Symptoms keep progressing - so scared

My sxs seem to be progressing with each passing day. Leaving the house is out of the question, as it is nearly impossible for me to walk around my home. The rocking is just so very violent. Even walking a short distance to the restroom is such a huge task for me. With passing time, I have so much more dizziness in my head (if that makes sense). I am unable to sit down comfortably at all. This sx has been progressing during the past year. I feel constant spinning in my head. It feels as though someone shook my head a million times and I am left with the aftermath of that 24/7. Can others relate to this? It is impossible for me to have a conversation with even one person. Something as simple as someone blinking throws me off more.

And, I feel so very flu-like. Since the start of this, I feel flu-like on and off, and now it is relentless and so extreme.

Do others have sxs 24/7 for years? I keep on reading about people having good and bad days of this. I just cannot believe how relentless this has been for me for so many years. Wish I had just a few good days.

I’m at the point where I’m just so scared. I cannot believe that my body hasn’t functioned as it should for so long. It makes me worry that something more serious is wrong (I know that’s probably not the case), but this illness makes me feel as if I’m dying - that’s how sick I feel. My rational self knows that it makes sense that things are even getting worse. I am pregnant, not on any medication, and I’m sure my anxiety and depression cannot be helping at all, as the recent article that Scott posted illustrates. Sorry for such a sad post. Just wondering if others get scared that this is something else more serious and how you convince yourself that you’ll get better one day and this is just a really awful migraine, although it feels so much worse. And, do others suffer this badly day in and day out?

To end on a brighter note, I see Dr. Bernstein next Monday, and hopefully I will have a plan in place for after I deliver. Right now, I am leaning toward taking Nortriptyline. It seems like success rates are high on it. I took it last year, and had difficulty tolerating it and only got up to 20mg, but this time I will stick with it for sure. I will see what Dr. B has to say. I sure hope she’s familiar with this illness.

Hi Lisa,
I am so sorry you are feeling so poorly and as you know I too suffer 24/7 symptoms without any “good days” or “good hours” or “good minutes”. I never have even a moment where I forget that I am so sick. The only thing right now that keeps me from losing all hope is that I am on a med trial. I can understand how things might actually be worse with your pregnancy and lack of any meds in your system.

I wish there was more I could offer. Hang in there as best you can and let us know what Dr. Bernstein says. Maybe there is something she can offer you with regards to meds that can at least ameliorate your symptoms a bit.

All my best,
Lisa

Thanks so much, Lisa. Sorry to write such a blah post. I know that we’re all going through this. I just know that all of you understand. I am so thankful for this support. I will let you know how appt goes (just don’t want to get my hopes up), and please let us know how you do on Friday.

Lisa,
Your post was not “blah”… you feel “blah”… that’s what this forum is here for… I am glad you are reaching out. As you know, I can tell you now how my appointment will go on Friday :lol: but of course will report back nonetheless.

Best,
Lisa

Hi Lisa,

Sorry your symptoms have increased. I certainly know where your coming from. I’ve been trying to manage this condition for 17 years. The good part is things do improve but for me it’s been slow as a snail’s pace…but still going in the right direction. Back in the 1990’s things were very bad for me…lots of vertigo, lots of continious rocking motion…much of the motion is felt in my head and so i called sick at work on numerous occasions… plus 2 short term disabilites. I was beginning to question if i was going to be around very much longer. But my doctor at the time recommended a benzo because all the anti-depressants did not work for me. The Xanex was a life saver and it helped to decrease some of the motion with less vertigo. Some people have concerns about addiction but all i know is that i wanted some of my quality of life back so it helped. Definitely no cure…but atleast i could go to a movie or visit with a friend if i wanted. Without that med i would be homebound. I don’t know if you have tried medication of this type? Also…my diet has helped me. There is no way i can go back to drinking lots of coffee, chocolate, alcohol, msg, etc. Also…i cannot tolerate a very stressful job…the work i do now has it’s stressful moments but this job gels well with my strengths. Also…i can only work part-time. My previous job in the 1990’s…i worked for the phone company and the stress was very intense.

I have a suggestion…write down a list of things you would like to try…including medication. Each time you try something and if it does not work scratch it off. I dont’ know if your watching your diet…but sometimes a diary can help.

I sure hope you get to feeling better soon!

Joe

Thanks, joe. so sorry you’ve been sick for so long. I tried valium at the beginning with zero success, and also klonopin with no benefit. I am pregnant and due in Feb. Will most probably go onto Nortriptyline at that time. I have a detailed record of all the meds I have tried. Have you tried other meds besides benzo and antidepressants.

Lisa,

So sorry to hear how difficult it is for you. I know two other woman with MAV, neither of them has ever had symptoms as badly as we do. That’s not to say they are not miserable.

Hopefully, there will be a med in your future that will help. Dealing with this is so difficult. Keep writing as it is truly theraputic.

Sally

Hi MavLisa

I have to say YES to everything you describe.I too have trouble just walking around the house nevermind outside. I have felt disorientated,off balance etc every single second of every hour for nearly 2 and half years it is absolutely relentless (24/7). Everyday is hard and some days are even worse.It is one big endurance test. I start my migraine treatment soon and hope and pray I get some relief. Do not feel bad abount ranting, I rant all day long about it,my friends and family are sick of me. It is hard not to feel down and scared as the condition is so awful all of the time.

Y’know we have got this far. We have had to put up with it for so long and endured everything it has thrown at us and we are still here,alive and kicking.

We all have to battle on and hopefully one day soon we can all feel magnificent again.What a fantastic day that’ll be hey!

I wish you all the best

Hi Lisa,

It’s small consolation I know but I too have felt as bad as you are. As well as feeling physically awful I was just amazed that I could feel that bad and not be dying. And yes, I too was getting worse and worse each day, which was also just incomprehensible. It’s pure, utter misery.

Having said all that, I’m now up around 80-95% most days. Things started to slip recently so I’m upping the Prothiaden which seems to be working. I’m now up to 100mg. I’m supposed to go up to 150mg but the titration left me so whacked last week that I’d holding off.

So please don’t lose hope Lisa. You’ll find the right drug for you. Things will improve.

Best,
Victoria

Sally - thank you so much. you’re right - it can be therapeutic to express my feelings on here. just don’t want to get others down, as I know we’re all suffering.

Jay - lots of luck starting your migraine treatment. do you know what type of treatment that will be.

Victoria - thanks for sharing that. it is so hopeful to read such positive posts. I hope you get to 100% soon. Even though even 20% better sounds great right now, I’m sure once I start getting better that I would want anything to be 100% again. I wish you well.

Victoria - I forgot to ask you (forgive me - I do not remember your specific story) - was it the meds alone that helped you? Was this the first med you tried?
I haven’t heard of Prothiaden. I don’t think it’s used in the states, or at least not commonly used for MAV. that is wonderful that you found something that works.

Victoria - I don’t seem to be able to collect all my thoughts at one time. I just looked up Prothiaden and notice that it’s another tricyclic. do you know why your doc gave you that over nortriptyline/amitriptyline. the tricyclics seem to be very effective for this illness. how are you doing with side effects?

My bad sxs (like those you’re experiencing right now) lasted only for a week or two after my ‘attack’. I’m sort of at a stand-still right now. I’m at about 70%, these days.

I wonder - is it possible that you might have the flu or be suffering some other kind of virus? Have you checked your temp lately?

Hey Lisa,

I’m just at work on this side of the rock and saw your post. I’m so sorry you feel so bad with this. I’m REALLY glad you will be seeing Dr Bernstein next week. I’m very certain she will know what is going on with you and will be very helpful –- She’'ll know that migraine can cause all of this trash. She and Rauch know each other and I was reminded yesterday when I reread Rauch’s post of the following:

"… remember that 25-35% of women between puberty and menopause meet strict International Headache Society (IHS) criteria for migraine headache, and that [size=130]25-35% of migraineurs have migrainous dizziness or vertigo[/size].

That’s a lot of dizziness. I wish there was more that I could offer but from an objective stand point, the fact that your pregnant etc has got to be why things are so off the charts at the moment. I think listening to Victoria’s case too shows you that there is light at the end of this tunnel.

Hang in there champ and know we are all here to lean on any time.

Scott :slight_smile:

ps. wanted to add that I have most definitely had the pseudo flu-like illness feeling from this numerous times. I think it’s safe to assume it’s part of the migraine spectrum. Makes you want to take it out the back yard and shoot it a few thousand times.

Hi Lisa,

In Australia Prothiaden also goes by the name Dothep - do you have that in the US?

Dr Halmagyi (Australian expert on MAV) uses Prothiaden. He reckons it’s not very good as an anti-depressant but is effective for MAV. I’m not sure why he chooses it over other meds.

It took a few weeks for it to kick in for me but I got up to about 90-95% wellness, which is pretty good in my book. Started to slip back over the last few weeks so am upping the dose. Halmagyi wants me to get to 150mg and I’m currently on 100mg (was previously 75mg). The first few days at 100mg I was pretty zonked out (which I wasn’t, or didn’t notice when I first started). That seems to have settled down (but I haven’t gone up to 125mg yet). Other than that I haven’t really noticed any side effects. Fortuitously I was on it 15 years ago for depression (along with Aropax/Paxil) so I know I tolerate it well.

I believe a lot of the US docs aren’t fans of Prothiaden, describing it as a “messy agent”. But it seems from this board that everyone has wildly different experiences with meds, so if it works, who cares right?

I really hope things start to pick up for you soon.

Victoria

Lisa,

I think Scott is very correct in saying that you are probably feeling even worse now that you are pregnant because your hormones are off the chart right now. I know you had hoped that this would have been a plus for your circumstance but I think it just was not for you for whatever reason the hormones of being pregnant and MAV have really clashed with you.

Hormones alone can do very strange things to your body especially during peri and menopause and I am sure that is also true for pregnancy , ie I was sick as I could be with my first child and I mean the whole nine months . I stopped working at about seven months I was so sick…**.but I was sick from day one with flu like symptoms and nausea that was over the top.
**
Now throw the MAV into the mix and I am sure you feel awful but your day will come when you can find the right treatment for this and it will get better.

I so hope that Dr. B can at the very least put your mind at ease that there is an answer to all of this and she may be able to help you with some issues while you are pregnant.

Write down all your questions you have and ask about things to ease your pain now and see if she can come up with something to help you.

You have got to continue the fight as hard as it is…remember how sick Nance was until she started getting better…you will get there too…you have to keep telling yourself that…think positive…I know it is hard…trust me I do… but don’t give in to it…don;t give up on yourself and the life you want to have…you will get there…

— Begin quote from ____

I feel constant spinning in my head. It feels as though someone shook my head a million times and I am left with the aftermath of that 24/7. Can others relate to this? It is impossible for me to have a conversation with even one person. Something as simple as someone blinking throws me off more.

— End quote

I definitely can relate to that Lisa. It is so difficult to describe the feeling though, isn’t it? I can remember years ago when even the dog wagging her tail would thow me off balance! At first that inner head spinning was 24/7 but now it comes and goes, sometimes for days, sometimes for weeks. But it is absolutely horrid, I hate the sensation. It makes concentration of any sort really hard work, if not impossible. I don’t have any answers really but wanted you to know you’re not alone in experiencing this particular symptom. And with all my heart I wish you easier days ahead, you’ve had it so hard lately.

Brenda

Thank you for everyone’s support yesterday. It is nice to know that there are others that understand this madness, but I sure wish we weren’t all in this boat (literally and figuratively). I keep on waking up before 6 in the morning and cannot fall back asleep as my mind keeps on going, wondering how I’m going to accomplish the simple tasks of each day and function in the future. I hate waking up each day to this, but that’s my life for now and I have to have hope that things will change in the future. That’s really the only way that I can keep on going with this.

Brenda - yes, something as simple as a dog’s tail wagging would surely throw me off. This sensation is so hard to explain like you said.

Timeless - you are so right - I cannot give up. Sometimes I want to, but I have to remember that this is curable and I’ll enjoy my life again one day. hope that’s sooner rather than later, as I get more and more discouraged as time goes on. I have to be strong for this baby. Fortunately, for me, the pregnancy is going very smoothly - I hardly even think about the effects of pregnancy as they are so minimal to me compared to everything else. I’m sure if i didn’t have this illness, I would be complaining about pregnancy symptoms, but I don’t even notice them now. Plus, I think I’ve been blessed with a pretty easy pregnancy, except of course it’s impact on the migraines,.

Victoria - I haven’t heard of that drug being used here, but perhaps it is and I don’t know it. I know hain thinks that tricyclics are “messy agents,” but most other neurologists that I saw use it as their number one drug for this.

Scott - the flu-like sxs are so bizarre, but I suppose this is all so bizarre. I’m sure many have vertigo with migraines, just wonder how many people have these chronic cases. Probably a lot of misdiagnosed folks out there.

Hi Lisa,

Sorry the klonopin or Valium did not give you relief. I’m being honest with you…without Xanex i don’t know what would have happened to me back in the 90’s…it really gave me some help so that the dizzyness/rocking motion was less than normal + less vertigo. By the way as i told you …i have maybe one or two small vertigo episodes per year…they general feel like a half spin and guess what happend two nights ago? I woke up at about 2 in th emorning with a small half spin of vertigo. Then of course it messes up my equilibrium but atleast i don’t vomit like i use too. Use to become so sick after spinning. I had purchased some turkey hot dogs and ate a couple so i think that is what brought on the vertigo. The ingredients didnot mention MSG but god only knows what the maker puts in those hotdogs. Need to stay away from hotdogs. But after 24 hours i appear to be feeling somewhat better…knock on wood. By the way Lisa…i use Verapamil and it gives me a little help…but not alot. A small amount of Xanex and watching my diet are the best tools for me.

Wishing you the best.

Joe

Joseph - so sorry you had some verrtigo. that is very scary - I 've had it a few times. all the best to you.