Having a rough day

My husband left for a trip today, and won’t be back for another 11 days. He’s an astronomy grad student, so he often has to go to different telescopes around the world. And not long after he comes back from this trip, he’ll be leaving again for yet another one. Both these trips are out of the country this time, so it’s not like he can fly back within a few hours if something were to happen.

My anxiety goes through the roof with my husband gone. I am not working right now, and I have no family nearby, so I’m basically on my own all day, and it just plain sucks. One of the last times he left, in June, was when I woke up with a massive panic attack and ended up at the ER at 4am (fortunately, he was coming home that morning). I was also alone during my very first vertigo attack 3.5 years ago, when everything was spinning so fast that I literally thought I was dying. And of course, all the anxiety of being alone just makes my MAV even worse. Can you tell that I do not like being on my own?

I also had to go out today to pick up our CSA farm share, and I got super dizzy and lightheaded while there. I had to sit in the car for a while, calming myself down, before I drove home. And I know that some people feel better while driving, but I am definitely NOT one of those people! I only drive myself if I absolutely have to.

Sorry to vent like this, but I’m just not in a very good place right now. I am not looking forward to the next week and a half.

I’m so sorry to hear that you’re having a tough time. I hope that the next 11 days go by quickly. It is difficult. I am very independent, but found myself sobbing the whole time my husband was away in Italy (for a wedding which I sadly missed) a few weeks ago. It was mostly difficult because my husband is able to calm me down and he is so hopeful about my prognosis, etc. I wish you all the best.

I can absolutely relate to how you are feeling. I am terrified myself to spend time alone. It’s frightening feeling dizzy and off when it is only you. I hope the time passes quickly for you. We are here for you!
Lisa

Hi Cassada,

Sorry to hear you’re having a rough time like this. Can I ask what meds you’re on currently? Sorry if I missed this. You sound like a very good candidate for an SSRI actually. The symptoms you describe are exactly where I was 5 years ago – fear of being alone, unable to drive, dizzier doing things all the time and lots of panic. Your situ really sounds like MARD (migraine anxiety related dizziness) and SSRIs seem to do the job well in such a case.

Hope you feel better.

Scott

Scott,

I’m not currently on any meds, although one doctor did mention Zoloft after my panic attack in June. (I tried topamax a long time ago, but did not like it at all). I’m following the Heal Your Headache plan right now and trying out the migraine diet/going off the birth control pill for a few months, and seeing how that works for me. I’m generally very wary of medications (I’m a natural, organic type of girl), but will consider it if I feel I have no other options. Right now I think that therapy might be better for me than anti-anxiety medication, because at least that might get to the root of my issues, rather than just throwing drugs at it.

I posted my story a few weeks ago, but basically I started out with a few months of BPPV, which progressed into almost daily MAV that I’ve lived with for about 3 years now. I never had anxiety or panic attacks before my first vertigo attack, but my health issues have made me very paranoid, anxious, and depressed. I was so scared when my first vertigo attack happened, that I think my body now freaks out at every little twinge, which is part of why I don’t like being alone (I’m afraid that something even worse will happen to me). It’s such a vicious cycle: my vertigo caused my anxiety, but now my anxiety can make my vertigo worse. I don’t know how to break the circle.

Hi Cassada,

I’m sorry to hear you’ve been dealing with this for 3 years. That’s not good.

Your BPPV was very likely the first symptom of your migraine condition if you hadn’t experienced it before. The evidence shows that migraine is the most common cause of BPPV – more than 3 times that of any other cause. This applies in what they call “idiopathic” cases, or in cases where an obvious cause is not present like a blow to the head.

I’ve brought this up in discussions here before but I wanted to say something about pursuing only the “natural” route and wanting to avoid meds. I really hate to hear of someone suffering for such a long time when an effective med could be right there waiting to be found. It’s important to note that medicine (or a drug) either works or it doesn’t regardless of its origin. In my book there is no such thing as “alternative” or “natural” medicine. Imagine if there was such a thing as a “natural mechanic” or an “alternative pilot”. No one would get on the plane! If something has ever been found in plants or herbs that was effective it has been taken up by medical science, refined and used to treat disease (aspirin for example and many other pharmaceutical drugs). If there is no effect then it is not used or pursued further.

I think your choice to attack this first by making lifestyle changes is right on track. Any migraine specialist worth his salt will tell you that the diet needs to be adjusted first (see the post by Steve Rauch under “MAV FAQs – answered by Neurologists”) for example. Some others suggestions from Dr Rauch:

— Begin quote from ____

  1. Regular schedule – every day should look like every other day; regular meals and don’t skip; regular sleep and enough of it; some regular exercise (even if it’s just a walk to the end of the block and back again).

(2) General medical “tune-up” – migraine symptoms are more likely to flare if there are other medical/physiological stresses on your system. Migraineurs should work with their other medical professionals if necessary to get control of other health problems, such as allergies, thyroid, blood pressure, blood glucose, hormones, etc.

(3) Migraine diet – avoiding all of the well known migraine triggers.

— End quote

You might be more comfortable using something like St John’s Wort (prescribed by some doctors) for your anxiety or depression, for example, because of it’s seemingly more natural qualities, however, I can tell you from personal experience that while it does have an effect against depression and anxiety (backed by scientific evidence as well), it was a “dirty” drug for me. It caused terrible headaches and also strange uncontrollable muscle spasms on my face and pain in my joints. Paxil, on the other hand, is doing the same job at keeping my head steady and there are NO side effects. Given the option, I wouldn’t touch SJW with a barge pole ever again. I should note that I had to go through every single SSRI to find the right one and it looks like Paxil is it. You may find, like me, that you only need a small amount of a particular SSRI to gain a foothold or stop it altogether.

Lastly, I don’t mean to sound presumptuous but I know almost too well where you’re at; it sounds very clear to me. I was in the exact same boat as you (even had BPPV attacks). I toughed it out for about 4 months without meds not wanting to touch any drugs until I couldn’t handle it anymore. All the while my girlfriend at the time (a naturopath) was pouring herbal teas and homeopathy down my throat on the hour. None of it did anything of course. Then I got onto Cipramil and BAM, it brought me back very quickly and stopped the suffering (tons of dizziness and anxiety). The thing is, as long as you have anxiety hanging around and as long as your nervous system is charged like it is now, the evidence shows that your dizziness will just go on and on. Anxiety must be conquered to get past this junk and arrive at a manageable space. Part of your anxiety is likely being generated directly by MAV too, on a purely physiological level. When I am hit with the physiological stuff I ride it out with valium and it stops within a day or two even when attacks seem like they are monsters (thanks Lisa for making me see this more clearly).

You could also have a go with some CBT first to see if you can get around the anxiety this way. I’ve never come across anyone, however, whose MAV improved with CBT alone. Please have a read of this paper too on MARD and see if you relate to it:

http://mvertigo.cloudapp.net/t/migraine-anxiety-related-dizziness-mard/451

All the best … Scott

ps. you could also try throwing vit B2, vit B12 and CoQ 10 at it. There is some evidence for their efficacy. For the anxiety you might try 5HTP or SAMe. Some claim they are great but I found SAMe made me more anxious and 5HTP left me completely knackered hours later. Marci got the same negative effect.

Thanks for all the info Scott! I really appreciate it.

Yeah, I’ve heard that BPPV is often the first symptom. Fortunately, I have headacheless MAV. I generally only get a bad headache due to weather changes, which is only every once in a while, and I can sleep them off.

I wasn’t trying to attack the use of medicine for treating MAV. I have no doubt that using medicine can be extremely helpful. Heck, when this first started and I was in my last semester of college, I took valium all the time just to be able to sit through my classes. What I meant by saying that I’m natural/organic is that I am now trying to fix everything else in my life before I try other drugs, instead of trying medicine before trying lifestyle changes. For me, this includes the migraine diet, eating a highly organic and unprocessed diet, going off the birth control pill (which I’ve been on since two months before my first BPPV attack, for medical reasons…I just stopped it a couple weeks ago), using natural products (shampoo, soap, cleaning products), and getting other health problems under control. Around the exact same time as my MAV started, I also became hyperthyroid. I took a radioactive iodine pill to kill off a good chunk of my thyroid, and now take thyroid medication for my hypothyroid. I have recently come to believe that my MAV is at its worst when my thyroid levels are not normal. Unfortunately, I still have had a difficult time keeping my levels stable. I am seeing an endocrinologist next week to talk about my thyroid and its relationship to MAV. Do you know if there is a big connection between the thyroid and MAV?

I’ve personally never tried alternative medicine or herbs or anything like that. I know that these natural products and herbs can have side effects just like medicine, and I too wonder about their effectiveness. The only vitamin I really take right now is vitamin D (although i don’t take it too often, only when I don’t get much sun, since I haven’t found a version without gelatin). I will definitely take a look into those other vitamins you mentioned.

The reason I think therapy might help me a bit is because I’ve developed a lot of irrational fears since my MAV started. My first BPPV attack, I was alone in my college apartment, and I was so scared that I was dying and no one was there to help me (I was fortunately able to practically crawl over to my boyfriend’s (now husband’s) apartment across the hall for help. But with my husband gone on all these work trips, I worry about something even worse happening to me, and him not being here. My first attack started slowly, with just a little twinge and then bam I was slamming into walls and spinning so fast. Now any little twinge of something being off in my body, and my anxiety goes sky high. It’s issues like these, that I think therapy might help a lot with, and maybe keep me from having panic attacks. Unfortunately, therapy is not exactly cheap, so I sadly might not get to try it for a while. I definitely agree, though, that I will never feel fully better until I get my anxiety under control. This line from the article: “In plain English: migraine, vestibular and anxiety neural pathways intersect in the brain. If one is stimulated, the others are impacted”. This is me in a nutshell.

I should mention, another reason I’m wary of starting any medication right now is because my husband and I are probably going to start trying to conceive soon (which is another reason why I was willing to go off the birth control pill). I don’t want to start something just to have to stop it again.

Hey Cassada,

Glad you have a definite pathway worked out. Sounds like you have a good and sound working plan in your head about what to do next.

The anxiety is really an interesting but hugely annoying (mostly miserable) manifestation of MAV. Over the years I’ve compared it to many other people with anxiety resulting from differnet types of trauma. It’s all the same result and can easily turn into a post traumatic stress disorder. Believe it or not but I can almost guarantee you that with some work (seeing a psych to help perhaps) you will one day get to a stage where even if you feel anxiety taking over, you won’t react to it any longer and will no longer fear it. It’s like you begin to understand what it is, that it’s not really you, that it’s just a side dish with the MAV main, and that it can never hurt you. When you really get that, your fear of it will vanish and it will no longer affect your decision making. As a bonus, the dizziness will die down too. It then becomes a matter of just drowning the uncomfortable physiological feelings with a benzo while it burns itself out should it rear its ugly head.

I was so anxious in the early days, however, that I absolutely needed a med to give me a break and create an opening to get my head around what was happening and understand what the anxiety was and how I was fuelling it. I simply did not have the resources or energy to get a grip no matter how hard I tried. In those days, no amount of therapy would have helped. It was like being dangled over an open fire trying to keep cool all the time. Impossible. To make matters worse, I didn’t know what MAV even was then so I had fear of my never-ending dizzy condition that wasn’t improving plus fear of being anxious going on all at once. A nice little disaster cocktail.

Yup, the MARD article nails it I think. If one of those things go off in the triad, so do the others. Your really lucky you don’t get much in the way of head or neck pain from this. That’s a real bonus.

Hope the dietary changes help out. Definitely try those supplements. I forgot to mention magnesium as well which is a proven migraine killer. Have a search of the forum for these. I posted some science papers on them months back.

Best … Scott 8)

Scott,

just wondering - do you think that those who have MARD also have MAV or is it either or. I am beginning to think that SSRIs might be more helpful if you solely suffer from MARD - but I don’t know at all.

Scott, thanks for your thoughts on anxiety. I totally agree that it is like post traumatic stress disorder. Fortunately, I have been able to recently realize how irrational my anxiety is, and I am at least able to usually calm myself down a lot faster when I do have panic attacks or if my MAV is really bad.

I think that having mostly headacheless MAV is both a blessing and a curse, in a way. I was diagnosed with MAV a long time ago, but since I never had the traditional headaches, I never really believed my diagnosis. No doctors ever explained to me about what migraine really is, and how it doesn’t always come with a headache, or how BPPV is often a precursor to MAV (including Hain, I’m sad to say, who was the one who helped diagnose me. He just threw a topamax rx at me without much explanation). I suffered for a long time believing that I was some sort of anomaly that was diagnosed with MAV because they didn’t know what else it could be, and I was without hope. Fortunately, within the past few months I have come to realize that what I’ve been experiencing really is migraine symptoms (the constant dizziness, the sensivity to lights and crowds, etc), so at least now I can have a game plan to getting better. It’s just sad to me how little is known about this disorder, and how little awareness of it there is.

Btw, do you know why BPPV is often a precursor? I started with full blown BPPV in springtime, felt fine for a good part of the summer, then it wasn’t until the fall that my MAV started (during that fall is also when my hyperthyroid started, althought that wasn’t diagnosed until the next spring, when my resting heart rate was over 100). Then my MAV continued even after my thyroid was fixed. Fortunately, I have been able to control my BPPV without the vestibular exercises, which made me feel awful (I just don’t go on roller coasters, or do somersaults, or hang my head upside down :slight_smile:

Lisa, I am wondering about that too. My guess is that MAV develops into MARD? I never had anxiety before my BPPV and MAV happened, but now my anxiety and MAV definitely play off each other.

Hi Cassada,
I just wanted to add that I can totally relate to your questioning your diagnosis because of a lack of migraine headaches. I have been suffering with MAV for over 20 months, but did not receive this diagnosis until about 5 months ago. I didn’t have even the slightest headache for the first year of my 24/7 dizziness, and now I get headaches all the time and even had the lovely experience of a few full blown migraines. In some ways, I felt more reassured that my diagnosis was correct but I would absolutely rather not have headaches on top of the other suffering. My point being, I think you should be thankful that you don’t have to deal with a head that hurts :smiley:

Hope you are holding up okay.

Warmest,
lisa

MAVNY,

Believe me, I am so thankful that I only get the occassional weather-related headache! In that respect, I do feel really lucky. All I’m saying is that for people like me who dont get the headaches, it can be a lot harder for doctors to diagnose our dizziness, or for us to believe that we really have MAV.

— Begin quote from “cassada”

My husband left for a trip today, and won’t be back for another 11 days. He’s an astronomy grad student, so he often has to go to different telescopes around the world. And not long after he comes back from this trip, he’ll be leaving again for yet another one. Both these trips are out of the country this time, so it’s not like he can fly back within a few hours if something were to happen.

My anxiety goes through the roof with my husband gone. I am not working right now, and I have no family nearby, so I’m basically on my own all day, and it just plain sucks. One of the last times he left, in June, was when I woke up with a massive panic attack and ended up at the ER at 4am (fortunately, he was coming home that morning). I was also alone during my very first vertigo attack 3.5 years ago, when everything was spinning so fast that I literally thought I was dying. And of course, all the anxiety of being alone just makes my MAV even worse. Can you tell that I do not like being on my own?

I also had to go out today to pick up our CSA farm share, and I got super dizzy and lightheaded while there. I had to sit in the car for a while, calming myself down, before I drove home. And I know that some people feel better while driving, but I am definitely NOT one of those people! I only drive myself if I absolutely have to.

Sorry to vent like this, but I’m just not in a very good place right now. I am not looking forward to the next week and a half.

— End quote

I understand completely your fear of being alone as I have and still do experience that from time to time. Do you have any friends that could come and stay with you . The other thing I do is I always have the phone nearby , I guess it just makes me feel more at ease.

Wanted to see how you are doing? Hope this week is passing fast for you.

— Begin quote from “cassada”

Scott,

I’m not currently on any meds, although one doctor did mention Zoloft after my panic attack in June. (I tried topamax a long time ago, but did not like it at all). I’m following the Heal Your Headache plan right now and trying out the migraine diet/going off the birth control pill for a few months, and seeing how that works for me. I’m generally very wary of medications (I’m a natural, organic type of girl), but will consider it if I feel I have no other options. Right now I think that therapy might be better for me than anti-anxiety medication, because at least that might get to the root of my issues, rather than just throwing drugs at it.

I posted my story a few weeks ago, but basically I started out with a few months of BPPV, which progressed into almost daily MAV that I’ve lived with for about 3 years now. I never had anxiety or panic attacks before my first vertigo attack, but my health issues have made me very paranoid, anxious, and depressed. I was so scared when my first vertigo attack happened, that I think my body now freaks out at every little twinge, which is part of why I don’t like being alone (I’m afraid that something even worse will happen to me). It’s such a vicious cycle: my vertigo caused my anxiety, but now my anxiety can make my vertigo worse. I don’t know how to break the circle.

— End quote

I have been unable to tolerate any medications so far and just got of the medication merry go round last fall. I take a very low dose of valium everyday and that seems to keep me at a baseline that is tolerable but by no means is a cure.

I have been on the diet for almost a year now and for me it has made a difference.

The other things that I have found that have made a difference is ,

  1. Making sure I go to bed and get up at the same time everyday. Very important.

  2. Drink plenty of water

  3. Eat 5 to 6 small meals a day instead of three big ones

  4. Keep a diary …try and figure out triggers…avoid them mine are…
    A. Scents
    B. Chemicals
    C. Weather …cannot change
    D. Certain foods stay on the diet all the time for me it works.
    E. Stress

  5. Exercise a little bit…still working on that

  6. Get you Vt D level checked mine was very low when all this started.

I like you have the anxiety and the panic…and I am learning to work through those times but it is very tough sometimes .

Please keep us posted how you are doing…I hope you have better days ahead.