I am feeling so disappointed because Topamax did not help and only made me feel worse. It made me so depressed, extra dizzy, sick, and I lost a lot of my memory. I have tried nori (worked for 3 weeks and stopped working the remaining months I was on it) Propranolol, Topamax, and Valium. I am also on a strict diet. I am not even sure if my neurologist can help me anymore and my dizziness has gotten worse. I am thinking about getting a lumbar puncture to see if the fluid from my spine is going to my brain correctly. I am just not sure what to do now and I feel so helpless and would do anything not to be dizzy. If anyone has advice or suggestions that would be great.
I know it’s really hard, especially when med trials take so long. You have barely scratched the surface of preventatives though - yeah you have tried the big ones, but there are so many others - Verapamil, Amitriptyline, Depakote, Botox (once you qualify), SSRIs like Celexa, SNRIs like Effexor, etc. There are also all of the supplements, like Vitamin B2, Magnesium, CoQ10, Butterbur, and Feverfew which help many and have some decent evidence behind them. If your doctor is giving up on you after just a few meds, it’s time to find a new doctor who is better versed in other preventative options. You are far from the end of the list, don’t give up now!
Also, how are other life habits like sleep, stress, etc.? All of those can affect us too.
Hi Dizzyforlife:
Thank you for responding. My doctor has just recommended that I start taking a high dose of butterbur/feverfew and increase my magnesium and see what happens. I am just hoping I can get this dizziness under control at some point. As far as stress, I am always stressed due to a demanding job and I get at least eight hours of sleep a day. I hope this butterbur works.
Hi Katie,
Do you have any accompanying depression and/or anxiety?
THe meds you’ve trialed haven’t touched on that, so I wonder if that might be the next step to try?
Hi Rocky:
Thanks so much for replying. I have dealt with depression/anxiety for a long time but I just tried to cope with it. I sometimes think that the depression/anxiety turned into the dizzies. I wonder if I lack serotonin and should see psychologist. I am thinking about considering Cymbalta or Lexapro. It’s just very difficult for me to find relief from this.
HI Katie,
Then I would definitely try either a tricyclic (like amitriptyline or nortriptyline) or Effexor (a lot of doctors/users have had success) or the two you suggested. I tried Lexapro, and it didn’t work for me, but the Cymbalta did the trick. ANy of the meds that will help boost your serotonin will most likely help all of the depression/anxiety/and migraine…since serotonin is thought to be at the root of a lot of these issues.
I would recommend a psychiatrist vs. a psychologist because they know more about the medication that affect the brain. I also prefer a psychiatrist over a neurologist because they seem to be more compassionate. That has been my experience.
Whatever you choose, I would really recommend that you start low and go slow…that will make the transition easier on you with less side effects.
Good luck!!
Kelley
Hi Kelley:
Thanks so much for your suggestion. I am going to make an appointment with a psychiatrist and see if I can try Cymbalta or something. I was on Nori for a while which worked for 3 weeks but stopped working and I even jumped up doses and went down doses but it stopped working. I was on it for months and my doctor had me stop taking it because it was no longer helping me. Did Cymbalta get rid of most of your dizziness and do you feel it helps with the anxiety?
Yes the cymbals helped with anxiety a ton and dizziness pretty well, I did have to add two more low dose meds to the mix to really get full control. Phenergan and Klonopin. Pretty much symptom free with not do great days and am still sensitive to triggers like lack if fleet, stress, red wine and excessive travel. But overall fully functioning !
I guess the fact that nori was helping is a good sign that you are treating the right condition. had you reached a therapeutic dose on it? Is this why you came off it, as it wasn’t working at a good dose?
As others have mentioned, you have so many other meds to trial. Where are you from and which neuro do you see?
Dr silver really makes a point of saying that lifestyle measures are so important in all this - going to bed and waking and the same time every day. No day time naps. 2-3litres of water per day. Regular meals and no caffeine or chocolate.
You are probably doing all of that already but just thought I’d say in case
Hi Richy:
I did in fact reach the therapeutic dose and stayed on the it for a long time. However, it stopped working and my doctor had me stop taking it for that reason. I even upped the dosage and everything. I had minimal side effects on Nori and wished it had helped me longer.
I am going to see about trying some more meds. I am from California and see doctor Caroline. She use to work at the mayo clinic along time ago and is really good but she suggested trying a high dose of butterbur/feverfew for now.
I eat really healthy but I know what you are talking about. I guess the medication journey can be a difficult process but I have to just try as many medications I can.
Katie
I have just started taking Cymbalta to help with my balance problems. The lowest dose in Oz is 30mg so I had some 15mg caps made up at a compounding chemist as I like to take a ‘low and slow approach’ to trialling new meds. They are a delayed release med which I take at night having found that it makes me sleepy!
This is the first med that has really helped my balance issues and I feel really ‘grounded’ for the first time in three years!
Barb
Hi Barb:
Thanks for replying. I think that is a good idea to start on the lowest dose, I may have to also get a lower dosage. I just made an appointment with a psychiatrist so I am hoping all goes well. I am just trucking along and hoping I eventually get that magical pill to help my dizziness.
nabeel
I’ve only been on 15mg Cymbalta for two weeks and haven’t changed anything else in regard to meds/diet/sleep, etc so, yes I would have to say it is definitely the Cymbalta which has helped my balance and also enabling me to actually stand still without wobbling or supporting myself.
From memory, I think you are on quite a high dose of Cymbalta (?for anxiety). Do you think it has also helped any balance probs you have?
I was extremely sceptical (& reluctant) about taking this med & surprised that Dr Granot had prescribed it for me. My GP had told me it wasn’t a med she would have given me! So, even tho it isn’t perhaps a regularly used med for VM for me it just reinforces the fact that we need to be ‘brave’ and trial whatever meds we can to beat this ‘beast’! :twisted:
Barb
Yes Barb I am on 120mg of cymbalta and it has helped both my anxiety and balance issues. What other meds r u on? I remember you were on 75mg of Topamax as well. How is the Topamax going on that dose?
nabeel & sarah
I’m still taking 100mg Topamax and it helped a lot with motion issues and visual vertigo but not as much as I’d hoped. It has helped enormously with motion issues, eg being a passenger without suffering nausea and being able to
look at the passing scenery, etc and being able to walk normally when I got out of the car! It also helped with walking
on uneven footpaths, moving around inside the house without staggering from ‘pillar to post’, putting my head down or moving my head sideways, etc. Watching TV without the ‘panning’ making me dizzy - in fact there’s a whole raft of things that it helped! There was some improvement in large stores with fluorescent lighting but I was still getting dizzy and unbalanced, needing something to hold onto. These issues seem to have improved somewhat since starting Cymbalta.
Since MAV hit I have always felt ‘unsteady’ with muscles tensed in my legs most of the time I was walking or ‘trying’ to stand still. It’s been like I’ve been wearing a pair of ice skates on dry land and trying to keep my balance every day with the only respite being either sitting in a lounge chair or lying in bed!!
So the Cymbalta has been a BIG deal for me even tho it’s such a little dose that I can’t believe it could make such a
difference! Now to train those leg muscles to relax!! It seems to be a good “add on” to the Topamax for me.
Barb
thats wonderful about the cymbalta barb esp at such a small dose- keep us updated with that- nabeel is on that combo too. are you going to raise the dose soon?
