It has been a while since I’ve hung around the forum. It has been a very busy summer for me. My family moved into our dream home and my 16-year-old daughter and I went on a two-week trip to Europe. It is amazing to me that I’ve been able to do these things and find happiness again. Last summer, I was contemplating a leave of absence from my job and career because I was struggling so much with MAV. My family life was suffering, and I was depressed. Now, I am “alive” and well! I feel like a school girl full of energy and giddiness much of the time!
I wanted to come back and share my recovery with you all to give you hope for yourselves. I am not cured of MAV. I do have lingering symptoms, but they are manageable and I am living at 90-98% of normal most days. As we all have learned, what works for one of us may or may not work for another. However, I believe it is possible my combination of lifestyle changes and medications could work for one or more of you, so I will share them here. Each plays an important role and is only a single piece of the puzzle for me.
My personal recipe for recovery:
100 mg. Zoloft
100 mg. Zonegran
Low-carbohydrate diet
Eat meals and snacks at regular intervals
7-8 hours of sleep each night
Making myself continue to participate in life while also allowing for rest breaks
**A very important note: ** Before finding the Zoloft and Zonegran combination, I had found some success with the low-carb diet and other lifestyle changes. I was able to live at about 75-80% of normal on average without the meds. After I started the meds, life got hectic and I became lax on the diet, so the meds sort of took the place of the diet and were keeping me at 75-80% while I ate whatever I wanted. I finally decided to kick it in gear and combine the diet and the meds and now I feel wonderful! LESSON LEARNED: It is important to use medication as a supplement to lifestyle changes, not in place of them!
To be honest, I’ve been hesitant to post in the Success Stories thread for fear the ugly MAV monster will rear its ugly head again. But, I’m going to go for it soon, because after living through this healing process, I have the confidence now that I can handle whatever is thrown at me. I am thinking of all of you and hoping you find your own relief very, very soon! Feel free to ask questions. As you know from your own experiences, there is a lot of trial and error to finding what works for each individual.
So great to hear from you and know that you are feeling so well again. Big congrats. I figured that was the case and that you were away enjoying summer up there. Your recovery and observations certainly fall into line exactly as Steve Rauch has written. We really have to make the lifestyle changes and use the meds to “grow taller in the pool” as he said it.
So Zoloft definitely seems to help knock this out for a few here: you, Adam, and Howie. Have I missed anyone?
Have you experienced any side effects at all Marci?
Marci,
Thank you so much for taking the time out of your full, busy, and wonderful life to share with those of us still struggling daily. You are an inspiration and I wish you continued good health!
Warmest,
Lisa
Have you experienced any side effects at all Marci?
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Yeah, I find myself quite hyper and happy at times! I barely recognize myself! Oh wait, this is the old me, before MAV!
Seriously, I haven’t had any significant side effects with either med other than the cough I had with the Zonegran at 125 mg. When I first trialed Zonegran this past spring, I started at 25 mg. and slowly went up to 125 mg. I did have side effects at each level after 50 mg, but I was able to tolerate them until they subsided up until the cough. My doctor had me stop the med because of the cough, but I started it back up after the cough cleared because I realized it was helping with my daily mild to moderate headaches, fatigue, and IT ELIMINATED THE CONSTANT HEAD PRESSURE! I’ve kept it at 100 mg. for a few months now and the cough has not returned. I did not have side effects during the second titration to 100 mg.
Surprisingly, I haven’t had problems with the Zoloft. When I tried it many years ago for depression, it caused anxiety so I stopped it. This time, it is actually helping with anxiety. Maybe that is because the MAV had ramped up the anxiety for me, and when I took it last time, anxiety hadn’t really been a problem before starting the Zoloft. I do know from my past experience that I will not be able to stop this med cold-turkey or I’ll end up with severe vertigo. The Zoloft has helped me gain the rest of my energy back and has helped with the brain fog and false sense of motion symptoms. I do continue to have 24/7 visual snow, tinnitus, and minor visual shifting with differing levels of severity, but all are tolerable.
How are you Scott? Are you trialing any meds currently?
Marci,
Thank you so much for taking the time out of your full, busy, and wonderful life to share with those of us still struggling daily. You are an inspiration and I wish you continued good health!
Warmest,
Lisa
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Thank you, Lisa! I’ve noticed you’ve become a valued and wonderful addition to the forum. I’m sorry MAV has given you a reason to be here, but we’re glad to have you nonetheless. I hope you find wellness soon but continue to support the forum with your knowledge and positive attitude!
Marci, I have not chatted with you but I am so happy for you!! It’s nice to hear a success story. I think it gives each and everyone of us some hope that it can happen for us too. Congatulations and I wish you continued GOOD health.
I’m so pleased for you!! Well done. Its interesting that the path to wellness is so different for everyone, for example diet and lifestyle changes make such a huge difference for some people and not for others.
Marci - I forgot to ask, how did your doc decide to combine the zoloft and zonegram? I worry sometimes that finding the combo that works for me might take forever.
Marci - I forgot to ask, how did your doc decide to combine the zoloft and zonegram? I worry sometimes that finding the combo that works for me might take forever.
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Funny that you ask! My doctor didn’t decide this; I did. My instincts told me to give it a try. After coming off the Zonegran because of the cough, my fatigue, headaches, and head pressure returned so I wanted to give it another try. I first started a trial of Effexor, but it made me so tired I couldn’t stay awake at work, and I just didn’t feel right on it. There was a lot of discussion going on here about Zoloft, and a few people were having success with it. I had a bottle in my drawer that my GP prescribed last year. I hadn’t taken it because I was on a no drugs kick after my Topamax nightmare. I was starting to feel the pressure of the Europe trip, so I decided to go for it. Since I had taken Zoloft before (back in the 90s), I knew I wouldn’t have any side effects I couldn’t live with. I did the necessary research to make sure there wouldn’t be any conflicts between the Zoloft and Zonegran and went for it. JACKPOT!
DISCLAIMER: I don’t recommend others make decisions without their doctors. However, I have researched the heck out of this. I have tried every legitimate supplement recommended for migraine. I’ve done the migraine diet. I’ve read several books on migraine. I’ve been an active member of this forum. I’ve discussed medications in depth with two knowledgeable neurologists. Most importantly, I had taken both meds before at different times, so I knew how my body reacted to each of them individually, and I verified there wasn’t a danger in taking them together.
Marci - thanks for the note. I can definitely understand you taking matters into your own hands with this illness. I feel so well informed, as I feel like I live and breathe MAV everyday for 2 years. So, sometimes we do know best. I am so glad it worked for you.
Hi Marci,
Thanks for your kind words. I try my best to be hopeful, but even the most optimistic people on this forum can get that “beaten” out of us when we live with this condition on a 24/7 basis. It is so great of you to figure out a regimen that got your life back. I really think that our bodies tell us if a med is gonna work and if we really listen to our bodies instead of our doctors at times, it might help figure out the right med or combination of meds for this condition. Only our subjective experience is what is measured, unlike meds used to lower blood pressure, cholesterol, etc. Since we cannot see MAV via patient observation, a neurological exam, imaging exam, or a blood test, being in fine tune with our subtle (or not so subtle) internal experiences is the best we can do to finding our individual med regimens.
Once again, thank you for sharing and keep up the good work!
Best,
Lisa
Great to hear from you Marci. You are the second person to do extremely well with an SSRI/anticonvulsant cocktail that I am aware of. I’m not surprised by this but I am very happy about this :-).
I also want to note that the other parts of your program have been my mainstays since last year, and are largely responsible for keeping my trigger load down I believe). The sleep is key, the low carb diet is key (mainly low in grains, high starch carbs, and sugar in general which basically means low glycemic index, but I take it a little further), a nd so is eating at regular intervals. I find that just those 3 points will keep me from getting triggered most of the time. I make sure I get vitamin D in the form of sunlight or 10 minutes of tan every other day as I firmly believe that’s a potentially “missing link” there, but that’s just me. I am glad to see that these practices are also in use by someone else, and working equally as well Good to hear from you again and it was nice of you to stop in and let everyone know that you are doing well.
the low carb diet is key (mainly low in grains, high starch carbs, and sugar in general which basically means low glycemic index, but I take it a little further),
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Rich, could you possibly expand on this a little please - how do you take it a little further? Thanks.
It’s great to hear from you too! Yes, you and I both found the low-carb diet to be helpful. I found that it works by accident while trying to lose a few pounds over a year ago. I would say it is the number one most effective tool in my treatment plan. I tried a low glycemic index type diet, but it wasn’t as effective as a true low-carb diet such as Atkins where I stick primarily to eggs, meats, nuts, cheeses, and lots of non-starchy vegetables. I believe the reason low-carb works for me versus low-glycemic index is the addition of the diuretic effect that comes with a low-carb diet. After 2-3 days eating very low-carb (20 net grams of carbohydrates per day (total carb grams minus fiber grams)) and a 3-5 pound water weight loss, I feel MUCH better! I can’t really explain it. It just is what it is. Maybe less fluid retained in my body means less pressure in my head. I don’t know. :?: ). Anyway, anybody out there who is feeling desperate may want to give low-carb a try. If you are like me, you’ll know within a week or so if it is going to help or not, so it isn’t like a 3+ month elimination diet.
Marci, I’m really interested in giving low carb a go for a few days. Diet is my main tool too and as I’m going through a bad spell at present, if I can do anything to help speed up the rceovery process to where I was before, I’d like to do it.
I’ve read that anything less than 40grams of carbs a day will cause headaches but you obviously don’t find that. Would you mind if I ask exactly what carbs you eat a day, are they vegetable sources only? You eat no rice, oats, potatoes? What do you class as non starchy vegetables - greens only? Sorry for all the questions but your regime has really caught my attention and I’d like to follow it properly for a while to see if it helps. Many thanks.
I did not get headaches when I started low-carb, but I know some do. I think that may be more from giving up caffeine at the same time, as recommended by many of the low-carb diets. Some people do feel a bit tired and lethargic for the first few days as their bodies get used to not having the steady flow of sugar, but if you stick it out you actually feel better once you’re through the transition.
Yes, my carbs come mostly from vegetables sources with a few coming from eggs and cheese. I also eat almonds because they are not a trigger for me. I do not eat rice, oats, or potatoes. I’ve tried including them in my diet, but I did not get the same positive effect as when I left them out. I use the Atkins diet as my baseline. It may be easiest for you to just follow the first phase of the Atkins New Diet Revolution to see if it will help you: http://www.atkins.com/Program/FourPhases/WhatIsInduction/AcceptableFoodsList.aspx. If it improves your MAV symptoms, you can always experiment with adding other foods back in later. I’m not promoting Atkins as a diet. It is just the easiest to follow with the best MAV symptom relief for me personally.
Good luck! Feel free to ask me questions here, or PM me if you want.
the low carb diet is key (mainly low in grains, high starch carbs, and sugar in general which basically means low glycemic index, but I take it a little further),
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Rich, could you possibly expand on this a little please - how do you take it a little further? Thanks.
Brenda.
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Hi Brenda,
The main action of lowering your carbohydrate intake is that it lowers insulin levels. Insulin is a KILLER and causes HAVOC on virually every bodily system. When your insulin is low, you are less tired (sugar drains your energy faster than ANYTHING), your blood sugar is more stable (less headaches are reported by a lot of migrainours from this action alone), and there are a host of other health benefits including lower triglycerides, lower blood pressure, lower LDL, higher HDL, weight loss (if you need it. If you don’t need it. Just eat more of the lower carbohyrate foods to compensate for the calories, mainly proteins, fats, and non-starchy vegetables).
Agian, this is all a very personal choice but doing this has created a much better environment for kiling my MAV. Even on topamax, the diet helps more because when I am not as good, or on the road and my carbs are higher, I am triggered much easier so I know it works for me. Basically, the diet consists of any meat you want, any fat, any non-starchy vegatble (no or very little potatoes, corn, rice, pasta, breads, etc). Some people need SOME starch to feel right, so it depends on the individual. I need a little, so my starch comes in the form of sweet pototoes when i need it and sometimes a little bread. I hope that helps a bit.
Marci and Rich, thank you both so much for your replies. They have been so helpful. I’ve been thinking them over and I’m going to go for it! I’m worried how I might fare with no potatoes, oats or rice because I depend quite heavily on them but I want to know if like yourselves if I might be better MAVwise without them.
I think I might be one of those people like you say Rich who needs a certain amount of carbs to feel ok but we’ll see. I found the Atkins site you gave me the link to very helpful Marci. Especially the carb counter. Thanks.
I assume it’s ok to eat fruit if you take note of the carbs in it? I know some folk find fructose a problem but I never have done and in the audio link that Scott gave about diet a while back it was said that fructose doesn’t affect insulin. I understand it’s all a very individual thing so I guess the only way is to experiment and find out what suits me personally.
How are you Scott? Are you trialing any meds currently?
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Hey Marci,
Not good actually and just getting by. I gave Verapamil a go weeks back and stuck it out until I couldn’t handle it any more. Vertigo was off the charts and I felt pretty ill trying to get out of bed in the mornings. Driving became a real issue as was just sitting at my computer during the day here at work. I started having trouble remembering what I was doing here at work. I can’t have all of that craziness going on while working this job. I then gave Nori a second try (first time over a year ago) after reading about Rauch loving it so much. That proved to be disaster number 2 with all kinds of the usual horrendous-ness and feeling unable to work. After a few days washout I tried Paxil a second time (low dose) to see if I could titrate up slowly and avoid the gut problems. By last Monday I was jacked up through the ceiling on it AND had to interview two people for a job here plus observe a group presentation 60 km south (ie, highway driving). By Wednesday I felt like I was going to lose my mind on it. I stopped. I now have my sanity back again and am much more functional at work, however, I am now extremely dizzy in a way that I can handle it (with valium) and feel like the soul has been sucked out of me. Rather black and don’t feel like doing much.
I haven’t returned to baseline since Verapamil at all and the other drugs have just made things worse.
So here I am 15 months post Cipramil after having been through a myriad of drugs and bogus “migraine cures” and it seems like the ONLY one to give me some sort of normality was Cipramil. Going back to Cipramil for me seems like I’ve lost the fight for something better – like moving back home with your parents.
I’m flying out of here to the US and canada next week for 3 weeks. No idea if I should bite the bullet and take Cip again or just do nothing and ride out the bad periods with valium. Adding another drug (even Cip) at this stage could be worse than doing nothing.
Anyway, enough of my whinging. I’m glad to hear you’ve had such great success. Jennie mentioned trying Epilim. I may check it out.
