New - 4 years in. thoughts please? working lying down - want to be up!

Hi all,

How I didn’t find this forum in the last three years I don’t know.

4 years ago I was at my desk at work and I started feeling really sick. I went home and half way home (I walk) I lost bits of my eyesight and realised I was in for a migraine. My play station arrived that day, and I never played it, as it just made me too sick. It’s gone now!

Anyway. I went through a year of being fobbed off by my GP ‘it’s just a headache’ and trying the things for labrynthitis etc. Nothing worked. I read around a lot, and finally came upon an MAV article. I recalled that as a child I had been prescribed Pitzotifen for migraines, so I went back to my GP and demanded those. I also managed to get a neuro appt at the same time, and he OKed me up to 3mg Pitzotifen.

I went from being barely able to function, to being mostly ok. I still woke up with a ‘hangover’ every day, and would have relapses about once a month, but I could function mostly, but I still couldn’t work sitting at a desk, and I couldn’t do groups of people. I work from home lying down. I’m a student right now, but my PhD will finish in a year and I’ll need a job.

I decided to get a new referral and went back to the headache clinic where I was seen once and discharged (I’ve gone back!) but he told me to cut out caffeine, which I have, and it’s got rid of the ‘hangover’, and I’ve only had two relapses in a year, but i STILL can’t work sitting up. Nor apparently, can I watch Star Trek in 2D (went to see it Friday, felt very sick).

I am still on 3mg Pitzotifen (going up to 4.5 didn’t improve anything) and have tried Topamax, which made me forget words and didn’t provide anything extra over the Pitzotifen. I also tried nortryptiline, also nothing. I’m currently on Propanolol at 160mg a day. It’s also not giving me anything over the Pitzotifen, but I only upped from 120 to 160 a week ago, but it is meaning that I am struggling to run so I’m not the happiest about that. Next on the list to try is Gabapentin according to my headache clinic letter.

I’ve also got tinnitus, and over the last year have had several ‘drop attacks’ the last 12 months haven’t been so bad, but the previous six were worse, where gravity’s centre moved and I ended up on the floor as everything was set to 45 degrees. This last 12 months I’ve just had attacks where i WANT to sit. But I’ve lost my driving license as a result :disappointed: I’m on serc now. it’s been 6 weeks since my last drop attack.

Aside from this, I’ve got ‘basic functioning’ down, but i need to be able to sit at a desk. Does anyone have any thoughts? :slight_smile:

LJ

Can you use a standing desk? Yes I know thats wishful thinking given dizziness. How are finding Serc? Has it helped?

That would make it far worse unfortunately. I need my head supported and to not have to move it between keyboard to screen.

The serc hasn’t made any difference to the normal vertigo. Whether it’s affected the drop attacks or not, I don’t know. I don’t think so, but I can’t be sure.

Try Theraspecs. I assume when you are working you are looking at a computer. I just came across these six months ago after three years of hell and it has made viewing the computer screen a bit more tolerable. Wish these would have been recommended to me by any of the neurologists I had seen, but unfortunately most the gains I have made have been through my own research or suggestions to doctors.

Also recommend you see Dr. Timothy Hain in Chicago. He is great and even though may generally suggest similar medicines trials, he is the expert and can explain your condition and provide treatments tailored to your person.

If you see Dr Hain and have to fly there ( I’m from Texas) do you have to do all returning appointments in person or can some be over the phone?

They told me I had to see him at least every 2 years. I don’t think he does return appointments via the phone or Skype. However you can send him emails through his assistant and he generally returns them every couple days. It is trial and error with the meds so after an initial evaluation there is not much to do/evaluate but see what works.

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Can you also consider Botox? That is the next step for me! I live in Austin TX and see a neurologist that specializes in Vestibular Disorders with a major university and he recommends this next as I am still getting low level symptoms quite frequently while taking Topamax and Elavil.

Hi Lee, who is the neurologist you see in the Austin, TX area? Is he knowledgeable in MAV? thanks!

L_J saw this and thought of your post:

https://youtu.be/DO6HtBBdK8A