Symptom progression

I have just been getting worse and worse with each passing day. During my first year of this I only experienced rocking when walking and of course many other unpleasant symptoms. I now am having more and more rocking when sedentary, and yesterday I woke up to 90 minutes of spinning vertigo. i have progressed from being house bound to basically bound to the bed. I emailed Dr. Rauch yesterday and again he said that he would not give anything during pregnancy, but he did have me read Dr, Bernstein’s book (the migraine brain), who does mention the usage of SSRIs. Dr. Rauch, though, said that SSRIs are ineffective. My sister-in-law who is an ob/gyn said that she would take the zoloft, as the baby is already formed at 18 months. She thought I was crazy not to try it. I just keep on thinking about Dr. Buchholz telling me that zoloft will make things worse, and Dr. Rauch saying that it is “ineffective.” certainly don’t want to make a bad situation worse.l How do you know what to believe? anyone out there taking SSRIs with success? sorry I’ve been a broken record with my indecisiveness about the SSRIs. Are others unable to leave their house? I know a few of you mentioned having good and bad days. I wonder why I have had NO break in this in over 2 years. no good days whatsoever. sorry once again for the whine. I know it is unproductive.

Hi Lisa,
Sorry things are going from bad to worse. I just heard from Howie and he said that zoloft got him to 80%. That’s up for me next for sure if my verapamil trial fails to get me to 100%. I think the only way to find out for sure if zoloft will work for you is to try it. As long as your ob/gyns are giving you the go-ahead, you have nothing to lose and only the potential to realize some benefit.

I know how hard this decision has been for you, but there are lots of docs out there who prescribe this regularly for MAV. Maybe none of the patients that take this med are on this forum because they get better :smiley: just a thought…

I’m having one of the worst days I have had in awhile myself so I certainly feel for you and really hope you can find some relief. Spent the moring in tears and just can’t find any relief today…

Warmest,
Lisa

Thanks, Lisa. I like what you said about the people on SSRIs not being on this forum because they are better :slight_smile: I never thought of that. I know how well Howie is doing. wonder, though, if it’s the combo. I’m so sorry you’re doing so horribly.

I apologize for speaking for Howie, but I just asked him via PM and I believe he got to 80% on zoloft alone and then added verapmil and clonazepam which got him his life back.

I thought it was the opposite. He started with verapamil and then added zoloft. So funny that we are speaking for Howie. Howie - if you see this feel free to chime in about your own treatment.

I hope Howie will find this funny at least that the two Lisa’s are speaking for him. I just got a PM from him and asked him this specific question. Upon his first meeting with Dr.Newman he was 80% on the zoloft and then verapamil was added…

boy, we need to get lives my friend :lol:

Hi Lisa x2, I am thinking about Lexapro and Verapamil as my next trial. My Dr talked about Lexapro and then I suggested adding Verapamil to the mix, primarily because it was one of the meds that I tolerated well (at lower doses) and looking back, I was more active when I was on it so maybe it was doing some good. I mentioned Zoloft but he preferred Lexapro. I am waiting a wekk or so to get the Topamax out of my system. In the meantime, I am trying magnesium and I may try COQ 10 also. I did have a blood test recently and my magnesium level was out of range low. As far as symptom progression, looking back, I was better before I started all the med trials (January for me) but maybe it would have just progressed downward anyway. I am still hoping that some of the hormonal changes will bring some relief during the later term for your Lisa. I don’t know what to say about trying the Zoloft. It seems that so many Drs say it is ok that maybe you try and start very low (maybe 12.5 mg) and then slowly increase to 25 or 50 mg. It is a very difficult decision and one that I honestly wouldn’t know what I would do. Wishing you both the best. Ben

Ben,

i wish you all the best with your next trial. I am so sorry that Topamax didn’t help. You certainly gave it a good shot. I hope we all get better soon. I believe that our symptoms just progress until they are appropriately treated.

Lisa

Hey Ben,
You and your doctor’s plan of action sounds really solid. With regards to lexapro vs. zoloft, there probably really isn’t any difference since their mechanisms of action are basically the same. I used both as first line treatments when I was working and treating people for depression and both were tolerated very well. Some patients reported less sexual side effects perhaps with lexapro, and often times with lexapro the starting dose I used which was 10 mg was the dose that many responded to… for depression… that is… MAV, who knows…

I also agree with your addition of verapamil. For me, I think I have a very partial response to it as well (although not today for some reason) and will most likely add zoloft to the mix if verapamil doesn’t get me better once my dose is at more therapeutic levels. What dose did you get to with verapamil and how what was your titration schedule if you can remember?

Good luck, feel well, and keep us posted.

Lisa

Lisa x 2, thank you both for the replies. MAV Lisa, we are all in this together and I really do believe that each of us will find some form of relief in time - I really wish your relief would come soon so you can enjoy your prenancy! MAVNY Lisa, I made it up to 300 mg on Verapamil, although it was brief at 300 mg. I started with 1/2 of the 120 mg capsule (I poured out 1/2 of the 120 mg capsule). I pretty quickly went up to 120 mg, maybe after about 5 days. I stayed at 120 mg for a good 4 weeks and then made the jump up to 240 mg. I stayed at 240 for another 4 weeks and toward the end of that time the weather started to get warmer and I began to notice that I was retaining water (my ankles would swell pretty badly by mid day but would usually subside over night). I still wasn’t getting a whole lot of benefit so we decided to crank it up to 300 mg. The ankle swelling started to get bad and it had been about 3 months so we decided that it may not be the right med for me. Looking back, I think I may have stayed at 120 for a little longer and maybe try 180 instead of jumping right to 240. With the cooler weather coming, I am not as anxious about the ankle swelling but will definitely watch for it. I will start with 120 and stay there for a while this time and see. I am going to start the Lexapro first and then add the Verapamil after a couple weeks. Staring dose for Lexapro is 5 mg with the goal to get to 10 pretty quickly and stay there for a bit to see if it helps. I hope that Verapamil does something positive for you. I know that Nance saw very good results from only 120 mg - I think it took a good couple of months but once it kicked in she got her life back. Good luck and let me know how it goes. Ben

Hey Ben,
Thanks for the information. My doc is moving so slow with my verapamil titration. I am currently on 100mg and go up by 20 mg each month… He is cautious as to my low body weight, resting pulse and blood pressure. I really don’t think that they were affected at all so far. I’m frustrated because I have been on this trial for 4 months now and barely at a therapeutic dosage. How was you blood pressure and pulse before you started the med and did you notice any decreases even at 300 mg.

Hope the lexapro does the trick for you. These trials are just brutal. I keep in touch with Nance and she is the reason I am holding strong on this med because it took close to 4 months for her to see much improvement.

Lisa

Lisa, I should have mentioned that I too am a low BP person. My usual is about 110/65 with a pulse of about 62. I can honestly say that the Verapamil had very little impact on my BP and pulse. There were a few times on the higher dose that I felt extra fatigued and my BP and pulse would be a little lower (maybe about 95/55, and 55 for my pulse) but it didn’t happen often enough for me or my Dr to be concerned. I did end up gaining a a few pounds, which for me was a good thing! I would consider upping the dose a little faster, especially if you have been tolerating it well so far. I hope this is the one for you! Ben

My treatment was undiagnosed MAV so I went on Zoloft and Klonopin for about 1 year. this improved me to 80% to 85%… I went to Dr Newman who added Verapamil and diagnosed me with MAV…With in 1 month I was pretty normal. I stayed this way for 1 year and we tried to come off the Zoloft as I gained some weight on it… 6 months later total relapse… I also had a relapse when I went off Verapamil for a few months trying to have more kids…

Anyway I am 95% now on 100 mg’s of Zoloft, .5 of Klonopin 2 times a day and 240 Verapamil 2 times a day…MAV is very stable…

Now I need to work on my Cholesterol which is pretty high and Statins raise my liver counts and Zetia aggrevates my MAV. Dr Newman is going to work with my Cardiologist to try and figure something out…Maybe Zetia every other day

Thanks for the clarification Howie… hope you didn’t mind Lisa and I discussing you but we are always happy to hear of success stories and the treatment that worked.

I just wanted to add that my symptoms also got worse…My entire life was in a “halt” stage as the progression continued…hang in there and I think if I were you, I would also take the Zoloft.

Pam

Howie - thanks for the clarification. Keep us posted on the twins. I am excited for you!!

Pam - thanks for the advice

All the best, Ben. You are working so hard to trial all these meds in a very organized fashion. With each med trial, you are closer and closer to finding the correct one for you. Verapamil helped with my headaches and migraine w. aura. I am thinking the SSRI and Verapamil combo might also be good for me in the future as well. I stopped the verapamil because headache control wasn’t enough for me, but maybe it was a start.