more practical advice but know we are all rooting for you. Thanks for taking the time and trouble to update us.

Brenda

PS. Thank you for taking the time to letting us know.

Hi Lisa,

Just want to say so sorry you are feeling this way. Don’t beat yourself up that you’ve tried this and it’s made you feel worse. I’m sure the worsened symptoms from the procedure won’t last. I remember trying a drug that I was wary of but was hoping to stop the relapses I still get. It made me so much worse and I thought - oh no, what have I done? I went back to my baseline, it took a little while, but the worsening of symptoms didn’t stay with me.

I think you need to persevere with the drugs, it’s hard, I know, but the answer could be round the corner.

H

Thank you for all the kind, concerned, and wise comments. I truly appreciate them so very much.

Elisha - I believe my rocking did worsen as the head pain intensified. however, by the end (when had to be rushed to hospital), I couldn’t even move at all anymore because of severity of pain.

Rockergrl- Dr. Gray wants me to wait and see. She didn’t have too much input. She mentioned it might be worth doing a cardiac workup and will speak to cardiologist colleagues. I feel strongly that nothing is wrong in that arena. It struck me that they deal much more with the head pain aspect of this than “MAV” symptoms. However, was first told that they did a study with +50 subjects with similar symptoms. If I don’t see any improvement, I don’t think I’ll be going back.

Thanks again so very much. wishing everyone the best as well.

Lisa,

I am praying for you. I feel so bad for you. Just hold on because I do believe our bodies can change for the better and heal with time. I know that hopeless feeling. Just focus on the love of your children and husband, it will make you stronger. I wish there was some way I could wave a magic wand and cure you. I held onto hope in my darkest days. My husband bought me a plaque with a cross on it that says “Believe when it’s beyond reason to believe.” in my darkest days I clung to that. I still look at it whenever I feel hopeless during flareups. You are in my thoughts.

Nance

Hi Lisa,

I’m so sorry to hear of all that drama at Duke. I wonder if there really is anything in this CSF story? I don’t know what to make of it.

I hope things settle down and even better, by some miracle, the work they did eventually pulls you up a level or two towards feeling more normal.

Take care … Scott

I still am hoping and praying your pressure will stabilize and you will feel as well as you did after the LP.

I know many are confused by the CSF issue, and if you have not seen the other postings about it, I will try to summarize the theory. I think the way to look at it is to see csf pressure as a potential trigger for MAV symptoms, and it appears to be a fairly common trigger. (For example if you drink coffee or red wine, it increases your csf pressure)

The initial theory for treating MAV by treating csf pressure came about through a study where resolving csf pressure problems also resolved migraines. You might remember the study which will be presented in April at the Neurotology conference in San Diego by Dr. Kaylie, Duke. The results are highly promising, but the study is focused on relieving head pain, because it is a more easily measured (although self reported) symptom.

Obviously, in his practice, Dr. Kaylie had many patients who were diagnosed with MAV or Menieres, and had no headaches, but they were still able to get amazing results using the csf strategy. There were a few patients whose hearing came back while on the CT scanner. Dr. Gray is considered an expert in the area of patching csf leaks, she is an interventional neuro radiologist. She is a very caring doctor, and people in her specific profession have entrepreneurial personalities, they are creative in their approach and have elevated medicine in many ways through using non-surgical approaches to solving patients problems. Her only drive is to make people better, she is very low key, and is not out there publishing hundreds of papers, instead she is on the phone following up with patients. Most of the patients who see her have very complicated spinal issues, and they travel from far and wide.

I think the best results have been seen by MAV patients who present with higher CSF pressure. She can take off fluid, and then treat with drugs to keep the pressure down. Low pressure is a different animal, and in MAVers, if low is the issue, it is likely a slow leak that is hard to find even with Myleogram. (Fast leaks are more obvious to diagnose and treat) Dr. Gray is actually known to be very good at spotting the probable leak sites by looking at the myleograms.

The issue that I had with taking the MAV drugs is they made me worse. In reading stories about others who had csf issues, I thought it was my best shot (no surgery, no medicines I can’t tolerate) and it is the only thing that has relieved my symptoms, and I was similar in Symptoms to those had been treated for csf issues.

In any case, I am not trying to be a rebel here. I know you all understand the desperation after months and even years of suffering, and when all the meds make it worse, I think looking for a new path makes sense.

I am still hopeful Lisa that your pressure will regulate on its own. After talking to Dr. Gray today, I am going to do small Diamox doses (1/4 every other day at night) to try to regulate mine, it makes sense for me, and I will keep you posted how it goes. I read on the csf facebook page that people have taken the Diamox to regulate anywhere from 10 days to a couple months until the pressure stabilized. I will put a post out there to ask about that specifically, and see what others have encountered as far as the rebound high.

I am so sorry Lisa! I was hoping to get to Duke as I’ve had an epidural and a spinal tap and 2 days later- I’m in this horrible mess and am not sure what to think at this moment. I guess I’ve had this horror story in my mind with that happening and with it happening to you and to Ellisha really freaks me out. Not to mention to get on a plane and fly across the country makes it a lot more complicated. Please don’t be upset with yourself and you will get better! Stay positive!

As guinea pig number one of the Duke study, I think a clarification is needed. Us patients all had DIZZINESS and headaches. I am still being treated by the team trying to get me better. I had a lumbar shunt installed Nov. 1st last year. My lp’s opening pressures had been between 22 & 24. Now my op’s have been 13 - 15. May need another valve adjustment to lower it more.
Currently on Diamox, Amitriptyline,and furosemide. My frequency of having auras has increased for some reason, but headaches and disequilibrium are better than they have been since I got sick 4+ years ago. Still get brain fog bad after driving 100 miles, no symptoms if I keep my head still. Dizziness, cognitive issues, vision all worse when I move my head or my surroundings move (as in being driver or passenger).
Wondering if I should follow the “rules” for MAV?