Need help please. I'm about to give up

Hello,

I’m 26 and from Germany.

Unfortunately vertigo isn’t my only (possibly migraine-related) symptom but the last recent one.

My journey into this nightmare began with various visual symptoms: visual snow (had mild VS as long as I can remember), increased afterimages, increased awareness of floaters, light sensitivity, difficulty with visual processing and a lot of other weird stuff.

My other symptoms include: vertigo, tinnitus, lightheadedness, depersonalization, nausea, balance problems, paresthesia along others.

Except for some mild visuals that I had all my life, this crap started 3 years ago after a bad migraine attack triggered by alcohol. Since then new symptoms are popping off every few months without ever going into remission though I “enjoyed” a 1,5-2 years break where my symptoms remained stable. Except for this single migraine attack 3 years ago I don’t get them anymore (and didn’t use to get them on a frequent basis before), at least not in the “standard” variant. Instead I have nearly constant head pressure and sometimes I get some migraine-like pounding pain that last for a few seconds. I also often get neck pain or pain around my eyes which usually stays for longer periods. Especially the latter type seems to be connected with the progression of existing and appearance of new symptoms.

Since 1 month ago I also get those rocking sensations, especially when lying in my bed. This began after a cinema visit and goes along with a lot of dizziness/depersonalization/nausea which frequently develops in what appears to be a panic attack. I now get those nearly every week. When this first happened I freaked out and landed in the ER. Now I’m doing my best to stay calm in these situations. Nevertheless, these attacks keep getting worse each time. So I’m not really sure if they are in fact panic attacks. They just come out of nowhere and I have the feeling that the anxiety is more the result of the symptoms rather than their cause but that’s just my impression. They can also last for days with one attack turning into another and I feel like crap all the time (it’s definitely the most intensive and frightening feeling far above everything I have ever experienced before). Also my visuals and other symptoms are going nuts then.

So far no doctor was really able to help me. Needless to say that every medical test (MRI, VEP, EEG, tons of blood works) came back clear. I’m feeling out of options now and don’t know what to do. I’ve tried a few meds but none seemed to help so far. I’m currently on a beta-blocker, topamax and was advised to go on an SSRI (Celexa) to fight the depression (my doc thinks I’m at risk for suicide). During the last attack I took a benzo but this is not recommended as a long-term solution (and it didn’t help much).

My biggest fear is that I suffer from progressive brain damage (and there’s actually some scientific evidence for this) and that I’ll never overcome this condition. This already has ruined my life and it just keeps getting worse. I haven’t left home for a couple of weeks, I’m just unable to function anymore. I all have is the support of my family for which I’m thankful.

I would love to hear from other people’s experiences and how they cope with this on a daily basis . Maybe there’s even someone out there who has the same or a similar symptom set and can relate to my situation.

Thanks for listening

Cheers

Daniel

Hello Daniel,

So sorry you are feeling so bad. I think many, many people here can relate to what you are going through. Although migraine is classically understood to be pain, it can actually take many forms - visual symptoms, parathesia, vertigo etc… These symptoms can go on for days and or weeks or longer and don’t have to be connected to a headache. Some people with other migraine symptoms never experience a headache.

Many, many people on here can relate to the symptoms you describe. Some of us get headaches, some of us don’t, but we all have migraine and are all familiar with the dizziness/spacyness and/or rocking you describe. I think you are experiencing panic attacks as a result of your migraine symptoms. That is very, very common too, as is depression. These symptoms are very hard to deal with. It doesn’t help that the dizzy aspects of migraine can also make you feel very spaced out and depersonalised, add that to the depersonalisation people can experience when anxious and you can end up feeling very strange indeed. I know, I was once very anxious about all this myself and remember it well.

It sounds to me like you have been thoroughly investigated - MRI etc… so I think you can put your anxieties about brain damage aside. Has no doctor suggested to you that these other symptoms you are getting are caused by migraine. I presume because of the drugs you’re on that’s what the doctors are treating you for? What type of specialists have you seen. Generally the doctors best placed to deal with this type of condition are neurotologists (specialists in dizziness) and/or a neurologist. Although you need to find a neurologist who really knows their stuff where migraine is concerned.

These symptoms feel hugely scary and it often seem like you will never be the same again, but the fact is it is possible to go from dreadfully ill with this, back to normal very quickly with either luck or the right treatment. I have been so ill with such crazy symptoms that it feels like I am on some kind of drug trip: dizzy, hugely sensitive to light, vertigo, visual sensations that make me feel everything is too near and too far and numerous other things. With the help of drugs, changes in diet and lifestyle and regular sleep much of the time I now spend feeling relatively normal and hold down a very pressurised job. Migraine isn’t curable but it is treatable.

I do think your doctor is right and a drug like celexa could be very helpful. I do think your brain damage anxieties and fears that there is something terribly wrong are probably exacerbating how bad you feel physically - stress, depression and anxiety are terrible for migraine. And from everything you’ve said I do believe this is migraine. Funnily enough some SSRI’s can also directly treat the condition as well as the anxiety and depression. So you may help both things. Loads of people have migraine and they aren’t all walking around with brain damage. I’ve lived with this condition at times in a very extreme form and as much as I might feel brain damaged when I am in an attack, I’m not.

I also felt suicidal in the first years of this, I am very, very glad however that I didn’t act on it. If you look at the success stories thread at the top of this board you will see many people who have been through the most dreadful times with this condition and find the right drug and are now leading happy lives. We are here to help and listen - you will get through this troubled time and feel better.

H

Hello Daniel,

I’ve experienced almost everthing on your list, you are not alone and probably no more brain damaged than the rest of us. This is an incredibly scary illness and we all get desperate at times. Try what your doc says, a lot of people need that extra help from an antidepressant, I just started one today. You never know you might stumble (yes that is a pun) across your cure. Don’t give in, you can get help and be better!!!

Tammy the fruit

Daniel: I am so sorry to hear how sick, sad and scared you are. I think once you find the right doctor he/she will put your mind at ease that this is only migraine and not anything life threatening. Look for a neurologist who specializes in headache/migraine even though you don’t get headaches. Also read the book The Migraine Brain by Carolyn Bernstein, M.D. it is very good at explaining what happens to your body during migraine, I think it will help aleviate some of your anxiety. Prolonged anxiety causes depression so it you can get your anxiety under control you may help your depression and dizziness at the same time. Please use these boards and read the different threads here and you will find out you are not alone in any of this, it is more common than you know. I check these boards on a daily basis, it is a huge comfort to me. Hang in there. It will get better.
Joan

Hi Daniel,

Don’t give up hope. When I’ve been in the pit of MAV I’ve wondered how it is possible to feel so bad and not die. I’ve experienced pretty much all the symptoms you’ve got or have had. The promising news is that you can and will get better. It may take a while experimenting with different drugs and lifestyle factors but hang in there. I’m on Prothiaden and am pretty much 90-95% well now most of the time. Bad things still happen but they are not often and are manageable.

You will find this site very informative and the people here really supportive.

Best
Victoria

I am so sorry you are feeling so bad. I can so relate to these feelings, especially when ALL tests come back fine. I say grab the celexa or ask for Effexer up to 75mg, as this helped nudge up my mood just a bit as well as it is widley used for migraine. It took the docs about 1 year to get a proper diagnosis because mine is the silen type, where headaches WERE next to nill. When listing your symptoms, the rocking sensation was a big giveaway for Migraine!!! I think that is a symptom that most of us can relate to. Also, migraine is known for changing symptoms. I am once again experiencing symptoms that I used to get at the very begininng…so don’t worry about your changing symptoms.

Keep us posted and try to hang in there.

Pam

Daniel,

i really feel for you, but you’re not alone. I can relate to all your feelings. But, please read the success stories. People do get better. That does keep me going and prevents me from ever acting on my passive suicidal thoughts. This illness brings down even the strongest of us. It might take time, but you will get there. Please hang in there. You have won half the battle, by at least learning what your dx is.

Lisa

Hallo Daniel

Es tut mir viel Leid, dass du von dieser ur entsetzlichen Krankenheit leiden musst. Es gibt nichts mehr zu erwaehnen, die die anderen nich diskutiert haben, aber ich wollte hinfuegen, dass man besser werden kann. Es braucht ein guter Artzt mit guten Handlungsoptionen, was es den Medikamenten betrifft. Es waere auch gut wenn du so viel wie moeglich mvertigo benutzt, die Krankenheit viel besser zu verstehen.

Ich bin auch nur 26 Jahre und bin in den letzen 4 Jahren mir dieser scheisse in eine Flaute durchgemacht. Ich bin fuer 1.4 Jahre besser geworden, bin leider jetzt noch mal schwindlig!

Man braucht aber immer die Hoffnung, dass die scheisse besser wird. Ich bin sicher es wird dir besser.

Viel Glueck und willkommen bei mvertigo

Luke