Hi all, Just a quick update on tuesday(25th may) afternoon i had a telephone call from the eye dept at the hospital my doc wanted to see me the next day (wednesday) at 9am. off i went on wednesday to have a few tess done then the drops in ,wait for the drops to work then into see the doc. He examined my eyes asked me some questions wasnt very happy that i was still waiting to see the neuro as he requsted an urgent app with the neuro in dec!!!, he then went on to tell me that he was very concerned about my eyesight and has now put me on diomox (which he said i should have been put on in march ) he explained about the side effects from the tabs but to be honest at moment the only one i seem to have is i cant keep my eyes open i'm sleeping all the time , has anyone else had this with these tabs ??He is now trying to rush my appt for the neuro through so just got to wait and see .....
to all
trace xxx

:hello: Hi Tracy, Diamox does make you drowsy I'm afraid, especially for the first few days of taking it, then your body becomes used to it and it should settle down. Click onDiamox and this will explain the side effects more fully for you.

I'm so glad you're finally getting some proper treatment, and hopefully this will make a lot of difference for you

Heidi

just a quickie back at eye hosp today at 11.00am hopefully he will have some answer's for re: seeing a neuro (i tried chasing my appt myself and got sent round in circles one of the sec even told me i didnt need to have any more LP's only one is required with this condition )will update u all later fingers crossed
to all xxxxxx

well back from the hospital no good news the results from my visual fields test last week shows that my eyes have gotten worse since my last visual fields which was october 09 especially my left eye, my blood test results show that my pottassium level is 3.9 the doc said its a bit low? i dont know not sure what it should be ?? , he has written a letter to my GP asking her to pescribe me with some pottassium supplements and also refer me to a dietician , I am on a diet but struggling to loose it as i cant really exercise because of my fibromyalgia . Did ask him about these new wobble machines if i would be able to use one of those but he didnt really know, anyways he did manage to get me an urgent appt with a mr.matthews at b'ham eye clinic for this fri which i was thankful for and told me to ask him about the wobble machines and also about upping my diamox tabs

have had a really bad head since monday dont kno if its to do with the weather or not

to all hope u all having a decent day
trace xxxx

Trace,
You poor thing! I'm glad you got an eye doc. appt.! When you already have a bad head, bad weather makes it so much worse! I hope you feel at least a little better soon!!!







Nicole

Great you got an appointment Tracey hopefully things will move along for you now. Not sure about the wobble machines do you think the vibrations might irritate you even more?

Hi Tracey, I'm, so glad your appointments been sorted, and hopefully they can stop your eyes from getting any worse. I too am not sure about the wobble machines, as I'm not sure how that would affect your head, but your doctor will be able to advise you so much more, so it is worth asking. If he says no, have you thought about using slendertone, they have belts and shorts, that help to tone you up. I've got both which were great, and they do work really well, but I had to stop using them, because they kept dislodging the shunt in my abdomen.

You could even ask about him referring you to physiotherapy, so they could help you with exercises that were designed around your Fibromyalgia.

all, i'm back again lol, well had my appt with new doc and this is what happened..... he looked in my eyes without any drops, then told me he was hoping to have my scan results and photo's ,and visual field results and my file before seeing me but they hadnt arrived ,then went on to say
1. he dosent seem to think my eyes are a problem .my optic nerves are small and squashed, my visual fields test is worse than what it was before, but nothing damaged so if i want to i can come off the diamox, but seeing as it is taking my swelling down on my body i can stop on it ,it's entirley upto me .......!!!!!
2. he went on to tell me that i have definatley got I.I.H
but if i loose weight it will go away and i dont need another LP,
3. i also have Cerebellar Tonsillar Ectopia. Again he said i dont need any treatment for this and again if i loose weight it will go away !!!! and also its very rare to get a high pressure lp when u have this condition.....
He will see me again in 3 months oh yes i asked him about the wobble machines and he said there is no reason why i couldnt use them.

as i left the hospital had phone call of my GP she has stopped my fuesomide
tabs because my potassium level was 3.9, so i'm in a dilemma now cos if i stop my diamox i am gonna swell like a big balloon .......

p.s i still got this bloody headache dont kno if its the weather or what

to all
trace xxxx

Hi Tracey I'm a little confused by your doctor's decision, and a little bit alarmed too. He's noted that your optic nerves are squashed, and your visual fields test is worse, then tells you nothing is damaged so you can come off the Diamox! :suspect:

He has also told you that you have IIH, but if you lose weight it will go, and more or less left you to decide whether or not to take medication, which I find absolutely horrifying, especially as he's checked your eyes without drops, or had your file and the relevant information in front of him!!

The Diamox isn't to control fluid retention, and is actually a carbonic anhydrase inhibitor which reduces the activity of the carbonic anhydrase, which is a protein in your body. It's not a diuretic which help to prevent or treat fluid retention, which is what Furosemide does.

I personally would not be satisfied with what you have been told, and would in fact ask to either see another doctor or contact your hospital PALS, as to be honest, the fact your optic nerves are squashed, and your visual fields are worse, I think it's irresponsible for him to be advising you to not take the Diamox. True, losing weight does help the IIH, and can put you in a remission phase, but weight doesn't disappear overnight, and by telling you to do the above, he has, in my mind, put your vision at risk as well as your health in general.

Please, please get another opinion and don't stop your Diamox, until you've had one. Also have another word with your GP about the Furosemide, and explain about your worry about your fluid retention.

Hi Trace... seems you came out of the doctor more confused than you went in. I wonder sometimes do they actually think before they speak. Now you have three months to wait and see... makes me mad when they do that. Did you try the wobble machines? I heard they work great but if you have a headache not sure how you would react to them. I think losing weight must be one of the most difficult things to do if you are not in the right frame of mind and with all the symptoms you have from IIH how could you be in the right frame of mind. Have you thought of trying one of the motivational clinics? damn expensive but maybe worth a shot.