Topamax for migraines with insomnia nightmares anxiety

[Claudeminh]

Hi there, I tried topamax this week for migraine control. I wanted to lose the weight I have put on using ampitryptiline and proprananol. So thought I would reduce propranonal and start topamax in consultation with doctor. I kept the ampitrypltyline as its only 25 mg a night and keeps my meningitis induced neuropathic pain away.

What a disaster. First night,25 mg topamax pill then overcome with anxiety, insomnia and then crazy dreams of extreme violence and despair. All day feeling really worried. Second night, second 25 mg pill, spaced out, couldnt really talk, then the same, the nightmares fear and extreme anxiety. Next day crying at the news on TV.

Made an executive decision, went back to old drugs. Wow, that was scary. I felt so moody, irritable, intolerant, hateful, paranoid and mental. I decided to stay a bit fat. Admittedly I had no migraine for those two days, and I didnt eat much, but I think that was because I was too deranged to eat. Too anxious. I also had a lot of stress at work, and I had a back injury that caused a lot of pain, and so the insomnia played on those conditions. I think I can only trial such a difficult drug if I am not at work, and the rest of my health and life is in perfect working order. In that case, I am considering when that might be, I might not be able to stop working for 20 more years or more.

Or maybe I can never try drugs that are so destabilising. I am so relieved to have ampitryptyline as it promotes good sleep and has not psycho active properties. Its not destabilising and its excellent for neuropathic pain from meningitis that I had five years ago. I never thought I would be so relieved to know this drug after what I just experienced.

Its the third day, last night not take the topamax and I am still jumpy, paranoid, weird and moody. I wonder how long it will take to go.

Has anyone else been destabilized by topiramate? I am worried about drugs that can create such mood disorders, what if they set the mood instability in motion and it was hard to change it back? Or might it have improved in a week or so? Too scared to find out. I can live with the dress sizes.

Anyone else found it good or bad?

[babs1234]

I’m frightened to try any of the preventatives as I’ve had nothing but negative issues with them, including Amitriptalyne

[Quito]

Hi Claudeminh - gosh what a horrible experience you've had. I hope you are feeling better now after stopping the topamax.

I started taking it too recently (on Christmas Day - weirdly, as I knew I needed to start it when not working!) and managed 28 days. The side effects were dreadful for me and I was only on the lowest dose (25mg) for the entire time. I also had insomnia from it, felt spaced-out, my short-term memory stopped working and I basically felt very unwell and unhinged all the time. It also caused a constant back-of-head/occipital neuralgia-type headache to add to my others. After I stopped taking it, it took a few days to recover and for each side effect to reduce... most stopped after about 72 hours and the insomnia started to abate after 1 week.

All the side effects are reversible (so, said my trusted migraine-specialist-doc) - so try not to worry about the mood instability being permanent. You will start to feel better once the drug is completely out of your system, which could take a few more days. These drugs are powerful and are life-savers for many people. E.g. my brother-in-law has no/few side effects from topiramate (taking 200mg!!) per day and they've transformed his life; reduced his chronic headache and related neuralgia pain.

But some migraineurs - clearly like you and me - can't tolerate them well at all. I kept thinking I should stay on topiramate longer to "give it chance to work".... but the side effects didn't settle down after 1 month. In fact, I started to have more after a couple of weeks into it (e.g. foul smelling urine (wtf?!?!), stomach pains, torso rash, kind-of hallucinations (the trippy ones you have when falling asleep but these were happening while I was awake!). For me, this drug didn't help. I wish it had as so many people report its miraculous results!

I'm not a doctor, just sharing my experience - but to me, it sounds like you've done the right thing by stopping them. You know your own body, mind and moods... and if the tablets made you feel worse and anxious so quickly, then that's no 'reprieve' from migraine anyway.

Take care and I really hope you feel better soon. xx

[Kzwalls]

Hi

Your not alone! I tried topamaz but after two months made the decision to stop albeit over a number of weeks (advised to taper off slowly)! For me it had benefit at all with my daily chronic headaches but i felt like i was changing! I had numerous side effects that ranged from mild to down right scary including terrible nightmares! The good news is that the side effects all ceased once it was out of my system. So hang in there! We are all different but just trying to find the right one for you! I tried amiltriptyline but didn’t help my headaches! Now on a fourth preventative and so far little side effects! Its another epilepsy drug but fingers crossed it helps but again really slow increasing dose over a 3 month period! Take care your not alone xx

[Claudeminh in reply to Kzwalls]

Hi kzwalls oh glad to hear from you. Topamax has a strong psychiatric effect it seems. I feel really good again now so would be wary doing another trial of it. I am now just on proprananol and ampiyryptyline and happy with that so far. Just ploughing ahead. I tried lyrica once but wasn't so good on that either. Thanks for your contact

[Gwenfro]

Hi. Was also told this was option by consultant neurologist but I’m afraid that after reading side effects and a chat with gp I got cold feet . Head is fuzzy every day for the past 3 years migrane attacks severe before. and during periods which keep me out of action for days😩 xx

[md5299]

After 5 days on 25mgs they went in the bin,never again.

[Margauxjean]

Claydeminh, hello. Just a question re propanol and amitriptalyne- it sounds like the combo keeps headaches at bay? Do you have great relief taking these two together? How long have you been in them? Are you still getting Botox every 3 months? It stopped working for me after one and a half years, having shots every 3 months. My neurologist said he had not a single patient, except me, who did not have complete and continued relief with Botox. Apparently my migraines are the worst he's treated in over 40 years. Thank you for reading. Take care. M.

[wesley10]

I was prescribed Topamax last week for my severe migraines and vertigo - within a few hours, terrible eye pain, deteriorating eyesight, completely fatigued, drained and felt very very ill. Vertigo far worse as well as nausea. It was hard to know if it was worsening of my condition as I have had very bad days or the drugs but after 5 days I had enough, I was very scared regarding the eye problems.