Hi guys
It's been a while since I last posted so its time to share with you whats going on in my dizzy world. I wish I could tell you some positive news about how I've finally have found a cure but that will have to wait.
I have been taking betahistine(Serc) these past two weeks and was excited to try it since I have read about other vertigo sufferers success with this medication. It has done nothing for me unfortunately. Such a disappointment as I was hoping that it would at least mask my symptoms somewhat considering it's an anti vertigo drug and my main problem is vertigo. At least now I know that it isn't for me and I can move on and seek other alternative anti vertigo medication to try.
I also saw a new GP 5 weeks ago who also specializes in migraine. He was a lovely chap who listened to my history and seemed very keen in my case. We talked about my current medications and how he wanted to try me on different medications and that he will get me better. I left the office feeling optimistic that this man understood my dilemma and that the next time I would see him a plan of action would commence.
That next time was today. I may as well have been talking to a complete stranger. He opened with "How can I help you"I was like WHAT!!!. He had totally forgotten our first interaction. I had to then repeat my story all over again,discuss my medications all over again, have in office neurological examination (for the hundredth time) all over again. Its so tiring.
I understand that doctors are busy and have to deal with hundreds of different faces and health issues everyday but having to tell the same story to different doctors,specialists,friends,family for 8.5 years over and over and over again is just tedious,frustrating and completely disheartening. All I want is someone to actually listen to me and take my life altering balance disorder seriously. I don't need any more in-office neurological exams,What I need are different medications to try. If one does not work try another. If that does not work try another, if that combination of medication does not work then try another combination. I am open and willing to try anything. I have only ever been given two medications(my current meds) in the best part of a decade.
The good news is he wants to see me again and is willing to try different medications( Hmm, I have been promised this before) and refer me to another specialist in the future. So guys the vertigo ridden journey continues.
Swimmyhead
wow just found your dizziness and vertigo page and it just sums up how i'm feeling, especially the sacial awareness and speech cognitive stuff, I honestly thought I had something seriously wrong but now feel assured that it is normal to have some of this. thanks so much
ReplyDeleteHi Cheryl
DeleteThank you for the comment. I am assuming you have seen your doctor because of your symptoms and have been diagnosed with a vestibular/balance disorder of some kind? If not then I urge you to do so. My vestibular disorder has resulted in numerous hellish symptoms that have become the norm for me over the years. The symptoms that trouble you most are also troubling for me on a daily basis. I am very glad you have found some reassurance. That is why I share my experience to help others such as yourself and for others to realize they are not alone experiencing such crazy symptoms.
Take care
Thank you
Hi Swimmyhead
ReplyDeleteI just found your website today while whining to Google for about the millionth time about my dizzy head. There are so many similarities in our stories, I've never come across someone else so similar to me. Reading your story made me cry, a lot.
Mine came out of nowhere too. I was standing outside and suddenly had a vertigo spell. I have been CONSTANTLY dizzy since that moment. It's been almost 3 years now. Non stop. Some days are slightly less worse than others, but my head has not felt normal for one second, just like yours.
It took over a year for any doctor to take me seriously and finally diagnose me with vestibular disorders, including vestibular migraine.
No one knows what to do with me either. In the past year my dizziness has gotten even worse. And I've also suddenly gotten a whole bunch of other horrible health problems.
I am beyond devastated at what has become of me and my life. I'm so sorry that you've had to endure this special nightmare too.
I wish you all the best in finally finding something that destroys your dizziness, or at the very least, provides some relief. If you do find something, please shout it out for the world to hear so that I will know about it too :)
Take care
Jodi
Hi Jodi
DeleteThank you for sharing a little of your story.I hope my story has given you some small comfort knowing you are not alone living like this.Reading your story helps me too..thank you.
Over the years it has been difficult finding other experiences similar to mine. Most people seem to have spells of dizziness and vertigo with some rest time in between. For me this couldn't be further from the truth. Its every second of every moment day after day just like yourself. It truly has been devastating as you know
Hang in there Jodi. Believe it or not there will be better times ahead. For all we know we could wake up dizzy free this time next week.It's possible. The dizziness could go away as quickly as it appeared. I know that might sound like wishful thinking but clinging on to hope is very important.Its what has gotten me through all the darker moments that at times has literally made a grown man cry.
Are you on migraine meds? I have been for a 3 years or so and have more manageable symptoms for some of the time.I find that light daily cardio exercise can help lift that heavy/full head feeling for couple of hours.I am sure you have tried a migraine diet but if not it's worth a try. Also go see an opthalmologist(eye specialst) to check your eye fucnctioning. I did this recently and found that my eyes no longer function normally so maybe there are some eye exercises we don't know about that could help if that is the case. Keep searching for an answer and don't give up.
When I find the answer I absolutely promise you I will share everything I know.
Keep fighting
Jay
Hi Jay
ReplyDeleteI'm so sorry for my late reply, things have just been so awful.
Thank you so much for replying to me and sharing your story. I'm not sure comforting is the right word, but yes, finding someone else with such a similar experience reminds me that I'm not some strange alien. Even when I've told doctors I'm dizzy non stop, later on in the conversation they'll say something like, "what makes the dizziness come on?" And I just want to yell, it's there ALL THE TIME!!
I recently had the vestibular tests redone and they showed what I was feeling, that my inner ear dysfunction has gotten so much worse in the past 18 months. I just don't know what to do anymore. No meds help, nothing helps.
About the migraine meds.. a few months after the dizziness started and no one knew what it was, I was given a particular med (not for migraines) which was a complete nightmare. When I stopped taking it after only a few weeks, suddenly I started having partial seizures and so now I've got epilepsy too. Never had any symptoms in my life until I stopped that med. So apparently anti epileptic meds are supposed to treat migraines too. The problem is I'm struggling to find one I can tolerate. I'm slowly busy going onto one now and REALLY hoping this one works out. The migraines are relentless and are driving me insane. And of course when I have them the dizziness gets even worse, along with my vision etc.
I haven't looked at the migraine diet, thank you I'll do that. And I've only been to an optomitrist who said my eyes haven't changed much in the last few years. The ENT saw that my eyes flicker all over the place. And my vision is terrible.
You seem to have such a good attitude given your circumstances. I'm sure it's not the case every day all day, but still I think it's amazing. I think the fact that I've not only had the dizziness to contend with, but also other awful health problems, it's been far too much and I've pretty much lost all hope at this point. But I keep trying every day to find a way to be just a little positive.
Thank you so much for your kind message. I wish I could give you a hug.
You keep fighting too
Jodi
Hi Jodi
DeleteSo sorry to hear you have epilepsy as well as vestibular dysfunction. Living with a vestibular disorder alone poses enough problems never mind having epilepsy too. I truly feel for you.....like you don't already have enough to deal with.
I also have found that since my dizziness began other health issues and ailments have cropped up here and there. Nothing comparable to having epilepsy but I do know in some small way how battling one thing and then suddenly having another issue appear can be absolutely overwhelming. I can remember when another thing happened to me and I simply did not know what to do. I truly felt like my body was giving in and I had absolutely no control. It's a horrible situation.
One of my current medications is Gabapentin which is primarily used to treat epilepsy. Have you tried it? I take this with nortriptyline daily. They have not cured me and I am dizzy all of the time. I still have weeks on end of really intense symptoms but some of the time things are a little less intense probably because of this medication. Don't give up hope as there are numerous medications used to treat migraine that both of us have yet to even try.
My dizziness and vision also worsen when I get a headache. In fact my last headache was this past Friday and two days before it appeared my symptoms increased dramatically. I mean the floor was lifting me up and down with more force, my head full of pressure and heaviness. My vision foggy and static like. Tracking movement is a blur and makes me feel like I am being pushed and pulled. The headache went away but I'm still out of it.
Please look into the migraine diet it's worth a shot. Many people hugely improve with diet alone here are some useful links regarding migraine diet,MSG(monosodium glutamate) and a link to a book called Heal your headache that some people swear by. The book talks about dizziness and vertigo and how they relate to migraine. It also offers diet advice etc.
If the links don't work by clicking them just copy and paste.
http://www.amazon.co.uk/Heal-Your-Headache-David-Buchholz/dp/0761125663
http://www.msgtruth.org/avoid.htm
http://www.truthinlabeling.org/hiddensources.html
http://bit.ly/1qGjj35
Regarding your optometrist saying your eyes have not changed much....... A similar thing happened to me. My local optometrist said my eyes were perfect and there was no movement abnormalities. However I felt different. I have always thought my eyes got screwed up after the vertigo attack that left me this way. So I visited an ophthalmologist(eye specialist) Immediately it was discovered that my eyes now have four different movement problems going on. They bounce and twitch when looking up and down, nystagmus looking hard left and right,abnormal zooming in and out and they also want to pull apart. It's worth looking into seeing an ophthalmologist. I believe that my eyes are playing a significant part in this whole dizziness/balance problem.
As I have said before do not lose hope.You are stronger than you think. You are dealing with your situation the best you can. It's perfectly normal to feel depressed and at a complete loss. We have after all had our lives tipped upside down. I try to remain positive but I promise you that is not always the case. I don't always handle it well. I have experienced some of the lowest,darkest and scariest moments of my life living with this problem. We have lost so much and suffered mentally and physically. There are times when I have wanted to give up and sometimes I still do but that is not the answer.
I really do hope your new medication helps you but remember even if it isn't the one all is not lost...there are plenty of others to try and avenues to explore.
Ill leave you with my favourite quote. One that has repeatedly entered my mind during this awful experience.
If Your Going Through Hell, Keep Going
Jay
Hi Jay
ReplyDeleteThank you once again for your message. I wish you weren't suffering too but I can't tell you how good it is to speak to someone else with this kind of dizziness insanity.
I'm sorry that you've also had other health problems coming to join the party. It's so crazy, I've told people that this dizziness alone is enough to destroy a person, not sure why I have to have so much else wrong too. There's the epilepsy, genetic neuropathy, autonomic dysfunction, and such severe reflux (probably neurological) that I struggle to breathe most days because my throat goes into spasms. Insane right?? I'm only 32, I was a normal healthy active person my entire life before that vertigo spell, since then it's just been one thing after the other. Nothing has improved, everything just keeps getting worse.
I'm taking Serc which does absolutely nothing, if anything I feel worse. And now my ENT wants me to take Sibelium. I haven't started it yet as I'm rather fearful of meds because I seem to be so sensitive to them. And of course because of what that one did to me. But I guess I have to try it.
I haven't tried either of the meds you're taking. I'm so glad you've found something that can help even just a little at least.
My dizziness, vision, migraine and everything sound just like yours. I've actually now got two creases between my eyebrows from squinting so much! I will definitely go find an ophthalmologist to go see - thanks.
Thank you so much for all the links, I will have a look tomorrow. I've briefly checked out some migraine food lists. My diet is already so limited and ridiculous because of the reflux and a bit because of the epilepsy. There are a lot of the "bad" foods that I don't eat anyway. I follow a really healthy vegan diet. Reading that nuts, apples and bananas are on the bad list doesn't make me too happy! :)
You made me cry again, you are so kind. And I love that quote! It will stay in my mind too now.
Big hugs
Jodi
Hey Jodi
DeleteIt's also good for me speaking to you knowing that you can completely relate to my predicament. Talking and sharing your experience can be cathartic. It's great way to get some pent up feelings off your chest especially when it is with somebody going through a similar journey and who TRULY understands. It may not cure the physical symptoms but it can ease the mind a little which is important.
You really do have a lot on your plate and you are right in saying the dizziness alone is enough to destroy a person. Having to cope with your other health problems on top of the dizziness must be very difficult indeed but you WILL get through it all eventually and regain control.
I figure that all of us will get ill at some point in our lives whether it be in childhood,mid life or old age something will tend to rear it's ugly head. We all sort of accept illness as part of old age but not something that happens to younger people. Unfortunately it struck us out of the blue as young adults and it is hard to accept. However I like to think that we are having our bad time now and getting it out of the way.
I have experienced reflux daily for many years. Luckily it does not effect my breathing but it is painful. I have recently recently tried serc,it did nothing for me and I felt it made me worse. I had a headache for 2 weeks straight and decided to stop taking it.
As for the migraine diet just do your best. I found it difficult to cut out everything as I really didn't know what would be left for me to eat.
Anyway it's great hearing from you and I wish you all the luck in the world. Feel free at anytime to contact me if you need to talk. You can leave a comment right here as you have been or if you would prefer head over to my dizziness and vertigo @Swimmyhead twitter and PM me.
You are not alone
Jay
Hi again Jay
ReplyDeleteYou're absolutely right, it is cathartic and really emotional talking to someone who truly understands. And I relate more and more as we speak. Your experience with Serc sounds just like mine. My dizziness is worse and headaches/migraines worse too. Of course the doctors say it's impossible it's made me worse, but they say a lot of nonsense :) I think I'll be stopping it too.
You really do have such a great way of looking at these awful things. So we're just doing our lives backwards then? :)
Reflux is no fun either, sorry you have to deal with that too. The breathing problem is unbearable. I have so much to deal with, I'd like to at least be able to breathe properly! I get a lot of pain too. Who built these peculiar malfunctioning bodies??
Thank you so much, I wish you all the luck in the world too. I would really love to stay in touch but I'm not on twitter. Before I wrote here initially I looked for an email address but didn't see one. Perhaps you have a reason for that :) Not sure if I should put my email address here?
Your messages really have brought me some comfort, thank you.
Jodi xxx
Hi Jodi
ReplyDeleteDon't put your email address on this blog as it is public.
Instead I have just added a contact form to my blog. It is on the right hand side. You simply enter your name, add your email address and write your message and click send. This way your email address WILL NOT be public nor will any messages you wish to send. They will be delivered directly to my email inbox. Hope this helps.
Jay
Thanks so much, Jay. I'll go write there now x
ReplyDelete