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Why people don't get well


#28

Hi Sarahd:
I am still struggling with MAV. The medications I have trailed are Valium, Mecklazine, Propanol, Nortriptyline, Topamax, escitalopram, and there is another one I tried but I can’t think of the name. I have also tried every natural and holistic medication out there like butterbur, magnesium, ginger, ginseng, phosphorous, vertifree, st.Johns wart, rosemary, etc…
I know you have also struggled and I am sorry you are going through this to. I am also seeing another doctor. Have you had a lumber puncture? I have to walk slow or I will fall because my dizziness is bad. I also am dealing with a weird type of short term memory loss along with slurred speech which makes me nervous.

Katie


#29

hi katie- the memory loss and slurred speech dont seem like mav to me? what does your neurologist think of these symptoms?


#30

but if dizziness is migraine, then why has every med prevented my headaches but not even touched the dizziness? i think they are 2 different entities- related but they obviously affect the brain differently- otherwise i would be 99% well.


#31

Hi Sarahd:
I just noticed my speech and memory loss a week ago and thought it could be the med I am on, but in all caution I am making an appointment with my doctor about it. You bring out a good point as to why the medication you have taken helps your headaches and not your dizziness. The dizziness is the most exhausting and disabling symptom of it all. Is your blood pressure normal?

Katie


#32

yup my blood pressure is normal, why do u ask? what med are you on now? i think topamax could cause the memory issue but im not sure about the slurred speech that is concerning. when i tried gabapentin it actually really affected my memory for awhile to the point where i couldnt remember what i watched on tv on what nights. it actually got better though after being on the drug for awhile and my memory went back to normal.

it bothers me that drs. treat this the same way they treat headache bc it is so random and less successful then the heachahes but i guess they just dont know enough about the problem and dont have more specific meds for it. its like throwing darts at a dart board with ur eyes closed and seeinng if anything hits the board lol.


#33

Sarah,
I’m sorry that you have had such a rough time of it. Have you ever explored trigger points? Getting rid of these have been one of the many things that have helped me.There is an excellent book which has a really good guide to releasing them yourself.It takes some time and practice but you will probably be surprised at how tight the muscles coming down from the skull to the collarbone are.The sternoclasmoid muscles.

A book I recommend to a lot of people is Clair Davies-’‘The Trigger Point Therapy Workbook’’
If you go to Amazon and click on look inside and type in vertigo that section of the book will come up,it has good visual references.You can pick up a used copy for around 12 bucks.

Give it a go!

(NB from admin: these images link to products members have found helpful and at the same time help fund the site: As an Amazon Associate I earn from qualifying purchases. Thanks for your support!)

“The Trigger Point Therapy Workbook”
More recommended books here

#34

Just to add for me my dizzyness is like visual problems its the last symptoms to improve and often for me the migraine needs to be completely stopped for a while before i can re teach my balance. It may be that your headaches are improving with severity but maybe not with frequency and thats why your dizzyness doesn’t improve. For me i have had many meds that have completely destroyed my balance. I ended up with a walker then a wheelchair and then i couldnt move at all, i couldnt talk because i could never remember what i was saying, i was extremely sick. We stopped all trials and i slowly added the one med that i saw some little improvement but had heart problems with and although im stil having daily mod to severe migraines i dont need my walker or wheelchair or cane. I am now re adding topamax. For me it can be purely adding the wrong med at the wrong time that can make a person completely fall apart. This whole trial a med and if it doesn’t work just stop doesnt work for me, i dont go back to baseline it always changes me usually for the worse. I now cant survive without a med in my system otherwise i will be back to non functioning within two weeks.

My specialist also has always said he cant tell me if i will ever get better he just hopes he rid me of my migraines and vertigo. He says 80% of people go on to live a normal life and another 20% struggle to find meds and even with meds may not do well regardless of how well tailored their treatment plan is.


#35

— Begin quote from “sarahd”

but if dizziness is migraine, then why has every med prevented my headaches but not even touched the dizziness? i think they are 2 different entities- related but they obviously affect the brain differently- otherwise i would be 99% well.

— End quote

Assuming you have the correct diagnosis and your dizziness is indeed migraine/MAV, it has been explained to me that some meds may work better for a person on certain aspects of the migraine condition over others, and/or different symptoms will improve at different rates. That is what drove me to one of the “big guys” in this disorder - my headaches and auras were improving but not the daily dizziness. It made me think there was something else going on. While I do potentially have some uncompensated damage, it is primarily migraine and I am learning to treat it as such. No two patients are alike, and it makes treating this crap so difficult.

Have you gotten additional opinions on your case from other doctors? Maybe a new clinic is the way to go if your current team is giving up on you or not willing to work with you.


#36

Hi James,

No I’m not familar with trigger points really is that when u have tension in your neck? I know when my neck gets tight either from using the computer or from tipping my head down too much it makes my nausea and unsteadiness worse. I have some basic pt stretches for my neck that i do but that is about it. Would a PT know about this or who do you see for that?

Wow Becky I think you are the first person i have met who has also gotten permanently worse from meds, im sorry to hear that. how did you end up going from the wheelchair all the way to walking on your own again? are you able to work at all? what type of living situation do u have? what meds have u tried?

As far as getting other opinions I have seen several people and am already seeing a supposedly experienced guy at a big research hospital. I honestly dont know where else to go nor do I think it will make a difference at this point. I mean the meds are what they are and there doesnt seem to be any other potential diagnosis. after 3 years of battling this and just getting worse i dont know that i have the strength to see someone else. With my insurance I think I also have to stay within my state (massachusetts) anyway. i dont know how to accept that i went from being able to walk on my own to i know a wheelchair because of my treatment. I am curious to know how many others on here have to use walkers or wheelchairs? Anyway thanks everyone for your advice i appreciate it!


#37

Sarahd hopefully scott will jump in here re the trigger points as I know he’s had a lot of success from having a PT who is good in this area work on his. I don’t think all PTs are really up on trigger points thoough so you might have to shop around


#38

Verapamil helped me just 180mg, i went from
Not being able to even sit up, then everyday on the med i made a goal within the firsts week i was making it to the toilet and down my hallway, everyday i had a goal and i worked towards it. I am 24 yrs old with two small children, im a stay at home but i had my kids in care and with my family. For me life was therapy, being a mum was therapy but it was combined with a med that helped a little. I then went back to being bedridden the entire dec in agony so im working my way up again on topamax. I have trialled ami, nort, verap twice, topa twice, prop, cipralex or something, pizotifen and i take Valium and maxolon when needed. I ended up in hospital because i was so sick from the meds. I still cant drive most days, still cant go to shops or walk across grass etc but i am not getting thrown to the ground up to 5 times a day like i was which was so scary.


#39

And no i havent been able to work for the most of 4 and abit years i have had this. I am now on disability, because waterston doesn’t know how much better i will get.


#40

Just remember if you do use a walker or wheelchair, for me once i found a med that helped just a little within weeks i went from not being able to move to walking on my own and sitting on my own, ofcourse im still terribly sick but this illness can turn around very fast for the good or the bad :slight_smile: with meds.


#41

— Begin quote from “sarahd”

Hi James,

No I’m not familar with trigger points really is that when u have tension in your neck? I know when my neck gets tight either from using the computer or from tipping my head down too much it makes my nausea and unsteadiness worse. I have some basic pt stretches for my neck that i do but that is about it. Would a PT know about this or who do you see for that?

Wow Becky I think you are the first person i have met who has also gotten permanently worse from meds, im sorry to hear that. how did you end up going from the wheelchair all the way to walking on your own again? are you able to work at all? what type of living situation do u have? what meds have u tried?

As far as getting other opinions I have seen several people and am already seeing a supposedly experienced guy at a big research hospital. I honestly dont know where else to go nor do I think it will make a difference at this point. I mean the meds are what they are and there doesnt seem to be any other potential diagnosis. after 3 years of battling this and just getting worse i dont know that i have the strength to see someone else. With my insurance I think I also have to stay within my state (massachusetts) anyway. i dont know how to accept that i went from being able to walk on my own to i know a wheelchair because of my treatment. I am curious to know how many others on here have to use walkers or wheelchairs? Anyway thanks everyone for your advice i appreciate it!

— End quote

Sarah,
The nice thing is you can work on them yourself,you just have to find them.I really recommend the book.Take a look inside if you are a member of amazon.


#42

I think the qustion is misleading. What is “Well”?
I wanted to add one more thing to the mix that I sorta touched on in my 1st post in the thread and that was other illnesses. When a person has more than one thing going on medically, then things can get complicated, and finding solutions become limited.
In my case, I have very low blood pressure which excludes me from two types of drugs. I have calcium issues so I can’t take calcium channel blockers (so there goes the 3rd group).
Then there is my bactrum allergy which excludes me from yet another group(4th). I am out of groups.
However, my migraines are so bad we decided to try to see if I could live with other side effects if it meant it help ease my pain. Zonegran is supposed to be one of the drugs I am not suposed to be able to take with my sulfa drug allergy, but so far so good. I carry meds with me at all times just in case I hafe an allergic reaction, and to me it is a little scary but worth it. I an not there yet, but I think this med might be helping.
Anyway, I guess my point is we are not all the same, so drugs won’t work the same for us, and for some of us they might not even be an option at all.
So,what is getting well? To what degree of change or comfort do each of us define “well”? I guarantee you we won’t give the same definition. That word is relative, and as you can see by the many resonses already, it’s a loaded questestion.


#43

becky did the verapamil just stop working? were u able to increase the dose at all? did u need pt to go from a wheelchair to walking on your own? i imagine it would be hard bc u would have lost a lot of muscle strength from being in a wheelchair. i cant imagine having this and having a family and little kids, that would be an unbelievable struggle. im sorry to hear you are still struggling esp after getting a bit better, i hope the topamax works out for you!

i agree lucille if u have other problems then treating this is even harder. i have terrible fibromyalgia, anxiety, depression, and ocd, and the meds i want to take for these (gabapentin and ssris) just make the mav worse it is a total disaster. i cant deal with my whole body being in agony and the mav at the same time. also lucille that is terrible to not be able to try a lot of these meds that certainly makes things much harder. i am supposed to start a beta blocker i have asthma and depression and they could get worse but i just have to try it and see. at this point i am much more worried about my balance getting worse.


#44

Yeah im on my max dose of 240mg but i think its causing me more migraines at this dose then less. No i dont believe it stopped working i just believe i was going i to remission from a relapse with verapamil that helped a little bit. I have had physio heaps before so i knew what to do, my muscles were weak and still are but not like they were, when i was stuck in bed i did do leg exercises to try to maintain muscle, but it doesn’t take long for it all to come back.
Goodluck with your journey it can be a nasty one at times and i can totally sympathise i often read here thinking i dont fit in here because i am such a severe case, but what kept me hanging on was my specialist every appointment or phone all would say just hang in their a bit longer, i know its tough it keep hanging on.


#45

Sarahd…

Sorry to hear you have never improved.

However- can you list what medications you have tried and at what doses and for what length of time?

Also, do you have constant stress and hormones fluctuating that can be influencing this?


#46

Hi MM,

I honestly have tried too many to remember them all. the non-mav meds i have tried are prozac, lexapro, zoloft, abilify, seroquel, seroquel xr, savella, xanax, klonopin, valium, ativan, etc. the mav meds that i can think of off hand that i have given at least a month but if i could tolerate them then 2 months were lyrica, depakote, effexor, gabapentin, topamax, norvasc, and nortriptyline. im sure there are others but i cant remember them.

Hormones/my period seem to have no effect on my symptoms. As for stress yes everyday all day is one long panic attack for me, my heart pounds and my mind races all day long. i feel i have to be on meds to get the anxiety under control but i cant tolerate any that will work. I also have horrible chronic pain and couldnt tolerate any of those either. i am supposed to try atenolol next but am terrified what if i cant walk at all what am i going to do??? some days i think i should just give up and get a wheelchair and move to a handicap apartment and just be done with this and be able to take the meds i need for anxiety and pain.


#47

Wow that’s a lot of drugs to try, but it would be really helpful to know what dosages of the lyrica, depakote, effexor, gabapentin, topamax, norvasc, and nortriptyline you’ve tried and over how long.

If you don’t know, how can a doctor help? It may very well be that one of these drugs CAN help you, but you need to work on a low and slow basis or on a combination. Have you ever taken a combination? Rather than just being pulled off one and onto another?

I’m so sorry you have the anxiety you describe, it sounds horrible. Do you think it could be feeding everything??

I really feel it would be good to unravel everything, wipe the slate clean and go again with you. Everything seems so jumbled, perhaps it’s best to just start from the beginning again?

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