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I feel particularly low today as I spent five days on holiday and had a migraine every day. I think my Neurologist could see I was experiencing selective hearing so he. Reply Delete Anonymous 7 June 2012 at 03:50 This made me laugh. Do you take anything for your migraines now. I was pulled in by the skinny fantasy a few times,despite locust tinnitis and. I laughed so much because I thought the exact same thing when my neurologist prescribed this drug for my intracranial hypertension. Delete Reply Gill 23 March 2012 at 03:35 Hi Victoria, Im really enjoying your blog. Violet Beauregarde from Charlie And The Chocolate Factory. Had I been told that the pain would never go away (the pain still present under that much morphene), I would have killed myself. I forget,um. No nasty side effects compared to daily meds. OMO online I discuss my situation with him, and he said nothing is impossible. It feels more scary than dialling 999 and being rushed into the Rescus room and having this drug that could stop the heart beating altogether. Although I do take topamax and have been for years. Yes my friends, thirst is going to kill me. I remember too that all drinks tasted flat which was annoying if not as challenging as the insatiable thirst. I was pushing my little boy on the swings in the park and the world just left me, twice. Had whiplash in 1980 so whiplash and discs may be the problem. I looked at your last post when you met up with Twitter friends after their NMC appointment, are you thinking of coming off Topamax now. Very good idea to appoint guardians, I have my parents who are more like my victims. I accidentally took double yesterday and had massive vertigo spell - and my tinnitus has come back too. Reply Delete Victoria 24 March 2012 at 05:13 Hello Gill, Oh this is a comment I get all the time, especially with my creative writing. Anyway by the end of those few months, the neurologist said I was feeling like this due to migraines (I was getting headaches lasting a few days during this time) and so was put on propranolol. Medications have their place, but it is surely good to research on your own, and get second opinions and alternate options. So words will be had with my neurologist. Victoria xx Delete Reply elaine4queen 23 November 2012 at 12:18 HA. My Dad gave me one of his weekly pill box organisers. I also think a lot of people start off on a very high dose. He explained it actually takes some time for Kidney stones to develop, and. I can go to bed completely healthy and feeling great, only to be awakened with a full raging, bone piercing, eye-bleeding (a bit exaggeration there. Reply Delete Victoria 8 June 2012 at 01:44 That is very cunning indeed. but many of you will comprehend), nausea, loose bowel, noise and light sentsative, dibikitating migraine. And I will NEVER be so idiotic as to forget my Triptans again. I had the most beautiful hair and now it is limp, thin and almost non-existent. Dr Zitney sometimes leaves comments on this blog and seems to understand what we migraineurs face. I would lose my train of thought in meetings and drop things on the floor and burst into tears. I also realize that selling drugs on eBay is. As the thirst had augmented, so had the rage. Randomly, just found this rather funky online high tech migraine daily diary that I thought you might find interesting. I decided it was time to put me back on a daily migraine preventative. But then he told me how one patient rang him up to say. That nuts have been very scary having the side affects so bad especially in you line of work, my would just be embarrassing but yours is serious. But I ran out of them during a trip to France and my Dad had to do what your husband did. I have to wear reading glasses anyway, which drive me mental. This has nothing, whatsoever, to do with my. I forgot how to sign my name for a prescription the other month so that would be most embarrassing if on live TV. It also triggered an almighty migraine that lasted fifteen days. By week 3 my memory, speech, organization went haywire(and still is) and was sent home from work and have been off sick for 4 weeks. The side effects I experienced are relatively rare but there are other side effects, some of which are much more serious. I take 200mg topamax but I take it at night only and have been doing for a couple of years its the only way i could cope with the side affects. I know even Vitamin C has a long list of side. I was going to mail it to you but thought if someone is on a similar boat, maybe my essay will help. I wailed and moaned like a cow in labour. I started weaning myself off it at the end of February and have been completely off it since mid-March, but my hair continues to fall out. Then getting home after finally passing them, exhausted, sore, tired. s Have you seen my MOU post. My doc never indicated I needed a blood test. I am British and live in London at the moment but have spent a lot of my life in America. You will gain it all back after a while even if you stay on it. Like an idiot I forgot my triptans so my husband had to trek across Spain to buy some over the counter. I was 50 lbs overweight, Borderline diabetic, knees painful, and increasingly depressed. I too have IH and am currently on 50 mg and am scared to work up to the 100mg. She eventually persuaded me to try some, to see if it would help. I hope you have a better experience on Topamax than me. Maybe the higher doses needed for that are not so good. Man, this comment is HUGE and maybe probably all over the place. Plus your GP might be able to refer you for some CBT if you think that could help with the anxiety etc etc. Does anyone have the same lack of objectivity as me. All of you: Research this terrible drug that ruined my hair and my life. only to experience morphene withdrawls for a few days. The only good thing about Topamax is I did lose 2 stone in 2 months:) So I will now leave a message as you suggested on the forum and let you know how I get on. I never really experienced any side effects other than the tingling sensation, which was cured by a daily dose of Potassium, and some general moodiness at first, I attribute that to my Generalized Anxiety Disorder. Just trying to prevent this happening to any of you. I did, however, begin to grow a little apprehensive when I. Click Here Reply Delete FeelinManic 10 April 2013 at 13:31 I started on topiramate in November 2012 and the hair loss started in about January, I believe. I just wondered are you based in UK or USA. I did indeed get pulled out of the clouds for this drug and am back on planet Earth and alert. You do know there are some anti-emitics that you can take that might help with the vomiting, plus soluble and other, um, formulations of NSAIDs that are useful if one is throwing up. But he persisted in emphasizing all the side effects. My GP told me about this and it really did help. I experienced slight pins and needles, felt a bit spaced out and. I only decided to take it after careful consideration and consultation with my Doctors. I do have shocking pins and needles in my hands and feet and my kids now eat more then me. She mentioned weight loss as a side effect, and being years now as a medicine test rat (how I am beginning to feel), that made me super alert to google side effects on my own. But lower doses for depression and weight loss for me have been awesome. The effects on my speech and memory were terrifying, particularly since I rely on them for my career. Reply Delete Victoria 22 March 2012 at 16:20 Hey Lady, in England, where the Queen is from we have to be nice about people in our TV Ads. I should really make a note or something. I used to get epileptic fits when I was young. 200 mg twice a day,, I take it for my seizures. but it took three days by which time the migraine had gone. I did not try, or have thoughts of, killing my. I did manage to arrange some blood tests for myself - got a colleague to take them. But, being a migraine pro I looked over my. Here is the link to the Health Unlocked forum for the Centre - its via the links section of their main website. He ask me to send my photograph which I did and he bought some materials which he used for me and I was able to regain my normal health after a week. If I am on a migraine free day I am optimistic and euphoric when during a migraine I can be almost despondent. Your story of water thirst, the mental visual, the over-the-top descriptive prose. oh,memory loss. Any how, sorry to ramble on so, please let me know if you are seeing any improvement and what dosage you are up to. Good luck to you x Delete Reply Rosie 8 October 2012 at 10:06 Just read this with a half smile on my face. I was also on a rescue medication called Maxalt MLT. I have thin hair anyway, so any loss is a big loss to me. I thought I was seeing a headache specialist when I was referred to see a neurologist at Ipswich Hospital. I popped my 1st topamax on April 17th (my 49th birthday). No rage. Usually people are able to wean off Topamax slowly unless there is an event, like yours. I could sell some of these miracle weight loss drugs on eBay. I then asked to speak to any neurologist in the hospital and she said there was NONE. I do hear from others on Topamax that side effects tend to decrease as time goes by so hopefully yours will too - I know mine have been:) Delete Anonymous 6 December 2012 at 12:43 Anonymous (Nov 23) What dose are you on. Morphene push button IV along with additional shots to accompany the drip. Reply Delete Jill Seattle-ish, WA USA 11 October 2012 at 00:53 Oh goodness everyone. Big hugs being sent your way, I so understand how you feel. One young lady he had on the drug lost more than five. There are thousands of sites where millions of women are miserable after losing their hair on Topamax.
May have banned my mother from singing in her own home in a Topamax rage. Amusing on reflection but frightening at the time. For various reasons my team of Doctors and. Chiropractic services helped more than anything with my migraines but I am no longer able to go to a chiropractor daily. However I seem to be having every side effect going. Anyway, when I noticed my hair falling out, I went to my GP who ordered thyroid tests to make sure that was not the cause. x Reply Delete Anonymous 30 August 2012 at 21:02 I will never forget the great work of Dr. However, the practitioner maintains that he has never had a failure and is convinced he can cure me. I have about determined that changes in barometric pressure has a large effect on my migraines and that is unavoidable. Might also be an idea to call the information line at the Migraine Trust. Loud noises really put me on edge, or people that talk too much. But it does seem to be slowly having an effect which is awesome. I am drinking so much bloody water I will soon explode. I really hope the electro-acupuncture helps you, it never did much for me (normal that is) but it does wonders for some and I know the NHS recommend it and as you say it really is about finding out what works best for you and just trying everything. I now need hearing aids in both ears because of topomax and I am only 49. I stayed on up to 3 months with no benefit and no lessening of side effects. On week two, the first bizarre side effect. Sunday when these things always seem to happen to me, I obviously thought I was. But the thirst was to such an extent that I. My life style is very basic as work part-time, single parent, I support a 21yr old son who is till in full time education and a son whose been unemployed since he left school 4yrs ago. All of these foods are very rich in Potassium. I have fibromyalgia along with the migraines, which may be related to fibro. I too have started on the road to topamax, so far just a lot of numbness in my toes and possibly more sick to my stomach then usual. Tapping on the trigger button just in case it might release on accident before the light turned green again. She said my consultant is based at Addenbrookes (80miles away) and that she would email him and he may get back to me. Again its a free service Do let me know how you get on and I hope these symptoms ware off soon. I had an appointment with my GP this week Tuesday and thought about it a lot and decided to ask her to put me on different beta-blockers instead of going down the topiramate road. Surgery rang next day to say I need to discuss the results with GP - appointment tomorrow. cue violins. I started out on 25 mg then to 50mg. Reply Delete Anonymous 29 March 2012 at 12:02 Hi Victoria, I meant to mention to you at the User Group that I had experienced hideous side effects with Topamax. Luckily for me, I went from migraines three times a week to (knock on wood) only two in the past six months. Susan, do you have a great headache specialist helping you at the moment. I bet doing night shifts must really, really mess with your sleep cycle which is a huge problem for us migraineurs. 1 in the am and 1 in the pm. Neurologist also assured me that most of the side effects would wear off and. Victoria x Reply Delete Annie 24 March 2012 at 15:41 You are very brave. Witty and moving monologues about the reality of living with migraines. Reply Delete Victoria 27 March 2012 at 04:42 Lynelee, some Doctors just have no sense of humour do they. I do know it helps with migraines but it does nothing for mine and unfortunately I can only take Tylenol. I was on Lyrica and lost hair, plus my energy level felt as tho I could leap tall buildings. Reply Delete Replies Victoria 25 November 2012 at 05:19 Hey Lady, thanks. I was getting so depressed due to chronic weight gain even though I was active. I ran to Mum and, between lapping up water like a dog. I am sending it to some pals ans also sharing in delicious. I bought Fructise Fall Fight shampoo which seems to stop some of the loss, but you have to use it every day or the loss just seems more extreme at your next shampoo. I take it your Doctor has taken you through the range of many migraine drugs - including the other ones left in the anti-siezures. I have daily recurrent migraines but other than an over the counter analgesic I REFUSE to take medication daily. I have a sneaking suspicion it was karma paying me back. No abnormal thirst. or at the very least, a good understanding of potential side effects, so you can recognize them. The side effects became so serious for me that it was destroying my health and I had to go off but it took several months to get off of them and in fact I am not off of them yet. But that has always been a problem for me. But far more, the community of sufferers, the shared experiences, feeling very less alone than I ever have. I refused to increase dosage anymore as I was taking up to 4 pills of this daily. As a family we decided it would be best for. Its hard to tell from the language of the blog. When I went to my doctor for check up he was surprise and said unbelievable that my health is normal and my body weight equally normal. Share to Twitter Share to Facebook Share to Pinterest. Delete Susan 4 July 2012 at 13:32 Hey From Canada, ( yes, we really do say hey an awful lol,). I already have a slew of meds that I am highly allergic too. I have recently begun working night shift again and my migraines are worse due to adjusting to my sleep schedule. Talking to my dr is terrible it takes weeks to get an appointment. And as you say you have some type of epilepsy (is that right) you really must be careful and look after yourself - and get all the help you can. The weird shock feelings are still there but fainter and less frequent - say about every 4 or 5 mins apart. Ironically I now appear to be getting fatter but thankfully does appear to be helping a bit with the ole migraines. Looking forward to hearing how you get along xx Delete Reply preep 4 July 2012 at 03:17 Hi - thanks for your reply and reassuring comments - the links are useful to. Of course I blame these memory lapses on Topamax. Please do think about visiting the National Migraine Centre. Will post an update soon. It really is a very strong drug and as with all preventatives there are very serious potential side effects. Heather Delete Reply lil-bee 11 January 2013 at 02:55 I just came across your blog and I love it. Thankfully it has only given me a few more minor episodes and nothing major because the hospital trips scare the heck out of me. I think I was just feeling frustrated esp coming to terms with the fact that I have a chronic disease I will need medication for, possibly for the rest of my life. my Lord, could I relate. p. Getting back to med, I think I will pass on the Topamax. Did you see my more recent post about the links between epilepsy and migraine. I look forward to hearing how you get on. My diary is the only place that really reveals that no matter what I try I still have between 12 and 14 a month. And am i just covering up pain where there may be a real problem. Just the thought of going back to the same sad and tired zombie I was on propranolol makes me want to cry:( how long would you say it takes for side effects to subside. Readers should always seek a professional medical opinion in light of their own symptoms and circumstances. I thought I could sell this drug and make millions as the new diet wonder drug lol. I was feeling really hopeless about my migraines but your site and others really helped educate me and calm me down. No panic attacks. x Delete Reply Anonymous 23 November 2012 at 20:56 I loved reading this. Hope you are having a good, migraine free, weekend. Geography is not my strong suit at all - but are you any where near this place, in Toronto. Spoke to her about my worries about the side effects, etc but she assured me that I would be on a low dose, every medicine has side effects but its not necessary that I will get them and then she went on to prescribe 25 mg of topiramate for me. all because of Topamax side effects. Reply Delete Anonymous 30 March 2012 at 09:07 So lovely to have fellow migraineurs to share experiences with. It also cause hair loss, and the chances of kidney stones are not slim they are fairly good if you take if for long or in high doses which I had to increase the dose enough over the course of 2 years to keep it working (400 mg a day). My migraines also began at age 18, and are still going strong as I approach my 50th birthday. The FDA has also approved a combination of a weight loss drug and Topamax. It seems very informed) it does feel like my symptoms match that more than anything else. Thirst finally abated, I proudly showed them to Dad. Reading up on basilar migraines on the migraine. Mine are the type that occur in my sleep. What trolling the web looking up the side effects of topiramate I read that some one was taking pregnancy vitamins to counteract this. Delete Reply Ashley Flaviano 16 January 2013 at 11:53 Hello everyone, and thank you for the very insightful comments. One of the first things my Neurologist said. In the end it turned out Dad was right, I. Just had gall bladder removed 3 weeks ago after being sick for 5 years, and tests showed nothing until my gall bladder died. Victoria x Delete Reply Anonymous 20 January 2013 at 09:30 Haha. Reply Delete Replies Victoria 20 January 2013 at 09:38 Ola. I wanted to come on and share my shocking experience with Boots and also ask you a bit more about how topiramate has worked for you recently but now, after reading all the comments (and probably overthinking and analysing as I do from being anxious), I feel like not taking the risk of starting topiramate, at least till I finish this year of university. As I mentioned before, I went to see my GP about propranolol because it was really getting me down, tired, etc. He went on to mention other possible scary side effects ranging. The rescue medication did work quickly but I was sick and tired of medication. Instead, I took a deep breath, stroked my. So glad you found this blog and thank you for your kind words. I am really looking forward to your Topamax part 2 post. I was only on 100 mg of the topiramate a night, so not a really high dose. com site (thanks for that.
