How do you push yourself to be normal?

Specific Illnesses & Conditions VM/MAV
1

I know that is a loaded question but I hear many of you talking about still working and basically carrying on with a daily life…

I would really like to know how you are able to do this with this disease…I have done some better over the last few months but at the same time I cannot force myself to go out and LIVE…

My anxiety as I mentioned earlier seems to have gotten worse and in the last few days it seems as though the MAV symptoms have kicked up a notch.

My head feeels weird all the time as if something is crawling on it in places, plus the pulsation I am having in my ear is driving me crazy and that only started a month ago…plus the muscle spasms and all the other twitches and such that seem to go along with this is enough to make one crazy…

I just want to be able to have a normal life again…I like many of you see and hear my friends talk about doing things and I so want to be able to do them but I cannot and it really wears on the emotional part of this whole disease…

There is no way I could work right now with this as it is just a bit manageable to stay at home and do very little or is that just making it all worse…

2

Hi Timeless,

I try my best to do as much as possible even if I feel like heck doing it. It doesn’t always work out very well and many times I end up stopping an activity or work short and coming back home. Sometimes it does help to get out but I have determined that for me it could go either way - sometimes better to push, sometimes worse. I try to set small goals for activities. The most frustrating thing is that I cannot predict the times that pushing it will be good or bad. I too have had the anxiety component increase recently and that has been most frustrating.

Good luck and try to be positive and take small steps.

Ben

3

Hi Timeless,

Like you, I was UNABLE to function!!!I am able to live my life now, with 3 migraine preventatives and time. At my worst, I was unable to leave the house and I was afraid of being alone. It took awhile for me to be diagnosed, so alot of that time I didn’t know what was wrong with me. Once we found out, and I was put on my 1st med, it was still very hard to function. As the meds began to work, I then began to put my life back together. It took quite awhile before I was able to feel normal and then more time before I felt normal enough to have my life back. So even though things like exercise are suggested, that also took awhile to incorporate into my life.
Really, we live in such a faced paced society, but this migraine syndrome requires something different from us. Today’s world allows us instant communication, drive through banks, food, prescriptions etc…and yet migraine requires us to slow down, reflect on what in our life is causing these symptoms and to avoid the fast paced world ideas. It really is our body saying, “hey wait a minute, I don’t like this food you are feeding me, or the lighting you expect me to stand in, poor sleeping habit etc…slow down and try to keep me from these things!!!” Hang in there you will get your life back, but you need to expect a “new normal” I have had to say no to many things these days, and pay more attention to how I am treating my body and self, or the awful symptoms come back…the meds are a tool to help us but not the COMPLETE solution, there are things we need to do as best we can. the other thing that migraine requires of us is patience…which is SOOOOOOOOOOO hard when you feel miserable. But that REALLY stood out to me at my worst…the meds take time to work, sometimes you need to add in 1 or 2 more, or that med doesn’t work and then you need to try another…so patients is vital (hard, difficult, obnoxious, but vital)AND routine…migraine likes routine same eating time, same bed time etc…as best you can.
We are all in this together, so you are not alone in your feelings, and the other hard part is that as mad as we get? that just triggers more symptoms!!! BUMMER!!! so decide that this is your new normal, this will take awhile, slow down and tell yourself “it is what it is, getting mad about it will just aggrivate my symptoms” you will have your new normal, I promise!!!

Pam

4

— Begin quote from “pamg6”

Hi Timeless,

Like you, I was UNABLE to function!!!I am able to live my life now, with 3 migraine preventatives and time. At my worst, I was unable to leave the house and I was afraid of being alone. It took awhile for me to be diagnosed, so alot of that time I didn’t know what was wrong with me. Once we found out, and I was put on my 1st med, it was still very hard to function. As the meds began to work, I then began to put my life back together. It took quite awhile before I was able to feel normal and then more time before I felt normal enough to have my life back. So even though things like exercise are suggested, that also took awhile to incorporate into my life.
Really, we live in such a faced paced society, but this migraine syndrome requires something different from us. Today’s world allows us instant communication, drive through banks, food, prescriptions etc…and yet migraine requires us to slow down, reflect on what in our life is causing these symptoms and to avoid the fast paced world ideas. It really is our body saying, “hey wait a minute, I don’t like this food you are feeding me, or the lighting you expect me to stand in, poor sleeping habit etc…slow down and try to keep me from these things!!!” Hang in there you will get your life back, but you need to expect a “new normal” I have had to say no to many things these days, and pay more attention to how I am treating my body and self, or the awful symptoms come back…the meds are a tool to help us but not the COMPLETE solution, there are things we need to do as best we can. the other thing that migraine requires of us is patience…which is SOOOOOOOOOOO hard when you feel miserable. But that REALLY stood out to me at my worst…the meds take time to work, sometimes you need to add in 1 or 2 more, or that med doesn’t work and then you need to try another…so patients is vital (hard, difficult, obnoxious, but vital)AND routine…migraine likes routine same eating time, same bed time etc…as best you can.
We are all in this together, so you are not alone in your feelings, and the other hard part is that as mad as we get? that just triggers more symptoms!!! BUMMER!!! so decide that this is your new normal, this will take awhile, slow down and tell yourself “it is what it is, getting mad about it will just aggrivate my symptoms” you will have your new normal, I promise!!!

Pam

— End quote

Pam

That is my problem I am afraid to leave the house by myself and being alone for fear that something is going to happen and no one will be around. This is so not me…I have never been afraid and never been unable to not be on my own. So how long does it take…and if you do not mind what meds are you on and how long did it take them to work…

I know my normal will not be what was once my normal but at least to be able to live without fear and live to be able to go and do things again within limits.

I hope my neuorlogist can give me some hope…to be able to move forward.

5

Hi Timeless,

I was started on 25mg of Nortriptalyne and am currently on 75mg. During that time I saw my Primary care doc and my bp was a bit elevated and she wanted to put me on something. Since I had read Dr. Buchholz book, he also recommends Verapamil as a migraine preventative, so I asked my doc if she would put me on that…I am currently on 360mg of ER or SR. Then I went back to my headache doc and although able to function, I still thought there would be room for improvement so his next plan was to add in Effexor. I really like the Effexor, because I felt like it took my just ok mood to a few notches better. My headache doc says that Verapamil is the med that “quiets the storm” of migraine. In my position, I wonder if maybe only Effexor would have worked ok by itself, but I will never know, because I am on all three and I don’t plan to stop or drop one for quite awhile…why? the fear of it coming back full force!!! Trust me, I know the fear you are feeling. I was SURE that something would happen, plus with me one of my big symptoms was the “brain feels like it is rattling inside my head” feeling…I was sure that if I was alone or out and about, that the rattling feeling wouldn’t stop and I would have to go to the ER like I did in May 2007. I really wish I could tell you how long it took to feel better, But if I had to guess, I would say that I was having “normal” head feelings at some point everyday if not most of the day, by about 1 month? BUT, I did continue to feel even better as time went on…so the more time you give these meds…the better you should/will be feeling. My Nortriptalyne wasn’t titrated up as slowly as some on the boards. I think I went up in 25 mg segments. I also felt hopeful with each day that I took a pill, in the sense that I knew it would be one day closer to feeling better.
When is your appt?

Pam

6

My appt is Monday morning at 7:30AM I wonder about the Verapmill since I have very low blood pressure anyway…would that be a problem…

I am so med sensitive and that also concerns me …so dare I ask what were your side effects.

7

Hi Timeless,

You know, I actually had no side effects!! I was very surprised by this. I have always hated meds because I have always reacted to meds in a bad way. I am not sure what the difference was this time…maybe I was so desperate to get better, that I had a different mind set going into this med situation? I am not sure. I wonder now, if maybe it was really just anxiety that gave me the side effects…maybe I really wasn’t having all the side effects that I thought I was in the past…I am not sure. Also,the Nortriptalyn and the effexor doses for migraine useage are below the theraputic level…so really they are very low doses. Also the verapamil is known to have very low to no side effects. As far as the bp issue, I am not sure. I am glad you appt. is early on Monday…as far as maybe getting some answers. Do you know this neuro that you are going to? is he familiar with migraine stuff?

Pam

8

Hi Timeless,

I can’t live a normal life either… Everyday is a challenge for me too. I do try to leave the house by myself and I got this job on Saturday mornings which is forcing me get out, but it’s tough…I’m sure you know.
I’m also scared all the time of being alone, and if I’m out by myself I feel anxiety…
I actually was teaching a fitness class at a gym when I got my second dizziness attack…It only lasted for a few seconds so I stopped the class and drove home…but it wasn’t fun…
I agree with Pam that you have to try to strive for a “new normal”. Whatever that might be…

I’m in San Fransico today, cause my boyfriend and I drove up from LA to see his mom for mother’s day… It was a long ride and I felt really bad when I got out of the car. I had to take a Xanax so I could pass out…Today when we went out to eat I had to leave the restaurant becasuse I got super dizzy and everything was rocking…I’m now stuck in a hotel room waiting for my boyfriend to get back from his parents…It’s frustaring to feel like you can’t do anything and you can never make plans…

I’m going to start taking Paxil tomorrow or Tuesday…I hope it will give me some relief soon cause I’m feeling really really depressed right now…

Emma :frowning:

9

Hi Emmasaga,

What a difficult weekend for you!!! Is Paxil the first med you are trying? Take it today…try not to wait another day…begin the prcess of healing your body and giving it some rest with the med. If anything the paxil should also help in the mood and anxiety department right? I know I had a slight elevation in my mood from even a small dose of Effexor. Take your med today, take it with confidence…you will be ok…remember that with migraine drugs, typically the dose level is way below the theraputic dose…I kept telling myself that, otherwise I would freak out with panicky thoughts. Have today be a new day for you.
We are here for you!!!

Pam

10

Well I had my appointment today and he wants to send me to the The Dizziness and Balance Center at Emory in Atlanta.

— Begin quote from ____

The Dizziness and Balance Center at Emory consists of a multi-specialty group of physicians and physical therapists with specialists from Neurology, Physical Therapy, Ophthalmology and Otolaryngology. The Center specializes in treating patients with dizziness, vertigo and balance disorders and has several ongoing research projects. Specific interests include Meniere’s disease, benign paroxysmal positional vertigo (BPPV), vestibular neuritis, ototoxicity, nystagmus, balance and falls.

— End quote

— Begin quote from ____

Ronald J. Tusa, M.D., Ph.D. is a board-certified Neurologist and oversees the center. His primary appointment is in the Department of Neurology and he holds joint appointments in the Departments of Otolaryngology, Ophthalmology and Rehabilitation Medicine. His research interest is in tests that identify vestibular deficits, causes of disequilibrium, the medical treatment of dizziness and the causes and treatment of nystagmus.

— End quote

http://www.emory.org/departments/neurology/Dizziness/index.html

He feels like I need a multi-level approach to determine what the real problem is since I have had different opinions form different doctors within the area. He said these are the specialists to use in Georgia and if this does not work he will send me to the Mayo Clinic in Florida. Plus he wants to do another MRI of the brain with contrast…and then he will call me.

He wants to change the Valium I am taking to Klonopin as he feels it will be better for me. Plus he wants me to try the Neurontin which I am a bit afraid to do until I see these specialist.

He was nice enough but spent about 20 minutes with me…no real exam to speak of just talking and getting information which I had plenty of that I had compiled over the last year…

So I am not sure whether I should wait until I can get into to see the speialist or try the medication I am just so scared of all of this. Has anyone had any experience with either of the drugs…mentioned above?

11

I am on Klonopin and take .5 mg a day - .25 in the am and .25 in the pm. I have had no problems with it other than the initial getting used to it (can make you a little woozy at first). I also take a tricyclic antidepressant called Tofranil 10 mg at night as it can make you tired.

12

It is not easy… I wake up each morning and for 30 seconds I think I’m better and then the pain and the dizziness comes back. I know I have to pay my bills, I know I have to go to school, and I know I am the only one who is going to get myself there so I just do it. I take all the faith and energy I have and I put it towards the positive. There is no sense in letting it get me down. Now, of course there are those days when physically, I cannot even get out of bed and those days are the most depressing. It has taken me four years to get a diagnosis, and I think all my friends are tired of hearing me complain, so I fake healthy until I can’t anymore. I just started on medication and hopefully it works. Everyone thinks this is the magical pill, but they forget that side effects are sometimes just as bad as the real thing. Hang in there. You just have to remember that you can make it through the day. Think positive. Though that might not make you physically better, emotionally it might help. I’m sending positive vibes your way!

13

I agree with NYD that you have to stay positive and active even though many days are a struggle. Along the way I’ve even found a few minor blessings in disguise. MAV and the pharma roulette wheel that goes along with it seem to have taken some of the edge off my lesser desirable type A personality traits. Also, I’m fortuante to have an understanding wife who knows that I’m trying to get a grip on this condition without undue drama. Good luck to all.