Struggling on Dothep

Hello everyone
Just in need of some moral support as I struggle with the side effects on my new medication, Prothiaden/ Dothep. I’ve been on this drug for three weeks and for the last two weeks I’ve been really suffering with added dizziness, fatigue, visual vertigo and daily headaches. I’ve been waiting and waiting for these symptoms to subside before I increase the dose. I had the same experience with Nortriptyline especially the increased severity and frequency of headaches. My Dr was hesitant about prescribing this drug because I’ve failed with other Tricyclic antidepressants. Should I move on? My husband is encouraging me to stick it out for another 3 weeks before binning it. I am in two minds, I have read that other people in this forum have struggled for the first 6 weeks before noticing improvements. I guess that it is just a battle feeling so miserable when I have to be at some functional level to look after the kids… at the moment it is difficult just putting one foot in front of the other. I have a chinese proverb that I constantly refer to when I’m struggling: “To get through the hardest journey, we need take only one step at a time, but we must keep on stepping”.
Thanks for listening
Kylie

Kylie
I would encourage you to at least give it the six weeks trial. What dose are you on? I got to 100mg Dothep (over 5mths) before my headaches reduced to a manageable level & significant improvement with dizziness/balance.
Sometimes it seems the improvements are so minute it’s hard to realise how far I’ve actually come - Chinese proverb so true!
Barb

Hi Kylie,

I know exactly how you feel. I am going through exactly the same thing at the moment with nortriptyline. I had no side effects at all at 25mg but no improvement in dizziness. I changed to 35mg and from the first day I would say I was 10 times worse in terms of dizziness and I got a horrible persistent pumping headache at my temple. I also had a massively increased frequency of acute dizzy turns. That was 6 weeks ago. I had a horrible month followed by 10 much better days so was feeling like I had fought through the side effects and it had been worth it. Then I had another intense dizzy turn on Thursday and am now worse again. I’m wondering exactly the same as you, should I scrap the nori and ask for something else!! I think I’m going to wait until I feel stable again then up the dose to 50mg and take it from there, if I suffer increased side effects again I’m going back to see Dr. S to discuss an alternative. I know exactly how you feel as it’ s difficult to know whether to keep pushing on to give every drug a fair trial…let me know how you get on? xx

Hi Kylie

Sorry to hear dothep is causing you problems. If you can maybe try to stick it out a bit longer as I have read people who feel awful at first but then get better at a certain dose. I can say that for me the nori did not cause worsening symptoms, it gave me side effects like short of breath, fast heart rate but I thought it could be helping the dizziness. I don’t know if that means nori or the tricyclics are definitely right for me but sometimes gut instinct is best to know what’s right for you. I think it depends what causes the migraine as to which drug will work. The tricyclics are working on norephedrine and serotonin so if that isn’t the cause of your migraine it might not be the best med for you I guess. I have heard some people do really well on Gabapentin which targets the GABA receptors in the brain so might be another one to try if dothep doesn’t work. I really hope you feel a lot better soon. Love the proverb, it’s so true x

Thank you Barb and Lizzie. I am on 25mg. They are capsules so I can’t even cut them in half. Dizzy Lizzy the fact that you had a good 10 days is very encouraging but then having a relapse is disappointing. I am feeling for you. It’s hard to know what to do and whether you are suffering day in and day out for nothing. Keep in touch. Love to know what the next couple of weeks brings for you. x

Thanks so much Jem for your wonderful advise, I really appreciate it. Gabapentin might be worth a shot if Dothep fails. I am going to persist for another few weeks I think. Nothing to lose I guess, except for a pretty miserable Christmas. How are you going Jem? x

I’m better than I was a few months ago at the height of my relapse so I am hoping that the nori is helping. Still got a way to go to get back to how I was earlier this year. It takes so long doesn’t it! Let me know how you go x

Kylie, I absolutely will keep in touch and let you know how I get on. We are at similar places!! All the best of luck with it, I’d be inclined to stay stick it out a little longer, my husband is the same as yours and is encouraging me to stick with it a little longer!! x

Kylie,
I would def stick it out for another 3 to 6 weeks if you can. These meds take dinosaur yrs to work sometimes :frowning: I am hoping for the best for you! This illness sucks so much but with the right meds I feel as though we can all get better. It just takes time…and lots of it, which is easier said then done when you have to work and have kids to take care of. Right now, I am going through a relapse, so topa hasnt been able to help me, but it was, and Im sure this relapse could be way worse with out it. I am really pulling for you and I pray you find some relief!
Lisa

You were doing so well on Topamax too … that’s disappointing, I really hope that it is a temporary slide. I think this time of year everyone is falling in a heap. I am really dragging my feet … but the thought of three weeks on the beach is spurring me on. I’ve been on Dothep for 3 1/2 weeks now. The headaches are subsided a little and feel that I may have improved fractionally. Still very dizzy but manageable. Don’t feel well enough to increased my dose yet . The fact that Dothep comes in capsules won’t allow me to increase the dose gradually by breaking it in half. I plan to give this one a good 12 weeks and hope I can manage to get to 75mg in that time. Have a lovely Christmas and thank you so much for your encouragement.
Kylie x

Kylie

60mg of cymbalta capsules and 30mg of cymbalta capsules are the same price. I bought 60mg capsules only and take 60 mg in the morning and 30mg at night by dividing the beads half and half into 2 empty capsules which I bought separately. Not very hygienic, but I don’t see the problem if I use my own washed hands to do it. This saves me a lot of money rather than buying the 30mg cymbalta capsules separately. Alternatively you can find a compounding pharmacy that will divide the capsules as per your requirements but they can be quite expensive but you can be assured of it happening in top hygiene environments and the division will in exact equal doses. Since I use my owns I can never be accurate as I just see through both empty transparent capsules and compare the heights of the beads on both. If they look similar in height, I use them.

Thank you Nabeel. That is a big help. We live in the country so the next challenge will be to find a compounding pharmacy. Thank you so much!

Dizzykylie
I’m sure one of the things that helped me tolerate the dothep was going up in tiny steps. Dr Granot suggested getting a compounding pharmacy to make up the 10mg capsules which have been a great standby, esp. when I had gone up to 125mg & had increased side-effects so I was able to come back down to 100mg at a slower pace.
Since adding Perictin it has definitely taken seven weeks for the peri to make a difference. I was ready to ditch it but had encouragement from Victoria to stick it out. During that time I had a couple of relapses because… I overdid things, e.g cycling 120km in a week (which I could do OK before mav :smiley: ). Took me a week to get back to baseline! After another couple of incidents I hope I have now learned that ANY undue stress is going to set me back (even doing something I enjoy!).
If you don’t have a compounding chemist locally you can send away for your script to be filled. Hope this helps.
Barb

Oh thanks Barb! I will do just that and send away for my script to be filled. Great idea. I am really reluctant to double my dose at the moment. I think I’ll take baby steps with this one and hopefully can make it to 75mg in a couple of months. That Dothep must be working wonders if you attempted taking on such a big ride… I’m impressed and rather jealous! Good for you. Thanks for your support Barb. Have a lovely Christmas!
Kylie