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I Don't Know How Much Fight I Have Left


#8

Thank you, Dizzy for life. I’ll definitely read the articles you sent me. And thank you for sharing your own feelings.

I know that it’s natural to feel swallowed up by an illness that robs you of so much, but boy, that doesn’t make it any better. Never the less, all of your support makes each day a little easier, and I’m so grateful for it.

Thank you.


#9

I feel your pain! I am a mother of 2 young kids and have been battling this for going on 10 years. I have times when things are good and times when things are awful…like the past 6 months. Keep your chin up!


#10

Hey MgStegner, I know how tough it is like you do, and too am determined to persevere because some things DO help - mainly avoiding caffeine, inflammatory foods and eating magnesium, B2, CoQ10 - and Petadolex brand butterbur. Gabapentin has helped me too, but I think it might be giving me acne and bloating me. I don’t need problems! ha What if any supplements and medications do you take? Do you find certain foods/drinks make thinks worse for you? Any insights would be much appreciated from someone who has been functioning with MAV for a while…I’ve had it for three years now. :frowning: xx


#11

I wish I had some really good insight, but I’m sort of at a low point right now and have been having a rough 6 months. I’ve noted over the years that certain foods and alcohol are major triggers. For years, some months I could handle a few drinks, but over the last 6 months even one sets me off and I have to go to bed. Another huge one for me is MSG and soy, which is a major bummer because Asian food has always been my favorite. And MSG is so hard to avoid because it is put in so many things for added flavor and not always listed properly on labels. Almost all dressings have it, so even having a salad at a restaurant has become a no-no. Another trigger for me is exercise. I have always been a big runner…my favorite form of stress relief and alone time…but over the last couple of years it started to make me feel horrible once my run was over. I quite last September when I just couldn’t take having to come home and collapse on the floor for 30 minutes after every run until my head calmed down a bit. Even a medium paced walk sets me off now. :frowning: Currently, I am trying a low dose birth control to see if it will help with the migraines with auras I get right before and during my period, and have been on a calcium channel blocker called Amlodipine for about 2 1/2 weeks to see if it helps. I do think I’ve been having more good days than bad recently, so something seems to be working. However, I went out to eat with my husband last night and something in my dinner set me off, so after about an hour the lights and loud noise in the restaurant just became too much. With that said, I find that I usually start feeling bad around dinner time and pretty much just have to put up with it until I go to bed. I don’t know why that is. I have been taking a low dose of Klonopin at night for a few years now, which fortunately and unfortunately has been my one true form of relief because it helps me get a good night’s sleep. I’ve also been on Lexapro 10 mg for over 4 years now. And like you, I take magnesium, B complex, and butterbur on days when I need it. The one last thing I have never tried is to come completely off of caffeine. I have, however, switched over to green tea…one cup in the morning, and one in the afternoon if I feel like I need a boost. I may try to cut it completely out starting next week and see what happens. At any rate, so nice to talk to others who are battling this same thing. My husband is very sweet, but I can only talk about it so much with him because he gets very frustrated as he just wants it to go away. Good luck to you and keep me posted on how you’re doing!


#12

Hi
I can completely relate to everything your all saying …ive been in living hell for 14 years now. Im currently under the national hospital for nurology in London and have tried various differing drug trails. Nothing has worked :confused::confused:
Around a year ago i started to get depressed about it all and suicidal
I was sent to see a therapist who explained that we are only human , we don’t have a infinite amount of resources to draw from…like a bucket that’s slowly being emptied. .i lost all my hope in of finding a cure.After 13 years my positivity has run out.
Although it helped to talk about it im still depressed.
Ive been referred on for something called "commitment and acceptence therphy.
Apparently this is gonna teach me to accept that some things you can not change.
I will keep you posted.
I want to tell you all chin up but it would be unfair as i cant myself.
Ive had to give my partner all my tablets to lock away as i cant trust myself tonight…i really cant live like this anymore but know i cant let it.beat me …im not a quitter :confused::confused::cry::cry:


#13

Hi Sarahat,

I’ve been there many times too. Try to find something you love and do it. I horseback ride now that i have my symptoms under control with gabapenin and it’s really important to me. I want to do some good in this world even though I got sick, and that’s something I remind myself too. Try to live for someone or something else.

We’re not in excruciating pain most of the time (although I know how bad the symptoms can be) -and that’s what I tell myself. I know that this is a very hard problem but if you get really desperate try to avoid all artificial lights during the day - that was my backup plan (like moving to some place in the woods with candles!) but right now Im doing ok with the artificial lights because i’m on gabapentin at 200mg 3x a day and taking magnesium glycinate 2x a day at 400mg and also B2 and 400mg.

All of that together makes me not dizzy and I can function almost as well as before MAV hit. Have you tried gabapentin?? It is the only drug I could tolerate and that actually gave me back a sense of stillness-but only at this low dose. It may be having some side effects perhaps somehow, but I dont know what they are and I’m okay with taking this drug to live my life…whatever the sx they are ones I can tolerate.

I feel pretty much like myself on this drug - if not a little bit more open to people and less anxious. The main thing is to remember that mav is so bad but it also is a gift in a way because it makes you realize how trivial a lot of things are. Since getting mav, I’ve learned to value the times I feel OK much more than I ever did before I was sick. Even when sick, I think I’ve learned how tough I can be to push through it and I feel stronger for it. We’re very strong people to have survived these symptoms and we can do it.

Medicine really helps too along with the supplements. Try to eliminate caffeine and other high tyramine foods that increase the symptoms…nuts are a big trigger for me. Anyway, it’s also great you have a partner. This hit me so young… I guess I look at this like it’s kind of like someone who is blind or deaf- you learn how to adapt and move on with your life.

Our problem is invisible but that’s the way it is. Remember there are lots of other people who have mav and we all have to support one another. I think it’s nerve damage from a virus. Perhaps one day doctors will understand it better.

I do have a glass of wine or beer at night since that helps me chill. Try the gabapentin at least if you haven’t already… xx

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#14

P.S. Do you have a pet, Sarahat? Sometimes dogs and animals are the most therapeutic things to be around. I know that being around horses is hugely helpful to me. I want to get a dog (like a rescue dog- no pun intended!) :slight_smile: next year if I can.

PPS. I sometimes think becoming a bit more spiritual helps too, if you’re open to that. I believe that there may be a God and I try very hard to remember how much Christ suffered on the cross and how much there are other people suffering much worse than I am. I try to be grateful despite this problem. It’s hard some days (VERY hard) but I try anyway…


#15

Hi
Thanks for your reply.
Im on high dose B2 for the next 3 months ,then trying oestrogen cream then another drug.
Ive tried various drugs including Pitzotifen,fluranazine,topomax
I tried magnesium and the exclusion diet.
Not tried gabapantin , maybe its not recommended to me because of my other health problems?
Aside form MAV i have arteritic feet,a cardiac problem and hypothyroidism.Im strong and have coped over the years but ive got to the end of bucket of paitience.
I cant look at it as a gift ,im probably about to lose my job as im off work more frequently with it now.
this all started when i was 29 im 43 soon…over a decade and im no better.It took 8 years to get a correct diognosis.
i think because it is invisible no one believes me or understands what a huge impact it has .
im hopeing the therpy ive been put forward for will help.
I have a cat who i adore but when the attack strikes my hearing is supersonic and even the funny crying he does at the birds goes straight through me !
I try to think of others and think that im lucky but the impact on my life is so great i cant hande it.
I did beliieve in God but I dont anymore . Ive tried to do good in life ,used to bake cakes and sell them for charity every week etc but i have bear given to big a cross to bear for too long …
:cry:


#16

Im in such a state about this today i dont know what to do or how to stop crying …
someone wave a magic wand and cure me …Ive had enough…


#17

Hi Sarahat, I’m not having a great day either and just did something incredibly stupid with a guy I had dated and basically took it out on him again. Anyway I know what you mean about God and everything. I try to keep pushing on. I know that gluten seems to trigger stuff and gabapentin does help me - but eating trigger foods bring some pain back. Gabapentin really helped though. Why not just try that before getting too much more freaked out? Even the lowest dose of 100mg 3x a day really cut the dizziness and stuff for me. Have you tried upping magnesium to 800mg a day (400mg 2x a day) - that seems to help me more than 400mg. I take magnesium glycinate. B2 may or may not help me as well. I don’t know. xx


#18

Its very hard for the people that love us , my partner of 18 years was so stressed at how upset i was today he rang my GP…my mum rang in the middle of a crying fit…my gbf and my bff rang …They are all lovely …if love cured vertigo i would be well!! I let my vertigo get to me and in turn hurt them all.:confused::confused:
if this bloke likes u he will forgive and understand.
Im under the nurology hospital so think i will discuss gabapatin with them…tried so many pills i rattle!
I tried cutting gluten for 6 months before and it done nothing. I get attacks every 35 -37 days so im on the hormones to blame train right now . This attack im in the middle of now is unscheduled\extra

In 8 weeks I’m gonna try estrogen cream.

Thanks for replying i don’t think anyone that has never had this has any idea how dibilatating it is :confused:

X


#19

I totally know how you feel Sarahat. Yup. I went riding today (I lease a horse) and everyone thinks I look normal but everything is harder with MAV (I have only told a few people in my life about this problem…hard to mask it actually but I have tried in the hopes I’d get better somehow through drugs or diet…)

Mainly I have to get over the anxiety like that guy who wrote above about how he has been OK and actually done things he might not have with the MAV… I do think that MAV has opened me up to people in a way I never used to be. I just want to live life as much in the ‘moment’ as possible now…while sort of planning for the ‘future’ (Although I really dread the idea of not getting well to enjoy those days fully).

I am feeling OK on gabapentin and magnesium but today was worse because of maybe something I ate the day before. My sister swears she gets worse attacks (she too has it a little ) from gluten. But I don’t know. Yes I do take this problem out on some people, mainly my family and guys I’ve dated but I’m trying not to do that anymore. Half the time I feel like I’m going crazy with this problem. It’s hard not to be feeling like the majority of the world…but I do realize that other people have problems that are worse… my friend has Meniere’s disease and he gets REALLY acute attacks of tinnitus and vertigo. I’d take the swaying I think over roaring tinnitus…

My sister deals with this problem of MAV a lot better than i do. She has it a little less bad, but I am a ‘type-A’ personality and was a perfectionist before so it’s just really hard not to be striving to be perfect anymore. I do think that it forces us to take better care of ourselves overall, though I do loath the idea of stuffing myself full of pills. Will try the butterbur again tomorrow to see if that helps things feel better… I also read something about alpha lipoic acid helping at doses of 600mg/day for peripheral neuropathy. I’m curious if it might help our nerves recover in our heads…

You’ll get better I swear - you just need to find that right mixture of drugs and supplements now. Try the gabapenin if you haven’t already. It’s good. I agree that no one gets this problem unless they have it though…including therapists and doctors. It’s an alternative reality we experience. I’m doing a lot better than I used to, but I do think drugs alter my personality a little. Gapabentin is the only one that actually had a good effect on my personality though. Definitely an anxiety reducing drug. xx


#20

PS This is what I posted a little while ago about ALA. I’m going to give it a shot before the butterbur as it seems less toxic (though petadolex is ‘supposedly’ safe) : http://www.nyheadache.com/blog/alpha-lipoic-acid-alpha-lipoic-acid-relieves-migraine-headaches/

Another interesting website discussing dairy/gluten/eggs and other food sensitives. In some of the comments below the article there are some interesting insights too. Lots of people have our problems : http://drhyman.com/blog/2013/12/27/5-steps-solve-migraines/


#21

Just reading your post from April. I feel like you and I are in the exact same boat due to mine starting when I was 29 and I’m now about to be 40 in a month. Mine seemed to turn on just like a light switch…out of nowhere…and has never turned off since. Wondering if anyone else feels this way about how theirs started? I forgot to mention in an earlier post from today that I went on low dose birth control for a while, which seemed to help. Problem was I gained 12 lbs in 4 months. Ugh. I’m now using progesterone cream from day 14 through the end of my period, but I’m only on my 3rd month of trying this. Not sure if it’s working or not yet. Would love to know how you’re doing!


#22

Hi Margret
Firstly i need to tell you im in a much happier place mentally than i was in April and coping much beta with the condition. …i had ACT therapy and to be honest in the last 10 years has been the only thing that’s helped :grin:
I too started with this really suddenly at the same age you was ! …
1.Did you have migraine as a teenager that went away ? They think that hormones are to blame :confused:
Go mad when yr growing. .get better then come back as this.
2.The nuro hospital concluded that my MAV has a strong hormonal influence. …the attacks don’t correspond with my periods but happen every 36-38 days…ive worked out that this is around the time i ovulate ( apparently this only occurs every other month at our age ) .
The chain of thought is that highs and a huge drop of oestrogen causes the migraine leading to the vertigo …this maybe way the prostengen is not helping you ?
3.my gp wont let me have the pill as he says women with migraine are in danger of stroke with the pill .
4.i did try oestrogen cream but the max was 10 days use…this stopped the attack happening when it was due but as soon as i stopped it the attack started ! !
5.Try keeping a calender of period days …dizzy days and look out for signs of ovulation ( Google it …temperature taking is a goodun ) see if there’s any patterns.

Im just praying for an early menopause. …I reckon all this will stop when my hormones drop out !

I hope this helps you…good luck hunny …keep positive
Xx


#23

That’s so funny! I just told my husband the other day that I wish I would just go ahead and go through menopause. Maybe the nightmare would end. On another note, I will say that I felt pretty good on low dose birth control and my obgyn said you have to weigh the benefits vs the risks. I would’ve stayed on it longer, but I was continuing to gain weight, and that was doing nothing for my self esteem. :confused: Keep me posted on how you’re doing! So glad to hear you’re doing so much better! I was in a really bad place with it all as well last year until about June. Finally, got a break and a combination of meds that seem to help tremendously. :slight_smile:


#24

Morning Margret
We must be the only two women in the world actually looking forward to the menopause ! LOL

I think that’s a very good way of looking at the meds to weigh the benefits and the risks.I might try to talk to the Nuro hospital in April about low dose oestrogen maybe.
What other meds are you on ? What have been the effects / side effects ?

All the differing meds Ive tried have had side effects in way one or another .Flurazine made me balloon!
Im not convinced anymore about medications,dont know if its related but i developed a low thyroid whilst trailing differing meds.
Now on thyroxine for life .
If you keep gaining weight now matter what you do it maybe worth having a thyroid blood test…Another joy that comes with our age apparently!!
Take care X


#25

I know. The weight gain coming along with getting older is just icing on the cake, right! :wink: I quit the birth control a few months back, and am currently applying prescription progesterone cream from day 14 through the end of my period. My obgyn thinks I’m estrogen dominant which causes migraines in many women. It seems to be working…December was a fantastic month as far as feeling well…but being only 3 months in I can’t say for sure! I too have tried lots of different meds prescribed by my regular doctor and specialists, but most didn’t work and many had bad side effects. I’ve tried Topamax, beta blocker, blood pressure medicine, prescription diuretics, Amitriptyline, and others I can’t remember. Those are just the most recent. I currently take low dose of Lexapro and have for years due to the anxiety this disorder causes. (For years doctors just thought I was having anxiety even though I kept telling them my anxiety was due to feeling like I was on a boat 24/7 and almost constant headaches with fullness in my ears.) Things got pretty bad for me during fall of 2015 and I was put on Klonopin at bedtime…lowest dose…and an Ativan in the morning. Fortunately and unfortunately, this combination seems to have turned my life around, but I fear being on those meds forever as your body gets addicted to them. I’m so paranoid that I only take 1/2 to 1/4 of an Ativan in the morning now, but haven’t attempted not to take one at all as I can already tell the difference when I only take 1/4 vs 1/2. Anyway, as I’ve told others I by no means recommend those meds to anyone. It’s just where I’m at in this crazy process of trial and error. :relaxed:


#26

Hi Margret
How are you getting on with the progesterone ?
I’m going to try the mini pill in December back to back so that I don’t get any periods for 3 months and see what happens.
I’m hoping this will be my miracle cure as now the attacks are coming very frequently and are a lot more severe in intensity .
I’m thinking about going on some kind of anti depressant as I spend a lot of my life at the moment on edge waiting for the attacks to happen and feeling extremely depressed about it all .:0(
Sarah x


#27

Just wanted to share an article (guideline) if you do not have a diagnosis and the treatments are not helping.

http://www.jvr-web.org/images/Vestibular_paroxysmia_Feb2016.pdf

Could it be the above? Check it out. Try keeping a diary (including exposure to low frequency sounds & minor head jerks as in car rides) to figure out the precipitating factors. I had it for 4 years nonstop (even in my sleep) and currenly I do know that sounds and the tiniest head jerks brings back my symptoms after being free of symptoms for over 30 days last month. So, don’t give up. Good luck!