As I type I feel a burning in my head (argggg) I’ll try to make this short. Since December 28, 2009 I have been going through complete hell. Pain reached an all new level; two weeks ago I was trying to make dinner and passed out, face numb, eyes jumping around, etc. I went to see my GP and she said that she didn’t know what to suggest because she didn’t want to “step on my neuro-otologist’s toes”. She is a witch because after 18 months of suffering with this and going to psychologists etc (according to her it’s all in my head!) I found and article in the newspaper about a lady with the same symptoms and self-referred to Dr. Surrenthiran. Anyway, I have been seeing Dr. S since November and he is great. The only problem is is that when I NEED to speak to him, it’s very difficult. He is busy, and his receptionist may or may not pass messages, depending on her mood. I finally got to speak to him (he called from car phone) last Friday and told me that he was going to take me off the Nortriptyline (EVIL EVIL stuff). I was up to 40 mg, moving up to 50 mg and my head felt like it was going to pop, when it took a turn for the worse!
He told me that he would contact my GP and have her write the prescription for Pizotifen because he is 100 miles away and my next visit isn’t until March (I can’t wait) Tuesday a.m. My GP calls me and tells me to take the Pizotifen AND continue to take the Nortriptyline…together??? I have left several messages for Dr. S to clarify this - but no joy…
Has anyone heard of taking Nort. with Pizotifen?? I am currently on 20 mg of Nort. and the Pizotifen is 0.5 mg. I just don’t want to overdose… + GP made it very clear that she wasn’t interested, even when I told her that I was now passing out.
I have only had 3 days of relief since December 28th… I can’t take much more.
Yes, you can take Piz and Nort at the same time. There’s no problem with taking these two drugs together. The only interaction is increased sedation.
If Dr S wants you off Nort, why not start titrating down and keep with the Piz? Your other doctor sounds like an idiot. Forget her and stick with the pro.
Cheers … Scott
Thanks for your reply. I have reduced the Nort. down myself. Honestly that stuff scares me to death. I have had nothing but grief since I took it. The WILD dreams & crying is too much to handle at times, not to mention the heart palpitations! I have read so many good things about Pizotifen so finger crossed that it works. I am going to change GP’s. A friend of mine suggested that I see her doctor. She said that he loves a good challenge (in that case I’d make his day!!) LOL Also said that he would test you to death. Sounds like my kinda Dr. Don’t get me wrong, I really don’t like going to the Dr’s at all, but at the end of the day I do want to get my life back to normal & willing to do anything to make it happen.
I feel like my GP has “marked” me - I could go in with a broken arm and it would be ‘stress’. She STILL refuses to accept that MAV is real. Thank God that I am hard headed enough to read, Google and refuse to accept her “stress” theory, otherwise I’d be in a worse place than I am now! Thanks again for your reply. Will take my 1st Pizotifen tonight… Fingers crossed.
I’m a long time forum member, came down with MAV March 2006 and I just wanted to let you know that I take Pizotifen and have been taking it since the onset of my MAV. I was up to .05mg x 7 tabs a day together with Clonazapam 2 tabs a day (can’t remember strength!). My MAV was so severe that I don’t think I really noticed any significant benefits from my meds for quite a long time and only tapered off the Pizotifen about 18 mths after onset. I’m now on .05mg x 2 tabs per day plus 2 1/2 tabs clonazapam daily. Now that my MAV has settled down, when I feel better, I’ve tried to taper off and have really noticed the symptoms worsen. When I increase the Pizotifen once again, I see definite changes within 6 days or so and real good changes within 4 weeks. But that’s because my MAV has settled down to a ‘manageable’ condition at this stage so with yours being so intense, I’m not sure if you’ll see real changes too soon…perhaps the tabs with the passing of time may help you, I really hope so. Incidentally, my neuo (he specialises in MAV too in australia), said that he doesn’t usually find that his patients notice any difference with Pizotifen unless they’re taking 2 tabs .05mg daily…so just thought I’d let you know.
I feel for you Dizzychick…I’ve been there. Hang in there, there’s light at the end of the tunnel (just hope it’s not too damn bright!!!)
I’ve heard they were good (pizotifen) except for weight gain. Im thinking that gaining extra weight is worth it if I can get my life back! At the moment I get zero exercise! I miss shopping, driving etc. Just being able to take a walk and get fresh air would be great! I will take them tonight and I hope and pray they work. I am really cautious about drugs, 5 years ago I had a MAJOR reaction to antibiotics and ended up in hospital. Anaphylaxis will bring life and death into a whole new light !! The fear is still there :? The old me would eat, drink anything, not think twice about meds, but now I am scared of everything.
Thank you all for your advice & kind words.
Hopefully we will ALL get passed this evil illness.
— Begin quote from "dizzychick"
She STILL refuses to accept that MAV is real.
— End quote
Either your doctor is incredibly arrogant or there’s just a spectacular amount of stupid going on. Putting all that aside, if you ever have the misfortune of having to see this person again, throw some evidence at her. Some scientific facts. If she still refuses to “open her brain” up, you’ll know you’ve been dealing with the village idiot.
- Migraine is a real genetic disease; a number of genes have been identified some working in isolation and others in combination.
- Approximately 36 million Americans are migraineurs – they have this genetic problem.
- Migraine and depression/ anxiety are highly comorbid conditions – they occur together. 47% of migraineurs suffer with depression at one stage or another compared to 17% of non-migraineurs.
- Following headache, dizziness is the second most common symptom of migraine.
- About 25% of people with migraine will have vertigo attacks and about 2/3 have visual motion sensitivity.
- Do the maths and you soon see that this is VERY common.
A subset of point 5 will experience this non-stop. The illusion of motion, tilting and bouncing is somehow generated in the brain and is not a mechanical fault but a chemical problem. Most patients with this sort of stuff going on come up as normal on neurological testing.
ps. Nortriptyline is actually a very good med for this condition for some people. Unfortunately one med does not fit all. Like you it was like having a rocket up my back side.
What Scott said.
But if that doesn’t work, here’s plan B. Punch this patronising, dismissive white coated imbecile of a GP in the face. Totally legitimate brain snap due to your “stress”. Sheesh!
Best of luck!
Hubby is saying noooooooooooooooooo That’s all I need is to get deported from the UK ! Thinking the plane trip back to South Carolina would do me in. I rang my friends GP and he is accepting new patients, so have an appointment next week. Even though Dr. S is treating me for MAV - It would be nice to have a GP that doesn’t act “off” with me everytime I go in for minor things. Would also be nice to have both Dr.S and GP on the same page!
When Dr.S called me last week he said that he wanted to test my hormones. I told him that I had a blood test a month before and he said that a blood test wouldn’t pick up on progesterone, that I needed a saliva test. I mentioned it to GP and she said NO. No excuses, just a flat NO. Was gonna go private for that, but maybe new GP will be willing to send me for one. Saving me £100.00 + a trip to London would be great. (MAV has also taken its toll on £££££ as well)
Again, thank you all so much for your replies. This forum has helped me a lot. Now I know that it’s not JUST me going through all of this. My daughter (13) and hubby are great, don’t get me wrong, but no one can fully understand this unless they have been there! My mom tells me to just get out and walk (I WISH!!!)… I feel like going through the phone and doing what Victoria suggested about GP LOL :mrgreen: I don’t bother talking about it to her really anymore. Anyway - my daughter just came in from school and hubby from work. (I’ve had a sneeky 2 hour nap!) So I need to attend to them.
My mom tells me to just get out and walk (I WISH!!!)
Bless her. I’ve had a few people say that to me years ago too. “Why don’t you get out more and do some exercise; that will cure this … you’ve been lying around dizzy for too long”. lol. Meanwhile I had been riding a mountain bike daily which, curiously, didn’t make me feel any worse back then. S
Sorry it took so long for me to respond, having a bad few days. Pizotifen has knocked me loopy! I feel tired all the time - hopefully that will pass. I slept 17 hours yesterday. Not done that since I was 18 !
I have decide next week to try and go on a detox diet, and start doing Yoga. I’ve been told that a Wii balance board and Tai Chi works… Might try that as well. I do need to get some exercise, but outside of my house is not an option at the moment…
Anyway - I am off to try and salvage what is left of the day. I JUST woke up again lol
Just read this and I get so angry when I read the ‘stress’ diagnosis!! My Gp said to me’ ‘here Ive printed this off you its a book thats says stop worrying start living’ I just goes to him Im worrying because Im not living at the moment Im exsisting as if you want to be down there all the time I never went before this ‘thing’ started.
I got a big lump on my eye the other week left it for a few days went down there and he goes ‘its a cyst its infected but you didnt really need to come here for this it will go by itself anyway’ so you get made to feel like your moaning over nothing when you go for something unrelated to dizziness .
I hope those meds work for you though sleeping 17 hours!! what was that like? xx
I have changed GPs. (this week) I NEVER went before this stuff started either. After all this our relationship was “strained” to say the least. Try and find a new GP if you’re not happy with your current one. Sleeping 17 hours was good, other than the fact that I now have my days and nights messed up I tossed and turned all night last night AGAIN & just now got up (it’s nearly 1:00pm here) I guess I will have to sleep till I get back on track lol
Staying up to try and fix it is not an option. I get bad migraines if I don’t sleep well + everything goes a bit “Alice In Wonderland” if that makes sense… :shock:
I have a look and see if I can find the book that you mentioned - I read ALL the time. That’s about all I can do at the moment.