Do any of you have this going on when in a bad state? From day one with this junk, and when very symptomatic (and unmedicated) I have had a hard time lying horizontally. I fall asleep and it’s ok but then wake hours later feeling totally wired, heart racing, and then when I sit up I have a terrible dizziness in my head. Sitting up and opening my eyes stops the palps. I know it’s the dizziness (MAV attack causing this). For example, I’m awake now at 5 am because of this. I’m not psychologically stressed at all – quite calm surprisingly – yet my body is wired and I can feel migraine at work in my head. Typing now is ratcheting up dizziness. Fortunately there is one thing I can use to temporarily take the sting out of this and that’s valium but I’m using too much of it for my liking lately. I can see so clearly right now how this crappy condition makes people so incredibly anxious only to have a doctor tell a person “you’re just anxious”. If you were new to this and had this going on, anyone would be scared to death wondering what was happening to them.
This has been going on now 2 nights in a row which is really unusual for me but I prob revved it up by doing a short but leisurely long walk with a friend yesterday. I think the water level “in the pool” is only a hair width below my nose right now.
I find sitting up quietly doing a meditation and 2.5 mg of valium will rein it in for a while. I’m def in a bind right now because all of the meds I’ve tried lately make me feel pretty lousy. Really feels like being stuck between a rock and a hard place.
Hey Scott,
Sounds awful what you are dealing with now and all the attempted med trials you have been putting yourself through lately. I really feel for you. I too have terrible sleep issues, being woken by dizziness…
I just had one thought and was wondering your feelings on the following… Since valium does help you, would you consider taking this drug or another in it’s class like clonazepam regularly instead of PRN. Since you respond to valium, maybe a benzo is the answer to permanently stopping your MAV. I take clonazepam .5 mg daily and unfortunately for me, it does nothing, but since I am trialing verapamil, I am continuing it just to keep things constant. I spoke to my neuro the other day and he does use clonazepam to treat MAV (so does Dr. Furman). Maybe since you do respond to valium, taking that or another benzo as your preventive may do the trick. I know so many are resistant to being on benzos (trust me, I was too), but if something could give me my life back I would take it in an instant.
Since valium does help you, would you consider taking this drug or another in it’s class like clonazepam regularly instead of PRN. Since you respond to valium, maybe a benzo is the answer to permanently stopping your MAV. I take clonazepam .5 mg daily and unfortunately for me, it does nothing, but since I am trialing verapamil, I am continuing it just to keep things constant. I spoke to my neuro the other day and he does use clonazepam to treat MAV (so does Dr. Furman). Maybe since you do respond to valium, taking that or another benzo as your preventive may do the trick. I know so many are resistant to being on benzos (trust me, I was too), but if something could give me my life back I would take it in an instant.
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I was taking .5 mg of ativan twice a day and WAS feeling better, however Dr. Hain said he would not continue to prescribe it on a daily basis because it can become addictive. I wonder if the dose becomes ineffective after some time or you just want to continue taking it every day. DO some doctors really prescribe benzo’s as a preventitive?
Sarah
Yes Sarah, some docs absolutely prescribe benzos as a preventive. I just named two of them in above post. The goal is to get you better and able to function and feel well. Many people take benzos for life. Until this illness struck me, the idea of that bothered me too. But after suffering for so long, any med that helped me I would take and I would find a doc to prescribe it to me. I find it very hard as a physician myself that a doctor would not prescribe a benzo regularly to someone if it improved their condition. Docs use benzos all the time for patients who need them long term. As long as the doc is assured the patient is not using this drug for recreational purposes, most docs would prescribe this on a long term basis.
You just made me cry! I can’t tell you how overjoyed I am to hear this. Hopefully my doctor will be as understanding. I will definitely be calling my primary care physician this Monday in regards to this. I’ve been avoiding taking them because my doctor told me I should only take them when the dizziness gets super bad. For awhile I was taking them daily and I wasn’t spectacular, by any means. I couldn’t run errands or go into any sort of store or restaurant, but I could clean the house and make my way through the day with out fear of constantly falling down. At least it took the edge off my symptoms. You seriously made my day.
Sarah
Hey Sarah,
I’m so glad you can find relief with any med! I would discuss clonazepam with your doc instead of ativan as this is a very long acting benzo and is usually presribed for MAV and people who are on benzos long term who take them daily. It is much easier to taper off if you decide to in the future as it’s half life is very long.
I’ve had “dizziness” and other symptoms for 9 months (as of next Friday) and this past week my symptoms seem to have changed. I used to be fine while sleeping. Every night this past week though, I’ve been woken from my sleep feeling dizzy only a few hours after going to sleep. Also, usually I can’t tell until I’ve been awake for about an hour if it will be a dizzy day, but now I can tell as soon as I roll over in bed.
Is it normal for symptoms to change. I’ve been on effexor now for almost a month and have just upped my dosage to 37.5mg. Frankly, I don’t think it’s helping and am nervous about coming off of it.
Hey Lisa Rebecca,
Yes, symptoms can change. I never had any sleep issues and then I began to have the same symptoms as you at night and in the morning. It is devastating and so difficult to suffer all day and then at night too… hang in.
I wonder if the effexor is causing this? Maybe you are just adjusting to the increased dose?
I woke up in June with the most horrible panic attack I’ve ever had. I was sleeping peacefully, no nightmares or anything, and I woke up suddenly: heart racing, sweaty, horribly dizzy, lightheaded, feel like I can’t breathe. My husband was away on a trip, so I didn’t have him there to calm me down. I was so scared that something was seriously wrong (or, I thought, why else would I wake up like that?) that I ended up calling an ambulance and going to the ER at 4 in the morning.
My MAV was generally much worse in June/July than it is at the moment. So there much be a connection between waking up like that and having stronger MAV symptoms during the day too. The only real stress in my life right now is because of my health problems, so it’s not like I have anxiety due to anything else. I do tend to wake up every couple weeks now like that, although thankfully not nearly as severe, and I can usually calm myself down ok. (Btw, I am not on any meds for MAV right now…trying the diet first).
Scott: I get the exact same thing happen to me. Just a week ago I woke on Thurs. morning at 4 a.m. I was so dizzy and couldn’t lift my head. I was sweating, heart pounding, etc. I also feel better sitting up and sitting perfectly still. Its almost like I lose all sense of gravity any sense of movement sends really bothers me. I was very nauseous, my neck and heat were red hot. I took an ice pack to the back of my neck side of my head. I took some meclizine and Advil and it seemed to settle down enough for me to go out to the store by the afternoon time. But I always have to sleep on two pillows. I hate lying down, it really bothers me. I sometime sleep in a recliner for this reason.
Hope things get better for you.
I get this on certain nights when I dont get to sleep early enough. Just as I am about to fall asleep my heart starts to race (really fast) quite frightening and I might be as calm as anything at the time it happens. Some nights it has happened all through the night, every time I try to sleep, by which time I am definitely feeling anxious. Propanalol 1 x 10 mg tablet stops the palpitations. I keep them in the cupboard and only take one if this happens, or if I am due to go for an MRI scan, something like that.
Thanks for the replies everyone. Well, I must be sucker for punishment but I am having a THIRD crack at Paxil, this time at an even lower start dose. I actually felt good on this stuff the first time after a while despite gut issues but have to make this work. It feels like the cleanest SSRI yet in terms of a clear head. I’ve been jacked up all day from it of course and now it’s bed time :shock: I’m feeling serious dread about going to bed. What was once a blissful thing to do has now become a one-way ticket on the hell express. I’ve got a pile of valium next to the bed.
This week I am going on holidays so hoping I can get through the drug hell without worrying about work –- although there’s the small matter of a flight from Sydney to Toronto via LA and NY.
Thanks for the tip Lisa re clonazepam. I might see my doc about this tomorrow to get me through the next week. I’m always paranoid about addiction.
It just occurred to me that I’ve been battling this garbage now coming up on 6 years Aug 30. I can hardly believe it. :?
Thanks for the replies everyone. Well, I must be sucker for punishment but I am having a THIRD crack at Paxil, this time at an even lower start dose. I actually felt good on this stuff the first time after a while despite gut issues but have to make this work. It feels like the cleanest SSRI yet in terms of a clear head. I’ve been jacked up all day from it of course and now it’s bed time :shock: I’m feeling serious dread about going to bed. What was once a blissful thing to do has now become a one-way ticket on the hell express. I’ve got a pile of valium next to the bed.
This week I am going on holidays so hoping I can get through the drug hell without worrying about work –- although there’s the small matter of a flight from Sydney to Toronto via LA and NY.
Thanks for the tip Lisa re clonazepam. I might see my doc about this tomorrow to get me through the next week. I’m always paranoid about addiction.
It just occurred to me that I’ve been battling this garbage now coming up on 6 years Aug 30. I can hardly believe it. :?
Scott
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You are a brave soul Scott maybe this will work for you.
I wonder why they want to use clonazepam instead of valium. My doctor wanted me to change but since the valium was working I was afraid to try.
Hope you have a good trip and a nice visit in spite of all this crap. Let us know how you are doing.
Thank you again for this site. It is such a lifesaver for so many here.
Sorry your having such a hard time!! I for one say if the valium works USE IT. It is ridiculous that you have suffered for 6 years. I know a lot of docs think we are just anxious and stressed out, you know what? We are!!! But there are physical reasons for it, you wouldn’t tell a diabetic not to take their insulin would you? No of course not! I believe it was you that pointed out to me that a “fruit cake pills” have helped a lot of people, and you know what? I’m sticking to them, I’d rather be a fruit than dizzy. If nothing else this Zoloft is definatley keeping me from getting worse, I was able to attend my son’s wedding yesterday and even did the mother son dance with him without anything awful happening !! I am not normal yet but I might be getting there.
What happens to you at night also happens to me, I think because we fight so hard during the day to remain stable that when our bodies try to chill out at night our brains become overloaded in a different way. I firmly believe we have no control over it, for crying out loud it was one of my first symptoms BEFORE the stress of being ill everyday. So I, for one, am trying to get over my fear of being addicted to some med(s) and am instead going to work on getting better with them, it’s not like we are getting high we are getting healthy!
I am going to say something that was said to me when I was so resistant to starting a benzo (a colleague doc of mine who is also a good friend) and it helped put the idea of being “addicted” to something in perspective:
“I don’t mean to sound harsh, but if there was something, anything, that could give you your life back, (and 6 years is too much time to be suffering), who the -----ck cares if you are addicted to something.”
Once again, I want to reiterate, yes benzos can be addictive and hard to get off, but if they are helping you live your life then who cares. It took me a long time to come to terms with this, believe me. These meds are used all the time for lots of conditions and people find success with them, don’t become “addicts” and end up on the streets, and don’t need escalating doses I have been suffering for 2 years now and I can personally say if a benzo helped me, I would be thrilled (if anything helped me I would be thrilled). I never in a million years felt this way, as prior to my MAV diagnosis, I would barely be willing to even take an advil. I have prescribed benzos many, many times and they really do help patients live their lives to the fullest.
This was written with much understanding and a great desire for all of us to get well with whatever will help us:-)
Hi Tammy,
We posted at the same time, and I just read what you wrote…
NICELY STATED SISTA!!! I COULDN’T AGREE WITH YOU MORE, but it did take me suffering for a long time to come to terms that for me, I need meds to get me to live life again.
I am glad zoloft is helping you a bit and I really wish you continued progress.
I have been suffering for 2 years now and I can personally say if a benzo helped me, I would be thrilled (if anything helped me I would be thrilled). I never in a million years felt this way, as prior to my MAV diagnosis, I would barely be willing to even take an advil. I have prescribed benzos many, many times and they really do help patients live their lives to the fullest.