Time to give up on the nortriptyline?

Well I’ve titrated up as far as 70 mg Nortriptyline and there has been no improvement in fact I feel worse. So I’m going to slowly wean myself off it. I am trying to biuld up the VRT but it is difficult with the meds. Also since my last VRT stopped working after 3 months , I have little faith in it. I have tried topiramate, lyrica and nort and ami and had no relief to the MAV dizziness. What worries me is that my VRT and DR S seem to indicate that we are running out of options. So I assume this is me housebound for the rest of my life.

Hi Fiona,
I am very sorry about this latest drug trial and that you are feeling you are running out of options. Can you tell us a little more in detail about your previous trials of the meds you mentioned such as what dose you got to, how long you stayed on the med, and why you ended each trial? With that info, it might help us to put our heads together to help you figure out your next move. Also, what are your major MAV symptoms you are trying to target?

Don’t give up. There are other options.
All the best,
Lisa

Hi, well I’ve had this for 2 years solid. My symptoms are constant disequillibrium, swinging head, rocking in the head, unable to go out to supermarkets or busy areas, on occasions spins that throw me to the ground and of course sickness. I only have headaches when I am trying the meds. Pizotifen I took for a week but the headaches and rocking got too bad so I stopped. First time round only managed Amitrip and Nortrip for 2 weeks as symptoms got worse. Lyrica for 4 weeks then the symptoms worsened so I stopped. My brain really does not like the anti convulsants; topiramate was the worse because I passed out after 5 days so had to come off of it but the drug had jarred my brain so badly it took 2 months to get back to my pre drug level. This time I have tried nort for 8 weeks titrating up 10 mg every 2 weeks. Last year I worked really hard on the VRT, which made me feel far worse and eventally after 4 months saw some 65% improvement for about 4 months then after going out on 3 conscetutive days the VRT stopped overnight and I was back where I was. I gave up the VRT at this point. And that is my sorry tale. I am on Dr S’s diet which is not as extreme as Dr Buchholtz or Hain’s but I stick to it. 50 this year. Dr S feels that being perimenopause is not helping.

Hi Fiona,
I am very sorry about the last 2 years for you and your experience with the med trials. My only comment would be as to why you might have felt so sick or had to stop within days for some of the meds is that you started at too high of a dose. For example, I know that some people start topamax at 6.25 mg a week and titrate weekly at that amount. If you started any higher, such as the usual recommended 25 mg, I would expect you to feel so much worse and be off the drug ASAP :slight_smile: I wouldn’t rule out an entire class of drugs just based on that experience. There are also the beta blockers and calcium channel blockers that you can try, but I really think that with our condition we have to start very low and go very slow on titrating any of these meds.

It sounds like you did that with Nort. and I am sorry you did not get results. I don’t think you should lose hope because in many ways Nort. was really the only med that you truly trialled as you need to be on these meds for a decent amount of time at a therapeutic level to really call it a drug failure.

It might just be approaching the next trial less aggressively with regards to dosing? And patience:(

Please keep us posted Fiona.
Warmest,
lisa

Fiona,

I agree with everything that Lisa (MAVNY) said, in particular the fact that you only trialled one med to a therapeutic dose. This is all so frustrating. I just wanted to mention that I am currently on nortriptyline, which I trialed in the past and stopped at 20mg because of how difficult it was to tolerate. But, I am on it again and determined (I am only on 20mg at this time). My doc recommends increasing by 10mg every 6 wks. I know this is such a slow titration, but he believe it will allow our bodies to adapt well to side effects. Perhaps, you even need to go higher. What does Dr. S think? However, I understand your desire to stop if you are getting worse. I was also wondering, can you let us know what foods Dr. S recommends avoiding. Or can you please tell us what foods he says are ok that Dr. Bucholtz says to avoid. Thanks so much. Please keep us posted on your next plan of action. Btw - I have all the symptoms that you describe for almost 3 years, and it has been absolutely horrid.

Lisa

Hi Fiona…i noticed in the description of your symptoms you said you have “rocking in the head”…i also have somethint like this too. It’s like this back and forth every which way Motion. One anti-anxiety tablet per day gives me some help with this…but still no cure. But atleast i can work part-time go to movies and spend time with friends.

Can you explain in a little more detail about this rocking in the head feeling.

Thanks…

Joe

Thank you for your replies. I think with topiramate I started at 50 a night for one night then upping over three nights to 200 …not that I got that far. Dr S’s diet is not eating/drinking; coffee, chocolate, cheese, dairy , citrus fruits and bananas, chinese food for msg. He seemed to discount Dr Bucholzt diet as ‘too draconian.’ The rocking in my head feels rather as if the inside of my head was moving on its own. In built up areas I get dizzier and dizzier until I have to look down . I have taken diazapam anyway for years to help me sleep’ I know it sedates the brain so I can sleep. But I have a tolerance to sedating drugs and know if I use it often in the day my body would adjust to it and I would have to up the dosage. However I do use it when I go to Hospital as a car journey makes me feel sick.

Fiona…i have very similar symptoms as you… as far as the motion in the head is concerned. I have posted many times on this forum if any MAV folks have this symptom and i generally don’t get many people who say they have this. The motion gets really bad if i don’t watch my diet…or stress. If i forget my medication…things can get very rough too. My worst days i feel like i’m deep sea fishing. I’m taking a benzo (xanex) and Verapamil. Both give me some relief.

Do you suffer from Motion Sickness? I have never outgrown it…particularly in very Curvey Rides in the Mountains or Carnival Rides that go in circles + on a boat…all these will make me very sick. A good majority of people outgrow motion sickness but unfortunatley i didnot.

Joe

Joe, that’s exacrtly how I have always been even as a child. I can’t even look at roundabouts and that odd building thing in a carnival that’s all out of cinq I can’t even put my head in . Boats even in dock are bad if it’s a choppy day. And as for aneasthetic…

— Begin quote from ____

My only comment would be as to why you might have felt so sick or had to stop within days for some of the meds is that you started at too high of a dose. For example, I know that some people start topamax at 6.25 mg a week and titrate weekly at that amount.

— End quote

I get so very confused by the meaning of “theraputic dose” when it seems to vary so greatly. Recently, I took 13 or 14 pillules from a 37.5 capsule of Effexor ER for 5 days. By the 5 day the pains in my stomach were excruciating and I was rocking so hard I fell. Stopped taking the pillules for 2 day, stomach pain dissappeared totally. Today I took 6 pillules and within 2 hours my stomach was rolling again. Am I to understand that I did not give the med a true trial when I was doubled over in pain from that small an amount? Should I go down to 3 pillules and try again? I never know what to do.

It seems that some people get relief from 10 mgs. of Nortyp and others need 70 mgs. Please tell me what “theraputic dose” means and how long a med trial needs to last.
Thank you,
Sal

HI, my understanding from Dr Bucholzt and others is you up the dosage until; the side effexts are intolerable, you get relief or no relief at all. It seems to me those meds are not right for you so try something else. What I do find irratating from these DRs is that they say the meds ‘don’t make symptoms worse’ even my DR S says this and frankly I know my own body. Coming off the meds I reach a level where I feel better…not right but better than being on the medication. Therapeutic simply means the dose that works for you and as you say the anomoly is that whilst a low dose works for some …much higher is needed for others. I think this is the nature of neurological disoreders. They are sods to contain. Generally the trials last 2-3 months.

Fiona,
I think what you wrote was very well stated and I do not have much to add. I do, however, think that you should reconsider the class of anticonvulsants after learning about your topamax titration schedule. I don’t think any brain could handle that amount without a violent reaction. Did Dr. S prescribe that schedule for you?

Sally,
I think that if you are having such a severe reaction at such a low dose, then it is probably not a good med for you. What I was implying with the topamax was that in Fiona’s case, I truly believe that by starting at 50 mg, she was bound to fail the trial. Heck, even regular migraine patients start and 25 mg for at least one week and never increase more than that amount weekly. In your case, you are starting at well below the recommended level. However, I would always check this out with your doc to see what he or she says about your reaction to this med. Did your doc want you to open the pill and start at this amount?

All the best,
lisa

Lisa, Yes, after my convo with Hain, my doctor read about how he started teh Effexor. He was very leary of the withdrawal effects but agreed to try it by taking those low doses. I haven’t called him yet but took none for two days and the stomach pains are totally gone.

So very depressed at another med failure though.
Sal

Hi Sally,
I can certainly empathize with failing med trials. I am so sorry. What meds have you tried and can you tell us your experience with them? Did you always start them all as slow and at such a low dose as effexor? It does seem that so many have trouble with effexor for some reason. I guess that is why besides Hain, it seems the other neurologists use either the tricyclics or the SSRI’s in that class of drugs.

Hang in,
lisa

I did spk to some1 on another forum who went on effexor she said it was hideous to start with and hard to tolerate but she was so ill anyway she persevered .
She said it took about 3-4 months to take effect and she is now 100% better she is off the med now after a year and still going strong but said it was awful to get off bad withdrawals.
i think it does get results but takes a very strong person to tolerate the s/e and desperation .
I dont know if I would try it though but seems to get results in the long term.

I have always started the meds at pediatric doses. The med that actually worked the best for me is Tegretol at very low doses, the problem is that it did not last. The ground was still for one week, that felt so good, and then the SE’s and rocking came back. Other than that not much luck with any of the anticonvulsants or SSRI or tricyclics.

The depression has been overwhelming lately so I know that I need to find something to deal with that.
Sal

— Begin quote from “Blondie”

I did spk to some1 on another forum who went on effexor she said it was hideous to start with and hard to tolerate but she was so ill anyway she persevered .
She said it took about 3-4 months to take effect and she is now 100% better she is off the med now after a year and still going strong but said it was awful to get off bad withdrawals.
i think it does get results but takes a very strong person to tolerate the s/e and desperation .
I dont know if I would try it though but seems to get results in the long term.

— End quote

I agree. I started my round of Venlafaxine after seeing Dr. Hain in January. The first weeks was HELL (shaking, depression, wicked tension headaches) and the following 2-3 weeks little improvement. Then things got MUCH better. Then about three weeks after my dizziness returned, but not the headaches/pressure I had before. I feel a slow progression upwards, and Hain suggests going another month or so, then he might up the dose.

It seems that Effexor/Venlafaxine is a bear to start on, then either you can’t take it, or ride it out to an eventual “cure”. I think Hain’s infamous “80%” success rate is based on those who can tolerate it. No telling how many that may be, but I for one would encourage patience with this drug…I can actually function again.

My pharmacist calls Fex “Side Effexor” for those very reasons.
Yet many peopole say there’s no problem …they obviously don’t have MAV!!
:slight_smile:

Side Effexor

LOL. That is sort of funny if it wasn’t for the fact that it’s supposed to be THE MAV killer according to Hain. :?