I have been around here for a year. But since summer, I have only been checking in a couple of times. I guess it is because I do not identify myself mainly as sick anymore - and I do not have so many days in bed, just refreshing this site for some more wonder-posts. I still have symptoms, and I have bad days. But I feel much better.
I have read a lot of posts in here, who is asking for success stories. And for me, I don’t think I will ever tell one. Because I now realise that this i a chronic condition. And the success is in accepting that. And accepting that will not end and turn in to a success.
I still expect to get even better. But recovery will not be, I do not think anyway.
I am on 20 mg nori and 0.25+0.12.5 clonazepam a day. Here in Denmark the doctors are very conservative on medication. So just mixing those to have been a convincing-case.
But I am functional. I take a lot of precautions every day. But I finished my studies, I had a new job. And my surroundings don’t notice me being sick anymore. I am a normal mum to my to children. And I am happy - most of the time. One bad day, and I am crying.
But overall I am doing WELL! I am throwing(?) Christmas tomorrow. And although I have the flu, I have just stuffed the goose.
There is no chance I could have been this much betterwithout this forum! In a country were there is not much info or knowledge on this condition, you have to be very proaktive. An thanks to this site, I have been able to be a litle proaktive. Thanks everyone who puts effort in this site!
Hello Line,
I remember when you first found the forum & how you had such difficulty finding a doc who knew what was wrong and how elated you were to find one in Denmark. It’s great to hear that you are doing so well. Like you, I don’t think there will be recovery from this condition but aim to get where I can enjoy life & cope with the ‘fall out’ of not a avoiding all the triggers! Am so happy for you that you can be a normal mum again & have a new job. Best wishes for continuing success in the New Year.
You mention that you take clonazapam every day (a small dose) & your doctor is being conservative. The doctors here don’t like to prescribe benzo for continuous use. I still rely on mine to get me through the ‘tough times’.
Barb
Merry Christmas everyone!
Line, it is so wonderful to hear success stories on this forum. It gives each person hope that they will feel better one day too. There are so many wonderful people on this forum. I am grateful for every person.
I hope everyone has a very Merry Christmas and a New Year of a new beginning. This has been a difficult year and will be so happy to ring in the New Year
how are things going with you? I remember seeing that you had some success with amitriptiline, and were thinking of trying flunarizine- did you ever try that again? how are the meds going now?
i am still doing well… i used to take ibuprofen and naproxen every day before amitryptiline and now i only need one dose of ibuprofen every two or three weeks i’d say! My sense of balance is a lot better, i no longer have really bad migraines (sometimes a headache that usually goes away on its own), less photophobia and i have only had one 3 minute episode of vertigo in the past 4 months. So it’s quite a success for me! I still have symptoms but really not as bad as it was and i am having almost normal days … can’t stay i have tried sports again but i will probably once this bad health episode i am having to deal with is gone (cancer…).
haven’t tried flunarizine since this summer… i had tried it for 3-4 days but had stopped because i was scared of the extrapyraminal syndrome possibility.
i’m glad to hear about the vertigo improvement, but i am so sorry to hear about the cancer—i really hope that things improve for you and take care of yourself!
Hello Line,
I remember when you first found the forum & how you had such difficulty finding a doc who knew what was wrong and how elated you were to find one in Denmark. It’s great to hear that you are doing so well. Like you, I don’t think there will be recovery from this condition but aim to get where I can enjoy life & cope with the ‘fall out’ of not a avoiding all the triggers! Am so happy for you that you can be a normal mum again & have a new job. Best wishes for continuing success in the New Year.
You mention that you take clonazapam every day (a small dose) & your doctor is being conservative. The doctors here don’t like to prescribe benzo for continuous use. I still rely on mine to get me through the ‘tough times’.
Barb
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Christina, also member in here, and also dane had told me so much good about Clonazapam. And finally I tried myself, and it has made a great deal of difference for me. I had to show my doctor som articles about it, but the actually let me handle a lot of the medication myself. Exept they do not want me to mix preventives!? They are very much against that… So no Topamax for me, before I stop the Nori. And I really dont dare to…
