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Title: Vestibular migraine? Post by JohnM on Oct 24th, 2007, 11:01am I came home from work yesterday feeling a bit dizzy and unsteady on my feet. I drove the short distance home feeling a bit "seasick" when turning my head. It got worse in the evening, but was ok if I sat still or lay down, but everything started to spin when I got up, and when I tried walking I was all over the place. BP checked out just fine. 130/80 I phoned my doc this afternoon and he said it could well be a Vestibular migraine, even though I had no headache, and he said that was fairly common. He asked if I still had any imigran injections left (I have some 4 year old stock) and said it was worth trying a jab to see if it helped, rather than try and get to see him today. I gave myself the inj - 1st time in over 5 years ,and also without a kip 8/10 or any HA to speak of - what a wierd experience! Within seconds I felt like the inside of my brain had been electric shocked and was burning at the back of and all across my scalp. My chest really tightened up - quite a rush. Now 30 mins later I feel so much better, just have that "after Trex" feeling of lethargy. Dizziness is gone. Does anyone here have experience of Vestibular migraine? I recall a similar experience of dizziness lasting a few days some years back, also no headache, and it went away by itself, but this time it was worse. I have taken maybe a 100 or more imigran injections, but it never felt like this. John |
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Title: Re: Vestibular migraine? Post by luveemom on Oct 24th, 2007, 11:11am Not sure about the vestibular migraine, but what you describe sounds more like a BP issue. If when you sit up and or walk around you were experiencing dizziness that may have been your BP dropping. How was your BP checked? Did you do it yourself? Had you eaten all day? Possibly low blood sugar??? Could have been many things....I question what Doc said only because you said you had NO headache....JMHO [smiley=huh.gif] Alicia |
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Title: Re: Vestibular migraine? Post by JohnM on Oct 24th, 2007, 11:25am BP is fine. I have my own monitor which I 've been using for over a year with consistent results which compare accurately with BP taken by my Doc at check ups and with the Nurse at work. NOT BP problem. Yes, I had eaten - I never ever miss a meal ;;D I have since been looking on th einternet for this problem. Check out: http://www.mayoclinic.com/print/dizziness/DS00435/DSECTION "For most people with a vestibular migraine, vertigo doesn't necessarily happen at the same time as the headache. Instead, typical migraine triggers may lead to vertigo without an actual migraine. Attacks of migrainous vertigo can last from a few minutes to several days. " |
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Title: Re: Vestibular migraine? Post by luveemom on Oct 24th, 2007, 11:41am Ok, I did check it out, and most of what I read said that dietary changes and triggers are what are most important to avoid. It said nothing about using triptans. It did say a lot about nicotine, alcohol, and lots of dietary triggers....ie....avoiding a high sugar/salt diet, and maintaining the proper electolyte balance. I went to www.vestibular.org. Maybe you should check it out. Tightening in the chest isn't a good thing when dealing with triptans. Be careful. There can be serious cardiac affects. In my experience, in EMS for 12 years now, those BP monitors are not accurate at all, even though you say it is.....they really are not. Best of luck. alicia |
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Title: Re: Vestibular migraine? Post by JohnM on Oct 24th, 2007, 5:04pm Hi Alicia Don't really know where you are coming from here with the advice, but my doc made the suggestion to use the trex and he has known me for 25 years and so I trust his judgement. Anyway all I can say is that it is now some 6 hours since I injected the imigran and my symptoms of dizziness and lack of balance went from pretty weird throughout the previous 24 hours to just about non-existant within 20 mins of the inj and I feel 100% right now so it did something good I reckon. As a previous long time user of trex for CH episodes between 1995 when I was first prescribed it, and around 2002 I was used to its effects, but it did pretty much take my breath away this afternoon, and maybe not the best choice of words but the "tightness in the chest" - was more like a strange sensation, which I recall the first time I ever used trex. I never felt the burning inside the skull before though and so rapid from inj. It passed pretty quickly in about 15 mins. I know that generally DIY BP monitors may not be accurate, but mine has been extremely consistent and compares 99% to 2 "conventional" BP testers operated by medical proffesionals so I reckon it is a good indicator that my BP was in it's normal for me range. Until today I never heard of vestibular migraine. I checked out vestibular.org - not much help though. I eat a healty diet lots of fruit veg fish chicken and occasional red meat and generally avoid sugar and salt as much as possible. I don't smoke, and drink in moderation maybe once or twice a week. This came out of the blue and I hadn't eaten or drank any of the so called "trigger food and drinks" since well before last weekend. In fact I am positive that my diet/lifestyle these past 5-7 years has seen me go from yearly CH episodes since my 20's (I am no 55) to no CH or migraines these past 5 years. My stash of imigran expired in Aug 2003 but is obviously still effective - been stored in a dark cool place. Been posting here since April 2001 John |
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Title: Re: Vestibular migraine? Post by luveemom on Oct 24th, 2007, 7:17pm John, Well, not sure where your coming from with the "I've been posting on here since April 2001"....???????? As far as where I am coming from, not sure why you are so defensive..?? You post on a board and will get all kinds of opinions and/or advice.....so no need to get annoyed. I am not really giving you any advice just information and my medical experience. If you are all set as you say with your Doc then why bother to post anything?? Keep using trex if you like that has expired 4 years ago....you said you had chest pain, I was just warning you also that chest pain is dangerous with triptans, but since you know it all...carry on.. :P |
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Title: Re: Vestibular migraine? Post by Annette on Oct 24th, 2007, 8:22pm My first concern is John, how could a doctor make a diagnosis of vestibular migraine over the phone without examining the patient and then asking the patient to try imitrex injection? especially one that is 4 years old ? You didnt even have a headache, only dizzyness. Although one does not need to have a headache with the dizzyness it is called vestibular migraine for some reasons. The main reason is that it is a first and foremost headache condition, which may cause vestibular symptoms such as dizzyness, but you should at least have had some headaches close to the time of the dizzy feelings to make that diagnosis likely. There are 1001 things that can cause those dizzy symptoms. Blood pressure is not the only one. Anything that affect the middle/inner ear can cause those symptoms. I dont understand why your doctor would jump to vestibular migraine as the first possible diagnosis. My other concern is the symptoms you had after using the Trex. The electric shock like sensation and burning feeling and tightening in the chest is due to the extremely strong vasoconstriction effect of the tryptan. It also meant you didnt have CH or migrain at the time. During CH or migraine attack, one gets vasodilatation of the blood vessels and the tryptan works by constricting them back to normal. However, if you didnt have migraine or CH, your blood vessels would have been normal and the trex would have constricted them too much giving you these side effects, and THAT IS DANGEROUS ! Sudden severe constriction of normal blood vessels in the heart can give you a heart attack ! The fact that the dizzyness went after that may just be coincidental. I am more inclined to say you getting such severe effects from the trex injection makes it very unlikely that it was vestibular migraine to start with. Furthermore, you dont have other symptoms of vestibular migraine as you found out later. I know you trust your doctor but I would not be so much myself. What he did was very irresponsible ! He could have killed you ! By the way, I have seen people who have exactly the same dizzy symptoms with just fluid behind their ear drums, which once dried up stopped the symptoms. Please be careful and take care of yourself. |
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Title: Re: Vestibular migraine? Post by JohnM on Oct 25th, 2007, 2:05am Thanks Annette for the feedback and sorry Alicia if I came off sounding defensive. My comment about posting since 2001 was meant to just show I am not a newbie here and have plenty of experience of CH/Migraines and have read up as much as I can. I went to see my doc early this am, but I am feeling just dandy today. I had a full medical check up as I was due anyway. Got blood taken for range of tests incl fasting glucose, Cholesterol, PSA etc. BP was 130/80. Quick blood sugar test showed 5 which seems ok? Every thing else checked out ok just await test results next week. I did not mention it here before which was remiss of me, but I had a low key fairly constant HA for a day or so on Sun/Mon this week - not realy enough to even take an aspirin, but it was gone when the dizziness started so did not associate it. I did however mention this to my doc when I first called him - he asked me. I was a bit off key when I posted. As for the trex being old - well even my doc said that it can lst for years if stored properly and that the expiry was mostly an indication to protect the manufacturer. Whether it helped to rid me of this is up for discussion. I never said I had "chest pain" it did not hurt at all - was just a strange sensation - difficult to describe. Just made me feel weird for a few minutes. One thing I can say though is that I won't be trying imigran inj again for anything except full blown CH. John |
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Title: Re: Vestibular migraine? Post by Annette on Oct 25th, 2007, 3:06am You are welcome John and I am glad you are alright. :) So did your doctor diagnose vestibular migraine in the end? Or was it something else all together? |
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Title: Re: Vestibular migraine? Post by JohnM on Oct 25th, 2007, 4:14am Annette - thanks for the concern. The jury is out on the diagnosis. The imigran inj seemed to make the symptoms go away. He checked my ears and they were clear as far as he could ascertain. He also checked in all the other orifices :-X and all seems ok. I told him about the trex comments from you guys but he was not phased - he said that if it was Vestibular migraine there was a likelihood trex would help and that as I had never had a negative reaction in the past it was ok to use. Maybe I should have tried the 1/3 imitrex tip, but I was too unsteady to do it or even think about it. Maybe if I get this problem again I will rather try a small amount rather than the whole vial, which on reflection was poor judgement on my part with of all my experience with trex. I did have a similar experience of dizziness, poor balance for a few days, maybe a week? about a year ago and it just went away by itself. This time was quite bad and very scary and got me quite worried. I await the blood test results which may change his views? I was really hoping for some first hand knowledge of thie problem from someone here. John |
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Title: Re: Vestibular migraine? Post by Jill on Oct 25th, 2007, 6:32am Hi John... I am glad to hear that you are doing better. That is always good news.. I don't know anything about the vestibular migraines but I wanted to write to you because of what you said about the imitrex. When I tried imitrex, I had that same reaction. I got a tight sort of feeling in my chest, not pain per say but uncomfortable. Also, all of my muscles kind of went weak. It was a scary feeling and the imitrex didn't even do anything for my CH. I am not sure why I felt that I needed to share that but there it is. I haven't really heard people say that the side affects are uncomfortable and I guess that if the CH is taken care of than that is what matters. Also, Annette, what do you mean that if you get these feelings from imitrex than you didn't have CH or migraine? My neurologist didn't say anything like that, just advised me to be careful with imitrex and that that was not the best course of action for me. Just wondering... Thank you Jill |
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Title: Re: Vestibular migraine? Post by Annette on Oct 25th, 2007, 8:30am Hi John I am sorry to sound really paranoid but of course your doctor is going to defend his decision. He wasnt going to say that he had made a mistake or at least gave bad advice by making the diagnosis of vestibular migraine over the phone without examining the patient. He wouldnt want to expose himself to a law suit would he? This Board is specifically for CH so I dont think you will get to hear about first hand experience with vestibular migraine here. You might have to join a migraine forum and post your question there. I was just concerned about the potential danger to your heart by using trex injection that way. I am glad that you are more aware now and will use it cautiously in the future. Jill I am sorry I was not clear in what I said. I meant if you were not suffering an acute attack of migraine or CH right there and then and you use imitrex injection, you would more likely suffer the side effects of the tryptan because your blood vessels were not dilated at that time. I didnt mean to say if that happens you dont have CH or migraine period, just not having an acute attack then. |
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Title: Re: Vestibular migraine? Post by Annette on Oct 25th, 2007, 8:52am John, I found this from a migraine forum bkickie Feb-12-03, 08:51 AM (CMT) 6. "RE: Vestibular migraine" Hi Caren! Wow, what a relief to find someone who knows what it's like with vestibular migraine. Most of my family/friends have been sympathetic, but they could never fully understand. I definitely went though some periods of time (and still do) when I think I'm just crazy! I did have vestibular testing: an audiogram, ENG (caloric test), rotational chair test, and VEMPS (to see if the bones in the inner ear were damaged). All tests came back completely normal, which is good on the one hand, and so frustrating on the other. It's funny when you actually WANT the doctor to find something wrong so you can get a diagnosis already. I was just diagnosed by a top neurologist at Johns Hopkins who specializes in dizziness. I started Effexor XR 3 weeks ago (I'm now up to 150), but so far haven't noticed a difference. I'd love to hear your story. What information did you find when you researched? Have you gotten relief from your symptoms? Feel free to e-mail me if you'd like! This is from http://www.migrainepage.com/dcforum/discussion/8265.html From what I have read, you need to have a diagnosis of migraine to start with then if you have these vestibular symptoms they should get investigated by performing all of the tests mentioned above for vestibular dysfunction. If the tests are all normal then you get the diagnosis of vestibular confirmed. Like CH, you need first to have symptoms of clusterheadaches then getting tested with CT scan and MRI to make sure that the headaches are not caused by something else in the brain before the diagnosis of CH can be confirmed and treatment started. From what you said, you had some vague headaches which were not diagnosed as migraine and you did not have any tests for vestibular dysfunction apart from the doctor looking into your ears. Middle ear and inner ear problems can not be detected by looking into the ear alone. All you can see looking into someone's ears that way is their ear drums and their ear wax ! What most important is no where did I read that imitrex injection is recommended as first line treatment for vestibular migraine. Unless there is strong headache ( migraine attack ) at the time, no one recommended the use of trex injection at all. I believe that if you get those symptoms again, go to see a neurologist and get diagnosed properly. Its better to be safe than sorry. All the best. Edited to add: some sites seem to link vestibular migraine to basilar migraine, a condition where there are vasoconstriction and vaso spams causing the symptoms, tryptans are actually contraindicated here as they increase the risk of strokes. |
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Title: Re: Vestibular migraine? Post by luveemom on Oct 25th, 2007, 10:07am John, No problem.....I was just trying to help......I think Annette has put it very well, and in her last post has re-stated what I originally tried to tell you.....trex is not indicated for this condition IF you do indeed have this condition....and can be quite dangerous....I know first hand being a person who has had cardiac symptoms from triptans...and my Neuro takes it VERY seriously...I wish you only the best John, but I do agree with Annette that your doc was pretty irresponsible giving you a diagnosis over the phone..... alicia |
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Title: Re: Vestibular migraine? Post by Jill on Oct 25th, 2007, 11:13am on 10/25/07 at 08:30:16, Annette wrote:
Hi Annette, I am sorry to 'invade' this thread but I am so confused. Maybe I am missing something but can you explain this to me a bit... about the triptans. Sorry if I am just dense... Do you mean that if you have these symptoms when taking imitrex than you aren't in the middle of an acute attack? I have never heard this before. When I tried imitrex, and this is just me, I was in the middle of a KIP 10 and had my chest tighten, muscles weaken, etc. In fact, the times that I have tried it, I have always had those affects and been in the midst of an attack. The only thing that a neurologist has told me about this is that I have to be careful with triptans and stay away from imitrex. I am sorry, again, if I missed something. The headaches make me a bit slow sometimes and I am curious. Thanks Jill |
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Title: Re: Vestibular migraine? Post by sldrswyfe on Oct 25th, 2007, 11:20am Im a bit confused too...I thought I was going to die using immitrex...it was like "take the shot...AND HANG ON FOR THE RIDE"...didn't touch the hit... Im having troubleing "catching it" too... |
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Title: Re: Vestibular migraine? Post by Annette on Oct 25th, 2007, 5:04pm on 10/25/07 at 11:13:28, Jill wrote:
Yes Jill, that is exactly what I meant. However its applicable to John only. It may not apply to others. Let me explain to you why. John has CH and he had used Imitrex injection before without any side effects. This time he gets some severe symptoms. It meant previously he had vasodilatation and using the tryptan did not give him these symptoms because the blood vessels when constricted by the trex returned to normal. They did not over constrict therefore no side effects. However, for the first time this time, John used the trex injection when he DID NOT have a headache and had very strong symptoms of severe vasoconstriction. It meant that this time his blood vessels were not dilated to start with, thats why I didnt think he was having an acute attack of migraine or CH to begin with. However, in your case, if you have ALWAYS had these side effects EVERY TIME you use the trex, even when you are having a bad headache then its an entirely different thing all together. Tingling in hands and arms, tightening in the chest with or without chest pain, burning under the skin in the face/head area ..... are side effects of the tryptan caused by strong vasoconstriction of the blood vessels in your body. This is dose related, the more tryptan you use, the worse it gets. In fact, if you get toxicity from over using the tryptan you get full blown "St Anthonys fire" or ergotism where the symptoms spread across the whole body and you risk losing fingers and toes due to blood vessels shutting down. This is why tryptans are restricted to a certain dose per 24 hrs and should not be mixed. Like with any med, side effects are experienced differently in different people. Some can use a high dose without any side effect, others use a minimal dose and cant cope. If every time you use tryptan you get these symptoms even when you have a headache, it may mean one of the below: 1- You are allergic or oversensitive to tryptan. 2- You dont have vasodilatation. 3- You do have vasodilatation but only minimally so that the tryptan still over constrict your blood vessels. 4- You have existing cardiac/circulation condition such as narrowing of the blood vessels due to high cholesterol or calcium deposit, therefore your blood vessels are already narrowed, even just a little bit more constriction becomes too much. This is why if you have heart/blood vessel diseases you shouldnt be using Trex. Jill Have you had cardiac/circulation check up? Do you have blood vessels disease? Do you have hypertension? Are you under the care of a cardiologist? When you had these side effects using tryptan even during a high kip CH, and your neuro told you to be careful with them, did you ask him why ? If he advised you that tryptan is not the best course of action for you and only surgery was, did he explain to you why? What did he actually tell you? Did he send you to a cardiologist for a second opinion? You had surgery for your CH, didnt you? Was it because Trex didnt work or was it because you could not use them due to side effects? |
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Title: Re: Vestibular migraine? Post by Lizzie2 on Oct 25th, 2007, 10:40pm John, I just saw this thread and definitely feel qualified to comment on it! I have basilar migraine (this was my 3rd headache type diagnosed in around March 2005, in addition to New Daily Persistent Headache and Chronic Cluster Headache, both of which I've had longer...the former since January 17, 2001, and the latter since around November 2003...) I also have been a trainee member of the American Headache Society, have worked in headache research, did an honors project rewriting the curriculum for headaches/migraines for nursing school, and have spent an extensive amount of time educating people on migraine and headache. I don't say all that to brag, but just so you know that what I'm about to say is not just based on personal experience, but also on spending quite a bit of time learning about this! Vestibular migraine is not an ICHD-2 classification(International Classification of Headache Disorders), BUT the literature states that it could be similar to basilar migraine or, at the least, put in the classification of "migraine equivalents." To speak on migraine equivalents - these are often migraines without the headache. In a migraine attack, there are 4 phases: Prodrome, Aura, Headache, Postdrome. Thus, headache is only a symptom of migraine. There are a few types of migraine that exist without headache pain, although they are typically much more common in children and the elderly. (NO I'm not saying you are elderly!! But maybe a big child...heheh j/k!!) Just as not every migraineur experiences an aura, not every migraineur experiences a headache either! Abdominal migraines are typical in children (episodic vomiting/migraine neuro fluff without the headache), and the elderly get migraine equivalents, which are all the symptoms of migraine, but without the headache. This can include "vestibular" migraine - or migraine with dizziness/balance/vertigo type symptoms. My best friend Cathy actually was diagnosed with a "dizzy" migraine once in college which was this exact same thing - dizziness without head pain, but was actually a migraine. So I don't have much to say on how to treat that, because that's not something I'm familiar with, and I'll admit that. Triptans are generally contraindicated for people who have basilar or hemiplegic migraine (migraine types with stroke-like symptoms), although I'll admit that I have used frova and amerge during basilar migraine attacks, and was not told to avoid either of those two. On the trex: The symptoms you described are similar to what I get from imitrex and also DHE, also a powerful vasoconstrictor. I actually cannot use imitrex because it makes my heart race too fast, but I tolerate the milder triptans of frova and amerge just fine without any side effects. I would definitely make sure you report those symptoms to your doctor, though.... I wouldn't necessarily make a direct correlation to those symptoms meaning you didn't have vasodilitation or what have you. This is just my personal opinion, however. Just be careful with imitrex - I don't know many physicians who would be confident enough to tell someone to take imitrex for a new condition without evaluating them in person. I'm not saying you have a bad doc or that your doc was wrong - just that the med is not without risk, especially in the injectible format as it has even more bang for the buck than the pill form - and please be careful with it! If you have symptoms of dizziness like this again, I would definitely ask your doc to investigate into it. And really check with him (or a neuro) about using imitrex for an attack like this. While it is not the same as basilar migraine, we're only going off of the diagnosis your GP made over the phone versus having a neurologist rule out a basilar migraine attack based on ICHD-2 criteria. ANY change or new onset headache type should be reported to a physician and investigated. Good news for me with the basilar migraine was that lamictal worked as a preventative. I only had 2 episodes of severe vertigo after starting lamictal. It's not FDA approved for that or anything, but some studies have found it to be efficacious for basilar migraine. My attack included severe vertigo (dizziness and the room was spinning - I felt like I was walking but the earth was slanted at a 45 degree angle, and couldn't stand up on my own), my vision kept blacking out, and I had memory loss for about a half hour (I lost that half hour - still don't remember it). Also had nausea, and the episode was followed by a severe bilateral headache, typical of basilar migraine. But if this vestibular migraine is what you had, and if it is a migraine equivalent, then it is entirely possible to have a migraine without the headache. Sorry to ramble on and on. While I've spent a lot of time learning and studying this stuff (have my books out in front of me as I write this), it's still just my personal opinion, and I really think it best that you explore this with a physician, especially if it comes back!! Always better to be safe than sorry!! PF wishes, Carrie :) edited to fix something I had read incorrectly...and to add to my imitrex comment. |
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Title: Re: Vestibular migraine? Post by JohnM on Oct 26th, 2007, 2:02am Thanks Carrie and Annette for the useful info. I will be seeing my doc again next week when my blood test results come in and I will definately discuss the strong trex reaction. I do usually experience some sort of effect from trex when I use it for CH but never before felt the strong burning sensation in the head. I won't be using it again with the dizziness symptoms - it was a good lesson for me this time. However my dizzziness vanished shortly after the inj - so go figure. Maybe the trex did the trick? John |
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Title: Re: Vestibular migraine? Post by Jill on Oct 26th, 2007, 3:22am Quote:
Hi Annette, Thank you for explaining to me about the triptans - that makes load more sense now. Sometimes it just takes me a little while... My neurologist never said anything about why I had those reactions to imitrex and he never seemed concerned about them either. He kind of treated it like one of the other medications that I am allergic to and told me to avoid it. Is that a strange reaction from him? He has never concerned himself with it, never checked anything or referred me anywhere. Just kind of put it on the side burner and gave me something else to try. And I never really thought too much of it after that... just an odd reaction to a medication. As to the surgeries, I had two surgeries done because I have not responded to any medications - either preventative or abortive. My neurologist didn't have anything else to try - he had exhausted all of this efforts and that was after we had tried the newer medications. He still has no idea what to do which is very scary. Thank you for your help Annette. I appreciate. And, sorry John, for invading your thread. Jill |
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Title: Re: Vestibular migraine? Post by JohnM on Oct 26th, 2007, 10:45am Jill - no need to apologise for "invading the thread" - you had good questions. There were several reasons why I posted on this subject, even though it was not really CH specific. 1 of which was to mention the "electric shock" reaction to the trex which was answered and clarified, and this info will be of benefit to many others on the board: Trex works for CH. Trex has some funny side effects - don't be scared, you will get used to them, they seem to be "pretty normal" side effects for many users. You might feel you are "dying" the first time you experience them, but I really doubt you will if your heart is in good condition. The side effects are worth the relief! Don't take Trex unless you have a bad CH or a Migraine as it may be dangerous. (use less trex at a time, especially if the pain is less than maximum - use the trex tip) My advice is to make sure that when you take trex inj the first few times make sure you can lie down immediately afterwards and rest for 15 minutes or so until the side effects pass, and definately don't exert yourself until they do! The CH should be gone by then too. John |
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