Muppo (Carrie-Leigh) and Rockergrl (Christine) - Thank you!

Specific Illnesses & Conditions VM/MAV
1

Carrie-Leigh and Christine,

I woke up to your extremely kind posts to me. I wish I was feeling better and could better put into words how much your posts have meant to me. In fact, my parents spend the weekends with us (our nanny isn’t here on the weekends and they help my husband with the boys - they live 2+ hrs away), and I read your posts to them and my husband. we were all so very touched by your immense kindness and understanding.

Carrie-Leigh - I keep on rereading the part where you said that I am an inspiration. I always feel like I’m the antithesis of inspiration, as I did not get well after so many years. So, to read that, was truly heartwarming. I appreciate your thoughts on the neurontin, and will speak more to that below. I am thrilled to have heard of your progress

christine - What you wrote about me being strong to take care of the boys even with help, truly resonated with me. Lately, I don’t even feel like a mom, as I’m not very present :frowning: so, thank you for those words. I h ope so much that you get well soon!

Update: After more diagnostic testing yesterday (went to a local doctor - who was actually trained by Dr. Gray) who did a spinal tap, checked my pressure, and added fluid, it has become more apparent that CSF issues aren’t the cause to my issues. I won’t go into much more detail then to say that it confirmed that it’s time to move on and try migraine meds again. I would be feeling less hopeless, if it wasn’t for so many failed medication trials,and how many years I have been this ill. But, I am certainly more scared of living like this than trying another medication. Carrie - Leigh - I can definitely relate to everything you wrote about the activity in your brain. I usually call this spinning in my head. I like the fact that Neurontin is a quick trial. I am so very sick and I know there is no magic pill, but I would like to see as quickly as possible if a med is going to work or not. I also am in dire need of relief. not only physically, but my hopelessness and depression are increasing with every passing day. Every day I say I cannot take anymore torture, but I don’t have another choice,. I do know that the main side effect of neurontin is dizziness, which concerns me, but my husband assures me that is temporary. I will have to discuss all with my neurologist.

Today has been such a heartbreaking day. my nanny or family usually bring my baby to me for daytime feedings, but today, I could only feed him for 2 minutes. That spinning feeling in my head was much too intense. When feeding him, I am always suffering but wasn’t even possible to feed him today. On a brighter note, since the CSF treatment didn’t work, etc., I can now hold my baby again. I don’t have to worry about breaking the patches, so I lifted my son for the first time. It wasn’t easy, but it brought tears (good tears) to my eyes.

i hope one day I could write something more positive, but in the meantime, your support means the world to me.

Lisa

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Hey Lisa,
I was wondering how you where doing and how the spinal tap went. I’m sorry it’s been so hard, I really, really am. You know I understand! I bet it is kind of a relief that the spinal tap showed that you don’t have a CSF issue so you can put closure to that issue and really be aggressive treating MAV. That’s kind of where I am too. Now that I’ve been all over the universe trying to find something other than MAV I can now rest knowing that I do have MAV and it can be treated.
I’ve been thinking about you and I’m so glad you have such support!
:slight_smile: Elisha

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Thanks, Elisha. Thinking of you as well. Let
Me know how you’re when you can.

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I saw a quote today on a church billboard that said “When life gets trying, don’t stop trying”. I found it to be so inspiring and it made me think of all of us. You know I like these inspiration quotes and I had to share :slight_smile:

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Hey Lisa,

You really ARE an inspiration and have amazing strength in my opinion. It staggers me to think that someone as sick as you are (and we on mvertigo know what that’s like) managed to have two pregnancies and give birth not once but twice! That takes guts and determination. I hope you have enough left in the tank to persevere with the quest to find something that brings you relief.

Thinking of you and sending good vibes across the ocean…(sorry, I’m in Bali, that’s how people talk here :slight_smile: )

Vic

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Thanks you so very much, vic! Hope you’re doing a little bit better

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Hi Lisa,
Thanks for updating us and it is good to put some closure to the CSF idea. I am so sorry it wasn’t the cure for you, but at least maybe it can give you more resolve to move on to the meds. As you know I am still considering making the long trip to DUKE (less and less so now), but I was wondering if you had local docs that do this too? Maybe Dr. Gray could recommend someone in my area? Is that how you had someone else with her skill near you? Did this doc in your area agree with Dr. Gray’s hypothesis of CSF issues causing MAV? Did you find any other doctor that agrees with this? My local docs don’t really understand how this could be the case so I was wondering if other than docs at DUKE anyone else feels this is a good theory??? The trip will be half the battle for me and if I can get evaluated in my area that would be so much better. I wish you so much luck and will say lots of prayers that the next med you try will be the one. You and your family deserve this…

And Elisha, I love that quote you posted! Thanks.

Christine

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The doctor I saw was at a hospital affilitated with YALE. He doesn’t do what Dr. Gray does. He did his fellowship with Dr. Gray at duke I believe. However, he currently doesn’t do any blood patches. He knows how, from his training, but that is not his current role, and he said at his hospital he would never be alloted the time to do such a long procedure. He does do lumbar punctures, and that’s basically all he did and add some CSF fluid that dr. Gray sent. My husband works with a doctor closeby who does blood patches. but, just a general one. Dr. Gray does these localized blood patches. I think there are pros and cons to the localized blood patch. I think I gave you my email. Email me anytime if I could be of any help with your decision. It is such a tough one. where do you live? I did pin Dr. Gray down and she admitted that she does see pts with dizziness AND headaches, but she did admit that I am an anomaly, as far as the extent of the rocking I experience. Honestly, when I first went I got picture from Dr. Kaylie that they see tons of pts just like me, but am not so sure of that anymore. I hope you at least figure out what your next step should be. good luck.

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Lisa

Thank you for your beautiful message. I say again, you ARE an inspiration! There are not many people on this board that are as sick as you and then take on TWO pregnancies!! You clearly have some deep fight in you. Hold onto that fight.

Does my memory serve me right in that you are a doctor? And what does your husband do? I think he is medicine as well?

I also wonder and your trials of the Benzos when you say they didnt work. When I was at my worst and I was just using Valium alone, it barely scrapped the surface for me. There was no way that drug was going to be able to fight MAV by itself and I’m wondering if it’s the same for you and becaue your symptoms are 1000x, they just cant tackle it solo.

I only noticed the Valium’s kick AFTER I got the Nori into my system and up there in the numbers (like 30mgs I think).

I’m thinking whatever med you decide to use next, use Valium alongside it as a support aid.

Failing that, I will come to America to lie next to you and keep you company for as long as you need.
x

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Muppo,

Thanks again for kind words and advice regarding the benzos. Wish we did live closer :frowning:

I have tried valium, ativan, and klonopin with zero relief in symptoms. I should mention, though, that I am only able to take before bedtime as sedates me even more than my usual. Maybe you’re right in that you need to be a little bit better before seeing success with the benzos. I’m not sure. When I first got ill, I was extremely sick, but not as awful as subsequent years and I took valium at bedtime and didn’t help.

I’m not a medical doctor. I do have my doctorate in clinical psychology. My husband is a neurosurgeon.

thanks again for all your encouragement and kindness. means more than I can say

Lisa

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Hi Lisa,
Wow, must be nice to have a husband as a doctor. So much of the things my docs tell me is quite confusing and hard to understand at times. Thank you so much for filling me in about a local doctor. After much more thought and another discussion with my doctor, I am not going to DUKE. He really thinks my rocking is Mdds and the other symptoms may or may not be MAV. When I read about Mdds and have read other’s stories, I do relate a lot with how they describe the rocking sensation. And it turns out that so many of them also have other symptoms that we all complain about on this forum. I feel very sad about this diagnosis and have spent a lot of time crying to be honest. Of course this only makes my symptoms worse!

I was wondering if anyone ever told you about this diagnosis? I was also wondering what is your next med? I suppose I will still try meds to try to help the symptoms that can be helped if I do have Mav too. I have tried all the major meds and then some so I am not sure what to do next. I am seeing my doctor again in another few months.

I am so very sorry the CSF procedures didn’t work for you and I thank you so very very much for all your help and information in my decsion to not pursue this treatment. I feel okay about this, but sad too as I was hoping this would be my cure.

Christine

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After much thought and discussion with my neurologist, and Muppo’s advice, I decided to trial neurontin. I started it last night at just 100mg (I am EXTREMELY med sensitive). I worry that this might not be the correct decision as it’s not a “TOP” MAV med, but I’ve tried so many of the “TOP” meds and they did not work. I wanted to start the next treatment ASAP as I cannot bare to live like this anymore. I honestly have zero hope, but I guess maybe I have .0000001% hope that something will work as I wouldn’t even try otherwise. The thought of living like this is much scarier than trialing any medication. I know some docs also think this isn’t a potent drug, but maybe potent isn’t what I need. I just need the right drug for me. and, just because it’s not potent for migraine headaches, doesn’t mean it’s not potent for MAV symptoms, I’m trying to remind myself. I went back and forth about trying this or topamax. AFter the whole diamox fiasco I am so scared of taking another drug that affects CSF, although I know Topamax has a much weaker affect on CSF than diamox, I believe. I also do have kidney stones so topamax has always been lower on my list. I have spent probably 80% of the week crying. Being this ill, just isn’t livable. It is so awful. I desperately need this medication to work.

Muppo - did the neurontin help with the rocking as well or electrical activity ( I call it spinning) in your head? if it wasn’t for nortriptyline, do you think it might have helped alone? I guess there’s no way of knowing for sure

Rockergrl - thanks. I am very lucky for my husband, as he is very supportive. But, him being a neurosurgeon, hasn’t cured me :frowning: I always say I wish there was some type of surgery he can do to cure me. like most of the docs out there, before all this, he never ever heard of MAV or any of this. He is learning about all this, just as us. That is a good question about Mdds. I wish I knew the answer. Every single doctor that has treated me and knew about these symptoms (I have been to a plethora of docs with no clue what to do with me) promise me that I do not have Mdds. they say that you must have preexisting boat ride, etc. I explain to them that researchers are finding that mdds can be spontaneous and they say it is just “MAV.” That being said, I ask my husband night after night, do I have mdds. most days I am hysterically telling him, “I have mdds and am never getting better.” I am scared to death that I might have it, and so terrified as I think prognosis of Mdds isn’t very good. But, again and again, the docs promise me that I do not have it. I also know people with rocking (Muppo included) that got better on meds. I’m so scared too, Rockergrl. I empathize deeply. I also read a lot of your posts, and I saw that you wrote that several meds made you worse and couldn’t get on with the trial, and docs said it is therefore not the correct med for you. I cannot speak for other meds, but I know with nortriptyline that can happen. When I increased dose or started it, I was MUCH dizzier for 7-10 days, and then it let up to my baseline again. For me, this med didn’t work. However, I’ve been in touch with a lovely lady for years and years, who got her life back on nortriptyline. she was very sick, and she got much worse (dizzier) on this med for first 7-10 days or so and then reached baseline and over time got better and better. I just say this, as I don 't want you to think meds do not work until you reach a therapeutic dose. Through the years, I have meds I couldn’t reach a therapeutic dose. However, I cannot say they didn’t work; therefore, I don’t have MAV. Sadly, in my case, though, I have trialed many meds to therapeutic doses without any improvment. Am I making any sense? hope so. sitting up at computer is so dreadful, so trying to type very quickly. hope it’s ok I am writing this. I just do not want you to lose all hope. without hope, there is nothing. and, this is coming from someone with .0000000001% of hope. I feel for you immensely. I want us all to get well! try to hang in, and I’ll try too!

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Hi there Lisa

I wish I had something more helpful to say but I couldn’t read your post and not say how once again I hope beyond hope that neurontin will work for you. I agree with your thinking that sometimes what we think will be the answer isn’t and what we think won’t be, is. I’m a bit like that - my body responds almost diametrically the opposite to what is expected. It’s always been like that with me, so who knows that against the odds neurontin will work for you?

And your post read just fine, despite your struggling to do it. I’m sure we all love to hear from you and how you’re doing. I know I do and I appreciate you making the effort knowing how difficult typing is. Lots of love to you, I said a little prayer for you in church on Sunday - not sure what I make of all that side of things right now - but I just wanted to do SOMETHING for you and it just felt right.

Anyway Lisa, you’re often in my thoughts and if I had a wand now I’d wave it and make that neurontin do the job!! Here’s hoping! :smiley:

Brenda

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Brenda,

Your message touched me beyond words. Thank you!

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Muppo - did the neurontin help with the rocking as well or electrical activity ( I call it spinning) in your head? if it wasn’t for nortriptyline, do you think it might have helped alone? I guess there’s no way of knowing for sure

My dear Lisa

I’m so proud of you for taking the next drug step. Everyone on this board will support you 100% and be there morning, noon and night to give you strength.

Re your question above. I believe that even if I had started the GabaP before the Nori, it would’ve dulled down dramatically the electricity in my brain, but also, whatever Nori has done for me, I’ve needed as well.

Please, please, please do not fall at the first hurdle if things start to spaz out on the GabaP. The great thing about this drug is you have a wealth of mgs to play with and can go up to something like 3400mgs!!!

Start with 100mgs for the first 5 - 7 days as your morning dose. Then take your 2nd tab at lunchtime for a few days and your third a few days after that before bed. Stay at the 900mg for a couple of weeks and then start to go up more and more by doubling your doses or spacing them out every couple of hours. If you start to notice some calming over the next 2 - 3 weeks, add in a good dose of Valium to help smooth the way. I believe in my heart that the benzos havent worked for you because your MAV is like a raging bull and they are no match on their own. BUT, will hopefully be a good ally to the GabaP.

Lisa, you can do this. I know it. Remember there can be no fear of a drug that is greater than the fear of MAV.

I believe in you. x

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Hi Lisa,
I am so glad your docs reassured you about Mdds. I wish my docs reassured me too. Since one of my docs is near UCLA, maybe he thinks more about it becuase of the research done there on Mdds. Who knows. But I do think it is so great you started neurontin. That is another med I am now considering, along with Cymbalta, to discuss with my doc at the next appointment. Sometimes he is open to suggestions, other times he is not. So I am glad I have another drug to present to him.
Please hold on to hope and please keep us posted with how you are doing!
We are all pulling for you and I hope this is the one!!
Christine

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MAVLisa,

I don’t have a whole lot to say, except that I want you to know that I think about you often, and I hope and pray that you can find your answer and feel better very soon. While I have often felt like I’m in my own little hell over these past few years, I know that it hardly compares to what you’ve been experiencing, and I am simply amazed by your strength. I was so scared to go through treatments and get pregnant and have my MAV get worse. Your story and your strength convinced me that I could get through it no matter what, and now I have a baby sleeping in his crib upstairs. I wholeheartedly agree with everyone else, that you truly are an inspiration. Please keep us updated on how things are going for you.

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thank you, everyone.

Cassada - your message touched me so very much! thank you. how old is your baby? boy or girl? I was following your story as well and glad that your pregnancy was such a success! you are very strong yourself.

Took Neurontin, so far, two nights, and my fatigue (which is such an understatement for what I experience) is worse and spinning in my head is getting worse and worse by the day. It would be unfair if I blamed the increased dizziness on Neurontin as things were worsening each day , beforehand. but, do think it is making spinning in head even worse. Only way I could describe this dreadful feeling is spinning in the head. it is an unreal, torturous feeling, and as dreadful and immensely debilitating the rocking is, this feeling is even more torturous (never ever thought anything can be worse than the rocking). I am never scared of the symptoms. I am just scared to death that I will never get well. I honestly don’t know how much more of this I can take. needless to say, I’ve been crying nearly all day. again I will say that I desperately need my life, a LIFE, back!

Muppo - My neuro, knowing how very sensitive I am recommends 100mg at night for 2 weeks, then 200mg at night, then 300 at night, at which time I’ll start daytime doses. I, unfortunately, cannot go as quickly as you or most people. Something is very messed up with me, as I cannot handle these drugs. I hope I can make these increases every 1 week, instead of 2. I know that all drugs list dizziness as a side effect. However, my husband prescribes this drug frequently and dizziness is a very common side effect, even for people without MAV, for neurontin. I also wouldn’t be able to take a benzo during day, as it sedates me very much. I wish I wasn’t so med sensitive.Guess it comes with the territory. Did the neurontin decrease the rocking further than the nortriptyline did?

Again, thanks for everyone’s kindness. I will be in touch.

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Hi Lisa,
I can relate so much to what you said with your neurontin med trial. Every drug I took, and I mean everyone, inreased my head symptoms so drastically, without decreasing the rocking and that is why I stopped taking them after some time. And yes, the rocking for me is horrible, but having increased head symptoms on top of that was just not tolerable for me. It’s like I felt the meds were screwing up my brain chemistry even more, if that makes any sense. This is my confusion with taking anymore meds and why I thought to go to Duke.

I really hope so much that this med turns around for you and it stops increasing your head stuff and will start to decrease everything. I am saying prayers for you.

Keep us posted Lisa and do your best to keep your chin up. It seems others have gotten better and we have to hold on to that hope.

Christine

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— Begin quote from “MAVLisa”

Muppo - My neuro, knowing how very sensitive I am recommends 100mg at night for 2 weeks, then 200mg at night, then 300 at night, at which time I’ll start daytime doses. I, unfortunately, cannot go as quickly as you or most people. Something is very messed up with me, as I cannot handle these drugs. I hope I can make these increases every 1 week, instead of 2. I know that all drugs list dizziness as a side effect. However, my husband prescribes this drug frequently and dizziness is a very common side effect, even for people without MAV, for neurontin. I also wouldn’t be able to take a benzo during day, as it sedates me very much. I wish I wasn’t so med sensitive.Guess it comes with the territory. Did the neurontin decrease the rocking further than the nortriptyline did?

— End quote

Hello my friend

The Neurontin did decrease the rocking further once I was on board with it. I agree with your Neuro’s suggestion on how to tackle your drug regime and do it at night. Sorry, I should have remembered you are way more sensitive than most of us here.

Lisa you know in your heart that your brain is going to FREAK when you throw a new med at it. Fact. Your brain (I’m convinced) is doing what mine was but on an extreme scale.

Regarding the benzo… so what if it makes you sedated throughout the day? You have help at home so you have to set everything else in your life aside and concentrate on you. As you are currently taking the Neurontin at night, I would follow it straight down with a good dose of Valium or Klonopin to try and ease you into it and help you get to sleep.

I remember saying to my aunty ‘I’m living in hell’ and she said ‘well then, the only way from here is up!’ and I try to hold onto that!

Rest easy x