Hi all. Iām totally new here and suffering so much that I named my username āsufferingā. I started having mystery symptoms of constant motion sickness and nausea the year I hit menopause at age 53-54. I wondered if it was related to hormones. Long story short, after going to PCP, ENT, Audiologist, Physical therapyā¦for 15 months of getting dismissed by docs and my PCP treating me as if I was āmentalā and needed anxiety medications. I know this is not caused by anxiety! On the other hand all these horrid symptoms are certainly giving me anxiety!! I have hardly been able to function feeling horrid nausea and dizziness all day every day. (I work as a teacher and have a son).
After 15 months of going from one doc to the next, a friend took me to a local doctor from India. I wrote my list of symptoms and for the first time someone said I had āVestibular migraineā. Having sensitivity to meds, he put me on 50mg Topiramate in November. I took it for the 6 weeks like he said but it made my condition worse. I went back to him an in January he changed my medication to āLamotrgineā which is known to help with MAV. Iām now four weeks into it, titrated up to 100mg and no change. Same horrid symptoms feeling nausea and motion sickness and neck pain. I am miserable. He wanted me to double dose to 200mg a day after the first month on 100mg but I feel it is not doing anything. I feel if I go back he will also not be very supportive. I begged him to not give up on me. Iām so exasperated of seeing all these different doctors who just cannot figure this out. They seem to just ālabelā with this or that saying I have anxiety about health and Iām out the door. How many people have I made rich and self poor? I was even sent for an MRI which came back negative so they say thereās nothing āwrongā with me anatomically. I was left with a bill of $900 to pay after insurance coverage. (I live in the United States).
I have completely lost hope that I will ever get well. It is now 17 months, each time nothing has helped. I canāt travel, Iām waiting for years to take my son on a tripā¦Each time I go to the grocery store, I get nauseous. Each time I work on my computer (remote teaching) I get so nauseous I have to stop. I move from kitchen sink to stove, I feel sick. How can one function like this? On top I have a lot of neck discomfort/soreness/stiffness. Does anyone else have that as well? Iāve read that it could have a connection to this illness?
I recently discovered this website. I feel so grateful that here people have the exact same symptoms that I have and that I am not ācrazyā like docs make me seem because they just cannot figure this out. I am so tired of drinking ginger tea and taking ginger root pills. Not sure if they do anything but I would do anything to try anything! I just canāt tell you how it feels to discover all of you who are on this site. Iāve been reading posts before I decided to join. Iāve also been reading how Amitriptyline has helped so many of you so Iām thinking of asking my doc to try that medication next. Though I am very afraid of it making me sedated during the day. I have to work as a teacher. I can only work part time for now and I barely can handle even that. Please tell me the drowsiness from Amitriptyline goes away in time? I hope so. I will give Lamotrigine another 2-3 weeks. I made an appointment with a new neurologist for March (itās so hard to get an appointment) I am praying he is going to be supportive towards me. Up to now I have had absolutely no acknowledgment or support for my symptoms. I feel extremely down every day and in tears because Iām so exasperated of having the last year and a half with not one good hour. The quality of my life has reduced so much. I pray so hard each day that God will relieve me and find me some cure or relief for my symptoms.
Thank you for listening you all.
What state do you live in? Preventatives can take quite some time to work unfortunately. People are recommended to give them about 3 months to see if there are any changes. Iām sorry you are struggling so much itās a very frustrating and stubborn condition. Another option to try is Effexor if your finding the anti seizure medications to be difficult to handle. A dizzy specialist named Dr. Hain uses it as a first line quite successfully and low dose.
Hi Suffering !!
I felt so relieved as well when I found this forum. So relieved to know I wasnāt alone !!! I am still new into this MAV struggle.
Now, letās talk about dismissive doctors. My counsellor advised me to toughen up and not be emotionally triggered if a doc turns me down. It is a very good advice, know what you are fighting for
You know your symptoms, and you know what you have. It just take trial and error and, as you said, there are a lot of meds to try ! Amitriptyline is a very successful drug for a lot of people. You might try it and it could likely work ! If it doesnāt, then on to a new type of drug.
I donāt know if you have seen this chart by Dr Hain but I find it super useful!
Thank you for responding to my post. I am in the state of North Carolina. I didnāt know I should give that much time for my current Lamotrigine. I feel it should have done SOMEthing by now. At the beginning there were some hours I felt it might be working. Then back to the same. I am trading off my horrid symptoms for the horrid side effects of these drugs. One doc tried to put me on Sertraline (Zoloft) thinking that would get me all straightened out and I barely lasted 10 days on it because it gave me heart palpitations, restlessness and sleeplessness. I think SSRIs donāt suit me. I have heard of Effexor (Venlafaxine) but it is an SNRI so I am not sure if that will give me similar side effects as the Sertraline did. I would like to know if Amitriptyline is the same kind? Or is it a different kind than usual SSRI? Iām willing to go through a week of getting adjusted but it seems Iāve spent the last 3 months doing just that and still no relief. Plus the 15 months searching for the mystery sickness and waiting it out. Who is Dr Hain? Where is he? Is he a doc for this condition?
Thank you Marianne. Certainly good advice. I break down in tears feeling horribly sick each time Iām in a doctorās office talking about my symptoms. They basically ruin my each day and I want so desperately some relief. I canāt function like this and I canāt find the right help. Itās good to keep in mind to not be emotionally triggered. Thank you for that advice. I think Iāve seen that chart. I was taking Magnesium for over a year but it did nothing. I took about 300mg per night. Finally I was afraid it might affect my kidneys so I decided to give my body a break.
I am so relieved to have found this forum. I feel I hit the jackpot that somebody actually understands what I am going through. Nobody including my closest friends know how this feels. The sensitivity to sounds and smells is horrid. I didnāt know why a visit to the grocery store made me sick until I googled it and it turned out that it must be the light trigger.
Thank you for responding!
This site has a lot of very helpful information. There is a Facebook group also that is helpful called migraine strong-migraine diets, healthy living, and more. You can ask on there for specialist recommendations as well. Something I have learned from this site and the fb one as well as from my neuro is that migrainers have super sensitive systems. Medication should always be started low and slow to help mitigate start up side effects.
It also sounds like you also need a rescue medication to knock things down a few notches until you find a preventative that can help your overstimulated cranky brain. This is where finding a good neurologist experienced with migraine/vm, a neurotologist, or a really good ENT who knows VM will be helpful.
Hi, very similar story to many of us on here. I am on my 4th medication and over 4 years in and basically 100%. The first year or two was awfully bad. I remember being so depressed after the first year because there was no improvement despite lots of discipline/care - not fair! 365 days of dizziness and anxiety and depression and for what? what is the reason for all that suffering? And the 2nd year was similar although small improvements were made. 3rd year saw the biggest improvements. And 4th year things came back to ānormalā.
My best advice is to throw the kitchen sink at it and try as many parallel treatments as possible. Go through as many medication trials as you can to find the one or two that work best for you. Try abortives for your worse days. But there are many non-medication treatments out there. My favorite is Cefaly. I also like the Allay lamp. Migraine diet can help. If you are short on ideas, keep perusing this site or private message meā¦
The good news is the amount of treatment options in the 21st century! You are much better off fighting migraine now than any time in human history. I didnāt think Iād be able to recover, that it was hopeless, but I read so many stories of people that did and did with many different types of treatments. Just keep going, youāll get there!
Yes, I do have a very sensitive system. Good advice and I wish all doctors understood that I have to start slow and small. Yet when I ask they just put me on a dose which is higher than what I can tolerate rightaway. So Iāve decided to call and check with the pharmacist and I go with his advice, start on a low dose and then titrate up.
What is Cefaly? Where can I get it and what does it do? I am so thankful to hear your story. You did get light at the end of the tunnel. I have been so exasperated at feeling sick 24/7. It affects all friendships, activities, motherhood, workā¦I want so much to get better. I hardly take caffeine, only 1 cup of tea or coffee in the morning and a very tiny piece of chocolate. Canāt give up on those. I donāt know why doctors in my area are not familiar with this condition. The first neurologist I went to was horrid and threw the anxiety ātalkā at me and made me look as if I was a total nut. And then when I tried to ask and say something he said he had other patients to see. I went to him to find relief and left feeling extremely down. A person cannot function, obviously they are not feeling good, it does not mean they are suffering from major depression! I have even ordered these tint glasses I recently learned about. The first pair from Thera Specs that I paid over $100 for did not work. Now I have a pair from Terramed. It seems better. Everything is expensive when you have a special condition. If I canāt work as much, it affects my finances. Thanks so much for responding to my post. Reading your post is giving me some hope that maybe I will have better days one day. It just doesnāt seem so now.
Hello Suffering and welcome to the forum. Your story of difficulty finding diagnosis and assistance is unfortunately a regular occurrence with vestibular conditions. My own Personal Diary would show you I had similar but much longer standing problems obtaining a diagnosis. When it comes to rude and ignorant specialists you should even find a thread relating. If it helps any I have had far worse comments thrown at me on more than one occasion. Do what I did, just ignore it. Granny used to say āSticks n stones may break my bones but Words can never hurt meā. And she was right. Put it out of your mind, Direct your precious energies towards finding ways to improve your Quality of Life.
Two threads relating to Cefaly. If you put any keyword relating to VM into the Search facility you will find a wealth of relevant information including in some cases like this one even photos.
If you donāt get on with the Theraspecs you should be able to return them for a full refund unless their company policy has recently changed.
Thanks so much. I was able to return the TheraSpecs through Amazon. I truly think they are overrated and overpriced! The second company seemed to work better and for almost 40% less. Thanks for letting me know about the Cefaly device. Iām really glad to hear you are feeling better. I am waiting to do so desperately.
Again you will find threads relating to photophobia and Theraspecs and many people really rate them. Of course they arenāt going to help unless one is light intolerant. I live in the U.K. so had to import mine and went for both indoor and outdoor ones which, including duty payable here on imports meant they cost me nearly three times as much. I couldnāt tolerate the indoor ones, never even tried the outdoor ones and they sit gathering dust in a cupboard here because I couldnāt be bothered with all the hassle of returning them. As you say all the extra āequipmentā needed can prove costly. I try never to calculate how much I spent on various Alternate Therapies from Alexander Technique, physio, vision training then VRT and all the private consultations with eye specialists, neurologists, MRIs etc but oftentimes thereās not much choice. You just have to give it a go.
I canāt tell you all how ācomfortingā it feels to join this site. I have been going nuts with my life not able to function with all these horrid symptoms. Iām on Week 5 of lamotrigine (titrated up to 100 mg took 3 weeks and doc wanted me to start right off the bat at 100mg) I am glad I talked to my pharmacist who told me it can give you a rash if you start at a high dose. Doc wants me to stay on 100mg fora month and double it after. Iām feeling skeptical about doubling if Iām not feeling relief at 100mg.
Just the nausea that starts up everyday all day long is horrid. I have to stop all activities when dizziness and motion sickness starts. Does anyone know if Amitriptyline helps with motion sickness and the screens, sounds and smell sensitivity?
Thank you turnitaround! I am new to the site and not sure how to navigate it properly. Plus many posts are from many years ago and I wasnāt sure if anyone would be active on it to reply to me.
It helped a lot that you pulled up the post about Amitriptyline! I am in a dilemma whether I should ask to come off Lamotrigine now and give try to my 3rd medicine! Iām not sure how long I am supposed to wait to try out a prescription to see if it works. I started Lamotrigine on January 6th and almost 2 weeks since on 100mg. I just want to get better and each day is hard to take. None of the docs I saw totally understand my condition so calling their office back doesnāt help. They just push me out to the next doc who has no clue either. And just think each time it takes 1-2 months to get an appointment. Itās been 17 months I have been suffering and it causes me to feel so down too and alone with it. Schools are going back to in person instruction so walking around campus is so dizzying. I need hope so badly!
Hi suffering
Your not alone i had exact same story! Eventually got a combination of HRT amitriptyline and flunarazine. HRTcan take a whole year to get to the vestibular system.
Wow! HRT? Was it from the neurologist? The neuro I went to see was horrible. He made me feel worse and told me I suffered from some āloonyā illness and I should get help for that!!!
I went back to a new PCP and he is now treating me. But he keeps saying that I should see a neuro as they have the latest techniques. What latest??? It doesnāt help. Iām exhausted of giving weeks and not living life properly just to see if a medication works or not. Then on to the next. This forum is helping me a bit to cope emotionally knowing I am not a āloonyā experiencing this and that these are ārealā physical symptoms and an illness noone seems to know much about. Thanks for your post!
Your doctors must have some knowledge. They have certainly pushed you straight on the toughest of drugs. Lamotrigine has a fantastic reputation for the vestibular stuff with this condition however very few prescribe it mainly i suspect because of The Rash. Topiramate is considered one of the top three favourites here in U.K. at least but unfortunately 20% of people according to medical papers cannot tolerate. On here we might just assume the figure is higher than that however. On average most preventatives are expected to take several months, 3-4, timing from once you reach the optimum dose which incidentally one only comes to know retrospectively, so itās no Quick Fix. Amitriptyline is another of the U.K. top three and apart from making most people very sleepy much of the time is probably kinder and with a good reputation for effectiveness. You can use the Search (little magnifying glass icon) to find out most information you may want. Donāt worry about the age of the thread. Just add to an appropriate thread and almost always there will be a response to be had from a regular with experience of your problem whatever it might be.
Ok. Thanks and it is good to know. The new PCP first gave me the Topiramate. I took it for almost 6 weeks and it made my condition worse. It was horrible and I was truly feeling so unwell physically and so down mentally. Plus Topiramate had nasty side effects. When I went back to see him, I was in tears and doctors automatically think you have some medical ādepressionā. It is horrible. All I want to do is to get better but feeling so sick all the time leads one to feel badly and down. I mean obviously you are not going to go there all smiling and feeling happy if you are not well. Wish they would understand how hard this is and be understanding and sympathetic about it, not just ālabelā a person. I mean how on earth could a person live with such symptoms? I am trying so hard to find a cure. Reading some posts gives me some hope. Also Iām wondering if Iām supposed to ask for a particular medicine by name (such as Amitriptyline) or wait for his next recommendation? Maybe I should just ask for Ami next and see if how that goes and it doesnāt make me so sedated during the day so I can hold my job. Working remotely from home has been a lifesaver for me, but now I have no choice. They want all staff back in the building and that means that my symptoms which trigger from motion sickness, movement, lightingāI am freaked out and praying to do this. I have to support myself and my son so I definitely need a paycheck and that comes from holding a job.
