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, work…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. Can’t give up on those. I don’t know why doctors in my area are not familiar with this condition. The first neurologist I went to was horrid and threw the anxiety “talk” 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 can’t 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 doesn’t 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 ‘Sticks n stones may break my bones but Words can never hurt me’. 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 don’t 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. I’m 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 aren’t 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 couldn’t tolerate the indoor ones, never even tried the outdoor ones and they sit gathering dust in a cupboard here because I couldn’t be bothered with all the hassle of returning them. As you say all the extra ‘equipment’ 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 there’s not much choice. You just have to give it a go.
I can’t tell you all how “comforting” it feels to join this site. I have been going nuts with my life not able to function with all these horrid symptoms. I’m 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. I’m feeling skeptical about doubling if I’m 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?
Always hit the search before asking a question
This one was asked fairly recently too:
Yes very good for screen tolerance too.
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 wasn’t 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! I’m 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 doesn’t 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. It’s 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!
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 “loony” 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 doesn’t help. I’m 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 “loony” experiencing this and that these are “real” 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 it’s 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. Don’t 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 “depression”. 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 “label” 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 I’m wondering if I’m 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 doesn’t 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, lighting—I 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.
Yep, I remember asking that one to myself a lot! I have a lot of empathy for people with chronic conditions now…
Good idea, I would do that if I were you. Anything to start recovery sooner than later… FYI Ami didn’t sedate me at all at 20mg.
I’m so sorry you’re going through this. It is so devastating. I echo your story and the one of many others here in that I suffered for so long before I got any real answers or got better.
I was compelled to reply to you due to the hormone element in your story. Unlike most of us here, I decided not to go for the meds, but instead adopt a functional medicine approach and try to rebalance anything that was ‘off’ in my body. This led me to discover a thyroid condition that was not picked up by mainstream tests. I started taking (and still do) levothyroxine and T3, including lots of supplements. I completely changed my diet to a paleo one, got rid of caffeine and alcohol (now I have the occasional tipple). I also tried to take as much time as I could to rest and de-stress. One of the things that an in-depth hormone test picked up was also an oestrogen dominance/ something not metabolising properly there, so I take a special supplement for that. All in all, I now feel about 95% most days, with flare ups happening during long car journeys, too much time exposed to supermarket type lights and too much stress. I don’t think it’s a coincidence that for me everything started with a miscarriage, and I can only imagine your menopause was a similar trigger. My advice is, see if you can find a buddy also struggling with a chronic condition and support each other. A friend of mine got chronic fatigue syndrome at a similar time and we helped each other no end. And this forum was also always a life line for me.
I hope you can find a medication that gives you relief, but I would urge you to see a hormone specialist too (make sure they test your T3 levels too, not just T4 and TSH, when you get your thyroid tested). And don’t underestimate the power of diet and lifestyle changes. If you want to talk more about anything, PM me and I’ll send you links and advice etc.
Best of luck in the meantime,
I could find half a dozen similar on here, myself included, anytime. It’s no coincidence vestibular specialists waiting rooms are packed with middle aged women. Investigating any possible cause id always the way forward in any condition. There’s a far better chance of success with a definite condition that can be treated over a diagnosis of exclusion under the broad umbrella of MAV. As @springerspirit says go looking for a solution. And meantime check out all the usual menopausal symptoms which in fact overlap about 85% with possible MAV ones so it’s best not to ‘blame’ MAV/VM for everything that transpires whilst on The Change. It can be a very difficult time health wise for many women.
Thank you so much Anna. After reading your post, I went to see what my T3 thyroid was and it is within normal range. I am not familiar with the paleo diet but I do believe that rest and reducing stress is important. It is hard to do though. Stress means different things to different people. Yes, I did not have any of this before my last period hit me and boom I woke up the next month with a swimmy head and went to Urgent care. From there it was BPPV and then when that resolved with physical therapy but I kept having a nauseous head awful feeling all year. PCP was awful and I kept losing more and more hope. Since I have discovered this forum just in the last couple of days, I am feeling and getting hope vibes. I’m still waiting on Lamotrigine to see if it will do something if I stayed on it for some more days. I am so tired of not getting well.
What you describe is totally typical for many. I had a few months delay between that last period and the onset of BPPV-like symptoms which I am positive were just MAV’s first bout in an breviated form. I never made the link to menopause for years and have had consultants still deny there is one. These days on medication all I need is a hot flush for the dizziness to kick in so I draw my own conclusions from that. Retrospectively I discovered there is a window during which HRT which may help can be introduced. Others on here have tried it. Some with success, others not so. All avenues are worth investigation and as soon as possible.
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