I didn’t want to post this as I just wanted to wait a few days to see if this is just situational, but I’m on the verge of tears and just looking for support and encouragement.
I just got back a couple days ago from beautiful Lake Tahoe. We have a condo up there that my sister lives in now and she and my family urged me to go for a mental vacation as I was so down about falling backwards after attempting to go back to work after finally feeling much better from the Effexor! I was feeling so good before going back to work, probably about 75%~80% on my best days. A far cry from being practically bed ridden for 6 months. I felt I was getting my life back. So I went to Tahoe and felt really good while there. I did a lot of relaxing and was really enjoying myself more than I have for way too long. I did have an occasional drink (one drink a day max). I did indulge a little of caffeine by having a few half cups of coffee which made me dizzy for a short time, but nothing major. Other than that, I had regular sleep schedule, exercised and ate pretty healthy. Everyone around me was mentioning how great it was to see me relaxed, stress free and happy.
But the last few days there, I was starting to feel MAV symptoms again. Nausea, full ears, dizzy, brain fog etc. and the day after I returned, I couldn’t even get out of bed. Today I feel a bit better but certainly not good enough to do anything but lie here. I have added stress now because I can’t work again and don’t know how I can make a living. Ugh
Do you guys think the Effexor isn’t working anymore. I’m on 112.5mg. Is it possible that I need to switch meds again? I see Dr Fife in 3 weeks and I’m wondering if he will completely switch me.
I’m just so depressed again. Before I had MAV, I was never this sad and frustrated!! I think what makes this so hard this time is that I finally experienced joy and happiness again. I was feeling what it was like to live again
Do we really have to pay the price for enjoying ourselves? Am I just supposed to be home bound my whole life and robbed of happiness? And when I am feeling happy, is MAV just lurking around the corner like a predator watching and waiting to attack? Or is there really hope?
It certainly sounds like the Effexor is not working, or at least not working well enough at this dosage. What other medications have you tried? There are so many different suppressant medications that my personal feeling is that one isn’t working after a few months, either up the dosage and see if it will work or try something else. I’m not familiary with effexor so I don’t know how high of a dose you are on.
I’ve tried imipramine and verapamil. Both with no success. The Effexor was working so good so I’m wondering if it was just the vacation that threw me off. I don’t understand how a medication can just stop working. I see my dr in a few weeks so I will see if he wants to increase dose to 150 or just change. It’s good that I have a couple weeks to see if my MAV just kicked in from the flying and vacation. Hopefully I’ll go back to normal soon.
Hey Mary,
I think (from personal experience and from reading so many posts) that our brains can not handle any kind of change. I also think that being worried and upset makes it worse. I’ve learned that it does for me at least. I don’t think MAV is linear. I think you are going to have some bad days. Or bad times. Overall I think you are going to recover from the trip and be back to 75-80%. I certainly would not jump ship on the Fex. I’d try to get into a super regular schedule, i.e., meals, sleep, etc. Although I’ve made a lot of improvement myself I have found that any change whatsoever in my schedule is hell for my vertigo. I can go from feeling 60% better to 0% in a matter of hours if I eat dinner too late, get too stressed out, have been in the car too much, etc. Hang in there Mary! I think you are going to be okay, I really do. Give it some time. I’ll be praying for you.
Short answer (for a change It truly can be discouraging to feel pretty decent and then “tank” and feel horrible again. I’ve been up and down all week, and honestly, I’m past my bedtime now because I have felt pretty good for about 5 hours now after feeling terrible all day, so I hate to go to bed. That said, I wouldn’t necessarily go so far as to blame your vacation just yet. I know for me that hormones (perimenopause) are a huge trigger. It’s possible that you’ve just stumbled onto a lousy cyclical swing. Also, I wouldn’t ditch the Fex, either - it’s definitely been helping. I wonder, though, if you’re having so many issues between this kind of setback and your difficulties driving, maybe you should try adding a little bit of something else into the mix to “plug the holes” so-to-speak…
My experience is also that it goes up and down, although on the right treatment. Sometimes you just hit the hard times, but you will get back to were you were before the setback. I go into panic averytime; is it back for good oh no no no… But it always goes back to the “okay” stage again. And now it is under a week when I feel bad again, and it commes every 2 month. And I now this will get less and less, for you to… Best from me to you.
MAV is not linear. That is the sentence that help me the most when bad times come up. Whenever I have a set back I repeat this sentence over and over again and try not to panick. I am working on accepting that this as fact - for me at least: MAV will show it’s ugly face from time to time. I can’t help trying to figure out what causes it - and the answers seems to be centered mostly about: hormones, stress, even shifting from work-week to week-end. However, I try not to get to much into this since I can’t really stop my hormones, the stress that naturally comes when trying to live, and friday turning into saturday. So on my bad days I just repeat the words ‘MAV is not linear and I will feel better again’.
All the best
Chris
Speaking as someone who has got control over this condition, has a pressured job and been back at wok for years now (I was disabled by this initially for 2 yrs) I would say it does go up and down, especially if, as it is with me, your medication helps you a lot but isn’t 100% effective.
Did you drink caffeine before this relapse? During your better period? If not I would strongly suspect that is the culprit, probably coupled with a change in routine. Unfortunately relaxing can actually bring migraine on - it’s the come down after stress which does it. Hence people often getting regular pain based migraine headaches at the weekend. Also, as brutal as it is, MAV doesn’t care if you’re on holiday so have some coffee and few drinks, it just knows you’ve had coffee/alchohol and it will trigger the MAV regardless. I’m not strict with all aspects of a migraine diet, in fact I often get away with MSG and some other stuff, but I am very strict with caffeine and chocolate as those things will send me stratospheric. I have learnt from brutal experience I can’t have them.
My guess is some relaxing combined with some migraine triggers has sent you in to relapse. The good news is that the neurologists tend to say once you have achieved some control with a drug, then the relapses are shorter and sometimes less severe. This has been my experience since I got a lot of control over the condition with propranolol. I would suggest upping your dose of the effexor (obviously check with your doc) and staying very, very calm. I have been there with the work anxiety - I won’t be able to support myself if I don’t get well etc…It’s horrible. Really try not to go there, tell yourself, this too shall pass, don’t freak out about the symptoms, relax in to them, keep telling yourself it will go. Panic in itself is a trigger and as tempting as it is to go there, you really need to stay calm.
I have been sick as a dog with this when relapsing and then back at work within a few days. It almost certainly won’t be the same as when you didn’t have a medication that is helping .
I want to change what I originally said and agree with others here–if the Effexor was working for you as well as you said it was, I wouldn’t give up on it easily. Do what others are saying–try to get back to “normal” and see if you get back to being better. Or talk to your doctor about getting on a larger dose. Maybe you have learned that you can’t “relax” and have alcohol & caffiene, even in small amounts? While that is disappointing, it isn’t the end of the world. I’ve given up alcohol simply because you aren’t supposed to use it with topamax anyway, and topamax can ruin the taste of carbonated stuff, so I haven’t been drinking caffiene. I’m not happy about either of those choices, but feeling well is more important.
Finding a medication that works for you can be difficult, so I’d put more work into getting the Effexor back to working before I’d go back to trialing new medications, for sure.
Just wondering: is Lake Tahoe a significantly different elevation than what you’re used to? Even before the MAV, when I went to Boulder I was fine for close to a week, and then zap! my system decided something wasn’t right.
I think Hannah covered this well. After reading your post I think too that it was most likely triggered from the routine change (holiday), new place, alcohol and coffee. All three of these things will set me off – especially coffee. That alone with a trip somewhere can bring on an episode of ear fullness and massive pain and misery.
How long have you been on Fex? I wouldn’t freak about the dose or changing anything yet until you’ve had time to normalise. It will definitely pass. For some of us the meds are not enough to totally knock this out and a routine upset can still be enough to set this off for a short period. Stay with Fex if it was working.
I love all you guys. Thank you all so much for the responses.
David~ lake Tahoe is very high. Elevation is 6500 ft and I flew there from Phoenix Arizona. I’m sure that had a lot to do with it. But I go there a lot in the summer and I hate to think I will come back feeling like this every time. Im thankful that MAV isn’t a fatal illness but sometimes I don’t even feel like I’m living. Do you know if it ever ends?
How long have you been on Fex? I wouldn’t freak about the dose or changing anything yet until you’ve had time to normalise. It will definitely pass. For some of us the meds are not enough to totally knock this out and a routine upset can still be enough to set this off for a short period. Stay with Fex if it was working.
Hope you feel better soon!
@mvertigo_guy
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Hey Scott, I’ve been on fex for about 2 months, but upped my dose from 75 to 112.5 a few weeks ago. I guess I’ve had too much change in a short time.
BTW, have you been getting my tweets and mentions on twitter. For some reason, I don’t think they are getting to you. But I have sent a lot of people to your forum. I have been using hashtags #dizziness#migrainevertigo#migraine#chronic etc
Hey Mary…So sorry that this happened to you. After reading everyones responses, a couple things I just want to re mention (is that even a word???lol) Anyway, Don’t give up on the Effexor. If it has been working for you, then “keep on keeping on” with that. Migraine HATES change. Change of any kind will cause migraines to rear its ugly head. I too think the elevation might have also been a factor. So you add just the 2 things I mentioned…change + Elevation = migraine flare! Also you could have had some harmonal fluctuations going on to boot.
Just a thought…I take 3 daily preventatives. You could very well want/need to add another one in. Ask your doc about that when you go in.
As best you can ( and trust me I remember how difficult this can be) focus not on the couple of yucky days, but more focus on how well you have been doing…try not to let a few yuckys ruin the strides you have made.
Does this go away??? I am not sure. If I need to be on 3 daily prevetatives for the rest of my life, so be it. I NEVER NEVER EVER want to go back to the very dark hole I was in when this began in "07!
Hey Mary…So sorry that this happened to you. After reading everyones responses, a couple things I just want to re mention (is that even a word???lol) Anyway, Don’t give up on the Effexor. If it has been working for you, then “keep on keeping on” with that. Migraine HATES change. Change of any kind will cause migraines to rear its ugly head. I too think the elevation might have also been a factor. So you add just the 2 things I mentioned…change + Elevation = migraine flare! Also you could have had some harmonal fluctuations going on to boot.
Just a thought…I take 3 daily preventatives. You could very well want/need to add another one in. Ask your doc about that when you go in.
As best you can ( and trust me I remember how difficult this can be) focus not on the couple of yucky days, but more focus on how well you have been doing…try not to let a few yuckys ruin the strides you have made.
Does this go away??? I am not sure. If I need to be on 3 daily prevetatives for the rest of my life, so be it. I NEVER NEVER EVER want to go back to the very dark hole I was in when this began in "07!
Hang in there and keep us posted!
Pam
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Hi Pam, thank you so very much. I know you are on nort too from what I remember and when I see Dr Fife in 2 weeks, I’m going to bring it up as an addition. I am on the generic of Effexor and it has worked pretty darn good until recently. Do you think I should try the non generic? Does it cost a lot more? I only pay 4$ for generic prescriptions. I’m willing to pay more if I think it would work better. I’m just curious what you pay to see if it’s affordable.
I think the name brand does cost more…My husband was given some type of coupon (I’m waiting for him to call me back so I can see if you can get one too) so we only pay 4$ for the name brand…but was willing to pay more… I guess I need to ask how long you have been on the generic to see if that might be the reason. I just know I tried the generic 2ce and was absolutely flat on my back with kind of withdrawl symptoms…I have heard others had the same reaction to the generic as well. But talk with the doc and ask him if there are ways to pay less for the name brand.
I think the name brand does cost more…My husband was given some type of coupon (I’m waiting for him to call me back so I can see if you can get one too) so we only pay 4$ for the name brand…but was willing to pay more… I guess I need to ask how long you have been on the generic to see if that might be the reason. I just know I tried the generic 2ce and was absolutely flat on my back with kind of withdrawl symptoms…I have heard others had the same reaction to the generic as well. But talk with the doc and ask him if there are ways to pay less for the name brand.
Pam
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Thanks Pam. I’ll talk to my dr when I see him on 6/25. I haven’t had any bad reaction to the generic, but I’m wondering if the Effexor will work better. I’m not working right now so not sure I can afford a big price. I will ask my pharmacist too. Do you take generic nort too? I just really need to get this under better control so I can get back to work.
I think nortriptyline IS the generic name. I think it has been marketed under brand names such as Pamelor. Not 100% sure on this.
I love that I can get my allergy medicines as generics now. I can get an entire years supply of Loratadine (Claritin) at Costco for under $15! Used to cost hundreds.
I’ve heard there can be some dosage adjustment issues between generic versions of things like Effexor or Topamax. I’ve never taken anything but generic topiramate so I can’t compare it to the brand name Topamax stuff to know if it takes more to work or not. Effexor specifically seems to have has a lot of generic vs brand name issues.
I have added stress now because I can’t work again and don’t know how I can make a living. Ugh
for your response.
It truly can be discouraging to feel pretty decent and then “tank” and feel horrible again. I’ve been up and down all week, and honestly, I’m past my bedtime now because I have felt pretty good for about 5 hours now after feeling terrible all day, so I hate to go to bed. That said, I wouldn’t necessarily go so far as to blame your vacation just yet. I know for me that hormones (perimenopause) are a huge trigger. It’s possible that you’ve just stumbled onto a lousy cyclical swing. Also, I wouldn’t ditch the Fex, either - it’s definitely been helping. I wonder, though, if you’re having so many issues between this kind of setback and your difficulties driving, maybe you should try adding a little bit of something else into the mix to “plug the holes” so-to-speak…