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New here ... looking for reassurance


#61

Very true!


#62

Im with you there Amylouise…i couldnt have coped without my partner either. Its hard enough for us MAVers to get our own heads around having migraine 24/7 never mind anyone else but he has educated himself about it as ive struggled almost 4 years with this.

Jo xxx


#63

Thanks for the reply , so you also get the snow too? I agree your right it is annoying it’s just very ramped up when I’m outside if I look far away everything looks like it’s shimmering so it can be pretty u bearable . If I had something to take Away the derealisation tho I think I could cope with the snow . So Effexor helped this for you? I have heard good things about Effexor but my neuro said it’s. A hard drug to wean off so he wouldn’t put me on it :confused:


#64

I 100% agree jo and I’m so sorry to hear you’ve battled for 4 years my heart really does go out for you . But if it’s any constilation my neuro said he’s seen people that have suffered 10 years and been cured so there is hope :slight_smile: x


#65

No worries :slight_smile: yes I get sparkles too, mostly in the sky and bright backgrounds. Still annoying.

That sounds terrible with regards to your derealization episode :frowning: you’ve been through the gauntlet. I also get numbness and tingling in my hands and feet (usually on one side of my body) with these as well. My mouth/lips too! Very weird but normal with regards to migraine.

Patience is most definitely needed with these medications because of the side effects and time it may take and that no single person is the same.

I am in the U.S., yes and CBD is legal. I would highly recommend it - I haven’t had an anxiety attack in a week or so and feel much more calm about the condition. I still have dizziness and disequilibrium but time will tell in how it helps. I think removing any extra stress/anxiety can only help us. There isn’t any negative side effects reported with using it.
I am currently taking PlusCBD oil supplements - they seem to be working for me so far. I also have Charlotte’s Web oil that I plan on trying as I’ve heard it has solid reviews as well.

Here is a good website with some ratings on CBD oil - https://www.ravereviews.org/health/best-cbd-oil/

And this is what I currently take: https://pluscbdoil.com/cbd-products/cbd-oil-capsules/pluscbd-oil-capsules/

Charlotte’s Web Oil and Supplements - https://www.cwhemp.com/cbd-hemp-oil-extract-capsule

Charlotte’s Web is a well known brand, as is PlusCBD (it is distributed by CV Sciences). I take 1 10 mg capsule in the morning with food and 1 10 mg at night. Everyone takes different doses, you kind of trial it and see how it feels or how much you will need. With the oil, you could start out with a couple of drops and then up to half a dropper full and then go from there (morning + night). Let me know if you have any questions on it - I hope you can find something in the UK or your boyfriend can bring you some.

XX


#66

Yes I get that when I look at the sky too and lots of floaters :grimacing:

Ah yes America you can get so much more il ask my boyfriend to check out the ones you send and hopefully he can bring it over :grimacing::blush:

Thanks for the help here’s hoping we both make a speedy recovery :pray:t3:


#67

HI Elizabeth, sorry to cut in on this post, I definitely have nearly all of the symptoms you have Amylouise, so I empathise with you. I have had them for about 15 months and the visual ones are my worst. I have found Nortyriptyline to help with the head pressure and sinus/head pains that I get and a little with the visual stuff, but not completely. I am currently on 20mg Nort but came down from 45mg as the side effects were getting to me :frowning: Since coming down I do feel worse, so I will likely go back up. Just wondering though, I am about to try CBD oil for the first time and wondered if I can take it with Nort? Do you think this would be OK?


#68

Hi Jenny I’m so sorry you’ve had this for such a long time , could I ask what the side effect we’re on nort ? Have you maybe considered another preventative ? As for cbd oil I’ve used it with nort and been fine :slight_smile: so don’t think it should be s problem xx


#69

Appreciate I’m not Elizabeth. The visual stuff is awful. I’ve had everything except the visual snow, for a long time. If it’s ALL symptoms stemming from the hypersensitivity caused by the migraine, the migraine preventative drugs once you have reached the effective dose for a good time period will go away. Personally I’m still trying to prove this theory. I’ve got rid of most of them but not quite all. The secret is reaching the effective dose and sticking with it long enough. I wasted a year on too low a dose and it’s taken a year on a higher one to get my current results. If you’ve been on yr current med for 15 mnths I’d say to go back and ask for a review ASAP, maybe it needs upping or changing. Worth a check out, eh.


#70

Hi Jenny,

No worries at all. So sorry you have the same symptoms and for such a long time. I’m glad the Nort has helped you somewhat, that is good to hear. I could use something to help with my head pressure/sinus pain - the weather got me so badly yesterday. I agree with Amy - I took the CBD oil with my topomax and was fine. I’m not a doctor, but that is my opinion. I tried Nort as well, reacted badly to 25 mg. I know it can take time to find the right dose and titrating up and down can be SO difficult. If you’re finding some help with the Nort, maybe you will find that right dosage soon that really helps you with all your symptoms. I wish you the best.

Best,
Elizabeth


#71

Hey onandon03 could I ask what dose you found effective ? I really wonder how high a dose has to be my dr has said most need higher doses x


#72

Hi

The dose needs to be high enough to effectively control yr symptoms and that varies person to person. You then need to be on that dose for a good period of time for it to work optimally for you. From literature I was referred to my consultant it can be 6-8 weeks often before you see any progress and 4 months before they review it. Dose for migraine preventation in UK is maximum 160 mg/daily. Yr GP, if you are in UK, is responsible for yr health and how much you can take will depend on how it affects yr heartrate and blood pressure etc so you need to be guided by them.


#73

Thank you that’s really helpful :slight_smile: I only ask because I saw you wrote you were on a low dose and felt nothing until you increase so I was curious what dose you felt nothing on and then got relief at . I’m on 60mg and haven’t had a huge amount of relief as of yet :grimacing:


#74

Hi

I don’t think that can hv been me. I am very med sensitive so had to titrate up very slowly. I started off with 30 mg, in 3 daily doses and added in another 10mg each step with a minimum of 5 days between, more often a full week. At the time I was really ill. Totally incapacitated dizzy 24/7 and with the most extreme photophobia and the slightest exposure to anything trigger-wise would put me in bed without balance for a week at a time. Couldn’t keep my meds diary, look at TV/any screen, go outside, even get up and down stairs alone . Improvements too came so gradually you’d not really notice them for ages which sounds silly but is the truth. Individual Increments didn’t bring any sudden noticable change however slight. I think it was several months (3-4 maybe,) before I started to see slight improvements. My doctor has no idea about dosage and encouraged me to keep it low. Low as possible, and, my MAV symptoms did change periodically which left me thinking the increased dose was their cause. You may have read me saying I was on too low a dose to effectively control my symptoms for a full year. I can’t answer yr question. I don’t recall there was a moment when I felt, ‘that’s it, that dose is really doing something, I feel much better’. It didn’t happen like that for me. Sorry.


#75

The side effects I have suffered from the Nortriptyline are constipation, dry mouth, dry eyes and sinuses, dizziness at higher doses, fluid retention, weight gain and some troubles with pelvic floor. I have tried some other preventatives including Pitzofen, Propranonol, Verapamil and Amitriptyline. I seem to be sensitive to meds, so suffer most of the side effects. Thanks for the info about the CBD oil, I’m definitely going to give it a try :smile:


#76

Thank you Onandon03, I completely agree with you and think I have been up and down on the Nort too much for it to take full effect. During that period I have also been trialling other meds and have been having side effects from them. I really need to take stock and just try one thing at a time and give it an opportunity to work. Your comment gives such insight into overcoming migraine “If it’s ALL symptoms stemming from the hypersensitivity caused by the migraine, the migraine preventative drugs once you have reached the effective dose for a good time period will go away.” Let’s hope that I can find that right dose and that it will help me long term. I do feel that hormones may be at play for me too seeing I am in peri menopause. I am hopeful that time will heal and I will eventually start to feel myself again :slight_smile:


#77

Thank you so much Elizabeth_B, you are absolutely right, it is such a tough road when you are trying to find the right dose of medication that helps. Plus there are so many different ones to try. How did you go with the Topamax? My Dr and Neuro want me to try this next, but I am so scared of the side effects. I tend to have every side effect possible when it comes to meds, so it does worry me. All the best to you too, I know we can beat this :slight_smile:


#78

Oh, hormones. I blame them for everything, even the burnt dinner if you like. Dratted things!

From my (overlong) experience I’ve come to conclusion these preventatives might just need even more than the suggested times given and, unless it’s pure coincidence, they do go on giving more and more. Literature i was referred to said 6-8 weeks to get then going and at least 4 months before you give up on them, added in another, make changes. Obviously side effects have to be taken into consideration. You have to live. Read Dr Silver said the drug that gives initial side effects might be best long term, but he isn’t having to take them is he. Read DR Surenthiran team said ‘70% better after 9 months’ from attending clinic and presumably starting treatment. That sounds much like it’s been for me. Good luck.


#79

Hi Jenny,

Of course. It truly is and there are so many. The topamax ended up not being the best med for me, I titrated up starting at 25 mg for a week and then 50 mg on week 2 all the way up to 100 mg. I understand your hesitation with the side effects, they really weren’t all that bad for me in the first four weeks - mostly tingling in my face/hands/feet and loss of appetite. I could handle those fine. However, after a couple of weeks on 100 mg I noticed mood changes, and I was also not sweating as much so I overheated after trying to do some walking outside. Not sure if the overheating was related, but I decided to stop because I wasn’t seeing much changes in my dizziness.

Again, different for everyone so you might tolerate it just fine. As long as you are starting small dose and building up, that is fine. You’ll be okay! I just figure that we’re so miserable anyways, it is a b**** to trial but try and have an open mind. I actually thought I did better on the lower doses, so I advocated to go back down to 25 mg with my doctor. Still wasn’t seeing results so the negatives outweighed the positives for me. I recommend keeping a diary (I use a Google Sheets spreadsheet that is a calendar) and take notes on how you feel every day - you probably already do something similar but it is really good to note every day. I have a bad memory and every day can be a blur, so noting what dose I am/were on and what symptoms I had is really helpful for me.

Stay strong. XX
-Elizabeth


#80

Hey Amylouise

I haven’t been on the site for a while, so I’m just catching up.

Can this be MAV? Yep - your symptoms look exactly like MAV.

Light at the end of the tunnel? Yep. I’m about 14 months into MAV and I am about 80% better, and (touch wood) seem to be steadily improving (with an occasional setback). i was awful last year, i’m sure you know the feeling - like what the hell has happened to me, am-I-dying kinda thing. but I have been seeing Dr S for almost a year now. I am on Pizotifen + Gabapentin. The pizotifen helped straight way, but increasing the dose didn’t do much more after the initial improvement. I started the GabaP in January, and it seems that as i keep upping the dose, my symptoms keep improving (albeit very gradually).

Dr S is very good, although he does space his follow-up appointments far apart (like 6 months), so i just book in extra appointments if i’m having any problems or have questions about my meds etc.

if you are in a stressed-out state, my advice would be to recognise that this condition takes time to heal - so see if you can accomodate your life to allow yourself the time to heal. i was lucky enough that i could sell my company and take time off - although the sale was stressful, the ability to just chillout and get better has been immensely helpful. I’m well enough now that i’m planning my next business! although the next one will definitely favour a better work-life balance as I’m sure my mega-stressful work life was a very significant contributing factor.

The one thing i have found really hard is the instruction to ‘avoid exercise/undue exertion’ that Dr S stipulates. i really want to go out and crank a lot of miles and hills on my bike, but i have to take it easy. that said, i just spend a whole day bodyboarding with no ill effects whatsoever (but there’s no way i could have done that last year).

anyway, good luck and stay strong - this thing does eventually go away!