iāve had this dizziness for over 2 years, been to 8 doctors. medicine iāve tried has bad side effects. iāve gotten the most help i believe from a cocktail of vitamins. or either just gotten use to it. some days terrible, some just bad. mainly wanted to try this to see if iām doing it rightā¦ any help would be great, thanks herb
Hi Herb and welcome. Assuming you already have a VM/MAV or similar diagnosis?? With days as described sounds like some improvement might go down very well. Itās impossible from your brief intro to know exactly what to suggest. Maybe initially you need to plough through all this siteās Welcome and Wiki sections for more info. If you are determined to continue without medication look closely at the migraine diets and other lifestyle changes you will find on site. Then thereās the Migraine Survival Guide and the thread entitled āFAQs by neurologistsā both of which should give you a good grounding of the various options relating to the condition. Somewhere in there you may well find some further suggestions. Good luck.
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Sorry I did not give much info, I wasnāt sure I was doing this correctly. Without knowing the different names of the drugs itās safe to say I have tried at least three that I read about on this site. I wasnāt seeing a lot of success with themPlus I wasnāt fond of the side effects. Because I am on Suboxone and 63 years old any meds that causes me more dizziness or more fatigue or trouble urinating itās not good for me. Any advice on anything without terrible side effects would be appreciate it. Either the vitamins I take helps or maybe Iāve just gotten more used to this terrible illness. Thanks
Hello, I am new here and hoping I do this right. 63 years old and been dealing with this for three years, dizziness fatigue every day, all day. 10 doctors, MRIs, and different medicines and I hate the side effects so I donāt take them. I had some luck with vitamins but now they donāt work. Nortriptyline tries to help but I cannot take a higher dose because it affects me going to the bathroom, urinating. I guess thatās enough to start with. Help
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Hi herbdizzy.
I write this assuming you already have a Vestibular Migraine Diagnosis and that any other medical problems have been thoroughly investigated?
Sorry to hear your troubles but unfortunately itās not an uncommon occurrence. There is quite a few of us on here of similar vintage who could write much the same. One communal factor of most on here is hypersensitivity. Hypersensitivity to anything and often it seems everything. I can even react to vitamins and Iām not alone even in that. So sorry you had to come here but at least you now know you are in the right place. Even if we cannot help you we do at least understand you and your sufferings. It is something one really has to suffer to some extent to understand. Outside this community you will find some of your comments relating will cause some extremely strange looks and even stranger replies.
As you have tried so much already I can only suggest your next step is to fully understand the condition you are dealing with in order to become better informed. Once there you should be in a better position to plan your next steps. Iām talking lifestyle changes, diets etc, etc so please have a plough through the following links
Vestibular Migraine Survival Guide 2014
FAQs answered by Neurologists
Also have a look at the Success Story category and maybe some of the Personal Diary one too. In other words have a good read around the subject. No hurry, no pressure and certainly no test at the end of the weekš but hereās hoping it will give you some ideas for your next steps. Unlikely you will actually get rid of it but quite often it can take lots of little interventions combined to find some relief. Nortriptyline is a well respected much used preventative. Perhaps it needs some help. As you have discovered itās not a static situation. Things change. VM is a rollercoaster ride and you need to throw everything you can at it.
One more very important thing donāt underestimate the power of exercise.
The advice is, repeatedly, to walk as much as possible
Just yesterday I read a thread on here that mentioned the medicine called ā tyro tryptā.
Iāve been unable to find the reading again, would anyone remember about this and maybe could help me find it. Thanks
I found a cure for my MAV! (so far anyway)
Here you are but beware. The contents are powerful stuff that cannot be taken with antidepressants. The product is only available in Canada. At first read it may seem the ideal solution however thatās the only reference made on here over many years. If itās so successful how come that is ask yourself. Also if you really read it carefully I think there have been other drugs/factors involved. One has to be very careful. People sometime omit things. Not out of malice or with any misintent. Simply because they may have been so much part of their everyday life as to overlook them. An example if this is many long term diabetics often tell doctors they are on no drugs simply because their insulin becomes just as much part of their lives as cleaning their teeth they forget to mention it.
I have fully researched the thread you refer to and it looks as if it could be the answer however it could just as easily read as an advertisement. Itās possible to buy the main ingredients individually to recreate the compound. I worked it out. Also itās more than possible that the B6 is the https://migrainetreatmentgroup.com/migraine-treatment/why-replenishing-vitamin-b6-is-crucial-to-migraine-prevention.
Btw you can use any keyword (tyro trypt for example) in the Search box and it will bring the thread straight to screen.
Thank you so much for such a quick response. So if I live in Virginia I guess that means I cannot get it.
Also I wonder what makes it so powerful, if itās just mainly a vitamin? I only take 10 mg of nortriptyline, I want to take more but I think it messes with my urination. I wonder if that low-dose of nortriptyline cannot be mixed with it?
I wouldnāt waste a single tear if I were you. Thereās a poll on here under the Wikis which lists the 20 most popularly used drugs amongst many people on here over the years and tyro trypt isnāt even mentioned.
Action: You could try b6 on its own. It gets good reviews In some places or you can plough through the above suggested links and she what the experts there suggest and try those. Yes even the ones you may already have āfailedā sometimes itās not the drug that fails you but the methods used to get on them.
I am not a chemist. @flutters makes good points in that thread that explain as far as I recall. These drugs are changing chemicals in the brain.
Thanks for helping me, I guess Iām just desperate And will try anything. I hate the idea of psychotic and antidepressants and anti-convulsions medicines. They are certainly not something to be taken lightly. And the doctors Iāve seen will prescribe them and tell me to come back in two months and I can find out in a week that I cannot take them and then Iām all alone again for the rest of the time
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Just like me and very many others. Very few have ongoing case management available for this condition. In that we in the U.K. have even less than most US sufferers from what Iāve witnessed.
I think you will find this forum exists to some great extent because of the above. This is where people come in those circumstances. Here they receive support the medical professionals elsewhere are not offering.
As you say it comes as a shock to be suddenly contemplating taking such drugs but remember used off label they are being used to treat your condition and that is always, as far as Iām aware, a much lower dose than they would be used to treat the conditions they were originally designed to treat.
Can you be more exact as to which drugs you āfailedā this far? Can I ask for more details of the ways in which you have found it impossible to tolerate these drugs so quickly? What sort of effects they had? Often people start taking far too high a dose and increasing far too quickly. Taking tiny initial doses can help and thereās plenty of advice on here covering all that. All these things need consideration. Also, Quite often, but not always I personally had to abandon one drug after two days because of reflux as I have a GERD diagnosis apart from MAV, people have expectations that the drugs will immediately start āhelpingā and would never cause any initial teething problems which unfortunately is an entirely false one. One drug I was offered came with a health warning to āexpect to be worse for at least three weeks before any chance of feeling betterā.
Btw donāt expect the specialists to appreciate the hypersensitivity. They donāt.
Just a note on my own viewpoint as a result of my own experience. I am always keen people progress their treatment to obtain control because personally I suffered VM untreated and undiagnosed for twelve years and the only thing that happened was that it became increasingly worse so I like to think I can sometimes prevent others treading that same path.
Iāve been on 10 mg of nortriptyline and I think that has promise but when I tried to take more the urinary retention scared me. I wasnāt interested in a catheter. Iāve tried verapamil and Topamax but both of them made the dizziness worse.My cocktail of vitamins, magnesium and so forth help some but they donāt help anymore
No a catheter certainly doesnāt appeal.
Quite often drugs do make one much dizzier until your system gets used to them. Some see it as an indication they will eventually work better than the ones that initially produce no reaction. Donāt know if thatās true but itās what they are saying currently about reactions to Covid jabs too. There are a lot of drugs used as preventatives. Each specialist has their own favourites. You could ask your medical providers about the feasibility of trying a betablocker maybe or cyproheptadine is it, the US rough equivalent of Pizotifen. Itās certainly worth considering a migraine diet, quitting caffeine and the other recommended lifestyle changes. Itās all part of the control package. Drugs alone rarely do it anyway.
Has anyone had any luck with taking painkillers to help the migraine symptoms like they did 25 years agoā¦ I ask this because it seems sometimes something like Excedrin migraine, OTC will help a tiny bit briefly.
The last neuro I saw actually suggested soluable aspirin as being āgood for vestibular migraineā. I have been on long term preventatives more than five years. Many people do take painkillers in addition. However beware Rebound Headaches. Search the forum for more info if not familiar with the term. Generally specialists considerably restrict the amount/frequency of taking additional painkillers because of this phenomenon.
Solvable asprin, maybe like a BC powder ?
Autocorrect got involved there somewhere. Soluble Aspirin I aimed to say. Not heard of BC Powder but yes, looks similar sort of thing,
Im still not sure im doin this right , you are the only one that answers me and i thank you so much. Is this just between me and you? Can anyone else see this?
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No no. We are on Open forum. Everyone who is logged in can see you. Lots are able to read this. You are doing it just great. There just arenāt many of the active posting types about at the moment for some reason. Happens that way sometimes. Itās gone a bit quieter than usual. Odd that so far nobody else has joined in but thatās just the way it goes sometimes.
If you go back to the Home Page where it says āWelcomeā,far right most probably, youāll see a visitors map. Click on it and you can see a list of recent visitors in real time.
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