Anyone else recover and then go back?

I have been reading posts about how people haven’t felt normal in years and I had to ask if anyone here makes a complete recovery, say for a week or more, and then gets a set back again. This happens to me and it just kills me every time. Psychologically, it is so devastating. When we feel well, we begin to have hope for the future and I start making plans for myself and I am just high on life and then one day I wake up feeling like crap again. And then I never know how long or severe the next episode will be. This is why I haven’t started any meds yet, because of this cycle. I keep thinking that maybe one day the symptoms will finally leave for good. I always hold out this hope and postpone the meds because after all, who wants to take meds if they don’t have too? I am currently having a normal week and so don’t want to rock the boat by taking pills. Of course, I still get minor annoyances here and there like some tinnitus and a little ear fullness and the ocasional mild headache but not like I was feeling the week before with all the dizziness, ect. And then the week before that I was okay, so I never know from one day to the next. I have had episodes that lasted months though, so I don’t know what to do yet. Maybe just wait til another big one? God, I hate to think of that… :shock:
Anyone else?

Halfthere,

I haven’t been totally symptom free since October, but I’ve come close and I know exactly what you are talking about. My symptoms definitely cycle. Before I started on medication, I would have a horrible vertigo episode (along with the other symptoms) that would last from few days to a few weeks. Then I would gradually climb out of it over a week or so and feel like I was getting better. Some days I felt almost normal. Since I’ve had spells of vertigo over the past 5-6 years that never lasted more than 3-4 weeks, I would fool myself into believing this episode was finally over. Then I would crash again. After enough crashes and getting a diagnosis, I decided I needed to try medication if I wanted to keep working. That’s when I started Verapamil. The vertigo is almost completely under control now.

I still have some days better than others with my remaining symptoms, but I’m not having very many “almost normal” days. I think I can blame that on the Topamax. I’m strongly considering weaning off before the end of my 3-month trial. I have been on it for almost 8 weeks, 3 weeks at my full dose of 50 mg 2x per day. While it has almost eliminated my mild daily headaches, it has compounded the fatigue and confusion I was already experiencing. I’m really struggling at work and need to find a clear head. Before the Topamax, I had discovered following a low-carb diet makes me feel somewhat better. Unfortunately, you’re not supposed to eat low-carb on Topamax because of the impact on your kidneys. I want to go back to at least having some “almost normal” days.

Anyway, the short answer is YES my symptoms cycle like yours. If you weren’t having the headaches too, I would tell you to run back to your neurologist and ask for Verapamil instead of Topamax to get your vertigo under control. However, from my experience, the Verapamil didn’t help with headaches. The Topamax helped with headaches, but made some of my other symptoms worse.

Are you even more confused now…? :wink:

Halfthere,

Do your symptoms get worse with each cycle?

Julie

Hi Marci,
Not confusing at all, in fact that info helps because actually, my bad headaches are very infrequent, but I usually get a mild one every other day or so. They are usually mild enough that I can’t even really call them enough of a problem to warrant seeking treatment for them. No, its the dizziness and confusion that usually knocks me down.So verapamil might be a better choice for me too. I’ve heard the same thing from other people about the topamax only helping the headache portion of the migraine. Not saying it wouldn’t help me, who knows, but one thing about the topa that seems to be universal is the memory, fatigue and confusion problems. Uh, no thank you, those are what I am trying to get rid of!

Julie, do you mean my monthly or are they getting worse each time I get an episode? I can answer both anyway :lol:

I notice that I am getting symptoms before each monthly cycle and sometimes during.
And as far as the severity of each episode, I haven’t noticed the episodes getting worse, just more frequent. In fact they are somewhat better in the severety department, but that depends on the day. I remember one day a couple weeks ago when I thought, well, I’m dizzy but it’s not too bad, I think I’ll invite a friend over. My friend and I had been outside in the heat and I got so dizzy, I remember watching her talk to me but not really understanding what she was saying. I felt like I had been drinking. It was awful.
I have not been hit with it like I was back in October and I hope to God I don’t have to experience that hell on earth again. My husband wants to go to Vegas with friends in October and I am afraid to commit to that yet. Flashbacks you know. :cry:

I was asking only because i was wondering if things were worsening overall.

The biggest mistake I made was to do nothing. Actually i didn’t do nothing. The doctors I saw in the very beginning told me there was nothing to be done. So i did nothing. If i had treated this in the early stages, it would have been much much easier to treat. I am sicker by 100X. Once the illness took hold i went on a very fast downhill course and became quickly bedridden.

I wish I had researched more back then, but all it was was a little rocking, a little dizziness, it didn’t even interfere much with my life. If i had found this forum 5 years ago i would have been able to travel and would have bolted to Johns Hopkins for treatment. Instead i had to settle for second rate treatment which has left me managing my own titrations.

Some say that if this is a migraine it will run its course because that makes sense to them. i can tell you - mine was not going to run its course. it was only going to get worse and fast. There are many members of this forum who have been sick for decades and feel convinced, as I do, that this is a chronic illness. I will not be cured, i am medicated and hopefully i will eventually find the right combo of meds, and the correct dosages, that will give me my life back.

I can’t tell you how many times I thought to myself, and still do - i wish i hadn’t waited so long.

Julie

Yes, it’s something I think about a lot. I worry that it will get worse in time. The thing is , it use to be worse when it all started 7 years ago. I wouldn’t get it as often, maybe one episode lasting about 3 days or so and it would only happen once every two or three months. Then last June I had the one that lasted 3 weeks and then in October for two months so I worry about that happening again. I guess it’s true that it gets worse over time in one way or another. Either in frequency, severity or both.
I actually didn’t know I could do anything for it either until recently. I just got my MAV diagnosis about 2 months ago and prior to that, well, no Dr. could accurately diagnose me or treat me so I was left to deal with it. But luckily, I have a Dr. who is more than willing to try me on whatever medication works for me and he really listens to me and understands this illness. Thankfully. So maybe in time I will figure out a soloution, I have to overcome the fear of these meds though. They really scare me.

Halfthere,
It’s that raging debate, take the medication… or not, isn’t it? I think you have to reach a point with this godawful debilitating condition that you’re just at the brink of being unable to cope without it. I, like many on this board have reached that stage and if you offered me an opinion about a new or great medication I’d be ‘all ears’! And what’s more, I am prepared to take as much as I need to start to feel the benefits. I have no doubt that the future will bring with it a slow reduction of meds as my condition improves (which it has slowly over the past two years, but I don’t think it would have improved without my meds). My neuro is of the opinion that I need to get this demon under control first with whatever it takes, and then reduce the meds to a level that maintains my health. I have no hesitation any more, and believe me I had real dilemas with the whole medication debate, but now I think ‘whatever it takes’. Too much of my life has been waisted feeling too sick and ‘I’m here for the living’!!
You have to reach that point where your quality of life is compromised too much though and I fully understand where you’re coming from. Everyone has their own little journey to take and their own choices to make, I hope your choices are the right ones - just for you. :stuck_out_tongue:
wishing you much good health
Judy

You said it Jude!

That is the other reason I did nothing for so long, even after I crashed and knew I HAD to do something I was so terrified of the meds and talked myself into believing i would make a turnaround - ha! My husband and I said so many times - we’re paralyzed! Like you said, now if they offered something new I would be ALL EARS!

the first time my doc offered Topamax i broke out into a cold sweat. a year later i was begging for it. And I am more than game for Effexor. I’m even preparing for it by tapering down my Zoloft.

If you have a good doc who prescribes correctly, and that is the big IF, you do not have to suffer horrible SEs, just big benefits.

I wish I could do it over again - there was no benefit in my doing nothing.

Julie

Halfthere,

I might be one of the people that you are looking for feedback from.

I went misdiagnosed for years with meniere’s and basically went untreated for MAV. My symptoms kept getting worse until at the end I experienced a dizzy spell for 18 months. I am not symptom free, I still have days that are so-so, and some days where I am mostly normal, but I also still get the occasional dizzy spell that may last a few minutes to a few hours, to the rest of the day. My life has improved so much since we found the right combo of meds for me. I also do some things that I found on my own before getting a diagnoses; sleep, stress reduction, diet.

Commenting on a couple of other replies, my symptoms are very cyclic, just wish I could figure out the pattern. :roll: Chronic, that’s a good question, most of the articles that I have read talk about women and how there female cycles effect migraines, and how the migraine patterns will change with their life cycles. I haven’t come across anything talking about men specifically and how migraines affect us over the course of a life time. I have decided to accept that MAV is going to be with me long enough to consider and treat it as if it is going to be life long. If anybody has anymore input on “typical” migraines longevity for men would be appreciated.

“Hope for the best, prepare for the worst, and take what ever come” – author unknown.

Thanks for the replies guys,

Brian, my Dad has what we now know is MAV and he has slowly improved over time. He began suffereing from the attacks at about age 40 and now he is 65 and rarely gets symptoms. If he does, they are mild and short lived. I don’t think it’s always about the hormones because, although I have seen a correlation, I also get symptoms with weather changes. I have heard it’s all about breaking the cycle. But I’ve broken the cycle before, been symptom free for months and then wham! I don’t know about anyone else, but the longer I go between attacks the worse they are when they come. I hate this thing so much. I just wish I knew the best way to deal with it. Did you start medication while you were symptom free? Is it better to start it when you feel good or when you feel bad?

Hi all. it’s been awhile since I posted. My husband is the MV sufferer. He can go for several months feeling almost normal. He says he feels like he’s “on the edge” of feeling off balance but can work and pretty much function normally. Then, seemingly out of nowhere, it comes on again. Extreme fatique, mental fogginess, general crappy feeling.
His neuro prescribed amitriptyline and told him to only take it when needed. So he waits until he feels an episode coming on (usually preceeded by extreme fatigue) and then starts the meds. I don’t know if it really helps or if the MV is simply running its course. It can last from a week or so to 2 months before is fades into the background again. Very frustrating condition. It was suggested that he be tested for sleep apnea but has not so far done so.

Hi halfthere, I have had about 3 remissions in 15 years.
1 lasted almost a year,
the 2nd about 8 months
the 3rd only 3 months, nothing since.
yes I understand how it feels to have hope and then its snatched away.

teri:
a member here , I think it was Chaz , was recently diagnosed with sleep apnea, it could possibly be causing his mav , he’s waiting to see if the treatment for sleep apnea works .

jen

— Begin quote from "Halfthere"

Thanks for the replies guys,

Brian, my Dad has what we now know is MAV and he has slowly improved over time. He began suffereing from the attacks at about age 40 and now he is 65 and rarely gets symptoms. If he does, they are mild and short lived. I don’t think it’s always about the hormones because, although I have seen a correlation, I also get symptoms with weather changes. I have heard it’s all about breaking the cycle. But I’ve broken the cycle before, been symptom free for months and then wham! I don’t know about anyone else, but the longer I go between attacks the worse they are when they come. I hate this thing so much. I just wish I knew the best way to deal with it. Did you start medication while you were symptom free? Is it better to start it when you feel good or when you feel bad?

— End quote

Halfthere,

Weather changes also affect me, especially strong weather changes that are common where I live during the winter.

I take my medication on a daily basis and I did start in the middle of what I call a dizzy spell that lasted 18 months with no relief. The nuerologist who diagnosed me told me that the only way she knew to confirm a diagnoses of MAV was to start treating the symptoms as if they were miagraine and if they lessen in strength or frequency then the diagnoses was correct. If not, keep looking for the cause of the symptoms.

For me, within a few days of taking every med I tried my symptoms would lessen, so that was considered enough for confirmation. We had to try three different meds before we found one that works, and the major part of my symptoms have gone away.