Hi all, Just wanted to share an unorthodox treatment I've been given for headaches (both SUNCT and migraines). It is taking high dose Melatonin every night, at a dose up to 12 or 15mg. The usual...
Hi all, I alraedy have SUNCT (rare headache disorder) which is under control with eye watering amounts of medication. At the start of the year though my brain decided to treat me to a new headache....
Trevor: That's very interesting. I was exactly the same, lost 4 stone (25kg) in 3 years despite eating a lot and never moving. And I had 'stress and depression' according to (clueless) doctors. then...
Hi Cycle mom, I also have been away and forgot about this thread again haha. That's interesting you say about facial spasms. A few months after my op I developed a rare neurological headache...
Merrida: Neurontin is fairly similar in mechanism of action, so I would not be surprised if that causes qeight gain as well. I have been taking 300mg/ day in two divided doses. However my condition...
Interesting to hear that it happens to others as well. I eat a fair bit but am also 6 foot 4 and fairly heavy built, there really is no reason other than Lyrica that I would gain 50 pounds in a year....
I have been on this drug for about a year now and have gained 56lb in this time. Now, I was slightly underweight before after having surgery on a serious long-term illness (now all resolved). However...
Cycle mom, I know you are probably not in contact with this thread any more, but how incredible to hear someone else have the exact same experience! I was really lucky that mine did not rupture,...
Hi there, I also have nerve/neuropathic pain and was on Gabapentin for about eight months, eventually up to a pretty high dose of 2700mg per day. Since it wasn't working well enough I wanted to go...
How about peppermint? I drink this a fair bit and have heard it has mild pain-relieving properties. Also very good for digestion, considering so many of the pain-reducing drugs affect that....
That's not as long as I thought they were. Still sounds a lot like what I have, except mine are a few seconds to a few minutes long. CH definitely sounds worse in that the pain is constant for that...
Thanks Skeye. I am not too worried about the skin rash thing, it was barely mentioned when I was prescribed the drug anyway so I guess it is very rare. It has been two weeks since I went to 50mg, so...
Hi, I have been told I meet many of the criteria for a condition called SUNCT, which is in the same family of disorders as CH. They are called TACs I think? As I understand it, CH involves long...
Hello all, Terribly awful pain attacks this week, I thought the new med (Lamotrigine) was working but clearly just a couple of good days, an illusion. Upping the dose again soon so there is hope....
I did this a few times when I was on Gabapentin. The drug caused quite significant short term memory issues for me so many times at work I would take it in the middle of doing something else and have...
Sounds rough nvrthesame, the skin rash condition does is kind of scary to think about. Am hoping I don't come out in any skin problems, since I feel the drug is doing some good already only a couple...
Thanks Skeye, that is some more very interesting information about this drug. Within the area of neuropathic pain, Lamictal appears to be only prescribed with any sort of consistency for SUNCT (what...
Good to know, I guess that means if I do end up taking any opioid medication while on Lamotrigine I will develop tolerance more slowly hence needing lower dosages over time....
Hello, welcome to the forum. Sorry to hear about your pain, it certainly is rough having to put up with the side effects of the medications that help, I know this well. I was/am also relatively young...
Nice post spinal soldier, interesting to hear a more scientific explanation for why it works. Synergy with Pregabalin sounds good, I do notice that the two together in the evening provides a very...
Hiya Sorry to hear that, its awful when bad days flare up out of nowhere. All you can do (like I am now in fact) is focus intently on other things to take the mind off it. Hopefully it improves soon....
Thanks, that's interesting, I know it is not one of the more commonly prescribed anticonvulsant drugs for neuralgia. Seems to be specifically for these types of headache disorders like cluster...
Hi all, I started taking Lamotrigine (brand name Lamictal for you USA people) 12 days ago at 25mg per day, to be increased by 25mg every two weeks up to 200mg. The neurologist wants me to take this...
I know how you feel, have been through this kind of feeling a few times and it is very hard. It is tough living with a lifelong disability and coming to the realization that it may never change, and...
Hi Liza, I take currently 300mg Lyrica (Pregabalin) per day for facial nerve pain. Am starting a drug called Lamotrigine next week alongside too. Both are anticonvulsant type drugs. As stated above...
Hello, welcome to the forum. I joined recently too and have found it to be very supportive. I am very young too on average for chronic pain conditions, it is just something which is more common in...
I have seen similar reports of 300 being the max, however have also read of peopel taking quite a bit more per day. I am reluctant to go any higher for fear of side effects being too much to handle,...
Lindaloo: It is hard to say, every person is different. The Lyrica still causes the same forgetfulness thinking difficulties as Gabapentin for me, but at to a much lower degree. I am sure if I upped...
Ideas: That sounds awful, sorry to hear that. Everyone is different, what works for some with minimal side effects is often not effective for others. I for example respond terribly to Amitriptyline,...
So I have just switched from 2700mg Neurontin (gabapentin) per day, to 300mg Lyrica (Pregabalin) per day. The difference is incredible! No more super brain fog, I actually feel like a real person...
I have never been on hydrocodone, but I missed a dose of Gabapentin (am on a really high dose) a few times and after a few hours past the dosage-taking time I start to feel VERY anxious and...
Teddtlove: That sounds rough what you are going through, I looked up intercostal neuralgia and that would be very painful I can imagine. I am pretty new as well its only been a truly awful...
Purgatory: Thanks David, that is a really nice post. Accepting the new 'me' and the consequent limitations is key as you and others have intimated, not the easiest thing but comes down to a matter of...
Hello all I am in great pain, but new medications should be ready tomorrow so really looking forward getting started on them. Usually takes a few weeks for meds to take effect but hopefully won't...
Thansk for the great advice and support everyone - is very helpful. 7 day medicine planner sounds like a good idea, will invest in one of those. I think my doctors and specialists are very good so I...
Snowbunny: You are right about missing doses. I rarely do, have become good at remembering. Although I have had a fair few occasions where I take it during a busy period and actually can't remember...
straydog: Good advice yeah, it is important not to read too much into things and take each day as it comes. Sadly if I miss a dose of Gabapentin (did last night actually), the pain comes back 10x...
I've felt like this many a time, can empathise very well. I was in the middle of doing a pretty high-level degree at university, then was struck down with unexplained massive fatigue and illness,...
So I am beginning to come to the realization that the pain I have may be with me for a very long time, perhaps forever. Now, I know that it is very unlikely to be life-threatening, but being on high...
Thanks yeah it seems pretty rare so hoping to find someone else who has this and see what worked for them. Kind of worried it will never go away, there are reports online of people having this sort...
Hello all, I saw a neurologist this morning and upon describing my pain and frequency of attacks etc, he said I fit many of the criteria for SUNCT (Short-lasting Unilateral Neuralgiform headache with...
Good idea, propranolol could be worth a go I've heard of that. LexiRae: have taken down the name of those drugs I had an appointment today, and when asked which meds I need I completely forgot to...
MedicalKid2: Interesting to hear about all those drugs, I don't know much about all the extended release type opiods. Could be worth a shot maybe, but since my pain is as far as I know purely of a...
Interesting, they could be worth a try. However I am very wary of any serotonin-affecting drugs since I've had an SSRI years ago and Amitriptyline recently and both gave me AWFUL depressive feelings...
Hello, I am seeing doctors/specialists soon for a follow up about my pain and I knwo ti is always good to go in there armed with some information first. So I thought I would ask you lovely people for...
It is interesting how differently people react to medications, I am lucky with gabapentin in that I can tolerate a very high dose reasonably well. I should be ok with any drowsiness, I'm used to it...
Rather good news here, managed to get a free government healthcare neurologist appointment for five weeks from now. Didn't expect it to come that quickly. Still insane amounts of pain but have upped...
That's ok, I know most on this forum on are in USA and I get the impression it is a little easier to pick and choose doctors and specialists there. I can go to another GP, but now that I've calmed...
This was just a general GP (standard doctor) - I wanted to get referred back to the neurologist from there. Am going to ring and get them to refer me if I can What you mention about that article,...