Faye

Member

My name is Faye and I am a 39 yo mom of four . Two grown and two little ones .
I have had various symptoms , some for years i think but because I also have anxiety disorder I have been dismissed a lot .
I am overweight ...I have had one sided migraines for 20 years which I thought were related to my sinuses ...I still am not sure . I have always been "clumsy" . Sometimes , I told my husband , I wake up and feel off balance ...this has happened for 8 years or so . In the last two years I have awoken to blurred vision that improved after a day or two . Optometrist said my dry eyes were causing it . In the last 6 months I began to feel very tired most of the time but still would have insomnia at night . I was a mess I see . Then two months ago I started to have episodes where I was sensitive to bright light ..I would start to lose my peripheral vision and would only retain a tunnel in the middle ...it was just fleeting but this is what sent me to the Doc . I was sent to an ENT who found nothing , a neurologist who did an MRI and said I had trigeminal neuraligic headaches . I told him about the vision thing and he said to see an opthalmologist ...so I did . He saw Paps and the next day I was in the outpatient ward having an LP .
It wasnt bad ..my opening pressure was 27 . My CSF analysis was all normal . He said I have PTC ...go home , take the Diamox and lose weight ! That's it !! The guy won't even call me to answer additional questions !!! I am so angry about it . To top it off I have to travel by car in one week 900 miles to see my son graduate from Army Basic training . I insisted on having him do an MRV so that is scheduled for monday . Should he have done any other blood tests ? Any other tests ? I have gotten an appmnt to see a Neuro OP next week but I am just so terrified that she will have to do more tests and then I wont get to go see my son ! I know my health is important ..I am just upset with the Neuro I had . I am tolerating the 250 2x's a day Diamox but I am cold all the time and have the tingling and I am tired .
Does anyone know if the trip would be safe for someone with this ? Thank you for taking the time .

Member

BTW ...My migraines were only occasional .

Member

Sorry forgot to add ....I also had "pressure" in my head like my head was too heavy and pain in shoulders, neck.

Admin1

Hi Faye

, welcome to our group, and I apologise for the delay in replying to your post.I'm quite shocked you've been given so little information, and that you've been told to lose weight and take the Diamox. Yes losing weight can help you into remission, but it's not going to be overnight, in the meantime you need to know how to live with this condition. He sounds out of touch by calling it PTC, because it is actually now known as IIH.

The pressure you describe and the pain in your neck and shoulders is also a common symptom with IIH. I've found that using 4head works a treat when I have this problem. You can get it from any chemist.

Usually a diagnosis consists of a lumbar puncture, blood tests and either,or, an MRI or CT scan. Also a fields test is usually done in Ophthalmology, and once you're diagnosed you should have regular review appointments with both Neurology and Ophthalmology.

The other symptoms you are getting, feeling cold, the tingling and tiredness are all side effects of the Diamox, and with some people, they can settle down in time, as your body adjusts to it. However, there are sufferers who find it hard to tolerate these side effects, and if you find you are one of them, speak to your Neurologist about it.

If you have any problems getting information or appointments with your Neurologist or Ophthalmologist contact PALS at the hospital you are being seen at, and they can mediate for you and help you.

As for travelling you are OK to travel, it's usually flying that can be a problem. Make sure that you have the necessary breaks on the journey. If you have been prescribed painkillers, ask your doctor about top up pain relief before you go, and explain to him that you are going to see your son, and you need to know how you can keep on top of your pain. Once he sorts this out for you, you will be able to keep on top of any pain, and it wont spoil your day.