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    Topiramate withdrawal

    Hello, I desperately need some help. Thank you very much!

    I was on topiramate 50mg/2 a day for one week for migraines when neurologist 1 added propranolol 60mg ER/1 day to my medication list. I took 2 doses of propranolol and stopped because I suffered from terrible chest pain that came and went. That side effect lasted 8-9 days. I was still on topiramate. Neurologist 1 did not answered my question about the chest pain and it was impossible to contact his office (either busy or “the number you dialed is not in service”.) I seek help from neurologist 2 after 2 weeks total on topiramate. Since i had bad side effects with topiramate too (drowsiness and being slow) this new neurologist told me to stop it and gave me amitriptyline 10mg at bedtime instead. I was scared but listened to him and went cold turkey on the topiramate. Amitriptyline made me super sleepy and gave me heartburn so I stopped it after 2.5 doses (the last time I took was 1/2 tablet) Since then, I have had heartburn that got better and came back, and occasional upset stomach. My hands and feet are tingly and cold. It is getting worse every single day. Last night the cold and tingly sensations spead all over my body. It’s day 13 after I went cold turkey on topiramate. The cold and tingly sensations started 5-6 days ago but got really worse last night. I am super scared. Anyone ever experienced these symptoms and can tell me what is going on? Neurologist 2 just thinks it was not necessary to taper topiramate because I was on low dose even after I told him about the symptoms. I am at my wits end. Please help!

    Worst Migraine EVER

    I’ve lived with migraines most of my life so the pain and side effects of them are nothing new. However on Tuesday I ended up with one like I have nI ever had before, and I find it hard to put into words everything that I had gone through.
    On Monday morning I had gone to the doctor because of some more inflammation problems and was given an anti-inflammatory shot. I have been given this shot before and the past and while it had triggered migraines they where within my “normal” limits. But this time he gave me more then normal, and within 16 hours of that shot at 4:30am in the morning is when the migraine hit. I knew it wasn’t normal from the start as bad as the pain was. Nothing worked from the start, prescriptions, herbals, hot, cold, ect… By 8am I was calling the doctors office to go get a shot so I wouldn’t have to go to the ER.
    It felt like I was trapped in my body and couldn’t do anything, I remember what I did but have no real image of time. I know I called the doctors office 4 or 5 times, but how long in-between I have no idea. I remember my housemate driving me to the office but really have no idea how long it took. I mean I know it takes 30mins or so but it didn’t feel that way. The best way I feel like I can somewhat put it, is that I kept passing out, but was awake the whole time. The vomiting was so forceful that it felt like it was going to come out both ends.
    Now I find myself perhaps still in shock? And terrified.
    I know I need to face my doctor and I wish I could say that I will NEVER have another anti-inflammatory shot again but I know that wish will never come true. I just don’t know what to do when the next time comes. I also know that no matter what my doctor says he will never convince me that the shot and migraine were not linked. I also can’t find anything online about this happening to anyone else, in fact it all says that anti-inflammatory stuff is suppose to help stop migraines. So again I feel lost and terrified.

    Anyone else have major success with D-Ribose?

    I’ve had migraines since I was 11 years old. I’ve tried just about every preventative med, acupuncture, massage, biofeedback, mouth guards, special diets, etc with no significant lasting results. For most of my adult life, I’ve had 4-6 migraines per month. Back in February, I just happened to try an all natural energy tea that I got at a sandwich shop, and it seemed like I was getting fewer migraines when I had the drink. So, I decided to test the theory by having one drink each morning with a breakfast sandwich. In the past 4 months, drinking one drink every morning, I’ve only had one migraine and that was on a day that I was extremely dehydrated. So, that’s like a 90+% reduction in migraines for me so far. Looking at the ingredients of the energy tea, the only one I really haven’t had before on a regular basis is D-Ribose. Research shows that D-Ribose impacts the energy production in mitochondria and it has been shown in studies to have a significant reduction of symptoms in people with Chronic Fatigue Syndrome and Fibromyalgia – but I haven’t seen anything about its impact on migraines. I bought D-Ribose powder to try by itself – and found that it makes me really groggy if I don’t take it with carbs – which is probably why the drink works so well. I’ve never had any unusual energy problem, except right before I get a migraine. And I’ve never had all over body pain – just migraines. So, I don’t have any Chronic Fatigue or Fibro symptoms – yet, it appears that the D-Ribose has eliminated the large majority of my migraines. I’m wondering if anyone else has tried D-Ribose or found any info about why it could likely be eliminating my migraines. I know people get migraines for different reasons, but I would venture to say there have to be others like me.

    1st post, Need Guidance Regarding TBI

    I suffer from chronic severe “migraines”, from traumatic brain injury 19 years ago due to auto accident. Basically have had a headache for 18 years, 15 years ago pain increased to the point of inhibiting “normality”. Haven’t worked a normal job in that long because of it. I am in horrible pain 24/7. I’ve been deemed disabled for last 12 years because of my nonstop pain. I am middle age, I have done every type of treatment you can do in the states from Chinese medicine to Botox and everything in between.

    Where would I find people with similar conditions as me? Is there a group or social network thingy???

    My condition has worsened dramatically in the last 6 months(hard to imagine) for no apparent reason, or so it seems. so I’m wondering if there is anyone I can compare “notes” with?? Someone familiar with TBI and migraine treatments in USA.

    Any direction or guidance would be greatly appreciated!!!
    Thank you for the help in advance.

    Please Help… Migraine hangover lasting weeks

    some background to start…

    I’m a 40 year old male, had about 2 or 3 migraine attacks in my life each of which only lasted a few hours.

    Just over three weeks ago I had the following attack…

    I was very stressed at work (office job, sitting behind a computer screen)… went for lunch and as I drove back to the office the sun was glaring in the windshield of my car I believe this was the trigger.

    So as I sat back at my desk my vision started to get very blurry and when I turned to talk my work colleague I could only focus correctly on half his face. Then I left the office to attend my doctors… vision was blurry all this time and when I arrived at the doctors surgery I couldn’t remember my doctors name.

    I was quite confused not knowing the exact location I was at something I should have know…. I was confused about other minor details too. I attended the ER and after some blood test they informed me it was a complex migraine attack and they would plan a CT scan for a few weeks later.

    This was 22 days ago now and ever since I’m suffering from ‘brain fog’ not sure how best to explain it but I’m not 100% alert, it’s like I have a hangover all the time. There’s very brief periods where it clear 2-3 hrs over a 4 day period. I wake up each morning hoping it has cleared but when I get up I still feel the same. I shower two times a day hoping to clear it but nothing works.

    Has anyone ever had after effects of a migraine that lasted for weeks? I’ve been googling but I have not found any such cases.

    My CT scan is in 4 days time so my doctor is telling me to wait….. but he is not giving me any info or reassurance this is a normal period of time to feel like this.

    Sorry about such a long post but I’m quite worried id never feel the same again… so id be most grateful if anyone has experienced something similar and can share their story?

    Thanks for taking the time to read my post.



    I wish it would stop…..

    Over 50 Newbie here…I have been having this daily headache for about 6 months. It started right after I had this weird cigarette smoke smell (phantosmia) that wouldn’t go away. My headache starts every morning around 8 or 9. They are mainly around my left temple.It comes and goes throughout the day. Along with blurred vision and upset stomach. Have had a CT scan and a MRI. My ENT said I don’t have a sinus infection. The results of my MRI were “Suggested congenital hypoplastic A1 segment of the right anterior cerebral artery. Mild mucosal thickening scattered bilateral ethmoid air cells and frontal sinuses.” Waiting to get a follow up appointment with my ENT this week.
    I do wish the headache would go away. I don’t like to feel this way everyday!

    Finding/Starting a support group

    Hello! I’m outside the Seattle area and am looking for a physical support group and not having any luck. Does anyone have any advice about how to start a support group?

    Been in a CGRP study for the past 5 years

    I have been in a study for CGRP (Amgen sponsored) at the Jefferson Headache Center in Philadelphia under Dr. Silberstein. For the past 4 years I have been receiving the drug. I can’t say enough, it has changed my life. I was getting at least 1 migraine/week. I now get less than 1 /month. It’s not fool proof, but the frequency has significantly dropped and there have been no side effects for me. I would encourage anyone with chronic migraines to see you headache specialist about this ground-breaking drug.


    I have suffered with Aura Migraines since my 40’s but now in my 50’s I’ve had a spell lasting three weeks and I had to take some days off. Usually I can work through and collapse when I get home or at work at least get the overhead lights off. The last spell like this was about 18 months ago and since then I get them but not on what I would call a regular basis. Upshot is I’ve never been sure what my trigger or triggers were. Yesterday I caught a whiff of a musky perfume and my head was immediately on alert, today my colleagues ( all considerably younger than me) are each wearing different perfumes and guess what the migraine is back. Thing is apart from potentially causing an outcry by asking them to refrain from wearing perfume to work, which I know is a potential solution, are there any other tricks I can use for example a air purifier on my desk ? If anyone out there has had a similar problem then any advice is welcome, thank you

    Is this really "just a migraine"


    At a bit of a loss of where I can go from here and would love a bit of advice for those who’ve been in a similar predicament.

    So I am an otherwise fairly healthy 20 year old with a history of migraine which are fairly well controlled with propranolol. However, on the 29th I woke up with a dead arm which then developed quite severe spasms and tremors as the day went on. By that evening I also noticed that the vision in my left arm was blurred and I just generally felt quite disorientated to the point I got completely lost walking to the local shops and had to call my flat mate for help. The next day although some feeling had returned to my arm, the sensation was reduced and I had pins and needles in it and my fingers had curled and I couldn’t keep them straight at all. By the 3rd day of this I had loss complete function in that arm with the spasms still present and now a crawling sensation in that arm. The next morning things started to progress more worryingly as my arm problems continues but now my right leg was weak and there was some altered sensation in my right foot and spasms now in the leg too, also became very dizzy and nauseous. By the next day some of my sensation in my arm was much better and the tremor was now only present when i was trying to use it however the movements on my right side were ataxic (jerky no fine motor control) and I could not walk in a straight line, my speech also became visibly slurred and the visual problems became much worse with a large black blind spot in the centre of my vision. No new symptoms have developed since then although the ones I’ve mentioned lasted around 8 days before beginning to clear up although my vision is still dim with a black spot in the left eye almost 3 week later.

    Anyway so I finally managed to get in to see a GP yesterday, as I stupidly forgot to register with one when I started uni in September and got pretty much nowhere. He cut me off after around 10 seconds and diagnosed migraine with aura and told me to take an aspirin and sumatriptan (despite serious reaction to it in past) if it happens again. There was no real headache with nothing in my usual location (just a small pain lasting a couple of hours on the right side at the base of my skull).I’ve also had migraines for years which have never resembled this in the slightest. Anyway, my issue is he wouldn’t carry out any further tests or refer me so I am at a loss of how to get to the bottom of this, do I go back for a second opinion as soon as possible or just wait to see if it happens again? Has anyone had migraine symptoms resembling this? Sorry for the rant just feeling very frustrated at the whole situation.

    Thanks for anyone who’s managed to read all that and any advice on where to go next would be fantastic,

    Emi 🙂


    Hello everyone,
    In March 2015 my headache specialist put me on Gabapentin as a preventative for my chronic intractable migraines. She started me off slow and now I’m taking 3 100mg capsules two times a day. So far I’ve not noticed any decrease in frequency or severity of my migraines. I’m also doing the Botox and using the Cefaly headband device.

    My question to the community is has anyone had success being on Gabapentin? I’m not sure if I just need to give the medicine more time or if I need an adjustment to it or if it’s time to give up on it. I’ve already been on a bunch of other preventatives that have failed including Inderal, Topamax, Depakote, and Zonegram.

    Any help/feedback/or suggestions are greatly appreciated. Thank you.

    Vestibular migraines?

    Hi—diagnosed with vestibular migraines seven mos ago. Thankfully no pain but severe vertigo, double vision and scary mental fog. A few mos ago, now just hvg vertigo, mental fog and exhaustion. Anyone else diagnosed with this?

    cervical medial branch block & occipital nerve block

    Does anyone have experience with the cervical medial branch block procedure? Did it provide relief? Any side effects? A pain management physician recommended the branch block and the occipital nerve block. I’ve previously had the nerve block and had no response, meaning no pain relief. I’m concerned about the branch block side effects — I’ve experienced side effects with all previous recommended therapies. As an aside, does anyone ever feel their physician isnt actively listening? Making a recommendation to repeat a procedure that the I’d stated “didn’t provide relief”? It’s frustrating!

    Questions about side effects

    My first 70mg injection was beginning of August and was lucky?? enough to get the second 70 mg on time. My question is… is anyone having extreme fatigue and/or muscle pain? I’m really hoping this works for me, but this a very noticeable change. I’ve always had muscle pain, but this is unreal and I get up at 6am and see everyone off to work/school and can easily lay back down (and have) at 9 and sleep until my kids get home at 3. Help! Is this happening to anyone else?

Viewing 20 topics - 1 through 20 (of 2,052 total)