Just an update from Meredith… backin Iowa now from Arizona. I had tried to go on effexor, and nori and am ON Verapamil, but that causes me grief with dizzy when I UP the dose. NOW, back here, it turns out my neighbor gal AND my daughterinlaw, both take effexor for anxiety. WHAT??? They both are on some big dose like 150mg. They said it made them dizzy for a little while but nothing too out of the ordinary and upped their dose easily. I tried to go on effexor, one third as Dr. Hain recommends and even THAT was impossible and made me very sick and miserable. Is it because I have MAV, that causes me to have such a hard time with taking medication? Neither my neighbor or daughter in law have anything wrong with them other than they were stressing about something and decided to have an antidepressant, Maybe it’s because I am a MAV’er? Seems others on this forum have lots of trouble getting happily on a drug. Any opinions. I am seeing Hain Mar 23rd and he might want me on Effexor. Why can’t I just take it like my neighbor did,. she loves it and has been on it for a few years and had NO trouble getting on it. ??? Meredith ( spinning Lady_)
As you know by now, we are not “normal” in the sense that our chemistry is highly sensitised. If you took your nails and lightly scratched your arm, it might feel good. But if you had a 3rd degree burn there, it would hurt like heck. Imagine your brain as “raw”…it’s super sensitive. Then you add these meds that target these receptors and it can feel bad…make things feel worse. After time, these receptor “downregulate” and grow accostomed to the new chemistry. Most doctors worth their salt will give patients some benzos like Valium, Xanax or Klonopin to get them through this adjustment time. Your neighbors probably just have some mild depression or anxiety, and boom…they take the meds and get better. These are not the people scouring the internet looking for answers. They are the majority…we, unfortunatley, are not.
With that being said, you can get better and you shouldn’t fear medicine in general. For us, we just have to start low…go slow…and use some benzos for the rough spots.
Thank you for helping me. I think I “knew” already, but it’s such an awful thing to admit to myself. I know everyone on this forum is having a hard, awful time and I am no exception. I have a son that is almost completely deaf. He had spinal meningitis when he was 2. He has struggled his whole life, mostly with social problems of not hearing and misunderstanding etc.etc. He has been on many forums for those hearing impaired. He is helping me with "HOW " to talk on a forum. I have never done it before. I want to hear about YOU and how you got mav, how did you know, what did you feel like, did you have violent vertigo attacks??? What have you done as far as pills and dr.'s and do you have children to care for? I DO care very much for all of “us” that have this MAV…boy I hate that word. Ihave never heard of it before Nov. Kelley, thankyou for caring enough to answer me. I just had a very unexpected vertigo “spin” only lasted a minute but scared me. and WHY. I am taking my verapamil and I had taken a small piece of xanax, as I got to excited with some visitors I just had. Still spinning a bit, so off the computer. nite. and thank you.
Kelley is so right - our brains are ultra sensitive - it took me four months to go from 10mg Notriptyline to 50mg because each time I upped the med it took weeks to adjust. Then I was getting racing heart & high temps so I switched to 50mg Prothiaden which didn’t have the same side effects,& then another 5 months to get to 75mg and another 3 months to reach 100mg and at last I’m feeling it’s really helping. So it was a long journey which, now, looking back was worthwhile to achieve some semblance of normality in my life. Like Kelley, I took Ativan (similar to Xanax, etc) to get me through the bad times and my doctor was more than willing to prescribe it.
We each have to ‘listen’ to our own bodies & go as slow as we feel necessary and eventually get to a place where you can get your life back. So sorry to hear about your son but he is obviously very caring & wanting to help you.
I couldn’t take Effexor either. I started on a low dose (cut the 37.5 mg in half) and did make it to the 37.5, but with horrible side effects. I was either horribly nauseated or was throwing up every day. My insomnia was awful and when I did sleep, I had very scary nightmares. I also started becoming severely depressed on it. I was on it a total of 7 weeks.
The next drug I was on was Topiramate (Topamax) and I could not tolerate that either. I was on it for about 5 weeks, but had to get off due to severe coughing day and night and horrible depression.
I am now on Citalopram (Celexa) and started at 10mg. I have worked my way up to 30mg. now, but haven’t noticed any positive changes yet. I have been on this for a total of 6 weeks, but have only been on the 30mg. for about one week. I am having some side effects from this (low libido, feeling very tired, fatigue) which I can handle for now, but if I don’t see some improvement soon, I will go off this one too.
Take care and I hope you find some answers soon.
I think I understand better that my “migraine” brain is no longer the same as it was. It has become, like Kelley said, like a 3rd degree burn, that anything unusual touches it, it reacts violently. That is why my friends can take effexor with ease and I can’t touch the stuff. You were on Effexor and Topamax? Wow, those are harsh and I cannot understand how some of our maver friends on the forum can stand to be on them and at high mg’s. too. I am on Verapamil 180 and have worked up to 210. I really have to go low and slow. We got 40 mg. tablets and cut them in forths and I add 10mgs. to my 180 slowly and now am getting ready to add another 10mg. and then will be 220. Would like to be at 240 and tried once with a 240 pill but got very sick.
How is the Citalopram ( celexa) working now? I didn’t know they were the same thing. I actually thought Celexa was for impotence??? What is that commercial I see on tv?? haha!! oh well. I tell you, I am new to all these drugs and all I know is I HAVE to find something that stops the dizzy. Verapamil has stopped my headaches completely. BUt, I’m still so very dizzy and getting worse, it seems. SO, next week, Mar. 23rd, I will be sitting in Dr. Hain’s office in Chicago and he will put me on something. Effexor, I’ll bet, as I hear that’s his favorite. I need something more gentle. Frightens me to think of side effects. How did you stay on a drug so long when you were having such harsh side effects? Also, do you have to wait a period of time when switching from one drug to another. Can you just stop effexor and start taking topamax the next day? So much to know and I need all the help I can get, so I love “talking” to you and the others as it is a great help. meredith
I see we are all still trying, and still trying to help each other. It means the world to me, I can tell you. Question:How did you switch from 50 mg. Noritriptyline to 50 mg. Prothiaden? Do you have to wait weeks before you go from one drug to another? Did you have to start Prothiaden at a low level and work up to 50mg.? I am so happy for you that you got all the way to 100mg. and are finally feeling somewhat better. That is wonderful. I am still on 180 Verapamil and working slowly up 10 mg. every two weeks. I HAVE to go that slow. The slde effects are horrible for me. Now Next week I will be in Dr. hain’s office and he will put me on something to help the dizzys. I don’t have headaches anymore because of the verapamil, I think, but by dizzy is just awful and makes life impossible,for now. I wonder what he will put me on. Effexor, I 'm thinking, but that is like poison to me, as I did try it once. ( and I did only a third of a 37.5 and it still made me sick)
Yes, my son is a caring person and has lots of empathy for others, as he has been through so much pain and suffering in his life. He is a dear. He is also a computer “genius” I think, haha and of course, I’m NOT,so he helps me with lots of things on the computer and he actually got me started on this forum. Good luck with the Prothiaden. I don’t know if we have that here in the USA. It sounds like it has LESS side effects. I might move to ADELAIDE just so I can get that. nite, Meredith
Nortriptyline and Prothiaden (Dothiep) and both tricyclic drugs so you can switch between the tricyclics without having to reduce the dose of the one you’re on & then slowly up the dose of the new drug. One of the reasons I chose to give Prothiaden a go was being able to go from one to another. My neuro told me that Nori is a more powerful drug than Dothiep so I was happy to give it a try. If it hadn’t worked then I’d have had to spend weeks lowering & then upping a new med. I was really dizzy at that time so thought it worth a try. I’m not sure whether you can do a switch within other ‘families’ of drugs. Maybe someone else on the forum will know. Sounds like you are still extremely anxious about Dr Hain pressuring you to take Effexor. There are still other meds you can try so be firm about not wanting to try it again. I’m sure he will have had other patients who have had a bad reaction to Effexor. Good luck for your visit next week and let us know how you get on.
I have been on the Citalopram (Celexa) for about 5 weeks now and I don’t notice any changes as of yet, but I do have a few unwanted side effects (low libido). Maybe I need Cialis (just kidding), that is the ed drug that you see on the commercial.
The Effexor was really a brutal drug for me, but I wanted it to work so I suffered through the side effects for the 7 weeks. I tapered off of it before starting the Topamax, which was also a horrible drug for me. I tapered off the Topamax before starting Citalopram.
Good luck with your appt. with Dr. Hain. My first neuro wanted me to see Dr. Baloh at UCLA, but my medical group didn’t approve it. I’m live about an hour away from UCLA, so that would have been perfect for me. I am going to see another neuro in mid April, and he is a partner of the first neuro I saw. The first neuro just did a few stupid test (had me walk around, stand on one leg, had my eyes follow a pen) and then said he didn’t know what was wrong with me. I ended up getting an MRI after that visit, which was clear thank God.
Feel free to private message me anytime if you need to talk. We all need supportive people during this hellish mess.
Was just wondering if you saw any improvement in Mav on nortriptyline prior to switching to prothiaden
I ask this because nortriptyline didnt help me. Got all way 50 with no help w dizziness so now on 20mg
As used to At least help with mig pain. Nort was a rough drug for me to tolerate and because no improvements on it wondering if would b worth ever trying prothiaden
Yes, I did have a small improvement from about August last year when I switched to 50mg Prothiaden - enough to help stagger around without my walker! However, it wasn’t until I upped the Prothiaden to 75mg in December that I really began to feel a difference. The electrical pulses over my head lessened & the rocking & losing balance at the slightest head movement improved. Less nausea too. Am sitting on 100mg at the moment - still get dizzy using the pc for too long and bending over, moving head too fast, coping with shops, etc. but otherwise am less exhausted & getting back into my normal life. And, hallelujah, fingers crossed, the migraines are rare. This time last year I spent nearly 3 months in bed with almost continuous migraines & dizziness so hope you can find a med to help you. I find I have less side effects on Prothiaden (dothiep) than I did with Nort - I felt ill all of the time I was taking it. Might be worth while doing the switch to try - hope it brings better results than the Nort.